Springer Series on Child and Family Studies

Series Editor: Nirbhay N. Singh

Karrie A. Shogren
Michael L. Wehmeyer
Nirbhay N. Singh Editors

Handbook of
Positive Psychology
in Intellectual
and Developmental
Disabilities
Translating Research into Practice
Springer Series on Child and Family
Studies

Series editor
Nirbhay N. Singh
Medical College of Georgia
Augusta University
Augusta, GA, USA
The Springer Series on Child and Family Studies addresses fundamental
psychological, educational, social, and related issues within the context of
child and family research. Volumes published in this series examine clinical
topics with an additional focus on epidemiological, developmental, and life
span issues. Leading scholars explore such factors as race and immigration,
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vast literature into a comprehensive series of related research volumes.

More information about this series at http://www.springer.com/series/13095

Karrie A. Shogren Michael L. Wehmeyer
•

Nirbhay N. Singh
Editors

Handbook of Positive
Psychology
in Intellectual
and Developmental
Disabilities
Translating Research into Practice

123
Editors
Karrie A. Shogren Nirbhay N. Singh
Department of Special Education, Department of Psychiatry and Health
Kansas University Center on Behavior, Medical College of Georgia
Developmental Disabilities Augusta University
University of Kansas Augusta, GA
Lawrence, KS USA
USA

Michael L. Wehmeyer
Department of Special Education, Beach
Center on Disability
University of Kansas
Lawrence, KS
USA

Springer Series on Child and Family Studies

ISBN 978-3-319-59065-3 ISBN 978-3-319-59066-0 (eBook)
DOI 10.1007/978-3-319-59066-0

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For all those who seek the strengths in others
Karrie A. Shogren
For Shane
Michael L. Wehmeyer
For my brother Bramah for his amazing contributions to
cardiology
Nirbhay N. Singh
Preface

This handbook examines the growing movement toward applying principals

of positive psychology to research and practice across the field of intellectual
and developmental disabilities. The handbook explores how this movement
is being spurred by several factors, from changing perceptions of disability
that emphasize strengths and supports to promote involvement in typical
environments to the growth in applications in positive psychology in general.
Contributions to this unique volume focus on the applications of positive
psychology across such fields as mental health, education, and medicine that
provide services and supports to people with intellectual and developmental
disabilities and their families. The handbook describes how the emphasis is
shifting to one of positive psychology, focusing on harnessing each person’s
strengths and abilities to enhance each individual’s quality of life. It explores
ways in which practitioners can focus on what a person is capable of
achieving, thereby leading to more effective approaches to supports.
The handbook begins with an introductory section, with chapters providing
overviews of positive psychology, strength-based approaches in the intellectual
disability field, the supports paradigm and emerging strength-based approaches
to assessment. These chapters set the stage for the second section of the book
which focuses on applications of positive psychology in the intellectual and
developmental disability field. Chapters highlight existing and emerging research
and practices directions in positive psychology and intellectual and develop-
mental disabilities, including self-determination, mindfulness, positive behavior
supports, supports planning, quality of life, social well-being, decision-making,
physical well-being, character strengths, adaptive behavior, problem-solving,
goal setting, supported decision-making, assistive technology, motivation,
community living, career design, supported and customized employment,
retirement and again.

Lawrence, KS, USA Karrie A. Shogren

Lawrence, KS, USA Michael L. Wehmeyer
Augusta, GA, USA Nirbhay N. Singh

vii
Contents

Part I Introduction
1 Introduction to Positive Psychology . . . . . . . . . . . . . . . . . . . . . 3
Karrie A. Shogren, Michael L. Wehmeyer
and Nirbhay N. Singh
2 Strengths-Based Approaches to Intellectual
and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . 13
Michael L. Wehmeyer, Karrie A. Shogren, Nirbhay N. Singh
and Hatice Uyanik
3 The Supports Paradigm and Intellectual
and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . 23
James R. Thompson, Michael L. Wehmeyer, Karrie A. Shogren
and Hyojeong Seo
4 Assessment in the Application of Positive Psychology
to Intellectual and Developmental Disabilities . . . . . . . . . . . . . 37
Karrie A. Shogren, James R. Thompson,
Michael L. Wehmeyer, Hyojeong Seo and Mayumi Hagiwara

Part II Applications of Positive Psychology in Intellectual

and Developmental Disabilities
5 Self-determination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
Karrie A. Shogren, Michael L. Wehmeyer
and Kathryn M. Burke
6 Mindfulness: An Application of Positive Psychology
in Intellectual and Developmental Disabilities . . . . . . . . . . . . . 65
Nirbhay N. Singh, Giulio E. Lancioni, Yoon-Suk Hwang,
Jeffrey Chan, Karrie A. Shogren and Michael L. Wehmeyer
7 Building Positive, Healthy, Inclusive Communities
with Positive Behavior Support . . . . . . . . . . . . . . . . . . . . . . . . 81
Matt J. Enyart, Jennifer A. Kurth and Daniel P. Davidson
8 The Mindfulness-Based Individualized Support Plan . . . . . . . 97
Monica M. Jackman, Carrie L. McPherson,
Ramasamy Manikam and Nirbhay N. Singh

ix
x Contents

9 Translating the Quality of Life Concept into Practice . . . . . . 115

Robert L. Schalock, Miguel A. Verdugo and Laura E. Gomez
10 Focus on Friendship: Relationships, Inclusion,
and Social Well-Being . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
Laura T. Eisenman, Brian Freedman and Marisa Kofke
11 The Role of Positive Psychology in Interpersonal
Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145
Ishita Khemka and Linda Hickson
12 Exercise, Leisure, and Physical Well-Being . . . . . . . . . . . . . . . 173
James K. Luiselli
13 Character Strengths . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189
Karrie A. Shogren, Ryan M. Niemiec, Dan Tomasulo
and Sheida Khamsi
14 Adaptive Behavior . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 201
Marc J. Tassé
15 Problem Solving and Self-advocacy . . . . . . . . . . . . . . . . . . . . . 217
Michael L. Wehmeyer and Karrie A. Shogren
16 Goal Setting and Attainment and Self-regulation . . . . . . . . . . 231
Michael L. Wehmeyer and Karrie A. Shogren
17 Supported Decision-Making as an Alternative
to Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 247
Jonathan G. Martinis, Tina M. Campanella, Peter Blanck,
Michael L. Wehmeyer and Karrie A. Shogren
18 Assistive Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261
Giulio E. Lancioni, Nirbhay N. Singh, Mark F. O’Reilly,
Jeff Sigafoos, Francesca Campodonico and Gloria Alberti
19 Intrinsic Motivation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 285
Karrie A. Shogren, Jessica Toste, Stephanie Mahal
and Michael L. Wehmeyer
20 Teaching Community Living Skills to People
with Intellectual and Developmental Disabilities . . . . . . . . . . . 297
Raymond G. Miltenberger, Heather Zerger, Marissa Novotny
and Rocky Haynes
21 Career Development and Career Design . . . . . . . . . . . . . . . . . 311
Laura Nota, Lea Ferrari, Teresa Maria Sgaramella
and Salvatore Soresi
22 Supported and Customized Employment . . . . . . . . . . . . . . . . . 329
Wendy Parent-Johnson and Laura Owens
Contents xi

23 Retirement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 339
Roger J. Stancliffe, Michelle Brotherton, Kate O’Loughlin
and Nathan Wilson
24 Aging . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 357
Lieke van Heumen and Tamar Heller
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 373
Editors and Contributors

About the Editors

Karrie A. Shogren, Ph.D. is a Professor of Special Education, Senior Scientist at the Life
Span Institute, and Director of the Kansas University Center on Developmental Disabilities
at the University of Kansas. Dr. Shogren has published extensively in the intellectual and
developmental disabilities field, and her research focuses on assessment and intervention in
self-determination and positive psychology, and the application of the supports model
across the life span. She is co-editor of Remedial and Special Education and Inclusion.
Michael L. Wehmeyer, Ph.D. is the Ross and Mariana Beach Distinguished Professor of
Special Education and Senior Scientist and Director, Beach Center on Disability, at the
University of Kansas. Dr. Wehmeyer’s research focuses on self-determination, understanding
and conceptualizing disability, the application of positive psychology to disability, conceptu-
alizing and measuring supports and support needs, and applied cognitive technologies. He is the
co-editor of American Association on Intellectual and Developmental Disabilities e-journal,
Inclusion.
Nirbhay N. Singh, Ph.D., BCBA-D is Clinical Professor of Psychiatry and Health
Behavior at the Medical College of Georgia, Augusta University, Augusta, GA, and CEO
of MacTavish Behavioral Health, in Raleigh, NC. His interests include mindfulness,
behavioral and psychopharmacological treatments of individuals with diverse abilities,
assistive technology, and mental health delivery systems. He is the editor in chief of three
journals: Journal of Child and Family Studies, Mindfulness, and Advances in Neurode-
velopmental Disorders, and editor of three book series: Mindfulness in Behavioral Health,
Evidence-based Practice in Behavioral Health, and Children and Families.

Contributors

Gloria Alberti Lega F. D’Oro Research Center, Osimo, Italy

Peter Blanck Burton Blatt Institute, Syracuse University, Syracuse, NY,
USA
Michelle Brotherton Centre for Disability Research and Policy, University
of Sydney, Lidcombe, NSW, Australia
Kathryn M. Burke University of Kansas, Lawrence, KS, USA

xiii
xiv Editors and Contributors

Tina M. Campanella Quality Trust for Individuals with Disabilities,

Washington, DC, USA
Francesca Campodonico Lega F. D’Oro Research Center, Osimo, Italy
Jeffrey Chan MINDS, Singapore, Singapore
Daniel P. Davidson Intermountain Centers for Human Development,
Tucson, AZ, USA
Laura T. Eisenman School of Education, College of Education and Human
Development, University of Delaware, Newark, DE, USA
Matt J. Enyart University of Kansas, Lawrence, KS, USA
Lea Ferrari Department of Philosophy, Sociology, Education and Applied
Psychology, Larios Laboratory, University Center for Disability, Rehabilitation
and Inclusion, University of Padova, Padova, Italy
Brian Freedman Center for Disabilities Studies, College of Education and
Human Development, University of Delaware, Newark, DE, USA
Laura E. Gomez University of Oviedo, Oviedo, Spain
Mayumi Hagiwara Beach Center on Disability, Kansas University Center
on Developmental Disabilities, University of Kansas, Lawrence, KS, USA
Rocky Haynes Department of Child and Family Studies, University of South
Florida, Tampa, FL, USA
Tamar Heller Department of Disability and Human Development, University
of Illinois at Chicago, Chicago, IL, USA
Linda Hickson Teachers College, Columbia University, New York, USA
Yoon-Suk Hwang Learning Sciences Institute Australia, Brisbane CBD,
QLD, Australia
Monica M. Jackman Little Lotus Therapy and Consulting, Port St. Lucie,
FL, USA
Sheida Khamsi University of Kansas, Lawrence, KS, USA
Ishita Khemka School of Education, St. John’s University, Queens, NY,
USA
Marisa Kofke University of Delaware, Newark, DE, USA
Jennifer A. Kurth University of Kansas, Lawrence, KS, USA
Giulio E. Lancioni Department of Neuroscience and Sense Organs,
University of Bari, Bari, Italy
James K. Luiselli North East Educational and Developmental Support
Center, Tewksbury, MA, USA
Stephanie Mahal University of Kansas, Lawrence, KS, USA
Ramasamy Manikam University of Kentucky, Lexington, KY, USA
Editors and Contributors xv

Jonathan G. Martinis Burton Blatt Institute, Syracuse University,

Washington, DC, USA
Carrie L. McPherson College of Education and Human Services, Murray
State University, Murray, KY, USA
Raymond G. Miltenberger Department of Child and Family Studies,
University of South Florida, Tampa, FL, USA
Ryan M. Niemiec VIA Institute on Character, Cincinnati, OH, USA
Laura Nota Department of Philosophy, Sociology, Education and Applied
Psychology, Larios Laboratory, University Center for Disability, Rehabilitation
and Inclusion, University of Padova, Padova, Italy
Marissa Novotny Department of Child and Family Studies, University of
South Florida, Tampa, FL, USA
Laura Owens University of Wisconsin–Milwaukee, Milwaukee, WI, USA
Kate O’Loughlin Ageing, Work and Health Research Unit, University of
Sydney, Lidcombe, NSW, Australia
Mark F. O’Reilly Department of Special Education, University of Texas at
Austin, Austin, TX, USA
Wendy Parent-Johnson University of South Dakota, Sioux Falls, SD, USA
Robert L. Schalock Hastings College, Chewelah, WA, USA
Hyojeong Seo Department of Special Education Gongju, Kongju National
University, Gongju, ChungNam, South Korea
Teresa Maria Sgaramella Department of Philosophy, Sociology, Education
and Applied Psychology, Larios Laboratory, University Center for Disability,
Rehabilitation and Inclusion, University of Padova, Padova, Italy
Karrie A. Shogren Department of Special Education, Beach Center on
Disability/Kansas University Center on Developmental Disabilities,
University of Kansas, Lawrence, KS, USA
Jeff Sigafoos School of Educational Psychology, Victoria University of
Wellington, Wellington, New Zealand
Nirbhay N. Singh Medical College of Georgia, Augusta University,
Augusta, GA, USA
Salvatore Soresi Department of Philosophy, Sociology, Education and
Applied Psychology, Larios Laboratory, University Center for Disability,
Rehabilitation and Inclusion, University of Padova, Padova, Italy
Roger J. Stancliffe Centre for Disability Research and Policy, University of
Sydney, Lidcombe, NSW, Australia
Marc J. Tassé The Ohio State University Nisonger Center, Columbus, OH,
USA
xvi Editors and Contributors

James R. Thompson Beach Center on Disability/Kansas University Center

on Developmental Disabilities, University of Kansas, Lawrence, KS, USA
Dan Tomasulo Department of Counseling and Clinical Psychology,
Columbia University, Teachers College, New York, NY, USA
Jessica Toste University of Texas at Austin, Austin, TX, USA
Hatice Uyanik Beach Center on Disability/Kansas University Center on
Developmental Disabilities, University of Kansas, Lawrence, KS, USA
Lieke van Heumen Department of Disability and Human Development,
University of Illinois at Chicago, Chicago, IL, USA
Miguel A. Verdugo University of Salamanca, Salamanca, Spain
Michael L. Wehmeyer Department of Special Education, Beach Center on
Disability/Kansas Lawrence, KS, USA; University Center on Developmental
Disabilities, University of Kansas, Lawrence, KS, USA
Nathan Wilson School of Nursing and Midwifery, Western Sydney
University, Richmond, NSW, Australia
Heather Zerger Department of Child and Family Studies, University of
South Florida, Tampa, FL, USA
 Part I
Introduction
 Introduction to Positive Psychology
1
Karrie A. Shogren, Michael L. Wehmeyer
and Nirbhay N. Singh

in the handbook describe how the emphasis on

Introduction
the intellectual disability field is shifting to one
aligned with positive psychology, focusing on
The goal of this handbook is to examine the
harnessing each person’s strengths and abilities
growing movement toward applying principles
to enhance each person’s quality of life. We hope
of positive psychology to research and practice in
these chapters will serve as a resource for
the field of intellectual and developmental dis-
researchers, clinicians/practitioners, graduate
abilities. The handbook explores how this
students, educators, and others involved in sup-
movement is being spurred by several factors,
porting people with intellectual disability through
including the emergence of new models of
research, policy, and practice to focus on what a
understanding disability that are shifting the
person is capable of achieving, thereby leading to
focus to building on personal strengths (Chap. 2)
more effective approaches to providing supports
as well as the emerging supports paradigm that
and enhancing outcomes.
focuses on assessing support needs and building
The editors of this handbook believe that to
strengths-based systems of supports that promote
understand the current context and emerging
involvement in community environments (see
application of positive psychology to the intel-
Chap. 4). Other chapters focus on the application
lectual and developmental disability field, a brief
of practices linked to positive psychology across
history of deficit-based models in the disability
such diverse fields as mental health, education,
and psychology field is necessary, as that back-
and medicine that provide services and supports
ground provides a context for understanding the
to people with intellectual and developmental
emergence of positive psychology and strengths-
disabilities and their families. All of the chapters
based approaches and how the application of
positive psychology practices, such as those
discussed in this handbook, provides a means for
the future of supports and services to be
K.A. Shogren (&)
M.L. Wehmeyer
Beach Center on Disability/Kansas University strengths-based and aligned with the values,
Center on Developmental Disabilities, University of interests, and preferences of people with intel-
Kansas, 1200 Sunnyside Ave., Rm. 3136, Lawrence, lectual and developmental disabilities. Thus, this
KS 66045, USA
chapter will provide a brief history of
e-mail: [email protected]
deficit-based approaches in the psychology and
M.L. Wehmeyer
disability field to provide a context for the
e-mail: [email protected]
emergence of positive psychological approaches,
N.N. Singh
then discuss critical factors in the emergence of
Medical College of Georgia Augusta University,
997 St. Sebastian Way, Augusta, GA 30912, USA positive psychology, key terms and constructs in
e-mail: [email protected] positive psychology, and the alignment of

© Springer International Publishing AG 2017 3

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_1
4 K.A. Shogren et al.

positive psychology with emerging models the diagnostic criteria involve identifying significant
intellectual and development disability field, limitations in intellectual functioning and adap-
setting the stage for further elaboration of these tive behavior (Schalock et al., 2010). Similarly,
models in the chapters that follow. developmental disabilities are defined by mental
or physical impairments that lead to substantial
functional limitations in major life activities
Deficit-Based Models in Psychology (“Developmental Disabilities Assistance and Bill
and Disability of Rights Act of 2000”). While the support
model (see Chap. 3) asserts that the purpose of
The fields of psychology and intellectual and diagnosis is to establish the need for supports and
developmental disabilities share a common his- to initiate a systematic process of assessing
tory—a history dominated by a focus on deficits support needs and planning for supports linked to
and limitations. In the disability field, disability personally valued outcomes (Schalock et al.,
has historically been viewed through a medical 2010, 2012), historically, disability diagnosis and
lens with a focus on identifying the presence of classification was viewed as an end. Diagnosis
disability and attempting to cure or remediate its was used to place people with intellectual dis-
characteristics (Wehmeyer, 2013b; Wehmeyer ability into programs, and throughout history,
et al., 2008). As we will show in this handbook, such programs were characterized by segregation
there are strengths-based approaches that have and unequal treatment. Driven largely by the
emerged from medicine and related health pro- dominance of IQ testing, which emerged in the
fessions for people with intellectual and devel- fields of psychology and disability in the early
opmental disabilities (e.g., mindfulness, see 1900s, diagnosis and classification based on IQ
Chap. 6; exercise, sport, and physical well-being, dictated the options available with differing
see Chap. 12); however, throughout much of programs. The underlying premise of segregation
modern history, the focus was on identifying was that because of the deficits experienced by
pathology rather than on building strengths and people with intellectual and developmental dis-
supports (Wehmeyer et al., 2008). This is abilities, they needed separate and specialized
reflected in the diagnostic systems used histori- settings for remediation that would enable them
cally and currently for intellectual and develop- to, after addressing the deficits, be reintegrated
mental disabilities, as well as the terminology into society. As such, programs were created,
used over time. As Wehmeyer et al. (2008) wrote particularly in the education system, based pri-
about the assumptions that undergirded the marily on level of intellectual functioning. Such
diagnostic term “mental retardation,” which programs, however, did not consider support
preceded intellectual disability, as well as the needs or strengths and preferences of people with
terms that preceded “mental retardation” (e.g., intellectual disability. And, the educative focus
mental deficiency, mental subnormality): of segregated settings, particularly institutions for
people with intellectual disability, was quickly
The first such assumption was that the disability
resided within the person. To have mental retar- lost, with segregated settings becoming places of
dation was to be defective. The loci of that defect custodial care, characterized by neglectful and
was the mind. The term mental, which is common even abusive treatment of people with intellec-
to all of these terms, means of or pertaining to the tual disability, principally because they were not
mind. The nature of the defect of the mind (mental
deficiency) was inferior mental performance viewed as fully human given their “deficits.”
(mental subnormality) characterized by mental The psychology field has also been charac-
slowness (mental retardation)… It is a disability terized as a deficit-oriented history, shaped by the
determined by indicators of performance linked to focus that emerged in the twentieth century of
limitations in human functioning (p. 312).
classifying and remediating mental illness, in
The process of diagnosing intellectual dis- large part because of needs of veterans returning
ability continues to be rooted in these ideas, as from World War II and the establishment of the
1 Introduction to Positive Psychology 5

Veterans Administration and the National Insti- community environments, and supports should
tute of Mental Health, which provided funding be identified that promote success in those
for research and treatment of mental illness. As environments, building on strengths and based
such, psychology essentially adopted a disease on an understanding of support needs. Critical to
model of human functioning (Linley, Joseph, this perspective is the inherent value of the per-
Harrington, & Wood, 2006), building classifica- son and their values, preferences, and strengths
tion and treatment systems for mental illness, both in identifying environmental demands and
rather than for mental health. This combined with in planning for supports to address those
the emphasis within psychology on operant demands. Further, supports do not just involve
psychology and abnormal development during changing the person (e.g., teaching new skills),
this time led to, as Seligman (1998) described it: but supports also involve changing the environ-
Human beings were seen as passive foci: Stimuli ment to make it more accessible (e.g., cognitively
came on and elicited “responses,” or external “re- accessible materials). As such, these models are
inforcements” weakened or strengthened “re- closely linked to positive psychology, with its
sponses,” or conflicts from childhood pushed the emphasis on positive traits, values, and institu-
human being around. Viewing the human being as
essentially passive, psychologists treated mental tions, described next.
illness within a theoretical framework of repairing Martin Seligman, during his tenure as presi-
damaged habits, damaged drives, damaged child- dent of the American Psychological Association,
hoods and damaged brains” (p. 2). the largest professional organization in psychol-
ogy, is credited with calling attention to the need
for a “reoriented science” of psychology that
“emphasizes the understanding and building of
Emergence of Positive Psychology the most positive qualities of an individual”
(Seligman, 1999, p. 559). He elaborated that
Subsequent chapters will more fully describe “psychology has moved too far away from its
emerging models in the intellectual and devel- original roots, which were to make the lives of all
opmental disability field that provide an alterna- people more fulfilling and productive, and too
tive to the historic, deficit-based models of much toward the important, but not
disability. Briefly, however, emerging models of all-important, area of curing mental illness”
disability are strengths-based and focus on per- (Seligman, 1999, p. 559). And, since Seligman
son–environment fit; they shift to understanding first introduced the term “positive psychology” in
disability not as a characteristic of a person, but 1999, significant and organized attention has
as a function of the interaction between personal been devoted to the science of positive psy-
characteristics and environmental demands. They chology (Yen, 2010).
assume that each person, including each person For example, in 2000, a special issue of
with and without disabilities, has a unique profile American Psychologist was published and
of strengths and limitations that influence their Seligman and Csikszentmihalyi (2000) defined
functioning across different environments. positive psychology in an introductory article.
When thinking about disability, the reference They characterized positive psychology as
environment should be typical community envi- focusing on three “pillars”: (a) valued subjective
ronments, not segregated environments, and the experience, (b) positive individual traits, and
purpose of developing a profile of personal (c) civic values and the institutions that support
strengths and limitations, including disability them. Articles were included in the special issue
characteristics, is to identify the individualized on positive experiences: subjective well-being
supports needed by the person to be successful in (Diener, 2000), optimal experience (Massimini &
the environments that the person wants to access. Della Fave, 2000), optimism (Peterson, 2000),
Thus, the person’s preferences, interests, and and happiness (Myers, 2000); and on positive
values should guide the identification of relevant traits: self-determination (Ryan & Deci, 2000),
6 K.A. Shogren et al.

wisdom (Baltes & Staudinger, 2000), mature Key Terms and Constructs
defenses (Vaillant, 2000), and exceptional per-
formance (Lubinski & Benbow, 2000; Simonton, Anytime a new field emerges and experiences
2000). Hart and Sasso (2011), in a review of the such quick growth, there are going to be ongoing
literature since 2000, found that more than discussions and debates about its parameters. For
20,000 articles had been published in the area of example, researchers have found that multiple
positive psychology, with a steady growth since definitions of positive psychology have been
the early 2000s and the publication of the introduced in the field, and there are multiple
Seligman and Csikszentmihalyi special issue. frameworks for the constructs that fall within its
A journal, The Journal of Positive Psychology, parameters. For example, Hart and Sasso (2011),
was established in 2006 to “provide an interdis- in their review of the literature, found that
ciplinary and international forum for the science although Seligman and Csikszentmihalyi (2000)
and application of positive psychology.” described three pillars, only the first two pillars—
In addition to a new journal and peer-reviewed valued subjective experiences and positive indi-
articles, there have been a number of scholarly vidual traits—were well represented in the liter-
books published that describe the science of ature. Limited research and definitional
positive psychology. The Oxford Handbook of consistency had emerged around civic values and
Positive Psychology (Snyder & Lopez, 2002), institutions. Further, they identified another area
now in its second edition (Lopez & Snyder, in the field not included in Seligman and Czik-
2009), defines positive psychology and constructs szentmihalyi’s framework—resiliency under
included within its parameters. Specialized conditions of adversity.
handbooks have been published, considering the Interestingly, this area of research may have
role of positive psychology in disability (Weh- emerged in response to early critiques of the field
meyer, 2013a), work (Linley, Harrington, & of positive psychology. Early critiques suggested
Garcea, 2009), and education (Gilman, Huebner, positive psychology was ignoring the negative in
& Furlong, 2009). Texts have been published on life and adopting a hedonistic view of happiness
methods in positive psychology (Ong & van that was not based in reality (VanNuys, 2010a, b).
Dulmen, 2006) and assessment in positive psy- Positive psychology researchers have argued,
chology (Lopez & Snyder, 2003). Classification however, that positive psychology does not
systems aligned with positive psychology have ignore the negative, but instead focuses both on
also been developed. For example, Character identifying and understanding the positive aspects
Strengths and Virtues: A Handbook and Classi- of life, as well as using this understanding to
fication (Peterson & Seligman, 2004) was pub- address and navigate barriers that are encountered
lished as a definition and classification system for in life. For example, Diener (2009) wrote: “pos-
strengths and virtues, much like the Diagnostic itive psychologists do not ignore the negative in
and Statistical Manual defines and classifies life. However, they maintain that often one form
mental disorders. The VIA (formerly Values in of solution to problems, and in some cases the
Action) classification system identified in this text most effective one, is to build on the positive
has been used to create character strengths rather than directly work on the problem” (p. 10).
assessments that can be used by children and Overall, however, the umbrella of positive
adults to identify and attempt to capitalize on their psychology is broad and expanding. Seligman
character strengths in multiple domains of life and Czikszentmihalyi (2000) included 15 con-
(Park & Peterson, 2006) (see Chap. 13) Under- structs representing the field. When the 2nd
graduate textbooks in positive psychology have Edition of The Handbook of Positive Psychology
been published (Baumgardner, 2008; Peterson, (Lopez & Snyder, 2009) was published, it
2006; Snyder, Lopez, & Pedrotti, 2010), and included 65 chapters, on topics ranging from
courses are offered at universities all over the emotional intelligence (Salovey, Mayer, Caruso,
USA and Europe (Yen, 2010). & Yoo, 2009) and creativity (Simonton, 2009),
1 Introduction to Positive Psychology 7

to love (Hendrick & Hendrick, 2009) and autism spectrum disorders (Groden, Kantor, Woo-
humility (Tangney, 2009), to happiness and dard, & Lipsitt, 2011; Zager, 2013). Researchers
positive growth after physical disability (Dunn, have also systematically analyzed the measurement
Uswatte, & Elliott, 2009). The handbook also and application of constructs from positive psy-
included interdisciplinary efforts in the field, chology studied in the general population with
such as the role of neuropsychology in under- people with intellectual and developmental dis-
standing positive affect (Isen, 2009) and the role abilities, including character strengths (Niemiec,
of the heart in generating and sustaining positive Shogren, & Wehmeyer, in press; Shogren, Weh-
emotions (McCraty & Rees, 2009). meyer, Forber-Pratt, & Palmer, 2015), subjective
well-being, and hope (Shogren et al., 2006).
Overall, this body of work suggests a growing
Alignment with the Disability Field focus on strengths-based approaches and positive
psychology in the intellectual and developmental
As mentioned previously, there has been a sig- disability field, highlighting the need for this
nificant increase in research in positive psychol- handbook and a comprehensive review of
ogy, generally, and when looking at research in applications of positive psychology and
the intellectual and developmental disability field strengths-based approaches in the intellectual and
specifically, there has been a growing focus on developmental disability field. In the following
positive psychology and strengths-based chapters, we provide the most recent information
approaches and constructs as well. A review of on the growing application of positive psychol-
research published in leading journals in the ogy to the intellectual and developmental dis-
intellectual and developmental disability field ability field, with the goal of providing a resource
through the mid-2000s found that older articles that will enable the implementation of strengths-
were much less likely to adopt a strengths per- based approaches that will harness each person’s
spective articles than more recently published strengths and abilities to enhance each person’s
articles (Shogren, Lopez, Wehmeyer, Little, & quality of life.
Pressgrove, 2006). For example, from 1975 to
1984, only 22% of articles adopted a strengths
perspective; however, by 1995–2004, 50% of Overview of Handbook of Positive
articles did. When specifically looking at con- Psychology in Intellectual
structs directly associated with positive psy- and Developmental Disabilities
chology (such as happiness and subjective
well-being), only 9% of articles from 1975 to The remaining chapters in this introductory sec-
1984 focused on a positive psychology construct, tion continue the discussion pertaining to posi-
from 1985 to 1995, 15% of articles, and from tive psychology, strengths-based approaches to
1995 to 2004, 24% of articles. disability, and intellectual and developmental
Chapters have also been in general positive disabilities. Chapter 2 examines strengths-based
psychology texts on the role of positive psychology models of disability that emphasize the fit
in understanding disability (Wehmeyer & Shogren, between personal capacity and the demands of
2014), and disability researchers have analyzed the the environment and supports that enable people
degree to which positive psychology aligns with with intellectual and developmental disabilities
and advances research in various domains in the to function successfully in typical contexts.
disability field, including rehabilitation (Dunn & Chapter 3 examines in greater detail the support
Dougherty, 2005; Ehde, 2010), mental health and support needs constructs in promoting suc-
(Baker & Blumberg, 2011), quality of life (Scha- cessful functioning. Chapter 4 introduces
lock, 2004), family supports (Blacher, Baker, & assessments and assessment practices that can
Berkovits, 2013), and supporting students with enable the design of practices to apply principles
8 K.A. Shogren et al.

of positive psychology, determine the efficacy of character strengths assessment and interventions
supports to promote personal strengths, and to the lives of people with intellectual and
evaluate personal growth and outcomes. developmental disabilities, with a focus on the
The next section introduces various applica- use of the VIA Strengths survey.
tions of positive psychology in the field of Chapter 14 describes the measurement of
intellectual and developmental disabilities. adaptive behavior and ways to promote positive
Chapter 5 introduces the self-determination adaptive behavior and autonomous functioning
construct, examines its application to intellec- in people with intellectual and developmental
tual and developmental disabilities, and provides disabilities. Chapter 15 discusses the hope con-
an overview of practices to promote struct, its measurement, and ways to intervene to
self-determination and self-direction. Chapter 6 promote hope and pathways thinking for people
provides a review of mindfulness-based approa- with intellectual and developmental disabilities.
ches to the care and treatment of individuals with Chapter 16 examines goal setting, focusing on
intellectual and developmental disabilities. interventions that have been shown to promote
Chapter 7 describes approaches to system-wide self-regulated problem-solving leading to setting
efforts to promote positive behavioral outcomes and attaining goals in education, employment,
within schools, juvenile justice systems, and health, and other domains for people with intel-
other systems supporting people with intellectual lectual and developmental disabilities. Chapter
and developmental disabilities. Chapter 8 exam- 17 explores how, increasingly, a strengths-based
ines traditional Individual Support Plans and an approach to disability is driving attention away
emerging alternative plan that is based on from the use of plenary guardianship and toward
mindful engagement and aligned with positive models of supported decision-making that enable
psychology. Chapter 9 reviews the literature people with intellectual and developmental dis-
pertaining to quality of life and people with abilities to participate in decisions that impact the
intellectual and developmental disabilities and quality of their lives. Chapter 18 reviews
provides a framework for quality of life as an evidence-based approaches to using assistive
organizing structure for intellectual and devel- technologies for enhancing preferred skills of
opmental disabilities services and supports. individuals who have complex physical and
Chapter 10 examines the knowledge base per- medical issues and increasing their quality of life
taining to building friendships and social net- through self-determination and choice. Chapter
works for people with intellectual and 19 examines the role of motivation in achieving
developmental disabilities and examines prac- positive outcomes, with a focus on
tices in school and other environments to pro- Self-Determination Theory’s structure of intrin-
mote friendship building, improve social sic, autonomous motivation and ways to enhance
inclusion, and enhance social capital. Chapter 11 intrinsic motivation in school, sport, and other
discusses what is known pertaining to settings. Chapter 20 examines the skills that can
problem-solving and decision-making and peo- be enhanced to support individuals with intel-
ple with intellectual and developmental disabili- lectual and developmental disabilities to enable
ties, as well as reviewing programs and practices their physical and social integration in commu-
that promote positive outcomes for this popula- nity settings. Issues such as participation in
tion. Chapter 12 explores what is known about community activities, safety skills, and immer-
exercise, sport, and physical fitness and sion in the community will be covered.
well-being for people with intellectual and Chapter 21 examines the changing landscape
developmental disabilities and provides an in career decision-making, moving from models
overview of practices to promote positive out- of career development that emphasize stages of
comes. Chapter 13 examines the application of development to a focus on career design in which
1 Introduction to Positive Psychology 9

individuals are active participants in actions Oxford handbook of positive psychology (2nd ed.,
leading to future employment opportunities. pp. 7–11). Oxford: Oxford University Press.
Dunn, D. S., & Dougherty, S. B. (2005). Prospects for a
Chapter 22 discusses positive approaches to positive psychology of rehabilitation. Rehabilitation
employment for people with intellectual and Psychology, 50, 305–311.
developmental disabilities, beginning with Dunn, D. S., Uswatte, G., & Elliott, T. R. (2009).
supported employment and including Happiness, resilience, and positive growth following
physical disability: Issues for understanding, research,
self-employment and customized employment and therapeutic research. In S. J. Lopez & C. R. Snyder
models. Chapter 23 explores emerging practices (Eds.), The Oxford handbook of positive psychology
in Australia supporting people with intellectual (2nd ed., pp. 651–664). Oxford: Oxford University
and developmental disabilities to retire to a life of Press.
Ehde, D. M. (2010). Application of positive psychology to
preferences and choices. And, finally (for this rehabilitation psychology Handbook of rehabilitation
section), Chap. 24 examines positive approaches psychology (2nd ed., pp. 417–424). Washington, DC:
to supporting people with intellectual and American Psychological Association.
developmental disabilities as they age at home Gilman, R., Huebner, E. S., & Furlong, M. J. (Eds.).
(2009). Handbook of positive psychology in schools.
and in their communities. New York: Routledge.
Overall, the chapters provide direction for Groden, J., Kantor, A., Woodard, C. R., & Lipsitt, L.
research and practice that applies positive P. (2011). How everyone on the autism spectrum,
psychology approaches to the intellectual and young and old, can…become resilient, be more
optimistic, enjoy humor, be kind, and increase
developmental field and creates pathways self-efficacy—A positive psychology approach. Lon-
for new conceptualizations in research and don: Jessica Kingsley Publishers.
practice. Hart, K. E., & Sasso, T. (2011). Mapping the contours of
contemporary positive psychology. Canadian Psy-
chology, 52, 82–92.
Hendrick, C., & Hendrick, S. S. (2009). Love. In S.
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its relation to human functioning. Intellectual and positive psychology. Journal of Theoretical and
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Yen, J. (2010). Authorizing happiness: Rhetorical demar-
cation of science and society is historical narratives of

Author Biographies conceptualizing and measuring supports and support needs,

Karrie A. Shogren, Ph.D., is a Professor of Special Educa- and applied cognitive technologies. He is the co-editor of
tion, Senior Scientist at the Life Span Institute, and Director American Association on Intellectual and Developmental
of the Kansas University Center on Developmental Disabili- Disabilities ejournal, Inclusion.
ties at the University of Kansas. Dr. Shogren has published Nirbhay N. Singh, Ph.D., BCBA-D, is Clinical Professor of
extensively in the intellectual and developmental disabilities Psychiatry and Health Behavior at the Medical College of
field, and her research focuses on assessment and intervention Georgia, Augusta University, Augusta, GA and CEO of
in self-determination and positive psychology, and the MacTavish Behavioral Health, in Raleigh, NC. His interests
application of the supports model across the lifespan. She is include mindfulness, behavioral and psychopharmacological
co-Editor of Remedial and Special Education and Inclusion. treatments of individuals with diverse abilities, assistive
Michael L. Wehmeyer, Ph.D., is the Ross and Mariana technology, and mental health delivery systems. He is the
Beach Distinguished Professor of Special Education and Editor-in-Chief of three journals: Journal of Child and Family
Senior Scientist and Director, Beach Center on Disability, at Studies, Mindfulness, and Advances in Neurodevelopmental
the University of Kansas. Dr. Wehmeyer’s research focuses Disorders, and Editor of three book series: Mindfulness in
on self-determination, understanding and conceptualizing Behavioral Health, Evidence-based Practice in Behavioral
disability, the application of positive psychology to disability, Health, and Children and Families.
 Strengths-Based Approaches
to Intellectual and Developmental 2
Disabilities

Michael L. Wehmeyer, Karrie A. Shogren,

Nirbhay N. Singh and Hatice Uyanik

examine the role of supports in promoting suc-

Introduction
cessful functioning in typical environments.
The opening chapter introduced the growing field
of positive psychology and provided a context
within which to understand and apply
Different and Pathological
strengths-based approaches to intellectual and
Shogren, Wehmeyer, and Singh (2017) briefly
developmental disabilities. This chapter, in turn,
recounted historical understandings of intellec-
examines historical understandings of disability,
tual disability, but it is worth exploring in a bit
how those impacted understandings of intellec-
more depth how what we now call intellectual
tual disability, and how changing understandings
disability has been understood across time. There
of disability are leading to strengths-based con-
has, of course, always been people with neuro-
ceptualizations of intellectual disability and
logical impairments who have had difficulty
focusing the field on promoting the health
functioning in society (Wehmeyer, 2013). The
and well-being of people with intellectual and
risk factors that result in or cause intellectual
developmental disabilities. Chapter 3 will
disability—biomedical, psychosocial, behavioral,
examine the supports paradigm in intellectual
and educational (Schalock, 2013)—have, by and
and developmental disabilities, as derived from
large, always existed. For the vast majority of
strengths-based approaches to disability, and
time across history, however, people with cog-
nitive impairments were simply indistinguishable
from the poorest and least advantaged members
of society (Wickham, 2013). Keeping in mind
that intelligence, as a construct, is a relatively
M.L. Wehmeyer (&)
K.A. Shogren
H. Uyanik
Beach Center on Disability/Kansas University modern convention, the earliest depictions of
Center on Developmental Disabilities, University of people with intellectual impairments in the
Kansas, 1200 Sunnyside Ave., Rm. 3136, Lawrence, Middle Ages and into the early modern era were
KS 66045, USA of people who were viewed, primarily, as simply
e-mail: [email protected]
different from or apart from the rest of society.
K.A. Shogren The term idiot is one of the oldest terms applied
e-mail: [email protected]
to categorize and describe people with cognitive
H. Uyanik
impairments. It derives from the Greek word
e-mail: [email protected]
idios, which meant uniquely one’s own, private,
N.N. Singh or peculiar; and the Latin idiota, meaning an
Medical College of Georgia, Augusta University,
997 St. Sebastian Way, Augusta, GA 30912, USA outsider (Wehmeyer, 2013, p 29). By the time
e-mail: [email protected] the term began to be applied to people with

© Springer International Publishing AG 2017 13

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_2
14 M.L. Wehmeyer et al.

cognitive impairments (twelfth century in France, deficiency (defective mind) to mental subnor-
referring to an uneducated or ignorant person; mality (subnormal mind) to mental retardation
fourteenth century in England, meaning someone (slow mental functioning).
incapable of ordinary reasoning), the generalized So, as late as the 1970s, the sole conceptual-
sense of peculiar and outside the norm had izations of what we now refer to as intellectual
morphed into a sense of someone who was disability reflected the dual characteristics of
constitutionally different from other people by differentness and defect. Attitudes about people
reason of their (perceived) lack of capacity to with intellectual impairments changed—from the
reason or think and, thus, function typically. eugenics era and its stigmatizing characteriza-
This sense of differentness took on a medical tions of people with intellectual disability as
patina as the field of intellectual disability menaces to society and responsible for many of
emerged, beginning in the nineteenth century. In societies social ills to the post-World War II era
the late 1700s and early 1800s, pioneers in the and its characterizations of people with intellec-
field of psychiatry in England and France had tual impairments as victims of their pathology
begun to differentiate—categorically and diag- but worthy of pity and charity (Smith & Weh-
nostically—between people with mental illness meyer, 2012; Wehmeyer, 2013). Yet, what did
and people whose cognitive impairments were not change was the understanding of intellectual
global and long term, and by the mid-nineteenth disability as an internalized, pathological state
century, institutions had been established to and the perception of people with intellectual
habilitate and provide for people with intellectual disability as different and peculiar.
impairments. The term idiot was initially used to
delineate the entire class of people with cognitive
impairments, eventually, though, becoming a Beyond the Medical Model
term that was used in classification systems to
describe people with the most extensive levels of When it was established in 1948 as the public
impairment. Feebleminded became the preferred health branch of the United Nations, the World
overarching term, with such categories as idiot, Health Organization (WHO) took on, as part of
imbecile, and moron used to delineate subcate- its mission, the classification of diseases. What
gories. The institutions were called hospitals existed at that time were a series of lists of dis-
because they were run by physicians and orga- eases, causes of mortality, and classifications for
nized in the same ways—architecturally and morbidity statistics. The WHO took those lists
process-wise—in which hospitals to treat the sick and structured them into what was referred to as
were organized. the International Classification of Diseases,
Logically and inevitably, intellectual disabil- Injuries, and Causes of Death, or, just ICD.
ity (and disability, in general) was conceptual- There were minor revisions to the ICD in 1955
ized by these medical professionals as if it was a and 1965 and major revisions in 1979 (ICD-9)
disease. Diseases are pathologies, by definition. and 1994 (ICD-10). Specifically, the ICD is a
A person has a disease, and that disease results in taxonomy of diseases and disorders. It is a
symptoms and signs. Feeblemindedness (and, diagnostic tool used for epidemiological, health
later, mental deficiency and mental retardation) management, and clinical purposes. Diseases are
was construed as a type of pathology, as internal defined as pathological processes manifesting in
to the person and resulting in aberrant or atypical characteristic signs and symptoms and impacting
functioning. The field of intelligence testing grew health. According to the WHO-International
in the early twentieth century, and as psycholo- Union of Psychological Science survey of prac-
gists wrested control of the discipline from ticing psychologists, 70% of clinicians in the
medical practitioners, the terms they used world use the ICD-10 in their day-to-day clinical
reflected, increasingly, conceptualizations of work. Within the ICD-10, mental retardation was
defective mental processes from mental included as a disorder, as it had been in every
2 Strengths-Based Approaches to Intellectual … 15

prior version and as would be expected if it was Essentially, the ICIDH proposed different
considered a disease (World Health Organiza- perspectives or planes of experience for looking
tion, 1999). at human functioning and for describing the
Over the decades during which the ICD consequences of diseases on typical functioning.
developed, however, there was a paradigm shift in Within this perspective, human functioning
medicine, from a system that primarily engaged referred to all life activities of a person.
acute illness to one that focused on management The ICIDH perspectives for describing the
of chronic conditions. For the first half of the impact of a health condition or pathology on
twentieth century, the healthcare system was a human functioning were: (a) the exteriorization
configured to respond to acute illnesses, most of a pathology in body anatomy and functions
notably infectious disease like tuberculosis, polio, (e.g., as pertaining to intellectual disability,
smallpox, and so forth. Hospitals were settings central nervous system and intelligence), (b) ob-
where diseases were diagnosed, patients were jectified pathology as expressed in the person’s
isolated, and most care was palliative (Goldsmith, activities (e.g., adaptive behavior skills), and
1990). Goldsmith (1990) noted: (c) the social consequences of pathology (e.g.,
An acute illness was a crisis brought on by an participation in social life domains) (World
external agent that threw the body into violent, life Health Organization, 1980, p. 30).
threatening disequilibrium. With luck, the threat Essentially, the ICIDH recognized that
would pass, but the health care system’s primary besides the impact of health condition factors
function was to comfort the patient until death
occurred (p. 13). (pathology), contextual factors (environmental or
personal factors) are of pivotal importance for
One by one, however, vaccines and advances understanding human functioning, and that lim-
in medical care turned the tide against these ill- itations in human functioning are not necessarily
nesses, and life expectancy increased dramati- linear or causal consequences of a pathology, but
cally. The life expectancy for a female in the are a function of multiple interactive processes
USA in 1948, when the WHO was established, where each factor can influence each dimension
was 69.9 years. For a male, it was 64.6 years. At of functioning and each other factor either
the end of the century, that had risen to directly or indirectly.
79.5 years for females, 73.8 for males. Although The changes in understanding intellectual
it is true that deadly infectious diseases still exist, disability introduced by the WHO and the ICIDH
the change in the medical system as a result of in 1980 began to appear in the definitional and
the successes of the previous decades was an diagnostic procedures used by the field. The 9th
increased focus on managing chronic conditions Edition of the Definition, Classification, and
for longer life and on preventing disease. Systems of Supports manual published by the
By the time the ICD-9 was published in 1979, American Association on Mental Retardation
there was as much interest in issues of managing (Luckasson et al., 1992) stated:
chronic conditions as in diagnosing acute ill-
Mental retardation is not something you have, like
nesses, and, in 1980, the WHO introduced the blue eyes or a bad heart. Nor is it something you
International Classification of Impairments, are, like being short or thin. It is not a medical
Disabilities and Handicaps (ICIDH), which was disorder, although it may be coded in a medical
proposed to provide a system for classifying the classification of diseases… Nor is it a mental dis-
order, although it may be coded in a classification
consequences of disease (instead of diseases of psychiatric disorders… Mental retardation refers
themselves) and of their implications for the lives to a particular state of functioning that begins in
of people living with chronic conditions, childhood and in which limitations in intelligence
including disability. coexist with related limitations in adaptive skills.
16 M.L. Wehmeyer et al.

As a statement about functioning, it describes the Human Functioning

“fit” between the capabilities of the individual and
the structure and expectations of the individual’s
personal and social environment” (p. 9). In 2001, the WHO published its successor to the
ICIDH, titled the International Classification of
Primarily due to political reasons, the term Functioning, Disability, and Health (ICF; WHO,
“mental retardation” was still used in this defi- 2001). The ICF “provides a standard language
nition and in the name of the association, but this and framework for the description of health and
edition marked a stark difference in how the term health-related states (WHO, 2002, p. 2). The ICF:
was defined. Intellectual disability is not some-
… is WHO’s framework for health and disability
thing one has or something one is. It is not … it is the conceptual basis for the definition,
something that is a medical disease or a mental measurement and policy formulations for health
disorder. It is a state of functioning existing when and disability… it is named as it is because of its
there is a lack of fit between the person’s stress is (sic) on health and functioning, rather than
on disability. Previously, disability began where
capacities and the demands of the environment. health ended; once you were disabled, you where
The prior edition of the manual, issued by the (sic) in a separate category. We want to get away
then-still-named American Association on Men- from this kind of thinking. WE want to make ICF a
tal Deficiency (Grossman et al., 1983) also tool for measuring functioning in society, no
matter what the reason for one’s impairments. This
aligned with the prevailing WHO conceptual- is a radical shift. From emphasizing people’s dis-
ization, ICD-9, but did not adopt the framework abilities, we now focus on their level of health.
proposed by the ICIDH, and there is no mention (pp. 2–3).
of capacities, capabilities, or strengths of people
Within ICF, functioning is an umbrella term
with cognitive impairments to be found. The
for all life activities of an individual and
1992 edition, which embraced (though does not
encompasses body structures (anatomical parts of
explicitly cite) the ICIDH, is peppered with ref-
the body) and functions (physiological and psy-
erences to the person’s capacities, most notably
chological functions of body systems), personal
in three assumptions listed as part of the defini-
activities (the execution of tasks or actions), and
tion of “mental retardation”:
participation (involvement in a life situation)
• The existence of limitations in adaptive skills areas. Problems or limitations in functioning
occurs within the context of community (that is, all life activities of a person) are referred
environments typical of the individual’s age to as disability. Disability can result from any
peers and is indexed to the person’s individ- problem in one or more of the three dimensions
ualized needs for supports; of human functioning; problems in body struc-
• Specific adaptive limitations often coexist tures and functions are referred to as impair-
with strengths in other adaptive skills or other ments; problems in personal activities are
personal capabilities; and referred to as activity limitations; problems in
• With appropriate supports over a sustained participation are referred to as participation
period, the life functioning of the person with restrictions. The ICF situates these impairments,
mental retardation will generally improve activity limitations, and participation restrictions
(p. 1). within the interactions between health condi-
tions, environmental factors, and personal factors
So, this shift in how disability was understood (WHO, 2002).
marked the first step toward strengths-based The ICF model has been referred to as a social
approaches to intellectual disability and intro- model (as contrasted with a medical model), a
duced conversations about personal capacities social-ecological model (emphasizing the rela-
and capabilities, support needs and supports, and tionship between personal and environmental
functioning in typical contexts and environments. factors), a biopsychosocial model (emphasizing
2 Strengths-Based Approaches to Intellectual … 17

the interaction of biological, psychological, and Strengths-Based Approaches

social factors), and a person–environment fit to Disability
model (emphasizing that disability lies in the gap
between personal capacity and the demands of Of course, medical, psychological, and other
the environment). Though all such descriptors conceptualizations of disability are not the only
have utility, it is the latter that most clearly factors that have provide impetus for changing
provides a path toward strengths-based approa- how supports are provided to people with intel-
ches to intellectual disability. Within ICF, dis- lectual and developmental disabilities. Although
ability is seen only as the lack of fit between a how the construct we now refer to as intellectual
person’s strengths, capacities, abilities, and disability was understood did not change until
capabilities and the demand of the environment the later decades of the twentieth century, there
in which that person must function. were dramatic changes in society in post-WWII
The 2002 edition (10th) of the (still) American that, in turn, directly influenced policy and
Association on Mental Retardation’s Definition, practice. Starting in the 1950s, parents began to
Classification, and Systems of Supports manual advocate for options for their sons and daughters
(Luckasson et al., 2002) explicitly stated that with intellectual and developmental disabilities
edition’s alignment with the ICF and person– other than the institutions that had dominated the
environment fit models of disability, including service system during the first half of the century.
adding “context” as a fifth dimension of the Federal legislation in the 1960s emphasized
theoretical model presented. The assumptions community-based services. The civil rights
presented as part of the definition were even movement in America influenced people with
more forthcoming about the importance of a disabilities and their advocates to take on the
strengths-based approach, stating that: mantle of civil liberty and equal rights. Eventu-
ally, legislation addressing discrimination and
• Limitations in present functioning must be equal access emerged, including federal acts
considered within the context of community pertaining to equal access to education, protec-
environments typical of the individual’s age tions for people with developmental disabilities
peers and culture. and, ultimately, the Americans with Disabilities
• Within an individual, limitations often coexist Act of 1990 (Wehmeyer, 2013).
with strengths. Federal protections and investments in
• An important purpose of describing limita- community-based supports led to a decline in
tions is to develop a profile of needed institutions. The institution census (number of
supports. people with intellectual and developmental dis-
• With appropriate personalized supports over a abilities living in state-run institutions) peaked in
sustained period, the life functioning of the 1967 at 194,650 people. The census fell below
person with mental retardation will generally 100,000 the first time in 1988 and, as of 2005,
improve (p. 1). was down to 40,532 people residing in these
state-run institutions. Simultaneously, the num-
In the most recent Definition, Classification, ber of smaller, community-based residential set-
and Systems of Supports manual issued by the tings rose. In 1977, the number of people with
now-named American Association on Intellec- intellectual and developmental disabilities living
tual and Developmental Disabilities (AAIDD) in in state-funded or private community-based res-
2010 (Schalock et al., 2010), the term defined idences with six or fewer people totaled 20,400.
was (finally) changed to intellectual disability By 1992, that number had risen to 119,675 and,
and the manual reaffirmed the assumptions to the by 2005, was slightly less than 300,000 people.
definition (above); defined support needs; and An additional 50,000 people lived in slightly
added chapters on context, supports, and larger community residences supporting 7–15
community-based support systems. people (Prouty, Smith, & Lakin, 2006).
18 M.L. Wehmeyer et al.

The increased presence of people with dis- decades (beginning in 1975 through 2004), with
abilities in their communities, including the only slightly more than 27% of articles that
opportunity for children with disabilities to attend studied some aspect of human functioning iden-
schools, resulted in greater opportunities for tifying positive constructs from 1975 to 1984,
employment and school and community inclu- slightly more than 44% from 1985 to 1994, and
sion, which led to innovations in efforts to pro- 63% from 1995 to 2004. From among all of these
mote community-based outcomes, like supported constructs, examinations of personal control,
employment. In fact, if one considers the basics of problem-solving, goal setting, and
supported employment, which emerged in the late self-determination constituted the largest per-
1970s to mid-1980s, it is a model for how person– centage of positive constructs studied (15% of
environment fit understandings of disability the 27% total from 1975 to 1984, 19% of 44%
impact supports provisions. At its core, supported total from 1985 to 1994, and almost 30% of the
employment begins with a person’s strengths and 63% total from 1995 to 2004).
interests, considers the demands of the context The chapters in this text reflect topics that
(work site, job, etc.), and implements actions that provide applications of positive psychology and
improve personal capacity and modify the strengths-based practices to the field of intellec-
demands of the environment. In essence, the field tual disability as they lead to a new paradigm for
began to move toward practices driven by per- disability supports. Some such topics
son–environment fit models of disability before (self-determination, positive behavior supports,
such models were widely promulgated. quality of life, supported and customized
This text takes the unequivocal position that employment) are well established practices in the
historical pathology-based models of disability field. Other topics (problem-solving and decision
have run their course and are no longer relevant, making, goal setting and attainment) are topics
although it must be noted that they are still far that are discussed, but may have had limited
too prevalent in society. The success of people applications in the field. Still other topics have
with disabilities in all aspects of life as a result of had very little coverage in the field (mindfulness,
civil protections and equal opportunities has character strengths, hope). And, one must note, if
made pathology-based understandings of dis- one examines the topics that are listed in typical
abilities irrelevant or inaccurate. It is well past texts pertaining to positive psychology, there are
time to begin to consider intellectual and devel- many topics that are simply still absent from the
opmental disabilities within a strengths-based discussion in the field of intellectual and devel-
focus. The chapters in the next sections of this opmental disabilities (optimism, creativity,
text do so within the lenses of positive psychol- curiosity, compassion, spirituality, etc.).
ogy and a supports model. For example, one of the most widely studied
Examining the literature in the field of intel- constructs in positive psychology is well-being
lectual and developmental disabilities suggests and all its facets. Happiness and life satisfaction
that the trends are toward these strengths-based are recognized as the pillars of emotional
approaches. Shogren, Wehmeyer, Buchanon, and well-being (e.g., subjective well-being, happi-
Lopez (2006) conducted a content analysis of ness, psychological well-being, social
30 years of the literature in the field of intellec- well-being). Diener, Lucas, and Oishi (2002)
tual disability to examine the degree to which defined subjective well-being as a person’s
research emphasized the strengths and capacities “cognitive and affective evaluations of his or her
of people with intellectual disability and the life with emotional reactions and cognitive
degree to which the literature base included judgements of fulfillment” (p. 63). Keyes and
constructs associated with positive psychology. Lopez (2002) elaborated on in this concept by
Shogren, Wehmeyer, and colleagues found a dividing subjective well-being concept into two
gradual progression of the implementation of groups: emotional well-being, which includes
constructs found in positive psychology across satisfaction or happiness; and positive
2 Strengths-Based Approaches to Intellectual … 19

functioning, which includes social well-being more regularly increased their well-being scores.
(social integration) and psychological well-being The authors suggested that improved fitness
(personal growth). Ryff and Singer (2002) char- might also influence psychological well-being.
acterized psychological well-being as a “decla- Additionally, we only located a few studies
ration of the highest levels of human examining lifestyle satisfaction and people with
functioning” (p. 542). Thus, in positive psy- intellectual disability. Bramston, Bruggerman,
chology, subjective well-being has been divided and Pretty (2002) focused on examining how
into two constructs: expressive emotions (pres- community connectedness could affect the life
ence or absence of happiness) and general satis- satisfaction of 132 Australian adolescents with
faction with life (Lucas-Carasco & intellectual disability and found a moderate cor-
Salavador-Carulla, 2012). relation between self-reported lifestyle satisfac-
And yet, while the numbers of studies of the tion and community belonging. Similarly,
constructs cited above (happiness, well-being, Schwartz and Rabinovitz (2003) investigated the
lifestyle satisfaction, etc.) numbers in the thou- life satisfaction of 93 Israeli young adults with
sands and thousands in the psychological litera- intellectual disability who lived in residences
ture, the studies that focus specifically on these their communities, though the focus of the study
constructs as they pertain to people with intellec- was mainly on relationships between resident life
tual disability are in the tens. (Note that the closely satisfaction scores and proxy estimates of resi-
related construct of quality life, represented in this dent life satisfaction by staff (they were highly
text, has direct connections to well-being and correlated). Finally, Shogren, Lopez, Wehmeyer,
satisfaction constructs, but research in this area Little, and Pressgrove (2006) explored associa-
focuses largely on systems that support quality of tions between hope, optimism, locus of control,
life; in providing an ecological framework for self-determination, and life satisfaction for ado-
promoting well-being, and not, as it were, research lescents with and without disabilities. These
on individual well-being or life satisfaction.) The constructs were highly correlated for all partici-
gist is, we know little about what contributes to pants, and hope and optimism directly predicted
happiness and well-being with regard to people life satisfaction.
with intellectual disability.
In a review of research pertaining to the
“well-being” construct and people with intellec- Conclusion
tual disability, we identified only a handful of
studies. For example, Rey, Extremera, Duran, The point of this brief summary of the applica-
and Ortiz-Tallo (2013) investigated the possible tion of the well-being and life satisfaction con-
contribution of emotional competence to the structs to people with intellectual disability was
subjective well-being of 139 adults with intel- to simply note that even in areas in positive
lectual disability in Spain. In addition to finding psychology that are well studied in the general
that emotional competence was a predictor of population, investigations with regard to people
well-being for these adults, the authors found that with intellectual disability are still limited. This
better understandings about regulating emotions is, we would argue, because too many people in
resulted in better coping skills when dealing with the field and in the general public still ascribe to
emotional issues and, thus, psychological models of disability that emphasize pathology
well-being might increase if people were pro- and deficit. As we move toward models that
vided opportunities to learn emotional regulation emphasize strengths, we anticipate that the liter-
skills. Carmeli, Orbach, Zinger-Vaknin, Morad, ature based on topics such as optimism,
and Merrick (2008) investigated physical activity well-being, compassion, and spirituality will
among 62 older adults with intellectual disability become a focal point for research and practice to
and found that a group that engaged in exercise support people with intellectual disability.
20 M.L. Wehmeyer et al.

The movement to a person–environment fit Luckasson, R., Borthwick-Duffy, S., Buntinx, W. H. E.,

model of disability opens the door for Coulter, D. L., Craig, E. M., Reeve, A., et al. (2002).
Mental retardation: Definition, classification, and
strengths-based approaches to disability through systems of supports (10th ed.). Washington DC:
the provision of supports that reduce the gap American Association on Mental Retardation.
between personal capacity and the demands of Prouty, R. W., Smith, G., & Lakin, K. C. (2006).
typical environments. The chapters in the next Residential services for persons with developmental
disabilities: Status and trends through 2005. Min-
section of this text provide information on the neapolis: University of Minnesota, Research and
practices that have emerged, at this point, to Training Center on Community Living/Institute on
apply these strengths-based, positive approaches Community Integration.
to intellectual and developmental disabilities. Rey, L., Extremera, N., Durán, A., & Ortiz-Tallo, M.
(2013). Subjective quality of life of people with
The next chapter examines the supports para- intellectual disabilities: The role of emotional compe-
digm and how supports and support needs are tence on their subjective well-being. Journal of
conceptualized and implemented. Applied Research in Intellectual Disabilities, 26(2),
146–156.
Ryff, C. D. & Singer, B. (2002). From social structure to
biology: Integrative science in pursuit of human health
and well-being. In C. R. Snyder and S. J. Lopez
References (Eds.), Handbook of positive psychology (pp. 541–
555). New York, NY: Oxford University Press.
Bramston, P., Bruggerman, K., & Pretty, G. (2002). Schalock, R. L., Borthwick-Duffy, S. A., Bradley, V. J.,
Community perspectives and subjective quality of life. Buntinx, W. H. E., Coulter, D. L., Craig, E. M., et al.
International Journal of Disability, Development and (2010). Intellectual disability: Definition, classifica-
Education, 49(4), 385–397. tion, and systems of supports (11th ed.). Washington
Carmeli, E., Orbach, I., Zinger-Vaknin, T., Morad, M., & DC: American Association on Intellectual and Devel-
Merrick, J. (2008). Physical training and well-being in opmental Disabilities.
older adults with mild intellectual disability: A Schalock, R. L. (2013). Introduction to the intellectual
Residential Care Study. Journal of Applied Research disability construct. In M. L. Wehmeyer (Ed.), The
in Intellectual Disabilities, 21(5), 457–465. story of intellectual disability: An evolution of mean-
Diener, E., Lucas, R. E., & Oishi, S. (2002). Subjective ing, understanding, and public perception (pp. 19–
well-being: The science of happiness and life satis- 46). Baltimore: Paul H. Brookes.
faction. In C. R. Snyder and S. J. Lopez (Eds.), Schwartz, C., & Rabinovitz, S. (2003). Life satisfaction of
Handbook of positive psychology (pp. 63–73). New people with intellectual disability living in community
York, NY: Oxford University Press. residences: Perceptions of the residents, their parents
Goldsmith, J. (1990). The paradigm shift: Transforming and staff members. Journal of Intellectual Disability
from an acute to chronic care model. Decisions in Research, 47(2), 75–84.
Imaging Economics, 14, 13–19. Shogren, K. A., Lopez, S. J., Wehmeyer, M. L., Little, T.
Grossman, H. J., Begab, M. J., Cantwell, D. P., Clements, D., & Pressgrove, C. L. (2006a). The role of positive
J. D., Eyman, R. K., Meyers, C. E., … Warren, S. A. psychology constructs in predicting life satisfaction in
(1983). Classification in mental retardation (8th edn.). adolescents with and without cognitive disabilities: An
Washington DC: American Association on Mental exploratory study. Journal of Positive Psychology, 1,
Deficiency. 37–52.
Keyes, C. L. M., & Lopez, S. J. (2002). Toward a science Shogren, K. A., Wehmeyer, M. L., Buchanan, C. L., &
of mental health: positive directions in diagnosis and Lopez, S. J. (2006b). The application of positive
interventions. In C. R. Snyder and S. J. Lopez (Eds.), psychology and self-determination to research in
Handbook of positive psychology (pp. 45–62). New intellectual disability: A content analysis of 30 years
York, NY: Oxford University Press. of literature. Research and Practice for Persons with
Lucas-Carrasco, R., & Salvador-Carulla, L. (2012). Life Severe Disabilities, 31(4), 338–345.
satisfaction in persons with intellectual disabilities. Shogren, K. A., Wehmeyer, M. L., & Singh, N. N.
Research in Developmental Disabilities, 33(4), 1103– (2017). Introduction to positive psychology. In K.
1109. A. Shogren, Toste, J., Mahal, S., & Wehmeyer, M. L.
Luckasson, R., Coulter, D. L., Polloway, E. A., Reiss, S., (Eds.), Handbook of positive psychology in intellec-
Schalock, R. L., Snell, M. E., … Stark, J. A. (1992). tual and developmental disabilities: Translating
Mental retardation: Definition, classification, and research into practice. New York, NY: Springer.
systems of supports (9th edn.). Washington DC: Smith, J. D., & Wehmeyer, M. L. (2012). Good blood,
American Association on Mental Retardation. bad blood: Science, nature, and the myth of the
2 Strengths-Based Approaches to Intellectual … 21

Kallikaks. Washington, DC: American Association on Author: A manual of classification relating to the
Intellectual and Developmental Disabilities. consequences of disease. Geneva.
Wehmeyer, M. L. (2013). The story of intellectual World Health Organization. (1999). ICD-10: Interna-
disability: An evolution of meaning, understanding, tional statistical classification of diseases and related
and public perception. Baltimore: Paul H. Brookes. health problems (10th edn., Vols. 1–3). Geneva:
Wickham, P. (2013). Poverty and the emergence of Author.
charity: Intellectual disability in the middle ages (500 World Health Organization. (2001). International classi-
CE to 1500 CE). In M. L. Wehmeyer (Ed.), The story fication of functioning, disability, and health (ICF).
of intellectual disability: An evolution of meaning, Geneva: Author.
understanding, and public perception (pp. 47–62). World Health Organization. (2002). Towards a common
Baltimore: Paul H. Brookes. language for functioning, disability and health.
World Health Organization. (1980). International classi- Geneva: Author.
fication of impairments, disabilities, and handicaps.

She is co-Editor of Remedial and Special Education and

Author Biographies Inclusion.
Michael L. Wehmeyer, Ph.D., is the Ross and Mariana Nirbhay N. Singh, Ph.D., BCBA-D, is Clinical Professor
Beach Distinguished Professor of Special Education and of Psychiatry and Health Behavior at the Medical College
Senior Scientist and Director, Beach Center on Disability, at of Georgia, Augusta University, Augusta, GA and CEO
the University of Kansas. Dr. Wehmeyer’s research focuses of MacTavish Behavioral Health, in Raleigh, NC. His
on self-determination, understanding and conceptualizing interests include mindfulness, behavioral and psychophar-
disability, the application of positive psychology to disability, macological treatments of individuals with diverse abili-
conceptualizing and measuring supports and support needs, ties, assistive technology, and mental health delivery
and applied cognitive technologies. He is the co-editor of systems. He is the Editor-in-Chief of three journals:
American Association on Intellectual and Developmental Journal of Child and Family Studies, Mindfulness, and
Disabilities ejournal, Inclusion. Advances in Neurodevelopmental Disorders, and Editor of
Karrie A. Shogren, Ph.D., is a Professor of Special Edu- three book series: Mindfulness in Behavioral Health,
cation, Senior Scientist at the Life Span Institute, and Evidence-based Practice in Behavioral Health, and Chil-
Director of the Kansas University Center on Developmental dren and Families.
Disabilities at the University of Kansas. Dr. Shogren has Hatice Uyanik, MA is a doctoral student in the Department
published extensively in the intellectual and developmental of Special Education at the University of Kansas. Her
disabilities field, and her research focuses on assessment and research interest is in self-determination, cultural diversity,
intervention in self-determination and positive psychology, supported decision-making, and the education of learners with
and the application of the supports model across the lifespan. more extensive support needs.
 The Supports Paradigm
and Intellectual and Developmental 3
Disabilities

James R. Thompson, Michael L. Wehmeyer,

Karrie A. Shogren and Hyojeong Seo

recognized as a superior means to guide work in

Introduction
the field of astronomy because planetary motion
could be far more accurately predicted with its
In the Structure of Scientific Revolutions, Tho-
application.
mas Kuhn (1970) posited that advances in a
The Copernican Revolution was not the sim-
scientific field proceed via paradigmatic shifts.
ply the result of Copernicus coming up with a
A classic example of a paradigmatic shift is the
novel idea out of the blue. Rather, he (and others
Copernican Revolution in the 1500s. Astron-
before him) was dissatisfied with the scope of
omers worked for over a thousand years to
inaccurate predictions and the contradictory
develop and refine mathematical approaches that
information that resulted from applying the
predicted astronomical occurrences (e.g., posi-
dominant paradigm. When errors and contradic-
tions of stars and constellations) based on the
tions emerging from the application of a para-
Ptolemaic paradigm, which held that the earth
digm become untenable, the search begins for a
was the center of the universe. Everything
better paradigm that provides more satisfactory
changed when Copernicus introduced his Helio-
solutions. As Kuhn (1970) pointed out, “Ptole-
centric paradigm (i.e., the Sun, not the Earth, was
maic astronomy had failed to solve its problems;
the center of the universe). As Galileo would
the time had come to give a competitor a chance”
surely attest, the new paradigm encountered
(p. 76).
some initial resistance. But it was eventually
In this chapter, we use the term paradigm to
mean the widely accepted truths, assumptions,
and viewpoints that guide people’s work in a
J.R. Thompson (&)
M.L. Wehmeyer
given field. Specifically, we refer to paradigms
K.A. Shogren
with regard to how the work by members of the
Beach Center on Disability/Kansas University
Center on Developmental Disabilities, University of field is conducted, in this case, what do services
Kansas, 1200 Sunnyside Ave., Rm. 3136, Lawrence, and supports for people with intellectual dis-
KS 66045, USA ability across contexts and domains look like?
e-mail: [email protected]
Chapter 2 discussed the myriad of factors that led
M.L. Wehmeyer to a paradigm shift in the field of intellectual and
e-mail: [email protected]
developmental disabilities, including changing
K.A. Shogren understandings of disability, increased legal
e-mail: [email protected]
protections against discrimination, improved
H. Seo interventions focused on the community, and the
Department of Special Education Gongju, Kongju
emergence of the self-advocacy field. The social
National University, University Road 56, Gongju,
ChungNam 32588, South Korea sciences and human services to people with
e-mail: [email protected] disabilities do not have paradigms that are

© Springer International Publishing AG 2017 23

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_3
24 J.R. Thompson et al.

comparable to those in the hard sciences, yet the Historic Paradigms in the Field
work of people in a field such as intellectual and of Intellectual and Developmental
developmental disabilities most certainly is dri- Disabilities
ven by widely accepted truths, assumptions, and
viewpoints. This chapter is focused on ways in If the Supports Paradigm is a new paradigm for
which the field has shifted (and continues to the field of intellectual and developmental dis-
shift) to a Supports Paradigm because it offers a abilities, it is reasonable to ask what paradigms
more satisfactory direction for practice to over- proceeded it, why were the previous paradigms
come obstacles that have impeded progress in found to be less than satisfactory, and in what
reaching the field’s ultimate goal of maximizing way does the Supports Paradigm provide better
opportunities for people with disabilities solutions. Thompson et al. (2014) suggested that
throughout their life span to experience a high two prior paradigms dominated the field at earlier
quality of life as full and valued participants in times, and remnants of their influence are evident
schools and adult society. to this date.
Butterworth (2002) offered an early descrip-
tion of the Supports Paradigm when he wrote that
the “New Supports Paradigm suggests that indi-
The Medical-Institutional Paradigm
viduals should first, without restriction, define
the lifestyles they prefer and the environments
Chapter 2 provided an overview of the
they want to access. Their goals and priorities
Medical-Institutional Paradigm, derived from
then become the basis for intensity and types of
pathology-based models of disability. These con-
support they need to succeed in these environ-
ceptualizations emphasized assessments to iden-
ments” (p. 85).
tify pathology, most notably intelligence testing;
Thompson, Schalock, Agosta, Teninty, and
segregation and homogeneous grouping; and,
Fortune (2014) expanded on Butterworth’s
eventually, eugenics and sterilization. The
description by noting:
Medical-Institutional Paradigm was in full bloom
Effectively arranging supports that are truly per- by the 1930s with intellectual disability being
sonalized is the overarching purpose that coalesces understood as a pathology, and people with intel-
the intent of public policies and funding, the
actions of jurisdictional agencies, the missions of lectual disability understood as defective human
community-level provider organizations, the beings who were not deserving of the same rights
activities of planning teams that are formed around as other citizens in the general population.
individuals with ID/DD, and the work of direct In hindsight, the shortcomings of the
support professionals (p. 87).
Medical-Institutional Paradigm are glaring. Being
As mentioned previously, a paradigm in a understood as person lacking a desirable trait and
multidisciplinary, human service field such as living in a society where institutions were the only
intellectual and developmental disabilities is an service option was a combination that resulted in
amalgamation of truths, assumptions, and view- lives of segregation from others in society with
points. It is a product of values that have devel- very few opportunities to explore personal inter-
oped over time as well as the knowledge gained ests and make contributions to the world. Addi-
from prior experience, which includes knowl- tionally, regardless of what now-archaic disability
edge obtained through scientific research. The label (e.g., feeblemindedness, mental deficiency,
discussion pertaining to the shift to mental retardation) was used, acquiring this diag-
strengths-based models of disability in Chap. 2 nosis made people vulnerable to having their most
illustrates the latter. basic human rights taken away.
3 The Supports Paradigm and Intellectual … 25

Advances in prevention and instruction. Of principle means making available to the mentally
course, not all of the work in the field of intel- retarded patterns and conditions of everyday life
lectual and developmental disabilities that was which are as close as possible to the norms and
completed during the time the patterns of the mainstream of society” (Nirje,
Medical-Institutional Paradigm dominated the 1969, p. 181). Normalization was antithetical to
field lacked merit. As Silverman (2009) the practice of institutionalizing people. There-
observed, certain causes of disability have been fore, normalization provided a compelling justi-
virtually eliminated in industrialized countries fication—both intellectually and morally—for
due to advances in medical research and inter- introducing public policies that promoted dein-
ventions [e.g., intellectual disability due to con- stitutionalization and expanded services offered
genital hypothryroidism and phenylketonuria to children and adults in local communities. By
(PKU) are completely preventable through new- the mid-1970s, normalization had become fully
born screening and treatment]. Moreover, the embraced as a philosophically unifying concept
application of principles of applied behavior in the USA.
analysis led to the development of effective Normalization forced policymakers and pro-
instructional strategies (e.g., see Brown, fessionals to ask straightforward, yet profound,
McDonnell, & Snell, 2015). questions such as “Why wouldn’t people with
Although knowledge gained from medical disabilities want the same types of life conditions
research focused on curing and/or preventing and experiences that are valued by the vast
specific conditions and psychoeducational majority of others from the general population?”;
research focused on identifying and refining “Wouldn’t it make sense that denying people
effective interventions remains relevant to work access to culturally valued settings and experi-
in the field today, as noted in the previous ences harms their learning and development, and
chapter, by the start of the 1950s there was an therefore exacerbates their limitations and prob-
increasing awareness that, on balance, the lems?”; and “Why are people wasting their lives
Medical-Institutional Paradigm was not promot- away in institutions, when they could be con-
ing satisfactory solutions for challenges facing tributing members of society?” Table 3.1 shows
the field. Parents of children with disabilities led Nirje’s normalization guidelines (i.e., what the
the way in rejecting practices that called for principle of normalization means in action)
narrow perspectives of their children that focused alongside Robert Perske’s (2004) reports of
on describing deficits, and they questioned why practices at the institution in which was working
the only publicly funded service options involved at the time he became aware of the normalization
institutional care (Wehmeyer, 2013). During the principle. Perske drew contrasts between his
1950s and 1960s, the Medical-Institutional daily work at the institution and Nirje’s “eight
Paradigm was discarded in favor of the planks of normalization” to illustrate how he
Normalization-Community Services Paradigm, came to question the need to institutionalize
which called for both people with disabilities and people and the wisdom of the
public funded services to be moved out of Medical-Institutional Paradigm.
institutions into local communities. Deinstitutionalization and community ser-
vices. The major implications of the
Normalization-Community Services Paradigm
The Normalization-Community for public policies were deinstitutionalization
Services Paradigm (i.e., move people out of institutions into local
communities and prevent new institutional
Normalization. The principle of normalization admissions) and establishing a community-based
was first introduced in Scandinavian countries in service system. Throughout the USA, large
the late 1950s, but was not widely introduced in “multipurpose institutions” that provided all
the USA until the 1960s. “The normalization services (i.e., residential, vocational, educational,
26 J.R. Thompson et al.

Table 3.1 Comparing Nirje’s (1969) guidelines to Perske’s (2004) experiences at an institution
Nirje’s (1969) normalization guidelines Perske’s (2004) reflections on institutional life
“Normalization means a normal rhythm of the day” “The rhythm of the day at the institution where I worked
(p. 183) (e.g., getting out of bed and getting dressed in was remarkably abnormal. All of our residents were
the morning; eating meals and snacks as the day dressed and fed before the 7 a.m. shift change. They
proceeded; having things to do, people to see, and were in bed by 8:30 in the evening.” (p. 147)
places to go during the day; not having to go to bed
earlier than same-age peers)
Normalization means a normal routine of life p. 183) “In the institution where I worked, the sleeping, eating,
(e.g., people live in one place, attend work or school in learning, working, and recreating took place within the
another, have leisure activities in lots of places, and same enclosed compound.” (p. 147)
every minute of the day is not structured with group
activities)
Normalization means to experience the normal rhythm “At my institution, special days such as Christmas,
of the year, with holidays and family days of personal Easter, and Independence Day were seen as ‘skeleton
significance (p. 183) (e.g., people refresh their bodies crew days.’ It was the staff members whose rhythm of
and minds by celebrating holidays and going on the year was honored.” (p. 147)
vacation)
Normalization also means an opportunity to undergo “Our residents did not receive the touching and
normal developmental experiences of the life cycle caressing that little children need. Later, they were
(p. 183) (e.g., children, youth, adults, and older adults denied the atmospheres in which adolescents normally
have different experiences in life based on their thrive. Still later, they would not enjoy atmospheres
physical, intellectual, and emotional wants and needs adult and elderly persons usually receive.” (p. 147)
during different periods of life)
The normalization principle also means that the “In my institution, the workers made all of the decisions.
choices, wishes, and desires of the mentally retarded ‘No, John, I can’t let you do that because if I did
themselves have to be taken into consideration as nearly everyone else on the ward would want to do it.’ ‘No,
as possible, and respected (p. 184) [e.g., choices John, what you are asking is inappropriate.’” (p. 147)
ranging from the lower stakes, everyday (choosing what
to wear) to the higher stakes, long-term (what vocation
to pursue) need to be available]
Normalization also means living in a bisexual world “Periodically, the recreation department scheduled a
(p. 184) (i.e., a world with both sexes). (e.g., date, Saturday night dance, but many staff members were
marry, and engage in consensual intimate and loving pressed into action, too - watching the residents like
relationships) hawks.” (p. 148)
Normalization means normal economic standards. “We kept real money out of the hands of our residents.
(p. 185) (e.g., being in control of one’s own money, There were no savings accounts.” (p. 148)
including spending it how one wishes to spend it)
Normalization means the standards of the physical “My institution contained wards of 40 persons. In each
facility should be the same as those regularly applied in ward one found a large room with 40 beds in two or
society (p. 185) (e.g., people with disabilities should not three long rows, a day room with many benches, and an
live in homes that are clearly substandard or different aide station in the center.” (p. 148)
than others)

leisure) in one place were replaced by an array of community-based settings over the past 50 years
service provider organizations in local commu- are striking. Today, there are fewer than 25,000
nities that offered a variety of services and pro- people with intellectual and developmental dis-
grams. Community-based residential, vocational, abilities living in state-run institutions (Larson
recreational, and educational services expanded et al., 2014). Conversely, Braddock et al. (2015)
rapidly throughout the 1970s and 1980s. reported that from 1982 to 2013 the number of
As discussed in Chap. 2, data showing the people nationwide living in settings with 6 or
decline of institutions and growth of fewer people increased from 33,000 to 505,000.
3 The Supports Paradigm and Intellectual … 27

Of course, inclusion in life in local neigh- special schools and special classes (Pyecha et al.,
borhoods and communities involves much more 1980). Children with intellectual and develop-
than housing. Residing in a local community mental disabilities remain among the most seg-
most certainly offered more and richer options regated populations in schools. Only 17.1% of
for inclusion in the full range of activities that children with intellectual disability and 13.1% of
constitute a life. However, in terms of children with multiple disabilities spend 80%
recreation-leisure services, most provider orga- more of their day in general education class-
nizations still focused efforts on “group activity” rooms—these are the two smallest percentages of
types of programs that were targeted only to the 13 disability categories counted by the fed-
people with disabilities, perpetuating models of eral government. Additionally, these two dis-
segregation that had prevailed for decades under ability groups are the most (proportionally)
this, supposedly, new paradigm (Hoge & Dat- represented in segregated programs, with 56.3%
tillo, 1995; Schleien & Werder, 1985). of children with intellectual disability and 70.7%
The same thing happened in other domains. In of children with multiple disabilities being edu-
terms of vocational services, the most common cated in general education settings for less 40%
approach during the Normalization-Community of their school day, or in “other environments”
Services era involved establishing a “community (e.g., special schools).
vocational center” where there was a continuum There can be little argument that many posi-
of programs that were designated by names such tive changes occurred as the result of the shift
as “day activity,” “prevocational work,” and from the Medical-Institutional Paradigm to the
“sheltered work” (typically the highest level). In Normalization-Community Integration Para-
sheltered work, the vocational center procured a digm. As time progressed, however, it became
contract from a community employer, and apparent that the Normalization-Community
workers with intellectual and developmental Integration Paradigm would only take the field
disabilities were paid on a piece rate basis (i.e., of intellectual and developmental disabilities so
based on the amount of work they completed). far, in large measure because of how disability
Some centers also had a competitive employment was understood during that era. It became
job component where workers were transitioned increasingly evident that to continue progressing
from sheltered employment to employment on a and more fully address the needs and concerns of
competitive job in the community, though people with disabilities and their families, a new
research by the end of the 1970s showed that paradigm was needed. The Supports Paradigm
moving upward through vocational preparation emerged as an alternative in the 1980s, and
levels and ultimately finding employment in a unlike the Normalization-Community Services
community job paying a competitive wage was Paradigm, the Supports Paradigm was linked to
very rare (US Department of Labor, 1979). This the understanding of disability introduced by the
remains the case to the current day (Cimera, ICIDH and ICF (Chap. 2) and to the
2011). Again, the “new” paradigm perpetuated person-environment fit model of disability asso-
old models of segregation because of the way ciated with these changes.
that people with intellectual and developmental
disabilities continued to be understood.
So, not surprisingly perhaps, when efforts to The Supports Paradigm
implement the new federal law pertaining to
access to education in the late 1970s occurred, Progress in an applied field such as intellectual
despite language in the legislation emphasizing and developmental disabilities is rarely, if ever,
education within general education settings with linear. Oftentimes, two steps forward are fol-
specially designed instruction, what emerged lowed by one step back. Nevertheless, an
were models where children with intellectual and important milestone in the field’s shift to Sup-
developmental disabilities were segregated in ports Paradigm occurred with the publication of
28 J.R. Thompson et al.

the of the Definition, Classification, and Systems public. Therefore, the readiness approach resul-
of Supports manual published by the American ted in people spending their lives segregated
Association on Mental Retardation (Luckasson from the rest of society; stuck in settings and
et al., 1992). As was discussed in detail in activities in which few others in the population
Chap. 2, this manual first introduced the social- would choose to spend time.
ecological or person-environment fit model to The contrasting Supports Paradigm perspec-
understanding intellectual disability. tive derived from person-environment fit models
of disability is that “[i]ntellectual disability is
best understood in terms of the fit between per-
How Person-Environment Fit Models sonal competency and the demands of commu-
of Disability Impact Practice nity environments. Understanding people this
way focuses professional efforts on modifying
Person-environment fit models, such as those the context by either changing the environment,
forwarded in ICF and the AAIDD 2010 Classi- such as is accomplished through universal
fication manual (see Chap. 2), facilitated a design, or introducing personalize supports”
shift to a new paradigm in several ways. (Thompson, 2013, p. 516). Evaluating whether
Pathology-based models view disability as a or not a person is ready for participation in
chronic medical condition, which, in turn, call for community activities and settings is not relevant
long-term treatment and care in specialized set- to a person-environment fit model of disability.
tings. Specialized settings, by Definition, limit What is relevant is evaluating whether or not
people’s opportunities to participate in the larger supports are in place that enable a person to be
society. Just as people who experience serious successful in typical environments. Therefore,
health problems need care in a hospital setting, when there is a lack of success, is not because
for many years it was assumed that people with people were not sufficiently ready, but rather it is
intellectual and developmental disabilities the result of supports that were not in place.
required treatment from specialized professionals The critical implication of the person-
in separate settings (e.g., institutions, sheltered environment fit model of disability for profes-
workshops, separate special education schools sional work is to prioritize time and energy on
and classes) and reintegration to the community (a) enabling people to improve their capacity,
was something that could only occur once people (b) modifying environments and activities so that
had progressed to the point that they were ready a person can more fully participate, and (c) pro-
to come back. viding personalized supports that enable more
Thus, an implication stemming from focusing successful participation. The ultimate goal or
on people’s deficits was a “readiness approach” purpose of a system that is based on person-
to entry into community life. The readiness environment fit models of disability is to enhance
approach called for people to be taught and to opportunities for people with disabilities to better
demonstrate prerequisite skills prior to having access and enjoy the people, places, and activi-
access to settings and activities that others in the ties that they value.
community value (Cimera, 2011). The problem Environmental modifications are undertaken
with the readiness approach is that people with to make settings and activities more accessible
intellectual and developmental disabilities have and to support function within those environ-
historically languished in readiness programs for ments. For example, providing a computer with
years. Most people never reach the point where an interface that allows both pictures and text
they are deemed to be ready to attend general might enable a person with reading difficulties
education classrooms, work on jobs for com- and memory limitations to use that computer
munity employers, or participate in recreational efficiently and effectively at work. Such an
activities and settings available to the general environmental modification is really no different
3 The Supports Paradigm and Intellectual … 29

than building a ramp to allow physical access to a Inclusive Education

building for a person with a physical disability—
both the computer modification and building Today’s emphasis on inclusive education is
modification are done to promote access to well-aligned with the Supports Paradigm and
locations and activities that would otherwise not with person-environment fit models of disability.
be available. That is, students with intellectual and develop-
Another way to improve the mental disabilities are viewed as learners who
person-environment fit is to provide individual- experience a mismatch between their personal
ized supports. Individualized supports are “re- competency and what they are expected to do in
sources and strategies that aim to promote the general education classrooms and schools.
development, education, interests, and personal Inclusive education practices are resources and
well-being of a person and that enhance indi- strategies (e.g., supports) that improve that fit
vidual functioning” (Luckasson et al., 2002, through environmental modifications and/or
p. 151). The first step in providing supports is to personalized supports. At the individual student
understand a person’s support needs. Thompson level, the focus of inclusive education is on
et al. (2009) defined support needs as “a psy- identifying, arranging, and implementing
chological construct referring to the pattern and accommodations, adaptations, and modifications
intensity of supports necessary for a person to (i.e., adjustments to the environment that allow
participate in activities linked with normative greater and more meaningful participation) and
human functioning” (p. 135). For supports to be providing personalized supports (e.g., peer
individualized, they must be identified, arranged, tutors, assistive technology) to encourage maxi-
and implemented based on a person’s support mal participation and enhance learning out-
needs and the life activities and settings in which comes. In describing what he calls the “third
they are engaged. Although support needs are generation” of inclusive practices, Wehmeyer
stable, they are not fixed. Moreover, people’s (2014) explained that
preferences change over time. Therefore, indi- These practices emphasize enhancing personal
vidualized support planning is an ongoing pro- capacity and modifying the context in which the
cess, and planning team members should student learns, including modification to the cur-
continually strive to make sure support plans are riculum itself, which reduces the gap between the
student’s capabilities and the demands of the
aligned with people’s current needs and aspira- environment. These practices include applying
tions (Thompson et al., 2015, 2016). universal design for learning (UDL), using edu-
In summary, a critical difference between cational and assistive technology, applying posi-
prior paradigms and the Supports Paradigm is tive behavior interventions and supports (PBIS),
and promoting access to the general education
that former paradigms called for addressing curriculum (p. 11).
deficits within the person and the Supports
Paradigm calls for addressing a person’s support
needs arising from a person-environment mis-
match. Understanding people with intellectual Supported Living
and developmental disabilities through a
social-ecological lens directs the attention of In 2012, the Board of Directors of the American
professionals toward identifying settings and life Association on Intellectual and Developmental
activities in which people want to participate, as Disabilities and the Congress of Delegates of the
well as the personalizing supports and environ- Arc of the USA endorsed the following statement
mental modifications people need to meaning- on Housing:
fully participate. Contemporary trends and best People with intellectual and/or developmental
practices, as well as changes in public policies, disabilities (I/DD), like all Americans, have a right
illustrate how the Supports Paradigm is shaping to live in their own homes, in the community.
Children and youth belong with families. Adults
the field today.
30 J.R. Thompson et al.

should control where and with whom they live, years upon years, and most often, the only way to
including having opportunities to rent or buy their jump to the top of the list is to experience a
own homes, and must have the freedom to choose
their daily routines and activities (AAIDD, 2012, “crisis” situation (e.g., a person’s parent dies and
para 1) there is no other support person available)
(Braddock et al., 2015).
As the position statement indicated, expecta- Despite inequitable resource allocation issues,
tions in the field of intellectual and develop- it is clear that Supports Paradigm has been
mental disabilities have moved well beyond driving much of the effort in the area of resi-
accessing a residence with an address in a com- dential supports for the past several decades. The
munity neighborhood. Lakin and Stancliffe supported living movement involves identifying
(2007) concisely summarized the goals of the and arranging personalized supports and making
supported living movement by stating: environmental modifications to enhance partici-
pation in life activities that are based on personal
• People will have “real homes” in places interests and preferences. Researchers have con-
where they “control their own front doors,” sistently found that the community provides
and choose their homes and the people with better life experiences than an institution, and a
whom they live. smaller setting in the community provides better
• Choice of settings for everyday living will not life experiences than a larger setting. Benefits
subsume choosing services and supports for include greater personal freedom, more choices,
those settings; that is, people will not be enhanced self-determination, more participation
compelled to choose certain living sites in social activities, fewer reports of loneliness,
because assistance they need is located only increased contact with family and friends, adap-
in those sites. tive behavior skill gains, and greater personal
• People will be helped to define the lifestyles satisfaction including a better sense of well-being
they want and supported in achieving them, and safety (see Amado, Stancliffe, McCarron, &
and where their experiences have been lim- McCallion, 2013; Howe, Horner, & Newton,
ited, people are helped to develop and express 1998a, b; Lakin & Stancliffe, 2007).
lifestyle preferences (p. 154).

As discussed previously, there have been Supported Employment

dramatic shifts as to “where” people with intel-
lectual and developmental disabilities live. Lakin As mentioned previously, the initial response to
and Stancliffe (2007) reported that between 1995 deinstitutionalization and the establishment of a
and 2005, the number of people receiving resi- community-based service system was the cre-
dential support (a) outside of homes they shared ation of vocational centers that offered a contin-
with family members and (b) in homes that were uum of day activity programs, some of which
owned or rented in their names increased from included the opportunity for paid work. Foremost
40,881 to 101,143. Larson et al.’s (2014) most among the many criticisms of these centers was
recent data show that in 2013 the number had the reality that very few people ever graduated to
increased to 503,826. Unfortunately, in the same paid work in community jobs. Starting in the
report Larson and colleagues indicated that there mid-1980s, the Support Employment movement
were 110,039 people who qualified for residen- provided an alternative to the work center
tial services who were on waiting lists for ser- approach. As Wehman, Brooke, Lau, and Targett
vices, but were not receiving any. The “waiting (2013) pointed out “[s]upported employment was
list issue” has been a perpetual problem in adult initially conceived as an employment support
supports for people with intellectual disability service for people with severe IDD, many of
and related developmental disabilities. People whom were spending their days in sheltered
have been known to remain on waiting lists for workshops and day activity centers” (p. 296).
3 The Supports Paradigm and Intellectual … 31

Although different models of supported excellent position to do exactly what Butterworth

employment have been proposed over time (e.g., (2002) indicated was fundamental to the Sup-
individual placement, small business, mobile ports Paradigm, namely that “individuals first,
work crew, enclave) (Wehman et al., 2013), the without restriction, define the lifestyles they
key features of supported employment are prefer and the environments they want to access”
(a) paid employment, (b) in an integrated work (p. 85).
setting, with the (c) the provision of ongoing
support that most other workers do not need.
All of the features associated with the Sup- Public Policies
ports Paradigm are evident in supported
employment. Supported employment begins with Trends in public policies (i.e., laws, mandates,
respecting people’s choices and preferences. regulations) over the past several decades also
Sometimes supports are needed to help people suggest that the field of intellectual and devel-
identify their vocational interests, especially in opmental disabilities is coalescing around the
cases where people have not had prior opportu- importance of providing supports that enable
nities to work on different types of jobs (Everson people with disabilities to fully participate in
& Reid, 1997; Horrocks & Morgan, 2009). Once school and society.
a person’s vocational goals, preferences, and Civil Rights Laws. The Developmental Dis-
priorities are established and a corresponding job abilities Assistance and Bill of Rights Act (2000)
opportunity is secured, the focus of supported states in its preamble that disability is a natural
employment is providing ongoing support to part of the human experience. Like gender, eth-
assure people are successful on their jobs. Just as nicity, height, sexual orientation, and eye color,
is done in inclusive education and supported disability is part of the landscape of individual
living, the Supports Paradigm calls for the pro- differences that confirms that no two people are
viding personalized supports and environmental exactly the same. The landmark American with
modifications to bridge the gap between people’s Disabilities Act (ADA) of 1990 codified into law
competencies and the demands of vocational that individuals with disabilities are entitled to
settings and activities. the same legal protection against discrimination
as other people who have been historically
marginalized and who’s civil rights have been
Self-determination denied. As President George H.W. Bush stated
when signing of the law:
Since the early 1990s, there has been a growing
emphasis on enabling people with intellectual This act is powerful in its simplicity. It will ensure
that people with disabilities are given the basic
and developmental disabilities to become the guarantees for which they have worked so long
primary causal agents in their own lives, to and so hard: independence, freedom of choice,
understand their rights and responsibilities, and control of their lives, the opportunity to blend fully
to advocate on their own behalf; all of which is and equally into the rich mosaic of the American
mainstream. Legally, it will provide our disabled
aligned with promoting self-determination. As community with a powerful expansion of protec-
discussed in a subsequent chapter, the wide- tions and then basic civil rights. It will guarantee
spread acceptance of self-determination as an fair and just access to the fruits of American life
important goal (see Wehmeyer, 2015) provides which we all must be able to enjoy. (U.S. EEOC,
nd.)
additional evidence that work in the today’s field
of intellectual and developmental disabilities is Self-directed supports. The Medicaid Home
coalescing around the Supports Paradigm. People and Community-Based Waiver Services (HCBS)
with opportunities to make choices, the power to program has become the primary means of
make decisions, and who have developed funding for community-based services in the
self-determination skills over time are in an USA, particularly long-term residential services.
32 J.R. Thompson et al.

First authorized by Congress in 1981, federal programs, people with disabilities and their
HCBS “Waiver” spending has grown extensively families make choices about the supports they
over the past three decades, from $1.2 million in receive. Moreover, individualized budgeting
1982 to $31.4 billion in 2013 (Braddock et al., (based on interests, activities, and support needs)
2015). Home and Community-Based Waiver and the authority to employ staff and contract
Services programs are called “waiver” programs with programs enhances budget flexibility and
because states receive permission from the fed- provides opportunities for more efficient use of
eral government to waive certain resources. Individuals and families will not be
requirements/rules associated with the federal inclined to purchase redundant services nor will
government’s Medicaid program. Most states they use resources for services they perceive to
have multiple waiver programs, targeting differ- be ineffectual.
ent groups of people and offering different levels Education regulations. From the time it was
of service (e.g., offering different benefits to first enacted, what is now referred to as the
groups such as children and adults with physical Individuals with Disabilities Education Act
disabilities, children and adults with develop- (IDEA) stipulated that parents had the right to
mental disabilities, people over age 65), and no participate in educational decision making and
two states are exactly the same. made it clear that parents did not have to meekly
An analyses-state HCBS program is well abide by decisions their school district made with
beyond the scope of this chapter, but Ng, Har- which they did not agree. Due process proce-
rington, Musumeci, and Reaves (2015) reported dures were included in the law that assured par-
that in 2014 there were 42 states offering some ents had a mechanism to appeal to an
forms of self-direction in at least one of their independent third-party when disagreeing with
waiver programs. Depending on the state, their school district’s decisions. The reautho-
self-directed support programs may also be rizations of the law continued to expand the
known as consumer-directed support as well as leverage of parents and students in educational
participant-directed support programs. These planning and decision-making processes. In
programs provide people with disabilities and particular, the 1997 reauthorization strengthened
their families with funding to directly manage the influence of parents in evaluation, IEP
their supports. The funding goes straight to the development, and placement decisions, and
person and his/her family who use individually required schools to invite a student to attend the
set budgets to select, purchase, and manage their IEP when transition services and post-secondary
own supports within an established framework of goals were discussed (Yell, 2016).
guidelines. They can recruit, hire, and manage Today, involving students of all ages in edu-
their own direct support workers, or can contract cational planning is recognized as best practice
with one or more service provider organizations, (Thoma & Wehman, 2010). The continuing
or can do a combination (i.e., hire their people theme of students with disabilities and their
for certain things and service provider organiza- parents having assuming increased influence and
tions for others) (Hall-Lande, Hewitt, Bogen- control over their educational services and sup-
shutz, & LaLiberte, 2012). ports, and not simply being the passive recipients
The steady expansion of self-directed support of professionals’ decisions, is one which is in
programs over the past two decades (Ng et al., complete alignment with the concept of con-
2015) provides further evidence that the Supports sumer empowerment that is central to the Sup-
Paradigm is driving new policies and practices in ports Paradigm.
the field of intellectual and developmental dis- Supports and supplementary aids and ser-
abilities. By providing funding directly to the vices. The IDEA regulations specifically require
people receiving the services and the supports, schools to provide accommodations, modifica-
power is shifted from the provider organizations tions, supports, and supplementary aids and ser-
to the individual. With self-directed support vices that are needed by a student to be involved
3 The Supports Paradigm and Intellectual … 33

in and progressed in the general curriculum disabilities, and it was contrasted with paradigms
(Yell, 2016). Accommodations refer to any from prior eras. The Supports Paradigm is based
change that helps a students work around their on widespread agreement regarding the value of
disability in order to complete a task or partici- inclusion for children in schools and for adults in
pate in an activity. For example, allowing a stu- the broader society, the rejection of segregated
dent who has difficulty writing to provide service options, the importance of protecting and
answers orally is an accommodation. A modifi- expanding people’s civil rights, the need for
cation typically refers to changes in what is higher expectations in terms of personal out-
taught to or expected from a student. Making an comes, the significance of self-determination in
assignment easier so a student is not doing the pursuit of goals, the evolution of laws (e.g.,
same level of work as other students, but is still ADA, IDEA) and public policies (e.g.,
learning the same type of content, is an example self-directed support programs), changing pro-
of a modification. Supports have been defined fessional roles and practices (e.g., special edu-
previously in the chapter, but in terms of IDEA, cator as inclusive education facilitator), and new
they are usually referenced in terms of resources approaches to service organization and delivery
introduced in general education classrooms that (e.g., supported employment, supported living).
enable a child’s participation (e.g., assistance All of the trends mentioned above can logically
from a paraprofessional in certain activities). coalesce under the umbrella of the Supports
Supplementary aids and services include adap- Paradigm.
tive equipment (e.g., special chair to keep a child In summary, the Supports Paradigm encom-
comfortable and upright), assistive technology passes the following tenets:
(e.g., augmentative communication device to
assist a child in communicating), and adaptive • The most important difference between peo-
materials (e.g., highlighted notes in a text book to ple with intellectual and related develop-
assist the child in getting meaning from exposi- mental disabilities and the general population
tory text written above his or her reading level) is the former require more intense support in
(Thompson et al., 2016). order to fully participate in school and
Clearly, schools have the responsibility to society.
provide supports in the general education class- • People’s support needs can be effectively
room that maximize a student’s learning and addressed by modifying the environment
participation, which is a concept fundamental to and/or providing personalized supports.
the Supports Paradigm. Given the expanse of • Supports provided to people should be pro-
knowledge on how to support children with vided in integrated, community settings and
intellectual disabilities and related developmental be as unobtrusive as possible.
disabilities in general education settings (e.g., see • Supports should be arranged to build on (i.e.,
Kurth & Gross, 2015) as well as abundant take advantage of) people’s relative strengths
examples of how supports can be used to enable as well as address their relative limitations.
children with even the most complex needs to • Support planning and provision is most
meaningfully participate in general education effective when people with disabilities have
classrooms (Giangreco, Dymond, & Shogren, developed self-determination skills and
2015). become fully vested (i.e., have acquired a
sense of ownership) in their personal goals
and aspirations and are operating as the causal
Conclusion agents in their lives.
• When provided the opportunity to establish
In this chapter, we proposed that the Supports optimistic goals and provided Systems of
Paradigm has become the dominant paradigm in Support that build upon personal strengths
the field of intellectual and developmental while addressing gaps between personal
34 J.R. Thompson et al.

competence and environmental demands, Giangreco, M. F., Dymond, S. K., & Shogren, K. A. (2015).
people’s personal outcomes and quality of life Educating students with severe disabilities. In F.
Brown, J. McDonnell, & M. E. Snell (Eds.), Instruction
will improve. of students with severe disabilities (8th ed., pp. 1–27).
Upper Saddle River, NJ: Pearson/Merrill/Prentice Hall.
The final chapter in this section will discuss Hall-Lande, J., Hewitt, A., Bogenschutz, M., & LaLib-
issues pertaining to assessment in the era of erte, T. (2012). County administrator perspectives on
the implementation of self-directed supports. Journal
supports and strengths-based approaches to dis- of Disability Policy Studies, 22, 247–256.
ability. The remainder of the text involves Howe, J., Horner, R. H., & Newton, J. S. (1998a).
chapters that articulate how to turn theory into Comparison of supported living and traditional resi-
practice with regard to the application of positive dential services in the state of Oregon. Mental
Retardation, 36, 1–11.
psychology to the field of intellectual and Hoge, G., & Dattilo, J. (1995). Recreation participation
developmental disabilities. patterns of adults with mental retardation. Education
and Training in Mental Retardation and Develop-
mental Disabilities, 30, 283–298.
Horrocks, E. L., & Morgan, R. L. (2009). Comparison of
a video-based assessment and a multiple stimulus
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& Fortune, J. (2014). How the supports paradigm is Hall.

Author Biographies American Association on Intellectual and Developmental

James R. Thompson, Ph.D., is a Professor of Special Edu- Disabilities ejournal, Inclusion.
cation, Senior Scientist at the Life Span Institute, and Asso- Karrie A. Shogren, Ph.D., is a Professor of Special Educa-
ciate Director of the Kansas University Center on tion, Senior Scientist at the Life Span Institute, and Director
Developmental Disabilities at the University of Kansas. Dr. of the Kansas University Center on Developmental Disabili-
Thompson has published extensively in the intellectual and ties at the University of Kansas. Dr. Shogren has published
developmental disabilities field, with a focus on support needs extensively in the intellectual and developmental disabilities
assessment and planning. He is Editor of Intellectual and field, and her research focuses on assessment and intervention
Developmental Disabilities. in self-determination and positive psychology, and the
Michael L. Wehmeyer, Ph.D., is the Ross and Mariana application of the supports model across the lifespan. She is
Beach Distinguished Professor of Special Education and co-Editor of Remedial and Special Education and Inclusion.
Senior Scientist and Director, Beach Center on Disability, at Hyojeong Seo, Ph.D., is an Assistant Professor of Special
the University of Kansas. Dr. Wehmeyer’s research focuses Education at the Kongju National University, South Korea.
on self-determination, understanding and conceptualizing Dr. Seo’s research focuses on efforts to promote the
disability, the application of positive psychology to disability, self-determination of students and adults with disabilities,
conceptualizing and measuring supports and support needs, systems that support positive psychology, and support needs
and applied cognitive technologies. He is the co-editor of assessment and support planning.
 Assessment in the Application
of Positive Psychology to Intellectual 4
and Developmental Disabilities

Karrie A. Shogren, James R. Thompson,

Michael L. Wehmeyer, Hyojeong Seo
and Mayumi Hagiwara

As described in Chap. 1, positive psychology be used to identify and build upon personal
emphasizes the importance of strengths-based strengths to promote personal growth and out-
approaches to understanding human functioning. comes. Thus, a central focus of the operational-
However, just as deficits-based models have ization of new paradigms within positive
dominated the fields of psychology and disability psychology and disability has been the develop-
so have deficit-based assessments. Assessment ment of new assessment approaches that are
tools utilized in the intellectual disability field strengths-based and enable the identification of
have emphasized the quantification of deficits, strengths, abilities, values, interests, and prefer-
typically deficits in intellectual functioning and ences to guide intervention to enhance valued
adaptive behavior, rather than the identification personal outcomes.
of strengths. Assessing only deficits in func- Given the role of positive psychological
tioning reinforced the focus on remediation and assessment in the implementation of a
“fixing problems,” rather than identifying and strengths-based approach, the purpose of this
building on strengths and assets. Central to chapter is to highlight emerging directions in
implementing a strengths-based approach is positive psychological assessment and discuss
having strengths-based assessment tools that can specific applications in the field of intellectual
and developmental disabilities with a focus on
strengths-based assessments that have been
developed and used with people with intellectual
K.A. Shogren (&)
J.R. Thompson
and developmental disabilities.
M.L. Wehmeyer
M. Hagiwara
Beach Center on Disability, Kansas University
Center on Developmental Disabilities, University of
Kansas, 1200 Sunnyside Ave., Rm. 3136, Lawrence, Positive Psychological Assessment
KS 66045, USA and Practice
e-mail: [email protected]
J.R. Thompson As mentioned previously, developing measure-
e-mail: [email protected] ment tools that enable the assessment of
M.L. Wehmeyer strengths and positive psychology constructs is
e-mail: [email protected] critical to advancing positive psychological
M. Hagiwara assessment and practice. As Lopez and Snyder
e-mail: [email protected]
(2003) wrote “by only focusing on weaknesses,
H. Seo psychologists have perpetuated an assessment
Kongju National University, Road 56 process that is out of balance” (p. 5). If only
(ShinGwanDong 182), Kongju, ChungNam 32588,
South Korea weaknesses and deficits are measured during the
e-mail: [email protected] assessment process, it is likely that only

© Springer International Publishing AG 2017 37

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_4
38 K.A. Shogren et al.

weaknesses and deficits will be targeted with questions are selected to ensure that they reflect
interventions and support derived from the the diversity present in society and that each
assessment process. This is not only to suggest person experiences. The model’s authors also
that assessing needs and areas that could be tar- provided a comprehensive summary of
geted for improvement should not be a part of the strengths-based assessment tools related to an
assessment process, but by also assessing array of positive psychological constructs and
strengths and assets, a more balanced picture can outcomes, including attachment, career develop-
be developed and an understanding of strengths ment, coping, emotions, forgiveness, grit, grati-
and assets can be leveraged to enhance personal tude, hope, humor, mindfulness, optimism,
outcomes. personal growth, meaning, quality of life, religion
Within the subfield of counseling psychology, and spirituality, satisfaction, self-compassion,
which is closely aligned with positive psychol- self-efficacy, self-esteem, strengths, well-being,
ogy, a framework has been developed to promote and therapy processes and outcomes. Several of
an increased focus on assessing strengths aligned these constructs and associated measures will be
with positive psychology as part of the counsel- discussed in greater detail in this and other
ing intake and treatment plan development pro- chapters, with a specific focus on their application
cess. This framework, the Comprehensive Model in the field of intellectual and developmental
of Positive Psychological Assessment (CMPPA; disabilities. However, what this list communi-
Owens, Magyar-Moe, & Lopez, 2015), is a cates is the wide array of assessment tools that are
seven-step process that can be used by clinicians available both to counseling psychologists and
to develop—through interviews, tests, and others interested in understanding and supporting
observations—a balanced picture of strengths the use and development of strengths. For
and weaknesses and enables the development of example, measures of hope, well-being, and
a balanced approach to the counseling process. character strengths developed in the general
An important aspect of the model that has gen- positive psychology field have been validated
eralizability beyond the field of counseling psy- with people with intellectual and developmental
chology is its emphasis on practitioners being disabilities (Shogren, Lopez, Wehmeyer, Little,
aware and reflective of their own perspectives & Pressgrove, 2006; Shogren, Wehmeyer, Lang,
and practices, and how this influences the bal- & Niemiec, 2016), meaning these tools can be
ance achieved in the assessment process. For reliability used to identify and develop strengths
example, the first three steps of the CMPPA by practitioners working with people with intel-
model are directly related to the practitioner and lectual and developmental disabilities.
their actions, not the actual assessment process. In the CMPPA model, only after these initial
The first step asks the practitioner to reflect on three steps targeting practitioner behaviors and
their own background, values, and biases. This is attitudes are completed should the practitioner
to ensure that one’s own cultural background begin to gather data from the person with regard
is understood, as well as its influences on what is to strengths and weaknesses and use this data to
considered a strength and a weakness. Practi- build a plan to support the person in addressing
tioners must acknowledge that the people they are their areas of need. While this model was not
supporting may have differing values that must be developed for, nor tested with people with
considered in the assessment process. The second intellectual and developmental disabilities, the
step asks practitioners to reflect on and ensure that notion of assessing and building on strengths in
they understand that all people have both the process of building individualized support
strengths and weaknesses and that without plans for children and adults with intellectual and
understanding the strengths and assets a person developmental disabilities is central to the
has to build upon, those strengths and assets may application of positive psychology practices to
be overlooked. The third step provides guidance the intellectual disability field, as further descri-
related to how initial paperwork and interview bed in Chaps. 5–24 of this handbook. While
4 Assessment in the Application of Positive Psychology … 39

these chapters will provide depth of coverage on evaluation, and the “academic, developmental,
specific applications of positive psychology and and functional needs of the child.” Further, for
the intervention and assessment approaches youth with disabilities who are planning for the
aligned with these areas, in the remainder of this transition from school to the adult world, the law
chapter, we will discuss emerging directions in stated that transition services must take into the
the application of positive psychology assess- “child’s strengths, preferences, and interests.”
ment in the field of intellectual and develop- Each of these statements presumes the role of the
mental disabilities, setting the stage for later strength-based assessment in the educational
discussions of the application of positive assessment and IEP development and transition
psychology. planning processes. And, researchers have
developed tools that are strengths-based in the
disability field from which meaningful IEP and
Positive Psychological Assessment transition goals can be developed (Epstein,
and Intellectual and Developmental 2004); however, in practice, deficit-based
Disabilities assessments still dominate (Shogren, 2013),
perhaps because of a lack of frameworks such as
As described in Chap. 2, the person-environment those introduced in counseling psychology field
fit model of disability defines disability by the to organize strengths-based assessment approa-
interaction of personal competencies and envi- ches in the context of education planning. Just as
ronmental demands. Assessing the fit (or lack operationalized in the CMPPA model, change is
thereof) between personal competencies and needed not only in how educational practitioners
environmental demands is critical to identifying approach assessment, including considerations
the supports needed by a person with an intel- related to selection of assessment tools, but also
lectual or developmental disability to achieve the beliefs about the assessment and the role of
outcomes they want in life. However, central to identifying and building on strengths and assets
this perspective is ensuring that, when develop- in education planning.
ing an understanding of both personal compe- Strengths-based assessment is also increas-
tencies and environmental demands, the person is ingly being recognized as a critical part of
directing this process. The assessment of per- planning for supports and services in adulthood
sonal competencies can be strengths-based, using for people with intellectual and developmental
tools aligned with positive psychological con- disabilities. Much of this focus has been driven
structs described previously. Further, under- by the growing emphasis on the multiple factors
standing environmental demands must be that influence human functioning and the focus
directly linked to the community environments on personal outcomes, particularly the enhance-
that a person with a disability accesses based on ment of individual quality of life. In terms of the
their age, culture, and preferences and interests. multiple factors that influence human function-
A fundamental premise of the social–ecological ing, Schalock et al. (2010) introduced a multi-
model is that such environments are dimensional framework of human functioning
age-appropriate and inclusive. that defined five domains that influence human
The movement toward strengths-based functioning: intellectual functioning, adaptive
assessment in the intellectual and developmen- behavior, health, participation, and context.
tal field is increasingly reflected in policy. For Schalock et al. (2010) asserted that only by
example, the Individuals with Disabilities Edu- understanding each of these domains, their rela-
cation Act (2004) stated that in developing a tionship to personal outcomes, and the role of
student’s individualized education program support in mediating the relationship between
(IEP), the IEP team must consider “the strengths strengths and weaknesses in each of these
of the child” as well as the concerns of the par- domains and outcomes can enhance human
ents, the results of the initial or most recent functioning result. Schalock et al. (2010)
40 K.A. Shogren et al.

acknowledged that in the intellectual disability Support Needs Assessment

field, most of the emphasis has been placed on
deficits in the first two domains, intellectual As described previously, a major focus in the
functioning and adaptive behavior. Clearly, there person-environment fit model of disability is to
is a need for the adoption of strengths-based identify the supports needed due to the mismatch
approaches and tools to understand functioning between personal competencies (i.e., personal
across each of the domains, to enable the iden- strengths and weaknesses across the domains of
tification of supports that enhance outcomes. human functioning) and environmental demands.
Subsequent chapters will provide information on We discussed previously the importance of the
strengths-based assessments and interventions in reference environment being inclusive, commu-
multiple domains related to adaptive behavior, nity environments that are aligned with the
health, participation, and context. interests, preferences, and values of people with
In addition to the emphasis on a multidimen- disabilities. We also mentioned that the primary
sional framework for human functioning, there focus, historically, of assessment in intellectual
has also been a growing emphasis on assessing disability had been quantifying deficits in intel-
and evaluating the quality of supports and ser- lectual functioning and adaptive behavior, rather
vices based on personal outcomes. Historically, than assessing the mismatch between personal
the focus tended to be on program outcomes competencies and environmental demands. To
(e.g., dollars spent and numbers served), but address the lack of tools available to identify
there was limited focus on if supports and ser- these mismatches and the intensity of supports a
vices were leading to the outcomes people with person needs to function in community envi-
intellectual and developmental disabilities wan- ronments, there was a need for new tools that
ted in their lives. Shifts, however, have placed specifically examined support needs aligned with
growing emphasis on the assessment of quality a supports model of examining human func-
of supports and services aligned with the out- tioning. Such tools do not focus on what a person
comes desired by people with intellectual and cannot do; instead, they focus on what a person
developmental disabilities (Bradley & Moseley, needs to be successful. Chapter 3 provide an
2007). Chapter 9 will provide further discussion introduction to the supports model and its
on the emergence of quality of life assessment implications for building strengths-based systems
frameworks in the disability field, highlighting of supports, but in this section, we will describe
the impact of these frameworks on supports, an assessment tool, the Supports Intensity Scale
services, and outcomes assessment. —Children’s and Adult Version—that was cre-
ated to enable the assessment of the psycholog-
ical construct of support needs, defined as the
Strengths-based Assessment “pattern and intensity of support a person
in the Intellectual requires to participate in activities associated
and Developmental Disability Field with typical human functioning” (Thompson
et al., 2009, p. 135).
As mentioned previously, tools have emerged The Supports Intensity Scale (SIS; Thompson
within the disability field that align with positive et al., 2004) was the first standardized measure
psychological assessment principles and prac- developed to assess the support needs of adults
tices, and provide opportunities to identify and with intellectual and developmental disabilities.
build on strengths. In the following sections, we It was developed to align with the social–eco-
briefly review work within the intellectual and logical model of disability, and assesses the type,
developmental disability field that supports frequency, and duration of supports needed by
strengths-based approaches to assessment and adults with intellectual and developmental dis-
supports planning. abilities to participate in seven key adult life
4 Assessment in the Application of Positive Psychology … 41

domains, Home Living, Community Living, domains are unique to the SIS-C and replaced the
Lifelong Learning, Employment, Health and domains of Lifelong Learning and Employment
Safety, Social Activities, and Protection and domains on the SIS-A. Like the adult version, the
Advocacy. The scale also asks a series of ques- SIS-C has an exceptional medical and behavioral
tions about the presence of exceptional medical support needs section that provides information
and behavioral support needs that may influence about medical conditions and challenging
support needs, consistent with the multidimen- behaviors that create unique support needs for
sional model of human functioning. children regardless of their relative intensity of
An interviewer works with two respondents support needs in other domains.
who know the personal with an intellectual dis- Assessment information derived from the
ability well to complete the items on the scale. SIS-A and SIS-C provides a profile of the sup-
The scale was standardized for adults ages 16– ports needed by a child, adolescent, or adult with
64 years, and standardized scores (which provide intellectual and developmental disabilities. Sup-
an indication of the support needs of the person port teams, which can include IEP/ISP teams,
in relation to the population of people with person-centered planning teams, or a network of
intellectual and developmental disabilities) for friends and family, can then use this information
overall support needs, as well as each of the life to identify specific and personalized supports that
domains mentioned previously. The SIS has been build on the interests, preferences, and values of
widely adopted, nationally and internationally by a person, enabling the person to achieve out-
intellectual and developmental disability organi- comes they value in their community.
zations to facilitate individualized support plan-
ning and inform decision-making in regard to the
allocation of resources. Self-determination Assessment
Given the widespread use of the SIS, a
refreshed version of the original scale, the The self-determination construct has been
SIS-Adult Version (SIS-A; Thompson et al., aligned with the field of positive psychology,
2015a) was published in 2015, which included generally, and has received significant attention
an updated User’s Guide (Thompson et al., in the intellectual and development disability
2015b) that provided additional information on field since the early 1990s. The focus on
the administration of the assessment and the use self-determination in the disability field emerged
of assessment data. Further, the need for a tool largely because of systematic advocacy by peo-
that could be used with children and youth with ple with intellectual and developmental disabili-
intellectual and developmental disabilities was ties for the right to direct their own lives.
identified, leading to the development of the Promoting self-determination has been identified
SIS-Children’s Version (SIS-C; Thompson et al., as a means of enabling youth and young adults to
2016). The SIS-C was developed using the develop the skills they would need to direct their
SIS-A framework, but the life domains were own lives and achieve outcomes they value.
modified, as were items, to reflect environmental Chapter 5 provides further detail on the
demands faced by children and youth ages from self-determination construct and practices that
5 to 16 years. Thus, there is not only some promote the development of self-determination.
overlap between domains on the SIS-A and However, to understand and promote self-
SIS-C, but also differences to reflect environ- determination, assessments of self-determination
ments typically encountered by children. The skills and opportunities were needed. In the early
SIS-C includes seven support need domains: 1990s, several research teams developed tools
Home Life, Community and Neighborhood, that could be used to understand
School Participation, School Learning, Health self-determination in adolescents and adults with
and Safety, Social, and Advocacy Activities. intellectual and developmental disabilities. Two
Thus, the School Participation and Learning widely used assessments developed during this
42 K.A. Shogren et al.

time include The Arc’s Self-Determination Scale with and without disabilities aged 13–22 and
(Wehmeyer & Kelchner, 1995) and the American includes both a student self-report as well as an
Institutes for Research (AIR) Self-Determination “other” report that can be completed by teachers
Scale (Wolman, Campeau, Dubois, Mithaug, & or parents. Next steps will include the develop-
Stolarski, 1994). The Arc’s Self-Determination ment of an adult version of the scale.
Scale was aligned with the functional model of The scale assesses three essential characteris-
self-determination (Wehmeyer, 1999) and mea- tics of self-determined action: volitional action,
sured overall self-determination along with its agentic action, and action-control beliefs. Multi-
essential characteristics which included: auton- ple constructs, including autonomy,
omy, self-regulation, psychological empower- self-initiation, self-direction, pathways thinking,
ment, and self-realization. The AIR Self- self-regulation, psychological empowerment,
Determination Scale focuses on assessing both self-realization, and control expectancy, are
student capacity for self-determination, as well as assessed within each of these essential charac-
the opportunities available in the environment, teristics. Pilot testing of the scale has suggested
and included reports from youth, parents, and its reliability and validity in students with and
teachers. Each assessment has been used in without disabilities (Shogren, et al., in press (b)),
research to examine opportunities for providing a means of understanding
self-determination (Carter, Lane, Pierson, & self-determination. The scale is being validated
Glaeser, 2006; Carter, Owens, Trainor, Sun, & with students with and without disabilities to
Swedeen, 2009) and the relationships between ensure that, in inclusive schools and communi-
self-determination and other positive psychology ties, self-determination is viewed as relevant and
constructs, such as quality of life (Lachapelle important to understand for all students, ensuring
et al., 2005), hope, and satisfaction with life that students with intellectual and developmental
(Shogren et al., 2006), as well as the impact of disabilities get the supports they need to develop
interventions on post-school outcomes (Shogren, their self-determination skills.
Wehmeyer, Palmer, Rifenbark, & Little, 2015).
The Arc’s Self-Determination Scale has also
been used to explore the relationships between Emerging Application
self-determination and career development of Assessments from Positive
interventions in adults with disabilities (Shogren, Psychology to the Intellectual
et al., in press). and Developmental Disability Field
Recently, an effort was undertaken to update
existing measures of self-determination, aligning In addition to assessments that are developed for
measurement with developing theory in or emerge from the intellectual and develop-
self-determination (Shogren, et al., 2015) and in mental disability field, there is a growing
positive psychology. The Self-Determination recognition of the importance of ensuring that
Inventory System (Shogren et al., 2014a, b) tools developed in the field of positive psychol-
builds on previous research conducted with The ogy for all people are accessible, reliable, and
Arc’s Self-Determination Scale and the func- valid for people with intellectual and develop-
tional model of self-determination, aligning the mental disabilities.
assessment of self-determination with the latest For example, as will be further discussed in
iteration of the functional model, Causal Agency Chap. 13, within positive psychology, the
Theory (see Chap. 5), which addresses issues assessment of character strengths and virtues has
related to self-determination in the disability field received significant attention. A classification
as well as in the field of positive psychology system, the VIA Classification of Strengths
related to positive psychological assessment. The (Peterson & Seligman, 2004) (formerly referred
Self-Determination Inventory System is currently to as the “Values in Action Classification”), was
being validated with a large sample of students developed to provide a framework for defining,
4 Assessment in the Application of Positive Psychology … 43

classifying, and developing interventions to build lives of people with intellectual disability
on the strengths that people display. The (Woodard, 2009).
assessment provides rankings of 24 character In addition to assessments of character
strengths (e.g., creativity, bravery, strengths, researchers have also explored the
self-regulation, and humor) and six overarching assessment and measurement of other constructs
virtues (i.e., wisdom, courage, humanity, justice, associated with positive psychology, including
temperance, and transcendence), based on hope, well-being, and happiness. For example,
self-report. After identifying one’s highest rated researchers have developed observational
strengths, various activities have been developed assessments to identify indicators of happiness in
to use these strengths in new ways to enhance people with extensive and pervasive support
one’s life. Two assessment tools based on the needs who have difficulty communicating
VIA framework have been developed, the VIA through traditional means (Dillon & Carr, 2007).
Inventory of Strengths (VIA-IS; Peterson & Researchers have also identified tools developed
Seligman, 2004) and the VIA Inventory of in the broader field of positive psychology, such
Strengths for Youth (VIA-Youth; Park & Peter- as the Children’s Hope Scale (CHS, Snyder
son, 2006). The VIA-IS was developed for et al., 1997) a measure of hope; the Life Orien-
adults, and the VIA-Youth for youth, ages 10– tation Test-Revised (LOT-R, Scheier, Carver, &
17. Both have been extensively used in the Bridges, 1994) a measure of optimism; the
general population. Recent research with the Nowicki-Strickland Internal-External Scales
VIA-Youth has suggested that youth with dis- (ANS-IE, Nowicki & Duke, 1974) a measure of
abilities, including intellectual disability, are able locus of control; and the Satisfaction with Life
to self-report on their strengths and that the tool scale (SWL, Diener, Emmons, Larson, & Griffin,
is as reliable and valid for use with adolescents 1985) and the Self and Global subscales of the
with disabilities as it is for youth without dis- Multidimensional Life Satisfaction Scale
abilities (Shogren et al., 2016). Based on this (MSLSS; Huebner, 1994; Huebner, Laughlin,
work, administration guidelines for supporting Ash, & Gilman, 1998) measures of life satisfac-
youth with intellectual and developmental dis- tion, and validated these tools with populations
abilities were created (Shogren, Wehmeyer, with intellectual and developmental disabilities
Forber-Pratt, & Palmer, 2015) and ongoing work (Shogren et al., 2006). Each of these measures
is examining applications of the VIA-IS and the can be used to better understand strengths,
application of interventions that promote the use informing supports provided in multiple
and development of character strengths in ado- domains, including education, supports and ser-
lescents and adults with intellectual and devel- vices, therapy, and health (Baker & Blumberg,
opmental disabilities (Niemiec, Shogren, & 2011; Prout, 2009).
Wehmeyer, in press). Further information on
strategies to build on character strengths is
described in Chap. 13. Tools have also been Conclusions
developed for students with significant intellec-
tual disability to enable others to provide ratings Within the fields of positive psychology and
on their character strengths and use this infor- disability, issues of assessment are critical
mation to guide supports planning. For example, to moving forward the application of
the Assessment Scale for Positive Character strengths-based approaches. This chapter pro-
Traits-Developmental Disabilities (ASPeCT-DD) vided an overview of emerging directions in
tool was developed to measure strengths using an positive psychology assessment and explored
other-report format. The scale has been shown to broad implications and applications of positive
have reliability in measuring strengths and can be psychological assessment in the intellectual and
used to support strengths-based assessment that developmental disabilities field. The chapters in
incorporates the perspectives of people in the the next section on the Applications of Positive
44 K.A. Shogren et al.

Psychology in Intellectual and Developmental positive psychology. Education and Training in

Disabilities will further elaborate on ways that Autism and Developmental Disabilities.
Nowicki, S., & Duke, M. P. (1974). A locus of control
strengths-based assessments and approaches can scale for college as well as noncollege adults. Journal
be used to enhance outcomes for people with of Personality Assessment, 38, 136–137.
intellectual and developmental disabilities. Owens, R. L., Magyar-Moe, J. L., & Lopez, S. J. (2015).
Finding balance via positive psychological assessment
and conceptualization: Recommendations for practice.
The Counseling Psychologist, 43(5), 634–670. doi:10.
1177/0011000015584956
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135–146. doi:10.1111/j.1468-3148.2009.00494.x

Author Biographies
Karrie A. Shogren, Ph.D. is a Professor of Special
Education, Senior Scientist at the Life Span Institute, and assessment and planning. He is Editor of Intellectual and
Director of the Kansas University Center on Developmental Developmental Disabilities.
Disabilities at the University of Kansas. Dr. Shogren has Michael L. Wehmeyer, Ph.D. is the Ross and Mariana
published extensively in the intellectual and developmental Beach Distinguished Professor of Special Education and
disabilities field, and her research focuses on assessment and Senior Scientist and Director, Beach Center on Disability, at
intervention in self-determination and positive psychology, the University of Kansas. Dr. Wehmeyer’s research focuses
and the application of the supports model across the lifespan. on self-determination, understanding and conceptualizing
She is co-Editor of Remedial and Special Education and disability, the application of positive psychology to disability,
Inclusion. conceptualizing and measuring supports and support needs,
James R. Thompson, Ph.D. is a Professor of Special Edu- and applied cognitive technologies. He is the co-editor of
cation, Senior Scientist at the Life Span Institute, and Asso- American Association on Intellectual and Developmental
ciate Director of the Kansas University Center on Disabilities ejournal, Inclusion.
Developmental Disabilities at the University of Kansas. Dr. Hyojeong Seo, Ph.D. is an Assistant Professor of Special
Thompson has published extensively in the intellectual and Education at the Kongju National University, South Korea.
developmental disabilities field, with a focus on support needs Dr. Seo’s research focuses on efforts to promote the
46 K.A. Shogren et al.

self-determination of students and adults with disabilities, parent consultant in Japan and the U. S. Her research interests
systems that support positive psychology, and support needs include the application of self-determination across the life
assessment and support planning. span, especially to supporting a meaningful life after high
Mayumi Hagiwara, MS is a doctoral student at the school for individuals with intellectual and developmental
University of Kansas. Ms. Hagiwara has worked as a special disabilities.
education teacher at kindergarten through high school and a
 Part II
Applications of Positive Psychology in
Intellectual and Developmental
Disabilities
 Self-determination
5
Karrie A. Shogren, Michael L. Wehmeyer
and Kathryn M. Burke

focuses more explicitly on self-determination as

Introduction
a dispositional characteristic and the importance
of the creation not only of autonomy-supportive
Self-determination has been extensively studied
environments but also autonomy-supportive
within the fields of positive psychology and
instructional strategies that promote self-
disability, in parallel but complementary ways.
determination and causal agency. The purpose
Within positive psychology, Self-Determination
of the present chapter is to provide an overview
Theory (SDT), which is more fully discussed by
of Causal Agency Theory, describe its emergence
Shogren, Toste, Mahal, and Wehmeyer (2017),
and application in the intellectual and develop-
has been identified as falling within the param-
mental disability field, and provide an overview of
eters of positive psychology since the inception
practices to promote self-determination and causal
of the field. Self-Determination Theory is a
agency.
meta-theory of motivation (Ryan & Deci, 2000)
that highlights the importance of autonomous
motivation and the fulfillment of basic psycho-
logical needs for competence, relatedness, and
Emergence of Self-determination
autonomy. Self-Determination Theory has been
in the Intellectual
applied in the disability field (Deci & Chandler,
and Developmental Disability Field
1986), albeit in a limited fashion, with a focus on
Self-determination and Causal
how the creation of autonomy-supportive envi-
Agency Theory
ronments enables students to act in ways that
Self-determination has received significant
address their need for autonomy and to enhance
attention in the disability field in recent decades.
autonomous motivation and well-being. Within
The earliest use of the term, in relation to people
the disability field, Causal Agency Theory
with intellectual and developmental disabilities,
(Shogren, Wehmeyer, Palmer, Forber-Pratt,
was in 1972, when Bengt Nirje highlighted the
et al., 2015) emerged as a theoretical framework
importance of self-determination in his influen-
that draws from the work of SDT related to
tial writing on the normalization principle. Nirje
motivational aspects of self-determination, but
(1969, 1972) argued that people with disabilities,
as all people, deserved to be treated with respect
and to have access to their communities and to
typical activities and routines. Essential to this
was ensuring that people with disabilities had
K.A. Shogren (&)
M.L. Wehmeyer
K.M. Burke opportunities to make choices and to assert
University of Kansas, 1200 Sunnyside Ave., Rm
3136, Lawrence, KS 66045, USA themselves over their lives. As Nirje (1972)
e-mail: [email protected] wrote:

© Springer International Publishing AG 2017 49

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_5
50 K.A. Shogren et al.

One major facet of the normalization principle is to choices and decisions about their lives (Stan-
create conditions through which a [person with a cliffe, 1997, 2001; Stancliffe, Abery, & Smith,
disability] experiences the normal respect to which
any human is entitled. Thus, the choices, wishes, 2000; Stancliffe et al., 2011; Stancliffe & Weh-
desires and aspirations of a [person with a dis- meyer, 1995; Tichá et al., 2012). Further, data on
ability] have to be taken into consideration as the poor post-school outcomes of youth with
much as possible in actions affecting him. To disabilities transitioning from school to adult life
assert oneself with one’s family, friends, neigh-
bors, co-workers, other people, or vis-a-vis an (Blackorby & Wagner, 1996) and indications
agency is difficult for many people. It is especially that promoting self-determination was a way to
difficult for someone who has a disability or is address these disparate outcomes, led to signifi-
otherwise perceived as devalued. Thus, the road to cant attention being directed to developing
self-determination is indeed both difficult and
all-important (p. 177). interventions to support self-determination.
As a result, a focus emerged in the field of
Despite this early discussion of the impor- special education on promoting positive
tance of self-determination in the context of post-school outcomes by promoting the
supporting people with disabilities to live full self-determination of youth with intellectual and
lives in their communities, self-determination did developmental disabilities. Between 1990 and
not receive significant attention again in the 1994, the US Department of Education’s Office
intellectual and developmental disabilities field of Special Education Programs (OSEP) funded
until the 1990s, when it became a critical focus in 26 model demonstration projects to develop
the self-advocacy movement (Wehmeyer, methods, materials, and strategies to promote the
Bersani, & Gagne, 2000) as well within the self-determination of youth and young adults
growing emphasis on supporting the transition with disabilities during the transition from school
from school to adult life for students with to adult life (Sands & Wehmeyer, 1996; Ward,
disabilities (Wehmeyer, 1992). Essentially, 1996). These projects resulted in numerous
self-determination became recognized as a criti- interventions and curricula to promote
cal element of enabling people with disabilities to goal-setting and attainment, problem-solving,
direct their own lives and attain outcomes decision-making, and self-advocacy skills and
aligned with personal interests and preferences. specially designed instructional methods, mate-
Within the self-advocacy movement, there was a rials, and strategies to promote self-determination
strong focus on empowerment, and the rallying in students with disabilities (Carter-Ludi &
cry of, “Nothing about us, without us,” high- Martin, 1995; Field, Martin, Miller, Ward, &
lighted the emphasis people with intellectual and Wehmeyer, 1998; Martin & Marshall, 1996;
developmental disabilities placed on directing Sands & Wehmeyer, 1996; Serna & Lau-Smith,
their lives and leading the self-advocacy move- 1995; Van Reusen, Bos, Schumaker, & Deshler,
ment. In the transition field, skills associated with 1994; Wehmeyer, Agran, & Hughes, 1998).
self-determination (e.g., goal setting and attain- Several definitional frameworks for applying the
ment, choice making, decision making, problem self-determination construct also emerged
solving) were identified as central to enabling (Abery, 1994; Field, 1996; Field & Hoffman,
adolescents with intellectual and developmental 1994; Mithaug, 1996; Powers et al., 1996;
disabilities to become self-determined and to Wehmeyer, 1996; Wehmeyer, Abery, Mithaug,
identify, go after, and achieve the things they & Stancliffe, 2003; Wehmeyer, Kelchner, &
wanted in the future, namely community living, Richards, 1996). The assumption was that by
employment, and meaningful participation developing interventions and definitional frame-
(Ward, 1988, 1996). Self-determination emerged works to promote self-determination, enhanced
as a critical area of focus given not only the adult outcomes related to community participa-
personal experiences of people with disabilities, tion and employment would result.
but also the data suggesting the lack of oppor- One of the frameworks that emerged from
tunities for people with disabilities to make these efforts was the precursor to Causal Agency
5 Self-determination 51

Theory, the functional model of The definition includes several key terms that
self-determination (Wehmeyer, 1992). The are critical to understanding its meaning and
functional model focused on how to promote the application to the lives of people with intellectual
self-determination of youth with disabilities and and developmental disabilities. First, a disposi-
defined self-determined behavior as “the attitudes tional characteristic is an enduring tendency
and abilities required to act as the primary causal used to characterize and describe differences
agent in one’s life and to make choices regarding between people; it refers to a tendency to act or
one’s actions free from undue external influence think in a particular way, but presumes contex-
or interference” (p. 305). The theory emphasized tual variance (i.e., socio-contextual supports and
that people who are causal agents are people who opportunities and threats and impediments). As a
make or cause things to happen in their lives, dispositional characteristic, self-determination
rather than others (or other things) making them can be measured, and variance will be observed
act in certain ways. The functional model was across individuals and within individuals over
empirically validated (Wehmeyer et al., 1996) time, particularly as the context changes (e.g.,
and assessments (Wehmeyer & Kelchner, 1995) supports and opportunities are provided for
and interventions (Wehmeyer, Palmer, Agran, self-determined action). And, as people with
Mithaug, & Martin, 2000) developed to enable intellectual and developmental disabilities have
its use in school and adult service systems to opportunities to act in a self-determined manner,
foster the development of self-determination and it leads to them becoming more and more
the creation of environments that are supportive self-determined. Environments that support
of self-determination. greater opportunities for people to act as a causal
agent promote development of
self-determination, and those that restrict such
Causal Agency Theory opportunities impede its development. Research
has shown that congregate work and living set-
As described previously, the functional model tings for people with intellectual and develop-
provided a foundation to operationalize a con- mental disabilities restrict opportunities for
struct that was highly valued by people with making choices and expressing preferences
disabilities and those that support them. compared with non-congregate,
However, given the growth of positive psychol- community-based environments and that people
ogy and emerging applications of person- with intellectual and developmental disabilities
environment fit models of disability and of the who live or work in non-congregate,
supports paradigm in the disability field, a need community-based settings have higher levels of
emerged for an expansion of the functional self-determination (Wehmeyer & Bolding, 1999,
model to address developing knowledge and 2001). This highlights the need for attention to be
highlight applications of self-determination for directed to how environments are structured to
all people, including people with intellectual support the development of self-determination,
and developmental disabilities. Causal Agency and central to this is promoting autonomous
Theory provides that expansion (Shogren, Weh- motivation and addressing psychological needs
meyer, Palmer, Forber-Pratt, et al., 2015). for autonomy, competence and relatedness, as
Within Causal Agency Theory, self- further described in Chap. 19.
determination is defined as a Second, with regard to key terms that are critical
…dispositional characteristic manifested as acting to understanding the Causal Agency Theory defi-
as the causal agent in one’s life. Self-determined nition of self-determination, is the use of the term
people (i.e., causal agents) act in service to freely causal agency. Broadly defined, causal agency
chosen goals. Self-determined actions function to implies that it is the individual who makes or
enable a person to be the causal agent in his or her
life (Shogren et al., 2015, p. 258). causes things to happen in his or her life. Causal
52 K.A. Shogren et al.

agency implies more, however, than just causing Theory (Little, Snyder, & Wehmeyer, 2006) posits
action; it implies that the individual acts with an three types of action-control beliefs: beliefs about
eye toward causing an effect to accomplish a the link between the self and the goal (control
specific end or to cause or create change. Causal expectancy beliefs; “When I want to do ____, I
agents engage in self-determined actions, and can”); beliefs about the link between the self and
self-determined actions are characterized by the means for achieving the goal (capacity beliefs;
essential characteristics—volitional actions, agen- “I have the capabilities to do _____”); and beliefs
tic actions, and action-control beliefs (Shogren, about the utility or usefulness of a given means for
Wehmeyer, Palmer, Forber-Pratt et al., 2015). It is attaining a goal (causality beliefs; “I believe my
these actions that contribute to causal agency and effort will lead to goal achievement” vs. “I believe
the development of self-determination. The essen- other factors—luck, access to teachers or social
tial characteristics of self-determination address capital—will lead to goal achievement”). As
basic psychological needs for autonomy, compe- adaptive action-control beliefs emerge, people are
tence, and relatedness described by better able to act in a psychologically empowered
Self-Determination Theory and enable people to and self-realizing manner.
act as a causal agent in their lives.
Volitional Action. The first such essential
characteristic of self-determined action is voli- Development of Causal Agency
tional action. Volitional actions refer to actions
based upon conscious choice that reflect one’s People develop causal agency as they respond to
preferences. Conscious choices are intentionally opportunities (or impediments) in their environ-
conceived, deliberate acts that occur without ments. Supportive environments enable people to
undue external influence. As such, volitional meet their psychological needs described by
actions are self-initiated and function to enable a Self-Determination Theory (see Chap. 19) and to
person to act autonomously (i.e., engage in learn to develop skills that enable them to engage in
self-governed action). Volitional actions involve self-determined action (volitional action, agentic
the initiation and activation of causal capabilities action, and action-control beliefs). This process is
—the capacity to cause something to happen—in depicted in Fig. 5.1 (Wehmeyer, Shogren, Little, &
one’s life—and involve initiating goals. Lopez, in press). The outcome of enhanced
Agentic Action. The second essential charac- self-determination is that people are able to engage
teristic is agentic action. Agentic actions are self- in more self-determined actions, acting as causal
directed toward a goal. When acting agentically, agents, initiating and engaging in actions directed
self-determined people engage in pathways think- toward goals.
ing. The identification of pathways is a proactive, As such, self-determination develops across
purposive process that identifies ways to create the life span, emerging as adolescents develop
change and reach a specific end. Agentic actions and acquire multiple, interrelated skills, referred
are self-regulated, self-directed, and enable pro- to as component elements of self-determined
gress toward freely chosen goals. Agentic actions action that enable the expression of the essential
involve sustaining actions toward a goal. characteristics and component constructs of
Action-Control Beliefs. The third essential self-determination including learning to make
characteristic of self-determined action involves choices and express preferences, solve problems,
action-control beliefs (Little, Hawley, Henrich, & engage in making decisions, set and attain goals,
Marsland, 2002). These beliefs emerge as people self-manage and self-regulate action,
engage in volitional and agentic actions, develop- self-advocate, and acquire self-awareness and
ing a sense of personal empowerment. People learn self-knowledge. Table 5.1 highlights key skills,
that there is a link between their actions and the called component elements that support the
outcomes they experience and believe they can development of volitional action, agentic action,
make progress toward their goals. Action-Control and action-control beliefs. It is at this level that
5 Self-determination 53

Basic Psychological MoƟvaƟon Causal AcƟon

Needs

AcƟon Control
Autonomy
Beliefs
SELF-
Autonomous DETERMINATION
Competence VoliƟonal AcƟon Causal Agency
MoƟvaƟon

Relatedness AgenƟc AcƟon

Fig. 5.1 Causal agency theory in the development of self-determination

Table 5.1 Component elements of causal agency theory

Essential Component constructs Component elements
characteristics
Volitional action Autonomy Causal capabilities
Self-initiation • Choice-making skills
• Decision-making skills
• Goal-setting skills
• Problem-solving skills
• Planning skills
Agentic action Self-regulation Agentic capabilities
Self-direction • Self-management skills (self-monitoring, self-evaluation,
Pathways thinking etc.)
• Goal attainment skills
• Problem-solving skills
• Self-advocacy skills
Action-control beliefs Psychological • Self-awareness
empowerment • Self-knowledge
Self-realization
Control expectancy
Agency beliefs
Causality beliefs

interventions can be implemented to support the environments (Eisenman, Pell, Poudel, &
development of self-determination and its Pleet-Odle, 2015), and to provide opportunities for
essential characteristics. choice making and for students to engage in action
that support autonomous motivation, as well as
addressing the basic need for autonomy, compe-
Practices to Promote tence, and relatedness. Shogren et al. (2017) pro-
Self-determination and Causal vide more detail on how environments can be
Agency structured to support autonomous motivation. The
focus of the remainder of this chapter will be on
As highlighted throughout this chapter, it is critical autonomy-supportive interventions that can be
to consider how to promote causal agency through used to support the development of
the creation of autonomy-supportive self-determined action, and the component
54 K.A. Shogren et al.

elements listed in Table 5.1: choice making, field, when other directedness characterizes
decision making, goal setting, problem solving, instruction and supports. But, to promote
planning, self-management, goal attainment, self-determination and casual agency, there is a
self-advocacy, self-awareness, and need to focus on enabling the person with a
self-knowledge. disability to direct the process, with the supports
One evidence-based, autonomy-supportive needed to do so.
instructional strategy that has been extensively Using the SDLMI and the SDCDM to support
researched with adolescents with intellectual and people with disabilities consists of a three-phase
developmental disability field is the instructional process. Each phase presents a
Self-Determined Learning Model of Instruction problem to be solved, and the problem relates to
(SDLMI; Wehmeyer, Palmer, et al., 2000) and a some aspect of learning or the job and career
modified version that has been applied with development process. In essence, as the person
adults engaged in career development activities answers the questions in each phase, he or she
called the Self-Determined Career Development must: (a) identify the problem, (b) identify
Model (SDCDM; Wehmeyer, Lattimore, et al., potential solutions to the problem, (c) identify
2003). barriers to solving the problem, and (d) identify
The SDLMI and the SDCDM infuse instruc- the consequences of each solution. The problem
tion and support on the component elements of the person with a disability must address in the
self-determined action (shown in Table 5.1), the first phase is “What is my goal?” The problem
process of self-regulated problem solving, and presented in the second phase is “What is my
research on self-directed learning. The SDLMI plan?” The third phase addresses the problem
and SDCDM focus on promoting self-regulated “What have I learned?” A facilitator can use the
problem solving in service of learning goals and model to support the person with the disability to
job and career goals, respectively. The SDLMI maximally participate in learning the
and SDCDM are appropriate for use with youth problem-solving sequence, answering the ques-
and adults with and without disabilities across a tions presented in each phase, and moving from
wide range of domains and contexts and can be one phase to the next within a goal-oriented
individualized to the unique needs of students context.
with intellectual and development disabilities Each question is also linked to a set of
with a range of support needs. For example, the Facilitator Objectives that provides facilitators
self-directed question that drives the model can with guidance on what they are trying to support
be modified to be cognitively accessible and to each person to achieve in answering the ques-
be delivered through technology and other tions. To meet the Facilitator Objectives, each
means. instructional phase also includes a list of Edu-
The SDLMI and SDCDM are models of cational (for the SDLMI) and Employment (for
instruction that are implemented by a facilitator the SDCDM) Supports that facilitators can use to
to support people with intellectual and develop- enable people with disabilities to self-direct
mental disabilities to learn to self-regulate prob- learning. It may be necessary to use the Educa-
lem solving in service of a goal. These models tion and Employment Supports before the person
provide a framework that teachers and support with a disability can answer each question. By
staff can use to “design instructional materials, providing this instruction, then, the facilitator is
and to guide instruction in the classroom and enhancing the self-determination skills and the
other settings” (Joyce & Weil, 1980, p. 1). causal agency of the person. The SDLMI and
The SDLMI and SDCDM are designed to be SDCDM are designed to be used iteratively,
self-directed in that the person with a disability is moving from one goal to another, and thus, the
directing the learning process, with the supports person with a disability will become increasingly
needed to do so. This differs from how instruc- self-directed and self-determined over time as
tion and supports usually occur in the disability they have multiple opportunities to work through
5 Self-determination 55

the problem-solving process. The SDLMI pro- on adolescents and adults with disabilities, stu-
cess is depicted in Fig. 5.2 and the SDCDM in dents as young as kindergarten have been effec-
Fig. 5.3. These figures highlight the questions tively supported to set goals and self-regulate
that drive the process, the Facilitator Objectives, problem solving with the SDLMI (Palmer &
and the Education and Employment Supports. Wehmeyer, 2003).
Implementation is an individualized process and Researchers have also found that
will be tailored not only to the learning or career multi-component interventions (i.e., those that tar-
development goals, but also the supports needed get multiple component elements, such as the
by each person, and the past learning histories SDLMI and SDCDM) tend to be the most effective
that shape the development of self-determination. (Cobb, Lehmann, Newman-Gonchar, & Alwell,
2009). Specific to the SDLMI and SDCDM,
Wehmeyer et al. (2012) reported the results of a
Research on the Impact group randomized control study of the efficacy of
of Self-determination on Academic the SDLMI. Over 300 students with intellectual
and Transition Outcomes disability or learning disabilities in the treatment
group reported significantly greater increases in
The SDLMI has a large body of evidence sup- self-determination, with the greatest growth in the
porting its implementation in school settings to second year of instruction, suggesting the impor-
enhance the self-determination, goal attainment, tance of ongoing exposure to instruction promoting
and post-school outcomes of youth with dis- self-determination, particularly for students with
abilities, and a growing body of evidence on its intellectual disability. Shogren et al. (2012) con-
implementation in adult settings to support peo- ducted a group randomized control study of the
ple with intellectual and developmental disabili- impact of the SDLMI on access to the general
ties in the career development process. education curriculum and goal attainment and
Researchers have also found, generally, that found that students in the SDLMI group (vs. the
teaching skills leading to enhanced control group) made significantly more progress on
self-determination can improve academic skills education goals and had significantly greater
(Konrad, Fowler, Walker, Test, & Wood, 2007), increases in their access to the general education
attainment of academic (Agran, Blanchard, curriculum than students assigned to the control
Hughes, & Wehmeyer, 2002; Shogren, Palmer, group; further, teachers reported significant chan-
Wehmeyer, Williams-Diehm, & Little, 2012; ges in their perceptions of student’s capacity for
Wehmeyer, Palmer, et al., 2000) and transition self-determination (Shogren, Plotner, Palmer,
(Devlin, 2011; McGlashing-Johnson, Agran, Wehmeyer, & Paek, 2014). Shogren, Wehmeyer,
Sitlington, Cavin, & Wehmeyer, 2003; Shogren Palmer, Rifenbark, and Little (2015) followed
et al., 2012; Wehmeyer, Palmer, et al., 2000; youth with disabilities, including youth with intel-
Woods & Martin, 2004) goals, as well as pro- lectual and developmental disabilities, for two
moting greater access to the general education years after high school who were exposed to
curriculum (Agran, Wehmeyer, Cavin, & Palmer, multi-component interventions to promote
2008; Lee, Wehmeyer, Palmer, Soukup, & Little, self-determination, and found increased employ-
2008) for students with disabilities. Researchers ment and community participation outcomes for
have also found that increased self-determination youth who were more self-determined. Powers
is linked to enhanced recreation and leisure par- et al. (2012) had similar results for youth in foster
ticipation (Dattilo & Rusch, 2012), to increased care and special education, showing that interven-
choice opportunities (Neely-Barnes, Marcenko, tion to promote self-determination resulted in better
& Weber, 2008), and to enhanced quality of life community access outcomes.
(Lachapelle et al., 2005; Wehmeyer & Schalock, With regard to the SDCDM, Wehmeyer et al.
2001). And, while interventions to promote (2003) worked with vocational rehabilitation
self-determination have been primarily focused counselors to implement the SDCDM, found that
56 K.A. Shogren et al.

Phase 1: Set a Goal

Student Problem to Solve: What is my goal? Educational Supports

Student self-assessment of interests,

abilities, and instructional needs.
Awareness Training.
Choice-Making Instruction.
Problem-Solving Instruction.
Decision-Making Instruction.
Goal Setting Instruction

Teacher Objectives

Enable students to identify

specific strengths and
Student Question 1: What do I want to instructional needs.
learn? Enable students to communicate
preferences, interests, beliefs and
values.
Teach students to prioritize
needs.

Teacher Objectives

Enable students to identify their

Student Question 2: What do I know current status in relation to the
about it now? instructional need.
Assist students to gather
information about opportunities
and barriers in their environments.

Teacher Objectives

Enable students to decide if

Student Question 3: What must action will be focused toward
change for me to learn what I don't capacity building, modifying the
know? environment, or both.
Support students to choose a
need to address from the
prioritized list.

Teacher Objectives
Student Question 4: What can I do to
make this happen? Teach students to state a goal
and identify criteria for achieving
goal.

Go to Phase 2

Fig. 5.2 The self-determined learning model of instruction (Wehmeyer, Shogren, et al., 2003)
5 Self-determination 57

Phase 2: Take Action

Educational Supports
Student Problem to Solve: What is my plan?
Self-scheduling.
Self-Instruction.
Antecedent Cue Regulation.
Choice-making instruction.
Goal-Attainment strategies.
Problem-solving instruction.
Decision-making instruction.
Self-Advocacy and assertiveness training.
Communication skills training.
Self-monitoring.

Teacher Objectives
Student Question 5: What can I do to
Enable student to self-evaluate
learn what I don't know?
current status and self-identified
goal status.

Teacher Objectives

Student Question 6: What could keep Enable student to determine plan

me from taking action? of action to bridge gap between
self-evaluated currrent status and
self-identified goal status.

Teacher Objectives

Collaborate with student to

identify most appopriate
instructional strategies.
Student Question 7: What can I do to Teach student needed student-
remove these barriers? directed learning strategies.
Support student to implement
student-directed learning
strategies.
Provide mutually agreed upon
teacher-directed instruction.

Teacher Objectives

Enable student to determine

Student Question 8: When will I take schedule for action plan.
action? Enable student to implement
action plan.
Enable student to self-monitor
progress.
Go to Phase 3

Fig. 5.2 (continued)

58 K.A. Shogren et al.

Phase 3: Adjust Goal or Plan

Student Problem to Solve: What have I

learned? Educational Supports

Self-evaluation strategies.
Choice-making instruction.
Goal-setting instruction.
Problem-solving instruction.
Decision-making instruction.
Self-reinforcement strategies.
Self-recording strategies.
Self-monitoring.

Teacher Objectives
Student Question 9: What actions
Enable student to self-evaluate
have I taken?
progress toward goal
achievement.

Teacher Objectives
Student Question10: What barriers
Collaborate with student to
have been removed?
compare progress with desired
outcomes.

Teacher Objectives

Support student to re-evaluate

goal if progress is insufficient.
Assist student to decide if goal
Student Question 11: What has remains the same or changes.
changed about what I don't know? Collaborate with student to
identify if action plan is adequate
or inadequate given revised or
retained goal.
Assist student to chagne action
plan if necessary.

Teacher Objectives
Student Question 12: Do I know what
Enable student to decide if
I want to know?
progress is adequate, inadequate,
or if goal has been achieved.

Fig. 5.2 (continued)

5 Self-determination 59

Fig. 5.3 The self-determined career development model (Shogren & Wehmeyer, 2016)
60 K.A. Shogren et al.

Fig. 5.3 (continued)

adults with disabilities who were supported to young women found the model useful and
use the model made progress on self-selected effective in setting and working to achieve career
employment goals, and felt that they had gained development and employment goals. Shogren
important skills. Wehmeyer et al. (2009) also et al. (in press) examined implementation of the
used the SDCDM as part of a larger intervention SDCDM with direct support providers as facili-
package with young women with developmental tators, examining the impacts on
disabilities, with results showing that these self-determination of adults with intellectual and
5 Self-determination 61

PHASE 3
Problem to Solve: What have I achieved?
Question 9: What actions have I taken? Employment Supports

Objectives:
• Enable person to self-evaluate and articulate progress Self-Evaluation Instruction
toward goal achievement.
Previous supports applicable
Question 10: What barriers have been removed? as needed

Objectives:
• Assist person to compare progress with their desired
outcomes.

Question 11: What has changed to enable me to get the

job and career I want?

Objectives:
• Support person to re-evaluate goal if progress is
insufficient
• Assist person to decide if goal remains the same or
changes
• Collaborate with person to identify if the action plan
is adequate or inadequate given revised or retained
goal
• Assist person to change action plan if necessary.

Question 12: Have I achieved what I want to achieve?

Objectives:
• Enable person to decide if progress is adequate,
inadequate, or if goal has been achieved.
• If this goal has been achieved, enable person to
decide if a different goal is needed to achieve their
employment or career goals.

Fig. 5.3 (continued)

developmental disabilities served by intellectual autonomy-supportive environments and the

and developmental disability support provider sneed to concurrently address these factors in
organizations in the community. Shogren et al. interventions to impact outcomes. Finally,
found that the SDCDM influenced Shogren et al. (2016) combined the SDCDM
self-determination-related outcomes. However, with the Discovery process and found impacts on
differences in how the provider organizations self-determination when implemented with
implemented the SDCDM and supported staff to adults with intellectual and developmental dis-
facilitate its implementation significantly influ- abilities receiving supports for employment from
enced outcomes, suggesting the importance of community service provider organizations.
62 K.A. Shogren et al.

Overall, these findings suggest the power of inclusive high school. Career Development and
multi-component interventions to promote Transition for Exceptional Individuals, 38(2), 101–
112.
self-determination, like the SDLMI and SDCDM, Field, S. (1996). Self-determination instructional strate-
for providing autonomy-supportive interventions gies for youth with learning disabilities. Journal of
that, when implemented in autonomy-supportive Learning Disabilities, 29, 40–52.
environments, lead to significant changes in Field, S., & Hoffman, A. (1994). Development of a model
for self-determination. Career Development for
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people with intellectual and developmental dis- Field, S., Martin, J. E., Miller, R., Ward, M. J., &
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Essential characteristics of self-determined behavior of

Author Biographies
Karrie A. Shogren, Ph.D. is a Professor of Special Educa- on self-determination, understanding and conceptualizing
tion, Senior Scientist at the Life Span Institute, and Director disability, the application of positive psychology to disability,
of the Kansas University Center on Developmental Disabili- conceptualizing and measuring supports and support needs,
ties at the University of Kansas. Dr. Shogren has published and applied cognitive technologies. He is the co-editor of
extensively in the intellectual and developmental disabilities American Association on Intellectual and Developmental
field, and her research focuses on assessment and intervention Disabilities ejournal, Inclusion.
in self-determination and positive psychology, and the
Kathryn M. Burke, M.Ed. is a doctoral student in Special
application of the supports model across the lifespan. She
Education at the University of Kansas. Her research interests
is co-Editor of Remedial and Special Education and
include self-determination at the elementary and middle
Inclusion.
school levels, and self-determination across the lifespan
Michael L. Wehmeyer, Ph.D. is the Ross and Mariana including employment supports. She was formerly an ele-
Beach Distinguished Professor of Special Education and mentary special education teacher in Philadelphia,
Senior Scientist and Director, Beach Center on Disability, at Pennsylvania.
the University of Kansas. Dr. Wehmeyer’s research focuses
 Mindfulness: An Application
of Positive Psychology in Intellectual 6
and Developmental Disabilities

Nirbhay N. Singh, Giulio E. Lancioni, Yoon-Suk Hwang,

Jeffrey Chan, Karrie A. Shogren and Michael L. Wehmeyer

used in practice and research to describe a state,

Introduction
trait, practice, and an intervention. Furthermore,
the term has generated multiple definitions, giv-
The cultivation of mindfulness is a centuries-old
ing rise to questions as to exactly what is being
practice that is commonly found in many of the
measured across studies that use different mea-
world’s wisdom traditions (Singh, 2014a).
sures of mindfulness (Gethin, 2011; Grossman &
Mindfulness entered the Western lexicon when
Van Dam, 2011). Regardless of these growing
Davids (1881) translated the Pali term sati as
pains in the development and measurement of
mindfulness in the context of meditation (dhyāna
mindfulness as an accepted meditation practice,
in Sanskrit). Although instructions in mindful-
there is a general consensus on the core aspects
ness meditation in the West were available for
of mindfulness-based interventions (see
several decades (e.g., Thera, 1962; Hahn, 1976;
Kabat-Zinn, 1990).
Suzuki, 1970), it caught the imagination of the
Some researchers have equated the use of
general public with Kabat-Zinn’s (1990) pro-
MBSR with the management or reduction of
gram, Mindfulness-Based Stress Reduction
psychological stress or distress. Thus, they
(MBSR), for treating stress arising from pain and
equate MBSR and other mindfulness-based
suffering. Over time, mindfulness has become
interventions with traditional psychological
somewhat of an elusive term, because it has been
treatments that focus on disease, disorder, dys-
function, and disabilities. The assumption is that
reduction of negative emotional states or
N.N. Singh (&)
pathology will enhance both mental and physical
Medical College of Georgia, Augusta University,
Augusta, GA, USA well-being. In this sense, mindfulness-based
e-mail: [email protected] interventions could be seen as being antithetical
G.E. Lancioni to the principles of positive psychology, which is
Department of Neuroscience and Sense Organs, focused on personal growth—the strengthening
University of Bari, Corso Italia 23, 70121 Bari, Italy of positive mental states and well-being. This
Y.-S. Hwang view is based on a superficial understanding of
Learning Sciences Institute Australia, Brisbane MBSR as an intervention primarily focused on
Campus Level 4, 229 Elizabeth Street, Brisbane
reducing stress and suffering, as implied by the
CBD, QLD 4000, Australia
title of the MBSR program. People who under-
J. Chan
take MBSR and related mindfulness-based
MINDS, 800 Margaret Drive, Singapore 149310,
Singapore courses experience personal transformation that
enables them to self-regulate their emotional
K.A. Shogren
M.L. Wehmeyer
University of Kansas, 1200 Sunnyside Ave, responses to the vicissitudes of life itself, with
Lawrence, KS 66045, USA increasing equanimity. Immersion and deepening

© Springer International Publishing AG 2017 65

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_6
66 N.N. Singh et al.

of mindfulness through disciplined meditation of all mindfulness-based programs. It includes

practice enables people to be nonjudgmentally the following: eight weekly classes; an all-day
aware of their own patterns of maladaptive silent retreat; four formal mindfulness meditation
behavior and to consciously cultivate beneficial practices—body scan meditation, gentle Hatha
mental states. The focus of mindfulness medita- yoga, sitting meditation, and walking meditation;
tion is on personal, transcendent growth, which informal mindfulness practices; and homework
produces positive, ineffable changes that build on assignments. The MBSR program has been used
their inherent strengths. In this sense, interven- both in its original format and, more recently, in
tions based on mindfulness and positive psy- various adaptations depending on the needs or
chology are synergistic experiential approaches abilities of the participants.
that can be subjected to experimental Miodrag et al. (2013) evaluated the feasibility
verification. and effectiveness of an adapted MBSR program
This chapter provides an overview of with 24 adults with Williams syndrome, a neu-
mindfulness-based approaches used in the general rodevelopmental disorder. People with this syn-
field of intellectual and developmental disabili- drome invariably have mild-to-moderate
ties. It provides a comprehensive but not impairments in intellectual functioning (Howlin
exhaustive narrative review of the published et al., 2010) and high rates of internalizing and
research on mindfulness-based interventions that externalizing problems (Morris, 2010). Follow-
have been used by people with intellectual and ing a five-day mindfulness training, the adults
developmental disabilities and their support pro- showed reductions in physiological (i.e., salivary
viders—family members, direct support staff, and cortisol and alpha-amylase), psychological
teachers—and the effects of these interventions. (self-reported anxiety), and behavioral outcomes
(parent/caregiver reports of somatic complaints
and attention problems). Reductions in the cor-
Individuals with Intellectual tisol and alpha-amylase levels were recorded
and Developmental Disabilities following daily mindfulness sessions, suggesting
increasing self-control of stress-related symp-
A number of mindfulness-based interventions toms as training progressed.
have been taught to individuals with intellectual Mindfulness-Based Cognitive Therapy
and developmental disabilities, typically to those (MBCT). MBCT, which is based on the MBSR
individuals who have higher levels of intellectual program, combines meditation practices with
functioning. These interventions include aspects of cognitive therapy to develop mind-
mindfulness-based therapies, customized fulness (Segal et al., 2002). As with MBSR, it is
mindfulness-based programs, meditation on the typically used in its original format or adapted to
soles of the feet, acceptance and commitment the needs of specific populations. For example,
therapy, and dialectical behavior therapy. Bögels et al. (2008) used an adapted version of
the MBCT program with adolescents (some of
whom had autism spectrum disorder) and their
Mindfulness-Based Programs parents. Following eight weeks of MBCT train-
ing, the adolescents reported substantial
Several studies have demonstrated that adoles- improvements on personal goals, happiness,
cents and adults with disabilities can master mindful awareness, internalizing and externaliz-
mindfulness skills to enhance their daily lives as ing complaints, and attention problems. This
well as manage a variety of disorders and study suggested that these adolescents learned
problems. skills that helped them in multiple ways to nav-
Mindfulness-Based Stress Reduction igate daily life in a positive manner.
(MBSR). MBSR, which was very skillfully Spek et al. (2013) used a modified MBCT
developed by Kabat-Zinn (1990), is the mother protocol—termed Mindfulness-Based Therapy
6 Mindfulness: An Application of Positive Psychology … 67

for Autism Spectrum Disorder (MBT-AS)—in a mindfulness program that was introduced and
randomized controlled trial with 44 adults with assessed for effectiveness in a medium-secure
autism spectrum disorder. The MBT-AS was psychiatric ward for female offenders. The pro-
presented in nine weekly training sessions that gram was effective in reducing three proxy
included a mindful eating exercise, body scan, measures of aggression—number of observa-
mindful breathing meditation, mindful walking, tions, physical interventions, and seclusions. The
yoga, sitting meditation, listening meditation, program had multiple components, only some of
psychoeducation on ruminative thoughts, medi- which were based on mindfulness, and it cannot
tation on observing thoughts, and home practice be concluded that mindfulness was responsible
following each week’s training. When compared for reductions in aggression. However, the data
to the control group, the participants reported were suggestive of female offenders being able to
significant reductions in depression, anxiety, and self-regulate their emotions with a treatment
rumination. In a follow-up study using the package that included training in mindfulness.
MBT-AS with 50 adults with autism spectrum
disorder, Kiep et al. (2015) reported significant
reductions in anxiety, depression, agoraphobia, Meditation on the Soles of the Feet
somatization, inadequacy in thinking and acting,
distrust and interpersonal sensitivity, and sleeping In the first application of a mindfulness-based
problems. Of importance was that the clinically procedure in the field of intellectual and devel-
significant changes were maintained for nine opmental disabilities, Singh et al. (2003) taught a
weeks following the termination of mindfulness 27-year-old man to use a newly developed
training. These two studies suggested that adults mindfulness-based procedure, meditation on
with autism spectrum disorder can learn how to the Soles of the Feet (SoF), as a simple
self-manage their psychological well-being in self-management strategy for anger management.
daily life through mindfulness meditation. The man, who had a comorbid psychotic disor-
Idusohan-Moizer et al. (2015) developed a der, had been institutionalized at the age of
mindfulness-based program, based on MBCT, 7 years due to uncontrolled aggression, placed in
for adults in the community with moderate-to- foster care at 15, admitted for inpatient psychi-
borderline impairments in intellectual function- atric care at 16, and discharged to a community
ing and either recurrent depression or anxiety, or group home at 17. For 10 years thereafter, he
both clinical conditions. The intervention inclu- was admitted and discharged from psychiatric
ded mindfulness of the breath, basic yoga exer- hospitals for his aggressive behavior. Following
cises, the raisin exercise for mindful eating, a his self-referral for treatment, he was taught the
diary of pleasant and unpleasant events from SoF procedure, which he mastered to control his
MBCT, metaphors and analogies from accep- anger and aggression, and thereafter managed his
tance and commitment therapy (ACT), exercises community placement without engaging in
on developing self-compassion, and the medita- aggressive behaviors. Indeed, he was not only
tion on the soles of the feet (SoF) procedure able to manage his own aggressive behaviors but
(Singh & Jackman, 2017a). They ran the pro- also teach his peers to use the same procedure to
gram for nine weeks, with a follow-up at six successfully manage their aggressive behaviors
weeks post intervention. The participants expe- (Singh et al., 2011a).
rienced improvements in depression, anxiety, The SoF procedure was originally developed
self-compassion, and compassion. These as a mindfulness-based procedure for self-
improvements were maintained at the six-week managing the precursors of emotionally arous-
follow-up, suggesting emergent transformative ing behaviors that may give rise to anger and
changes in the participants. aggression (Singh & Jackman, 2017b). It pro-
Customized Mindfulness-Based Programs. vides a skillful means of abating rising anger by
Chilvers et al. (2011) developed a customized shifting one’s attention and awareness from the
68 N.N. Singh et al.

emotionally charged situation, and any subse- Community placements. Occasionally, peo-
quent perceptions of the situation, to a neutral ple with intellectual disability who live in the
point on the body, the soles of the feet. It enables community are threatened with more restrictive
the person to downregulate the surging emotion and segregated placements due to their aggres-
due to either an internal or external situational sive behaviors toward peers and support staff. In
change. The meditation enables the person to such cases, it invariably leads to more restrictive
volitionally exercise inhibitory control and, with lifestyles and their quality of life is compro-
practice, this control becomes almost automatic. mised, but this need not be the case if appropriate
While SoF has been used most extensively for interventions can be developed for them. For
managing anger and aggression, therapists have example, Singh et al. (2007a) taught the SoF
found it to be generally useful as an effective way procedure to three adults who had moderate
of regulating one’s mental state when faced with impairments in intellectual functioning and were
other emotionally arousing situations, such as at risk of being placed in more restrictive settings
anxiety and worry. because of high-intensity, uncontrolled aggres-
Extant research using single-subject research sive behaviors. Given their level of functioning,
designs and a randomized controlled trial has they found it somewhat difficult to understand
shown that people with intellectual disability can the visualization instructions, but were able to
effectively use the SoF procedure to self-manage master the procedure when the instructions were
their aggressive behaviors (Singh et al., 2013a). concretized with recent episodes of aggressive
In addition, children and adolescents with autism behaviors they exhibited, and additional prompts
spectrum disorder have also been successful in were provided. They were successful in manag-
using the SoF procedure to manage aggressive ing their anger and aggression, and in maintain-
behavior. For example, Singh et al. (2011b) ing long-term community placements without
taught three adolescents with autism to manage further professional intervention. This study
their physical aggression with the SoF procedure. suggested that people functioning at lower cog-
They were able to reduce their aggressive nitive levels may be able to master the SoF
behavior from a mean range of 14–20 per week procedure if individual-specific instructional
during baseline to zero during the last 4 weeks of accommodations are made for them.
intervention. In addition, they were able to Forensic settings. Individuals in forensic
maintain control of their aggressive behavior at settings often engage in aggressive and violent
about one physical aggression per year during the behavior, and it is no different for those who
three-year follow-up. In a related study, Singh have intellectual and developmental disabilities.
et al. (2011c) taught three adolescents with Singh et al. (2008a) taught the SoF procedure to
Asperger syndrome to manage their low-rate six offenders with mild intellectual and devel-
physical aggression with the SoF procedure. opmental disabilities for self-management of
They were able to reduce their physical aggres- their anger and aggression. They were able to
sion from a mean baseline rate of about three successfully decrease their physical and verbal
per week to almost zero during intervention, aggression, thereby preempting the need for the
with no instances during a four-year follow-up. medication and physical restraints they were
These studies suggest that the SoF procedure typically subjected to following an aggressive
provides individuals with a simple but effective incident. In addition, this study showed that the
way of responding positively under adverse additional cost of their care due to their aggres-
conditions. sive behavior was reduced by 95.7% when the
People with intellectual and developmental individuals were able to self-manage their phys-
disabilities have used the SoF procedure, alone ical aggression. In another study, Singh et al.
and in combination with other procedures, in a (2011d) taught mindfulness skills to three adult
variety of contexts and for different behaviors. sexual offenders with intellectual disability to
We provide a brief overview of such use. control their sexual arousal. The men were
6 Mindfulness: An Application of Positive Psychology … 69

minimally successful at controlling their sexual use mindfulness-based procedures to manage

arousal when viewing printed stimulus materials their health and wellness issues. For example,
that they usually found sexually arousing. The individuals with Prader–Willi syndrome have an
men achieved some success with the SoF pro- insatiable appetite that often leads to overweight
cedure, but were most successful in controlling and obesity, a health issue that has not been
their sexual arousal with a Mindful Observation amenable to traditional medical or behavioral
of Thoughts meditation procedure. This proce- treatments. Two proof-of-concept studies indi-
dure required them to (1) focus on their breath, cate that customized mindfulness-based proce-
(2) observe the beginning, middle, and end of dures may assist such people to manage their
their thoughts, (3) observe their thoughts as eating disorder through a mindfulness-based
clouds passing through their awareness, and lifestyle change program. In the first study,
(4) observe the precursors to their sexual arousal Singh et al. (2008b) used an incremental proce-
as thought clouds without (a) pushing the dure to evaluate the effects of a multicomponent
thoughts away, (b) engaging with the thoughts, health and wellness intervention on weight
or (c) becoming emotionally attached to the management by an adolescent with Prader–Willi
thoughts. This study suggested that individuals syndrome and mild impairments in intellectual
with intellectual disability can, with appropriate functioning. The components were regular exer-
mindfulness training, exert inhibitory control cise; regular exercise plus healthy eating; and
over strong emotionally arousing situations in regular exercise, healthy eating, and
their life. mindfulness-based procedures that included
Smoking. Smoking is a recognized risk factor (a) mindful eating, (b) visualizing and labeling
for various health conditions, as well as for death hunger, and (c) rapidly shifting attention away
and dying. In the first of three studies, Singh from hunger by engaging in SoF. In the second
et al. (2011e) developed and implemented a study, Singh et al. (2011f) used an enhanced
three-component mindfulness-based smoking multicomponent health and wellness procedure
cessation procedure with a 31-year-old man with that consisted of: (a) physical exercise, (b) food
mild intellectual disability who had been smok- awareness, (c) mindful eating to manage rapid
ing for 17 years. The procedures included (a) in- eating, (d) visualizing and labeling hunger, and
tention, (b) mindful observation of thoughts, and (e) the SoF procedure as a self-management
(c) SoF. The man was able to demonstrate con- strategy against temptation to eat between meals.
trol over successive reductions in the number of Three adolescents with Prader–Willi syndrome
cigarettes smoked through a changing-criterion and mild intellectual disability were able to
design until he quit smoking in less than three reduce their weights to within the accepted body
months. He demonstrated control over abstinence mass index range despite their biologically dri-
during a 12-month follow-up. In a second study, ven insatiable appetite. In both studies, the ado-
three men who smoked up to 40 cigarettes a day lescents were able to maintain their body weights
were able to achieve abstinence in just over two during a three-year follow-up period suggesting
to five months and maintain abstinence during long-term gains in self-control and enhanced
the three-year follow-up period (Singh et al., healthy lifestyles.
2013b). The efficacy of the meditation proce- Telehealth. The rapid growth of information
dures for smoking cessation in this population and communications technology over the last
was demonstrated in a third study, a randomized few decades has given rise to its use in medicine
controlled trial (Singh et al., 2014b). These and health care, generally known as tele-
studies indicated that people with intellectual medicine, telehealth, or eHealth, and the more
disability can be mindful of their health and recent rise of mobile technology has led to
volitionally overcome their smoking addiction. mobile health or mHealth (Davis et al., 2016).
Health and Wellness. Research suggests that Telehealth is particularly helpful in providing
people with neurodevelopmental disorders can services to underserved populations like those in
70 N.N. Singh et al.

rural areas that do not have access to clinical self-harm behaviors, such as suicidal thoughts,
professionals. Recently, telehealth has been urges, and attempts. These behaviors are symp-
adopted as an effective technology for delivering tomatic of individuals diagnosed as having bor-
behavioral health assessments and interventions derline personality disorder (BPD) and have
(Wacker et al., 2016). For example, Singh et al. comorbid problems, such as depression, anxiety,
(2017) reported the use of telehealth technology eating disorders, and substance use. DBT is an
to teach three teachers in a rural school district evidence-based therapy that is being used not
the basics of the SoF procedure. The teachers only with individuals with BPD, but also with
then taught three students with intellectual dis- individuals who have a number of other issues
ability to successfully use the SoF procedure to (e.g., binge-eating) in adolescents and adults
manage their physical and verbal aggression. It is (Linehan, 2014). Following an early description
likely that the SoF procedure could be used more of a modified DBT program for individual with
widely with telehealth technology. intellectual disability (Lew et al., 2006), there
have been a few accounts of its use in commu-
nity settings as well as a few studies with small
Acceptance and Commitment Therapy samples (e.g., Baillie & Slater, 2014; Morrissey
& Ingamells, 2011; Sakdalan et al., 2010;
Acceptance and Commitment Therapy (ACT), a Verhoeven, 2010). There are some suggestions in
modified form of cognitive behavior therapy, is the extant literature that DBT may enable people
based on relational frame theory and includes a with intellectual disability to enhance their ability
variety of techniques depending on the context of to function in a socially acceptable manner in
therapy or training. Its six core principles include community and secure forensic settings despite
cognitive diffusion, acceptance, contact with the their personality or forensic issues.
present moment, observing the self, values, and In sum, individuals with intellectual and
committed action. ACT is an evidence-based developmental disability can master a variety of
therapy for a large number of psychological and mindfulness-based techniques—both as a part of
psychiatric conditions (Hayes et al., 2016). a course of instructions in multiple mindfulness
Modified versions of ACT activities have been meditations (e.g., MBSR, MBCT), mindfulness
used with people with intellectual disability. For techniques in the context of cognitive behavior
example, Brown and Hooper (2009) used mind- therapies (e.g., ACT, DBT), and an individual
fulness and ACT-based experiential activities to mindfulness-based meditation (i.e., SoF) alone
successfully treat anxious and obsessive thoughts and combined with other procedures and medi-
in an adolescent with moderate-to-severe tations. Extant research suggests that people with
impairments in intellectual functioning. Pahnke intellectual and developmental disability can
et al. (2014) evaluated the feasibility and out- benefit from individual as well as group
comes of a six-week ACT-based skills training instruction in mindfulness procedures. The out-
group with high-functioning students with autism comes of these mindfulness instructions are sta-
spectrum disorder. Initial results showed that tistically and clinically significant, positive, and
the ACT-based intervention resulted in enduring.
decreased stress, hyperactivity and emotional
distress, and increased prosocial behavior.
Parents of People with Intellectual
and Developmental Disabilities
Dialectical Behavior Therapy
There is emerging research suggestive of the role
Dialectical behavior therapy (DBT), another mindfulness may play in the lives of parents
modified form of cognitive behavior therapy, is of people with intellectual and developmental
especially relevant for people who engage in disabilities. For example, MacDonald and
6 Mindfulness: An Application of Positive Psychology … 71

Hastings (2010) reported a direct relationship MBSR and positive adult development (PAD: a
between fathers’ level of mindfulness and positive psychology practice) programs on
involvement in child-related parenting tasks— mothers of children with autism and other dis-
more mindful fathers are more involved with abilities. Both programs were effective, but
their children’s socialization. Beer et al. (2013) mothers trained in MBSR showed greater
found higher levels of mindful parenting were improvements in anxiety, depression, sleep, and
correlated with lower levels of depression and well-being. Bazzano et al. (2015) used a
stress. Furthermore, lower levels of mindful community-based participatory approach to
parenting were correlated with higher levels of offering training in MBSR to parents and primary
child behavior problems. In a study with mothers caregivers of people with developmental dis-
of children with autism, Conner and White abilities. At termination and two months fol-
(2014) found that mindfulness is associated with lowing termination of the MBSR training,
levels of maternal stress above and beyond child parents and caregivers reported significantly
behavior problems. Jones et al. (2014) reported lower levels of perceived stress and increased
mediation effects of mindful parenting on mindfulness, self-compassion, and well-being. In
maternal anxiety, depression, and stress. These another community-based sample, Roberts and
theoretical findings suggest that enhancing Neece (2015) used the standard MBSR program
mindful parenting may be of benefit not only for with parents of children with intellectual and
parents, but also for their children with intellec- developmental disabilities and reported
tual and developmental disabilities. improvements in the parents’ mental health and
positive changes in their children’s behavior.
Mindfulness-Based Cognitive Therapy.
Mindfulness-Based Programs Ferraioli and Harris (2013) compared the effects
of mindfulness (based on MBCT and the mind-
A number of mindfulness-based practices have fulness module of DBT) and skills-based parent
been taught to parents of individuals with intel- training programs for parents of children with
lectual and developmental disabilities. These autism. Assessments for parental stress and
include MBSR, MBCT, and customized global health outcomes were undertaken at
mindfulness-based therapies. pre-treatment, post-treatment, and three-month
Mindfulness-Based Stress Reduction. When follow-up. Statistically significant improvements
compared to a waiting-list control condition, were evident on both outcome measures only for
Neece (2014) found that parents who completed parents who received the mindfulness training.
a standard MBSR program reported significant Lunsky et al. (2015) evaluated the effects of a
reductions in stress and depression, and mindfulness-based coping with stress group
enhanced life satisfaction. In addition, parent (based on MBCT and MBSR) for parents of
training in MBSR was correlated with reduced adolescents and adults with IDD. While no sig-
attention problems and symptoms of attention- nificant changes were found in the parents’
deficit hyperactivity disorder in their children. mindfulness or mindful parenting scores, parents
Using a sub-sample from the Neece study, who completed the training showed significant
Lewallen and Neece (2015) reported that chil- reductions in stress, the primary outcome tar-
dren of parents who participated in the MBSR geted in this study.
program showed improvements in self-control, Customized Mindfulness-Based Programs.
empathy, and engagement. Furthermore, teachers In one of the earliest mindfulness-based parent-
reported that these children showed improve- ing studies with parents of children with autism,
ments in communication, responsibility, and Singh et al. (2006a) developed a customized
cooperation. 12-week multicomponent mindfulness-based
In a large randomized controlled trial, Dykens parenting program. They taught the mindfulness
et al. (2014) compared the relative effects of program to three parents of children with autism
72 N.N. Singh et al.

and evaluated the effects of the program on with intellectual and developmental disabilities
outcomes for the children. They reported that and their parents that was run in parallel. The aim
enhanced mindful parenting skills of the parents was to assist the teens to reduce their difficulties
decreased the aggression, noncompliance, and with emotional regulation and to increase social
self-injury in their children and increased the behaviors. The parent training was for the parents
parents’ satisfaction with their parenting skills to learn mindfulness skills so that they could
and social interactions with their children. Singh guide and support their teens in their mindfulness
et al. (2007b) replicated these procedures with practices. The teens were able to master the
four parents of children with intellectual and mindfulness practices and, following training,
developmental disabilities and reported similar they appeared to be more happy, relaxed, and
findings. In an extension of these efforts, less worried, while the parents exhibited
Singh et al. (2014c) developed an eight-week increased mindfulness.
mindfulness-based program combined with In sum, there is an emerging evidence base of
streamlined positive behavior support that aimed standard and customized mindfulness-based
to teach participants a broad-based mindfulness interventions that show much promise in
practice and skills to develop and mindfully enhancing the ability of parents of individuals
implement positive behavior support for individ- with intellectual and developmental disabilities
uals with challenging behaviors. Results of this to mindfully support their children. These inter-
study with mothers of adolescents with autism ventions assist parents in reducing their own
spectrum disorder showed that there was a sig- perceived psychological stress and in increasing
nificant decrease in the mothers’ stress as well as their psychological well-being. In addition, chil-
improvements in the adolescents’ behavior. These dren and adolescents with intellectual and
improvements were maintained for over 30 weeks developmental disabilities show enhanced emo-
during the follow-up period. These studies suggest tion regulation and psychological well-being
that customized mindfulness-based programs can when they receive parallel training in mindful-
be developed and successfully meet the needs of ness activities or when their parents receive the
families with members who have intellectual and training alone. These studies support the notion
developmental disabilities. that mindfulness for parents has a bidirectional
In a novel study, Hwang et al. (2015) devel- effect with their children, although intuitively
oped a customized eight-week mindfulness pro- one could suggest that the effects would be
gram for mothers of children with autism strongest when both parents and their children
spectrum disorders and problem behaviors. They receive mindfulness training either together or
initially taught the program to the mothers and separately.
when they were successful in their mindfulness
practice, the mothers taught mindfulness activi-
ties to their children. Although the outcomes of Support Providers of Individuals
the training varied among the mothers and their with Intellectual and Developmental
children, in general, the mothers reported Disabilities
increased levels of mindfulness for themselves
and reduced problem behaviors for the children As with parent caregivers, paid support providers
following the termination of training, and reduc- are often stressed due to the nature of caregiving
tion of parenting stress. Following instructions in in the field of developmental disabilities
mindfulness activities by their mothers, the chil- (Hastings et al. 2006; Hensel et al. 2012).
dren exhibited less anxiety and thought problems. Support providers may be unable to cope with the
Additional details on the study and outcomes can emotional and physiological reactions to job-related
be found in Hwang and Kearney (2016). demands, often leading to burnout, which results
Heifetz and Dyson (2016) developed and from depleted physical and emotional strength
evaluated a mindfulness-based group for teens due to prolonged stress (Crawford et al. 2010).
6 Mindfulness: An Application of Positive Psychology … 73

Eventually, caregiver burnout leads to dimin- the support providers completed mindfulness
ished quality and safety in care and may com- training.
promise the quality of lives of people with Mindfulness-Based Positive Behavior Sup-
developmental disabilities (Salyers et al. 2016). port. In an early version of the mindfulness-
Issues of stress and burnout are rooted in per- based positive behavior support (MBPBS) pro-
sonal emotional regulation in the face of internal gram, Singh et al. (2009) provided a 12-week
and/or external pressure to perform one’s job mindfulness training course to group home staff.
under adverse conditions. Thus, mindfulness- As training progressed and following completion
based interventions may be helpful for paid of the training, staff reduced and then eliminated
support providers because it teaches them how to the use of physical restraints contingent on the
regulate their emotion under demanding cir- aggressive behavior of persons they were sup-
cumstances (Vago and Silbersweig 2012). In porting. In addition, the use of emergency med-
line with this thinking, a small number of ication decreased substantially, and staff and peer
mindfulness-based practices have been taught to injuries resulting from the individuals’ aggres-
paid support providers of individuals with intel- sive behavior decreased to near-zero levels. In
lectual and developmental disabilities. the first formal use of MBPBS with paid care-
givers, Singh et al. (2015) provided a seven-day
mindfulness training to group home staff. When
Mindfulness-Based Programs compared to baseline measures, the staff showed
clinically and statistically significant reductions
Customized Mindfulness-Based Programs. In following mindfulness training in the use of
the earliest use of a customized verbal redirection in response to aggressive
mindfulness-based intervention with support behaviors of the adults with intellectual and
providers, Singh et al. (2004) provided mind- developmental disabilities and terminated the use
fulness training to three support providers who of physical restraints. They reduced their own
were yoked to three control support providers. perceived stress, which eliminated staff turnover.
They assessed the effects of caregiver mindful- In addition, once the individuals’ aggressive
ness training on the level of happiness of three behaviors were under control, all staff and peer
adults with intellectual and developmental dis- injuries stopped. Furthermore, benefit–cost anal-
abilities who were at the profound level of ysis showed a substantial financial savings for
intellectual functioning. Regardless of their the group homes due to staff training in MBPBS.
baseline rate, all three individuals increased their These findings were essentially replicated by
levels of happiness when supported by staff Singh et al. (2016a) with caregivers in commu-
trained in mindfulness, but remained at baseline nity group homes for people with intellectual
levels with the control staff. Singh et al. (2006b) disability with mild intellectual impairments, and
provided a five-day intensive mindfulness train- by Singh et al. (2016b) in a randomized con-
ing to support providers in group homes for trolled trial with support providers in a congre-
individuals with intellectual and developmental gate care facility for individuals with intellectual
disabilities following behavioral training. When disability who were at severe or profound levels
compared to baseline rate, caregiver behavioral of intellectual functioning.
training resulted in a small reduction in aggres-
sive behavior by the individuals, but their
aggressive behaviors were significantly reduced Occupational Mindfulness
only following caregiver mindfulness training.
Similarly, there was some increase in the number Brooker et al. (2013) developed the Occupational
of learning objectives mastered by the individu- Mindfulness (OM) program, based on MBSR
als following caregiver behavioral training, and MBCT, for support providers in Australia.
but substantial increases occurred only when Training was provided to 34 participants
74 N.N. Singh et al.

(22 managers and 12 disability support workers) attending the workshop showed significant
at baseline and following completion of the improvements in psychological distress, which
training. Results showed the participants posi- was maintained at six-week follow-up.
tively evaluated the program and reported signif- In sum, the emerging research on providing
icant increases in positive affect and the mindfulness training to paid support providers of
mindfulness facet of observing. However, they people with intellectual and developmental dis-
also reported increases in negative affect, per- abilities suggests that it reduces their stress and
ceived stress, anxiety, and negative emotional burnout, and changes the nature of their bidi-
symptoms. In a follow-up study, Brooker et al. rectional interaction with those they support.
(2014) assessed the effects of the OM program on That is, their transactional interactions change
the use of restrictive interventions by disability from using restrictive procedures, such as
support workers. They reported reduced use of “as restraints and emergency medicines, to more
required” medications (PRN, pro re nata), seclu- positive approaches that produce happiness in the
sions, and chemical restraints. These findings lives of the individuals. Furthermore, people with
replicated the earlier findings of Singh et al. intellectual and developmental disabilities appear
(2009), which reported that mindfulness-based to master more learning objectives following the
training of staff reduced restrictive interventions. support providers being trained in mindfulness.
The benefits of mindfulness training for support
providers extend to financial benefits for agen-
Acceptance and Commitment Therapy cies as well because it reduces the extra costs
involved in hiring additional staff to serve indi-
In two related studies, Noone and Hastings viduals with severe aggressive behavior, training
(2009, 2010) evaluated the impact of Promotion for new staff, and compensation for staff injuries.
of Acceptance in Carers and Teachers (PACT),
an intervention based on ACT, on support staff
stress, work-related stressors, and psychological Teachers of Individuals
well-being. Following training, staff reported less with Intellectual and Developmental
psychological distress without a reduction in the Disabilities
perceived level of work stress. These studies
suggested that support providers may benefit Teachers of children and adolescents with intel-
from ACT and mindfulness-based interventions. lectual and developmental disabilities can expe-
Bethay et al. (2013) developed two training rience emotional dysregulation if they are not
modules—one focused on ACT and applied provided adequate support to provide individu-
behavior analysis (ABA) and the other on ABA alized instruction within group settings that is
alone—for staff from a state-funded residential responsive to the changing needs of each student,
facility for people with intellectual and devel- maintain structure and order in the classroom
opmental disabilities. The participants received while providing individualized instruction to
training in either the ACT + ABA or ABA alone. students with special needs, and adhere to the
When compared to staff who received ABA specific requirements of each student’s individ-
alone, those who received the ACT + ABA ualized education plans. Often these teachers feel
training showed greater reductions in psycho- ill-prepared to teach children and adolescents
logical distress as well as a concurrent decrease with special needs and face stress and burnout.
in the believability of burnout-related thoughts. Recently, there has been a surge of mindful-
McConachie et al. (2014) evaluated the effec- ness training and research in schools, but much
tiveness of an acceptance and mindfulness-based of this has involved general education
stress management workshop with staff working (Schonert-Reichl & Roeser, 2016), and very little
with people with intellectual and developmental meaningful work has been done with teachers
disabilities and challenging behaviors. Staff in special education (Smith & Jelen, 2016).
6 Mindfulness: An Application of Positive Psychology … 75

In a mixed-population study of parents and likely because of the transformative effects of

educators of children with special needs, Benn mindfulness practices, and, in this respect,
et al. (2012) assessed the effects of the mindfulness enables the participants to reach for
MBSR-based SMART-in-Education (Stress optimal human functioning—the bedrock of
Management and Relaxation Techniques) pro- positive psychology (Peterson, 2006). Although
gram (Cullen & Wallace, 2010) that was pre- programs like MBSR and MBCT were designed
sented twice a week over a five-week period. to ameliorate specific mental conditions, the
Overall, the parents and teachers experienced focus of the trainings has not been on eliminating
significant reductions in stress and anxiety, as these conditions but rather on how to respond to
well as increased mindfulness, self-compassion, these conditions through acceptance, nonjudg-
and personal growth at the completion of the mental awareness, and understanding of the
program and at a two-month follow-up. Singh transience of all things. Thus, like positive psy-
et al. (2013c) assessed the impact of an early chology, mindfulness enables the participants to
version of the MBPBS mindfulness training cultivate human strengths, virtues, and adaptive
program for teachers on the behavior of their responses to situations, regardless of whether
preschool children with disabilities. Results they are societally characterized as positive or
showed that the children’s challenging behaviors negative. While the methods used to achieve
and negative social interactions began decreas- these ends are different in mindfulness and pos-
ing, and their compliance with teacher requests itive psychology, the journey is probably the
began increasing during mindfulness training for same.
the teachers and continued following training.
This study suggested that, in the absence of any
direct intervention with the children, simply References
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Behavior Modification, 31, 800–814. of a mindfulness-based smoking cessation program for
Singh, N. N., Lancioni, G. E., Winton, A. S. W., Curtis, an adult with mild intellectual disability. Research in
W. J., Wahler, R. G., Sabaawi, M., et al. (2006a). Developmental Disabilities, 32, 1180–1185.
Mindful staff increase learning and reduce aggression Singh, N. N., Lancioni, G. E., Winton, A. S. W., Wahler,
in adults with developmental disabilities. Research in R. G., Singh, J., & Sage, M. (2004). Mindful
Developmental Disabilities, 27, 545–558. caregiving increases happiness among individuals
Singh, N. N., Lancioni, G. E., Winton, A. S. W., Fisher, with profound multiple disabilities. Research in
B. C., Wahler, R. G., McAleavey, K., et al. (2006b). Developmental Disabilities, 25, 207–218.
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non-compliance, and self-injury in children with E. (2003). Soles of the feet: A mindfulness-based
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(MBPBS) for mothers of adolescents with Autism A. Schonert-Reichl & R. W. Roeser (Eds.), Handbook
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teachers changes the behavior of their preschool Mindfulness-based therapy in adults with an autism
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A mindfulness-based smoking cessation program for Thera, N. (1962). The heart of Buddhist meditation.
individuals with mild intellectual disability. Mindful- London, UK: Rider.
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D. Brown (Eds.), Assessment and treatment of sexual evidence-based practices in intellectual and develop-
offenders with intellectual disabilities: A handbook mental disabilities (pp. 585–613). New York, NY:
(pp. 317–340). Chichester, UK: Wiley-Blackwell. Springer.
Wacker, D. P., Schieltz, K. M., Suess, A. N., Romani,
P. W., Padilla Dalmau, Y. C., Kopelman, T. G., et al.
Jeffrey Chan, Ph.D. is Deputy CEO, MINDS Singapore
which is the largest intellectual disability service provider in
Singapore. He is also the Director of the newly established
MINDS Institute of Intellectual and Developmental Disabil-
ities. He has held two inaugural statutory roles in Victoria and
Author Biographies Queensland, Australia to protect the rights of people with
disabilities who were subject to restraints and seclusion, and
Nirbhay N. Singh, Ph.D, BCBA-D is Clinical Professor of
forensic disability detention orders. He is an Adjunct Pro-
Psychiatry and Health Behavior at the Medical College of
fessor at the University of Queensland’s School of Education
Georgia, Augusta University, Augusta, GA and CEO of
and Adjunct Associate Professor, University of Sydney
MacTavish Behavioral Health, in Raleigh, NC. His interests
Medical School. His research interest is in the application of
include mindfulness, behavioral and psychopharmacological
the UN Convention on the Rights of Persons with Disabilities
treatments of individuals with diverse abilities, assistive
on clinical practice and organizational service delivery, and in
technology, and mental health delivery systems. He is the
disability abuse prevention. Jeffrey was a Finalist in the
Editor-in-Chief of three journals: Journal of Child and Family
Australian Human Rights Award 2010 in the Community
Studies, Mindfulness, and Advances in Neurodevelopmental
Individual Category for his role in disability rights protection
Disorders, and Editor of three book series: Mindfulness in
for those subject to restraints and seclusion.
Behavioral Health, Evidence-based Practice in Behavioral
Health, and Children and Families. Karrie A. Shogren, Ph.D. is a Professor of Special Educa-
tion, Senior Scientist at the Life Span Institute, and Director
Giulio E. Lancioni, Ph.D. is Professor in the Department of
of the Kansas University Center on Developmental Disabili-
Neuroscience and Sense Organs, University of Bari, Italy. His
ties at the University of Kansas. Dr. Shogren has published
research interests include development and assessment of
extensively in the intellectual and developmental disabilities
assistive technologies, evaluation of alternative communica-
field, and her research focuses on assessment and intervention
tion, and training of social and occupational skills for persons
in self-determination and positive psychology, and the
with different levels of disabilities due to congenital
application of the supports model across the lifespan. She is
encephalopathy, neurodegenerative diseases, or acquired
co-Editor of Remedial and Special Education and Inclusion.
brain injury.
Michael L. Wehmeyer, Ph.D. is the Ross and Mariana
Yoon-Suk Hwang, Ph.D. is a research fellow at Learning
Beach Distinguished Professor of Special Education and
Sciences Institute Australia, Australian Catholic University.
Senior Scientist and Director, Beach Center on Disability, at
Prior to her current appointment she lectured in the Depart-
the University of Kansas. Dr. Wehmeyer’s research focuses
ment of Special and Inclusive Education at Griffith Univer-
on self-determination, understanding and conceptualizing
sity. She earned a doctoral degree in Special Education with
disability, the application of positive psychology to disability,
an emphasis on experiences of secondary and post-secondary
conceptualizing and measuring supports and support needs,
school students with autism spectrum disorder who have
and applied cognitive technologies. He is the co-editor of
limited intellectual functioning. Her research interests include
American Association on Intellectual and Developmental
listening to the voices of students with disability and their
Disabilities ejournal, Inclusion.
parents and teachers, the applications of mindfulness-based
interventions for enhancing the quality of their school, family
and community life, bullying, diversity, and inclusivity, and
social-emotional learning and wellbeing.
 Building Positive, Healthy, Inclusive
Communities with Positive Behavior 7
Support

Matt J. Enyart, Jennifer A. Kurth and Daniel P. Davidson

posefully considered when developing these

Envisioning Positive, Healthy,
supports. Limited resources, increased account-
and Inclusive Communities
ability, and disjointed community systems are
common barriers community-support providers
Contemplate for a minute what it means to be
face when including adults with intellectual and
fully included in your community. Is it simply
developmental disabilities in all aspects of the
having an address in the community? Are
community (Schalock, 2012). Additionally, long
friends and a job included in the criteria? What
waiting lists for services and inadequate staff
feelings are associated with a sense of commu-
training often delay or reduce the effectiveness of
nity belonging? Does everyone have a right to
support implementation. This dynamic, com-
full inclusion in their communities? Is it possible
bined with inconsistent community-wide objec-
for communities to ensure the inclusion of all
tives, fragmented systems, lackluster practices,
citizens? Most professionals responsible for
and ineffective program evaluation, can result in
enabling the development and implementation of
a support model which fails to meet the needs of
school, work, home, and community supports
all community members (Schalock, 2012). As a
would respond affirmatively. Communities have
result of these shortcomings, community services
diversified to offer a spectrum of federal, state,
and supports can become punitive, restrictive,
and locally funded supports and services for
and expensive (Nelson, Sprague, Jolivette,
children, youth, families, and adults with various
Smith, & Tobin, 2010a, Nelson, Jolivette, Leone,
strengths and needs. This comprehensive array of
& Mathur, b; Schalock, 2012; Sprague et al.,
academic, vocational, home, and community
2013). As a result, people with intellectual and
supports can address individualized needs and
developmental disabilities, as well as those who
promote inclusion.
engage in challenging behaviors, may be denied
People with intellectual and developmental
full citizenship as they become secluded or
disabilities, however, may not always be pur-
excluded (Morningstar, Kurth, & Johnson 2016).
Across the USA, this reactive, exclusionary
trend is reflected in the disproportionate number
of incarcerated youth and adults with disabilities
and behavioral health needs (Nelson et al.,
2010a, b; Geis, 2013; Quinn, Rutherford, Leone,
M.J. Enyart (&)
J.A. Kurth
Osher, & Poirier, 2005). Equally concerning are
University of Kansas, Lawrence, KS 66045, USA
e-mail: [email protected] the number of youth and adults with intellectual
and developmental disabilities spending the
D.P. Davidson
Intermountain Centers for Human Development, majority of their time in secluded and segregated
Tucson, AZ 85748, USA resource rooms, congregate living homes, and

© Springer International Publishing AG 2017 81

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_7
82 M.J. Enyart et al.

“workshop” settings (Schalock, 2012). Both the There is a direct relationship between the
American Association on Intellectual and behaviors each of us engage in and our envi-
Developmental Disability (AAIDD) and the ronment, existing skills, internal emotional fac-
World Health Organization (WHO) have adopted tors, and access to technology and supports (Carr
the social-ecological model of disability (Schalock, et al., 2002a, b; Carr, 2007; Dunlap et al., 2010).
2013). Through this lens, disability is defined as Unfortunately, as a society we continue to
a mismatch between personal capacities and struggle with delivering appropriate and neces-
environmental demands (Thompson, Schalock, sary individualized environmental modifications,
Agosta, Teninty, & Fortune, 2014). Within this effective behavioral, therapeutic, and socio-
conceptualization of disability, supports are emotional supports, and accommodations to
necessary to bridge the gap between what is those who need them (Freeman et al., 2015). In
(a state of incongruence due to mismatch the absence of these effective community-based
between the person’s competence and the interventions, people exhibiting challenging
demands of the environment) and what could be behaviors are either pushed into secluded work,
(a meaningful life with positive outcomes; home, and school settings, or expelled outright
Thompson et al., 2009). from our communities and placed into psychi-
While the WHO, AAIDD, researchers, advo- atric or correctional facilities. Recent school to
cates, families, self-advocates, and many other prison pipeline research, for example, has high-
stakeholders have begun to shift from disability lighted that more than half of the current cor-
models focusing on deficits, the majority of our rections population in the USA have disabilities
communities and schools are still trailing behind which would have made them eligible for special
in their understanding of disability and commu- education services as children (Geis, 2013;
nity supports. Existing policies, regulations, and Krezmien, Leone, Zablocki, & Wells, 2010;
service models are often driven by diagnosis and Nelson et al., 2010a, b; Quinn et al., 2005). There
deficits versus strengths (Wehmeyer, 2013). are some indications the trend toward segregation
Many professionals, organizations, and systems and expulsion may be changing, however. For
continue to place blame for both behavior and example, McLeskey, Landers, Williamson, and
ability squarely on the shoulders of the person. Hoppey (2012) examined trends in educational
Problems, challenges, and punitive responses are placement for students with disabilities and
emphasized rather than strengths, teaching found a 93% increase in the number of students
desired behavior, and utilizing positive inter- with high-incidence disabilities (e.g., learning
ventions and supports. This tends to be especially disabilities) accessing the general education (in-
true for people with intellectual and develop- clusive) setting between 1990 and 2008.
mental disabilities (Schalock, 2012; Wehmeyer, Such trends reflect the increasing commitment
2013). to including people with disabilities in typical
Environmental contexts affect everyone’s settings and activities in USA and international
ability to obtain optimum quality of life out- law. For example, Article 3 of the United Nations
comes across home, work, school, and commu- Convention on the Rights of Persons with Dis-
nity settings (Carr et al., 2002a, b; Dunlap, abilities (UNCRPD) states persons with disabil-
Sailor, Horner, & Sugai, 2010). A person’s skills, ities should have “full and effective participation
knowledge of surroundings, access to technol- and inclusion in society,” including an inclusive
ogy, and environmental modifications can be a education system (Article 24; United Nations
bridge within each of these environmental set- Convention on the Rights of Persons with Dis-
tings (Thompson et al., 2014), if they are aligned abilities [UNCRPD], 2016). The Americans with
with a person’s support needs and the demands Disabilities Act (1990), as well as federal edu-
of the environment (Carr et al., 2002a, b; Dunlap cation law (Individuals with Disabilities Educa-
et al., 2010). tion Improvement Act, 2004) further protect the
7 Building Positive, Healthy, Inclusive Communities with Positive … 83

rights to inclusive lives of children and adults Park, & Peterson, 2005). The majority of pro-
with disabilities in the USA. fessionals within schools and human service
Despite these mandates, progress toward organizations want to effectively support the
gaining full inclusion, particularly for people youth or adults they work for. However, inef-
with intellectual and developmental disabilities, fective practices, organizations, or systems can
remains limited. For example, in an analysis of result in low morale or a challenging culture
trends in accessing general education settings for (Schalock, 2012). Intellectual and developmental
school-age students with significant disabilities disability organizations face specific and signifi-
(e.g., autism, deaf-blindness, intellectual disabil- cant challenges including dwindling resources,
ity, and multiple disabilities), Morningstar, increased demand for services and supports,
Kurth, and Johnson (2016) found US states have shifts from general to individualized supports,
made remarkably little progress in educating an increased emphasis on personal outcomes,
more students in general education settings. calls for increased effectiveness and efficiency,
Likewise, adults with disabilities struggle to gain resource allocation based on support needs,
access to work and living arrangements in their an emphasis on self-determination and self-
communities. Consequently, states across the direction, and pressure to utilize evidence-based
country have faced scrutiny because adults with practices (Schalock, 2012).
intellectual and developmental disabilities are Given these challenges, it is not difficult to
predominantly secluded in sheltered workshops, understand why there continues to be a trend of
earning subminimum wages, and living in group exclusion of people with intellectual and devel-
homes with roommates they did not choose opmental disabilities. Positive behavior inter-
(Wehmeyer, 2013). ventions and supports (PBIS) provides a proven
Findings from implementation science, posi- framework, using multitiered interventions and a
tive behavior support, and organizational psy- systematic, data-driven approach, which when
chology provide research-based solutions to this implemented effectively, creates a mechanism for
pervasive problem in our communities and all people to achieve quality of life goals and be
schools. Yet, implementing and sustaining evi- fully included across environments (Carr et al.,
dence and research-based practices is difficult 2002a, b; Dunlap et al., 2013). This chapter will
without several critical features in place (Fixsen describe how families, professionals, and orga-
et al., 2005; Schalock, 2012). Across research nizations can utilize PBIS to achieve quality of
studies and fields, the importance of organization life outcomes and contribute to the creation of
culture, environmental context, strong adminis- positive, healthy, and inclusive communities.
trative support, a long-term commitment to
training, effective evaluation, and the willingness
to reframe all systems and procedures are Description and Evolution of Positive
identified (Schalock, 2012). A review of imple- Behavior Interventions and Supports
mentation science research identified core
implementation components include teaching, Positive behavior interventions and supports
coaching, and performance measurement. Addi- (PBIS) has long history of use in teaching skills
tionally, organizational components include the and improving behavioral outcomes for people
selection of the evidence-based practice, program with intellectual and developmental disabilities.
evaluation, administration support, and system- For example, PBIS strategies have been used to
level intervention. Also identified was the influ- improve choice-making and quality of life out-
ence of social, economic, and political factors comes (McClean & Grey, 2012), communication
(Fixsen et al., 2005). Positive behavior support skills (Hetzroni & Roth, 2003), and
and organizational psychology both reflect these self-management skills (Lee, Poston, & Poston,
elements for successful implementation (Dunlap 2007). PBIS has been effectively utilized in a
et al., 2010; Seligman, 2000; Seligman, Steen, variety of settings, including school (e.g., Ross &
84 M.J. Enyart et al.

Horner, 2014), home (e.g., Buschbacher, Fox, & completion of a functional behavior assessment
Clarke, 2004), and across the lifespan (Carr et al., and the creation of function-based interventions.
2002a, b). However, providing individualized Approximately, 5% of students or community
supports for all students in a community, members will require intensive interventions. It is
including those with infrequent problem behav- important to note that even receiving targeted or
iors, is resource-prohibitive and unduly time intensive interventions, students or community
consuming. As a result, system-wide approaches members should also continue to be exposed to
to behavior problems have been developed universal interventions, which are the starting
(Crimmins & Farrell, 2006). point for determining the need for targeted or
System-wide approaches, including school- intensive interventions. Ultimately, the primary
wide positive behavioral interventions and sup- concern of PBIS across all three tiers is to improve
ports (SWPBIS) and organization-wide positive the quality of life of people served, the organiza-
behavioral interventions and supports (OWP- tion, and the community as a whole.
BIS), have been meticulously assembled and Today, critical features of PBIS as a multi-
researched within schools, organizations, and tiered framework have been well defined. Perhaps
community settings. Both are applied through a the most critical of these features is the dedication
multitiered continuum, focusing on teaching to adapting and contextualizing PBIS procedures,
positive, prosocial behavior skills to all students practices, and evaluation to support people across
or members of a school or organization (Hawken environments, systems, and the lifespan. Com-
& O’Neill, 2006; Walker et al., 1996). Specific mitted to the continual expansion of PBIS,
evaluation procedures and practices exist within researchers collaborate closely with stakeholders
each tier, including universal (tier 1), targeted as they use available research and data to modify
(tier 2), and intensive (tier 3; Sugai, Simonsen, features without jeopardizing the science (Carr
Bradshaw, Horner, & Lewis, 2014). et al., 2002a, b; Dunlap et al., 2010; O’Neill,
Universal interventions involve clear and con- Albin, Storey, Horner, & Sprague, 2015). Today,
sistent expectations which are systematically PBIS procedures, practices, and evaluation are
taught, reinforced, and corrected for all service being adapted, utilized, and researched in juvenile
recipients and staff. An example of universal correction facilities, mental health centers, psy-
expectations would be posting and reviewing chiatric residential treatment facilities, intellectual
lunchroom expectations with all students before and developmental disability organizations, and
they enter the lunchroom. When people engage in other alternative settings (Carr et al., 2002a, b;
desired expectations, they are reinforced verbally Dunlap et al., 2010; Nelson et al., 2010a, b;
with positive, specific praise. Approximately, 80% O’Neill et al., 2015; Sprague et al., 2013).
of students or community members respond well While PBIS has resulted in positive out-
to these types of universal interventions. Targeted comes for youth in schools and organizations
interventions include interventions for people who (Horner, Sugai, & Anderson, 2010), significantly
are not responding to universal interventions (ex- less progress has been made regarding home
pected to be approximately 10–15% of people). and community PBIS research, practice, and
An example would be a providing additional policy. In part, this has been due the limited
scheduled times throughout a person’s day to funding community-based, adult services orga-
teach and reinforce expectations. This could nizations have received (Rizzolo, Friedman,
include a specific prosocial skill development Lulinski-Norris, & Braddock, 2013). However,
curriculum or an additional lesson and reinforce- researchers are now able to draw from the
ment on expectations in the lunchroom. Intensive SWPBIS research to reinvest in home and com-
interventions are provided when universal and munity applications of PBIS in collaboration
targeted interventions are not effective in reducing with lessons learned from positive psychology,
challenging behavior and increasing desired quality of life, and person-centered planning.
behaviors. Intensive interventions include the Each is strengths-based and focused on
7 Building Positive, Healthy, Inclusive Communities with Positive … 85

improving outcomes for marginalized popula- included in or accepted as “normal” within their
tions in communities. And, with a primary communities. Normalization researchers believed
objective of improving quality of life, PBIS is everyone has a right to the same opportunities
uniquely situated to improve outcomes for people and that people with disabilities should not be
with intellectual and developmental disabilities. excluded (Nirje 1969; Wolfensberger et al.,
1972). A group of like-minded ABA researchers
looking for an alternative to aversive techniques,
Foundations of Positive Behavior with an increased focus on inclusion, joined Nirje
Interventions and Supports and Wolfensberger to lay the foundations of
PBIS. Their goal for PBIS was to develop a
Throughout history, humanity has not always technology that was preventative and changed
been kind to people who do not readily respond the environmental context, leading to rapid,
to the environmental, social, or behavioral consistent, durable, and generalized change in
expectations placed upon them (Wehmeyer, problem behavior, while facilitating the devel-
2013). For those who have, or who are perceived opment of broad improvements in quality of life
to have, intellectual and developmental dis- with ecological validity (Carr et al., 2002a, b;
abilities, experiences including isolation in Dunlap et al., 2010; O’Neill et al. 2015).
institutional settings, the denial of access to
communities, sterilization, and living in subhu-
man conditions are all too common (Smith & Implementing PBIS Across Settings
Wehmeyer, 2012). Prior to the 1960s in the USA,
people with intellectual and developmental dis- Firmly rooted in applied behavior analysis, PBIS
abilities were largely relegated to institutions, procedures and tools, particularly when imple-
often living in deplorable conditions (Blatt & mented at the intensive, individualized level,
Kaplan, 1966). As these conditions came into include functional behavior assessments (FBA),
public view during the civil rights movement of function-based interventions, and knowledge of
the 1960s, applied behavior analysis (ABA) re- setting events, operations, value of available con-
search emerged demonstrating that all people, sequences, competing behavior response options,
regardless of the significance of their disability, and maintaining consequences (Sugai et al., 1999).
could learn. However, ABA (at the time) relied Intensive positive behavior support interventions
heavily on the use of aversive techniques such as use strategies associated with applied behavior
slapping, pinching, and even shocking people analysis, person-centered planning, and improving
with intellectual and developmental disabilities quality of life. The primary features and overall
to achieve these learning results. Many in the process are the same regardless of the individual.
ABA field felt the new, fast growing discipline of However, PBIS requires that interventions are
ABA lacked oversight and should only be used contextualized to meet the needs of the person, their
when carefully balanced with values. environment, and available resources.
While this debate ensued, researchers Nirje Intensive PBIS interventions start with a
(1969) and Wolfensberger, Nirje, Olshansky, functional behavior assessment (FBA) to deter-
Perske, and Roos (1972) focused on community mine the function of a problem behavior for the
inclusion and social roles of people with intel- person. Observations are completed across
lectual and developmental disabilities. Their environments, times of day, and with various
work defining the normalization principle support staff or family members. The FBA
described how the value placed on people is requires close attention to the setting event,
reflected in how and where they are represented antecedent, behavior, and consequence. Setting
in the community. People perceived as having events can be anything that alters the likelihood
low social worth are treated poorly and not of behavior by momentarily altering the value of
86 M.J. Enyart et al.

a reinforcer or punisher (Horner, Vaughn, Day, considered to develop a hypothesis to explain the
& Ard, 1996). For example, a setting event could function of each of the behaviors. This should be
be a crowded or loud room. A person with done carefully as it is possible the same behavior
hypersensitivity to sound or crowds may be more may serve a different function in a different
likely to engage in physically aggressive behav- environment, at an alternative time of day, or
ior when these setting events are present in order with another support provider. Each person’s
to communicate that they want to escape the person-centered planning team, those who know
noise, particularly if no other communication the person best, should be actively involved in
supports are in place. Setting events are like hypothesizing the function of the behaviors and
primers or slow triggers—they set the stage, should assist with creating function-based
making an antecedent more or less likely to elicit interventions.
a problem behavior. Antecedents, also called fast Once the functions of a behavior are identi-
triggers, are what occur immediately before the fied, the team should identify the desired
behavior occurs. For example, a person with behavior and replacement behavior or skill to be
hypersensitivity to sounds and crowds might taught. Importantly, the replacement behavior
shove someone immediately after they entered should serve the same function as the problem
his personal space and said “hello,” if they are in behavior. In our example, teaching the person to
a loud, noisy room. Saying “hello” is the ante- request more personal space or to choose not to
cedent in this case because it triggered the go to crowded, noisy environments may be
problem behavior (shoving). The person would necessary. Teaching replacement skills is critical
not shove another when greeted, however, if they to individualized positive behavior support
were in a quiet place (setting event). Nor would interventions. By teaching the person the
he shove if a person did not say “hello” and behavior or prosocial skills needed to effectively
entered his personal space (antecedent). achieve the same or a similar maintaining con-
In completing the FBA, the observer takes sequence, and making environmental adjust-
detailed notes to operationalize the behavior. ments as needed, we are not just addressing one
A clear operational definition of the behavior challenging behavior but are improving a per-
increases the likelihood all team members son’s skillset and increasing the tools each per-
observe and record the challenging behavior in son has to achieve their desired quality of life.
the same way. This is critical in determining the Individualized PBIS is strengths-based and dri-
function of the behavior and when collecting pre- ven by a person-centered plan in which a person
and post-intervention data. For the purpose of is ensured their voice and choice as they identify
conducting the FBA, the consequence is any their dream for the future and collaborate with
response immediately following the behavior. If their team to identify their goals and related
the person described previously was removed action steps.
from the noisy and crowded room after shoving The end result of the individualized PBIS
his fellow party guest, thus escaping from the process is a comprehensive plan that includes
crowd and noise, he is accessing a reinforcing tenants of individualized planning, applied
consequence (or what he hoped to achieve— behavior analysis, and measurable quality of life
avoid the noise and crowd). Observations should outcomes. These plans should be dynamic, sus-
occur across environments, at different times, and tainable, and linked to the settings the person
with different people. In addition to observing values. One strategy for doing so is use of the life
challenging behaviors, the observer should also outcomes through integrated systems (LOTIS)
work to identify the person’s preferences, wheel. The LOTIS wheel is a framework to
strengths, and where, when, and which events do implement multitiered PBIS interventions across
not elicit challenging behaviors. home, school, work, and community contexts by
Collectively, these operationalized behaviors embedding quality of life domains across each
and comprehensive observations are all context (Freeman et al., 2015). As a planning
7 Building Positive, Healthy, Inclusive Communities with Positive … 87

tool, person-centered teams work through each of to the quality of life of those who support
the domains and identify the individual needs people who demonstrate challenging behaviors
and universal, targeted, or intensive supports to at home and at school, necessitating greater
achieve domain-related goals. focus on strengths-based supports such as those
emerging in positive psychology and PBIS to
address challenging behaviors and the needs of
Promoting Strengths-Based all members of the support team.
Approaches for All Members Paid support providers, including school
of the Team teachers and community-based support provi-
ders, also can experience threats to their quality
The role of support providers in promoting of life by virtue of challenging behaviors. For
quality of life and implementing PBIS is critical example, student problem behavior affects tea-
and in addition to the focus on implementing cher stress levels and can negatively impact the
individualized or organization-wide PBIS, it is student–teacher relationship (Schaubman, Stetson,
also important to understand the impact of acting & Plog, 2011). Likewise, student challenging
as a change agent (i.e., support provider) on behavior can impact teacher emotional
quality of life for this support providers, and the well-being, with challenging behavior associated
impact this has on people with intellectual and with increased teacher burnout and emotional
developmental disabilities. People providing exhaustion when not effectively addressed
support and instruction often experience sub- (Hastings & Brown, 2002). Additionally, people
stantial impacts on their own quality of life. working with students who engage in aggressive
Support providers, particularly parents, can behaviors, usually due to lack of communication
be at risk of experiencing reduced quality of life and other supports, are at risk of physical harm
related to their children’s problem behaviors (Finlayson, Jackson, Mantry, Morrison, &
and the inherent difficulty associated with Cooper, 2015; Langone, Luiselli, Galvin, &
managing these behaviors, while maintaining Hamill, 2014). Furthermore, paid support provi-
their child’s dignity if appropriate supports are ders can be at risk of financial hardships by virtue
not in place. The presence of challenging of their profession. Teachers and community-
behaviors, including self-injury and aggression, support providers (e.g., job coaches, group home
has be associated with family breakdown and managers) often experience low pay, limited
financial strain without appropriate supports, as career ladder opportunities, and an overall low
the management of these behaviors can be status compared to non-caregiving professions.
labor- and resource-intensive (Oliver, Petty,
Ruddick, & Bacarese-Hamilton, 2012). Parents
of children who engage in challenging behavior Functional Behavior Assessment
report experiencing chronic stress, which in turn and PBIS in Context
can be associated with coercive parenting
practices and the entrenchment of problem With these challenges in mind, the potential
behaviors (Singh et al., 2007), again, when benefits of positive psychology in supporting all
effective supports are not in place. Finally, members of the support team in implementing
parents of children who engage in frequent PBIS to impact quality of life outcomes for
problem behaviors can also experience isola- people with intellectual and developmental dis-
tion, exhaustion, concerns about their safety and abilities cannot be understated. One aspect of
the safety of other family members, home positive psychology involves “benefit finding,”
expenses, a difficulty to fulfill need for respite defined as identifying the positive effects that
care, and limited professional supports result from a traumatic event (Helgeson,
(Hodgetts, Nicholas, & Zwaigenbaum, 2013). Reynolds, & Tomich, 2006), such as the pres-
Together, these experiences can result in threats ence of challenging behaviors, or the broad range
88 M.J. Enyart et al.

of positive changes that emerge following stress better understand how parent attention may
(Bower, Hales, Tate, Rubin, Benjamin, & Ward, have been reinforcing child behavior prob-
2008). Benefit finding has been studied in many lems in some routines and escape from parent
areas of human trauma or adversity, including demands reinforced others. They also found
with people that experience cancer, parents of evidence to suggest that the temporary ter-
children with severe health problems, people mination of child behaviors reinforced par-
who have experienced heart attacks, war veter- ental behavior. This pattern, sometimes called
ans, people with HIV/AIDS, people with Alz- a coercion cycle, occurs when parents and
heimer’s disease (Farran, Miller, Kaufman, children “train” each other to act in certain
Donner, & Fogg, 1999) and with Asperger syn- ways. For example, when parents demand
drome (Pakenham, Sofronoff, & Samios, 2004). compliance, children increase their problem
Strengths-based outcomes and perspectives on behaviors, and parents reduce their demands.
raising a child with a disability have been iden- This cycle can be changed, but must be
tified (Hebert & Koulouglioti, 2010). For exam- identified to enable change and
ple, Scorgie and Sobsey (2000) relate how parents strengths-based interventions.
identify benefits associated with having a child 2. Develop Behavior Support Plans that:
with a disability, including learning about them-
selves, feeling greater success and confidence, (a) Include functionally equivalent replace-
developing compassion, and feeling stronger ment behaviors so that support providers
spiritual convictions and a stronger sense of what can enable people with intellectual and
is important in life. Often, parents identify the developmental disabilities to communi-
contributions that their child makes to their family cate what they want and reduce the need
and the world, stating they would not change their for challenging behavior.
child (Myers, Mackintosh, & Goin-Kochel, (b) Focus on prevention so that support pro-
2009). Positive psychology research focused on viders have fewer challenging behaviors
building on character strengths, such as that to address.
described in Chap. 13, provides important infor- (c) Replace support provider person with
mation for building on these identified strengths, intellectual and developmental disability
rather than focusing on challenges. coercion cycles with interaction patterns
Yet many support providers, including family that support the positive and effective
members and paid providers, lack access to behavior of both.
effective strengths-based supports and interven- (d) Allow for supports that enable all parties
tions. However, emerging research from PBIS to find the relevance of the plan to their
and positive psychology, when considered toge- own personal goals.
ther, provide direction for support teams imple-
menting individualized supports. These include 3. Enable support providers and people with
the following: intellectual and developmental disabilities
to identify and define positive things in life.
1. Conduct quality FBAs within relevant In a Web-based study by Seligman et al.
contexts that include analysis of the inter- (2005), the authors evaluated the influence of
action between people with intellectual and various exercises on participants’ happiness,
developmental disabilities and their sup- including the following, each of which could
port providers (sometimes called coercion be embedded in PBIS interventions:
analysis). Lucyshyn et al. (2004) demon-
strated how coercion analysis within typical (a) Complete a gratitude visit. Write and
family routines could be used to see how the deliver a letter of gratitude to someone
parent–child interaction influenced behavior. who has been kind, but has not been
They observed parent–child interactions to properly thanked.
7 Building Positive, Healthy, Inclusive Communities with Positive … 89

(b) Identify three good things in life. List 5. Enable support providers and people with
three things that went well each day, intellectual and developmental disabilities
every night, for one week. Then, provide to experience the success of using their
a causal explanation for each good thing. strengths. Promote greater recognition not
(c) Describe you at your best. Write about a only of the success associated with changes in
time you were at your best. Reflect on the the behavior of people with intellectual and
personal strengths you displayed. Then, developmental disability, which is not always
review the story once every day for a immediate, but also in the support provider. If
week and reflect on the strengths the definition of success also includes mea-
identified. sures of how well the support provider used
(d) Use signature strengths in a new way. their character strengths, then support provi-
Complete an inventory of character ders can experience reinforcement and quality
strengths online at (www. of life, alongside people with intellectual and
authentichappiness.org) and receive indi- developmental disabilities.
vidualized feedback about your top five 6. Enable support providers and people with
“signature” strengths. Use one of these intellectual and developmental disabilities
top strengths in a new and different way to use approaches developed in positive
every day for one week. psychology, including mindfulness (see
Chap. 6), building on character strengths
4. Enable support providers to see how fol- (see Chap. 13), and promoting autonomous
lowing the behavior support plan can motivation (see Chap. 19) to experience
provide them with opportunities to expe- positive outcomes. Using these approaches
rience positive outcomes aligned with their enhances the well-being of all members of the
strengths identified in the previous step. team and can facilitate environmental con-
texts that reduce the need for problem
(a) If support providers want to be more behavior.
compassionate, then provide strategies to 7. Enable support providers and people with
address this, such as acknowledging the intellectual and developmental disabilities
feelings of a person with an intellectual or to self-monitor their own behavior,
developmental disability after the episode thoughts, feelings, and use of strengths.
is over (not during). Create strategies that support providers can
(b) If support providers want to be more use to monitor the things they want to change
patient, provide strategies to ignore (as or build on in themselves (e.g., reminders to
long as this is not dangerous) challenging practice, using a rating scale to
behaviors, allowing them to dissipate self-evaluation, etc.). Questions such as the
naturally. following can be useful:
(c) If support providers want to be more
effective, teach prompting strategies for (a) Did I acknowledge the person’s feelings
replacement and alternate behaviors. only after the episode ended?
(d) If support providers want to be more firm, (b) Did my praise outweigh my criticism?
teach them not to give into demands, but (c) Did I prompt the replacement behavior?
instead to solicit replacement behaviors (d) Did I identify ways to redesign the
and reinforce those. environment to make problem behavior
(e) If support providers want to be more con- less effective?
fident. then provide strategies for preven- (e) Do I feel more confident about my ability
tion, including changing the environment. to handle difficult situations?
90 M.J. Enyart et al.

Creating Positive Culture work environment and activity can also be

and Consistent Expectations stressful, and demands associated with the envi-
in Organizations ronment and activities can limit one’s motiva-
tion. Promoting happiness in such environments
Organizations, just as individuals, all have their can be enhanced by “keeping a balance between
own personalities, characteristics, and behaviors, being consumed by a job that seems over-
each of which creates unique environmental whelming with no relief in sight and the ‘perfect’
demands for all people within the organization. job environment” (Davidhizar & Hart, 2006,
Some organizations can feel warm and welcom- p. 67).
ing with happy, productive employees. Others So what makes difficult work rewarding?
can feel cold and unapproachable with low Locke and Latham (1990) assert work that is
morale and inconsistent outcomes. Whether a challenging and focused on specific goals is most
business focuses on painting houses, developing rewarding to employees. Employees must be
Web sites, or helping humans achieve their committed to the goals, and some value must be
goals, they all require similar core systems, associated with goal attainment (e.g., money,
practices, and data to achieve their objectives. personal meaning). When employees have clear
Organization-wide PBIS (OWPBIS) and goals and high intrinsic motivation to achieving
school-wide PBIS describe the universal imple- those goals, employees persist longer at tasks.
mentation phase as a time when leadership teams Likewise, completing tasks in which employees
are developed to systematically improve quality feel successful contribute to more self- and
of life and decrease problem behaviors for all of task-satisfaction, pride in performance, and sense
those served by the organization (Sugai & Hor- of achievement. Finally, employees who are
ner, 2010). As described previously, there is a satisfied tend to stay on the job and be good
need to focus on the behavior and needs of all citizens (e.g., help co-workers, do extra work),
people in the organization, not just those served while dissatisfied employees are more likely to
by the organization, when implementing OWP- quit, be absent, file grievances, and put in less
BIS. In this section, we describe how support effort. Together, these findings suggest the
providers, who often work in challenging cir- importance of setting specific, challenging goals
cumstances, can be supported to find happiness to guide the work of PBIS support providers.
and meaning in their work through OWPBIS and This may include goals for how the support
positive psychology. provider will set up the environment for
improved success to enhance individual out-
comes (such as those described in previous sec-
Finding Happiness and Optimism tions), or specific goals for how a support
in Challenging Work provider will react to and support a person with
an intellectual and developmental disability when
Positive psychology informs us of the impor- faced with a challenging behavior.
tance of happiness, personal meaning, and pur- The work of providing support has several
pose in one’s life. When contextualized in the unique challenges that contribute to high staff
support provision relationship associated with turnover and low employee motivation (e.g., low
delivery of PBIS, there are several implications. pay, low status). Further, the skills required for
Sometimes, work itself is intrinsically motivat- such work are largely unrecognized, often go
ing. Such work is “marked by the interest, unnoticed, and are poorly rewarded (Payne,
curiosity, continued learning, and spirit of chal- 2009). Support providers may experience poor
lenge experienced by an employee when stimu- working conditions and a lack of organizational
lated by the work itself rather than external support (Johnson, 2015). Consequently, many
outcomes (Deci & Ryan, 1985)” (Guo, Liao, support providers may feel emotionally involved
Liao, & Zhang, 2014, p. 733). However, any with their work, but in a nonsupportive
7 Building Positive, Healthy, Inclusive Communities with Positive … 91

organization context can become emotionally Enhance the Focus on Quality of Life
exhausted, and have difficulty separating from Outcomes
the support role (Johnson, 2015), all of which
can lead to less positive outcomes for the person Much of the PBIS literature remains focused on
with an intellectual or developmental disability. devising interventions and measuring the fidelity
Emerging research in positive psychology and of those interventions, with the focus on chang-
agency in work may be informative in improving ing the behavior and skills of the person with an
the conditions and quality of life of support intellectual or developmental disability. How-
providers, and enhancing the outcomes of people ever, this does not bring enough attention to the
with intellectual and developmental disabilities. desired quality of life outcomes for the person,
Agency is “the capacity [of a support provider] to nor the relationship of the person to the members
make an impact or exert power” (Gourd, 2016, of the support team and their experiences and
p. 6). Most support providers have agency within outcomes. Understanding the support team and
constraints. For example, PBIS policies may the organizations that provide support not only
require support providers to act on a behavior benefits the person, but also all members of the
when it is deemed dangerous to the person or to support team. Integrating OWPBIS and positive
others. Because this notion of “danger to self and psychology strategies can potentially further
others” is ill-defined, support providers have the enhance individual quality of life, as well as
choice to act based on their own convictions and support provider and organizational outcomes,
philosophies. In these situations, support provi- and further research and practice strategies are
ders may reproduce the status quo or may use needed.
this as an opportunity to build communication
skills, identify motivating factors, and improve
the quality of life of the person served. Promot- Moving Research into Practice
ing greater agency can lead to greater motivation
and more positive outcomes for everyone. The challenge of bridging the research to practice
gap is well established (e.g., Hood, 2002;
Shonkoff & Bales, 2011). Researchers struggle to
Directions for Future Research effectively disseminate research findings, and
and Practice practitioners struggle to translate research into
practice (Cook, Cook, & Landrum, 2013). Thus,
In this chapter, we have discussed the relation- the field of implementation science has emerged
ship between positive psychology, PBIS, and (Fixsen et al., 2005). Implementation science is
quality of life outcomes. We have focused on focused on what will be implemented, how it will
how to put functional behavior assessment in be implemented, and who will do the work of
context with a particular focus on the roles and implementation (Ogden & Fixsen, 2014). Ogden
well-being of support providers and the need for and Fixsen summarize obstacles and facilitators
creating positive cultures and consistent expec- of implementation as being associated with
tations within organizations. Each of these fac- “characteristics of the innovation itself, the pro-
tors is critical to create supportive environments vider, the practitioner adopting the practice, the
that promote positive outcomes for all members client or consumer, and the inner and outer
of a community. However, ongoing work is concept of the service delivery organization”
needed to integrate PBIS and tenants of positive (p. 5). Thus, establishing a strong contextual fit
psychology. between the support provider, the intervention,
92 M.J. Enyart et al.

and the service recipient is critical. Yet how this support: Evolution of an applied science. Journal of
can be done, at scale, is not well understood. Positive Behavior Interventions, 4, 4–16.
Cook, B. G., Cook, L., & Landrum, T. J. (2013). Moving
Lessons learned from implementation science, research into practice: Can we make dissemination
including the importance of finding a good bal- stick? Exceptional Children, 79, 163–180.
ance between treatment integrity and local Crimmins, D., & Farrell, A. F. (2006). Individualized
adaptation, and responding constructively to behavioral supports at 15 years: It’s still lonely at the
top. Research & Practice for Persons with Severe
variability and focusing on continuous improve- Disabilities, 31, 31–45. doi:10.2511/rpsd.31.1.31
ment will all be critical to fully implementing Davidhizar, R., & Hart, A. (2006). Are you born a happy
PBIS in communities. person or do you have to make it happen? The Health
The expansion of organization-wide PBIS, the Care Manager, 25, 64–69.
Deci, E. L., & Ryan, R. M. (1985). Conceptualizations of
critical role of quality of life, the combination of intrinsic motivation and self-determination. In Intrin-
the two as represented in the LOTIS wheel sic Motivation and Self-Determination in Human
framework, and additional strategies from posi- Behavior (pp. 11–40). US: Springer.
tive psychology outlined in this chapter, all Donaldson, S., & Ko, I. (2010). Positive organizational
psychology, behavior, and scholarship: A review of
require additional research and evaluation within the emerging literature and evidence base. The Journal
the context of intellectual and developmental of Positive Psychology, 5(3), 177–191.
disabilities organizations, other human service Dunlap, G., Kincaid, D., & Jackson, D. (2013). Positive
organizations, and communities as a whole. behavior support: Foundations, systems, and quality of
life. In M. Wehmeyer (Ed.), The Oxford Handbook of
Careful, ongoing evaluation and research is Positive Psychology and Disability (pp. 303–314).
needed as researchers, practitioners, policy New York: Oxford University Press.
makers, and advocates collaborate to build pos- Dunlap, G., Sailor, W., Horner, R., & Sugai, G. (2010).
Overview and history of positive behavior support.
itive, healthy, and inclusive communities.
In W. Sailor, G. Dunlap, G. Sugai, & R. Horner
(Eds.), Handbook of positive behavior support
(pp. 3–16). New York: Springer.
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Author Biographies
Matt J. Enyart M.S.Ed., is the Director of the Kansas Daniel P. Davidson Ph.D., BCBA-D is the Director of
Institute for Positive Behavior Support, at the University of Program Training for Intermountain Centers for Human
Kansas. He has more than twenty-five years of experience Development in Arizona. Prior to that he was the Positive
promoting and supporting full inclusion for individuals with Behavior Support program director at the Institute for Human
intellectual and developmental disabilities. His research and Development at Northern Arizona University. There he cre-
work focuses include applications of the PBS framework and ated the state’s first BACB®-approved Graduate Certificate
multi-tiered interventions within community and alternative program and directed PBISAz, building the state’s capacity to
settings, inclusive community and education practices, indi- support schools and districts in their efforts to implement
vidualized planning models, and quality of life evaluation. Positive Behavior Intervention and Supports. Through his
Jennifer A. Kurth Ph.D., is an Assistant Professor in the students, his advocacy, his consultation and his example, Dan
Department of Special Education, and Principal Investigator has translated research to practice for parents, teachers and
at the Kansas Institute of Positive Behavior Support, at the other caregivers, helping them reduce challenging behavior,
University of Kansas. Her research focuses on inclusive improve relationships, and live up to their own highest
education practices, and inclusive teacher preparation, for expectations.
learners with extensive and pervasive support needs.
 The Mindfulness-Based
Individualized Support Plan 8
Monica M. Jackman, Carrie L. McPherson,
Ramasamy Manikam and Nirbhay N. Singh

of life (Harris & Greenspan, 2016). This has

Introduction
resulted in a change in the nature of service pro-
vision, and, instead of the traditional treatment
Treatment plans, the bedrock of medical and
plan, a person-centered plan of support is now the
mental health services, are grounded in the
sine qua non for providing services to people with
medical model of care, which assumes that dis-
intellectual and developmental disabilities (Ratti
eases, disorders, and deficits can be overcome
et al., 2016). Person-centered planning is a
with professionally developed plans of care.
collaborative effort between the person and the
When applied to people with intellectual and
person’s treatment team and significant others
developmental disabilities, this model of care
(e.g., family members, friends) that results in the
equates providing services with remediation of
development, caregiver training, and implemen-
the deficits or impairments associated with the
tation of an individualized support plan for
disability. As our understanding of the civil
achieving the individual’s personal goals.
rights of institutionalized persons, especially
Historically, the focus of person-centered
people with intellectual and developmental dis-
service plans was on health, safety, and devel-
abilities, has become more nuanced and socially
opment of skills, often without any consideration
enlightened, there has been a gradual shift over
being given to the individual’s personal goals in
the last few decades in the type and nature of
life (Bigby & Frawley, 2010; Holburn, 2002).
service systems utilized for them. The current
While this was a move in a positive direction,
disability-related policies and programs empha-
even this shift in service provision failed to
size individual empowerment, strengths, self-
consider the civil rights of people with disabili-
determination, choices, preferences, and quality
ties as individuals with a capacity for self-
determination, control or choice and did not go
beyond assessment and treatment of functional
M.M. Jackman (&) deficits of the person. One of the key constraints
Little Lotus Therapy and Consulting, Port St. Lucie, was that the person’s treatment team controlled the
FL 34952, USA
collaborative process and often engaged in benev-
e-mail: [email protected]
olent decision making on behalf of the person,
C.L. McPherson
instead of following the lead of the person with a
College of Education and Human Services, Murray
State University, Murray, KY, USA disability. Several advocates realized this problem,
and various “true” person-centered models were
R. Manikam
University of Kentucky, Lexington, KY, USA developed, such as the essential lifestyle planning
process (Smull & Burke-Harrison, 1992), personal
N.N. Singh
Medical College of Georgia, Augusta University, futures planning (Mount & Holburn, 1996), and the
Augusta, GA, USA McGill action planning system (MAPS; Forest &

© Springer International Publishing AG 2017 97

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_8
98 M.M. Jackman et al.

Lusthaus, 1989; Vandercook, York, & Forest, turns out to be an exercise in treating the docu-
1989). Within this diversity of models, the defining mentation for external reviews and quality assur-
characteristics of a person-centered approach ance rather than in support providers actually
included the following (Schwartz, Jacobson, & providing services that enhance quality of life.
Holburn, 2000, p. 238): Treatment teams often write individualized goals to
address skill areas that are easy to implement and
1. The person’s activities, services, and supports measure in a clinical setting, but do not necessarily
are based on his or her dreams, interests, contribute to the individual’s meaningful engage-
preferences, strengths, and capacities. ment in daily life. Authentic person-centered care
2. The person and the people important to him involves more than a change of the domains within
or her are included in lifestyle planning and the treatment planning process; it also requires a
have the opportunity to exercise control and mindshift among the treatment team members to a
make informed decisions. state of open minded non-judgmental engagement.
3. The person has meaningful choices, with These findings have resulted in alternative approa-
decisions based on his or her experiences. ches to care, such as the active support model
4. The person uses, when possible, natural and (Toogood, Totsika, Jones, & Lowe, 2016).
community supports. In this chapter, we describe a field-tested model
5. Activities, supports, and services foster skills of service provision that is grounded in positive
to achieve personal relationships, community psychology (Wehmeyer, 2014), self-determination
inclusion, dignity, and respect. (Wehmeyer & Shogren, 2016), and mindfulness
6. The person’s opportunities and experiences (Shonin, Van Gordon, & Singh, 2015; Singh,
are maximized, and flexibility is enhanced 2014), with an emphasis on growing the strengths
within regulatory and funding constraints. of people with intellectual and developmental dis-
7. Planning is collaborative, is recurring, and abilities (Shogren, Wehmeyer, Buchanan, &
involves an ongoing commitment to the person. Lopez, 2006). This model, the Mindfulness-Based
8. The person is satisfied with his or her activ- Individual Support Plan (MBISP), triangulates
ities, supports, and services. supports for individuals with intellectual and
developmental disabilities, their family members,
A recent systematic review of the effectiveness and paid support providers. The MBISP is based on
of person-centered planning for people with intel- a mindful engagement approach to person-centered
lectual and developmental disabilities found the services that is in compliance with the Interpretive
evidence for the general effectiveness of this Guidelines for ICF/IID State Operations Manual
approach to be limited and of low quality (Ratti (Centers for Medicare and Medicaid Services
et al., 2016). While there was some indication of [CMS], 2015). The MBISP provides a
positive outcomes (e.g., in community participation, present-focused positive approach that builds on
participation in activities, and daily choice-making), incremental, dynamic, short-term achievable goals,
the anticipated transformative change in the quality which telescope into an enhanced quality of life for
of life of people with IDD has not been fully real- individuals with IDD.
ized. Apparently, what happens in practice is often
somewhat removed from the principles of person-
centered planning because of local conditions of Mindfulness-Based Individualized
support—fiscal management priorities, staff short- Support Plan
ages, time, skill level of staff, length of support
plans, understanding the intent of person-centered Mindfulness
plans—and implementation degenerates into what
is convenient for the staff (Singh, 2016). While Mindfulness is the art of being present in each
treatment teams still develop long and complex moment, thereby paying attention to whatever
person-centered support plans, the process often you are (or should be) engaged in, and being
8 The Mindfulness-Based Individualized Support Plan 99

aware of everything that goes on around you and doing. Being present can bring enjoyment and
in your mind and body. It is an art because anyone opportunities that might be missed if a person is
can develop mindfulness through various lifestyle doing a task out of a sense of obligation, for
practices, with mindfulness meditation and/or extrinsic reward, or to avoid the consequences for
specific cognitive strategies being the most com- not doing it. Mindful engagement is a way of
mon approaches. Mindfulness has been defined as living and interacting with other people and the
“the awareness that emerges through paying environment that can be learned through the
attention on purpose, in the present moment, and practice of mindfulness meditation.
nonjudgmentally to the unfolding of experience Mindfulness can be developed through medi-
moment to moment” (Kabat-Zinn, 2003, p. 145). tation and cognitive training. Some people with
This definition has been used widely in scientific intellectual and developmental disabilities may
studies of meditation, but the concept of mind- have limited skills needed to practice formal
fulness defies a unitary definition in the scientific mindfulness meditation, but they can learn to be
sense because it is an inexact western translation mindful through other activities that hold their
of a Pali word, sati, which could be roughly attention and provide an enriched environment to
translated as remembering to be present (Singh enhance awareness. Others might not be able to
et al., 2008). In a practical sense, mindfulness “is experience mindful engagement without the sup-
not thinking, but experiencing from moment to port of caregivers. Many people with intellectual
moment, living from moment to moment, without and developmental disabilities depend on others to
clinging, without condemning, without judging, support them and to enable them make decisions
without criticizing choiceless awareness…. It about what they will do, where they will go, and
should be integrated into our whole life. It is what they will learn and explore each day. Often,
actually an education in how to see, how to hear, caregivers, therapists and team members develop
how to smell, how to eat, how to drink, how to plans to keep people safe and to follow the rules
walk with full awareness” (Munindra in Knaster, and regulations set by surveyors and funding
2010, p. 1). This definition approximates how agencies (e.g., CMS). However, these plans do not
mindfulness is used in MBISP to provide care and always make the person’s life better or more
support of people with intellectual and develop- enjoyable and can often result in the person being
mental disabilities, and supports for their parents, subjected to tasks and learning activities that are
family members, teachers, and paid staff. non-functional and meaningless. Too often the
individual support plan (ISP) focuses on what paid
staff will do to address or compensate for the
Mindful Engagement person’s limitations rather than on how the staff
can use the person’s current abilities and interests
Mindful engagement is a way of living life to its to create engagement opportunities for them.
fullest and thriving even in the face of impair- The MBISP approach to care and support is
ments or difficult life circumstances. It involves designed to give staff tools to develop plans that
the active investment of one’s self into daily make an individual’s life better by discovering
activities, with a focus on engagement rather than enjoyment in each day. It enables staff to focus on
on outcomes or rewards (Jackman, 2014). noticing and building on the strengths of the per-
Engagement is different from doing or participat- son rather than on working to eliminate challeng-
ing in that it requires one to be fully attentive to ing behaviors or compensate for limitations.
what is happening in each moment as well as being
aware of everything else that is happening. Par-
ticipation, or doing things just to get them done, Mindfulness in Action
can result in going through the motions of com-
pleting a task in a mindless manner. Mindful Before support providers can enable others to
engagement is the state of being present while have better lives, they must first develop and
100 M.M. Jackman et al.

enhance their own skills for being present, aware, treatment team based on goals related to medical
and mindful in daily life. Mindfulness is the and psychiatric care, health risks, or skill building
ability to be fully in the present while paying to achieve treatment goals. In contrast, the MBISP
attention to what is in front of you, being aware of planning is focused on improving each person’s
what is within and around you, and doing it with quality of life in the immediate and long-term,
an open heart, without judgment or expectation. with an emphasis on self-determination, opportu-
Mindfulness is our hidden natural state. However, nity, preferences, and choices. In other words,
without explicitly training the mind, we let it while the traditional ISP may incrementally
incessantly jump around and think about the past enhance the person’s skills and reduce challenging
or future and at times fail to attend to what is behaviors, the MBISP supports each person’s goal
going on around and in front of us. We can also of a life worth living, no matter what challenges
find ourselves hurrying so much to get things she or he faces. Table 8.1 shows some of the
done that we forget to enjoy what we are doing. differences between the ISP and the MBISP
We can become overwhelmed by responsibilities, approaches to care and treatment planning.
feelings, and thoughts to the point that it causes A key aspect of the MBISP planning process
stress, anxiety, compassion fatigue, and burnout. is that all treatment team members—caregivers,
Support providers can learn to live mindfully clinical and professional staff, family members,
by practicing mindfulness meditation. This is a friends, and significant others—are always in a
simple practice of focusing on a chosen object, support role. If the person with intellectual and
usually the breath, to improve one’s ability to developmental disabilities cannot make a choice
stay present and aware. MBISP includes medi- due to functional limitations, the choice is made
tation training for support providers that can help by parents and significant others who know the
them to develop mindfulness so that they not person well. However, even then, the MBISP
only feel better, but also are more effective in approach requires that the suggested option(s)
supporting people with intellectual and devel- advanced by others be presented to the person as
opmental disabilities to have a better quality of a choice and be modified and individualized in
life (Singh et al., 2016b, c). Being mindful with such a way that the person can indicate a pref-
the goal of helping others is called right mind- erence (Samaha, Bloom, & Koehler, 2016). The
fulness or mindfulness in action. Practicing essence of the approach is to acknowledge that
mindfulness while caring for others can improve not being able to indicate a preference or choice
our ability to notice important things, stay calm, is never a shortcoming of the person, but a lim-
cope with stress, and remember to act with loving itation of the service system in not finding a
kindness, compassion, and joy. better way to make it possible for the person to
display self-determination, indicate preferences,
and make choices. There is always another way
MBISP Versus Traditional Individual of presenting choices in a manner that is func-
Support Planning tional and meaningful to the person, regardless of
his or her apparent limitations.
To better understand the MBISP approach, it can
be helpful to compare it to the traditional ISP or
individual life plan (ILP). The traditional ISP The MBISP Template
treatment planning, which is aligned with a
medical model of care, tends to be more focused The MBISP is a dynamic document that is
on a person’s physical and mental disabilities, completed with the person’s input and then
medical and psychiatric disorders, and physical continually updated as he or she progresses
and functional deficits. While the ISP approach is through successive short-term goals and objec-
nominally “person-centered,” it often results in tives. Figure 8.1 presents the MBISP template.
planning for daily activities that are chosen by the The document is short by comparison with
8 The Mindfulness-Based Individualized Support Plan 101

Table 8.1 Comparative characteristics of the ISP and MBISP approaches to treatment planning
Individual Support Planning Mindfulness-Based Individual Support Planning
Institutionalized schedule Individualized routines
Schedule and times for activities such as bathing and Routines and daily activities are scheduled based on
eating are determined by supervisors and usually based each person’s needs and rhythms. Example: John is very
on hospital and staff schedules. Example: Everyone tired in the morning because of medication side effects,
bathes in the morning and then has breakfast at the so he can choose to sleep in, eat breakfast later in the
same time morning, and take a bath in the evening
Activities are done when and where it is convenient to Activities are done when and where they best support
the daily schedule. Example: Jane works on range of the person to be engaged. Example: Jane works on
motion in the therapy clinic range of motion during bathing and dressing, since
these are the tasks that she needs range of motion for
Reaction Response
Changes to a person’s treatment are often done after Changes to a person’s treatment plan are made, as
something has happened. Example: Michael gets a needed, based on ongoing awareness of things that are
temporary wheelchair and starts being seen at physical noticed by paying attention to the person before
therapy after he falls and breaks a hip something happens. Example: A caregiver notices that
Michael is becoming a little wobbly when walking on
uneven surfaces. She contacts the physical therapist
who adds balance activities to Michael’s home therapy
program using dance moves and music (done outside on
the grass) that Michael has selected and enjoys
Assisting and Teaching Support
Staff uses set plans to teach a person how to do Caregivers provide just the right amount of support that
something in a specific way and sequence (i.e., in a task the person needs based on their awareness of how the
analysis format). Only the team members who write person is doing in that moment. Caregivers use the plan
them can change the plans. Example: To teach Mary to as a guide and use observation of individual’s cues and
eat independently, start with assisted handhold, then instinct to adjust the level of support as needed.
move to maximum assistance, then move to moderate Example: Since Mary is often tired in the afternoon and
assistance. Change the goal after the individual meets evenings, the caregiver gives her more assistance with
each step for two months holding her spoon. During breakfast, Mary can almost
hold her spoon independently as she has more energy
and, breakfast is her favorite meal
Prescribed activities or exercises Activity engagement
Activities or exercises to build skills to meet a goal or to Activities that work on skills to support a person to
reduce risk. These are usually done as part of a program improve ability to engage in things that he/she enjoys.
that involves a number of repetitions or minutes and These activities are more flexible, functional for the
requires data collection. Example: Anthony stands for person, can be improved by staff creativity and
15 min in the standing box, has range of motion to his spontaneity, and are designed to generate fun and
shoulders 20 times each, and lifts a 2-pound weight 10 interaction. Example: Anthony gets staff assistance to
times for each arm blow up balloons with a balloon pump. He then gets
staff assistance to stand and hold a weighted tennis
racket to play balloon tennis with a friend who is sitting
in a wheelchair
Independence Autonomy
Independence and skill building is usually valued as a The person is able to choose what he or she wants to do
goal of services. Example: Allison can improve her independently, and what he or she gets help with.
skills to walk by herself for short distances. She gets Example: Allison could use her energy to walk
easily tired, and her goal is to walk 50 ft with a gait belt independently, but she chooses to save her energy to
play daily wheelchair basketball and wheelchair t-ball
Participation Engagement
When a person is participating, he or she is doing a task When a person is engaged in an activity, he/she is
because it is expected of him/her, or is linked to a goal invested in it and “caught up” in the moment. The staff
that the treatment team has written. The person can be responds to the individual’s cues and adjusts the activity
observed to be going through the motions of the task and the environment to make sure it is not too difficult
(continued)
102 M.M. Jackman et al.

Table 8.1 (continued)

Individual Support Planning Mindfulness-Based Individual Support Planning
and may be bored, not paying attention, or not (which can cause frustration) and not too easy (which
necessarily enjoying or learning from the experience. can cause boredom). Example: When Jackson starts
Example: Jackson needs to learn to control his hitting feeling the need to hit, his care staff engages him in a
behavior so his goal is to participate at his day program fun boxing game on the Wii, followed by a game to hit
for 30 min without hitting anyone or himself. He usually an inflatable punching target while listening to
sits with a 1:1 care staff and looks out of the window Jackson’s boxing music playlist
Change the services to change people Transform ourselves to benefit people
Given that people with intellectual and developmental By practicing mindfulness and using openhearted
disabilities may have diseases, disabilities, and deficits, awareness and presence, supporters can be with a
they need assistance to change their behaviors and person, rather than do to or for the person. This creates
prevent injury and accident. This is usually achieved by opportunities for meaningful connection and fun, and
prescribing or changing medications and changing the ability to meet a person’s changing needs in each
services, as needed. Numbers are most often used to moment from being in tune with what he or she wants
measure progress

standard ISP formats, some of which can be MBISP. Openly exploring what the team can do to
upward of 40 pages when completed. By con- make the person’s life better is at the heart of the
trast, the MBISP is typically 5–10 pages at most, MBISP planning, and all goals, services, and out-
and each update contains only the current comes relate to areas that rapidly impact the quality
assessments and learning and service plans. The of the person’s life. The underlying assumption is
plans are written in such a manner that it is that the individual can thrive even under life’s
understood at first reading. People with intellec- adverse circumstances, and that the team’s role is to
tual and developmental disabilities who can read develop a transactional pathway by which this can
and/or listen with comprehension should be able be made possible. The time lines are short, with
to navigate through their MBISP with the assis- most short-term goals and learning interventions
tance of their support providers. The plans are being achievable within a week, and outcomes
devoid of jargon and other shorthand communi- measured in terms of quality of life changes that are
cation devices often used by clinicians. meaningful and functional for the person.
The initial MBISP is developed by asking the
person with intellectual and developmental dis-
abilities the foundational question, “If we could do Brief Instructions for Developing
anything to make your life better, what would it the MBISP
be?” or, if the person is unable to make this deci-
sion for any reason, the question is redirected at the Relative to the standard ISP, the MBISP is rela-
individual’s team members, “If we could do any- tively simple to complete and not very
thing to make this person’s life better, what would time-consuming. The typical procedure is for the
it be?” Some team members may see this as a person with intellectual and developmental dis-
challenging question to answer if a person is unable abilities, family members, and treatment team
to communicate verbally, especially if the person (including all caregivers who know the person best
is new to the team. However, this can be a good or those whose who will provide daily supports) to
thing because the team is open to new ideas and has meet and complete the MBISP at one meeting.
not yet formed opinions about what the person can The MBISP is updated as often as necessary,
or cannot do, or what the person likes or doesn't typically when new assessments and consults are
like, which is what often occurs in long-term resi- completed, and when the person meets a specific
dential settings. The answers to this question are objective, intervention, or requires an updated
prioritized as long-term goals and serve as the intervention for the same objective. The person’s
foundation for the development of the self-determined preferences, choices, and quality
8 The Mindfulness-Based Individualized Support Plan 103

Fig. 8.1 Format of the Individual’s MRN#:

mindfulness-based Name:
individualized support plan Date of Birth: Admission Sex: Plan Date:
attachment: treatment team Date:
members’ names, signatures, Plan Initial 7 day 14 day Monthly Annual Special Team
Type: Meeting
and date
Pertinent Social History:

Current Clinical Status:

Current Functional Status:

Prioritized Needs:

ACTIVE TREATMENT GOALS

Long-Term Goal #1:
Current Integrated Assessments:

Short-Term Goals, Objectives and Interventions:

Objective Date Initiated:
1.1
Intervention Target Date:

Objective Date Initiated:

1.2
Intervention Target Date:

Review and Target Date:

Follow-up
Target Date:

Long-Term Goal #2:

Current Integrated Assessments:

Short-Term Goals, Objectives and Interventions:

Objective Date Initiated:
2.1
Intervention Target Date:

Objective Date Initiated:

2.2
Intervention Target Date:

Review and Target Date:

Follow-up
Target Date:

Long-Term Goal #3:

Current Integrated Assessments:

Short-Term Goals, Objectives and Interventions:

Objective Date Initiated:
3.1
Intervention Target Date:

Objective Date Initiated:

3.2
Intervention Target Date:

Review and Target Date:

Follow-up
Target Date:
104 M.M. Jackman et al.

Fig. 8.1 (continued) Long-Term Goal #4:

Current Integrated Assessments:

Short-Term Goals, Objectives and Interventions:

Objective Date Initiated:
4.1
Intervention Target Date:

Objective Date Initiated:

4.2
Intervention Target Date:

Review and Target Date:

Follow-up
Target Date:

Long-Term Goal #5:

Current Integrated Assessments:

Short-Term Goals, Objectives and Interventions:

Objective Date Initiated:
5.1
Intervention Target Date:
:
Objective Date Initiated:
5.2
Intervention Target Date:
:
Review and Target Date:
Follow-up
Target Date:

SERVICE PLANS (add more sections as needed)

1.0 Staff Responsible:
Services

2.0 Staff Responsible:

Services

3.0 Staff Responsible:

of life issues take precedence over those of all team meeting (required by policy for document-
others. ing adverse events). The type of plan is an
interval summary of the person’s progress
through his MBISP.
Information About the Person Pertinent Social History. This section
includes a summary of the following: why the
Identification. This information for this section person was admitted to the facility or group
is obtained from the person’s admission notes or home; where the person lived before current
medical chart. admission; important family circumstances;
Plan Type. The plan types include initial (at preferences, choices, non-negotiables; religious
admission), 7-day (completed on or about the 7th preference; guardianship; and education.
day following admission), 14-day, monthly (with Current Clinical Status. This section includes
the 3rd monthly being a quarterly), annual (with a summary of the following: current medical
the 12th monthly being an annual), and special diagnoses; how medical conditions are being
8 The Mindfulness-Based Individualized Support Plan 105

Fig. 8.1 (continued) Services

4.0 Staff Responsible:

Services

5.0 Staff Responsible:

Services

Rights Restriction and Restoration

Rights Restriction and Restoration: Date Date
Restricted Restored

Review and Recommendations: Target Date:

Team Leader Monthly Update

Team Meeting Update

Individual’s Signature _______________________________________ Date

________________

treated; nutritional status; physical health status; self-regulation and coping skills; adaptive
therapies; all prescribed medications and treat- equipment; procedures and plans; strengths,
ments; recent laboratories/diagnostic results; current level of engagement and protective fac-
mental health status—psychiatric and psycho- tors; and quality of life preferences and choices.
logical issues; level of supervision; and consult. Areas from this list that are determined to be
Each medical condition or disorder in this list is important to the person’s quality of life are linked
linked to a service plan in the Service Plan sec- to the goals in the active treatment goals section
tion of the MBISP. of the MBISP.
Current Functional Status. This section
includes a summary of the following: What the
person is able to do functionally stated in Active Treatment Goals
behavioral terms; required assistance for
self-care; special eating and drinking considera- Active treatment goals enable the person to
tions or modifications; communication ability; maximize self-determination, preferences, and
106 M.M. Jackman et al.

choice to enhance his or her quality of life. These assessment by an occupational therapist, speech
goals are functional, meaningful to the individ- therapist, physician, and dietitian. It should be
ual, and designed to enhance independent func- understood that a different mix of assessments
tioning, improve autonomy, and increase might be needed as the person makes progress on
opportunities for new experiences. The goal of each short-term goal. Recommendations include
active treatment is not to make the person with discipline-specific responsibilities for further
intellectual and developmental disabilities simply assessments and target date(s) for the proposed
fit better in the current residential setting, but to assessments. The assessments integrated in this
afford the person the same opportunities for section pertain only to the long-term quality of
self-discovery, social connection, and for expe- life goal listed above it. Discipline-specific
riencing life available to a person without intel- monthly assessments that are generic and do
lectual and developmental disabilities. The goals not pertain to the specific long-term goal may be
are conducive to physical and social integration filed in the person’s chart, but are not included in
in the person’s community or, if the person is in a his or her MBISP.
congregate care facility, the proposed community This section also includes information from
upon leaving. The active treatment goals are all pertinent team members on how the person is
linked to the person’s current functional status doing in each specific long-term goal area in
and are developed to make the person’s life terms of motivation, level of supports needed,
better now, within a few days or weeks, rather ability, and engagement. This is different from
than months later. the current functional status because that section
Long-Term Goals. Each long-term goal is provides a global picture of the individual, and
based on the person’s self-determined quality of this section addresses a specific functional area in
life needs, preferences, and choices‚ and begins some detail. Assessment data can come from
with the answer to the initial question of how to observations, practical assessments, formal clin-
make the person’s quality of life better now. ical evaluations, tests or consultations from out-
A long-term goal may take some time to achieve, side professionals, caregiver data collection
and it is written in terms of what the person will sheets, and video observations.
do that can support more enjoyment or engage- Short-Term Objectives and Interventions.
ment in life. Another name for a long-term goal The short-term goals telescope into the long-term
is a quality of life goal. goal. That is, the short-term goals collectively
Current integrated assessments: In the con- form the long-term goal. Each short-term goal
text of each long-term goal, the treatment team as specifies the objective(s) and interventions. The
a group identifies and undertakes pertinent plan includes the date initiated, target date, and
cross-disciplinary assessments that inform the discipline responsible. The objectives and inter-
development of short-term goals. These assess- ventions are written in plain language that can be
ments are dynamic and repeated as the person understood by everyone, including parents,
progresses on each short-term goal, which further guardians, and care staff upon first reading. The
informs the changes that need to be made to interventions are stated in flexible terms—going
short-term goals. These assessments are inte- with the flow of the individual—as opposed to a
grated in the sense that each discipline builds on rigid schedule that does not take into account the
the findings of other pertinent disciplines, and changes in the person’s behavioral, social emo-
findings are all specific to a functional area of tional, and medical issues. The interventions state
engagement that is meaningful to the individual. how caregivers and clinicians will support the
For example, if a person with a dysphagia diag- person to achieve the short-term goals as effi-
nosis, who requires a modified food texture for ciently and effectively as possible.
safety, wants to try to learn to safely eat a The interventions linked to each objective are
favorite food again, he may have an integrated developed as instructions for staff members. These
8 The Mindfulness-Based Individualized Support Plan 107

instructions are sometimes called mindful (QIDP) summarizes the participation of the per-
engagement support (MES) worksheets and are son with intellectual and developmental disabil-
readily available to caregivers in the person’s res- ities, family members, guardians, and significant
idential, work, and leisure settings. The MES others in the MBISP reviews and updates. The
worksheets help the caregivers in implementing summary also includes recommendations for
each of the interventions. Implementing the inter- revisions in the MBISP, monthly contact with
ventions is a matter of supporting and mindfully family and guardians, change in transition status,
guiding the person with intellectual and develop- and other significant events (e.g., trips to com-
mental disabilities, as opposed to rigidly teaching munity, risk thresholds, incidents, change in
the person to achieve the objective. Interventions work status, or residential setting).
can be programs, supports, or opportunities that
help the person to learn or practice skills along a
pathway to meeting personal quality of life goals. Team Meeting Update

This section is a summary of the current team

Service Plans meeting.

Service plans are linked to the current clinical

status (and, occasionally, the current functional Supporting People with Intellectual
status) and provide a list of all services that clini- and Developmental Disabilities
cians and direct care staff will provide to the person to Mindfully Engage with Their
with intellectual and developmental disabilities. MBISP
Each medical or health condition or diagnosis that
affects the person’s health, safety, or quality of life Individuals with intellectual and developmental
should have a matching service plan listed in this disabilities often need support with daily activi-
section. A service plan is a guide to the kinds of ties. However, if a person has limited mobility or
interventions, medications, or services a person ability to communicate, his or her options may
needs to maintain or improve health and wellness. also be somewhat restricted. It is more likely for
Some disciplines, such as nursing and therapies, engagement to occur if a person is doing a task
have protocols that can be used to guide thera- that is challenging enough to be interesting, but
peutic services for each person that are based on not too difficult to be frustrating. Similarly, a
evidence-based standards of practice. The treat- person is likely to engage in an activity if it is
ment team may refer to these protocols in the motivating, pleasurable, functional, and
service plans, without further elaboration. meaningful.

Rights Restoration How to CREATE Engagement

Opportunities
Typically, the individual’s MBISP should not
include any restriction of rights. If there is a Caregivers can support people with intellectual
restriction, it is stated in this section, together with and developmental disabilities to enhance the
a plan to restore the right as rapidly as possible. quality of their lives by restructuring the envi-
ronments and contexts in which they engage in
life activities. The acronym CREATE provides a
Team Leader Monthly Update framework for developing the necessary supports
in terms of service provision and physical envi-
In this section, the team leader, typically a ronment that enhance engagement opportunities
Qualified Intellectual Disabilities Professional for people with intellectual and developmental
108 M.M. Jackman et al.

disabilities. The CREATE domains are various immediately, this is a reaction. If we look both
aspects of engagement that collectively form a ways to make sure no people or cars are coming
holistic picture of potential for meaningful before we go, then this is a response. We may
quality of life experiences. Staff and caregivers take an extra second to look before going if we
can make changes to each of these factors as have been in an accident due to someone running
needed to help people to be more present and a red light in the past, this is the remembering
invested in daily activities. part. Regret prevention is about making a
C: Choice, Control, and Curiosity. Choice response that involves thinking about the con-
and control empower a person to make decisions sequences of our actions before responding—it
about the kinds of activities to engage in prevents us from regretting having made a
throughout the day. In some settings, such as in mindless response. For example, if a person is
some residential or group home settings, choice trying to eat independently and accidently spla-
and control are often limited, especially when a shes some food all over our clothes, a reaction
person has difficulty in communicating clearly. It may include an upset tone that could hurt the
is important to continually update preference person’s feelings (e.g., “You made a mess!”), but
assessments to help figure out what the person a response would require a pause to contemplate
likes (e.g., foods, places, comfort items, activi- a positive response and offer words that will not
ties, household chores, types of music, bever- make the person feel badly (e.g., “That was a
ages, smells). A preference assessment involves good try. Let me get a washcloth to clean us
offering the person different options and docu- up”). Reinforcement is offering praise and
menting his or her response to each option, so attention for a response from the person rather
that these choices can be used to help support than intervening negatively when something
engagement (Samaha et al., 2016). It is also goes wrong (Williams, Lee, & Grossett, 2016).
important to remember that a person’s prefer- Reinforcement of effort and attitude over out-
ences might change over time, and the person comes can be beneficial for people who struggle
may like something now and not like it little with task performance.
later, or conversely, begin to take interest in E: Environment. This factor involves an
something that was not previously a source of understanding of how the environment can sup-
enjoyment. Another important factor is curiosity. port engagement and learning (Staddon, 2016). It
Research shows that if someone is curious about can be difficult for people to be engaged in an
something, she is more likely to learn from the activity if the environment is uncomfortable. For
experience and remember it (Kidd & Hayden, example, if a person with intellectual and
2015). Offering a person something new or pro- developmental disabilities has a goal to get
viding an activity in a new setting can help to get dressed independently so that he can have more
them curious and motivated, which can lead to a privacy, he may have problems dressing if the
more engaging experience. room is too cold after his bath, or if his caregiver
R: Response, Regret Prevention, and is rushing him. It is important to notice how the
Reinforcement. Supporting a person’s needs person is responding to the physical environment
requires paying attention and being aware of the (e.g., he seems distracted by bright lights and
person and the environment so that we can becomes anxious if a peer is yelling) and the
respond rather than react. Reacting is reflexive social environment (e.g., he feels a sense of
and usually happens when we are not paying connection with peers and seems to trust his
attention or being aware. Responding is more caregivers), so that we can make changes as
careful and occurs when we are aware of what is needed to support him to have more success,
going on around us not only right now, but also sense of safety, enjoyment with the activity.
with consideration of things that have happened Finally, we should also consider the temporal
in the past. For example, if we are sitting at a red environment because the time of day can affect
light and the light turns green and we go how a person engages in an activity (e.g., a
8 The Mindfulness-Based Individualized Support Plan 109

person may like to have an afternoon snack, but T: Task Demands. People with intellectual
not a morning snack because he is hungry later in and developmental disabilities may need physical
the day following his afternoon walk). assistance to complete tasks that are meaningful,
A: Awareness, Attention, and Attitude. and helping them to have more independence can
Awareness is the process of noticing what is give them more control when engaged in func-
happening inside and around us, and attention is tional activities (Lancioni & Singh, 2014). If we
the process of focusing on what is in front of us, want to help a person to be more independent
one thing at a time. For example, when our with an activity, we can teach the person new
attention is directed at an interesting movie and skills, or we can change the task itself to make it
we are snacking on popcorn at the same time, we easier. For example, if person is not able to use
might not be fully aware of eating a large tub of two hands at the same time, he may benefit from
popcorn, and we may not enjoy it because our special equipment such as a rocker knife, or a
attention was elsewhere. Mindfulness involves a cutting board with a special nail in it to hold the
balance of awareness and attention; for example‚ food in place. Being aware of the person’s
if a person is focusing her attention on a beautiful strengths and abilities can help us to come up
flower, but not aware that she has stepped on an with new ways to change a task, the task
ant pile‚ she may experience pain as a result of demand, or use assistive technology that will
limited mindful awareness. The best way we can help the person to succeed.
support a person to be engaged and have a better E: Energy. When supporting someone to
quality of life experience is to give the person our engage in an activity, it is important to remember
full attention, and be aware of what the person is that different activities require different levels of
doing, as well as his or her needs and wants. This energy. If a person is tired, she may want to
lets the person know that we are there to meet his engage in a task that does not take a lot of energy
or her needs and that we care about what is (e.g., listening to music), but if she is moving and
happening. Awareness involves the process of excited, she may want to engage in a task that
noticing what is going on so that we can ensure requires a lot of energy (e.g., dancing or playing
that the environment is safe and best able to drums). Also, different types of activities can be
support the person to have an engagement used to help wake people up (e.g., washing face
experience. For example, if we are working with cool cloth, smelling peppermint), or calm
outside with a person to water plants, and we them down (e.g., low lighting, weighted blanket).
notice that a bee buzzing close to him is both- Noticing a person’s energy level can help us to
ering him (who also happens to be allergic to make decisions about what kind of activities to
bees), we would be able to help the person provide and when to provide them, or save them
change locations for the activity, or go inside to for another time. For example, if a person usually
take a break. Balancing our presence and atten- exercises in the afternoon, but was sedated at the
tion on the person with awareness of what is dentist that morning, something easy such as
going on around us can be really difficult, and watching the birds outside or having a hand
this is why we practice mindfulness meditation to massage would be a better choice than active
help us with attention and awareness (Hwang & exercise to promote an engagement experience.
Singh, 2016). Finally, having a compassionate
and nonjudgmental attitude, and being open to
anything that can happen, is a key part of really How to Develop CREATE Engagement
supporting the person. It also helps us to Plans
remember why we are working with the person,
which is not to meet written goals or to slavishly When the treatment team identifies a quality of
follow a treatment plan, but to make that person’s life goal and objectives for someone, it also
life better in the here and now. develops related interventions that support
110 M.M. Jackman et al.

Fig. 8.2 Format of the Name: Home: Activity Week:

caregiver mindful Short-term Goal and Objective:
engagement support
worksheet What Activity:
Why:
Where
When:
How:
Prompts and assistance
How:
Strategies to promote
engagement
How:
Mindful response and
reinforcement

providers can use to support the person to attain When. This section lists the time(s) of day or
these goals and objectives. In the MBISP, we night that the activity and support will occur, based
translate the interventions into mindful engage- on the person’s preferences and rhythm of life.
ment support (MES) worksheets that provide Where. This section lists the location(s) where
detailed guidance and individualized suggestions the activity and support will take place. It may
to support providers in how they might best also include a description of where and how the
support a person with intellectual and develop- person might be best supported (e.g., wheelchair,
mental disabilities to be more engaged in the armchair, near a window, feet elevated with pil-
activities that would enhance a quality of life low under knees)‚ and special equipment or
experience. These worksheets include details positioning considerations to enhance safety
about the “what, why, when, where, and how” of and/or comfort.
engagement and are written with input from all How: Prompts and assistance. This section
treatment team members, especially the people includes suggestions for the type of prompts and
who support the person with intellectual and assistance that support providers will provide to
developmental disabilities on a daily basis. These best support the person. A 5-step prompting
worksheets are guides, not mandates, and support procedure is often used:
providers are encouraged to make changes in
terms of the degree of support needed by the 1. Gently make a request (e.g., “Vida, press this
person. Indeed, support providers are encouraged button to turn on the iPad”).
to make changes to the worksheets as the person 2. Pause before you provide the first prompt
makes progress in the chosen activity or indicates (i.e., give her time to show whether she can
changes in preference and/or motivation. do it independently).
Figure 8.2 presents a template of a MES 3. Give a general prompt (e.g., ask, “Vida, what
worksheet. The five component sections include: are you supposed to do next?”).
What Activity. This section lists the inter- 4. Give a specific prompt (e.g., model it—
vention linked to the person’s short-term goal physical/gestural or verbal prompt). Repeat #4.
and objectives in the MBISP. Each MES work- 5. Give physical guidance (i.e., least-to-most—
sheet covers one intervention from the MBISP. If she knows how to do it OR most-to-least—
Why. This section informs the support provi- if he does not know how to do it).
der why this activity is meaningful and func-
tional for the person being supported, and how it Support providers should begin with #1 and
will enhance the quality of his or her life in a work their way down to the step at which the
specific area of engagement. person can perform the activity.
8 The Mindfulness-Based Individualized Support Plan 111

How: Strategies to promote engagement. This enables them to engage in self-determined action,
section provides helpful hints for how support identify preferences, and make choices that
providers might use the person’s motivation, enrich their lives with quality and meaning. The
preferences, choices, and strengths to encourage mindfulness training components enable staff to
him or her to be engaged. The information in this implement the plans with wisdom, loving kind-
section gives support providers ideas and sug- ness, and compassion. Given that some people
gestions for making the activity more enjoyable, with intellectual and developmental disabilities
meaningful, and personalized, or for making the may engage in challenging behaviors, caregivers’
person more comfortable or successful. support skills can be buttressed with additional
How: Mindful response and reinforcement. training in mindfulness-based positive behavior
This section includes strategies for how to support to preempt the use of aversive or nega-
mindfully respond and reinforce the person’s tive consequences (Singh et al., 2016d). In
behaviors. The strategies are specific and indi- essence, the MBISP translates Dworkin’s (1994)
vidualized (e.g., physical reinforcement such as a two “interests” that make life worth living: ex-
“high five” that is highly preferred by the person periential interests—engaging in activities that
rather than the generic verbal “good job”). one finds pleasurable and exciting, and critical
interests—engaging in activities that give mean-
ing to our lives.
Conclusion
Acknowledgements We thank service provider agencies
and thousands of caregivers, supervisors, and executives
The essence of an individualized support plan is who enabled us to develop and test the MBISP in many
not to prescribe a set of mandated tasks for group homes and congregate care settings across several
support providers to execute, but to develop a states. We also acknowledge with much gratitude our
pathway that caregivers can use as a guide to profound thanks to our many collaborators and enablers,
especially Larry L. Latham, Theresa M. Courtney, Tabi-
support a person to thrive regardless of physical, tha Burkhart, Warren Milteer, Connie Slaughter Van
mental, medical, or psychological circumstances Bibber, Amy Dennison, Jerry Mallett, Lori Key, Priscilla
(Singh, Lancioni, Harris, & Winton, 2016a). For Jimenez, Jodi Wilson‚ Brandy Chaneb‚ Hannah Burdette,
people with intellectual and developmental dis- and Paul Clark.
abilities, these plans should enable a life worth
living, with a focus on maximizing the person’s
inherent potential, and not degenerate into insti- References
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Author Biographies his doctorate in clinical psychology from Louisiana State

Monica Moore Jackman, OTD, MHS, OTR/L is an occu- University, and completed an APA-approved internship at the
pational therapist, consultant, continuing education instructor, Johns Hopkins School of Medicine and Hospital and the
and owner of Little Lotus Therapy. She has written and Kennedy Krieger Institute. He is Clinical Professor of Psy-
developed mindfulness-based clinical models and curricula chology and Behavioral Sciences at the Kentucky School of
for adults and children, and provided training to caregivers Medicine and Hospital. Prior to this he worked with children
and teachers on implementation. She earned a master’s in and adults across settings including the Johns Hopkins
health science from the University of Florida and a doctorate Hospital and the Kennedy Krieger Institute, Medical College
in occupational therapy from Chatham University. She enjoys of Virginia Hospitals, Children’s Hospital in Richmond,
engaging in research that seeks to meet a clinical need and Virginia, Maryland School of Medicine and Hospital, Mt.
identifies ways to help others to engage in and experience life Washington Children’s Hospital, and the St. Mary’s Chil-
more fully. dren’s Hospital in Bayside, New York. A published author,
his research and clinical interests include assessment and
Carrie L. McPherson, M.S., CCC-SLP serves as a private treatment of individuals with developmental disabilities,
therapy and research consultant for state and independent feeding disorders, Prader-Willi syndrome, self-injurious
agencies. She owns a private therapy company, employing behaviors, autism, and program evaluation.
speech-language pathologists and psychological profession-
als. Carrie has lectured for Murray State University, as well as Nirbhay N. Singh, Ph.D., BCBA-D is Clinical Professor of
provided professional supervision for graduate clinicians at Psychiatry and Health Behavior at the Medical College of
the university clinic within the College of Education and Georgia, Augusta University, Augusta, GA and CEO of
Human Services. Carrie earned Bachelor of Science and MacTavish Behavioral Health, in Raleigh, NC. His interests
Master of Science degrees from Western Kentucky Univer- include mindfulness, behavioral and psychopharmacological
sity, and is now a Ph.D. in Health Science candidate at Nova treatments of individuals with diverse abilities, assistive
Southeastern University. She has served individuals ranging technology, and mental health delivery systems. He is the
in age from birth to elderly, with varying disabilities. Her Editor-in-Chief of three journals: Journal of Child and Family
primary research interests involve mindfulness and the Studies, Mindfulness, and Advances in Neurodevelopmental
application of such to interventions to programs for child Disorders, and Editor of three book series: Mindfulness in
development, support for individuals with intellectual dis- Behavioral Health, Evidence-based Practice in Behavioral
abilities, staff and caregivers, and parents. Health, and Children and Families.

Ramasamy Manikam, Ph.D., BCBA is a licensed Clinical

Psychologist in the State of Maryland. Dr. Manikam obtained
 Translating the Quality of Life
Concept into Practice 9
Robert L. Schalock, Miguel A. Verdugo
and Laura E. Gomez

outcomes for persons with a disability and those

Introduction and Overview
of persons without a disability.
Overcoming these challenges and furthering
In a recent chapter discussing the concept of
the incorporation of the QOL concept into
quality of life (QOL) and positive psychology
disability-related policies and practices require
(Schalock & Verdugo, 2013), we suggested that
that we continue to understand and address the
the QOL concept has had five significant effects
factors that influence the translation of the QOL
on the field of intellectual and closely related
concept into practice. Our hypothesis is that these
developmental disabilities. These are that the
factors are the same as—or very similar to—
concept fosters the provision of individualized
those factors that influence the translation of
supports, furthers the development of
positive psychology into practice.
evidence-based practices, encourages the evalu-
Quality of life-related concepts and the
ation of personal outcomes, provides a quality
themes found in positive psychology are closely
framework for continuous quality improvement,
related, since both influence how people think
and is a catalyst for organization and
and act. Their parallel nature is shown in
system-level transformation. In the conclusion of
Table 9.1 that aligns the components of a lan-
the chapter, we identified the significant chal-
guage of thought and action (Pinker, 2005), with
lenges that researchers, policy makers, and
core positive psychology themes (Hart & Sasso,
practitioners need to address regarding the
2011), and QOL-related actions (Reinders &
long-term impact of the QOL concept on policies
Schalock, 2014; Schalock et al., 2016).
and practices related to persons with intellectual
In this chapter, we discuss six factors that
and developmental disabilities as well as other
significantly influence not only the translation of
diagnostic groups. These challenges relate to
the QOL concept into practice but also by
whether the concept and its application enhance
inference, the translation of positive psychology
human functioning, inclusion, and equity and
into practice. These factors are a validated QOL
reduce the discrepancy between valued personal
conceptual model, QOL enhancement strategies,
application fidelity, research, evidence-based
practices, and a systematic approach to translat-
R.L. Schalock (&)
ing evidence into practice.
Hastings College, PO Box 285, Chewelah 99109,
WA, USA Throughout the chapter, QOL is defined as a
e-mail: [email protected] multidimensional phenomenon composed of core
M.A. Verdugo domains that constitute personal well-being.
University of Salamanca, Salamanca, Spain Corollaries stemming from this definition are that
L.E. Gomez (a) these domains, which are important to all
University of Oviedo, Oviedo, Spain people, reflect the holistic and individualistic

© Springer International Publishing AG 2017 115

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_9
116 R.L. Schalock et al.

Table 9.1 Parallel nature of the concepts of positive psychology and quality of life
Components of a Positive psychology themes Quality of life-related concepts
language of thought and
action
A cast of basic concepts Virtues, character strengths, positive Equity inclusion, empowerment,
personality traits, abilities, talents self-determination, rights (legal and human)
A set of relationships The good life or the life worth living Interactions, social networks, community
participation, valued roles, positive
experiences
A system of spatial Thriving and flourishing, resilience Inclusion, active participation, being in and of
concepts or adaptive functioning the community
A family of causal Developmental processes, Autonomy/personal control, choices,
relations actualization of potential self-advocacy
The concept of a goal Happiness, emotional well-being, Personal outcomes, inclusive environments,
fulfillment, quality of life possessions

nature of a life of quality, although their relative Quality of Life Domains

importance will vary across age, gender, and
cultures; (b) one’s quality of life is the product of In our conceptual model, quality of life is com-
personal characteristics and environmental fac- posed of eight core domains that were initially
tors and is enhanced through quality enhance- synthesized and validated through an extensive
ment strategies; (c) personal growth does not review of the international quality of life litera-
only pertain to realized outcomes but also to the ture across the areas of intellectual and devel-
processes involved, including what the person opmental disabilities, special education, behavior
contributes to bringing about change, and what and mental health, and aging (Schalock & Ver-
person-centered supports and opportunities dugo, 2002). These core domains are personal
facilitate a life of quality; (d) no one is excluded development, self-determination, interpersonal
on the basis of disability from the quality of life relations, social inclusion, rights, emotional
enhancement process; and (e) indicators of QOL well-being, physical well-being, and material
domains can be assessed in reliable and valid well-being. Subsequent cross-cultural validation
ways (Brown et al., 2013; Mansell & of the etic (i.e., universal) properties of these
Beadle-Brown, 2012; Nussbaum, 2009, 2011; eight domains has been reported by Jenaro et al.
Reinders & Schalock, 2014; Schalock & Ver- (2005), Schalock et al. (2005), and Wang et al.
dugo, 2008; Schalock et al., 2016; Sen, 1999; (2010).
Verdugo et al., 2005). In addition to confirming the factor structure
of the eight, first-order domains listed above,
research has also determined the hierarchical
QOL Conceptual Model nature of the quality of life concept. Based on
both cross-cultural data (Wang et al., 2010) and
Translating the QOL concept into practice starts data obtained from Spain (Gomez et al., 2011),
with a validated conceptual model that is used three higher order factors have been identified.
to explain the QOL concept, integrate current These are independence (composed of personal
work in the field, and provide the basis for development and self-determination), social
application. Our work to date incorporates a participation (composed of interpersonal rela-
conceptual model of individual quality of life tions, social inclusion, and rights), and well-be-
based on QOL domains and moderator and ing (composed of emotional, physical, and
mediator variables. material well-being).
9 Translating the Quality of Life Concept into Practice 117

Other conceptual models of individual quality There has been initial work in the field of
of life can be found in the work of Brown et al., intellectual and developmental disabilities iden-
(2013), Cummins (2005), Gardner and Carran tifying those variables that potentially act as
(2005), Felce and Perry (1995), Petry et al. either ‘quality of life moderators’ or ‘quality of
(2005, 2009), and Renwick et al. (2000). Anal- life mediators.’ These are summarized in
ogous models of family quality of life can be Table 9.2. The listing in Table 9.2 is based on
found in the work of Chiu et al. (2013) and Zuna the work of Chiu et al. (2013), Cummins (2005),
et al. (2010). Common to these models is the Gomez et al., (in preparation), Reinders and
inclusion of quality of life domains that are the Schalock (2014), and Schalock et al., (2007,
factors composing personal or family well-being, 2010).
and quality indicators that are QOL-related per-
ceptions, behaviors, and conditions that give an
indication of a person’s or family’s well-being. Quality of Life Enhancement
The measurement of quality of life is based on Strategies
assessing the perceived status (based on
self-report or report of others) of the quality Implementing QOL enhancement strategies is an
indicators. essential step in translating the QOL concept into
practice. As summarized in Table 9.3, enhance-
ment strategies should be aligned with quality of
Moderator and Mediator Variables life principles and applied at the micro-, meso-,
or macrosystem level. Material presented in
Translating the QOL concept into practice: (a) is Table 9.3 is based on the published work of
based on an ecological model of disability that Barron and Kenny (1986), Brown et al. (2013),
focuses on person–environmental interaction, the Claes et al. (2012), Gardner and Carran (2005),
congruence between personal competence and Morin et al. (2013), Reinders and Schalock
environmental demands, and the use of QOL (2014), Schalock and Verdugo (2012, 2013a, b,
enhancement strategies that bridge the gap between 2014), Schalock et al. (2007, 2011), and
what is and what can be; and (b) requires an under- Thompson et al. (2014).
standing of two classes of variables that influence
QOL domains, indicators, and QOL-related out-
comes: moderator and mediator variables. Application Fidelity

• A moderator variable, which can be contin- The effectiveness of the quality of life enhance-
uous or categorical, alters the relation ment strategies listed in Table 9.3 is influenced
between two variables and thus modifies the significantly by application fidelity. Such fidelity
form or strength of the relation. A moderator involves the following (Bigby et al., 2014;
effect is an interaction in which the effect of Hogue & Dauber, 2013; Reinders & Schalock,
one variable is dependent on the level of the 2014): the quality or extent to which the QOL
other (Farmer, 2012; Frazier et al., 2004; enhancement strategy is delivered within the
McKinnon, 2008). organization’s policies and practices (i.e.,
• A mediator variable, which is generally con- adherence), the quality or skill of delivery (i.e.,
tinuous, influences the relation between an competence), and the degree to which the QOL
independent variable and outcome and exhi- enhancement strategy focuses on quality of life
bits indirect causation, connection, or rela- and not quality of care (i.e., differentiation). In
tion. A mediator effect is created when a addition, application fidelity incorporates best
factor intervenes between the independent practices in the field. As discussed by Reinders
and outcome variable (Farmer, 2012; Frazier and Schalock (2014), Schalock and Luckasson
et al., 2004; McKinnon, 2008). (2014), and Schalock and Verdugo (2014), these
118 R.L. Schalock et al.

Table 9.2 Quality of life moderator and mediator classes and associated variables
QOL Specific variables studied to date
moderator/mediator
class
QOL moderators
– Personal – Gender, race, intellectual functioning, adaptive behavior, social economic status
demographics
– Organization culture – Level of personal involvement of the client, level of personal growth opportunities
– Family-unit factors – Family income, size of family, family geographical location, religious preference,
family structure
QOL mediators
– Personal status – Residential platform, employment status, health status, and level of self-determination
and subjective well-being
– Provider system – Services, individualized supports
– Community factors – Normative expectations, attitudes, media impact

Table 9.3 Quality enhance strategies

Systems level QOL-related Exemplary QOL strategies
principles
Individual Empowerment – Decision making, choice making, risk taking, goal setting,
(microsystem) Skill development self-advocacy, self-management
Involvement – Functional training and use of technology to enhance cognitive, social,
and practical skills
– Participation, inclusion, knowledge sharing
Organization Opportunity – Integrated employment, inclusive education, community-based, less
(mesosystem) development restrictive living options, community integration activities,
Safe and secure transportation, social networks
environments – Environments characterized by safety, security, and personal control
Supports – Aligning individualized supports to personal goals and assessed
alignment support needs
Society Accessibility – Ensuring human rights (e.g., empowerment and inclusion) and legal
(macrosystem) Attitudes rights (e.g., citizenship, due process)
Environmental – Positive interactions
enrichment – Nutrition, cleaner environments, reduced abuse and neglect, safer
environments, adequate housing and income

are the following: (a) employing support teams accommodations, building on personal goals and
that include service/support recipients and their assets, and professional services; and (d) em-
family, direct support staff who are involved in ploying user-friendly support plan that provides
the provision individualized supports, relevant delineate support provision and outcomes.
professionals, and a support coordinator; (b) de-
veloping QOL-focused individual support plans
around the individual’s personal goals, assets, Research
and assessed support needs; (c) implementing a
system of supports that encompasses an array of Research should incorporate an ecological
operationally defined support strategies, includ- framework, be sensitive to application fidelity, and
ing natural supports, cognitive supports, assistive be guided by the three foundational elements
technology, information technology, skills discussed in the following section on estab-
and knowledge development, environmental lishing evidence-based practices. In addition,
9 Translating the Quality of Life Concept into Practice 119

QOL-related research requires clear operational of measurement pluralism that involves

definitions of both the independent variable (i.e., self-report and report by other significant per-
QOL enhancement strategies that can act as sons, and the involvement of persons with dis-
moderators or mediators) and the dependent vari- abilities in the design and implementation of the
able (i.e., assessed personal outcomes). assessment instrument and the assessment pro-
cess. QOL-related research should also reflect a
number of best practice test development and
Independent Variable: QOL assessment practices. As discussed by Gomez
Enhancement Strategies et al. (2012) and Gomez and Verdugo (2017),
these involve the following: (a) a well-
The QOL enhancement strategies listed in formulated and validated conceptual model,
Table 9.3 are best practices that stem from (b) culturally sensitive indicators, (c) a Likert
research-based knowledge, professional values, scale scoring metric, (d) acceptable psychometric
professional standards, and empirically based properties, (e) administration by a qualified
clinical judgment. These (and analogous) strate- interviewer, and (f) the use of self-report and
gies can be used to generate research hypotheses report of others’ versions that include the same
such as: indicator and scoring metric. The use of com-
parable versions (i.e., self-report and report of
• At the individual (microsystem) level: QOL others) allows researchers to address long-
outcomes are enhanced through decision standing questions about response persevera-
making, choice making, goal setting, tion, concordance rates among respondents, and
self-advocacy, self-management, use of tech- the relation between subjective and objective
nology, participation, and social networks. data.
• At the organization (mesosystem) level: QOL Research involving the assessment of personal
outcomes are enhanced through integrated outcome determines whether or not there is a
employment, inclusive education, significant relation between a specific QOL
community-based living and participation, enhancement strategy and a measured
transportation, safe and secure environments, QOL-related outcome. Thus, outcome evaluation
personal control, and individualized support is an essential step in establishing evidence-based
strategies targeted to personal goals and practices.
assessed support needs.
• At the societal (macrosystem) level: QOL
outcomes are enhanced through ensuring Establishing Evidence-Based
human and legal rights, developing and Practices
experiencing positive community attitudes,
and maximizing environmental enrichment Despite the widespread advocacy for
related to health, safety, and social economic evidence-based practices (EBPs) across disci-
status. plines and human service areas (see, e.g.,
Archibald, 2015; Claes, 2015; Means et al.,
2015; Mihalic & Elliott, 2015; Schalock et al.,
2011), there are three important foundational
Dependent Variable: Personal elements that need to be addressed in establish-
Outcomes ing best practices as evidence-based practices:
(a) clear operational definitions of key terms,
The current approach to the measurement of (b) what evidence-gathering strategy should be
QOL-related personal outcomes is characterized used that best addresses the question(s) being
by its multidimensional nature, the coexistence asked, and (c) what evaluation standards should
of universal and culture-bound indicators, the use be employed to interpret the significance of the
120 R.L. Schalock et al.

evidence (Schalock, Gomez, Verdugo, & Claes, These operational definitions encompass the
2015). factors that play a role in decision making
including scientific evidence, cultural appropri-
ateness, the multidimensional and individual
Operational Definitions of Key Terms nature of quality of life, and concerns and
emphasis on equity and human rights (Archibald,
The key terms involved in establishing EBPs are 2015; Navas et al., 2012; Schalock et al., 2011;
evidence, practices, outcomes, and Verdugo et al., 2012; United Nations, 2006).
evidence-based practices. They also reflect the potential use of EBPs to
inform clinical decisions about intervention/
• Evidence: quantitative or qualitative results support strategies; managerial decisions about
that furnish proof of the significant relation value-based policies, resource utilization pat-
(causal or correlational) between specific terns, and organization structure, and policy and
enhancement strategies and measured out- funding decisions and mandates (Donaldson
comes. Current best evidence is information et al., 2009; Means et al., 2015; Mihalic &
obtained from credible sources that used Elliott, 2015; Schalock & Verdugo, 2012).
reliable and valid methods and/or information
based on a clearly articulated and empirically
supported theory or rationale. Evidence-Gathering Strategies
• Practices and best practices: interventions,
services, strategies, supports, and policies that Evidence-gathering strategies can be organized
focus on enhancing human functioning and into two broad measurement perspectives with
personal well-being. Best practices can come specific research designs associated with each:
from research-based knowledge, professional quantitative and qualitative. An overview of
values and standards, and empirically based these designs and techniques based on the for-
clinical judgment. Best practices can also be mulation of Neutens and Robinson (2010) and
derived from a rigorous process of peer Norwood (2010) is presented in Table 9.4. The
review and evaluation indicating effectiveness specific evidence-gathering strategy used to
in improving outcomes. establish EBPs will depend on the practice or
• Outcomes: specific indicators of the benefits policy being evaluated, the limitations imposed
derived by program recipients that are the by statutory/regulatory bodies or professional
result of the practice(s) employed. These standards and ethics, the constituents involved in
indicators are assessed via quantitative or the evidence-gathering activities, and the avail-
qualitative methodologies and focus on able level of expertise. Additional information
human functioning, social participation, regarding evidence-gathering strategies can be
and/or personal well-being. Outcome indica- found in Burke (2001), Claes et al. (2015),
tors need to be: (a) based on a clearly artic- Creswell et al. (2007), Grimshaw et al. (2000),
ulated and validated conceptual and Schalock and Verdugo (2012), and Schalock
measurement model, (b) assessed reliably, et al. (2011).
and (c) have utility in that they are used to
demonstrate effectiveness of the aforemen-
tioned practices. Evaluation Standards
• Evidence-based practices: practices that are
based on current best evidence of a significant The evidence obtained via an evidence-gathering
relation between a specific practice and strategy is used to evaluate the hypothesis that a
measured personal outcome(s) and that are particular practice is either effective or ineffec-
used as the basis for clinical, managerial, and tive. As discussed by Biesta (2010) and Bouffard
policy decisions. and Reid (2012), and Schalock et al. (2015), it is
9 Translating the Quality of Life Concept into Practice 121

important to remember that evidence is useful to qualitative designs, the quality of evidence is
only within the context of the question(s) being evaluated based on its validity, generalizability,
asked, what is best for whom, and what is best and objectivity (Daly et al., 2007; Lincoln &
for what. In addition, evidence is also evaluated Guba, 1985; Gugiu, 2015).
on the basis of the perspective taken. In that Robustness of evidence. Robustness refers to
regard, there are three perspectives on evidence: the magnitude of the observed effect. In quanti-
the empirical-analytical, the phenomenological- tative research designs, the magnitude is deter-
existential, and the post-structural (Broekaert mined from probability statements, the percent of
et al., 2010; Claes et al. 2015; Schalock et al., variance explained in the dependent variable by
2011; Shogren et al., 2015). These three per- variation in the independent variable, and/or the
spectives lead to different approaches to evalu- statistically derived effect size (Daly et al., 2007;
ating evidence, the outcome domains selected, Given, 2006). In qualitative research designs, the
and the evaluation standards used. robustness of evidence is determined by whether
The evaluation of evidence is based on three the practice or strategy is based on a validated
currently employed standards that allow one to conceptual framework, a diversified sample,
align the questions being asked, what is best for data-triangulation, a clear report of the analysis,
whom, and what is best for what. These three and/or the generalizability of the findings (Claes
evaluation standards are the quality of the evi- et al., 2015; Daly et al., 2007; Schalock et al.,
dence, the robustness of the evidence, and the 2011).
relevance of the evidence. Relevance of evidence. The relevance of
Quality of evidence. The quality of evidence evidence is based on the purpose and use of the
is related to the type of measurement perspective practice in question, and how the practice
the particular research design used. In reference enhances personal well-being and supports pol-
to quantitative designs, the quality of evidence icy goals. For those making clinical decisions
can be ranked from high to low, with experi- related to diagnosis, classification, and planning
mental designs highest, followed by supports, relevant evidence is that which enhan-
quasi-experimental and nonexperimental designs ces the congruence between a specific clinical
(Gugiu, 2015; Sackett et al., 2005). In reference function and a desired outcome. For those

Table 9.4 Overview of Measurement perspective Research designs

evidence-gathering
strategies Quantitative
– Experimental Independent measures/groups
Repeated measures
Matched pairs
– Quasi-experimental Uncontrolled before and after studies
Time series designs
Controlled before and after studies
– Nonexperimental Descriptive/predictive/explanatory
Retrospective/cross-sectional/longitudinal
Qualitative Narrative research
Grounded theory
Ethnography/phenomenological
Participatory action research
Case study
122 R.L. Schalock et al.

making managerial decisions, relevant evidence design of interventions that are minimally intru-
is that which identifies organizational policies sive; (c) implementing the quality enhancement
and practices that enhance human functioning strategies via consultation and learning teams;
and personal outcomes. For those making policy and (d) stating clearly outcomes that are targeted
decisions, relevant evidence is that which sup- to concrete, observable behavior(s) that are
ports and enables organizations and systems to objectively measured over time.
be effective, efficient, and sustainable; influences
public attitudes toward people with intellectual
and developmental disabilities; enhances Dialog and Partnership
long-term outcomes for service recipients;
changes education and training strategies; The high stakes involved in successfully translating
encourages efficient resource allocation practices; the QOL concept into practice require both a dialog
and aligns policy goals, supports, and and a partnership. The dialog should focus on what
policy-related outcomes (Claes et al., 2015; is evidence; what are best practices; what perspec-
Schalock et al., 2011; Shogren et al., 2015; tives should be used to frame evidence-based
Turnbull & Stowe, 2014). practices; what evidence-gathering strategy is best
to use and in what situations; and what evaluation
standards should be used in making clinical, man-
A Systematic Approach agerial, and policy decisions.
to Translating Evidence into Practice The partnership should involve policy makers,
practitioners, and researchers. In this partnership,
If the QOL concept is to have a lasting, significant, policy makers should incorporate the concept of
and positive impact on disability-related policies outcome-driven policy formation to formulate
and practices, it must evolve to a well-recognized policy-relevant questions, specify QOL-related
and accepted evidence-based practice (Brown policy goals and targeted QOL-related outcomes,
et al., 2013; Gomez et al., 2015; Schalock & and indicate policy-relevant perspectives on
Verdugo, 2013a). In our judgment, this evolution evidence. Researchers should act on the
requires two things in addition to research related policy-related questions, policy goals, targeted
to establishing evidence-based practices. The first outcomes, and the relation between specific QOL
is to develop clear guidelines for translating evi- enhancement strategies and the targeted out-
dence into practice; the second is to establish a comes. Practitioners (including system-level
dialog and partnership among policy makers, personnel) should focus on developing policies
practitioners, and researchers. and practices that incorporate a quality of life
language of thought and action; understanding
the essential role that EBPs play in profession-
Guidelines for Translating Evidence alism, quality services, and the quality of life of
into Practice their service/support recipients; accessing the
published literature regarding best practices and
Four guidelines have emerged in the literature to evidence-based practices; and transforming their
facilitate the translation of evidence into practice. policies and practices to successfully infuse the
As discussed by Biesta (2010), Claes et al. QOL concept into their organization’s culture.
(2015), and Pronovost et al. (2008), they involve
the following: (a) being sensitive to the organi-
zation or system’s receptivity to the practice; Conclusion
(b) considering evidence-based practices within
the social-ecological perspective on disability In this chapter, we have discussed the factors that
and thus providing both a broader range of tar- in our estimation significantly influence the
gets for intervention/quality enhancement and the translation of the QOL concept into practice.
9 Translating the Quality of Life Concept into Practice 123

These factors involve using a validated QOL evidence-based practice. When this occurs, the
conceptual model, employing best practice QOL quality of life concept will then have evolved
enhancement strategies that are applied with from a sensitizing notion, to a change agent, to
fidelity, conducting research that is centered on an evidence-based practice.
hypothesis testing and leads to the establishment
of evidence-based practices, and using a sys-
tematic approach for translating evidence into
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Author Biographies focuses on quality of life (theoretical model and assessment

Robert L. Schalock, Ph.D., is Professor Emeritus at Hastings instruments), intellectual and developmental disabilities
College (Nebraska) where he chaired the Psychology (conceptualization, adaptive behaviour, supports and
Department and directed the Cognitive Behavior Lab from self-determination), and organizational change.
1967 to 2000. He currently has adjunct research appointments Laura E. Gomez, Ph.D., is a Professor of Psychology at the
at the University of Kansas (Beach Center), University of University of Oviedo and researcher at the Institute on
Salamanca (Spain), Gent University (Belgium), and Univer- Community Integration (INICO, Universidad de Salamanca).
sity of Chongqing (Mainland China). Bob has been involved Her research interests are in the area of intellectual disability
in the field of intellectual disability for the last 40 years. His and developmental disabilities. Her publications have focused
research focuses on the development and evaluation of mainly on the development and validation of quality of life
community-based programs for persons with disabilities and scales, but she has also made significant contributions in the
the key roles that the concept of quality of life and the sup- area of supports and adaptive behavior. Dr. Gómez has a large
ports paradigm play in planning and delivering individualized number of publications in peer-reviewed international jour-
supports within a service delivery system. nals and is a co-author of six assessment instruments to
Miguel A. Verdugo, Ph.D., is professor and director and measure quality of life (Gencat Scale, Integral Scale,
senior scientist of the Institute on Community Integration, INICO-FEAPS Scale, Fumat Scale, San Martin Scale, and
University of Salamanca, Spain. Dr. Verdugo’s research KidsLife Scale).
 Focus on Friendship: Relationships,
Inclusion, and Social Well-Being 10
Laura T. Eisenman, Brian Freedman and Marisa Kofke

Human relationships, including friendships, play 2013; Johnson et al., 2010; Nussbaum, 2011).
a central role in promoting a better quality of life Social well-being relates to experiences of
and a sense of well-being for people with or acceptance, engagement, and belonging. Within
without disabilities. Social well-being is inextri- the national (U.S.) research goals on social
cable from any definition of quality of life, inclusion of people with intellectual and devel-
whether considered from the perspectives of opmental disabilities suggested by Bogenschutz
philosophy, social science, health, or public et al. (2015), social well-being is viewed as an
policy. Across disciplines, a “good life” is outcome of interest itself and as connected to
framed in terms of objective measures, such as other critical life outcomes. The connections
those related to safety and health, that assure among physical and mental health and a sense of
basic human needs are met, but also includes social well-being are well-documented in the
subjective assessments of well-being, such as research literature on people with and without
feelings of belonging and general satisfaction disabilities, and these connections hold true
with one’s situation (Johnson, Walmsley, & across the lifespan (Gilmore & Cuskelly, 2014;
Wolfe, 2010; van Asselt-Goverts, Embregts, & Lafferty & McConkey, 2013; Mason, Timms,
Hendriks, 2015). Hayburn, & Watters, 2013; Mazurek, 2014).
Affiliation and social-connectedness are fun- The impact of having a diminished sense of
damental human capabilities that encompass social well-being is clearly demonstrated in
more than physical presence in a community studies of loneliness among people with intel-
(Amado, Stancliffe, McCarron, & McCallion, lectual and developmental disabilities (Amado
et al., 2013; Gilmore & Cuskelly, 2014; Koegel,
Ashbaugh, Koegel, Detar, & Regester, 2013;
Mazurek, 2014; van Asselt-Goverts et al., 2015).
L.T. Eisenman (&) Loneliness is common among this group and, as
School of Education, College of Education and
people age, they tend to have fewer friends and
Human Development, University of Delaware, 213H
Willard Hall, Newark, DE 19716, USA more limited interaction with them. However,
e-mail: [email protected] loneliness is more than just the absence of or
B. Freedman limited engagement with others. Loneliness
Center for Disabilities Studies, College of Education reflects a person’s sense that they are missing
and Human Development, University of Delaware, meaningful social connections and intimacy.
461 Wyoming Road, Newark, DE 19716, USA
People with intellectual and developmental dis-
e-mail: [email protected]
abilities typically experience less social-
M. Kofke
connectedness and fewer intimate relationships
University of Delaware, 213 WHL School of
Education, Newark, DE 19716, USA than their peers without disabilities. These
e-mail: [email protected] experiences of social and emotional isolation

© Springer International Publishing AG 2017 127

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_10
128 L.T. Eisenman et al.

have been linked to feelings of depression and from other types of social relationships.
suicidal thinking. Although friendships may be the source of per-
Social relationships have emotional and pro- sonal stress or sadness, they also offer benefits in
tective functions. Having larger numbers of the form of a continuing commitment to another,
people in an individual’s social network provides access to instrumental and emotional supports,
increased protection by increasing the likelihood close companionship, the possibility of more
of human engagement. However, the quality and intimate relationships, and feelings of
frequency of engagement with others, especially contentment.
friends, may matter more (Kreider et al., 2016; When asked about qualities of friends (Knox
Mazurek, 2014; van Asselt-Goverts et al., 2015). & Hickson, 2001; McVilly, Stancliffe, Par-
Although greater presence in the community is menter, & Burton-Smith, 2006), people with
necessary, it is not sufficient to promote social intellectual and developmental disabilities have
well-being (Amado et al., 2013; Hall, 2009). suggested that friends share activities and inter-
Engagement with others as part of community ests, act as trusted companions, and engage in
and structured activities, creation and mainte- two-way communication. Over time a sense of
nance of reciprocal relationships, and a sense of shared history is created. “Best” or more intimate
belonging reflect the fuller dimensions of social friends offer unconditional regard and can be
inclusion. expected to provide support whenever needed.
Professional caregivers are sometimes identified
as friends by people with intellectual and devel-
Friendship as a Key to Social opmental disabilities, which may reflect their
Well-Being physical proximity and the intimate nature of
caregiving relationships (e.g., shared residence,
In their discussion of aligning intellectual dis- physical support) as well as the more limited
ability policy, research, and practice across social networks of many people with disabilities.
socioecological contexts, Shogren, Luckasson, Philosophical and some professional perspectives
and Schalock (2015) identified three broad on friendship qualities often include the idea that
interconnected policy goals—human dignity and friends must be reciprocally chosen, in addition
autonomy, human endeavor, and human to demonstrating other relationship characteris-
engagement. In this model, human engagement is tics of mutual acceptance, affection, trust, and
represented by the three personal outcome support (Grieg, 2015; Schuh, Sundar, & Hagner,
domains of well-being, inclusion in society and 2015).
community life, and human relationships. These The idea of choice as an element of friendship
outcome domains are in turn influenced by a has raised questions about whether individuals
variety of factors. A recurring factor across all with the most profound intellectual disabilities
three outcome domains and contexts is have capabilities for friendship. Given their more
friendship. limited means of expressing choice, communi-
Having a variety of social relationships is cating recognition of another, or actively
important to social well-being, yet friendships demonstrating reciprocity, can a mutual friend-
have a significant and unique role in most peo- ship be said to exist? Bogdan and Taylor (1989)
ple’s lives. Adults with intellectual and devel- noted that people involved in close relationships
opmental disabilities have indicated that they with others who had significant cognitive
find added value in friendships versus familial impairments viewed those relationships in terms
and other types of social relationships (Lafferty of acceptance. Differences were not ignored, but
& McConkey, 2013; Mason et al., 2013). neither were they perceived as negative. The
Friendship is perceived as offering a desirable relationships were characterized as longstanding,
type of emotional engagement that is different close, and affectionate. This suggests the
10 Focus on Friendship: Relationships, Inclusion … 129

possibility for an ethic of friendship that does not other as friends opens the door for both indi-
depend on purposive reciprocated action. In this vidual and societal development that would not
view, a vulnerable and dependent person who be possible otherwise. Friendship interventions
has been accepted and befriended by another have too often focused on changing the individ-
person has participated in creating the social ual with the disability. Driven by a deficit ori-
good of friendship (Grieg, 2015; Hughes, Red- entation, these interventions typically have been
ley, & Ring, 2011). mediated by professionals who aim to teach or
remediate social skills of children and young
adults so that they will use socially normative
Promoting Friendship behaviors that minimize difference and make
them more likeable to nondisabled peers (Meyer,
Any effort to promote friendships with or on Park, Grenot-Scheyer, Schwartz, & Harry, 1998).
behalf of people with intellectual and develop- Less attention has been given to the social and
mental disabilities to extend their social rela- cultural contexts that frame understandings of
tionships, inclusion, or social well-being must friendship with and among people with IDD.
acknowledge multiple, overlapping socioecolog- Fein (2015) also noted the emphasis in many
ical layers of influence (Bogenschutz et al., 2015; western cultures on establishing friendships
Gilmore & Cuskelly, 2014; Hall, 2009; Mason based on personal choice and liking another; an
et al., 2013; Shogren et al., 2015; Simplican, approach that tends to neglect the broader social
Leader, Kosciulek, & Leahy, 2015). Friendships interaction patterns that affect individuals with
are bound in societal (e.g., cultural attitudes disabilities’ opportunities for friendships.
about disability), organizational (e.g., opportu- Intervening at the societal level requires
nities for involvement in community groups), acknowledging that cultural attitudes about dis-
interpersonal (e.g., establishing and maintaining ability and the social policies regarding where
relationships), and individual (e.g., social individuals with intellectual and developmental
awareness) dimensions. In the following sec- disabilities live and learn are interconnected.
tions, practices that may help to promote Attitudes of people without disabilities can be
friendships at each socioecological level are positively shaped by opportunities for learning
considered across the lifespan and different social about disability and sharing activities within the
contexts. In alignment with positive psychology context of inclusive educational policies (Rillotta
and disability studies frameworks (Brueggeman, & Nettelbeck, 2007). Likewise, policies and
2013; Shogren, 2013), the intent is to examine policy statements that facilitate community
practices that create opportunities for friendship presence and participation of people with intel-
based on a strengths-based perspective, account lectual and developmental disabilities are essen-
for individual choice and agency across a range tial to the development of the variety of
of capabilities, and value disability as a natural interpersonal relationships that represent per-
part of human diversity. sonally meaningful social inclusion and promote
a sense of belonging (Andrews, Falkmer, &
Girdler, 2015). The US Supreme Court’s Olm-
Societal stead decision (Dinerstein, 2016), which rejected
unjustified segregation of people with disabilities
Promoting a worldview in which intellectual and and reiterated an underlying principle of least
developmental disabilities is not only accepted restrictive environment, represents movement in
but valued has the potential to create mutually that direction. Following from Olmstead, policies
transformative social relationships (Grieg, 2015). aimed at rebalancing government expenditures to
Intentionally recognizing others’ common prioritize supports for integrated community
humanity in the midst of diversity and purpose- living arrangements and employment while also
fully creating opportunities for being with each facilitating person-centered life choices hold
130 L.T. Eisenman et al.

promise for changing the societal patterns of Kulik, & Rooney, 2004). Regular (e.g., weekly)
engagement that influence the friendships and access to community groups and activities are
social well-being of people with intellectual and necessary foundations for social inclusion and
developmental disabilities. The federal policy forming and maintaining friendships (Amado
statement on inclusion of students with disabili- et al., 2013; Money, Friends and Making
ties in early childhood settings (US HHS & Ends Meet Research Group, 2012; White &
DOE, 2015) cites the development of friendships McKenzie, 2015).
with peers, specifically, as one of several out- People with intellectual and developmental
comes that can result from increased efforts disabilities often count their paid caregivers as
toward fostering more inclusive settings. Such friends. In L’Arche communities, this dynamic is
policy statements can be helpful as they offer the embraced, and efforts are made to develop
evidence, legal grounds, and resources to support reciprocal relationships supported by the larger
states, organizations, and families in advocating residential community in which people with
for environments that will more naturally facili- intellectual and developmental disabilities are
tate social engagement and friendships. viewed as valued members with unique gifts
(Pottie & Sumarah, 2004). Friendships are facil-
itated by sharing daily living situations and
Organizational major life passages that become woven into a
co-constructed story of life together. The larger
The interconnectedness of personal and envi- L’Arche community context supports friendships
ronmental factors in creating the conditions for and a sense of belonging through a culture of
friendship is also evident at the organizational valuing and celebrating each person and finding
level, where policies are translated into practices. ways to involve all members in common activi-
Across residential, employment, education, and ties (e.g., decision-making meetings). Friendships
leisure domains setting factors and individual can become strained when contact is diminished
characteristics both play a role in determining the or lost due to staff turnover or competing
quality of social interactions and the nature of responsibilities. Lack of privacy, staff’s position
friendships. of authority, and straying from a communal
Residential. In studies of different types of vision all may cause tensions in friendships.
supported residential arrangements (e.g., sup- Employment. Similar to individualized sup-
ported living, group homes, clustered congre- ported living arrangements, supported employ-
gate), the setting type tends to be a stronger ment can lead to more integrated and larger
predictor of social activities and friendships than social networks for people with intellectual and
the characteristics of the individuals with dis- developmental disabilities (Cramm, Finken-
abilities (McConkey, 2007). People in group or flugel, Kuijsten, & van Exel, 2009). Contact with
clustered arrangements may have easier access to co-workers within the structure of work and
their friends, who also tend to be other people engagement in work-related social interactions
with intellectual and developmental disabilities. have been associated with a greater sense of
However, in general, people living in supported well-being reported by people with intellectual
living arrangements are more likely to engage in and developmental disabilities. However, those
friendship activities outside their homes and have experiences vary widely, and there is limited
larger networks of friends. Yet, some people with evidence that workplace interactions directly
intellectual and developmental disabilities in translate into reciprocal relationships or friend-
more dispersed settings, including people with ships outside of work. Interestingly, people of
higher levels of social competence, may be at retirement age who participated on a weekly
higher risk of social isolation. Aging is also basis in a community group related to an area of
sometimes associated with a sense of loss of personal interest experienced increased friend-
family and friend relationships (Leroy, Walsh, ships, acquaintances, and social satisfaction
10 Focus on Friendship: Relationships, Inclusion … 131

when compared to people who continued to work 1, expectations are clearly communicated to all
all week (Amado et al., 2013). This suggests the students, routines are established and rewards are
importance of creating structured, socially provided for positive behavior. Next, more tar-
focused activities rather than relying solely on geted support is offered (Tier 2) to those students
shared work activities to cultivate friendships. who are less responsive to Tier 1 supports. This
Education. Within education, friendship could include self-management skills and social
development may occur as a secondary outcome skills instruction (Tier 2). The next level of
of inclusive classroom structures. Structured peer support offers a more individualized approach
supports in inclusive classrooms can promote (Tier 3) for students who require additional
increased social interactions and friendships for intervention beyond what is offered through Tier
adolescents with intellectual and developmental 1 and Tier 2, including functional behavior
disabilities (Carter et al., 2016; Feldman, Carter, assessments and formal behavior intervention
Asmus, & Brock, 2016). Students with more plans. While friendship for students with intel-
extensive support needs may be physically pre- lectual and developmental disabilities is not
sent in a classroom with their nondisabled necessarily a targeted outcome, SW-PBIS creates
peers, but are less likely to be engaged with peers a context that promotes inclusion and expects
unless attention is given to the forms of class- appropriate and positive social relationships
room supports that are used (e.g., paraprofes- among all students. For example, participation in
sionals, peers, collaborative learning). SW-PBIS has been associated with less bullying
Systematically shifting academic and social and peer-rejection, and this impact was stronger
supports to peers with the guidance of a para- the longer a student had participated in SW-PBIS
professional or teacher has produced increased (Waasdorp, Bradshaw, & Leaf, 2012). Further,
academic engagement for adolescents with more peer- and teacher-mediated interventions pro-
extensive support needs while also increasing moting friendship may be incorporated as Tier 2
their level of social interaction, participation, and interventions.
goal attainment. Additionally, peers reported Friendship development also may be an
having more friendships with students with sev- explicit goal within an education curriculum. For
ere impairments as compared to peers in class- example, the Youth Empowerment Services
rooms with teacher-delivered supports. Creating (YES) curriculum for youth with and without
structured opportunities for participation by disabilities involved students for four hours once
young adults with intellectual and developmental per month to learn about friendships and social
disabilities in inclusive higher education classes relationships, establishing an inclusive school
and dormitories also may contribute to friendship community, leadership development and men-
formation as peers become familiar with and toring, and student-directed planning (Schuh
accepting of each other (Griffin, Summer, et al., 2015). Participants reported that friend-
McMillan, Day, & Hodapp, 2012; Hafner, Mof- ships, which developed inside and outside the
fat, & Kisa, 2011). group, were not limited by disability identifica-
School-wide positive behavior intervention tion, supported them to talk about their transition
and supports systems (SW-PBIS) also may goals and strategies, and led them to meet their
impact friendships by facilitating an environment goals. Students further indicated that friendships
that promotes prosocial behavior and decreases gave them greater feelings of acceptance and
challenging and bullying behavior. SW-PBIS inclusion as compared to feelings of stigma and
requires a commitment from the entire school to exclusion they faced in schools.
promoting a multi-tiered system of support Other examples of creating educational social
(Dunlap, Kincaid, & Jackson, 2013). First, a set spaces that can help to promote friendships for
of expectations for prosocial behavior and social youth with intellectual and developmental dis-
competencies is established, promoted, and abilities and/or autism are recreationally focused
reinforced across all students (Tier 1). Under Tier activity programs sponsored by schools
132 L.T. Eisenman et al.

(e.g., Recreation Experience Activity Club for shared disability identity. Acceptance within the
Teens-REACT—Barber, 2015) or adult educa- group of a range of intellectual and physical
tion organizations (e.g., Next Chapter Book Club differences combined with an ethic of teamwork
—NCBC—Fish, Rabidoux, Ober, & Graff, and sportsmanship facilitates a sense of
2006). These programs have an underlying belonging.
instructional purpose (i.e., social skills and liter- Similar strategies can be successful in recre-
acy, respectively), but utilize community envi- ational programs that purposely target individu-
ronments and activities to enhance opportunities als with and without intellectual and
for social interactions. Typically, a group of developmental disabilities. Unified Sports is a
people with and without disabilities plus a group branch of Special Olympics that creates sports
facilitator gather once or twice each month in a teams that include people with and without
public venue. Facilitators and peers model the intellectual and developmental disabilities who
targeted skills while also encouraging engage- have similar athletic skill. The purpose is to
ment with other group and community members. foster friendships and social inclusion through
Informally, participants of such programs have practices and competition. In a study of program
indicated that the activities are fun and help them outcomes among adolescent and young adult
to make new friends. participants from five European countries,
Leisure. Friendships are more likely to McConkey, Dowling, Hassan, and Menke (2013)
develop through integrated campus and com- found increases in personal development, bond-
munity leisure and recreational activities when ing between participants, and positive percep-
attention is given to providing structure for tions of people with intellectual and
shared activities, connecting people with shared developmental disabilities, all of which seemed
interests, and building in adaptations that facili- to foster more friendships. The extent of these
tate participation (Andrews et al., 2015; Eisen- friendships was unclear, although athletes with
man, Farley-Ripple, Culnane, & Freedman, intellectual and developmental disabilities and
2013; Ross, Marcell, Williams, & Carlson, their families indicated the multiple ways in
2013). Lack of accommodation in leisure activ- which this type of program helped them to
ities can lead to individuals with disabilities develop athletic skills (which translated into
having feelings of being tolerated, but not invited increased social desirability) and interpersonal
to belong. Acceptance is more often perceived skills. Participants without disabilities described
in situations where activities have clear role their changing perceptions, increased comfort
definitions, formal instruction is provided over level, authentic connections, and bonding that
time, and the focus is on skill-building or occurred. While the underlying principles of
appreciation (Devine & Lashua, 2002). In turn, Unified Sports facilitated an environment that
feeling socially accepted is perceived by people fosters equality, shared interests and social
with intellectual and developmental disabilities inclusion, a team’s overall success did appear to
as a foundation for building friendships and be dependent on the coach’s skill in promoting
greater satisfaction with leisure activities. Special this type of environment while also coaching
Olympics offers an interesting example of how a sports-specific skills. Therefore, resources to
leisure activity that is often perceived by identify and develop more coaches were seen as
nondisabled outsiders as segregated and stigma- critical (McConkey et al., 2013).
tized creates a recreationally focused kinship Siperstein, Glick, and Parker (2009) estab-
group (Caldeira, 2015). People with intellectual lished a summer sports program that included
and developmental disabilities may identify equal numbers of students with and without
Special Olympics as the place where they meet intellectual and developmental disabilities.
their friends. Families value the shared informa- Emphasis throughout the camp was put on
tion and resources. In both cases, the social group strengths, personal skill development and team
revolves around shared activities premised on cohesion. Traditional athletic competition
10 Focus on Friendship: Relationships, Inclusion … 133

between and among teams was down-played. creating friendships. At other times, personal
Staff members created an inclusive atmosphere characteristics related to disability may make
that encouraged equal participation among all initiating friendships more challenging. Further,
participants. By the end of the program, nondis- the education and adult support systems in the
abled peers were just as likely to identify friend- United States often create isolating experiences
ships with students with intellectual and for people with intellectual and developmental
developmental disabilities as they did with other disabilities. Whether a person is placed in a
nondisabled campers. Interestingly, improvement segregated setting (literally isolated) or in a
in athletic ability was strongly correlated with poorly managed inclusive setting (figuratively
stronger social connections, regardless of whether isolated), people with intellectual and develop-
a person had a disability or not. This may reflect mental disabilities are often at an immediate
the importance to all participants of the value in a disadvantage for connecting with others and
sports camp of having strong athletic ability. forming friendships. As a result, they may rely
Organized recreational and leisure spaces can on others in their lives—peers, teachers, and
also be designed to flexibly incorporate individ- parents—to help foster and facilitate friendships.
uals with different social, communication, and Self-directed approaches. Adults with intel-
literacy skill levels. Examples include online lectual and developmental disabilities have
social media and virtual worlds that attract indi- shared their perspectives on the types of behav-
viduals with similar interests, permit personal iors and activities that they use to support
control over level of involvement, afford oppor- friendships that foster a sense of well-being
tunities for novices and experts to interact, and (Having Friends, 2012; Knox & Hickson, 2001;
motivate interaction through sharing of infor- Mason et al., 2013). The level of intimacy in a
mation, games, or role play in ways that are less friendship may be differentiated by the higher
dependent on the types of communication and degree to which these activities are expected, the
social cues used in the physical world (Fein, intensity of emotional engagement, and the
2015; Mazurek, 2013; Stendahl & Balandin, acknowledgment of a deeper commitment to the
2015). Especially for people with conditions other. Shared leisure activities and being inten-
associated with social participation difficulties tional about making arrangements to be together
(e.g., autism spectrum disorders), these types of are commonly mentioned components for
social spaces can promote a person’s use of building and maintaining friendships. Friend-
flexible social repertoires while also providing ships are also kept alive through sharing stories
opportunities for them to develop and sustain and memories. Friends allow each other to find
multiple friendships. In a study of adults with time to be alone and participate in other rela-
autism spectrum disorders, Mazurek (2013) tionships. Friends are expected to be kind and
learned that individuals who used social media helpful both practically (e.g., meeting at a bus
were more likely to report having close friends, stop to travel together) and emotionally (e.g.,
although decreased loneliness was associated talking about things that would not be shared
with higher quality and quantity of offline with others). A sense of reciprocity is enjoyed,
friendships. although being in more of a helping role with
some friends may be an accepted or valued part
of a particular friendship. Sharing a common
Interpersonal identity, especially focused on a common dis-
ability, can support a sense of equality. Perceiv-
Beginning in childhood, friends are often iden- ing an unbalanced power dynamic may be
tified by each other as a result of shared interests, associated with feelings of vulnerability and fears
activities, and characteristics (Carter et al., 2013; of exploitation.
Frankel, 2010). Individuals with or without Peer-mediated intervention. Peer influence
disabilities themselves may take the lead in on the development of friendships begins at an
134 L.T. Eisenman et al.

early age and continues through adulthood. spanned settings (Strain & Hoyson, 2000) and
Peer-mediation as an intervention is typically time (Strain & Bovey, 2011), setting the stage for
part of a programmatic effort in schools. greater friendships with others in other settings.
Preschool. Preschool classrooms are envi- Elementary school. Given the lack of gener-
ronments that seem to be particularly conducive alizability of social skills taught in isolated set-
to developing friendships, since social-emotional tings (Bellini, Peters, Benner, Hopf, 2007),
learning, which includes learning how to develop peer-mediated interventions can create a more
positive relationships with peers, is considered immediate and direct impact on relationships by
critical for early childhood (Denham & Brown, providing information and strategies to peers and
2010). The strongest literature on relationship then supporting them in the facilitation of social
and friendship development among preschool engagement. Peer training in elementary school
children with autism comes from the LEAP can take multiple forms.
model (Strain & Bovey, 2014). Within these Kasari, Rotheram-Fuller, Locke, and Gulsrud
classrooms, students with and without autism are (2012) trained peers over 12-weeks on how to
taught methods for playing with and relating to engage their fellow students with social partici-
one another. Based on research about play pation limitations on the playground. Social
behaviors among young children with and with- challenges were described more broadly so that
out autism, all children are taught how to engage students with autism (the target population) were
in: getting a peer’s attention; reciprocal sharing; not specifically identified. Peers received training
using play organizers (e.g., “Let’s play prin- on identifying a child who appeared isolated,
cesses”); and giving compliments. strategies for engaging the student, modeling
The LEAP model is driven by peer-mediated prosocial behaviors, and including the student
support whereby students are taught how to teach into games and activities. Teachers reinforced
and reinforce social engagement behaviors to peers as they facilitated interactions. Students
their peers with autism (Strain & Bovey, 2014). with autism benefited more from a peer-mediated
All students are taught prosocial engagement intervention in comparison to a traditional inter-
skills in a large group setting and then teachers vention that directly targeted the child. However,
facilitate play in smaller group settings, prompt- students with autism fared best when they par-
ing peers to engage or encourage engagement ticipated in both interventions. Students with
from students with autism. Teachers also pur- autism whose classmates received the
posely set-up play centers to include known peer-mediated intervention, either alone or when
activities of interest for students with autism and paired with an individualized skills-based cur-
manipulate the number of centers available and riculum, had a decrease in isolative play on the
the amount of students at each center, in order to playground and were nominated as friends more
ensure adequate opportunities for interaction. often on measures of classmates’ social net-
The intervention is manualized and designed to works. Yet, there was very little change in
be delivered by teachers in public schools. reciprocal relationships (i.e., students with autism
However, intervention efficacy was more limited and peers nominate each other as friends) sug-
when manual use was not paired with on-site gesting that perhaps strong friendships had not
coaching by experts in the intervention (Strain & quite been reached or students with autism were
Bovey, 2011). Still, outcomes for LEAP are either not interested in their peers as friends or
promising. Children with autism spectrum dis- did not recognize them yet as a friend.
orders showed an increased amount of social Owen-DeSchryver, Carr, Cale and
participation and improved quality of social Blakeley-Smith (2008) trained peers using a
engagements and these gains were significantly more explicit approach regarding education on
higher than for students who received more tra- disabilities. Peers were taught specifically about
ditional social skill training from an adult people with autism and the benefits of being in
(Kohler & Strain, 1999). These social gains also an inclusive setting. They were guided through
10 Focus on Friendship: Relationships, Inclusion … 135

activities aimed to help them understand the Mullins, Harvey, Gustafson, & Carter (2016)
importance of peer friendships to all students, noted the youths’ preference for learning social
including students with autism spectrum disor- skills with peers, as opposed to direct instruction
ders. Peers were supported in identifying by a teacher. Peers also reported enjoying
strengths of specific children with autism spec- working together toward social skills develop-
trum disorders. Finally, peers learned strategies ment (Hochman, Carter, Bottema-Beutel, Har-
for connecting with students with autism, vey, & Gustafson, 2015). When youth with
encouraging their participation, and teaching autism and peers have the opportunity to partic-
them how to play. Although social networks and ipate in activities that focus on areas of strength
friendship development were not measured, all authentic friendships can be fostered (Diener,
students with autism as well as trained peers and Wright, Dunn, Wright, Anderson, & Smith,
un-trained peers increased their social initiations 2015).
with one another by the end of the intervention Dopp and Block (2004) provided suggestions
and at a 12-week follow-up. Furthermore, these for implementing peer leaders at the secondary
initiations occurred in contexts that were more level to promote conflict resolution support at a
favorable for play and friendship development high school. While friendship was not an explicit
(e.g., lunch and recess). It’s important to note goal of the peer leader program, the students who
that peer-mediated interventions do not always participated as peer leaders completed the pro-
result in stronger social engagement (Kasari gram with increased social development.
et al., 2016) and most intervention studies do not Teachers, or other practitioners like a guidance
necessarily target friendship as a direct outcome counselor, acted as a facilitator for peer leaders.
(Carter et al., 2013). However, these The facilitators trained a group of peer leaders
peer-mediated interventions can create the con- within a single day on targeted social skills.
ditions under which friendships are more likely Then, the peer leaders worked with students in
to occur. their classes. The peer leaders consisted of an
Adolescence. Adolescence can be a particu- array of students, including those with disabili-
larly difficult time for students with intellectual ties. Ideas for conflict resolution strategies to use
and developmental disabilities to form or main- in their classrooms were encouraged from the
tain connections with their peers. Although they peer leaders with approval from the facilitators.
may be in inclusive classrooms, many teenagers The peer leader program was received enthusi-
with intellectual and developmental disabilities astically from classmates. The peer leaders with
report feeling disconnected from peers and lonely disabilities reported more positive social devel-
(Carter et al., 2013). In fact, fewer than 25% of opment as a result of being a peer leader;
students with intellectual and developmental specifically, students with behavioral disorders
disabilities or multiple disabilities frequently see reported increased ability in resolving their
friends outside of school and fewer than 50% problems and patience.
frequently receive phone calls from friends Several of the ideas put forth by Dopp and
(Wagner, Cadwallader, Garza & Cameto, 2004). Block were successfully implemented in a study
The nature of relationships often changes as cli- of four students with intellectual and develop-
ques develop and friendships occur outside of mental disabilities and/or autism. Students
structured instructional spaces and times where worked with several peer coaches (called a peer
adults may not be present. Opportunities for network) during lunchtime along with an adult
social connections may be diminished due to the facilitator, which led to increased socialization
formation of new friendship groups and limited for the participants during the sessions. The
availability of integrated leisure activities. facilitators and peer network coaches were
Developing peer mentoring activities may be a trained in study protocols and objectives, with
way to counteract these changes. In a study of peer coaches completing data, and the teacher
adolescents with autism, Bottema-Beutel, facilitator providing feedback to the peer coaches
136 L.T. Eisenman et al.

after the sessions. Participants did not immedi- (Eisenman, Tanverdi, Perrington, & Geiman,
ately generalize their social relationships to other 2009; Lafferty & McConkey, 2013; McVilly
settings. However, it was noted that students and et al., 2006; White & McKenzie, 2015).
their peer coaches had informal exchanges at Although friendship cannot be forced, it can be
other times of the school day. The peer coaches supported through instrumental actions such as
concluded that they had made a new friend with creating regular, planned opportunities to meet
their participant (Hochman et al., 2015). with peers in the community and one’s own
Adults. One of the best known peer-mediated home and offering encouragement and advice
interventions is Best Buddies, in which a person about how to approach others and join activities.
with intellectual and developmental disabilities is Parents. Family members can be engaged as
matched with a nondisabled person for the pur- social instructors in the home and community
poses of enjoying social interactions and devel- (Bateman, Bright, & Boldin, 2003). These
oping a friendship. Buddies commit to doing trainings typically occur simultaneously while
activities with each other one or more times each the child is receiving social skills intervention in
month, maintaining more regular contact through school. Elementary-school age children benefit
email or telephone, and joining larger group from their parents’ support to create a social
activities with other buddies from their local network, identify peers with similar interests,
chapter at least once each month. Best Buddies organize play dates, and identify other play
programs may be based in schools or colleges to environments that the child can join (Frankel &
foster relationships among students and near-age Whitham, 2011). Once play dates are created or
peers or in the community for adults. Hardman social situations are identified, parents learn how
and Clark (2006) surveyed buddies from 140 to help their child initiate or join an activity, as
college programs nationally to gain insight into well as to facilitate the activity successfully and
the buddy relationship and outcomes. They noted navigate conflicts that arise (Frankel et al. 2010).
that buddy pairs frequently were of mixed gen- In some cases, interventions have been converted
der, consistent with other studies of friendships into more easily digestible manuals and offer
between people with and without intellectual and stand-alone support for families to help their
developmental disabilities. Female college stu- child form friendships (e.g., Laugeson, 2013). In
dents were more likely to be the nondisabled this manner, PEERS is a unique program due to
member of the pair and the buddy with intellec- the flexibility of curricular implementation in a
tual and developmental disabilities tended to be variety of settings with different facilitators.
older than his or her partner. Both members in Using the family-based guide, families can suc-
buddy dyads often reported that they liked doing cessfully implement the curriculum, with positive
activities together. They also typically indicated effects relating to the increased social ability of
that the partnership improved the life of the their youth (Laugeson & Frankel, 2010). Fami-
person with intellectual and developmental dis- lies also successfully incorporate homework
abilities, although this aspect was noted less assignments related to the social skills curricu-
frequently by the member with the disability. lum, which suggests their desire to incorporate
Mediation by significant others. Friendships social interventions in the home (Karst et al.,
occasionally may be informally, yet intention- 2014).
ally, facilitated by parents, teachers, staff, or Interventions utilizing the child friendship
other friends. For many adults as well as children training model (Frankel & Myatt, 2003) with
with intellectual and developmental disabilities, children described as having high functioning
major barriers to pursuing a friendship include autism and Fetal Alcohol Syndrome have shown
the lack of independent community transporta- an increase in child’s popularity, more produc-
tion that is necessary to connect in person, tive use of playdate time (e.g., less isolative
establishing time and space for activities, and electronic games) and less reported loneliness
navigating interpersonal problems with friends among participants (Frankel et al., 2010).
10 Focus on Friendship: Relationships, Inclusion … 137

However, the intervention did not consistently Royle (2003) reported mixed findings in trying to
result in reciprocated playdates, suggesting that create opportunities for children with intellectual
there may be limitations to the levels of friend- and developmental disabilities to join a local
ship that might be achieved, at least after only a community center’s recreational activities and
few months beyond treatment completion. It may have their support facilitated by a specially
be that there was some reluctance to reciprocate trained coach. Successful integration into the
playdates initially and that this could increase group was dependent upon the level of support
over the course of time as parents and peers needed for participation, openness by the activ-
identify the value in the friendship. ity’s coach to having students with intellectual
Teachers and other professionals. Beyond and developmental disabilities participate, and
formal instructional practices, other opportunities successful match between the support coach and
(e.g., lunch, recess, and extracurricular events) participant and family. Due to the informal nat-
are available in the school and community for ure of the activities, raising awareness about the
play and friendship-building. Carter et al. (2013) availability of the program proved difficult. And,
suggested key practices for a school staff to since these programs were somewhat randomly
consider in helping establish and facilitate a identified, the goodness of fit for meeting the
successful peer network between students with goals of participation were not always ideal.
intellectual and developmental disabilities and Residential staff also act as mediators of
their nondisabled peers: make connections access to friendship opportunities. Their beliefs
between students with shared interests, identify about what constitutes social inclusion and the
specific times for peer network meetings to ensure social capabilities of people with disabilities can
meeting consistency, encourage reciprocal rela- make a difference in whether they arrange for and
tionships and not just helping relationships, and support activities that render individuals with
guide students without disabilities on strategies intellectual and developmental disabilities as
for initiating with students with intellectual and merely present in the community or identify
developmental disabilities (e.g., how to converse ways to ensure that people they support enjoy
with someone who uses communication device). full participation in social activities with others,
Staff in community recreational programs can including those with and without disabilities
also offer informal (i.e., less clinical) opportuni- (Clement & Bigby, 2009).
ties for people with intellectual and develop- Support groups. Circles of support (Gold,
mental disabilities to connect with others and 1994) purposefully blend instrumental and social
form friendships. Such settings typically offer activities by bringing together a group of
structured activities and can be identified based acquaintances, friends, and/or family members to
on particular interest, such as theater or sports, support an individual with disabilities. The group
allowing the person greater opportunity to con- focus is not exclusively on developing friend-
nect with others who have a shared interest, ships; most participants have already established
which is critical for friendship development. For a relationship with the person at the center of the
example, Becker and Dusing (2010) described a circle. However, by assisting the person to make
process they used for incorporating an 11-year additional connections in the community and
old with Down syndrome into a community problem-solve around personal and environ-
theater group. A physical therapist provided mental concerns, the group can provide a basis
modifications to choreography in order to sup- for further friendship development. For people
port her involvement. Over time, peers reportedly with more extensive support needs, purposefully
became more involved and less formal support orchestrating opportunities to engage with others,
was required. While it was not reported whether who view them as unique and valued individuals
friendships were formed through her participa- whose presence in social activities is appreciated,
tion in the theater group, parent-reported mea- can be another avenue toward friendship (Bog-
sures of quality of life did improve. Fennick and dan & Taylor, 1989; Hughes et al., 2011).
138 L.T. Eisenman et al.

Individual components of this curriculum. While intended

for use with students with autism, students with
Building communicative competencies, acquir- intellectual disability could also benefit from
ing social knowledge about self and others, and participation in the lessons (Laugeson & Frankel,
establishing a personally validated positive 2010). Students participate in small group les-
identity can help to improve social outcomes and sons, role plays, and other exercises to learn
social capital of individuals with intellectual and cognitive strategies that enhance their social
developmental disabilities and/or autism. These perspective-taking and problem-solving (Lauge-
in turn create new opportunities for friendship son & Park, 2014). Another example of a
and experiencing well-being (Fein, 2015; Mehl- school-based approach is Social Thinking
ing & Tasse, 2015). (Crooke & Winner, n.d.). This framework uti-
Communicative competency. Numerous lizes a breadth of materials and strategies such as
school-based approaches exist for supporting a social stories and video modeling, along with
person with intellectual and developmental dis- curriculum packages. Teachers choose from
abilities to connect with peers and build friend- many materials they think will work with their
ships by developing social communication skills. students’ social goals. This approach, although
Such practices may be executed in connection not empirically validated, has become popular
with a formal goal in an Individualized Educa- with secondary level teachers, because of its
tion Plan or as a more informal avenue for flexibility and promise to address the social skills
facilitating connections between the student and needs of secondary, postsecondary, and adult
others. The large majority of interventions individuals with autism and/or intellectual
involve direct instruction either in isolation (e.g., disability.
conversational turn-taking; Hunt, Alwell, & A critical consideration for developing com-
Goetz, 1991), as a package that includes multiple municative competence is to ensure that indi-
skills (Kasari et al., 2016), or a package of skills viduals have access to augmentative and
plus education in social-emotional concepts alternative communication (AAC) as needed.
and/or perspective-taking (Laugeson & Frankel, Teaching and implementing AAC techniques can
2010). These practices are offered in group set- enable greater peer interaction and, therefore,
tings that include multiple students with social create circumstances in which friendships may be
challenges. The large majority of studies have formed. In their review of 31 different studies
been conducted with students with autism. Group involving AAC, Chung, Carter, and Sisco (2012)
social skills interventions specifically for chil- found that implementation of low technology
dren with autism have shown to impact devices (e.g., communication books) have shown
improvement in friendships and decreased lone- promise in supporting peer interaction. Peer
liness (Reichow, Steiner, & Volkmar, 2013) training, along with introduction of the AAC
although several reviews identified studies that device, was indicated as an important component
did not show positive effects, had inconsistent of the more successful interventions. Similarly,
results and/or poor generalization/maintenance of interventions involving visual cues, such as
skills (Reichow & Volkmar, 2010), particularly video models have also shown promise in
when conducted in school settings (Bellini et al., enhancing social skills (Reichow & Volkmar,
2007). 2010).
The PEERS curriculum is an empirically Social knowledge. In conjunction with pro-
validated social skills program that uses scripted moting social communication skill, systematic
lessons with an emphasis on learning ecologi- instruction related to knowledge about friendship
cally valid social skills. Student motivation to and social awareness can be beneficial. For
lean social skills and completion of homework example, Jobling, Moni, and Nolan (2000)
assignments incorporating opportunities for described an 8-week program for young adults
social practice in the home are important ages 18–21 that was intended to help participants
10 Focus on Friendship: Relationships, Inclusion … 139

understand friendships. Topics included different forums. The online community spaces of formal
types of friendships, emotions related to friend- associations such as the Autistic Self-Advocacy
ships, and gender roles. Explicit didactic Network (ASAN) or the Society for Disability
instruction coupled with videos and discussions Studies (SDS) neurodiversity caucus provide
about participants’ own experiences were utilized springboards for communication with
to support individual understanding. Program like-minded individuals as well as opportunities
staff reported that the most challenging aspects of for individuals to get to know each other and to
the approach included the literacy demands of learn about autism and neurodiversity. Some
the materials and teaching about abstract ideas people who identify as neurodiverse view these
and emotions. Managing discussion of the par- as the only spaces where they can connect with
ticipants’ friendships, which were a dynamic in others who understand and support them
and outside the group, also required staff to (Brownlow, Rosqvist, & O’Dell, 2013) Engaging
consider ways that supported individuals to feel in these communities may impact positive iden-
comfortable with sharing personal experiences. tity development with adults (Davidson & Orsini,
Ward, Atkinson, and Smith (2013) conducted 2013).
an evaluation of a program intended to teach Positive identity. People with intellectual and
individuals with IDD the skills they needed to developmental disabilities often recognize the
participate in healthy intimate relationships and negative stereotypes associated with their
avoid violence with intimate partners. The impairments and may accept a negative social
10-week program (total of about 30 h) alternated identity, leading to lower self-esteem and less
classroom-based instructional sessions with psychological and social well-being (Ali, Hassi-
community-based experiential sessions. Topics otis, Strydom, & King, 2012; Paterson, McKen-
advanced from learning about feelings and types zie, & Lindsey, 2012; Spassiani & Friedman,
of relationships to exploring personal boundaries, 2014). Similarly, in Baines’ (2012) and Baga-
modes of communication, strategies for meeting tell’s (2007) ethnographies, adolescent males
people, managing first impressions, and planning strived to mask their autism while at school and
social and dating activities. Later topics included pass as nonautistic. This involved great effort on
personal safety, sexual health, and gender dif- their parts to not only hide their autistic traits but
ferences. Results, maintained over a 10-week also involved denigrating their autistic label.
period post-program, indicated that participants After graduation from high school, the partici-
increased their social networks and incidents of pant in Bagatell’s study described his initial
interpersonal violence decreased. surprise to meet other autistic adults and partic-
Another approach is to teach individuals the ipate in an adult autistic group, where they
skills necessary for social activities planning. demonstrated pride in having autism. In another
Koegel et al. (2013) supported college students study Alverson, Lindstrom, and Hirano (2015)
with Asperger’s Syndrome through weekly 1-h noted that high school students who had positive
sessions to learn and independently apply the identification and understanding of autism when
steps involved in social planning for participation they were in high school had more positive
in activities related to personal interests plus the postsecondary outcomes.
organizational skills (e.g., making notes in a When viewing disability from a sociocultural
daily planner, arranging transportation). perspective, identifying with disability can pro-
Although friendships were not an explicit target vide individuals with a positive frame for under-
of the intervention, participants reported increa- standing their disability experiences. Brueggeman
ses in the number of friends and other peers with (2013) puts forth an identity model of disability,
whom they socialized and greater satisfaction which promotes claiming disability and recog-
with peer interactions. nizing a larger disability community. Identifying
Yet another avenue for acquiring social one’s disability as an integral part of self and
knowledge is through online communication finding membership in a community can lead to
140 L.T. Eisenman et al.

positive perception of disability. In addition to disabilities, who can share in the experiences of
connecting young adults with accepting commu- companionship, commitment, and caring that
nities, promoting positive disability identity characterize the friendships most desired by
development can be accomplished in part by people with intellectual and developmental dis-
teaching self-determination strategies (Weh- abilities. Friendships, including intimate partner
meyer, 2008). From the earliest ages, this involves relationships, are an important key to their social
supporting individuals to develop self-awareness well-being.
and self-advocacy skills and to have agency in Although there are a variety of self-directed,
planning their life goals in the context of high peer-mediated, and parent- or professional-
expectations, communities that value choice, and facilitated approaches to friendship development
meaningful social connections with family and described in the literature, there is room for fur-
friends (Wehmeyer, Field, & Thoma 2012). ther exploration of approaches that incorporate a
wider array of voices and perspectives of people
with intellectual and developmental disabilities
Conclusion within and across diverse macrocultural contexts.
Disability communities that value disability
Opportunities for friendships among people with identity also represent important contexts—whe-
intellectual and developmental disabilities and ther located in online social media or other venues
others have been negatively shaped by long- —for examining friendship and social well-being.
standing patterns of social segregation. Even as The impact of increasing social inclusion from
social inclusion has become a prominent goal of early childhood through adulthood on friendships
policy and practice, the quantity and quality of among people with intellectual and develop-
friendships experienced by people with intellec- mental disabilities and others who do not identify
tual and developmental disabilities continue to be as disabled may also change the nature of the
influenced by the cultural attitudes and social questions asked about friendship and social
interactions that have framed traditional under- well-being. With a cultural shift toward recog-
standings of disability and friendship. All people nizing disability as a natural part of human
with intellectual and developmental disabilities diversity, people with intellectual and develop-
have innate capacities for a range of meaningful mental disabilities may be acknowledged for the
relationships that can be actualized when orga- contributions they make as friends to the social
nizational structures that contribute to segrega- well-being of others and the greater social good.
tion in residential, employment, education, and
leisure domains are removed and structures that
support regular, interpersonal interactions around References
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and family members can further support people Ali, A., Hassiotis, A., Strydom, A., & King, M. (2012).
with intellectual and developmental disabilities Self-stigma in people with intellectual disabilities and
courtesy stigma in family careers: A systematic
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review. Research in Developmental Disabilities, 33
strengths-based perspective to build commu- (6), 2122–2140.
nicative competencies, promote acquisition of Alverson, C., Lindstrom, L., & Hirano, K. (2015). High
social knowledge about self and others, and school to college: Transition experiences of young
adults with autism. Focus on Autism and Other
establish positive identities that do not patholo- Developmental Disabilities.
gize disability. The goal of these efforts must not Amado, A., Stancliffe, R., McCarron, M., & McCallion,
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Author Biographies
Laura T. Eisenman, Ph.D. is an associate professor in the He oversees community-based model demonstration pro-
University of Delaware’s School of Education and affiliated grams, including an inclusive higher education program for
with the University’s Center for Disabilities Studies as faculty students with intellectual disabilities. His research interests
coordinator for the undergraduate disability studies minor. include postsecondary transition for students with disabilities,
Her research interests include understanding the social and social relationships and community involvement among
community experiences of young adults with intellectual and adults with disabilities, and factors impacting the experience
developmental disabilities, exploring the meaning of disabil- of raising a child with a disability. Brian has a background in
ity in educational contexts, and integration of disability clinical psychology and previously worked as clinical director
studies perspectives into interdisciplinary professional pro- for an interdisciplinary autism clinic.
grams. She is on the editorial boards of Career Development Marisa Kofke, M. Ed. is a doctoral student specializing in
& Transition for Exceptional Individuals and Review of Sociocultural and Community-based Approaches to Educa-
Disability Studies. She previously worked as a counselor and tion at the University of Delaware. She has interests in the
administrator in community programs for adults with areas of postsecondary programming for young adults with
disabilities. disabilities, disability studies, and transformative learning
Brian Freedman, Ph.D. is the associate director of the theory. Her current research focuses on transition experiences
University of Delaware’s Center for Disabilities Studies and for autistic adolescents and young adults, social skills
an assistant professor in the university’s School of Education. development in schools, and disability identity.
 The Role of Positive Psychology
in Interpersonal Decision Making 11
Ishita Khemka and Linda Hickson

Traditionally, research in the disability field has situations. There is no doubt that decision mak-
focused on remediating deficits rather than ing plays a pivotal role in all areas of people’s
building on strengths. Historically, “people with lives and that increasing decision-making com-
disabilities were viewed as objects to be fixed, petence can have a profound positive impact. For
cured, rehabilitated and, at the same time, pitied” example, people are routinely called upon to
(Wehmeyer, 2013, p. 5). However, as reflected make potentially life-changing decisions in
throughout this text, there is a shift from a interpersonal (e.g., whom to trust) as well as
medical model toward a social–ecological or personal situations (e.g., how much money to
person–environment fit model of disability. spend). The focus of the present chapter is pri-
According to the social–ecological model, a marily upon interpersonal decision making,
disability is viewed as a mismatch between per- which is central to maintaining a positive quality
sonal capacities and environmental demands of life but which poses particular challenges to
(Shogren, 2013), rather than as a defect to be people with intellectual and developmental dis-
fixed or a disease to be cured. The social–eco- abilities. Interpersonal decisions are at the crux of
logical perspective encourages the development the well-documented social vulnerability of
of systems of supports that build on a person’s people with intellectual and developmental dis-
strengths to improve their quality of life and abilities (Cappadocia, Weiss, & Pepler, 2012;
promote optimal functioning. A focus on pro- Christensen, Fraynt, Neece, & Baker, 2012;
moting decision making is reflective of this Hickson & Khemka, 2016; Hickson, Khemka,
changing perspective. Golden, & Chatzistyli, 2008; Rose, Espelage, &
Decision making is of interest to many Monda-Amaya, 2009). Research to better
divergent fields, including economics, business, understand and strengthen interpersonal decision
law, health, and psychology. Decision-making making offers a potential avenue to reducing
research tasks have ranged from abstract labo- social vulnerability and increasing positive
ratory tasks to real-life personal and interpersonal quality of life. For nearly 20 years, we have
focused our research on finding ways to enable
people with intellectual and developmental dis-
I. Khemka (&) abilities to have as much choice and control as
Education Specialties, School of Education, St. possible in their lives. We believe that enabling
John’s University, Sullivan Hall Queens Room 412, them to acquire a repertoire of effective inter-
Queens, NY 11439, USA
personal decision-making skills can provide them
e-mail: [email protected]
with a powerful tool for building positive, satis-
L. Hickson
fying friendships and intimate relationships as
Teachers College, Columbia University, New York,
USA well as for ensuring their own personal safety
e-mail: [email protected] and preventing harm.

© Springer International Publishing AG 2017 145

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_11
146 I. Khemka and L. Hickson

To design interventions to enable people with However, other interpersonal decisions involve
intellectual and developmental disabilities to threats, coercion, or overt abuse and carry con-
acquire a repertoire of effective decision-making siderable risk to the decision-maker. The studies
skills, it is necessary to (a) adopt a model of considered in this chapter cover a wide range of
decision making that encompasses the compo- types of healthy and abusive situations, including
nent processes involved in different types of sexual, physical, and verbal/psychological abuse.
decisions and (b) to understand the likely Each of the three types of abuse also can occur in
strengths and vulnerabilities that may influence a variety of situational contexts, including
how a person with intellectual and developmen- financial exploitation, cyber abuse, and
tal disabilities will approach a particular disability-specific abuse. Another type of situa-
decision-making situation. The present chapter tion associated with the social vulnerability of
begins with a brief discussion of our Pathways people with intellectual and developmental dis-
Model of Decision Processing (Hickson & abilities involves negative peer pressure or
Khemka, 2013) followed by a description of coercion. This type of decision-making situation
some key decision-making research and inter- can occur in a variety of situational contexts,
vention studies aimed at providing adults and including situations that involve threats to
adolescents with intellectual and developmental physical safety by pressuring the decision-maker
disabilities with a useful repertoire of to engage in risky behavior, threats to health by
decision-making skills. This chapter concludes pressuring the decision-maker to use alcohol,
with suggestions for future directions for tobacco, or other drugs (ATOD), risks of getting
research and practice in decision making. into trouble at school or work by pressuring the
decision-maker to shirk a responsibility, or risk
of getting into trouble with the law by engaging
Pathways Model of Decision in stealing or other criminal behavior.
Processing In our own research to date, we have aimed to
deepen understanding of the requirements for
Our Pathways of Decision Processing model (see effective decision making in healthy relationship
Hickson & Khemka, 2013 for a detailed situations and positive peer interactions as well
description) is a working model that can be as effective decision making in abusive situations
applied across a range of interpersonal and negative or coercive peer interactions. Our
decision-making situations. The model builds research tasks have typically consisted of brief
upon our past models (e.g., Hickson & Khemka, vignettes based on real-life situations. Respon-
1999, 2001; Khemka & Hickson, 2006) as well dents are asked what the featured decision-maker
as the extensive theoretical literature on decision should do. An overarching goal of our studies is
making. The Pathways model is consistent with to identify interventions and supports to assist
the thinking reflected in the more recent people with intellectual and developmental dis-
dual-process theories (e.g., Kahneman, 2011; abilities to calibrate their selection of decision
Newell, Lagnado, & Shanks, 2015; Stanovich, processing pathways to the specific needs of
2011). situations that they are likely to encounter in their
According to the Pathways model, decision lives.
processing must be considered in light of the In the Pathways model, we set forth four
situational and environmental context that gives alternative decision pathways and highlight the
rise to different types of decisions. Many inter- various factors that may play a role in decision
personal decisions take place in the context of processing along these pathways. These factors
positive, healthy relationships, or social situa- include the basic mental processes of cognition,
tions where risks are minimal or nonexistent. In motivation, and emotion as well as the contex-
these cases, decisions can be made freely tual demands of a particular decision-making
according to personal values and preferences. situation. Further, we recognize that the
11 The Role of Positive Psychology … 147

biological/neurological/developmental character- complex with multiple possible solutions and

istics of the decision-maker are key factors in serious potential consequences. Trisha may need
determining which decision pathway will be to apply a reasoned reflective strategy to consider
selected and how it will be applied in a specific her options in light of their possible conse-
situation. quences and to find the best way to stop the
The Pathways of Decision Processing model abuse in the immediate situation as well as in the
presents the following four alternative pathways future.
illustrated with examples of vignette situations
drawn from our studies:
Pathway 3

Pathway 1 Pathway 3 involves a shift from an initial intu-

itively based (type1) decision process to a rea-
Pathway 1, the intuitive automatic decision pro- soned reflective (type 2) process after
cessing pathway utilized in most everyday deci- self-regulatory mechanisms detect that the situ-
sions, relies almost entirely on intuitive ation requires a more deliberative process and
automatic (type 1) processing (Stanovich, 2011). overrides the initial type 1 process. This may
Type 1 processes are deployed rapidly and occur in interpersonal situations that at first
automatically with little or no effort. They are glance appear benign, but later reveal them-
typically based upon a gist-based representation selves to involve threats or coercion. For
of the situation. For example, in a healthy rela- example, in a seemingly benign cyber situation,
tionship situation, Amanda’s coworker, Marisa, Carlos has been visiting an online forum for
may say to Amanda, “It is really nice to work guitar players who share songs that they like.
with you. Would you like to go out for lunch Then, Juan, another forum user, posts, “Carlos
today?” Most likely, Amanda would be able to must be retarded if he likes that song.” Carlos
use Pathway 1 to make a quick decision based on will likely need to employ a Pathway 3 process,
whether she is free and/or whether she would like involving a shift from an initial intuitive auto-
to go out to lunch with Marisa. matic process with respect to his use of the
online forum to a reasoned reflective
decision-making process to figure out how best
Pathway 2 to handle the cyber abuse consisting of humili-
ating verbal taunt by Juan.
Pathway 2 involves reasoned reflective (type 2)
processing based on a fairly detailed, verbatim
representation of a situation. Type 2 processing is Pathway 4
slow and analytic (Stanovich, 2011). Reasoned
reflective decision processing typically involves Finally, a 4th Pathway can develop over time as
multiple components or steps and requires practice from repeated decision-making experi-
higher-order hypothetical thinking for the gen- ences with a range of situations in a specific
eration and evaluation of alternative courses of domain accumulates. The feedback and experi-
action. Complex situations with serious ence from repeated reasoned reflective decision
long-term consequences often require Pathway 2 processing can build familiarity with alternatives
processing. For example, in the following abuse and their likely consequences in a specific
situation, whenever Trisha’s uncle comes to domain such that, over time, a new pathway of
family parties, he forces Trisha into a bedroom decision processing evolves to create a new type
and touches her private parts. Trisha’s uncle tells of intuitive (type 1) decision process in the form
Trisha not to tell anyone. This situation is fairly of a learned response to be activated from
148 I. Khemka and L. Hickson

memory in a particular type of situation. Emer- Role of Cognitive, Motivational,

gency workers rely heavily on this fourth path- and Emotional Processes
way to build up a repertoire of effective decision in Decision Making
actions that they can draw upon and implement
rapidly in frequently occurring types of emer- It has been long understood that decision making
gency situations (Klein, 1998, 2009). For involves the interaction of cognitive, motiva-
example, in a physical abuse situation, Stewart tional, and emotional processes. As early as 1986,
sometimes argues with his roommate, Doug, Kuhl pointed out that although each of the three
about cleaning their room. Whenever, they argue, processes performs unique functions in decision
Doug pushes Stewart. Assuming that Stewart has making, these processes also interact with each
had considerable experience with roommate sit- other in complex ways to produce decision out-
uations (his own and those of his friends), he comes. Recently, increasingly specific informa-
may have employed a reasoned reflective strat- tion has been emerging about the neural
egy in past situations. After many years of substrates of these processes as a result of the
experience, he may have learned that an effective intensified interest in decision making in fields
way to handle this type of situation is to, first, tell such as neuropsychology and neurodevelopment.
Doug not to push him. Then, if Doug does not Recent neurological evidence supports the exis-
stop, report the situation to his case manager and tence of brain regions that underlie intuitive type
request a change of roommates. Pathway 4 can 1 decision processing (i.e., the amygdala–striatal
only occur to the extent that a decision domain system) and deliberative type 2 decision pro-
follows a regular, predictable pattern. cessing (i.e., the ventromedial prefrontal cortex)
The Pathways model for self-determined, (Reyna & Zayas, 2014). These systems are highly
interpersonal decision making for people with interconnected, and recent evidence suggests the
intellectual and developmental disabilities (see possible importance of a third system in decision
Hickson & Khemka, 2013) can serve as a useful making, the insula, which may modulate the
guide for research aimed at gaining a greater activity in the amygdala-striatal system and the
understanding of decision-making processes as ventromedial prefrontal cortex system to alter the
well as a framework for the intervention and perceived reward value of potential decision
assessment parameters involved in building outcomes (Reyna & Zayas, 2014).
capacity and opportunity for individualized In our research on interpersonal decision
models of supported decision making, a widely making of people with intellectual and develop-
embraced and fast-growing alternative to tradi- mental disabilities, we have begun to explore the
tional, guardianship-based models of decision relative importance of the roles played by cog-
making (Jameson et al., 2015) (see Chap. 17). nitive, motivational, and emotional processes in
It is likely that many people with intellectual different types of decisions. Although the cog-
and developmental disabilities will require sys- nitive challenges inherent in the memory, lan-
tematic training to replace ineffective guage, and information processing demands of
decision-making routines based on their past decision making for people with intellectual and
experience with new decision-making skills and developmental disabilities are apparent, they
strategies that will build on their strengths and necessarily operate in relation to motivational
lead to more positive decision outcomes aligned factors, including personal agency beliefs and
with their goal priorities. The Pathways model goal processes, and emotional and personality
was developed to provide a basis for designing factors in shaping the decision-making effec-
and evaluating interventions aimed at supporting tiveness of this group. It is possible that, although
people with intellectual and developmental dis- motivational and emotional factors can interfere
abilities to acquire a repertoire of effective with effective decision making, they may also
decision-making strategies. have the potential to enhance decision making by
11 The Role of Positive Psychology … 149

compensating for limited cognitive capacity. making in adolescents with intellectual and
Acknowledging that these three variables never developmental disabilities.
operate in isolation, in the following sections we When measured separately for the two groups,
will focus on studies aimed at illuminating their the effective decision-making scores also corre-
relative contributions in particular types of lated significantly positively with language func-
decision-making situations. tioning (ASD: r = .56, p < .01; non ASD: r = .51,
p < .01) and risk perception scores (ASD: r = .86,
p < .01; non ASD: r = .80, p < .01). In addition,
Role of Cognition for adolescents in the ASD group only, a signifi-
cant relationship was observed between effective
In a study examining the decision-making decision making and self-actualized goal orienta-
effectiveness of adolescents with intellectual tion (r = .52, p < .05) and between effective
and developmental disabilities in situations of decision making and IQ (r = .47, p < .05), cor-
peer coercion (Khemka, Hickson, Mallory, & roborating the importance of levels of cognitive
Zealand, 2013), we performed exploratory cor- functioning in decision making. The strong asso-
relational analyses to examine relationships ciation between self-actualized goal orientation
between participants’ effective decision-making and decision making among adolescents with
scores and several cognitive variables (IQ, lan- ASD suggests that higher awareness of adaptive
guage functioning, and risk perception). Lan- goal priorities can help provide the evaluative
guage functioning was measured by composite framework and requisite motivation to approach
scores on the CREVT-2. Risk perception was decision making in a more focused, effective way
measured by responses to a question (i.e., What for these individuals.
could happen if _____ decides to _____ (go
along with the coercion?) asked after the pre-
sentation of each of 12 decision-making vign- Role of Motivation
ettes involving peer coercion. The relationship
between effective decision making and a moti- In our consideration of what constitutes effective
vational variable (self-actualized goal orienta- decision making, we have focused on the need
tion) was also assessed. for people with intellectual and developmental
The correlations were performed first for the disabilities to make independent, self-actualizing,
entire sample of adolescents with intellectual and decisions consistent with their personal agency
developmental disabilities (n = 49) and then beliefs and goal priorities. In essence, the pro-
separately for a subgroup with an autism spec- cess of effective decision making is synonymous
trum disorder diagnosis (n = 18) and for a sub- with the exercise of self-determination by the
group with no autism diagnosis (n = 31). The decision-maker to make a decision in her/his
results provide preliminary evidence of robust, own best interest and reflective of her/his
but varying, contributions of cognitive variables capacity to handle a decision situation. These
to effective decision making for adolescents with considerations suggest an opportunity to influ-
and without autism spectrum disorders. For the ence the decision-making behavior of people
combined sample, strong positive correlations with intellectual and developmental disabilities
were found between effective decision-making by improving the integration of their goal pri-
scores and language functioning scores (r = .54, orities and internal perceptions of control,
p < .01) and correct risk perception scores beyond simply making goal information avail-
(r = .80, p < .01). The high positive correlation able or providing the opportunity to exercise
between risk perception scores and effective control.
decision making (actions to resist peer coercion In a continued exploration of decision making
in this study) points to the likely cognitive con- in interpersonal situations involving peer pres-
tribution of risk awareness to effective decision sure (Khemka & Hickson, 2016), we examined
150 I. Khemka and L. Hickson

the role of personal goal orientation. Forty-nine decision-making responses. Effective

adolescents with intellectual and developmental decision-making action responses included sug-
disabilities (mean age = 15.86 years; mean gestions to make immediate, direct attempts to
IQ = 70.53) were given a goal selection inven- confront the pressuring peer (e.g., verbal refusal,
tory of 18 statements representing a negotiation) or take an action that implied not
self-actualization based goal value system (e.g., going along with the negative peer pressure (e.g.,
How important is it for you to be safe? How seeking help, don’t do it). All other decision
important is it for you to stay out of trouble?) or responses (e.g., decisions to comply with peer
an other-oriented goal value system (e.g., How pressure, to ignore the situation, or incompre-
important is it for you to go along with what hensible responses) were considered to be errors.
others want? How important is it for you to be The ADMS was designed to also include a
liked by your friends?). Respondents were asked within-subjects external goal manipulation vari-
to rate how important each listed goal was to able by varying the goal intentionality of the key
them personally on a Likert scale (always protagonist in the vignettes. The vignettes were
important, sometimes important, never impor- balanced to include equal numbers of no-goal
tant). Based on the mean rating derived for the intentionality statements, goal statements cueing
11 self-actualization based goals, the adolescents for a self-actualizing intent (e.g., Lisa would like
were divided into two groups representing either to keep her job.), and goal statements cueing for
a relatively high (n = 23) or relatively low an other-oriented goal intent (e.g., Brian would
(n = 26) self-actualization-based goal orientation like to please his friend).
system. The results of a t-test (t (47), t = 8.62, A two-way mixed analysis of variance using
p < .01) confirmed that the two groups were type of goal intentionality statement as the
significantly different in their reported ratings for repeated measures variable and the high versus
self-actualization-based goals. low self-actualizing goal orientation groups as
The two groups were then compared on their the between-subjects variable indicated that the
ability to suggest effective decisions in response effect of the goal intentionality statements on
to hypothetical interpersonal situations involving effective decision-making was not significant
negative peer pressure, as measured by the (F (2, 94) = 1.29, p = .65). However, the
Adolescent Decision-Making Scale (ADMS) between-subjects goal orientation factor yielded
(Khemka, Hickson, & Mallory, 2016). The a significant difference (F (1, 47) = 4.35,
ADMS features 12 decision-making vignettes p = .04) with adolescents in the high
depicting situations in school, work, and com- self-actualizing goal orientation group suggesting
munity settings that involve negative peer pres- more effective decisions for handling the nega-
sure to engage in one of the following four types tive peer pressure than their counterparts in the
of risk-taking behaviors (stealing/breaking the low self-actualizing goal orientation group. This
law; shirking a work responsibility; facing study carries important implications for the role
physical danger; engaging in substance use). of internalized goal orientation in the
Each vignette includes a brief three-sentence decision-making process for people with intel-
description of a decision situation featuring a lectual and developmental disabilities. However,
female or male protagonist as the decision-maker the question of whether goal intentionality can be
in a situation of negative peer pressure. Vignettes readily manipulated will require further research.
were read aloud to the student by the examiner,
followed by a decision action question (e.g.,
What is the best thing for ______ to do?)? Role of Emotional and Personality
Responses to the decision action question were Factors
coded as effective if they included any effort to
resist the negative peer pressure, with a total Emotion is another of the basic processes that
maximum possible score of 12 for effective play an integral role in decision making. Early
11 The Role of Positive Psychology … 151

decision theorists typically envisioned the role of found to affect underlying mechanisms of deci-
emotional factors in decision making as a nega- sion making, including strategy use, feedback
tive one. It was often assumed that decision- processing, and reward and punishment sensi-
making effectiveness would decline in situations tivity. The effects were most likely to be detri-
involving high levels of stress or anxiety (e.g., mental in situations involving risk avoidance,
Janis & Mann, 1977; Toda, 1980). Elster (1985) strategy use, or other higher level systems. The
suggested that emotions could overwhelm the mechanisms may include cardiovascular, hor-
rational cognitive processes needed during deci- monal, or neural reactions. In other situations,
sion making. More recently, the prevailing view such as those where the stress is perceived as a
is that the relationship between emotional arousal challenge rather than a threat, cardiovascular
and decision-making effectiveness resembles an reactions may actually foster increased cognitive
inverted U-shape (e.g., Gutnik, Hakimzada, capacity. Starcke and Brand concluded by noting
Yoskowitz, & Patel, 2006). They proposed that, that other factors (e.g., personality, demograph-
under high levels of arousal, the focus of atten- ics) may either confound or mediate the rela-
tion is too narrow and important information may tionship between stress and decision making,
be overlooked. Under low levels of arousal, the suggesting the need for future research.
focus of attention is too broad and may include Two pilot studies by Khemka (2016) involv-
unnecessary irrelevant information. Moderate ing transition-aged adolescents (ages 18–
levels of arousal, on the other hand, are con- 21 years) with intellectual and developmental
ducive to a more balanced allocation of attention. disabilities with more extensive support needs
A somewhat different pattern was observed in a are described here. In the first study, 19 partici-
study by Leprohon and Patel (1995) who studied pants were interviewed to assess their level of
the decision making of nurses in emergency preparedness to handle situations of coercion or
telephone triage situations. Three patterns of threat of coercion involving interaction via the
behavior were observed. In situations of the Internet or phone (cyberbullying). A six-vignette
highest urgency, decisions were made extremely scale presenting hypothetical situations involving
rapidly with nearly 100% accuracy. Situations of risk for cyber abuse was administered to the
moderate urgency were characterized by infor- participants of the college program, and they
mation seeking and requests for clarification. were assessed for their ability to suggest an
This pattern was associated with the lowest level independent, prevention-focused decision
of accuracy. The third pattern, under conditions response (verbally speak up right away, sign off
of lowest urgency, was typified by deliberative the Internet/walk away, stop being friends with
problem solving and planning. Klein’s (2009) the perpetrator) in countering the cyber risk.
research on naturalistic decision making has Participants also completed the Levenson IPC
shown that extensive experience with a decision scales (Levenson, 1973) and scores on the
domain can have a powerful influence on these internality scale (reflecting an internal locus of
patterns. control) were computed. Preliminary data indi-
Understanding that stress and decision making cate that effective decision responding was fairly
are intricately connected, Starcke and Brand limited with the participants recommending an
(2012) conducted a review of studies that had effective decision response only 50.83% of the
investigated the impact of stress on decision time (mean score = 3.05). The remaining
making. The review included studies that looked responses equally spanned asking someone for
at laboratory-induced stress and naturally occur- help or being avoidant (e.g., Just ignore it) or
ring stress. It was clear from the literature that complacent (e.g., Go along with it). Although the
stress affects decision making. However, whether sample was fairly small, a strong correlation
the effect is positive or negative is determined by (r = .52, p < .01) was found between internality
the type of decision-making situation. Both scores and effective decision-making that
laboratory-induced and naturalistic stress were involved resisting coercion. The relationship
152 I. Khemka and L. Hickson

between positive decision outcomes and partici- avoid or accept the status quo, leading to a less
pants’ internal control perceptions corroborate active form of decision responding. Future
the growing evidence supporting the importance studies will need to follow up on examining the
of personal agency beliefs in shaping indepen- role of the different emotional states, especially
dent and self-determined decision-making in situations requiring quick decisions. Since
behaviors. emotions have been described as personal eval-
The 19 participants who responded to the uative states that regulate individuals into taking
decision-making situations of cyberbullying were action, they have important consequences for
also asked to respond to a feeling/emotion behavior and adaptive functioning.
identification question presented at the end of Emotion or feeling identification has been
each vignette situation “How do you think (the assigned a central role in our decision-making
key protagonist in the vignette) might be feeling interventions on the premise that the evaluation
in this situation?” Responses tallied across four of a situation in terms of the affect and arousal it
descriptive emotion identification categories generates sets the intensity of decision-making
showed that responses predominantly fell in one engagement for the decision-maker and has
category of feelings. Almost 75% of the time the consequences for her/his behavior by compelling
adolescents described that the key protagonists the actions required for decision making in that
would experience feelings or emotions of distress situation. As defined by Izard (1984), “the
(e.g., sad, hurt, bad, betrayed) and internal function of an emotion for an individual is evi-
devaluation (e.g., ashamed, embarrassed). Other denced in the motivational value and action
feelings identified included feeling angry or tendency that stem from the quality of con-
being mad 12.57% of the time; feeling anxious, sciousness that characterizes the ‘felt emotion.’
scared, or nervous for 10.78% of the time. Pos- The primary social functions of emotion are
itive feelings were identified a negligible 3.59% (a) signaling something of the expresser’s feel-
of the time. Although no formal analysis was ings and intent, (b) providing a basis for certain
undertaken to explore how participants’ evalua- inferences about the environment, and (c) foster-
tion of the decision situations, in terms of emo- ing social interactions that can facilitate the
tions, impacted their decision choices, the development of interpersonal relationships”
emotions identified do reflect participants’ (p. 18). In keeping with the notion that each
understanding and feelings about the situations different emotion brings a different quality of
and thereby their immediate coping with the motivation resulting in different behavioral
situations. The dominant distress-based emotions alternatives, we have in our decision-making
observed indicate a high level of consistency in intervention efforts with people with intellectual
the participants’ views of feelings associated with and developmental disabilities focused on
interpersonal situations involving coercion enhancing recognition and understanding of
through cyberbullying and depict a high emotions that would trigger adaptive responses
emotion-focused approach to coping that entailed in a decision situation, allowing the
a low sense of personal control and agency in decision-maker to adopt a more task-approaching
decision situations involving others. Only rather than task-avoiding approach to a
12.57% of the time did participants endorse decision-making situation, leading to an overall
emotions of feeling angry or mad that would more self-regulated and adaptive functioning
suggest possible action-focused behavioral decision-making style.
responses to the coercive situations. As described In the second pilot study, the ability of 16
by Izard (1984), the emotion of anger “mobilizes adolescents with intellectual and developmental
energy for physical action as well as confidence disabilities to suggest prevention-focused deci-
in one’s powers” (p. 18). In contrast, the high sions that involved independently and verbally
levels of distressed inward feelings reported by confronting the perpetrator to act to stop the
the participants suggest the motivation to either abuse from happening was measured using a
11 The Role of Positive Psychology … 153

12-vignette scale presenting hypothetical situa- cyberbullying and self-esteem was not clear (i.e.,
tions of abuse or a threat of abuse (sexual, whether cyberbullying results in lower
physical, or verbal abuse). A repeated measures self-esteem or low self-esteem increases vulner-
analysis of variance was used to compare ability to cyberbullying), there is convincing
decision-making performance of the participants evidence that self-esteem and possibly other
in three types of abuse situation. An overall main related personality variables play a critical role in
effect (F (2, 30) = 4.20, p = .025) for type of how adolescents shape their responses to situa-
decision situation was obtained with post hoc tions involving coercion through the use of
analyses, indicating that the participants were technology. Previous research (Hickson &
least likely to verbally speak up and resist in sit- Khemka, 1999; Khemka & Hickson, 2000) has
uations involving verbal abuse (mean = .56, emphasized the relationship between self-related
SD = .73) than in situations of sexual abuse variables, specifically locus of control beliefs,
(mean = 1.31, SD = 1.01) or physical abuse and decision-making effectiveness in interper-
(mean = 1.50, SD = 1.21). Prevention-focused sonal situations for people with intellectual and
decision making, involving independent, developmental disabilities. Khemka’s (2016)
empowered, verbally resisting actions (Say No; pilot study results also underscored a positive
Speak up and say stop.), was observed only correlation between internal locus of control
28.16% of the time across the three types of beliefs and effective decision making in response
situations (mean = 3.38, SD = 1.86), revealing to cyberbullying by transition-aged adolescents
severe limitations in self-protective decision- with intellectual and developmental disabilities.
making preparedness. The within-subjects dif- In light of these findings, the role of self-related
ference, with verbal abuse situations being most variables, in mediating motivational and cogni-
problematic for effective decision making, has tive reactions to decision-making situations,
been observed in our previous studies (e.g., appears to merit further study.
Khemka & Hickson, 2000) and suggests that Future studies to isolate the impact of indi-
people with intellectual and developmental dis- vidual personality variables, such as self-esteem,
abilities find it easier to make effective decisions locus of control, empowerment, self-
when consequences of actions are more obvious determination, on the decision-making behav-
(e.g., someone hurting your body as in sexual or iors of people with intellectual and develop-
physical abuse) than when the coercion is more mental disabilities are required so that the
subtle or implied (e.g., someone denigrating or underlying personality variables can be fully
shouting at you as in verbal abuse). addressed during decision-making training as
Although a large body of literature exists integral elements of the decision-making process.
concerning the impact of self-related variables This is perhaps even more pertinent to people
(e.g., self-esteem, self-efficacy, internal attribu- with intellectual and developmental disabilities
tion beliefs) on academic performance and a host effectively handling decision-making situations
of other task performance behaviors, including of coercion involving cyberbullying where the
response to traditional bullying (e.g., Bandura, impact on the individual is largely relational or
1993; Findley & Cooper, 1983; Radliff, Wang, & psychological, and perhaps linked more directly
Swearer, 2015), research exploring the relation- with perceptions of self. Promoting positive and
ship of such key constructs to cyberbullying healthy perceptions of self is critical to the
experiences and decision making is fairly recent. overall self-determination of people with intel-
Patchin and Hinduja (2010) found a statistically lectual and developmental disabilities, especially
significant moderate relationship between low during the critical period of adolescent develop-
self-esteem and experiences with cyberbullying ment, where an adolescent’s perceptions and
in a large random sample of middle school stu- acceptance of self can direct personal trajectories
dents. In this study, although the temporal of growth toward lower or higher
ordering of the relationship between self-determination and independent decision
154 I. Khemka and L. Hickson

making. In addition to enhancing dispositions avoidant decision style, idiosyncratic goal prior-
toward more internal perceptions of control, it is ities, lack of behavioral flexibility, and restricted
apparent that the environments and opportunities interests) and emotional factors (e.g., limitations
for people with intellectual and developmental in processing emotional cues and emotion
disabilities need to be better structured and sup- regulation).
ported to help induce and maintain positive Research with people with intellectual dis-
perceptions of self (Wehmeyer, 2013). ability, mainly adults with mild and moderate
Although we have begun to examine some of levels of impairment, has indicated various
the non-cognitive variables (e.g., locus of con- shortcomings in their decision-making effective-
trol, goal orientation) in our studies of decision ness, relative to the performance of adults with-
making in adolescents and adults with intellec- out disabilities. Most of the studies point to
tual and developmental disabilities, we people with intellectual disability having diffi-
acknowledge that responses to a decision-making culty in comprehending decision situations,
situation can be influenced by a gamut of applying a systematic decision-making process,
developmental and personal trait factors such as generating alternative choice options, or failing
self-concept, impulsivity, friendship networks, to anticipate possible negative consequences.
and social belonging, all of which can pose (Castles & Glass, 1986; Healey & Masterpasqua,
challenges especially during adolescence. Con- 1992; Hickson & Khemka, 1999; Jenkinson &
sideration of the impact of each of these variables Nelms, 1994; Smith, 1986; Tymchuk, Yokota, &
on the decision-making behaviors of people with Rahbar, 1990; Wehmeyer & Kelchner, 1994). In
intellectual and developmental disabilities is situations of decision making involving victim-
clearly warranted. ization or potential risk of injury or loss, people
with intellectual disability tend to show impul-
sive responding with less effective,
Disability-Specific and Age-Specific self-protective decision making with greater
Patterns of Decision Making risk-taking behaviors that makes them highly
vulnerable to victimization and harm (Khemka &
In addition to the overall decision-making diffi- Hickson, 2000; Khemka, Hickson, Casella,
culties posed by the social and cognitive limita- Accetturi, & Rooney, 2009). Research that has
tions of people with intellectual and examined decision making across a wide range
developmental disabilities, there is evidence of of personal decisions including forecasting of
disability-specific difficulties that can differen- monetary rewards, giving consent, and making
tially affect patterns of decision making. Based medical or legal decisions (e.g., surgery, court
on a review of the available literature, Hickson testimony) (e.g., Gunn, Wong, Clare, & Holland,
and Khemka (2014) identified factors that have 2000; Luke, Clare, Ring, Redley, & Watson,
been differentially associated with 2012; Murphy & Clare, 2003; Willner, Bailey,
decision-making difficulty in individuals with Parry, & Dymond, 2010; Wong, Clare, Gunn, &
intellectual and developmental disabilities. Some Holland, 1999; Wong, Clare, Holland, Watson,
of the factors that were uniquely associated with & Gunn, 2000) validates that people with intel-
people with intellectual disability included cog- lectual disability experience difficulty in evalu-
nitive factors (e.g., intelligence, comprehension, ating and predicting immediate and long-term
and ability to forecast rewards), motivational consequences of a particular risky decision action
factors (e.g., personal agency beliefs), and emo- and tend to choose behaviors that are high in
tional factors (e.g., ability to identify the emo- immediate subjective desirability or excitement,
tions and intentions of others). Factors that have but that may carry the potential for injury or loss.
been uniquely associated with decision-making This raises concern about their ability to weigh
difficulty in individuals with autism spectrum short-term versus long-term outcomes in com-
disorders included motivational factors (e.g., plex social interpersonal situations that involve
11 The Role of Positive Psychology … 155

coercion and to navigate these environments chosen box. The performance of the two groups
successfully and make decisions in their own did not differ in the predictable condition in the
best interest. Information processing capacity is nonsocial context. However, the participants with
also a pervasive issue for individuals with intel- autism spectrum disorders had more
lectual disability. In particular, this can interfere decision-making difficulty relative to the
with their ability to meet the demands for sus- non-disability group in the unpredictable condi-
tained hypothetical thinking involved in reasoned tion and in the social context. Robic et al. con-
reflective decision making (e.g., Hickson & cluded that both the social nature of the
Khemka, 2014). environment and its unpredictability can cause
Recent studies focusing on people with autism decision-making difficulty for people with autism
spectrum disorders have identified several pat- spectrum disorders. They suggested that people
terns of the decision-making styles. Alerted by with autism spectrum disorders could be taught
Luke et al. (2012) that people with autism the regularities of both social and nonsocial
spectrum disorders often try to avoid making domains.
decisions because they find decision making Levin et al. (2015) reported a pilot study
exhausting, Brosnan, Chapman, and Ashwin examining the decision-making competence of a
(2014) compared adolescents with and without group of high-functioning, college-aged students
autism on a jumping-to-conclusions task. Unlike with autism spectrum disorders relative to a
previously tested individuals with psychosis, comparable-aged group without disabilities. Both
adolescents with autism spectrum disorders groups completed a battery of measures tapping
showed little tendency to jump to conclusions various aspects of decision making. Performance
during decision making. In fact, they showed a of the two groups was comparable on many of
pattern of careful, circumspect reasoning where the traditional measures of decision-making
they gathered more data prior to deciding relative competence. They found that the groups did
to adolescents without autism. Although this differ significantly in decision style. Young
tendency could slow down and interfere with adults in the autism spectrum disorders group
effective decision making in healthy interper- were less inclined to use and less successful at
sonal situations where an automatic intuitive using intuitive impressions and feelings to make
strategy would be sufficient, it could prove to be decisions than were individuals in the
an asset in more complex or threatening situa- non-disability group. The groups did not differ in
tions where a reasoned reflective strategy is reliance on and ability to use rational/deliberative
called for. thinking in making decisions. The autism spec-
Robic et al. (2015) scrutinized the trum disorder group also made fewer risky
decision-making performance of a group of choices and was less likely to endorse behaviors
adults with autism spectrum disorders relative to that violated social norms than the non-disability
that of adults without disabilities in a social group.
versus nonsocial environment in a predictable Khemka et al. (2013) compared adolescents
versus unpredictable task context. The study with an autism spectrum disorders diagnosis as
utilized a laboratory task in which participants indicated on IEP records (n = 18) with their
were asked to choose one of two boxes. On each counterparts in the same educational setting with
trial, one box was rewarding and one was not. In no such diagnosis (n = 31) on a decision-making
the predictable condition, the probability of task consisting of situations involving peer
winning was 75% for one box and 25% for the coercion. Diagnoses of the adolescents in the
other. In the unpredictable condition, the proba- non-autism spectrum disorders group included
bilities associated with the boxes were unstable. intellectual disability, speech/language disorder,
In the nonsocial cue condition, the cue was an and learning disabilities. Both groups attended
arrow. In the social cue condition, the cue was a self-contained, special education classrooms in
short movie with an actor who looked at the public schools in the NYC area and did not differ
156 I. Khemka and L. Hickson

significantly on their mean IQ score or age. The situations highlights the challenges that adoles-
adolescents responded to the set of 12 hypo- cents with intellectual and developmental dis-
thetical decision-making vignettes measured on abilities might face in anticipating risks, and
the ADMS and were assessed for their ability to therefore the consequences of their decisions,
effectively and independently resist negative peer in situations where the risk is implicit (as in
pressure in interpersonal social situations pre- going with an unfamiliar neighbor) and not
senting four different types of risks: (1) pressure obvious. The observed difficulties in exercising
to engage in alcohol, smoking, or drug use self-determined, effective decision making for
(ATOD use); (2) pressure to shirk job responsi- adolescents with intellectual and developmental
bilities at the urging of a friend; (3) pressure to disabilities, especially those with an autism
break the law and steal something at work; and spectrum disorders diagnosis, are likely to neg-
(4) pressure to risk physical safety by going with atively impact how they navigate peer situations
an unfamiliar/unknown person. The situations and how well they are able to access the social
targeted for study had been validated by teachers benefits and peer networks available within
and counselors at the participating schools as inclusive settings.
being relevant to their daily social lives with The decision-making differences cannot be
peers and often posing difficulties for these explained by cognitive differences between the
young adolescents. In particular, the situations two groups as they were equivalent to IQ and
involving safety risk were considered to be their language functioning. The results clearly
especially challenging for the students with aut- indicate the presence of other non-cognitive
ism spectrum disorders who tend to be eager to intervening variables, possibly emotional and
please others and can to be lured easily by biological/personality variables that might have
strangers to follow them. A mixed analysis of affected the decision making of the two groups of
variance with type of decision situation as the adolescents differentially. For instance, Rieffe,
within-subjects factor, and autism spectrum dis- Camodeca, Pouw, Lange, and Stockmann (2012)
orders versus non-autism spectrum disorders as compared young adolescents with autism spec-
the between-subjects factor was computed. trum disorders with a control group of typically
Significant main effects were found for both developing children to examine the role of basic
disability type (F (1, 47) = 8.33, p < .01) and emotions in victimization and bullying and found
type of situation (F (3, 141) = 3.13, p < .05), that compared to the control group, adolescents
with no significant interaction effect. Adolescents with autism spectrum disorders exhibited higher
with autism spectrum disorders performed sig- dysregulation of anger which was associated
nificantly lower (mean = 5.78) on effective with more victimization and bullying. Given the
decision making, which indicated resisting peer marked differences in social and behavioral
pressure, than those without autism spectrum abilities of adolescents with autism spectrum
disorders (mean = 8.90). Both adolescents with disorders in comparison with their counterparts
and without autism spectrum disorders exhibited without disabilities and peers with other devel-
lower levels of effective decision making in situ- opmental disabilities, a broader gamut of per-
ations of safety risk (42.75% effective respond- sonal variables and their inputs to decision
ing) than in situations that involved pressure to making behaviors is worth considering in future
engage in ATOD use (52.5% effective respond- studies. Specifically, in situations of peer pres-
ing) or situations that involved pressure to shirk sure or coercion, decision making by people with
responsibility at work (52% effective respond- autism spectrum disorders might be impacted by
ing). Performance with situations that involved their atypical interests and intense emotional
stealing at work (46.5% effective responding) did and/or behavioral reactivity, adding to their vul-
not differ significantly from the other situations. nerability to becoming easy targets for victim-
This specific pattern of differences based on the ization (Matson & Nebel-Schwalm, 2007).
type of risk/peer pressure in the decision Assertive and direct communication with peers
11 The Role of Positive Psychology … 157

during decision making in interpersonal situa- Dramatic changes in decision processing take
tions is essential, especially when a risk of vic- place during adolescence which warrant special
timization is present. People with autism attention (e.g., Chein, Albert, O’Brien, Uckert, &
spectrum disorders might be substantially limited Steinberg, 2011). Steinberg (2008, 2010), basing
due to their communication and social impair- his ideas on emerging evidence from develop-
ments, and abilities to interpret social cues and mental neuroscience, has proposed a
assess risk in peer interactions. Van Roekel, dual-process theory to explain some of these
Scholte, and Didden (2010) studied 230 adoles- changes. It appears that two different brain sys-
cents with autism spectrum disorders, finding tems that play a key role in decision making
that adolescents who more frequently misinter- mature at different time during the adolescent
preted bullying situations as non-bullying expe- period. Changes in the brain’s socio-emotional
rienced higher rates of victimization, as reported system occur at the time of puberty and are
by self and teachers. Other studies (Frith & Hill, associated with a sudden increase in risk taking
2004; Loveland, Pearson, Tunali-Kotoski, Orte- in conjunction with increased reward-seeking,
gon, & Gibbs, 2001) have shown that children especially in the presence of peers. Risk taking
with autism spectrum disorders struggle with eventually declines between late adolescence and
perspective-taking and interpreting cues in social adulthood as the brain’s cognitive regulatory
situations. This tendency occurs especially when system matures. Blakemore and Robbins (2012)
situations are complex and contain multiple described the reward system associated with risk
verbal and nonverbal cues. taking as being hypersensitive to rewards in early
To date, very few studies have examined the adolescence. In contrast, they refer to the
decision-making skills of people with autism slow-developing system of impulse control and
spectrum disorders in complex and uncertain response inhibition. They go on to suggest that
social contexts. Ruble, Willis, and Crabtree emotional and social factors may be important
(2008) found that children with autism spectrum modulators of decision making during adoles-
disorders had difficulty generating alternatives cence. According to Crone and Dahl (2012),
during decision-making tasks. These findings are neuroimaging studies indicate that adolescent
possibly due to autism-related behavioral rigidity risk taking and other dangerous behaviors are
and inflexibility. DeMartino, Harrison, Knafo, linked to changes in social-affective processing.
Bird, and Dolan (2008) reported that young They assert that the primary task of adolescence
adults with autism spectrum disorders have dif- is to achieve mature levels of social competence.
ficulty incorporating emotional cues into their Crone and Dahl point out that this process is
decision processing. This finding adds to earlier intertwined with adjustments in goal priorities.
evidence (i.e., DeMartino, Kumaran, Seymour, They suggest that these changes may confer
& Dolan, 2006; Kahneman & Frederick, 2007) benefits, along with the vulnerabilities, to the
that the inability to adequately process emotional extent that adolescents have the capacity to
cues is related to a neurobiological deficit. Youth quickly shift goal priorities.
with autism spectrum disorders likely experience There is considerable evidence to confirm that
difficulty capitalizing on emotional cues in adolescents engage in risk-taking decisions,
complex and uncertain social contexts. Peer despite well understanding the consequences of
victimization might subsequently limit intuitive their actions and the risks involved. Adolescents
and self-regulatory decision-making processing. demonstrate the ability to estimate some of their
Core deficits in social communication and risks in real-life situations quite reasonably
behavioral rigidity combine with a high preva- (Fischoff et al., 2000; Reyna & Adam, 2003;
lence of worry- and anxiety-related symptoms in Reyna & Farley, 2006). However, they will often
individuals with autism spectrum disorders make choices not by rationally calculating rela-
(Ghaziuddin, 2002; White, Oswald, Ollendick, & tive risks and consequences of their behaviors
Scahill, 2009). but by weighing their choices heavily on their
158 I. Khemka and L. Hickson

individual subjective experiences, such as feel- self-protective decision-making skills to women

ings and social influences (Steinberg, 2004, with intellectual and developmental disabilities
2007). relative to a randomly assigned control group
Given the complexities of disability-specific (Khemka et al., 2005).
influences on decision making and their potential Subsequently, the ESCAPE-DD version of the
interactions with the profound age-related chan- curriculum (Khemka & Hickson, 2008) was
ges that take place during adolescence, special developed to extend its applicability to males as
consideration is required in designing well as females with intellectual and develop-
decision-making interventions for adolescents mental disabilities. It was evaluated in a study
with intellectual and developmental disabilities involving 58 women and men with mild and
to make sure that they are carefully calibrated to moderate intellectual and developmental dis-
their specific and changing needs. abilities (Hickson et al., 2015). Participants were
randomly assigned to either an intervention
group, which received ESCAPE-DD, or a
Interventions to Support Positive wait-list control group, which was given delayed
Decision-Making Outcomes access to the curriculum upon completion of
with Adults with Intellectual posttesting. Posttests consisted of six
and Developmental Disabilities decision-making vignettes depicting situations
involving sexual, physical, and verbal abuse.
In an effort to find ways to strengthen After each vignette was read to them, participants
decision-making effectiveness in people with were asked the following decision-making
intellectual and developmental disabilities, we question: What should (name of protagonist)
have conducted several intervention studies. do? Responses were considered to reflect effec-
With a focus on adults with intellectual and tive decision making if they indicated an attempt
developmental disabilities, we developed and to seek safety through independent action or by
evaluated a series of decision-making/abuse- seeking help. Participants in the intervention
prevention curriculum interventions to deter- group produced significantly more overall
mine whether people with intellectual and effective decision-making responses than did
developmental disabilities can acquire delibera- participants in the control group. Overall,
tive decision-making strategies and the ability to approximately 84% of the intervention
distinguish situations that require their use group’s posttest responses constituted attempts to
from situations that can be handled successfully seek safety, while only 63% of the control
with an automatic intuitive approach (Hickson, group’s posttest responses represented such
Khemka, Golden, & Chatzistyli, 2015: Khemka, attempts.
2000; Khemka, Hickson, & Reynolds, 2005). The ESCAPE-DD curriculum consisted of 12
Khemka (2000) initiated this line of research small-group instructional lessons and six support
by designing a cognitive/motivational interven- group sessions. The curriculum was designed to
tion that was highly effective at improving the address the interplay among the cognitive,
interpersonal decision making and locus of con- motivational, and emotional processes involved
trol performance of a group of women with in decision making. Unit 1 (Lessons 1–5)
intellectual and developmental disabilities. The focused on concepts that distinguished abusive
performance of the women in the intervention from healthy relationships and emphasized the
group was superior to that of women who had importance of three safety goals: (1) be inde-
been randomly assigned to a group whose pendent, (2) be safe now, and (3) be safe later.
training focused only on cognitive skills or to a Unit 2 (Lessons 6–12) focused on modeling and
control group. Based on Khemka’s intervention, providing guided practice with a four-step deci-
the initial version of the ESCAPE curriculum was sion making strategy for handling abuse situa-
developed and shown to be effective at teaching tions: (1) PROBLEM: Is there a problem?;
11 The Role of Positive Psychology … 159

(2) CHOICES: What are the possible choices?; “satisficing” strategy, rather than an exhaustive
(3) WHAT IF: What could happen if? (check search strategy, for generating possible alterna-
each choice with the 3 goals); and (4) DECI- tive choices. Participants are asked to generate
SION: What should _____ do in this situation? only a single choice (alternative) prior to going
In an effort to better understand how ability to on to Step 3, (3) CONSEQUENCES: Would the
apply the four strategy components related to choice meet the 2 safety goals: Safe now and
decision-making outcomes, we performed cor- Safe later? In Step 3, participants are asked to
relations between mastery scores for each of the check their single choice to see whether it meets
four component steps and posttest safe-now both safety goals. If yes, they can go on to Step
decision-making scores, which measured the 4. If no, they are asked to think of another pos-
extent to which the recommended decision action sible choice, repeating Steps 2 and 3. Finally, in
indicated an attempt to avoid or stop the abuse by Step 4, (4) DECISION: Decide how to act upon
seeking immediate safety. We found a significant the selected choice, participants are asked to state
correlation with posttest safe-now scores for only their decision in a way that shows how it meets
the third component step, which consisted of both goals.
considering the extent to which the possible The modifications in the ESCAPE-NOW
consequences of each choice would meet the decision-making strategy are consistent with
three goals. This finding was consistent with a decision-making research and theory, indicating
suggestion by Stanovich (2011) that the hypo- that most decisions involve either rapid, intuitive
thetical thinking required for evaluating the processes, or in the case of deliberative pro-
possible consequences of alternative choices cessing, trying the first alternative that seems
would likely be impaired in those with cognitive promising (satisficing) and considering a 2nd
limitations. alternative only if the 1st proves unworkable.
In light of recent theoretical advances and in The rationale for shifting to this new strategy was
keeping with the social–ecological model of to reduce the information processing load for
disability, we have updated and modified the participants likely to have limited processing
decision-making strategy featured in our latest, capacities. For the same reason, the ESCAPE-
recently completed version of the ESCAPE cur- NOW decision-making strategy reduced the
riculum, ESCAPE-NOW (Khemka & Hickson, number of goals from three to two. This more
2015) (www.escapenow.wikischolars.columbia. focused strategy works best when applied in a
edu), so that it is aligned more closely with the familiar, predictable domain. ESCAPE-NOW
strengths and vulnerabilities of intellectual and addresses this issue by building familiarity with
developmental disabilities individuals. The the abusive/healthy relationship domain. Exten-
flowchart used to guide participants through the sive practice is provided with a large number of
four component steps of the decision-making healthy and abusive situations, spanning sexual,
strategy that is the linchpin of ESCAPE-NOW is physical, and verbal abuse in a variety of con-
shown in Fig. 1. The structure of the four com- texts, including Internet-based and financial sit-
ponent steps parallels that of ESCAPE-DD, but uations as well as disability-specific abuse
the specifics of the four steps in ESCAPE-NOW situations where people with intellectual and
are more sharply focused. Step 1 of ESCAPE- developmental disabilities have been particularly
NOW, (1) PROBLEM: Is there a problem of vulnerable.
abuse in this situation? is similar to Step 1 in Furthermore, ESCAPE-NOW was designed to
ESCAPE-DD, but the yes/no response is foster the recognition and adoption of emotions
prompted by questions evoking the feelings likely to lead to adaptive and self-protective
associated with abusive or healthy relationships decision actions. For instance, in the ESCAPE-
accompanied by sad/happy face emoticons. Step NOW curriculum, the lesson entitled “Under-
2, (2) CHOICES: What are the possible choices? standing Healthy and Abusive Relationships”
has been modified in ESCAPE-NOW to reflect a requires the participants to distinguish feelings
160 I. Khemka and L. Hickson

Fig. 1 Decision-making chart (Khemka & Hickson, 2015)

associated with healthy and positive personal cognitive processing of a reaction in response to
relationships (e.g., safe, respected, happy, the experience of the emotion.
relaxed, cared about) from relationships involv- Rehearsal with emotion identification builds a
ing coercion or pressure (e.g., upset, hurt on repertoire of emotional understanding and cues
purpose, angry, worried, afraid). In addition, the participants to reflect on the primacy of the
emotions are tied to coping profiles (helpful to identified emotion, in turn, guiding the motiva-
solve a problem versus not helpful to solve a tional inputs in the decision-making process. It is
problem) to illustrate a gamut of feelings tied to a assumed that over time, the emotional-cognitive
situation to help shift attention from plausible processing that results in the overall under-
task avoidant emotions (e.g.,. getting upset, standing and handling of a decision situation will
feeling ashamed, experiencing sadness) to more become fairly automatic or intuitive, and the
adaptive/task-approaching emotions (e.g., feeling participant will gradually operate along a con-
angry, being annoyed). Further, activities in the tinuum of adaptive emotional states rather than
lesson on “Coping with Abuse and Distress” maladaptive, avoidant states of emotional
build awareness of sensory and bodily arousal responding. In addition to recognition of different
tied to varied emotional experiences. The phys- emotional states, the ability to vary one’s level of
iological changes accompanying emotional emotional reaction according to circumstances is
experiences determine the subjective experience critical for competence, as in some situations
linked with the emotions and in turn serve to (e.g., situations of abuse with high risk), the need
communicate essential information required for for spontaneity and emotional intentionality
11 The Role of Positive Psychology … 161

might be high, in comparison with other situa- Based on preliminary studies affirming that
tions (e.g., conflict with a friend), where a more the decision making of adolescents with intel-
reflective and controlled emotional reaction lectual and developmental disabilities is vulner-
might be more functional. In essence, the able to various coercive tactics (Khemka &
self-regulation of emotions, along with appraisal Hickson, 2006; Khemka et al., 2009; Khemka,
of self in relation to others, is an important Hickson, Zealand, & Mallory, 2011), we devel-
component of effective decision making in oped and evaluated a decision-making curricu-
interpersonal situations. lum for teaching adolescents with disabilities to
Although most of our decision-making train- resist negative peer pressure. The PEER-DM
ing efforts have focused on preparing people with (Peers Engaged in Effective Relationships—
intellectual and developmental disabilities to Decision-Making) curriculum introduces various
effectively handle situations of coercion or abuse, concepts relevant to peer relationships and tea-
we are consistently extending our training to also ches a 4-step strategy for making decisions that
highlight and help individuals build positive, are consonant with two key goals: (1) Stay out of
healthy emotional and motivational states leading trouble and (2) be safe and healthy. The four
to more pro-social behaviors and adaptive social strategy steps include: (1) identifying a situation
functioning and adjustment. This is consistent as a problem, (2) generating possible alternatives,
with the theoretical perspectives associated with (3) considering possible consequences of each
the positive psychology of emotions (see alternative, and (4) choosing a decision course of
Fredrickson, 2001) that posit that positive emo- action. The curriculum, which consists of six
tions enable people to broaden their momentary small-group sessions, uses modeling, guided
thought-action repertoires, in turn increasing practice, and fading to provide numerous
their enduring personal resources, ranging from opportunities to apply the decision-making
physical and intellectual resources to social and strategy with a wide range of peer situations
psychological resources. involving positive and negative peer pressure
(Khemka & Hickson, 2013).
In a recent study to evaluate the effectiveness
Interventions to Support Positive of PEER-DM (Khemka, Hickson, & Mallory,
Decision Making Outcomes 2016), 42 adolescents with disabilities were
with Adolescents with Intellectual randomly assigned to receive the PEER-DM
and Developmental Disabilities intervention or to a wait-list control
group. Posttest measures included responses to
Although reducing the alarmingly high rates of (1) decision action questions, (2) risk perception
abuse of people with disabilities has been a questions, and (3) questions about knowledge of
driving force in our research and intervention peer relationship concepts. Results indicated that
work with adults with intellectual and develop- adolescents who received PEER-DM produced
mental disabilities (see Hickson & Khemka, significantly more correct risk perception
2016), we have begun to explore the potential of responses and more effective decision action
intervening earlier, before abuse patterns have responses to a set of vignettes depicting negative
been established. Our work with adolescents is peer pressure situations than did the adolescents
aimed at supporting the development of positive in the control group. Correct risk perception
relationships and strengthening the ability of reflected the ability to anticipate the possible
adolescents to distinguish healthy relationships consequences of going along with the negative
from negative relationships involving bullying or peer pressure. A significant difference in favor of
coercive peer pressure. Because adolescents are the intervention group was also found on a
known to have a heightened sensitivity to peer knowledge test of peer relationship concepts.
influences, we have focused our initial efforts on These performance patterns were maintained
peer relationships. when the subgroup of adolescents with autism
162 I. Khemka and L. Hickson

spectrum disorders in intervention group decision solution for that situation. Additionally,
(n = 10) and control group (n = 6) were com- efficient decision making involves basic
pared. These findings support the line of research self-evaluation and the ability to initiate and
that has explored the use of cognitive- maintain goal intentions and resulting motiva-
motivational models of decision-making train- tions (i.e., self-regulation). Therefore, the study
ing to increase awareness of social risks and of effective decision-making components
improve self-protective decision making in requires us to bring the whole individual into
response to complex, social decision-making consideration, within the situational demands of
situations involving threats and coercion (see the decision-making context.
Hickson & Khemka, 2014). The systematic decision-making strategies
which are at the core of ESCAPE-NOW (see
Figs. 1 and 2) or PEER-DM (see Figs. 3 and 4)
Application of Four-Step represent variations of the step-by-step sequence
Decision-Making Strategies of decision-making components with key
self-regulatory inputs explicitly identified. Both
In keeping with the premise that individuals explicit strategies have components of visual
approach decision-making tasks by operating representation (e.g., a visual schema for the 4
along different pathways of information pro- steps, cues for emotion identification, arrows to
cessing, leading to alternative approaches to regulate the sequence of choice generation and
decision making and mediated by different evaluation) that offer a visual schema as a scaf-
underlying factors (e.g., cognitive, motivational, fold for easy recall of 4 key steps involved in the
emotional, biological), there is no one way to decision-making process and the primary com-
teach how best to approach a decision-making ponents (e.g., using goals as evaluative standards
situation. However, given that deliberative deci- for choice selection, Does this choice meet …?)
sion making, a metacognitive-based process, that build the self-regulatory skills for imple-
entails distinct phases of problem recognition, menting the sequence of steps. The strategies
generation of alternative choice options, evalua- also allow for an interactive approach to learning
tion of possible consequences of choices, and (e.g., using stickers, checklist options) and
selection of final choice leading to decision extend learning scaffolds in the form of built-in
action and requires a fair amount of prompts for think-aloud, verbal reasoning, and
self-regulation and executive functioning (work- self-instruction. In addition, the application of the
ing memory and impulse control), a ESCAPE-NOW decision-making strategy
strategy-based approach designed to make the involves a role-playing component (see Fig. 2) to
decision process as overt and systematic as pos- provide participants with the opportunity for
sible has been found to be highly effective. We decision application by rehearsing how best to
regard the conscious consideration of alternative act upon a selected choice in a decision-making
choice options and selection among available or situation (What can (the key protagonist) do to
known options based on individual goal stop the abuse right away? What can (the key
expectancies to be a meaningful, effortful act and protagonist) do to make sure that the abuse
as the core of a decision-making process, driven does not happen again?). Embedded in the
by one’s internal agency and implemented or role-playing activity is the reinforcement of
maintained by one’s self-regulatory mechanisms. individual empowerment and impulse control
The form of choosing based on weighing infor- mechanisms, critical to successful and
mation about available choice options, goal self-determined decision responding in a real-life
striving and consequence evaluation, and select- situation.
ing the option that appears most likely to be The strategy described above has been cus-
adaptive in a given situation is viewed as repre- tomized for the context of our intervention work
senting the most effective and self-determined primarily focused on improving decision-making
11 The Role of Positive Psychology … 163

Fig. 2 Decision-making chart with role-playing (Khemka & Hickson, 2015)

preparedness of people with intellectual and process, they will proceed with intuitive, auto-
developmental disabilities in situations of abuse matic decision responding in a more cautious and
or threat of coercion or peer pressure. However, controlled manner. This view has most relevance
the four-step decision-making strategy provides a for individuals, for whom difficulties with exec-
generalized approach for systematically teaching utive function, impulse control and/or elevated
a decision-making process and related skills anxiety, predispose them to more impulsive or
and can be easily extended to other novel hasty forms of decision responding (e.g., Hick-
decision-making tasks or situations. The strategy son & Khemka, 2014).
addresses the overall needs of any deliberate,
effortful decision-making process, including
planning (cognitive and metacognitive struc- New Directions for Research
tures), personal resources (emotional and moti- and Practice in Decision Making
vational resources), and a range of executive
functions, including self-regulation. Given that In as much as individual decision-making com-
much of the time people make decisions ulti- petence exerts powerful influences on the quality
mately by routine, habit, instinct, or automatic of interpersonal relationships, social functioning,
processes (Kay, 2002), it is our belief that self-determination, and ultimately the personal
exposure to reasoned, strategy-based training in agency and quality of life outcomes of people
decision making will provide effective tools to with intellectual and developmental disabilities,
people with intellectual and developmental dis- the continuing study of decision-making pro-
abilities, so that in the event that they do not cesses and the development of evidence-based
apply a reasoned, calculated decision-making approaches for improving decision-making
164 I. Khemka and L. Hickson

Fig. 3 Decision-making chart, Part I (Khemka & Hickson, 2013)

outcomes is a valued priority. Although much fully known and the extent to which these factors
progress has been made in understanding the differentially impact different disability sub-types
nature of decision-making processes for both (e.g., autism spectrum disorders, intellectual
adolescents and adults with intellectual and disability) within the larger group of people with
developmental disabilities, the field is still fairly developmental disabilities needs to be further
nascent. Research evidence substantiates that investigated. Growing understanding of these
across different types of decisions, the underlying aspects of decision processing will provide a
mechanisms spanning cognitive (e.g., IQ, risk more informed basis for designing effective
perception, language functioning), motivational decision-making interventions, differentiated by
(e.g., locus of control, goal orientation), and disability- and age-specific needs and addressing
emotional factors (e.g., emotion recognition, the full breadth of difficulties posed by different
anxiety) systematically influence types of decision-making situations.
decision-making performance. However, the The finding that motivational inputs were
range of these underlying mechanisms is not more important for decision making of people
11 The Role of Positive Psychology … 165

Fig. 4 Decision-making chart, Part II (Khemka & Hickson, 2013)

with autism spectrum disorders than for people protective peer groups for adolescents with aut-
without autism has important implications for the ism spectrum disorders. Given the marked dif-
design of differentiated intervention approaches ferences in the social and behavioral abilities of
by disability type. Further, the need to develop adolescents with and without autism spectrum
differentiated and multifaceted interventions to disorders, a broader study of cognitive, motiva-
address the varying patterns of functioning seen tional, and emotional inputs to decision making
within the autism spectrum disorders population behaviors is required to fully understand the
is evident. Carter et al. (2014) and Sterzing, complexities of decision-making behaviors by
Shattuck, Narendorf, Wagner, and Cooper (2012) disability type and to tailor interventions to
have brought attention to the need for differen- effectively improve preparedness for enhanced
tiation in relation to enhancing social competence decision-making outcomes and social
through effective peer relationships and functioning.
166 I. Khemka and L. Hickson

Based on our research, it is apparent that the situations and needs most relevant to the expe-
continued investigation of decision-making pat- riences of people with intellectual and develop-
terns will require considering the developmental mental disabilities. Further, we are committed to
and situational factors that might impinge on a keeping the curricula updated to reflect new
decision-maker’s goal preferences or their research findings and changing environmental
assessment of a decision situation, thereby and social contexts, as is reflected in our added
influencing the evaluative framework used to focus on studying decision making in situations
interpret possible consequences of an option and of cyberbullying and expanding the dialogue of
choose a course of action. For instance, adoles- self-protective interpersonal decision making to
cents’ decision making might be marked by both resisting negative peer pressure and nego-
risk-taking behaviors, more emotional charge, or tiating positive peer pressure pro-socially.
undue influence of social factors, such as desire Although much of our research work has
for social belonging or wanting to impress a focused on developing evidence-based training
friend, characteristic of the developmental period approaches for improving decision-making skills
of adolescence. In this case, adolescents may be of people with intellectual and developmental
well aware of possible risk consequences and disabilities, we recognize that people with intel-
may possess skills for reasoned decision making, lectual and developmental disabilities are still
but are nevertheless likely to alter their course of often marginalized due to lack of inclusive
decision making and make choices that serve experiences or social support in their schools or
their immediate impulses and conform to social communities and that they often face limited
expectations or a desire for acceptance. Simul- opportunities to develop capacity and gain
taneously, there is growing discussion, suggest- experience with decision making. With the
ing that adolescent experience with risk taking or emerging trend toward supported decision mak-
learning to navigate peer pressure may be adap- ing for people with intellectual and develop-
tive developmental steps to greater self-reliance mental disabilities, opportunities to make their
and useful social behaviors in adulthood (see own important life decisions will inevitably
Smith, Chein, & Steinberg, 2014; Steinberg, expand and will become a key element in
2014). Therefore, the messages or reinforcements improved quality of life for many individuals
(reward vs. punishment) communicated to ado- (Kohn, Blumenthal, & Campbell, 2012). Given
lescents must be developmentally calibrated. this trend, it is likely that our evidence-based
Also, the potential power of positive peer pres- approach for developing effective and individu-
sure in helping adolescents be more persistent, alized training approaches for improving inter-
less anxious, and willing to attempt greater personal decision making can help lay the
challenges is being increasingly acknowledged foundation for the more complex and challenging
(e.g., Wang, 2013). Research on normative decision processing required for adult life deci-
developmental perspectives informs the priorities sions and for building the decision-making skills
for decision-making training, especially for peo- that will allow people with intellectual and
ple with intellectual and developmental disabili- developmental disabilities to engage in success-
ties, who might need concerted support and ful supported decision making.
rigorous instruction for specific skill learning, The focus on self-actualizing goal setting
such as being able to anticipate risks, set personal leading to attainment of positive relationship-
boundaries, or communicate feelings, in com- based outcomes is also supported by past
parison with their counterparts without disabili- research. Higgins (1997) highlighted that fram-
ties, for whom such skills may evolve ing one’s goals in terms of promoting positive
developmentally over time. Our decision-making outcomes versus preventing negative outcomes
curricula (ESCAPE-NOW and PEER-DM) (by setting promotion versus prevention goals)
encompass these perspectives and are differenti- helps goal attainment, as does anticipating
ated further to address the decision-making internal versus external rewards by setting
11 The Role of Positive Psychology … 167

intrinsic versus extrinsic goals (see Ryan & Deci, much to contribute to the success of
2001). Locke and Latham (2002, 2013) urged strength-based models of intellectual and devel-
that goals can lead to better performance when opmental disabilities.
they are stated with precision, listing specific
desired future outcomes, rather than as general
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Author Biographies
Ishita Khemka, Ph.D. is an Associate Professor and the co-author of the ESCAPE curriculum, an abuse prevention
Coordinator of Special Education at St. John’s University. program for adults with intellectual and developmental dis-
Her program of research involves examining effective inter- abilities. Currently, she is focusing on developing
ventions for improving the social interpersonal decision evidence-based methods to support youth with intellectual
making and self-protection abilities of individuals with and developmental disabilities to resist peer victimization and
intellectual and developmental disabilities. Dr. Khemka is the build positive peer relationships.
11 The Role of Positive Psychology … 171

Linda Hickson, Ph.D. is Professor Emerita at Teachers decisions. In collaboration with Dr. Ishita Khemka, Dr.
College, Columbia University. Dr. Hickson’s research has Hickson directed a series of research projects that culminated
focused on finding ways to reduce the social vulnerability of in the development of ESCAPE-NOW, a
individuals with intellectual and developmental disabilities by decision-making/abuse prevention curriculum for women and
increasing their ability to make effective, self-protective men with intellectual and developmental disabilities.
 Exercise, Leisure, and Physical
Well-Being 12
James K. Luiselli

well-being are essential determinants of a posi-

Introduction
tive lifestyle. However, many individual and
group-focused interventions have effectively
Picture the following scenario: Robert, a
addressed these concerns and with promising
24-year-old man with intellectual and develop-
future directions (Luiselli, 2014, 2016b). This
mental disability, lives in a community group
chapter describes the most effective behavioral
home with other similarly diagnosed men and
teaching and support strategies, as gleaned from
attends a vocational training center in a nearby
the extant literature, and demonstrated through
neighborhood. He has limited verbal language
research-to-practice translation.
but communicates using a speech-generating
assistive device. Robert has few interests, pre-
ferring to be alone, occasionally listening to
music in the privacy of his bedroom. He is
Overview of Behavioral Intervention
overweight, refuses to exercise, and avoids any
Most behavioral practices targeting exercise,
planned physical activities with his housemates.
leisure, and physical well-being include objective
Despite the recommendation of his primary care
outcome measurement through direct observa-
physician, Robert does not maintain a healthy
tion, mechanical instrumentation, or combination
diet and mostly consumes “junk” food through-
of both. There are also occasions in which a
out the day. The supervising care-providers at the
person with intellectual and developmental dis-
group home and Robert’s parents are worried
abilities self-records one or more dependent
about his health status, isolate behavior, and poor
measures. Measurement further extends to the
quality of life but have been unable to change
variables that impede exercise, leisure, and
these circumstances for many years.
physical well-being, as well as factors that may
Like Robert, many people who have intel-
support them more desirably. This type of mea-
lectual and developmental disabilities do not
surement is typically accomplished through
exercise, have few leisure outlets, and experience
functional behavioral assessment (FBA) and
physical health problems. This is an unfortunate
functional analysis (FA) (Neidert, Rooker,
situation because exercising regularly, engaging
Bayles, & Miller, 2013). A third common ele-
in leisure pursuits, and achieving physical
ment of intervention is implementing procedures
based on assessment results. Assessment-derived
intervention usually incorporates multiple meth-
J.K. Luiselli (&) ods that are matched to identified functional
North East Educational and Developmental Support influences. Finally, effective intervention must
Center, 1120 Main Street, Tewksbury, MA 01876,
USA consider other programmatic priorities such as
e-mail: [email protected] care-provider training, intervention integrity,

© Springer International Publishing AG 2017 173

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_12
174 J.K. Luiselli

social validity, and post-intervention well-being are not reviewed from the perspective
maintenance. of therapeutic change but instead, the positive
The intervention approaches presented in this effects on health, personal enjoyment, pursuit of
chapter are formulated principally from the dis- happiness, and quality of life.
ciplines of applied behavior analysis (ABA),
behavioral psychology, and social learning the-
ory. Most behaviorally oriented research relies Research Basis for Practice
on single-case experimental designs to evaluate
outcome and control for internal validity of Research with typically developing children,
programmed intervention (Barlow, Nock, & youth, and adults has documented several
Hersen, 2009; Kazdin, 2011). Single-case behavioral intervention procedures for increasing
research methodology also accommodates well and maintaining exercise (Normand, Dallery, &
to the heterogeneous presentation of many peo- Ong, 2015). Much of this work developed direct
ple with intellectual and developmental disabili- observational instruments for coding activity
ties. This idiographic orientation emphasizes levels (Brown et al., 2006; McIver, Brown,
systematic replication of intervention effects to Pfeiffer, Dowda, & Pate, 2009), but also actig-
support the external validity of particular proce- raphy measurement devices such as pedometers,
dures and multiprocedural treatment plans. accelerometers, and heart rate monitors (Sasaki,
Additionally, the research and practice appli- da Silva, da Costa, & John, 2016; Tryon, 2011).
cations represented in the chapter address treat- Other ABA research with typically developing
ment, risk reduction, and primary prevention populations has evaluated procedures to improve
efforts. Most intervention models, in fact, inte- diet and consumption of healthy foods (Horne
grate tertiary, secondary, and primary foci to et al., 2009; Lowe, Horne, Tapper, Bowdery, &
affect symptom reduction and simultaneously Egerton, 2004; Normand & Osborne, 2010).
harness a person’s strengths and abilities for A third area consistent with the focus of this
achieving a more fulfilling quality of life. Nota- chapter is managing compliance with medical
bly, a concentration on secondary and primary regimens and routinely monitoring health status
prevention aligns favorably with principles of —these essential components of preventive
positive psychology. medicine and tertiary care can overcome condi-
Finally, it should be noted that some inter- tions like diabetes, asthma, hypertension, and
ventions in the areas of exercise, leisure, and obesity (Allen & Kupzyk, 2016).
physical well-being have been evaluated as Albeit fewer in number, many of the assess-
purely therapeutic methods. For example, certain ment and intervention procedures directed at
forms of exercise preceding teaching sessions people who were typically developing have also
have been studied as a strategy for reducing been applied in intellectual and developmental
instruction-interfering responses (e.g., stereo- disabilities to foster desirable changes in exer-
typy), inattention, and non-compliance (Oriel, cise, leisure, and physical well-being. The fol-
George, Peckus, & Semon, 2011; lowing sections describe the research base for
Rosenthal-Malek & Mitchell, 1997). Horseback these applications, practice implications, proce-
riding, an enjoyable leisure activity, is sometimes dural variations, and considerations for future
proposed as a therapy for children who have inquiry.
developmental disabilities (Jenkins & DiGennaro
Reed, 2013). Healthy eating to improve physical
well-being also encompasses various elimination Exercise
and supplementation diets purported to treat core
symptoms of autism (Flood, Lynn, Mortensen, & It is widely established that routine exercise and
Luiselli, 2010). However, in this chapter, inter- planned physical activity confers numerous
ventions aimed at exercise, leisure, and physical health benefits (Centers for Disease Control,
12 Exercise, Leisure, and Physical Well-Being 175

2011; Eklund et al., 2012; Yamaki, Rimmer, Parenteau, 2013; Weiss, 2008). This level of
Lowry, & Vogel, 2011). Engaging in support predicts exemplary procedural fidelity
moderate-to-vigorous physical activity (MVPA) when implementing exercise interventions. That
also has a positive effect on mood, is is, care-providers who approve the procedures
stress-reducing, and lessens anxiety sensitivity they are requested to use are likely to implement
(Otto & Smites, 2011). However, many people those procedures consistently and accurately.
with intellectual and developmental disabilities Understanding the challenges to routine
are sedentary, physically inactive, and rarely exercise and planned physical activity is a first
exert themselves strenuously through exercise. step toward successful remediation. Some of the
For example, Rimmer, Riley, Wang, Rauworth, barriers include persistent medical conditions in
and Jurkowski (2004) conducted a survey of people who have IDD and family factors such as
“people with disabilities” and found that 56% of limited financial resources, social isolation, and
the sample reported having no leisure-time exposure to unhealthy living conditions (Bat-
physical outlets. Similarly, Carroll et al. (2015) shaw, 2002; Emerson, 2007; Scheepers, Kerr, &
documented that among adults who had hearing, O’Hara, 2005). Furthermore, people with intel-
vision, cognitive, and motor disabilities, 47.1% lectual and developmental disabilities and their
were physically inactive compared to 26.1% of families often do not have access to information
adults without disabilities. and guidance about the quality of life enhance-
By not exercising and being physically active, ment derived from exercise (Krahn, Hammond,
people with intellectual and developmental dis- & Turner, 2006). Environmental barriers preva-
abilities may develop weight, cardiovascular, and lent in outdoor settings and indoor locations such
respiratory health problems (De, Small, & Bauer, as health clubs further constrain exercise partic-
2008; Mann, Zhou, McDermott, & Poston, 2006; ipation (Rimmer, Riley, Wang, Rauworth, and
Peterson, Janz, & Lowe, 2008; Seekins, Traci, Jurkowski 2004). Difficulties arise, too, when
Bainbridge, & Humphries, 2005). Obesity, in there is limited capacity to extend evidence-
particular, is commonly associated with physical based methods from research-controlled settings
inactivity (Bazzano et al., 2009; Curtin et al., to the natural environments in which people with
2013). Another important finding is that MVPA intellectual and developmental disabilities
among people with intellectual and develop- receive services (Luiselli, 2016a).
mental disabilities may improve self-concept, Only a few publications have surveyed the
cognitive functioning, and community adjust- types of exercise performed by people who have
ment (Gabler-Halle, Halle, & Chung, 1993; Oriel IDD and related neurodevelopmental disorders.
et al., 2011; Rosenthal-Malek & Mitchell, 1997). Lang et al. (2010) conducted a systematic review
These findings argue persuasively for intensified of exercise research among children and youth
research efforts that will identify dependable with autism spectrum disorder (ASD). Sixty-one
interventions and practices for promoting and percent (61%) of studies involved jogging and
sustaining exercise within a most vulnerable running, followed by bike riding, weight train-
population. ing, roller-skating, swimming, and water aero-
An additional element of exercise research in bics. Also focusing on an autism spectrum
intellectual and developmental disabilities con- disorders population, Sowa and Meulenbroek
cerns the social validity (acceptance and (2012) completed a meta-analysis that revealed
approval) of intervention objectives and out- jogging, swimming, horseback riding, weight
comes. Specifically, most parents and training, and walking to be the most common
care-providers of people with intellectual and types of exercise. For children with multiple
developmental disabilities endorse procedures to disabilities receiving intervention to increase
increase exercise and acknowledge the many locomotor skills, Lancioni et al. (2009) found
salutary effects (Glidden, Bamberger, Draheim, that 81% of published studies featured treadmills,
& Kersh, 2011; Luiselli, Woods, Keary, & with proportionately fewer programs using
176 J.K. Luiselli

walkers equipped with microswitch activated learned initially to jump over hurdles that were
sensory stimulation. Of course, the population flat on the floor, then by clearing hurdles at
specificity of these reviews makes it difficult to gradually increasing distances from the floor,
generalize findings to the larger population of culminating in a terminal height of 12 in. After
people with intellectual and developmental reaching this height during training sessions, he
disabilities. ran successfully at the Special Olympics track
Luyben, Frank, Morgan, Clark, and DeLulio event. This study illustrates the highly desirable
(1986) published one of the first ABA studies in objective of minimizing and ideally eliminating
the area of exercise. The participants were three response errors when instituting instructional
adults with intellectual and developmental dis- methods with people who have intellectual and
abilities who were taught to execute a developmental disabilities (Cooper, Heron, &
side-of-the-foot soccer pass. A trainer followed a Heward, 2007).
9-step task analysis with each adult, implement- Luiselli et al. (2013) also targeted Special
ing verbal and manual prompting, prompt-fading, Olympics in a study with two adult men who had
praise, and verbal cues as instructional methods. intellectual and developmental disabilities. Both
This combination of procedures was effective in individuals received behavioral coaching to pre-
teaching the soccer pass in isolation—however, pare them for a 100-m sprint event. Their running
responding reciprocally with a peer or during times were measured in a baseline phase, and
team play was not evaluated in the study. subsequently they were exposed to intervention
Another early ABA study, by Dowa and Dove procedures consisting of goal setting, verbal
(1980), taught swimming to three children with performance feedback, positive reinforcement,
spina bifida (their level of cognitive functioning and video modeling. Compared to baseline per-
was not specified in the study). “Swimming formance, the average running times of both men
behavior” was measured as the number of decreased during intervention. The most optimal
responses the children completed according to a findings were associated with the combination of
35-response rating checklist. The training goal setting, performance feedback, and positive
methodology had them watch brief segments of reinforcement. The faster running times were
swimming self-modeling videotapes which maintained when the men participated in the
depicted increasingly superior performance. This Special Olympics track event one week follow-
intervention was moderately successful with all ing the study.
of the children. A key factor in promoting exercise, dis-
Rogers, Hemmeter, and Wolery (2010) cussed in greater detail later in the chapter, is
reported a more contemporary study of three selecting convenient, inexpensive, and readily
swimming responses (flutter kick, stroking with accessible options. Bike riding, as an example,
front-crawl motion, and turning head to side) is a popular form of physical activity with
performed by three children with autism. The children and adults alike. Cameron, Shapiro,
intervention consisted of time-delay prompting, and Ansleigh (2005) intervened with a
applied progressively with each child, until they 9-year-old boy diagnosed with Asperger syn-
were able to demonstrate the swimming respon- drome by having him pedal for 5 min on a
ses independently. This method of prompting stationary kinetic trainer. Once he mastered this
allowed the children to display the swimming performance objective, he was taught to pedal
responses independently before guidance was longer, then brake, and finally dismount. The
initiated from an instructor. next stage of intervention was removing the
Some exercise intervention has taken place in bike from the stationary kinetic trainer and
the context of athletic games. Cameron and having the boy ride his bike a short distance
Capello (1993) prepared a man with intellectual outside his home. Eventually, he was able to
and developmental disabilities for jumping hur- ride his bike independently with supervision in
dles at a Special Olympics track event. He his neighborhood.
12 Exercise, Leisure, and Physical Well-Being 177

Like bike riding, walking is another versatile Exergaming links a person’s physical move-
and highly adaptable form of exercise, particu- ments to electronic video games in the context of
larly well-suited to people who have intellectual individual and team sports. With respect to
and developmental disabilities. LaLonde, Mac- people who have IDD, Lotan, Yalon-Chamovitz,
Neill, Eversole, Ragotzy, and Poling (2014) and Weiss (2009) found that a virtual reality
successfully increased the number of steps five program of game-like exercises improved phys-
adults with ASD took during a walking activity ical fitness of adults with cognitive challenges.
at their day-program. During all phases of a Dickinson and Place (2014) also reported
multiple baseline design, they wore a pedometer improved physical fitness in children with autism
that recorded daily step frequency. The contin- who viewed and interacted with a
gencies in effect during intervention were computer-based activity program featuring
encouraging the adults to set daily step frequency Olympic events such as fencing, aquatics, row-
goals, reinforcing goal attainment with preferred ing, archery, shooting, and gymnastics. Other
“rewards,” and gradually increasing the step research suggests that exergaming arrangements
frequency goals when progress was demon- may lead to increased energy expenditure and
strated. All of the adults consistently increased corollary health gains in youth who have intel-
the number of steps they took and were walking lectual and developmental disabilities (Strahan &
10,000 or more steps each day by the end of the Elder, 2015). Persons exposed to exergaming and
study. similar computer-assisted programs may be more
The benefits of walking notwithstanding, motivated to exercise because the types of sen-
many people with intellectual and developmental sory stimulation and games can be matched to
disabilities also have motor, sensory, and ortho- their preferences. This attribute of intervention
pedic impairments which impede fluent ambula- contrasts favorably against more conventional
tion. Lancioni, Singh, O’Reilly, Sigafoos, and types of exercise which people perceive as being
Oliva (2016) summarized how assistive tech- monotonous and unappealing. Another advan-
nology devices can facilitate walking in people tage of exergaming is that it makes exercise
who have intellectual and developmental dis- convenient and accessible within a person’s
abilities and multiple disabilities affecting motor home or other community-dwelling location.
functioning. This line of research establishes
specific ambulatory routes within habilitation
care settings and measures travel distance and Leisure
duration under baseline and intervention condi-
tions. With intervention, individuals wear optic Leisure skills and activities enable people with
microswitches on their shoes, activated when intellectual and developmental disabilities to
walking, and producing pleasurable sensory experience the pleasure from recreation, different
stimulation such as vibration, music, and lights. entertainment sources (e.g., movies, music, and
The step-contingent sensory stimulation func- television), hobbies, and many other high-interest
tions as positive reinforcement in increasing areas. Individual leisure choices themselves can
distance and time spent ambulating (Lancioni be rewarding but group participation allows for
et al., 2012, 2013, 2014). Walking as exercise peer interaction, development of social compe-
can then occur spontaneously or be scheduled as tencies, and opportunity to learn behavior-coping
a planned physical activity. skills (Eratay, 2013). Group leisure events also
Assistive technology of another kind, permit people with intellectual and develop-
exergaming, appears to be effective intervention mental disabilities to further develop and expand
for increasing exercise in typically developing their communication abilities.
children (Fogel, Miltenberger, Graves, & Koeh- Similar to exercise, multiple responses usually
ler, 2010; Leiringer, Coles, & Gilbert, 2010; comprise leisure skills, making it necessary to
Shayne, Fogel, Miltenberger, & Koehler, 2012). conduct training until a person achieves fluent
178 J.K. Luiselli

performance. Most leisure skills training research developmental disabilities (Gardner & Wolfe,
has relied on conventional ABA instructional 2013; Wang & Koyama, 2014). The method of
methods such as prompting, prompt-fading, and video prompting incorporates a device such as
positive reinforcement. More recently, the train- iPod Touch to depict task analyses of target
ing focus has embraced instructional media via skills. In typical format, a video demonstrates
computers and an ever-increasing array of por- each step of the task analysis, with accompany-
table platform devices (Luiselli & Fischer, 2016). ing audio narration, serving as prompts for the
Ideally, the choice of leisure skills training person viewing the video. Additional verbal and
objectives should be informed by a person’s physical prompting is provided if the video
identified preferences relative to age, gender, and prompts alone do not occasion the task analysis
demonstrated ability. For example, before steps. In one study, Edrisinha, O’Reilly, Choi,
teaching leisure activity schedules to children Sigafoos, and Lancioni (2011) used video
with autism, Carlisle, Reeve, Reeve, and DeBar prompting to teach the leisure activity of taking
(2013) surveyed grade-equivalent general edu- and printing digital pictures with four adults who
cation students to ascertain their interest in 30 had IDD. Similarly, Chan, Lambdin, Van Laar-
toys and leisure materials. Preference assess- hoven, and Johnson (2013) trained an adult with
ments of the most enjoyed items were later car- IDD the skills necessary to paint pictures, listen
ried out with the children who had autism in to music, and take digital photographs via visual
order to confirm individual training choices. prompting and other guidance procedures. Once
Carlisle et al. (2013) illustrates an exemplary an individual acquires the trained skills, it is
approach to assessment by selecting leisure usually possible to fade and ultimately withdraw
materials and activities that were both video prompting until it is no longer necessary to
age-appropriate and preferred by the training support performance.
recipients. In contrast to video prompting, video modeling
Lagomarciano, Reid, Ivancic, and Faw (1984) shows an entire skill sequence, which a person
published one of the earliest leisure skills training watches, and then imitates the demonstrated
programs with four adolescent young adults who responses after viewing the visual depiction
had IDD. The program emphasized dancing as a (Nikopoulos, Luiselli, & Fischer, 2016). The
leisure activity, defined as “continuous body video medium makes it possible to film a variety of
movement in an apparent attempt to dance while skills, matched to a person’s current performance
music is playing” (p. 73) with additional arm and level, under simulated and natural conditions.
leg responses specified operationally. The Natural setting videos are especially helpful in
researchers socially validated the skill definitions promoting generalization and transfer of learning.
by observing the dancing behavior of same-age The range of leisure skills taught to people with
people who were both typically developing and intellectual and developmental disabilities
had IDD (Kazdin, 1977; Wolf, 1978). Training through video modeling has been impressive,
occurred serially for leg, arm, and combined leg– including watching movies, photography, and
arm movements using modeling, verbal feed- listening to music (Hammond, Whatley, & Gast,
back, error-contingent practice, and social rein- 2010; Kagohara, 2011; Kagohara et al., 2011).
forcement. To enhance generalization of the Care-providers can purchase commercially pre-
dance movements, several trainers implemented pared products or create their own videos with
the program in different settings. As a result of camera-equipped smartphones and computer
training, all of the participants learned to dance tablet devices (Allen, Vatland, Bowen, & Burke,
and with post-training supervision danced 2015). Custom-made videos have the advantage of
appropriately during generalization assessments individualizing models and scenarios to a person’s
with novel peers and staff. unique learning objectives.
Video-based instruction has strong evidence Digital devices can also support people with
support with children and adults who have intellectual and developmental disabilities in
12 Exercise, Leisure, and Physical Well-Being 179

completing daily activity schedules. Carlisle executing yoga poses in videos and then
et al. (2013) evaluated an iPod Touch for self-rated the correct and incorrect responses they
prompting four children with autism to perform performed. One of the adults also received video
leisure skills in their classroom. Each child was performance feedback from an instructor after
provided a device that had pictures of individu- viewing practiced poses. The self-evaluation and
ally preferred leisure activities. The children performance feedback variants of video model-
learned to select from a leisure activity schedule ing were successful with both adults learning the
preceding play opportunities. Following inter- yoga poses, although the immediate results of
vention, they independently followed the iPod instruction diminished somewhat 2–5 weeks
Touch visual schedules, increased their on-task following intervention. Nonetheless, video
behavior, and generalized leisure activity selec- modeling that encourages self-evaluation and can
tion to novel settings and schedules. When be combined with performance feedback has
individuals have confirmed leisure preferences, a potential application for instructing yoga as a
digitally assisted intervention showing daily meaningful leisure activity for people with
schedules can maximize their exposure to and intellectual and developmental disabilities.
full participation in pleasurable activities. Concerning recreational activities, the trend
Learning to operate a digital device indepen- has been toward inclusive leisure lifestyles
dently also reduces the intensity of supervision whereby people with IDD can interact with typ-
demanded from care-providers. ically developing peers and other community
Yoga is a healthy leisure activity with wide- members (Schleien, Miller, & Shea, 2009; Sch-
spread appeal in the general population leien, Stone, & Rider, 2005). Miller, Schleien,
(Choudhury, 2000). Various yoga poses can and Lausier (2009) accounted for several factors
improve body posture, balance, and flexibility, as that have encouraged and challenged inclusive
well as contribute to a contemplative mental state service delivery (ISD) practices over the years.
(Chong, Tsunaka, Tsang, Chan, & Cheung, They noted that although many agencies have
2011; Ross & Thomas, 2010; Telles, Singh, adopted evidence-supported procedures, various
Bhardwaj, Kumar, & Balkrishna, 2013). methods and accommodations remain highly
Recently, Gruber and Poulson (2016) evaluated individualized and less systematic in actual
parent-implemented teaching of yoga to three implementation. Some of the common omissions
young children with autism. During a baseline to effective service provision are as follows:
phase, the children watched a DVD of a yoga (a) not completing comprehensive client assess-
instructor performing a 24-step response chain of ments, (b) failing to secure adequate program
two yoga poses (asanas) without direct instruc- resources, (c) limited environmental accommo-
tion from their parents. Yoga training consisted dations, (d) having to intervene with problem
of the parents guiding the children through the behavior, (e) poor recruitment of inclusion sup-
poses, correcting response errors when they port staff, and (f) minimal on-site technical
occurred, and reinforcing proper responding with assistance. Overcoming these system-level con-
praise and preferred items. All of the children cerns is critical to the success of recreational
increased independent matching of yoga programming with people who have intellectual
responses from the DVD and in two cases and developmental disabilities.
demonstrated generalization to a new instructor.
Note, too, that video modeling instruction
may be effective in teaching basic yoga respon- Physical Well-Being
ses to people who have intellectual and devel-
opmental disabilities, as reported in a study by There are other tertiary and preventive interven-
Downs, Miltenberger, Biedrinski, and Wither- tions that can enhance the physical well-being of
spoon (2015) with two typically developing people with intellectual and developmental dis-
adults. The participants watched themselves abilities beyond exercise and leisure activities.
180 J.K. Luiselli

Notably, behavioral methods have demonstrated outpatient and inpatient treatment programs, and
effectiveness in treating feeding problems that secure relapse prevention aftercare alternatives.
compromise a person’s weight, nutritional status, Noteworthy in the area of addiction research,
and caloric intake (Volkert, Patel, & Peterson, Singh et al. (2013) described a
2016). Rumination disorder, another serious mindfulness-based smoking cessation program
condition with complicated health risks, has also with three men who had mild intellectual and
been reduced and eliminated through behavioral developmental disabilities and smoked between
intervention (Luiselli, 2015a). If obesity threat- 14 and 35 cigarettes daily. The program inte-
ens a person’s physical well-being, a too frequent grated mindfulness intention, mindfulness
occurrence in intellectual and developmental observation of thoughts, and meditation prac-
disabilities (Moran et al., 2005; Stancliffe et al., tices. At the conclusion of intervention and one
2011), feeding, nutrition, and exercise interven- year later, the men had abstained from smoking.
tions should be integral components of a com- Singh et al. (2014) extended this line of research
prehensive and multidisciplinary intervention by comparing a mindfulness treatment protocol
plan (Fleming, 2011). administered with 25 men who had mild intel-
Getting sufficient hours of sleep and practic- lectual and developmental disabilities (average
ing proper sleep hygiene further contribute to smoking history = 15 years) with a
physical well-being. Many sleep problems are treatment-as-usual group of 26 men who had
evident in intellectual and developmental dis- mild intellectual and developmental disabilities
abilities (Richdale & Baker, 2014), negatively (average smoking history = 17.2 years). A sig-
affecting mood, energy level, and executive nificant number of the mindfulness treatment
function (Stores, 2002), and posing increased group participants stopped smoking whether they
health risks (Colton & Altevogt, 2006; Doran completed or dropped out of the study and
et al., 2006). Durand (2014a) and Luiselli one-year post-intervention.
(2016c) reviewed several ABA interventions Mattson, Roth, and Sevlever (2016) reviewed
which can improve sleep and overcome the contribution of personal hygiene to physical
sleep-related problems in people with intellectual well-being, highlighting grooming, menstrual
and developmental disabilities, specifically care, and preventive oral practices (tooth brush-
delayed sleep onset, night awakenings, disruptive ing, flossing, dental checkups). They noted that
bedtime routines, and daytime sleeping (hyper- “with respect to behavioral health, establishment
somnia). Sleep hygiene can be addressed by of personal hygiene skills leads to an improved
presenting relaxing activities at least 30 min quality of life, improved medical outcomes for an
before going to bed. A second step toward sat- individual, and reduction in disease incidence”
isfying sleep is eliminating sleep-interfering (p. 43). Many ABA-styled programs have taught
stimulation in the bedroom (e.g., noise, light, personal hygiene skills with different prompting
uncomfortable temperature). Other practical methods, video modeling, self-monitoring, pic-
guidelines are restricting caffeine consumption in ture cues, and positive reinforcement (Anderson,
the evening and establishing consistent bedtime– Jablonski, Thomeer, & Knapp, 2007). Two pro-
wake up schedules. A systematic, practitioner grammatic priorities are transferring personal
friendly guide to behavioral sleep intervention hygiene skills training from simulated to natural
can be found in Durand (2014b). conditions, and promoting the highest level of
Substance use is not uncommon in people independent responding possible.
with IDD despite unsystematic screening– Further impact on the physical well-being of
assessment practices and limited evidence-based people with intellectual and developmental dis-
treatment research (Didden, VanDerNagel, & abilities comes from establishing compliance
van Duijvenboda, 2016). Nonetheless, service with medical routines. However, many individ-
professionals are encouraged to study the risk uals fear medical procedures and resist well-care
factors for developing addictive behavior, design visits that can identify and treat minor illnesses
12 Exercise, Leisure, and Physical Well-Being 181

and potentially greater threats to physical health and physical well-being. The most effective
(Allen & Kupzyk, 2016). The most effective methodology is conducted in vivo and directed at
behavioral interventions for compliance prob- observable performance according to a
lems combine graduated exposure to competency-based and behavioral skills training
fear-provoking stimuli, response shaping, mod- (BST) model (Luiselli, 2015b; Parsons, Roll-
eling, and positive reinforcement. Research sup- yson, & Reid, 2013; Reid, Parsons, & Green,
ports this integrative treatment model for 2012). Thus, in training personnel to apply an
desensitizing people with intellectual and devel- after-school exercise enrichment program with
opmental disabilities to tolerate physical exami- students who have IDD, care-providers would
nations (Cavalari, DuBard, Luiselli, & Birtwell, first be taught the steps comprising the program
2013; Gillis, Hammond, Lockshin, & Romanc- through didactic instruction, demonstration,
zyk, 2009), blood draws (Cromartie, Flood, & role-playing, and simulated practice. This pre-
Luiselli, 2014; Grider, Luiselli, & liminary training is followed by observing
Turcotte-Shamski, 2012), immunizations (Wolf care-providers interacting with service recipients.
& Symons, 2012), and dental cleanings (Conyers The trainer conducting observation delivers
et al. 2004). Compliance with explicit medical feedback to the care-providers about their per-
treatments has also been trained with these same formance using modeling, guided practice, rein-
procedures (Allen & Hine, 2015). forcement of skill accuracy, and error correction.
Training must be intensive enough to establish
competent performance by care-providers, then
Practice and Research Directions gradually faded with periodic monitoring to
promote maintenance over time.
It is encouraging that many of the intervention Care-provider training, by itself, is not suffi-
procedures reviewed in this chapter were evalu- cient unless there is complimentary assessment
ated in naturalistic settings that deliver services of intervention integrity (Sanetti & Kratochwill,
to people who have intellectual and develop- 2014). Integrity measurement evaluates whether
mental disabilities. Research-to-practice transla- care-providers implement procedures accurately,
tion allows for dissemination of evidence-based as defined in a written plan, and consistent with
methods to care-providers, schools, organiza- expected performance criteria. Similar to the
tions, and families. These high-quality practices format of in vivo training, intervention integrity
targeting exercise, leisure, and physical assessment requires a professional to observe
well-being must be empirically supported to gain care-providers applying procedures, document
acceptance by practitioners in “real-world” set- procedural fidelity, and reinforce-correct imple-
tings. There are other considerations about the mentation accuracy and errors, respectively. For
implementation efficiency of recommended pro- example, to measure intervention integrity in the
cedures, intervention integrity, social validity, Chan et al. (2013) study that taught leisure skills
and factors contributing to a personally fulfilling via video modeling, “an observer noted the
lifestyle. instructor’s completion of components of the
In natural settings, such as schools, human intervention (i.e., gaining the participant’s atten-
services organizations, community agencies, and tion, showing the videos, allowing time to
homes, teachers, direct-care staff, instructional respond, systematically providing extra prompts,
assistants, and parents are typically the and ending the activity” (p. 415) during
care-providers responsible for implementing approximately 50% of intervention sessions.
intervention procedures. Care-provider training When intervention integrity is less than desirable
has been a productive area in ABA (Lerman, (below 85% accuracy), the intervention compo-
LeBlanc, & Valentino, 2015; Luiselli, 2011, nents responsible for misapplication must be
2015b) and applicable to the procedural demands re-trained to the performance criteria required for
necessary for improving exercise, leisure skills, intervention success.
182 J.K. Luiselli

Several of the studies presented in this chapter increase MVPA by having a person play virtual
illustrated the process of social validity assess- sports that might otherwise be inaccessible.
ment of exercise and leisure skills intervention. Exergaming and similar modalities also make
LeLonde et al. (2014) asked service recipients physical and leisure activities convenient, a fac-
whether they liked or disliked wearing a tor that correlates highly with exercise compli-
pedometer to measure walking distance and if ance and maintenance (Brawley, Rejeski, &
they would want to wear it and set walking goals King, 2003). For individuals who enjoy social
in the coming year. Social validation in this study attention, group-oriented activities would be the
further requested the program instructor to rate optimal venue. Finally, in research conducted
the acceptability and effectiveness of interven- with typically developing children, Normand and
tion. Gruber and Poulson (2016) had parents colleagues (Hustyi, Normand, Larson, & Morley,
complete a survey based on a 7-point Likert-type 2012; Larson, Normand, Morley, & Hustyi,
scale (7 = completely satisfied and 1 = com- 2014) found that simply providing access to
pletely dissatisfied) to ascertain satisfaction with certain types of fixed equipment (e.g., slides,
their child’s enjoyment of yoga and learning monkey bars, stairs) can increase physical
yoga as a new skill. A meaningful finding from activity. Another contextually effective inter-
social validity assessment research is that vention was strategically planning interactive
acceptance of and satisfaction with intervention play with contingent attention from adults.
objectives, procedures, and results by Increased physical activity was also occasioned
care-providers appear to be a good indication of by having children play in groups instead of
procedural fidelity and therapeutic maintenance playing alone. By virtue of implementation effi-
(Kennedy, 2000). ciency, these and similar methods should be
Chan et al. (2013) suggested another measure evaluated with people who have intellectual and
of social validity through direct observation of developmental disabilities. A further benefit from
people’s activity engagement and enjoyment. low-demand interventions of this kind is high
Describing an adult with IDD who acquired new social validity among care-providers.
leisure skills, they wrote, “he frequently smiled All of the intervention objectives outlined in
and laughed when he had the opportunity to take this chapter have been aided demonstrably by the
pictures” and “he also appeared to enjoy looking emergence and continued refinement of assistive
at pictures on the iPod and often browsed and telehealth technologies (Luiselli & Fischer,
through old pictures stored in the device” 2016; McKay, Przeworski, & O’Neill, 2016). To
(p. 418). Various objectively defined and recor- reiterate, assistive devices permit automatic tal-
ded indices of happiness such as smiling, lying of exercise and physical activity responses
laughing, initiating motor responses, and acti- (e.g., steps taken, distance travelled, energy
vating sources of sensory stimulation are note- expenditure), prompt leisure participation, and
worthy social validity measures. These measures model skills that can be acquired via imitative
are especially valid for people who have learning. Many computer-based and internet-
severe-profound IDD and are unable to conven- sources applications enable intervention to be
tionally express pleasure and satisfaction from conducted remotely, adapted to personal life-
exercising, being physically active, and partici- styles, economized to scale, and evaluated
pating in leisure events (Lancioni et al., 2005, through instantaneous data recording, summary,
2007). and visual display. For people with intellectual
A preliminary step in motivating and rein- and developmental disabilities, technology-
forcing people with intellectual and develop- focused intervention represents one of the most
mental disabilities to engage in exercise and promising approaches in the areas of exercise,
other health promoting interactions is formally leisure, and physical well-being. Among many
assessing their preferences (Tiger & Kliebert, influences on the maximum utility of assistive
2011). As reviewed previously, exergaming can technology, service professionals must consider
12 Exercise, Leisure, and Physical Well-Being 183

the financial costs of devices and instrumenta- science of behavior, interventions that are highly
tion, care-provider training, systems support, individualized do not lend themselves to wide
operations troubleshooting, and maintaining dissemination or adoption, even within applied
intervention integrity without direct supervision. behavior analysis and certainly not within
The success of behavioral intervention medical/dental clinics where these problems are
notwithstanding, there are many large-scale typically first encountered” (p. 38). Therefore,
issues that impact feasibility of program imple- behavioral psychology professionals must be
mentation in natural settings. For one, settings able to interact collaboratively with multidisci-
must have the financial resources to hire plinary colleagues in many service, primary care,
care-providers, train them accordingly, purchase and health settings. In summary, positive psy-
materials, and as is often the case, retain psy- chology that embraces contemporary ABA con-
chologists and other behavior specialists in a cepts and methodologies will contribute to the
consultation role (Guion, Olufs, & Freeman, discipline-shared goals of translating research
2016). Increased public funding to service findings to effective practices for establishing and
agencies remains a priority in line with policy sustaining exercise, leisure skills, and physical
initiatives and standards advancing health and well-being in the lives of people with intellectual
wellness guidelines devoted to people with IDD and developmental disabilities.
(U.S. Public Health Services, 2002; U.S.
Department of Health and Human Services,
2005). The population of behaviorally trained References
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opmental disabilities professionals must certainly Allen, K. D., & Hine, J. F. (2015). ABA applications in
increase to adequately serve the many needs of the prevention and treatment of medical problems.
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Prevention is one of the common attributes (Eds.), Clinical and organizational applications of
applied behavior analysis (pp. 95–124). New York:
linking ABA and positive psychology, as evident Academic Press.
by antecedent interventions that arrange envi- Allen, K. D., & Kupzyk, S. (2016). Compliance with
ronmental conditions and numerous prompting medical routines. In J. K. Luiselli (Ed.), Behavioral
strategies which encourage exercise, leisure par- health promotion and intervention in intellectual and
developmental disabilities (pp. 21–42). New York:
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surgeon general’s conference on health disparities Research in Developmental Disabilities, 32, 280–288.

Author Biography
James K. Luiselli, EdD, ABPP, BCBA-D is Chief Clinical performance psychology, professional training, and organi-
Officer at Clinical Solutions, Inc., and North East Educational zational behavior management (OBM). Among his publica-
and Developmental Support Center, Tewksbury, Mas- tions are 14 books, 60 book chapters, and 275 journal articles.
sachusetts. He is a licensed psychologist, diplomate in His is an Associate Editor for Behavior Analysis and Practice
behavioral and cognitive psychology, and board certified and the Journal of Child and Family Studies, Consulting
behavior analyst. Dr. Luiselli has major interests in the areas Editor for Child & Family Behavior Therapy, and on the
of applied behavior analysis, cognitive-behavioral treatment, Board of Editors for six peer-reviewed journals.
 Character Strengths
13
Karrie A. Shogren, Ryan M. Niemiec, Dan Tomasulo
and Sheida Khamsi

strengths are understood to be positive, trait-like

Character Strengths
capacities that benefit oneself and others
(Niemiec, 2014) and are “shown in feelings,
The field of positive psychology emerged as an
thoughts, and actions” (Park & Peterson, 2009,
initiative to better understand optimal human
p. 3). Each person has a unique constellation of
functioning, emphasizing positive emotions,
character strengths that vary in degree based on
positive traits, positive relationships, and positive
the context. While it is assumed that character
institutions, rather than negative aspects of
strengths are universal across cultures and found
functioning (Lopez & Snyder, 2011; Seligman &
in every person, each person has a unique profile
Csikszentmihalyi, 2000). Positive psychology
of character strengths. The assessment of char-
does not replace traditional psychology, rather it
acter strengths is a useful and meaningful
complements deficit-based approaches, offering
endeavor, and assessment data can be used to
science to inform, reframe, and/or improve tra-
guide interventions and supports that are indi-
ditional psychological approaches. One area
vidualized to each person’s specific profile of
within positive psychology that has received
character strengths.
significant attention has been the identifica-
Researchers in the field of character strengths
tion and leveraging of character strengths and
engaged in a systematic process, over a three-year
virtues (Peterson & Seligman, 2004). Character
period, of identifying character strengths and vir-
tues valued across nations, cultures, and beliefs.
This resulted in the VIA Classification of Char-
acter Strengths and Virtues (Peterson & Seligman,
2004). The VIA Classification defined 24 char-
K.A. Shogren (&)
S. Khamsi
acter strengths that met various inclusion criteria,
University of Kansas, 1200 Sunnyside Ave.,
Rm 3136, Lawrence, KS 66045, USA such as each had to be ubiquitous across cultures,
e-mail: [email protected] measureable, personally fulfilling, trait-like, and
S. Khamsi when expressed could not diminish others, to
e-mail: [email protected] name a few criteria. These are organized under six
R.M. Niemiec overarching virtues (i.e., wisdom, courage,
VIA Institute on Character, 312 Walnut St., humanity, justice, temperance, and transcen-
Suite 3600, Cincinnati, OH 45202, USA dence), which are core characteristics of humans
e-mail: [email protected]
that have been valued by the world religions, by
D. Tomasulo moral philosophers, and by leading virtue thinkers
Department of Counseling and Clinical Psychology,
throughout the centuries. Table 13.1 provides this
Columbia University, Teachers College, 525 West
120th St., New York, NY 10027, USA VIA Classification structure and the concepts
e-mail: [email protected] related to each character strength and virtue.

© Springer International Publishing AG 2017 189

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_13
190 K.A. Shogren et al.

Table 13.1 VIA classification of character strengths and virtues

© Copyright 2004–2015, VIA Institute on Character. All rights reserved. Used with permission. www.viacharacter.
org
Wisdom—cognitive strengths that entail the acquisition and use of knowledge
• Creativity [originality, ingenuity]: thinking of novel and productive ways to conceptualize and do things;
includes artistic achievement but is not limited to it
• Curiosity [interest, novelty seeking, openness to experience]: taking an interest in ongoing experience for its own
sake; finding subjects and topics fascinating; exploring and discovering
• Judgment [open-mindedness; critical thinking]: thinking things through and examining them from all sides; not
jumping to conclusions; being able to change one’s mind in light of evidence; weighing all evidence fairly
• Love of learning: Mastering new skills, topics, and bodies of knowledge, whether on one’s own or formally;
related to the strength of curiosity but goes beyond it to describe the tendency to add systematically to what one
knows
• Perspective [wisdom]: Being able to provide wise counsel to others; having ways of looking at the world that
make sense to oneself/others
Courage—emotional strengths that involve the exercise of will to accomplish goals in the face of opposition, external
or internal
• Bravery [valor]: Not shrinking from threat, challenge, difficulty, or pain; speaking up for what’s right even if
there’s opposition; acting on convictions even if unpopular; includes physical bravery but is not limited to it
• Perseverance [persistence, industriousness]: Finishing what one starts; persevering in a course of action in spite
of obstacles; “getting it out the door”; taking pleasure in completing tasks
• Honesty [authenticity, integrity]: Speaking the truth but more broadly presenting oneself in a genuine way and
acting in a sincere way; being without pretense; taking responsibility for one’s feelings and actions
• Zest [vitality, enthusiasm, vigor, energy]: Approaching life with excitement and energy; not doing things halfway
or halfheartedly; living life as an adventure; feeling alive and activated
Humanity—interpersonal strengths that involve tending and befriending others
• Love (capacity to love and be loved): Valuing close relations with others, in particular those in which sharing and
caring are reciprocated; being close to people
Kindness [generosity, nurturance, care, compassion, altruistic love, “niceness”]: doing favors and good deeds for
others; helping them; taking care of them
• Social intelligence [emotional intelligence, personal intelligence]: being aware of the motives/feelings of others
and oneself; knowing what to do to fit into different social situations; knowing what makes other people tick
Justice—civic strengths that underlie healthy community life
• Teamwork [citizenship, social responsibility, loyalty]: Working well as a member of a group or team; being
loyal to the group; doing one’s share
• Fairness: Treating all people the same according to notions of fairness and justice; not letting feelings bias
decisions about others; giving everyone a fair chance
• Leadership: Encouraging a group of which one is a member to get things done and at the same time maintain
good relations within the group; organizing group activities and seeing that they happen
Temperance—strengths that protect against excess
• Forgiveness [mercy]: Forgiving those who have done wrong; accepting others’ shortcomings; giving people a
second chance; not being vengeful
• Humility [modesty]: Letting one’s accomplishments speak for themselves; not regarding oneself as more special
than one is
• Prudence: Being careful about one’s choices; not taking undue risks; not saying or doing things that might later
be regretted
• Self-regulation [self-control]: Regulating what one feels and does; being disciplined; controlling one’s appetites
and emotions
(continued)
13 Character Strengths 191

Table 13.1 (continued)

Transcendence—strengths that forge connections to the universe and provide meaning
• Appreciation of beauty and excellence [awe, wonder, elevation]: Noticing and appreciating beauty, excellence,
and/or skilled performance in various domains of life, from nature to art to mathematics to science to everyday
experience
• Gratitude: Being aware of and thankful for the good things that happen; taking time to express thanks
• Hope [optimism, future-mindedness, future orientation]: Expecting the best in the future and working to achieve
it; believing that a good future is something that can be brought about
• Humor [playfulness]: Liking to laugh and tease; bringing smiles to other people; seeing the light side; making
(not necessarily telling) jokes
• Spirituality [religiousness, faith, purpose]: Having coherent beliefs about the higher purpose and meaning of the
universe; knowing where one fits within the larger scheme; having beliefs about the meaning of life that shape
conduct and provide comfort

the VIA Classification System and assesses the 24

VIA Classification of Strengths character strengths and six virtues described in
Table 13.1. The scale was developed for
The 24 character strengths and the six virtues self-report by adults ages 18 and over. When
described by the VIA Classification provide a completing the scale, people rate a series of items
complement to traditional classification systems on a 5-point Likert scale (1 = very much like me;
for deficits used in the psychology field, such as 2 = mostly like me; 3 = somewhat like me; 4 = a
the Diagnostic and Statistical Manual of Mental little like me; and 5 = very much unlike me).
Disorders, 5th edition (DSM-5; American Psy- Sample items include the following: “I find the
chiatric Association, 2013) and the Diagnostic world a very interesting place” (Curiosity); “I am
Manual-Intellectual Disability (Fletcher et al., aware of my own feelings and motives” (Social
2007), an evidence-based manual that helps to Intelligence); “I always speak up in protest when I
improve the accuracy of diagnosing people with hear someone say mean things” (Bravery); and
intellectual disability and to ensure psychiatric “When I look at my life, I find many things to be
conditions are not overshadowed and left grateful for” (Gratitude). The original version of
untreated (Griffiths et al., 2002; Reiss, Levitan, & the scale consists of 240 items, but two shorter
Szyszko, 1982). Since its introduction, the VIA versions, the VIA-120 and the VIA-72, with the
Classification of Strengths has been extensively best items from each of the character strength
studied, amounting to hundreds of peer-reviewed domains that maintained adequate validity have
publications in a short time period (Niemiec, also been created (Littman-Ovadia, 2015).
2013; VIA Institute, 2016), and researchers have Researchers have found that scores on the long and
suggested that the nomenclature and classification short versions of the VIA-IS have adequate relia-
system has applicability across time and cultures bility with adult populations in the USA
(Biswas-Diener, 2006; Dahlsgaard, Peterson, & (McGrath, 2014; VIA Institute on Character, n.d.).
Seligman, 2005). Additionally, assessments have The VIA-IS has also been translated into 32 lan-
been developed that allow for the identification of guages, including Danish, Dutch, French, Italian,
character strengths in youth and adults. Japanese, Portuguese, Brazilian Portuguese,
Spanish, Swedish, Turkish, simplified Chinese,
and traditional Chinese (McGrath, in press) and
VIA Inventory of Strengths (VIA-IS) has been shown to have strong measurement
properties across cultures (Littman-Ovadia &
The VIA Inventory of Strengths (VIA-IS; Peterson Lavy, 2012; Ruch, Weber, Park, & Peterson,
& Seligman, 2004) was developed to align with 2014; Singh & Choubisa, 2010).
192 K.A. Shogren et al.

Ongoing research, however, continues to look provides unique information, and when youth
at the best way to understand character strengths highly endorse character strengths, this predicts
and virtues. For example, several researchers various positive outcomes, including academic
have found that the character strengths tend to be achievement and social skills (Macdonald et al.,
highly related (Brdar & Kashdan, 2010; Haslam, 2008; Weber, Wagner, & Ruch, 2014) as well as
Bain, & Neal, 2004; Littman-Ovadia & Lavy, well-being and happiness (Toner, Haslam,
2012; Macdonald, Bore, & Munro, 2008; Peter- Robinson, & Williams, 2012).
son, Park, Pole, D’Andrea, & Seligman, 2008; As discussed subsequently, research has
Ruch et al., 2010; Shryack, Steger, Krueger, & begun to explore the application of the
Kallie, 2010; Singh & Choubisa, 2010), sug- VIA-Youth with adolescents with disabilities,
gesting there may be different ways to under- including adolescents with intellectual disability.
stand and define the virtues and the character Before over viewing that work, however, it is
strengths that align with them. For example, worth looking at what one might do with
researchers have suggested that rather than the assessment information on character strengths.
original six virtues of wisdom, courage, human- Having valid and reliable measures of character
ity, justice, temperance, and transcendence, there strengths provides a means through which people
might be alternative virtue groups, such as with and without disabilities and people who
interpersonal or sociability strengths, or intel- support them can understand the strengths and
lectual or cognitive strengths (Peterson et al., virtues that people feel reflect them, and this
2008; Shryack et al., 2010). information can then be used to build on each
person’s strengths, using interventions such as
those described in the following sections.
VIA-Youth

The VIA Inventory of Strengths for Youth Interventions to Enhance Character

(VIA-Youth; Park & Peterson, 2006b) was cre- Strengths
ated to allow for the assessment of character
strengths based on the VIA Classification in As briefly described in the previous section,
adolescents and youth ages 10–17 years. The understanding the character strengths that people
assessment is a modified version of the VIA-IS, demonstrate can lead to the development of
with changes made to items to make them for age interventions and supports that build on those
appropriate for youth of these ages. The same strengths. Existing research suggests the impor-
character strengths are assessed, just in ways that tance of building on strengths. Multiple positive
are relevant to youth and the settings and situa- outcomes are predicted by character strengths
tions most familiar to them. Modified items were (Harzer & Ruch, 2014; Vertilo & Gibson, 2014;
reviewed by youth, teachers, and parents (Steen, Weber et al., 2014), suggesting that efforts to
Kachorek, & Peterson, 2003). The original enhance strengths have the potential to promote
VIA-Youth included 198 items, but a short form more positive outcomes. For example, temper-
(96 items) was created to promote usability. Both ance and perseverance have been found to pre-
the long and short version have good reliability dict academic achievement, and hope and zest
(VIA Institute on Character, n.d.). Researchers predict well-being (Park & Peterson, 2006b;
have shown the tool could be effectively used Park, Peterson, & Seligman, 2004).
with US (Park & Peterson, 2006b) and South
African youth (van Eeden, Wissing, Dreyer,
Park, & Peterson, 2008), and that teacher’s rat- Strengths-Spotting
ings of students strengths are correlated with
youth ratings (Macdonald et al., 2008; Park & Strengths-spotting involves at least two steps:
Peterson, 2006a). Assessing character strengths (1) Look for and label a character strength in
13 Character Strengths 193

oneself or others, and (2) offer a rationale/ intervention, people choose one of their signature
behavioral evidence for the character strength strengths that emerged high in their VIA Survey
that is being displayed. Strengths-spotting is a profile (the results of the assessment); then, they
skill that can be cultivated by anyone, including are asked to use that signature strength in a new
people with disabilities. Research has supported way each day. For example, a person who has
strengths-spotting of children by parents, finding Curiosity as a signature strength might use that to
that parents identify numerous character explore a new Web site one day and try a new
strengths in their children with intellectual dis- food the next day. A person with a signature
ability and/or autism across multiple domains of strength in Social Intelligence might approach
life, and the strengths were predicted by greater someone new at work and ask them a couple of
involvement in community activities (Carter questions. A person high in Kindness might offer
et al., 2015). to give a friend a ride home one day and then
As is true for all people, additional support is bring his or her coworker a coffee the next day.
sometimes helpful with strengths-spotting prac- This intervention has been used with various
tices for people with disabilities. Examples groups, including youth (Madden, Green, &
include the use of a VIA Classification grid Grant, 2011), older adults (Proyer, Gander,
(e.g., a user-friendly list with definitions of the 24 Wellenzohn, & Ruch, 2014), employees (Forest
character strengths), question prompts (e.g., et al., 2012), and people with traumatic brain
“Which of these best describes who you are?”), injuries (Andrewes, Walker, & O’Neill, 2014). It
and structured discussions/activities (e.g., “Tell has also been used across cultures (Duan, Ho,
me a story of something good that you did Tang, Li, & Zhang, 2013; Mitchell, Stan-
recently” followed by “What character strengths imirovic, Klein, & Vella-Brodrick, 2009; Mon-
were in that story?”). Pairing the strengths with grain & Anselmo-Matthews, 2012). In each
valued activities such as watching movies, circumstance, positive outcomes have been
reading, playing video games, doing artwork, or found that last beyond the week that is the target
playing a sport is helpful to the integration of of the intervention, and in some cases, the ben-
learning (Niemiec & Wedding, 2014) efits to increased happiness and reduced depres-
(e.g., “What are the highest strengths of Anna in sion last for six months (Gander et al., 2012;
Frozen?” or “What character strengths did you Seligman et al., 2005).
use, while you were playing basketball today?”).
Strengths-spotting is a key starting point for
supporting people to understand and develop “a Using Character Strengths
common language of strengths” and is the pre- to Promote Other Strengths
cursor for strengths use as well as the develop-
ment of a “strengths mindset” (Niemiec, 2014). If you ask 100 practitioners whether or not they
are “strengths-based,” it is not uncommon to see
100 hands rise up. But, there will be 100 different
Promoting Signature Strengths definitions for what it means to be
strengths-based and what a strength is in the first
One of the strongest findings in all of positive place. Indeed, human beings have many different
psychology is that a person’s signature strengths kinds of strengths. Niemiec (2014) has outlined
—those qualities that are most core to who they several types, including talents (i.e., hardwired
are—are of extreme importance, as they are abilities such as spatial intelligence and
related to personal identity, performance, and mathematical-logical intelligence); skills (i.e.,
various outcomes. One commonly used inter- proficiencies people develop such as typing or
vention that has been shown to have high impact painting houses); interests (i.e., passions people
in people’s lives is called “use your signature are pulled toward such as artwork and playing
strengths in new ways each day.” In this sports); and resources (i.e., external strengths that
194 K.A. Shogren et al.

support people such as having a caring family, orientation. A character strengths-based model
good friends, and living in a safe neighborhood). that reflects most of these while reflecting the core
It is the character strengths that drive the other features of what practitioners are ultimately doing
strengths categories and offer pathways for when they take a strengths approach is the
developing or tapping into skills, talents, Aware-Explore-Apply model (Niemiec, 2013,
resources, and interests. How can a person who 2014). This three-phase model is intentionally
has a musical talent not tap into their character simple and practical. The Aware phase focuses on
strengths of self-regulation and perseverance? supporting general awareness of character
How could a person make use of their resource of strengths, making sure people can engage in
a spiritual community without using their char- strengths-spotting, begin to develop their char-
acter strengths of hope, spirituality, and grati- acter strengths fluency (i.e., their vocabulary
tude? Unfortunately, there has been a disconnect related to the 24 character strengths), and ensur-
in the disability field between character strengths ing that barriers to understanding strengths are
and other strengths. Research, education plan- addressed. The second phase, Explore, promotes
ning (e.g., IEPs), and support programs have linkages between character strengths, previous
largely focused on building skills, interests, and experiences, and valued outcomes to enable
resources for individuals with disability and people to see how they have used their character
given far less attention to strengths that reveal strengths at the best and worst of times and to
who the individual is at their core—their char- understand that character strengths offer path-
acter strengths. Recently, researchers asked par- ways to improved happiness, relationship, and
ents of children with intellectual disability and/or achievement in their future. The person is sup-
autism to name their child’s strengths, and ported to explore how to use character strengths
overwhelmingly the responses from the parents in everyday life, from task to task, and from
fell within the domain of character strengths with conversation to conversation. Finally, in Apply,
less focus on the child’s skills, interests, and so the person learns to focus on taking action using
forth (Carter et al., 2015). character strengths and implementing strategies
Therefore, we argue for the conversation to to reach personal or professional goals. These
shift—not just from disability to ability phases build on each other and are part of a cycle
(deficit-based to strengths-based)—but to shift of growth, development, and growing awareness
from generic strengths to character strengths. and action (e.g., Fredrickson, 1998).
This does not mean to replace the development
of strengths in other categories, but to include
and give priority to who the individual is at their Research and Practice with
core. Practitioners can take action by assessing People with Intellectual
character strengths, asking questions about the and Development Disabilities
person’s character strengths, merging curriculum
in schools with character strengths, training The field of positive psychology and the appli-
parents/support providers/medical teams to dis- cation of constructs associated with positive
cuss character strengths with people, and offer psychology, such as character strengths, has
activities and interventions designed to boost or typically focused on the general population.
unleash the person’s signature strengths. However, researchers have clearly noted the
potential of assessment and intervention to pro-
mote character strengths in the lives of people
Aware-Explore-Apply Model with intellectual and developmental disabilities
(Dykens, 2005; Groden, Kantor, Woodard, &
There are a multitude of strengths-based approa- Lipsitt, 2011a; Niemiec, Shogren, & Wehmeyer,
ches and models that practitioners use and tailor in press). For example, Dykens (2005) suggested
to their population, discipline, and/or theoretical the need for strengths-based models that address
13 Character Strengths 195

character strengths to better understand the Other researchers have developed proxy report
experiences and outcomes of families and sib- measures of strengths that can be completed by
lings of people with intellectual disability. Gro- parents, teachers, or others that know the person
den et al. (2011b) suggested that people with with a disability well. The Assessment Scale for
autism spectrum disorders, if supported to do so, Positive Character Traits-Developmental Dis-
can enhance their character strengths and expe- abilities (ASPeCT-DD; Woodard, 2009) was
rience more positive outcomes. Niemiec et al. (in developed to assess 10 character strengths and
press) suggested ways that character strength predated the VIA Classification System. How-
interventions could be used in the lives of people ever, it has been shown to be a valid way of
with intellectual disability. Each of these authors engaging others in understanding and thinking
highlighted the potential for more research and about the strengths of people with disabilities.
intervention development that focuses on Using both self- and proxy reports can be an
assessing and building on character strengths to effective way to enable all members of a support
enhance outcomes for people with intellectual team to orient themselves toward strengths,
and developmental disabilities and those that changing the emphasis on deficits that often
support them. dominates assessment activities.

Assessing Character Strengths The Interactive Behavioral

Therapy Approach
While the VIA-IS and VIA-Youth were devel-
oped in the general population, researchers have Identifying and encouraging character strengths
begun to explore the application of the gives practitioners such as treatment facilitators
VIA-Youth with adolescents with disabilities, new tools in supporting sustainable changes. In
including adolescents with intellectual disability. one model, interactive behavioral therapy (IBT),
Findings suggest that the scale has similar relia- a group format is used, which has been specifi-
bility and validity in youth with disabilities, cally developed for people with intellectual dis-
although youth with disabilities, particularly ability and concomitant psychiatric disorders.
intellectual disability, tend to rate themselves IBT is an evidence-based psychotherapy devel-
lower in their strengths than their peers without oped more than 25 years ago with techniques
disabilities (Shogren, Wehmeyer, Lang, & Nie- drawn from components of many therapeutic
miec, 2016; Shogren, Shaw, Khamsi, Wehmeyer interventions, but chiefly from Moreno’s psy-
& Niemiec, 2016). This suggests the need for chodrama (Blatner & Blatner, 1988; Razza &
interventions such as strengths-spotting and Tomasulo, 2005), the work of Yalom and Leszcz
Aware-Explore-Apply with this group of stu- (2005), and more recently from positive psy-
dents, particularly as it is widely acknowledged chotherapy (Rashid, 2015; Seligman, Rashid, &
that assessment in this population tends to focus Parks, 2006). IBT has been the subject of a
more on deficit and remediation, rather than number of studies (e.g., Daniels, 1998) and the
building on strengths (Epstein, Synhorst, Cress, emphasis of the APA’s first book on psy-
& Allen, 2009). To support youth with intellec- chotherapy for people with IDs (Razza &
tual disability to complete the VIA-Youth, Tomasulo, 2005).
Shogren, Wehmeyer, Forber-Pratt, and Palmer The model was fashioned around the activa-
(2015) developed a resource that lists accom- tion of therapeutic factors originally identified by
modations and supports that can be provided Yalom and Leszcz (2005), as these elements
during administration to promote the reliability were the standards in group therapy outcome
of the scale, but enable people with intellectual studies. Therapeutic factors are those features
disability to communicate their perceptions of that have therapeutic value for members in a
their character strengths. group and are identified as acceptance/cohesion,
196 K.A. Shogren et al.

universality, altruism, instillation of hope, guid- express the character strength of gratitude to
ance, vicarious learning/modeling, catharsis, those people who may no longer be accessible to
imparting of information, self-disclosure, the person because they have moved, passed
self-understanding, interpersonal learning, cor- away, or toward someone unknown, such as a
rective recapitulation of the primary family, stranger who was kind. In this exercise, the
development of socializing techniques, and protagonist expresses his or her gratitude for the
existential factors. Initially, IBT facilitators were person symbolized by the empty chair. Follow-
trained on what to look for when a therapeutic ing this, the protagonist reverses roles and
factor emerged and how to identify and support becomes the person they are expressing gratitude
its occurrence (Razza & Tomasulo, 2005). toward. By role, reversing the person responds as
However, more recently, facilitators have also if the gratitude had just been expressed to him or
been trained to spot the presence of character her. Then, the protagonist returns to his or her
strengths (Tomasulo, 2014). This addition of original chair and responds (Tomasulo, 2014).
character strength-spotting by facilitators builds
on the work by Fluckiger et al. (2008). They
have developed a procedure, resource priming, Conclusions
where the facilitators of psychotherapy take a
few minutes before their session to focus on the Further work is needed, in research and in
strengths of their individual client. Priming leads practice, documenting the use and the impact of
to resource activation where group participants the character strengths interventions described in
focus on the positive perspective of their previous sections with people with intellectual
behavior. In people without intellectual disabil- and developmental disabilities. However, there is
ity, this leads to better progress in therapy as every reason to believe, particularly given the
measured by a reduction in symptoms and higher lower endorsement of strengths in adolescents
levels of well-being. By using this technique and with disabilities, that strengths-spotting, the
adding strengths-spotting to the recognition of promotion of signature strengths, and the
therapeutic factors, the IBT model is expanding Aware-Explore-Apply model can potentially
the ways in which therapeutic changes can be increase awareness of strengths and lead to more
facilitated (Tomasulo, 2014). positive outcomes for young people with dis-
Tomasulo (2014) offered an adaptation of the abilities. Signature strengths interventions have
traditional use of the gratitude visit (Seligman been used with other populations, with success,
et al., 2005) in which participants wrote and again suggesting the need to explore the use, and
delivered a letter of gratitude to a person they felt necessary supports and modifications, of this
they had not properly thanked. However, this strategy with people with intellectual and devel-
powerful method as originally researched opmental disabilities. For example, Samson and
requires the users be able to read and write to Antonelli (2013), in a study of 33 people with
take advantage of its effectiveness. In the IBT autism spectrum disorders, discovered humor to
model, it has been modified for people unable to be a lower or underused strength, ranking 16th
read and write by making the gratitude visit out of 24, whereas in a matched group of people
virtual through a role-playing exercise within the without autism spectrum disorders, it was 8th.
group. The use of role playing has many Since the strength of humor is linked with
advantages for people with intellectual disability hedonic happiness and positive emotions, an
because it enhances the engagement of the intervention such as “three funny things” (Gan-
members while activating more of the senses der et al., 2012) for people interested in boosting
(Tomasulo & Razza, 2006). this lower strength might be considered. The
Within the IBT format, the virtual gratitude study found that such reframing was found to be
visit (VGV) has also been used effectively to useful not only for the participants with autism
enable people with intellectual disability to spectrum disorders, but also for people that
13 Character Strengths 197

supported them. Groden, Kantor, Woodard, and Dahlsgaard, K., Peterson, C., & Seligman, M.
Lipsitt (2011a) described exercises, such as E. P. (2005). Shared virtue: The convergence of
valued human strengths across culture and history.
modeling appropriate laughter to boost the Review of General Psychology, 9, 203–213.
strength of humor and the direct encouragement Daniels, L. (1998). A group cognitive–behavioral and
of the strength of kindness through a kind deeds process-oriented approach to treating the social
program at school, as concrete ways to enhance impairment and negative symptoms associated with
chronic mental illness. Journal of Psychotherapy
character strengths in adolescents with autism. Research and Practice, 7, 167–176.
Such approaches, however, could easily be Duan, W., Ho, S. M. Y., Tang, X., Li, T., & Zhang, Y.
embedded in supports planning activities, such as (2013). Character strength-based intervention to pro-
those described in Chap. 3, as well as in many of mote satisfaction with life in the Chinese university
context. Journal of Happiness Studies, 15, 1347–1361.
the strategies describe in the Applications chap- Dykens, E. M. (2005). Happiness, well-being, and
ters included in Part 2 of this text. character strengths: Outcomes for families and sib-
More work is needed to develop strategies to lings of persons with mental retardation. Mental
enable people with intellectual and develop- Retardation, 43, 360–364.
Epstein, M. H., Synhorst, L. L., Cress, C. J., & Allen, E.
mental disabilities to understand their character A. (2009). Development and standardization of a test
strengths, and to leverage these strengths across to measure the emotional and behavioral strengths of
all domains of life (education, employment, preschool children. Journal of Emotional and Behav-
social, community). In doing so, this not only ioral Disorders, 17, 29–37.
Fletcher, R., Loschen, E., Stavrakaki, C., & First, M. (Eds.).
shifts the focus from deficit-based assessment (2007). Diagnostic manual—Intellectual disability: A
and intervention approaches, but also embraces textbook of diagnosis of mental disorders in persons
the strengths that are inherent to each of us and with intellectual disability. Kingston, NY: NADD Press.
Flückiger, C., & Grosse Holtforth, M. (2008). Focusing
enables the use of these strengths to build posi-
the therapist’s attention on the patient’s strengths: A
tive relationships, develop resilience, enhance preliminary study to foster a mechanism of change in
well-being, navigate barriers and challenges, and outpatient psychotherapy. Journal of Clinical Psy-
enjoy meaningful activities. chology, 64, 876–890.
Forest, J., Mageau, G. V. A., Crevier-Braud, L., Bergeron,
L., Dubreuil, P., & Lavigne, G. V. L. (2012).
Harmonious passion as an explanation of the relation
between signature strengths’ use and well-being at
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Author Biographies practice (MBSP), and positive interventions for those with
intellectual and developmental disabilities and those who
Karrie A. Shogren, Ph.D., is a Professor of Special Educa- support them.
tion, Senior Scientist at the Life Span Institute, and Director
of the Kansas University Center on Developmental Disabili- Dan Tomasulo, Ph.D., MFA, MAPP, is a psychologist and
ties at the University of Kansas. Dr. Shogren has published speaker working at the University of Pennsylvania with
extensively in the intellectual and developmental disabilities Martin Seligman. Honored by Sharecare as one of the top 10
field, and her research focuses on assessment and intervention online in influencers on the topic of depression, he is also the
in self-determination and positive psychology, and the director of the New York Certificate in Positive Psychology at
application of the supports model across the lifespan. She is the Open Center and teaches positive psychology at Teachers
co-Editor of Remedial and Special Education and Inclusion. College, Columbia University. He publishes extensively on
applying positive interventions within the field of intellectual
Ryan M. Niemiec, Psy.D., is a psychologist and education disability.
director of the VIA Institute on Character, a global nonprofit
that advances the science and practice of character strengths. Sheida Khamsi, M.Ed., is a doctoral student in the Depart-
He is faculty at several institutions including Xavier ment of Special Education at the University of Kansas. Her
University and University of Pennsylvania. He is author of a research interests include self-determination assessment and
few books including Mindfulness and Character Strengths: A curricular interventions for people with intellectual and
Practical Guide to Flourishing. His research interests include developmental disabilities.
character strengths interventions, mindfulness-based strengths
 Adaptive Behavior
14
Marc J. Tassé

The American Association on Intellectual and

Introduction
Developmental Disabilities (AAIDD) is gener-
ally considered the leading professional authority
Adaptive behavior is defined as behavior that has
in defining “intellectual disability.” The AAIDD,
been learned and is performed to meet society’s
first established in 1876, is the oldest interdisci-
expectation across living settings, including the
plinary professional association in the field of
home, school, work, and other community set-
intellectual and developmental disabilities (Tassé
tings (Schalock et al., 2010). Adaptive behavior
& Grover, 2013). The AAIDD has led the field in
is indexed on chronological age because as a
establishing the definition and diagnostic criteria
society, we have different expectations of all
for intellectual disability for over a century. Since
members of our community as they age.
its first definition of intellectual disability in
Adaptive behavior is a required criterion of all
1905, AAIDD has revised its definition 10 times
diagnostic systems defining intellectual disability
to reflect the changes in research and under-
(see American Psychiatric Association, 2000;
standing of this condition. The AAIDD definition
Schalock et al., 2010; World Health Organization,
of intellectual disability has historically been
1992). The American Association on Intellectual
adopted by all federal and state governments as
and Developmental Disabilities defined adaptive
well as the American Psychiatric Association’s
behavior as the collection of Conceptual, Social,
Diagnostic and Statistical Manual (DSM) in
and Practical Skills that have been learned by people
defining intellectual disability. It was not, how-
to function in their everyday lives (Luckasson et al.,
ever, until the 5th edition of its diagnostic man-
2002; Schalock et al., 2010). The three adaptive
ual, that AAIDD required the assessment of
behavior skill areas have been defined as follows:
adaptive behavior as a criterion for defining
(1) conceptual skills consist of communication
intellectual disability (Heber, 1959, 1961).
skills, functional academics, and self-direction;
The American Psychiatric Association has
(2) social skills consist of interpersonal skills,
historically adopted the AAIDD definition and
social responsibility, following rules, self-esteem,
diagnostic criteria of mental retardation in its
gullibility, naiveté, and avoiding victimization; and
Diagnostic and Statistical Manual of Mental
(3) practical skills consist of basic personal care
Disorders. The DSM first included adaptive
skills such as hygiene, domestic skills, health and
behavior in its diagnostic criteria of intellectual
safety as well as work skills.
disability in its 2nd edition of the DSM (Ameri-
can Psychiatric Association, 1968). In fact, in the
DSM-2, the American Psychiatric Association
M.J. Tassé (&)
actually refers the reader to the AAIDD 1961
The Ohio State University Nisonger Center, 1581
Dodd Drive, Columbus, OH 43210, USA definition of intellectual disability (see Heber,
e-mail: [email protected] 1961) for a fuller definition of intellectual

© Springer International Publishing AG 2017 201

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_14
202 M.J. Tassé

disability (see p. 14; DSM-2). In fact, the text in There are a number of studies that have exam-
the DSM-2 reads “Mental retardation refers to ined the changes in adaptive functioning among
subnormal general intellectual functioning which adults with developmental disabilities after dein-
originates during the developmental period and stitutionalization (Felce, deKock, Thomas, &
is associated with impairment in either learning Saxby, 1986; Fine, Tangeman, & Woodard, 1990;
and social adjustment or maturation, or both” Silverman, Silver, Sersen, Lubin, & Schwartz,
(p. 14). The DSM-2 defined adaptive behavior 1986). Consistently, a meaningful positive change
using the wording found in Heber (1959), which in adaptive functioning has been reported after
defined it as maturation, learning, and social moving from a more institutional living environ-
adjustment. The 2002 and 2010 editions of the ment to a less restrictive community setting
AAIDD Terminology and Classification Manual (Lakin, Larson, & Kim, 2011). Charlie Lakin and
returned to the psychometrically supported his colleagues did a review of the research litera-
framework of three adaptive behavior domains, ture that included 23 longitudinal studies pub-
including Conceptual, Social and Practical Skills lished between 1977 and 2010 and reported that all
(see Luckasson et al., 2002; Schalock et al., but three studies documented adaptive behavior
2010), originally proposed by Heber (1959, improvements when individuals moved to less
1961). Hence, the definition of intellectual dis- restrictive community-based living arrangements.
ability and the conceptualization of the adaptive The increase in adaptive behavior was especially
behavior construct has not really changed in the marked in the following skill areas: self-care,
last 50 years. domestic skills, and social skills.
As conceptual constructs, intelligence and
adaptive behavior are somewhat related but are
Relationship Between clearly distinct from one another (Keith, Fehrmann,
Intellectual Functioning Harrison, & Pottebaum, 1987; McGrew &
and Adaptive Functioning Bruininks, 1990). Thus, discrepancies in the
measurement of intelligence and adaptive
One of the forefathers of intelligence testing used behavior are to be expected. Not everyone with
the concept of “adaptation” in his definition of significant limitations in intellectual functioning
“intelligence” (Binet & Simon, 1905). For a long will have commensurately limited adaptive
time and still to this day—the two concepts are behavior and conversely, not everyone with sig-
sometimes intertwined but increasingly, the lar- nificant limitations in adaptive behavior will have
ger definition of intelligence is much more comparable significant limitations in intellectual
focused on mental capabilities and capacity functioning. Due to a wide range of measures for
whereas adaptive behavior is much more focused IQ and adaptive functioning, conducting research
on the actual performance of skills when needed on children with developmental disabilities and
and in response to societal demands and expec- interpreting the results can be challenging.
tations. The definition of intelligence adopted by However, some studies have reported a
AAIDD (Schalock et al., 2010) comes from the low-to-moderate correlation between the mea-
existing consensus position of prominent intelli- sures (Harrison & Oakland, 2015; Sparrow,
gence researchers and is defined as follows: Balla, & Ciccheti, 2005). A much small number
of studies have (Carpentieri & Morgan, 1996)
Intelligence is a very general mental capability that,
among other things, involves the ability to reason, demonstrated a high correlation, while others
plan, solve problems, think abstractly, comprehend have demonstrated that a larger portion of the
complex ideas, learn quickly and learn from experi- variance (35%) in adaptive functioning among
ence. It is not merely book learning, a narrow academic adults with intellectual disability can be
or test-taking smarts. Rather, it reflects a broader and
deeper capability for comprehending our surroundings explained by environmental variables other than
—‘catching on,’ ‘making sense’ of things, or ‘figuring intellectual ability (21%; Hull & Thompson,
out’ what to do. (Gottfredson, 1997, p. 13). 1980). As a way to examine the relationship
14 Adaptive Behavior 203

between these two constructs, some studies self-direction; communication; socialization;

generated tables of values needed for statistical motor; and work). Reflective of the times, the
significance between various IQs and adaptive 1936 Vineland scale had items measuring
behavior scores. They concluded that a difference the persons use of telephone Doll (1953) defined
of at least 10 or more standard points was needed the construct of social competence as “the func-
for a statistical difference between two measures tional ability of the human organism for exer-
when a 95% confidence level was adopted. They cising personal independence and social
concluded that it is not unreasonable to interpret responsibility” (see page 10). Doll’s vision of
the IQ-adaptive score discrepancy as indicative assessing social competence (what would later be
of a real underlying difference between cognitive called adaptive behavior) remains ingrained in
capacity and day-to-day performance. Research today’s definition of adaptive behavior and
findings have tended to document higher corre- associated standardized measures: “Our task
lation between these two constructs in individu- was to measure attainment in social competence
als with more severe to profound deficits in considered as habitual performance rather than
intellectual functioning than for those who pre- as latent ability or capacity” (see Doll, 1953;
sent with milder impairments in intellectual page 5). This interpretation is consistent with
functioning (Childs, 1982; Sattler, 2002). AAIDD’s current position that the assessment
Information about changes in IQ and adaptive of adaptive behavior focuses on the individual’s
measures over time and their relationship to each typical performance and not maximal ability
other is useful for diagnosing mental retardation, (see Schalock et al., 2010, 2012). This is a
predicting prognosis, and planning treatments. critical distinction with the assessment of intel-
Many questions, however, remain unanswered. lectual functioning, where we assess best or
IQ scores appear to be stable over time, yet they maximal performance.
might be somewhat different across IQ levels. According to Tassé et al. (2012), the critical
Changes in adaptive functioning have not been aspects of assessing adaptive behavior for the
well studied, especially for children with mental purpose of diagnosing intellectual disability
retardation. The general consensus in the field include:
appears to be that the IQ and adaptive behavior
constructs are distinct constructs but remain • assessing the individual’s typical behavior
constructs that have a modest relationship. Thus, (and not maximal performance);
adaptive behavior is a construct that provides • assessing the individual’s present adaptive
valuable information about the person’s func- behavior;
tioning that is not captured by measures of • assessing the individual’s adaptive behavior
intellectual functioning. in relation to societal expectations for his age
group and culture;
• using standardized adaptive behavior scales
Assessing Adaptive Behavior that were normed on the general population;
• using a convergence of information (i.e., several
Although the assessment of intellectual func- informants, informants from different life
tioning has a longer history (e.g., first standard- contexts [home, school, work, play/leisure],
ized test was developed in 1905) than the over time [childhood, adulthood], multiple
measurement of adaptive behavior, standardized modalities and sources [see listed below]);
tests of adaptive behavior have progressed sig- • using clinical judgment throughout the
nificantly since the first such scale was published assessment process.
(Vineland Social Maturity Scale, Doll, 1936).
The first version of the Vineland instrument The American Association on Intellectual and
consisted of items organized into six broad Developmental Disabilities has specified: “For
domains (self-help: general, dressing, and eating; the purpose of making a diagnosis or ruling out
204 M.J. Tassé

ID [intellectual disability], a comprehensive Pearson, Patton, & Mruzek, 2016), and

standardized measure of adaptive behavior (5) Diagnostic Adaptive Behavior Scale (Tassé
should be used in making the determination of et al., in press).
the individual’s current adaptive behavior func-
tioning in relation to the general population, The
selected measure should provide robust standard Adaptive Behavior Assessment
scores across the three domains of adaptive System—3rd Edition
behavior: conceptual, social, and practical
adaptive behavior” (Schalock et al., 2010; p. 49). The Adaptive Behavior Assessment System, 3rd
It is possible in some cases that the use of a Edition (ABAS-3; Harrison & Oakland, 2015) is
standardized assessment instrument will not be the third edition of the ABAS, first published in
possible. A standardized adaptive behavior scale 2000. The ABAS-3 is a comprehensive
is generally completed with the information from norm-referenced measure of adaptive behavior
a respondent. Multiple adaptive behavior scales that can be used for multiple purposes, including
can be completed, but generally only one the following: (1) assisting in the diagnosis and
respondent is used to complete the entire scale, classification of intellectual disability, develop-
per administration procedures. mental disabilities, learning disabilities, behav-
ioral disorders, and emotional disabilities;
(2) identify functional limitations of individuals
Standardized Adaptive with conditions such as autism spectrum disorder,
Behavior Scales attention deficit/hyperactivity disorder, and Alz-
heimer’s disease; (3) document a person’s eligi-
Adaptive behavior scales are used predominantly bility for special education services, social security
for two purposes. The first purpose is in assess- administration benefits, and placement for other
ing the person’s adaptive behavior for the pur- types of interventions; (4) assist with identifying
poses of establishing planning goals for and measuring progress toward adaptive behavior
intervention and habilitation. The other reason and daily functioning intervention goals, and
these standardized scales are used to assess a (5) use as an outcome measure in program evalu-
person’s adaptive behavior is to determine whe- ation and treatment studies. The ABAS-3 can be
ther or not there is a presence of significant used to assess the adaptive behavior of individuals
deficits or not for the purpose of determining if between the ages of 0 and 89 years. There are 5
the person meets criteria for a diagnosis of distinct questionnaire forms for the ABAS-3:
intellectual disability or developmental disability.
Some instruments have been developed to • Parent or Primary Caregiver Form (0–-
attempt to serve both functions while other 5 years old): can be used to assess adaptive
instruments focus on one aspect. We will briefly behavior of infants to preschoolers in the
describe the following adaptive behavior instru- home and other community settings. The
ments that are most suitable for use in assessing respondents for this form are generally the
adaptive behavior for the purpose of determining child’s parents or other primary caregivers.
intellectual disability: (1) Adaptive Behavior • Teacher or Daycare Provider Form (2–-
Assessment System—3rd Edition (ABAS-3; Har- 5 years old): can be used to assess adaptive
rison & Oakland, 2015), (2) Vineland Adaptive behavior of toddlers and preschoolers in a
Behavior Scale—2nd Edition (Vineland-II; childcare, preschool, and other similar setting.
Sparrow, Cicchetti, & Balla, 2005), (3) Scales of The respondents for this form are generally
Independent Behavior—Revised (SIB-R; Bruininks, the child’s teachers, daycare or childcare
Woodcock, Weatherman, & Hill, 1996), aides, or other similar childcare or preschool
(4) Adaptive Behavior Diagnostic Scale (ABDS, personnel.
14 Adaptive Behavior 205

• Parent Form (5–21 years old): this form is (ratings are obtained only when assessed person
used to assess adaptive behavior of children has a part-time or full-time employment). The
to adults in the home and other community standard scores for the 11 adaptive skill areas
settings. The respondents for this form are have intervention, treatment, and other similar
generally the child’s parents or other primary clinical utility.
caregivers. Since the ABAS-3 is a very recently pub-
• Teacher Form (5–21 years old): this form is lished revision, few independent reliability and
used to assess adaptive behavior of children validity data have yet been published. Harrison
to adults in their school settings (K-12). The and Oakland (2015) reported excellent psycho-
respondents for this form are generally the metric properties. The internal consistency of the
child’s teachers, aides, and other school ABAS-3 GAC ranges from 0.96 to 0.99 and from
personnel. 0.85 to 0.99 for the adaptive behavior domains
• Adult Form (16–89 years old): this form is (conceptual, social, and practical), yielding lean
used to assess adaptive behavior of adults in average standard error of measure (SEM) coeffi-
the home and across other community set- cients for the adaptive behavior domains and
tings. The respondents for this form can be GAC.
any number of individuals, including the
person her- or himself, family members, work
supervisors, peers, others who are familiar Vineland Adaptive Behavior
with the individual’s everyday functioning. Scale—3rd Edition
There are separate normative tables for the
Adult Form for self-ratings and ratings from The Vineland Adaptive Behavior Scale (3rd
third-party respondents. edition; Vineland-3; Sparrow, Cicchetti, &
Saulnier, 2016) is the third iteration of what is
Although the User’s Manual (Harrison & probably the better-known comprehensive stan-
Oakland, 2015) indicated that the administration dardized adaptive behavior scales. It was first
time is approximately 15–20 min, the more published as the Vineland Social Maturity Scale
realistically time of administration is probably (Doll, 1936) and then revised by Sparrow, Balla,
closer to 30–40 min to complete the Adult Form. and Cicchetti (1984) as the Vineland Adaptive
The ABAS-3 continues to be the only standard- Behavior Scales and again as the Vineland-II
ized adaptive behavior scale that provides norms (Sparrow, Cicchetti, & Balla, 2005). The
for self-reported adaptive behavior when using Vineland-3 was developed to assess adaptive
the Adult Form. behavior in individuals from 0 through 90 years
The ABAS-3 yields standard scores (Mean = old and has two versions: comprehensive and
100; standard deviation = 15) for each of the domain level—of each of the Vineland-3 forms:
three domains: Conceptual, Social, and Practical, Interview Form, Parent/Caregiver Form, and
as well as a standard score for General Adaptive Teacher Form. The comprehensive-level forms
Composite, which combines information from all offer a more in-depth evaluation much like the
items and provides an overall estimate of the previous Vineland-II version, providing results
person’s adaptive behavior. The ABAS-3 scoring across: adaptive behavior composite, domains,
also provides standard scores based on a subdomain, and item level. The domain-level
mean = 10 and standard deviation = 3 across versions provide a briefer set of items across each
potentially all 11 adaptive skill areas: commu- form and yields standard scores only at the
nication, functional academics, self-direction, domain level (Daily Living Skills, Communica-
leisure, social, community use, home/school tion Skills, and Social Skills), adaptive behavior
living, health and safety, self-care, motor (only composite, and item level. The domain-level
on forms for children <6 years old), and work forms can be used for diagnostic purposes,
206 M.J. Tassé

whereas the comprehensive-level forms can be • Comprehensive: 3–21 years; 333 items;
used for both diagnostic and intervention plan- administration time is approximately
ning purposes. 15–20 min.
• Domain Level: 3–21 years; 149 items;
• Interview Form: Provides a comprehensive administration time is approximately
assessment of individual adaptive behavior. 8–10 min.
The assessor administers the Vineland-3
Interview Form to a parent or caregiver It should be noted the administration times
using a semi-structured interview format. reported above are the times provided in the
This approach gathers more in-depth infor- Vineland-3 user’s manual and appear to be
mation with its open-ended questions (with or somewhat low-ball estimates of time needed to
without probes) and promotes rapport complete the different scales.
between the interviewer and respondent. The domain names of the Vineland-3 are
According to Sparrow et al. (2016): Communication Skills (i.e., expressive and
• Comprehensive: 0–90 years; 502 items; reception language skills, and written language),
administration time is approximately Socialization Skills (interpersonal skills, play and
35–40 min. leisure skills, and coping skills), Daily Living
• Domain Level: 3–90 years; 195 items; Skills (personal care, self-care skills, domestic
administration time is approximately skills, and work skills), and Motor Skills (is
23–27 min. optional and only used for children from 3 to
• Parent/Caregiver Rating Form: The 6 years old). These Vineland-3 domains do not
Parent/Caregiver Rating Form contains the align with the current tripartite model of adaptive
same content as the Interview Form, but uses behavior (Conceptual, Social, and Practical) used
a rating scale format. This alternative in existing diagnostic systems (e.g., AAIDD,
approach works when time or access to the DSM-5). Tassé, Schalock, Balboni, Spreat, and
respondent is limited. The Parent/Caregiver Navas (2016) proposed the following alignment of
Rating Form is also a valuable tool for pro- the Vineland-3 subscales with the existing tripar-
gress monitoring. The Vineland-3 Manual tite model of adaptive behavior: Communica-
suggests using the Interview Form for an tion = Conceptual Skills; Socialization = Social
initial assessment and then uses the Skills; and Daily Living Skills = Practical skills.
Parent/Caregiver Rating Form to track pro- The Vineland-3 also has an optional Mal-
gress over time. According to Sparrow et al. adaptive Behavior Domain that assesses the
(2016): presence and severity of problem behavior and
• Comprehensive: 0–90 years; 502 items; may be used for planning behavioral intervention
administration time is approximately around these behaviors but is not taken into
20–25 min. consideration when computing the person’s
• Domain Level: 3–90 years; 180 items; adaptive behavior level. The Vineland-3 has an
administration time is approximately extensive and representative normative sample. It
10–15 min. has a long-track record of use and strong psy-
• Teacher Form: Assesses adaptive behavior chometric properties. The structure of the
for students in preschool or school. The Vineland-3 provides standard scores with a
Teacher Form uses a questionnaire format mean = 100 and standard deviation = 15 for each
completed directly by the child’s teacher or of the four domains: Motor Skills (<6 years old),
daycare provider. The Teacher Form covers Daily Living Skills, Communication Skills, and
content that a teacher would observe in a Socialization Skills. The Vineland-3 continues to
classroom setting. According to Sparrow be available as a paper–pencil questionnaire
et al. (2016): administration but can now also be administered
electronically using Pearson’s Q-Global.
14 Adaptive Behavior 207

Scales of Independent Community scale that previously only had been

Behavior—Revised normed on adults with intellectual disability.
The ABDS is an interview-based scale that asses-
The Scales of Independent Behavior—Revised ses the adaptive behavior of individuals between
(SIB-R; Buininks et al., 1996) is a comprehen- the ages of 2 and 21 years and is normed on a
sive standardized adaptive behavior scale that typically developed population. The structure of
was standardized on a representative sample of the scale includes the three prevalent domains,
individuals from the general population. It was including Conceptual, Social, and Practical Skills.
developed for use with individuals from The scale administration is structured according to
3 months to 80+ years old and consists of three these three domains and each domain consists of
separate forms: Early Development (3 months– 50 discrete adaptive skills. The results obtained
8 years old), Comprehensive Form (3 months– yield standard scores with a mean = 100 and
80 years old) and Short Form. The Develop- standard deviation = 15 for each of the three
mental Form and Short Form are a different domains: Conceptual, Social, and Practical as well
subset of 40 items drawn from the full SIB-R as an overall Adaptive Behavior Index.
instrument. The SIB-R may be administered Having only been recently released, there
using the structured interview or a checklist exists no independent psychometric evaluation of
procedure where the respondent completes the the ABDS. The authors (Pearson et al., 2016)
questionnaire directly. report excellent psychometric properties, includ-
The SIB-R full-form contains two sections: ing internal consistency coefficients for all
adaptive behavior items and problem behavior domain and overall index standard scores above
items. The adaptive behavior contains a total of 0.90. The authors also reported a sensitivity
259 and yields a total standard scores called coefficient of 0.85 and specificity coefficient of
Broad Independence and 4 domain scores: Motor 0.99.
Skills, Social Interaction and Communication A review of the scale and its user’s manual
Skills, Personal Living Skills, and Community supports the use of the ABDS for use in
Living Skills. The problem behavior section obtaining standardized adaptive behavior
contains 8 distinct challenging behaviors rated assessment information for the purpose of mak-
for their frequency (0–5) and severity (0–4). The ing an intellectual disability determination.
SIB-R requires approximately 60 min to com-
plete and may be completed either as a rating
scale directly by the respondent or via an inter- Diagnostic Adaptive Behavior Scale
view between an interviewer and a respondent.
Although the reliability and validity psycho- The Diagnostic Adaptive Behavior Scale
metric data for the Comprehensive Form are (DABS; Tassé, Schalock, Balboni, Bersani,
adequate, the psychometric properties of the Borthwick-Duffy, Spreat, Thissen, Widaman, &
Short Form and Developmental Form are ques- Zhang, in press) was designed specifically for the
tionable (Maccow, 2001). purpose of being a standardized assessment
instrument to assist with the diagnosis of intel-
lectual disability. The DABS was designed from
Adaptive Behavior Diagnostic Scale its earliest conception to assist in the ruling in or
ruling out of intellectual disability (formerly
The Adaptive Behavior Diagnostic Scale (ABDS; mental retardation) by providing a comprehen-
Pearson, Patton, & Mruzek, 2016) is a recently sive assessment of an individual’s current adap-
released standardized adaptive behavior scale tive behavior and be most precise and reliable at
(Pearson, Patton, & Mruzek, 2016). It is a the cutoff score that is equivalent to 2 standard
replacement adaptive behavior scale for deviations below the population mean.
PRO-ED’s Adaptive Behavior Scale—Residential The DABS was developed based upon the
208 M.J. Tassé

conceptual framework of the AAIDD 2002 and response patterns and computes a standard score
2010 definition of adaptive behavior (Luckasson for each of Conceptual, Practical, and Social
et al., 2002; Schalock et al., 2010) and measures Skills as well as a Composite Score. The standard
the following three domains: Conceptual, Social, scores have a mean of 100 and standard deviation
and Practical Skills. of 15.
The DABS was standardized on a large At the time of completion of this chapter, the
national sample of typically developing children DABS was not yet available commercially. It is
and adults between the ages of 4 and 21 years expected that the American Association on
(inclusively). The DABS was developed across a Intellectual and Developmental Disabilities will
period of approximately 7 years. There are be making the DABS available in late 2017.
numerous steps involved in the development of
such a scale. The interested reader is encouraged
to consult the DABS Manual (Tassé et al., in In Addition to the Use of Standardized
press) for a detailed description of the develop- Measures
ment and standardization of the DABS. This
chapter summarizes only essential elements of The use of standardized measures of adaptive
the scale’s development. behavior should not be used in isolation. There
The DABS was specifically developed to tap are many instances where the use of standardized
the three domains (Conceptual, Social, and Prac- adaptive behavior scales may be insufficient or
tical Skills) of adaptive behavior based on current impossible. This might be because there are no
factor analytic work and was developed to be a reliable respondents available to provide com-
relatively shorter and more efficient assessment prehensive information on the assessed person’s
instrument that focuses solely on the diagnosis of adaptive behavior, the respondents providing the
intellectual disability and not on identifying adaptive information can only provide partial
programming/intervention or support needs. The information, or the evaluator cannot ensure the
DABS’ item pool includes relevant items that proper administration of the instrument per test
relate directly to the concepts of gullibility, vul- guidelines. In these instances, alternate sources
nerability, and social cognition (that involve of adaptive behavior information should be ref-
social perception, the generation of strategies for erenced as complementary or alternative sources
resolving social problems, and consequential of the person’s adaptive behavior.
thinking)—often lacking from existing measures The AAIDD (Schalock et al., 2010, 2012) and
of adaptive behavior. One major innovation of the Olley (2015) recommend using several of the
DABS is that it was developed and its scoring is following different sources of adaptive behavior
entirely based on item response theory (IRT). information as part of a comprehensive adaptive
The DABS consists of a total of 75 items (25 behavior assessment:
items are administered in each of the three
domains) and is administered via face-to-face • medical records.
interview between a professional (i.e., inter- • school records.
viewer) and a respondent (e.g., parent, grand- • employment records.
parent, caregiver, teacher). The estimated • previous psychological evaluation reports and
administration time for the DABS Interview raw data (adaptive behavior, IQ, achievement,
varies slightly depending on the interviewer and mental health, employment, career counsel-
number of persons being interviewed simultane- ing, etc.).
ously but on average, the DABS administration • therapy or intervention reports and records
is approximately 30 min. The scoring of the (e.g., mental health, habilitation services,
DABS is done using a computerized scoring employment support, developmental disabil-
system that uses IRT algorithms to analyze the ity services).
14 Adaptive Behavior 209

• drivers and motor vehicle bureau records. as school, work, leisure, community). The inter-
• information from state or federal offices that viewer or person responsible for conducting the
might have eligibility information (social adaptive behavior assessment also has the
security administration, state developmental responsibility of ensuring that the respondents
disabilities department, medicaid). are able to provide reliable and accurate infor-
• in criminal cases: affidavits, declarations, mation. The use of clinical judgement and pro-
transcripts of testimony or interviews, prison fessional experience with clinical interviews and
records. the assessment of adaptive behavior will guide
• informal interviews with individuals who the evaluator in making these determinations.
know the person and had the opportunity to There may be situations where there is no
observe the person in the community, etc. respondent available who has knowledge of the
• interview with the defendant/assessed person. assessed individual that is sufficiently compre-
hensive to be able to complete a standardized
All types and sources of information should adaptive behavior scale. In these instances, the
be reviewed and analyzed critically for content, assessor will need to rely more heavily on the use
relevance, and accuracy. One should also ascer- of respondents who provide qualitative informa-
tain the comparison group when determining tion in discrete areas of life (e.g., school or work
ability and limitations. “For example, in some or neighborhood). In such instances, the use of
special education programs, a ‘C’ grade denotes multiple respondents and sources of adaptive
something very different in achievement level behavior information (see school records, medi-
than a ‘C’ grade granted in a regular education cal history, DMV, etc.) are even more important.
classroom” (Schalock et al., 2010; p. 48).

Retrospective Assessment
Respondents
The diagnosis of intellectual disability implicitly
Adaptive behavior scales are typically completed requires two conditions related to the adaptive
via input and observations of the assessed indi- behavior criterion: (1) adaptive functioning (i.e.,
vidual’s adaptive behavior and either directly rate Conceptual, Social, Practical Skills) is defined as
items on an adaptive behavior scale or provide behavior that is learned and typically performed to
this information via an interview with an adap- meet society’s expectations/demands for individ-
tive behavior assessor who is responsible for the uals of his chronological age and cultural group,
adaptive behavior assessment. Generally, the best and (2) the assessment of the individual’s present
respondents are typically adults who know well adaptive functioning. These two conditions,
the assessed individual and have the most however, are often at odds when assessing adap-
knowledge and have had opportunities to tive behavior in criminal cases where the individ-
observe the assessed individual in his or her ual’s “present” adaptive functioning can only be
everyday functioning across settings (Tassé, assessed against life in prison (Tassé, 2009). It is in
2009). Adaptive behavior respondents are most these situations that an expert will need to conduct
often selected among the assessed person’s a retrospective evaluation of the individual’s
family (e.g., parents or guardians, grandparents, adaptive functioning to a time period when he
older sibling, aunts/uncles), spouse, and/or lived in the community (i.e., prior to incarcera-
roommates. Other individuals who can also tion). Using retrospective assessment has been
provide valuable adaptive behavior information endorsed by AAIDD (Schalock et al., 2010, 2012).
include neighbors, teachers, coworkers, supervi- Again, adaptive behavior is defined as con-
sors, coaches, and others who have had multiple ceptual, social, and practical adaptive behavior
opportunities to observe the assessed person that is learned and performed to meet community
functioning in everyday community settings such standards of personal independence and social
210 M.J. Tassé

responsibility, in comparison with same-age 3. Assess adaptive behavior:

peers and of similar sociocultural background • using multiple informants and multiple
(APA, 2013; Schalock et al., 2010). The assess- contexts;
ment of a person’s adaptive behavior is done with • recognizing that limitations in present
a combination of standardized adaptive behavior functioning must be considered within the
scales, clinical evaluations, and interviews of context of community environments typi-
significant others, and a thorough review of all cal of the individual’s peers and culture;
available records. The historical records can • with awareness that many important social
inform the expert’s clinical judgment regarding behavioral skills, such as gullibility and
prong 3, but often, a retrospective method of naiveté, are not measured on current
conducting adaptive behavior interviews can adaptive behavior scales;
provide two valuable sources of information: • using an adaptive behavior scale that
assessed person’s adaptive functioning level prior assesses behaviors that are currently
to incarceration (i.e., while still living in the viewed as developmentally and socially
community) and provide an assessment of the relevant;
person’s adaptive functioning prior to age 18. • understanding that adaptive behavior and
Using a retrospective assessment to make a problem behavior are independent con-
determination of intellectual disability relies structs and not opposite poles of a con-
heavily upon the informant’s memory of the tinuum; and
assessed individual’s functioning and their ability • realizing that adaptive behavior refers to
to accurately recall this information. Sometimes typical and actual functioning and not to
in when a person has been living with their aging capacity or maximum functioning.
parents and not receiving any paid services and 4. Recognize that self-ratings have a high risk of
supports cases, the retrospective recall is going error in determining “significant limitations in
back 15–20 years. The above-mentioned adap- adaptive behavior.” However, consistent with
tive behavior scales are the preferred measures to the need for multiple informants or respon-
use in assessing adaptive behavior and have all dents, self-ratings can be used under the fol-
been standardized using contemporary psycho- lowing cautions:
metric methods. Although there are a number of • people with ID are more likely to attempt
authors who have appropriately cautioned users to look more competent and “normal”
regarding the dangers of breaking standardization than they actually are—which is some-
and the validity of the obtained ratings from a times incorrectly interpreted as “faking”;
retrospective adaptive behavior assessment (Stevens • people with ID typically have a strong
& Price, 2006), the author of this chapter agrees acquiescence bias or inclination to say
with others (Macvaugh & Cunningham, 2009; “yes” or try to please the authority figures;
Olley & Cox, 2008) that with proper precautions and
and critical considerations experts should be able • ID is a social status that is closely tied to
to use retrospective assessments when making an how a person is perceived by peers, family
intellectual disability determination using a members, and others in the community.
retrospective approach. 5. Conduct a longitudinal evaluation of adaptive
The AAIDD User’s Guide (Schalock et al., behavior that involves multiple raters, very
2012) provided some guidelines to follow when specific observations across community
conducting a retrospective assessment/diagnosis environments (especially in regard to social
of intellectual disability: competence), school records, and ratings by
peers during the developmental process.
1. Conduct a thorough social history. 6. Do not use past criminal behavior or verbal
2. Conduct a thorough review of all available behavior to infer level of adaptive behavior or
records (see above). about having ID.
14 Adaptive Behavior 211

Tassé (2009) proposed the following instruc- a diagnosis of intellectual disability. That means,
tions for the expert conducting the retrospective regardless of the presence of any other coexisting
adaptive behavior interview: behavioral or mental illness (such as antisocial
personality disorder, to mention one), a diagnosis
• Identify a clear time period during which you of intellectual disability should be made if the
want the informant to focus their report of the individual meets all three diagnostic prongs of
individual’s adaptive behavior. For example, intellectual disability, regardless of etiology or
you might instruct the respondent to recall the comorbid conditions. Holland and his colleagues
assessed individual before he was (2002) in fact reported that comorbidity of
incarcerated. intellectual disability and antisocial behavior or
• Build rapport with the informant and ask her disorder is quite common in the criminal justice
or him to think about where the assessed population. As it pertains to a diagnosis of “an-
person was living at that specified time, what tisocial personality disorder” explaining the def-
school/grade he was in, where was he work- icits of adaptive behavior and precluding a
ing, etc. These points of reference will be diagnosis of intellectual disability, firstly, they
important to assist the respondent to recall can coexist. Secondly, a diagnosis of intellectual
that time period. disability originates before the age of 18 years
• Periodically, remind the respondent that she (see AAIDD; Schalock et al., 2010; APA, 2013),
or he is assessing the individual’s adaptive but the diagnosis of antisocial personality disor-
behavior in that specific time period. der is not made until after the age of 18 years
(DSM-5; APA, 2013). Again, there is no exclu-
In the end, using retrospective assessment sionary criterion between intellectual disability
may be the only method available to establish and antisocial personality disorder. They can and
whether the person’s adaptive skill deficits were do coexist.
present during the developmental period. It is the People with intellectual disability can acquire
responsibility of the clinician to use her or his a mental illness, substance abuse disorder, or
clinical judgment in reviewing the totality of the other secondary health conditions. In fact, people
available clinical information in reaching a with intellectual disability are 3–4 times more
well-founded conclusion regarding the age of vulnerable than people in the general population
onset criterion and the overall determination of to presenting with a comorbid mental or behav-
intellectual disability. ioral disorder (Cooper, Smiley, Morrison, Wil-
liamson, & Allan, 2007; Fletcher et al., 2007;
Reiss, 1994; Rojahn & Tassé, 1996). Substance
Deficits of Adaptive Behavior abuse by people with intellectual disability is not
Can Be Explained by Other Factors as common overall but is more prevalent in
adults with intellectual disability intersecting
It is important to recall one of the AAIDD with the criminal justice system (Chapman &
assumptions regarding the definition of intellec- Wu, 2012; McGillivray & Moore, 2001). For
tual disability (see Schalock et al., 2010): adults with an intellectual disability and sub-
Adaptive behavior deficits can and do coexist stance abuse problem increases the likelihood of
with mental illness and other behavioral disor- criminal behavior and arrests for criminal activ-
ders. The presence of other mental illnesses or ities (Holland et al., 2002). Sadly, many adults
behavior health problems do not dismiss or with intellectual disability make poor choices and
explain away deficits in adaptive behavior nor do end up using and abusing alcohol and drugs. To
they negate a diagnosis of intellectual disability. use the presence of a substance abuse disorder as
The DSM-5 (APA, 2013) is categorical, as it has a reason to rule out or explain the presence of
been in previous iterations of its diagnostic deficits in adaptive behavior or intellectual dis-
manual, there are NO exclusionary conditions to ability is clearly tautological. These conditions
212 M.J. Tassé

can and do cooccur, especially in a forensic independent performance of a discrete adaptive

population. Generally speaking, when someone behavior captures the person’s knowledge or
stops using alcohol and drugs, they will not be prior learning of the behavior, recognition that
cured of their intellectual disability. the behavior needs to occur (e.g., “finds the
bathroom in a public place”), their willingness or
motivation to perform said behavior (e.g.,
Adaptive Behavior Assessment “chooses not to say mean or embarrassing
Is Objective things”), the degree of prompting or assistance
the individual needs to perform the behavior
There is a clear distinction to be made between adaptive (e.g., “performs behavior when needed
information that is provided by a subject and and without reminders or help”).
subjective information. Yes, adaptive behavior Adaptive behavior scales measure a complex
assessment relies on the reporting of observed array of cognitive and behavioral aspects to
adaptive behavior, but this is done in a rigorous, adaptive functioning. And in so doing is inter-
standardized, and objective manner. When the ested in measuring not what does the person
respondent is asked about the assessed person’s know or do they know how to do but rather do
adaptive behavior, they are asked about behav- they do it. For example, there is an item in the
iors that they have directly observed. They are Home-Living Scale on the ABAS-3 that asks
not asked to estimate or imagine whether he “folds clean clothes.” The assessed behavior is
could do such and such a behavior. In fact, if not “can…” or “does he know how…” but rather
they do guess on more than 2 items in one [does he] fold clean clothes without prompts or
domain, that informant’s information will be help? This is an important difference in the
viewed as less reliable than one that has no assessment of adaptive behavior. If a person has
guessing. Having a standardized set of items, learned a behavior and possesses a skill but
administered in a systematic fashion and scored chooses not to perform that behavior when nee-
in a prescribed manner that then yields results ded or expected, he or she does not get full credit
that are compared and converted statistically to a for that adaptive behavior. For the purposes of
normative scale, yields quite objective results. In assessing adaptive behavior to make a determi-
fact, standardized adaptive behavior scales yield nation of intellectual disability we assess “what
standardized results that are presented on the does this person typically do.” If we were con-
same normative metric as IQ scores, where an ducting an assessment of adaptive behavior for
average score = 100 and the population devia- the purpose of intervention planning, we would
tion score = 15 (Harrison & Oakland, 2015; likely follow-up our initial assessment with a
Sparrow, Cicchetti, & Balla, 2005). series of follow-up queries to determine whether
the person does not perform the behavior due to a
lack of knowledge, skill, or willingness. Of
Typical Performance not Potential course, it takes the combination of many items
where the skill/behavior is lacking to yield a
Adaptive behavior assessment is focused on what standard score that is significantly subaverage. In
a person typically does and the degree to which contrast to adaptive behavior, the assessment of
they perform that behavior independently, which intellectual functioning seeks to capture the per-
aide or support (Schalock et al., 2010; Tassé, son’s fullest potential and capacity. Further
2009). Adaptive behavior scales provide clear illustrating that these are two different and distinct
guidance that the person providing information constructs of human functioning and both are
regarding their observation of the person per- necessary to make a determination of intellectual
forming a behavior or skill. Hence, the disability (Tassé, Luckasson, & Schalock, 2016).
14 Adaptive Behavior 213

Measurement Error indicator for evaluating the effectiveness of

intervention programs across the life span.
In the same way, standardized tests of intellectual Adaptive behavior is what Henry Leland once
functioning yield observed scores that should be referred to as the skills that make one “invisible”
interpreted with clinical judgment and consider- in society. The more adaptive skills we learn and
ation for all sources of measurement error, so do perform, the less we stand out. Hence, teaching
the results from adaptive behavior scales. The adaptive skills to persons will equip them to
observed scores should be interpreted within the better respond to their community’s demands and
accepted recommended practice (see Schalock society-at-large’s expectations. Adaptive skills
et al., 2010) of 95% confidence interval or are translatable into better coping skills, con-
plus/minus 2 the test’s standard error of mea- sumer skills, social interaction, personal health
surement. Unlike with performance on tests of care, hygiene, cooking and home-living skills,
intelligence, current research on adaptive employment, etc. When Schalock and his col-
behavior assessment results does not indicate a leagues (2010) assert the assumption/aspiration:
rise in obtained scores or significant inflation in “With appropriate personalized supports over a
results due to obsolescence of adaptive behavior sustained period, the life functioning of the per-
test norms. Because of the nature of adaptive son with intellectual disability generally will
behavior assessment, practice effects are a non- improve” (p. 1), what they are talking about are
issue. Adaptive behavior assessment also seems the person’s adaptive behavior. With proper
to be immune to the phenomenon of rising scores intervention and supports, any person can learn
over the years following norming of standardized and improve their ability to meet society’s
tests, as has been clearly documented with stan- expectations. This is important because we can
dardized tests of intellectual functioning (i.e., teach anyone with an intellectual disability, no
Flynn effect). matter their level of ability/disability, new
adaptive skills that will contribute to their
improved independence/interdependence and
Summary resulting quality of life.

All major diagnostic systems (AAIDD & APA)

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Tassé, M. J. & Grover, M. D. (2013). American Geneva: Author.
Association on Intellectual and Developmental Dis-

Author Biography journals, book chapters, and books in the area of intellectual
Marc J. Tassé, Ph.D., is the Director of The Ohio State and developmental disabilities. He also has co-authored sev-
University Nisonger Center, a University Center for Excel- eral published standardized tests, including scales assessing
lence in Developmental Disabilities and a Professor in the adaptive behavior, problem behavior, and support needs. He
Departments of Psychology and Psychiatry. Marc has more is the senior author of the Diagnostic Adaptive Behavior
than 25 years of experience in conducting research and pro- Scale. Marc is a Fellow of the American Association on
viding clinical services in the field of intellectual disability Intellectual and Developmental Disabilities (AAIDD),
(ID), autism spectrum disorder (ASD), and other related American Psychological Association (APA), and Interna-
developmental disabilities (DD). He has been a PI/co-PI on tional Association for the Scientific Study of Intellectual and
more than a dozen grant-funded projects, including funding Developmental Disabilities (IASSIDD). Marc is a
from federal, state, foundations and other sources. His pub- Past-President of the American Association on Intellectual
lications include more than 125 articles in peer-reviewed and Developmental Disabilities.
 Problem Solving and Self-advocacy
15
Michael L. Wehmeyer and Karrie A. Shogren

Introduction Conceptualizing Problem Solving

and Self-advocacy
This chapter and Chap. 16 address the closely
related concepts of problem solving, self- Problem Solving
advocacy, goal setting and attainment, and
self-regulation. The former two, the topics of this Navigating life’s problems is a hallmark of
chapter, share a common thread: at the broadest adulthood in most societies. Most people learn to
level, they involve how one responds to threats solve problems by watching others (usually
and opportunities in one’s environment. parents or teachers) solve problems and through
Problem-solving skills enable one to sort out the the experience of solving small problems, then
nature and extent of the problem and generate larger and larger problems. As discussed in
solutions, while self-advocacy skills apply those Chaps. 5 (self-determination) and 11 (decision
skills to advocating on one’s own behalf or on making), problem solving is integral to becoming
behalf of others. In the next section, we examine self-determined and engaging in decision making
definitions of both of these constructs, research processes.
that has been conducted in the context of prob- What Is Problem Solving? Most simply put,
lem solving and self-advocacy for people with a problem is a task, activity, or situation for
intellectual disability, and then conclude by which a solution is not immediately identified,
examining interventions and supports that enable known, or obtainable. Solving a problem, there-
people to solve problems and self-advocate. fore, is the process of identifying solutions that
resolve the initial perplexity or difficulty and
selecting the best such solution. Because most
people equate a “problem” with something neg-
ative (e.g., a problem child and financial prob-
lems), it may be more useful to think of problem
solving within the context of goal-driven
behavior, where problem solving seeks to
bridge the gap between a person’s current situa-
tion and a desired outcome. Bransford and Stein
M.L. Wehmeyer (&)
K.A. Shogren (1993) suggested that “a problem exists when
University of Kansas, 1200 Sunnyside Ave., Rm there is a discrepancy between an initial state and
3136, Lawrence, KS 66045, USA a goal state, and there is no ready-made solution
e-mail: [email protected]
for the problem solver” (p. 7). When working
K.A. Shogren toward goals and self-regulating one’s actions in
e-mail: [email protected]

© Springer International Publishing AG 2017 217

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_15
218 M.L. Wehmeyer and K.A. Shogren

service of goals, situations will be encountered situations. In social situations, people engage in
where the best solution or pathway to goal social and interpersonal interactions that tend to
attainment is unknown, not clear, or not avail- be dynamic and require nuanced understandings
able. Problem solving is the process of identify- to identify, generate, and evaluate possible
ing the solutions to remove the discrepancy solutions (Chang, D’Zurilla, & Sanna, 2004;
between the initial and goal states. Once you Elias & Tobias, 1996). In everyday or practical
have identified all possible solutions, you must problem solving, there are also dynamic situa-
then make a decision about which solution is the tions or tasks, but more focus is on the com-
best for your current needs. plexity inherent in everyday environments and
The process of navigating problems and tasks across environments (Berg, Skinner, & Ko,
engaging in self-regulated, goal-directed actions 2009; Sinnott, 1989). Researchers have found
gives rise to causal action. The process of solving that everyday problem solving emphasizes the
a problem is generally assumed to involve five importance of being able to generate more than
steps: (a) identifying and defining the problem, one potential solution, particularly when dealing
(b) listing possible solutions, (c) identifying the with a dynamic or complex situation, and the role
impact of each solution, (d) making a judgment of evaluating alternate solutions using logical
about a preferred solution, and (e) evaluating the thinking skills and defining or redefining of the
efficacy of the judgment (D’Zurilla & Goldfried, problem to enable the generation of alternative
1971). solutions (Pezzuti, Artistico, Chirumbolo,
While early research focused on the applica- Picone, & Dowd, 2014).
tion of these steps to solving problems with finite In addition to the specific skills needed to solve
solutions, most research has focused on appli- complex problems, researchers have emphasized
cations of problem solving in more complex the role of self-appraisal in solving problems,
situations, in which there is not a finite solution, suggesting that how a person perceives their
and when environments are highly dynamic. ability to solve problems directly influences their
Some researchers have described this as complex application of problem-solving skills across situ-
problem solving. Complex problem solving ations (Butler & Meichenbaum, 1981). The terms
requires the use of cognitive skills related to problem solving and decision making are often
acquiring information in dynamic situations, used synonymously, although that usage is tech-
generating novel solutions, and representing nically incorrect. Decision making is a process of
complex information. Buchner (1995) defines selecting or coming to a conclusion about which
complex problem solving as “the successful potential solution is the best. The problem-solving
interaction with task environments that are process “starts earlier” as it identifies possible
dynamic (i.e., change as a function of user’s solutions that might be the focus of a decision
intervention and/or as a function of time) and in making process.
which some, if not all, of the environment’s
regularities can only be revealed by successful
exploration and integration of the information Self-advocacy
gained in that process” (p. 14). Within these
dynamic environmental situations, Self-advocacy involves, quite simply, advocating
problem-solving skills are critical to acting for oneself or for a cause that one supports.
agentically and making progress toward one’s Algozzine, Browder, Karvonen, Test, and Wood
goals. It is necessary to integrate information and (2001) found that teaching self-advocacy skills
make a judgment about a preferred solution to was among the most common activities related to
continue to make progress toward one’s goals as promoting self-determination among students
the environment changes. with disabilities. Test, Fowler, Wood, Brewer,
Researchers have focused on complex prob- and Eddy (2005) developed a conceptual
lem solving in social situations and in everyday framework of self-advocacy based on the
15 Problem Solving and Self-advocacy 219

definitions found in the literature and stakehold- focused on promoting self-advocacy, goal set-
ers’ input that includes four components: ting, problem solving, and related skills that
(a) knowledge of self, (b) knowledge of rights, would enable students to play a meaningful role
(c) communication, and (d) leadership. In this in their planning process. The IEP meeting pro-
chapter, we consider two “forms” of vides an excellent context for teaching and sup-
self-advocacy, general self-advocacy skills and porting self-advocacy skills, as students can learn
self-advocacy through student involvement in how to get what they want through interactions
educational planning. with other IEP team members. There are several
General Self-advocacy Skills. There is an student involvement processes that have evi-
array of skills or areas of knowledge that have dence with regard to their efficacy that will be
been included in discussions pertaining to discussed subsequently.
teaching general self-advocacy skills, beginning
with communication skills, which are, as Test,
Fowler, Wood, Brewer, and Eddy (2005b) noted, Problem Solving and People
critical to successful self-advocacy. Gould (1986) with Intellectual and Developmental
suggested that secondary-age instruction in Disabilities
self-advocacy should include instruction and
practice in some or all of the following areas: Perhaps because many people do not expect
people with intellectual and developmental dis-
• assertive behavior abilities to engage in problem solving, a task that
• public speaking skills is typically construed as cognitively complex,
• leadership skills there have been a limited number of studies
• decision making skills examining issues pertaining to problem solving
• problem resolution skills with this population. The earliest research with
• legal and citizenship rights and people with intellectual disability pertaining to
responsibilities problem solving examined individual differences
• transition planning in cognitive problem solving. This research was
• goal setting and attainment not focused on promoting problem-solving skills,
• using community resources but instead on problem-solving capacity (or
• communication incapacity) as differentiated among people with
intellectual disability as a function of level of
Again, the overlap between topics such as impairments. This research documented that
goal setting and attainment, problem solving, people with intellectual disability exhibited a
self-regulation, and self-advocacy shows up in relatively inflexible pattern of problem solving
this list. We will look at practices that have been (Ellis, Woodley-Zanthos, Dulaney, & Palmer,
shown to be effective in promoting these areas of 1989; Ferretti & Butterfield, 1989; Ferretti &
self-advocacy in a subsequent section. Cavelier, 1991; Short & Evans, 1990). This
Self-advocacy through Student Involve- pattern, labeled cognitive rigidity by Gestalt
ment. When, in the 1990 reauthorization of the psychologists, “is characterized by repetition of
Individuals with Disabilities Education Act past strategies to solve current problems without
(IDEA), the transition mandates required that adapting to new stimuli or new task demands”
students with disabilities be invited to their (Short & Evans, 1990, p. 95). Wehmeyer and
Individualized Education Program (IEP) meeting Kelchner (1994) determined that people with
when transition-related goals were to be dis- intellectual disability were able to generate
cussed. This initiated a focus on efforts to solutions to problems, but, in general, generated
actively engage and involve young people in fewer and less complex means to solve problems
their educational and transition planning (Weh- than their peers without intellectual disability.
meyer & Sands, 1998). Essentially, such efforts These authors argued that the study confirmed
220 M.L. Wehmeyer and K.A. Shogren

that people with intellectual disability could problem-solving styles. Edeh and Hickson
solve problems, and that discrepancies between ascribe these differences to cultural differences
the number and complexity of solutions gener- and emphasize the importance of considering
ated by people with intellectual disability, when cultural context issues when teaching youth with
compared to their non-disabled peers, were as intellectual and developmental disabilities
much a function of opportunity and experience to problem-solving skills.
learn to problem solve as they were capacity In general, we know little about problem
issues. A few studies from that era suggested that solving and people with intellectual disability. It
given opportunities to learn problem-solving is clear that without instruction and supports,
skills, people with intellectual disability would people with intellectual disability will not be able
benefit (Castles & Glass, 1986) and a few others to be as effective at identifying problems and
incorporated efforts to promote problem-solving generating solutions as are their non-disabled
skills into real-world situations. Park and peers. It is also evident, though, that people with
Gaylord-Ross (1989) showed that adults with intellectual disability can acquire these skills if
intellectual disability provided problem-solving provided adequate instruction and support. Those
instruction had improved employment outcomes, will be discussed in a subsequent section in the
and Tymchuk, Andron, and Rahbar (1988) chapter.
showed that teaching mothers who had intellec-
tual disability how to solve problems in relation
to their children’s health resulted in better par- Self-advocacy and People
enting skills. with Intellectual and Developmental
More recent research has found that people Disabilities
with intellectual disability can, if provided
opportunities, exhibit problem-solving skills Research on General Self-advocacy
(Erez & Peled, 2001). Cote et al. (2010) and Skills
Agran, Blanchard, Wehmeyer, and Hughes
(2002) conducted single-case design studies As was noted, promoting self-advocacy and its
using the Self-determined Learning Model of related components have been among the most
Instruction process (discussed in Chap. 5 and, in frequently implemented practices in efforts to
less detail, later in this chapter) to teach promote self-determination. Several literature
self-regulated problem-solving skills to youth reviews provide a comprehensive look at
with intellectual and developmental disabilities research pertaining to self-advocacy. In what was
in educational contexts. Both studies found that among the first of these, Merchant and Gajar
students were able to learn and use problem- (1997) conducted an analysis of the literature on
solving skills. Cote and colleagues found that self-advocacy skills programs for students with
instruction enabled youth with intellectual and learning disabilities, and concluded that such
developmental disabilities to improve in their efforts were effective in promoting self-
ability to identify problems and possible solu- advocacy, but that there were too few such
tions. Edeh and Hickson (2002) investigated studies available. Algozzine et al. (2001) found
cross-cultural differences in problem solving of 19 studies that focused on self-advocacy and
people with intellectual disability. All partici- that met the criteria for their meta-analysis of
pants were able to generate solutions to prob- self-determination-related skills. This
lems, with participants from Nigeria actually meta-analysis did not analyze effect sizes for
evidencing more self-generated solutions to individual topic areas (e.g., problem solving,
problems than their peers with intellectual dis- goal setting, etc.), but for overall efforts to pro-
ability from the US (both white and mote self-determination-related skills, and found
African-American), but also evidenced more that both group design and single-case studies
cooperative (compared to individualistic) showed moderate to strong effects. Test, Fowler,
15 Problem Solving and Self-advocacy 221

Brewer, and Wood (2005a) conducted a literature In a review of most of studies examining
review of 25 studies specific to self-advocacy student involvement up 2005 (after which the
and found “evidence that individuals with vary- aforementioned RCT studies began to be pub-
ing disabilities and ages can learn self-advocacy lished), Test et al. (2004) conducted a narrative
skills” (p. 120). In general, then, there is evi- review of the literature to examine the impact of
dence that teaching general self-advocacy skills practices used to promote student involvement.
to students with disabilities, including students They found 16 studies, coding each study for six
with intellectual and developmental disabilities, variables, including (a) purpose, (b) partici-
has positive benefit, though there is clearly need pants/setting, (c) design, (d) dependent vari-
for more methodologically sophisticated research ables, (e) independent variable, and (f) results.
in this area. The purpose of a majority of the studies was to
determine the efficacy of a specific curriculum on
student involvement and participation in their
Research on Self-advocacy Through IEP meetings. Several studies compared the
Student Involvement effects of student-led or student-directed IEPs to
person-centered planning processes. Participants
To a large degree, the impetus for research in involved students across disability categories,
promoting general self-advocacy skills was the including adolescents with intellectual disability
same as that for research on promoting (20% of population). Almost all studies were
self-advocacy through student involvement. In conducted in a special education resource room
the early 1990s, the Individuals with Disabilities or a segregated special education classroom. In
Education Act (IDEA) was reauthorized and all studies using a quantitative (n = 12) research
included language pertaining to the provision of design, students showed increased involvement
transition services and the need for such services in educational planning after instruction and, for
to be based upon student needs, taking into those that measured it, enhanced self-
account student interests and preferences. The determination. Social validation measures indi-
law required that students for whom transition cated that students valued the opportunity to
services were to be discussed at their annual learn to be involved and, in one study, teachers
meeting be invited to the meeting. This, in turn, perceived students to be more self-confident and
ushered in a focus on the design and evaluation better able to self-advocate (Mason,
of efforts to promote self-advocacy and to pro- McGahee-Kovac, Johnson, & Stillerman, 2002).
mote student involvement in transition planning. Despite these promising findings, a secondary
There is a relatively large literature base on analysis of the National Longitudinal Transition
the positive impact of promoting student Study-2 found that only 3.3% of students with
involvement in transition and educational plan- intellectual disability had a role in leading their
ning, though there are two distinct “classes” of transition planning meeting (significantly lower
studies. Most studies, exemplified by a literature than their peers with learning disabilities or
review by Test et al. (2004), discussed subse- emotional/behavioral disorders), were less likely
quently, lacked the research rigor to provide to provide input during their transition planning,
causal evidence of the impact of such efforts. and were more likely to report no progress
More recently, data has emerged from random- toward transition goals than the other two groups
ized control studies for two specific interventions of students (Katsiyannis, Zhang, Woodruff, &
(Whose Future is it Anyway? and The Self- Dixon, 2005).
Directed IEP), providing causal evidence of As mentioned, the literature covered to this
impacts. The latter will be discussed in the sec- point on promoting self-advocacy through stu-
tion, below, discussing efforts to promote dent involvement is limited by the nature of the
self-advocacy through student involvement. research (quasi-experimental pre-/post-
222 M.L. Wehmeyer and K.A. Shogren

intervention designs, some without a control (c) identifying barriers to solving the problem, and
group, single-case designs with an insufficient (d) identifying the consequences of each solution.
number of students or power). Studies conducted Like most problem-solving models, the SDLMI
subsequently (discussed below) have provided problem-solving sequences are derived from a
more evidence of the positive impact of student five-step model of D’Zurilla (1986): (a) problem
involvement on student engagement in planning orientation, (b) problem definition and formulation,
meetings, student self-advocacy, and student (c) generation of alternative solutions, (d) choice of
self-determination. solution, and (e) solution implementation. And, it
is instruction on these steps, whether in the context
of processes like the SDLMI or curricula like the
Promoting Problem Solving ESCAPE-DD or just in the context of learning to
solve day-to-day problems, that lead to enhanced
Interventions to Promote Problem problem-solving skills.
Solving

There have been two illustrations in previous General Problem-Solving Instruction

chapters of this text of the types of interventions to
promote the problem-solving skills of youth with When teaching problem-solving skills, generally,
intellectual disability that might provide direction instruction focuses first on problem perception—
for additional such efforts. The first is the ESCAPE- the recognition and labeling of problems. As part
DD process described in Chap. 11. Unit 2 of of this step, students should address the follow-
ESCAPE-DD emphasizes problem-solving skills in ing questions: (a) Is the problem caused by
the process of decision making. Like most decision myself or someone else? and (b) How important
making processes, the first step in the ESCAPE-DD is the problem? Students should also learn how to
decision making process is to identify what the estimate the time they will need to solve a
problem is and to identify potential solutions about problem during this step.
which a decision is to be made. The ESCAPE-DD Second, students learn to gather as much
curriculum is focused on enabling people with information about the problem as possible, set
intellectual and developmental disabilities to make problem-solving goals, and re-examine the
decisions and solve problems that enable young importance of the problem’s resolution to their
people to avoid high-risk situations of potential well-being. This will allow them to better
abuse, so the problems students learn to solve understand how to identify effective solutions.
involve real-world situations in which students Third, students learn to generate alternative
might find themselves at greater risk for abuse, solutions to the problem. This step is often
neglect, and exploitation. problematic for students with disabilities. Many
The second intervention incorporating students with intellectual disability tend too
problem-solving instruction that has already been often to focus on and stay with alternatives that
discussed in this book is the Self-Determined are ineffective. To help solve this problem, you
Learning Model of Instruction (see Chap. 5), which might provide more experiences with social
enables teachers to teach students a self-regulated problems; that is, you might expand the experi-
problem-solving process to set and attain goals. ence base from which the student can draw when
One element of the SDLMI involves student generating alternatives; “instruction” may be as
questions, four in each of the three phases, which, simple as expanding a student’s experiences in
when answered by the student (with support from social interactions. You also might provide
the teacher or facilitator) form a problem-solving instructional opportunities that would enable stu-
process consisting of (a) identifying the problem, dents to generate at least one solution for a fre-
(b) identifying potential solutions to the problem, quently encountered social dilemma. After
15 Problem Solving and Self-advocacy 223

generating one solution, they should learn to gen- presented, a potential solution is acted out, and
erate a small list of alternatives, and finally to the outcomes of that solution are discussed.
brainstorm alternatives. Many programs have been Role-playing is intended to be beneficial both for
developed that follow this basic problem-solving students play-acting the problem scenario and for
model introduced by D’Zurilla. The following is students observing.
an example of one such program. Implementing role-playing requires some
Benjamin (1996a, b) developed programs to specific teaching skills. Role-play situations are
get students thinking about problems they generally less structured than other instructional
encounter at school and work. Students are activities, so the teacher must maintain a balance
taught the following four-step process: between too much and too little control. This
involves setting the various steps in motion and
(1) Understand: Students learn, through guiding students through the discussion and
role-playing and simulated activities, to evaluation activities. Questions and comments
observe and analyze the situation, to identify should encourage a free and honest expression of
the problem in the situation, and to name that ideas and feelings, particularly in the discussion
problem. phases. In most circumstances, teachers will want
(2) Plan and Solve: Students are taught to think to identify the problem issues, script the role-play
about possible options that might be a solu- scenario, and generate the questions and options
tion to the problem. If they cannot identify for alternative responses. Students can be
any existing solutions, they are taught how to involved in many of these activities as well.
access resources, such as libraries and talking Modeling. Modeling appropriate
to others, to generate possible solutions. problem-solving skills is also an important
(3) Check: Once a student has identified specific component of instruction. Effective modeling
solutions and selected one, the student is keeps the following issues in mind:
encouraged to see if there is still a problem.
If so, what can he or she do to change the • The modeled behavior or action needs to be
plan? clear to students, and students need to be able
(4) Review: Students explore how they can use to easily distinguish it from other behaviors.
strategies to solve similar problems in other • The person modeling the behavior or action
circumstances. should be someone whom the student will
want to imitate.
As one teaches problem solving, it is impor- • The behavior or action should be modeled in
tant to get students to think about the conse- circumstances that are motivating, interesting,
quences of various alternatives. Teach students to and reinforcing.
determine the risk involved in each option. Stu- • Teachers need to be sure that students can
dents need to understand the relative risk asso- adequately see and hear the modeled
ciated with social interactions, particularly given behavior.
that peer pressure is often a significant factor in • The more complex a behavior or action, the
whether students choose to engage in high-risk more times it will need to be modeled.
behavior such as drug, tobacco, or alcohol use. • Modeling should be followed by opportuni-
Role-Playing. Role-playing is frequently used ties to practice the modeled behavior.
to teach social skills and is equally useful to
teach social problem-solving skills. Role-playing Video and technology-based options can
provides students with practice opportunities to augment and improve both role-playing and
learn to deal with social problems; a problem is modeling instructional activities.
224 M.L. Wehmeyer and K.A. Shogren

Promoting Self-advocacy • How laws are made and how citizens can be
involved;
Promoting General Self-advocacy Skills • What safeguards apply in cases of limitations
of rights;
Students with disabilities need to learn the skills • How rights are protected and by whom;
to advocate on their own behalf. To be an • What someone should do when their legal
effective self-advocate, students have to learn rights are violated (Gould, 1986).
both how to advocate and what to advocate for.
A staple of instruction in self-advocacy is to There have been a number of successful
provide opportunities for young people to learn strategies developed to teach civil and legal
about their rights and related responsibilities. rights to students with disabilities. Sears, Bishop,
Such instruction often includes instruction on and Stevens (1989) implemented strategies to
citizenship skills related to voting, community teach students with intellectual disability their
participation, and so forth. Miranda rights so that they might better advocate
When teaching students how to advocate for for themselves if they encountered the criminal
themselves, the focus should be on teaching justice system. They suggested starting with
students how to be assertive, how to effectively efforts to increase literal comprehension of rights
communicate their perspective (either verbally or (using written materials like textbooks or other
in written or pictorial form), how to negotiate, training materials), and then developing vignettes
how to compromise, and how to deal with sys- and role-playing potential situations in which the
tems and bureaucracies. Students need to be knowledge of civil and legal rights might be
provided real-world opportunities to practice used.
these skills. This can be done by embedding Interactions with the legal system can be
opportunities for self-advocacy within the school problematic for people with intellectual disability
day, by allowing students to set up a class who, through a variety of factors, may be at
schedule, work out their supports with a resource greater risk for negative outcomes in the judicial
room teacher or other support provider, or par- and criminal justice system (Smith, Polloway,
ticipate in IEP and transition meetings (as will be Patton, & Beyer, 2008). After reviewing the lit-
discussed subsequently). erature showing the potential pitfalls of people
Legal Rights and Citizenship Skills. Gould with intellectual disability engaging with the
(1986) suggested that the primary emphasis in criminal justice system, Smith et al. recom-
teaching self-advocacy should be “sensitizing mended that interventions maximally empower
transition-age students to their own needs and the young person to be able to act on their own,
rights and ways of pursuing them” (p. 39). Gould to recognize and solve problems associated with
described the issue of rights as central to the interaction, and to know how to advocate for
self-advocacy and listed two types of rights: himself or herself.
(a) legal or statutory rights that apply to citizens Teaching students about the Constitution of
by virtue of laws or regulations enacted by the United States and the Bill of Rights is one
political representatives and (b) personal or means of increasing student knowledge of civil
human rights that apply to everyone by common and legal rights. This is typically an activity
agreement. Key areas of training in citizenship undertaken in secondary social studies, govern-
rights include: ment, or political science classes. In many cases,
students with disabilities have few, if any,
• Defining legal and citizenship rights for all opportunities to learn about these issues, either
citizens; because they are not included in classes where
• Important legal or civil rights for individuals the topics are covered or because it is not con-
with disabilities; sidered important to the student’s educational
• Responsibilities associated with citizenship; program. However, there have been strategies
15 Problem Solving and Self-advocacy 225

developed to teach these topics to youth with way of educational meetings and program
disabilities. For example, Howard (1988, 1991) delivery, what the law says about transition ser-
developed two sets of material that enable sec- vices and requires in terms of student involve-
ondary teachers to teach students with disabili- ment, and what procedural guidelines are in place
ties, particularly students with intellectual to ensure compliance. Similar instructional
disability, about the Constitution and Bill of efforts could target Section 504 of the Rehabili-
Rights. The first set, We the People, is a teaching tation Act or the Americans with Disabilities Act.
unit on the Constitution for high school students Leadership and Teamwork Skills. Abery,
with disabilities. Materials in this set include a Smith, Sharpe and Chelberg (1995) suggested
student-directed workbook, audio and video- that most people, with or without a disability, do
tapes, and student booklets on the Constitution not view themselves as leaders, in part because of
and voting. The second set of materials, the Bill the images of “leader” in our society. Leaders,
of Rights Series, incorporates multimedia ele- contend Abery and colleagues, are “viewed as
ments to further students’ understanding of the charismatic individuals who inspire others to
Bill of Rights, including cartoon-style booklets action through fiery speeches. Leaders are
on the First Amendment, Arrest and Trial and thought of as unusually attractive, intelligent,
Voting Amendments, and a card and board powerful, talented and/or prosperous. Still others
game. These materials stress a cooperative think of leaders as martyrs who sacrifice all for a
learning strategy, in which students work toge- cause” (Abery et al., 1995, p. 1).
ther in groups of from 2 to 5 members. Howard Too often in our society, disability and
(1991) makes a number of suggestions to aug- leadership are often viewed as being mutually
ment instruction on civil rights: exclusive. Consequently, there have been only
a limited number of efforts to promote leader-
• Visit the city council or county board of ship for students with disabilities (outside the
supervisors [or commissioners]. context of the IEP meeting, that is). Given that
• Visit a voter registration office and practice the role of leader is the one that is valued by
filling out forms in class. most adults in our society, this omission serves
• Take a tour of the state capitol building or to further marginalize adults with disabilities.
legislative offices. Ask a legislator to speak to However, stereotypes to the contrary, most
students if possible. people probably have the capacity to become a
• Watch C-SPAN when programming takes leader, if one examines more closely what it
place in the Congress. means to lead. Leaders are people who guide
• Write to the League of Women Voters for or direct others on a course of action, influence
information about local elections. the opinion and behavior of other people, and
• Analyze newspaper articles and editorials for show the way by going in advance. Leadership
opposing views. can take many forms, and many leaders do not
• Hold a mock trial. fit the stereotypes described earlier. As such,
the types of skills that leaders need to possess
A third area of focus is to teach students about are varied and, in some cases, redundant to
their rights and responsibilities under specific skills discussed in the chapter on assertive
laws or regulations that particularly impact their behavior. There are a number of skills associ-
lives. The Individuals with Disabilities Education ated with leadership training, in general, which
Act (IDEA) is one such law and will be pertinent include:
to all students receiving special education ser-
vices. Students can learn what the Act was • Locate and use resources that will be of
written to achieve, what the Act requires in the benefit to the individual or group;
226 M.L. Wehmeyer and K.A. Shogren

• Communicate effectively with the group and Promoting Self-advocacy Through

the public; Student Involvement
• Help the group to describe and communicate
a common goal, objective, or vision; The IEP and transition planning meetings are
• Understand group and individual needs; ideal circumstances in which students can learn
• Are goal oriented, organized, and have and practice self-advocacy skills. Two student
strategic planning skills; involvement processes have causal evidence of
• Set an example for others; their impact. The Self-Directed IEP (SDIEP;
• Teach and mentor others; Martin & Marshall, 1995) and Whose Future is it
• Facilitate teamwork and cooperation; Anyway? (Wehmeyer et al., 2004), both men-
• Provide feedback and evaluation; tioned previously, have causal evidence of their
• Resolve conflicts and solve problems; impact on student self-determination and student
• Direct group activities and equitably dis- involvement.
tribute resources and responsibilities. The Self-Directed IEP (SDIEP; Martin &
Marshall, 1995) is a process to teach students to
Leadership, by definition, is contextual. That direct their own IEP meeting. The SDIEP is part
is, a leader guides or directs others in defined of a larger intervention, the ChoiceMaker series,
settings or circumstances. The most common focusing on teaching students goal-setting and
opportunities to experience leadership roles are self-advocacy skills. Using the SDIEP, students
in group settings, such as at meetings and in learn 11 steps for leading their own transition
clubs, volunteer organizations, religious or planning meeting, including stating the purpose
charitable organizations, and other groups or of the meeting, introducing attendees, reviewing
entities. Within an organization or group, the past goals and progress, stating new transition
types of leadership roles can vary considerably. goals, summarizing goals, and closing the
For example, taking the lead to ensure that a meeting by thanking attendees. Martin et al.
mailing gets out to the members of a volunteer (2006) provided causal evidence of increased
organization requires different skills and actions involvement in the IEP process by students who
than chairing a governmental committee or vol- had participated in the process. They found that
unteer board of directors. students who went through the SDIEP process
While skill development is an important part significantly increased the percentage of time
of learning to be a leader, it is also important that they talked during meetings and were able to
students have opportunities to learn to lead by start and lead meetings. Seong, Wehmeyer, Pal-
leading. The educational planning process is an mer, & Little (2015) conducted a
ideal venue in which to teach leadership skills randomized-trial control group study of the
and to provide opportunities for students to impact of the SDIEP on the self-determination
assume some leadership responsibilities, as dis- and transition empowerment of youth with dis-
cussed below. In addition, there are a number of abilities. This study found that instruction using
school and community-based extracurricular the SDIEP resulted in significant differences
activities, such as clubs or sports, in which stu- between control and treatment group students on
dents can assume leadership roles. Over the past self-determination and transition knowledge. In
two decades, a system of self-advocacy organi- both cases, students who received instruction had
zations—chapters and organizations run by more positive outcomes.
people with intellectual and developmental dis- Whose Future is it Anyway? (WFA; Weh-
abilities with the focus of advocating for one’s meyer et al., 2004) is a student self-regulated
own and other’s needs—has emerged and process to promote more meaningful involve-
teachers can link adolescents and young people ment in transition planning. Developed for stu-
with these entities (go to http://www.sabeusa.org/ dents with intellectual and developmental
for more information). disabilities, the WFA process consists of 36
15 Problem Solving and Self-advocacy 227

sessions enabling students to self-direct instruc- disability, including goal setting and
tion related to (1) self- and disability-awareness; self-regulation, covered in the next chapter.
(2) making decisions about transition-related
outcomes; (3) identifying and securing commu-
nity resources to support transition services; References
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Author Biographies
Michael L. Wehmeyer Ph.D., is the Ross and Mariana Karrie A. Shogren Ph.D., is a Professor of Special Educa-
Beach Distinguished Professor of Special Education and tion, Senior Scientist at the Life Span Institute, and Director
Senior Scientist and Director, Beach Center on Disability, at of the Kansas University Center on Developmental Disabili-
the University of Kansas. Dr. Wehmeyer’s research focuses ties at the University of Kansas. Dr. Shogren has published
on self-determination, understanding and conceptualizing extensively in the intellectual and developmental disabilities
disability, the application of positive psychology to disability, field, and her research focuses on assessment and intervention
conceptualizing and measuring supports and support needs, in self-determination and positive psychology, and the
and applied cognitive technologies. He is the co-editor of application of the supports model across the lifespan. She is
American Association on Intellectual and Developmental co-Editor of Remedial and Special Education and Inclusion.
Disabilities ejournal, Inclusion.
 Goal Setting and Attainment
and Self-regulation 16
Michael L. Wehmeyer and Karrie A. Shogren

positions self-determination with constructs that

Introduction
are important in understanding human agency,
where action is considered not only
Chapter 5 discussed issues pertaining to
goal-directed, but self-regulated. Human agentic
self-determination and Causal Agency Theory as
theories assume that actions are volitional and
they have impacted practice in the field of
that an agentic person uses self-regulated and
intellectual and developmental disabilities. Pro-
goal-directed agentic actions to “plot and navi-
moting self-determination is at the heart of the
gate a chosen course through the uncertainties
person–environment fit models of disability dis-
and challenges of the social and ecological
cussed in Chap. 2 and the Supports Paradigm
environments … continuously interpreting and
discussed in Chap. 3. Goal setting and attainment
evaluating actions and their consequences” (Lit-
skills are central to enabling people to act in a
tle, Hawley, Henrich, & Marsland, 2002, p. 390).
self-determined manner. Causal Agency Theory
In this chapter, we provide a more in-depth
defines self-determination as:
look at self-regulation and goal-directed action
…dispositional characteristic manifested as acting using Causal Agency Theory as a framework, and
as the causal agent in one’s life. Self-determined
people (i.e., causal agents) act in service to freely
then examine what is known about promoting
chosen goals. Self-determined actions function to goal setting and attainment activities for people
enable a person to be the causal agent in his or her with intellectual and developmental disabilities.
life (Shogren et al., 2015, p. 258).

Self-determined action is volitional action in

service of a goal. Self-determined action is, Conceptualizing Goal Setting
fundamentally, goal-oriented and goal-driven and Attainment and Self-regulation
action. Similarly, “the setting of goals and their
translation into action is a volitional process” Goal Setting and Attainment
(Latham & Locke, 1991, p. 23). Self-determined
action, therefore, can also be understood as Self-determined actions are purposeful; that is,
self-regulated action. Causal Agency Theory people use self-determined actions to achieve an
end or, more accurately, attain a goal. Thus,
goal-directed behavior enables people to act as
causal agents in their lives and, over time, such
M.L. Wehmeyer (&)
K.A. Shogren action leads to enhanced causal agency and
University of Kansas, 1200 Sunnyside Ave., Rm
3136, Lawrence, KS 66045, USA self-determination. Goal setting and attainment
e-mail: [email protected] skills, as such, are critical to agentic action and
K.A. Shogren the development of self-determination. At the
e-mail: [email protected] broadest level, goals are “mental representations

© Springer International Publishing AG 2017 231

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_16
232 M.L. Wehmeyer and K.A. Shogren

of desired outcomes to which people are com- specifically that when goals reflect the prefer-
mitted” (Mann, de Ridder, & Fujita, 2013, ences and interests of the person, motivation to
p. 488). Goals specify what a person wishes to take actions to pursue the goal is enhanced
achieve and act as regulators of human behavior, (Hortop, Wrosch, & Gagné, 2013). Generally,
creating a sense of urgency and motivating the goals that have personal meaning, or come to
person to act (Mann et al., 2013). If a person sets have personal meaning, are more likely to be
a goal, it increases the probability that he or she attained (Locke & Latham, 2002, 2006).
will perform actions related to that goal or As people pursue goals, a number of factors
desired outcome (Locke & Latham, 2006). As impact the process of goal setting and attainment,
discussed in detail subsequently, setting a goal including (a) the capability to perform causal
creates a tension between a person’s current state actions, which can subdivided into causal
and a desired state, or goal state (Mithaug, 1996). capacity and agentic capacity, and (b) threats to
Goal setting is a process used to determine and opportunities for goal-directed action that
one’s goals and what constitutes successful emerge in the environment and promote causal
achievement of those goals (Mann et al., 2013), action. Figure 16.1 provides a graphic to illus-
while goal attainment is the successful achieve- trate the goal-generation sequence envisioned by
ment of the goal that was set. The process of goal Causal Agency Theory to illustrate the process
setting and attainment involves: (1) identifying by which goal setting and attainment occurs.
and defining a goal clearly and concretely, As discussed in Chap. 5, two essential char-
(2) identifying pathways to achieve the goal, and acteristics of self-determined action include
(3) specifying and implementing the pathways volitional actions and agentic actions. Volitional
most likely to achieve the desired outcome. At actions refer to actions based upon conscious
each step, choices and decisions must be made choice that reflect one’s preferences. Volitional
about what goals to pursue and what actions will actions involve the initiation and activation of
lead to goal attainment. causal capabilities—the capacity to cause some-
There are many types of goals. For the pur- thing to happen in one’s life—and involve initi-
poses of this chapter, we focus on what are ating goals. Referring to Fig. 16.1, then, the goal
referred to as approach goals, which are intended action process begins with a goal-generation
to secure a wanted or desired outcome (Elliott & process that uses causal capabilities. Causal
Dweck, 1988). Approach goals can either be capability includes the knowledge, skills,
performance (achievement of a specified stan- self-perceptions, and beliefs about one’s envi-
dard) or mastery (improvement or development ronment that enable the expression of causal
of a skill) focused (Elliott & Dweck, 1988). action. Having the capacity to engage in goal
Traditionally, research has suggested that the pursuit enables a person to prioritize goals,
most effective goals are those that are challeng- identify what is in line with personal preferences
ing, but not so challenging that they are and interests, and initiate actions that enable one
unattainable (Locke & Latham, 2013). If goals to choose and pursue a goal.
are too easy, a person is not motivated to engage The goal action schema depicted in Fig. 16.1
in actions necessary to attain them, nor is there a culminates with the employment of agentic
feeling of accomplishment after achieving them. capabilities. Agentic actions, according to Causal
There seems to be more benefit to goals that are a Agency Theory, are self-directed actions that
just-right fit (Mithaug, 1996), that is, challenging enable people to sustain action toward achieving
but not unattainable. However, recent evidence a goal. As discussed in Chap. 15, when acting
has suggested that even unattainable goals can agentically, self-determined people use pathways
have a positive impact with regard to motivation thinking, which identifies various ways to get to
to act (Mann et al., 2013) if they motivate a a specific end or cause or create change. The
person to strive for an outcome. This may be identification of pathways, or pathways thinking,
related to another finding with regard to goals, is a proactive, purposive process. Agentic actions
16 Goal Setting and Attainment and Self-regulation 233

CAUSAL CAPABILITY

Self-
Goal Generation
Analysis
Process

Goal
Prioritization
Explication

Goal Discrepancy Goal Discrepancy

Analysis Problem

Capacity-Challenge Discrepancy Analysis

Capacity Challenge
Analysis Analysis

Capacity Challenge
Adjustment Adjustment

Just-RIght Match

Discrepancy Reduction Plan

Causal Choices/
Expectations Decisions

No
Implement Discrepancy
Reducation Plan

Self-Monitoring AGENTIC CAPABILITY

No
Goal Discrepancy
Analysis

Yes

Desired Change or
Maintenance

Fig. 16.1 Overview of goal action schema

are self-regulated and self-directed and enable one’s current state with one’s anticipated goal
progress toward freely chosen goals. Agentic state, self-regulating, and evaluating whether the
capabilities (skills to sustain agentic action) chosen pathway is leading to progress toward the
include the skills and knowledge associated with outcome.
self-management, goal attainment, problem- Both causal and agentic capabilities work
solving, and self-advocacy. A critical element together in complex ways to achieve or maintain
of agentic capability is the act of comparing a desired goal. When opportunities or challenges
234 M.L. Wehmeyer and K.A. Shogren

emerge in the environment, a person begins a component, or returns to the goal-generation

goal-generation process, consisting of process to re-examine the overall goal, its prior-
self-analysis and exploration concerning one’s ity, and, possibly, cycling through the process
strengths, limitations, preferences, values, and with a revised or new goal. All of these actions
wants with regard to the environmental circum- require self-regulation of one’s goal-directed
stances. After prioritizing actions, the goal state behavior.
is defined in terms of the most important action.
Knowledge of oneself and one’s vision for the
future is central to this prioritization process and Self-regulation
the definition of the goal state. With a goal state
in mind, the person then engages in a goal-dis- Simply put, self-regulation is “the most widely
crepancy analysis wherein the current status and used term referring to various processes involved
the goal status are reconciled and pathways and in attaining and maintaining regular goals” (Day
action steps are identified and prioritized. This is & Unsworth, 2013, p. 158). At its broadest level,
the goal-discrepancy problem; essentially the self-regulation refers to “bidirectional causal
person needs to identify the pathways they need interactions between individuals and their con-
to take to reduce the discrepancy and achieve texts” (Geldhof, Fenn, & Finders, 2017). Within
their goal by conducting a capacity-challenge Self-determination Theory, self-regulation is
discrepancy analysis. The person evaluates his or conceptualized as an organizational function that
her capacity to solve the problem and examines “coordinates” systemic behaviors and serves as a
the degree to which the challenge will support foundation for autonomy and the sense of self
goal attainment. In this process, the person (Ryan & Deci, 2004). Within Causal Agency
maximizes adjustment in capacity (e.g., acquires Theory, self-regulation has been broadly defined
new or refines existing action skills) or adjusts as “cognitive or self-controlled mediation of
the challenge presented to create a “just-right one’s behavior” (Shogren et al., 2015, p. 252).
match” between capacity and challenge so as to Self-regulation involves the coordinated
optimize his or her probability of solving the mediation of one’s interactions with one’s con-
goal-discrepancy problem (Mithaug, 1996; text. This is, fundamentally, a goal-oriented
Wehmeyer, Abery, Mithaug, & Stancliffe, 2003). process. Day and Unsworth (2013), for exam-
Next, a person creates a discrepancy-reduc- ple, identified four “key processes” in
tion plan that is regulated by the third essential self-regulation: “(a) goal establishment (adopt-
characteristic of Causal Agency Theory, the ing, adapting, or rejecting a goal), (b) planning
person’s action-control beliefs. As discussed in (processes involved in preparing to pursue a
Chap. 5, such beliefs influence the expectations goal), (c) striving (moving toward or maintaining
and choices a person makes in service of their a goal), and (d) revision (processes involved in
goal. The person then monitors their progress to changes or disengagement from a goal” (p. 159).
reduce the discrepancy between their current The Self-determined Learning Model of
status and goal status, determining whether their Instruction, described in Chap. 5, is described as
actions led to goal attainment, or they encoun- self-regulated problem-solving to enable students
tered barriers and must re-evaluate their goal or to self-direct learning, and uses processes virtu-
the action plan. If the goal is achieved, an agentic ally identical to those described by Day and
person will return to the goal-generation process, Unsworth.
identifying the next goal in the sequence. If the Mithaug (1993) described four “regulatory
progress is satisfactory but the goal is not yet functions” in self-regulation theory: “(1) the
achieved, the person will continue implementing identification of gain that will reduce a discrep-
the discrepancy-reduction plan. If progress is not ancy (expectation proposition), (2) the selection
satisfactory, the person either reconsiders the of behaviors or operations that will produce that
discrepancy-reduction plan and modifies that gain (choice proposition), (3) the distribution of
16 Goal Setting and Attainment and Self-regulation 235

responses between producing gain and gathering of goal setting on rate and accuracy of sorting
information (response proposition), (4) the gain and assembly tasks; these were mainly older
toward total attainment produced by interactions studies focused on improving the performance
between past gains, expectations, choices, and of people with intellectual disability on tasks
responses (gain proposition)” (p. 127). Returning common in sheltered employment. However,
to Fig. 16.1, one can see elements of both the this does not mean that goal setting instruction
key processes of self-regulation proposed by Day and supports are not effective in integrated
and Unsworth (2013) and the regulatory func- employment settings; it simply reflects that most
tions proposed by Mithaug (1993) in the research was being conducted in segregated
goal-generation, goal-discrepancy analysis, settings at this time. In terms of children and
capacity-challenge discrepancy analysis, and youth with intellectual and developmental dis-
discrepancy-reduction plan processes. abilities and goal setting and attainment, only
two studies examined the impact of goals on
academic tasks for this population. Gardner and
Goal Setting, Self-regulation, Gardner (1978) incorporated goal setting as an
and People with Intellectual instructional strategy to improve performance
and Developmental Disabilities on spelling and vocabulary tests, and found that
students who were provided direct instruction
The literature that addresses goal setting and on goal setting scored significantly higher on
people with intellectual and developmental dis- both spelling and vocabulary post-tests. Warner
abilities is limited. The literature pertaining to and DeJung (1971) examined goal and no-goal
self-regulation is, however, more extensive. groups’ performance on spelling tasks and
Researchers have examined multicomponent found that the goal setting group performed
strategies and interventions that support the significantly better on a spelling post-test,
development or use of various types of although there were no effects of hard versus
self-regulation or self-management strategies, easy goals.
such as self-monitoring and self-evaluation. In So, what has been found since the Copeland
the following sections, we will examine what and Hughes review in 2002? In some ways, quite
known about strategies to support goal setting a bit, if one considers the literature examining the
and attainment and self-regulation of people with impact of multicomponent interventions that
intellectual and developmental disabilities. incorporate goal setting as part of self-
management or self-regulation interventions.
On the other hand, studies specifically examining
Goal Setting and Attainment goal setting, as a stand-alone intervention, by
people with intellectual and developmental dis-
Copeland and Hughes (2002) reviewed empiri- abilities are still rare. In fact, to our knowledge,
cal investigations of the effects of goal setting only one such study has been published in the
on task performance of persons with intellectual past decade. McConkey and Collins (2010)
disability and identified 17 articles that used conducted a study in which adults with intellec-
either group experimental designs or tual disability were supported to set social
single-subject designs studies. In 15 of these 17 inclusion goals they wanted to achieve in a
research reports, there was evidence of increases 9-month period. After the first 9-month period,
or improvements in task performance following 57% of the 130 participants with intellectual
instruction in goal setting skills (Copeland & disability had attained one of the goals they had
Hughes, 2002). However, Copeland and Hughes set. Importantly, people who lived in smaller
found that the outcomes targeted by goal setting community-based settings were significantly
were rather limited: 65% looked at the impact more likely to have attained goals.
236 M.L. Wehmeyer and K.A. Shogren

Self-regulation desired goal or outcome and to administer con-

sequences to themselves (e.g., verbally telling
As noted, the scarcity of studies examining the themselves they did a good job). Self-
impact of goal setting, itself, on outcomes that reinforcement allows people to provide them-
impact the lives of people with intellectual and selves with reinforcers that are accessible and
developmental disabilities is, to some degree, immediate. Given access to self-administered
mediated by the proliferation of research incor- reinforcement, behavior change may be greatly
porating multicomponent interventions to pro- facilitated and the combined use of self-
mote self-regulation and self-determination that evaluation and self-reinforcement has been
incorporate goal setting as one element of the shown to improve generalization of learning
instruction or support provided. We begin this (Agran, King-Sears, Wehmeyer, & Copeland,
section with a broad overview of the impact of 2003).
stand-alone self-regulation strategies, particularly Multicomponent strategies. Most interven-
self-monitoring and self-evaluation, with people tions that incorporate self-regulation strategies do
with intellectual and developmental disabilities. not implement them individually, but as part of a
Self-regulation strategies. The most com- multicomponent package containing multiple
monly implemented self-regulation strategies self-regulation strategies and goal setting
involve self-instruction, self-monitoring, and instruction and supports. Cobb, Lehmann,
self-evaluation and self-reinforcement. Self-in- Newman-Gonchar, and Alwell (2009) conducted
struction involves teaching students to provide a narrative metasynthesis of interventions to
their own verbal cues prior to the execution of promote self-determination. A metasynthesis is a
target behaviors. Students and adults with intel- review of existing meta-analytic and systematic
lectual disability have been taught to use reviews on a topic. The Cobb et al. metasynthesis
self-instruction to solve a variety of work prob- concluded that the most effect interventions to
lems, including to complete multistep sequences promote self-determination were interventions
and generalize responding across changing work that had multiple components. This confirms the
environments (Wehmeyer et al., 2007). power of combining elements such as self-
Self-monitoring involves teaching students to monitoring, self-instruction, and goal setting
observe whether they have performed a targeted into a multicomponent intervention. The Self-
behavior and whether the response met whatever Determined Learning Model of Instruction, dis-
existing criteria were present. Teaching students cussed in Chap. 5 and in some more detail sub-
self-monitoring strategies has been shown to sequently, is itself a multicomponent
improve critical learning skills and classroom intervention, incorporating goal setting, self-
involvement skills of students with intellectual monitoring, self-evaluation, problem-solving,
disability (Agran et al., 2005; Hughes et al., and several other components. In another exam-
2002) as well as to promote access to the general ple of multicomponent intervention used to
education curriculum for students with intellec- support people with intellectual disability,
tual disability (Agran, Wehmeyer, Cavin, & Copeland, Hughes, Agran, Wehmeyer, and
Palmer, 2008, 2010; Wehmeyer, Hughes, Agran, Fowler (2002) implemented an intervention to
Garner, & Yeager, 2003). In adults, Woods and support improved classroom performance by
Martin (2004) found that teaching supported high school students with intellectual disability
employees to self-manage and self-regulate work in general education settings. The intervention
tasks improved work performance and employ- included (a) modification of teacher-assigned
ers’ perceptions of the employee. worksheets, (b) instruction for students in
Self-evaluation and self-reinforcement involve assignment completion strategies, (c) instruction
teaching people to compare their performance for students in self-monitoring of classroom
(as tracked through self-monitoring) with a performance skills, (d) including students in
16 Goal Setting and Attainment and Self-regulation 237

setting performance goals, and (e) instruction for identified 15 studies published in peer-reviewed
students in goal progress self-evaluation. Students journals between 2002 and 2012 with a total of
receiving the intervention learned to participate in 50 participants. Eleven of the participants were
goal setting, learned to self-monitor and elementary-school age students, 25 were middle
self-evaluate their progress toward their goals, and high school students, and 14 were 18–
and showed improved classroom performance. 21 years of age. Twenty-nine (58%) were stu-
Self-determined Learning Model of Instruc- dents with intellectual disability. The overall
tion. Because research has established the Percent Non-Overlapping Data (PND) across all
importance of promoting the self-determination participants was 79.8% (scores between 70 and
of students with disabilities, most of the multi- 90% are considered effective treatments). So, the
component interventions that involve goal setting SDLMI is an example of a multicomponent
and self-regulation strategies have been imple- intervention that incorporates goal setting and
mented in service of promoting self- self-regulation strategies that has been shown to
determination and improving student and be effective across multiple educational and
school outcomes. And, the majority of that transition domains, across age-groups, and across
research has involved the Self-determined disability categories, but particularly for adoles-
Learning Model of Instruction (SDLMI), dis- cents with intellectual and developmental
cussed in Chap. 5. We will not reiterate the disabilities.
SDLMI process in this chapter (readers are In summary, then, it is evident that people
referred to Chap. 5), but will simply note that the with intellectual and developmental disabilities
SDLMI is a model of teaching that enables can participate in the goal setting process and in
teachers to teach students to self-regulate doing so can lead to multiple positive outcomes
problem-solving leading to goal setting and related to learning and functional (e.g., employ-
attainment. Students are at the center of this goal ment, community living) outcomes. There is,
setting process and use a series of questions to however, a need for research to examine in
enable them to solve problems (What is my greater detail what aspects of goals contribute to
Goal? What is my Plan? What have I learned?) greater goal attainment for this population.
that enable them to set goals, monitor their pro-
gress toward the goal, and adjust the action plan
or goal as needed to be able to attain the goal. Promoting Goal Setting, Goal
As discussed in Chap. 5, there are many Attainment, and Self-regulation
studies at various levels of evidence supporting
the efficacy of the SDLMI. There are multiple Teaching anyone, including people with intel-
studies using randomized control trial designs lectual and developmental disabilities, to set
providing causal evidence with regard to the goals involves instruction on the series of steps
efficacy of the SDLMI to promote self- that move a person from goal identification to
determination (Lee, Wehmeyer, Soukup, & Pal- goal articulation. There are obviously many
mer, 2010; Wehmeyer et al., 2012) and more domains that instruction on goal setting can
positive school-related outcomes, including occur within, but to illustrate the process of
educational goal attainment (Shogren, Palmer, teaching goal setting skills, we will focus on
Wehmeyer, Williams-Diehm, & Little, 2012). In learning goals, given the importance of teaching
addition, there are more than a dozen single-case these skills to children and adolescents. How-
design studies that have examined the efficacy of ever, any of these strategies can also be applied
the SDLMI. Lee, Wehmeyer, and Shogren across the life span by anyone who is supporting
(2015) conducted a meta-analysis of single-case people with intellectual and developmental
design studies evaluating the SDLMI. They disabilities.
238 M.L. Wehmeyer and K.A. Shogren

Teaching Goal Setting Skills specific skills such as assertiveness,

problem-solving, self-management, commu-
Step 1: Identify the goal. The first step in setting nication, and decision making in order to
a goal is to identify the goal or target. This starts proceed with the goal setting process.
by having students think about what they want or 3. Risk taking—Fear of taking risks may inter-
need to learn. This may be as straightforward as fere with goal setting. Teachers may need to
the person identifying the performance standards help students overcome their fear of risk
associated with a given content area, or students taking through strategies such as role-play.
may need to consider their present knowledge 4. Lack of social supports—Students with dis-
about or mastery of content information or skills abilities too often have few supportive rela-
to identify what the next step in the learning tionships. Helping them develop support
process would be. networks may facilitate goal attainment.
Step 2: Write the goal. Having the student
write (or dictate to be written) a goal serves a Is there a time established for the accom-
number of purposes, including making it more plishment of the goal? Goals only regulate
real to the student, ensuring that the goal will not behavior when they cause us to act, and setting
be forgotten, and providing a starting point for specific deadlines by which to achieve a goal, or
refining the goal. To begin with, have the student steps in the goal process, is one way to regulate
simply write what it is that he or she sees as the our action. Shorter-duration goals are more likely
goal. Once that is done, work with the student to to be linked to positive performance. Given that
expand or revise the goal to ensure the following students with intellectual disability may have
characteristics or features: difficulty conceptualizing “time” and may not
Is the goal so clear and specific that students understand the time frame within which
know immediately whether or not they have met longer-term goals should be achieved, a focus on
it? Doll and Sands (2005) noted that students shorter-duration goals can be affective, particu-
may have a tendency to express goals in vague or larly when teaching goal setting skills.
broad terms. As a starting point, then, students In some cases, it may also be most effective to
need to refine their goal to be sure that the have the goal delineate a starting date as well as a
behaviors and outcomes are clear and stated completion date. A start time, date, or event
precisely. For performance goals, the outcome provides impetus to begin working toward a
must be clearly and specifically described. For goal. The start date should be within the near
process goals, the actions or processes to be future. If it is in the too distant future, the goal
implemented must, likewise, be clear and spe- may be forgotten or it may no longer be an
cific. Goal specificity can be linked to goal appropriate goal when the time comes to start
measurability, as discussed subsequently. working on it. Starting and completion dates are
Kish (1991) noted a number of potential bar- also helpful in estimating the total time for goal
riers to setting clear and specific goals: completion.
Is the goal measurable? Clarity and speci-
1. Lack of knowledge and information—Some ficity are important so that students know when
adolescents cannot set goals because they they have achieved a goal. This, in turn, leads to
lack information or knowledge. Providing the importance of ensuring that such progress is
necessary information is an important step in measurable. Goals should be defined in terms of
the goal setting process because it may help observable or measurable outcomes. Encourage
students develop a new perspective on their the use of specific measures (e.g., frequency or
problems. percent correct, hours of effort) so that it will be
2. Lack of skills—A lack of skills may prevent easy to determine when the goal was met.
students from setting and attaining goals. Can the goal be broken into component steps
Teachers may need to help students develop or objectives? Objectives are the actions or steps
16 Goal Setting and Attainment and Self-regulation 239

needed to achieve a goal. Objectives can be used A student should consider some of the following
as a measure of progress and to provide mile- issues when creating an action plan:
stones for reaching a goal. In fact, the process of What strategies or actions will be needed to
laying out objectives may also be helpful in achieve the goal? Teachers should support stu-
evaluating the appropriateness of a goal. If there dents to identify instructional and other strategies
are too many objectives, maybe the goal is too or actions that will help them close the gap
complex and needs to be broken into several between their current performance or mastery
smaller goals. A well-defined goal will have clear and their goal performance level. Sometimes,
objectives that are easily measurable. those actions involve student acquisition of new
Is the goal written to be positive and future knowledge and skills, and in many cases, stu-
oriented? Goals should be written in a positive dents do not know all the strategies they can use.
manner. The goal should project something that As such, teachers can provide that information.
is increased, gained, or added rather than some- What resources will be needed to implement
thing that is restricted, taken away, or reduced. the action plan? Resources can be broadly
The goal should result in something good, such understood to include needed materials, trans-
as better health, greater professional expertise, or portation, and adult or peer assistance. The action
a more organized office. plan should include specific information on the
Is the goal attainable? This may sound like it resources that will be needed and how those
is redundant to previous considerations, but in resources will be obtained.
fact it is worth considering on its own merit. What schedule will be needed to implement
Certainly, aspects such as completion time and the strategies or actions? Students need to
goal measurability will come into play with determine how often and when they are going to
regard to goal attainment, but there are other work on the activities leading to the goal.
factors that impact this outcome as well. For Teaching students self-scheduling procedures
example, is the goal something that the student can be valuable in this context.
actually has control over and can modify, What process will be used to measure time
change, or otherwise ensure progress? Another spent implementing the action plan? Students
factor might be that the goal is too advanced. will need to track how often they work on their
Again, research shows that harder (though still action plan so that when they evaluate their
attainable) goals lead to greater effort, persis- progress toward the goal, they can decide whe-
tence, and thus enhanced performance when ther the commitment to the action plan has been
compared to easy goals, but the “tough but still sufficient.
attainable” caveat to that rule is important. Goals What self-monitoring strategy will be imple-
that are too hard or too far away from attainment mented to monitor progress? Every action plan
decrease motivation and persistence. should include a specific self-monitoring strategy
that will enable students to collect data with
regard to their goal attainment progress. It will be
Teaching Goal Attainment important to establish baseline levels of perfor-
mance using these self-monitoring strategies,
Once the student has set a goal that takes into with which students can compare future
account the above-noted conditions, they must performance.
then focus on attaining that goal. This involves What other sources of feedback can provide
several more steps. information about progress? In addition to the
Step 3: Create an action plan. An action data generated through the self-monitoring pro-
plan describes the strategies students will cedure, there may be other sources of data or
implement to achieve the goal they have set and feedback that students can tap into and which
establishes how they will monitor that progress. will make their self-evaluation more effective.
240 M.L. Wehmeyer and K.A. Shogren

What schedule will be needed to track pro- Teaching Self-regulation Skills

gress toward the goal? Just as student engage-
ment in activities specified in the action plan Students with intellectual disability can learn to
should be scheduled, so too intervals at which self-instruct, self-monitor, and self-evaluate, and
data will be collected should be scheduled. In if they do so, they benefit and can apply these
general, more frequent data collection is prefer- skills in the process of setting and going after
able. Teachers can work with students to teach goals. The following sections will review effec-
them how to record the data they are gathering in tive strategies to teach self-regulation skills.
ways that will assist in evaluating their progress. Teaching self-instruction skills. Hughes and
Step 4: Evaluate progress and adjust plan Carter (2000) provided a training sequence for
or Goal. In evaluating their progress toward their teaching students to self-instruct.
goal, students should be taught to use data col- Step 1: Provide rationale. The first step in the
lected through the self-monitoring process and process is to provide a rationale to the student on
through other means of obtaining information to the value of self-instruction. The reasons for this
determine the following issues: are obvious: By informing the student about the
Is my progress adequate? All of the intervention, it allows them to have a better
self-evaluation processes involve comparing understanding about what will be done and why.
current status versus goal status. Students should This is, of course, particularly important for an
use data collected to determine whether they intervention that is student-directed, since the
have reached their goal. If not, they need to effectiveness of the intervention will be contin-
determine whether they have made progress from gent on the student’s commitment to its use. As
their baseline level. If progress has been made, such, the teacher must make effort to inform the
students should determine whether the progress student about the appropriateness of the strategy
is adequate given the timeline set in the original for the particular target behavior selected. Ide-
goal. If so, the action the student will take will be ally, a situation can be created in which the
to continue implementation of the action plan. student is provided the opportunity to select both
If the student determines that they are making the target behavior and the self-directed strategy,
progress, but are not on course to meet the since this will enhance the student’s ownership to
deadlines established in the goal, they should the desired change and the intervention. Needless
reconsider the frequency, duration, or intensity in to say, target behavior selection should be based
which they are involved with or engaged in the on the student’s wishes, preferences, and
action or strategies set in the goal. self-determined needs, with input from parents,
If the student determines that they have not teachers, and related personnel or peers. Based
made any progress toward the goal or if they have on this selection, specified student-directed
readjusted their action plan several times and still strategies (e.g., self-instruction, self-monitoring)
does not seem to be on track to complete the goal in are suggested, based on demonstrated effective-
a timely manner, then they will need to revisit the ness, ease of use, and, of course, the student’s
goal and adjust it accordingly. It may be that the preferences.
goal was too broad or was addressing an outcome Regarding self-instruction, one point should
that was too hard or too distant. In most cases, be emphasized. As mentioned previously,
students will want to look at the objectives they self-instruction involves self-talk. Consequently,
developed and determine whether one of those students aware of negative social consequences
might be a better goal, serving as an intermediary of talking aloud may be reluctant to select this
step between current status and the longer-term strategy or consistently use it. If this is a current
goal. Optionally, students may just want to revise or potential problem for the student, it is prudent
the timeline set. Whatever the action, the key is to discourage its use. However, if the student has
that the student uses the information from the a concern about the strategy’s social acceptance
evaluation to adjust their plan or goal. but is willing to use it, the teacher may want to
16 Goal Setting and Attainment and Self-regulation 241

recommend to the student to self-instruct quietly changed. What is most helpful for students,
or in a whisper so as not to get negative attention, however, is to put more specific names on those
or explore other strategies such as writing the non-examples; that is, being off-task looks like a
self-instructions down or using technology. student staring into space, or playing with the
Step 2: Teacher models self-instruction. This calculator instead of using it to do calculations,
step involves the target behavior and the related or talking with others about topics other than
self-instructions. For this step, the teacher models what is being taught or practiced. The focus for
the behavior and the self-instructions and the Step 1 is to ensure the student is familiar with the
student observes. name of the desired behavior, what it looks like,
Step 3: Student performs and teacher and what it does not look like.
instructs. As in Step 2, this step involves task Step 2: Discuss the benefits of the desired
completion and self-instruction; however, in Step behavior. Teacher communicates the impact of
3, the student performs the task and the teacher changing the targeted behavior from Step 1. In
self-instructs. An assumption that being made in Step 2, the “why” or rationale for improving the
this teaching sequence is that performing the task behavior described in Step 1 is provided and/or
and self-instructing may be too daunting for elicited, promoting student ownership and moti-
many students, hence the reason for phasing in vation for change.
the self-instructions. Step 3: Provide practice of the desired
Step 4: Student performs and instructs. In behavior and name the mastery criteria. The
this step, the student is asked to repeat the purpose of Step 3 is to ensure the student is
self-instructions and to perform the target familiar with the examples and non-examples
behavior. After observing the teacher demon- named in Step 1, remind the student of the ben-
strate both the self-instructions and task perfor- efits identified in Step 2, and ensure the student
mance, the student is supported to perform what can perform the desired behavior (i.e., the
they have observed in previous phases. examples) to the desired performance level.
Teaching self-monitoring skills. Agran, Step 4: Introduce self-monitoring. Step 4
King-Sears, Wehmeyer, and Copeland (2003) focuses on teacher demonstration of the
provided steps to teaching students to self-monitoring system. Students are not
self-monitor. responsible, at this stage, for proficiently and
Step 1: Introduce the behavior to be self- independently using self-monitoring. Instead,
monitored. In Steps 1–3, teachers work with they are simply introduced to the self-monitoring
students to identify the specific behavior that system and shown how to use it. For many stu-
students will self-monitor, but the dents, these steps can be accomplished in one
self-monitoring process is not used yet. The instructional session. For some students, the
focus is initially on naming the behavior and self-monitoring system will be a tally card where
showing examples and non-examples of the tar- the student makes a symbol to indicate they are
get behavior. Later steps will incorporate using on-task, an index card divided into two columns
self-monitoring in role-play and then the natural indicating appropriate or inappropriate behaviors,
setting, but these issues are not the focus for or a worksheet with yes/no responses so that
initial steps. Usually, students are involved in students can record whether they were paying
Steps 1–3 for one instructional session, and then attention and following directions or not. For
they move to the next sequence of steps. other students, self-monitoring could be putting a
In this step, teachers work with students to marble in a jar for each self-initiated behavior,
name the desired behavior and demonstrate placing a checkmark after a picture indicating a
examples and non-examples. Teachers often find task is completed, or moving an object from one
it easiest to begin with the non-examples for Step side of a magnet board to another to indicate that
1, as those are the behaviors that the student is they are on the next problem. Pictures and
already doing that the teacher wants to see objects are appropriate to use on self-monitoring
242 M.L. Wehmeyer and K.A. Shogren

devices for younger students or students who Step 6: Provide guided practice for using
have limited expressive language skills. Com- self-monitoring and role-play the desired
mercially available picture communication sys- behavior. This step involves the student’s prac-
tems are excellent resources from which to select tice of the strategy. Prior to this, only demon-
pictures, and some teachers may select to use stration has occurred. Now, the students begin to
technology as or with a self-monitoring device. use the self-monitoring system more and more on
At this point, teachers show students the their own, but within controlled or role-play
self-monitoring system, tell the students how to situations.
use it, and remind students the benefits of using Step 7: Assess student’s mastery of self-
self-monitoring to enhance specific behaviors. monitoring within role-play situations. After
The teacher also should work with the student to several role-play situations have occurred, con-
determine what will cue the student to sider using a checklist to assess how well the
self-monitor. A variety of cueing systems can be students can use self-monitoring and whether
used, and most are audible cues, from timers, to students remember why they are using
alarms on smartphones, to natural events (when a self-monitoring (i.e., the benefits and motivation
teacher gives a direction, when it is time to for them to enhance behaviors). Some students
change activities). and teachers initially consider this checklist
Step 5: Model the self-monitoring process assessment a “test,” but it is not a test. In fact,
while performing the desired behavior. During some teachers find it very beneficial to share the
this step, teachers go beyond telling the student checklist with students so they know in advance
about the self-monitoring device and how to use what they need to do well and remember. Con-
it—the teacher thinks aloud as if they were the tinue role-plays during this step, since students
student and talks about how to make decisions are not expected to demonstrate mastery on their
for notations on the self-monitoring device. first try. Consider that Step 7 is continued guided
During this modeling step, it is helpful for the practice in which the students’ proficiency with
teacher to fill out the self-monitoring system using self-monitoring increases with continued
using the examples and non-examples of the use.
targeted behavior. In other words, the teacher’s Step 8: Discuss the authentic situations in
modeling includes the decision making that stu- which self-monitoring will be used. Although
dents will need to discriminate whether their teachers’ goals may be to have the student
behaviors were appropriate or inappropriate. If a effectively self-monitor across the school day, it
teacher only focuses on appropriate behaviors, is generally better to target one natural situation
then the student will be less clear about how to and focus there initially. In this way, success
record or monitor inappropriate behaviors. with self-monitoring is more easily observed
Most instructional time is spent in Steps 6 and (e.g., teachers are focused on one specific situa-
7, when the students practice using the tion or time frame instead of the whole day),
self-monitoring procedures in role-play situa- feedback specific to one situation is more effi-
tions. Then, the specific situation or setting in cient to provide (because the teacher has been
which the students will use self-monitoring is able to observe during that situation), and both
discussed, and practice sessions are provided. the teacher and the student will find it more
When students begin using self-monitoring motivational to use self-monitoring in other sit-
independently in the natural setting, teachers uations once success in one situation has been
continue data collection (which began in the achieved. Discuss the real situation with the
initial phase when teachers measured students’ student—specifically, when and where to use
current performance level of a behavior) so that self-monitoring. Consider during Step 8 any
they can determine whether self-monitoring has logistical factors that will need to be worked out
achieved its intended outcome—students for a student to get and return the self-monitoring
assuming more control over their own behaviors. system from a specific place.
16 Goal Setting and Attainment and Self-regulation 243

Step 9: Provide independent practice oppor- self-regulation strategies has been well estab-
tunities within the natural situation. Students lished as an effective practice in promoting pos-
may not need a lot of additional practice oppor- itive outcomes across the life span. It is clear that
tunities, but teachers should alternate between people with intellectual and developmental dis-
this and the next step to determine how much abilities can benefit from efforts to promote goal
practice as necessary. setting and attainment and the use of
Step 10: Assess student’s master of self- self-regulation strategies and, when they do,
monitoring within the natural setting. When a benefit across multiple life domains.
student begins using self-monitoring in the nat-
ural setting, more frequent observations are
necessary to ensure the monitoring process is
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Author Biographies
Michael L. Wehmeyer Ph.D., is the Ross and Mariana Karrie A. Shogren Ph.D., is a Professor of Special Educa-
Beach Distinguished Professor of Special Education and tion, Senior Scientist at the Life Span Institute, and Director
Senior Scientist and Director, Beach Center on Disability, at of the Kansas University Center on Developmental Disabili-
the University of Kansas. Dr. Wehmeyer’s research focuses ties at the University of Kansas. Dr. Shogren has published
on self-determination, understanding and conceptualizing extensively in the intellectual and developmental disabilities
disability, the application of positive psychology to disability, field, and her research focuses on assessment and intervention
conceptualizing and measuring supports and support needs, in self-determination and positive psychology, and the
and applied cognitive technologies. He is the co-editor of application of the supports model across the lifespan. She is
American Association on Intellectual and Developmental co-Editor of Remedial and Special Education and Inclusion.
Disabilities ejournal, Inclusion.
 Supported Decision-Making
as an Alternative to Guardianship 17
Jonathan G. Martinis, Tina M. Campanella, Peter Blanck,
Michael L. Wehmeyer and Karrie A. Shogren

Self-determination, as discussed in detail in quality of life diminishes. Research on motiva-

Chap. 5, has been shown to contribute to more tion using Self-Determination Theory (discussed
positive quality of life outcomes for people with in Chap. 19) has shown that people who are not
intellectual and developmental disabilities autonomously motivated can feel “helpless,
(Lachapelle et al., 2005; Wehmeyer & Schwartz, hopeless, and self-critical” (Deci, 1975, p. 208)
1997). This is likely to be the case because, as and experience symptoms similar to clinical
discussed in Chap. 5, people who are more depression, including “low self-esteem, passiv-
self-determined are more likely to be integrated ity, and feelings of inadequacy and incompe-
into their community, employed, and safer tency,” severely impacting their ability to
(Khemka, Hickson, & Reynolds, 2005; Powers function (Winnick, 1995, p. 21).
et al., 2012; Shogren, Wehmeyer, Palmer, Societies have long appointed others—such as
Rifenbark, & Little, 2013; Wehmeyer & Palmer, guardians, and other substitute decision-makers
2003). By the same token, when people with —for people they deem “by reason of age or
disabilities have limited self-determination, their disability … incapable of making such decisions
for themselves” (Winick, 1995, p. 27). Legally
authorized substituted decision-making began as
early as in ancient Rome, where curators were
J.G. Martinis (&)
Burton Blatt Institute, Syracuse University, 1667 K appointed for people with disabilities (Fleming &
Street, NW, Suite 640, Washington, DC 20006, USA Robinson, 1993). The practice continued in
e-mail: [email protected] England, for example, through the early 1324
T.M. Campanella statute, De Praerogativa Regis, authorizing
Quality Trust for Individuals with Disabilities, 4301 appointment of “committees” to make decisions
Connecticut Avenue, NW, Suite 310, Washington,
for “idiots” and “lunatics” (O’Sullivan, 2002;
DC 20008, USA
e-mail: [email protected] Regan, 1972). Years later, the USA followed this
tradition, granting state courts the authority to
P. Blanck
Burton Blatt Institute, Syracuse University, 900 appoint guardians (O’Sullivan, 2002). Even
South Crouse Avenue, Crouse-Hinds Hall, Suite today, while each state has its own guardianship
300, Syracuse, NY 13244, USA laws, a person with a disability typically is placed
e-mail: [email protected]
under a guardianship arrangement when the court
M.L. Wehmeyer
K.A. Shogren determines that he or she cannot make decisions,
Department of Special Education, University of
and when there are believed to be no other
Kansas, 1200 Sunnyside Ave., Rm 3136, Lawrence,
KS 66045, USA decision-making options that would be
e-mail: [email protected] less-restrictive than guardianship (Blanck &
K.A. Shogren Martinis, 2015; Quality Trust for Individuals
e-mail: [email protected] with Disabilities, 2013).

© Springer International Publishing AG 2017 247

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_17
248 J.G. Martinis et al.

Throughout its history, guardianship has been Act of 1973, 2014), the number of American
viewed as benevolent and non adversarial adults placed under guardianship has approxi-
because “all parties were on the same side in mately tripled during the years from 1995 to
seeking the well-being of the respondent/ward” 2011 (Reynolds, 2002; Schmidt, 1995; Uekert &
(Wright, 2010, p. 352). Consequently, there Van Duizend, 2011). Only recently have state
remains a fundamental disconnect between legislatures, state and federal policymakers, and
modern research on the importance of self- researchers and practitioners acknowledged the
determination and current views and practice of need to implement decision-making options that
guardianship (Millar, 2007). Overly broad and are less-restrictive than plenary guardianship to
undue guardianship, for example, a plenary advance individual self-determination (Kohn,
guardianship, imposed on an individual who is Blumenthal, & Campbell, 2013).
able to make his or her own decisions (Hatch,
Crane, & Martinis, 2015), “not only divests the
individual of the important right to self- Supported Decision-Making
determination but also marginalizes that person as an Alternative to Guardianship
and removes him or her from a host of interac-
tions involved in decision making” (Salzman, Supported Decision-Making (SDM) is “an alter-
2010, p. 160). native to and an evolution from guardianship”
People with intellectual and developmental (Martinis, 2015a, p 109). While there is no sin-
disabilities subjected to such guardianships often gular model of SDM (Quality Trust for Individ-
experience a “significant negative impact on their uals with Disabilities, 2013), in general, people
physical and mental health, longevity, ability to use SDM when they engage meaningfully with
function, and reports of subjective well-being” friends, family members, and professionals to
(Wright, 2010, p. 354). This effect has been understand the daily situations and choices they
compounded by the fact that, historically, pro- face in order to make their own decisions
fessional practices have questioned the capacity of (Blanck & Martinis, 2015). In this way, SDM is
people with intellectual and developmental dis- similar to “what happens for most adults when
abilities to make their own decisions (see they make decisions such as whether to get car
Chap. 11 for full discussion of decision-making repairs, sign legal documents and consent to
skills and people with intellectual and develop- medical procedures: they seek advice, input and
mental disabilities) and have imposed legally information from friends, family or professionals
mandated limitations on personal control (Blanck, who are knowledgeable about those issues, so
1998, 2016). Many times, stereotyped judgements they can make their own well-informed choices”
about individual capacity are reached, even (Martinis, 2015a, p. 109).
though opportunities for life experience and Although Canada’s province British Colum-
learning related to decision-making have been bia, Sweden, and certain German states had
limited or nonexistent. already enacted versions of SDM, international
In spite of growing evidence to the contrary, recognition and momentum in favor of SDM was
society continues “to hold deeply embedded spurred by the United Nations Convention on the
tendencies toward protection over autonomy, and Rights of Persons with Disabilities (CRPD)
courts continue to issue guardianship orders that (Dinerstein, Grewel, & Martinis, 2016). Entered
are not necessary and are overly broad in scope” into force in 2008, and thereafter ratified by over
(Salzman, 2010, p. 178). Indeed, despite federal 150 countries, the CRPD addresses areas critical
laws and policies mandating equal protections to the human rights of people with disabilities
for people with disabilities and, as such, ensuring around the world, including access to employ-
greater freedom and liberty (e.g., Americans with ment, community integration, recreation, voting,
Disabilities Act, 2006; Developmental Disabili- and health care (United Nations, 2006). Article
ties and Bill of Rights Act, 2006; Rehabilitation 12 of the CRPD creates a right to and legal
17 Supported Decision-Making as an Alternative to Guardianship 249

mandate for SDM, declaring that all “persons supported decision making services to persons
with disabilities enjoy legal capacity on an equal with intellectual and developmental disabilities
basis with others in all aspects of life” and have a and persons with other cognitive disabilities who
right to the “support they may require in exer- live in the community” [Tx. Gov’t Code Ann. §
cising their legal capacity” (United Nations, 531.02446 (2009) (expired on Sept. 1, 2013)].
2006, p. 9). The program utilized volunteers trained to sup-
In the USA, SDM increasingly is recognized port people with disabilities in making “life
and implemented as an alternative to plenary decisions such as where the person wants to live,
guardianship (Kohn et al., 2013). In 2012, a New who the person wants to live with, and where the
York state court terminated the guardianship of person wants to work, without impeding the
Dameris L. because she is “able to engage in self-determination of the person.” After the pilot
supported decision making” (In re Dameris L., program expired, Texas passed a new law rec-
2012). The court stated “proof that a person with ognizing “Supports and Services”—formal and
an intellectual disability needs a guardian must informal resources and assistance enabling peo-
exclude the possibility of that person’s ability to ple to care for their health, manage their finances,
live safely in the community supported by fam- and make personal decisions—as an alternative
ily, friends, and mental health professionals” (In to guardianship (Tex. Est. Code Ann. §1101.101,
re Dameris L., 2012). The court hailed Damaris’ 2015). Texas also amended its guardianship law
SDM network of people who “understood [their] to require courts to find by clear and convincing
role, not as deciding for her, but in assisting her evidence that a person cannot make decisions
in making her own decisions,” as “a perfect with the assistance of such “Supports and Ser-
example of the kind of family and community vices” before placing the person under
support that enables a person with an intellectual guardianship (Tex. Est. Code Ann. §1002.031,
disability to make, act on, and have her decisions 2015). In addition, Texas passed other laws
legally recognized” (In re Dameris L., 2012). giving legal recognition to SDM agreements
In 2013, in a case described in detail below, (Tex. Est. Code. Ann. §1357.003, 2015) and
Margaret “Jenny” Hatch, a woman with Down providing a model form that people may use to
syndrome, defeated a petition to place her under designate supporters to provide assistance in
a permanent plenary guardianship because she making life decisions (Tex. Est. Code. Ann.
had established an effective SDM network (Ross §1357.056, 2015).
v. Hatch, 2013). At trial, Ms. Hatch presented In 2014, the Virginia General Assembly
evidence that she worked with supportive friends authorized a study of SDM and a report to
and professionals to make her own decisions. “recommend strategies to improve the use of
The court named Ms. Hatch’s preferred sup- supported decision-making in the Common-
porters as her temporary limited guardians for wealth and ensure that individuals are consis-
one year, “with the … goal of transitioning to the tently informed about and receive the
supportive [sic] decision making model.” In so opportunity to participate in their important life
ruling, the court charged the temporary guardians decisions” (H.J.R. 190, Reg. Sess. 2014). The
to “assist [Ms. Hatch] in making and imple- resultant report called on Virginia to increase the
menting decisions we have heard termed ‘sup- public’s knowledge and use of SDM, including
ported decision making’” (Ross v. Hatch, Final amending state law to recognize SDM as a “le-
Order, 2013). gitimate alternative to guardianship”; creating a
In the USA, state legislatures, policymakers, legal requirement that guardians be trained in and
and professional organizations have begun to commit to using SDM; and developing a state-
recognize and recommend SDM as an alternative wide, standard training on SDM for professionals
to guardianship. In 2009, the Texas State legis- (H.J.R. 190, Nov. 2014).
lature passed legislation authorizing and funding Also in 2014, at the US federal government
a pilot program to “promote the provision of level, the Administration on Community Living
250 J.G. Martinis et al.

in the US Department for Health and Human which option is preferred. (Campanella, 2015,
Services made funding available to create a p. 35).
national training and technical assistance center Thus, SDM involves people and their chosen
on supported decision-making (Blanck & Mar- supporters discussing areas and arenas where
tins, 2015). The Administration cited the impor- they may want support in making decisions and
tance of people “retain[ing] their own decision- exploring ways to provide that support. A Sup-
making authorities … with the assistance of ported Decision-Making Brainstorming Guide
appropriate services and supports” (Administra- developed by the American Civil Liberties Union
tion on Community Living, 2014, p. 2). and Quality Trust for Individuals with Disabili-
In 2015, the National Guardianship Associa- ties encourages SDM teams to think broadly
tion (NGA), an organization representing more about where the person may need or want sup-
than 1000 guardians across the USA whose port and the types of support that can be pro-
mission is to “advance the nationally recognized vided, and to memorialize them in writing
standard of excellence in guardianship” (http:// (American Civil Liberties Union and Quality
www.guardianship.org/overview.htm), issued its Trust for Individuals with Disabilities, 2016). In
formal position statement on Guardianship, Sur- that way, the guide gives structure to a conver-
rogate Decision-Making, and Supported sation that “must remain focused on the person
Decision-Making. The NGA found: “Supported AND what the person wants” (Campanella,
decision making should be considered for the 2015, p. 36). For example, to help SDM teams
person before guardianship, and the supported explore decisions and support around what to do
decision-making process should be incorporated during the day, the guide provides the following
as a part of the guardianship if guardianship is information and suggestions:
necessary” (National Guardianship Association,
2015, p. 2). • If she does whatever she feels like and no one
ever discusses her work, activities, or social
life with her, that is not supported decision-
Supported Decision-Making making.
as an Alternative to Guardianship • If someone else decides what she should do
in Practice and who she should see and forces her to do it
regardless of what she wants, that is not
Supported Decision-Making builds on the dec- supported decision-making.
ades of research showing the benefits of • Anything else—helping the person find a job
increased self-determination for people with based on her interests, responding to her
disabilities (Shogren et al., 2013; Wehmeyer & preferences about what she does every day,
Schwartz, 1997) because it is “based on respect teaching her to take transit to get where she
and uses the person’s expressed will and prefer- wants to be, talking about safety, consent, and
ences to guide action” (Campanella, 2015, p. 35). choice in relationships, helping her think
Supporters are charged to engage with the person about different options and decide which is
to explore his or her interests and desires and use the best fit for her—is supported decision-
them as the basis for exploring and implementing making (American Civil Liberties Union and
possible decisions. As one leading advocate Quality Trust for Individuals with Disabili-
writes: ties, 2016, p. 3).
For example, if the choice is related to where to
live, support starts with seeking to understand what Further, the guide directs teams to consider
experience the person already has and the prefer- “How we work together to help the person with a
ences he or she expresses. Additional activities are
then planned to help the person learn about other disability decide how to spend his/her time” and
various living options that are available and assess “additional supports that we might want to start
17 Supported Decision-Making as an Alternative to Guardianship 251

using” (American Civil Liberties Union and and when (e.g., American Civil Liberties Union
Quality Trust for Individuals with Disabilities, and Quality Trust for Individuals with Disabili-
2016, p. 3). The Brainstorming Guide, which ties, 2016; National Resource Center for Sup-
also suggests ways to engage in SDM for ported Decision-Making, 2015). A more formal
financial and health care decisions, illustrates approach can involve a Micro Board or Circle of
how SDM is “not a contract so much as it is an Support (e.g., Kohn et al., 2013). These differ
authorization. The adult authorizes another to be from the “traditional” view of SDM because they
the person to advise and consult with them” typically involve a larger group of supporters,
(Jameson, Risen, Polychronis, Trader, Mizner, similar to a personal board of directors (e.g.,
Martinis, & Hoyle, 2015, p. 38). Kohn, et al., 2013). In these arrangements, the
The SDM relationship may become strained, group meets regularly to talk with and advise the
however, when the person wishes to do some- person, offer options, and help him or her explore
thing that his or her supporters feel is objectively and consider the decisions that must be made.
unwise or not what they would do in the situa- These models, and other forms of SDM, are
tion. In such instances, supporters are encour- premised on supporters providing the assistance
aged to remember that all decisions made by all the person wants and needs “to understand rele-
people, with and without disabilities, involve risk vant information, issues, and available choices,
(Campanella, 2015). Therefore, the fact that a to focus attention in making decisions, to help
person makes a decision that others may not weigh options, to ensure that decisions are based
agree with is not and must not be seen as proof on his or her own preferences, and … to interpret
that the person cannot make decisions. Instead, it and/or communicate his or her decisions to other
is an example of the person accepting the “Dig- parties” (Salzman, 2011, p. 306). Hence, in
nity of Risk” that all people have when they live entering into and implementing SDM relation-
independently, as full members of society, and ships, all parties recognize:
make decisions regarding their lives (Salzman,
2010, p. 23). Accordingly, it is the supporters’ (1) that the person has the right to make his or
obligation to “provide people with the opportu- her own decisions;
nity and individualized supports needed to (2) that the person can receive support in making
develop the skills and abilities needed in different decisions without giving up his or her right
situations” while always having the option of to be the final decision-maker;
“respectfully declining to assist the person to (3) that there are many ways to receive support
pursue certain goals” (Campanella, 2015, p. 36). in making or communicating decisions
In that way, the interplay between person and including “through such means as interpreter
supporter maintains the “relationship of give and assistance, facilitated communication, assis-
take” that characterizes all supportive relation- tive technologies and plain language” (Din-
ships (Campanella, 2015, p. 36). erstein, 2012, pp. 10–11).
Because every person makes decisions in his
or her own way (Campanella, 2015), SDM can Through these methods, SDM may increase
be “of more or less formality and intensity” self-determination by ensuring that the person is
depending upon the person’s abilities and pref- and remains the causal agent over his or her life
erences (Dinerstein, 2012, p. 10). Support may by being the focus of the decision-making pro-
include informal advice from friends, family, and cess and the final decision-maker. In contrast to
others who “speak with, rather than for, the traditional guardianship, which “divests the
individual with a disability” (Dinerstein, 2012, individual of the ability to make crucial
p. 10). Others may opt for more formal self-defining decisions” (Salzman, 2011, p. 291),
arrangements, like private SDM agreements or SDM “retains the individual as the primary
legal Power of Attorney and Advanced Direc- decision maker, while recognizing that the indi-
tives which spell out who will give support, how, vidual may need some assistance … in making
252 J.G. Martinis et al.

and communicating a decision” (Dinerstein, British Columbia

2012, p. 10). Accordingly, using SDM may
provide people access to the research-recognized Since 1996, British Columbia has used its Rep-
benefits of self-determination, including resentation Agreement Act to implement
increased “independence, employment, and SDM-like “Representation Agreements” in
community integration” (Blanck & Martinis, which the person with disabilities appoints a
2015, p. 31). Figure 17.1 provides a case study “representative” to provide support (Represen-
of one SDM case. tation Agreement Act, R.S.B.C. 1996, c. 405).
The “representative” is then authorized to assist
the person in directing his or her financial, health,
Illustrative International and other affairs (Crane, 2015). The Represen-
and Domestic Models of Supported tation Agreement Act deviates from recognized
Decision-Making practices in SDM because it empowers the
“representative” to disregard the person’s wishes
As has been discussed, several countries, indi- if he or she feels they are not “reasonable”
vidual states, and leading organizations have (Crane, 2015, p. 195). However, Crane (2015)
launched SDM programs and models designed to found that people using representation agree-
help people with disabilities access and imple- ments worked with their representatives several
ment the support they need and want to make times per week, suggesting that the system was
their own decisions. Several such efforts are increasing people’s self-determination and per-
summarized in this section. sonal involvement.

When Margaret “Jenny” Hatch was 29 years old, she lived in her own apartment in the
community, held the same job for five years, had an active social life, volunteered on
political campaigns, and was involved in her church (Hatch, 2015). Unfortunately, at
this time, Jenny, who has Down syndrome, was injured in a car accident and had back
surgery.
While she was in the hospital, the lease on her apartment expired. When no
one else would take her in, she moved in with her friends, Jim Talbert and Kelly
Morris (Hatch, 2015). Shortly thereafter, her parents moved for full guardianship over
her (Hatch, Crane, & Martinis, 2015). They argued to the court that, due to her Down
Syndrome, Jenny could not make decisions for herself (Ross v. Hatch, Petition, 2013).
At a preliminary court hearing, a doctor who examined Jenny testified, “She’s
going to need assistance to make decisions regarding her health care, her living
arrangements and such like that. She will need someone to guide her and give her
assistance” (Ross v. Hatch, 2013, see testimony of Robert Dinerstein citing doctor, p.
64). In reviewing Jenny’s ability to manage her finances, understand legal issues,
complete activities of daily living, the doctor noted that she may be able to do those
and other things if she “had assistance” (Ross v. Hatch, 2013, testimony of Robert
Dinerstein, p. 66). When asked what would be best for Jenny, the doctor testified:
I believe that what would be beneficial to Jenny is that she is afforded
the opportunity to have individuals around her who support her and
love her, who give her the support she needs (Ross v. Hatch, 2013,
testimony of Robert Dinerstein, p. 71)
Fig. 17.1 Supported decision-making case study
17 Supported Decision-Making as an Alternative to Guardianship 253

After that hearing, the court ordered Jenny into a temporary guardianship pending a
full trial (Ross v. Hatch, Order Appointing Temporary Guardians, 2013). The
guardians placed her in a segregated group home, where her cell phone was taken
away, her Facebook password was changed, and she was not allowed to see her friends
or go to her church (Hatch, Crane, and Martinis, 2015). Instead of working at her job,
which she loved, she was forced to work in a segregated workshop where she
“snapped snaps together” (Hatch, 2015). When she said she wanted to go back to her
old job and church, and live with her friends, she was told “get used to living in a
group home” (Hatch, 2015).
At trial, represented by the first author of this chapter, Jenny presented
evidence that she can, and does, make her own decisions using SDM. An expert,
Professor Robert Dinerstein, stated that the “assistance” the doctor said Jenny needs
could be provided through SDM. When shown the doctor’s testimony that it would be
“beneficial” for Jenny to have “individuals around her who support and love her and
give her the assistance that she needs,” Professor Dinerstein noted that was a good
description of what SDM does. He stated, “I might quote it the next time I write about
this. That’s exactly it. She even uses the word ‘support.’ Precisely” (Ross v. Hatch,
testimony of Robert Dinerstein, p. 71). For example, Jenny could receive “assistance”
to understand legal documents from people who explain them, using plain language
(Ross v. Hatch, testimony of Robert Dinerstein, pp. 66-67 2013). Professor Dinerstein
then reviewed evidence that Jenny had signed a Power of Attorney, with her parents’
and an attorney’s support, years before. He stated that the support they provided–
explaining the document in plain language, giving her the opportunity to ask questions,
taking extra time to make sure she understood it–were “textbook” examples of SDM
(Ross v. Hatch, 2013, testimony of Robert Dinerstein, pp. 72-73).
Professor Dinerstein also reviewed evidence of support Jenny had received to
apply for services, authorized release of her medical records, and take part in her
Individualized Service Plan. In one instance, Jenny’s case manager testified that
Jenny was able to play a leading role in her Service Plan because they supported her
with “Explanations, examples are given, questions asked so that she can explain
herself and her questions to get the answers to put in her plan” (Ross v. Hatch, 2013,
testimony of Robert Dinerstein, pp. 77-78). He testified that this and other examples
of support Jenny received were types of SDM, stating, “I don’t know that [they]
realized it, but they have actually been providing supported decision-making here
without naming it as such” (Ross v. Hatch, testimony of Robert Dinerstein, p. 2013, p.
79).
Fig. 17.1 (continued)

Sweden person’s needs including “representation for

individual rights (e.g., making an application on
In Sweden, local courts are empowered to appeal for special services); supervision of
appoint a supporter, called a god man, for a financial matters (e.g., administering property),
person with a disability who has limitations in and/or attending to the person’s other needs for
decision-making (Herr, 2003). The god man is support and guidance” (Herr, 2003, p. 6). Like
appointed by the court with duties tailored to the the British Columbia law, however, the Swedish
254 J.G. Martinis et al.

Jenny also presented expert evidence on the importance of self-determination to people

with disabilities. Dr. Peter Blanck (co-author of this article) testified that studies show
that people with disabilities have better life outcomes when they have more control
over their lives (Ross v. Hatch, testimony of Peter Blanck, 2013). When asked if
people who used SDM had better lives, he stated “I would say, as a general matter,
independence in life, choice in life, personal focus leads generally in the research to
better quality of life outcomes” (Ross v. Hatch, 2013, testimony of Peter Blanck, p.
121). Like Professor Dinerstein, Dr. Blanck reviewed the doctor’s testimony that it
would be “beneficial” for Jenny to “have individuals around her who support her.”
When asked if this was a good description of what SDM provides, he stated “Very
much so” (Ross v. Hatch, 2013, testimony of Peter Blanck, p. 123).
In its Final Order, the court stated that Jenny would be placed under a limited
guardianship for one year, with the guardians having authority over “health and safety”
issues only and after giving “due deference” to Jenny’s wishes. The temporary
guardians would be Jenny’s chosen friends, Jim Talbert and Kelly Morris, who were
charged to “assist [Jenny] in making and implementing decisions we have heard
termed ‘supported decision making’” (Ross v. Hatch, Final Order, p. 5) (emphasis
added). Mr. Talbert and Ms. Morris were ordered by the court to remove Jenny from
the group home and “transition” her, in accordance with her wishes, from her group
home setting to a private residential environment (Ross v. Hatch, Final Order, p. 6).
The temporary guardianship order expired in in August of 2014. Jenny has
been living with her friends and making her own decisions, without a guardian and
using SDM, ever since. According to Jenny:
My life is much different now. I go to work and have my friends again.
I got to the mall and to the park with my friends. I have my cell phone
and computer. Jim and Kelly help me and support me. They help me
make good decisions. . . .Supported decision-making has helped me and
it can help many others (Hatch, 2015, p. 34).
Fig. 17.1 (continued)

statute does not follow all principles of SDM. legal tool and alternative to guardianship. The
First, where SDM is a voluntary relationship law defines the supporter’s functions, including
between a person and the supporters he or she helping the person obtain information, under-
chooses, a god man may be appointed whether or stand the information and the available alterna-
not the person wants it. Also, as in the British tives, and execute the decision. Significantly, the
Columbia law, the god man may take action or law states that supporters may not make deci-
make some decisions on behalf of the person sions on behalf of or instead of the person and
without the person’s consent (Crane, 2015). requires courts to consider SDM before ordering
a guardianship (Cannon, 2016).

Israel
American Models
Israel is, as of this writing, the most recent
country to implement SDM. In March of 2016, National Resource Center for Supported
the Israeli Knesset amended Israel’s Capacity Decision-Making. In 2014, after a competitive
and Guardianship Law to recognize SDM as a selection process, the National Resource Center
17 Supported Decision-Making as an Alternative to Guardianship 255

for Supported Decision-Making (NRC SDM) need support in making decisions and to desig-
received funding from the Administration on nate supporters to help them reach their deci-
Community Living in the US Department for sions. Supporters are required to agree to respect
Health and Human Services to create “a national the person’s choices and decisions (Center for
training and technical assistance center on … Public Representation, 2015).
supported decision making” (Administration on
Community Living, 2014, p. 2).
The NRC SDM works to increase knowledge Designing Supports to Enable
and implementation of SDM through education, Supported Decision-Making
research, and dissemination of best practices in
SDM (Blanck & Martinis, 2015). It maintains One component of the previously mentioned
research and resource libraries, including the National Resource Center for Supported
most recent studies and commentaries on SDM, Decision-Making involves the design of an
model SDM forms from across the country, and assessment to enable people with intellectual and
stories of people who have successfully used developmental disabilities and their support net-
SDM (National Resource Center for Supported work what supports may need to be put into
Decision-Making, 2016a, b). The NRC SDM place to enable maximum involvement in the
sponsors and engages in research to document decision-making process. Shogren & Wehmeyer,
the effects SDM has on people’s quality of life (2015) proposed a framework within which to
and has presented to thousands of people, fami- design such an assessment that is based upon
lies, supporters, and professionals on the positive social-ecological models of disability that
aspects and implications of SDM. emphasize disability as a “state of functioning
Texas. As of this writing, Texas is the only resulting from the interaction between personal
US state that has fully implemented a law rec- capacities and environmental or contextual
ognizing SDM. The Texas law authorizes people demands” (Shogren & Wehmeyer, 2015, p. 19)
to create, and gives legal recognition and force rather than as a deficit within the person. Based
to, SDM agreements (Tex. Est. Code. Ann. upon a comprehensive review of the literature in
§1357.003, 2015). Under the law, people may psychology, education, social welfare, and rela-
use a model form to designate supporters to help ted disciplines, Shogren, Wehmeyer, Lassman
them with life choices and tasks such as “ob- and Forber-Pratt (in press) suggested that to
taining food, clothing, and shelter,” “taking care understand and apply supports for decision-
of my physical health,” and “managing my making to enable SDM, there is a need to
financial affairs.” (Tex. Est. Code. Ann. understand (a) contextual factors relevant to
§1357.056, 2015). People may also create their decision-making, (b) environmental demands for
own forms, identifying areas where they choose decision-making, and (c) supports needed
to receive decision-making assistance, as long as for decision-making. Based on an understanding
the agreements are substantially similar to the of these three domains, personalized systems of
model. support for decision-making can be developed that
Massachusetts. Two Massachusetts organi- facilitate self-determination and causal agency in
zations, the Center for Public Representation and decision-making, matched to the specific demands
Nonotuck Resource Associates, jointly operate of the environment, personal characteristics, and
an SDM Pilot Project designed to support people support needs of each person. Ongoing activities
with intellectual and developmental disabilities within the NRC SDM are developing an assess-
enter into SDM agreements and create SDM ment system based upon this framework that will
networks to make decisions (Center for Public support people with disabilities and their sup-
Representation, 2015). The Pilot Project works porters to identify and put in place individualized
with people to develop and implement Repre- supports that enable them to participate maximally
sentation Agreements to identify areas where in the decision-making process.
256 J.G. Martinis et al.

Supported Decision-Making: Next self-monitor and self-evaluate progress toward

Steps those goals and decisions. This new line of study
is the first attempt to systematically and longi-
While preliminary research indicates that SDM tudinally study and document whether and, if so,
shows promise as a means of increasing people’s to what extent, SDM is a measurably effective
self-determination and improving life outcomes alternative to standard guardianship. Based on
(Blanck & Martinis, 2015), commentators cau- these efforts, the research program aims to
tion that presently there is a lack of data on its develop evidence-based best practices in SDM to
long-term use and effects (Kohn et al., 2013). To inform and enhance the lives of people with
address this gap in research, in 2015, the Burton disabilities, supporters, educators, researchers,
Blatt Institute, the Kansas University Center on and practitioners.
Developmental Disabilities, and Quality Trust for
Individuals with Disabilities began a five-year
project to systematically study whether and how Conclusion
people who use SDM show increases in
self-determination and improved life outcomes Supported Decision-Making shows great pro-
(Blanck, Wehmeyer, & Shogren, 2015). mise as an alternative to traditional guardianship,
This next-generation research on SDM will and a means of increasing self-determination for
involve conducting a set of studies across the people who historically have had their
USA with hundreds of people with intellectual decision-making rights restricted, substituted,
and developmental disabilities and other dis- and removed. As research and best practices
abilities to address the present gaps in the develop, SDM can serve as a way for people with
research (Blanck et al., 2015). For example, intellectual and developmental disabilities to be
studies will use the assessment instrument and remain the “primary causal agent” (Weh-
developed through the NRC SDM for primary meyer, 2005, p. 117) in their lives, encouraged
data collection on decision-making supports, and empowered to make their own decisions—
self-determination, quality of life, community choices “easy and hard, silly and significant …
living and participation, and other personal and that make us who we are and shape our life
environmental factors of interest. This data col- course” (Martinis, 2015b, p. 226).
lection will be supplemented by secondary data
collected on personal and environmental factors,
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Disabilities Act. University of Colorado Law Review, Program, Tex. Gov’t Code Ann. § 531.02446 (West
81, 157–244. 2009) (Expired 2013).
Salzman, L. (2011). Guardianship for persons with mental Wehmeyer, M. L. (2005). Self-determination and indi-
illness—a legal and appropriate alternative? St. Louis viduals with severe disabilities: Reexamining mean-
Journal of Health Law and Policy, 4, 279–329. ings and misinterpretations. Research and Practice for
Schmidt, W. C. (1995). Guardianship: Court of last Persons with Severe Disabilities, 30, 113–120.
resort for the elderly and disabled. Durham, NC: Wehmeyer, M. L., & Palmer, S. B. (2003). Adult
Carolina Academic Press. outcomes for students with cognitive disabilities
Shogren, K. A., & Wehmeyer, M. L. (2015). A framework three-years after high school: The impact of
for research and intervention design in supported self-determination. Education and Training in Devel-
decision-making. Inclusion, 3, 17–23. opmental Disabilities, 131–144.
Shogren, K. A., Wehmeyer, M. L., Lassman, H., & Forber Wehmeyer, M. L., & Schwartz, M. (1997).
Pratt, A. J. (in press). Supported decision-making: A Self-determination and positive adult outcomes: A
synthesis of the literature to guide assessment and follow-up study of youth with mental retardation or
intervention development. Education and Training in learning disabilities. Exceptional Children, 63, 245–
Autism and Developmental Disabilities. 255.
Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Winick, B. (1995). The side effects of incompetency
Rifenbark, G. G., & Little, T. D. (2013). Relationships labeling and the implications for mental health law.
between self-determination and postschool outcomes Psychology, Public Policy and Law, 1(1)‚ 6–42.
for youth with disabilities. The Journal of Special Wright, J. (2010). Guardianship for your own good:
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Tex. Est. Code Ann. §1357.003(2015).

Author Biographies Quality Trust as a strong, independent and effective advocacy

Jonathan G. Martinis, JD is Senior Director for Law and organization in the District of Columbia and is leading efforts
Policy of the Burton Blatt Institute at Syracuse University. In to improve community systems and supports for DC residents
this role, he leads BBI’s national and international efforts to with developmental disabilities and their families.
ensure that older adults and people with disabilities receive Peter Blanck, Ph.D., JD is University Professor and Chair-
appropriate supports and services, including Supported man of the Burton Blatt Institute at Syracuse University. Dr.
Decision-Making, to lead inclusive, independent, and Blanck holds appointments at the Syracuse University Col-
self-determined lives. leges of Law, and Arts and Sciences, David B. Falk College
Tina M. Campanella, MA is Chief Executive Officer for of Sport and Human Dynamics, School of Education, and the
Quality Trust for Individuals with Disabilities. Ms. Cam- Maxwell School of Citizenship and Public Affairs. Prior to his
panella has expertise in systems change, quality management appointment at Syracuse, Blanck was Kierscht Professor of
and improvement, disability policy and services development, Law and director of the Law, Health Policy, and Disability
leadership and management, meeting facilitation, advocacy, Center at the University of Iowa. Blanck is Honorary Pro-
and staff development. In her current role, she has established fessor, Centre for Disability Law & Policy, at the National
17 Supported Decision-Making as an Alternative to Guardianship 259

University of Ireland, Galway. Dr. Blanck has written articles American Association on Intellectual and Developmental
and books on the Americans with Disabilities Act (ADA) and Disabilities ejournal, Inclusion.
related laws, supported decision-making, and received grants Karrie A. Shogren, Ph.D. is a Professor of Special Educa-
to study disability law and policy. tion, Senior Scientist at the Life Span Institute, and Director
Michael L. Wehmeyer, Ph.D. is the Ross and Mariana of the Kansas University Center on Developmental Disabili-
Beach Distinguished Professor of Special Education and ties at the University of Kansas. Dr. Shogren has published
Senior Scientist and Director, Beach Center on Disability, at extensively in the intellectual and developmental disabilities
the University of Kansas. Dr. Wehmeyer’s research focuses field, and her research focuses on assessment and intervention
on self-determination, understanding and conceptualizing in self-determination and positive psychology, and the
disability, the application of positive psychology to disability, application of the supports model across the lifespan. She is
conceptualizing and measuring supports and support needs, co-Editor of Remedial and Special Education and Inclusion.
and applied cognitive technologies. He is the co-editor of
 Assistive Technology
18
Giulio E. Lancioni, Nirbhay N. Singh, Mark F. O’Reilly,
Jeff Sigafoos, Francesca Campodonico and Gloria Alberti

tion (happiness) more than on their

Introduction
limits/restrictions. One could also suggest that
the use of assistive technology is an apparently
Assistive technology is the general expression
functional strategy that is largely consistent with
used to refer to any technical device/resource that
the view of Positive Psychology and makes
can be employed to help persons with disabilities
this psychology’s objectives more realistically
(a) improve their general performance and social
achievable with persons with disabilities
image and (b) accordingly limit the negative
(Paweleski, 2016a, b; Szymanski, 2000).
aspects of their disabilities (Bauer, Elsaesser, &
The devices/resources employed as assistive
Arthanat, 2011; Belva & Matson 2013; Brown,
technology can vary widely depending on the
Schalock, & Brown, 2009; Lancioni, O’Reilly,
aim of the program and the characteristics of the
Singh, Oliva, & Groeneweg, 2003; Lancioni,
participants involved in it (Lancioni et al., 2016).
Singh, O’Reilly, Sigafoos, & Oliva 2014d;
Obviously, a program aimed at promoting com-
Reichle, 2011; Shih, 2011). In essence, it would
munication (requests) is likely to be based on the
be possible to suggest that the use of assistive
use of speech-generating devices (SGDs) while a
technology is aimed at promoting the achieve-
program aimed at promoting small responses and
ment of positive intervention outcomes and per-
independent access to environmental stimulation
sonal growth, with special emphasis on
in a largely passive, virtually motionless person
individuals’ final sense of success and satisfac-
is bound to be based on (a) microswitches (i.e.,
sensors) to record those responses and (b) a
computer system to regulate stimulation access in
G.E. Lancioni (&) relation to those responses (Gutowski, 1996;
Department of Neuroscience and Sense Organs, Mechling, 2006; Saunders, Smagner, &
University of Bari, Corso Italia 23, 70121 Bari, Italy Saunders, 2003; Sigafoos et al., 2009, 2013).
e-mail: [email protected]
The SGD technology used could vary for dif-
N.N. Singh ferent participants, based on (a) the number of
Medical College of Georgia, Augusta University,
requests the participants can handle (i.e., on the
Augusta, GA, USA
participants’ communication range and level of
M.F. O’Reilly
functioning), (b) the way the target requests are
Department of Special Education, University of
Texas at Austin, Austin, TX, USA represented, and (c) the participants’
sensory-motor conditions (Lancioni et al., 2016).
J. Sigafoos
School of Educational Psychology, Victoria Similarly, microswitches selected for promoting
University of Wellington, Wellington, New Zealand small responses may differ based on the partici-
F. Campodonico
G. Alberti pants’ motor repertoire (i.e., on the responses
Lega F. D’Oro Research Center, Osimo, Italy viable for them). For some participants, hand or

© Springer International Publishing AG 2017 261

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_18
262 G.E. Lancioni et al.

finger movements may represent simple and promote basic activity or assembly-task engage-
easily realistic responses that can be detected via ment and mobility, and (f) programs based on
a pressure or tilt microswitch (Lancioni, Siga- technology packages to promote contact/
foos, O’Reilly, & Singh, 2013b). For some other communication with distant partners. The pro-
participants, these movements may be largely grams and related technology arrangements are
unrealistic. For these latter participants, the most illustrated through summary descriptions of
usable responses might involve eyelid or lip studies published in the area. The final part of the
movements that can be detected via optic chapter formulates a number of considerations
microswitches. about the studies (programs and related tech-
In light of the above, one can argue that nologies) reviewed, analyzes the implications of
assistive technology solutions need to be envis- the studies and their outcomes for daily contexts,
aged and selected in relation to the characteristics and envisages some new, possible developments
of the participants involved in the intervention in the area (Lancioni et al., 2007a, Lancioni,
programs and the general education/ Singh, O’Reilly, Sigafoos, & Oliva, 2014e, 2016;
rehabilitation objectives of those programs Rispoli et al., 2010; Sigafoos et al., 2009,
(Bauer et al., 2011; Borg, Larsson, & Östergren, Sigafoos, O’Reilly, Lancioni, & Sutherland,
2011; Burne, Knafelc, Melonis, & Heyn, 2011; 2014a; Thunberg, Ahlsén, & Sandberg, 2007).
Lancioni et al., 2013b). This implies that the Table 18.1 presents a brief map of the chapter by
development of technological resources needs to listing (a) the research areas covered in the
be pursued within a work group that includes chapter and (b) the studies summarized in the text
(a) expertise in assessing the persons with dis- for illustrating the technology and intervention
abilities and determining the most relevant conditions available within each of those areas.
education/rehabilitation objectives for them as
well as (b) expertise in designing the technology
and the intervention, that is, professionals who Microswitch-Based Programs to Help
share their knowledge for planning and realizing Persons with Pervasive Disabilities
practical technology solutions and then adapting Acquire/Strengthen Small Responses
those solutions into fitting intervention programs to Connect with Their Immediate
(Borg et al. 2011; Burne et al. 2011; Lancioni Environment
et al., 2013b, 2014d; Rispoli, Franco, van der
Meer, Lang, & Camargo, 2010). Persons with pervasive motor and/or multiple
This chapter provides an overview of inter- disabilities tend to have a very poor motor
vention programs based on the use of assistive repertoire and fail to establish functional contacts
technology for persons with severe/profound and with the outside world. This causes the preclu-
multiple disabilities. Specifically, the chapter sion of any control of this world and of the
examines (a) microswitch-based programs to stimulation sources available in it (Holburn,
help persons with pervasive disabilities Nguyen, & Vietze, 2004; Lancioni et al., 2014e).
acquire/strengthen small responses to connect As a consequence of this situation, those persons
with their immediate environment, (b) mi- are generally reported to be withdrawn and pas-
croswitch-aided programs to help persons sive, and to lack initiative (i.e., remaining totally
develop assisted-ambulation responses, (c) mi- dependent on others). Passivity and dependence
croswitch-aided programs to help persons prevent any positive development (response/skill
increase adaptive responses and curb problem acquisition) and can also contribute to inadequate
behaviors or incorrect postures, (d) programs stimulation with negative implications for the
based on the use of SGDs to promote commu- persons’ sense of satisfaction and ultimately
nication (requests) and related engagement, quality of life (Brown, Hatton, & Emerson,
(e) programs based on technology packages 2013). Inadequate stimulation might imply
providing orientation cues and stimulation to excessive or insufficient levels of environmental
18 Assistive Technology 263

Table 18.1 Chapter summary map

Areas/Studies Number of Technology to detect responses or provide instructions
participants
Microswitch-aided programs to help persons develop small responses to connect with their immediate environment
Lancioni et al. 1 Optic microswitch to detect eyelid responses
(2005a)
Mechling (2006) 3 Pressure microswitches to detect hand/arm responses
Lancioni et al. 1 Optic microswitch to detect eyelid and mouth responses
(2007a)
Lancioni et al. 2 Camera-based microswitch to detect eyelid and mouth or eyelid responses
(2010a)
Lancioni et al. 2 Optic microswitch to detect eyebrow responses
(2013d)
Microswitch-aided programs to foster assisted ambulation
Lancioni et al. 1 Optic microswitches to detect step responses
(2005c)
Lancioni et al. 4 Optic microswitches to detect step responses
(2007d)
Lancioni et al. 5 Optic microswitches to detect step responses
(2010b)
Lancioni et al. 3 Optic microswitches to detect step or pushing responses
(2013g)
Microswitch-aided programs to increase adaptive responses and curb problem behaviors or postures
Lancioni et al. 1 Optic microswitch for adaptive step responses and pressure microswitch for
(2004) problem posture
Lancioni et al. 1 Pressure microswitch for adaptive hand response and tilt microswitch for
(2007g) problem behavior
Lancioni et al. 2 Wobble or vibration microswitch for adaptive hand response and optic
(2007f) microswitch for problem behavior
Lancioni et al. 2 Optic, tilt, and/or vibration microswitches for adaptive hand response and
(2013e) optic and tilt microswitches for problem behavior
Programs based on the use of SGDs to promote communication (requests)
Lancioni et al. 1 SGD with five symbols/requests activated via touch response
(2011d)
Van der Meer et al. 4 SGD with three symbols and one target request activated via touch response
(2012a)
Sigafoos et al. 2 SGD with one symbol/request activated via touch response
(2013)
Lancioni et al. 3 SGD with 15 mini objects or tags for as many requests activated via touch
(2016) response
Programs providing orientation cues and stimulation to promote basic activity or assembly-task engagement and
mobility
Lancioni et al. 3 Computer-aided system providing auditory cues to guide transition across
(2014a) activities
Lancioni et al. 5 Computer-aided system providing auditory cues to guide transition across
(2015) activities or object collection
(continued)
264 G.E. Lancioni et al.

(continued)
Areas/Studies Number of Technology to detect responses or provide instructions
participants
Lancioni et al. 3 Computer-aided system providing visual cues to guide object assembling
(2014b)
Programs based on technology packages to promote contact/communication with distant partners
Lancioni et al. 2 Computer-aided system for presenting partners for phone calls and an optic
(2013f) microswitch for choice response
Lancioni et al. 3 Computer-aided system for presenting partners for phone calls and a pressure
(2011c, 2014c) microswitch for choice response

inputs and/or forms of environmental inputs that 2013b; Mechling, 2006; Roche, Sigafoos,
might not be the most preferred by the persons. Lancioni, O’Reilly, & Green, 2015).
Maybe the only way to modify this kind of A few figures are included to provide basic
situation is to offer the persons a chance to use information on microswitches developed for
one or more of their small/minimal responses monitoring small/minimal responses. In particu-
functionally, that is, to establish contact with lar, the figures show simple representations
their environment and control some of the stim- (sketches) of microswitch devices for monitoring
ulation available. Such a chance can only mate- (a) sound-emission, that is, vocal responses
rialize if assistive technology is employed. In this (Figs. 18.1 and 18.2); (b) chin- and lip/mouth-
case, a microswitch-aided program would be movement responses (Figs. 18.3 and 18.4);
required, in which microswitches (sensors) suit- (c) eyelid responses (Figs. 18.5 and 18.6);
able to the persons’ available responses would be (d) forehead skin or eyebrow movement respon-
monitoring the occurrence of such responses and ses (Figs. 18.7); (e) smile responses (Fig. 18.8),
make them instrumental for the persons to access and (f) hand-closure responses (Fig. 18.9) (Lan-
environmental stimulation (Gutowski, 1996; cioni et al., 2013b). Figure 18.10 shows a face
Lancioni et al., 2010a; Mechling, 2006; Saunders with small dots (i.e., at the nose and lower lip) to
et al., 2003). For example, a pressure or touch enable a camera-based microswitch to monitor
microswitch inside the palm of the persons’ hand mouth-opening and/or mouth-closing movement
could enable their slight hand-closure responses responses (Lancioni et al., 2011a, b, 2013b).
to become functional to access environmental Five studies are summarized to illustrate
stimuli considered interesting for them (Lancioni microswitch-aided programs for promoting
et al., 2013b). Similarly, an optic microswitch on small or minimal responses and making them
the wheelchair’s headrest or on the side of the functional to access/control environmental stim-
persons’ mouth could allow their head sideward ulation (Lancioni et al., 2005a, 2007e, 2010a,
movements or mouth-opening responses to be
functional to access environmental stimuli
(Lancioni et al., 2014e). In practice,
microswitch-aided programs may be viewed as
intervention strategies, which help the participant
develop or strengthen simple responses and make
them functional to establish a link with the
environment and successfully control specific
events available in it. Those responses would be
totally irrelevant (i.e., unable to have any impact Fig. 18.1 Representation of a sound-detecting device
on the environment) without assistive technology linked to a throat microphone for monitoring vocal
(Holburn et al., 2004; Lancioni et al., 2007a, b, responses
18 Assistive Technology 265

response was an optic sensor on an eyeglass’s

frame (such as the one sketched in Fig. 18.5) that
the child wore. The occurrence of the response
triggered the microswitch and, consequently, the
control system, which enabled the child to access
stimulus events such as video-recordings and
moving lights, which were considered highly
preferred for him. The results of the study
showed that the child had a relatively high
response level during the intervention phases of
the study, obtaining extensive access to preferred
environmental stimuli.
Mechling (2006) taught two children and an
Fig. 18.2 Representation of a sound-detecting device
adolescent with profound intellectual disabilities
linked to throat and airborne microphones for monitoring
vocal responses and serious motor impairment to use hand/arm or
head movements in combination with pressure
microswitches to access various environmental
stimuli. Initially, sessions were divided into three
sections each of which involved a specific stim-
ulus condition, which the participants could
access with their target (hand/arm or head)
responses. The stimulus conditions involved
adapted toys and devices, commercial cause-and-
effect software, and instructor-created video pro-
grams. Subsequently, the sessions were no longer
involving different segments, and responding
allowed the participants to access the type of
stimulation that they had shown to prefer in the
first part of the study. The results of the initial
phase of the study indicated that the participants
had the largest increase in responding when this
allowed them to access the instructor-created
video stimulation condition. During the second
part of the study (when this stimulation condition
was regularly present), the response level
remained satisfactory for all participants.
Fig. 18.3 Representation of an optic sensor held under a Lancioni et al. (2007e) carried out a study
person’s chin for monitoring chin-movement responses with an adolescent with blindness, intellectual
disability, and pervasive motor impairment. The
2013d; Mechling, 2006). Lancioni et al. (2005a) study was to determine the possibility of
carried out their work with a child with con- replacing his head and hand responses (which
genital encephalopathy, profound multiple dis- were no longer feasible due to his physical
abilities including pervasive motor impairment. deterioration) with minimal eyelid and mouth
The response targeted for him consisted of movements within a microswitch-aided program.
repeated eyelid movements (i.e., two blinks The new movements, which consisted of eye-
within a 2 s interval). This response was already and mouth-opening, were introduced individu-
present in his repertoire, but at a relatively low ally and then combined. That is, the optic
frequency. The microswitch for monitoring the microswitches for the responses were
266 G.E. Lancioni et al.

Fig. 18.4 Representation of optic sensors held in front of a person’s mouth for monitoring changes in lip/mouth
positions (Frames I–III)

simultaneously available and the participant

could perform either one at will. Data showed
that the participant learned to perform the new
movements (responses) successfully and main-
tained them over time as indicated by a check
carried out 2 months after the end of the inter-
vention. In addition to the increase in the fre-
quencies of the aforementioned responses, the
participant showed mood improvement, that is,
he displayed multiple indices of happiness during
the program sessions. In conclusion, the program
was effective in enabling the participant to access
stimulation with minimal responses and reach a
Fig. 18.5 Representation of an optic sensor (infrared condition of satisfaction/enjoyment.
LED and infrared light-detection unit) mounted on an
eyeglasses’ frame for monitoring eyelid responses
Lancioni et al. (2010a) carried out two case
studies in which camera-based microswitch
technology was used for the eyelid and mouth
responses of two adult participants with profound
multiple disabilities and minimal motor behavior.
The first participant had previously used optic
sensors fixed on an eyeglasses’ frame. However,
a deterioration of his head posture was making
the use of the eyeglasses’ frame progressively
more difficult. The second participant did not
seem suited for using an optic microswitch to
detect his eyelid responses given his sideward
lying position and dystonic head movements.
The camera-based microswitches, in contrast
with the optic microswitches described above,
did not require the use of any material on the
participants’ face except for small color marks.
The camera system was located in front of the
Fig. 18.6 Representation of an optic sensor attached to a
person’s cheekbone with a paper sticker on the person’s participants and monitored the size of or dis-
eyelid for monitoring eyelid responses tances between those marks. Responses were
18 Assistive Technology 267

Fig. 18.7 Representation of an optic sensor attached to a person’s forehead for monitoring forehead skin movements
or eyebrow movements

encephalopathy with pervasive motor impair-

ment and presumably profound intellectual dis-
ability. They lacked any interaction with objects
and any recognizable form of communication
and were living in a condition of passivity and
marginality, without any opportunity to impact
their context. The response selected for them was
a small upward movement of the forehead skin
(see Fig. 18.7). The microswitch was an optic
Fig. 18.8 Representation a Webcam positioned on the sensor positioned above the participant’s left or
edge a person’s cap for monitoring the person’s smile right eyebrow in combination with a black mini
responses (upsurge/enlargement of the cheekbone) sticker. The sticker was fixed about 2 mm below
the optic sensor. The target response (i.e.,
upward movement of the forehead skin) acti-
vated the microswitch by bringing the sticker
under the optic sensor. This triggered a computer
system that ensured the participants’ access to
preferred stimuli. Both participants showed an
increase in responding, thus achieving extended
access to (control of) the stimuli with consequent
enrichment of their sensory input.

Fig. 18.9 Representation of a touch/pressure sensor

fixed into a person’s hand for monitoring hand-closure Microswitch-Aided Programs
responses
to Foster Assisted Ambulation

recorded when the size of or distances between Ambulation (walking) is a critical skill, whose
marks changed beyond a critical value. Results presence or absence can have widespread impli-
showed that the use of the camera-based micro- cations for the person’s practical and social life.
switches was effective with both participants who In fact, ambulation can be considered crucial for
had large increases in responding during the allowing the person opportunities to reach stim-
intervention periods (i.e., when their responses uli and persons that he or she may consider
allowed them to access preferred stimulation). attractive (reinforcing) and/or carry out activities
Lancioni et al. (2013d) conducted a study that could be instrumental for accessing relevant
with two adults, who had congenital sensory and social feedbacks. Obviously, the
268 G.E. Lancioni et al.

Fig. 18.10 Representation

of color dots drawn at a
person’s nose and lower lip to
allow a camera-based
microswitch to monitor mouth
responses

absence of ambulation would be considered a level of support ensured via the use of walker
serious obstacle toward the achievement of the devices, and the availability of preferred stimu-
aforementioned goals (Hayakawa & Kobayashi, lation contingent on the performance of ambu-
2011; Lancioni et al., 2009). Ambulation can lation steps (Lancioni et al., 2009, 2013g; Nolan,
also be used as a strategy by which a person Savalia, Yarossi, & Elovic, 2010; Van Gestel,
promotes his or her overall fitness and health Molenaers, Huenaerts, Seyler, & Desloovere,
condition (Cirignano, Du, & Morgan, 2010; Lee, 2008). A technology-based approach employed
Watson, Mulvaney, Tsai, & Lo, 2010; Lotan, for these persons combines the use of walker
Isakov, Kessel, & Merrick, 2004). devices with microswitches. The walker devices,
The acquisition and performance of walking which can be equipped with supporting features,
skills appear very natural and simple for typically serve to promote postural control and partial
developing persons (Cernak, Stevens, Price, & weight lifting (i.e., to guarantee the basic physi-
Shumway-Cook, 2008; Cherng, Liu, Lau, & cal conditions for the step responses involved in
Hong, 2007; Chia, Guelfi, & Licari, 2010; ambulation). The microswitches, which can be
Katz-Leurer, Rotem, Keren, & Meyer, 2010). For linked to the participant’s feet or walker device,
persons with severe/profound and multiple dis- serve to monitor his or her step responses and
abilities, independent and effective ambulation ensure via a related control/computer system the
may remain out of reach for multiple reasons. For automatic delivery of environmental stimulation
example, they may have poor balance and lim- contingent on those responses (Lancioni et al.,
ited motor skills and thus never achieve a phys- 2005c, 2007d). This stimulation would be
ical condition sufficiently mature for performing essential to motivate the participant to ambulate
adequate ambulation (Maher, Evans, Sprod, & (i.e., making the effort required for step perfor-
Bostok, 2011; Whittingham, Fahey, Rawicki, & mance) (Catania, 2012; Kazdin, 2001; Lancioni
Boyd, 2010). They may also have limited or no et al., 2007c, 2013b).
motivation to perform a demanding type of For example, Lancioni et al. (2005c) con-
response that does not produce any interesting or ducted a study with an adolescent considered to
reinforcing consequence for them. In fact, they function in the profound intellectual disability
may not be motivated by the discovery and range, who presented with blindness, spastic
manipulation of objects within their physical tetraparesis, and scoliosis. He could walk only if
environment nor find the reaching of and contact physically supported by a person or through a
with specific persons highly exciting (as typically walker device. With the walker, he tended to
developing children do). perform only few steps apparently because of a
For a number of these persons, ambulation motivation problem. Indeed, his ambulation was
may eventually be feasible only through some relatively costly in terms of efforts and did not
18 Assistive Technology 269

produce any positive/reinforcing consequences. impairment. They were used to a four-wheel

Given this situation, the use of a microswitch- walker supporting them around their chest and
aided program was considered essential to pro- under their arms and including a harness or
mote his ambulation performance. The program saddle to assist their postural control and lift part
relied on optic microswitches to monitor his step of their body weight. The microswitch-aided
responses and a control system that ensured the program involved the use of optic microswitches
occurrence of preferred stimulation (e.g., to monitor each foot’s steps (for four partici-
audio-recordings of brief music segments and pants) or a single optic microswitch to monitor
praise statements) contingent on their perfor- the right foot’s steps. In the first case, each step
mance. Data showed that during the intervention was followed by a brief stimulation (i.e., 3.5 s).
phases of the study (i.e., when the program was In the second case, the stimulation following step
applied), the participant’s mean frequency of responses performed with the right foot produced
steps per session more than doubled compared to longer (i.e., 8 s) stimulation periods, in line with
the baseline values (i.e., those available without conditions applied in previous studies. The
program). During the intervention phases, findings were consistent with those reported
moreover, the participant showed an increase in earlier.
indices of happiness (i.e., smiles or excited Lancioni et al. (2013g) carried out three
vocalizations). single-case studies using walker devices and
Lancioni et al. (2007d) conducted two studies microswitch technology to promote ambulation
to evaluate the effects of automatically delivered responses in two children and an adult with
stimulation for walker-assisted step responses multiple disabilities. The walker devices were
with two children and two adults with multiple equipped with support and weight lifting fea-
disabilities. In the first study, the two children tures. The microswitch technology ensured that
wore optic microswitches at their heels and could ambulation responses would allow the partici-
activate those microswitches through step pants to access brief stimulation events. The
responses. Each step (microswitch activation) ambulation responses of the first child consisted
produced a 2.5 s stimulation during the inter- of regular steps, while those of the second child
vention and post-intervention periods. In the consisted of pushing efforts. The child made
second study, the two adults wore a single optic those efforts (i.e., pushed himself forward with
microswitch at their right leg. Microswitch acti- both feet) while he was sitting on the walker’s
vation produced 5 or 6 s of stimulation during the saddle. The ambulation responses of the man
intervention phases. The results showed that both (third participant) consisted of regular steps
technical arrangements were effective. Indeed, all emitted at low frequency and interspersed or
four participants had significant increases in their combined with problem behavior, such as
assisted ambulation (i.e., frequencies of step shouting or slapping his face. The results of the
responses) and also in their indices of happiness study were satisfactory for all three participants.
during the intervention phases of the study. The children had a large increase in the number
Lancioni et al. (2010b) extended the use of of steps/pushes performed during the ambulation
microswitch-aided programs to promote ambu- periods set up for them and in the percentages of
lation to five new children whose level of func- those periods that they completed without any
tioning was reported to be in the severe or external help. The man improved his ambulation
profound intellectual disability range. All chil- performance while showing a decline in his
dren were affected by spastic tetraparesis, and problem behavior and an increase in his indices
four of them also presented with visual of happiness.
270 G.E. Lancioni et al.

Microswitch-Aided Programs an adaptive hand response (i.e., pushing on a

to Increase Adaptive Responses panel) and curb a problem behavior (i.e., face
and Curb Problem Behaviors hiding) in a woman with profound developmen-
or Postures tal disabilities. Initially, the woman was taught
the adaptive hand response. This allowed her to
The first goal of education and rehabilitation staff access brief periods of preferred stimulation.
working with persons with extensive intellectual Subsequently, her hand response led to preferred
and multiple disabilities is to promote adaptive stimulation only if it was performed in the
responding, that is, to enable those persons to absence of the problem behavior (i.e., free from
carry out positive/practical responses and use face hiding). The study also included a 3-month
those responses as means to control environ- post-intervention and generalization check, and a
mental stimulation and improve their general social validation assessment. Data showed that
condition (Lancioni et al., 2013a; Zucker, Perras, the woman (a) increased the frequency of her
Perner, & Murdick, 2013). The studies reviewed adaptive responses, (b) learned to perform these
above could be considered as attempts in that responses without the presence of the problem
direction. Another goal pursued with many of behavior, and (c) maintained and generalized
these persons is the reduction of problem the improved performance across different set-
behaviors (e.g., hand mouthing and eye poking) tings. A social validation assessment provided
or problem postures (e.g., head forward bend- highly positive rating for the improved perfor-
ing). Traditionally, intervention programs have mance and the technology used to achieve such
been set up to pursue the two objectives sepa- an outcome.
rately. More recently, efforts have been made to Lancioni et al. (2007f) used microswitch
deal with those two objectives within a single clusters for two children functioning in the pro-
intervention approach that uses clusters (combi- found intellectual disability range, and presenting
nations) of microswitches to simultaneously with motor impairment and limited residual
monitor both the adaptive responses and the vision or blindness. The adaptive response taught
problem behaviors/postures (Lancioni et al. to the two children consisted of manipulating
2007f, 2008b, 2013a, b, e). objects. The problem behavior to be reduced
For example, Lancioni et al. (2004) assessed consisted of hand or object mouthing. The
the use of a microswitch cluster to improve microswitches were wobble or vibration sensors
assisted ambulation, that is, to increase the fre- combined with optic sensors. Initially, the chil-
quency of steps performed and reduce inappro- dren were taught the adaptive response. They
priate posture (i.e., leaning on the walker’s table) received positive stimulation for each occurrence
in a man with multiple disabilities. The cluster of such response. Subsequently, the participants
included optic microswitches positioned at the received stimulation for the adaptive response
man’s heels to detect his steps and a pressure only if it occurred in the absence of the problem
microswitch under his right arm to detect his behavior. Moreover, the stimulation would be
body posture (i.e., whether he had an appropriate interrupted if the problem behavior appeared
upright posture or was inappropriately leaning on during its delivery. The results showed both
the walker’s table). The man received 2.5 s of children acquired high levels of adaptive
preferred stimulation at each step provided that responding and also displayed a drastic decline of
his posture was appropriate. Data showed that the the problem behavior. The effects of the inter-
man had an increase in his overall frequency of vention were maintained during post-intervention
steps as well as in his appropriate posture during checks underlining the participants’ ability to
walking throughout the intervention phases and remain active and display a distinct form of
the 3-month follow-up. self-control (Carter, Owens, Trainor, Sun, &
Lancioni et al. (2007g) investigated the pos- Swedeen, 2009; Carter et al., 2013; McDougall,
sibility of using a microswitch cluster to promote Evans, & Baldwin, 2010).
18 Assistive Technology 271

Lancioni et al. (2013e) carried out stimuli that it contains (i.e., want to obtain/reach
microswitch-cluster programs to promote object some of those stimuli and are unable to reach
manipulation (i.e., adaptive response) and reduce them on their own; Gevarter et al., 2013a, b;
inappropriate head or head–trunk forward lean- Kagohara et al., 2013). The second prerequisite
ing with a boy and a woman with multiple dis- concerns the skills needed for the use of the
abilities. The adaptive response was monitored device. In other words, persons can be expected
via optic, tilt, or vibration microswitches. The to use a device if they have the visual and motor
problem posture was monitored via optic and tilt skills necessary to do so without excessive effort
microswitches. During the initial intervention, and possibly without errors. The third prerequi-
the adaptive response was always followed by site for a successful use of SGDs is the avail-
preferred stimulation. During the subsequent ability of a communication partner (e.g., staff
intervention phases, the adaptive response led to member or parent) who can listen and respond to
preferred stimulation only if the inappropriate the communication messages/requests produced
posture was absent at the start of the response by the participants. Satisfaction of the partici-
and during the scheduled stimulation period. The pants’ communication efforts is essential to
results showed that both participants succeeded motivate them to strengthen their overall com-
in reaching large increases in adaptive respond- munication behavior and maintain and expand it
ing and eventually combining this achievement over time (Kagohara et al., 2013; Lancioni et al.,
with a drastic reduction in inappropriate posture. 2013b; Sigafoos et al., 2009, 2014a, b). In light
of the above, it seems obvious that the types of
SGDs adopted and levels of communication
Programs Based on the Use of SGDs pursued depend on the participants and their
to Promote Communication skills (Gevarter et al., 2013b; Mullennix & Stern,
(Requests) 2010). The four studies summarized in this sec-
tion provide a clear illustration of different SGDs
SGDs, also known as voice output communica- and different communication levels.
tion aids (VOCAs), are assistive technology Lancioni et al. (2011d) used a commercial
resources that can be used to enable persons SGD (Go Talk 9; Special Needs Products of
without functional speech to produce easily Random Acts Inc., USA) to help a woman with
understood verbal messages (i.e., requests and multiple disabilities to request various activities.
statements). In practice, the persons who would At each request, the woman was (a) provided
have most obvious benefits from the use of this material for the activity she wanted to carry out,
technology are those who do not possess effec- and (b) offered a choice between different mate-
tive communication within their context due to rial options. The SGD was a tablet-like tool with
(a) failure in developing any speech abilities or nine cells, only five of which were used during
production of totally/largely unintelligible speech the program (i.e., one for each of the activities
and (b) lack of functional nonverbal means of the participant was interested in requesting).
communication (Lancioni et al., 2011d, 2013b; Each of the five cells used contained the pictorial
Sigafoos et al., 2009, 2013, 2014a, b; Van der representation of one of the activities (e.g., lis-
Meer et al., 2012a, Van der Meer, Sutherland, tening to music/songs and watching videos). To
O’Reilly, Lancioni, & Sigafoos, 2012b). The request a specific activity (and make the SGD
availability of such technology can be seen as a produce the verbalization of the request mes-
way to allow the persons an effective form of sage), the woman produced a light pressure on
active communication (i.e., the opportunity to the cell with the representation of such an
make clear requests). activity. The woman was generally allowed to
The first prerequisite for a successful use of engage in the activity requested for about 2 min.
SGDs is that the persons for whom it is available Thereafter, she was to make a new request (i.e.,
have an interest in their environment and the for the same or a different activity) in order to
272 G.E. Lancioni et al.

continue her engagement. Results showed that resume their playing. Parallel to this communi-
during the intervention with the SGD, she was cation acquisition, the children got rid of
quite busy with an average of about eight behaviors such as hitting the person and reaching
requests per 20–25 min session. for the object, which were displayed at the
Van der Meer et al. (2012a) assessed the use removal of the toy during the baseline period.
of SGD technology and manual signs with four The new abilities were apparently maintained
children who were diagnosed with intellectual/ over time and generalized to other stimuli.
developmental disabilities and autism spectrum Lancioni et al. (2016) carried out a study to
disorder. The SGD used for the study was an assess a new SGD developed for people whose
Apple iPod Touch with Proloquo2Go software. multiple disabilities included blindness. Three
The intervention aimed to teach the children to adults were involved as participants. The side of
request for their preferred stimuli. The iPod was the SGD facing the participants measured 35 cm
set up to show three graphic symbols, which  20 cm and was divided into 15 sections/cells.
corresponded to snacks, play, and social inter- Each section contained an optic sensor, which
action. Touching any of those symbols activated was covered by a small object or tag with a word
a synthetic speech output matching the symbol in Braille referring to an activity. Removal of an
being touched. For each participant, only one of object/tag uncovered and activated the underly-
the symbols (i.e., the snack or play) was the ing optic sensor and caused the SGD to verbalize
target of the intervention, that is, represented the a request for the activity that the object/tag rep-
request for the stimuli available to him or her. resented. The caregiver would then respond to
The other two symbols were used as distractors. such request by ensuring the necessary condi-
Data showed that all children acquired the tions for the occurrence of the related activity.
appropriate use of the SGD while only three of During the baseline, the mean frequencies of
them acquired manual signs. Moreover, three of communication events per 60-min session were
the children were reported to prefer the SGD zero or close to zero. During the intervention
above the manual signs. phase, those events increased to between about
Sigafoos et al. (2013) carried out a study with six and 11 and led to a mean cumulative activity
two children, who were diagnosed with autism time per session exceeding 45 min for each of
spectrum disorder and presented with marked the participants. Moreover, each participant
developmental delays, showing inadequate indicated preference for entering sessions with
adaptive and communication behaviors. The the use of the SGD over alternative forms of
objective of their intervention was to enable the occupation.
two children to request the continuation of their
play with a specific (preferred) toy via an Apple
iPad device with Proloquo2Go software. The Programs Providing Orientation
iPad contained a single graphic symbol repre- Cues and Stimulation to Promote
senting the toy with which the children had Basic Activity or Assembly-Task
chosen to play within the session. The children Engagement and Mobility
were allowed 3–10 request trials/opportunities
per session. Each trial started with the experi- Promoting occupation in persons with multiple
menter gently removing the toy with which the disabilities is a crucial objective that poses seri-
child was playing. To get the toy back and thus ous challenges. In fact, many of these persons
continue to play with it, the child was to touch (a) may have limited activity skills that allow
the symbol of the toy on the iPad and thus, them to use only few, specific types of
trigger the request for such a toy. Following a material/objects and basic response schemes and
request, the experimenter delivered the toy back (b) may be unable to move from one simple
allowing play to resume. Both children were activity to the next due to their limited initiative
successful in learning to request for the toy and and/or the insecurity deriving from their
18 Assistive Technology 273

blindness or serious visual disabilities (Foley mean percentages of independent moves/travels

et al., 2013; Fox, Burke, & Fung, 2013; Lancioni from one work area to the next (i.e., from one
et al., 2008a, 2014a; Maes, Vos, & Penne, 2010; activity to the next) increased from zero or below
Sheppard & Unsworth, 2011). Given this situa- 20 during the baseline conditions (i.e., when the
tion and the relevance of ensuring independent program was not in use) to about 95 by the end of
and sustained engagement to these persons, the study (i.e., with the support of the programs).
recent research has emphasized two points. First, Lancioni et al. (2015) extended the evaluation
arranging small activities or activity steps (e.g., of the technology-aided programs just described
as required within an assembly-task sequence) at (Lancioni et al., 2014a) with two additional
different places may be more functional/practical studies involving participants with severe to
for helping the participants’ correct engagement profound intellectual disability and blindness or
than presenting those activities or steps at a sin- limited residual vision. In the first of the two
gle place (Frey, 2004; Lancioni et al., 2013c, studies, the program was similar to those
2014a). Second, technology may be crucial to described above (Lancioni et al., 2014a) and
(a) help the participants move/travel from one (a) provided auditory cues to guide three partic-
place to the next (i.e., from one activity or ipants to various work areas, at each of which a
activity step to the next) and (b) ensure that the simple occupational activity was to be per-
participants receive forms of reinforcing stimu- formed, and (b) ensured preferred stimulation
lation during their performance and thus maintain contingent on the arrival at each of the work
their motivation to continue for the time required areas. In the second study, the program (a) pro-
(Bellamy, Croot, Bush, Berry, & Smith, 2010; vided auditory cues or combinations of visual
Catania, 2012; Chantry & Dunford, 2010; Lan- and auditory cues to guide two participants to
cioni et al., 2013c, 2014a; Näslund & Gardelli, five different work areas where they could gather
2013; Uslan, Russell, & Weiner, 1988). different objects and transport and place each of
Recently, Lancioni et al. (2014a) carried out these objects into a container located at a sixth
two studies in line with the aforementioned work area, and (b) ensured preferred stimulation
points to assess technology-aided programs for at each of the work areas. The results of both
supporting activity engagement and mobility studies were largely positive with all participants
(indoor traveling) in persons with multiple dis- traveling from one area to the next independently
abilities. These persons were deemed unable to and dealing with the activities/objects properly.
move through sequences of activities on their Lancioni et al. (2014b) used a technology-
own, regardless of whether the activities were aided program similar to those mentioned above
arranged within a small space or at different for a more complex and practically relevant
places. In the first study, the two participants occupational objective. Specifically, they used it
with severe intellectual disability and blindness to teach three adult participants with deafness,
were provided with an automatic presentation of severe visual impairment, and reportedly pro-
(a) auditory cues aimed at guiding them to dif- found intellectual disabilities to carry out an
ferent work areas where small activities could be assembly task (i.e., to assemble five-component
carried out, and (b) musical and social (rein- water pipes). The program controlled the pre-
forcing) stimulation contingent on their arrival at sentation of (a) light cues to guide the partici-
each of the work areas. In the second study, a pants to the work areas containing the single pipe
participant with severe to profound intellectual components (in the right sequence) and to the
disability and moderate hearing impairment was large container where the completed pipes were
provided with (a) combinations of auditory and to be stored and (b) the stimulation available at
visual cues for guiding her to the work areas and each of the aforementioned places. The results
(b) positive social consequences contingent on were positive and all three participants showed
her arrival to those areas. The results of both independent and accurate engagement in pipe
studies were largely positive. The participants’ assembling performance.
274 G.E. Lancioni et al.

Programs Based on Technology complete the call. Both participants (a) were
Packages to Promote Contact/ successful in using the program and contacting
Communication with Distant relevant partners and (b) showed high indices of
Partners happiness (e.g., smiles) during the phone calls.
Lancioni et al. (2011c, 2014c) assessed a
As indicated in the previous sections of this slightly more sophisticated computer-aided tele-
chapter, persons with extensive multiple disabili- phone system than the one described above with
ties may find themselves in a condition of passivity three adult participants who presented with
and isolation and in need of support programs to blindness or severe visual impairment and motor
alleviate such condition (Bell & Clegg, 2012; or motor and intellectual disabilities but pos-
Blain-Moraes & Chau, 2012; Holburn et al., 2004; sessed speech abilities. For two of the partici-
Lancioni et al., 2008b; Lancioni, O’Reilly, Singh, pants, the computer presented the partners in
& Oliva, 2011c, d; Leung & Chau, 2010; Mech- groups (e.g., family members and friends). Once
ling, 2006; Memarian, Venetsanopoulos, & Chau, they had selected a group, the computer pre-
2011; Stainton & Clare, 2012; Taylor & Hodapp, sented the names of the partners included in that
2012). The programs might involve, among others, group so that one of them could be selected for
the use of (a) microswitches to access and control the call. For the third participant, the computer
environmental stimuli (Lancioni et al., 2013b), proceeded by presenting the names of the part-
(b) SGDs to make requests for attention, environ- ners available individually and also (b) provided
mental stimuli, and preferred activities, and reminders of the response needed to select a
(d) computer-aided telephone systems to establish partner for a call. Selection of a group and/or of a
telephone contact with socially relevant partners, partner occurred through activations of a micro-
such as family members and friends not directly switch (i.e., a pressure panel that could be trig-
present in the context where the persons are gered with a simple hand movement). Data
(Lancioni et al., 2011c). showed that all three participants learned to use
For example, Lancioni et al. (2013f) assessed the system very rapidly and were successful in
whether two participants (a girl and a woman) making phone calls independently.
with multiple disabilities (including intellectual
disabilities, minimal residual vision, and absence
of speech) (a) could make phone contacts with Considerations on the Different
relevant partners through a special telephone Types of Programs Reviewed
technology and (b) would enjoy their telephone- and Their Outcomes
mediated contacts. The technology involved a
net-book computer, a global system for mobile Microswitch-Aided Programs
communication modem, an optic microswitch,
and specific software. The computer was pro- !These types of programs have been described as
grammed to present the names of the partners means for helping participants with severe/
available for contact, and the participants could profound and multiple disabilities (a) acquire
choose a partner by activating their microswitch and strengthen small responses to connect with
(i.e., with lip or chin movements) after the pre- their immediate environment and thus access and
sentation of his or her name. Such response control environmental stimulation, (b) develop
triggered the computer to place a phone call to assisted-ambulation responses, and (c) increase
that partner. When the partner answered the call, adaptive responses and curb problem behaviors
the system provided the name of the participant or incorrect postures. The results of the studies
who was calling. From there on, the partner was reviewed in relation to each of the objectives just
expected to talk with (tell a story to) the partic- mentioned seemed to be very encouraging, thus
ipant who had placed the phone call. The partner emphasizing the positive impact of the programs
was allotted a specific time within which to and their potential for daily contexts.
18 Assistive Technology 275

A basic condition for the successful applica- if the stimulation following the former exceeds
tion of these programs is the availability of fea- (is more satisfactory than) the consequences of
sible adaptive responses and the use of reliable the problem behavior (Lancioni et al., 2006b,
microswitches. In order to be feasible, a response 2013a, b; Mitchell, 2012; Tullis et al., 2011). The
needs to be relatively easy to perform and/or not possibility of helping participants reduce prob-
excessively tiring for the participant. In view of lem behavior based on the aforementioned
this, one could argue that for many participants, choice amounts to helping them develop a clear
only fairly small or minimal responses might be form of self-control that frees them from outside
considered feasible. For step responses (i.e., restrictions and makes them look much more
supported ambulation) to be feasible, it is nec- responsible and mature (Lancioni et al., 2013e;
essary that the participant possesses a step McDougall et al., 2010; Singh et al., 2008a, b).
scheme and some strength in his or her lower The change from isolation and passivity or
limbs and/or that the support system to be used isolation and problem behavior to sustained
during ambulation is arranged in such a way so adaptive engagement with the environment and
as to lift part of his or her body weight (Lancioni reduction of the problem behavior can vastly
et al., 2010b, 2013g). Microswitches are reliable modify the social perception of the participant
when they can monitor a response with a high (i.e., the consideration the participant receives
level of accuracy, that is, without false positives within his or her context). Obviously, indepen-
or false negatives. With regard to this point, it dent engagement and absence of problem
may be noted that (a) conventional micro- behavior promote a more positive image of the
switches (e.g., pressure and tilt sensors) are not participant. In specific situations, such as those in
necessarily reliable or even applicable with small which the adaptive engagement concerns ambu-
or minimal responses and (b) great efforts have lation, the impact of the change can be relevant
been made during the last 10–15 years to not only in terms of social image but also with
develop new, experimental microswitches that regard to the participants’ physical fitness and
could be applicable with those responses (Lan- health condition (Lancioni et al., 2014a, b, 2015).
cioni et al., 2011a, 2013b, 2014d, e; Lui, Falk, & Evidence of the beneficial effects of the afore-
Chau, 2012). mentioned changes can be found in social vali-
The environmental stimulation that the par- dation studies in which social raters were
ticipants can access through their responses is employed to judge (a) the participants’ general
critical for the strengthening of those responses behavior during the program sessions and outside
and eventually for the success of a program of the sessions and (b) the possible impact (i.e.,
(Catania, 2012; Kazdin, 2001; Lancioni et al., benefits) of the program in the participants’ daily
2013b). The importance of this stimulation may context (Dillon & Carr, 2007; Lancioni et al.,
be even more obvious in programs aimed at 2005b, Lancioni, Singh, O’Reilly, Oliva, &
promoting adaptive responses and curbing Basili, 2005d, Lancioni et al., 2006a, 2007d,
problem behavior. In those programs, the par- 2013b).
ticipant is faced with the choice between One final consideration about microswitch-
(a) pursuing environmental stimulation through aided programs concerns their cost. It may be
performance of the adaptive response and worthwhile to underline that these programs can
restraint from the problem behavior and (b) con- generally be set up in a relatively inexpensive
tinuing with the problem behavior and accepting manner, thus are affordable within most school
to loose the environmental stimulation. Given and rehabilitation settings (Borg et al., 2011;
that the problem behavior is most likely main- Hubbard Winkler et al., 2010; Kagohara et al.,
tained by some form of automatic reinforcement 2013; Lui et al., 2012). In fact, single micro-
(Lancioni et al., 2007f, 2014e), one can expect switch devices usually cost less than 300 US
the participant to choose in favor of the adaptive dollars. To this cost, one should then add the cost
response and against the problem behavior only of a portable computer, interfaces, and basic
276 G.E. Lancioni et al.

software required for the complete program. programs (e.g., Van der Meer et al., 2012a, b;
While economically affordable, the long-term Lancioni et al., 2011d, 2016).
success of those programs may depend on tech- New research will need to investigate when
nology upgrading. Upgrading would require and how programs can proceed (a) from single
developing new forms of microswitches and new requests to multiple requests and (b) from
interfaces so as to facilitate the application and specific, relatively brief sessions to large sections
friendliness of the programs in general and also of the day. Answers to some of these issues may
make the programs suitable for extensively also depend on the improvement of the technol-
compromised persons who cannot (largely) ogy (i.e., the possibility of making it easily por-
benefit from current technology solutions. table) and the successful integration of the
technology within the main education/
rehabilitation plan available for the participants.
SGD-Aided Programs Until easily portable technology solutions are
available (so that the participant can have any
The literature has shown that the use of SGDs such solution with him- or herself regularly), one
can be highly useful in all those daily situations could envisage a context containing several
in which the participants (a) are unable to pro- SGDs. This arrangement would ensure that the
duce easily understood verbal or nonverbal participant has one of the devices almost always
messages (i.e., requests and statements) and visible, with the hope that this presence/visibility
(b) are interested in making requests/statements may foster his or her communication initiatives.
and accessing specific (message-related) environ- Systematic and repeated searches of motivating/
mental events or caregiver attention/mediation reinforcing environmental (social and nonsocial)
(Sigafoos et al., 2009, 2013, 2014a, b). One can stimuli may be necessary so as to increase the
envisage the importance of this technology in likelihood of including interesting request
multiple daily situations and over periods of time options also for those persons who seem mini-
and ranges of options that can vary quite exten- mally attracted by their environment (Davies,
sively. For example, one could use a relatively Chand, Yu, Martin, & Martin, 2013; Li, Bahn,
basic device for relatively basic communication Nam, & Lee, 2014).
in snack situations as well as in play or occu-
pational situations (Sigafoos et al., 2009, 2013,
2014a, b; Van der Meer et al., 2012a, b). One Technology-Aided Programs for Basic
could also use relatively complex devices for Activity or Assembly Tasks
rather extensive communication opportunities and Mobility
(i.e., including vast range of messages) over
relatively long periods of time (Lancioni et al., Programs aimed at helping persons with intel-
2016). Indeed, the studies reviewed above pro- lectual and multiple disabilities to be positively
vide a clear picture of the possible differences engaged in basic/occupational or vocational
among SGDs in terms of the number of messages activities and move freely to carry out those
included, in terms of the technology used and the activities would be considered relevant because
way the messages/requests are portrayed, and in they (a) provide all those persons an active
terms of the responses required to the participants role within their domestic and education/
for activating them. Obviously, the devices used, rehabilitation environment and (b) ensure that
the number of messages/requests contemplated the persons with the largest levels of sedentari-
within the devices, and the responses required to ness can practice mild physical exercise, with
activate those messages are to be adapted to the beneficial effects for their muscle tone and blood
characteristics of the participants involved in the circulation (Blick, Saad, Goreczny, Roman, &
18 Assistive Technology 277

Sorensen, 2015; Frey, 2004; Lancioni et al., The programs described are three possible
2014a). The studies reviewed indicate that dif- examples of successful strategies aimed at sup-
ferent types of activity engagement and different porting positive engagement in persons with
technology solutions may be envisaged to suit severe/profound and multiple disabilities. Other
the characteristics of the persons being served. examples might easily be envisaged for partici-
For example, for participants who can per- pants such as those involved in the studies
form simple, relatively repetitive types of activ- reviewed as well as participants who have higher
ities but fail to transit from an activity to the next, levels of functioning and higher activity skills.
one can set up a technology-aided program that Those programs could be based on the use of
guides and motivates them to do so through pictorial instructions (e.g., video prompts) for the
(a) auditory and/or visual cues as well as single steps of the tasks targeted and include
(b) positive stimulation contingent on their arri- occasional stimulation events to motivate the
val at (contact with) each new activity. For par- participants’ engagement and accuracy
ticipants who do not possess the ability/ (Cannella-Malone et al., 2011, Cannella-Malone,
consistency for performing the aforementioned Mizrachi, Sabielny, & Jimenez, 2013; Lancioni
types of activities but are capable of manipulat- et al., 2013b; Perilli et al., 2013a).
ing (e.g., taking, transporting, and putting away)
single objects, one can set up a technology-aided
program that guides them to (a) different areas Technology-Aided Programs
(i.e., one area at a time) where they can pick up for Contact or Communication
single, specific objects of a collection and (b) a with Distant Partners
final destination where the single objects are
placed together. This program also would rely on The first consideration one can make with regard
the use of auditory and/or visual cues to help the to the studies reviewed in this area is that par-
participants orient themselves and move suc- ticipants with multiple disabilities, with or with-
cessfully, and on the presentation of preferred out speech abilities, can be helped to establish
stimulation. This can be scheduled in relation to telephone contact with relevant partners not
the participants’ arrival at the different areas directly available within the participants’ context.
(and/or in relation to them taking the target The fact that the participants were able to use the
object) and in relation to them placing the object technology employed in the studies and to make
away at the final destination. For participants telephone contacts with relevant partners suc-
who have the ability to manipulate and put cessfully indicates that such technology and the
together (assemble) simple, two- or three- program set up with it were suitable to them. The
component objects, one can envisage the possi- combination of the computer’s presentation of
bility of developing assembly tasks that might the partners (i.e., by listing their names directly
have functional/vocational value. To that end, or by listing their groups first) and the avail-
one can set up a technology-aided program that ability of microswitches to choose among them
(a) guides the participants through a series of with a simple response proved adequate for all
work areas (i.e., including the single object participants.
components to be assembled and a final storing The verbal presentation of the partners’
place), (b) repeats this guidance process a num- names, which appeared effective for the partici-
ber of times so as to ensure that the participants pants involved in the studies reviewed, could be
assemble and put away a relevant number of supplemented with the presentation of the part-
objects, and (c) provides the participants feed- ners’ photographs for some participants. This
back and stimulation at each of the work areas could make their recognition of the partners
and, in particular, at the end of every round (i.e., faster and more accurate, thus improving their
after the completion/assembly of each object). choice and avoiding possible selection errors
278 G.E. Lancioni et al.

(Lancioni et al., 2013f, 2014c; Perilli et al., that they can be a valuable resource for a large
2013b). The program set up for nonverbal par- range of intervention situations, which can be
ticipants should always alert the partner regard- considered highly significant within education
ing the author of the call. In that case, the partner and rehabilitation plans for persons with
would know how to proceed with that severe/profound and multiple disabilities (Lan-
author/participant avoiding hesitation or possible cioni et al., 2013b). Those situations include,
errors (e.g., switching off the call because of no among others, any attempts to (a) strengthen
voice signal). In some of those situations, the adaptive responses and foster independent access
partner may simply greet the participant and to (control of) environmental stimuli, (b) develop
provide him or her with a number of positive supported ambulation (i.e., step responses), and
social remarks. In some other cases, the partner (c) increase adaptive responses and use them and
may tell a little, personal or participant-related, the stimulation available for them as a way to
story as a form of interaction that may be per- curb problem behaviors or incorrect postures
ceived as an emotionally reach event by the (i.e., via clear forms of self-control; Lancioni
participant and thus motivate new calls toward et al., 2013e; McDougall et al., 2010; Singh
that partner. The importance of using a simple/ et al., 2008a, b).
suitable response and a convenient microswitch SGD technology and SGD-aided programs
for choosing the partners can never be overem- can be viewed as critically relevant instruments
phasized (Lancioni et al., 2013b; Lui et al., 2012; to allow persons without any (or any effective)
Memarian et al., 2011). communication ability to reach a satisfactory
The implications of this type of intervention communication performance (i.e., make readily
program for the participants appear quite obvious understood requests/statements). Again, the
(i.e., in terms of participants’ initiative, social technology and related programs can vary widely
status, and happiness; see Lancioni et al., 2013f, to suit the characteristics of the participants. The
2014c). It is also reasonable to believe that literature has shown the possibility of using
the program is likely to produce changes/ technology/programs aimed at promoting basic
improvements in the social–emotional condition levels of communication as well as technology/
of the partners and eventually enrich the inter- programs aimed at allowing rather extensive
action between participants and partners (Hostyn ranges of messages and thus richer forms of
& Maes, 2009; Lancioni et al., 2013f). interaction extending over relatively long periods
of time. Given that improving communication
remains a central goal of any education and
Conclusion rehabilitation context, one may expect numerous
developments in this area both in terms of tech-
The studies reviewed, their outcomes, and the nology solutions and in terms of program
considerations formulated above can be taken to strategies.
suggest that assistive technology (or more Technology-aided programs for basic activity
appropriately, technology-aided programs) can or assembly tasks can be considered a highly
have an important role in helping people with valuable resource for professionals working with
severe/profound and multiple disabilities ambulatory individuals with different levels of
(a) reach positive performance objectives and functioning and different rehabilitation perspec-
(b) experience a sense of success and personal tives. Those programs can provide an opportu-
satisfaction (happiness) (i.e., in full accordance nity of simple activity engagement and mobility
with the main emphasis/aim of Positive Psy- (i.e., a combination of occupational engagement
chology; Pawelski, 2016a, b). Microswitch-aided and mild physical exercise) for lower functioning
programs have been widely used and data show individuals and an opportunity to develop a
18 Assistive Technology 279

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Author Biographies opmental disorders, design and evaluation of assistive tech-
Giulio E. Lancioni, Ph.D. is Professor in the Department of nology to support individuals with severe and profound
Neuroscience and Sense Organs, University of Bari, Italy. His multiple disabilities, and communication/social skills inter-
research interests include development and assessment of ventions for individuals with intellectual disabilities.
assistive technologies, evaluation of alternative communica- Jeff Sigafoos, Ph.D. is Professor in the School of Education,
tion, and training of social and occupational skills for persons Victoria University of Wellington, New Zealand. His research
with different levels of disabilities due to congenital interests include communication and occupation programs for
encephalopathy, neurodegenerative diseases, or acquired individuals with developmental and physical disabilities,
brain injury. educational programming for children with autism spectrum
Nirbhay N. Singh, Ph.D., BCBA-D is Clinical Professor of disorders, and the assessment and treatment of problem
Psychiatry and Health Behavior at the Medical College of behavior in individuals with developmental and physical
Georgia, Augusta University, Augusta, GA and CEO of disabilities.
MacTavish Behavioral Health, in Raleigh, NC. His interests Francesca Campodonico, BA is Research Assistant at the
include mindfulness, behavioral and psychopharmacological Lega F. D’Oro Research Center, Osimo, Italy. Her research
treatments of individuals with diverse abilities, assistive interests include assessment of assistive technologies, alter-
technology, and mental health delivery systems. He is the native communication strategies, and activity instruction
Editor-in-Chief of three journals: Journal of Child and Family methods for persons with severe, profound and multiple dis-
Studies, Mindfulness, and Advances in Neurodevelopmental abilities due to congenital encephalopathy, neurodegenerative
Disorders, and Editor of three book series: Mindfulness in diseases, or acquired brain injury.
Behavioral Health, Evidence-based Practice in Behavioral Gloria Alberti, MA is Research Coordinator at the Lega F.
Health, and Children and Families. D’Oro Research Center, Osimo, Italy. Her research interests
Mark O’Reilly, Ph.D. holds the Mollie Villeret Davis Pro- include assessment of assistive technologies, alternative
fessorship in Learning Disabilities and is Professor of Special communication strategies, and activity instruction methods
Education in the Department of Special Education at the for persons with severe, profound and multiple disabilities
University of Texas at Austin. His research interests include due to congenital encephalopathy, neurodegenerative dis-
assessment and treatment of severe challenging behavior in eases, or acquired brain injury.
 Intrinsic Motivation
19
Karrie A. Shogren, Jessica Toste, Stephanie Mahal
and Michael L. Wehmeyer

port for Deci’s original belief that intrinsic

Intrinsic Motivation
motivation supports human learning and that
external rewards actually serve as a threat to
The field of motivational psychology is framed
individuals’ intrinsic interest. The study of
around two central constructs: intrinsic motiva-
motivational processes has evolved from several
tion (the individual’s desire to perform the task
research traditions and, as such, an array of
for its own sake) and extrinsic motivation (con-
theory-driven constructs has been investigated.
tingent rewards). In a seminal experiment of
Although motivational constructs may differ
motivation (Deci, 1972), college students were
slightly in definition, they are all framed around
asked to work through a series of complex puz-
the central premise that intrinsic motivation results
zles either with or without pay. While it initially
in increased engagement and achievement (Schutz
appeared that those who received an extrinsic
& Pekrun, 2007). Built on the assumption that
motivator dedicated more time to the puzzles,
people are actively involved in their own devel-
their commitment to the task waned. Those in the
opment with tendencies toward growth and mas-
no-reward condition played with the puzzle sig-
tery (Deci & Ryan, 1985, 2000, 2008; Ryan &
nificantly more in a later unrewarded “free-time”
Deci, 2000), Self-Determination Theory (SDT) is
period than paid subjects, and also reported a
a widely recognized theory of human motivation.
greater interest in the task. This experiment has
In the following section, we will discuss SDT as a
since been replicated many times with different
motivational framework that aligns with work in
tasks and populations, garnering increased sup-
self-determination in the field of intellectual and
developmental disabilities (see Chap. 5).
Research in intellectual and developmental
disabilities is not devoid of a focus on motiva-
tion, of course. Indeed, there has been a consid-
K.A. Shogren (&)
S. Mahal
M.L. Wehmeyer erable amount of research focused on motivation
University of Kansas, 1200 Sunnyside Ave., Rm systems in intellectual and developmental dis-
3136, Lawrence, KS 66045, USA
abilities over the years (Switzky, Hickson,
e-mail: [email protected]
Schalock, & Wehmeyer, 2003). A significant
S. Mahal
proportion of this research, however, has focused
e-mail: [email protected]
on problems in motivation, motivation deficits,
M.L. Wehmeyer
or the linkages between poor performance and
e-mail: [email protected]
motivation among people with intellectual dis-
J. Toste
ability. Our intent in this chapter is not to provide
University of Texas at Austin, 1 University Station,
D5300, Austin, TX 78712, USA a comprehensive overview of the study of
e-mail: [email protected] motivation among people with intellectual

© Springer International Publishing AG 2017 285

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_19
286 K.A. Shogren et al.

disability, but instead to focus on the application Basic Psychological Needs

of one theory of intrinsic motivation,
Self-Determination Theory, which is featured As mentioned previously, SDT posits that
prominently in positive psychology. humans have three basic psychological needs,
and that humans actively seek to meet these basic
needs through engagement with their environ-
Self-determination Theory ment. The need for autonomy describes the drive
people have to be able to make choices and act
SDT attempts to explain how to support effective volitionally. The need for competence describes
and healthy behavior through an understanding the desire people have to feel that they can
of human’s basic psychological needs. As Deci master their environments and feel effective in
wrote in an early text, The Psychology of Self- their environments. The need for relatedness has
Determination (1980): to do with feeling connected to others, and
People have considerable capacity for feeling that you will be cared for and will have
self-determination, and the operation of will—that the chance to care for others (Deci & Ryan,
capacity to choose behaviors based on inner 2012). Self-Determination Theory suggests that
desires and perceptions—is the basis of people are driven to address their need for
self-determination (p. 5).
autonomy, relatedness, and competence, and
Since this and other early writings explicating engage in actions to attempt to address these
SDT (Deci & Ryan, 1980, 1985), SDT has needs. Environments that are supportive of the
received attention in the field of motivational attainment of these needs enable people to
psychology and has been recognized within become energized about engaging in actions for
positive psychology since the inception of the their own sake to meet their needs (Vansteenkiste
field (Ryan & Deci, 2000). Central to SDT is the & Ryan, 2013). In such environments, people are
belief that humans are active organisms who are intrinsically or autonomously motivated and are
proactive and growth oriented (Deci & Ryan, acting volitionally to address their needs. As
2012). SDT theorists believe that humans have Deci, Vallerand, Pelletier, and Ryan (1991)
the capacity to integrate their internal states with wrote, “social contexts that support people’s
the social and environmental circumstances they being competent, related, autonomous will pro-
encounter. SDT, in this way, differs from mote intentional (i.e., motivated) action, and
behavioral theories or social learning theories, furthermore, that support for autonomy in par-
which focus to a greater degree on how people ticular will facilitate that motivated action’s
are shaped by their environments (Deci & Ryan, being self-determined (rather than controlled)”
2012). (pp. 332–333). However, under other circum-
SDT posits that humans are motivated by stances, where behavior is directed and con-
three basic psychological needs that shape their trolled by others or external circumstances,
growth-striving actions. These basic psycholog- people are less autonomously motivated.
ical needs are the need for autonomy, compe- Self-Determination Theory acknowledges, how-
tence, and relatedness, and are described in ever, that there will be circumstances under
greater detail in subsequent sections. SDT also which extrinsic factors motivate behavior, but
explicitly integrates the role of the environment that people can also grow in the degree to which
in supporting or hindering these needs being met. they self-regulate extrinsic motivation, recog-
Environments that support these needs enable the nizing the relationship between acting volition-
development of autonomous motivation, and the ally in the context of external demands. Thus, the
self-regulation of extrinsic motivation, which is ultimate goal of SDT is to enable people,
central to being self-determined. including people with disabilities, to act in a
19 Intrinsic Motivation 287

self-determining way that promotes autonomous Self-determination Theory

motivation and self-regulation of extrinsic and Education
motivation.
Early research established the impact of
autonomy-supportive educational environments
Applications of Self-determination and teaching practices on student motivation and
Theory outcomes. For example Deci, Schwartz, Shein-
man, and Ryan (1981) found that autonomy-
Given the central role of motivation, and supportive teachers, who created a learning
environments that support autonomous moti- environment that enabled students to make
vation by enabling basic psychological needs choices and act volitionally, were associated with
for competence, relatedness, and autonomy to students reporting higher levels of intrinsic
be met, research and applications of SDT have motivation, perceived competence, and
focused on exploring applications of SDT to self-esteem. Other research has also linked
the creation of environments that promote autonomy-supportive teachers with enhanced
autonomy (i.e., autonomy-supportive environ- student self-regulation, learning and achieve-
ments) and address the need for competence ment, and engagement (Vansteenkiste et al.,
and relatedness. By creating autonomy- 2012).
supportive environments, the assumption is Vansteenkiste emphasized that autonomy-
that intrinsic motivation will be enhanced, supportive teachers support students to focus on
promoting valued outcomes across multiple life deep conceptual learning, rather than extrinsic
domains. In a meta-analysis of research on goals associated with external indicators of suc-
intrinsic motivation and its impact on outcomes cess. Researchers have found when students
across domains, Deci, Koestner, and Ryan understand the reasons they are learning, what
(1999) looked at the impact of extrinsic they are learning, and are driven by the pursuit of
rewards on motivation. They found that, gen- an outcome that aligns with their need for
erally, tangible rewards and contingent rewards autonomy, competence, and relatedness, students
alone, restricted intrinsic motivation, likely more actively process information and show
because they were controlled by others and did greater conceptual learning, compared to condi-
not support internal needs being met. They tions where behavior was managed through
found that positive feedback, when delivered in extrinsic rewards, such as grades and teacher
an autonomy-supportive way, enhanced intrin- evaluations (Grolnick & Ryan, 1987).
sic motivation, but if the feedback was Researchers have suggested similar impacts on
controlling, it decreased intrinsic motivation. motivation associated with autonomy-supportive
These findings suggest the importance of sup- parenting practices (Grolnick, 2009; Grolnick &
porting people with and without disabilities to Ryan, 1989; Katz, Kaplan, & Buzukashvily,
identify the reasons they are engaged in actions 2009; Mageau, Bureau, Ranger, Allen, & Soe-
in their environment, and linking those to the nens, 2015; Roth, Assor, Niemiec, Ryan, & Deci,
attainment of basic needs related to autonomy, 2009; van der Kaap-Deeder et al., 2015).
competence, and relatedness. This promotes Gottfried, Fleming, and Gottfried (2001)
self-driven actions and self-regulation of conducted one of the first studies of motivation
behavior and outcomes, while still promoting development focusing on the continuity of aca-
feelings of competence and relatedness when demic intrinsic motivation at five time points for
received positive feedback from others. Each students ages 9 through 17 years. Results indi-
of these elements enhances intrinsic motivation cated that academic motivation was a stable
across multiple domains. construct over time and, more interestingly, that
288 K.A. Shogren et al.

the mean levels of motivation declined with age. Jang, Carrell, Jeon, and Barch (2004) examined
This study used a generalized measure of aca- the impact of online training on the providing
demic motivation, the Children’s Academic autonomy-supports in the classroom, finding that
Intrinsic Motivation Inventory (CAIMI; Got- after the training, long-term teachers showed
tfried, 1986) that tapped students’ enjoyment of increases in their ability to teach and motivate
learning, orientation toward mastery, curiosity, their students in more autonomously supportive
persistence, and interest in subject-specific tasks. ways, which led to increased student engage-
This finding is consistent with other correlational ment. Researchers have also documented how
studies that have noted a marked decrease in such practices can be embedded across content
intrinsic motivation as students enter the areas, including science (Hagay & Baram‐Tsa-
upper-elementary grades and middle school bari, 2015).
(Gottfried, 1985; Guthrie, Wigfield, & Von- Strategies to enhance autonomous motivation
Secker, 2000), which may occur given the have been embedded in academic interventions
changing nature and demands of school tasks as for struggling learners. For example, Toland and
students get older. Boyle (2008) sought to change the ways that
A small body of research has examined children explained their lack of achievement to
autonomous motivation in students with disabil- themselves. Children identified as having low
ities, finding that students with disabilities tend to self-esteem participated in group sessions and
have lower autonomous motivation compared to were provided with modeling of positive think-
students without disabilities (Grolnick & Ryan, ing about learning. Findings indicated that stu-
1990) and that there are also differences based on dents in the intervention placed increased effort
disability label, with students with emotional on tasks, with associated improvement in the
disabilities reporting even lower autonomous areas of reading and spelling. Similarly, specific
motivation (Deci, Hodges, Pierson, & Tomas- instructional dialogue based in motivational the-
sone, 1992). However, it is acknowledged that ory has been embedded in daily practices in
students with disabilities have typically been Concept-Oriented Reading Instruction (CORI;
served in more controlling environments with Guthrie, McRae, & Klauda, 2007; Swan, 2003),
greater focus on external rewards. Researchers with resulting increases in students’ intrinsic
have therefore suggested the need for and motivation for reading. Berkeley, Mastropieri,
potential of autonomy-supportive classrooms to and Scruggs (2011) embedded a modeling and
enable greater intrinsic motivation and achieve- self-talk approach to attributional retraining in a
ment in students with disabilities (Deci & reading comprehension strategy intervention
Chandler, 1986). Reeve (2002) reviewed with adolescents with learning disabilities—also
research on autonomy-supportive teaching reporting an increased use of strategies by the
behaviors to provide guidance for characteristics participants. In recent work by Toste and col-
that could be used in school environments to leagues (Toste, Capin, Vaughn, Roberts, &
promote autonomous motivation, concluding that Kearns, 2016; Toste, Capin, Williams, &
autonomy-supportive teachers listen, avoid Vaughn, 2016), motivational training was
directives and criticism, provide answers less embedded within a word reading intervention for
often and instead encourage students to answer, upper-elementary students; students who
and motivate through student interest. Essen- received reading intervention alone and those
tially, in autonomy-supportive classrooms stu- with the additional motivational component
dents have meaningful roles, set goals, and are outperformed the control group on measures of
actively engaged in their learning, and this word reading. Further, students who received
influences engagement (Collie, Martin, Pap- motivational retraining also outperformed the
worth, & Ginns, 2016). It is promising to note control group on measures of sentence compre-
that teachers can learn to enhance supports for hension and reading attributions. These findings
autonomy provided in the classroom. Reeve, further support the assumption that when
19 Intrinsic Motivation 289

students achieve success counter to their expec- autonomy-supportive coaching in sports, physi-
tations, their beliefs about their potential may cal education, and physical activity interventions,
shift. This enhances students’ investment in generally finding that when coaches and teachers
academic tasks, thus promoting positive pro- create autonomy-supportive environments, ath-
cesses and academic success. letes are more internally motivated and perform
better (Amorose & Anderson-Butcher, 2007;
Gagné, Ryan, & Bargmann, 2003; Pelletier et al.,
Self-determination Theory and Health 1995, 2001; Reiboth, Duda, & Ntoumanis,
and Wellness 2004). For example, Curran, Hill, and Niemiec
(2013) found that when coaches used structural
In a recent meta-analysis of research on moti- supports such as providing expectations and
vation and health, Ng et al. (2012) reports similar promoting goal direction, athletes showed greater
findings as those reported in the education attainment of psychological needs and behavioral
domain. Specifically, when health and wellness satisfaction. Casey, Wang, and Boucher (2014)
contexts and professionals were autonomy- found that swimmers with Down syndrome who
supportive, patients reported greater attainment participated in community-based inclusive
of basic psychological needs as well as more swimming showed higher intrinsic motivation
positive health outcomes, including outcomes than extrinsic motivation, suggesting the impor-
related to healthy eating (Girelli, Hagger, Mallia, tance of community-based, autonomy-supportive
& Lucidi, 2016; McSpadden et al., 2016) and experiences for youth with disabilities (Powrie,
physical activity (Kinnafick, Thøgersen-Ntou- Kolehmainen, Turpin, Ziviani, & Copley, 2015).
mani, & Duda, 2016; Mack, Gunnell, Wilson, In another study, Mageau and Vallerand (2003)
& Wierts, 2016). Researchers have examined the report there are seven behaviors that define a
impact of autonomy-supports on people with coach as autonomously supportive: (a) provide
physical disabilities engaged in rehabilitation choice within specific rules and limits;
activities (Saebu, Sorensen, & Halvari, 2013), (b) provide a rationale for tasks and limits;
finding that during physical activities when (c) acknowledge the other person’s feeling and
supports for autonomy are provided, there were perspective; (d) provide athletes with opportuni-
increases in autonomous motivation and physical ties for initiative taking and independent work;
activity over the course of the intervention. (e) provide non-controlling competence feed-
Similar findings have also been established in back; (f) avoid controlling behaviors (e.g., overt
sport and physical activity more generally. For control, criticizing statements, tangible rewards
example, research on SDT and sport has shown for interesting tasks); and (g) prevent
athletes who are intrinsically motivated and ego-involvement in athletes. These behaviors
self-determined in their behaviors will exude suggest that an autonomously supportive coach is
more effort (Fortier & Grenier, 1999; Li, 1999; more complex than just offering choices:
Pelletier et al., 1995; Williams and Gill, 1995), Autonomy-supportive coaches provide choice, but
have higher levels of concentration (Boiche & also a rationale for requested tasks, rules and
Sarrazin, 2007; Brière et al., 1995; Calvo et al., limits, acknowledge athletes’ feelings and per-
spective, provide opportunities for initiative taking
2010; Holmberg & Sheridan, 2013; Pelletier and transmit non-controlling competence feedback
et al., 1995), are more persistent or avoid burnout [and] avoid controlling behaviors in the form of
(Fortier & Grenier, 1999; Pelletier et al., 2001, physical and psychological control, tangible
2003; Sarrazin et al., 2001) and perform better rewards, and ego-involvement induction (Mageau
& Villerand, 2003, p. 892).
(Beauchamp et al., 1996; Pelletier et al., 2003)
than athletes who rely on non-self-determined Bartholomew et al. (2009) present a taxonomy
types of motivation. For example, a large body of six controlling strategies employed by coaches
of research has examined the impact of to motivate their athletes. The authors
290 K.A. Shogren et al.

acknowledge that while these strategies may environments enable autonomous motivation,
induce short-term compliance or desired out- multiple positive outcomes result (Gagné, 2014).
comes; evidence suggests these strategies may be Gagné and Deci (2005) developed a framework
more damaging long term to an athlete’s psy- for understanding the role of autonomous moti-
chological well-being. The six controlling vation in work outcomes, suggesting that job
strategies include: (a) tangible rewards (e.g., a characteristics, supervisors and work leaders
coach who promises rewards to athletes for autonomy-support, and job feedback predicted
completing a task asked of them or uses the autonomous motivation and behavioral regula-
athlete’s scholarship as leverage to complete a tion of job activities. However, the framework
task); (b) controlling feedback (e.g., a coach only also suggests that a variety of contextual factors,
uses feedback to direct future behavior, opposed related to the work environment, can also influ-
to providing information for current perfor- ence outcomes. For example, researchers suggest
mance, only focuses on negative aspects of ath- that motivation as well as alignment of strengths
lete’s performance, and does not comment on the with work activities not only influences perfor-
positives); (c) excessive personal control (e.g., mance but also worker attitudes, including
authoritative demeanor and is unresponsive to engagement, well-being, and commitment
their athletes’ questions and ideas and commands (Guntert, 2015; Leroy, Anseel, Gardner, & Sels,
athletes to complete tasks through the use of 2015; Schultz, Ryan, Niemiec, Legate, & Wil-
orders and directives); (d) intimidation behaviors liams, 2015; Van Den Broeck, Lens, De Witte, &
(e.g., threat of punishment, embarrasses athletes Van Coillie, 2013). Researchers have also sug-
in front of team if they do not complete a task as gested the importance of building on character
desired, and directs derogatory comments at their strengths, as described in Chap. 13, in combi-
athletes); (e) promoting ego-involvement (e.g., nation with interventions to promote autonomous
evaluates athletes in front of one another, pro- motivation, particularly in the work context
motes an environment of competition between (Kong & Ho, 2016).
his or her athletes, and solely focuses on win-
ning); (f) conditional regard (e.g., a coach says
things to make athlete feel guilty or only focuses Self-determination Theory
on athlete when they are winning and does not and Intellectual and Developmental
interact when they are losing). These controlling Disabilities
strategies lack empirical research evidence within
sport (research supporting these strategies stem Chapter 5 detailed the research pertaining to
from parenting and educational contexts); how- self-determination and people with intellectual
ever, the goal of illuminating this ‘dark side’ of disability and provided a model linking intrinsic
coaching is for coaches to be self-reflective of the and autonomous motivation to the development
motivational strategies they employ with their of self-determination. While there is a substantial
athletes. Further, “over the long term, continued knowledge base with regard to the benefits of
exposure to controlling coach behaviors will promoting the causal agency of people with
thwart athletes’ psychological needs and, in turn, intellectual and developmental disabilities, there
contribute to the development of controlled has been only limited research on issues per-
motives” (Bartholomew et al., 2009, p. 229). taining to the satisfaction of basic needs and
autonomous motivation with this population.
What does exist tends to focus on motivation in
Self-determination Theory and Work engagement in sports. For example, as discussed
previously, Casey, Wang, and Boucher (2014)
Researchers have also begun to examine the used SDT as a frame to examine the motives
impact of autonomy-supportive environments on behind participation in swimming by people with
workers’ motivation, finding that when work intellectual disability. More autonomous
19 Intrinsic Motivation 291

motivation predicted engagement in swimming youth, and adults with intellectual and develop-
in both people with and without intellectual ment disabilities is more limited than research in
disability. the general population, there is no doubt that all
The limited research applying SDT to under- humans strive to meet basic psychological needs
standing (and promoting) intrinsic motivation of for autonomy, competence, and relatedness and
people with intellectual and developmental dis- that promoting intrinsic motivation requires
abilities does not, however, reflect the relative access to autonomy-supportive environments and
importance of such efforts. This has been well people in those environments. Given research
illustrated by research in the field of intellectual that suggests that people with intellectual and
disability documenting the phenomenon of ou- developmental disabilities have restricted
terdirectdness. Outerdirectedness is “the term opportunities to access autonomy-supportive
used to describe approaches in which individuals environments, particularly related to making
rely on external cues rather than on their internal choices and decisions and engaging in personally
cognitive abilities to solve a task or problem” valued goal-directed action (Stancliffe et al.,
(Bybee & Zigler, 1998, p. 435). It is, more 2011; Tichá et al., 2012), this suggests the critical
specifically, a “motivational style of problem need for increased attention on creating
solving in which the child uses external cues autonomy-supportive environments across the
rather than relying on his own cognitive resour- lifespan.
ces” (MacMillan & Cauffiel, 1977, p. 643). Structuring environments to be autonomy-
Research has established that children with supportive and supporting children, youth, and
intellectual disability exhibit outerdirectedness at adults across life domains in ways that promote
a greater rate than do typically developing chil- intrinsic motivation by promoting choice,
dren, likely due to multiple factors, including goal-directed behavior, a sense of mastery and
prompt dependency and overreliance, repeated connectedness, have the potential to enhance
experiences with failure, and task difficulty school and post-school outcomes and to foster
(Bybee & Zigler, 1998). This same body of greater well-being and engagement in work,
research documents that outerdirectedness results health, learning, and social activities. In addition
in the lack of initiation of action, reduced prob- to research in the general population in areas
lem solving efficacy, and poorer school perfor- ranging from education to employment to health
mance (Bybee & Zigler, 1998). Clearly, there is a and physical activity, a small but growing body
need to examine issues pertaining to intrinsic of research has documenting the role of intrinsic
motivation and its role in promoting motivation in the lives of people with disabilities.
self-determination and more positive outcomes This work has significant implications for con-
for people with intellectual and developmental sidering how to design and deliver systems of
disabilities. supports across life domains as described in
Chap. 3. Further, as described in Chap. 5 on
Self-Determination, by combining autonomy-
Conclusions supportive environments with autonomy-
supportive interventions that actively teach
Self-Determination Theory provides a compre- people with and without intellectual disability the
hensive theory to understanding the role of skills associated with self-determined action,
autonomous or intrinsic motivation in shaping including goal setting, problem solving,
the outcomes experienced by all people, includ- decision-making, and self-advocacy skills this
ing people with intellectual and development can enable the attainment of valued outcomes
disabilities. Although the research with children, across the lifespan.
292 K.A. Shogren et al.

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Author Biographies extensively in the intellectual and developmental disabilities

Karrie A. Shogren, Ph.D. is a Professor of Special Educa- field, and her research focuses on assessment and intervention
tion, Senior Scientist at the Life Span Institute, and Director in self-determination and positive psychology, and the
of the Kansas University Center on Developmental Disabili- application of the supports model across the lifespan. She is
ties at the University of Kansas. Dr. Shogren has published co-Editor of Remedial and Special Education and Inclusion.
19 Intrinsic Motivation 295

Jessica Toste, Ph.D. is an Assistant Professor in the also the Associate Director, Academic and Career Counselor
Department of Special Education at The University of Texas and Learning Specialist for football at the University of
at Austin and a Fellow of the Reading Institute within The Kansas Student-Athlete Support Services center.
Meadows Center for Preventing Educational Risk. Dr. Toste Michael L. Wehmeyer, Ph.D. is the Ross and Mariana
has published in the field of learning disabilities, and her Beach Distinguished Professor of Special Education and
research interests are related to effective reading interventions, Senior Scientist and Director, Beach Center on Disability, at
with a particular focus on motivation as a determinant of the University of Kansas. Dr. Wehmeyer’s research focuses
school success. She was trained in reading intervention on self-determination, understanding and conceptualizing
research as a postdoctoral fellow at Vanderbilt University and disability, the application of positive psychology to disability,
as a Fulbright scholar/visiting researcher at the Florida Center conceptualizing and measuring supports and support needs,
for Reading Research. and applied cognitive technologies. He is the co-editor of
Stephanie A. Mahal, MA is a doctoral student at the American Association on Intellectual and Developmental
University of Kansas with research interests in Disabilities ejournal, Inclusion.
student-athletes with disabilities in higher education. She is
 Teaching Community Living Skills
to People with Intellectual 20
and Developmental Disabilities

Raymond G. Miltenberger, Heather Zerger,

Marissa Novotny and Rocky Haynes

2013; Lumley & Miltenberger, 1997; Mechling

Introduction
& O’Brien, 2010; Miltenberger & Shayne, 2011;
Page, Iwata, & Neef, 1976; Scott, Collins,
Adults diagnosed with intellectual or develop-
Knight, & Kleinert, 2013; Sigafoos et al., 2005).
mental disabilities often lack the types of skills
Behavioral deficits in community living skills
that are necessary for living independently in the
have been addressed through a variety of training
community. Community living skills are of
methods to increase the overall independence of
major importance given that they promote inde-
people with disabilities. The purpose of this
pendence and contribute to an individual’s
chapter is to discuss the training methods that
overall quality of life. For example, some indi-
have been used to teach a variety of community
viduals diagnosed with an intellectual or devel-
living skills to adults with intellectual or devel-
opmental disability may have not developed the
opmental disabilities. This chapter will review
skills to use public transportation independently,
prompting, computer simulation, behavioral
therefore limiting the destinations to which they
skills training (BST), simulated environments,
could travel (e.g., place of employment, the
video modeling, video prompting, and picture
grocery store, the mall, and doctor’s appoint-
prompting strategies.
ments) or may not have developed independent
living skills, thus limiting their residential
options. Community living skills are any
behaviors that contribute to independence in the
Procedures for Teaching Community
community and include such skills as shopping,
Living Skills
meal preparation, and cooking, restaurant use,
Community living skills, like any functional
apartment upkeep, personal hygiene, laundry
skills, consist of chains of behavior
skills, public transportation use and pedestrian
(stimulus-response chains) that occur in the
skills, leisure skills, use of technology, job skills,
proper context (in the presence of the relevant
money management and ATM use, and a variety
discriminative stimulus or SD). Before imple-
of personal safety skills (e.g., Goh & Bambara,
menting behavioral procedures to teach these
skills, the behavioral chains must be task ana-
lyzed into the individual stimulus-response
components. The steps in the task analysis
R.G. Miltenberger (&)
H. Zerger
M. Novotny
occur in sequence and each response results in
R. Haynes the SD for the next response in the chain (see
Department of Child and Family Studies, University Table 20.1 for an example of a task analysis).
of South Florida, MHC2113A, 13301 Bruce B.
Downs Blvd., Tampa, FL 33612, USA Once the behavioral chain is task analyzed, the
e-mail: [email protected] trainer can assess the steps in the task analysis

© Springer International Publishing AG 2017 297

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_20
298 R.G. Miltenberger et al.

Table 20.1 Task analysis for washing clothes in a top-loading washing machine (from Horn et al., 2008)
Step SD Target behavior
1 Standing in front of washer with basket of clothes Turn dial to setting for regular wash
2 Dial set for regular wash Pull dial to start running water
3 Water running Open washer door
4 Washer door open Take detergent off the shelf
5 Detergent in hand Take cap off detergent
6 Cap off detergent Pour detergent into cap
7 Detergent in cap Pour cap-full of detergent into water
8 Detergent cap empty Put cap back on detergent
9 Cap on detergent Put detergent on shelf
10 Water running, detergent in washer Put clothes in washer
11 Clothes in washer Close washer door

before and after training to measure the effec- a model to evoke the correct response, and
tiveness of training. Training can then consist of physical prompts in which the trainer physically
one of two approaches; a chaining procedure guides the learner through the correct response
(forward or backward chaining) in which each often using hand over hand guidance (i.e., the
step in the task analysis is trained separately and most intrusive prompt). Other prompts, known as
chained together or total task presentation in stimulus prompts, involve the change in or
which the entire chain of behaviors is prompted addition or removal of a stimulus to make a
and reinforced in each learning trial. behavior more likely to occur and do not involve
the behavior of other individuals. Research has
focused on the use of response prompts to pro-
Prompting mote community living skills in adults with
developmental disabilities.
Prompting is a procedure that uses the presenta- Dollar, Fredrick, Alberto, and Luke (2012)
tion of stimuli before a behavior to make it more used simultaneous prompting, in which verbal
likely that a particular behavior will occur at the prompts and model prompts were provided
correct time and contact reinforcement (e.g., together, to teach independent living skills and
prompting evokes a response in the presence of leisure skills to three adults diagnosed with sev-
the SD so it can be reinforced, Miltenberger, ere intellectual disabilities. The skills included
2016). Once the prompts consistently evoke the using an iPod, a CD player, and a DVD player,
correct behavior in the presence of the SD, the folding t-shirts and underwear, and hanging
prompts are faded (gradually eliminated over pants. Using a total task presentation training
trials) so the behavior continues to occur in the approach (i.e., the trainer uses prompts to evoke
presence of the SD with no further assistance. the entire chain of behaviors in each learning
Response prompts involve the behavior another trial), the trainer provided praise after each cor-
person to get the desired behavior to occur. They rect response. Additionally, when the chain of
include verbal prompts in which the trainer emits behaviors was completed, a natural or tangible
a verbal response to evoke the correct response reinforcer was delivered. The prompting proce-
(i.e., the least intrusive prompt), gestural prompts dures increased the number of correct steps
in which the trainer engages in some movement completed for each participant.
to evoke the correct response, model prompts in Batu, Ergenekon, Erbas, and Amanoglu (2004)
which the trainer executes the target behavior as examined the effectiveness of a most-to-least
20 Teaching Community Living Skills to People with Intellectual … 299

prompting strategy to teach a variety of pedestrian necessary. The combination of the two strategies
skills to five adolescent males diagnosed with increased correct responding involved in these
developmental disabilities. Most-to-least prompt- leisure activities. Additionally, no reinforcers
ing consists of the use of most restrictive were provided for the completing of individual
prompting strategies (physical prompts) that are responses or the overall activity, indicating that
faded to least restrictive (verbal prompts) as the antecedent strategies can be successful in
learner successfully engages in the correct increasing a variety of skills. It is likely that the
behavior over trials. The participants were taught leisure skills targeted in this study were naturally
to cross the street using an overcrossing, cross the reinforcing so no external reinforcers were nec-
street using pedestrian lights, and cross the street in essary. In general, when teaching leisure skills it
the absence of traffic facilitators. Each skill was is important to choose skills that are reinforcing
presented in a total task presentation procedure to the participant and that the participant can
and the prompts were presented from most intru- access on a regular basis. In this way, the skills
sive to least intrusive. First, a verbal prompt plus a are most likely to maintain.
full physical prompt was provided, followed by a
verbal prompt plus a partial physical prompt, and
ending with a verbal prompt only. Each time the Computer Simulations
task was completed, praise and tangible rein-
forcers were provided. Presenting the prompts Computer simulations can be a cost-effective
using a most-to-least strategy increased correct training strategy that is particularly beneficial
pedestrian skills for each of the five participants. In when conducting training in the natural envi-
another study focusing on pedestrian skills, Har- ronment is not feasible. Computer simulations
riage, Blair, and Miltenberger (2016) used allow for cues to be presented in life-like simu-
behavioral skills training (instructions, modeling, lations with demonstrations of the appropriate
rehearsal, and feedback) to teach parents of behavior in response to the cues that mimic those
three adolescents with autism to implement found in the natural environment. Additionally,
most-to-least prompting procedures to teach unlike video modeling in which individuals
street-crossing skills to their children. The parents passively learn, computer simulations allow
conducted the procedures with fidelity and participants to engage with the simulated envi-
the pedestrian skills increased for all three ronment that mimics the natural environment,
adolescents. therefore facilitating active learning. Mechling,
Conversely, Chan, Lambdin, Van Laarhoven, Pridgin, and Cronin (2005) used computer-based
and Johnson (2013) taught leisure skills using a video instructions (CBVI) to teach three indi-
least-to-most prompting procedure in addition to viduals with intellectual disabilities how to
video prompting. In the least-to-most prompting respond to cashiers and engage in other pur-
strategy, the least intrusive prompt (i.e., verbal chasing skills while at fast food restaurants.
prompt) is used first and more intrusive prompts During CBVI, training videos of a model
(gestural and physical) are used only if the least engaging in different behaviors related to order-
intrusive prompts are not effective (they do not ing a meal at a fast food restaurant played on the
evoke the behavior). Painting skills, listening to computer. Throughout the training sessions, the
music, and taking pictures were taught to an video paused, and the computer prompted the
adult male diagnosed with Down syndrome and a participant to respond to questions related to
moderate intellectual disability. A video what the model should do next. Participant
prompting procedure was used to teach each responses included either engaging in a verbal
behavior involved in the skills. However, when response or touching a picture on the computer
the video prompt was unsuccessful in producing screen. During training, participants were ini-
the correct behavior, a verbal prompt was pro- tially prompted to engage in correct responding
vided followed by a physical prompt if with a 0 s delay. Once correct responding
300 R.G. Miltenberger et al.

occurred consistently, the delay increased to 3 s. tablets to increase workplace skills for four males
This prompt delay procedure is used to transfer diagnosed with autism. A video was developed
stimulus control from the prompt to the natural to depict a model engaging in correct responding
SD. The prompt initially evokes the correct related to a shipping task. During intervention
response, but across training trials, the participant participants were given a tablet that contained the
begins to make the correct response in the pres- video model. Participants were taught how to
ence of the SD before the prompt is delivered start, pause, and fast-forward the video. They
(Miltenberger, 2016). Prompts included the trai- were then instructed to do the best they could at
ner instructing the participant what to say, or the shipping task. As a prompt to complete the
gesturing to the correct picture to push. Follow- task correctly, the participants were allowed to
ing training, generalization probes were con- watch the video as they completed the task. Task
ducted at fast food restaurants within the completion substantially increased from baseline
participants’ natural environment. All three par- to intervention when video modeling and
ticipants engaged in 100% correct responding prompting were provided.
through CBVI, and all three participants engaged McMahon, Cihak, Gibbons, Fussell, and
in at least 80% correct responding during gen- Mathison (2013) taught seven adults with intel-
eralization probes. lectual disabilities to use a mobile application to
Mechling and Ortega-Hurndon (2007) used identify whether food items contained specific
similar procedures to teach three adults allergens. Participants were given scenarios in
multiple-step job tasks. During CBVI, partici- which a person had a specific food allergy and
pants were shown three pictures of steps in the were asked if that person could eat a particular
tasks to complete, and the participants were food item. During baseline, participants were
required to touch the subsequent step. When given a list of food allergies and the food pack-
participants engaged in the correct response, a aging. They were required to answer “yes” or
video segment displaying the correct perfor- “no” for eight scenarios regarding whether the
mance of the task was shown to the participants. person could eat the provided food item. During
Following the training procedure, generalization intervention participants were taught to use a
probes were conducted at each participant’s job mobile application that scanned a food item
site. After training, correct responding increased barcode and listed whether the item had common
to over 90% for all three participants, and the allergens. Participants were again given a list of
skills generalized to their job sites. Mechling also scenarios and asked whether the person was able
used computer-based video instructions to teach to eat the food item; however, they were allowed
bus-riding skills to three young adults with mild to use the mobile application to help them
or moderate intellectual disability (Mechling & determine whether the item contained the specific
O’Brien, 2010). During CBVI participants wat- allergen. During baseline the number of prob-
ched a video of a model entering a bus, using a lems solved correctly ranged from two to six.
pass, and sitting down. They were then instructed Once participants were given the mobile appli-
to press the “request to stop button” when they cation, correct responding increased to at least
saw a target landmark. All three participants seven correct responses with most sessions
engaged in the correct response of pressing the including participants responding correctly to all
“request to stop button” through CBVI alone, eight questions. In a return to baseline when
and responses generalized to in vivo probes in participants were no longer allowed to use the
which they rode a real bus to the target location. application, their correct responding decreased to
With handheld technology being readily baseline levels.
available to individuals, CBVI programming has With rapid advances in technology and the
been adapted so that it can be used on tablets and development of a large variety of applications for
mobile phones. Burke, Allen, Howard, Downey, handheld devices, it is likely that researchers will
and Bowen (2013) used video modeling on continue to evaluate applications that can
20 Teaching Community Living Skills to People with Intellectual … 301

promote the successful use of community living Neef, Iwata, and Page (1978) conducted a
skills by people with disabilities (e.g., Kagohara similar study in which they taught adults with
et al., 2013). intellectual disabilities public transportations
skills. They conducted simulation training using
the same cardboard model of city streets (Page
Simulation and Behavioral Skills et al., 1976) and a life-size simulated bus created
Training with cardboard in the classroom. The participants
manipulated a doll to engage in the correct
Teaching skills through computer simulations behavior in the simulated city streets and
can be expensive if it requires the school or rehearsed actual bus-riding behaviors in the
agency to purchase the necessary equipment and model of the bus. The researchers also included
software to conduct training. In addition, if slides that showed instances in which partici-
computer simulations are not already prepared pants should and should not respond (e.g., board
for training situations, time and expertise is the bus when the correct bus is shown, do not
required to prepare videos. Therefore, for some board when the incorrect bus is shown). Partici-
agencies or schools, it may not be possible to use pants were taught how to approach and board the
computer simulations. When time, technical bus, sit while riding the bus, and pull the cord
expertise, or money constraints negate the use of indicating they would like the bus to stop at the
such training methods, non-technological simu- correct time. The training procedure consisted of
lations may be beneficial. praise for correct performance and modeling
Page et al. (1976) evaluated simulation train- prompts to evoke correct performance both in the
ing to teach pedestrian skills to adolescents with tabletop simulation and life-size simulation.
disabilities. They developed a cardboard layout After training with a cardboard bus, participants
simulating four square city blocks, to teach were shown the slides of different instances in
pedestrian safety skills. They also developed a which they should and should not respond and
model pedestrian light that showed “Walk and were instructed to answer questions about how
Don’t Walk,” and a model traffic light that could they should respond in each situation. Assess-
be placed at different intersections within the ments were conducted within the natural envi-
simulated city. Participants included five ado- ronment to see whether skills taught within the
lescent males diagnosed with intellectual dis- classroom would generalize. Results indicated
abilities who were taught to engage in correct that correct responding increased for all partici-
pedestrian skills by maneuvering a doll through pants from 10 or fewer correct responses out of
the cardboard simulation. They were taught to the 21-item task analysis in baseline to either 20
cross the streets safely at intersections in a vari- or 21 correct responses (95–100% correct) in
ety of locations including two types of intersec- training. Correct responses also generalized to
tions with stop signs, intersections with the natural environment, including novel buses.
“Walk/Don’t Walk” lights, and intersections with Generalized restaurant skills have also been
tricolored traffic lights. Before and after training, taught to adults with intellectual disabilities using
assessments on the individual safety skills were classroom simulations (van den Pol et al., 1981).
conducted using the cardboard simulations and Skills were separated into four components:
within the natural environment at different locating, ordering, paying, and eating and exit-
intersections in the community. Results of Page ing. As in Neef et al. (1978), participants were
et al. demonstrated that for all participants correct required to respond correctly to a series of slides
responding increased from about an average of and practiced the skills within a simulated setting
four out of 17 task analysis steps in baseline, to with trainers acting as restaurant staff. Skills were
16 out of 17 steps during treatment, and assessed within the natural environment at two
responding maintained during follow-up sessions local fast food restaurants before and after
within the simulation and natural environment. training was conducted. Results of van den Pol
302 R.G. Miltenberger et al.

et al. (1981) demonstrated an increase in correct responding for all participants increased from
responding from less than 50% correct to nearly 45% correct responding in baseline to 90% cor-
100% correct for all participants, along with rect responding during intervention, which
increased generalization of skills to the natural maintained during a 20-week follow-up session.
environment. Results of these three studies Burke, Andersen, Bowen, Howard and Allen
demonstrate that community living skills can be (2010) used both BST and a performance cue
taught to people with intellectual disabilities with system (PCS) to teach vocation skills to six
low-tech simulations in the classroom. Although adults with autism. Participants were trained to
these skills are often taught in highly structured assist in the delivery of a fire safety education
simulated situations, research has demonstrated program, which consisted of 63 scripted behav-
that they can generalize to the natural setting and iors. The participants wore an inflatable fire-
maintain over time. fighter mascot costume while assisting the
A training approach that is used in simulation firefighters conducting the training. During BST,
training and in natural settings is behavioral skills participants were given a training script and
training (BST). BST consists of delivering shown a training video. Participants practiced
instructions and modeling correct responses, during a mock assembly and were given praise
providing opportunities for the individual to and corrective feedback on components they
rehearse the correct responses within a controlled performed incorrectly. If participants did not
environment, and providing feedback on which perform to criterion during BST, they were
skills the individual performed correctly and introduced to PCS, which consisted of cues
what skills needed improvement. Aeschleman appearing on an iPhone that participants wore
and Schladenhauffen (1984) used both mne- within the mascot head. One participant achieved
monic training and BST to teach grocery shop- criterion performance (80% correct) through
ping skills to people with disabilities. During the BST alone. The other two participants, however,
mnemonic training, participants were instructed required the PCS to reach criterion. Burke et al.
to draw symbols to represent items they needed also looked at acquisition of skills with PCS
to purchase at the store. In order to ensure that alone without BST for three adults diagnosed
each symbol would act as a cue, participants with autism. Two participants reached criterion
were instructed to match the symbols to the with only PCS, while one participant required
corresponding items. After mnemonic training, BST and PCS to reach criterion. This study
BST was used to teach a variety of skills needed provides a nice example of the value of BST to
for grocery shopping. The classroom was arran- teach the skills and the use of technology to cue
ged to simulate a grocery store, and sessions the skills in the natural environment if they do
started with the participants drawing the symbols not generalize.
for the food they needed to purchase. Research-
ers gave the participants money and a grocery
basket and instructed them to buy the items on Video Modeling
their shopping list. During subsequent training, if
the participant made an error during a step in The use of video modeling to teach community
previous sessions, the trainer stopped the partic- living skills has been shown to not only be
ipant at the step he or she missed and modeled effective at increasing the accuracy of skills
the correct response. If participants responded being taught, but also lead to generalization to
correctly in 19 out of 20 steps in two consecutive more natural environments. This technology has
training sessions, in vivo training was used in been used to teach a variety of community living
which sessions were conducted in the same skills such as job skills (Goh & Bambara, 2013),
grocery store from baseline. The same training laundry skills (Horn et al., 2008), meal prepara-
conducted in classroom sessions was imple- tion and cooking skills (Mechling & Collins,
mented during the in vivo sessions. Average 2012; Rehfeldt, Dahman, Young, Cherry, &
20 Teaching Community Living Skills to People with Intellectual … 303

Davis, 2003), and appropriate use of fire extin- Horn et al. (2008) evaluated the use of video
guishers (Mechling, Gas, & Gustafson, 2009). In modeling to teach adults with disabilities to use a
each of these studies, the researchers first video washing machine to wash a load of clothes.
recorded an actor performing the task from the Specifically, each participant was instructed to
perspective of the learner. This allowed the watch an entire video of a person following a
learner to see the skill being completed from the 10-step task analysis to wash clothes and was
perspective they would experience when com- then instructed to perform the task. When this
pleting the task. Individuals were required to approach was not successful, Horn et al. divided
review the entire video model before attempting the 10 step video into two 5-step segments of the
to complete the task. A variety of prompting video. This method required the participants to
methods were used in conjunction with video watch the first five steps before performing the
modeling, including constant time delay, verbal first half of the task and then to watch the second
prompts, task termination, and least-to-most five steps before completing the second half of
prompting. the task. Two participants reached mastery after
Goh and Bambara (2013) used video mod- this training. For the third participant, the
eling to teach adults with intellectual disabilities researchers faded from the 5-step segments to
to complete their job task without the need for single step segments (video prompting) and
prompts from supervisors. The researchers added a least-to-most prompting procedure.
video recorded the participants performing the Results demonstrated video modeling as an
task while receiving instruction from their job effective procedure for two of the three partici-
coach. Each participant was shown the video pants, with the third requiring video prompting
model during an instructional setting. After and physical prompting. These findings demon-
watching the video the participant was given a strate that different individuals may require dif-
choice to view the model again or practice the ferent modes or intensities of training to
task. Once the participant practiced the task successfully learn a community living skill.
during the instructional setting, the individual
was immediately taken to the work area to
perform the task. Three different phases were Video Prompting
conducted including video modeling alone,
video modeling plus feedback (i.e., praise), and Like video modeling, video prompting requires a
video modeling plus feedback and practice. For learner to view a video model of a targeted skill
the majority of skills, all participants required being completed. However, video prompting
video modeling plus feedback and practice to requires the learner to watch a video segment,
achieve mastery. pause the video and complete the step in the task
Video modeling has also been shown to be analysis shown in the video segment, restart the
effective without the use of corrective feedback. video, and repeat the process for all steps in the
Rehfeldt et al. (2003) found that individuals were task analysis. Video modeling involves watching
able to watch an entire 2.5-min model before the entire task being completed on video before
independently making a sandwich. If participants beginning to engage in the task. Video prompting
missed a step, the researcher did not provide has been used to teach a variety of community
feedback, but simply completed the step and had living skills including cooking (Sigafoos et al.,
the participant begin with the subsequent step in 2005), washing dishes (Sigafoos et al., 2007),
the chain. Similarly, Mechling et al. (2009) correct ATM/debit card use (Scott et al., 2013),
demonstrated that individuals could learn to and leisure activities (Chan et al., 2013).
appropriately use a fire extinguisher to put out a Laarhoven, Johnson, Laarhoven-Myers,
cooking fire by watching a video model. If any Grider, and Grider (2009) demonstrated the
steps were not completed correctly, participants effectiveness of video prompting when teaching
were required to re-watch the video. job skills to an individual with an intellectual
304 R.G. Miltenberger et al.

disability. The authors developed the video clips participants’ performances quickly decreased
by video recording the task being completed, after the removal of the video prompts. Third, the
taking a still shot of the most salient part of each researchers systematically chunked the video
step, and placing the picture at the beginning of clips together to create a full length video of the
each video clip. In addition, each step included a dish-washing task. Although the authors
voiceover narration. The video clips were loaded demonstrated the effectiveness of video prompt-
onto an iPod for the participant to use while ing, they failed to completely fade the video
completing the task. During training, the partic- prompts for all participants.
ipant was directed to watch the clip again on his In an effort to ascertain whether video model-
iPod for the first error (i.e., a missed step). The ing or video prompting is more effective at
second error resulted in the use of physical or teaching new skills, Cannella-Malone et al. (2006)
model prompts. The authors found video compared the two methods. Each participant was
prompting, video feedback, and prompting were taught to set a table using video modeling and put
effective at increasing the accuracy of job com- away groceries using video prompting. The results
pletion as well as job independence. In a similar showed that video prompting was more effective
study, Scott et al. (2013) uploaded video pod- than video modeling at teaching the new skill. The
casts to an iPod to teach correct ATM/debit card authors then used video prompting to teach table
use. The authors used a simulated ATM to pro- setting, which resulted in immediate acquisition of
duce all of the videos, which included audio the skill. These finding suggested video prompt-
narration (i.e., verbal cues). Unique to this study, ing was more effective than video modeling for
the authors elected to video record peers per- teaching new skills. However, video modeling has
forming the task used on the podcast. The results been demonstrated to be an effective approach in
of both studies demonstrated that video prompt- other studies (Goh & Bambara, 2013; Mechling &
ing was not only effective at teaching skills, but Collins, 2012; Rehfeldt et al., 2003) suggesting
generalization to real and novel ATMs could also that the choice of procedures should be tailored to
be achieved without direct training. In another the needs of the individual.
study, Chan et al. (2013) also demonstrated video
prompting was effective at teaching an individual
to engage in leisure activities. The researchers Audio Cues Within Video
first presented the participant with a video model.
If the participant did not respond within 5 s, a The videos created for video modeling and video
fixed 5 s time delay was used before using prompting procedures often make use of voice-
least-to-most prompting. It is important to note over instructions in which the narrator provides
that, although the participant was able to com- instructions to accompany the modeling or asks
plete the leisure activities, prompting continued the learner questions regarding the models
to be required. behavior. For example, Poche, Yoder and Mil-
Sigafoos et al. (2007) investigated whether tenberger (1988) created videos showing abduc-
they could fade video prompting by systemati- tion prevention skills. In each scenario in the
cally chunking the video together to transition to video, an actor demonstrated the skills (say “no,”
a video modeling intervention. The goal of this run away, and tell an adult when presented with
study was to answer whether individuals could an abduction lure) as the voiceover described the
become completely independent at dish washing skills. In addition, after a few scenarios, subse-
after learning the skill through video prompting. quent scenarios involved pauses in which the
First, the researchers taught the participants to voiceover described the abduction lure shown in
complete the dish-washing steps with the use of the video and asked the viewer what the actor
video prompting. Second, the researchers evalu- should do next. In this way, the voiceover
ated whether participants could complete the task directed the viewer’s attention and provided an
without video prompting present. All three opportunity for active verbal responding while
20 Teaching Community Living Skills to People with Intellectual … 305

watching the scenarios. After the pause, the pictures as he or she completes each step in the
voiceover then stated the correct answer as task. Picture prompts have been shown to be
feedback for the learner’s verbal response (e.g., effective for the acquisition of a variety of skills
“If you said the boy should say ‘no,’ run away, for people with disabilities including ATM use
and tell an adult, you are right!”). and purchasing skills (Alberto, Cihak, & Gama,
To evaluate the importance of voiceover, or 2005), vocational tasks (Steed & Lutzker, 1997),
verbal cues, Mechling and Collins (2012) cleaning (Wacker, Berg, Berrie, & Swatta, 1985),
compared video modeling with and without laundry (Wacker et al., 1985), and pedestrian
verbal cues for the acquisition of cooking tasks. navigation skills (Kelley, Test, & Cooke, (2013).
Each participant was taught three different In the study by Kelley et al. (2013), the pictures
cooking skills with each separate skill assigned used in the picture prompting procedure were
to either video modeling with verbal cues, video digital photos presented on an iPod that the
modeling without verbal cues, or to the control individual carried as he or she walked from one
(i.e., no audio or video). Using an alternating location to another. The pictures were of land-
treatment design, the researchers evaluated marks in the city that the individual used to help
which treatment was most effective at teaching navigate to a specific location.
the cooking skill. After determining the most Laarhoven, Kraus, Karpman, Nizzi, and
effective treatment for each participant, that Valentino (2010) compared the effectiveness of
treatment was used to teach the skill assigned to picture prompts and video prompts in teaching
the opposite treatment. For example, if video daily living skills. Picture prompts were pre-
modeling with verbal cues was found to be the sented in the sequence of correct steps bound by
most effective, that method was used to teach a ring clip. The participants were taught to
the skill assigned to the video modeling without review the picture and corresponding text, com-
verbal cues. Last, the most effective treatment plete the step, and turn to the picture ring for the
was then used to teach the skill from the control next instruction. Conversely, the video prompts
group. For all four individuals, the percentage displayed video models with voiceover narration.
of correct cooking steps increased in both video Video prompting and picture prompts were both
conditions relative to control. Video modeling found to be effective at teaching new skills, but
with verbal cues was the most effective method video prompting resulted in more independence,
for two participants, the two video conditions higher percentage of correct responding, and
were equally effective for one participant, and fewer prompts to utilize the technology. These
video without verbal cues was most effective for findings suggest that, if clinicians have the ability
one participant. Although these results slightly to use video technology with clients, their clients
favor the inclusion of verbal cues in voice over, would benefit by gaining independence faster
all participants benefitted from both teaching with the new skill.
methods.

Summary
Picture Prompts
Research demonstrates that a variety of behav-
A low-tech strategy similar to video modeling or ioral training procedures are effective for teach-
video prompting is the use of picture prompts. In ing the range of community living skills needed
the picture prompting procedure, a series of by people with disabilities to promote the maxi-
pictures illustrating each step in the task analysis mum degree of independence and autonomy in
is presented to the learner to evoke the correct the community. Common to all approaches is the
behavior at each step in the task analysis. Often, need for a task analysis of the skill being taught,
the sequence of pictures is bound in a three ring a teaching approach that evokes the correct
binder so the individual can flip through the responses in the chain of behaviors,
306 R.G. Miltenberger et al.

reinforcement to strengthen the behavior, and intensive approaches such as prompting and
strategies to promote generalization so the skills behavioral skills training may be needed. If
occur in the natural environment. Below, we the learner has less severe disabilities, less
offer some guidelines for teaching community intensive approaches such as video modeling
living skills to people with disabilities. may be appropriate. Some approaches require
technology and would be appropriate when
1. Identify the skill to be taught and the time and the trainer, school, or agency has access to the
place in which the skill should occur. Of the technology (hardware, software, applications)
many community living skills that can con- used in training and when the individual has
tribute to independence and autonomy, some experience with the technology.
will be chosen over others based on the needs 5. Identify the environment in which training
of the individual and the skills already present will occur and all the stimuli needed to con-
in the individual’s repertoire. The interven- duct training. Training can occur in an envi-
tion team will evaluate the individual’s cur- ronment separate from the community where
rent residential and vocational placements, the skills need to occur or training can occur
access to leisure activities, and the individ- in the community (i.e., the natural environ-
ual’s interests in choosing what skills to ment). If training occurs in a separate envi-
target. ronment (e.g., classroom or clinic), the
2. Conduct a task analysis of the skill. As stated training environment should simulate the
in the chapter, a task analysis must be con- natural environment so the skills come under
ducted for each skill to identify all component the stimulus control of stimuli from the nat-
behaviors (steps) and the SDs for each ural environment. For example, if teaching
step. This information is needed to adequately shopping skills in the classroom, actual items
assess and train the skill. from stores can be arranged on shelves to
3. Identify all the relevant discriminative stimuli simulate the shopping experience that would
(SDs) in the community in the presence of occur in a store. Sometimes training will
which the skill should occur. Each commu- occur in a classroom or clinic and, if the skills
nity living skill must occur at the appropriate do not generalize, training will continue in the
time and in the appropriate circumstances. natural environment. For example, Mil-
For example, playing a video game on a smart tenberger et al. (1999) taught sexual abuse
phone is appropriate at home during leisure prevention skills to women with intellectual
time but not at home when other tasks must disabilities in a classroom setting and when
be carried out (meal preparation, grooming, the skills did not generalize, the researchers
etc.) and not at work or at church. Identifying conducted in situ training which is training in
the SDs associated with best times and places the natural environment where the skills
to engage in the skill allows the trainer to should be occurring. Likewise, Bakken, Mil-
incorporate those stimuli into training to tenberger, and Schauss (1993) taught parent-
promote appropriate stimulus control and ing skills to parents with intellectual
generalization. disabilities in a classroom setting and when
4. Identify the training approach best suited for the skills did not generalize, they taught the
the learner and the skill being taught. This skills in the homes of the parents with their
chapter identified a number of training children present.
approaches demonstrated effective for learn- 6. Identify the strategies to be used to promote
ers with disabilities including various generalization of the skill to the natural
prompting strategies, computer simulations, environment. Strategies to promote general-
video modeling and video prompting, picture ization should be planned in advance and
prompts, and behavioral skills training. If the incorporated into skills training. To promote
learner has more severe disability, more generalization, all SDs should be identified
20 Teaching Community Living Skills to People with Intellectual … 307

and, to the extent possible, incorporated into Burke, R. V., Allen, K. D., Howard, M. R., Downey, D.,
training. By including all relevant stimuli Matz, M. G., & Bowen, S. L. (2013). Tablet-based
video modeling and prompting in the workplace for
(multiple exemplars), the stimuli from the individuals with autism. Journal of Vocational Reha-
natural environment are more likely to exert bilitation, 38, 1–14.
stimulus control over the behavior. In addi- Burke, R. V., Andersen, M. N., Bowen, S. L., Howard, M.
tion, skills should be chosen that will contact R., & Allen, K. D. (2010). Evaluation of two instruction
methods to increase employment options for young
naturally occurring reinforcement whenever adults with autism spectrum disorders. Research in
possible. For example, dance skills might be Developmental Disabilities, 31, 1223–1233.
targeted for individuals who like to dance and Cannella-Malone, H., Sigafoos, J., O’Reilly, M., de la
can attend weekly dances near their residence Cruz, B., Edrisinha, C., & Lancioni, G. E. (2006).
Comparing video prompting to video modeling for
or the use of computer games might be taught teaching daily living skills to six adults with devel-
to individuals who have access to computers opmental disabilities. Education and Training in
and have at least rudimentary computer skills. Developmental Disabilities, 41, 344–356.
Finally, it might be necessary to prompt the Chan, J. M., Lambdin, L., Laarhoven, T. V., & Johnson,
J. W. (2013). Teaching leisure skills to an adult with
skills in the natural environment and arrange developmental disabilities using a video prompting
for reinforcement of the skills as they occur in intervention package. Education and Training in
the natural environment, at least initially, so Autism and Developmental Disabilities, 48, 412–420.
the skills are more likely to occur and Dollar, C. A., Fredrick, L. D., Alberto, P. A., & Luke,
J. K. (2012). Using simultaneous prompting to teach
strengthened in the natural environment. independent living and leisure skills to adults with
7. Identify strategies to assess the skills in the severe intellectual disabilities. Research in Develop-
natural environment. Valid assessment strate- mental Disabilities, 33, 189–195.
Goh, A. E., & Bambara, L. M. (2013). Video
gies should be developed to measure the
self-modeling: A job skills intervention with individ-
effectiveness of the training procedures. Valid uals with intellectual disability in employment set-
assessment, often called in sit assessment or tings. Education and Training in Autism and
in vivo assessment, will measure the use of the Developmental Disabilities, 48, 103–119.
Harriage, B., Blair, K., & Miltenberger, R. (2016). An
skills in the natural environment where the
evaluation of a parent-implemented in situ pedestrian
skills would naturally occur without any safety skills intervention for individuals with autism.
prompts. When skills occur in the natural Journal of Autism and Developmental Disorders, 46,
environment consistently without prompts, 2017–2027.
Horn, J. A., Miltenberger, R. G., Weil, T., Mowery, J.,
training is deemed successful.
Coon, M., & Sams, L. (2008). Teaching laundry skills
to individuals with developmental disabilities using
video prompting. International Journal of Behavioral
Consultation and Therapy, 4, 279–286.
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Author Biographies
Raymond G. Miltenberger Ph.D., BCBA-D, is Professor of president of the Association for Behavior Analysis Interna-
Child and Family Studies and Director of the Applied tional and former member of the executive council of the
Behavior Analysis Program at the University of South Flor- Florida Association for Behavior Analysis. Dr. Mil-
ida. He completed his Ph.D. in clinical psychology and tenberger’s research interests include applied behavior anal-
applied behavior analysis at Western Michigan University ysis interventions in child safety skills, health, fitness, and
and his pre-doctoral internship at the Kennedy Institute at sports, and developmental disabilities. He has received
Johns Hopkins University Medical School. His is a past numerous awards for teaching, research, and mentoring.
20 Teaching Community Living Skills to People with Intellectual … 309

Heather Zerger M.A., BCBA, is a doctoral candidate in the using behavioral skills training and video modeling, along
Applied Behavior Analysis program at the University of with methodological studies such as the likelihood to produce
South Florida. She completed her Master’s degree at the false positives in single subject designs.
University of the Pacific. Her primary research interests Rocky D. Haynes, Jr., M.S., BCBA, works as a Board
include behavioral gerontology, physical activity in young Certified Behavior Analyst at the University of South Florida
children, and autism-related research. (USF) in the Interdisciplinary Center for Evaluation and
Marissa Novotny M.S. BCBA, is a second year doctoral Intervention and as a research assistant on the grant Students
student at the University of South Florida within the Applied with Autism Accessing General Education. He is also a
Behavior Analysis program. She received her Master’s doctoral student in the Applied Behavior Analysis program at
Degree at St. Cloud State University in Applied Behavior USF.
Analysis. Her research interests include teaching safety skills
 Career Development and Career
Design 21
Laura Nota, Lea Ferrari, Teresa Maria Sgaramella
and Salvatore Soresi

about “65% of children entering primary school

Introduction
today will ultimately end up working in com-
pletely new job types that don’t yet exist” (p. 3).
There is increased interest in the application of
Such dramatic societal shifts will require that
Life Design models (described subsequently) to
promoting self-determination become a focus of
career development, including the extension of
career development for all students, including
such models to childhood and early adolescence.
younger children (Wehmeyer, 2015).
These changes are motivated, from one side, by
The importance of early career development is
rapid technological advancements in society and,
also supported by an emerging emphasis in psy-
on the other, by cultural and theoretical
chology and related disciplines on positive human
advancements in understandings of early ages as
development and on the need to guarantee and
crucial for future career development (Hartung,
increase participation for all in work and life
2015). To be successful in rapidly changing
contexts (Nota, Soresi, & Ferrari, 2014; WHO,
societies, young people with and without dis-
2001). Indeed, a consistent integration between
abilities will need to acquire skills and compe-
individual strengths and contextual factors and
tencies considerably different from those required
resources in supporting positive development has
in past decades. For example, the Global Chal-
become a key point of many recent career
lenge Insight Report issued by the World Eco-
development approaches. The construct of Posi-
nomic Forum (2016), which focused on
tive Youth Development (PYD; Lerner, von Eye,
employment skills and workforce strategy for the
Lerner, & Lewin-Bizan, 2009; Lerner, Phelps,
“fourth industrial revolution,” underscored that
Forman, & Bowers, 2009), for instance, considers
adolescence as an age of flourishing (rather than
turmoil and chaos, as many theories of adoles-
L. Nota (&)
L. Ferrari
T.M. Sgaramella
cence depict the period) during which youth
S. Soresi mobilize their resources and navigate toward
Department of Philosophy, Sociology, Education higher levels of self-regulation, agency, and
and Applied Psychology, Larios Laboratory,
self-initiatives to achieve developmental mile-
University Center for Disability, Rehabilitation and
Inclusion, University of Padova, Padova, Italy stones. Some longitudinal studies (Lewin-Bizan
e-mail: [email protected] et al., 2010; Phelps et al., 2009) conducted to test
L. Ferrari the PYD have shown the existence of different
e-mail: [email protected] developmental trends from childhood to adoles-
T.M. Sgaramella cence supporting the validity of the five compo-
e-mail: [email protected] nents (five Cs) included in the model.
S. Soresi According to PYD, when youth experience
e-mail: [email protected] Competence (a positive view of one’s action in

© Springer International Publishing AG 2017 311

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_21
312 L. Nota et al.

social, academic, cognitive, and professional child, instead of the child’s abilities and com-
domains), Confidence (a generally positive view petencies. These respondents were generally
of self as opposed to domain-specific beliefs), negative in their beliefs that these students might
Connection (a set of positive exchanges that one day work in competitive, inclusive work
characterizes people and institutions), Character settings and self-determine their own future. As
(following social and cultural rules, principles, such, it is critically important that career devel-
and values that guide the behavior, what is right opment models applied to youth with disabilities
and wrong, and integrity), and Caring (attitudes assume competency and take strength-based
of sympathy and empathy toward others), they approaches to education (Shogren et al., 2015;
are more likely to be on a positive development Wehmeyer 2015).
trajectory and develop attitudes and behaviors In line with this view of career and life par-
that lead them to be individuals who contribute to ticipation, a special issue on children and career
their family, their community, and society. development of the International Journal for
Models of youth development such as PYD Education and Vocational Guidance (Nota,
emphasize the interaction between the personal Ginevra, & Santilli, 2015) called for research in
strengths and capacities of the young person and career education activities promoting extensive
the demands of the context and environment. and accurate occupational knowledge; increasing
What is necessary for the field of career devel- children’s abilities to collect information about
opment is that children and youth acquire skills the world of work; and reducing
that will enable them to create a “fit” between gender-occupational stereotypes so as to ade-
their skills and abilities and the demands of work quately prepare young people to cope with
and life contexts. This will consequently increase complex and changing work realities (Nota et al.,
the probability for children to actively participate 2015).
in the future to the world of work and achieve This chapter examines the most recent career
higher levels of life satisfaction, which in turn development research trends that concern chil-
requires investing in personal aspirations, hopes, dren, preadolescents, and adolescents, including
cognitive and behavioral skills and, at the same children and youth with intellectual disability.
time, in family, school, friends, and community Subsequently, suggestions for assessment and
supports. What emerges as relevant in career career education activities based on the work we
development is embracing strength-based models are conducting at the Larios Laboratory at the
of development that stress positive resources and University of Padova will be discussed.
move away from deficit-based models (Weh-
meyer, 2015).
In the school context, Nota et al. (2014) and Early Career and Vocational
Wang and Algozzine (2011) noted that teaching Development from Childhood
academic content and skills should be accom- to Preadolescence
panied by instruction in attitudinal, behavioral,
cognitive, motivational, and social skills (such as As previously discussed, changes in the world of
optimism, flexibility, self-knowledge, and work that require potential workers to interact
self-regulation) that will enable young people to with and impact different work environments to
engage successfully in the world of work. This is succeed have led some scholars interested in
equally important for young people with dis- career issues to emphasize the need of adopting a
abilities, for whom expectations about success in lifelong perspective and to conduct more
work are generally lower. In fact, in studying in-depth studies of antecedents of career devel-
teachers’ views about the future of students with opment as key elements for subsequent work
Down syndrome, Nota and Soresi (2009) found adaptation and well-being (Hartung, Porfeli, &
most teachers focused more on the limitations Vondracek, 2005; McMahon & Watson, 2008;
and deficits they ascribed to the disability and the Porfeli, Hartung, & Vondracek, 2008;
21 Career Development and Career Design 313

Schultheiss, 2008). This has resulted in increased promoted to gather appropriate knowledge both
research on career development during childhood about oneself, such as identifying personal
and preadolescence, although such research interests and values, and about the world of
remains fairly scarce (Rohlfing, Nota, Ferrari, education and work, such as collecting informa-
Soresi, & Tracey, 2012; Schmitt-Wilson & tion about education, training courses, and
Welsh, 2012), somewhat fragmented (Schul- occupations (Patton & Creed, 2007; Porfeli &
theiss, 2005), and involves mainly children Lee, 2012). Higher levels of exploration are
without disabilities. related to a wide range of career interests, and
According to the Life Design approach, devel- supporting their development and enlargement is
opment during childhood can be conceptualized in considered a resource for future career develop-
terms of its role as an antecedent to later career- and ment for children with disability (Harkins, 2001).
self-constructions (Hartung, 2015). Vocational Research conducted with typically developing
exploration and developing a positive mindset, children supports the idea that career exploration
each discussed below, are primary dimensions is closely related to the occupational knowledge
identified when beginning career development children develop and is strongly influenced by
activities in early ages, since they are prerequisites the opportunities provided in work-related con-
of career adaptability and career preparedness texts (Schultheiss, Palma, & Manzi, 2005). In a
(Hartung, Porfeli, & Vondracek, 2008). recent study involving elementary and middle
school students, Ferrari, Sgaramella, & Soresi
(2015) found that career exploration activities
Vocational Exploration such as gathering appropriate knowledge both
about self (e.g., interests and values) and about
Career exploration plays a major role in career the world of education and work (e.g., education,
and life designing as a mechanism capable of training courses, and occupations) predict chil-
supporting positive activities for children and dren’s enhanced knowledge about occupations.
preadolescents. From an early age, children’s In designing career exploration activities for
career exploration takes place through participa- young children, linking such activities to more
tion in leisure and school activities, which, in familiar domains (social) can enhance learning in
turn, help children and preadolescents prepare less-familiar vocational domains (Ferrari et al.,
themselves for interactions in the work context 2015).
(Cheung, 2015). Vocational exploration involves When examining issues pertaining to voca-
cognitive and affective activities; it is also tional exploration activities and children and
important in analyzing past and present experi- preadolescents with intellectual and develop-
ences and in planning future actions (Taveira & mental disabilities, some recent research has
Moreno, 2003). Cognitive aspects of vocational shown that as is the case with their peers without
exploration refer to the specific knowledge peo- disability, vocational exploration plays a role in
ple acquire when exploring about themselves and children gaining knowledge about their interests
their relevant educational, social, and occupa- and skills, as well as gaining knowledge about
tional worlds. An affective component involves the world, and that their participation in
feelings about information and insights arising out-of-school activities plays a crucial role (King,
during the exploration process (Flum & Blustein, Shields, Imms, Blacj, & Arern, 2013). These
2000). results underscore the relevance of increasing
As suggested by Porfeli et al. (2008), career parents and teachers’ awareness about the
and vocational exploration can be considered as importance of offering career exploration activi-
“pivotal mechanisms” that allow ones vocational ties to children in order to expand their under-
identity and self-knowledge (related to work and standing of the world of work.
career) to develop. During childhood and Determining areas of career interests is a pri-
preadolescence, exploration and learning can be mary task of early career development. Despite
314 L. Nota et al.

the fact that children with disabilities often have libraries, or giving them the opportunity to
more restricted opportunities than do their peers observe workers in their typical employment
without disabilities, research has shown that they environment. The importance of parents in the
have a comparable number of such interests. For development of interests and preferences was
example, Turner-Brown, Lam, Holtzclaw, Dich- further validated by Marquis and Baker (2015),
ter, and Bodfish (2011) asked parents of 60 who found low level of participation in sport
children with autism spectrum disorders and 63 activities by elementary school children with
children without disabilities from 6 to 17 years to developmental delays, as compared with typi-
evaluate their interests. They found the number cally developing children, was related to par-
of interests of children with autism spectrum enting factors and not disability-related factors.
disorders did not differ from that of their peers. It We agree with Shields, Synnot, and Kearns
was true, though, that children with autism (2015) who underscored that in implementing
spectrum disorders were more likely to be interventions to increase the participation of
interested in machines, mechanical systems, children with physical, intellectual, multiple, or
vehicles, building, computers, physics, object other disabilities, it is critical to take into account
motions than in social activities that involve children’s preferences and interests. At the same
people, religion, politics aspects, were less time, increasing parents’ capacities to promote
interested in social games, and show a higher career exploration with their children would
tendency to prefer playing alone. Similar results appear to expand their child’s understanding of
have been found by Anthony et al. (2013). the world and their interests (Levine & Suther-
Some evidence also suggests that there are land, 2013).
gender differences in children with and without
disability in relation to their early career devel-
opment preferences. For both groups Positive Mindset
(with/without disabilities) boys prefer
action-based activities such as Legos and video- Looking to the future with hope and optimism is
games and girls prefer social and artistic activi- among attitudes and skills that allows young
ties (Schultheiss et al., 2005; Ferrari et al., 2015; people to act in a self-determined manner and
Anthony et al. 2013). These findings suggest the successfully cope with the complexities of the
early influence of gender stereotyping; children work world. Such beliefs begin to emerge in
are influenced by what they see others doing and childhood, become more solidified by adoles-
what opportunities they are provided to explore cence, and persist into adulthood (Masten &
various options. Tellegen, 2012). In this section, we focus on
On the whole, these findings support the hope and optimism as attitudes that are important
benefit of involving children in reflective activi- to the development of career and vocational
ties that relate to career and vocational interests, development.
and of the need to provide non-stereotyped Hope is a motivational process that involves
knowledge about the world and the world of three components: goals, pathways, and agency
work (Meijers & Lengelle, 2012; Porfeli & Lee, goal-directed thinking (Snyder, 2002). Research
2012). Taveira and Moreno (2003) highlighted has highlighted that higher levels of hope are
the importance of emotionally supportive role related to more positive health and career out-
models, including parents and teachers, for 9– comes. In a study involving 529 students without
12-year-old children in facilitating their career disabilities and 327 students with learning dis-
exploration and information gathering. Children abilities from 10th to 12th grades, Idan and
in this study reported that adults supported them Margalit (2014) found that high levels of hope
in constructing their occupational knowledge by mediated the relationship between various risk
taking them to places such as museums and and protective factors related to positive
21 Career Development and Career Design 315

development, as well as mediating the relation- (Blacher, Baker & Berkovits, 2013). In fact,
ship between academic self-efficacy and student across parents and families with and without a
attributions of achievement and effort. child with a disability, parents with a positive
Optimism refers to a stable predisposition to mindset transmit such attitudes to their children.
“believe that good rather than bad things will Porfeli, Ferrari, and Nota (2013), for example,
happen” (Scheier & Carver, 1985, p. 219). Dur- found that the more parents assumed a positive
ing the course of development, it is negatively attitude toward their work and described their
associated with depression, anxiety, non-adaptive experiences positively, the more likely it was that
behaviors, and suicide risk, and positively cor- their children had positive attitudes toward work
related with physical health, life satisfaction, and and higher school achievement.
positive interpersonal relationships (Malinauskas To promote the development of hope and
& Vaicekauskas, 2013; Reivich, Gillham, optimism and a positive mindeset, people inter-
Chaplin, & Seligman, 2013). For example, ested in early career and vocational development
Deptula, Cohen, Phillipsen, and Ey (2006) need to provide positive experiences and sup-
studied 232 3rd to 6th grade elementary school ports for young people to be future oriented.
students and showed optimism was associated (Lopez, Rose, Robinson, Marques, &
with more positive relationships, higher social Pairs-Riberio, 2009; Zager, 2013).
acceptance, and lower levels of loneliness and
isolation. Ginevra, Carraro, and Zicari (2014),
assessed hope and optimism in 340 4th and 5th Career Assessment Instruments
grade students and found that more positive for Children and Preadolescents
levels of hope and optimism predicted better
social skills, better life satisfaction, and more The increasing interest in promoting career
positive self-perception. Moreover, they development starting at younger ages has trig-
observed that hope and optimism correlated with gered the creation of numerous qualitative and
resilience. quantitative assessment instruments. In this sec-
With regard to these issues as they pertain to tion, we mainly focus on instruments for
students with intellectual disability, Muller and assessing occupational knowledge and positive
Prout (2009) selected a group of 269 students mindset.
with intellectual disability from a national dataset With regard to assessments of occupational
and matched them with 267 students without knowledge, several self-report and structured
disabilities. All students were between 7th and interview formatted assessments have utility,
12th grade. They found that optimism did not including the Revised Career Awareness Survey
increase across time from preadolescence to later (McMahon & Watson, 2001), the Job Knowl-
adolescence, as it did in typically developing edge Survey (Loesch, Rucker, & Shub, 1978),
students. These authors suggested that to facili- the Inventory of Children’s Activities-Paired
tate of optimism among youth with intellectual (Tracey & Darcy, 2002; Tracey & Caulum,
disability, these young people needed to be 2015), and the Career Exploration Scale (Tra-
provide more opportunities to engage in future cey, Lent, Brown, Soresi & Nota, 2006). In the
planning, set goals, and learn the kinds of path- Italian context, Ferrari et al. (2015) developed the
ways thinking emphasized in hope theory and in Occupational Knowledge Interview to assess
promoting self-determination. children’s perception of occupational knowledge
Researchers focused on issues of disability and actual occupational knowledge. It is com-
and positive mindset study parents of children posed of 12 cards, each depicting one occupa-
with disabilities more than their children (Shog- tion, two from each of Holland’s categories:
ren, 2013). Hope and optimism have been iden- Realistic (airplane pilot, fireman), Investigative
tified as factors that sustain parental resilience, (pharmacist, veterinary), Artistic (actor/actress,
positive parenting, and overall family well-being journalist), Social (nurse, schoolteacher),
316 L. Nota et al.

Enterprising (shop assistant, taxi driver), and things will happen to me than bad things.” The
Conventional (accountant, administrative assis- validity and reliability analyses conducted by the
tant). The interview consists of two sections: the authors showed positive results, with Cronbach’s
first section probes perceptions of knowledge in alpha of .91.
12 occupations, using a 4-point Likert scale For preadolescents, Visions about the Future
(1 = I do not know; 4 = I know very well); the was developed (see Table 21.1) to measure ori-
second investigates actual occupational knowl- entations toward hope and optimism (Ginevra,
edge, asking participants to list any action, task, Santilli, Di Maggio, Nota, & Soresi, under
or activity that is carried out by workers in the review). The version for middle school students
same 12 occupations. The interrater agreement includes 19 items on a 5-point Likert scale
for the measure was over 96% for each of the (1 = not strong; 5 = strongest) and assesses ori-
analyzed occupations. Moreover, the interview entation toward hope (seven items, e.g., “In the
allowed researchers to differentiate children by future I will be involved in very important pro-
age and gender and to detect occupational jects”); orientation toward optimism (six items,
knowledge changes. e.g., “Even in the face of difficulties, I think I will
There are a number of assessments of hope remain an optimist”); and orientation toward
that are widely available, including the Young pessimism (six items, e.g., “It is useless to hope
Children’s Hope Scale developed by McDer- in the future: I will not be able to do what I have
mott, Hastings, Gariglietti, and Callahan (1997) in mind”). The confirmatory factor analysis car-
for children aged 5–7 years, and the Children’s ried out supported a second-order structure,
Hope Scale developed by Snyder et al. (1997) for regarding a general sense of positive orientation
participants aged 8 to 16 years. In the Italian toward the future. Additionally, high levels of
context, to assess hope in 4th and 5th grade internal consistency were found (ranging from
students, Ginevra, Carraro, et al. (2014) devel- .76 to .91).
oped a self-report measure titled My Hope. It
consists of six items (e.g., “I think how to get
things that are important for me”) on a 6-point Adolescents with and Without
scale ranging from 1 (never) to 6 (very often). Intellectual Disability
The validity and reliability analyses were posi-
tive, with a Cronbach’s alpha of .77. As young people reach adolescence, themes such
As is the case with measures of hope, there are as career exploration and development of a pos-
several instruments published in the international itive mindset are still relevant (Lerner et al.,
literature to measure optimism for children, 2005; Lerner et al., 2009b). This period is also
preadolescents, and adolescents. Among these, characterized by numerous, rapid developmental
there are: the Optimism-Pessimism Test Instru- changes in identity development and by adoles-
ment (Stipek, Lamb, & Zigler, 1981), for chil- cents’ interactions with their environments and
dren aged 6–12 years; the Youth Life Orientation contexts (Lerner et al., 2009a; Rutter, 2007).
Test (Ey et al., 2005) for children 7–16 years; Because forces such as those discussed previ-
and the Life Orientation Test (Scheier & Carver, ously have dramatically changed the work mar-
1985) for children as young as 8 years of age. In ket and context, resulting in more complex and
the Italian context, Ginevra, Carraro, et al. (2014) frequent work-related transitions (Savickas et al.,
developed a 6-item self-report scale titled What 2009), adolescents need support to become
Will Happen to Me?. Items are constructed using experts in “designing” a life that fits their wants,
a 5-point scale (1 = I never think so; 5 = I interest, and needs. These skills have become
always think so) to measure the child’s propen- critical to enable youth to anticipate and deal
sity to expect more positive, rather than negative, with transitions and to develop resources to
events. An example of item is “I think more good manage frequent career and life transitions (Nota,
21 Career Development and Career Design 317

Table 21.1 Visions about the future questionnaire for Adaptability

preadolescents (Ginevra et al., under review)
Visions about future Adaptability is a psychosocial construct grouping
Instructions individuals’ resources relevant to interacting with
Listed below there is a set of statements which refer to and adjust to contexts, situations, dilemmas, and
things you could think or do. Please, read them one at a opportunities. Career adaptability refers to the
time and while choosing an answer remember that skills and attitudes that people need to use to
1 stands for “it describes me not at all” adapt to unexpected circumstances related to the
2 stands for “it describes me a little” changing work market and job conditions (Sav-
3 stands for “it describes me fairly well” ickas & Porfeli, 2012). Career adaptability is
4 stands for “it describes me well” critical to actively constructing one’s career life,
coping with situations experienced in changing
5 stands for “it describes me very well”
work environments (Karaevli & Hall, 2006;
.
Savickas, 2013). The four resources that lead to
1. I think I am an optimist career adaptability include: (1) concern for the
2. I experience many moments of happiness future, meaning the ability to connect past with
3. Usually, I am full of enthusiasm and optimism present and to be positively projected toward
4. Certainly, I will experience more positive things than future; (2) control, referring to the tendency to
negative ones consider the future at least in part manageable
5. I consider myself as a person who thinks positively and to keep people involved in the task; (3) cu-
6. I will not realize what I really care about riosity, or the predisposition to explore the
7. Even in the face of difficulties, I think I will remain environment and to acquire information about
an optimist oneself and the outside world; and
8. I feel that I will get by quite well (4) self-confidence, the belief in own ability to
9. I know eventually I will get what I desire handle challenges, obstacles, and barriers that
may be encountered in pursuing life and work
10. In the future, I will do what I am not able to do
today goals (Savickas, 2011).
11. Certainly in the future, I will be able to realize
The propensity to look to the future, recog-
something interesting for me nizing one’s right to make decisions autono-
12. In the future, I will work with persons who will mously, to explore vocational opportunities and
estimate me so much build up a sense of efficacy in coping with the
13. In the future, I will settle for what I will be able to challenges contributes to the development of
do adaptability during adolescence (Hartung, et al.,
14. I will hardly find a job really suitable for me 2008). In examining career adaptability predic-
15. I will have little hopes in the future tors and adaptability effects on the development
16. In the future, I will be involved in very important
of a sense of power and life satisfaction, Hirschi
projects (2009) found goal directedness, capability
17. In the future, I will stop dreaming and hoping beliefs, and social context were predictors of
career adaptability. Moreover, higher levels of
18. It is useless to hope in the future: I will not be able
to do what I have in mind career adaptability predicted a sense of growing
19. I know I will fulfill my desires one day
power and life satisfaction experienced by ado-
lescents. Additionally, Hirschi (2010) observed
that the degree of adaptability explained realism
Ginevra, Santilli, & Soresi, 2014; Savickas et al., and stability of career aspirations.
2009). These include issues pertaining to adapt- Career adaptability is also strongly positively
ability, career and life preparedness, and courage. correlated with vocational identity, in-depth
318 L. Nota et al.

career exploration, and identification with career developmental disabilities, aged 17–20 years.
commitments in adolescents (Porfeli & Savickas, With a one self-constructed question (with
2012) as well as with motivation in educational response options yes, completely/yes, partly/no),
environments (Pouyaud, Vignoli, Dosnon, & these authors analyzed expectations for future
Lallemand, 2012). Adolescents with higher work of young people with intellectual or
career adaptability have more sense of personal developmental disabilities, and the extent to
control and consequently may be able to more which these expectations predicted work out-
easily navigate the world of work proactively comes. Confidence in being actively involved in
(Duffy, 2010). A study conducted by Soresi, work strongly influenced future employment
Nota and Ferrari (2012) underlined the relevance outcomes for these young people. The study
of career adaptability in adolescent development, provides further support to the relevance of
showing that higher levels of adaptability are addressing adaptability resources in research
associated with lower perceived internal and involving adolescents with intellectual and
external career barriers, a broader range of career developmental disabilities.
interests, and with a higher quality of life.
Additionally, adolescents with higher career
adaptability were more career directed, more Career and Life Preparedness
projected toward the future, and more competent
as with regard to their future career intentions Requests and challenges posed by the context are
and in transforming their intentions into often unexpected and unpredictable. As such,
goal-oriented behaviors. More recently, Wilkins, career and life preparedness skills become
Santilli, Nota, Tracey, and Soresi (2014) in a important. Preparedness can be defined as being
sample of 242 Italian high school students found prepared to respond to situations characterized by
that both hope and optimism significantly pre- uncertain outcomes; being prepared to identify
dicted career adaptability components and that barriers and to capture opportunities (Sweeny,
curiosity and confidence mediated the relation- Carroll, & Sheppard, 2006), and to be able to
ship between hope and students’ subcomponents develop plans and goals and evaluate opportu-
of satisfaction. nities and competencies needed to reach these
Although, as discussed, numerous studies goals (Salmela-Aro, Mutanen, & Vuori, 2012).
have shown the relevance of career adaptability According to Lent (2013), preparedness
resources for adolescent development, studies includes the ability to manage environmental
involving adolescents with intellectual and barriers and supports, together with the ability to
developmental disabilities are rare. A study recall personal experiences and attitudes, all in
involving 120 adults with intellectual disability order to face transitions and challenges. Career
who had worked in competitive job settings for at preparedness can be viewed as vigilance to
least six months (Santilli, Nota, Ginevra, & threats and opportunities in work life and
Soresi, 2014) showed that career adaptability involves the resources and skills to respond to
indirectly, through agency and pathway compo- such threats and opportunities. Earlier interven-
nents of hope, predicted life satisfaction, thus tion studies have shown that preparedness for
supporting the idea that the same dimensions are work-life transitions can be enhanced through
at work in people with intellectual disability and group interventions that apply social modeling
that career adaptability may facilitate positive life and active learning techniques (Vuori, Price,
and career design. Mutanen, & Malmberg-Heinonen, 2005).
Indirect evidence for the role that confidence Detailed studies on preparedness in adolescents
may play has been provided by Holwerda, and, more specifically, in adolescents with dis-
Brouwer, de Boer, Groothoff, and van der Klink abilities have yet to be conducted.
(2015), who conducted a qualitative study Sgaramella, Di Maggio, Bellotto, and Castel-
involving 341 people with intellectual and lani (2014) conducted a pilot study examining
21 Career Development and Career Design 319

these issues with university students, who com- and resources to address that future (hope, opti-
pleted questionnaires dealing with attitudes mism, resilience, future time perspective, and
toward the future and their resources to deal with adaptability) and five questions dealing with the
threats and challenges, including a questionnaire courage they recognized in themselves. A re-
dealing with preparedness. Results highlighted gression analysis showed the predictive role of
that preparedness to deal with barriers, vigilance, courage that adolescents recognized in them-
and exploration was the strength for young selves on both attitudes toward the future and the
people with disabilities, when compared to a level of adaptability they recognize in themselves
group of peers without disability. Additionally, (Sgaramella, 2015).
hope was associated with a set of skills relevant Indirect evidence about courage in people with
for preparedness, such as the ability to do not let intellectual and developmental disabilities can be
themselves be caught off guard; to anticipate found in studies involving parents or caregivers
both barriers to future goals and search for sup- of people with intellectual disability. Carter et al.
ports to persist even in front of difficulties; the (2015) analyzed answers provided by 427 parents
propensity to change and flexibility by showing or caregivers of youth with intellectual disability
interest in new activities, and investment in or autism between 13 and 21 years old, to two
education. items dealing with courage in the Assessment
Scale for Positive Character Traits–Develop-
mental Disabilities (ASPeCT-DD; Woodard,
Courage 2009). The study showed that about 70% of these
young people were considered to be somewhat to
A resource which can foster the ability to posi- extremely courageous, as rated by parents or
tively face continuous challenges to well-being caregivers. Using the same two items, Toigo
and full inclusion is courage. A recent special (2014) found that in a group of 27 young adults
issue of the Journal of Positive Psychology with Down syndrome, young adults who were
examined various emerging theories of courage perceived as more courageous by their teachers
(Rate, Clarke, Lindsay, & Sternberg, 2007). were also characterized by higher hope and
Using multiple methodologies and measurement higher levels of future-oriented thinking.
approaches, authors identified some common
components in definitions of courage found in
the literature: intentionality, fear, risk, and Instruments Addressing Life Design
nobility of purpose. Dimensions in Adolescents
Studies in career counseling and vocational
guidance have shown an association between Life Design strengths in adolescents can be
courage and the propensity to persevere, be open assessed by both formal and informal processes
minded, be resilient, and have a future orienta- (Erickson, Clark, & Patton, 2013). Such determi-
tion (Hannah, Sweeney, & Lester, 2007; Pury, nations are best conducted in the context of
Kowalski, & Spearman, 2007; Rachman, 2004). person-centered planning processes (Carter,
Courageous individuals are more confident in Boehm, Biggs, Annandale, et al., 2015; Claes, Van
their personal ability to manage complex and Hove, Vandevelde, van Loon, & Schalock, 2010).
unexpected situations, and in dealing with bar- With regard to assessment instruments, the
riers (Amundson, Borgen, Iaquinta, Butterfield, Career Adapt-Abilities Scale is widely used and
& Koert, 2010). A recent study conducted in the is composed of 24 items that assess the core
Larios Laboratory involved 70 adolescents, aged dimensions of adaptability: concern, control,
15–17 years, who answered several question- curiosity, and confidence (CAAS; Savickas &
naires dealing with attitudes toward the future Porfeli, 2012). The reliability of the CAAS
320 L. Nota et al.

subscales and the combined adaptability scale the environment and collecting information on
ranges from acceptable to excellent, depending the world of work (four items; alpha .77); finding
upon the language. supports and resources to be ready when facing
Another comprehensive instrument analyzing difficulties (four items; alpha .72); and investing
career adaptability, the Career and Work in education (five items; alpha .78).
Adaptability questionnaire, was designed to The most widely used measure of courage is
assess adolescents’ career adaptability. Nota, the Norton and Weiss (2009) self-perceived
Ginevra, and Soresi (2012) developed this courageousness measure, based upon an opera-
31-item self-report measure, which collects in- tional definition of courage as persistence or
formation on dimensions of career and work perseverance despite having fear. Items are rated
adaptability: concern, curiosity, control, confi- by a 7-point Likert-type scale, from 1 (Never) to
dence, and cooperation. These dimensions reflect 7 (Always). Example items include “I tend to
the ability to cooperate with others, to establish face my fear”; “If the thought of something
positive interactions useful to facilitate reflec- makes me anxious, I usually will avoid it”;
tions about the future, and to create supportive “Even if I feel terrified, I will stay in that situa-
social networks (Nota & Soresi, 2003). The tion until I have done what I need to do.”
measure also highlights the importance of rela- Two research centers in Italy [Larios Labo-
tionships developed in different life areas, for ratory of the Centro di Ateneo Disabilità, Trat-
both professional and personal reasons. tamento e Integrazione (University Centre for
From a qualitative perspective, the Career Disability, Treatment and Inclusion) at the
Style Interview (Savickas, 2005) is a useful means University of Padova] have developed a quali-
to identify life themes, gathering information in tative process to examine career and vocational
the form of stories narrated by clients, among elements, including courage. Examples of ques-
others, about adaptability strategies, motivations, tions from this qualitative procedure are reported
and personality style. Questions such as “How in Table 21.2.
can I be useful to you in constructing your
career?” are used to elicit clients’ goals for
counseling, while seven core questions are used
Table 21.2 Example of questions on courage
to elicit narratives from clients for understanding
and constructing their life and career stories. 1. In the past, in your life did it happen to you to be
courageous yes⎕ no ⎕
The Career Preparedness Questionnaire was
If yes, try to describe a situation in which according to
developed by Soresi, Nota, Ferrari, and Sgar-
your opinion you showed courage
amella (2014). The dimensions covered include
2. Recently, did you have the opportunity to be
accepting responsibility to reach personal and courageous yes⎕ no ⎕
career goals (four items; alpha .79); anticipating
If yes, try to describe a situation in which according to
barriers and difficulties and identifying alterna- your opinion you showed courage
tive solutions to reach personal goals (seven 3. Do you believe that future will require you to be
items; alpha .81); propensity to change and show courageous yes ⎕ no ⎕
flexibility with regard to interests in new activi- If yes, try to describe a situation in which according to
ties and changes in the work context (five item; your opinion you will be asked to be courageous
alpha .78); capacity to take advantage of oppor- 4. Try to tell a story someone in your family or a person
tunities in the work context (six items; alpha .79); close to you has told or still tells you which in your
persevering when facing difficulties and unpre- opinion represents a particularly courageous
experience
dictable events (six items; alpha .82); exploring
21 Career Development and Career Design 321

In questions 1, 2, and 3 (see Table 21.2), Wehmeyer, 2013). As Hartung (2015) suggested,
respondents are asked to reflect on and then rate it is necessary to consider children within career
(from least amount of courage to a great deal of and Life Design research and invest in career
courage, as determined by a 5-point Likert-type education training program to promote the early
scale) a situation that required courage, when the development of career adaptability’s prerequi-
situation occurred, where it happened, and who sites with young children.
was there. Further, respondents relate what they Given this need to carry out early career
did and how they felt; what they achieved and education programs, over the past two years, we
how, and eventually how people near him/her have devoted our efforts to develop career edu-
behaved. cation programs from childhood to adolescence,
The instruments described in this and in the aimed at stimulating critical thinking and cre-
previous section can be used in school contexts ativity; promoting equal relations with others;
to give attention to occupational knowledge, emphasizing social justice and solidarity; devel-
positive mindset, career adaptability, career pre- oping self-determination, hope, and optimism
paredness, and courage and start to plan and toward the future; and fostering skills to manage
implement preventive actions. In this chapter, we their careers and lives (Nota, Ferrari, Sgaramella,
focus on career education programs for primary & Soresi, in press; Soresi et al., 2012). Two of
school children. these interventions, one on occupational knowl-
edge and one on hope and optimism, are
described in the sections that follow.
Career Education Programs A career education program titled “They are
for Children with and Without Working. What are they Doing? First Steps
Disability Toward Knowledge of the World of Work” was
carried out with the aim of promoting occupa-
According to a Life Design approach, people tional knowledge in children ages 3–5 years.
interested in career development and the life This career education program consists of 10
satisfaction of young people should act and steps: the first eight intend to illustrate 16 pro-
intervene in ways that equip these young people fessions (two for each step), the ninth focuses on
to interact with their environments and develop the kindergarten teacher and children’s parents’
the skills that enable them to create or design jobs, and the last considers jobs familiar in the
their own career (Savickas et al., 2009). children’s daily life. Each step lasts about 45 min
Researchers have the responsibility to develop and involves a small group of about five children.
and test specific intervention efforts that could be In the first eight steps, actions, tools, workplace
easily learned and implemented by teachers and information, and the skills and knowledge
parents and to facilitate school-family collabo- required for undertaking 16 professions are pre-
rations to increase the young person’s opportu- sented. In addition, so as to prevent and reduce
nities to participate in daily and community life. the formation of stereotypical ideas about the
With regard to children with disabilities, sup- world of work, male and female workers are
porting and intervening in integrated, real work presented for each profession. The professions,
contexts is critical (Shogren, Luckasson, & related to the six professional fields of Holland,
Schalock, 2014; Wehmeyer, 2015). Such efforts are listed in Table 21.3 together with the 10
should, for example, stimulate critical thinking steps.
and creativity; promote self-determination, social A manual for the facilitator was created. For
justice, and solidarity; reduce contextual and each step, the manual includes a description of
social barriers to these dimensions; and support the goal in terms of skills that should be
children to develop their resilience in the face of encouraged, the prerequisites that should be
occupational adversities (Nota, Ferrari, & Sgar- checked at the beginning of each step, and how
amella, & Soresi, in press; Soresi et al., 2012; to present the goal in the step to the children.
322 L. Nota et al.

Table 21.3 Steps of the early career education program Another component of our efforts to begin
‘They are working. What are they doing? First step toward career development with younger children focu-
the knowledge of the world of work’
ses on hope and optimism. Nuggets of Optimism
First step: “They are working. What are they doing? and Hope to School (Ginevra et al., 2014) is a
Knowing the job of nurse and salesman and
saleswoman”
3-h workshop for elementary school children
developed to get them to begin to reflect on the
Second step: “They are working. What are they doing?
Knowing the job of the fireman and firewoman and of meanings of optimism and hope, to identify
the musician” similarities and differences between the two, and
Third step: “They are working. What are they doing? to identify the main characteristics of an opti-
Knowing the job of veterinary and the waiter and mistic and hopeful child. By using examples
waitress” from school and extracurricular settings, the
Fourth step: “They are working. What are they doing? children with and without disabilities are trained
Knowing the job of the gardener and the pharmacist” to recognize optimistic thoughts and distinguish
Fifth step: “They are working. What are they doing? them from negative ones, highlighting the
Knowing the job of the policeman and policewoman and
importance of optimistic ways of thinking and
the painter”
behaving for growth and future development.
Sixth step: “They are working. What are they doing?
Knowing the job of the accountant and the computer
With regard to the development of hope, exer-
technician” cises to facilitate goal setting and the production
Seventh step: “They are working. What are they doing? of hopeful and optimistic ideas to pursue their
Knowing the job of the builder and the photographer” goals are presented. The workshop ends with a
Eighth step: “They are working. What are they doing? vignette (Valeria’s Story), and children are gui-
Knowing the job of the postman and the hairdresser” ded to identify her optimistic thoughts and the
Ninth step: “They are working. What are they doing? strategies she used to achieve her goals. To verify
Knowing the job of the kindergarten teacher and that of the efficacy of this workshop, 71 elementary and
father and mother” middle school students were asked to complete a
Tenth step: “They are working. What are they doing? pre- and posttest of the following sentences:
Knowing where people work in my neighborhood” “The optimistic person is…”, and “The hopeful
person is…”. At the end of the workshop, par-
ticipants expressed a clear understanding of the
Moreover, the manual includes a description of discussed topics and described with more detail
verbal and nonverbal behavior the facilitator the characteristics of an optimistic and hopeful
should use, as well as teaching techniques and person, significantly improved over the pretest.
materials for goal pursuit and attainment. To
engage children and facilitate learning for each
step, video, photographic, and graphic materials Conclusion
are provided, as are recommendations for other
multimedia sources from the Internet. This work has offered us the opportunity to delve
Forty-eight kindergarten children were into issues pertaining to career development and
involved in a pilot study of the process. Among Life Design of children with and without intel-
the 25 children in the experimental group, one lectual disability from infancy to adolescence
had intellectual disability. To verify the efficacy from a positive and strength-based perspective.
of the intervention, a modification of the Occu- This chapter underlines the limited number of
pational Knowledge Interview (Ferrari et al., studies available in the literature in the field of
2015), described previously, was developed. career and Life Design involving children and
Results showed that children, included the child adolescents with intellectual and developmental
with intellectual disability, increased their disabilities. Results from studies involving chil-
knowledge about various professions, including dren and adolescents without disability clearly
those of their parents (Ferrari & Nota, in press). suggest the relevance of devoting more efforts to
21 Career Development and Career Design 323

depicting a positive mindset could have on career views from the sunny side of the street. In M.
and life outcomes as well as the relevance of L. Wehmeyer (Ed.), The Oxford handbook of positive
psychology and disability (pp. 166–181). Oxford, UK:
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such as career adaptability, preparedness, and Carter, E. W., Boehm, T. L., Biggs, E. E., Annandale, N.
courage. H., Taylor, C. E., Loock, A. K., et al. (2015). Known
Additionally, the emphasis on preventive for my strengths: Positive traits of transition-age youth
with intellectual disability and/or autism. Research
actions aimed at stimulating better knowledge of and Practice for Persons with Severe Disabilities, 40,
the world of work and introducing information 101–119.
about prerequisites of career resources appear Cheung, W. L. R. (2015). Fostering career exploration.
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Author Biographies
Laura Nota, Ph.D. is Delegate of the Rector for Inclusion Teresa Maria Sgaramella, Ph.D. is professor of Psychology
and Disability, professor of Psychological Counselling for the of Disability and Inclusion and of Rehabilitation Counseling
Inclusion of Social Disadvantage, Career Construction and at the University of Padova. Research efforts focus on indi-
Career Counselling and Director of the Laboratory for vidual and contextual resources available to persons with
Research and Intervention in Career and Life Design. She is disability or vulnerabilities in constructing positive identities,
President of the European Society for Vocational Designing in fostering inclusion and satisfying living conditions, and in
and Career Counseling (ESVDC) and of the Italian Associ- future goals construction.
ation for Vocational Guidance (SIO). Dr. Nota serves as
Salvatore Soresi, Ph.D. is senior scientist of Psychology of
associate editor of the International Journal for Educational
Disability at the University of Padova where he founded the
and Vocational Guidance and of Journal of Police and
University Centre for Inclusion and Disability, the Italian
Practice in Intellectual Disabilities. Her research efforts are
Society of Vocational Guidance (SIO) and the European
directed toward analyzing social abilities and inclusion pro-
Society of Vocational Designing and Career Counseling. He
cesses at school and in the work context as well as devising
was recognized ‘For Distinguished Contributions to Interna-
procedures and instruments for the career counseling and
tional Counseling Psychology’ from the Society of Counsel-
work inclusion of people with disability.
ing Psychology (American Psychological Association), from
Lea Ferrari, Ph.D. is professor of Psychology of Disability the European Society for Vocational Designing and Career
and Inclusion and of Managing Diversity in the Workplaces Counseling, and in 2014 from the International Association of
at the University of Padova. Her research efforts focus on Applied Psychology. He has published extensively in the field
personal and contextual factors affecting the social inclusion of inclusion of people with disability. His research efforts
and quality of life of people with and without disability as focus on school, work and social inclusion of people with and
well as diversity management, job search and psychosocial without disability, family and social health workers involve-
distress in people with disability. ment, and vocational designing in people with disability.
 Supported and Customized
Employment 22
Wendy Parent-Johnson and Laura Owens

strengths, introducing the concept of supports

Introduction
and encourage active involvement of the person
with a disability in their supports planning. The
As a practitioner, you may ask “What can I do to
recommendations you make can impact the
contribute to a person’s happiness and
career and life goals guiding other team members
well-being?” After all, your role may be very
and service delivery areas.
prescribed, as in diagnosing or providing treat-
Research has shown that happiness influences
ment; it may be brief, as dictated by insurance
health, which in turn influences school, work,
and other parameters; or it may be specific, as a
and quality of life (e.g., Graham, 2008;
therapist or subspecialty provider. Or, while you
Veenhoven, 2008; Diener & Chan, 2011). Work
may be an essential member of the support team,
is a major contributor to the overall happiness of
you may not be the person who has responsibility
all people, including those with intellectual and
for leading and coordinating the many people
developmental disabilities. It is what we do every
providing supports. For people with intellectual
day. People work for many reasons: to contribute
and development disabilities whom you support,
to society, meet new people and grow as a per-
this question may seem even more complicated.
son, be a social player, and make money. The
So, how can you make a difference?
contribution of all people is needed for our
It is important to consider every interaction
communities to thrive, and integration and work
you have as an opportunity to enhance and
are a normative part of everyone’s life. Work
contribute to the factors that promote personal
gives us meaning, status, purchasing power,
growth, life satisfaction, and happiness.
connections, and engagement in our communi-
Remember, you may be the one person who
ties. Further, work is a means for gaining status,
plants the seed and changes the trajectory for that
building self-determination, and achieving per-
person’s life. Start by having high expectations
sonal goals and is connected to obtaining pos-
for all people, regardless of disability label.
sessions, prestige, power, and influence. All of
Recognize the whole person beyond the diag-
these reasons for work are tied to positive psy-
nosis. Focus on identifying each person’s
chology, in particular, happiness, well-being,
social capital, and resiliency. In effect, positive
psychology impacts everything we do, particu-
W. Parent-Johnson (&) larly work.
University of South Dakota, 1400 West 22nd Street,
Unfortunately, people with intellectual and
Sioux Falls, SD 57105, USA
e-mail: [email protected] developmental disabilities may never experience
the positive benefits that work has to offer. High
L. Owens
University of Wisconsin–Milwaukee, Milwaukee, unemployment rates for this population con-
WI 53202, USA tribute to lives frequently characterized by

© Springer International Publishing AG 2017 329

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_22
330 W. Parent-Johnson and L. Owens

increased poverty (Institute on Disability, 2014), (Seligman & Csikszentmihalyi, 2000). Simply
poorer health (Yee, 2011), greater health dis- stated, positive psychology focuses on what
parities (Office of Disease Prevention and Health makes life most worth living. Positive psychol-
Promotion, n.d.), social isolation (Disabled ogy is grounded in the belief that people want to
World, 2011), lack of friends and loneliness lead meaningful and fulfilling lives, to cultivate
(Gilmore & Cuskelly, 2014; Tracey, 2015), and what is best within them, and to enhance their
reduced social capital (Mithen, Aitken, Ziersch, experiences in love, work, and play (Positive
& Kavanagh, 2015). This chapter will describe Psychology Center, 2016). People with disabili-
how you can be a catalyst for changing to pro- ties also need to have meaning in their lives, and
mote integrated employment and enhance the work offers that to them. Finding meaning and
quality of life outcomes associated with positive purpose in life is something we all strive for and
psychology for people with disabilities. is the desired outcome of positive psychology.
Positive psychology, as it relates to work, focu-
ses on four indicators: happiness, well-being,
Work and Positive Psychology social capital, and resiliency. All four of these
indicators build human capability and quality of
Whether we like it or not, facing obstacles is part life.
of life; challenges help us to grow, change, and
adapt to the world around us. Every challenge
and every difficulty we successfully confront in Happiness
life serve to strengthen our will, confidence, and
ability to overcome future obstacles. Herodotus, Positive psychology is the study of three char-
the Greek philosopher, said, “Adversity has the acteristics of what makes life worth living:
effect of drawing out strength and qualities of a (1) positive emotions; (2) positive traits such as
man that would have lain dormant in its strengths and talents; and (3) positive institutions
absence.” Historically, services and supports for such as democracy, strong families, and free
people with intellectual and developmental dis- inquiry (Seligman, 2002, 2004). People with
abilities have been guided by a “fix the person” disabilities want the same things as the rest of us
model that emphasizes the disability and not the —a meaningful life. They want to contribute to
many abilities that characterize each person. This their communities, have friends, use their skills
medical or system approach often imposes cri- and abilities, and have interesting things to do.
teria that people must meet before they are con- Positive thinking and happiness have the
sidered ready and able to pursue certain life ability to create positive change in the work lives
events, such as employment, often limiting the of everyone. According to research, happy peo-
options available to them. Over the years, psy- ple: are more productive at work, are more cre-
chology, embedded in this medical model, has ative; make more money, have better jobs; are
typically focused on the negative aspects of better leaders and negotiators; have more friends
disability. and social support; are physically healthier (and
Similarly, in the fields of special education even live longer); are more helpful; and cope
and rehabilitation, systems have also been better with stress and trauma (Lyubomirsky,
established that emphasize disability and focus King, & Diener, 2005). Research also shows that
on deficits as opposed to assets or strengths. happy people nurture and enjoy their social
However, recently, a shift has occurred in the relationships, are comfortable in expressing
way we think about life and work for people with gratitude, are often the first to help others, are
intellectual and developmental disabilities. Posi- optimistic about the future, live in the present
tive psychology emphasizes traits such as moment, and are committed to meaningful goals
well-being, optimism and perseverance, satis- (Lyubomirsky, 2001; Diener, Suh, Lucas, &
faction and interpersonal skills, and happiness Smith, 1999; Diener & Lucas, 1999). These
22 Supported and Customized Employment 331

findings are important for employers because sense of purpose ultimately provides people with
businesses with employees who have high levels goals that guide action and promote well-being
of employee happiness tend to report greater (Baumeister & Vohs, 2002).
customer satisfaction and loyalty to the business, Pleasure, engagement, and meaning can also
higher levels of productivity, and lower turnover be used to enhance happiness and well-being
rates (Keyes & Magyar-Moe, 2003). As Confu- relative to work activities and outcomes. Work
cius stated, “Choose a job you love, and you will has the potential to enable people to engage in
never have to work a day in your life.” meaningful activities that build on their talents
and strengths, focus on interests and improve and
develop new skills. The Gallup Organization has
Well-Being found that using your strengths leads to improved
health and wellness outcomes (Sorenson, 2014).
Well-being is often used interchangeably with The more hours each day that we can use our
happiness. According to Linley and Joseph strengths to do what we do and like best, the less
(2004), well-being differs from happiness and likely we are to experience worry, stress, anger,
can be understood as “the sum of life satisfaction sadness, or physical pain during the day
plus positive affect minus negative affect” (p. 5). (Sorenson, 2014). Research has shown that the
Sheldon and Lyubomirsky (2004) suggest that way to influence happiness is to make connec-
happiness and well-being both are influenced by tions with the people around you by creating new
three elements: (1) pleasure (or positive emotion); and strengthening old relationships (Ryan &
(2) engagement; and (3) meaning. Each of these Deci, 2001; Seligman, 2011) which can occur in
elements can be enhanced, ultimately improving work environments and activities. According to
happiness and well-being. According to Sheldon the research on happiness, our moods are con-
and Lyubomirsky (2004), we can increase our tagious and can enhance our social relationships
positive emotion about the past by fostering and promote happiness (Enticott, Johnston,
gratitude and forgiveness; the present, by valuing Herring, Hoy, & Fitzgerald, 2008; Rizzolatti &
and practicing mindfulness; and the future, by Craighero, 2004).
building hope and optimism. In addition to cul-
tivating positive emotions, such as happiness,
well-being also involves engagement or partici- Social Capital
pating in activities that are interesting, also
known as a state of “flow” (Csikszentmihalyi, “Fifty years of working in a medical model on
1990). Flow transforms important tasks into personal weakness and on the damaged brain has
interesting activities which may lead to long-term left the mental health professions ill equipped to
well-being. Flow does this by promoting the use do effective prevention. We need massive
of positive resources such as building on talents, research on human strength and virtue”
developing interests, and improving skills. Other (Seligman, 1998, p. 2). Social relationships are
benefits of flow include building psychological one of the strongest correlates of positive emo-
capital, experiencing positive emotions (Peterson, tions, which relates directly to social capital.
2006), and cultivating persistence (Nakamura & Many research studies have found a strong rela-
Csikszentmihalyi, 2002). The final component to tionship between social relationships and happi-
happiness and well-being is meaning. Research- ness (Bradburn, 1969; Diener & Seligman, 2002;
ers have suggested that finding meaning in life is Myers, 1999). Work is tied directly to social
important to the well-being of a person (e.g., capital—it can be where we meet our friends and
Frankl, 1992; Steger, Kashdan, Sullivan, & significant others; where we learn to be a friend
Lorentz, 2008). Meaning allows people to and become a friend. Social capital is tied to
develop positive social relationships and connect people getting jobs, finding others to live with,
to a purpose in their lives (Seligman, 2002). This finding transportation, and being respectful, kind,
332 W. Parent-Johnson and L. Owens

and helpful. When people increase their social development of interventions that emphasize
capital, they advance and achieve more attainable goals aligned with a person’s compe-
(Condeluci, 2008). tencies as opposed to an emphasis on optimal
Developing social capital allows a person to performance. Further, the importance of setting
actively participate in their networks and legit- positive goals that build on strengths and talents,
imizes their access to those networks. For rather than focusing on avoiding problems and
example, a person who is engaged in their challenges, has been noted (Masten, 2011). The
community is connected to other people and resiliency model moves beyond the medical
businesses that can lead to a job contact and model and begins to look at a person-centered
employment, the primary way we all enter the approach to supports and services. The focus is
labor market. Similarly, once a person becomes on abilities and what can happen with appropri-
employed, the opportunity to expand their net- ate supports rather than focusing on “fixing” the
work increases through new and additional person or problem. An emphasis on resilience
acquaintances and relationships which in turn shifts the focus from deficit-focused orientations
opens new doors. Building social capital accrues toward models centered on positive goals, pro-
benefits that extend beyond the person to all moting protective factors, and adaptive capacities
people in the network. (Masten, 2011).
The same benefits of social networks for all Researchers have found that resilience can be
people are also benefits for people with intel- learned and developed by taking care of yourself,
lectual and developmental disabilities. And, the having optimism and perspective, focusing on
positive impacts of having a person with an strengths, helping others, and building positivity
intellectual and developmental disability as part (Happiness Institute, 2013). Resiliency and social
of one’s social network benefit all members of capital may have positive effects on both per-
that network. It is not uncommon for businesses formance and work attitudes. Using a resilience
that hire people with intellectual and develop- framework can be growth-oriented and informa-
mental disabilities to report an overall positive tive and enable the implementation of positive
influence on the workplace and the other psychology in practice with people with intel-
employees such as improved morale and team- lectual and developmental disabilities.
work, and increased customer loyalty (Siperstien,
Romano, Mohler, & Parker, 2006).
Work and People with Intellectual
and Developmental Disabilities
Resiliency
Employment is a critical outcome for people with
Positive psychology emphasizes the study of intellectual and developmental disabilities and
human strength and virtue with the goal to their families. For more than two decades, one of
understand and facilitate positive developmental the principal goals of disability policy in the
outcomes (Seligman & Csikszentmihalyi, 2000). USA has been to improve employment oppor-
A resilience framework offers a powerful tool to tunities for young people with disabilities as they
help people realize the goals of positive psy- exit secondary education programs (Johnson,
chology under situations of adversity. Resiliency 2009). Supported employment is based on the
emphasizes the power of strengths when facing principle that people with complex disabilities
adversity. Resiliency has long been important to have the right to be employed in community
consider when supporting people with disabili- businesses where they can earn comparable
ties. In contrast to traditional medical models that wages, work side-by-side with coworkers with or
seek to eliminate disease or pain, resilience without disabilities, and experience all of the
models focus on promoting health and well- same benefits as other employees of the com-
being. Research on resiliency has led to the pany. This idea has been referred to as
22 Supported and Customized Employment 333

“Employment First.” Supported and customized person to obtain competitive employment. Core
employment models assist people with complex principles include the following: identifying
disabilities by providing individualized supports business needs, identifying employment condi-
that enable them to choose the kind of job they tions benefiting the individual and employer, and
want and to become successful members of the engaging in job exploration to recognize the
workforce. person’s strengths and assets. Supported and
Employment First and supported and cus- customized employment models can be used
tomized employment are similar concepts. The with any person with a disability and bypass
values revolve around these eight areas: (1) the comparisons of applicants made through com-
presumption of employment, (2) the presumption petitive hiring processes, and facilitate natural
of integrated employment—on the payroll of relationships, supports, and training.
community-based employers, working alongside The foundation of supported employment is
non-disabled coworkers, (3) control and power of on the strengths and talents of the person with an
supports—building social capital, (4) capabilities intellectual or developmental disability. It is
and capacities—building on strengths and turn- based on the idea that there is no “job readiness”
ing deficits into assets, (5) commensurate wages and that there is a job for everyone who wants a
and benefits, (6) developing and maintaining job. Supported employment further addresses the
relationships, (7) participating in the community, idea of strengths, passions and interests. The
and (8) systems or organizational change. All of assessment or person-centered planning process
these directly relate to positive psychology and identifies what makes the person happy—what is
how we can support people with intellectual and their passion in life and how do we build on that
developmental disabilities in creating a mean- passion? Focusing on an individual’s strengths
ingful life and career (Brooke, Inge, Armstrong, and identifying ways that things that had previ-
& Wehman, 1997). ously been considered deficits can be reframed as
Supported employment is paid employment in assets are a critical component in supported
an integrated work setting, with ongoing sup- employment.
ports and services. Supported employment is Unfortunately, despite the evidence support-
often used to enable people with severe disabil- ing supported and customized employment, the
ities to obtain competitive employment, particu- majority of people with intellectual and devel-
larly when competitive employment has not been opmental disabilities are still relegated to segre-
considered a possible outcome because of the gated services; many people with intellectual and
complexity of their support needs (Wehman developmental disabilities are unemployed or
2012). Customized employment strategies result underemployed. Most communities have no or
in individually designed services, supports, and very limited public transportation options, par-
jobs negotiated to fit the needs of a specific job ticularly in rural areas. And, without engagement
seeker or employee. These strategies may include in employment activities, particularly in early
aspects of other employment approaches, such as adulthood, social networks and capital decline,
individualized person-centered assessment, sup- leading to social isolation. Considering strategies
ported entrepreneurship services, microenter- related to promoting happiness, well-being,
prises or small businesses, individualized job social capital, and resiliency emerging from
development, job carving, and restructuring positive psychology can further enhance support
(Riesen, Morgan, & Griffin, 2015). Supported and customized employment supports and enable
and customized employment models are similar the achievement of valued outcomes related to
in that they are individualized, not group-based, employment as well as positive psychology,
and focus on personal preferences, values, and including: (1) rising to life’s challenges, making
visions, not traditional vocational evaluations/ the most of setbacks and adversity, (2) engaging
assessments. They are, however, approaches that and relating to other people, (3) finding
focus on creating the supports needed for each fulfillment in creativity and productivity, and
334 W. Parent-Johnson and L. Owens

(4) looking beyond oneself and help others to about the future lives of people with intellectual
find lasting satisfaction, and wisdom (Keyes & and developmental disabilities, to believe that
Haidt, 2003). Work gives people with intellectual people can and should work in the community
and developmental disabilities the same oppor- and making meaningful contributions. In sup-
tunities as the general population to take risks, ported employment, this is known as a “job
learn from experience, make choices, and influ- match” where the job seeker’s abilities are mat-
ence the happiness in their lives. ched with the needs of a business, and the indi-
As the field of positive psychology has vidual’s strengths and passions are used to build
focused more on looking at what works instead their skill on the job. In supporting employment
of what does not, increased attention has focused outcomes, the role of strengths and talents and
on the benefits of strengths identification and building on these strengths and talents cannot be
development, which directly relates to supported underestimated.
employment. Research has shown that the iden-
tification of strengths is connected to greater
work satisfaction, engagement, and increased Possibilities for People
productivity. People grow more by focusing on with Disabilities
strengths rather than remediating weaknesses
(Niemiec, 2014). Focusing on strengths can be All too often the focus when considering
energizing and enhance performance. Did you employment for people with intellectual and
ever notice yourself involved in something where developmental disabilities have change have to
you lost track of time because you were so has been on what a person cannot do. Statements
engaged? That is an indication that you were may be made about how the person cannot
using one or more of your strengths. Strengths communicate verbally when you ask a question.
that are energizing align with your values. People Or that they have difficulty sitting still or par-
who use their strengths daily are six times more ticipating in the activities that the job currently
likely to be engaged on the job, according to requires. But, such a focus leads to deficit-based
research by Gallup (Sorenson, 2014), and are less thinking and questions such as, How could this
likely to experience stress or anxiety. The results person ever work?, What employer would hire
of this research strongly indicate that people who them?, and What recommendations can I make?
regularly use their strengths are more engaged However, research and best practice in positive
and happier at work. Similar studies have found psychology and supported and customized
the additional benefit of lower employee turn- employment suggest the power of reframing the
over. Assessment or discovery strategies within question to ask: What would this person like to
supported and customized employment are do?, What are their passions and interests?,
designed to get to know the person and identify and What kind of support would help to make
his/her skills, interests, preferences, and passions them successful? Beginning with these questions,
to facilitate employment decisions that utilize rather than deficit-based questions, can signifi-
personal strengths and promote happiness at cantly change the conversation and outcome.
work (Brooke et al., 1997; Callahan, n.d.). Becoming familiar with what is possible can
People gain more when they build on their be an eye-opening experience for professionals
talents, than when they make efforts to improve who provide change provides to provides support
their areas of weakness (Happiness Institute, change supports to supports people with intel-
2013). The best way for people to grow and lectual and developmental disabilities. A critical
develop is to identify how they most naturally part of the job development process for all
think, feel, and behave—their talents—and then members of the support team can be learning
build on those talents to create strengths. As where other people with intellectual and devel-
practitioners, it is critical to maintain optimism opmental disabilities work and how they became
22 Supported and Customized Employment 335

successfully employed. Meeting with the local

vocational rehabilitation office, community and the skills of Justin, using an adapted
support provider organization, and supported mop attached to his wheelchair. He cleans
employment providers can provide information all five basketball courts during peak times.
about resources and supports that are available. He also collects stranded basketballs and
Often, arrangements can be made to visit a job other miscellaneous tasks.
site and observe firsthand the contributions of Box 2. William’s Employment Experi-
workers with disabilities. Other resources that ences
can be of assistance include school personnel William is a young man with Asperger’s
(e.g., teacher, transition coordinator), case man- syndrome. His support team conducted a
agers, benefits planners, independent living positive personal profile and identified
organizations, assistive technology specialists, many of his interests, in particular, his
and self-advocacy groups (e.g., People First, enjoyment of history. William enjoyed
Self-Advocates Becoming Empowered). Boxes talking about the various wars and loved
1, 2, and 3 provide illustrations of how building the uniforms and hats from various wars.
on strengths and using supported and customized He worked with his employment consul-
employment strategies can lead to enhanced tant to conduct an informational interview
employment outcomes. at a local military surplus store. The man-
ager was so intrigued with William’s
knowledge about history (which was his
Box 1. Justin’s Employment
passion too) that he agreed to a work
Experiences
experience. After the work experience,
Justin is a young man with cerebral palsy
William was hired to stock and assist
who uses an electric wheelchair. He gets
customers.
his message across, but his verbal language
can be difficult to understand for some. Box 3. Megan’s Employment
During his last year of high school, he had Experiences
a person-centered planning transition Megan is a young woman with an intel-
meeting. At that meeting, Justin invited his lectual disability. She is bright and pleas-
family (mother, father, brothers, and sis- ant, and when asked what her career goals
ters), his teacher, and a friend. It was clear were she stated, “I want to make Abby-
that Justin was interested in sports—he was cakes!” She loved baking and thought that
wearing a Milwaukee Bucks shirt for the someday she could run her own business
meeting and on the tray of his wheelchair, making fancy cupcakes. She obtained a
were decals and information about all the work experience at a “gourmet”
Wisconsin sports teams. Justin ran the restaurant/bakery—washing the dishes.
meeting with the support of a facilitator. But her career was only beginning. Megan
Justin’s strengths, interests, challenges, and washed the dishes and just before the work
support needs were discussed, and an experience ended, the bakery got a big
action plan was developed for employ- cupcake contract with a local grocery
ment. This led to the use of customized chain. There was a sudden need to begin
employment strategies to create a position packaging large amounts of the product on
for Justin to work as the “human Zamboni” a weekly basis. Megan was hired to pack-
at Marquette University. After conducting age in addition to the dishes and did it well.
an informational interview with the Stu- These days, she is just one of the crew, no
dent Recreation Center, a position was job coach, and has started to deliver meals
developed based on the needs of Marquette to the customers at the tables.
336 W. Parent-Johnson and L. Owens

Regardless of your role, you can play an resources to share with all members of the
integral part in influencing employment out- team.
comes for individuals with intellectual and
developmental disabilities. Several strategies
have proven to be helpful in those efforts. Conclusion
First, get to know the person as a person and
explore his or her and the family’s dream. The Integrated employment is a critical and valued out-
supports you provide and the recommendations come for people with intellectual and developmental
you make are helpful when congruent with and disabilities that can lead to enhanced happiness,
supportive of these long-term goals. Second, well-being, social capital, and resiliency, all key
promote skills and experiences important for constructs in the field of positive psychology.
employment and a quality life engaged in one’s Having a purpose in life, which a career can con-
community. During your time together, provide tribute to, enables all people, including people with
opportunities to practice skills, such as intellectual and developmental disabilities, to feel
answering questions and making decisions, and they are part of something meaningful which
suggest other situations and environments enhances happiness and well-being. Through
where similar learning experiences can occur. employment, meaningful relationships can be
Third, identify the supports that the person uses achieved, and as experiences are shared, social
in everyday life and encourage their involve- capital can be built which can contribute to future
ment during the appointment or services that outcomes. Employment can also contribute to
you provide. Similarly, consider the use of enhanced ability to navigate challenges that emerge
supports to enhance an individual’s active and perceptions of control over one’s future path,
participation and offer ideas to insure they are enhancing resiliency. Overall, employment both
aware of additional options that might be contributes to positive psychological outcomes and
available. Often, participation is determined by is enhanced by greater happiness, well-being, social
a person’s ability to complete the task inde- capital, and resiliency. Promoting supported and
pendently overlooking the important point of customized employment for people with intellectual
focusing on the outcome and the realization and developmental disabilities by integrating best
that we all rely on supports within our own practices related to employment supports and posi-
lives. Fourth, prepare concise person-centered tive psychological interventions is a natural fit that
summaries that highlight these positive aspects can lead to enhanced outcomes in multiple domains.
of the person in addition to the technical
information you are providing. Other members Acknowledgements The development of this chapter was
funded in part by the Administration on Intellectual and
of the team can benefit from the introduction Developmental Disabilities, Administration for Community
you provide describing who this person is, Living of the U.S. Department of Health and Human Ser-
what their strengths and passions are, the skills vices (Grant Number: 90-DD-0704-02-00) and by the
they exhibited during their time with you, the Heartland Genetics Services Collaborative, Genetic Services
Branch of the Maternal and Child Health Bureau, Health
types of supports that facilitated their partici- Resources and Services Administration (Grant Number:
pation, and your recommendations for achiev- H46MC24089). The development of this chapter was sup-
ing their employment and life goals. Finally, ported in part by funding from the … KEEP EVERYTHING
learn about best practices and the outcomes AS IS BETWEEN THESE TWO CHANGES/ADDITIONS
… Health Reseources and Services Administration, U.S.
that can be achieved and the state, national, Department of Health and Human Services (HHS) (Grant
and local resources that are available. This Number: H46MC24089). However, the contents of this
information can be invaluable to inform your paper do not necessarily represent the policy of the U.S.
own decision making as well as provide useful Department of HHS and you should not assume endorese-
ment by the federal government.
22 Supported and Customized Employment 337

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Author Biographies
Wendy Parent-Johnson, PhD, CRC, CESP is Professor, high school inclusion and transition from school to work. She
Department of Pediatrics, and Executive Director of the is also the President of TransCen, Inc. an organization based
Center for Disabilities, at the Sanford School of Medicine, in Rockville, Maryland that provides training and technical
University of South Dakota. She has thirty five years of assistance to improve educational and employment outcomes
experience in the areas of supported and customized for individuals with disabilities. Laura is the founder of
employment, transition from school to work, and Employ- Creative Employment Opportunities, Inc. (CEO), an
ment First policy and practice. More recently, her research employment agency for individuals with disabilities (estab-
and teaching has focused on health care transition, health lished in 1991) and ArtWorks for Milwaukee (established in
disparities, interdisciplinary health science education, and the 2000), a nonprofit organization focusing on apprenticeships in
integration of health and employment. She is the Editor of the the arts, both in Milwaukee, WI. She also served as the
Journal of Rehabilitation. Executive Director of APSE, a national organization focusing
on the advancement of integrated employment for citizens
Laura Owens, PhD, CESP is an Associate Professor at the
with disabilities based in Washington, DC from 2008–2014.
University of Wisconsin–Milwaukee in the department of
Exceptional Education where she teaches courses focusing on
 Retirement
23
Roger J. Stancliffe, Michelle Brotherton, Kate O’Loughlin
and Nathan Wilson

interventions that have many of the characteris-

Introduction
tics referred to by Shogren et al. (2006).
Following the Introduction, this chapter deals
There is a growing trend in research in the field
with three main areas of content: (a) mainstream
of intellectual disability that is compatible with
retirement research, (b) retirement research with
positive psychology and self-determination; that
people with intellectual disability, and (c) re-
is, a focus on ‘the strengths and capabilities of
search to practice. The chapter’s authors are all
the person in the context of typical environments
from Australia and this reality is reflected in the
with a priority on natural supports’ (Shogren,
content by a notable focus on Australian research
Wehmeyer, Pressgrove, & Lopez, 2006, p. 338).
and practice. No doubt this emphasis is a result
In examining retirement research in this chapter,
of our familiarity with this work, but it is also
we note that the limited available research on
due to relatively little attention being given to
people with intellectual and developmental dis-
retirement of people with intellectual disability
abilities suggests a lack of self-determination
by researchers in other countries.
regarding retirement decisions and a reliance on
We are aware that many readers may not be
segregated environments in retirement, especially
familiar with Australian policies and practices
for workers in sheltered employment. However,
regarding disability employment services, the
later in this chapter, in the section on research to
disability support pension, retirement savings
practice, we also present examples of retirement
and the like, so we will provide brief details
about these issues where needed. It is important
to understand these contextual factors because
R.J. Stancliffe (&)
M. Brotherton they could influence the timing and manner of
Centre for Disability Research and Policy,
retirement, as well as post-retirement adjustment.
University of Sydney, Cumberland Campus,
Lidcombe 2141, NSW, Australia Different contextual factors in other countries
e-mail: [email protected] may affect retirement in different ways. For
M. Brotherton example, per-person government funding for
e-mail: [email protected] sheltered employment in Australia currently
K. O’Loughlin requires employees with disability to work a
Ageing, Work and Health Research Unit, University minimum of eight hours per week. So long as
of Sydney, Cumberland Campus, Lidcombe 2141, that minimum is met the employment provider is
NSW, Australia
eligible for the full amount of government
e-mail: [email protected]
funding through the Employment Assistance Fee
N. Wilson
(Australian Government, Department of Social
School of Nursing and Midwifery, Western Sydney
University, Richmond, New South Wales, Australia Services, 2015). Most workers in sheltered
e-mail: [email protected] employment work far more than eight hours per

© Springer International Publishing AG 2017 339

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_23
340 R.J. Stancliffe et al.

week. This funding arrangement means that spend decades in retirement, so this phase of life
sheltered employment providers experience no provides sustained opportunities for personal
reduction in government funding if an employee growth, positive relationships and enjoying a
cuts down their weekly work hours from, say, 24 good life. Likewise, people with intellectual
to 16 h as the person begins to develop a disability are living longer and many also face an
retirement lifestyle and gradually transitions to extended retirement phase of their life (Bittles
retirement. Therefore, the employer is usually et al., 2002; Patja, Iivanainen, Vesala, Osanen, &
willing to accommodate reductions in weekly Ruoppila 2000).
work hours to enable partial retirement. Indeed, Demographic factors also make retirement a
this was the experience in the Transition to key issue for people with intellectual and devel-
Retirement project described in the Research to opmental disabilities and the services that sup-
Practice section of this chapter. Employers in port them. For example, the 20,000 Australians
other countries where government funding for with disability working in sheltered employment
sheltered employment is proportional to hours are an aging workforce (McDermott, Edwards,
worked may be more reluctant to approve such Abelló, & Katz, 2009; Wilson, Stancliffe, Bigby,
arrangements, so a gradual transition to retire- Balandin, & Craig, 2010) with large and
ment may be more difficult to achieve. increasing numbers approaching or reaching
retirement age. Given that around 75% of this
workforce has intellectual disability (McDermott
What Is Retirement? et al., 2009) this reality has major implications
for the intellectual disability service system,
In this chapter, we interpret retirement to mean which will need to respond on a much larger
withdrawal from paid work. As opposed to scale and with greater flexibility around both
unemployment (seeking work but temporarily living and working arrangements, as well as with
not being in paid employment), retirement is support for participation in retirement. The effect
usually permanent. Retirement does not preclude of these demographic factors is magnified by the
unpaid ‘work’ such as volunteering (Fesko, Hall, lack of retirement planning, services, and policy,
Quinlan, & Jockell, 2012). Regrettably, many and results in ad hoc responses for individuals
people with intellectual disability have never had confronted with imminent retirement (McDer-
the opportunity to do paid work. People who mott et al., 2009; Wilson et al., 2010).
have never worked for pay cannot retire under Finally, older adults with intellectual disabil-
this definition, so their situation falls outside this ity themselves state that they want to continue to
chapter’s scope. We will include all forms of participate in their community and be active and
paid work by people with intellectual disability – productive in older age (Buys et al., 2008). Older
both mainstream and sheltered employment. people with intellectual disability deserve to
Why is retirement important? Throughout experience active aging like the rest of the
the twentieth century, life expectancy in western community (Wilson et al., 2010). In recognition
countries has increased steadily. Today, in the of these and other issues, retirement is one focus
USA, UK, and Australia, average life expectancy of key national research agendas. For example, a
ranges from the high 70s to mid-80s (World focus on retirement was one of four USA
Health Organization, 2016). In these countries, national goals for research, practice, and policy
the notional ‘retirement age’ is around the identified recently in relation to aging (Hahn,
mid-60s (i.e., age when retirement savings and/or Fox, & Janicki, 2015). Before examining what is
government benefits typically become available), known about retirement by people with intellec-
but the actual average retirement age of the tual disability, we will briefly look at mainstream
general population in Australia, for example, is retirement research and issues to provide a con-
actually in the 50s (Australian Bureau of Statis- text for understanding retirement by people with
tics, 2013). Therefore, most people can expect to intellectual disability.
23 Retirement 341

Retirement Among People caregiving responsibilities. These are often

in the General Community: referred to as ‘push’ and ‘pull’ factors (De Preter,
Key Issues and Findings Van Looy & Mortelmans, 2013; Ebbinghaus,
2006) associated with decision-making around
The concept of retirement is historically associ- retirement and whether it is planned for, volun-
ated with the industrial revolution and the chan- tary and a gradual process, or unplanned and
ges that occurred in work and employment involuntary. The pull factors denote more positive
patterns at that time. However, it has taken on a factors shaping the decision to retire (e.g., finan-
new meaning in the context of population aging cial security, increased family and leisure time)
and increased life expectancy, particularly and convey a sense of personal choice and control
around planning for and transitioning to retire- over the transition period. In contrast, the push
ment, as well as the adjustment to, and experi- factors are often associated with an early or abrupt
ences in retirement for the post WWII baby exit from paid work and shaped by more negative
boom cohorts now reaching mid to later life. aspects, such as chronic health conditions or
Retirement is a key milestone in the lives of workplace experiences (e.g., discrimination,
people as they leave behind the social and eco- redundancy). Therefore, it is important to note
nomic structure of working life (Kim & Moen, that not everyone can choose the timing of their
2002). When people leave paid work they forego retirement and that there are variations in the
a regular income and move away from the social degree of choice and control based on
networks built up in the workplace. They also socio-economic and gender differences (Marmot,
leave behind the routine of the working day and 2005). Those who have had an interrupted work
the sense of identity and status associated with history (e.g., women with child-care responsibil-
being an employee (van Solinge & Henken, ities) and those who have had a more marginal
2008). employment status (part-time, casual, semi-
Retirement age. The notion of an official skilled workers) may have reduced retirement
retirement age in most developed countries is income and therefore need to remain in paid work
associated with the age at which one can access a for longer (Raymo, Warren, Sweeney, Hauser, &
retirement or age pension; traditionally it has Ho, 2011; O’Loughlin et al., 2010).
been between 60 and 65 years. However, this There is extensive research examining the
age varies across countries depending on the type timing of, intention to, and transition patterns
of social welfare and retirement income system related to retirement. What this shows is that
in place. Data for OECD countries show that the while many are able to retire on their own terms,
average retirement age in 2012 was 64.2 years involuntary retirement is also a common experi-
for men and 63.1 years for women (OECD, ence (Noone, O’Loughlin, & Kendig, 2013).
2013); however, the data also show that in 22 Reasons for this include health status (Majeed,
OECD countries the actual exit age was lower Forder, & Byles, 2014), family caregiving
than the official retirement age. In Australia, for (Kröger & Yeandle, 2013), ageist attitudes and
example, retirement from the mainstream labor discrimination (O’Loughlin & Kendig, 2017),
force for people 45 years and over averaged and labor market supply and demand (Ebbing-
53.8 years in 2012–2013 (men 58.5 years, haus, 2006).
women 50.0 years) (Australian Bureau of The key message is that planning for, and
Statistics, 2013). having some control over the timing and transi-
Voluntary and involuntary retirement. tion process to retirement not only facilitate
Although countries may have a retirement age longer workforce participation - a policy goal of
linked to their pension system, the decision to governments – but also have a greater positive
remain in or leave paid work may be influenced impact on psychological and social well-being in
by factors including social and financial circum- later life (de Vaus, Wells, Kendig, & Quine,
stances, poor health or injury, discrimination, and 2007; Noone, Stephens, & Alpass, 2009).
342 R.J. Stancliffe et al.

Self-evidently, these findings are in accord with engaged, as these are known to influence the
the tenets of positive psychology. level of retirement satisfaction (van Solinge &
Delayed retirement. Governments globally Henken, 2008).
are contending with the economic and social Views about retirement. Retirement is a
challenges thrown up by population aging and major turning point in the life course and, for
increased longevity by introducing policies some, signifies ‘official’ entry to older age.
focusing on financial preparedness for, and Research shows that many people have mixed
income security in retirement, maintaining feelings about permanently leaving paid work,
health, well-being and quality of life, and living particularly when it is seen as being ‘pensioned
and support arrangements as people live to off;’ that is, you are no longer considered as
increasingly older ages (World Health Organi- contributing to economic and social life. What
zation, 2016). Across the developed world, the people hope for is to have the financial and
major policy response has been twofold in an personal resources, including health, to retire
effort to provide income security in retirement from paid work and maintain their independence
and sustainable pension schemes: (a) encourage and a sense of purpose (Windsor et al., 2015),
mature-age workers to delay retirement and stay and to participate and contribute to family and
in paid work for longer, and (b) increase the social life (Kendig, Loh, O’Loughlin, Byles, &
pension eligibility age (Chomik & Piggott, 2012; Nazroo, 2015).
OECD, 2013). While there are possible eco- Mainstream research based on a life course
nomic and health benefits to extending working perspective shows that across all age categories,
lives from an individual and societal point of including retirement age, those with limited
view (Noone et al., 2013), as outlined previously, social support, poor health, or restricted incomes
not everyone has control over the decision to have lower levels of subjective well-being
retire. Those who are financially secure and have (Dannefer & Settersten, 2010). What we need
planned for retirement may want to leave paid to understand however is that people in varying
work at an earlier age, while those with health circumstances, including those in retirement and
issues may be forced to leave and those who later life, do have the capacity to maintain or
have had an interrupted work history may have improve their subjective quality of life if they
no choice but to remain in employment. have appropriate personal and social support
Planning for retirement. With increased life (Cummins, 2014).
expectancy and therefore an extended period in Policies about retirement, active aging, and
retirement, pre-retirement planning has become a support arrangements. Current theoretical and
focus in the mainstream retirement literature as policy frameworks applied in most developed
well as in public policy discussions around countries around aging use positive discourses
healthy and productive aging (Adams & Rau, (productive aging, successful aging, aging well)
2011; Noone et al., 2013). Although much of the to focus attention on the need for people to
attention has been around financial preparedness maintain their independence, health and
to ensure income security into older age, plan- well-being by remaining physically active and
ning is also expected to include health, lifestyle socially engaged (Kendig, 2017; Rowe & Kahn,
and psychosocial issues to assist in adjusting to 2015). Within these frameworks, there is an
retirement and coping with change (Noone, Ste- expectation by policy makers that individuals in
phens, & Alpass, 2010; 2009; Wong & Earl, their retirement will engage in activities and
2009). As noted, in retirement people move away behaviors to maintain physical function and
from the routine of work and their sense of cognitive capacities so that they can remain liv-
identity and status associated with being a ing in and socially engaged with the community.
worker, so they need to prepare for new social Central to this is the concept of aging in place;
roles (e.g., volunteering, grandparenting), as well that is, as people age they will be supported to
as remaining physically active and socially remain living in the community, as this is the
23 Retirement 343

preferred option of older people, their families, people in the general community. As will be seen
and governments. While this policy approach is later in the chapter, this issue appears to have
seen to provide a more cost-effective alternative lower priority among many workers with intel-
for all stakeholders, it also offers the opportunity lectual disability. The reality of very low wages
for the development of age-friendly communities in sheltered employment provides little or no
(Kendig, 2017) that support and facilitate inter- opportunity for saving. Moreover, in Australia
actions at the personal and public level. most people in sheltered employment earn less
Although positive discourses predominate, than the monthly earnings threshold that man-
few studies specifically refer to a positive psy- dates that employers pay into the worker’s
chology framework. One example is Asebedo retirement savings (superannuation) account.
and Seay (2014), who evaluated the association When discussing workers in sheltered employ-
of retirement satisfaction with the five dimen- ment, McDermott and Edwards (2012) noted:
sions of Seligman’s (2012) PERMA framework ‘The majority of workers interviewed will retire
of well-being (Positive emotions; Engagement; with no superannuation even though they have
Positive Relationships; Meaning, and Accom- worked for most of their lives’ (p. 428).
plishment). Individuals who reported higher The financial situation for people with intel-
scores on ‘positive emotion,’ ‘positive relation- lectual disability who work in mainstream
ships’ (support from family), ‘meaning,’ and employment is somewhat different (Brotherton,
‘accomplishment’ also reported higher levels of Stancliffe, Wilson, & O’Loughlin, 2016a). First,
retirement satisfaction (Asebedo & Seay, 2014). they earn more, so the loss of wage income at
retirement may be a more influential factor in
deciding when to retire. Second, in Australia, the
Retirement and People earnings of workers with intellectual disability in
with Intellectual Disability mainstream employment typically do exceed the
income threshold meaning that employers are
Many of the research findings about retirement by required to pay into the worker’s retirement
members of the general community noted above savings (superannuation) account providing
will likely also apply to workers with intellectual some savings to draw on when they retire. Even
disability. Factors such as a longer life span, the so, workers with intellectual disability are often
need for retirement planning, push and pull fac- poor with limited or no retirement savings thus
tors that influence retirement decisions, and the limiting housing, leisure and other options in
importance of choice and control of the timing of retirement.
and transition to retirement all likely also affect It is notable that legislative attention has been
people with intellectual disability. However, as given recently in the USA to enabling people
will be seen, to date there has been little research with disability to save for future needs related to
involving people with intellectual disability to their disability under the Achieving a Better Life
test the applicability of these factors. Moreover, Experience, or ABLE, Act (H.R.647, 2014).
there are some important differences in the work Although not specifically targeting retirement,
situation and life circumstances of workers with the Act allows for tax-free savings accounts
intellectual disability that may also have impor- which are exempt from the $2000 cap on other
tant effects on retirement. savings that affect eligibility for Medicaid and
Supplemental Security Income (SSI) benefits.
Eligibility for the Australian disability sup-
Key Differences for People port pension. As noted by Brotherton et al.
with Intellectual Disability (2016a), age of access to a government pension
differs markedly for people with and without
As noted, a focus on financial preparedness for intellectual disability, a fact that may influence
retirement is a central consideration for most decisions about the timing of retirement. In
344 R.J. Stancliffe et al.

Australia, currently, you must be 65 to be eligible employment for this group. For example, a recent
for the age pension (Australian Government, major review of research on employment and
Department of Human Services, 2016). This fact is economic self-sufficiency made no mention at all
known to influence the timing of retirement among of retirement, retirement planning or retirement
the general population. By contrast, Australians savings (Nord, Luecking, Mank, Kiernan, &
with an IQ less than 70 are entitled to the disability Wray, 2013). Research in the area of mainstream
support pension (DSP) from the age of 16 work for people with intellectual disability con-
(Brotherton et al., 2016a; Department of Social tinues to focus on increasing employment par-
Services, 2014), which provides income and other ticipation (Griffin, Hammis, Geary, & Sullivan,
entitlements similar to the age pension. There is no 2008; Nord et al., 2013). The transition from
requirement that one must work to receive the school to work for people with intellectual dis-
DSP. Thus, retirees with intellectual disability ability has therefore received considerable
have a financial safety net that is not age depen- attention (Luecking & Luecking 2015; Wehman
dent. They do not need to wait for the ‘retirement et al. 2016), but much less is known about
age’ of 65 to be eligible for this pension, so access retirement.
to the age pension may be a less important factor in
decisions about when to retire than for other
Australians who are not DSP eligible. Understanding of and Views About
DSP recipients can work and earn wages while Retirement
still receiving a means-tested part-pension. Once
income exceeds the threshold (currently AU$81 Retirement is poorly understood by many people
per week), the pension is reduced by 50 cents for with intellectual disability. Most research on this
each dollar earned above the threshold. Likewise, topic has involved people in sheltered employ-
when wages cease the full amount of the pension ment, and it is only recently that investigations
is reinstated, thus partly offsetting a reduction in have begun to include individuals with intellec-
income due to retirement. tual disability working in mainstream employ-
On average, the life circumstances of older ment. Available research discussed below
people with intellectual disability differ from suggests that there may be differences in per-
those of the general community in that many ceptions of retirement by employment type, but
people with intellectual disability have no chil- this research is in its infancy and no direct
dren, so they do not have to pay for the needs of comparisons have yet been made. Nevertheless,
dependent children, nor do they have the given the important differences in the employ-
opportunity to take on the later-life role of ment circumstances of these two groups, we will
grandparents. Likewise, they usually do not have discuss them separately.
adult children to provide social and financial
support in retirement. Being poor has numerous Workers in Sheltered Employment
drawbacks, but it also means that most adults Attitudes about retirement. Australian research
with intellectual disability do not own their home indicates that many older people with intellectual
so do not have a mortgage to service that requires disability currently working in sheltered
continued income from paid work. employment tend to be negative about retirement
and focus on the perceived loss of both mean-
ingful activity and social connections (Buys
Research on Retirement by People et al., 2008; McDermott et al., 2009). As one
with Intellectual Disability person with intellectual disability put it: ‘You’re
sitting at home and you’ve nothing to do’ (Bigby,
Internationally, retirement by people with intel- Wilson, Balandin, & Stancliffe, 2011, p. 170).
lectual disability has received little research These workers also fear the loss of valued
attention, despite the substantial literature on workplace social relationships following
23 Retirement 345

retirement because these relationships are largely become more optimistic as a result of such
limited to their sheltered employment settings experiences, but this research did not measure
(Bigby et al., 2011; McDermott & Edwards, retirement expectations, so this issue remains
2012). unexamined. Likewise, the use of video-based
These negative attitudes were reinforced positive retirement role models in this Transition
because older people with intellectual disability to Retirement program (Stancliffe, Wilson,
had little insight into or knowledge of the range Gambin, Bigby, & Balandin, 2013b) could also
of activities available in retirement. Their quite contribute to more positive views of retirement,
limited ideas were based on familiar activities but this proposition also remains untested.
such as housework or watching television (Bigby Views about retirement finances. One
et al., 2011; McDermott & Edwards, 2012). intriguing feature of the Australian research
These views were further strengthened because about retirement is the relative absence of com-
family members and disability support staff also ment by people with disability in sheltered
saw retirement by people with intellectual dis- employment on finances in retirement and
ability as leading to a serious risk of inactivity retirement savings (Bigby et al., 2011; McDer-
(Bigby et al., 2011). mott & Edwards, 2012). A small number of
These rather negative attitudes about retire- individuals did mention the loss of wage income
ment may arise from a lack of education about in retirement or not being able to afford costlier
options in retirement, a failure to provide activities (e.g., travel) when retired. However,
appropriate pre-retirement planning, or a lack of most made no mention of financial issues and
positive role models. Such views can become there was no sense of the major focus on finan-
self-fulfilling, especially when family members cial planning for retirement, as is the case in the
and disability staff share this pessimistic outlook. general community (Noone et al., 2013).
For example, older workers in sheltered This finding may be associated with a variety
employment have expressed a wish to continue of factors that affect the person’s involvement
working as long as possible, even in the face of with their own finances or their income in
deteriorating health, to avoid the perceived retirement. These factors include more limited
boredom and loneliness of retirement (Bigby understanding by many people with intellectual
et al., 2011; McDermott & Edwards, 2012). disability of financial matters (Suto, Clare, Hol-
Consequently, one important task for research land, & Watson, 2005) and/or having one’s
and service provision is to support older workers finances managed by someone else (e.g., a family
to learn more about the range of positive options member); a lifetime of low income (including
for meaningful activity and social engagement in low wages in sheltered employment) such that
retirement, with the explicit aim of raising financial constraints in retirement simply repre-
expectations. Carter, Austin, and Trainor (2012) sent an unalterable reality; or, as we have noted,
reported that more positive expectations by par- the fact that Australians with intellectual dis-
ents about future work were linked with better ability continue to receive the disability support
post-school employment outcomes for young pension regardless of the age when they stop
adults with severe intellectual disability. We work (see Brotherton et al., 2016a), meaning that
know of no similar research related to retirement, retirement at any age in adulthood has the
so it is unknown what interventions may result in financial safety net of the disability pension.
more positive retirement expectations by people Views of people who have already retired
with intellectual disability and their families. from sheltered employment. McDermott and
Later in this chapter in the section on Edwards (2012) interviewed ten Australian
Research to Practice, we describe an intervention retirees who took part in pilot programs for
that resulted in positive retirement outcomes retired older workers with intellectual disability.
(Stancliffe, Bigby, Balandin, Wilson, & Craig, The activities offered included volunteering,
2015). Expectations about retirement may have walking or fishing and took place during what
346 R.J. Stancliffe et al.

previously had been working hours. Transporta- it as an opportunity to relax or to be free to spend
tion was provided for community access. In more time on leisure activities or socializing.
contrast with the negative views about retirement Most expected to retire when they were older
described previously by workers still working in and/or when they ‘had enough’ of work. A de-
sheltered employment, McDermott and Edwards cline in health or physical capacity to perform
reported that people who had retired and attended work tasks was the most common reason cited
these pilot retirement programs were much more that would determine when it was time to retire.
positive about life in retirement. Participants Consistent with views of people in sheltered
reported enjoying the activities and social con- employment, participants recognized that there
nections as well as the slower pace of life in was a need to keep active in retirement and the
retirement. However, such programs remain rare few who said they didn’t want to retire were
in Australia and elsewhere. primarily concerned with being bored. In dis-
By contrast, one participant in Bigby et al.’s cussing the social connections that they would
(2011) study returned to sheltered employment miss in retirement, it was not only work col-
after retiring because ‘I got bored stiff’ (p. 170). leagues that were mentioned but also
These divergent findings suggest that adjustment work-related interactions with members of the
in retirement is partly related to the availability of public, such as customers in retail or residents in
meaningful activity and social connections and an aged-care facility. Participants valued both the
the support needed for these outcomes to be conversational interaction and the opportunity to
achieved consistently. contribute through providing assistance to others.
Self-determination about retirement. Also evident was that participants viewed having
McDermott and Edwards (2012) found that older and maintaining a job in mainstream employ-
workers in sheltered employment were not ment as an accomplishment and showed pride in
making self-determined decisions about retire- achieving recognition of their years of service in
ment. These authors recommended that better their job. This finding suggests aiming for, or
information about retirement, greater flexibility achieving celebrated milestones such as 10 or
in service provision, the opportunity to try real 20 years’ service could be an important influence
retirement activities and support for on the timing of voluntary retirement for people
self-determination were all needed to address this with intellectual disability.
problem. Views about retirement finances. While
many managed their day-to-day spending
Workers in Mainstream Employment money, all participants relied on family members
We know of only one study (Brotherton, Stan- or paid disability support staff to assist with
cliffe, Wilson & O’Loughlin, 2016b) that directly financial decisions. Participants raised concerns
explored retirement and workers with intellectual about the financial ramifications of retirement,
disability in mainstream (integrated) employ- particularly those living independently and/or
ment. In this study, 18 participants with intel- relying on wages to pay bills. Many lacked
lectual disability, aged over 40 and currently understanding of disability pension adjustment
employed in a mainstream job were interviewed. for partial or full retirement whereby an increase
Consistent with previous research on sheltered in the pension partly offsets lost wage income.
employment, they had narrow views of the lei- Similarly, people knew of the existence of
sure options available to them. However, their superannuation (retirement savings through
perspectives on other retirement issues differed compulsory employer contributions) but were
from the views of workers in sheltered employ- not aware of the details. Exposure to colleagues
ment noted above. talking about retirement finances may be a factor
Attitudes about retirement. A key difference in their showing greater concern about retirement
was that workers in mainstream employment income than people in sheltered employment. For
were generally positive about retirement, seeing example, stories of non-disabled co-workers not
23 Retirement 347

having enough money to retire on were shared in outside of work (Forrester-Jones, Jones, Heason,
the interviews. & Di’Terlizzi, 2004). However, most research
Several other factors affected the perceived has shown that these workplace friendships are
financial impact of future retirement for largely limited to the mainstream work situation
Brotherton et al.’s (2016b) participants. Wages in (Jahoda, Kemp, Riddell, & Banks, 2008). Such
their mainstream jobs—minimum wages or findings suggest that these friendships likely are
above—were much higher than for sheltered lost on retirement, a factor that may influence
employment. Therefore, wage loss at retirement retirement decisions in a similar manner to
is much greater and may be more central to their workers with intellectual disability in sheltered
retirement decisions. In addition, a few workers employment as noted previously.
with intellectual disability have purchased their Part-time work. Part-time work predomi-
own home, meaning that they need to continue to nates for workers with intellectual disability in
earn enough to make mortgage repayments. mainstream jobs (Butterworth et al., 2015).
Travel issues. Travel was seen as a potential Therefore, these workers have time available for
barrier to participating in community leisure non-work activities and could be supported to
activities, with safety concerns about traveling to begin to develop a retirement lifestyle (e.g.,
unknown places or traveling at night on public volunteering, leisure, and social activities) while
transport. The commute to work was identified as still working, without the need to disrupt working
something that could become more difficult with hours. Indeed, Butterworth et al. (2015) found in
age and likely would affect the timing of retire- the USA that 46% of workers in mainstream jobs
ment. For some, traveling to and from work was also participate in a second (usually unpaid) day
viewed as an opportunity to socialize with fellow activity.
commuters. Job security. We could not locate compre-
These initial findings suggest that there may hensive data on job tenure by age cohorts for
be differences in views about retirement between people with intellectual disability. Available
people with intellectual disability in sheltered research does show poor retention rates within
versus mainstream employment. It seems possi- the first year of mainstream employment for
ble that these differences are directly related to people with intellectual disability. In Australia,
the differing workplace environments, peer only 44% of mainstream job placements for
groups, wages, and experiences. However, these people with intellectual disability lasted
are preliminary findings that require both repli- 6 months or more (Department of Employment,
cation and more direct comparison between these 2015). This report also identified large variation
two groups. At present research is silent on in retention outcomes between individual service
possible group differences in self-determination providers that support people with intellectual
about retirement and personal growth, positive disability to work in the mainstream workforce,
relationships and enjoyment of life in retirement. with 6-month retention rates ranging from 20 to
96%. Indeed, some employment support services
reported jobs lasting over 10 years (Galinovic,
Related Research About Mainstream 2014). One specialist intellectual disability ser-
Employment vice in Australia has reported an average job
tenure of 6.8 years (Tuckerman, 2015).
Social connections and leisure participation. Compared to sheltered employment, the nat-
There is a little evidence that mainstream ure of mainstream employment holds higher risk
employment enables some workers with intel- of job loss that may, in turn, prompt retirement in
lectual disability to make friends and socialize older workers with intellectual disability.
348 R.J. Stancliffe et al.

Retirement Age for People & Roush, 2008). As noted by Fesko et al. (2012,
with Intellectual Disability p. 504), “Rather than creating separate activities
for individuals with intellectual disability, it will
We know of no robust data on the age at which be necessary to work with existing programs to
workers with intellectual disability retire, ensure they are inclusive of all seniors, including
although some survey data suggests that they those with disabilities.” As shown in the sections
may retire quite young. Cross-sectional data on that follow, these more socially inclusive retire-
employment rates by age in the USA (Butter- ment options are now beginning to receive
worth et al., 2015, p. 41, Fig. 10) and Australia research attention. The projects described below
(Australian Government Department of Educa- warrant particular attention in a book on positive
tion, Employment and Workplace Relations, psychology because inherent in their design is a
2014, p. 125, Fig. 8.1) show notably higher rates focus on support for self-determined choices in
of employment of young adults receiving dis- retirement timing and activities. In addition,
ability benefits in their 20s but with substantial these approaches build on the person with intel-
and continuing decline for progressively older lectual disability’s existing capacities and iden-
age groups beginning in the 30s. This trend could tify what is meaningful to them to establish new
represent people retiring from their mid-30s social connections and community roles in
onwards, but it may also partly reflect cohort mainstream environments.
effects due to greater recent support for
employment that is accessed more by younger
people with intellectual disability entering the Transition to Retirement Project
adult service system. It seems likely that health
issues are one important factor, but it is unclear Transition to Retirement (TTR) is an Australian
what the full range of factors are that drive applied intervention that combined the principles
decisions to retire, particularly in one’s 30s or of active aging with tested support methods to
40s and what effect such factors have on one’s promote a gradual transition to an active, socially
life experience in retirement. Much better data inclusive retirement lifestyle for older adults with
about retirement (both longitudinal and disability. Most participants had intellectual dis-
cross-sectional) are needed if we are to under- ability. The project supported workers aged 45 or
stand the age at which workers with intellectual older in sheltered employment to take part in a
disability retire and the factors that influence mainstream community group or volunteering
their retirement decisions. It is only with a sound opportunity (Bigby et al., 2014; Stancliffe et al.,
understanding of these issues that effective 2013b). Participants joined groups such as com-
methods can be developed to support retirees munity gardens, craft groups (e.g., knitting;
with intellectual disability to experience an woodworking), older people’s exercise groups,
active, socially connected and inclusive seniors’ centers, a community choir, or volun-
retirement. teered at a charity shop or soup kitchen. Groups
were chosen based on the person’s expressed
activity preferences and/or current or former
Research to Practice: Examples interests.
of Effective Approaches Older people with disability acknowledged
to Retirement by People that they may require supports to make com-
with Intellectual Disability munity participation activities, such as volun-
teering, successful for all parties (Balandin,
Commonly, people who retire from sheltered Llewellyn, Dew, Ballin, & Schneider, 2006).
employment move to a segregated day program Likewise, community group members were
where people with intellectual disability take part willing to support older people with a disability,
in unpaid activities (Bigby et al., 2011; Lawrence but were unsure about how to best provide
23 Retirement 349

support (Balandin, Llewellyn, Dew & Ballin, that the TTR intervention was feasible and dur-
2006). The TTR program uses existing commu- able, with 86% of intervention participants
nity group members as mentors and trains them attending their mainstream community group for
to support the person with intellectual disability at least six months. Community groups were
at the group using an approach called active mostly very willing to accept a new member with
mentoring (Wilson et al., 2010). a disability, and recruiting and training mentors
Active mentoring. Active mentoring combi- from among group members was achieved
nes the methods of Active Support with the without undue difficulty.
principles of co-worker training to ensure that The TTR program was also beneficial (Stan-
people with intellectual disability take part in cliffe et al., 2015). As expected, intervention
activities and social interaction at their commu- participants significantly increased their socially
nity group. Active Support is a means of inclusive community participation, made new
increasing participation in activities so that the friends and reduced their work hours. Following
person with intellectual disability does not the 6-month intervention, participants were more
become a passive observer (Stancliffe, Jones, socially satisfied (i.e., reported having friends
Mansell & Lowe, 2008). It involves ensuring that and social support) than matched comparison
activities are available and that needed support is group members who continued to work unchan-
given to enable participation. Co-worker training ged hours and did not join a community group.
was developed for mainstream employment Stancliffe et al. (2015) also reported possible
where a co-worker is trained to provide support mental health benefits. Using life events as a
to a fellow worker with disability (Farris & moderator variable, at post-test intervention-
Stancliffe, 2001). group participants had significantly lower
An example from the TTR project of support depression scores for proxy-reported depression.
for participation in an activity concerns a mentor The authors proposed that the TTR intervention
helping a woman with intellectual disability, had protective effects against depression for
Leone, play bingo at her community group. individuals experiencing multiple adverse life
During bingo, Leone and the mentor sat together. events. Job loss and retirement themselves are
If Leone missed a number the mentor pointed to considered adverse life events that can increase
it on the bingo sheet to remind Leone to cross it the risk of depression (Mandal & Roe, 2008), so
off. An example of supported social interaction a retirement intervention that protects against
involved a mentor making sure that a man with depression is of value. Independent replication of
intellectual disability knew when it was time for these findings would further strengthen their
morning tea and then used verbal prompts and credibility.
simple questions to help him contribute to the As noted, the research project provided sup-
conversation. port to participants and mentors for six months.
The TTR intervention. The TTR research The main disability service provider partner, the
project consisted of 6-months of support and data Australian Foundation for Disability (AFFORD),
collection where older workers dropped one day continued TTR as a part of its usual service
of sheltered employment and replaced it with delivery. Consequently, a number of research
participation in a mainstream community or participants have sustained their original activi-
volunteering group. By design, only one TTR ties for more than five years and added new
participant joined each community group in socially inclusive activities on other days as they
order to foster a greater sense of belonging and to develop their retirement lifestyle further.
focus on the individual and their specific retire- Self-determination. As noted, McDermott
ment needs. The main components of the TTR et al. (2012) reported low levels of
program are set out in Fig. 23.1. self-determination regarding retirement from
Feasibility and outcomes of the TTR sheltered employment in Australia under stan-
intervention. Stancliffe et al. (2015) reported dard service provision arrangements.
350 R.J. Stancliffe et al.

Fig. 23.1 TTR program flow chart. Shaded boxes denote activities focused on a specific individual with long-term
disability. Modified version of Fig. 1.1 from Stancliffe et al., (2013b). Used with permission
23 Retirement 351

Conceptually, a gradual retirement process such manual’s chapters largely reflect the major
as TTR provides opportunities for participants to components of the TTR program illustrated in
control the timing, extent, and pace of their Fig. 1. The DVD contains 5 to 8-min video
retirement. Stancliffe et al. (2013a) described segments depicting the individual experiences of
strategies to support self-determination that six older workers with intellectual disability who
formed part of the TTR program, including opt- each joined a different type of community
ing into the program, choice of activities and group. These videos are intended to provide role
companions at the community group, but to date, models and concrete examples of a range of
there has been no formal assessment of the extent retirement activities and support practices.
of self-determination actually experienced. From Conclusions about TTR. While promising,
the standpoint of positive psychology, it is currently the TTR program is not widely avail-
important to identify how self-determined people able, so many older workers with intellectual
with intellectual disability are when making disability are limited to segregated retirement
decisions about retirement and about their life- options (Bigby et al., 2011; Lawrence & Roush,
style when retired, and how to increase 2008). There is clearly a need to develop and test
self-determination in these contexts. effective approaches to scaling up such socially
Costs of implementing TTR. One feature of inclusive interventions. In addition, the research
the TTR model is that routine support at the on TTR involved a single project and research
community group is provided by other group team, so independent replication is also a prior-
members who volunteer as mentors. In addition ity. Finally, greater focus by researchers on the
to the social inclusion benefits of this approach, it positive psychology dimensions of TTR would
also reduces support costs because volunteer help to identify the extent to which such
mentors are unpaid. However, much initial sup- approaches promote self-determination, personal
port is provided by the paid TTR coordinator. growth, positive relationships and enjoyment of a
This work includes determining the person’s good life in retirement.
interests, locating a suitable community group,
supporting the person during initial visits to the
group, planning a new routine, teaching travel Retirement Intervention for Workers
skills (if needed), and recruiting and training in Mainstream Jobs
mentors. Bigby et al. (2014—see Fig. 2) showed
that within the first six months or so these The literature on best practice for supporting
important tasks require an average of 90 h of the people with intellectual disability in mainstream
TTR coordinator’s time per client, with the most employment has a focus on identifying the inter-
intensive work occurring in the weeks prior to ests and talents of the individual rather than
and immediately following the first visit to the functional deficits and on understanding what is
group. Importantly, once the person had suc- personally meaningful to them in way that is
cessfully attended their group for several weeks, consistent with positive psychology. Customized
TTR coordinator support hours rapidly fell to a employment involves focusing on the strengths,
low level. Given the evident sustainability of interests or the choices of the person to negotiate a
the TTR approach, this initial investment of work role that meets the needs of both the person
intensive TTR coordinator support appears cost- with intellectual disability and the employer
effective as mentors soon take over day-to-day (Griffin, et al., 2008). Building on the Transition to
support at the group. Retirement work described previously, Brotherton
The TTR inclusive practice manual. To et al. (2016) proposed that the practices of suc-
facilitate translation into practice, an inclusive cessful mainstream disability employment ser-
TTR practice manual and DVD was developed to vices can be utilized to support people to
enable practitioners to implement the TTR participate in and contribute to their community
intervention (Stancliffe et al., 2013b). The including customized volunteering roles in their
352 R.J. Stancliffe et al.

leisure time or post-retirement Through partner- Asebedo, S. D., & Seay, M. C. (2014). Positive psycho-
ship with a high-performing disability employ- logical attributes and retirement satisfaction. Journal of
Financial Counseling and Planning, 25(2), 161–173.
ment service that specializes in mainstream Australian Bureau of Statistics. (2013). Retirement and
employment for people with moderate intellectual retirement intentions, Australia July 2012–June 2013.
disability, a project is currently underway to Catalogue No. 6238.0. Retrieved from http://www.
evaluate the effectiveness of this approach. abs.gov.au/AUSSTATS/[email protected]/
ProductsbyCatalogue/
D85E2A6345A76BF5CA25710C007481A0?
OpenDocument
Conclusions Australian Government, Department of Education,
Employment and Workplace Relations. (2014). Eval-
uation of disability employment services 2010–2013
This chapter examined retirement from paid final report. Retrieved from https://www.dss.gov.au/
employment by people with intellectual disabil- sites/default/files/documents/05_2014/des_
ity. While a good deal is known about retirement evaluation_report.pdf
by members of the general community, retire- Australian Government, Department of Human Services.
(2016). Age pension. Retrieved from https://www.
ment by people with intellectual disability has humanservices.gov.au/customer/services/centrelink/
received little systematic attention by research- age-pension
ers, policy makers or service providers. The Australian Government, Department of Social Services.
limited available research suggested that there (2015). Operational guidelines, disability employment
assistance. Version 8.0, July 2015. Canberra: Depart-
may be important retirement-related differences ment of Social Services. Available online at https://
between people with intellectual disability www.dss.gov.au/our-responsibilities/disability-and-
working in sheltered employment and those in carers/programmes-services/for-service-providers/
mainstream work, but these notions need to be disability-employment-assistance/operational-
guidelines-disability-employment-assistance
tested using direct comparisons between the two Balandin, S., Llewellyn, G., Dew, A., Ballin, L., &
groups. Basic data are currently not available Schneider, J. (2006). Older disabled workers’ percep-
about when and why workers with intellectual tions of volunteering. Disability and Society, 21, 677–
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Balandin, S., Llewellyn, G., Dew, A., & Ballin, L.
support is to be provided for retirees with intel- (2006b). ‘We couldn’t function without volunteers’:
lectual disability. Even so, we described exam- Volunteering with a disability, the perspectives of
ples of retirement interventions that resulted in not-for-profit agencies. International Journal of Reha-
bilitation Research, 29, 131–136. doi:10.1097/01.mrr.
active, socially connected and inclusive retire-
0000191850.95692.0c
ment activities. As these interventions showed, Bigby, C., Wilson, N. J., Balandin, S., & Stancliffe, R.
many aspects of retirement are consistent with J. (2011). Disconnected expectations: Staff, family,
positive psychology, but to date, little main- and supported employee perspectives about retire-
ment. Journal of Intellectual and Developmental
stream or intellectual disability-specific research
Disability, 36, 167–174. doi:10.3109/13668250.
has explicitly linked positive psychology and 2011.598852
retirement. We hope that the issues noted in this Bigby, C., Wilson, N. J., Stancliffe, R. J., Balandin, S.,
chapter may help focus future research attention Craig, D., & Gambin, N. (2014). An effective program
design to support older workers with intellectual
on the considerable potential for examining
disability to participate individually in community
retirement by people with intellectual disability groups. Journal of Policy and Practice in Intellectual
from a positive psychology perspective. Disabilities, 11(2), 117–127.
Bittles, A. H., Petterson, B. A., Sullivan, S. G., Hussain,
R., Glasson, E. J., & Montgomery, P. D. (2002). The
influence of intellectual disability on life expectancy.
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Author Biographies
Roger J. Stancliffe, PhD is Professor of Intellectual Dis- Faculty of Health Sciences, The University of Sydney and
ability at the University of Sydney’s Centre for Disability Associate Investigator in the Australian Research Council’s
Research and Policy. His research focuses on making a dif- Centre of Excellence in Population Ageing Research. Dr.
ference in the everyday lives of people with intellectual dis- O’Loughlin’s research activity and expertise is in population
ability. For example, he recently led the 3-year Transition to ageing with a particular focus on the baby boom cohort and
Retirement research project that demonstrated the benefits for workforce participation (health and well-being, competing
older Australians with disabilities of developing an active, demands of paid work and care-giving, transition to retire-
socially inclusive retirement lifestyle. He edited the Journal ment, age discrimination), and community care services and
of Intellectual and Developmental Disability from 2003 to policies.
2008, and is the recipient of the 2011 AAIDD Research
Nathan J. Wilson, PhD is a Senior Lecturer at the School of
Award.
Nursing and Midwifery, Western Sydney University. Dr.
Michelle Brotherton, BApplSc (OT), MPH is a doctoral Wilson’s research focuses on the health and social partici-
student at the University of Sydney’s Centre for Disability pation of people with intellectual and developmental dis-
Research and Policy. Michelle has extensive experience as a ability. Dr. Wilson also has a special interest in men’s health
practitioner in the field of supported employment for people and the gendered issues facing men and boys with intellectual
with moderate intellectual disability. Her research interests and developmental disability. He was formerly a specialist
include community-based leisure and employment supports developmental disability nurse and has worked in both the
with a focus on the transition to retirement. UK and Australia.
Kate O’Loughlin, PhD is Associate Professor in Health
Sociology in the Ageing, Work and Health Research Unit,
 Aging
24
Lieke van Heumen and Tamar Heller

Introduction The Aging Population

Research on older adults with intellectual dis- Life expectancy at birth has increased worldwide
abilities often focuses on age-related losses in because of improvements in health and social
functioning and on ways to prevent decline care (Sheets, 2011). A child born in the USA in
(Heller & van Heumen, 2013). A positive psy- 2011 can expect to live 78.7 years, about
chology perspective on aging focuses on creating 30 years longer than a child born in 1900
a positive and meaningful aging experience. It (Administration on Aging and Administration for
enables the formulation of supports and services Community Living, 2012). The population is
informed by the life stories, experiences, and getting older, and the cohort of older people is
individual needs and preferences of these adults. larger than ever before (Victor, 2010). Since
This chapter discusses the main aging issues and 1900, the number of older Americans increased
concerns among the population of older people over 13 times (from 3.1 million to 41.4 million)
with intellectual disabilities, introduces a life and the percentage of older Americans more than
course perspective to aging with intellectual tripled (from 4.1% in 1900 to 13.3% in 2011).
disabilities, and focuses on the main late life One in every eight Americans is now over the
transitions for this population. It concludes with age of 65 (Administration on Aging and
three upcoming areas of strengths-based supports Administration for Community Living, 2012).
to foster aging well among adults with intellec- The same medical and social factors that have
tual disabilities: future planning, social network led to the increase in longevity of the overall
interventions, and life story work. population have also significantly increased the
life spans of people with disabilities (Kemp &
Mosqueda, 2004; Sheets, 2011). The evidence
base regarding the demography of aging of peo-
ple with disabilities in the USA is growing even
though substantial gaps remain (Freedman,
2014). We know that people aging with a dis-
ability form an increasing proportion of the pop-
ulation (Sheets, 2005). Data from the 2008–2012
L. van Heumen (&)
T. Heller
Department of Disability and Human Development, American Community Survey five-year estimates
University of Illinois at Chicago, indicated that 38.7% of the population of adults
1640 W. Roosevelt Rd, Chicago, IL 60608, USA aged 65 and over reported having one or more
e-mail: [email protected]
disabilities, the equivalent of 15.7 million people
T. Heller (He & Larsen, 2014). This includes both people
e-mail: [email protected]

© Springer International Publishing AG 2017 357

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0_24
358 L. van Heumen and T. Heller

with mid- or late life onsets (who are said to (Heller & Marks, 2006; Mosqueda, 2004).
experience disability ‘with’ aging or age ‘into’ Healthier lifestyles, better nutrition and more
disability) and people with early-onset or lifelong exercise, and greater surveillance of health risks
disabilities (who are said to ‘age with disability’) are ways to improve the health status of adults
(Putnam, 2007; Verbrugge & Yang, 2002). with intellectual disabilities (Acharya, Schindler,
& Heller, 2016; Haveman et al., 2010; Heller &
Marks, 2006). In addition, it is important to
Aging of People with Intellectual remove societal barriers for people with dis-
Disabilities abilities that impede their ability to receive
appropriate health care, including healthcare
The largest group of people aging with lifelong providers’ lack of knowledge (Ansello & Jan-
disabilities is those with intellectual disabilities icki, 2000; van Schrojenstein Lantman-de Valk,
(Bigby, 2004). The life expectancy of this group 2009), complex bureaucracy, and physical and
is increasing, but still lower than that of the societal attitudinal barriers (Heller & Marks,
general population. Recent studies conducted in 2006; Lightfoot, 2007).
higher income countries estimated that people Aging is associated with many aspects of loss,
with moderate intellectual disabilities live into such as gradual diminishment of physical and
their late 60s and those with severe intellectual possible mental capabilities, retirement, and
disabilities into their late 50s. The estimated life possible relocating to a new residence. Coping
expectancy of people with mild intellectual dis- with the loss of significant others is another
abilities is 74 years and approaches that of the universal experience of older adults (Ludlow,
general population (Bittles et al., 2002; Haveman 1999). People with intellectual disabilities might
et al., 2009). experience some age-associated losses at a
Over the next 20 years, the US population of younger age. They might not experience the
older adults with intellectual disabilities will consequences of adult children leaving the home,
likely increase considerably. Based on data from but be confronted with the consequences of loss
the US Census (Population Division US Census of family and staff caregivers, as well as peers.
Bureau, 2008; US Census Bureau, 2010) and The natural processes of aging may be more
Larson et al. (2001), Factor, Heller, and Janicki stressful for older adults with intellectual dis-
(2012) estimated there are 850,600 people with abilities because of their greater need for every-
intellectual and developmental disabilities aged day support, limited ability to understand what is
60 and older living in the USA. By 2030, their happening to them resulting from communica-
numbers are expected to swell to an estimated tion or cognition impairments, or societal atti-
1.4 million due to increasing life expectancy and tudes that deny them access to information and
the aging of the baby boomer generation. support needed to successfully cope with and
Persons with intellectual disabilities are a adjust to losses. In addition, they are at a higher
priority population due to several biological, risk to face their own mortality alone as they lose
social, and societal factors. They have on aver- their next of kin (Parker Harris, Heller, Schindler,
age twice as many health problems than those in & van Heumen, 2012). Due to these reasons,
the general population (van Schrojenstein Lantman older adults with intellectual disabilities need
de-Valk & Noonan-Walsh, 2008) and are likely adequate additional supports to promote their
to develop secondary and unique conditions well-being. Unfortunately, the disability and
related to their disabilities as they age (Lightfoot, aging fields rarely conduct research aimed to
2007). This population therefore requires more retrieve the views of older people with intellec-
health care (Heller, 2004) and is confronted with tual disabilities themselves on aging, on how
complex medical decisions (Kapp, 1999). Not they would like to be supported to have a better
all changes in health and function that are quality of life, and on what they consider
common among this population are inevitable important to age well (Bigby, 2004).
24 Aging 359

The Aging Experience of People disabilities may start to feel old when they
with Intellectual Disabilities begin to notice difficulties with walking, seeing,
hearing, eating, and talking (Haveman et al.,
Only a limited number of researchers have 2009).
engaged with retrieving the experiences of older
adults with intellectual disabilities regarding the
aging experience. In the Netherlands, Urlings Life Course Perspective to Aging
et al. (1993) found in a qualitative study with with Intellectual and Developmental
older people with intellectual disabilities that Disabilities
aging was only a major topic of interest for
individuals over 70. These individuals related the To understand the experiences and the needs of
decline of self-help skills and the anxiety of adults with intellectual disabilities as they age
becoming physically ill and bedridden to the and in order to provide appropriate supports, it is
perceived concept of aging. Growing old and important to have insight into their experiences
dying were major issues for these older adults. in earlier stages of life. Aging is a lifelong pro-
In a study of adults with intellectual disabili- cess, and circumstances, events, behavior, and
ties aged 40 and older conducted in Ireland, most relationships earlier in life influence the devel-
of the adults interviewed described their health as opment of people at older ages (Elder, Kirkpatrick
very good to excellent but expressed negative Johnson, & Crosnoe, 2004; Marshall, 1996;
views of the consequences of aging (Burke, Passuth & Bengtson, 1988). Examples of such
McCarron, Carroll, McGlinchey, & McCallion, life course factors that can impact the health and
2014). Brown and Gill’s (2009) participatory well-being of people with intellectual disabilities
study with older women with intellectual dis- later in life include lack of education, institu-
abilities also found that these women thought tionalization at an early age, limited social net-
about getting older in mostly negative ways. works, loss of close and confiding relationships,
They understood aging as a physical process and bereavement, absence of valued social roles, low
thought of getting ill and dying as part of the income and poverty, service breaks and transi-
aging process. The women also expressed that tions, and shifting patterns of interdependence
with aging, they experienced the loss of loved with parents during the life cycle (Grant, 2005).
ones, such as parents, friends, or siblings. Some These circumstances can have formative and
women also identified positive aspects of aging, cumulative effects on the long-term economic,
such as ‘getting discounts’ and the idea that older social, psychological, and physical well-being of
people ‘deserve more respect.’ Family members’ these individuals (O’Rand, 2009).
and peers’ words and attitudes often shaped how Unfortunately, little research has addressed
the women framed understandings of aging and lifelong disability from a life course perspective
disability. A study conducted on older women (Jeppsson Grassman, Holme, Taghizadeh
with intellectual disabilities in Israel found that Larsson, & Whitaker, 2012; Kelley-Moore,
these women desired to be active and were 2010; Parker Harris, Heller, & Schindler, 2012;
reluctant to retire (David, Duvdevani, & Doron, Priestley, 2003; Yorkston, McMullan, Molton, &
2015). Furthermore, they also associated aging Jensen, 2010). The experiences of younger
with physical deterioration and decline. persons, mid-life adults, and older adults with
Functional aspects of aging might be more disabilities are often approached independently,
important than chronological age for older per- without acknowledging life course processes
sons with intellectual disabilities’ experiences of (Kelley-Moore, 2010). A life course approach
aging. Milestones such as reaching 50, 60, or 70 that addresses disability issues across generations
might not be meaningful for persons who are only and through various life stages such as the aging
able to count to twenty. Adults with intellectual process is complex, but useful to inform and
360 L. van Heumen and T. Heller

further our understanding of disability. Disabling deinstitutionalization movement, the majority of

barriers affect the circumstances, experiences, older adults experienced only sheltered work and
and opportunities of people with disabilities of only a small minority have achieved competitive
different generations in different ways through employment (Sterns, Kennedy, Sed, & Heller,
the life course. As a consequence, there are dif- 2000).
ferences in the life experiences of different age Longer lives mean that persons with intellec-
cohorts of persons with disabilities. Additionally, tual disabilities now live beyond the relevance of
disability can be experienced differently in dif- traditional skills development or job programs
ferent life stages (Irwin, 2001; Parker Harris, (Ansello & Janicki, 2000; Bigby, 1997). For
Heller, & Schindler, 2012). older people in the general population, retirement
often consists of phasing out of employment and
receiving other financial means to support a
Late Life Transitions Among People non-employment lifestyle. Retirement of people
with Intellectual and Developmental with intellectual disabilities in the USA is not
Disabilities financially driven in the same way, and daily
support structures and environments often
A useful concept in understanding the experi- change little, as government financial supports do
ences of aging adults with intellectual disabilities not change and usually neither do residential
from a life course perspective is that of late life settings. The focus of daily activities for older
transitions. Transitions refer to disruptions in people with intellectual disabilities might move
individuals’ day-to-day lives. These can include from employment to socialization. Retirement
both daily stressors and major life events (Elder, opportunities for older adults who live in resi-
1985). Major life events and changes such as dential settings are usually determined by the
leaving home or losing loved ones can cause a policies of the agency that supports them, and for
great deal of stress (Almeida & Wong, 2009). older adults living at home with family few
Adults with intellectual disabilities may face changes might occur (Hahn et al., 2016).
additional challenges in navigating late life A major concern is evidence that despite their
transitions due to their changes in supports. aspirations for continuing inclusion, older people
Henceforth, three major late life transitions for with intellectual disabilities experience few
older adults with intellectual disabilities will be opportunities to participate in meaningful day
discussed: the transition to retirement, transitions and leisure activities of their choice (Heller,
in social networks, and the final transition of 1999). Natural approaches to retirement for both
death and dying. people with and without intellectual disabilities
promote active engagement in non-paid activities
that provide purpose and meaning. These may
The Transition to Retirement include involvement in senior organizations and
services in local communities (Hahn et al., 2016).
The population of people with intellectual dis- For example, senior centers can provide people
abilities differs from the general population in with intellectual disabilities able to participate the
work experiences. Before the deinstitutionaliza- opportunity to learn and grow in a new and
tion movement, employment for people with integrated environment (Factor et al., 2012).
developmental disabilities who lived at home In Australia, Stancliffe, Bigby, Balandin,
was uncommon. Employed individuals who Wilson, and Craig (2015) designed a program to
lived in institutions tended to hold jobs that were support older people with intellectual disabilities
limited to in-service or agricultural tasks related in the transition to retirement. Participants in the
to the functioning of the environment. After the program attend mainstream community groups
24 Aging 361

around activities of their interest once a week Social Networks of People

(e.g., choir, walking and knitting group, com- with Intellectual Disabilities
munity garden) and received support to partici-
pate by community group members trained as The literature on social relations of people with
mentors. An evaluation of the program demon- intellectual disabilities is limited but diverse. It
strated that participants increased their commu- has primarily explored the association between
nity participation, made an average of four new well-being and social relations for people with
social contacts, decreased their work hours, and intellectual disabilities, the number and types of
were more socially satisfied than individuals in social relations included in their social networks,
the control group. Stancliffe et al. concluded that and the social interactions between those with
participation in mainstream community groups and without intellectual disabilities (Kersh,
with support from trained mentors is an effective Corona, & Siperstein, 2013).
tool to develop meaningful retirement for older Generally, the networks of people with intel-
people with intellectual disabilities. lectual disabilities are small. Their networks lack
contact with people who do not have intellectual
disabilities outside of family members and direct
Social Networks and Aging support staff (Lippold & Burns, 2009; van
Asselt-Goverts, Embregts, Hendriks, & Frielink,
Supportive networks play a critical role in older 2014; Verdonschot, Witte, Reichrath, Buntinx, &
individuals’ life quality and happiness (Barrera, Curfs, 2009). Many adults with intellectual dis-
2000; Bigby, 2004; Kennedy, 2004). Satisfaction abilities spend free time alone (Krauss & Erickson,
of the fundamental human need to develop close, 1988), and loneliness is prevalent in all
long-lasting, and supportive relationships age-groups of those with intellectual disabilities
(Baumeister & Leary, 1995) is associated with (Hogg, Moss, & Cooke, 1988; Krauss & Erickson,
positive health outcomes (Knipscheer & Antonucci, 1988; McVilly, Stancliffe, Parmenter, & Burton-
1990), subjective well-being, happiness, and Smith, 2006; Stancliffe et al., 2007).
positive affect in general (Baumeister & Leary, Qualitative research with people with intel-
1995; Hogan, Linden, & Najarian, 2002). When lectual disabilities indicates that they value
persons experience social isolation and a lack of companionship, closeness, support, and stability
social support, they are prone to experience as the most noteworthy aspects of their friend-
negative affect, depression, loneliness, and anx- ships (Kersh et al., 2013). A growing number of
iety as a consequence (Antonucci, Akiyama, & studies have documented their desire to engage
Sherman, 2007; Baumeister & Leary, 1995; in more community activities and to have more
Berkman, Ertel, & Glymour, 2011; Broese van friends (Abbott & McConkey, 2006).
Groenou & van Tilburg, 2007; Cohen & Syme,
1985; Due, Holstein, Lund, Modvig, & Avlund,
1999; Hogan et al., 2002; Knipscheer & Antonucci, Social Networks of Older People
1990; Stevens, Martina, & Westerhof, 2006; with Intellectual Disabilities
Wills & Shinar, 2000).
The lives older people have lived shape their Familial relations are important for the optimal
social networks (Knipscheer & Antonucci, development and well-being of people with
1990). These networks reflect earlier life cir- intellectual disabilities (Bigby, 2003; Buys, Aird,
cumstances and transitions. Additionally, they & Miller, 2012; Noonan Walsh, 2002). However,
represent individual opportunities and needs and many older persons with intellectual disabilities
choices to maintain and develop supportive have limited or no contact with family members
relationships (Antonucci & Knipscheer, 1990; and/or only have contact with parents and sib-
Broese van Groenou & van Tilburg, 2007). lings (Maaskant, 1999, 2007; Meeusen &
362 L. van Heumen and T. Heller

Maaskant, 2004). Most older people with intel- integral part of the support networks of many
lectual disabilities do not have spouses and older people with intellectual disabilities (Bigby,
children (Bigby, 2004, 2005; Seltzer, 1985) on 2000b, 2002). Lippold and Burns (2009) con-
whom they can depend for support (Seltzer, cluded that the social networks of older people
1985). This also means they do not assume the with intellectual disabilities who rely on formal
roles of being grandparents or in-laws. As they services may not be stable over time, as the
tend to have long-lasting close relationships with relationships within these networks tend to be
their siblings who often become primary care- role-prescribed and characterized by minimal
givers after parents die (Bigby, 2002; Heller & reciprocity.
Arnold, 2010), sometimes adults with intellectual Formal supports from staff and professionals
disabilities assume the roles of being (great-) cannot fully replace the affective support pro-
aunts and (great-)uncles (Bigby, 2004, 2005). vided by informal network members (Bigby,
Older people with intellectual disabilities tend 2000a, 2002, 2003). Older people with intellec-
to have fewer stable and close friendships to tual disabilities who lack informal network
complement their familial relationships than members may have no one to protect their rights
older adults in the general population. Instead, and oversee their well-being. It is difficult for
they are more likely to have acquaintances rather formal organizations or paid relationships to
than close friends (Bigby, 2002; Lippold & commit to advocating for an individual long term
Burns, 2009; Maaskant, 1999, 2007; Meeusen & (Bigby, 2005). Hence, formal services need to
Maaskant, 2004; Robertson et al., 2001). nurture, build, and strengthen informal supports
With longer life expectancy is a greater like- for the individual (Bigby, 2000a, 2005). How-
lihood of the adult with a disability outliving his ever, many residential settings do not provide
or her parents than in the past (Heller & Caldwell, sufficient opportunities for older residents to par-
2006). Relocation after the death of parents often ticipate in community activities (Hsieh, Heller, &
results in a loss of relationships (Bigby, 2000b). Freels, 2009; McConkey, 2005).
When parents die, there is a danger that incidental The body of knowledge on the social relations
contact with extended family such as cousins, of older adults with intellectual disabilities is
nieces, nephews, aunts, and uncles is lost without incomplete and mostly dated. Little research has
specific efforts by relatives to involve them, as the explored the perspectives of older adults with
people with intellectual disabilities usually no intellectual disabilities on their social relations.
longer live in the parental home where family Buys et al. (2008) interviewed older service users
events took place. Although contact with shared with intellectual disabilities (N = 16) and found
family friends might be retained after the parents’ that these individuals valued satisfying relation-
death, such friends are likely to be from an older ships and support as elements to active aging.
generation and to predecease the adult with a They defined companionship as having someone
disability (Bigby, 2005). to engage with in activities and friendship as
For some people with intellectual disabilities, having a trusting and satisfying relation-
the loss of their parents can signify a shift to an ship. Some participants reported that church or
adult rather than child role and create the social group membership and employment
opportunity to develop new intimate friendships enhanced their social interaction and supported
(Bigby, 2005). For these people, later life can be their friendships. They reported needing both
a time when their social worlds expand and, freed formal and informal supports to participate in
from the restrictions imposed by parents, they desired activities. Even though the importance of
can build new relationships as participants in including perspectives of people with intellectual
community activities (Bigby, 2002). disabilities in research has been widely
As adults with intellectual disabilities age, acknowledged, research of this nature remains
direct support staff members increasingly replace limited (Lunsky, 2006; Mactavish, Mahon, &
parents as primary caregivers. They become an Lutfiyya, 2000).
24 Aging 363

Death and Dying professionals to provide information in a

person-centered way that is most appropriate to
Bereavement is often a source of trauma for help the individual with an intellectual disability
people with intellectual disabilities. Distressing understand. To improve communication and
bereavements after the death of parents can occur accessibility of information, it might be helpful
when adults with intellectual disabilities witness to read the information to the individual or to use
the parent dying or find them dead (Mitchell & nonverbal modes of communication such as
Clegg, 2005). People with intellectual disabilities pictures (Department for Constitutional Affairs,
are more likely to develop mental health prob- 2007; Heller, 2004; van Schrojenstein
lems following bereavement than those in the Lantman-de Valk, 2005).
general population (Bonell-Pascual et al., 1999). Disability services are often unprepared to
Caregivers may be concerned about the capacity handle the last phase of the life span of adults
of people with intellectual disabilities to under- with intellectual disabilities. Staff might lack
stand and cope with the finality of death or do not knowledge of the amount and types of support
recognize the need of the person with a disability required for these individuals as well as for
to be informed and included, and to grieve themselves during the dying process. Addition-
(Blackman et al., 2003; Parker Harris, Heller, & ally, many practitioners are unsure whether to
Schindler, 2012; Sterns et al., 2000). Such inform persons with intellectual disabilities that
interference denies this population important they are dying (Todd, 2004, 2005). This takes
opportunities to learn and grow (Ludlow, 1999). away an opportunity for these adults to be
The need for appropriate death education and involved in decision-making about their own
bereavement counseling for people with intel- end-of-life. A lack of health guidelines exist of
lectual disabilities has been recognized by many how to inform and counsel adults with intellec-
in the field (Sterns et al., 2000). The work of tual disabilities about the course of diseases and
Tuffrey-Wijne (2013) on breaking bad news to the dying process (Hahn et al., 2016). Two
people with intellectual disabilities aims to resources were recently created to help adults
include, inform, and help these adults cope with with intellectual disabilities understand disease
age-associated losses. and talk about end-of-life planning when facing a
Similarly, issues around death and dying and serious illness. The tool developed by Watch-
end-of-life care for people with intellectual dis- man, Tuffrey-Wijne, and Quinn (2015), ‘Jenny’s
abilities themselves have yet to receive adequate Diary,’ aims to support conversations about
attention in research, policy, and practice (Hahn dementia with people who have intellectual dis-
et al., 2016; Tuffrey-Wijne, 2003). One of the abilities. Tomasa (2014) created a tool for
factors influencing the quality of end-of-life care opening up communication about end-of-life
is communication barriers between medical pro- planning among people with intellectual disabil-
fessionals and people with intellectual disabili- ities, families, direct support staff, and medical
ties. People with intellectual disabilities have professionals.
difficulty verbalizing their needs, including any
pain they are experiencing, or understanding
information provided to them by care providers. Future Planning
Care providers often lack the skills and training
to effectively communicate with people with Planning for the future is a task encountered by
intellectual disabilities (Tuffrey-Wijne, Hogg, & all people as they age but particularly important
Curfs, 2007). Several policy documents recom- for people with intellectual disabilities (Heller &
mend improved training of health professionals Caldwell, 2006; Kapp, 2007). Without adequate
in communication with people with intellectual plans and supports in place, people with intel-
disabilities (Meijer, Carpenter, & Scholte, 2004). lectual disabilities are at risk of facing emergency
Every effort must be made by health placements in inappropriate settings and
364 L. van Heumen and T. Heller

inadequate or inflexible financial and legal safe- A growing literature base suggests that the
guards when primary caregivers become unable development of self-determination of adults with
to provide supports (Freedman, Krauss, & intellectual disabilities leads to an enhanced
Seltzer, 1997; Heller & Caldwell, 2006). quality of life (Blacher, 2001; Wehmeyer &
Despite concerns about the future, many Schwartz, 1998) and promotes aging well of this
families have not made concrete plans. Fre- population (Heller, 2004).
quently identified barriers to planning include A peer support intervention, called ‘The
lack of information, unavailability of desired Future is Now’ (Heller & Caldwell, 2006), aims
services, difficulty affording attorneys, benefits to support aging caregivers and adults with
resulting from the caregiving role, reciprocity of intellectual disabilities to plan for the future. The
caregiving, and emotional issues concerning intervention consists of a legal and financial
mortality (Freedman et al., 1997; Heller & training and is followed by five small-group
Caldwell, 2006). Even though siblings often take workshops using a peer mentoring co-trainer
on future caregiving roles (Bigby, 1997; Freedman model. An evaluation found that families who
et al., 1997), many parents do not discuss future received the intervention were significantly more
plans with siblings. Additionally, people with likely to complete a letter of intent, take action on
intellectual disabilities are seldom involved in residential planning, and develop a special-needs
future planning (Bigby, 1997, 2000b; Heller & trust compared to the families in a control
Caldwell, 2006). Although there is growing group. Additionally, caregiving burden signifi-
recognition that people with intellectual and cantly decreased for families in the intervention,
developmental disabilities should be active par- and the daily choice making of people with dis-
ticipants in planning processes, sufficient sup- abilities increased.
ports need to be provided to make this a reality Two related interventions to supplement and
(Heller & Caldwell, 2006). integrate into future planning activities have yet
The terms ‘future planning’ and ‘person- to receive adequate attention in practice: social
centered planning’ are used interchangeably in network mapping and life history work. Both
the field. Person-centered planning aims to hold potential to make future planning more
develop collaborative, goal-oriented supports person-centered and effective and will be dis-
focused on community participation and positive cussed in more detail henceforth.
relationships (Claes, Van Hove, Vandevelde, van
Loon, & Schalock, 2010). The field has started to
develop person-centered and future planning Social Network Interventions
activities to support adults with disabilities at
different moments in their lives such as their Often overlooked is that people with intellectual
transitions from childhood into adulthood and disabilities need externally provided support to
from middle age into old age (Heller & Caldwell, develop and maintain their social networks
2006; Heller, Sterns, Sutton, & Factor, 1996; (Bigby, 2002; McConkey, 2005). Both personal
Schippers & van Boheemen, 2009). Planning skills and social opportunities are required for
tasks relate to education and training, current and people to develop relations (McConkey, 2005;
future vocational choices, residential options, Newton, Olson, Horner, & Ard, 1996). People
retirement and leisure-time activities, social need to actively contribute to the process of
supports, and end-of-life wishes (Parker Harris, making friends. Important personal skills to do so
Heller, & Schindler, 2012). The planning process include motivation, self-confidence, interper-
increases the knowledge of late life options and sonal skills, and abilities to resolve conflict and
provides an opportunity for people with intel- express feelings. People with intellectual dis-
lectual disabilities to develop and assert their abilities can benefit from social skills training
choice making and self-determination skills (McConkey, 2005). As a lack of social intuition
(Heller & Caldwell, 2006; Heller et al., 1996). can place them at a heightened risk for abuse,
24 Aging 365

gaining these skills is important for them (Heller Within person-centered planning, each indi-
et al., 2010). vidual’s network should be actively mapped, and
Inclusion requires connection to others. Sim- the history and significance of relationships
ply providing services in community-based set- understood (Bigby, 2004, 2005). The social
tings does not ensure the social inclusion of network mapping process can not only chart
persons with intellectual disabilities within those individuals’ social networks but importantly also
communities (Bigby, 2005). Membership in investigate individuals’ needs and desires
community groups, having acquaintances, regarding social relations. Discrepancies between
spending time with others, and shared activities current and the desired networks can be addres-
and concerns all provide pathways to social sed by setting goals as part of person-centered
opportunities and the development of relation- future planning processes. These goals can be to
ships (Bigby, 2005; McConkey, 2005). expand the social network with new contacts
Person-centered plans should explore strategies and/or to strengthen existing ties with social
for community participation to maintain and relations, such as family members (Bigby, 2004;
strengthen the social relationships of the indi- van Asselt-Goverts et al., 2014). Regular map-
vidual (Bigby, 2005). ping of relationships with the person with an
Support from formal relationships can foster intellectual disability can address potential chal-
development of informal relationships but also, lenges with maintaining social relationships
through neglect and ignorance, obstruct or dis- when circumstances change (Bigby, 2004). This
rupt them (Bigby, 2008). Service providers often is particularly useful during transitions that are
view their role from a limited perspective as likely to disrupt social networks.
other facets of support are given priority In person-centered future planning processes,
(McConkey, 2005). Direct support staff can such as the Planning Alternative Futures with
encourage the growth of informal networks of Hope (PATH) tool (Wetherow & Wetherow,
supports (Power, 2010) by implementing net- 1998), close family members or friends are asked
work interventions to expand and strengthen to take responsibility in helping the individual
social networks (van Asselt-Goverts et al., 2014). with an intellectual disability achieve goals. The
Strategies to support informal relationships and lack of social relationships of those with intel-
build new ones range from consciousness rais- lectual disabilities has been identified as an
ing, reorientation of everyday structures, and impediment to person-centered planning (Claes
support to implementation of more formal net- et al., 2010). Action based on social network
work building programs (Bigby, 2004). One mapping can address this obstacle by helping
approach may be the implementation of a dedi- expand the support network so that
cated function, whereby a skilled inclusion/ person-centered planning can be more
relationship worker is employed to work across successful.
a cluster of residents, to be responsible for
mapping resident’s family constellations and
creatively tackling the continuing engagement of Life Story Work
families in the lives of residents, as well as
developing individual strategies for the fostering Life review promotes aging well (Butler, 1963),
of friendships or advocacy relationships (Bigby, and retrieving memories, also called reminis-
2008). Family relationships may need active cence, is an important activity in older age
support as relatives age and encounter problems (Erikson, 1997). Understanding past experiences
with driving or using public transport. A proac- of older adults with intellectual disabilities is
tive approach to maintaining contact and sup- helpful to understand their current needs. The
porting visits that adapts to changed subjective well-being of older adults is not only
circumstances will help to keep relationships determined by what they experience today, but
alive (Bigby, 2004). also by what happened to them in the past, and
366 L. van Heumen and T. Heller

by their retrospective view on those life events Goodley, 1996; Gray, 1997; Hreinsdottir,
(Westerhof, Dittman-Kohli, & Thissen, 2001). Stefansdottir, Lewthwaite, Ledger, &
Three main perspectives can be identified in Shufflebotham, 2006; Husain, 1997; Mee, 2010;
work done to date with the life experiences and Roets, Goodley, & van Hove, 2007; Roets,
stories of people with intellectual disabilities Reinaart, & Van Hove, 2008; Roets & Van
(Meininger, 2003, 2005; Van Puyenbroeck & Hove, 2003; Van Puyenbroeck & Maes, 2004).
Maes, 2008). In all three approaches, the process Life story work can assist direct support staff to
is more important than the product. In other get to know the needs of the person with an
words, most important is that the telling of the intellectual disability better (Meininger, 2003).
story is meaningful to the person with an intel- The more severe the impairment of an indi-
lectual disability (Van Puyenbroeck & Maes, vidual, the more important it is to use creative
2008). The critical approach revolves around and accessible methods that do not rely primarily
recovering the voices of people with intellectual on verbal communication and content. Life sto-
disabilities. In this approach, the facilitator is a ries can include various media such as a
critical educator who coaches persons with photo-album, an audio account, a video report, or
intellectual disabilities to claim authorship and a ‘memory box,’ which uses physical objects to
ownership of their own life stories. In this represent memories. The concept of multimedia
approach, life histories, autobiographies, and life stories using computer technology is partic-
narratives enhance awareness for people with ularly interesting to further explore and
intellectual disabilities of their past (Van develop. For example, after having worked with
Puyenbroeck & Maes, 2008). In the clinical a facilitator to create the life story, persons with
approach, reminiscence is an alternative diag- limited or no verbal communication can be in
nostic instrument and counseling method for people control of presenting it by simply pressing keys
with intellectual disabilities (Van Puyenbroeck & on the computer keyboard (or any number of
Maes, 2008). alternative input devices). As sound is very
‘Life story work’ aims to ‘retell, study, and important to most persons, being able to include
discuss life stories in contacts between persons music and sounds in a multimedia life story can
with intellectual disabilities, their relatives, and make it a more animated and more personal
friends and caregivers’ (Meininger, 2005, experience (Aspinall, 2010).
p. 108). Life story work also aims to inform the
attitudes and acts of the persons involved in
everyday support of the person with an intellec- Conclusion
tual disability (Meininger, 2003, 2005; van den
Brandt-van Heek, 2011) and, therefore, is an While adults with intellectual disabilities expe-
important tool that can enhance person-centered rience the same transitions associated with later
planning (Aspinall, 2010; Van Puyenbroeck & life as the general population and have many
Maes, 2008) by increasing understanding of the similar support needs, they also have unique
person with intellectual disability and relational needs and considerations. In addressing major
intimacy. This approach includes activities that transitions such as retirement, changes in social
create a written record of a life story such as networks, and death and dying, strategies that
compiling a ‘life book’ (Van Puyenbroeck & bolster person-centered services and supports
Maes, 2008). Life story work has begun receiv- that use inclusive methods can facilitate aging
ing increasing attention in the intellectual dis- well for persons with intellectual disabilities.
ability research, particularly in Europe (e.g., Promising practices that are showing success in
Atkinson, Doeser, & Varga, 2000; Atkinson, navigating these transitions include
Jackson, & Walmsley, 1997; Atkinson & peer-mentored future planning, active mentored
Walmsley, 1999; Cadbury & Whitmore, 2010; retirement planning, social networking, and life
24 Aging 367

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Tamar Heller, Ph.D. Distinguished Professor, heads the

Department of Disability and Human Development, Univer-
Author Biographies sity of Illinois at Chicago (UIC) and its University Center of
Excellence in Developmental Disabilities. She also directs the
Lieke van Heumen, Ph.D. is a postdoctoral research asso-
Rehabilitation Research and Training Center (RRTC) on
ciate at the Department of Disability and Human Develop-
Developmental Disabilities and Health, and is Co-PI of the
ment at the University of Illinois at Chicago. She received
RRTC on Community Living Disability Policy and the
both her undergraduate and master degrees in psychology
Family Support RTC. Her research focuses on health and
with a specialization in gerontology from the Radboud
long-term services and supports for individuals with disabil-
University in the Netherlands. She earned a doctorate in
ities and their families. She was President of the Association
Disability Studies from the University of Illinois at Chicago.
of University Centers on Disabilities (AUCD) board, a dele-
Her primary research interests include the experiences and
gate to the 2005 White House Conference on Aging, and
needs of people aging with lifelong disabilities and their
co-founder of the national Sibling Leadership Network. Her
families across the life course, policies and supports that
awards include the 2009 Arc of Illinois Autism Ally for
contribute to community participation and aging well of this
Public Policy Award; the 2008 Lifetime Research Achieve-
population, and the development of inclusive research
ment Award, International Association for the Scientific
methodology. Her work has been supported by awards and
Study of Intellectual Disabilities, Interest Group on Aging;
scholarships from a number of organizations including Dis-
the 2009 Community Support Services Community Partner
ability Studies in the Netherlands, the Gerontological Society
Award, the 2010 College of Applied Health Sciences, UIC
of America, the American Association on Intellectual and
Outstanding Researcher Award, the AUCD 2012 Interna-
Developmental Disabilities and the International Association
tional Award, and 2015 G. Lawrence Rarick Memorial
for the Scientific Study of Intellectual and Developmental
Scholar Award of the International Federation of Adapted
Disabilities.
Physical Activity.
 Index

A interventions to support positive decision-making

AAC, See Augmentative and Alternative Communication outcomes with, 161–162
(AAC) life design dimensions in, instruments addressing,
AAIDD, See American Association on Intellectual and 319–321
Developmental Disabilities (AAIDD) Adults
ABA, See Applied Behavior Analysis (ABA) friendship, 135
ABDS, See Adaptive Behavior Diagnostic Scale (ABDS) with IDD, interventions to support positive
ABLE Act, See Achieving a Better Life Experience decision-making outcomes with, 158–161
(ABLE) Act Advanced Directives, 251
Accelerometers, 174 Affiliation, 127
Acceptance and Commitment Therapy (ACT), 66, 70, 74 AFFORD, See Australian Foundation for Disability
Achieving a Better Life Experience (ABLE) Act, 343 (AFFORD)
ACT, See Acceptance and Commitment Therapy (ACT) Age/aging, 341, 357–367
Action-control beliefs, 52, 54 death and dying, 363
Active treatment goals, 105–107 future planning, 363–366
Activities/exercises, 101 with intellectual and developmental disabilities, 358
Activity engagement, 101, 182, 273, 278 late life transitions, 360
ADA, See Americans with Disabilities Act of 1990 life course perspective, 359–360
(ADA) life story work, 365–366
Adaptability, 317–318 population, 357–358
Adaptive behavior, 201–213 retirement, 342
assessing, 203–204 intellectual and developmental disabilities, 348
defined, 201 social networks and, 361–362, 364–365
respondents, 209 Transition to Retirement, 360–361
adaptive behavior deficits, 211–212 Agency, defined, 91
measurement error, 213 Agentic action, 52, 54
objective assessment, 212 Age-specific patterns of decision making, 154–158
retrospective assessment, 209–211 Aggression, 87
typical performance, 212 Aging in place, 342–343
skills, 201 Alcohol, tobacco, or other drugs (ATOD), 146, 156
standardized scales, 204–209 Ambulation
Adaptive Behavior Assessment System—3rd Edition fostering, by microswitch-based programs, 267–269
(ABAS-3), 204–205, 212 American Association on Intellectual and Developmental
Adaptive Behavior Diagnostic Scale (ABDS), 207 Disabilities (AAIDD), 17, 82, 201–204,
Adaptive functioning and intellectual functioning, rela- 208–211
tionship between, 202–203 American Association on Mental Deficiency, 16
Adaptive responses, microswitch-based programs for, American Association on Mental Retardation, 15, 17, 28
270–271 American Civil Liberties Union, 250–251
ADMS, See Adolescent Decision-Making Scale (ADMS) American Institutes for Research
Adolescent Decision-Making Scale (ADMS), 150, 156 (AIR) Self-Determination Scale, 42
Adolescents American Psychiatric Association (APA), 200, 201
friendship, 135–136 Americans with Disabilities Act of 1990 (ADA), 17, 31,
with intellectual and developmental disabilities 33, 82, 225
career exploration and development, 316–319 Anxiety, 164

© Springer International Publishing AG 2017 373

K.A. Shogren et al. (eds.), Handbook of Positive Psychology in Intellectual and Developmental
Disabilities, Springer Series on Child and Family Studies, DOI 10.1007/978-3-319-59066-0
374 Index

APA, See American Psychiatric Association (APA) Autonomy, 101, 286

Apple iPod Touch, 272 Autonomy-supportive environments, 61, 289, 290, 291
Applied Behavior Analysis (ABA), 74, 85, 174, 176, 178, Autonomy-supportive instructional strategy, 49, 54
180, 181, 183 Aware-Explore-Apply model, 194, 196
Appreciation of beauty and excellence, 191 Awareness, 109
Approach goals, 232
The Arc’s Self-Determination Scale, 42
ASAN, See Autistic Self-Advocacy Network (ASAN) B
ASD, See Autism Spectrum Disorder (ASD) Basic psychological needs, 286–287
Assessment Scale for Positive Character Traits–Devel- Behavioral health, 70, 81
opmental Disabilities (ASPeCT-DD), 43, 319 Behavioral interventions, 173–183
Assisted ambulation, 267–269 exercise, 174–177
Assisting and teaching, 101 leisure skills, 177–179, 182
Assistive technology, 182, 261–279 organization-wide, 84, 90, 91
microswitch-aided programs, 274–276 physical well-being, 179–181
microswitch-based programs, 262, 264–267 practice and research directions, 181–183
to foster assisted ambulation, 267–269 research basis for practice, 174
to increase adaptive responses and curb problem school-wide, 84, 131
behaviors or postures, 270–271 Behavioral psychology, 174
orientation cues and stimulation, 272–273 Behavioral Skills Training (BST), 181, 301–302
SGDs-aided programs, 276 Behavior support plans, developing, 88
speech-generating devices’ problems in promoting Benefit finding, 87–88
communication, 271–272 Bereavement, 363
technology-aided programs Best Buddies, 136
for basic activity or assembly tasks and mobility, Best practices, operational definition of, 120
276–277 Bike riding, 176
for contact or communication with distant partners, Bill of Rights, 224, 225
277–278 Biopsychosocial model, 16–17
technology packages, for promoting Blatt Institute, 256
contact/communication with distant partners, Borderline Personality Disorder (BPD), 71
274 BPD, See Borderline Personality Disorder (BPD)
Athletic games, 176 Brainstorming Guide, 251
ATOD, See Alcohol, tobacco, or other drugs (ATOD) Bravery, 190
Attention, 109 British Columbia
Attitude, 109 Supported Decision-Making, 252–254
Audio cues within video, 304–305 BST, See Behavioral Skills Training (BST)
Augmentative and Alternative Communication (AAC), Bush, George H.W., 31
138
Australian disability support pension, eligibility for,
343–344 C
Australian Foundation for Disability (AFFORD), 349 CAIMI, See Children’s Academic Intrinsic Motivation
Autism Spectrum Disorder (ASD), 7, 83 Inventory (CAIMI)
and adaptive behavior, 204 Capacity-challenge discrepancy analysis, 234
assistive technology and, 272 Career, See also Employment
behavioral skills training and, 302 adaptability, 317–318
and character strength, 194–197 assessment instruments, for children and preadoles-
and cognition, 149 cents, 315–316
computer simulations and, 300 design, 311–323
and courage, 319 development, 311–323
and decision making, 154–157, 161–162, 164, 165 exploration, 313–314
and exercise, 175–177 preparedness, 318–319
and friendship, 131–136, 138, 139 Career Adapt-Abilities Scale, 319
and leisure activity, 178, 179 Career and Work Adaptability, 320
mindfulness-based programs for, 66–67, 70–72 Career Exploration Scale, 315
and prompting, 299 Career Preparedness Questionnaire, 320
and strengths-spotting, 193 Career Style Interview, 320
and vocational exploration, 314 Caregiver mindful engagement support worksheet, format
Autistic Self-Advocacy Network (ASAN), 139 of, 110
Autonomous motivation, promoting, 89 Care-provider training, 173, 181
Index 375

Caring, 312 Comprehensive Model of Positive Psychological

Causal agency, 51 Assessment (CMPPA), 38, 39
Causal Agency Theory, 49, 51–52, 231, 232 Computer simulations, 299–301
component elements of, 54 Concept-Oriented Reading Instruction (CORI), 288
practices to promote self-determination and, 53–62 Confidence, 312
self-determination, development of, 52–53 Congenital hypothryroidism, 25
Centers for Medicare and Medicaid Services (CMS), 98 Constitution of the United States, 224, 225
Character, 312 Control, 108
Character strengths, 89, 189–197 Copernican Revolution, 23
intellectual and development disabilities and, 194–196 CORI, SeeConcept-Oriented Reading Instruction (CORI)
character strength assessment, 195 Counseling psychology, 38
interactive behavioral therapy, 195–196 Courage, 189, 190, 319, 320
interventions to enhance, 192–194 CREATE engagement
Aware-Explore-Apply model, 194 opportunities, 107–109
to promote other strengths, 193–194 plans, developing, 109–111
signature strengths, promoting, 193 Creativity, 6, 18, 190
strengths-spotting, 192–193 CREVT-2, 149
Child friendship training model, 136 Critical interests, 111
Children Cultural context, 129, 220
career assessment instruments for, 315–316 Curb problem behaviors, microswitch-based programs
with/without disability, career education programs for, for, 270–271
321–322 Curiosity, 18, 108, 190, 193
Children’s Academic Intrinsic Motivation Inventory Cyberbullying, 151–153, 166
(CAIMI), 288
Children’s Hope Scale (CHS), 43, 316
Choice, 108 D
Choice making, 50 DABS, Diagnostic Adaptive Behavior Scale (DABS)
CHS, See Children’s Hope Scale (CHS) Danger to self and others, 91
Circle of Support d, 251 Daytime sleeping, 180
Citizenship skills, 224–225 DBT, See Dialectical Behavior Therapy (DBT)
Civil rights laws, 31 Deaf-blindness, 83
Civil rights movement, 17 Death and dying, 363
CMPPA, See Comprehensive Model of Positive Psycho- Decision making, 18, 50, 218
logical Assessment (CMPPA) interpersonal, role of positive psychology in, 145–167
CMS, See Centers for Medicare and Medicaid Services Deficit-based models of psychology/disability, 4–5, 37
(CMS) Deinstitutionalization, 25–27, 202
Coaching, 83 Delayed retirement, 342
Cognition, role in interpersonal decision making, 149 Delayed sleep onset, 180
Communication, 271–272, 274, 277–278 Developmental disabilities, See Intellectual and develop-
Communicative competency, 138 mental disabilities (IDD)
Community living skills, teaching, 297–307 Diagnosis, 4
audio cues within video, 304–305 Diagnostic Adaptive Behavior Scale (DABS), 207–208
behavioral skills training, 301–302 Diagnostic and Statistical Manual of Mental Disorders,
computer simulations, 299–301 2nd edition (DSM-2), 201
picture prompting strategies, 305 Diagnostic and Statistical Manual of Mental Disorders,
prompting, 298–299 5th edition (DSM-5), 191, 211
simulated environments, 301–302 Diagnostic Manual-Intellectual Disability, 191
video modeling, 302–303 Dialectical Behavior Therapy (DBT), 71
video prompting, 303–304 Digital devices, 178–179
Community placements, 68 Disability
Community services, 25–27 deficit-based models in, 4–5
Community vocational center, 27 Disability-specific patterns of decision making, 154–158
Compassion, 18 Disability Support Pension (DSP)
Competence, 286, 311–312 eligibility for, 343–344
Competency, communicative, 138 Discriminative stimulus (SD), 297, 298
Component behaviour, 306 Disruptive bedtime routines, 180
Comprehension, 154 Down syndrome, 312
376 Index

DSP, See Disability Support Pension (DSP) Forensic settings, 68–69

Forgiveness, 190
Friendship, 127–140
E individual, 138–140
EBPs, SeeEvidence-Based Practices (EBPs) interpersonal, 133–137
Education friendship, 131–132 networks, 154
Education regulations, 32–33 organizational, 130–133
Elementary school friendship, 134–135 promoting, 129
Emotion(s) societal, 129–130
expressive, 19 Functional Analysis (FA), 173
recognition, 164 Functional Behavior Assessment (FBA), 85–89, 173
role in interpersonal decision making, 150–154 Future planning, 363–366
Emotional intelligence, 6
Emotional well-being, 18
Employment G
peoples with intellectual and developmental disabili- General satisfaction, 19
ties, 332–334 Global Challenge Insight Report (World Economic
possibilities for, 334–336 Forum), 311
supported and customized, 329–336 See also Career; Goal
Work accomplishment, 238
Employment First, 332–333 action schema, 233
Employment friendship, 130–131 attainment, 18, 50, 62, 231–234
Empowerment, 50 intellectual and developmental disabilities and, 235
End-of-life care, for peoples with intellectual disabilities, teaching, 239–240
363 measurement, 238
Energy, 109 orientation, 150, 154, 164
Engagement, 101 setting, 18, 50, 220, 231–234
Environment, 108–109 barriers to, 238
Environmental modification, 28–29 intellectual and developmental disabilities and, 235
ESCAPE-DD, 158–159, 222 skills, teaching, 238–239
ESCAPE-NOW, 159–160, 162, 166, 167, 222 Goal attainment, 55, 235, 239–240
Evaluation standards, 120–122 Goal-directed action, 218, 231, 232
quality of evidence, 121 Goal-discrepancy analysis, 234
relevance of evidence, 121–122 Goal-generation process, 234
robustness of evidence, 121 Goal setting, 235, 238–239
Evidence Go Talk 9, 271
operational definition of, 120 Gratitude, 191
into practice, systematic approach to translating Group home managers, 87
dialog and partnership, 122 Guardianship, 247–256
quality of evidence, 121
relevance of evidence, 121–122
robustness of evidence, 121 H
guidelines for, 122 Happiness, 5, 18, 330–331
Evidence-Based Practices (EBPs), 119–120 in challenging work, finding, 90–91
operational definition of, 120 HCBS, See Home and Community-Based Waiver Ser-
Evidence-gathering strategies, 120, 121 vices (HCBS)
Exercise, 101, 174–177 Health and wellness, 69
Exergaming, 177, 182 role of Self-Determination Theory, 289–290
Expressive emotions, 19 Heart rate monitors, 174
Home and Community-Based Waiver Services (HCBS),
31–32
F Honesty, 190
FA. See Functional Analysis (FA) Hope, 191, 314–315, 321
Fairness, 190 Human functioning, 16–17
Family support, 7 multi-dimensional framework of, 39–40
FBA, See Functional Behavior Assessment (FBA) Humanity, 189, 190
Feeblemindedness, 14, 24 Humility, 190
Flexibility, 312 Humor, 191
Index 377

Hypersomnia, 180 mathematical-logical, 193

social, 190, 193
spatial, 193
I Interactive Behavioral Therapy (IBT), 195–196
IBT, See Interactive Behavioral Therapy (IBT) Interests, 111
ICD, See International Classification of Diseases, Injuries, Internal attribution beliefs, 153
and Causes of Death (ICD) International Classification of Diseases, Injuries, and
ICF, See International Classification of Functioning, Causes of Death (ICD)
Disability, and Health (ICF) ICD-10, 14–15
ICIDH, See International Classification of Impairments, ICD-9, 14–16
Disabilities and Handicaps (ICIDH) International Classification of Functioning, Disability, and
IDD, See Intellectual and Developmental Disabilities Health (ICF), 16–17, 27
(IDD) International Classification of Impairments, Disabilities
IDEA, See Individuals with Disabilities Education Act of and Handicaps (ICIDH), 15, 16, 27
2004 (IDEA) Interpersonal decision making, role of positive psychol-
Idiot, 13–14 ogy in, 145–167
IEP, See Individualized Education Program (IEP) applications of, 162–163
ILP, See Individual Life Plan (ILP) cognition, 149
Impulsivity, 154 disability-specific and age-specific patterns, 154–158
Inattention, 174 emotions, 150–154
Inclusion, 27, 127, 365 motivation, 149–150
Inclusive education, 29 outcomes
Inclusive Service Delivery (ISD), 179 adolescents with IDD, interventions to support,
Independence, 116 161–162
Independence and skill building, 101 adults with IDD, interventions to support, 158–161
Individualized Education Program (IEP), 39, 219, 221, Pathways Model of Decision Processing, 146–148
225 personality, 150–154
Individualized routines, 101 research and practice, new directions for, 163–167
Individualized support plans, See alsoMindfulness-Based Interpersonal friendship, 133–137
Individualized Support Plan (MBISP), 38, 41 Interpretive Guidelines for ICF/IID State Operations
Individualized supports, 29 Manual, 98
Individual Life Plan (ILP), 100 Intervention integrity, 173
Individual Support Plan (ISP), 99 Intrinsic motivation, 285–291
distinguished from Mindfulness-Based Individualized Involuntary retirement, 341–342
Support Plan, 100, 101–102 ISD, See Inclusive Service Delivery (ISD)
Individuals with Disabilities Education Act of 2004 ISP, See Individual Support Plan (ISP)
(IDEA), 32, 33, 39, 82, 219, 221, 225 Israel
Individuals with IDD, See Intellectual and Developmental Supported Decision-Making, 254
Disabilities (IDD) Item Response Theory (TRT), 208
Institutionalized schedule, 101
Institutional life, 26
Intellectual and Developmental Disabilities (IDD), 66–70 J
and character strength, 194–196 Job coaches, 87
CREATE engagement plans/opportunities for, Job Knowledge Survey, 315
107–111 Job security. See also Career; Employment, 347
and goal attainment, 235 Judgment, 190
and goal setting, 235 Justice, 189, 190
parents, role of, 70–72
and problem solving, 219–220
and retirement, 343–344 K
and self-advocacy, 220–222 Kansas University Center on Developmental Disabilities,
Self-Determination Theory, 290–291 256
and self-regulation, 236–237 Kindness, 190
support providers, role of, 72–74
teachers, role of, 74–75
Intellectual disabilities, 361–362, 363 L
Intellectual functioning and adaptive functioning, rela- Language functioning, 164
tionship between, 202–203 Late life transitions, among people with intellectual and
Intelligence, 154, 164 developmental disabilities, 360
378 Index

Leadership, 190 on soles of the feet procedure, 67–70

skills, 225–226 Mental deficiency, 4, 14, 24
LEAP model, 134 Mental health, 7
Learning disabilities, 82 Mental retardation, 4, 14, 24, 202
Legal rights, 224–225 defined, 15–16
Leisure Mental subnormality, 4
friendship, 132–133 MES, See Mindful Engagement Support (MES)
and mainstream employment, 347 Micro Board, 251
skills, 177–179, 182 Microswitch-aided programs, 274–276
Life course perspective, to aging with intellectual and Microswitch-based programs, 262, 264–267
developmental disabilities, 359–360 to foster assisted ambulation, 267–269
Life design dimensions, 319–321 to increase adaptive responses and curb problem
Life expectancy, 15 behaviors or postures, 270–271
Life Orientation Test, 316 Microswitches, 177, 261–262, 264–266, 268–271, 275
Life Orientation Test-Revised (LOT-R), 43 Mindful engagement, 99
Life Outcomes Through Integrated Systems (LOTIS), 86, Mindful Engagement Support (MES), 107, 110
91 Mindfulness, 4, 89, 98–99
Life preparedness, 318–319 in action, 99–100
Life story work, 365–366 -based programs, 65–75
Locus of control, 153, 154, 164 Mindfulness-Based Cognitive Therapy (MBCT), 66–67,
Loneliness, 127 71
Long-term goals, 106 Mindfulness-Based Individualized Support Plan
LOTIS, See Life outcomes through integrated systems (MBISP), 97–111
(LOTIS) brief instructions for developing, 102, 104–107
Love, 7, 190 active treatment goals, 105–107
Love of learning, 190 person information, 104–105
rights restoration, 107
service plans, 107
M team leader monthly update, 107
Mainstream employment team meeting update, 107
attitudes about retirement, 346 distinguished from individual support planning, 100,
job security, 347 101–102
part-time work, 347 Interpretive Guidelines for ICF/IID State Operations
retirement interventions, 351–352 Manual, 98
social connections and leisure participation, 347 peoples with intellectual and developmental disabili-
travel issues, 347 ties, supporting
views about retirement finances, 346–347 CREATE engagement opportunities, 107–109
Making friends, 364 CREATE engagement plans, developing, 109–111
MAPS, See McGill Action Planning System (MAPS) template, 100, 102, 103–105
Massachusetts Mindfulness-Based Positive Behavior Support (MBPBS),
Supported Decision-Making, 255 73
Mastery goals, 232 Mindfulness-Based Stress Reduction (MBSR), 65, 66, 71
Mathematical-logical intelligence, 193 Mindfulness-Based Therapy for Autism Spectrum Disor-
Mature defenses, 6 der (MBT-AS), 66–67
MBCT, See Mindfulness-Based Cognitive Therapy Mindful Observation of Thoughts meditation procedure,
(MBCT) 69
MBISP, SeeMindfulness-Based Individualized Support Mobile health (mHealth), 69
Plan (MBISP) Moderate-to-Vigorous Physical Activity (MVPA), 175,
MBPBS, SeeMindfulness-Based Positive Behavior Sup- 182
port (MBPBS) Motivation
MBSR, SeeMindfulness-Based Stress Reduction (MBSR) autonomous, promoting, 89
McGill Action Planning System (MAPS), 97 intrinsic, 285–291
Mediation by significant others, 136–137 role in interpersonal decision making, 149–150
Medicaid MSLSS, See Multidimensional Life Satisfaction Scale
Home and Community-Based Waiver Services, 31–32 (MSLSS)
Medical-Institutional Paradigm, 24–25 Multidimensional Life Satisfaction Scale (MSLSS), 43
advances in prevention and instruction, 25 Multipurpose institutions, 25
Medical model, 14–16 MVPA, SeeModerate-to-Vigorous Physical Activity
Meditation (MVPA)
Index 379

N PEER-DM (Peers Engaged in Effective Relationships—

National Guardianship Association (NGA), 250 Decision-Making) curriculum, 161, 162, 166,
National Institute of Mental Health, 5 167
National Resource Center for Supported Peer leaders, 135
Decision-Making (NRC SDM), 254–255 Peer-mediated intervention, 133–136
NCBC, See Next Chapter Book Club (NCBC) PEERS, 136, 138
Next Chapter Book Club (NCBC), 132 People First, 335
NGA, See National Guardianship Association (NGA) Performance Cue System (PCS), 302
Night awakenings, 180 Performance goals, 232
Non-compliance, 174 Performance measurement, 83
Normalization, 25, 49–50, 85 PERMA framework, 343
guidelines, 26 Perseverance, 190
Normalization-Community Services Paradigm, 25–27 Personal agency beliefs, 154
deinstitutionalization and community services, 25–27 Personality, role in interpersonal decision making,
normalization, 25 150–154
Nowicki-StricklandInternal-External Scales (ANS-IE), 43 Person-centered planning, 97, 98, 364, 365
NRC SDM, See National Resource Center for Supported Person-environment fit models of disability, 17, 28–29,
Decision-Making (NRC SDM) 39, 145
Nuggets of Optimism and Hope to School, 322 Person information, 104–105
Perspective, 190
Phenylketonuria (PKU), 25
O Physical well-being, 179–181, 183
Occupational Knowledge Interview, 315–316, 322 Picture cues, 180
Occupational Mindfulness (OM), 73–74 Picture prompting strategies, 305
Office of Special Education Programs (OSEP), 50 PKU, See Phenylketonuria (PKU)
OM, See Occupational Mindfulness (OM) Planning Alternative Futures with Hope (PATH), 365
Optimal experience, 5 Planning for retirement, 342
Optimism, 5, 18, 312, 315, 321 Policies, retirement, 342–343
in challenging work, finding, 90–91 Positive Behavior Interventions and Supports (PBIS),
Optimism-Pessimism Test Instrument, 316 81–92
Organizational friendship, 130–133 in context, 87–89
Organizations description and evolution of, 83–85
positive culture and consistent expectations in, creat- envisioning, 81–83
ing, 90 foundations of, 85
Organization-Wide Positive Behavioral Interventions and functional behavior assessment, 87–89
Supports (OWPBIS), 84, 90, 91 future research and practice, directions for, 91–92
OSEP, See Office of Special Education Programs (OSEP) happiness and optimism in challenging work, finding,
Outcomes, operational definition of, 120 90–91
Outerdirectedness, 291 positive culture and consistent expectations in orga-
OWPBIS, SeeOrganization-Wide Positive Behavioral nizations, creating, 90
Interventions and Supports (OWPBIS) across settings, implementing, 85–87
strengths based approaches for team members, pro-
moting, 87
P Positive behavior support
Palliative care, 15 building positive, healthy, inclusive communities
Paradigmatic shifts, 23 with, 81–92
Parental friendship, 136–137 Positive emotions, 189
Parent–child interactions, 88 Positive functioning, 18–19
Participation, 101 Positive, healthy, inclusive communities with positive
Participation restrictions, 16 behavior support, building, 81–92
Part-time work, 347 envisioning, 81–83
PATH, See Planning Alternative Futures with Hope functional behavior assessment, 87–89
(PATH) future research and practice, directions for
Pathways Model of Decision Processing, 146–148 moving research into practice, 91–92
PBIS, See Positive Behavior Interventions and Supports quality of life outcomes, enhancing, 91
(PBIS) happiness and optimism in challenging work, finding,
PCS, See Performance Cue System (PCS) 90–91
Pedometers, 174
380 Index

interventions and supports Ptolemaic paradigm, 23

description and evolution of, 83–85 Public policies, 31–33
foundations of, 85 Punishment vs. reward, 166
PBIS across settings, implementing, 85–89 PYD, See Positive Youth Development (PYD)
positive culture and consistent expectations in orga-
nizations, creating, 90
strengths based approaches for team members, pro- Q
moting, 87 QIDP, See Qualified Intellectual Disabilities Professional
Positive identity, 139–140 (QIDP)
Positive institutions, 189 QOL, See Quality Of Life (QOL)
Positive mindset, 314–315 Qualified Intellectual Disabilities Professional (QIDP),
Positive psychology, 3–9 107
alignment with disability field, 7 Quality enhancement strategies, 122
emergence of, 5–6 Quality Of Life (QOL), 7, 115–123
to intellectual and developmental disabilities, assess- application fidelity, 117–118
ment of, 37–44 conceptual model, 116–117
pillars of, 5 domains of, 116–117
and quality of life, similarities between, 116 enhancement strategies, 117–119
role in interpersonal decision making, 145–167 evaluation standards, 120–122
work and evidence-based practices, establishing, 119–120
happiness, 330–331 evidence-gathering strategies, 120, 121
resiliency, 332 evidence into practice, systematic approach to trans-
social capital, 331–332 lating, 122
well-being, 331 moderator and mediator variables, 117, 118
Positive reinforcement, 178, 180, 181 outcomes, 91
Positive relationships, 189 personal outcomes, 119
Positive traits, 189 and positive psychology, similarities between, 116
Positive Youth Development (PYD), 311–312 research, 118–119
Post-intervention maintenance, 174 Quality Trust for Individuals with Disabilities, 250–251,
Postures, microswitch-based programs for, 270–271 256
Power of Attorney, 251
Practices, operational definition of, 120
Preadolescents, career assessment instruments for, R
315–316 REACT, See Recreation Experience Activity Club for
Preference assessment, 108, 178 Teens (REACT)
Preschool friendship, 134 Reaction, 101
Prevention, 25, 108, 183 Recreational activities, 179
Problem behaviors, 72, 86, 87, 270–271, 275 Recreation Experience Activity Club for Teens (REACT),
Problem-solving, 18, 50 132
defined, 217–218 Regret prevention, 108
general instruction, 222–223 Rehabilitation, 7
intellectual and developmental disabilities and, Rehabilitation Act
219–220 Section 504, 225
interventions to promote, 222 Reinforcement, 108, 111
Professionals friendship, 137 positive, 178, 180, 181
Proloquo2Go software, 272 Relatedness, 286
Prompt-fading, 178 Reminiscence, 365–366
Prompting, 178, 298–299 Residential friendship, 130
picture, 305 Resiliency, 332
strategies, 299 Response, 101, 108, 111
video, 303–304 Retirement, 339–352
Prudence, 190 age, 341, 348
Psychological well-being, 18, 19, 341 defined, 340
Psychology delayed, 342
behavioral, 174 importance of, 340
counseling, 38 involuntary, 341–342
deficit-based models in, 4–5 of peoples with intellectual and developmental dis-
positive, See Positive psychology abilities, 343–344
Psychosis, 155 age of retirement, 348
Index 381

effective approaches to, 348–351 intellectual development and disabilities, 290–291

mainstream employment, 346–347 work, 290
sheltered employment, 344–346 basic psychological needs, 286–287
planning for, 342 Self-Determined Career Development Model (SDCDM),
policies about, 342–343 54–55, 59–62
views about, 342, 344 Self-Determined Learning Model of Instruction (SDLMI),
voluntary, 341–342 54–58, 62, 220, 222, 237
Revised Career Awareness Survey, 315 Self-directed approaches, 133
Rewards, 177 Self-Directed Individualized Education Program (SDIEP),
ability to forecast, 154 226
vs. punishment, 166 Self-directed supports, 31–32
Reward-seeking, 157 Self-direction, 83
Right mindfulness, 99–100 Self-efficacy, 153
Rights restoration, 107 Self-esteem, 153
Risk perception, 164 Self-evaluation, 236
Risk taking, 157, 166 Self-evaluation skills, teaching, 243
Role-playing, 223 Self-injury, 87
Rumination disorder, 180 Self-instruction skills, teaching, 240–241
Self-knowledge, 312
Self-monitoring, 180, 236
S skills, teaching, 241–243
Sati, 65, 99 Self-regulatedproblem-solving skills, 220
Satisfaction With Life scale (SWL), 43 Self-regulation, 190, 312
Scales of Independent Behavior—Revised (SIB-R), 207 defined, 234
School-Wide Positive Behavioral Interventions and Sup- of emotions, 161
ports (SWPBIS), 84, 131 intellectual and developmental disabilities and,
SDCDM, SeeSelf-Determined Career Development 236–237
Model (SDCDM) multicomponent strategies, 236–237
SDIEP, SeeSelf-Directed Individualized Education Pro- skills, teaching, 240–243
gram (SDIEP) strategies, 236
SDLMI, SeeSelf-Determined Learning Model of Instruc- theory, regulatory functions in, 234–235
tion (SDLMI) Self-reinforcement, 236
SDM, See Supported Decision-Making (SDM) Service plans, 107
SDS, See Society for Disability Studies (SDS) SGDs, SeeSpeech-Generating Devices (SGDs)
SDT, SeeSelf-Determination Theory (SDT) Sheltered employment
Self-advocacy attitudes about retirement, 344–345
defined, 218–219 retired employees, views of, 346–347
intellectual and developmental disabilities and, self-determination about retirement, 346
220–222 views about retirement finances, 345
movement, 50 Short-term goals, 106–107
promoting, 224–227 Signature strengths, promoting, 193
skills, general, 219, 220–221, 224–226 Simulated environments, 301–302
through student involvement, 219, 221–222, 226, 227 Simulation, computer, 299–301
Self-Advocates Becoming Empowered, 335 SIS, See Supports Intensity Scale (SIS)
Self-appraisal, 218 SIS-Adult Version (SIS-A), 41
Self-concept, 154 SIS-Children’s Version (SIS-C), 41
Self-determination, 5, 31, 49–62, 83, 321 Sleep hygiene, 180
on academic and transition outcomes, impact of, Smoking, 69
55–62 Social belonging, 154
assessment, 41–42 Social capital, 331–332
Causal Agency Theory, 52–62 Social competence, 203
defined, 51, 231 Social-connectedness, 127
in intellectual and developmental disability field, Social connections, and mainstream employment, 347
emergence of, 49–52 Social-ecological model, 16, 39, 82, 255
about retirement, 346, 349, 351 Social intelligence, 190, 193
Self-Determination Inventory System, 42 Social justice, 321
Self-Determination Theory (SDT), 49, 247, 285 Social knowledge, 138–139
applications of, 287–291 Social learning theory, 174
health and wellness, 289–290 Social model, 16
382 Index

Social networks Supports Intensity Scale (SIS), 40–41

and aging, 361 Adult Version, 40
interventions, 364–365 Children’s Version, 40
of older peoples with intellectual disabilities, 361–362 Supports Paradigm, 24, 27–33
of peoples with intellectual disabilities, 361 inclusive education, 29
Social participation, 116 person-environment fit models, 28–29
Social problem-solving skills, 223 public policies, 31–33
Social validity, 174 self-determination, 31
Social well-being, 18, 127, 130, 341 Supported Employment, 30–31
Societal friendship, 129–130 supported living, 29–30
Society for Disability Studies (SDS), 139 Supports planning, 40, 43, 197, 329
Socio-ecological model, 16, 39, 145 Swimming, 176
SoF procedure. See Soles of the Feet (SoF) procedure SWL, See Satisfaction With Life scale (SWL)
Soles of the Feet (SoF) procedure SWPBIS, SeeSchool-Wide Positive Behavioral Interven-
meditation on, 67–70 tions and Supports (SWPBIS)
Solidarity, 321
Spatial intelligence, 193
Special Olympics, 132, 176 T
Speech-Fenerating Devices (SGDs), 261, 262, 278 Task analysis, 176, 178, 297–298, 301, 305
-aided programs, 276 Task demands, 109
problems in promoting communication, 271–272 Teachers, 74–75
Spirituality, 18, 191 Teachers friendship, 137
Stereotypy, 174 Teaching, 83
Strengths-based approaches assisting and, 101
to intellectual and developmental disabilities, 13–20, Team leader monthly update, 107
39–42 Team meeting update, 107
different and pathological, 13–14 Teamwork, 190, 225–226
human functioning, 16–17 Technology-aided programs
medical model, 14–16 for basic activity or assembly tasks and mobility,
self-determination assessment, 41–42 276–277
support needs assessment, 40–41 for contact or communication with distant partners,
for team members, promoting, 87 277–278
Strengths-spotting, 192–193 Technology packages, for promoting
Student involvement, self-advocacy through, 219, contact/communication with distant partners,
221–222 274
Student–teacher relationship, 87 Telehealth, 69–70, 182
Subjective well-being, 5, 19, 342 Temperance, 189, 190
defined, 18 Texas
Substance use, 180 Supported Decision-Making, 255
Support, 101 ‘The Future if Now’, 364
Supported Decision-Making (SDM) Transcendence, 189, 191
as alternative to guardianship, 247–256 Transition to Retirement (TTR) project, 340, 345,
American models, 254–255 348–351
British Columbia, 252–254 active monitoring, 349
case study, 252–254 aging, 360–361
design of, 255 implementation costs, 351
Israel, 254 inclusive practice manual, 351
next-generation research on, 256 intervention, 349
in practice, 250–252 program flow chart, 350
Supported Decision-Making Brainstorming Guide, 250 self-determination, 349, 351
Supported employment, 30–31 Travel issues, and retirement, 347
Supported living, 29–30 Treatment teams, 98
Support needs, 29 TRT, See Item response theory (TRT)
assessment, 40–41 TTR project, SeeTransition to Retirement (TTR) project
Support providers, 87, 88–89
of individuals with intellectual and developmental
disabilities, 72–74 U
Supports friendship, 137 UDL, See Universal Design for Learning (UDL)
Index 383

U.N. Convention on the Rights of Persons with Disabil- Volitional action, 52, 54
ities, 123 Voluntary retirement, 341–342
UNCRPD, See United Nations Convention on the Rights Volunteering, 340, 342
of Persons with Disabilities (UNCRPD)
United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD), 248–249 W
Article 3, 82 Walking. See also Ambulation, 177
Article 24, 82 Well-being, 116, 331
Universal design for learning (UDL), 29 emotional, 18
US Department for Health and Human Services physical, 179–181, 183
Administration on Community Living, 249–250 psychological, 18, 19, 341
US Department of Education social, 18, 127, 130, 341
Office of Special Education Programs, 50 subjective, 5, 18, 19, 342
We the People, 225
WFA, SeeWhose Future is it Anyway? (WFA)
V What Will Happen to Me?, 316
Values in Action (VIA) classification system, 6, 42–43 WHO, See World Health Organization (WHO)
VIA Inventory of Strengths, 43 Whose Future is it Anyway? (WFA), 226–227
VIA Inventory of Strengths for Youth, 43 Wisdom, 6, 189, 190
Veterans Administration, 5 Work, See Career; Employment
VGV, See Virtual Gratitude Visit (VGV) happiness and optimism in, finding, 90–91
VIA-120, 191 and positive psychology
VIA-72, 191 happiness, 330–331
VIA Classification of Character Strengths and Virtues, resiliency, 332
189–191 social capital, 331–332
VIA classification system, See Values in Action well-being, 331
(VIA) classification system role of Self-Determination Theory, 289–290
VIA Inventory of Strengths (VIA-IS), 43, 191–192, 195 World Economic Forum
VIA Inventory of Strengths for Youth (VIA-Youth), 43, Global Challenge Insight Report, 311
192, 195 World Health Organization (WHO), 82
VIA Survey, 193
Video modeling, 178, 180, 181, 302–303
Video prompting, 178, 303–304 Y
Vineland Adaptive Behavior Scale—2nd Edition YES, See Youth Empowerment Services (YES)
(Vineland-II), 205–206 Yoga, 179
Vineland Social Maturity Scale, 203 Young Children’s Hope Scale, 316
Virtual Gratitude Visit (VGV), 196 Youth Empowerment Services (YES), 131
Visions about the Future, 316, 317 Youth Life Orientation Test, 316
Vocational development, 312–313
Vocational exploration, 313–314
Voice Output Communication Aids (VOCAs), See- Z
Speech-Generating Devices (SGDs) Zest, 190