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Disability Citizenship and Community Care A Case for
Welfare Rights 1st Edition Kirstein Rummery Digital
Instant Download
Author(s): Kirstein Rummery
ISBN(s): 9781138738621, 113873862X
Edition: 1
File Details: PDF, 12.55 MB
Year: 2002
Language: english
DISABILITY, CITIZENSHIP AND COMMUNITY CARE
 For Simon and Euan,
with love, thanks and pride
Disability, Citizenship and
Community Care
A Case for Welfare Rights?

KIRSTEIN RUMMERY
University of Manchester, UK
First published 2002 by Ashgate Publishing

Reissued 2018 by Routledge

2 Park Square, Milton Park,Abingdon, Oxon OX14 4RN
711 Third Avenue, New York, NY 10017, USA

Routledge is an imprint ofthe Taylor & Francis Group, an informa business

Copyright © Kirstein Rummery 2002

All rights reserved. No part of this book may be reprinted or reproduced or

utilised in any form or by any electronic, mechanicai or other means, now
known or hereafter invented, including photocopying and recording, or in any
information storage or retrieval system, without permission in writing from the
publishers.

Notice:
Product or corporate names may be trademarks or registered trademarks, and
are used only for identification and explanation without intent to infringe.

Publisher's Note
The publisher has gone to great lengths to ensure the quality of this reprint but
points out that some imperfections in the original copies may be apparent.

Disclaimer
The publisher has made every effort to trace copyright holders and welcomes
correspondence from those they have been unable to contact.

A Library of Congress record exists under LC control number: 2001099944

ISBN 13: 978-1-138-73862-1 (hbk)

ISBN 13: 978-1-315-18465-4 (ebk)
Contents

List of Figures and Tables vi

Preface VII
Acknowledgements ix

1 The Role of Assessments in Community Care for Disabled 1

People in England from 1993

2 Social Policy, Rights and Citizenship 7

3 Community Care for Disabled People in the 1990s 25

4 Managing Demand at the Frontline: Managerial, Bureaucratic 44

and Professional Gatekeeping

5 Negotiating Barriers in the Dark? Accessing Assessments 70

6 Being a 'Competent Member' of the Community: Services 98

and Social Participation

7 Community Care Assessments in the 1990s: Citizenship 131

Denied?

8 Assessment and Care Management Policy and Practice in the 164

New Millennium: Towards a New Framework of Citizenship?

Bibliography 183
Index 194

v
List of Figures and Tables

Figures

Figure 4.1 Flow of cases for assessment and care management 46

in local authority A

Figure 4.2 Flow of cases for assessment and care management 47

in local authority B

Tables

Table 4.1 Team client groups in local authority A 45

Table 4.2 Team client groups in local authority B 46

Table 4.3 Eligibility criteria in local authority A 49

Table 4.4 Eligibility criteria in local authority B 50

VI
Preface

This book is a synthesis of theory and research which takes a critical look at
the experiences of disabled people accessing and receiving community care
services. It has its roots in a Joseph Rowntree funded research project at the
University of Birmingham in 1995-1996 which was designed to look at the
ways in which disabled people gained access to community care
assessments and services (Davis et al, 1997). The bulk of this book is based
on analysis of that study data, which comprised of two main sources:
ethnographic observations of assessment practice in six social work teams
from two local authorities; and in-depth interviews with 46 disabled people
and 16 of their family members/friends/supporters who had been through a
community care assessment. However, the ideas discussed in this book were
developed further after that study, particularly in the light of a Department
of Health funded study at the University of Manchester in 1997-1999,
designed to look at the experiences of disabled people with complex health
and social care needs who used direct payments rather than conventional
community care services (Glendinning et al, 2000).
The book develops a citizenship framework of civil and social rights,
which is based on seminal work done by Marshall (1992), Plant (1990,
1992), Lister (1995, 1997), Turner (1993a) and Doyal and Gough (1991)
among others. It uses that framework to examine the effect of the
community care assessment process on the citizenship status of disabled
people and their families. For the purposes of this book, 'citizenship status'
has three dimensions: the protection or otherwise of a person's civil and
social rights (Marshall, 1992); whether or not they are treated as and enabled
to act as 'competent members of society' (Turner, 1993a); and whether the
process facilitates or prevents disabled people's 'minimally curtailed social
participation' (Doyal and Gough, 1991). Chapters one, two and three discuss
this framework in more detail.
The ways in which frontline welfare professionals/gatekeepers/
bureaucrats (Klein et al, 1996; Lipsky, 1980) make decisions about who gets
access to community care assessments and services, and the impact of these
decisions on the citizenship status of disabled people and their families is
discussed in chapter four. The ways in which disabled people and their

vn
families experience the process of attempting to gain access to assessments
and services in the community care process is discussed in chapter five. The
remainder of the book is devoted to exploring the effects of the outcome of
the community care process on the citizenship status of disabled people and
their families, and discussing the relevance of the findings on community
care policy. It examines whether there is a case to be made for the adoption
of a welfare rights approach to community care for disabled people and their
families.

A Quick Note About Terminology

Throughout this book reference is consciously made to 'disabled people and

their families'. Whilst this is not terminology that would necessarily be used
by the people concerned, it is preferable to any of the alternatives (such as
service users, disabled and older people, carers). The people whose
experiences form the core of this book had undergone a community care
assessment of their needs, and they were mostly people with impairments
who were disabled by the social, attitudinal, physical and environmental
barriers facing them in society (Oliver, 1990), and whilst their impairments
varied they had sufficient commonality of experience to be referred to as
disabled. However, for some people their age did make a difference to how
they were treated by social services departments, and where this is the case
throughout the text they are referred to as 'older disabled people'. The term
'carers' has been largely been avoided, partly because it is problematic for
many disabled people (Morris, 1997) who point out that it ignores the fact
that many disabled people themselves have caring responsibilities, which is
supported by the evidence in the book. The phrase 'disabled people and
their families' is therefore used, with one exception. For practitioners
carrying out community care assessments there was a clear distinction
between the 'disabled person' on the one hand and the 'carer' on the other,
and this affected their practices and decision making in several key ways
which are discussed in the relevant chapters. Where it is necessary for
clarity to highlight these differences (essentially the difference between the
person who is nominally the focus of the assessment and the rest of the
family) the person not the subject of the assessment from the practitioner's
point of view is called the 'carer'.

Vlll
Acknowledgements

Most good social policy research and theory is the result of years of work
done by hardworking teams and this book is no exception to that. I am
indebted to Ann Davis and Kathryn Ellis who designed the original Joseph
Rowntree project and were very generous in allowing me to use the data to
develop and test my own theories. I also owe personal and intellectual
thanks to colleagues at the National Primary Care Research and
Development Centre, University of Manchester who helped me develop my
ideas using their data, particularly Caroline Glendinning, Sally Jacobs,
Shirley Halliwell and Ruth Young, and to Lisa Tilsley who gave invaluable
technical assistance with the manuscript. An intellectual debt is owed to the
participants of the various conferences and ESRC seminars at which I
discussed the ideas developed in this book.
This book would not have been possible without the involvement of
the practitioners who allowed me to observe their practice and the disabled
people and their families who took part in interviews. Their insights still
inform my work today and I am very grateful. Finally, personal thanks are
owed to Simon and Euan Lippmann, without whose co-operation this book
would never have left the ground, and Wendy Macdonald and the Bitches
on Diets who gave it wings, and Caroline and Adam Povey who babysat and
stocked up the fridge when it mattered the most.

IX
1 The Role of Assessments in
Community Care for
Disabled People in England
from 1993

Throughout the 1980s and 1990s many welfare states, particularly those
Esping-Anderson characterised as liberal (Esping-Anderson, 1990) such as
the UK, found themselves grappling with the issue of rising demand for
state-provided benefits and services. At the same time criticism of the way
in which the state provided benefits and services began to be voiced by
users of those services, such as people with mental health problems,
disabled and older people and those with learning disabilities (Oliver and
Barnes, 1993; Rogers et al, 1993; Walmsley, 1993; Bell, 1987). The state
faced a twin challenge: how to curb rising expenditure while meeting the
needs of its citizens. This book is an exploration of the outcome of one
state's attempt to tackle those challenges within a fairly narrow context. It
focuses on the implementation of one element of community care policy in
England in the 1990s: the way in which disabled people attempted to gain
access to social care services and support from their local authority social
services departments.
In 1990 the British government passed the 1990 NHS and
Community Care Act (NHSCCA), a move which represented a substantial
shift in policy and practice within the British welfare state. Prior to its
implementation access to residential social care services was controlled
through the social security benefits system so that disabled people on low
incomes could reclaim the cost of board and lodging in residential care from
the state. The Griffiths Report (1988) commissioned by the then
Conservative administration found that this led to a substantial rise in the
numbers of people entering residential care and acted as a disincentive to
the development of services aimed at people living in their own homes.
Both results were politically unacceptable to a Conservative administration

1
2 Disability, Citizenship and Community Care

concerned with curbing public expenditure and promoting individual over

state responsibility for the provision of social care.
In 1989 the Department of Health issued its blueprint for service
change, Caring for People (Department of Health, 1989). It advocated the
introduction of a 'quasi-market' (Le Grand and Bartlett, 1993) in social
care, designating local authority social services departments as those
responsible for purchasing residential and domiciliary care services for
disabled and older people from a mixed market of statutory and private
sector providers. It also set up the functions of assessment and care
management as the 'cornerstone' of its new policy (Department of Health,
1990: 3).

The Cornerstone of Community Care

As far as the Conservative administration and the Griffiths Report was

concerned, the rise in public expenditure on residential care services which
resulted from the social security system rules (Laing, 1993) needed to be
addressed. The proposed solutions set out in the 1989 White Paper included
the driving principle that the provision of services to disabled and older
people should be needs-led rather than based on income. Local authority
social services departments were therefore firstly allocated the
responsibility for assessing the needs of individual disabled and older
people who appeared to need their services (s47 NHSCCA). Secondly, they
became responsible for the process of care management, whereby a care
manager put together a package of services from a variety of providers to
meet that individual's needs, a process developed following innovative
pilots in Kent, Gateshead and Darlington (see for example Challis et al,
1995).
The NHSCCA did differ in some of its key policy objectives from the
original 1988 Griffiths Report (Means and Smith, 1994) but the policy of
using assessment and care management as a tool to foster needs-led services
remained intact. It was recognised that the implementation of many of the
provisions of the 1990 Act would be difficult for local authorities and it was
not until 1993 that the act was folly implemented in England and Wales.
Positioning the responsibility for assessment and care management
with local authority social services departments had several implications for
the way in which disabled and older people gained access to residential and
domiciliary social care services. Firstly, notwithstanding the criticisms of
residential services (Townsend, 1962; Goffman, 1961) not least those
coming from disabled people themselves (Morris, 1993b; Brisenden, 1985;
 The Role ofAssessments in Community Care for Disabled People 3

UPIAS, 1976) the introduction of assessment was the introduction of an

additional level of gatekeeping and removed from disabled people the
'right' to access such care (Glendinning, 1991). Secondly, it explicitly
vested in social services employees (rather than disabled people
themselves) the power and discretion to make potentially significant
decisions about who should be allowed to access which services. Disabled
citizens would have to go through an 'assessment' undertaken by social
services before they could access residential or domiciliary care services.
Thirdly, it gave local authorities the discretion to design and implement
their own assessment and care management systems, which, because local
authorities in England and Wales are funded partly through local taxation,
meant that spending and service priorities, and hence assessment and care
management systems, varied considerably across the country (Audit
Commission, 1996).

Disabled Citizens

If assessment and care management were the 'cornerstone' of community

care policy (Deartment of Health, 1989) and practice, what building or
structure were they meant to be supporting? Chapter three discusses in some
depth the conflicting aims and objectives inherent in the 1990 community
care changes, particularly how these conflicts were played out within the
context of assessment policy and practice. As the changes were
implemented it became increasingly clear that frontline practitioners
carrying out assessments were having to 'square the circle' of these conflicts
within their daily practice (Ellis, 1993). The aims and objectives of
community care policy therefore have an impact on the way in which
disabled people can access residential and domiciliary care services. The
cornerstone appeared to be designed to support several structures at the
same time, most notably the push to curb expenditure and to encourage the
provision of informal family support rather than statutory services.
This book is concerned with the citizenship status of disabled people
and the way in which statutory processes (in this case the way in which
disabled people access a community care assessment and thus services) can
affect this status. The citizenship framework used throughout this book will
be discussed in more depth in chapter two. In summary it is developed from
Marshall's seminal essay (Marshall, 1992) which argued that citizenship
was made up of political, civil and social rights granted to individuals to
both ameliorate the power of the state and make income inequalities and
class distinctions less important. Turner (1993a) maintained that people
4 Disability, Citizenship and Community Care

were defined as being citizens if they were considered to be 'competent

members of society' and that the 'various social arrangements
whereby...benefits are distributed to different sectors of society' (Turner,
1993a: 2-3) was of prime concern to people's citizenship status. Within
community care policy post 1990 it is the assessment process which is
designed to distribute the 'benefits' of social care services to disabled
people. This book examines the assessment process from a citizenship
perspective and ask whether it protects or enhances, or acts as a barrier to
disabled people's status as 'competent members of society', how it affects
their civil and social rights, and whether it enables or prevents people from
participating in society.
However, protecting or enhancing the citizenship status of disabled
people was never one of the explicit or implicit aims of community care
policy. No reference is made throughout the Griffiths Report, White Paper
or legislation to citizenship, rights or any other key terms associated with
citizenship, although phrases such as 'promoting choice and independence'
'involving users' and so on do appear throughout the policy and practice
recommendations (Department of Health, 1989; SSI/SSWG, 1991). The
1990 community care changes were drafted with the stated intention of
improving the lives of those who received social care services, but such
intentions were not necessarily constructed within a citizenship framework.
Alongside the structural changes to social care services and the procedural
changes to the way in which people accessed those services a change to the
ethos and driving values of social services departments was intended to take
place. Disabled people were to be recast in the role of 'consumers' of
services, experiencing 'empowerment' through the introduction of market
mechanisms into social care services and increased independence through
needs-led, domiciliary-based services.
Chapter three will discuss the limitations of this marketised approach
in empowering the consumers of social care services. However, it is not the
aim of this book to examine the success or failure of the 1990 community
care changes to create consumerist improvements for users of social care
services. There have been many studies which have focused on the
limitations of choice offered to users by the introduction of consumerist
elements to social care (see for example Wistow et al, 1996; Baldock and
Ungerson, 1993; Hardy et al, 1999; Barnes and Prior, 1995). There have
also been studies which focus on the outcome of community care policy
which have taken an analysis closer to that used in this book: i.e. the extent
to which services have offered users independence and control (see for
example Morris, 1993a, 1993b).
Few studies have adopted an explicit citizenship framework to
 The Role ofAssessments in Community Care for Disabled People 5

analyse the impact of the community care changes. In part this is because
the language and normative core of the policy had an explicitly consumerist
rather than citizenship focus (Bynoe, 1996). It is also rarer to see an analysis
that is explicitly citizenship centred within a political system that does not
have a written constitution i.e. where the relationship between individuals
and the state is subject to rules laid down in statutory and common law
rather than one in which there is an explicit single document delineating that
relationship. This is perhaps why disabled people themselves have been
slower to model themselves as citizens accessing rights than, for example,
in the United States (Driedger, 1989) where campaigns for income and
services for disabled people have been linked to civil rights and anti
discrimination campaigns. Where disabled people have attempted to use the
language of rights to highlight shortcomings in community care provision
this has tended to backfire, as in the high profile Gloucestershire ruling
where it was decided that social services departments had a duty to take
resources into account when assessing the needs of disabled people,
reaffirming that disabled people do not have an automatic right to access
social care services (Drewett, 1999).
Nevertheless, simply because disabled people do not have a
recognisable automatic right to access services does not mean that they do
not have 'rights' within the assessment process, nor that the implementation
of the 1990 community care changes does not have any bearing on their
citizenship status. One of the most important pre-existing rights that the
NHSCCA upheld was the right (granted under the 1986 Disabled Persons
(Services, Consultation, Representation) Act) for disabled people to access
an assessment of their needs. In fact, s47 of the NHSCCA actually extended
the duty on social services departments to assess the needs of anyone
appearing to need their services, not just disabled people. Moreover, as will
become clear in chapter two, within a Marshallian approach to citizenship it
is entirely consistent that access to resources should be rationed by welfare
professionals while at the same time individual citizens have the 'right' to
access resources to meet their needs - the fact that it is contingent on the
availability of resources does not make it not a 'right'.

Citizenship and Community Care: The Aims of This Book

This book therefore attempts to address the balance by using an explicit

citizenship framework to critically analyse the impact of the NHSCCA on
the lives of disabled people. It examines the effect of the assessment process
on the citizenship status of disabled people by asking whether their civil and
6 Disability, Citizenship and Community Care

social rights are threatened or protected by it. How do frontline welfare

professionals decide who gets access to an assessment and social care
services, and how do these decisions affect the social participation or
exclusion of disabled people and their families? How do disabled people
and their families experience attempts to access an assessment, and then
within the assessment to negotiate their needs and access to services and
support to meet those needs? What effects does the outcome of the
assessment process (i.e. the services, equipment and support - or lack of it -
received) have on the social participation or exclusion of disabled people
and their families? And what might the impact of an explicitly citizen-
friendly community care policy - one based on welfare rights - be on social
services departments, disabled people and their families?
2 Social Policy, Rights and
Citizenship

Since Marshall's seminal essay on the theme (Marshall, 1992), the nature of
citizenship has pre-occupied social policy analysts. In particular, Marshall's
concept of social citizenship has been revisited by academics in response to
the critique of the welfare state from the 'New Right'. This chapter will
briefly outline some of the current debates on social citizenship and
examine whether it is a useful theoretical tool to understand disabled
people's relationships with social services departments as the latter
undertake the assessment and care management tasks discussed in the
previous chapter.

Social Citizenship

The basic definition of citizenship used in this book, which encompasses

social citizenship, stems from Turner's analysis of the relationship between
individuals, their rights and entitlements, and the policies and practices
which dictate whether and how individuals can claim those rights and
entitlements (Turner, 1990, 1993a, 1993b). He outlines his theory of
citizenship thus:

Citizenship may be defined as that set of practices (juridical,

political, economic and cultural) which define a person as a
competent member of society, and which as a consequence
shape the flow of resources to persons and social
groups...Citizenship is concerned with (a) the content of social
rights and obligations; (b) with the form or type of such
obligations and rights; (c) with the social forces that produces
such practices; and finally (d) with the various social
arrangements whereby such benefits are distributed to different
sectors of society (Turner, 1993a: 2-3).

7
8 Disability, Citizenship and Community Care

Turner's formulation is a development of ideas first discussed by

Marshall in his seminal 1950 essay Citizenship and Social Class (Marshall,
1992). Marshall saw the concept of citizenship as part of the evolution of
nation states. The nineteenth century (in Western Europe) saw citizenship
being separated into political and civil citizenship, with the introduction of
the franchise to a wider range of the population than the landed gentry.
However, neither political nor civil citizenship were available universally
until the twentieth century.
The evolution of social citizenship is, according to Marshall, a more
recent phenomenon. Since the Elizabethan Poor Law, social rights have
been detached from the status of citizenship. In fact, the protection of
charity and a notion of social rights was only relevant for those excluded
from full citizenship, such as women, children and those living in poverty.
It is only with the development of a 'universal' welfare state that the concept
of social citizenship acquires any real meaning, as it is only the welfare state
which gives citizens access to social rights which do not compromise their
citizenship.
For Marshall, 'citizenship is a status bestowed on those who are full
members of a community' (Marshall, 1992: 18). He failed, however, to
discuss fully what he meant by 'full members' and 'community', concepts
which will be discussed further below. Full citizenship was not, he argued,
limited by the inequalities of social class. Indeed, the function of the social
rights bestowed by the welfare state, and this full social citizenship, was
meant to undermine the inequalities inherent in the class system. Barbalet
has argued that:

the issue of who can practice citizenship and on what terms is

not only a matter of the legal scope of citizenship and the
formal nature of the rights entailed in it. It is also a matter of
the non-political capacities of citizens which derive from the
social resources they command and to which they have access
(Barbalet, 1988: 1).

The gaining of social rights is therefore vital for any individual or group
claiming the status of citizenship.
The function of social rights was not, however, to equalise income
and so remove class inequalities. Marshall maintained that 'equality of
status is more important than equality of income' (Marshall, 1992: 33). The
fact that each citizen had equal 'claim rights' (rights to access resources)
against the welfare state, depending on need, was intended to create a
universal citizenship while being reconciled to an unequal society. Turner
 Social Policy, Rights and Citizenship 9

points out that this meant the institute of citizenship 'functioned to

ameliorate the condition of the working class without transforming the
entire property system'(Turner, 1993b: 177).
Barbalet summarises Marshall's thinking thus: 'Advances in the form
of citizenship are likely to leave class structures intact, although class
loyalty and class resentment may be affected by the removal of particular
disadvantages' (Barbalet, 1988: 5). Dahrendorf has asserted that 'whatever
citizenship does to social class, it does not eliminate either inequality or
conflict. It changes their quality' (Dahrendorf, 1996: 42). This suggests that
Marshall may have been disingenuous in stressing the way that citizenship
rights do not substantially alter class relations. While the welfare state in the
UK has failed to substantially attack inequalities and poverty, it has
contributed to the dramatic social changes which have in turn affected
social, political and civil structures over the last fifty years (Lister, 1990;
Culpitt, 1992). Nevertheless, Marshall was very clear that his concept of
social rights did not necessarily encompass the right to any particular
benefits or services.
Marshall illustrated his thesis by pointing out that every citizen had
the right to be registered with a doctor. However, there is no accompanying
right to any medical treatment or services - no citizen is guaranteed this his
ailments will be properly cared for or that he will receive any particular
treatments (I am using the male pronoun advisedly in this section, as
Marshall did not include any concept of gendered citizenship in his
analysis). Nevertheless, the formation of the National Health Service was
founded on the principle that each citizen had to the right to access health
care according to their needs, although it did not give citizens guaranteed
access to any particular services. Therefore, the main social rights of
citizens were the rights to equality of opportunity, rather than equality of
outcomes.
The formulation of the concept of social rights included a concept of
the duties and obligations accompanying those rights. Marshall pointed out
that 'if citizenship is invoked in the name of rights, the corresponding duties
of citizenship cannot be ignored' (Marshall, 1992: 41). Thus political
citizenship is complemented by the duty to engage in the political process
(hence the legal duty, in the UK, for citizens to ensure that their names are
on the electoral role). Civil citizenship comes with various duties not to
infringe the civil code (which is why prisoners are not entitled to vote).
Similarly, social citizenship is complemented by social duties, which,
within the context of the UK welfare state, has tended to mean the duty to
work (and originally meant engaging in public, paid work rather than
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