International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

Exploring Parental Perception: What Is Keeping Indian Children with

Intellectual and Developmental Disabilities out of Schools?

Rakshita Shekhar
University of Kent, UK

Abstract
Children with intellectual and developmental identifying factors that prevent their access to
disabilities (CWIDD) continue to be the most education.
vulnerable to educational exclusion in India. To Peshawaria et al [3] reported that lack of school
explore, in detail, the perceptions, experiences, transport was a hindrance. Parents in Kalita and
beliefs, expectations, desires and needs of parents, Sarmah’s study [4] cited frustration as the most
regarding the education of their CWIDD, and in common reason for pulling their disabled child out of
turn, identify barriers to the school going behavior school. A more recent governmental survey [2]
of CWIDD, semi structured interviews of 30 parents reported disability and health of the child as the
of 32 CWIDD were analyzed using thematic reasons. Interestingly, this same survey also found
analysis. Findings suggest that parents believe that poverty was the most common barrier in the
education is necessary but that mainstream schools entire study, but did not specify how common this
don’t care for their child. Although they also theme was among CWIDD.
believed that special schools understood and helped The limitation of these studies was that they were
their child, data indicated that most children who not focused on understanding barriers to school
ever attended special schools had dropped out. Lack access. Multiple studies have been undertaken on
of basic care/empathy and necessary adaptations as inclusive education by the government of India [5].
well as expulsion, were cited as reasons for pull-out But these studies have been conducted on the entire
from mainstream schools. Drop out from special cohort of children identified as having special
schools was triggered by child’s disinterest and lack educational needs, due to which the unique
of transport. This study has found preliminary educational needs of CWIDD have become invisible.
evidence that Indian parents want their CWIDD to Some studies do present data on CWIDD [1,2]. But
be educated and prefer mainstream schools over these have used non-standard and thus, unreliable
special schools. In addition, negligence, methods to identify CWIDD.
discrimination and lack of supportive learning Hence, there is a need to conduct a study focused
environments at school, prompt them to keep their on CWIDD, to find out why so many of them are out
children out of schools. Thus, this study lends of school. One important way to do this is to
further support to a fully inclusive school system. consider parents’ perspectives because they are the
Suggestions are made to ensure that the educational primary decision makers in children’s lives.
rights of CWIDD are upheld. One of the first studies exploring educational
perceptions of Indian parents having children with
disabilities was conducted in 1995 [3]. Participants
1. Introduction in this study expressed worry for their child’s future
due to low academic achievement. Researchers in
629 000 children in India have IDD. 41% of those this study went on to develop the NIMH family
between ages 5 and 19 have never attended school. needs schedule but it had only 3 basic questions on
In comparison, 18% of visually impaired, 21% of educational needs: do you need transport; do you
hearing impaired and 23.72% of children with need help deciding on a service; do you need
orthopedic disabilities have never attended school information on the effect of sending your child to
[1]. Between 2000 and 2014, 35.97% of CWIDD either a mainstream school or a special school.
were out of school. But 2.97% non-disabled children, More recent research shows that Indian parents
including 4.2% belonging to scheduled tribes and use religious, biological and situational factors to
3.24% belonging to scheduled castes, groups understand disability [6, 7]. They see education as an
identified as the most vulnerable to educational access to independence of their child [8]. They move
exclusion in India, were out of school [2]. from regular educational settings to special
These numbers clearly indicate that children with educational ones [7]. However, the objective of these
intellectual and developmental disabilities (CWIDD) recent studies was to understand the perception of
are at the highest risk of being excluded from IDD that parents held and their consequential coping
schools. However, there is lack of literature models.

Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1595

International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

Therefore, the current study was designed to the mediator would lead the researcher to the venue.
explore in detail, the perceptions, experiences and A total of 9 mediators helped: 4 of them were special
beliefs that parents held about the education of their educators, 1 was a personal acquaintance of the
CWIDD and the motivations for their decisions researcher and 1 was a home-based-education
around education, with an objective to identify teacher from the National Institute for the
barriers to school going behavior of CWIDD and Empowerment of Persons with Intellectual
understand expectations, desires and needs of these Disabilities (NIEPID). Interestingly, 3 participants
parents, which if met, could improve this behavior. voluntarily enrolled 8 of their friends into this study.
Phone numbers and/or addresses were recorded only
2. Method if the participant requested for further
communication/help regarding their CWIDD.
Purposive sampling and snowballing were Most of the participants neither possessed an
employed to recruit parents of children, of Indian email ID nor knew how to operate a computer. Due
origin, between the ages of 6 and 18, living in India to this, the information packet could not be sent
and diagnosed with IDD. 36 parents (representing 38 before the meeting. Participants who were fluent in
children) participated in this study. 6 participants English were given about 15 minutes to read through
hailed from the city of Bangalore and the rest, from the information packet. Their understanding was
Hyderabad. confirmed on the essential sections of the forms in a
They were interviewed for 45-60 minutes using sensitive manner. However, most participants did not
semi structured interviews. While 1 participant speak, read or write English. Since the cost of
revealed during the interview that their child was professional translation threatened to exceed the
over the age of 18, 1 withdrew from the study. 4 budget allocated for this project, the mediator was
participants did not provide complete information asked to translate the content of the forms and
and therefore were excluded from analysis. In the explain both pros and cons of consenting. Although
final sample, 5 children were going to a mainstream the researcher was fluent in those languages, she did
school, 7 to a special school, 11 had dropped out and not carry out this task to avoid acquiescence. If the
9 had either never attended school or attended school mediator could not be present during the interview, a
for a total of less than 6 months (This group will family member was called in. In case no family
hence be called “no school”, for convenience). An member fluent in reading and comprehending
active attempt was made not to recruit more than 2 English was present, the participant was encouraged
participants from the same school, to avoid sampling to call a trusted neighbor. They were given as much
bias. time as they needed to decide. The signed consent
The final sample consisted of a total of 26 form was retrieved only after the parent expressed
mothers and 4 fathers. 2 groups of siblings are satisfaction with the contents of the forms.
represented in the sample. For the first group, both Thematic analysis was applied to the data. After
parents gave interviews and therefore, they have the interviews were transcribed, the transcripts were
been accounted for, as 2 different participants (P13, coded line by line. They were read multiple times so
P14). In the other case, only the mother was that the researcher could immerse herself in the data.
available for an interview. Therefore, her children These were then grouped into bigger themes and
have been assigned serial numbers 11.1, 11.2 and interesting, relevant quotes were noted down. The
11.3. bigger themes with their relevant codes were penned
Ethics approval was received for this study from down on flash cards. Then, all the flash cards having
the Tizard Centre Ethics Committee, University of the same theme were grouped and read again.
Kent, UK. Common sub themes were identified and entered in a
19 interviews were conducted at homes of the Microsoft excel for each participant. These sub
participants and 11 at the child’s school. Only as themes were then regrouped into 4 major themes and
much detail as was directly relevant to the study, was some sub themes. Inevitably, some themes were
asked for. All parents voluntarily showed their omitted so that only the main points came across.
child’s disability card and shared information about The coding process was primarily completed by one
co-morbid issues. researcher. This is an acceptable practice as per
The researcher realized that differences in socio- Braun and Clarke [9,10]. It is based on the premise
economic statuses between them and the participants that thematic analysis does not produce “a real”
created a power imbalance, which could lead to picture. Rather, it is an active, reflexive, and creative
acquiescence and false consent. Therefore, no direct process undertaken by the researcher.
contact was made by the researcher prior to receiving Themes and their names underwent multiple
consent of participation. A mediator already known reiterations. The author’s dissertation supervisor
to the participant would initiate contact. If interest in guided this process.
participation was expressed, an interview would be
set up. If the venue was to be the participant’s home,

Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1596

International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

3. Reflexivity Most participants’ children either had moderate

or severe ID and some were Autistic. Challenging
This section has been written in the first person behavior and epilepsy were present in 3 children
as per recommendation in [10]. each, active drooling in 4, and sleeplessness in 1. 12
During this study, I interacted with the children had mobility issues. Thus, less than one-
participants on 2 occasions: first, during the third of the sample of children had no co-morbid
interview and the second time during the analysis issues. No information is available on whether any of
phase. the children had undergone a genetic assessment to
During the interview, I would begin with the determine the cause of disability.
question, “when did you know that there is
something atypical about your child?” This question Table 1. Demographic details
was chosen because it was probably the beginning of
their journey with IDD too. I would try to actively Interviewed Child Child Age
Code
listen and observe their body language, try not to parent Gender (years)
look away so that they knew that I was interested in P1 Mother Male 11
what they were saying. When they cried, I kept a
serious face. I would try to let them be so that they P2 Mother Male 11
knew it was ok. But there were times, although rare, P3 Mother Male 7
when I drifted. Sometimes, the disabled child would P4 Father Female 18
try to come and play with me. I would choose to take
P5 Mother Female 14
that opportunity to play. Perhaps, this influenced
what the participant was saying or not saying to me. P6 Mother Male 17
However, no participant expressed dislike for my P7 Mother Female 10
behavior. On the contrary, all of them thanked me
P8 Mother Male 18
genuinely for listening to them.
I would always come back and write a diary note P9 Mother Female 16
about the participant. Some days, I came back P10 Mother Female 14
feeling angry that I couldn’t help them immediately. P11.1 Mother Male 16
Those days, my diary notes perhaps had
interpretations that the participants themselves did P11.2 Mother Male 14
not convey. Perhaps, the questions I had asked them P11.3 Mother Female 13
during the interview, after the point I started feeling P13 Mother Male 14
helpless, were also influenced by this emotion.
P14 Father Male 13
During the transcription phase, my emotions
fluctuated and I got bored sometimes. But I would P15 Mother Male 11
return and redo those sections. P16 Father Male 10
In the analysis stage, there was a conscious effort P18 Mother Female 18
to find words to fit in with what I was feeling or
thinking because I assumed that the participants P20 Mother Female 9
would have felt the same or thought on the same P21 Mother Female 15
lines too. My supervisor helped me here, to become P22 Mother Male 6
neutral, to look more objectively, to highlight my
P23 Father Female 10
false assumptions or present sides that I hadn’t
considered before. P24 Mother Female 6
The results also reflect what I think is important P25 Mother Male 10
in the data corpus present with me. It can be possible
P27 Mother Male 16
that a replication by another researcher may bring
out some new results that I had not paid attention to. P28 Mother Female 9
Therefore, in this study, I do not claim that the P29 Mother Female 13
results are the absolute truth. But it is very likely that P30 Mother Male 16
these results portray a picture that is worth
considering more deeply, so that the educational P31 Mother Male 13
rights of the children represented in this study are P32 Mother Female 14
upheld. P33 Mother Male 13
P34 Mother Male 13
4. Results
The demographic details of participants and their Slightly more boys were present in the sample
children are given in Table 1 and Table 2. than girls. The average age of the entire sample was

Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1597

International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

12.8 years. One third of the children were aged Issues

between 13 and 14 and a similar number fell in the P33 Dropped out FBP CB
age group of 15-18 years. The average age of Mobility
P34 No School FUP
children currently in mainstream schools was 10 Issues
years; of those in special schools was 12.1 years; of Key: FBP – financially better off
FUP – financially under-privileged
those in the no school category was 12.2 years and of
CB – challenging behavior
drop outs, was 14.8 years. No school – attended school for less than 6 months

Table 2. More demographic details The average age of all the children who were
currently in school was 11.3 years. A little more than
Economic Comorbid
Code School Status half of all the children had started school before age
Category Issue
Mainstream
5. Only 2 children had never undergone any sort of
P1 FBP None educational intervention. More boys belonged to the
School
Mainstream no school and currently school going categories.
P2 FBP None Slightly more than half of those from financially
School
Special better placed backgrounds (FBP) were currently
P3 FBP None
School attending school regularly. Most children from the
P4 Dropped out FUP Epilepsy no school category had mobility issues. Most
Mobility children who had dropped out of school also
P5 Dropped out FUP
Issues presented with co-morbidities. However, only half of
P6 Dropped out FUP CB those who were currently going to school had co-
Mobility morbid issues.
P7 Dropped out FUP
Issues
Thematic analysis revealed 5 major themes.
P8 Dropped out FUP None
P9 Dropped out FUP Drooling
Special 4.1. Education is necessary
P10 FUP Drooling
School
Special This theme is related to the perceptions and
P11.1 FUP Drooling beliefs that parents held about education of their
School
Special Same as CWIDD. The sub themes and their relationships
P11.2 none
School above have been shown in Figure 1.
Drooling
Special Same as
P11.3 and mobility
School 11.1 Education Mainstream
issues
school
Mobility
P13 No School FBP
Issues
Mobility
P14 No School FBP
Issues
Special  Brain development
P15 FUP CB  Meaningful Engagement
School
 Happy Child Opportunity
Special
P16 FBP None  Independence to socialise
School  Secure Future
P18 Dropped out FUP None
Mainstream Mobility
P20 FUP
School Issues Figure 1. Theme 1 - education is necessary
Mobility
P21 No School FUP
Issues Parents almost unanimously opined that
P22 No School FUP Epilepsy
education helped in their child’s brain development
P23 Dropped out FUP None
and perceived it as an access to their secure future. A
Mainstream
P24 FBP None little over half of those currently going to school, had
School
Mobility returned to school after an average of 5 years at
P25 No School FUP home.
Issues
Mobility Participants believed that education involved
P27 No School FUP
Issues gaining knowledge or critical awareness about the
Sleepless- world, and in turn, gaining independence.
P28 No School FUP
ness ‘Education is for the self-sufficiency, to spend his
P29 Dropped out FBP Epilepsy time properly. To gain knowledge through learning -
P30 Dropped out FUP None not for his present; I would say his future.’ P2
Mainstream Mobility
P31 FBP
School Issues
P32 No School FUP Mobility

Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1598

International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

‘It would have been nice if he had education. He those currently going to school had started at age 5.3
would have been independent. But he doesn’t have years and stayed at home for 2.9 years. Children
it.’ P8 going to a special school tended to spend a little
They also observed that education was a means more time at home than those attending mainstream
of meaningful engagement and that their child liked schools – 4 years. Three quarters of the teenagers in
to learn. the sample, (balanced between genders), had
‘For her too, something to write, something to dropped out of school.
read… she wants to go to school. These things come Most parents wanted to give their CWIDD the
to her mind.’ P4 same opportunities as their non-disabled peers would
‘Due to sitting idle at home, she has become like get. But at least half of the participants reported
this. If she had been able to go to a school, she discrimination. Children were often denied
would have been better.’ P7 admission in or asked to pull out their child from a
‘Education has brought discipline and calmness. mainstream school because of the child’s disability.
Before, he would be irritated all the time.’ P16 This was truer for private schools than for
They believed that school provided an government schools. None of the parents sending
opportunity for their child to have social interactions. their child currently to a mainstream school had had
‘The regular classroom: that is where I can get this experience but almost all those whose children
socializing.’ P2 were either currently going to a special school or had
‘She has become alone at home. My other 2 dropped out, had this experience.
children are good, happy with friends.’ P9 “I told the teacher, it’s ok if he doesn’t write. I
All parents felt that by being amongst non- just want him to go to school with the other kids. She
disabled peers, their child could learn better. said, “You’ll worry, later on, why the child is not
‘Only in a regular school she can learn learning despite paying so much money. So, see
anything.’ P10 some other school meant for these kids”. P33
‘But really, when we put her in a normal school, ‘But that teacher said, the others will also
she was normal.’ P7 become mad. Don’t send her. We were pained that
For this reason, parents preferred a mainstream from our daughter, they’re so disturbed and so many
school for their child. More than three fourths of all are getting spoilt. So we keep her at home.’ P9
children who ever went to a school attended a Schools and teachers also let other children and
mainstream school first. More than one-third of those parents display acts of discrimination.
who had ever gone to a mainstream school had never ‘Some children would want to run far away from
attended a special school. her. Their parents also might have been saying don’t
go near her. You’ll get her infection.’ P4
4.2. Mainstream schools don’t care ‘I begged the teacher 2-3 times to keep my child
in school. We didn’t know about any separate
This theme describes the experiences that parents school. Even if our child was not learning, we
had while dealing with mainstream schools. Figure 2 wanted them to let our child at least be with the other
depicts the various sub themes under this theme. kids. She could listen. So she would have learnt to
talk. But they said, no because other parents weren’t
Mainstream
Schools Don't ok with it.’ P7
Care And yet, not a single participant had lodged a
formal complaint about the discrimination. In fact,
they believed that they deserved this sort of
treatment. During the interview, not a single
participant showed awareness of the rights of their
Lack of
Lack of empathy CWIDD.
Discrimination and knowlege of ‘Teacher told, sorry, we can’t keep your child. I
responsibility special needs
accepted. Why because, my fault is there. My
Figure 2. Theme 2 - mainstream schools don’t daughter’s fault is there.’ P10
care Despite their belief in the benefits of mainstream
education, parents had very little trust in mainstream
Despite their belief in education, parents schools and the teachers there. Parents expressed
expressed very low confidence in the schooling deep concern that schools did not provide basic care
system. for their child. Almost two thirds of those, whose
Although the average age of starting school was children presented with co-morbidities, reported that
5.15 years, more than half had also remained out of the school had proved to be a great health risk for
school for a minimum of 5 years. Those in the no their child.
school category had started school at 6.14 years and ‘The child would often come home bruised. Her
stayed at home for an average of 7.7 years whereas legs are weak. She would have been hurt badly.

Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1599

International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

When we asked the teacher, she said, “Children play took him to 2 schools each day. He was given only
and push. That’s not my responsibility.’ P5 an hour of schooling in each.’ P2
‘If I put her in a school, I’m scared that nobody Thus, although all but 4 children from the sample
will care for her there. If she falls down again, I’ll had attended a mainstream school, only 5 were
have to spend again on her health. Health is more currently going to a mainstream school.
important than education, isn’t it?’ P20
All participants believed that teachers were 4.3. Special schools understand and help
unwilling to take responsibility for their disabled
child and unreasonably expected parents to fill in. Parents were comparatively happier with their
‘Nobody takes the responsibility. Even the class experiences at special schools. A little more than half
teacher won't take that responsibility. Sometimes, he of the children who had ever been to a school had
has even been forced to stay at home for a period of attended a special school. Parents almost always
8 to 15 days. He was forced to; by the teachers. Even chose these schools after facing rejection at a
the job of explaining is handed over to me”. P1 mainstream school. This theme is depicted pictorially
“I had shadowed my son for 6 years”. P2 in Figure 3.
‘What they tell, you know? When we go for Special schools
admission – you have to be with him. You have to understand and
help
come along. Then, I can teach him at home only,
no?’ P13
They often found their child being ignored/
support is
neglected by the teacher. teachers are provided
‘He's very good at singing. But unfortunately, it's empathetic and to parents
able to adapt
been 3 years now; nobody has noticed that he's so curriculum/
good at singing. Nobody has noticed. No music instruction
teacher has noticed that there's an excellent voice he communication
is positive and
has. He is not taken in the school programs.’ P1 constructive
learning
‘I went for 10 days to check why she cried to go is
to school every day. She would get up and sit in a visible
corner, all alone. They wouldn’t care if she’s not
eaten. They wouldn’t wipe her drool. They wouldn’t Figure 3. Theme 3 - special schools understand and
pay attention to her.’ P9 help
Some parents believed that at home, their
daughter was safe from sexual exploitation. Teachers here were perceived as empathetic and
Although only a few parents explicitly mentioned able to adapt their curriculum and instruction to suit
this fact, perhaps due to cultural inhibitions, almost the needs of their child.
half of the boys were found to have never gone to a ‘In the previous school, he would cry every day to
special school, suggesting that having opportunities go to school. But here, the teacher looks after him.
for socializing was high on the list for parents of He likes the teacher a lot. He says he wants to go to
boys but not for parents of girls. her house.’ P15
“Future of the child must be good. If anything ‘They love him here. He doesn’t feel “degraded”.
happens (at school), it’ll cause problems for us isn’t P3
it - when she grows older?”P28 ‘My neighbors told me the teacher (at the special
Parents also believed that mainstream schools school) makes them do exercises to strengthen the
and its teachers lacked empathy and understanding of legs also.’ P30
special needs. Teachers often complained instead of Participants were able to notice that their child
helping the parents and could not make the child had begun to learn in these schools.
learn. ‘Now, he has started following instructions. He
‘The teacher would call me every day to school to loves participating in activities.’ P15
complain about my child.’ P8 ‘My child has become a leader and helps other
‘”He doesn’t study, only disturbs”, the teacher children follow the teacher’s instructions.’ P10
used to say.’ P3 ‘He wouldn’t wear new clothes/shoes before.
‘Both my children went to the same school. So I Now, he wears them.’ P3
would send them together. But my son would walk Special schools provided counseling to parents to
slowly because of weak legs. My daughter would get enable them to support their child.
late and be punished. She would come back crying ‘They say, “You are not alone”. “A special child
every day and hated taking him to school.’ P8 makes a family special”’. P3
‘8 schools I have changed as of now. I don't think Parents also reported that communication with
he has 8 years of learning. One particular year, I the teacher in special schools was more positive and
involved constructive feedback, not complaints.

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International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

‘Teacher says, “Send her to school. If she stays doctor wouldn’t be there. Once or twice, we fought
at home, she’ll only be used to you and she’ll trouble with them, because she gets epilepsy attacks. Then,
you. Here, she’ll be with other kids.”’ P5 we took her out. After that, we’ve been keeping her
‘Every day they would send a diary note to at home.’ P4
inform me about how much he finished and what he Many a times parents pulled their child out from
needs to complete at home.’ P8 special schools when they saw that going to school
These few positive experiences however were not was causing psychological damage to them. They
enough to keep children at special schools. More acknowledged that this could be a result of bad
than half of the children who had ever gone to a experiences at a previous school and not necessarily
special school were currently out of school. at the current school. This theme was most common
among teenagers who had dropped out of school. No
4.4. We left school because it was parent stated poverty as a reason for their child being
unsupportive out of school.
‘He would run away at the sight of the school van
More than half of the parents had changed at least and wouldn’t come home for long periods after that.’
2 schools. Parents who were currently sending their P8.
child to a school had changed at least 3 schools on ‘Some teacher had hit her. So she became very
average. About a quarter (Most from the no school scared of school. Out of that fear, she would get a
category), had dropped out after just 1 school. fever and wouldn’t eat anything for 2 days. So we
Barriers to school going behavior were analyzed thought why give her trouble by sending her to
by coding the reasons for leaving the last school. school.’ P9
Thematic map of this theme is depicted in Figure 4. Lack of transport was equally responsible for
keeping children out of schools.
‘It is a big problem to transport him. It would be
Reasons nice if we had transport for these children - for
for
Leaving study.’ P25
‘I paid a lot for transport when I had to take her
Special to physiotherapy sessions. I would not buy fruits that
schools time. Now, I want to spend on fruits instead of
Mainstream
schools transport for school.’ P20
child The following excerpt gives us a glimpse of what
lack of disinteres
t mobility means to parents and why transport was a
basic
care lack of big reason for staying out of school.
adaptation ‘She was about four and a half years old. It was
February the 9th. 8pm. Saturday. We were watching
lack of a dance on TV. Suddenly, she put her steps.
asked
to leave transport Suddenly! I was shocked!! My daughter was
walking! From night 8pm, up to 11pm, she walked.
Figure 4. Theme 4 - we left school because it was Big crowd was there, seeing her. Everyone was
unsupportive clapping. The flooring at that time was uneven. Even
then she walked. That’s the miracle for me. It is a
The most common reason cited for leaving a miracle for me. 4.5 years, I was just… keep your
mainstream school was lack of basic care. This hands here (right hip) and see. It was swelled upto
theme cut across the 3 schooling categories, here (shows size of swelling) because I used to carry
economic status and presence of comorbidities. her everywhere. No transport. Now, there is no
‘That school didn’t bother about my kid. They swelling, no? It was a miracle for me. I can say that
bothered only about the good ones.’ P31 much.’ P10
‘The teachers, they were very busy. They had no
time to take out and you know be with the special 4.5. We want a learning environment
kids for what they required to do. Lot of neglect was
happening from the teacher's side.’ P1 This theme explores the expectations that parents
The second most common reason was being have, from a schooling environment, for their child
asked to pull out the child. More than half of the and is shown in Figure 5.
parents who had ever sent their child to a school
reported being asked to pull their child out.
Lack of empathy and reasonable
accommodations were cited as other major reasons.
‘What they did is, whenever we went there, they
didn’t care for her. She would be left alone. The

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International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

them in all these: lunch time, break time, all the

Acceptance Knowlegeble activity based. Any of the art and craft activity
and
of disabled
empathetic anything for that matter, they are having him in the
child classroom’. P2
teachers
‘They have sports, dance, arts etc. He even
danced for Independence Day.’ P3
Multiple
opportunities Role models Most parents confessed that they didn’t know
to develop for parents how to teach their child sometimes and looked up to
teachers to be role models for them.
‘Whatever I know, I teach her. I observe the
Figure 5. Theme 5 – we want a learning
teachers and teach her.’ P20
environment
‘We will ask the teacher how to teach her and
Firstly, parents wanted an environment where give her practice at home.’ P5
their child was accepted and provided basic care.
‘First and foremost I ensure there is an 5. Discussion and Conclusion
acceptance for him in that environment.’ P2
‘If you’re interested, you can take her and teach The results of this study highlight that all parents,
her. But you should care like how we do at home regardless of their own education and financial
(P21) status, are acutely aware of the benefits of peer
Secondly, participants appreciated if teachers learning for their CWIDD, specifically alongside
were empathetic. non-disabled peers. This is interesting, especially
‘She (the teacher) comes home if the child hasn’t because poverty has been a big barrier to school
gone to school to ask if he’s fine.’ P24 going behavior among non-disabled children [2]. The
‘He sometimes hits other children in school. desire for inclusive education has been expressed by
Their parents complain to the teacher. But the parents in the Western world too [11, 12]. A previous
teacher covers it and teaches the students to Indian study had also found that children had been
complain to her first instead of, to their parents. The sent to mainstream schools before being shifted to
other parents come to school and scold the child but special schools, which parents considered as safe
the teacher intervenes and asks them to resolve it havens [7]. However, caution needs to be employed
with her first.’ P31 while interpreting the low opting rates of special
They wanted the teacher to recognize their schools in the current study. Cultural beliefs, low
child’s unique learning needs and make suitable awareness of special schools, better visibility of
accommodations for them to ensure their learning mainstream schools and the psychological need to
happens. This also meant that the curriculum and feel “normal”, must be ruled out before concluding
instruction had to be adapted to meet the child’s that most parents do not prefer them for the
unique learning goals. evidenced benefits of inclusive settings.
‘He goes to grade 5 classroom but does Gross negligence and discrimination by staff in
academics of grade 3. When he misbehaves, they mainstream schools was reported by many parents,
take him to the cozy corner where they have toys so irrespective of socio-economic backgrounds. Most
that he can calm down. They also make him sit on a parents had been asked to pull out their child. And all
gym ball because he’s hyperactive and that gives him parents had experienced denial of admission due to
some movement.’ P2 the child’s disability. Other Indian studies have also
‘Now, he does homework on his own. She tells found similar results [7]. Thus, it could be co-
him what to do and how, at school.’ P31 incidental that none of the parents, who were
‘He used to write the exams also in the resource currently sending their children to school, had
lab. Not in the, you know, regular class where the reported being asked to pull their child out.
other kids are writing. Because he needs to be More private schools than government schools
prompted, he needs to be reminded, that this is exam, had asked children with IDD to leave. Although the
you need to write. He was quite ok with that.’ P1 obligation placed on government schools (to ensure
Parents expressed joy at seeing their child that every child in the neighborhood, regardless of
participating in extra-curricular activities, knowing disability, is attending school) maybe restricting this
their children had multiple opportunities to develop behavior, it is not enough to explain why so many
just like other kids. More parents who had sent their children had dropped out and never returned. Yet, it
children to private schools longed for this. reveals that access to schooling maybe better for
‘He likes the school because there's horse riding CWIDD from financially under-privileged
and swimming. So, at 3.30pm, even if I say no, he backgrounds than for those from financially better-
says, “mama no class” and runs to the stables.’ P1 placed backgrounds because the former prefer
‘So, I look into a school only on the aspect of government schools and the later prefer private ones.
socializing, mingling and having him one among

Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1602

International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

This is shocking, given our common belief that alongside “normal children” would severely affect
economic power increases opportunities. the “normal” children’s education. This too, is a
Yet, no parent had raised their voice against this common sentiment among teachers, who have been
discrimination. They also did not display awareness found to be the least supportive of inclusion,
of their child’s rights. This could mean that they especially of students with moderate and severe
didn’t recognize acts of discrimination for what they disabilities [15]. This study also found that parents of
were and that’s why, blamed themselves or the children without disabilities had low acceptance of
disability of their child. An Irish survey [11] that children with disabilities.
found similar results suggests that even access to this However, attempts to train Indian teachers in
information may be difficult to obtain for parents. modern pedagogy, in order to empower and enable
Given the high possibility of widespread them to support children with special needs in
discrimination, lack of responsibility, empathy and mainstream schools, has not yielded impressive
care, it is possible that even school managements are results. In a recent study conducted to evaluate the
unaware of the child’s rights and their own effectiveness of one such teacher training program,
accountabilities. Majority of teachers have been participants reported that the program was of little
found to possess low levels of knowledge on the use to them [16]. Another study [13] recommended
needs of children with disabilities [13]. However, that instructional methodologies must be adapted to
more studies are needed to explore how much and the Indian context.
how well school managements and policy makers Much research has been done internationally on
understand the needs of children with disabilities. what constitutes good education for children with
A study by Kalita and Sarmah [4] had also disabilities and it is imperative that these core ideas
observed that drop-out rates increase steeply with are incorporated in Indian training programs too.
age, in Indian CWIDD, especially after age 8. This Ferguson [17] writes that many European countries
could explain why the average age of children such as Norway, Greece, Portugal, Spain, Estonia,
currently in school, in the present study, is pre - Lithuania, Luxembourg and Italy are now supporting
adolescent. It is possible that most teenagers had 80-90% of their disabled children in mainstream
dropped out because providing support for co- schools. A cross-continental study on training pre-
morbid complexities associated with teenage and service teachers concluded that those who directly
IDD, in addition to designing an appropriate and regularly interacted with students with
curriculum for this age group, were probably out of disabilities, understood various disabling conditions
scope for schools. and were aware of policies and legislation supporting
In the current study, girls and boys were equally inclusion, were more confident about teaching
cared for and given/denied opportunities equally. students with disabilities [18] Another study [19]
Parents were as anxious to educate their daughters as found that organizing school activities and
they were to educate their sons. Although this study implementing them in such a manner as to enable the
also noted that more girls were out of school than participation of disabled students in both physical
boys, no evidence of gender specific discrimination and social environments is the key to inclusive
by parents was found. This is a refreshingly education.
surprising result, considering that among non – It was surprising to find that lack of transport was
disabled children, more girls are out of school mainly causing many parents to pull their child out of
due to gender discrimination [2]. Previous studies on school, especially in this age and day, when transport
out of school disabled children also support this has become more accessible than ever and after
result [1]. Considering that parents of girls with IDD multiple studies have repeatedly stressed on the need
gave menstrual hygiene and sexual safety more for school transport for children with special needs.
prominence in this study, it is possible that apart Although many parents had a free pass for the
from the complexities of teenage, IDD and bad government run buses, they found that bus stops
learning histories, which are common for both boys were quite far and carrying the child till there or up
and girls with IDD, inability of schools to garner and down the bus, was quite difficult and put their
trust of parents with regards to menstrual hygiene own health at risk. Since, most of them belonged to
and sexual safety, kept girls with IDD more financially under-privileged sections of the society,
frequently out of schools. they couldn’t afford private transport.
Indian studies have documented a good number It is also possible that odds are stacked against
of parents as being unsatisfied with the teaching and some children and consequently their parents, more
learning aids being used by the teachers. When than against others, with regards to access to school
resource rooms were assessed, teachers were found and good quality education. The following maybe
not to be using learning materials that would meet contributing factors: presence of comorbidities;
the needs of students [14]. reduced societal participation of parent; type of
In one impact study [5], teacher participants had organization – private or government and lack of
expressed concern over the fact that having CWSN

Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1603

International Journal of Technology and Inclusive Education (IJTIE), Volume 9, Issue 2, 2020

exposure to training. However, more studies are read format in every classroom and the gates of a
required to validate these factors statistically. school must be made mandatory so that children’s
All of these results must be considered with some school going behavior is self-reinforced. These
caveats in mind. Firstly, income levels were just posters must also include contact details of a go-to
estimates based on observation of size of the house, person that parents can approach to seek help in case
number of resident family members, number of of violation of rules.
private services opted for, approximate amount spent Policy makers must work at increasing the
on services and mention of financial difficulties. visibility of CWIDD. When the visibility of CWIDD
Secondly, the cities where the participants resided increases, the general population will have more
are two of the most developed cities of India and opportunities to interact with them and thus, be
have the lowest school drop-out rates. They are also confident and responsible for including them in the
culturally quite different from the rest of the country. society.
In addition, parents gave only estimates of ages at In the words of Diane Ferguson [17], “The good
which their child joined or left a school, and the news is that we already know most of what we need
number of schools which had denied their child to know to transform schools into inclusive systems.
admission on the grounds of disability. What remains is to do the task”.
Despite these limitations, it is evident that parents
want their CWIDD to be educated and prefer 6. Acknowledgement
mainstream schools to special schools. Lack of
supportive and conducive care cum-learning The author wishes to acknowledge the significant
environments at schools, for both CWIDD and their contribution of her dissertation supervisor Michelle
parents, are keeping Indian CWIDD out of schools. McCarthy, as well as Mr Ganesh and his colleague
Most vulnerable are teenage girls who lose interest in Mrs. Sara from the NIEPID, Hyderabad, India.
education due to unsupportive teacher characteristics Special thanks to all the mediators and participants.
as well as negative, discouraging, past learning
experiences but also face the risk of sexual 7. References
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Copyright © 2020, Infonomics Society | DOI: 10.20533/ijtie.2047.0533.2020.0196 1605