This research study aims to throw light on the educational status of children with disabilities and the various barriers they and their families face within school or in the process to get into the school. One Hundred and Fifty (150) children and their families were studied in the states of Delhi, Odisha and Uttar Pradesh. Though the participants of the study cannot be representative of the whole Indian population, the results of the study can certainly be seen as indicators of the scenario of the right to education of children with disabilities in India.
An AARTH-ASTHA Publication
Study conducted by AARTH-ASTHA, New Delhi in collaboration with AAINA, Bhubaneshwar, Odisha and SPARC-INDIA, Lucknow, Uttar Pradesh
First Published in December, 2013. New Delhi – 19, India
A Research Study by AARTH-ASTHA In Collaboration with AAINA and SPARC-INDIA Supported by UNICEF
Prepared by Radhika M. Alkazi & Nabajit Malakar Cover Pages by Nabajit Malakar
Acknowledgement
Completion of this research study was possible with the work and support of several people. We would like to express our deepest appreciation and sincere gratitude to all of them. This report could not have been possible without the support and cooperation of the families of the children with disabilities who were interviewed. Therefore, we dedicate this report to them.
The field workers who interviewed the families and the children did the most crucial work given the length of the schedules. We thank the interviewers, researchers, data entry personnel and the directors for their work. They are -
AARTH-ASTHA Team – Radhika M. Alkazi, Nabajit Malakar, Rajasree Vrindavan, Binod Bharti, Krishna Bansal, Anuradha Jasrotia, Meera Nagar, Niranjana, Kiran Kumari, Kajol Bhati, Dazy Chaudhary, Rinku Devi, Seema Gurung, Rukshar and Bharti Sale.
AAINA Team – Sneha Mishra, Pradyumna Kumar Rath, Dillip Biswal, Santap Kumar Panda, Abhisekh Brhma, Swaha Das, Basant Kumar Pattanaik, Sujata Mohapatra, Anil kumar Pattanaik, Kishore Pradhan and Minati Panda.
SPARC Rural Team - Amitabh Mehrotra, Shraddha Singh, Manoj k Singh, Brijesh, Bhola Ram, Shivpati , Sarita, Arun, Devesh, Lal Shahab Singh, Ranjana Mishra, Shyama Singh, Nirmal, Abhishek, Sooraj, Sandeep, Shyam Babu Pandey and Ashish Yadav
We would also like to thank Ms. Poonam Natarajan (Chairperson, The National Trust), Ms. Anupam Ahuja (Associate Professor, NCERT) and Sri Ambarish Rai (Convener, RTE Forum) for their advice, guidance and support to this study.
Dedicated to all children with disabilities & their families...
Contents
Executive Summary...... 1
Introduction ...... 4
Chapter I: National Data For Planning ...... 13
Chapter II: About The Families ...... 23
Chapter III: Children Who Are Attending Schools ...... 28
Chapter IV: Children Who Have Dropped-Out Of School ...... 55
Chapter V: Home-based Education? ...... 64
Chapter VI: Children Who Have Never Set Foot in School ...... 68
Chapter VII: The Way Forward ...... 75
References ...... 82
THIRD ANNUAL REPORT ON STATUS OF CHILDREN WITH DISABILITIES UNDER THE RIGHT TO EDUCATION ACT 2012-13
Executive Summary
The Right of children with disabilities to Free and Compulsory Education has been strengthened at the policy level over the years. In 1995, the Persons with Disabilities Act mandated free education in appropriate environments for all children with disabilities till the age of eighteen. The Sarva Siksha Abhiyan has had a separate Inclusive Education component that focuses on children with disabilities. In 2008, India ratified the UN Convention on the Rights of Persons with Disabilities. Article 24 of this Convention focuses on Education. The Convention mandates that States “ensure an inclusive education system at all levels and lifelong learning” for children and persons with disabilities.
In 2009 India enacted the Right of Children to Free and Compulsory Education Act. The Act gives to children between the age group of 6-14, the right of free and compulsory education with special mention of children with disabilities. The first amendment of the Act further categorised children with disabilities among the children of disadvantaged groups entitling them to certain other rights. Children with severe and multiple disabilities were further entitled to ‘Home-based Education’ through the same amendment.
AARTH-ASTHA, being an organization active in the education sector and as a member of the National RTE Forum had resolved to keep a watch on the implementation of the right to education of children with disabilities and publish an annual stock-taking report.
The “Third Annual Report on Stocktaking of Status of Education of Children with Disabilities under the RTE Act 2009” is a joint effort of three organizations from three distinct geographical areas – AARTH-ASTHA from Delhi, AAINA from Odisha and SPARC- INDIA from Uttar Pradesh. This collaboration resulted in an in-depth study and analysis of the status of the right to education of 150 children with disabilities belonging to disadvantaged communities, 50 from each state, from the perspective of their families.
Children with disabilities constitute one of the biggest groups of drop-out and out of school children. The RTE Act has, no doubt given many families the strength to approach the neighbourhood school for the admission of their children. While the school are not able to deny admission now, they often point out at the lack of infrastructure and facilities to accommodate children with disabilities. Some parents struggle, some get disheartened and loose hope, while some other parents still never gather the courage to get their child outside the house due to various environmental barriers, accessibility issues or at times due to pure pessimism. On the contrary, there are examples of many good practices where parents are proactive or the school takes the initiative of making necessary changes to accommodate the child. The report looks at all these dimensions and points out where the problems locate and gives recommendations on how to overcome these problems.
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The report is based on empirical evidence from families of children with disabilities and attempts to look at how accessible the country’s education system is to children with disabilities. It looks at the various groups of children with disabilities in regard to their educational status by categorizing them in the following groups – i) Children who are going to schools; ii) Children who have dropped out of schools; iii) Children who have never set foot in schools; and iv) Children who have been enrolled under home-based education.
As we attempt to take stock at the end of the third year of the implementation of the RTE Act, we find that the inclusion of children with disabilities in the government school system cannot be cast in a strong upward graph. A look at the official data available for planning, the DISE shows that the enrolment of children with disabilities in relation to all children continues to be less than one percent over the span of a decade.
In all three states we find that the administrative procedures seem to be increasingly following the letter of the law. The majority of families did not have to submit documents for admission, children were not screened, families were not interviewed, no fees were demanded from families at the time of admission, books and money for uniforms was provided universally to all children studying in government schools. However, at the same time, the system is still not accepting the children with disabilities. The ‘push out’ factors are overwhelmingly in the attitudes of school authorities. School authorities often try to stall the admission of a child with disabilities by giving different reasons why the child will not be able to participate.
Despite the entitlement, basic necessities for children with disabilities to access schools like transport are not provided to children in Uttar Pradesh or Delhi. In Odisha out of the 40 school going children, 10 were given escort allowance. Families of children receiving the allowance are encouraged to send their children to school. On the other hand, families of children who require support to go to school have to make a huge effort. Such children are in danger of dropping out.
Children with disabilities were seen facing challenges posed by inaccessibility of facilities within schools such as toilets, drinking water facilities and mid-day meals. Most parents pointed out the lack of systems within schools of ensuring assistance and reasonable accommodation, resulting in ad-hoc strategies. The practice of parents coming to school to feed their children or take them to use the toilet needs to be replaced by provisioning for personal assistance. Many parents expressed their worries about the safety and security of their children within school in the absence of helper staff and security at school gates. Due to lack of attention, children with disabilities were seen roaming around while their classmates attended the classes, showing us that going to school do not mean learning well. The underlying assumption of the ‘inability’ of the child with disability is very strong among school authorities.
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The lack of specialist teachers and the lack of convergence of habilitation and rehabilitation facilities and personnel with the education system are adding to the feeling amongst schools that they do not know how to teach the child with disabilities.
It was observed that many children with disabilities drop-out from school due to reasons ranging from lack of reasonable accommodation within schools, lack of transportation facilities, lack of proper guidance from teachers, denial to take responsibility of the child and lack of care and attention by school authorities. The disabilities of some children were seen progressing to a more severe state, making them unable to continue schooling. Here, the schools were not seen making necessary arrangements for the education of these children. Parents have felt that the teachers, support staff and the school authorities are not aware about disabilities and sensitive towards the needs of children with disabilities. All these factors also have created parental disinterest or lack of interest in children towards going to school, which may be a seen as a reason for dropping out.
Parents of children in Odisha who are under the home-based education program expressed their worries while admitting that the teacher have never showed up. They said that they would prefer regular schooling.
Some children never went to school because of denial of admission on the basis of disability. Some others were given admission on conditions that someone from the family would have to sit with the child in school, through the school day and take responsibility for the child.
Parents of most of the children who have dropped out and the children who have never been to school expressed their desire to send their children to school but at the same time they spoke of their poverty, lack of facilities and inadequate care in schools that restricts their children from going to schools.
Beyond the obvious patterns of discrimination that the school system deals out to the child and family, there are deeper reasons that all families without exception talked about. These are to do with the education system, how it is structured and ordered and implemented in our country. How within the prevailing paradigm of education it is difficult to see how children with high support needs are to be educated.
The report tries to relate the issues from the grass-root level to policy concerns. It questions the relevance of the available statistics. It points out discrepancies and above all, advocates for change. The small number of participants in the study may not allow it to be representative of the entire nation but it certainly points out at trends that call for the attention of policy makers, organizations, educationists and activists.
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Introduction
The Right of children with disabilities to Free and Compulsory Education has been strengthened at the policy level over the years.
In 1995 the Persons with Disabilities Act underlined the right of children with disabilities to free education in an ‘appropriate’ environment.
The Sarva Siksha Abhiyan has been a flagship program of the government of India. It has had a separate ‘Inclusive Education’ component that focuses on children with disabilities. While it has followed a zero rejection policy for all children, it has also followed a ‘basket of options’ approach where children with disabilities could be placed in a range of educational settings including resource centres and even the ‘home’
In 2008, India ratified the UN Convention on the Rights of Persons with Disabilities. Article 24 of this Convention focuses on education. The Convention mandates the State to “ensure an inclusive education system at all levels and lifelong learning’ for children and persons with disabilities.
State parties must ensure that
2 (a) Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education or from secondary education on the basis of disability.
In 2009, India enacted the Right of Children to Free and Compulsory Education Act. Through this Act India has attempted to formalize education, create standards in education, and create a vision of quality education. Most importantly, the RTE ACT recognizes that discrimination exists in education and attempts to eliminate it.
It has a commitment to ensure that all its children are in school. This includes all children with disabilities.
The RTE Act 2009 and Children with Disabilities
While the RTE Act 2009 is for all children, it has made specific mention of children with disabilities. With the international and national focus on inclusion, it has attempted to make an uneasy tryst with inclusion. So while on the one hand all children with disabilities
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are part of the Act, it also invokes the Persons with Disabilities Act 1995 when it mandates that –
“Provided that a child is suffering from disability, as defined in cause (i) of section 2 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1996, shall have the right to pursue free and compulsory elementary education in accordance with the provisions of Chapter V of the said Act.”
Along with this clause, the inclusion of children with disabilities was one of the focal points of the first set of amendments made to the Act in 2012. Children with disabilities became a named category amongst the ‘disadvantaged groups’ in the Act. In the same amendment, children with severe and multiple disabilities were offered the choice of ‘home based education’’ as part of their right to free and compulsory education.
Stocktaking on the Right to Education of Children with Disabilities
The enactment of the Fundamental Right to Education of children between the ages of 6 to 14 in the form of the RTE Act has spurred nationwide concern and interest. All over the country, civil society groups have got together to discuss and monitor the implementation of this very important right. The Right to Education Forum an umbrella body of civil society organizations and educationists has been conducting a stocktaking exercise every year in the beginning of April since when the Act came into force in 2010.
As a member of the national and Delhi forum, AARTH-ASTHA has been working to report on the status of children with disabilities in education after the enactment of the RTE.
First Report (2011)
The first report was written at the time of the notification of the Model Rules of the Act. The model rules had been written and different states were finalizing their own rules to the Act. In our first report we studied the model rules and the draft rules of states of Odisha, Karnataka, Kerala, Haryana, and West Bengal. We looked at the implications of the Rules for the education and inclusion of children with disabilities and the strength of the commitments that different states were making to the child with disabilities.
Second Report (2012)
The Second Annual Report on the Status of Children with Disabilities under the Right to Education Act was written in the backdrop of the controversial amendments of the Act.
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An attempt was made through the report to advocate against the amendment of providing home based education as a choice to children with severe and multiple disabilities.
The report also looked closely at official data on the inclusion of children with disabilities and underlined the need to look closely at the low rates of enrolment and gender parity index of children with disabilities in school. It also drew the reader’s attention to changing patterns in the enrolment of children with disabilities and brought forth some of their voices.
The Third Report (2013)
The Third Annual Report on Stocktaking of the Right to Free and Compulsory Education of Children with Disabilities under the Right to Education Act 2009, attempts to put forth the perspective of one hundred and fifty families from Odisha, Delhi and Uttar Pradesh. Children with disabilities and their families are the primary stakeholders in the process of education. In our third stocktaking report, we felt it was imperative that we hear their voices.
In this process we were joined by two other civil society organizations, AAINA from Odisha, SPARC India from Uttar Pradesh.
About the Organizations
AARTH-ASTHA
AARTH-ASTHA is a registered non-profit organization founded in 1993. We work in urban resettlement colonies, conduct research, provide information and link action with policy concerns. We believe that each and every person in society however severely disabled, has the right to equal opportunity in every institution of society and has the right to develop their full potential.
In this, we prioritise children and people with disabilities belonging to the poorest and most vulnerable sections of society.
AAINA
AAINA was founded in 1998. AAINA, which literally means ‘mirror’, is a voluntary organization based in Odisha, India. The organization was conceived as an effort of a few socially sensitive people who came from various backgrounds, charged with the vision of working with vulnerable sections of the society and addressing issues giving rise to such
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vulnerabilities. In this context, persons with disabilities, children and women became the core focus areas of the organization. AAINA has been working extensively in the state covering rural and tribal population at one end and professionals, administrative agencies, government officials and legislators at the other end. Disability has been the major focus right from its inception.
SPARC-INDIA
SPARC-INDIA is a society formed in 1995 and registered in July 1996 as a voluntary organization with the Registrar Societies, Firms and Chitfunds, U.P., Lucknow, under Society’s Registration Act, 1860. It is an outcome of the collaborative effort of Mr. Amitabh Mehrotra, the Founder Chairperson & Director and few other like minded persons.
In its existence for more than fifteen years, SPARC - India has been able to contribute to the cause of disability in the rural, as well as, urban areas. Its objectives are to –
Organize and educate persons with disabilities about their rights. Provide education to the children with cerebral palsy (C.P.). Provide therapeutic care to the children with disabilities and counselling, training and guidance to their parents. Restore the confidence of persons with disabilities for any challenges related to vocations/ jobs. Ensure that persons with disabilities are better represented and have a greater voice in village/block/district/state at national levels and government decision- making bodies.
About the Study
The study, partly supported by UNICEF is based on the information collected from One Hundred and Fifty (150) children with disabilities and their families. Each organization studied 50 children and their families. The selection of the children was purposive and convenience sampling was employed for the selection.
Rationale and Aim of the Study
Children with disabilities are one of the most vulnerable groups of children, having historically been subjected to multiple layers of discrimination when it comes to education. The basis of such discrimination has not only been physical or environmental but largely
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attitudinal. They have been categorized under disadvantaged section of children under the Right to Education Act, with the outset of which, the barriers these children face in education were anticipated to be minimised. Through this research study, AARTH-ASTHA and the collaborative organizations seek to find the various developments and areas of concern in the education of children with disabilities.
The rationale behind carrying out this study lies in the importance of inspecting how the three (3) years of implementation of the Right to Education Act has influenced the lives of children with disabilities and the aim was to take stock of the implementation of the Right to Education Act with focus on the changes that the legislation has been able to bring about in the lives of children with disabilities. The study examines areas where the Act has not been able to bring about positive changes and dives deep to explore and understand the nature of problems and issues that children with disabilities still face while they avail or attempt to avail education.
To understand the commonality of current problems and issues that children with disabilities face through-out the country, the need of periodically checking the status of children with disabilities in a wider platform representing varied geographical areas is imperative. The wider platform was achieved with the selection of the three (3) states in the northern and eastern zone of the country namely - Delhi, Odisha and Uttar Pradesh representing three distinct geographical areas. These states were an ideal selection as they gave the study an ideal mix of rural and urban population. The participants from Delhi were fully urban, in Uttar Pradesh half were urban and the other half rural, while in Odisha, they were fully rural. The states have distinct cultural backgrounds and economic realities. While Delhi showcased migrant population from various geographical areas, Odisha gives us access to people in tribal and coastal zones.
The said states were selected also due to the logistic convenience of having familiar organizations in place with earlier experience of accomplishing collaborative projects. Being a small pilot study of a limited duration of only four (4) months, opting for logistic convenience was essential and the logical decision.
Research gives us the knowledge we require to strengthen the services we provide to children with disabilities in their communities, helps us to disseminate information and develop strategies and work towards the issues of present concerns with children with disabilities. The organizations involved in the study are committed to back the results of the study with actions in the field and advocacy in the policy level.
Nature of the Study
Some points that would show us the nature of the study are –
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THIRD ANNUAL REPORT ON STATUS OF CHILDREN WITH DISABILITIES UNDER THE RIGHT TO EDUCATION ACT 2012-13
a) All of the 150 children have disabilities. b) The educational status of the children are either - School Going(those who are going to school), Drop Out(those who had stopped going to school, Out of School (children who have never set foot in the school) and Home based (those children who are being taught at home (or at least included or enrolled into such home-based learning program) c) All the children and their families that were studied were from the control groups of the organizations that conducted the study. AARTH-ASTHA in Delhi, AAINA in Odisha and SPARC India in Uttar Pradesh have been working in particular areas in their respective states for years. The children and their families belong to the areas where these organizations are providing their services and are known to them
Age of the Children
AGE DELHI ODISHA UTTAR PRADESH TOTAL
6-8 Years 25 5 18 48 (32%)
9-11 Years 6 20 7 33 (22%)
12-14 Years 14 25 22 61 (40.66%)
15-18 Years 4 0 3 7 (4.66%)
No Information Provided 1 0 0 1 (0.66%)
TOTAL 50 50 50 150
Table.Intr-1
Gender Division of the Sample
STATES GENDER TOTAL MALE TOTAL FEMALE
Delhi Male 22 22 28
Female 28
Odisha Male 30 30 20
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THIRD ANNUAL REPORT ON STATUS OF CHILDREN WITH DISABILITIES UNDER THE RIGHT TO EDUCATION ACT 2012-13
Female 20
Uttar Pradesh Male 28 28 22
Female 22
Table.Intr-2 Total 80 (53.33%) 70(46.66%)
Tools of Data Collection
Detailed questionnaires were developed by AARTH-ASTHA and discussed with partners. The questions were framed with the understanding that the realization of the Right to Education is an outcome of the realization of many other rights. A child’s participation in education is affected by many factors, including factors relating to the situation of the family, the community, the health status of the child, issues of safety and security and much else.
To collect different sets of information from the children with different educational status, separate schedules were designed and tested in the field before making them operational in the study.
A common set of questions were designed for all children to collect the most basic information about the children and their families. This Schedule was named – ‘Basic’. The schedule consisted of questions regarding the background of the family, information about the disability of the child, about health and accessibility to health care facilities, communications, activities of daily living, movement or mobility of the child, aids and appliances, the child’s access to entitlements, rehabilitation, peer interaction and inclusion in Community life. Safety issues and the grievance redress mechanism in the community were also part of the questionnaire giving us a holistic picture of the child within their family and community.
To collect information related to school from children who are going to school, a schedule called ‘School Going’ was designed. This schedule enquired about – issues related to enrolment, attendance, transportation, accessibility of facilities within school, educational entitlements, mid day meal, participation in school life, learning experience, relationship with peers, relationship with teachers and the school authorities, safety within school, discrimination within school and grievance redress.
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A combined schedule was designed to collect information from the children who have dropped out of school and children who are enrolled under home-based education. In Odisha, the only state among the three that has a home-based education program, we saw that some children with disabilities who have dropped out of school are automatically enrolled under home based.
The ‘drop-out’ section of the schedule explored the reasons for dropping-out, whether siblings of the child dropped-out as well, how the child spends the day at home, whether parents feel the need of sending the child back to school, and if any authorities have approached them regarding re-enrolment of the child. In the home-based section of the schedule, questions were asked to enquire about whether parents are aware about what home-based education is, the enrolment procedure, whether home-based education was opted by the parents of the child, how often the teacher comes to teach. Some questions were also asked to enquire about the quality of teaching and how well the child is learning and educational entitlements. It also took the parents opinion on whether they would prefer regular schooling,
The schedule designed for the ‘Out of School’ children was called ‘Non-Enrolled’, which explored both family and school related reasons for not being able to go to school. It tried to understand how the child spends the whole day at home and whether the family spends some time with the child. It enquired whether parents would like their children to go to school and asked whether anyone from the school has ever approached them for the enrolment of the child.
As mentioned earlier, the families interviewed are known to the organizations. They are families whom we have worked with and with many there are long associations. As a result of this and the small sample size, this is not a report that claims to represent the whole of India. Instead, its strength is in the detailed understanding we have gathered about the families, the children and their lives. The strength of this report comes from the fact it brings forth the voices of parents and children with disabilities.
Through the testimonies of one hundred and fifty (150) families we hope a look into the details, the nuts and bolts of inclusion in the educational sphere. We hope to point to trends that will need further investigation and in-depth understanding.
Inclusion is a process and it is important for disability activists, educationists and policy makers to be able to see different parts of the whole together, rather than focus on few in isolation. We put forth the stories of many children, the hopes, fears and suggestions their parents make for the school system to become so that their child’s right to education can be realized.
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Limitations of the Study
The most obvious and noteworthy limitation of this study is its small size of sample. The study as described before is based on in-depth interviews with families of children with disabilities focussing on detailed qualitative information. One Hundred and Fifty (150) children with disabilities and their families participated in the study, Fifty (50) from each of the three (3) states of Delhi, Odisha and Uttar Pradesh. The study brought out what was expected from it i.e. finding the current trends of discrimination against children with disabilities in relation to education. Our field experience and secondary research shows that the situation in other states is not much different from what we saw in Delhi, Uttar Pradesh and Odisha but at the same time, we acknowledge that the small number of participants in our study would not allow it to be representation of any state or the nation.
The researchers had intended it to be a cross-disability study. A number of impairments - some common and some lesser known, have been covered in the study including locomotor impairments, intellectual impairment, multiple impairments, cerebral palsy, visual impairment and hearing impairment. However, some disabilities like – Autism and Mental Illness could not be covered in the study as children with these disabilities were not found in the concerned areas of study. Mental health disorders are an area that requires to be studied with deep analysis to determine the mental health aspects of the participation of children with disabilities in the education system. This is an extremely important area that now needs to be investigated.
It is also mentionable that this study looks at the educational situation of children with disabilities after implementation of the Right to Education Act from the families’ point of view. Whenever it talks about the children with disabilities discriminated in school, children with disabilities not being provided the necessary facilities in school, denial of admission, the school not reaching out to children with disabilities etc, the findings are purely based on information provided by the family member of the children with disabilities, the children themselves or on the basis of secondary research and not from the school authorities or any other party.
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THIRD ANNUAL REPORT ON STATUS OF CHILDREN WITH DISABILITIES UNDER THE RIGHT TO EDUCATION ACT 2012-13
C H A P T E R I
National Data for Planning
One of the important elements of the provision of free and compulsory education under the RTE Act is the obligation of the State to “ensure compulsory admission, attendance and completion of elementary education by every child of the age of six to fourteen years” (sec 8,(a).
With the amendment of 2012, children with disabilities became a named category under the children belonging to the ‘disadvantaged groups’. This has further strengthened their right to free and compulsory education.
They have also become a specific category of children along with other marginalized groups, whose right to education must be monitored by the government.
Total Enrollment of Children with disabilities as per DISE Data 1,800,000 1,600,000 1,554,353 1,402,817 1,400,000 1,384,116 1,200,000
1,000,000 831,497 800,000 Total Enrollment 600,000 of Children with 502376 400,000 disabilities
200,000 0
2007-2008 2008-2009 2009-2010 2010-2011 2011-2012
Source –DISE( Analytical tables Graph I-1
MR. PRADYUMNA KUMAR RATH, FROM AAINA, ODISHA REFLECTS ON THE DISE DATA - "THERE IS A DRASTIC DROP IN ENROLLMENT FROM YEAR 2009 TO 2010. THIS DROP IS SO SHARP THAT THERE IS AN IMPRESSION OF ARTIFICIALITY ABOUT THE DATA OF 2009.”
According to the analytical report on elementary education published by DISE in 2008-9 “the data on disabled children in elementary classes collected under the DISE reveals that
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their number varies from year to year. In the year 2004-5, there were 1.40 million such children as against 1.62 million in 2005-6. However, their number has always remained about one percent of the total enrolment in the elementary classes.”
However, as we attempt to take stock at the end of the third year of the implementation of the RTE Act, we find that the inclusion of children with disabilities in the government school system cannot be cast in a strong upward graph. A look at the official data available for planning, the DISE, shows that the enrollment of children with disabilities in relation to all children continues to be less than one percent over a span of a decade.
Falling Numbers
THE ENROLLMENT OF CHILDREN WITH DISABILITIES IN RELATION TO ALL CHILDREN CONTINUES TO BE LESS THAN ONE PERCENT OVER A SPAN OF A DECADE (2004-5 to 2011-12)
If we look at the DISE data that gives us the numbers of children with disabilities enrolled in the schools within the last five (5) years, we see that the numbers have fallen drastically. It shows us that the enrolment of children with disabilities has fallen from 1554353 in 2007-08 to 1384166 in 2008-09, giving us a difference of 1,70,237 children. The question here is - have these 1, 70,237 children with disabilities dropped- out? If they have, this is matter of concern and calls for action.
Going on to 2009-10, we see a marginal increase of 18, 701 as compared to 2008-09. But the post enactment years of the RTE Act shows that the enrolment of children is falling dramatically as we can see in the graph below. Enrolment in 2010-11 fell from 1, 402, 817 in 2009-10 to 502376 showing a difference of 900441. Though 32, 9127 was added to the 2010-11 figures by 2011-12, it was only a marginal increase. In a country like India, the increases shown in the DISE data does not hold ground. Largely, we have seen that the numbers of enrolled children with disabilities have fallen dramatically from 2007-08 onward, which have emerged as an area of concern in the disability and education sector.
Put in another way, what the statistics are showing us is that their number has been less than one percent of the total enrolment of children in schools over a span of ten years. In the recent years, it has fallen dramatically.
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Graph I-1 THIRD ANNUAL REPORT ON STATUS OF CHILDREN WITH DISABILITIES UNDER THE RIGHT TO EDUCATION ACT 2012-13
Children With Disabilities Enrolled CHILDREN In Relation To Total Enrollment WITH
Of Children DISABILITIES YEARS ENROLLED IN 0.84% RELATION TO 0.74% 0.75% TOTAL ENROLLMENT
0.42% 2007-2008 0.84%
0.26% 2008-2009 0.74%
2009-2010 0.75%
2010-2011 0.26%
2011-2012 0.42%
Table I-1 *Source – DISE Analytical tables Graph I-2
The fact that enrolment of children with disabilities has remained below one percent and that recent drops after the RTE are rather dramatic should be a point of discussion and concern for disability activists and educationists.
Numbers from Sarva Shiksha Abhiyaan
We add to this another set of statistics that were published by Sarva Shiksha Abhiyan (SSA) and presented by the MHRD to the Working Group on Empowerment of Persons With Disabilities for the formulation of the 12th Plan (2012-17).
According to the SSA data, the enrolment of children with disabilities shows a very marginal increase over the years. In a country like India, an annual increase of around one lakh children with disabilities in the education system over a period of time should alert us to the fact that children with disabilities have not become a priority in our policies and programs.
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Enrollment of CWSN - SSA Data 3000000
2500000 2595673 2632284 2442098 2000000 2215326 1997777 1500000 1560539 Series1 1424310 1000000
500000
0 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 Graph I-3
Firstly, it is important to point out that both sets of data are at variance with each other. Both are official data. Which one do we use for planning?
Secondly, neither set of data reflect a great commitment to the inclusion of children with disabilities within the educational system. This needs to be enquired into in greater depth.
Some reasons for this could be -
That there has not been a major push towards the enrolment of all children with disabilities and the resources, economic, technical, infrastructure and human resources have been too meagre to support a strong upward curve in enrolment.
Inclusion requires systemic change and although inclusion has been an agenda for the education system for some time, the required changes are not taking place leaving many out of school.
The question now also is whether being a named category in the ‘disadvantaged groups’ of the RTE Act and the attendant attention it should bring, will result in change in this picture?
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Changing Patterns of Enrolment amongst Children with Disabilities
Alongside the fluctuating and more recently downward curve that we see in the enrolment of children with disabilities in elementary education, there is also a clear change of pattern amongst impairment groups over a period of ten years. This is reflected very clearly in our DISE data over a period of time.
A Downward Trend in the Enrolment of Children with Visual Impairment and Physical Impairment
Traditionally in the country, children with visual impairment and physical impairment occupied a larger space than others in the school system.
According to the “Elementary Education in India: Analytical Report” published in 2008-09,
“Almost one in every three disabled students in elementary classes in 2008-9 is found to have some problem in moving (26.96%). About twenty Six percent (26%) of them are visually challenged, nine percent (9%) hard of hearing, eleven percent (11%) disabled in speech, about seventeen percent (17%) students mentally challenged and 9 percent (9%) have other types of disabilities” (see page 124)
However, there is a dramatic change in the percentage of enrolment of these two groups over the years as we can see from the charts below.
In Seeing
YEARS PERCENTAGE OF Percentage of students with Visual STUDENTS WITH disability enrolled in relation to VISUAL DISABILITY total students with disabilities ENROLLED IN RELATION TO TOTAL STUDENTS 25.82% WITH DISABILITIES 23.19% 20.36% 2007-2008 25.82%
2008-2009 20.36% 9.59% 7.32% 2009-2010 23.19%
2010-2011 7.32%
2011-2012 9.59%
Table I-2 Graph I- 4 Source – DISE Analytical tables
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In Movement
YEARS PERCENTAGE OF Percentage of students with STUDENTS WITH Movement Disabilities enrolled in MOVEMENT relation to total students with DISABILITIES disabilities 27.80% ENROLLED IN RELATION 26.96% 26.32% TO TOTAL STUDENTS WITH DISABILITIES
26.96% 2007-2008 12.87% 10.95% 2008-2009 27.80%
2009-2010 26.32%
2010-2011 12.87%
2011-2012 10.95%
Table I-3 Graph I- 5 Source – DISE Analytical tables
Hearing
YEARS PERCENTAGE OF Within a span of five years, we see STUDENTS WITH HEARING IMPAIRMENT amongst children with disability, there ENROLLED IN RELATION is a clear increase in the numbers of TO TOTAL STUDENTS children with hearing impairment joining WITH DISABILITIES the education system from the years 2010-11 and 2011-12. This increase is 2007-2008 9.36% dramatic to say the least. The 2008-2009 9.97% percentage of children with intellectual disability also seems to be rising at 2009-2010 9.74% steady rate over the years.
2010-2011 24.98%
2011-2012 29.36%
Table I-4
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Percentage of students with Hearing Impairment enrolled in relation to total students with disabilities 29.36%
24.98%
9.36% 9.97% 9.74%
2007-2008 2008-2009 2009-2010 2010-2011 2011-2012
Graph I- 6 Source – DISE Analytical tables
Mental Source – DISE Analytical tables YEARS PERCENTAGE OF Percentage of students with STUDENTS WITH Intellectual disability enrolled in INTELLECTUAL relation to total students with DISABILITY ENROLLED disabilities IN RELATION TO TOTAL 25.33% STUDENTS WITH 22.97% DISABILITIES 19.32% 19.85% 16.96% 2007-2008 16.96%
2008-2009 19.32%
2009-2010 19.85%
2010-2011 22.97%
2011-2012 25.33%
Table I-5 Graph 1- 7 Source – DISE Analytical tables
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In Speech
YEARS PERCENTAGE OF Percentage of students With Speech STUDENTS WITH SPEECH Impairment enrolled in relation to IMPAIRMENT ENROLLED total students with disabilities IN RELATION TO TOTAL 12.87% STUDENTS WITH DISABILITIES 12.44% 12.40% 12.16% 2007-2008 11.40% 11.40% 2008-2009 12.44%
2009-2010 12.40%
2010-2011 12.87%
2011-2012 12.16%
Table I-6 Graph I-8 Source – DISE Analytical tables
Other Disabilities
YEARS PERCENTAGE OF Percentage of students with Other STUDENTS WITH OTHER disabilities enrolled in relation to DISABILITIES total students with disabilities ENROLLED IN RELATION 18.99% TO TOTAL STUDENTS WITH DISABILITIES 11.07% 2007-2008 9.46% 9.46% 10.11% 8.50% 2008-2009 10.11%
2009-2010 8.50%
2010-2011 18.99%
2011-2012 11.07%
Table I-7 Graph I-9 Source – DISE Analytical Tables
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Using Data for Planning?
The data on the participation of children with disabilities has always been confusing and incomplete to say the least. It continues to be so even after commitments made under the RTE Act.
The fact that the numbers of children with disabilities entering the education system has remained at a consistent low needs to be investigated further at a national level. The dramatically changing patterns in the enrolment of children with different disabilities also need serious attention.
Such dramatic changes should also create urgency amongst policy makers and activists to start reporting and monitoring the number of categories of children with disabilities who find no place in our data radar.
Students Missing in our Data Radar
While the DISE has been reporting on disability for many years, it only reports on some categories. These are Seeing, Hearing, Speech, Moving, Mental, and Others.
Of these the speech impairment is not a recognized category of disability under the law. Meanwhile, it misses out on important categories such Autism, Cerebral Palsy, Multiple Disability, Mental Illness, Leprosy Cured… all categories recognized under disability specific laws such as the Persons With Disabilities Act 1995 and the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities, 1999.
On the other hand, the Sarva Shiksha Abhiyan does not report on the educational status categorically on the various forms of disability which leaves no way to understand the educational development of the individual categories of disabilities or to compare the data to the data published by DISE. SSA reports on identification of children with disabilities; their enrolment in schools, EGS/AIE Centres, Home Based Education; Involvement of NGOs; teachers training; availability of Resource Teachers; Aids and appliances; and Barrier Free Access – a set of variables that totally differs from DISE with the exception of enrolment related data.
We have already seen from the analysis above how enrolment related figures provided by DISE and SSA present significant differences. This may, nonetheless, be due to the differences in the areas of study or the kind of schools taken in their survey. However, lack of parity between the data published by two institutions on the same topic have created confusions among civil society, disability sector and educationists alike and will certainly create confusions if used for planning by the government.
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One of the important functions of State governments and local authorities under the RTE Act is undertaking “school mapping and identifying all children, including children in remote areas, children with disabilities, children belonging to disadvantaged groups, children belonging to weaker sections….”( model rule 5.2)
It is also the duty of the local authority to “ maintain records of children up to the age of fourteen years residing within its jurisdiction, in such a manner as may be prescribed”( sec 9,d)
The 2012 amendment of the RTE Act promises ‘home based education’ to children with severe and multiple disabilities under the National Trust For the Welfare of Persons With Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. And yet, neither the SSA nor the DISE officially report on the participation of children with cerebral palsy, autism and multiple disabilities.
With neither SSA nor DISE reporting on many categories of children with disabilities, it is going to be extremely difficult for the State or the local authority to understand how to identify and report on the child.
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C H A P T E R II
About the Families
In this report, we will write about people from various social, cultural and economic backgrounds. Being a study that is aimed to gather an in-depth understanding of the lives of children with disabilities and their families, we look at how disability can be all encompassing cutting through one’s socio-cultural and socio-economic boundaries in three distinct geographical areas with their own peculiarities.
The study was conducted in the three states of Delhi, Odisha and Uttar Pradesh. In Delhi, the study was conducted among a fully urban population. In Uttar Pradesh, a mixture of urban and rural population was studied while in Odisha, all the participant in the study live in rural areas.
Migration
CATEGORIES DELHI ODISHA UTTAR PRADESH TOTAL
Migrated from another place 41 3 25 69
Have left from before 9 47 25 81
Total 50 50 50 150
Table II-1
Own House/Rented House
CATEGORIES DELHI ODISHA UTTAR PRADESH TOTAL
Own House 31 45 45 121
Rented House 19 5 5 29
Total 50 50 50 150
Table II-2
In Delhi, the study was conducted in a Slum settlement called Govindpuri and an urban village called Lal Kuan, both located in Southern Delhi. Here, the people who participated
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were mostly migrants for other states. Twenty two percent (22%) of them originally belong from Uttar Pradesh while eighteen percent (18%) of them have migrated from Bihar. Apart from that, we interviewed people who came from the states – Kerala, Maharashtra, West Bengal, Odisha, Haryana, Rajasthan, Gujarat, Himachal Pradesh, Uttarakhand and also from our neighbouring country Nepal. The rest of the eighteen percent (18%) were local residents of Delhi.
Availability of Ration Card
CATEGORIES DELHI ODISHA UTTAR PRADESH TOTAL
Yes, APL Card 15 19 0 34
Yes, BPL Card 14 31 36 81
No 21 0 14 35
TOTAL 50 50 50 150
Table II-3
In Odisha, the research was conducted in the districts of Kandhamal, Ganjam and Dhenkanal. The participants were identified from 17 villages in Kandhamal District, 15 villages in Denkanal District and 6 villages in Ganjam District. Kandhamal is predominantly a tribal area and a backward district, Ganjam is the highest in terms of incidence of disability and a coastal district, and Dhenakanal is a mining area where migration is prevalent. Ninety percent (90%) of the participants in Odisha said they have lived in the same place for ages and have their own house while six percent (6%) of our participants mentioned migrating from other districts of Odisha. All the villages are rural where the primary occupation of people is agriculture. All the districts are considered backward and most of the participants live below the poverty line.
In Uttar Pradesh, the study was conducted in the districts of Lucknow and Barabanki. Lucknow is a predominantly urban area while Barabanki is in the rural area. The participants in our study from Barabanki belong to the Nindoora Village and the areas in Lucknow where the study was conducted were Bharatpur, Mohibullapur, Shankerpur, Shemra, Faizullaganj and Khadri. It was seen that fifty percent (50%) of the people who participated in the study are migrants and the other fifty percent (50%) are permanent residents. Migration, however was mainly seen as a phenomenon in Lucknow, where people from the neighbouring districts of Sitapur and Unnao come looking for better livelihood opportunities. Unlike Delhi, migration in Lucknow, was not cross-state but from other districts of Uttar Pradesh. Most of the urban population studied engages in daily wage
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labour, women work as domestic workers and some also deal in small scale businesses like small shops, street vending and other irregular labour work. On the other hand, most participants from the rural area of Uttar Pradesh are marginal agricultural labourers. Ninety percent (90%) of the people who participated in the study have their own house while the rest of the ten percent (10%) of them live on rent.
Religion
CATEGORIES DELHI ODISHA UTTAR PRADESH TOTAL
Hinduism 42 50 40 132
Islam 7 0 10 17
No Information Provided 1 0 0 1
TOTAL 50 50 50 150
Table II-4
While Delhi showed people following Hinduism and Islam, Hindus were the majority. Uttar Pradesh also, more or less, demonstrated a similar pattern with eighty percent (80%) of the participants being Hindus and the rest of the twenty percent (20%) - Muslims. On the other hand, all the participants in Odisha were Hindus.
Commonly, the economic standard of most of the people was poor. Some of them had ration cards and some did not. Families complained that they have been running around to get the ration card that they had applied for a long time ago. The scenario in Delhi was the worst as only twenty eight percent (28%) of the participants in Delhi has BPL cards and most complained about difficulties in getting ration. Thirty percent (30%) of the participants in Delhi have APL Cards while forty two percent percent(42%) of them have no cards despite of their poor economic condition. Many of those who do not have ration card have applied for it years ago. Some are still running around for it while some others have lost hope and have given up. On the other hand, in Uttar Pradesh seventy two percent (72%) of the people said they have a BPL card while the rest of the twenty eight percent (28%) did not have any cards. In Odisha, sixty two percent (62%) has BPL cards and thirty eight percent (38%) has APL Cards. In both UP and Odisha, people talked about having other cards like Antodaya card, Medical Card, MGNREGA(job) Card etc. from which they have periodically derived various other benefits.
In Odisha, seventeen percent (17%) of the participants said that their child’s name in enrolled in the ration card against forty eight percent (48%) of the participants in Uttar
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Pradesh. Sadly, no one in Delhi mentioned having their child’s name enrolled in their ration card.
We saw that people face various obstacles in their path to development because of their origin, identity, cultural practices and economic condition. A person or a family being a migrant, working in the unorganized sector, can often does not have essential documents like identity proof, residential proof, rent agreement etc. which again has their own consequences. For example, disability certificates or ration cards are not issued if local residential proofs or identity proofs are not available. That is the common reason why only a few families among the participants in Delhi have ration cards and a few children have disability certificates.
In Delhi, only twenty four percent (24%) of the participating children have disability certificates. Among the rest of them, many have applied for the disability certificates and have run from hospital to hospital to get it issued while some others have not even applied because they do not have the necessary papers for it. A similar situation can be seen in Uttar Pradesh where fifty percent (50%) of the children who participated in the study have disability certificates. On the other hand, we observed that all the children who participated in the study in Odisha have disability certificates. From this, we can draw an analysis –
i) Among the participants in Delhi, eighty two percent (82%) were migrant families and eighteen percent (18%) were permanent local residents where only twenty four percent (24%) of the children have disability certificates and twenty eight percent (28%) of the families have ration cards.
ii) Fifty percent (50%) of the participants in Uttar Pradesh were migrants from other districts while the rest of the fifty percent (50%)were permanent residents. Surprisingly, exactly fifty percent (50%) of the children have disability certificates while seventy two percent (72%) of the families have ration cards.
iii) Ninety four percent (94%) of the participants in Odisha are permanent residents in their current area whereas the rest of the six percent (6%) are migrants from neighbouring areas where all children have disability certificates and sixty two percent (62%) of the participating families have ration cards.
On the basis of the above points, we can certainly say that being local resident in a particular area acts as an advantage in availing standard certifications and entitlements. For instance, we can take the case of Delhi – the city has faced huge immigration of people from less developed and backward areas of the country, most of who live below the poverty line and therefore in need of the meagre amounts of the government funded social security. The procedure of availing these benefits demands documents like permanent local residential proof and voter identity card that migrants do not have. These factors
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diminish the possibility of getting social security and people easily lose hope and even if social security is available. Further, the amounts are so little that it hardly serves a purpose. This again means that they cannot have a disability certificate or pension. The child and the family start with a disadvantage making them more vulnerable in their right to access free and compulsory education.
Further, the participants in our study have the commonality of lack of resources that result in their vulnerability in society. Through this study we will argue that these factors have a profound impact on the fulfilment of the child’s Right to Education.
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C H A P T E R III
Children who are Attending Schools
Among the One Hundred and Fifty (150) STATES NUMBER OF Children who participated in the Study, SCHOOL GOING eighty Four (84) were going to school – CHILDREN Twenty-two (22) each in Delhi and Uttar STUDIED Pradesh and Forty (40) in Odisha. Among these conveniently selected children, Delhi 22 Twenty-four (24) have Intellectual Disabilities, Nineteen (19) have Physical Uttar Pradesh 22 Disabilities, Fourteen (14) have Hearing Impairment and Thirteen (13) have Visual Odisha 40 Impairment among others disabilities as TOTAL 84 shown in the table below. Table III-1
Age of Entry into School DISABILITIES TOTAL Field experience of organizations, who have been working with children with Physical Disability 19 disabilities for a number of years, shows Cerebral Palsy 11 that children are reaching both organizations and the school earlier than Hearing Impairment 14 they used to. In areas where organizations have been working in communities a trust Intellectual Disability 24 grows and referral networks of parents Multiple Disabilities 3 and community members spring up drawing out families with younger children. Visual Impairment 13
What is extremely encouraging in our TOTAL 84 sample of eighty four (84) school going children, is that the majority, sixty eight Table III-2 (68) have entered school between the ages of 5 (five) to 8 (eight). While we cannot claim this to be a definite trend, this certainly bears further investigation. Children entering school at an early age will have greater chance at inclusion than a child who has to break through in a class at a later age.
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STATE CHILDREN ENTERING SCHOOL BETWEEN THE AGES OF 5 TO 8
Odisha 39 out of 40
Delhi 17 out of 22
Uttar Pradesh 12 out of 22
Table III-3
However, even though the majority of children have entered school at an early age, the experience of admitting the child to school has not been a happy one for a significant number of parents. Although fewer schools are rejecting children outright, we find that they are finding different ways of saying “no”.
For example, twenty five (25) out of forty (40) parents of 40 school going children in Odisha faced difficulty in getting their children admitted to the school. In Delhi, ten (10) out of twenty two (22) families felt harassed during admissions.
Teachers used the disability of the child to try and refuse admission to children. Parents report having to go again and again and persisting despite humiliation till school authorities give in.
In as many as twelve (12) instances in Odisha, teachers first insisted that the child be put into a special school. It was the support of AAINA, the civil society organization that was working in the area that enabled families to get their children into the general schools.
Joining School Late?
A smaller number among our participants – fifteen (15) children entered school later than the age of eight. This was particularly evident in Uttar Pradesh where nine (9) out of twenty two (22) children entered the school later than the age of eight (8) years.
The negative attitude of the school teacher and authorities prevented some parents from persisting and advocating for their child to be enrolled in the school. “the attitude of the school authorities was not good Some families are still not aware that their child towards US and our child” - a with a disability has the right to go to school. parent said – “They used to drive us out saying that this “Child was not able to hear or speak. Parents were not sure that the child would get child does not belong to this admission.” (Uttar Pradesh) school” ( Delhi)
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Sometimes the impairment of the child is such that parents do not feel that the child is ready to go to school.
At least three families from UP shared that - “child was sent late to school because of the locomotor (physical) disability of the child”.
For the majority it was the support and advocacy of the civil society organization they were linked with, that finally enabled the admission of the child into school.
Some families had approached the school earlier but been turned away with the advice that the child should go to a special school.
“When I went to school for admission at her proper admission age, they refused to admit her saying that she was mentally retarded” – says Priyanka’s mother, Uttar Pradesh
The RTE Act mandates admission in a class Many Parents of children with appropriate to the age of the child if the child is disabilities felt that their coming in later than the age of six. It also mandates child would not get admission that this child will have a right to receive special due to their disability. Some training in such a manner and time limits as may be parents were turned down by prescribed. (Chapter 2 section 4). Yet none of the the school because of their children in our sample who have entered school late child’s disability. Because of this, some children were only have received any kind of special training. able to get into school at a Some have been admitted to class one and are later age. facing grave barriers.
Documents for Enrolment
The RTE Act specifies that “no school or person shall, while admitting a child, collect any capitation fee and subject the child or his or her parent of guardian to any screening procedures” sec 13 (1).
“No child shall be denied admission in a school for lack of age proof”. Sec 14 (2)
It is encouraging that in Uttar Pradesh and Odisha very few children were asked to produce documents such as the birth certificate or even the disability certificate for admission.
However, large numbers of families from Delhi admit to feeling harassed by the attitude of school authorities and the demand for all kinds of documents. A range of certificates from birth certificates, caste certificates to ration cards and other proof of identity were asked for.
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“Their attitude was not good. First they were for asking this or that document. After submitting everything they kept postponing admission” (Delhi)
“The school refused to give admission unless we provided an affidavit of age” (Delhi)
“They do not care about our economic situation and ask for a lot of papers. They ask for anything at any point of time. Asked for a lot of papers during admission and it was difficult to provide these” (Delhi)
No Tests, No Interviews during Admission
Although families have felt harassed and humiliated by the attitude of school authorities, the majority of children did not have to go through any interview or test to get into school in all three states. And neither did their parents. Where they did, it was a private not a government school
STATE NO FEE CHARGED Free Education and the Provision DURING ADMISSION of Entitlements The majority of parents who Odisha 37 participated in the study did not Delhi 20 have to pay any fee upon entrance for their child. All were given money Uttar Pradesh 21 to buy uniforms.
Table III-4
What seems to be emerging from our analysis is that while the administrative procedures for admission seem to be increasingly following the letter of the law, the system is still not accepting the child with disabilities with open arms. The ‘push out’ factors are not only in the attitude of school authorities but also in other systemic issues as we see further.
Quality Education
Multiple sections of the RTE Act must be read together if we are to paint a picture of what is meant by quality education under the law. Section 8 of the law with its strong emphasis on non discrimination of the disadvantaged and weaker groups, access to schools, provisions of adequate infrastructure, learning materials and curriculum and trained teachers is perhaps the most comprehensive in defining quality. Add to this the Section 17 which prohibits physical and mental harassment of the child and Section 29 that envisages an education that is child centered and child friendly, a curriculum based on constitutional values and continuous and comprehensive evaluation.
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Alongside this, the rules of some these sections make specific commitments for the child with disabilities.
Model Rules (section 8)
For the purpose of this section of the RTE Act the model rules states that:
i. The State Government/Local Authority shall ensure that access of children to the school is not hindered on account of social and cultural factors1.
ii. child attending a school of the State Government or local authority shall be entitled to free text books, writing materials and uniforms.
child with disabilities shall also be provided free special learning and support material.
iii. (3) The State government/local authority shall ensure that no child is subjected to caste, class, religious or gender abuse in the school.
iv. the State Government and the Local Authority shall ensure that a child belonging to a weaker section and a child belonging to disadvantaged group is not segregated or discriminated against in the classroom, during mid day meals, in the play grounds, in the use of common drinking water and toilet facilities, and in the cleaning of toilets or classrooms. 2
With all these entitlements in place what is the experience of the eighty four (84) children with disabilities who are enrolled in school in rural Odisha, rural and urban Uttar Pradesh and urban Delhi?
Access to School (Provision of Transport)
Apart from social and cultural factors and the discrimination on the basis of disability, the lack of transport is a major reason why children with disabilities do not reach schools or drop out of school.
There are many children with disabilities who will face a significant barrier in moving from one place to another on their own. Families living in poverty will not have the resources to fund and arrange transport for their child.
1 RTE Model Rules, Part III, Section 4, 8 2 RTE Model Rules, Part III-A, Section 5
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Our policy makers recognized this fact as early as 1995 when chapter 5 (Education) of the Persons with Disabilities Act mandates the provision of transport to children with disabilities going to school through a scheme.
The model rules of the RTE Act also commit to “endeavour to make appropriate and safe transportation arrangements for them to attend school and complete elementary education” [Sec 4, (7)]
Of the eighty four (84) school going children, except for ten (10) children in Odisha, all those attending the government school have not been provided the facility of transport.
In Odisha out of the forty (40) STATE PROVISION OF TRANSPORT BY children in school, ten (10) are THE STATE getting an escort allowance of Rs 3000 per annum under SSA. The Odisha 10 (escort allowance) children are using the service and going to school with escorts. This Delhi 0 provision is meant for children with locomotor (physical) and visual Uttar Pradesh 0 impairment. Table III-5
“Hari, 12 years old is the only son of his parents. Hari has cerebral palsy and belongs to Kamakshyanagar in Odisha. He was deserted by both parents and left to the care of his grandfather. The grandfather has financial difficulties and found it difficult to push for his education. With the intervention of AAINA, Hari was enrolled in the Modal UP School. During the year 2011 Hari got the BANISHREE Scholarship from the Block. After that he was selected for escort allowance of Rs-300 per month by Sarva Sikshsha Abhiyan. This has encouraged the grandparents to send Hari regularly to the school.”
As happened with Hari, research and experience shows that provisions such as these encourage families of children with disabilities to send their child to school. For children who need support to move from one place to another, this allowance is a must.
Walking to School with Friends
Walking to school with friends/ peers is a great sign of inclusion. What is encouraging here is that most children with disabilities are walking with friends and peers from their
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community and not alone. What is also equally encouraging is that children with intellectual disability who are often more excluded than others are also walking to school with brothers, sisters and friends.
In Odisha, twenty four (24) children walk to school with friends and others walk alone.
Of the twenty two (22) school going children in Uttar Pradesh, seventeen (17) are able to walk to school. Some walk by themselves and others go with friends. Two(2) are taken by their mothers.
In Delhi, twenty one (21) out of the twenty two (22) school going children do not have transport. They either walk to school with friends or are accompanied by parents or grandparents. Two parents use the wheel chair to take the child to school. Both are children who face significant difficulty in moving from one place to another. Two children are able to use public transport and take the bus and then walk to school. They are aided by the fact that children with disabilities use the bus in Delhi without having to pay for it.
In both UP and Delhi, children who do take a school bus are attending private schools or special schools run by the government. For example, Nisha and Chandani are both hearing impaired and attending the Government Secondary School for the Deaf in Kalkaji, Delhi. Both use the transport that is provided by the school to go and come from Govindpuri where they stay.
The Importance of Transport
Walking to school with friends is an activity that must be encouraged, and the provision of transport may not be necessary for all children with disabilities. However, careful evaluation of requirements is necessary and the lack of provision of transport for those who need it, is likely to lead to dropouts in the near future. The lack of provision of transport is also a big factor in children with disabilities not being able to enter schools.
“Pawan(Delhi) has club feet. When he was very young, his parents did not have the money to get his feet corrected. As a result today at the age of 10 Pawan walks taking weight on the side of his feet. He cannot wear shoes and walks barefoot to school and back. Pawan has just been admitted to school in 2012. He finds it difficult to walk for long distances in that condition. At the moment he is making a superhuman effort to get educated! Already, he has asked AARTH-ASTHA to get him a wheelchair so that family members can wheel him to school.”
“Kulsum is slowly loosing her eyesight. At present when she goes to school, it is with a group of friends. Kulsum is extremely shy and retiring and will not ask for help. Already, she misses many
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days in school. Unless some systems are put into place soon, it is likely that the lack of transport will be one additional barrier that Kulsum would need to battle to continue to get educated.”
“Sonia’s grandparents are responsible for her. Her mother is no more and her father will not take care. Sonia loves to run about and her grandparents are worried that she may get lost if she goes with friends. At present her ailing grandfather takes Sonia to school and picks her up. The grandparents are worried about Sonia’s safety and security. What will happen if they are not there?”
Of the twenty two (22) children who go to school in Delhi, one child is cared for by grandparents and four (4) live with only one parent. In situations where the family depends on only one person or has no fall back measures, the child comes to school surrounded by insecurity.
“Ruby, seven years old, lost her father recently. Her mother, now alone, works in a factory. In the morning she wheels Ruby to school about half a kilometre away. In the afternoon she relies on the kindness of her employer to go and fetch Ruby and take her back home. She leaves her child alone at home and then goes back to work. Ruby’s mother has written to the school to arrange transport for her child. The school has refused to even accept the letter. (Delhi)”
What is very clear here is that there are a range of reasons why children with disabilities will require transport. Apart from challenges of mobility faced by children with movement difficulties and visual impairment there are also considerable issues of safety and security as shared by families of children with intellectual disabilities, children with cerebral palsy and multiple disabilities. In the later sections of the report we find that the lack of transport is a major reason why many children are out of school.
What do Families Want?
When asked for suggestions the majority of families have felt strongly that the provision of transport is required to enable the child to travel more easily to school and back. Seventeen (17) out of twenty two (22) families in Uttar Pradesh stressed the need of transport for their children.
In Odisha, nineteen (19) families requested transport or escort allowance for their children.
In Delhi, seven (7) families felt that the provision of transport would make it easier and safer for the child to continue schooling.
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As we look at the rules RTE of the three states, we find that there is a strong commitment for provision of transport especially for children with disability. It is now a question of implementing the entitlement!
Delhi In respect of children with disabilities which prevent them from accessing the school, the Government or the Local Authority as the case may be shall make appropriate and free transportation arrangements to enable them to attend school and complete elementary education. [(Part IV, 6 (5)]
Uttar Pradesh In respect of children with disabilities which prevent them from accessing the school the Government/Local Authority will endeavour to make appropriate and safe arrangement for them to attend school through committee and complete education.[Part IV (6)7]
Odisha In respect of children with disability, which prevent them from accessing the school, the local authority with the prior approval of the Zila Shiksha Adhikari, shall endeavour to make appropriate and safe transportation arrangements for them to attend school and complete elementary education. [Part-III (4)-4]
Barrier Free Environment
The provision of ramps and rails cannot be the only indicator of a barrier free school under the RTE Act.
The RTE Act talks about provision of quality education as per the schedule of the Act. Apart from outlining the teacher student ratio, the different kinds of spaces this schedule also talks about spaces being barrier free.
Unfortunately for years now the official interpretation of ‘barrier free’ has become the ramp and rail. A school that provides any kind of ramp with rails can be said to be “barrier free”. However, barrier free environments are not only to do with moving from one place to another. They are also to do with spaces being designed in ways that everyone can use them and that children are safe and secure within them or while using them. Further, participation in all aspects of school life must be discussed under the concept of a barrier free environment.
Barriers in physically accessing different spaces become compounded for:
1) Children who need personal assistance to move from one place to another.
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2) Children who use wheelchairs
3) Children who move differently for example, on their hands and knees
4) Children with vision impairment
5) Children who can move independently but need support carry out activities
In its strong clause on non discrimination the RTE recognizes that discrimination can take place while accessing many different aspects of school life. The model rules of the RTE for section 8 and 9 elaborate:
For the purpose of clause (c) of section 8 and clause (c) of section 9, the Government and the Local Authority shall ensure that a child belonging to a weaker section and a child belonging to disadvantaged group is not segregated or discriminated against in the classroom, during mid day meals, in the play grounds, in the use of common drinking water and toilet facilities, and in the cleaning of toilets or classrooms [Part- IV (7)-4].
For children with Children who could not Access different areas of disabilities, the States school: playgrounds, mid-day meal, water taps and dimensions of toilets access are both physical and Playgroun Midday meal Water taps Toilets social. We looked ds at some areas of Odisha 17 13 14 17 the school that Delhi 3 2 2 2 children must be Uttar Pradesh 4 4 4 5 able to access if Table III-6 they are to get an education; toilets, water taps and the mid-day meal.
When families in Odisha were asked why their children were unable to access these areas of school they pointed to a range of barriers, fifteen (15) said that “the child was not capable to reach different parts of the school”, they needed the support of another person to go from one place to another someone else.
Two (2) children were physically able to go from one place to another but needed support to do all the activities. For example, a child may get to the venue of the mid-day meal but need to support to eat and three (3) said that there were areas of the school that were not safe and accessible for the child to move out.
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Accessing and Using Toilets
Extremely dirty toilets with no water supply are the common picture that emerges in all three states.
Inaccessible toilets are big issue for all children. Twenty four (24) children out of eighty four (84) are unable to use the toilet because of its inaccessibility. Children with disabilities also report not wanting to visit the toilet because it is dirty and there is no water.
As parents and children share..
“The toilet is very dirty and I need help to go to the toilet. But I don’t like asking help for it. So I avoid going to the toilet.” (Delhi)
“Children are unable to use toilets because they are not disabled friendly. They have to go out in the open.” (Odisha)
“The child needs support to move from one place to another”. (UP)
“The child can access only familiar places, but cannot access unfamiliar ones because her vision is weak.” (Delhi)
“As the child is a wheelchair user, she can move around in other areas only if someone takes her around.” (Delhi)
Accessible toilets are no longer on our list of deliverables for a barrier free environment. The official conversation today stops at the separate provision of toilets for girls and boys. While this is imperative, the focus has to be that all toilets for girls and for boys are accessible to all children, including the child with disabilities. Apart from issues of physical access there are other dimensions that must be taken into account.
“Sometimes children need to be taught how to use the toilet. Sania (name changed) has intellectual disability. She tends to move out of class and roam around the school. The teachers refuse to take any responsibility for Sania. The toilets are extremely dirty and no one guides Sania on where to go. As a result she is unable to use the toilet and goes wherever she wants to. This only serves to reinforce the label she has already been given of being ‘paagal’ (mad),
The Mid-day Meal
The mid-day meal has been hailed by policy makers, researchers as a scheme that has succeeded in breaking the barriers that our society creates; barriers of caste, religion and class. For children with disabilities too, sitting with classmates and eating the meal can break the barriers that segregation brings.
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All children with disabilities except those attending the govt special school or private schools are getting the mid-day meal. The majority in our sample are sitting and eating this meal with peers. This is opportunity that supports inclusion in many ways. One of the first things that families of children with intellectual disabilities often share is that their children have now learnt to stand in a line, get their meal and eat with others. For children who often get excluded, these are important opportunities.
Yet, the difficulty arises when schools have to innovate to make accommodations for children; children who may require support to eat, or children who cannot move easily to the place where the mid-day meal is being served.
In Odisha for example, children sit on the ground are served the meal in the veranda. This is difficult for children with cerebral palsy or some children with physical impairments and they get stuck in their classes.
In Uttar Pradesh, the status of the mid day meal programme is almost the same. Children get mid day meal on the ground which is mostly served in the veranda of the school. There is no special arrangement for children with disabilities and they have to depend on their friends to collect food on their behalf and serve it to them.
What are the strategies that schools have put into place to deal with these situations?
Friends will often come and ‘help’ the child, get their food for them and wash their plate for them. Where children need support in eating, it is often the parent who has to come to school to help their child to eat. At least four (4) parents from our sample in Odisha said that they had to come to school and feed their children. Although not part of the study, in Delhi too we have examples of children whose parents have been asked to come to school and help them eat and use the toilet. In the absence of a system of personal assistance this requirement is probably not uncommon throughout the country. The question we need to ask is – Are these inclusive activities? It is important to look deeper into these strategies and ask;
Whether any attempt was made to enable the child to eat with all the other children and not get stuck in his/ her classroom?
Whether systems of support have been put into place by the school or whether the child is dependent on the goodwill of friends?
Whether the education system is going to provision for personal assistance for the few who are in education today and for the many who are yet to come?
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Whether any thought has been given to the rights of the child and to preserving the dignity of the child when they need a support?
For many children with disabilities learning to eat, with adaptation and support is a skill that needs to be taught. This is a life skill that does not come automatically to some children and will need to be taught in schools. At the moment, there is no provision for this within our system.
What Parents and Children Suggest?
“The school should have accessibility features so that the child can move around and the water tap should be installed in a manner which allows the child to easily drink water from it” (delhi)
“All the schools should have barrier free environment, all schools should be designed as plain surfaces and teachers should be cooperative.” (Odisha)
“Quality of midday should be improved.” (Uttar Pradesh)
“Arrangements should be made for child who is not able to eat by himself.” (Uttar Pradesh)
“Toilets are very dirty Toilets should be clean and accessible.” (Uttar Pradesh)
“Teachers should keep an eye on the children.” (Uttar Pradesh)
Child Centered Education
One of the tenets of child centered education is that schools must know their students. They must be aware of the abilities of the child, their learning style, requirements as well as the barriers they face. Given the age old separation of children with disabilities and the perceived lack of knowledge amongst educators on what to do with this child, it becomes even more important that knowledge is generated on how to support the child to participate in education.
For the child with disabilities once they are in school, it is important that there is some assessment of the child’s abilities, the barriers they face, the supports they require in learning and a plan for their education along with other children. The parent is an important partner in this process.
The RTE Act decrees that children should not be put through a screening test at the time of admission. Although they faced resistance, the majority of children in our sample did not have to go through any test or interview to get admission and neither did their parents. This is significant and welcome.
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However, not being screened for admission does not mean that there will be no assessment of the learning abilities and specific requirements of the child.
We asked parents whether the school had called them and discussed the learning needs of their children. Were they aware of any assessments of the learning requirements of their children? Were they consulted?
NOT AWARE IF THE SCHOOL NO ONE FROM SCHOOL HAS HAS ASSESSED THE SPOKEN TO FAMILY ABOUT STATE ABILITIES OF THE CHILD? THE LEARNING NEEDS OF THE CHILD?
Odisha 40 37
Delhi 18 17
Uttar Pradesh 18 18
Table III-7
Sixty eight (68) families have not been called by the school authorities to discuss about the learning needs of their child. They are not aware of any assessments being conducted in schools, nor have they been consulted on the needs and requirements of their child.
It is also true that most families have themselves not approached school authorities about the learning needs of their child.
Our colleagues from AAINA share “Sometimes parents are called to the PTA meeting or orientation meeting but the discussions are basically on larger issues. Specific discussion about their children’s need is hardly seen as a practice.”
The disconnect between the parent and school regarding the learning needs and specific requirements of the child is a grave situation. As we look deeper into the participation of the child within the system, we find very little understanding of the learning needs of children with disabilities.
Are Children Learning?
There are many children in our sample of school going children who are learning and happy learning. Children learn different skills in schools. They learn to sit, greet other people, stand in a line and wait for their turn, eat and drink with others and much more. Parents are happy when they feel that their child is going to school and learning new skills. When asked whether they felt that their child was learning in school, twenty three (23) out of forty (40) in Odisha said “yes”
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However, when asked whether they felt that their child was supported to learn in school, twenty five (25) parents felt that their children were not supported in learning.
We see this contradiction coming out very clearly in the interviews of many families. While families acknowledge that their child is learning but also feel that the child is not supported in school.
“Sonia’s grandmother laments the fact that the teacher does not give enough time to Sonia, that nobody cares about her safety as Sonia runs out of class and is roaming around the whole day. She tells us that when it comes to examinations, the teacher gets Sonia’s work done by her younger sister who is in the same class as her. She does not feel that Sonia is treated equally to other children in the class and says that the teacher herself tells me that all the children call Sonia ‘mad’. Yet when we ask her about whether Sonia is learning in school, she says ‘Yes’ and tells us “ before going to school Sonia knew nothing, but now she is learning to draw and write a little. She is learning to get her meal and eat with others.”
What we gather from this is that while children are picking up skills in school, they would learn much more and be happier if they were not discriminated against in schools, if teachers knew how to teach them, and if systems were in place to accommodate for their specific requirements.
All the families we asked reported that their children received the same school books from the school as other children, another entitlement that is seemingly well met.
Yet it is when children have specific learning requirements that difficulties arise within the school.
“Sudhir lives in Village- Badasuanlo, Kamakshyanagar, Dhenkanal, Odisha. He was identified as hearing impaired by his parents in the age of 4 when he was not able to speak a single word like his mates. Parents were very unhappy and wondered what would happen to their child. When he was six, his parents admitted him to the village school in class-one. Sudhir started attending the school regularly but was not accepted by his peers and teachers. After that he started going less and less to school. With the support of the village field workers of AAINA, Sudhir started learning some basic skills. Once again an effort was made by the village level worker of AAINA to convince the teachers in school that Sudhir needed to be educated and in school. In 2009, Sudhir started attending school on a regular basis. But his participation in class was limited because he could not hear. In the year 2011, after advocacy from AAINA, a hearing aid was provided to Sudhir and Banishree Scholarship was also provided by the Block administration. Even though he has a hearing aid, he is
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still excluded in class as the teacher does not know how to teach him or what to do when the hearing aid is not working. Sudhir is a very friendly boy. He mixes well, taking the midday meal with his mates and also participating in sports activities of the school. But his academic skills are extremely poor and this has not been addressed by anybody in the school. Although he studies in class-VI his academic skill are actually only of class-I. So while Sudhir is in school and even happy being with other children, the question we have to ask is whether he is indeed learning?”
“Kulsum is a shy 17 year old girl who lives in the Govindpuri, a large urban settlement in the southern part of Delhi. Her family migrated to Delhi from Kanpur, Uttar Pradesh some 25 years ago. Though they have their own house in Delhi, her family struggles to make ends meet. They are certified as Below Poverty Line and receive a monthly ration of 20 KG.
Kulsum and her siblings are being raised by their mother alone. However that did not stop her from doing all the things that children of her age do till the time her vision started to weaken. She started going to school at the age of 5 years, but eventually dropped out as she could not read her books and do well in exams.
Kulsum has a condition called Retinitis Pigmentosa. She has been losing vision, gradual fading vision that will eventually lead to complete loss of vision. Because of the condition she has been issued a disability certificate that says one hundred percent (100%) visual impairment.
Though she dropped out a year after she was admitted in school at age 5, members of AARTH- ASTHA had come to know about her in the community. They visited her and took the initiative of sending her back to the school at the age of 9 years. As a result of the collective effort of Kulsum’s family and AARTH-ASTHA, she now is student in a government school that is at a distance of half a kilometre from her home.
Kulsum walks to school with her siblings. Though she finds it difficult to go to unfamiliar places because of her weak vision, she does not has a choice as the school have not provided any transport services or allowance. Her mother worries about it especially because she has to cross a busy road.
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Kulsum’s family has gathered all their courage to send her to school even after she had dropped out. The difficulty she faces in reading continues. There has been no assessment of her learning needs. The school has not taken the initiative to support or train her with alternative forms of learning. Kulsum struggles in school and now finds it difficult to be regular. She misses on an average ten (10) days of school in a month. While at home, she takes care of the house and her nephews and neices.
Kulsum admitted that if there were accessible learning materials made available in the school, there would not have been any problem.
Kulsum’s mother runs her family alone and they live with the most common problems that most families in communities like Govindpuri have – poverty, lack of resources and a constant struggle for betterment. She has two other children older to Kulsum, both have Retinitis Pigmentosa. Delhi is a city with premier organizations working with children with vision impairment. Despite efforts of AARTH ASTHA to link Kulsum to these organisations she is unable to go there regularly because of lack of resources
The question we have to ask here is why should Kusum have to go to a specialist organization for her learning needs? Making all these facilities available to the child is the responsibility and duty of the school. If the school does not address these issues soon, another child may fall prey to the feeling of pointlessness of making all the effort to go to school, a feeling well-known among children with disabilities. In a class of more than 50 children who can take notes from the blackboard, write, read, Kulsum, unable to do the same, certainly feels de-motivated to go through the same every day. Her mother often asks members of AARTH-ASTHA to find a residential school for the blind for Kulsum. She would learn there. Here she is not able to learn even when teachers are caring towards her.”
The feeling of lack of support comes from a host of factors; negative attitudes, the lack of knowledge, the lack of support systems and the strong feeling that this child does not belong. As other parents shared....
“The teacher’s attitude to the child was negative.” (Odisha) “Teachers were too busy looking after other children and were not giving attention to their child.” (Odisha)
“Support material was available in the school but was not provided.“ (Odisha)
Similarly in Delhi
“The child is not getting any support because no one wants to support.” ( Delhi)
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“There is no system for providing support within schools.“ ( Delhi)
Participation in Different Aspects of School Life
Computer class, sports, music, dance – school functions – these are often high points of school life. What is the experience of children with disabilities? Do they participate and how??
“Tejpal – 10 years has a condition called Arthogryphosis. As a child he struggled hard to convince his parents to send him to school. It took two years for the parents to overcome their worry about the safety of their child in school and finally agree to sending him to school.. Tejpal uses a wheelchair to get to school. But once in school he is stuck in his classroom. Tejpal needs personal assistance to wheel his wheelchair from one place to another. At the moment he is dependent on the thoughtfulness of his friends. The school itself has made no accommodation for the child. No systems have been put in place that will enable him participate in all aspects of school life. He is unable to use the toilet and cannot take part in any games or activities outside the classroom. Tejpal’s sisters are his biggest advocates. They are convinced that their brother could easily become a computer whizz. He is so fast at using the mobile phone, playing all kinds of games. However in school today, Tejpal is unable to access the computer class. Tejpal’s teacher is concerned that he cannot sit for long hours because his back hurts. His solution has been to ask Tejpal to come to school only once a week. Such a solution is likely to result in a greater lack of participation in school for the child.
Unlike Tejpal other children are able to physically move from one place to another but face barriers in participation because of the way school organizes activities – or the underlying thinking that this child cannot participate.”
“Neha, 12 years old lives in the Govindpuri slum of South Delhi with her five siblings and parents. When she was three years old the family realized that Neha was able to understand more slowly than other children around her. She is able to go to places with which she is familiar but still needs support when dealing with new tasks and new places. She prefers to play with children slightly younger than herself As a younger child, Neha was extremely withdrawn and would burst out crying if anyone tried to interact with her. However, over a period of time with support to participate in activities with
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other children, Neha has slowly but surely broken barriers and is blossoming into a bright smiling child. At the age of six (6), she was enrolled in a government school nearby. Neha got admission in school quite easily ‘because she does not look disabled’ said her mother. But once there, many barriers seem to have sprung up in her full participation. Neha is able to go about the school and different areas of the school without difficulty but it is not able to participate fully because her learning requirements are not met.
According to her mother Neha is often just roaming around the water tap…. In class the teacher does not simplify the material to be taught so Neha finds it difficult to understand the lesson. Disinterested – she roams around. She goes to computer class but no one teaches her, she goes for outings but the teachers do not explain to her where she is going and why. Every year, Neha’s mother battles with the school that tells her that her child cannot learn anything and must be sent to a special school. Neha herself is now battling going to school.”
When children with disabilities are able to participate in different activities of the school, they flower.
However, children with disabilities often become bystanders in activities such games, art, music and drama when it is difficult to adapt these activities to their needs or because of lack of accessibility. Often it is just the feeling of the teacher that the child cannot do it that keeps them away from the activity.
In Uttar Pradesh six (6) out of the nineteen (19) who answered the question did not participate in activities such as drawing, music and dance. Eight (8) out of the eighteen (18) who answered did not participate in school outings. When asked why the child did not participate in these activities five (5) answered that the “child is not able to participate in school activities. The child is not able to move or walk”.
In Delhi, nine (9) out of the twenty two (22) who answered did not participate in sports activities. One of these said that there was no sports activity organized for children with disabilities. Six (6) out of the sixteen (16) answered that they did not participate in activities such as drawing, music and dance. ‘Yes, I participate in drawing only which is separately organized for children with disabilities” said Sunita who studies in a secondary school in Delhi.
When asked why children did not participate a range of reasons were given. These ranged from difficulties of the child to move from one place to another, to the child being very
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shy and reserved, to a child being separated from these activities because she is intellectually disabled.
“Sonia is a child with intellectual disability, so the school thinks she cannot understand at all and therefore separate her.” ( delhi)
“Even if she does participate there is no role for her.” ( Delhi)
In Odisha, twenty two (22) out of the forty (40) children did not participate in sports activities, eighteen (18) were unable to participate in school functions and ten (10) did not participate in activities such as drawing, music and dance. When asked why we get a range of reasons.
“Children shared that they are often kept out from the team as the teachers feel they are not capable of understanding the rule of the games. Playground activities sometimes involve children with hearing impairment but children with other disability are left out. No inclusive games are practiced or even promoted in schools thus violating the right to development of children with disability.” (as shared by members of AAINA)
“Nobody is able to understand what the child is saying (Odisha) In case of a child with Cerebral Palsy, having slurring/labored speech neither the teacher nor others bother or give time to understand what the child is saying and thus they are kept away from the games.” (members of AAINA)
“The child participates in only those things which she is able to do.” (Odisha)
“The child is afraid of the crowd and also not able to walk on his own” (Odisha)
“Mental status is not good” (Odisha)
“Teachers do not encourage children with disability to get involved in sports or extracurricular activities even they do not have vision to do so.” (Uttar Pradesh).
Non participation: A focus on Impairment
As we see, the reasons given for children not participating in different activities dwell largely on their impairment and their inability to participate. The impairment of the child becomes the reason for their lack of participation. Schools and families and often educationists internalize these arguments.
Arguments such as these cannot hold any value in our analysis as children with disabilities have an equal right to education. The reason for their lack of participation cannot be their impairment. Instead what we see is a system that
Lacks accessibility
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Lacks the ability and skill to provided reasonable accommodation
Lacks the skills to adapt activities to suit the needs of the child
Lacks belief that the child can and should participate in all aspects of school life
Situations such as these often challenge the status quo. Activities need to be adapted or changed for this child. Reasonable accommodation and supports need to be thought through at an individual level and put into place. It is here that the education system must become flexible, walk that extra step and innovate.
The UN Convention on the Rights of Persons with Disabilities
The UN Convention on the Rights of Persons with Disabilities consistently underlines the fact that there can be no discrimination on the grounds of disability.
Article 24 (Education) of the UNCRPD details the strategies and entitlements of children with disabilities in education. It argues for the provision of reasonable accommodation for the child with disabilities as well as the provision of individualized support to children with disabilities.
Teachers: The Unique Situation of Children with Disabilities
Children with disabilities are the one set of children who are seen to require specialist teachers to teach them. Because of the historical segregation of children with disabilities, cadres of specialist teachers have been trained all over the world. The same has happened in India.
However, with the movement towards inclusion the role of the general teacher and the specialist teacher needs to be clarified. The kind of training both undergo need to be re- thought with clear policy directions.
Parents acknowledge and appreciate teachers who treat their children like any other child, give opportunity, who call their children by their name, who give attention and opportunity to their children, try to communicate with their children. However, a significant number of parents in all Delhi, Odisha and Uttar Pradesh also feel that teachers do not encourage their child – to communicate and participate in school life.
There are strong feelings amongst the majority of parents who participated in this study that school teachers do not know how to teach their children. This is coupled with a feeling of the rejection of their children in so many different ways. The unwillingness of
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teachers to take responsibility for children with disabilities is another aspect of this rejection.
Many of these factors come together when parents demand that special educators must be there in schools. The lack of special educators and resource teachers is felt sorely by all parents of children with disabilities.
However, no special educators or resource teachers visited the forty (40) children in our sample in Odisha. In Delhi, despite a High Court order for two special educators in every school and despite complaints to the Delhi Commission for the Protection of Child Rights, children in our sample had not seen any as yet. The experience of children in Uttar Pradesh seems to be far more positive than the experience of children in Delhi and Odisha. About six (6) children out of twenty two (22) had access to a special educator and felt that that experience was very helpful. Here, it is mentionable that after a lot of advocacy effort of SPARC-India, now, special educators visit the schools few times a month.
What do parents want?
They want teachers to make the attempt to involve their children in activities and explain what is happening in class
Make sure that their child is learning equally
Teachers should make sure that they listen to all children
Teachers should try and explain what is happening in the class to children
Teachers should be positive towards the child with disabilities and the child should be taught according to their needs
“Teachers have to know how to teach my child” say parents. They want both teachers and other children to cooperate with the child with disabilities in Class.
Habilitation and Rehabilitation: Learning Specific Skills
Kajal, 12 years old, has Cerebral palsy. There are three members in her family: father, mother and elder brother. Her father and elder brother work as casual labour. The monthly income of the family is around 3000/month. Their house is made of clay and wood and the condition of the family is not good.
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SPARC-India met Kajal in the year 2010 through the CBR Project. When the field worker met her, she was bed ridden. She was unable to move her body parts easily. The field worker motivated the child and family and therapist of SPARC-India facilitated access to assistive devices and provided therapeutic support. Her mother was trained in how to support her in activities of daily living. After six month of continuous efforts of field workers, parents, therapist and educators there was a dramatic change in Kajal’s abilities. Kajal has also received a wheel chair with the support of a DPO (Disabled Peoples Organization). Seeing the change, the therapist and field worker started counselling Kajal’s parents to send her to school. In the beginning parents were hesitant but they changed their mind due to Kajal’s own interest in studies and enrolled her in school when she was 11 years old. Kajal’s mother says “We were hopeless and sometimes I wanted to throw her in the well. But when we see her improving and her interest in studies my pain vanishes”.
Like Kajal, some children with disabilities will require to learn specific skills if they are to participate in equally in education. For example, children with significant vision impairment will need to learn to move from one place to another. Someone will need to teach them Braille if that is what they require. A large number of children with cerebral palsy will need the services of a physio or occupational therapists who will enable them to use correct postures or develop skills of using their hands or standing to name a few.
Learning to use assistive devices is another skill that the child must learn. The development of these skills has to be seen as a basic requirement and right of the child.
For the child with disabilities who goes to school and spends about five hours in school five days a week, the learning of these skills have to be a part of the school curriculum. If all children are to be in school and education is the major institution for the participation of every child, then habilitation and rehabilitation services must converge here.
Rinky Mallick is studying at Badasuanlo primary school, in Dhenkanal, Odisha. Her father Ranjan Mallick is a Truck driver and mother is a house wife. Rinky has cerebral palsy. When the staff of AAINA met her in 2009, she was not attending school because neither the parents nor the school teacher believed that Rinky was ‘fit’ for school. So while her name was on the rolls of the school, she was not attending the school. It seemed that nobody was interested in her future. Regular physiotherapy and educational intervention enabled such tremendous development in Rinky that both parents and teachers of the school could not believe what they saw. With support Rinky became more independent in daily living activities
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Rinky attends school regularly. During the year 2010 Sarva Siksha Abhiyan (SSA) provided a wheel chair and escort allowance (Rs-3000/- per year). With the advocacy of the AAINA staff the Banishree Scholarship (2500/- per year) was also sanctioned by the Block administration and she got her disability certificate from the district medical board. Today, Rinky’s parents are hopeful for her future. With all this effort, Rinky is now attending school regularly. But unfortunately, she continues to face discrimination and is not participating in the school activity.
The Sarva Shiksha Abhiyan has an agreement with the ADIP scheme of the Ministry of Social Justice and Empowerment. Through this agreement, assistive devices provided in the ADIP scheme are to be given to children with disabilities in schools.
Eight children from Odisha received Braille books, hearing aids a wheelchair and other learning materials. Only one child in Uttar Pradesh received any assistive device. The rest were given by SPARC- India with whom they are associated.
Children in schools in Uttar Pradesh did not get any assistive devices from the school. Instead, these were provided to them from the organization they are connected with ie SPARC India.
Of the eighty four (84) school going children in three states, seventy six (76) children are not receiving any rehabilitation facilities such as physio therapy or occupational therapy or mobility or auditory training etc. The majority of children who needed these services reported getting them from the organizations they were connected to.
Although we are aware that different States have evolved different ways of providing such services through the Sarva Shiksha Abhiyan, such services are far too few and lack quality. Equally scant are the services provided by the National Institutes for different disabilities run by the Ministry of Social Justice and Empowerment and the rehabilitation departments in large government hospitals in the country. As more and more children with disabilities come into the education system, there will be a need to upgrade these services and provision for them. There will be a real need to work on the convergence of these services with the education system.
The RTE Act in section 8 talks of ensuring that the “ child belonging to weaker sections and the child belonging to the disadvantaged groups are not discriminated against and prevented from pursuing compulsory education on any grounds.”
The lack of habilitation and rehabilitation services is an important factor that will prevent many children with disabilities from pursuing and completing compulsory education and therefore need our urgent attention
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Non Discrimination: Are Children Treated Equally in School?
Do parents feel that their child is treated equally in school? We asked parents this question.
In Odisha there is a strong feeling of discrimination with the thirty four (34) families feeling that their child was not treated equally in school. A large number of parents reported that other children made fun of their child. There was no attempt made by schools to stop this.
In Uttar Pradesh there was a feeling that children were treated equally. The children who were not treated well were children who looked different. For example, children and others kept away from children who were drooling
In Delhi, the discrimination was felt strongly by parents of children with intellectual disability. The experiences range from outright rejection of the child with disabilities, calling the child names such as ‘paagal’ (mad) to ignoring the child and not allowing the child to participate in activities.
“Just making the child sit in class the whole day without paying any attention to the child.” (Delhi)
“Not stopping the child from running out of class.” (Delhi)
“Teachers never pay even the least bit of attention to Sonia (intellectual disability). Even if Sonia goes out of the class they don’t stop her. So most of the time she remains outside the classroom.” (Delhi)
“The teacher treats Sandhya (intellectual disability) differently. She makes her sit next to her all the time, while the other kids enjoy their computer classes.” (Delhi)
“People in the school think that the child is mad.” (Delhi)
“All the children are inside the classroom while my child is out.” (Delhi)
UNCRPD and Non Discrimination
The strong non-discrimination clauses of the RTE must be read with the understanding of non- discrimination and equality in the UN Convention on the Rights of Persons With Disabilities. Article 5 of the Convention titled Equality and Non Discrimination speaks about the different kinds of discrimination that children and persons with disabilities face. This includes discrimination on the basis of disability, direct and indirect discrimination. The lack of reasonable accommodation is also seen as a form of discrimination against children and persons with disabilities.
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It is for this reason that the lack of supports, services and accommodation for the child must be seen as a form of discrimination. The lack of teachers who care and who know how to teach the child, the lack of support staff, the lack of systems in schools to enable participation must be seen as a form of discrimination. The plea of ‘not knowing’ what to do with this child must be now counted as discrimination.
In the same way, the attempt of the RTE Act to combat discrimination by giving a powerful voice to children and to parents of children (who are in disadvantaged groups) in the school management committees and a twenty five percent (25%) reservation in private schools must be monitored in the coming year.
School Management Committees: The Task Ahead
School Management Committees are to have a seventy five percent (75%) representation from amongst parents of children belonging to the weaker sections and the disadvantaged groups.
This means that parents of children with disabilities now must be included in school management committees throughout the country.
Very few parents who participated in our study were aware of the SMCs. Only two parents from Uttar Pradesh were aware of the school management committees. In Delhi as we write this report, it has taken a PIL in the High Court to begin the process of constituting SMCs. As of date very few have been constituted. It is only in Odisha that we see some positive signs with SMC’s having being formed in most schools.
The SMCs have important functions and powers. They are to -
Monitor the working of the school Prepare and recommend school development plans As per the Model Rules among other things, they are to -
Communicate in simple and creative ways to the population in the neighbourhood of the school, the rights of the child as enunciated by the Act: as also the duties of the State government, local authority, school parent and guardian
Ensure the enrolment and continued attendance of all children from the neighbourhood in the school
Monitor identification and enrolment of and facilities for learning by disabled children and ensure their participation in and completion of elementary education.
If School Management Committees are to ensure the inclusion of children with disabilities, they will have to understand the range of barriers that children with disabilities face in
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inclusion. What is significant is that ensuring the participation and completion of elementary education is clearly a part of their mandate. While the country goes on overdrive, empowering SMCs, this aspect cannot be forgotten.
Children Who are Enrolled and Yet Out of School
Maya is student of the 3rd standard in a government school in her neighbourhood. She lives in Nav Jeevan Camp of Govindpuri, a large slum settlement in the southern part of Delhi. Maya lives with her parents, 4 brothers and 2 sisters. Like most families in Govindpuri, her family migrated to Delhi some 30 years ago in search of better opportunities.
Maya is thought to be intellectually disabled. She has difficulty in understanding and people who know her well have opined that her behaviour is different from others. Maya’s mother shared that she could not speak till the age of 3. Even though she has learnt to speak now, she still needs to learn to complete activities such as wearing clothes the right way, doing everything in time etc.
Maya’s mother informed us that though she is enrolled in the school, she hardly goes to school. Today, Maya misses around 15 days of school in a month. The economic condition of the family is not good. It is even difficult to manage food which is why Maya’s mother can’t stop working. While her mother is working and her class mates are attending the school, Maya roams around Govindpuri the whole day.
The family struggled to get Maya enrolled in school in the hope that she would learn something. In the beginning, the school had said that this child does not belong in the school. Later they enrolled that child against a payment of Rs. 50. Within the school Maya is a child who despite being enrolled in a school is ‘out of school’.
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C H A P T E R IV
Children Who Have Dropped Out Of School
In our study of One Hundred and STATES NUMBER OF Fifty (150) children with disabilities DROP-OUT and their families, twenty-two (22) CHILDREN children were drop-outs. A separate STUDIED schedule was developed which Delhi 7 explored the various dimensions of being a school drop-out. Most Uttar Pradesh 6 importantly, we tried to understand Odisha 9 why children with disabilities drop- out from school, whether the TOTAL 22 children or their parents really Table.IV-1 wanted it or they did not have a choice, what hopes and aspirations the parents have of their children, DISABILITIES TOTAL and whether they would like to go Physical Disability 4 back to the school. Cerebral Palsy 5
Most of the children who dropped- Hearing Impairment 6 out out of school have severe or Intellectual Disability 4 multiple disabilities. We also found that some children were diagnosed Multiple Disabilities 3 with illnesses that gradually lead 22 them to disability. TOTAL
Table - IV-2
Classes in Which the Children Dropped-Out We can see from Table IV-3 that many students – eight (8) out of twenty-two (22) children with disabilities have dropped out at the very beginning of school – class 1. The number ‘8’ in the table may look very small but this is a huge indicator which is saying that there is something awry in the school system that troubles children with disabilities and creates circumstances that compel them to leave school within a year of joining.
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AGE DELHI ODISHA UTTAR PRADESH TOTAL Activities of Daily Living Class 0 0 1 1 (Special class) in special school Nursery 0 0 2 2 Class 1 5 3 0 8 Class 2 0 1 1 2 Class 3 2 0 1 3 Class 5 0 0 1 1 Class 6 0 3 0 3 Class 7 0 1 0 1 Class 9 0 1 0 1 TOTAL 7 9 6 22 Table.IV-3
Why Did the Children Drop Out of School? When the parents were asked the reasons of dropping out, we came to know about many things, some of which were shocking and some others were sad.
The mother of Pushkar, a child with cerebral palsy said
“School did not provide any transportation and it was difficult to pick and drop our child every day. Moreover, the teacher wanted me to stay with my child in school to take care of him, which was difficult for the family.”
The results of our study show a mixture of various factors that parents have held responsible for discontinuity of their child’s schooling. In Uttar Pradesh, three (3) families have said that poor economic condition of the family is one of the reasons for discontinuity of education. Though the schooling is free there are many costs associated with schooling that the family has to bear, many of these are facilities that the children are entitled to receive from the school such as – free copy books (text books are provided to them), free transport etc, which are not available to the children in any of the places where the research was conducted.
“Mayank is a 13yr old child with Intellectual Disability from Uttar Pradesh who was asked to leave by the school because he had to study in the same class for 2 years. His father and aunt also have intellectual disabilities while his mother devotes most of her time in the ‘Satsang’. Mayank’s mother
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suspected he was disabled when he was three (3) years old, which was later confirmed by the doctor.
The family is not able to fulfil all of Mayank’s needs because of their poor economic condition. There is no earning member in the family. They live on the small amount of money that was left by Mayank’s grandfather.
After being asked to leave that school, Mayank’s mother enrolled him in a special school called Drishti Badhit Samajik Sansthan, but after spending some years in the school his mother took him out as she thought his condition did not improve. His mother now says that she will teach him some skills and open a shop for him later or send him to work, but sending him to school is not an option.
This child is not in touch with the school or the SSA. They have not approached his family to take him back to school. The vulnerability of this child is not only a result of his disability but also of his family’s socio-economic conditions. Would Mayank be able to get a school education if the school authorities do not take an initiative to get him back to school? The government needs to think about it. However, taking him back to school will only work if the school is equipped to provide the necessary care and support to Mayank.
We also came across many instances where the school authorities insisted that the mother of the child or someone from the family of the child with disability stay with him/her and provide the care that is required, which in actuality should be the duty of the helper staff of the school. The questions that emerge here are about the availability of personal assistance for children with disabilities in schools.
“Sudeep is only eight years old and already he has been to school and dropped out. In 2010 at the age of 6, he was admitted to a government school. Within months he dropped out.
At first, the school told Sudeep’s mother that she must sit with Sudeep since he requires a lot of support. His mother agreed and for over two months, she went regularly to the school.
Although mother and son were in the class every day the class teacher did not acknowledge their presence. He did not make any attempt to get to know the child or talk to the mother. Following his cue the children too ignored Sudeep and his mother. Being a woman in an all boy’s school made Sudeep’s mother extremely uncomfortable. It was extremely difficult for her to carry her son to school and back every day. The conduct of the teacher made her feel humiliated, angry and frustrated.
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With the help of AARTH-ASTHA a complaint was made to the Delhi Commission for the Protection of Child Rights, the official body to redress grievances under the RTE Act. The commission ordered that a special educator be present in the school. Till date nothing has happened.
Parents of two (2) children from Delhi, two (2) from Odisha and three (3) from Uttar Pradesh have said that lack of school transportation facilities was one of the reasons of dropping out. Among other reasons is lack of knowledge on how to teach the child. Other strongly felt reasons by majority of the parents include the lack of sensitive helper staff and security at the school gate. Parents felt that their children would learn well if the teachers are sensitive and caring, who would give the required attention to the child with disability who finds it difficult to maintain pace with the non-disabled child.
Lack of care in school was strongly felt by parents in all three states. Some parents have complained that the teachers and the school staff do not keep an eye on the child. While the classes are going on, the children run away. There are instances where the children with intellectual disabilities in Delhi have run away from school to their home after crossing big busy roads. Many parents have expressed their concern for the safety of the child.
“Ravi is 13 years old today and not going to school. At 13, he sits for some time with his mother in her shop and then roams around the whole day.
Ravi has intellectual disability. He communicates through gestures and not by speaking. In 2011 Ravi was admitted to class 1 in a government school. Within months and before completing the class he dropped out. His parents said that Ravi kept running away from school and coming home and his teachers would not stop him.
On the way to home from school he has to cross a big and busy road. His parents worried that Ravi would get hurt in an accident or just get lost and they withdraw him from school.
Ravi’s mother feels strongly that there should be some arrangements to secure schools. Children should not be able to just run out of school. If teachers gave a little more attention to these children and taught them well he may have been able to study.”
“The experiences of Lingaraj Muni, a child with Hearing Impairment from Odisha is an example that shows how people get frustrated after trying for years to bring about necessary changes so
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that the child can go to school safely and learn. Lingaraj’s home is just in front of a busy road and his disability is a challenge for him to cross the road alone. The school does not provide any transportation facilities and his parents are farmers who goes to work in the fields early in the morning leaving him no option to manage to go to school. Lingaraj went to school for nine (9) years and had to leave schooling when he was in class Nine (9) after his family saw no result after their years of effort in pursuing the school to provide transportation.”
Many parents of children with disabilities lose hope and give up when the school does not initiate change even after repeated requests to create necessary conditions for their child to be able to go to school and learn, The busy schedules of the parents often do not allow them to always pick and drop their child to/from school. In Delhi, we have witnessed most children walking up to school with siblings or friends. Children with various disabilities like Cerebral Palsy, Visual Impairment, Intellectual disability or a child like Lingaraj Muni who has hearing impairment may face a lot of difficulty in walking to school, crossing busy roads. Here again, we see the need for school transportation. These are facilities provisioned by the RTE Act but still children are dropping out for the lack of them. Will they ever be implemented?
Some parents have also reported that the school refused to take any kind of responsibility for the child in school. One such instance is Sonu, a child with multiple disability (Cerebral Palsy and Intellectual Disability), whose parents told us about the school’s refusal to take responsibility of the child. They said that if the teachers and school authorities are sensitive, their child can go back to school and pursue studies.
Children Who Become Disabled “Shweta is a 10 years old girl from Nehru Camp, Govindpuri, who joined school in class 1 in 2009 and had to drop-out in class 3 due to serious illness. Shweta loved to go to school. Now, when the other children in the neighbourhood go to school she asks her mother when will she be able to go to school. Shweta’s mother is concerned about both her health and schooling and stresses that the school should give her admission.
At 2 years of age, Shweta was diagnosed with Ataxia Telangectasia - doctor said that due to this rare neurodegenerative disease, the immune system of the child will weaken in coming years and it might also cause difficulty in movement. As her condition became more severe, she left school. At 10 years of age now, she does nothing more than watching TV, sleeping and visiting her relative’s house to spend her time. Due to the weakening of her immune system, she always keeps unwell. She is dependent on others for her
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movement and most of the activities of daily living and her dependency is increasing as her condition progresses, limiting her movement only between the four walls of her house.
Today, though she dreams of going back to school with the other children in the neighbourhood, her mother says it will only be possible if there are adapted desks and benches, sensitive teachers and helper staff and some aid that helps her to coordinate her movements. The question still remains – Is the school equipped to accommodate this child with disability and to give her the care and support that her condition demands?”
Among the twenty-two (22) participating children, we find at least seven (7) children - five (5) from Odisha and two (2) from Delhi who have dropped out of school because they either became disabled or because their impairment progressed and there was a requirement of additional support from the school. Although this is a small number here, it is likely to be a significant number in the country and specific strategies have to be thought through for this child.
There are children who have fallen ill and who have become disabled when they are in school. These are children who would require greater support as their condition progresses. Among the children who have dropped-out, we have come across children living with conditions such as with muscular dystrophy (a condition that weaken the musculoskeletal system and hampers locomotion), Ataxia Telangectasia (a rare, neurodegenerative, inherited disease causing severe disability by causing difficulty with movement and coordination, weakening the immune system and preventing repair of broken DNA). Garima, a child from Delhi had dropped out of school in class 3 because she was diagnosed with Brain TB (Tuberculous meningitis) as a result of which the left side of her body was paralysed.
Among the children in Odisha, we have also seen children with disabilities like cerebral palsy and hearing impairment who have chronic health issues because of which they eventually dropped out.
There is continuum of concern that we must look at. From the child who falls seriously ill and misses large chunks of school to the child who acquires and impairment to the child who is already disabled and but has significant health problems.
There will be children like Shweta who has Ataxia Telangectasia and therefore will need more and more support with time as there condition progresses. The same can be said with the child who has Retinitis Pigmentosa or the child with Muscular Distrophy. These children also have the right to go to school and get an education. But, is the school equipped with the facilities that they will need to provide the care and support which is demanded by the conditions of these children? Is there an outreach of the school that
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meets the health requirement of the children on time? What is our education system’s answer for this child – it is here that the state must be its most proactive. However, when asked whether the school approached, only one (1) out of twenty-two (22) parents of children who have dropped out said that the school visited their house regarding re- enrolment of their child.
How Do the Children Spend their Time Most children who had dropped-out spend their time playing by themselves or with friends, watching television and doing other daily activities at home. We found that the girls are also involved in supporting their mothers in household work and taking care of their siblings. The children with low independence levels mostly stay inside and go out with support of their family or friends. Parents of only three (3) children said that their children go to civil society organizations working in their locality for non-formal education, vocational training, and various therapies.
We can see that except a very few children who have access to the non-formal education facilities set up by CSOs, the rest of the children are largely spending their time at home, doing daily activities, playing and watching television without being involved in any learning activity. As they grow up, they will find it difficult to participate in society and also in income generating activities as they have spent an alienated childhood, many of them hardly seeing the world outside the four walls of their homes.
These are facts from the grass-roots – from urban slums & villages and rural parts of the country. A study in another area is less likely to give a totally different picture. The pattern of deprivation of children with disabilities is same everywhere because the level of awareness and sensitization is same. What measures has the government taken to address the educational need of these children. And if provisions are already there on paper, are they implemented. If they are implemented, why are these children in their homes doing nothing?
Would Parents Prefer To Send Their Children to School Parents of most children said that they want their children to go back to school. However, they also mentioned that, it will only be possible to send them back to school if the school arranges facilities as per the requirements of their children. Almost all the participants in the study felt that the schools should be equipped with trained, experienced teachers and helper staff who should be caring and sensitive towards children with disabilities. The table below shows the number of parents who wanted to send their children back to school –
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WOULD YOU LIKE TO DELHI ODISHA UTTAR PRADESH TOTAL/ SEND YOUR CHILDREN PERCENTAGE BACK TO SCHOOL?
Yes 6 8 5 19 (86.36%) No 1 1 1 3 (13.63%) TOTAL 7 9 6 22 Table.IV - 4
The parents of the children, who did not want to send their child back to school, shared that their children are already too old to go back to school, which could be seen as the major reason for not wanting their children back to school. At the same time, they expressed an interest in availing of vocational training services for the capacity building of their children, which will also develop their level of independence and help them in future.
Suggestions from Parents
Parents’ suggestion for change in school –
i) Availability of transport services. ii) Availability of experienced teachers and helper staff who should be caring and sensitive towards children with disabilities. iii) School should be near to home. However, if the school provides transportation, this problem will be countered. iv) Availability of adapted desk and bench – proper infrastructure and teaching, learning materials. v) Availability of security at gate who stops the children from running away from school vi) Availability of vocational training facility.
School Authorities Responsibility Regarding Enrolment
Our findings when we had asked whether the school authorities have approached them for the re-enrolment of their child in the school, gives a view of how the schools have abstained from fulfilling their responsibilities. Parents of only one (1) out of twenty-two
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(22) children said that the school authorities have visited their house for enrolment of their child.
We observed that the interactions between the school and the parents are remarkably limited. We have found the many parents believe that they do not have a say in their child’s school. Though some of the parents drop and pick up their children from the school on a daily basis, they hardly visit the school to discuss about their child or maintain a relationship with the teacher and the school staff.
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C H A P T E R V Home-based Education?
Practice of Home-based Education was only STATES NUMBER OF DROP- observed in Odisha. It came to light that the OUT CHILDREN children with disabilities who drops-out from STUDIED school are automatically enrolled under the home-based education program. Nine (9) Odisha 9 children were found to be under this system of education in the state. Four (4) of them TOTAL 9 have Hearing Impairment, Three (3) have Cerebral Palsy and Two (2) have Physical Table V - 1 Disability.
What is Home-based Education? DISABILITIES NUMBER
The practice of home-based education was Physical 2 initiated by the S.S.A. as a ‘pathway to Disability inclusion’. S.S.A. adopted a ‘zero rejection policy for all children’. In order to fulfill Cerebral Palsy 3 this zero rejection policy it follows a ‘multi- option model’ for children with disabilities. Hearing 4 Impairment Home-based education has been running in our country as a programme from the last 11 TOTAL 9 years as a part of the Inclusive Education Programme of the SSA. However, in 2010, Table V - 2 an amendment to the RTE act added option of home-based education for children with severe and multiple disabilities.
It was one of the most bitterly contested amendments to the RTE Act which gave children with severe and multiple disabilities the right to opt for home based education. There are strong divisions within the disability sector. While the Rajya Sabha, passed the amendments without much protest, members of the Lok Sabha were more vociferous in their opposition to this particular amendment.
The Amendment said – “Provided that a child with multiple disabilities referred to in clause (h) of section 2 of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 and a child with severe
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disability referred to in clause (o) of section 2 of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 may also have the right to opt for home-based education”
Home-based Education in Our Study
In our study conducted in the three (3) states of Delhi, Odisha and Uttar Pradesh, we came across signs of home-based education only in Odisha. Delhi and Uttar Pradesh do not have any operational home-based programs yet.
Parents of nine (9) children with disabilities participated in our study of Home-based education. All of these children are school drop-outs. They are all children with severe or multiple disabilities. See Table V – 2 for details.
Though home-based education is a choice given to parents of children with severe and multiple disabilities, i.e. the disabilities that come under the purview of the National Trust Act, our findings from Odisha show that it has been made available to children with hearing impairment and physical disabilities. This can certainly be seen as a misuse of the legal provisions. Moreover, this facility automatically applies to children who have dropped- out. The provision that home-based education can be made available only by choice of parent is totally ignored.
How it Works
While the drop-outs from Delhi and Uttar Pradesh are staying home, having nothing to do, the drop-outs in Odisha are still enrolled in the nearest school, though, they do not do anything different from their counterparts in Delhi and Uttar Pradesh.
Through our study, we have observed that, when a child with disability drops out from school in Odisha, s/he is automatically counted as a child under home-based education. Whether home-based education is a practically functioning program or a myth could not be understood as parents, the civil society and schools have different stories to tell. The schools say that it is a program, some parents say that they were told by the school about it and some parents have never heard of it though their own children are enrolled under home-based education. On the other hand, the civil society organization maintains that though home-based education was started as a program, it could not serve any real purpose except for increasing the number of children enrolled in the state.
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The Real Picture
The responsibility of teaching the children with disabilities who cannot come to school has been given to the Inclusive Education Volunteers (IE Volunteers) of Sarva Shiksha Abhiyan. However, they are pathetically understaffed, so much so that, one (1) volunteer is assigned around 200 villages. Hence, regular visits to all children with disabilities under the program become difficult and education, finally, remains an unrealised dream.
When we asked whether parents know about the system of teaching at home, six (6) parents said they were informed by the school whereas three (3) families did not have any clue about what home-based education is. None of the nine families were given any papers regarding the child’s enrolment in home-based education. However, parents of the children knew as to which school their child is enrolled in.
While exploring further, eight (8) out of nine (9) parents informed that the school provides support to meet expenses of the child though they did not give any details about the support provided.
Does it Work?
To explore whether the home-based education system even works, we asked that parents about the frequency of teachers, records maintained and the quality of teaching. The results were disheartening – all of the nine (9) participating families maintained that no one has ever come to their house to teach the child. Since no one has ever come, obviously no records were maintained and the quality of teaching does not apply.
Other Findings
It was found that the children still maintained an active relation with the school. For instance, parents of three (3) children mentioned that the school informs them if there is a health check up. Parents of all the nine children admitted that the children visit the school during the time of festivals and celebrations.
Parents of six (6) children have acknowledged that the school have told them about the prospect of regular schooling of their child in future. However, it is difficult to understand how that would be possible because there is little or no teaching-learning activity happening during the home-based education period. We found that none of our participant has received any kind of learning material from the school or the IE volunteers yet.
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Another area which the home-based education program does not support is the child’s entitlements in school. The child may be in home-based education, but is still enrolled in a school. Why s/he be discriminated? Nonetheless, such discrimination is taking place with regard to entitlements like Mid Day Meal.
However, on the brighter side, parents of three (3) out of nine (9) children informed that they have received aids and appliances from the school after their children had dropped out. The aids were very useful and significantly increased the independence level of the child.
Would the Parents Prefer Regular Schooling? All our participants opined that that they have not seen any of the activities of home- based education happening in their home. Teachers were supposed to visit their homes to teach their children but that never happened. They expressed their dissatisfaction towards the system and parents of eight (8) out of nine (9) children said that they would rather prefer their child going to school than sitting idly at home all day.
They felt that their children would be able to get to school only if the school authorities make the provisions that these children needs to sit in the class. Above all, the teachers and the helper staff of the school should be caring towards the child and ensure that s/he is learning
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C H A P T E R VI
Children Who Have Never Set Foot in School
Among our participants in the study, 21 STATES Number of Drop-out from Delhi, 22 from Uttar Pradesh and 1 Children Studied from Odisha were out of school. Delhi 21 We can see from table ( ) that most of them – 14 have intellectual disability, 13 Uttar Pradesh 22 have cerebral palsy and 9 have multiple disabilities. These are disabilities that Odisha 1 demand high support. TOTAL 44
Table V I- 1 “When Nitin was two months old, DISABILITIES TOTAL the bone of his hand broke and his hand was in plaster for months. Physical Disability 2 From then to now when he is seven (7) years old Nitin has been Cerebral Palsy 13 in plaster for broken bones of Hearing Impairment 1 hands and legs at least twelve (12) times. Every time this happens, the intellectual disability 14 parents rush to Safdurjung multiple disabilities 9 hospital, leaving their other four children with relatives. Doctors say Autism 1 that Nitin’s body lacks calcium. “We have been giving him calcium but TOTAL 44 Table V I- 2 discontinued six months ago Table V I- 2 because we don’t see any change in his condition and we cannot afford it”
Nitin never went to the Anganwadi or the school because we are scared that no one will know how to take care of him. Nitin is bright and inquisitive. He is constantly sitting in front of his house in the gali and talking to everyone who comes along.”
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“With the support of AARTH-ASTHA we have now gathered courage to go to school and tell them about Nitin’s condition and ask for admission. But will the teachers and children treat him well? Will they take care of him?”
“Rani, 12 years old has cerebral palsy. One of her hands and the parts below her waist does not support her. She lives in a slum settlement and sits in front of her house all the time. Her family’s economic condition poor. She lost her father at a very young age and lives with her mother, grandmother and siblings. Her grandmother said: “how can we send her school, we do not have even proper food to eat? Her mother works the whole day but still struggles to fulfil basic needs. There is no government school and also government school do not treat child properly”.
Rani’s movement is heavily restricted as she cannot walk; when she needs to go somewhere she uses to drag her feet with help of her hands. SPARC-INDIA provided a wheel chair but it is difficult to operate the chair in slum as the lanes are very congested.
Rani was very close to his father, her grandmother told “she was very chirpy but after her father’s death she doesn’t talk much. He used to spend time with Rani and make walking aids with bamboo for her so as to make her relatively independent. But now her mother works in other houses as domestic worker and she does not find any time for her.
There is no government school near to her neighbourhood and arranging free transport for her to go to a school in other parts of the city remained a challenge. SPARC-INDIA took the initiative of enrolling Rani at Jyoti Kiran School, run by them, making education accessible to Rani.”
Children with disabilities are one of the largest categories of out of school children throughout the world. India is no exception. n all 40 families of out of school children were interviewed in all three states. Twenty one (21) were from Delhi, twenty two (22) from Uttar Pradesh and one from Odisha. Amongst these there are twelve(12) children with cerebral palsy, thirteen (13) children with intellectual disability, seven (7) children with multiple disabilities, four(4) children with orthopaedic disability and two (2) with hearing impairment and one (1) child with Autism .
The majority of these children, more specifically children with cerebral palsy, intellectual disability and multiple disabilities are children who have high support needs. They would fall into the category of ‘severe disability’ as seen in the recent amendments of the RTE Act.
The majority of these children will need support in –
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Moving from one place to another Using their hands Activities of daily living such as eating, drinking, using the toilet, dressing and undressing
This means that they will require mobility aids, perhaps wheelchairs to move from one place to another in the school. They will require the support of another human being or adaptations to eat their midday meal, drink water, go to the toilet. They may require a different kind of support in sitting in class and may need a change of position, among other things.
Many of these children will not use spoken language as their primary means of communication; use different forms of communication such as alternative and augmentative communication or communicate through sign
A large number from our sample of 21 out of school children in Delhi are between the ages of 6 and 7. These children are at the stage where parents should be looking forward to starting them off in school.
Instead what we get is a picture of apprehension and fear and distrust.
Why Are Children Out Of School?
Some, in both Uttar Pradesh and Delhi had been refused admission on the basis of their disability as recently as the last year. After this, parents seemed have lost the will to try again.
“The organization motivated the parents to enrol the child in school but when they took the child for the admission they refused to take the child because of the severity of the child. The organization also went to the school with the parent but the school refused.” (Lalsa, Uttar Pradesh – Child with intellectual disability)
“The school refused to admit the child because she is not mentally strong.” (Mother of Priyanka with intellectual disabilities, Uttar Pradesh)
Many families had gone to schools, with some making more than one attempt for the admission of their children to school. With the RTE, fewer schools are rejecting children outright. Yet what is even more difficult for families is to deal with is the indirect rejection that takes place. Admission for some, especially those in Delhi was not refused but there was a condition. Someone from the family would have to sit with the child in school, through the school day and take responsibility for the child.
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“Subhishta’s mother is a single parent. Subhishta herself is 10 years old. She is full of life, running all the time. Subhishta has Cerebral Palsy with vision loss and intellectual impairment. She communicates through signs and some words. And when she just can’t get through, she comes and holds you and shows you what she wants. Because she communicates differently, many people do not believe what she says. Her mother reports that when she took Subhishta to the doctor for a stomach ache the doctor would not believe that Subhishta could communicate what she was going through. This is a common experience for children like Subhishta. Subhishta lives in the urban slum of Govindpuri in South Delhi. Here lanes are narrow and open drains cut across and go along the lanes. Her mother worries about her safety as she often falls into the drains if she goes out on her own. Subhishta’s mother works in a CSO and is aware of the RTE. She was keen to see her daughter in school. But when she went to the school in 2012, she was shocked at the reception she got. The teachers and principal were extremely rude and scolded the mother. “Why do you bring children like this? She cannot study here, we have no orders to admit this kind of child. If you want her to study here you will have to sit with her as long as she is in school. We will not take responsibility for her!”
As we write this report in 2013, Subishta’s mother has gone again to the school for admission. She has been now been told that she must get an written affidavit from the MLA that she is willing to sit in class with her daughter.
It is the humiliation, the loss of dignity and the devaluation of her child that has hurt Subhishta’s mother more than anything else. Will a school that talks about her child like this, ever value her and look after her she asks?
Unless there are special teachers who know how to look after her child and teach her. Unless there are all the arrangements necessary to teach her child in school Unless they treat her and her daughter well, she will not send Subhishta to school.
She feels a private school may be better.
Like Subhishta’s mother, there are many other parents who have been told that they must come to school with their child!
“She cannot walk, talk or do anything by herself. That is why she is not going to school. They asked me to sit with her in school all day. I do not have the time to sit in school the whole day.” (mother of Bhoomi, six years old with cerebral palsy, DELHI)
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Beyond Obvious Discrimination
But beyond this obvious discrimination that the school system deals out to the child and family, there are deeper reasons that all families without exception talked about..
These are to do with the education system, how it is structured and ordered and implemented in our country. How within the prevailing paradigm of education it is difficult to see how this child is to be educated.
They are also to do with how a society devalues its children and so deeply ingrained are our labels of who is educable and non educable that even families fail to recognize the right to education of their child.
“My child did not go to school because he has great difficulty in understanding. So what will he do going to school?”
“Krishna does not speak so how will he go to school? He falls a lot and there is no one to look after him in school. Someone has to sit with him. There is no arrangement for children like him in school or in the Anganwadis. I want him to study. If he goes to school then they should not make him sit but actually teach him.” (Mother of Krishna, 6yrs old with cerebral palsy)
“She does not go to school because her disability is so severe that she cannot sit on her own or go from one place to another on her own. There are no proper arrangements for children like her in schools.” (mother of Rehmat Jahan, 10 yrs, with cerebral palsy in Delhi)
A large number of families in our sample of forty children said that they would not send their child to school because of the disability of the child. They felt that their child was so severely disabled that they could not think of sending the child to school.
Linked to this was the strong feeling that the school system as it stands today will not be able to take care of their child adequately. . There was no arrangement of transport for their children. No one in the school who would care for their child, help them more, eat & study. They spoke of their fear that their child will not be looked after. They felt their children were not safe and secure in the school.
“School teachers do not know how to take care of my child.“ (parent of Riya Thapa, Delhi)
“I did not send my child to school because I was worried about who would take care of her.“ (Mother of Tarannum, child with intellectual disability from Delhi. Tarnumm never went to school and is now 14 years old.)
“There is no arrangement for children with disabilities in schools. They do not want to take care of the child.” (Grandmother of Harshita, Gungun and Manthan children with intellectual disability, Delhi)
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“My child has fits. The school is not taking responsibility for the child No one in the school will know what to do if the child gets a fit.” (Mother of Rashmi, Child with intellectual disability, Uttar Pradesh)
“I am scared that the child will fall down as she breaks her bones easily.” (Parent of kailash, from Uttar Pradesh, kailash has cerebral palsy)
Do Families want their Children to go to School?
The practice of the Sarva Shiksha Abhiyan for years has been to relegate children with high support needs into what is called ‘home based education’. This is now legally an option for the child with ‘severe and multiple disability’ under the RTE Act 2009.
Despite the apprehension, the majority of families, (38 0ut of 40) said they wanted their children to go to school. However, they wanted services in the school that would enable the participation of their child in school.
The demand for personal assistance: someone who can support the child to move from one place in the school to another, to eat their midday meal, to go to the toilet, is a universal one.
The demand for teachers (special or others) who will know how to teach their children and care for them is a universal one.
Equally strong is the demand for the provision of transportation so that children can come and go with ease.
Care and protection of children within schools is another major issue. Families want schools to be secure. They want systems to be put in place so that the child’s needs are taken care of.
To be treated with dignity and respect is as important as the provision of services. For many families, it is the acceptance or the non acceptance of their child that makes all the difference in the will to send their child to school.
It is significant that a large number of children in this sample of out of school children are children with high support needs. Although so small, a number cannot be representative of a whole country, field experience tells us that children with high support needs are as yet outside the pale of government school system. (The 2009 IMRB) study also pointed clearly to this fact.
It is unfortunate that neither the DISE nor the SSA report on the participation in education of children with Autism, Cerebral Palsy, or children with multiple disabilities, we
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have no idea how many children are entering schools, dropping out of schools or have never entered schools.
Conclusions and Recommendations
The barriers that these families have faced in the education of their children are compounded by other factors such as extreme poverty as reflected by our participants from Uttar Pradesh, migration and lack of identity resulting in a struggle for entitlements as reflected by the participants in Delhi. Single parent’s families with more than one child with disability continue to be even more vulnerable. The isolation of the child with disabilities from all arenas of schemes and that can support and include children are factors that policy makers must take cognizance of.
The disbelief that the school will be able to take care of their child should be seen in a larger context.
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C H A P T E R VII
The Way Forward..
Clear Policy Directions on the Education of Children with Disabilities
The biggest issue in the education of children with disabilities in India is the lack of policy direction on how all children with disabilities are to be educated. This stems from the dual responsibility for the education of this child between the Ministry of Social Justice and Empowerment and the Ministry of Human Resource Development. Added to this is the lack of commitment to formal and standardized systems of education for the child with disabilities.
The RTE Act unfortunately has just confused matters with the conflicting messages it gives out on the child with disabilities. By legitimizing this range of options the large education system is under no obligation to become flexible and include all.
As a result, only children who are able to fit into the system are being able to get any form of education within the system. The rest continue to languish at home.
The clearest policy direction needs to be given on what kind of educational setting will be guaranteed for the child with high support needs. How will the education system be provisioned? How will it become more flexible and absorb more and more children with disabilities? What is the status of special schools going to be under the RTE Act?
There is an urgent need for clear policy directions on the education of children with disabilities.
Review Data Collection and Use Data for Policy Directions
Our review of the DISE and SSA data shows that there is little relationship between the two. One is not supporting or enriching the other. The collection of data is incomplete with regard to all the impairment categories and we have no understanding how many children and who is dropping out of the system.
The inconsistencies and fluctuating data need to be reviewed. The big challenge in data collection of children with disabilities is in the identification of the impairment. With India’s ratification of the CRC and UNCRPD that focuses on children with disabilities, there is an urgent need to strengthen systems of data collection so that evidence based policy and program directions are possible
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A Convergence of Entitlements
The majority of families in our study, live on the edge of poverty, are migrants (as in Delhi), have little recourse of basic entitlements such as the PDS and other means of social security. The majority of families work in the unorganized sector with incomes being uncertain and variable. It is difficult for families such as these to meet the requirements of the child with disabilities without any form of support. Families with more than one child with disability, single parents and children looked after by grandparents become even more vulnerable.
Accessing any entitlement for the child is a huge challenge for the The Disability Certificate family starting from the most basic According to the 2010-11 Annual Report of of all, the disability certificate. Ministry of Social Justice and Empowerment, These vulnerabilities have to be only thirty five percent (35%) of persons with disabilities had a disability certificate till recognized and must become the February, 2010. There is no official starting point of any review on understanding of how many children with the right to free and compulsory disabilities possess this certificate. While the education of the child with child does not need the certificate to become enrolled in a school, the absence of one leads disabilities. This review needs to to a denial of other entitlements that may be mandate ways in which families important for supporting the child’s education. will be supported to send their As is clear from our study, children with child to school get an education. disabilities belonging to families that have migrated from one State to another face a It is our understanding that the particularly hard time in getting their entitlements. right to free and compulsory education can only be fulfilled if we understand the child as a whole rather than looking only at participation in education. As a result, our strategies would need to be holistic and convergent rather than separated in different silos that have no connection to each other. The education system where all children must participate must be the hub where entitlements converge.
Social security measures, habilitation and rehabilitation services and entitlements, must converge at the school so that the child can gain skills and participate in education
This is not a new thought and our school systems are already addressing issues such as high levels of mal-nutrition amongst our children through the midday meal and the health of the child through the school health program. For the child with disabilities habilitation and rehabilitation services would be an added essential requirement. All the other measures (for example, the school health program) would need to be expanded and/ or redesigned keeping the child with disabilities in mind.
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Some Good Practices
The RTE rules of some states such as kerala have given a commitment to provide comprehensive health care to all children, maintain health cards, for each child till the completion of elementary education. The state rules also commit that the registration of births will be ensured by the local authority. Such commitments could be extremely enabling for the child with disabilities and should be transferred to different states.
We do have a good practice in the form of the convergence between the SSA and the Ministry of Social Justice and Empowerment for the ADIP scheme. Through this convergence aids and appliances are provided to children with disability through the school system and the child does not have to go to hospitals or non government organizations to get aids and appliances.
The terms of reference of this scheme and the assistive devices it enables the child to use have been widened over the years. For example,
An audit of this scheme and how it can be widened to support the child with disabilities in education needs to be done urgently.
An audit of other disability specific schemes such as those run by the National Trust for health insurance (Niramaya Health Insurance Scheme), support to children in education etc could be done to see how they can converge with existing education system and support children to get educated.
Inclusion in Schemes for all Children
At a broader level, inclusion of children with disabilities in important and universal schemes such as the ICDS (which supports the child in the early year), is important if children are going to be identified and supported to enter schools. At the moment, there is a gross exclusion of the child with disabilities in these large schemes for all children. Specialized early intervention programs are scant and rare in the country. Therefore the child does not get the benefit of support in early years. This clearly presents a big barrier to the child’s access to and retention in education.
Activating and Monitoring Existing Entitlements
Through the RTE and even before, children with disabilities have had certain entitlements which are important for access to education.
The provision of transport for example, is a major one.
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The rules of the RTE support the provision of transport for the child with disabilities. This is an extremely essential entitlement and must be activated and monitored by local authorities, the SCPCR, and the NCPCR. Unfortunately, despite the provision of transport being an entitlement since the 1995 Persons With Disabilities Act, this is not a reality for most children with disabilities in India.
Barrier Free Environments within Education
The concept and the steps needed to make the environmental barriers free need to be outlined and clarified in the rules of the RTE. In its absence, our only indicator is the presence of a ramp and rail. Instead, as our study shows, the participation of children with disabilities in all activities, their safety and security and a non- discriminatory atmosphere are equally important elements of this term. These need to be thought of and clearly delineated in our policy and rules of the RTE.
Although the notion of quality education is implicit in many sections of the RTE, there seems to be a huge knowledge gap within the education system about –
1. Perspectives on disabilities and the rights of the child with disabilities 2. How to include the child with disabilities in all aspects of school life 3. How to provide reasonable accommodation and support to the child 4. Inclusive pedagogy
This gap in knowledge and understanding persists despite there being a separate Inclusive Education (IE) component in the Sarva Shiksha Abhiyan for at least a decade now.
One of the reasons for this is that it seems that knowledge on the teaching of children with different impairments, generating reasonable accommodation and support, adapting curriculums and creating subjects and fields of knowledge that will reach out to all children including children with disabilities is not generated within the education system or in the context of mainstream education system. The education of children with disabilities continues to be studied and strategies continue to be built in a vacuum. As in the earlier paradigm, the impairment of the child becomes paramount in our strategies for the child. We forget where the child comes from, their family situation, the terrain where they live and many other factors social economic, cultural and political that affects the education of the child.
We recommend that there be a knowledge hub created within the Ministry of Human Resource Development (MHRD) that sees the child in her social context and then researches inclusive pedagogy be created. Perhaps a department of inclusive education rather than an IE component in a scheme is warranted for.
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Review Requirements of Professionals and Personnel for Education and Rehabilitation
With the ratification of the UNCRPD India has committed itself to the inclusion of children and persons with disabilities in all aspects of development and society. However, as yet our schemes and the training of rehabilitation workers and special educators remain in the older paradigm.
As more and more children with disabilities enter schools, the requirement of personal assistance has to be met and resourced. What will this cadre of personnel do? Who will train them? These questions must to be addressed squarely. The constant worry of the parent of not having personnel who can look after the needs of their child and assist their child has to be addressed.
Alongside this a review of training of special educators is essential. At the moment we have special educators who are trained to work with different impairment groups. Even though today, they are to be taken on as the cadre as general teachers, the truth is that a teacher trained to work only with visually impaired children will not know what to do with a hearing impaired child. The question of specialization and at what level we need specialized knowledge needs to be addressed.
Physio and occupational therapists, speech therapists, clinical psychologists and other professional services are essential for the child with disabilities. Yet these professionals are less and less available for the child with disabilities living in-rural areas or the child who cannot pay for these services.
A new cadre of rehabilitation workers who will be able to work at the community level needs to be thought of.
We need to be able to learn from the many examples of community based rehabilitation projects with huge levels of knowledge and experience of supporting children and persons with disabilities at the level of the community in this country. All three organizations participating in this study work in communities. Throughout the study we see how the community worker is able to support the family with, information, basic rehabilitation services and support.
Recently,( Nov 2012) India hosted the first World Congress on Community based rehabilitation. Yet at the moment we do not have a policy that encourages community based rehabilitation in our country.
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Building Partnerships with Parents
There seems to be a great distance between the parents and the school. All through our study, parents of children in school and out of it have felt strongly the lack of knowledge of teachers on how to look after and teach children with disabilities. They believe that they do not have a say in the education of their children. They have felt strongly the discrimination and often rejection of their children from the education system. While some of this is to do with our attitudes towards disability, it is also true that there is little partnering with parents within the system. Most parents in our study had not discussed the specific requirements of their child with the teachers. Teachers and never, discussed learning strategies or guided the parent or wanted to learn more about the child from the parent. There is a need to build partnerships with parents, inform them and often learn from them. For the child with disabilities this becomes even more important. Parents can give valuable information to the teacher on how the child communicates, the barriers she faces and how to help her learn. The school system in turn will need to prepare families to support their child’s learning in different ways. Systems need to be put into place to do this.
Assessment of Children
Multidisciplinary assessments are extremely important if the child with disabilities is to participate fully in education. Children are unlikely to have been assessed as they enter schools. Parents would have taken them to hospitals where it is unlikely that they would have received detailed information about their child’s impairment. For the large number of families that are not connected to non government organizations the school would be the first point of contact for information and support. Schools would have to be responsible for this assessment which would also involve the parents.
Participating in all Aspects of School Life
Children with disabilities have a right to participate in all aspects of school life. Systems of supports, ideas of how to adapt activities need not come from outside the school. Lots can be done with teachers and students putting their heads together. Such systems could be activated in schools or projects undertaken to research and suggest ideas and activities suited to the varied situations in which children in India get educated
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Children with High Support Needs
The RTE entitles all children, including children with severe disabilities to free and compulsory education. Even though it gives the parent of the child with severe and multiple disability the right to opt for home based education, it is still a choice that the parent makes. This means that all schools must still be prepared to take on and educate children with severe and multiple disabilities. In our study parent after parent spoke of their desire for their child to go to school.
However, our study and field experience shows that this is one area where there is no preparedness within the system, no debate about provisioning and no research or strategies for inclusion.
It seems from our study that the moment the inclusion of a child challenges the system to become flexible, change processes and create different kinds of provisioning using the same standards as for all, the system closes in and rejects the child.
Monitoring Discrimination
One of the strong points of the RTE Act is that it recognizes the existence of discrimination and explicitly puts forth strong clauses against it. Active discrimination and humiliation are often deciding factors in a child’s access to education and should not be underrated as causes of dropout or lack of performance.
As we see from our study, children with disabilities and their families face different kinds of discrimination, much of it direct and some of it indirect. Discrimination on the basis of disability is common in our school system. Unfortunately, it continues to be internalized by families and often children as their fault rather than a lack of flexibility of the system. For example, the lack of accommodation, lack of participation of the child in all aspects of school life and a lack of a plan to do this must be seen as discrimination. In our understanding today, the lack of knowledge in the system of how to support this child and educate the child must be seen as a form of discrimination.
It is important that there be detailed studies on the shades of discrimination that children with disabilities face and action plans drawn to combat it. Only then can the RTE commitment to non-discrimination be ensured.
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References
1. DISE Analytical Tables (Please see www.dise.in) 2. The Right of Children to Free and Compulsory Education Act, 2009 3. The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 4. The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities” Act, 1999 5. Annual Reports of Ministry of Social Justice and Empowerment (Please see socialjustice.nic.in)
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We can be reached at
AARTH-ASTHA Address: AARTH-ASTHA, Basti Bikas Kendra, Bal Mukund Khand, Giri Nagar, Kalkaji, New Delhi – 110019 (Behind Acharya Narendra Dev College)
Telephone & Email: Administration: 011 – 26449026/ [email protected] Programs: 011-26466251, 26227720/ [email protected], [email protected] ABILINE – National Disability Helpline - 1800116800 (Toll-Free)/ 011-26466250/ [email protected]
Timings: Monday to Friday | 8:30 am to 4:30 pm
Website: www.asthaindia.in
AAINA Address: Plot-70/3530 (Ground floor), Behind Hotel Mayfair, Bhubaneswar- 751013, Odisha,
Telephone & Email: (0674) 2360630,2360631/ [email protected] Website: www.aaina.org.in
SPARC-INDIA Address: SPARC India, 10, Satyalok Colony, Mohibullapur, Madiaon, Sitapur Road, Lucknow- 226 020, Uttar Pradesh,
Telephone & Email: 0522-2730753, 9839171676, 8795828720/ [email protected], [email protected], [email protected]
Fax: +91 522 2743940 Website: www.sparcindialko.org
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THIRD ANNUAL REPORT ON STATUS OF CHILDREN WITH DISABILITIES UNDER THE RIGHT TO EDUCATION ACT 2012-13
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