Growth of Disability & Rehabilitation sector: A step to build an Inclusive society by Dr. Sachin Gupta

The growth of the Disability & Rehabilitation sector is very important for establishing an Equitable and Inclusive society in the country. Persons with Disabilities need to be truly empowered for making a difference in society. Apart from preventive care, medical care at the time of birth including pre and post care to the child and mother is very essential which forms the base of the health of children with disability. Early Intervention techniques are very essential for learning by all parents. It is mostly seen that parents tend to study about the information pertaining to Children with Disabilities only once they have one. It's often too late by then. Important dos and don'ts, resources for early action and detection among others are mostly missed by the parents/ guardians.

Parents tend to see disability initially as only a phase and tend to wait for it to pass. Waiting for the situation to become normal becomes the mantra. However, it is when things get out of hand and crucial time is wasted; it is then that parents reach out to Doctors who in turn ask them to reach out to professionals in the field of Disability Rehabilitation. So, the lesson here is don't start looking for Disability management techniques when you are already delayed and much time is lost. Each child should while learning the reproduction chapter in biology class in their school education should be explained 'how and why' of disability, Thalassemia is again one such disability which if children are educated about; we can minimize its occurrence with educated decision making at the time of marriage.

The Government has suggested 'BERA' testing for assessment of hearing in the first six months of birth for all children. Government also suggests a vaccination plan to maintain lifelong health and develop immunities . However, it is seen that even some of the most educated parents do not take it seriously and only in adulthood, they realize its long term impact. Be it genetic counselling, pregnancy counselling, motherhood programme for the prospective mothers; the family usually puts the onus completely on the mother. Due to issues such as poverty, lack of education, lack of health infrastructure, appropriate diet, lack of family planning measures & care during pregnancy etc; our society is facing a very high rate of infant mortalities today.

Marriage and child reproduction is at the centre of any growing civilisation. To plan a healthy and robust society; parents should take the process of child reproduction very seriously. How many children a mother can reproduce in a healthy manner should be seriously thought of. Determinants like family income, age of parents, availability of time/ resources should be clearly chalked out before planning any marriage and bearing children. Marriage counselling and pregnancy tele-helplines should be established to counsel the parents and plan the future of their children. If we are able to address the needs of the mother & child from conception period; we will not only lessen the burden on health & other infrastructure; but also create healthy citizens who shall be able to contribute towards the GDP of the nation in a more productive manner. Before moving on to the next point, it is very important to understand the pain and effort that a mother has to undertake to bear a child. So the terminologies of taking another chance or going for another pregnancy may result in similar outcomes if done without due consultation and care.

From the Disability Rehabilitation perspective; an ecosystem needs to be fully developed by the Government to facilitate all-round development of the persons with disabilities and without disabilities. Starting from Education; all children in school should be educated about Disability and ways to prevent disability before the completion of their secondary education. The efforts being made by the Government, initiatives by the NGOs and other semi-Government organizations should be made known to all children. Different schemes, benefits, concessions for the Persons with Disabilities should be circulated far and wide. All people should be apprised that they have healthy children because of proper care and attention given by them to various issues. If they or their dependents do not continue to give proper care and attention; there could be a chance that the child to be born may have some issues. Healthy mothers having high Immunity levels and who take due care of themselves are able to give birth to children who are healthy. Regular medical check-ups, proper family support systems and a rich diet with appropriate lifestyles are required during pregnancy. Birth and growth of a child is one of the most complex activities in the human life cycle. Often we tend to play down its importance and take things for granted.

Post birth of children with disabilities; each day is important. Starting from early identification; early intervention techniques need to be put fully in place. For that we need professionals in every health care centre to provide counselling of parents to first facilitate their acceptance, information about resources available to them, procedures to be followed depending on disabilities etc.. The most common mistake made by parents at this stage is waiting for a miracle to happen. Parents often tend to believe that things will be back to normal after sometime and that their child is just slow in growth. One must realize that delayed crying at the time of birth, delay in crawling, walking, hearing, talking etc. are all serious issues which must be monitored very closely.

Timely intervention by professionals is the foremost activity that any parent should resort to on being informed that their child has some disabilities. Delayed action at this stage also may result in very dire consequences. For example, Cochlear implant which is being provided by the Government free of cost to children below the age of six years helps in restoring hearing and speech to quite an extent. So, this way we are able to even reverse disability in a very significant manner. Therapeutic intervention like Occupational therapy, physiotherapy, speech therapy are very important cornerstones in any child with disabilities' growth story. During the initial years; the child's body is flexible and can be made adaptive with early intervention. Once the body of the child becomes rigid and most of the development has already taken place; then it takes a lot of time for the intervention expert to fetch desired results.

One major falsy that parents believe is that Intellectual disability is an illness. This is absolutely false. Intellectual Disability is a condition and the IQ of any child cannot be changed. So the condition stays for life. The effort of the Rehab professional is to empower the person with disability to live his/her life more independently and in a fuller manner. So, parents who waste their precious time and money in running after quacks and individuals who promise a miracle for their child should be totally avoided. The effort of every parent should be to make their family, their home, their neighbourhood truly inclusive so that the child with disability can live in a fuller manner with self-respect, dignity and in an independent manner.

Government of the day stands committed to the philosophy of Equity and Full Inclusion. Being a signatory to the UN Convention on Rights of Persons with Disabilities (UNCRPD) of 2006; Indian parliament has enacted the Rights of Persons with Disabilities Act 2016 after repealing the PWD Act of 1995. This speaks volumes about the intentions of the Government. A separate Department of Empowerment of Persons with Disabilities (DEPWD) has been carved out under the Ministry of Social Justice & Empowerment, Government of India. Several National Institutes specializing in different disabilities have been established apart from the three major organizations viz: Rehabilitation Council of India (RCI), National Trust (NT) and Office of Chief Commissioner for Persons with Disabilities (CCPD).

The objectives of RCI is to mainly train & prepare human resources for the Persons with Disabilities under 16 categories like Special Educators, P & O, Clinical/ Rehab Psychologists, Rehab Workers, Audiologists & Speech Language Pathologists, Community based Rehabilitation professionals, Rehabilitation Social Workers, Speech & Hearing Technicians, Multipurpose therapists, practitioners, Vocational Counsellors among others.

The National Trust majorly has schemes for persons with Intellectual Disability, Cerebral Palsy, Autism & Multiple disability. The objectives of the National Trust in particular are to enable and empower persons with disability to live as independently and as fully as possible within and as close to their community as possible; to facilitate the realization of equal opportunities, protection of rights and full participation of persons with disability; to extend support to its registered organizations to provide need based services; and to evolve procedures for appointments of guardians and trustees for persons with disabilities.

The office of the Chief Commissioner for Persons with Disabilities deals with the issues/ cases concerning the rights and facilities made available to persons with disabilities or non-compliance of law, rules, bye-laws, regulations, etc., issued by the Government of India for the welfare and protection of rights of persons with disabilities.

Having written about the three major organizations established under the DEPWD, MSJE; the ecosystem for the persons with disabilities is far from complete. As Education is the backbone of any society; we will first discuss the Education sector. With no formal guidelines for special schools, no guidelines for learning from home; the dream of making India as fully literate can never be realized. The Ministry of Education is working on the agendas of Inclusive Education (i.e. teaching of all children with and without disabilities in the same classroom). This agenda completely overlooks several important aspects related to children with disabilities. Also, the Ministry of Education is totally dependent on RCI , DEPWD , MSJE for its manpower requirements for education of children with disabilities. The irony is that the children with disabilities are taken care of by DEPWD, MSJE and the manpower training of Special Educators is done by RCI, DEPWD, MSJE; but the job of educating has been entrusted to the Ministry of Education. This shift of responsibility does not in any way benefit the children with disabilities. For all the education needs of cwsn, the DEPWD, MSJE becomes dependent on MOE, GOI which in turn takes on the DEPWD for slow pace in training of manpower (Special Educators) and also the pre-condition that the children have to come to inclusive classrooms for education.

Court case orders and strict rulings have highlighted the lack of motivation of schools to appoint Special Educators. Accessibility of schools, curriculum adaptations, examination & assessment needs are far from being met. Classrooms are already over-crowded. Children with Deaf-blindness have a teacher ratio of almost one student to one teacher. Children with Intellectual disability have a student ratio of almost one teacher to eight / ten ratio. The MOE through CBSE schools is planning to have one special educator per school irrespective of the number of disability the children are in. With only a handful of schools doing some good work; inclusive education for all the twenty one disabilities is still a long call. There is no separate board of the Schools for Children with Disabilities. The school boards like CBSE only provide some extra time for the children to complete their answer scripts in examination apart from the facility of scribe where ever applied for. Modern day flexible assessment & examination through sign language, braille, on-demand examination, telephone exams, verbal examination, computer based examination etc. are the need of the hour. However, the age-old tradition of paper pen examination continues to dominate our examination system and so the same is also applied for learners with disabilities. However, the most strange part is that when special educators are required to train the children with disabilities; why aren't they allowed to frame the examination paper of CBSE for children with disabilities. The basic rule of teaching and examination is being flouted and teachers teaching the cwsn are not the ones testing or examining the cwsn. Hence, the class ten and class twelve board examination have become the major roadblocks for children with disabilities to clear their school education. Some may argue that all children should give the same examination if they are under the same board. Well, in the first place the children with disabilities will be happy with their own school board. When today we have school boards for urdu, sanskrit, madrasas etc. then why cannot we have a school board for the persons with disabilities who roughly account for nearly eight percent of today's population. In comparison; Bihar School Board, Rajasthan School Board, UP School Board, NIOS etc are independent school boards. So shall be the case with the cwsn School Board. The absence of a school board for them is resulting in the cwsn being subjugated to a system which is not meeting their requirements.

If we were to move to higher education, there is a reservation of five percent seats for persons with disabilities as per the RPWD Act. However, the Class twelve board exam is acting like a "lakshman rekha' not allowing the children with disabilities to pass this class ten and twelve barrier. This has resulted in less than one lakh candidates only enrolled in all the universities higher education programmes put together as per the AISHE report of 20-21. So the Gross Enrollment ratio is dismally low for the PWDs. There are hardly any Universities in the country which can boast of courses and education primarily meant for the PWDs. Hardly there are any applicants for the 200 student scholarships for Research each year advertised by University Grants Commission. The reason is written on the wall. We just have to step out of our mindsets and make decisions which are very important for the welfare of the PWDS. National Education Policy (NEP 2020) was drafted by the MOE for education of children without disabilities. There was hardly any consultation of the MOE with the DEPWD (either in the formation or in implementation of the NEP 2020).

Education is a part of the Rehabilitation process. DEPWD should draft its own National Rehabilitation Policy (NRP). This means fulfilling the education needs of PWDs through its own schools (special or otherwise) which are fully accessible & flexible, have their own syllabus / IEPs for human development (and not just syllabus to become doctors / engineers etc), own Universities, own Vocational & Skill training centres for the PWDs as per the job roles identified / reserved for PWDs by the Government. Just as the Government has gone out of the way to uplift the SC/ST & OBCs; its time the heart of the nation beats for the Persons with Disabilities as well.

It is quite a contrast that the "Relief and rehabilitation of persons displaced from their original place of residence by reason of the setting up of the Dominions of India and Pakistan" has been kept in concurrent list as per the seventh schedule of the Indian Constitution; whereas the "Relief of Disabled" has been kept in the State List. Social Planning, Social Security and Social Insurance has again been kept in the Concurrent list. This non-clarity has also led to further ambiguity for the Persons with Disabilities. It's time that we all rise to the occasion in India's presidency year of G-20 and make the desired changes for a better future for our Divyang brothers and sisters.

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