Volume 9 Issue 11 - August 15, 2012

Early childhood intervention: Does it exist in India?

The Disability Act of 1995 has a provision on prevention of disability and early intervention. The National Trust Act for the Welfare of People with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities is supposed to run schemes on early intervention. The Rehabilitation Council of India (R.C.I.) is supposed to create the human resources to make this possible. Yet, only a fortunate few of the estimated 35 million children with disabilities in the country have access to any kind of early intervention, if at all. Dorodi Sharma of D.N.I.S. who attended the 1st Asia – Pacific Early Childhood Intervention Conference in Perth, Australia writes why India needs to wake up to the discourse.

The 1st Asia-Pacific Early Childhood Intervention Conference was organised by Early Childhood Intervention Australia in Perth from August 9 to 11. The Conference brought together experts, early childhood intervention practitioners, parents, educationists, etc. from different parts of Asia- Pacific. The various keynote addresses underlined the huge body of research and work that is happening in North America, the Nordic countries and other developed regions of the world.

Dr. Peter Rosenbaum, co-founder of CanChild Centre for Childhood, McMaster University, Canada spoke about the 7 Fs (Function, Family, Fitness, Fun, Friends and Future), that should inform our thinking and activities in all our work with young people with disabilities and their families. Dr. M‘Lisa Shelden, Director of Family, Infant and Preschool Programme in Morganton, North Carolina spoke on ‘Coaching: An Evidence Based Strategy for Promoting Parent Participation’. Dr. Robin McWilliam, the new Siskin Endowed Chair in Early Childhood Intervention & Development at the University of North Carolina at Chapel Hill, spoke about strategies for engagement at homes, schools and community routines and the role of professionals and caregivers. Dr. Mats Grunland, professor in Psychology and Disability Research, Jönköping University, Sweden presented the findings of a research study on the participation in family activities of children with profound multiple disabilities.

The various break out sessions and workshops also highlighted the work that is happening in the area of early childhood intervention. Various services available to parents and families and children with disabilities were also showcased.

As one looked at all the early intervention services that India is providing through its health and child services, it becomes obvious that not only are these non-existent in India, even the discourse has not yet started! This, despite the fact that 90 percent and more of the organisations claiming to work in the area of disability are either running special schools or providing rehabilitation services to children with disabilities.

India is home to 70-100 million people with disabilities, of which 25-35 million are children. India was the 7th country in the world to have ratified the Convention on the Rights of Persons with Disabilities (C.R.P.D.). Yet, the fundamental requirement for mainstreaming persons with disabilities is missing when it comes to implementing the Convention. Early identification and providing early intervention services that make a child with disability acquainted with her/his disability are just not there.

The Disability Act of 1995 has a provision on prevention of disability and early intervention. The National Trust Act for the Welfare of People with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities is supposed to run schemes on early intervention. The Rehabilitation Council of India (R.C.I.) is supposed to create the human resources to make this possible. The laws are there but nothing on the ground.

Javed Abidi, Chairperson of Disabled People’s International (D.P.I.) and Honorary Director of National Centre for Promotion of Employment for Disabled People (N.C.P.E.D.P.) highlighted these missing links in his keynote presentation at the Conference.

Currently, there are some 419 institutes that are recognised by R.C.I. to run rehabilitation courses. More than two-third of them are N.G.O.s, special schools or organisations working in the field of disability. The total number of registered professionals in India is approximately 35,000 or roughly, 1 professional to every 700 to 1000 children with disabilities. This includes all professionals along with special educators!

In the absence of trained personnel, people who do not have the required knowledge base become ‘early intervention practitioners’ after attending a few workshops here and there or with a few weeks of apprenticeship.

Abidi said that the first question that we need to ask ourselves is where are the early intervention practitioners? And where are they located? Of these 35,000, majority would be based in the cities and bigger towns. So, whom does the average Indian parent of a child with disability go to? Will they be even aware of something called ‘early intervention’ that could help their child to be able to become independent, to go to school and become friends with her/his disability?

Another issue of concern that his presentation highlighted was the quality of the professionals. Most courses are administered by small N.G.O.s. What are the monitoring mechanisms to ensure that the professionals are well trained and that none of them end up doing more harm than good?

Another question raised was who is employing these professionals? Most of them are employed by N.G.O.s and are very poorly paid. Poor pay will attract poor talent.

However, the most important issue Abidi emphasised that the Indian disability sector is not talking about enough, or not at all, is whose responsibility is it to provide early intervention services? The non-profit sector, the disability sector, the N.G.O.s, the special schools that do not have the resources nor the reach to be able to provide early intervention services to every child that needs it. Unfortunately, other than those cursory mentions in the disability laws, there are no policies that provide and regulate these early intervention services. There is no research going on or being supported in this area. The State is more concerned with prevention of disability.

Half or more of the 35 million children with disabilities in the country will either not have any early intervention services or, when they do they will not be adequate and of good quality, Abidi said. Yet, we do not hear enough of the issue and are not doing enough to get such services in place.

Abidi also drew parallel between early intervention and the implementation of C.R.P.D and Convention on Rights of the Child (C.R.C.). Early intervention services are an imperative to implementation of C.R.P.D., he said. The Committee on the Rights of the Child has also recognised the importance of early intervention. In the Committee’s General Comment number 9 on the rights of children with disabilities, it recommends that, “States parties establish systems of early identification and early intervention as part of their health services, together with birth registration and procedures for following the progress of children identified with disabilities at an early age. Services should be both community and home-based, and easy to access. Furthermore, links should be established between early intervention services, pre-schools and schools to facilitate the smooth transition of the child.”

It also says that “Early identification requires high awareness among health professionals, parents, teachers as well as other professionals working with children.”

Despite the fact that India has ratified both C.R.C. and C.R.P.D., the Ministries which are supposed to implement these two Conventions do not work in tandem. Professionals trained to impart early childhood services be it health care, recreation, education, etc. are not made aware of disability and the importance of early identification and intervention.

C.S.O.s, N.G.O.s working in the area of child rights hardly ever talk of disability, in general and early intervention, in particular. The disability sector is not blameless either. There have been no efforts to build alliances with child rights organisations.

Abidi emphasised that the disability sector in India needs to realise the importance of the issue and work towards ensuring that adequate human resource is trained and developed. Another urgent need is to integrate early childhood intervention services in all existing health care and child services, be it education, recreation or any other.

Generations have suffered due to non-existent or bad services in the name of rehabilitation. It is the responsibility of all those who are supposedly working towards empowerment of people with disabilities to ensure that at least the coming generations get a better deal. And the time to act on this is now.

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