Thinking care

by V.R.Kulkarni - National Coordinator - CBR Network

Disability Statistics

In India no serious attempts have been made to collect data on disability. Even the latest National Sample Survey made in 1991, has very limited application as it did not cover all disabilities and the definition adopted was not broad enough to furnish a true picture of the Disability Scenario in the country. Some states like Karnataka, Haryana, Gujarat and Madhya Pradesh have attempted to have some information on disability. But these attempts did not yield desired results as they did not have the required logistic supports in the form of well trained personnel, administrative back up for a survey of this kind. Only the survey conducted by the Govt. of Karnataka was more systematic and also more comprehensive. But even this survey ultimately proved useless as there was gross under reporting in respect of certain disabilities like hearing disability, mental retardation, low vision, etc. It is learnt that Census Commissioner appointed by Govt. of India has rejected the proposal to include disability census along with the general census in the year 2001. This attitude reflects lack of commitment to the spirit of the UN Standard Rules and total ignorance about the importance of having basic data of disability.

Prevention of Disability

In the last 3-4 decades no doubt some initiatives have been taken for prevention of disabilities. The Govt. launched some programs in this direction. The immunization program, supply of Vitamin A, the National program for control of blindness, MDT Program, mother and child health program and ICDS are the examples of such preventive action. But prevention of disability is not in sharp focus under any of these activities. They are considered more as health programs rather than measures for prevention of disability. Still we will have to admit that a lot of good has really been under these programs. Now action has to be taken to improve quality of the services. The primary health care consolidated the gains of these programs and also improved quality of services. The primary health care services are still in very bad shape in terms of coverage and quality. The importance of basic health service can hardly be exaggerated in countries like India where even today more than 70% people reside in villages. At this point it is imperative to mention that there is no well defined national policy of prevention of disabilities.

As regards early detection and intervention, so far no systematic and serious attempt has been made though they are equally important. A large number of children with disabilities are not identified at all till they become adults. The consequences of this are quite obvious. Lack of early intervention increases the severity of disability on the one hand and on the other hand the costs of rehabilitation become enormous. Non-identification of early childhood disability will lead to under reporting of persons with disabilities.

Equalization of Opportunities

A comprehensive legislation called the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995, was passed by the Indian Parliament and the Act came into force from 7th February, 1996. This legislation has given rise to a lot of hope among the persons with disabilities as it contains provisions assuring equal opportunities in all walks of life, including education and employment. It guarantees non-discrimination and removal of barriers, both physical and psychological and ensures certain affirmative action for the full inclusion of them. The Act contemplates setting up of Coordination Committees with a view to regulate the activities of Govt. departments dealing with the persons with disabilities so that proper direction could be given and concerted efforts are made for the welfare of this section of the society which has been very badly marginalized.

No legislation could do wonders without a strong political will and administrative support to implement the Act in letter and spirit. In past four years after the passing of this legislation not much has been done. There was inordinate delay in constituting coordination committees and appointment of the commissioners. The Rules that are required to enforce the Act were framed after much delay. The administrative action to provide free primary education to the children with disabilities, which is a mandatory provision of the Act, is tardy and direction-less. We notice same kind of apathy of part of govt. administration in respect of employment, transport facilities, removal of physical barriers in public buildings, vocational training, etc. Besides the tardy enforcement the Act itself contains glaring mistakes omissions. Though UN Standard Rules are the spirit behind this Act, many important provisions have been very much diluted for no apparent reason.

The rehabilitation services are mostly available only in urban areas and could be accessed by a few. In rural places no services are available and no rehab professionals are found. In India even today NGOs are the providers of rehab services. We see most of the NGOs working in urban setting. What is really surprising is that no strategy to the persons living in remote villages and hilly areas and tribal colonies has been devised. By now, all over the world the importance of CBR strategy is being recognized. But the policy of the Govt. of India as reflected in the Act and also in other Govt. orders we notice conspicuous absence of rural bias and reference to community based rehab strategy. As a result the govt. of India appears to be in the dark in so far as the question of reaching the unreached is concerned. With pain and dismay one must recognize the fact that even the NGO members of the National Coordination Committee have failed to influence the policies of the government in this regard. The reasons for this are anybody’s guess.

Education

It is heartening to note that the Persons with Disabilities Act, in section 26, provides for free and compulsory education of all children with disabilities up to the age of 18 years in appropriate environment. The term appropriate environment could mean Inclusive Education in respect of the majority of the disabled children and institutional support of Special Schools only in the case of severely disabled. The U N Standard Rules very specifically stipulates that Inclusive Education through main stream schools should provide education and there should not be any discrimination between the disabled and non-disabled children. The regular school system alone should cater to the educational needs of all children, including the children with special education needs. This basic spirit has been callously overlooked in the Act. This amounts to total neglect of the Children with special needs ad also perpetuating age old, but now discarded concept of special education. Further it could be seen that as per this provision of law the authorities of the education department are not responsible for the education of the children with disabilities. In other words, mainstream schools are not accessible to these children. The children with special needs continue to depend on special schools and those in villages will be deprived of education for many more years to come. Needless to state that the Salamanca Declaration, for which India was also a signatory has been very conveniently overlooked.

Education is so vital for human development that its importance can hardly be exaggerated. Now education has been recognized as a fundamental right and it has been asserted by the provision under section 26 of the Act. But the same provision has been violated by the authority of the State. It is true that under the constitution of India have to take initiative and provide education to all including the children with special needs. The international authorities like WHO may have to take this matter with government of India. Otherwise the disabled children, particularly those in villages will be deprived of their right to education.

Employment

The situation in regard to employment is no different from that of education. Quota measure or the reservation policy is being implemented in haphazard manner, there are no reviews and accountability. The jobs that could be managed by the people with different kinds of disabilities are not identified and timely action is not taken to notify them. The prevailing attitude of apathy and insensitivity continue unabated as most of the bureaucrats and politicians have colossal ignorance about the potentialities of the disabled people and they fail to appreciate their needs. The status of the woman with disabilities is much worse.

National Coordination Committees On Disability

By now all state governments and the government of India have set up Coordination committees. However, they have failed to make any remarkable impact on policies of the respective governments. It may be argued that four year period is not really long enough to assess the efficacy of the coordination committees. But it is equally true that a majority of these committees do not meet regularly and deliberate in a very casual manner. The fact that the Government of India constituted a committee to propose amendments to the Act without consulting the Central Coordination Committee goes to show that the committee has failed to assert its existence. Perhaps this statement holds good in respect of state coordination committees also. If this trend continues in the future also the persons with disability will be disillusioned very soon and this new experiment of combining bureaucracy and non-officials in one fold will become a flop show. In order to avoid such a consequence the NGO members should rise to the occasion and exhibit their real commitment to the cause of disability.

Prospects In Twenty First Century

Despite a number of international conventions on disability and policy declarations and the Asian and Pacific Decade of Disabled Persons, the situation remains the same. This may sound very pessimistic and govt. may dispute this statement. Even today hardly 3-4 percent of disabled get rehabilitation services. The vast majority living in rural areas are denied of all services. We hardly notice any policy change to cover rural people. The Community Based Rehabilitation strategy still takes a back seat. Even some NGOs running special schools in posh urban areas feel that their very existence might become irrelevant if community based strategy is accepted. Such wrong notions are partly due to ignorance and partly because of vested interests.

A sound national policy on disability to reach the hitherto unreached disabled people in villages and a firm commitment for inclusion will cause a sea change in bleak situation. Community Based Rehabilitation is the only option available for developing countries which has wide coverage and at same time cost effective. Any delay in adopting this strategy would be a very costly mistake. All governments, NGOs, advocacy groups, people with disabilities should realize this and act decisively.

The Agenda papers as presented now contain a large number of platitudes and pious hopes as reported by government sources. But the hard realities are otherwise and bitter to taste. The international conference of this scale and magnitude should not cover up the facts by wishful thinking.