To bring about coherence in the disability sector, we need consensus around the goals to be achieved. This Framework – which is a tool for aligning efforts of institutions in the field of disability – will help us achieve that support, feels Sarabjit A. Singh, Member of the Principal Bench of the Central Administrative Tribunal, and a wheelchair user.
What is a Disability Assistive Framework (D.A.F.)? It is an institutional arrangement for aligning the efforts of various actors in the field of disability for achieving an agreed vision, within an agreed time frame.
Disability issues are multi-sectorial. They thus need a cross-cutting approach for aligning efforts and ensuring that disability requirements become embedded during project conceptualisation and are not taken as add-ons to a sanctioned project.
India, in several respects has a well developed policy and institutional framework and an active NGO sub-sector for people with disabilities. Yet, progress in bringing disabled people as equal members of society, so that they can play an equal part in the life of the community, remains a distant dream.
A problematic area is the inability to have an uncontested estimate of the number of disabled people in India. No doubt, part of the problem lies in the definition of disability used in official surveys and, in particular, the technical difficulties of obtaining reliable information because of societal/household attitudes that make persons reluctant to identify disability in the household. Despite these difficulties, periodic surveys made by the National Sample Survey Organisation (N.S.S.) and results of the last census of 2001 have produced data which places the number of disabled people from 40 million to 90 million people. The lower end of the range, that is, 40 million, is consistent with estimates of the Planning Commission of 4%; the upper range is based on the N.S.S. report that used a broader definition of disability. The W.H.O. [World Health Organisation] estimates that about 7% to 10% of any population is disabled. By comparing this with data from developing countries such as China, Egypt, Sri Lanka and Cambodia, a range of about 4% to 9% of the Indian population being disabled people is not unreasonable. The number of persons is thus very large. This number would swell if old and frail people with some disability are included. Therefore, the need of bringing disabled people into the mainstream assumes urgency.
Estimates show that over 8% of the rural households and 6% of urban households had a seriously disabled member and a large percentage of these household are very poor. Persons with disability are a heterogeneous group of rural/urban, poor/rich, men/women; however, a reliable profile is not currently available. There is a two-way relationship between poverty and disability: disabled persons are more likely to be poor and the poor are more likely to become disabled. This has a severe economic impact on the families who have to look after a [person with disability]. A recent village-level study in Tamil Nadu shows that 9% of the rural adult population was affected by disability and it affected 8% of the total income of the area. Based on this study, the authors concluded that losses due to incapacity to be productive are two to three times in comparison to the estimated loss from under-nutrition.
Currently the employment situation, as ascertained by a survey of the top 100 companies in 1999 by N.C.P.E.D.P., is very low. Only 0.4% of the workforce consists of disabled people. Within public sectors undertakings it is 0.5%, and with multinational corporations it is 0.05%. Even in the civil services, the quota reserved for persons with disability is not met.
India has a developed framework of legislation, which consists of four core
disability specific Acts:
i) The Persons with Disabilities (Equal Opportunity, Protection of Rights and Full Participation) Act, 1995;
ii) Mental Health Act, 1987;
iii) Rehabilitation Council of India Act, 1992; and
vi) National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disability Act, 1999, that is, the National Trust Act.
The nodal Ministry, the Ministry of Social Justice and Empowerment, is responsible for policy formulation and supervision. It has under its control six national institutes for specific disabilities as well as the Rehabilitation Council of India.
The P.W.D. Act is the core legislation with respect to disability. In many respects, this Act is used as the policy benchmark around which the government and non-government sectors estimate their progress [regarding] the inclusion of disabled people in the mainstream. In addition, the Chief Commissioner for Persons with Disabilities [C.C.P.D.] and the Commissioner of Disabilities in various States oversee implementation of the Act. They have non-judicial powers of enforcement. However, programmes for disabled [people] are under the administrative control of the Ministry of Social Justice and Empowerment. There also exists, under this Act, Coordination and Executive Committees at Central and State levels, which have representation from government and non-government sectors and institutions. The functioning of this arrangement as a focal point for disability, and for assessing and developing policy, has been problematic.
The institutional arrangements mentioned above call for large inter-ministerial coordination as also coordination with various agencies. The arrangement makes the synchronisation between entities -- in forming overall policy, development, implementation and coherence of action -- a big challenge. The need for aligning the actions of over 4,000 NGOs increases the problem manifold, especially as the focus of NGOs [may be] on single disability issues. These coordination issues limit the ability to aggregate the influence on policy formulation. In any case, most of these NGOs are confined to urban areas and many of these organisations remain for persons with disabilities rather than organisations of persons with disabilities themselves. So there has recently been a movement to build a National Disability Network cutting across disabilities. However, the influence of this in formulation of policy, till date, is limited.
Some of the issues resulting from this are that the functioning of the C.C.P.D. and allied arrangements has been constrained as it is under-resourced, and thus weak in enforcement. As a result, the relative influence of the C.C.P.D., and specifically that of State Commissioners, is low.
In addition, arrangements are unclear how commitment and entitlement under the Disability Act are to be obtained by disabled people, especially when they relate to the fiscal responsibility of the public sector at different levels. Nor is there an overview of the fiscal impact on the budget if the entitlements of the Act are implemented.
There are, therefore, problems of aligning institutional arrangements for providing
the following to persons with disability:
a) Access to programmes for disabled people;
e) Social protection;
f) Assess to anti-poverty alleviating programmes; and
g) Changing attitudes towards disabled people.
An over-arching mechanism for aligning programmes, therefore, is necessary at the highest levels of the government. This over-arching arrangement would be the Disability Assistive Framework (or D.A.F.).
The Disability Assistive Framework would be built around an agreed goal that is to be achieved within an agreed timeframe.
A reasonable goal of the proposed D.A.F. could be the percentage of disabled
people that are:
* being educated in schools/colleges/institutions…
* receiving benefits of poverty alleviating programmes…
to a level equal to their percentage in the population by the year 2015.
In addition, disabled persons with mild and moderate disabilities should be fully integrated into the mainstream and be full participants in the life of the community.
The D.A.F. will focus on achieving the proposed goal by bringing coherence in the actions of the various actors in the field of disability. The group would normally have to be centered either in the Planning Commission (where resources are allocated) or in the office of the Prime Minister, that is, the P.M.O. (which is the apex coordinating body). The D.A.F. would make an assessment of the social and economic profile of persons with disability, carry out a needs study, identify the gaps and -- through studies -- provide inputs to the Planning Commission for resource allocation and to the P.M.O. for aligning efforts. For obtaining feedback on a continuous basis, the D.A.F. would establish a disability knowledge management system (D.K.M.).
The D.A.F. would not be a super-organisation giving directions but perform a staff function. It will generate knowledge for the various actors so as to enable them to align their efforts. It will thereby bring into the disability sector coherence in its actions for achieving the agreed goal by the year 2015.