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HELPING HAND
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National Trust: Giving the disabled a sense of belonging
S
Rohini
The disabled population in the country as per a rough estimate
is around 3 per cent. While the disabled are considered as a
socially disadvantaged group, there are sections within it that
are more vulnerable. To this category belong persons suffering
from autism, cerebral palsy, mental retardation, and multiple
disability. Parents of children with such disabilities have
a tremendous responsibility in integrating them within the society.
In the case of the economically disadvantaged groups, the problem
gets compounded by lack of financial wherewithal. A problem
that cuts across the economic status of such families is the
future of these children after the death of their parents or
guardians. A major initiative taken by the government is the
setting up of a National Trust for the welfare of persons with
autism, cerebral palsy, mental retardation and multiple disabilities.
The Trust’s endeavour would be to enable and empower persons
with disability to live independently within the community to
which they belong as far as possible. It would also deal with
the problems of those who do not have family support. The Trust
will also promote measures for their care and protection in
the event of death of parent or guardian and will also evolve
procedures for the appointment of guardians and trustees. Voluntary
organisations which provide need-based services will be supported
by the Trust.
The Trust will be managed by a Board at New Delhi and its chairpersons
would be a nominee of the central government with experience
and expertise in the field of disability. Voluntary organisations,
associations of parents of persons with autism etc., and other
organisations registered with the Board will also be represented.
The Trust was set up with a one-time corpus fund of Rs 100 crore
and can receive bequest of movable property but shall not be
for the exclusive benefit of the person with the disability
named as beneficiary in the bequest, although it is obligatory
on the part of the Trust to make arrangements for the adequate
standard of living for the beneficiary named in the bequest.
Organisations of persons with disability or any association
of parents of persons with disability that are registered with
the Trust are eligible for assistance. An application for registration
has to be made as per the procedure laid down by the Board.
Local level committees are vested with the responsibility of
scrutinising applications for appointment of guardians and passing
the requisite orders. The Board has to be informed of its actions.
The guardian so appointed has to render an annual financial
account of the property and assets and the sums received and
disbursed on behalf of the person with disability. The removal
of the guardian can take place in case of abuse or neglect of
the person with disability or misappropriation or neglect of
property.
The Board is expected to function with utmost transparency.
Its books and documents are open to inspection by the registered
organisations. It will have to hold an annual general meeting
of registered organisations and a notice to that effect along
with a statement of accounts and records of its activities during
the proceeding year will be sent.
The Board has a huge unchartered territory to cover and fulfilling
the objectives of the Trust will be both an opportunity and
a challenge. There are high expectations, especially from the
families of persons with disability. While there are several
voluntary organisations and parents associations working in
this field, yet their reach is limited. This is especially so
in respect of the economically and socially disadvantaged groups.
Reaching out to this category will be the greatest challenge
before the Trust. It will, therefore, have to keep considerations
of equity in terms of spatial distribution between various categories
of disability receiving assistance. To achieve this, the Trust
will have to build up a data base for planning its activities.
The recent Census where for the first time data on persons with
disability was being collected can serve as a benchmark, but
it has to be updated periodically. Information dissemination
is yet another area where a lot of spade-work has to be done,
especially in the rural and far-flung areas.
The Trust will have to take innovative measures for interface
with the various ongoing programmes in the central ministries
for creating awareness about the Trust, its objectives and activities
as well as to assess the target population in terms of numbers,
composition, regional distribution etc. Voluntary action has
to be created wherever there is a vacuum.
The ministry of social justice and empowerment, the administrative
ministry for the Trust, has a chain of National Institutes (NIs)
and Composite Centres which deal with various types of disability.
Community-based programmes are an integral activity of these
NIs and centres. The ministry of rural development has the district
rural development agency (DRDA) formations across the country
and their programmes are intended largely for those below the
poverty line. The edifice of the Trust will have to rest on
a sound foundation for building the superstructure. Hence it
is important to build a reliable statistical base. It is here
that representatives of trade, industry and commerce can help
in development of modules of skill development suited to the
these persons with disability and assist in their employment.
There has to be well thought out and carefully crafted skill
formation activities suited to these persons.
The setting up of the National Trust is a unique endeavour and
holds out a rare opportunity for mainstreaming the most difficult
category of persons with disability. In the final analysis,
its success hinges on the joint co-operation of the government,
private sector and voluntary organisations.
(The writer is Economic Adviser, Ministry of Steel. The views
expressed are personal) |
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