Yesterday, I attended a meeting at Vidya Sagar, initially scheduled for 1030-1330. Many convincing points were raised, many obviously pressing considerations were brought up, but the issue is so large that no definitive conclusions could be reached nor could `to do' lists be drawn up. I unfortunately had to leave as it was already almost 1400 and there was no sign of some sort of consensus being reached any time soon. As though to punish me for my inconsiderate and rude behaviour, the elevator stopped almost as soon as I got in and it started moving! After repeated attempts to ring the alarm bell, I was finally `brought down'. After thinking about it, I felt I should try to make amends and try to raise general consciousness on the issue at hand.
The subject of the meeting was `supported decision making for persons with typically psycho-social or intellectual disability and even those with `high support needs'. If you think about it, most institutions for persons with disability were founded by a parent of a child with disability, eg., the Association of People with Disabilities (in Bangalore), the Spastic Society (in Bombay), Vidya Sagar (in Chennai), ... The over-riding concern/worry of N.S. Ayyangar, Mitu Alur and Poonam Natarajan would have been how the child would fend for herself/himself when the parents are no longer around! Much of yesterday's discussion centred on such worrying facts as: the `child' may not even be aware of money-management, or even permitted to open and maintain a bank account in view of our sloppy attempt at writing an India-specific version of the UNCRPD! The mind boggles at the magnitude of the problem of setting systems in place to help such `children' (who would likely be fully grown adults when confronted with the situation outlined).
There is a cousin of mine whose parents are no more, but fortunately, a trust was put in place by his father, manned by his son's siblings and their spouses, which was endowed sufficiently handsomely to ensure that his son's needs would always be taken care of - and fortunately there is no joker in the pack with the need/greed to misuse the funds set aside for running this trust. Since not everybody would be so fortunate, it seems natural that each such `child' must be able to have a body of trusted friends and relatives to orchestrate the necessary infrastructure to ensure a `normal' life, without fear of being taken advantage of by crooked members of his/her trust. The need to set desirable systems in place for every such `child' is the crying need of the hour that the group at Vidya Sagar attempted to make a dent into at yesterday's discussion. This is the sort of task that should be taken up seriously by our Ministry for Social Justice and Empowerment, rather than renaming themselves using the term Divyang-jan - by which artifice they divert the problem-solving to the divinity with which they portray the PWD they should be serving!
Why can't MyGov take a serious step in this direction? Most importantly, get inputs from the stakeholders before putting up a faulty system in place!
The subject of the meeting was `supported decision making for persons with typically psycho-social or intellectual disability and even those with `high support needs'. If you think about it, most institutions for persons with disability were founded by a parent of a child with disability, eg., the Association of People with Disabilities (in Bangalore), the Spastic Society (in Bombay), Vidya Sagar (in Chennai), ... The over-riding concern/worry of N.S. Ayyangar, Mitu Alur and Poonam Natarajan would have been how the child would fend for herself/himself when the parents are no longer around! Much of yesterday's discussion centred on such worrying facts as: the `child' may not even be aware of money-management, or even permitted to open and maintain a bank account in view of our sloppy attempt at writing an India-specific version of the UNCRPD! The mind boggles at the magnitude of the problem of setting systems in place to help such `children' (who would likely be fully grown adults when confronted with the situation outlined).
There is a cousin of mine whose parents are no more, but fortunately, a trust was put in place by his father, manned by his son's siblings and their spouses, which was endowed sufficiently handsomely to ensure that his son's needs would always be taken care of - and fortunately there is no joker in the pack with the need/greed to misuse the funds set aside for running this trust. Since not everybody would be so fortunate, it seems natural that each such `child' must be able to have a body of trusted friends and relatives to orchestrate the necessary infrastructure to ensure a `normal' life, without fear of being taken advantage of by crooked members of his/her trust. The need to set desirable systems in place for every such `child' is the crying need of the hour that the group at Vidya Sagar attempted to make a dent into at yesterday's discussion. This is the sort of task that should be taken up seriously by our Ministry for Social Justice and Empowerment, rather than renaming themselves using the term Divyang-jan - by which artifice they divert the problem-solving to the divinity with which they portray the PWD they should be serving!
Why can't MyGov take a serious step in this direction? Most importantly, get inputs from the stakeholders before putting up a faulty system in place!
A support system is essential.
ReplyDeleteThank you Prof.Sunder for sharing the need for a rights based supported decision making system towards safe & secure independent living in the community for persons with intellectual / psycho social disabilities and those with high support needs. Hope the message gets across to the public as well as the Government leading to new joint initiatives. Smitha Sadasivan for Vidya Sagar's Supported decision making initiative.
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