CHENNAI: We know something is wrong with the system when an aged father, who cared for his disabled son for 44 long years, decides it’s better to kill him than leave him behind, alone. This death is an indictment of the awareness levels on two-decade-old State and civil society support mechanisms, and structures such as local-level communities says Vaishanavi Jayakumar, member of Disability Rights Alliance.
She says: “This is a question many aged parents ask when the start worrying about the needs of their differently-abled dependents, who have high support needs. It is tragic and shameful that in the absence of an answer, a father has taken his son’s life and attempted to end his own too because he could see no other option.”
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Two decades back, a national trust was created for persons with autism, cerebral palsy, mental retardation, and multiple disabilities, under the National Trust Act, 1999.
The Act aims to enable persons with disabilities live independently. The Act and the trust aims to create equal opportunities in the society and protect persons with disabilities after the death of their parents by evolving procedures for the appointment of guardians and trustees. The Act was later amended in 2018, to streamline the appointment and resignation of members of the Trust.
Though the Act talks about guardianship, and grants to help with caregiving, it does not address welfare concerns. “There are a bunch of schemes in this regard, most have not caught on,” says Vaishnavi. While the State government’s policy note talks about the setting up of a few homes, even activists are not aware where these are located.
The Centre too has a few pay-and-use homes called Gharaunda Centres, for life long shelter and care of persons with disabilities. While there are stringent standards in place to ensure quality, there aren’t enough centres to cater to demand, say activists. For instance, each of these centres are allowed to accommodate only 20-26 persons.
Registered organisations are supposed to apply again if they have sufficient numbers to create a new centre. These centres are to function as lifelong group home facility, including the provision of basic medical care. The accommodation will be paid for by the parents, and centres must house an equal number from Low Income Groups.
At the civil society level, efforts to improve facilities continue. “We have been researching since 2016 to set up a support group, to help parents gain exposure. We hold discussions on the subject based on models and studies from foreign countries,” says Ummul Khair of Vidhya Sagar.