Communities catering to the differently abled on the rise as pandemic takes toll on families
Chennai: Communities for inclusive living of abled people along with people with disabilities is making progress in Chennai and in several regions in Tamil Nadu, the ongoing pandemic has stiffened ageing parents’ agony on caregiving for their adult children with mental and physical disabilities.
The biggest fear for parents is who would look after their child once they are gone. Akila Vaidhyanathan began pondering upon this question when her son, Nishant Sriram was just 10 years old. He was diagnosed with autism and aphasia. “We realised he cannot live independently and he requires support. So we thought of various options and a key question was what would he do the entire day?” says Vaidhyanathan. “Institutional setups do not engage them productively. Nishant is active, he loves to eat out and he enjoys all good things in life.” So Vaidhyanathan and her husband launched an inclusive living project by collaborating with Covai Care in Coimbatore which provides assisted living communities for senior citizens. 10% of the spaces were earmarked for families who have children with disabilities. “It’s a great age because as we grow older, we need help and some become single so during our time or after our time, our children can continue living in these homes with assistance.”
A 50 year old woman with intellectual disabilities was recently orphaned but her transition to living was smooth as she was already living with her aged mother in this community. Vaidhyanathan,55 and her family along with Nishant who is now 25 will in the future move into a set up they helped create.
Key figures driving this independent and inclusive living movement are mostly parents like them who have formed organisations such as SCAN (Special Child Assistance Network) in Chennai, CLAPS (Community Living Association of Parents) in Thiruvallur. The practice of ‘group homes’ is already ongoing in Tamil Nadu where an apartment is rented or bought and adults with disabilities live together with their peers, families and caregivers.
This is being scaled-up as on Thursday, SCAN launched its inclusive housing initiative with a private real estate builder, Akshaya Homes who will construct the project to be disabled-friendly. The adults with special needs can live with their peers and caregivers in a shared accommodation with the apartment having accessible amenities. The caregivers would be certified by a prominent NGO working across various sectors for people with disabilities, Vidya Sagar (formerly The Spastics Society Of India).
“The idea was that parents can watch how their adult children with special needs are being taken care of and they need not live in constant worry,” says Gopinath Ramakrishnan, co-founder and managing trustee of SCAN. “So far we have only concepts of institutions and hostels where adults with disabilities are forced to live together. Imagine being put in these places when you are in your 30s and 40s because the parents are in their 70s, they are incapacitated and they have no other choice. That’s not good enough. We want the parents to know that they are happy. We want to give the adults choices, flexibility and decision making power.”
While the movement for interdependent and inclusive living is growing, there are concerns on transitions over finances and savings. Vidya Sagar which runs a program called ‘Begin to Live Interdependently with Support Systems’ (BLISS) is finalising a Trust deed for an early-thirties woman with multiple disabilities. Her mother, a retired professor with visual impairment, is her sole caregiver and the daughter needs full support the whole day. A Delhi-based lawyer Roma Bhagat is helping the organisation and family to finalise the deed. “We want to create a support system in advance when the parents or primary caregivers are alive and are active,” said Smitha Sadasivan, member of the project and a member of the Disability Rights Alliance.