The ‘who after us’ question is one that nags all parents with disabled children. When it comes to children with intellectual disabilities those questions are even more troubling as there are varying challenges associated. CovaiCare’s integrated community living initiatives in Coimbatore and Mysore offer a way forward.
Radhika Nair has mild mental retardation (MR) and autism and multiple disabilities. The 33-year-old works with a firm in Mysore and has always lived with her parents. Her brother and sister-in-law live in Bengaluru and are in regular touch. Radhika’s parents know she will be looked after even when they are not around.
Inclusive living for people with autism in communities
Yet the Nairs’ are keen their daughter has a space to call her own, the means to an independent life. This drew them to CovaiCare. Known for its retirement communities for senior citizens. CovaiCare has launched integrated communities for senior citizens, including senior citizens with intellectually disabled children at some centres in Coimbatore and Mysore.
“We moved into Covai Solace in Mysore and there are three families here, including us”, says Lekha Nair. “We wanted Radhika to have a life of her own. This community-based living model will allow her to transition to that gradually”.
Radhika lives with her parents for now. She will eventually move into a hostel for disabled people in the same community. There are safe, enclosed and independent rooms with a caregiver in charge.
Community governed by trust of parents & experts
This model for inclusive living, says Colonel A Sridharan, Managing Director, CovaiCare, has acquired shape in collaboration with parents and organisations working with disabled children and youth
The idea came to us from Akila Vaidyanathan, who is co-founder of Amaze Charitable Trust. She has a son with a disability and had concerns about his future. Other parents had approached us as well with similar requests. We have communities for senior citizens and felt we could have them for children with disabilities. The child will be a part of the community with the community realising it has a stake in that child. – Colonel A Sridharan, Managing Director, CovaiCare
CovaiCare works in collaboration with The Amaze Charitable Trust in Coimbatore. “They mentor all the disabled children”, says Colonel Sridharan. “We cater to children with autism, cerebral palsy, Down syndrome and intellectual disabilities. Those with cerebral palsy need 24/7 support so we have support staff accordingly. Depending on the composition, we ask Amaze to help us”.
So far CovaiCare has launched such integrated community homes in Mysore and Coimbatore. There are plans to launch more in the coming years.
“In any of the new communities started by CovaiCare, 10% of the homes will be reserved for people with disabilities”, says Akila. Each centre will be run by a charitable trust made up of seven people. “This will ensure that financial decisions are taken in consultation and in a system of trust. The trust will include parents, a lawyer and an auditor. They will also collect funds so that in case the beneficiary trust runs out of money, the person with disability will be supported”.
Trust ensures financial security & care
The aim of the trust, says Sriram Narayan, Co-founder, Amaze Charitable Trust, is to ensure financial security as well proper care is maintained.
“There were two parts to the financial security – living expenses and medical expenses”, says Sriram, who is a chartered accountant. “We also felt the need to set up a nest egg to protect the children as we go along as the expenses required cannot be predicted over time.” Accountability was another concern. To address these issues, the idea of setting up a trust was born.
Within the community there will be avenues and opportunities offered to keep people with disabilities gainfully occupied. The success of this pioneering model could show the way forward for many other families in India.