“What after me?” is the big question most families of people with developmental disabilities like ID and autism face. They worry about the future care and support of the people with developmental disabilities that they look after.
Within United Kingdom where I work, there are well developed social care systems, supported living, specialist residential care as well as short break arrangements. In spite of the availability of these provisions, I do come across parents who worr about the future of their children once they are gone.
Within a low and middle income country, this is further intensified due to lack of clear provisions for people with developmental disabilities to live with out family support. While strong family involvement in countries like India is largely positive, lack of formal support systems presents a significant worry for parents. This is particularly so in the context of nuclear families becoming a norm instead of the traditional joint set ups, sibling migrating to different part of the country or even world to pursue thier livlihood.
In this context it is important that parents / families of people with developmental disorders like autism have the right support as early as possible to think and plan the support. A number of issues would need to be carefully weighed for parents to make these decisions.
National Institute of Mental Health and neurosciences (NIMHANS) produced a leaflet called “What is after me?” to provide a reasonably comprehensive, yet succint guidance for parents.
Assisted living (Supported living) provisions in India
There is an increasing interest in the development of assisted / supported living for people with Intellectual Disability and or autism in India. Action for autism web site has some useful information on this.
Report of Expert Committee on Assisted Living: Kerala state planning board set up a committee to scope assisted living.
In this context, I am so pleased to see the supported living project by the Akshadhaa foundation, a parent based charity in Bangalore.
Akshadhaa foundation- Bengaluru
Akshadhaa has been actively involved in supporting children and young adults with developmental disabilities over the last 10 years. Akshadhaa is led by a dynamic couple (Sumana and Anirban) who have a daughter with autism and are passionate about changing the future of people with developmental disorders. Please see below an infogram describing the evolution of Akshadhaa over the last 10 years.
Akshadhaa supported living (assisted living): Bengaluru
This project is currently in development and expected to be ready by early 2024. This is set in a rural background, yet close to Bengaluru.
Akshadhaaa aims to create a vibrant community where people with special needs can thrive with as much independence as possible. For the parents it gives the opportunity to participate or sit back and relax to see their child lead an independent life. The facilities are meticulously aimed to provide a healthy, happy and fulfilled life for all the residents.
The project envisages residential quarters for the special needs individuals with the parents quarters in the same campus but in a separate sections. Apart from these residential facilities, There will be provision for a Resource center, Hospital, staff quarters, canteens, auditoriums, guest house, vocational training centre and a lot of free open spaces. The project with aim for the highest Green Rating, in an effort to ensure sustainability and environment friendliness. The project aims to adopt smart environment management policies to ensure the rhythm with the overall harmony of the AALP community. I look forward to this shaping up as this is a collaboration of like minded parents rather than a commercial venture.