The barriers in community support for people with disabilities are many and need both government and civil society interventions. However, the foundational issue is the lack of awareness about the rights of people to live and participate in the community, this is both among duty bearers and the local populations.
I would like to give two recent stories:
- A family living in an apartment block were tormented when the neighbor’s complained about their middle aged son with intellectual disability to the police, asking why this man was not admitted in an institution? The police visited the family and told them to admit him immediately or they will have to arrest him. Both felt he would be safer in an institution. This is in a metropolitan city.
- A college student who is a wheelchair user wanted to try and make friends. When she met a classmate in the corridor, she said hello to her. Her classmate asked her if she needed any help. She never imagined she wanted to make a friend.
Awareness Raising can happen best if we proactively think of strategies, to build a community around each person with a disability. This must happen across the lifespan. For example, even the scant early intervention programs available will focus on therapy, education and parent training but not on how to use resources and people in the neighborhoods to ensure the child and family participate and do not just isolate themselves. Even inclusive education in schools does not lead to sustained friendships in the community and so also for adults with disabilities. Even at home they are isolated and lonely.
Besides Awareness Raising, it is very important to identify and understand the support needs for persons with disabilities, and then think of possibilities to address these through support systems built within the community itself. It is through both tapping the resources which are already embedded/available and also through building new ones. When we say identifying the needs, I agree with Badege Sam that the best consultants are the Persons with Disabilities themselves. It is very important to include PwDs and OPDs in all stages of decision making and planning for support systems. We need to look for more community based solutions, which ensure and enable participation of PwDs. Unless we do this, people with disabilities will always be segregated and the attitudinal barriers will remain and we all will end up in seeing mini institutions/facilities catering to the needs of a group of adults with disabilities.
Here, I would like to share what we are trying to develop in Vidya Sagar Chennai on building support systems for addressing the need of ‘Living independently’ for adults with disabilities. This cross disability model evolved as a result of the overwhelming concern of families of persons with disabilities, on what happens after them? Here, we are trying to unpack what independent living means for the stakeholders.
The model has been named as BLISS – Begin to Live Interdependently with Support Systems. We decided to use the word’ interdependent’ because this does not mean lack of independence, but instead points to the way of the world. All of us live interdependent lives and use supports, which are provided and some we build ourselves.
This has nine pillars to build community support.
- Adults with disabilities can choose to make a plan for themselves, through a Person Centered Planning process.
- Training Programs to create Caregivers, Personal Attendants, Job Coaches and other professionals, who are needed in the community.
- Making personal spaces, homes and workplaces accessible to facilitate Independent living. Knowledge on Assistive Technology and devices. Accessible Transport.
- Facilitating first circle of friends and supported decision making.
- Supporting changing needs in therapy and assistive devices.
- Supporting Shared Housing and Group Homes.
- Initiating training for peer counsellors.
- Supporting Employment and Entrepreneurs.
- Supporting Leisure time.
Our approach towards identifying the support needs was also through a survey which was conducted for 110 families of Persons with Disabilities. The outcome of the needs based survey raised many questions related to various challenges/barriers in independent living of persons with disabilities. It was observed that persons with disabilities are restricted from participation across all domains of life such as domestic activities, pursuing their hobbies and interests, enjoying leisure, sports and culture, education and an accessible workplace. They also expressed inadequacy of Assistive devices suiting their specific needs.
It also showed that, while many adults with disabilities needed support systems to address all these concerns, they had also learnt passivity and did not want to trouble their families.
We hope that through this support model, we can break down some of those attitudinal barriers and see people with disabilities participate more fully in their homes ,among their families and communities.
I would also like to add that this model is an evolving process and we don’t stop with just the needs analyzed after the survey. We constantly should listen to the voices of the stakeholders, as we do realize that something which works for one may not work for another. Hence it is equally important to relook at the support systems even after they have been made and implemented.