Shivani Gupta

In LIC the family is responsible for providing support to persons with disabilities and this is socially and often legislatively instilled. Moreover, there is a gender perspective where it is the women of the family who provide support.

While the significance of informal support provided by the family cannot be undermined, studies show that there are adverse social, mental, and physical health effects on both the support provider and receiver in the long term.  Therefore there is a need to look at culturally appropriate models of support in the community for persons with disabilities that are economically viable and acceptable to the users.

I feel that the initial efforts towards creating community support services have to be basic that create the foundation for a strong system that considers community support as a right and a precondition for the inclusion of persons with disabilities. These may entail having a

  • Strengthening the legislative framework in LIC to address community support not from a ‘care’ perspective where persons with disabilities are silent recipients of care that is adequate only for survival, but from a ‘rights’ perspective where support is available to them to live a more self-determined life.
  • Creating a cross-disability model of community support that can be improved with feedback of support users and providers, showcased to the governments who can then replicated. Creating such models may require strengthening community-based programs which, in collaboration with the government and the community can create respite care and other models of community support. There are good practice models that exist but they may be disability-specific. Therefore bringing many models together to create a large cross-disability model may be required.
  • Community-based programs may also run community awareness programs on disability and community support, focused on how the lives of persons with disabilities and the family ‘caregivers’ can be improved. Also increasing self-awareness projects of persons with disabilities who most often accept the survival mode they live in not knowing what may be better.