Excluded from Life is an effort to collect and collate information about obstacles that exclude children with intellectual and developmental disability from accessing services, and constructing responses to such barriers.
The Excluded from Life compendium is a series of inquiries about how much persons with intellectual and developmental disability are excluded from society, why and in what ways, and what can be done to reinstate them to full inclusion. It examines the situation from the point of view of those with challenges, as well as those responsible for providing Special Care Services. It envisions plans and policies that will properly address the right to a life with dignity to which persons with challenges are entitled and promote a more inclusive and cohesive society.
In our initial consultations we found that caregivers of persons with disability highlighted the following problems:
Individuals with intellectual and developmental challenges are seen by the majority of people in India as fundamentally ‘flawed’ and perceived to have diminished capabilities, and therefore inferior. This places them at the bottom of the social structure making them vulnerable to discrimination, and manifesting in their marginalisation from resources and decision-making.
There is a long way to go in building compassionate systems that can be used by persons with intellectual and developmental disability and their caregivers. Systems for the empowerment, care and support must respond to a life cycle approach covering identification, diagnosis, treatment, support, health care, legal and financial concerns, livelihood options and supported living.