Understanding and Addressing Voices of Adults with Disabilities within their Family Caregivers Contexts: Implications for Capacity, Decision-Making and Guardianship

Abstract

Despite decades of human rights enlightenments, adults with developmental disabilities continue to experience among the most poorly understood support needs and preferences of any population.[1] Adults with disabilities have relatively less access to social inclusion and as part of an overall aging population, these adults are increasingly outliving the support capacity of aging parents and do not often have spouses and children to turn to for support. In addition, voices of adults with disabilities, because they are often expressed in less conventional forms, are under-represented in professional interactions and research related to support.[2] In sum, adults with disabilities live with a paradox of having amongst the most pressing of support needs yet the greatest difficulties in having their needs understood and addressed.