The Center is working with partners to gain a deeper understanding of family caregivers, who are often elderly, and what supports they might need to keep their adult family member with a disability in the home environment.
With funding from the Indiana Family and Social Services Administration Division of Disability and Rehabilitative Services, the Center coordinated a qualitative study of the experiences of 21 aging Hoosier families, conducting in depth interviews and focus groups with family members, professionals, and self-advocates. The study provided several key recommendations:
- Policy Recommendation 1: Assess the family/community support system as well as the individual with a disability.
- Policy Recommendation 2: Expand and clarify the definition of respite.
- Policy Recommendation 3: Expand support for futures planning.
- Policy Recommendation 4: Promote access to existing information resources.
- Policy Recommendation 5: Support education and training for family caregivers and consumers.
The five major policy recommendations clearly require multiple strategies (cited in the report) and, in several instances, further research targeted towards implementation. Though an expanded family support system for aging families will require additional investments, there is reason to believe that supporting families across the lifespan to do what they do so well will go far to reduce the burden placed on public funding when fragile family systems break under pressure. Moreover, the research clearly shows that aging adults with developmental disabilities themselves represent an under-appreciated resource and contribute significantly to the health and well-being of families.
The research from this study was presented by Jane Harlan-Simmons and Sharon Hauss at the 2011 National meetings of the American Association for University Centers in Excellence in Disabilities. You can view their handouts and Powerpoint presentation here.