A generation ago, families were discouraged from keeping their family members with IDD at home and encouraged to use costly publicly financed institutional placements. Unfortunately, the increasing reliance on families is not being met with commensurate support. Nor is it consistent with the vision of self-determination. This is not consistent with other national policies for vulnerable populations. State IDD service systems are increasingly being built around the expectation that adults with IDD will reside in the family home. In addition, an increasing number of persons with IDD are becoming parents and may require more support navigating service systems for their own children.
The aging baby boom generation of caregivers has unique need for family support, such as assistance in developing desired in-home support plans or transition plans to community living for their family member with IDD when they are no longer able to continue in their caregiving role. Changing demographics are resulting in even greater demands on these family caregivers. The vast majority of people with IDD live in the family home and families are overwhelmingly the primary source of support for their family member with IDD. Family caregivers include, but are not limited to, parents (including those with IDD themselves), adoptive parents, foster parents, siblings, uncles, aunts, cousins, grandparents, grandchildren, and individuals who are in spousal-equivalent relationships. Joint Position Statement of AAIDD and The Arcįamily support services* and other means of supporting families across the lifespan should be available to all families to strengthen their capacities to support family members with intellectual and developmental disabilities (IDD**) in achieving equal opportunity, independent living, full participation, and economic self-sufficiency.
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