Family support, engagement, and participation
Individuals with intellectual and developmental disabilities (IDD) frequently require support to perform basic daily activities and to achieve the national goals of equal opportunity, full participation, independent living, and economic self-sufficiency. Families are overwhelmingly the primary and often the major source of support for their family members with IDD. Nearly three-quarters of people with IDD live in their family home and most of these family caregivers provide more than 40 hours of care per week, including 40% who provide more than 80 hours of care per week (FINDS Survey).
Changing demographics are placing even greater demands on an already limited service system. The aging of the baby boom generation is resulting in an increasing number of people with IDD living with aging caregivers. These aging caregivers will have a greater 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.
Unfortunately, the increasing reliance on families is not being met with commensurate support. A generation ago, families were discouraged from keeping their family members with IDD at home and encouraged to use costly publicly financed institutional placements. Today, they face the other extreme where they are expected to be willing and able to provide lifelong support to their family members with IDD in place of appropriate community supports, even in cases when residing in the family home may not be a good option for adult offspring with IDD or themselves.
Our service system is increasingly being built around the expectation that adults with IDD will reside in the family home. This is not consistent with other national policies for vulnerable populations.
Experience of family members who provide support
Most people with intellectual and developmental disabilities live with their families. Families play an important role in supporting their family members with intellectual and developmental in achieving equal opportunity, independent living, full participation, and economic self-sufficiency. This support ranges from giving advice and emotional support to providing health, behavior, daily living, or other supports on a daily basis.
Family support looks at the needs of all of the members of a family across the lifespan. Family supports should strengthen the emotional and physical health and financial and material needs of families. Family needs change as families move through different stages of life; family supports should change with the family needs.