National Family Caregiver Support Program

Congress created the National Family Caregiver Support Program as part of the Older Americans Act Amendments of 2000, designed to help family members provide care for the elderly at home. To implement the NFCSP, states received substantial grants to run programs to provide critical support, including home and community-based services, to help families maintain their caregiver roles. Congress included in the population to be served caregivers of persons with intellectual and developmental disabilities as well as grandparents and other relatives raising grandchildren at-risk under the age of 18. This group was included because Congress recognized that such carers have provided lifelong care for their children and adults offspring with disabilities and as they themselves are aging, they may require special attention to help them in their older age (as well as help then with the needed transitions for their sons and daughters). To help implement these provisions, the U.S. Administration on Aging awarded a grant to The Arc of the United States to help older parents and other carers obtain supports and services from local aging agencies.

Older caregivers of people with developmental disabilities represent a sizable population. It is estimated that some 1.9 million persons with developmental disabilities live at home or with a family caregiver. Some 26% of these caregivers are age 60 or older. A significant portion of in-home supports are being provided by family caregivers who will be aging beyond the capacity to provide care over the next 10 to 20 years. Some studies have found that about 50 percent of such families remain unidentified until a concerted outreach effort is undertaken. The average age of an adult with a developmental disability living with parents age 60 and older is about 38 years, the average age of an adult living with parents age 41 to 59 is about 22 years, and the average age of a youngster living with parents under age 40 is 14 years. Within each of these age categories, each group of parents will face a variety of challenges. This may be particularly acute for those older parents whose adult offspring are in the 40 to 60-age group, because many adults living with their parents in this age group have Down syndrome, which is associated with premature aging and a high risk for Alzheimer's disease. In addition, grandparent caregivers, while mostly providing a home for younger-age children, also care at home for young adults with developmental disabilities who are not fully independent.

Given current population trends in the United States, a growing number of caregivers will themselves age into eligibility for Older American Act services over the next 10 to 20 years (some estimate that the number will be three times what it is today). Recognition of these trends led Congress to include a targeting provision for caregivers of persons with intellectual and developmental disabilities within the provisions of the National Family Caregiver Support Program. It is anticipated that most of these families will ask for assistance with working through transition issues related to their lifetime caregiving.

Many area agencies on aging and local aging agencies have not normally seen this group of caregivers as part of their natural constituency. Thus, the challenge is to provide these organizations with sufficient information and appropriate strategies to enable them to develop local responses to the referrals and requests for assistance received from older caregivers and in particular help them partner with state and local developmental disability agencies, who oftentimes are already prepared to help such older caregivers once they are identified. The Arc of the US has been carrying out a national project designed to enhance the abilities of area agencies on aging to conduct outreach and provide services to older caregivers of persons with developmental disabilities. The Administration on Aging (AoA) commissioned this project because it wanted to ensure that the area agencies on aging were also including this group within their mandate. The focus of the project has been encouraging local chapters of The Arcs and area agencies on aging to cooperate and collaborate in terms of support older caregivers once they were identified by the area agencies on aging outreach and casework initiatives.