Implications of the ‘Younger-Onset’ Provisions of the Supporting Older Americans Act of 2020 for Families of People with Intellectual Disability Affected by Dementia
In March 2020, Congress passed, and the President signed into law, the 2020 reauthorization of the Older Americans Act (OAA; PL 116-131). The OAA provides support to America’s older adults in their homes and communities by organizing and delivering congregate and home-delivered meals, case management, transportation services, employment and volunteer programs, adult day care, senior centers and activities, personal care, homemaker and chore services, legal support, health promotion, and disease prevention. While most of the OAA services are restricted to those age 60 and older, the latest version of OAA clarified two provisions that are particularly important to family caregivers of younger age persons living with intellectual disability and experiencing early-onset Alzheimer’s or other dementia.
The first provision targets the family caregivers of this segment of aging adults, and clarifies that caregivers of individuals with younger-onset (also termed ‘early-onset’) dementia (i.e., evident before age 60) are eligible for needed services through the National Family Caregiver Support Program (NFCSP, OAA Title III E). This program offers several core services to family caregivers, including “information to caregivers about available services, assistance to caregivers in gaining access to the services, individual counseling, organization of support groups, and caregiver training respite care, and supplemental services, on a limited basis.” These NFCSP services are for family caregivers of any age when dementia is present and who support “an individual of any age with Alzheimer’s disease or a related disorder with neurological and organic brain dysfunction”, as well as to “older relatives, including parents, age 55 and older providing care to adults ages 18-59 with disabilities”). The OAA notes that priority to services is to be proffered to caregivers when dementia is involved.
Another clarification in the reauthorization that has implications for adults with intellectual disability who are younger than age 60 and experience dementia is protection from abuse. The Long-Term Care Ombudsman (LTCO) program, which advocates for the rights of residents of nursing homes, assisted living facilities, and other adult care facilities, and investigates and mediates problems, also can serve individuals under age 60 with dementia. Outside of these two specific programs, other OAA-funded programs are essential to people living with dementia and their families, and these new provisions expand equity of access to eligible caregivers of adults with younger-onset dementia, including adults with intellectual disability.
Over the years, attempts to include younger age adults with Down syndrome and other intellectual disability with precocious aging affected by dementia within the services provided under the OAA failed as the minimum eligibility age for OAA services was set at age 60. With the passage of the ‘Younger-Onset Alzheimer’s Disease Act’ (as a part of the OAA) this age restriction is eliminated if younger age adults with intellectual disability with dementia are supported by caregivers aged 55 or older and seek aid from an area agency on aging.