Younger-Onset Provisions - Older Americans Act 2020
Implications of the ‘Younger-Onset’ Provisions of the Supporting Older Americans Act of 2020
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 nutritional programs, in-home services, transportation, legal services, elder-abuse prevention, and caregiver supports. It also contains provisions that ensure that those adults with younger-onset dementia (before age 60) have access to needed services, including nutritional services, supportive services, and respite care through the National Family Caregiver Support program. These new provisions, mirroring those already applying to adults age 60 and older, will ensure that adults of any age living with dementia resulting from Alzheimer’s disease and other causes can receive the care and support that they need. Numerous OAA-funded programs are essential to people living with dementia and their families, and these new provisions now will guarantee equity of access to 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 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 for dementia-related services. While the Act speaks to Alzheimer’s disease, the definition of eligibility extends its provisions to “an individual of any age with Alzheimer's disease or a related disorder with neurological and organic brain dysfunction.”
The National Institute on Aging has recognized Down syndrome as one of the risk factors for Alzheimer's disease. It has been well documented that most adults with Down are subject to early or precocious aging and that the mean age of the ‘onset’ of dementia (that is, the behavioral symptoms of Alzheimer's disease) is about 52-53 years of age. As has been noted by the National Task Group in its seminal 2012 report, ‘My Thinker Is Not Working’, the diagnosis of probable Alzheimer's disease usually occurs within three years of 'onset' of dementia with the progression of decline accelerated for adults with Down syndrome when compared to other adults. While adults with other intellectual disability are generally at the same risk as other persons in the population, some also show onset at a younger age. Thus, dementia-related services for adults with intellectual disability, including Down syndrome, and dementia, as well as for their family and other caregivers are needed prior to age 60.
Referrals to the aging network of younger age adults with intellectual disability affected by dementia, including Down syndrome, generally include self-referrals, referral from within the aging network (such as from senior centers, nutrition sites, or adult day services), or from older caregivers, siblings, and other relatives, spouses, or friends, or social care or religious organizations. Most adult with intellectual disability have some connection to the intellectual disabiltiy system, either from childhood or from needs identified during adulthood, and thus remain accomodated within the intellectual disability system. Others, however, may have lived anonymously as adults within their community, but as they age and experience cognitive decline, may come to the attention of social services agencies -- which in turn may refer them to the area agency on aging. In most instances referrals will involve adults age 60 and older. However, with the new provisions to the OAA, younger age adults may also now be seen as referrals.
What exactly does the the passage of the 2020 OAA reauthorization mean for adults with Down syndrome and other intellectual disability remains to be explicitly defined by the Administration on Community Living – the federal agency which administers the programs under the OAA. However, as we move toward a better understanding, it is the position of the National Task Group that these new provisions apply equally to anyone with an intellectual disability, including Down syndrome, affected by Alzheimer’s disease or any of the other causes of dementia. This means that aid and supports can be requested from area agencies on aging as well as the state units on aging, and states will have to plan and enact guidance for the provision of support to anyone with dementia under the age of 60. For the most part, area agencies on aging serve as the referral resource for linking a family member, or person with dementia, to the appropriate source for assistance and supports
Such supports helping persons with intellectual disability and their family caregivers would include assistance with finding diagnostic resources that could determine the presence and possible cause of dementia, linking to information and referral services, via the local Aging and Disability Resource Center, for obtaining home and community-based services (which would include case management and disease prevention and health promotion services, and with “information concerning diagnosis, prevention, treatment, and rehabilitation concerning age-related diseases and chronic disabling conditions, including [***] Alzheimer’s and related disorders with neurological and organic brain dysfunction”.* It would also include referrals to the state's National Family Caregiver Support Program, and if warranted, to adult protective services to address abuse and self-neglect when dementia is present.
To aid area agencies on aging, the NTG recommends production of webinars, fact sheets, and other educational matter that would provide detailed information on and inform about the challenges that people with intellectual disability, including Down syndrome, face when confronted with dementia, as well as what supports they and their caregivers may need. Advice for information and referral personnel on where to refer within the state's intellectual and developmental disabilities services system would be part of these materials. In many cases, the state and local disability agencies would be the first option for referral, as many offer services that aid persons with intellectual disability and dementia (such as residential and family caregiver supports). Person- and family-centered linkages between local disability agencies that aid adults with dementia and aging network agencies that aid caregivers would be ideal.
During this formative post-enactment period, the NTG will continue to work with other organizations with a vested interested in this issue to assure equity and that local aging network providers are aware of the particular issues faced by persons with Down syndrome and other intellectual disability affected by dementia. We welcome any comments or information that would aid us in this effort.
* Text from Older Americans Act
Updated June 11, 2020