Younger-Onset Provisions - Older Americans Act 2020
Statement on the 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.[i] 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[ii] 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.”[iii] 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”).[iv] The OAA notes that priority to services is to be proffered to caregivers when dementia is involved.[v]
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.
Intellectual disabilities are composed of a variety of conditions with causes linked to socio-economic deprivation, genetics, exposure to toxicities, or brain illnesses or injuries. Among these causes is Down syndrome, a genetic-linked condition. The National Institute on Aging has recognized Down syndrome as one of the risk factors for Alzheimer's disease and has invested substantial funding into discovery of underlying causes and trajectories.[vi],[vii] Thus, these provisions in the OAA for social care and supports are critical to aiding families with persons with Down syndrome as many adults with Down syndrome are at particular risk of younger-onset Alzheimer’s disease. Studies show that there are precursor biomarkers that indicate that the genesis of Alzheimer’s disease occurs some two decades prior to the recognition of the symptoms of dementia. Further, it is known that most adults with Down syndrome are subject to earlier or precocious aging and that the mean age of the ‘onset’ of dementia (that is, the observance of 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, in many cases, dementia-related services for adults with intellectual disability (including those adults with Down syndrome) who are affected by dementia, as well as for their family and other caregivers, are needed prior to age 60. In many instances, such services may be available from the intellectual and developmental disabilities system, but if the adults are not enrolled or supported under this system, they may come to the attention of other systems, such as adult protective, social welfare, or the aging network.
Referrals to the aging network of younger age adults with intellectual disability affected by dementia (including Down syndrome) may stem from self-referrals, referrals 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 from local social care or religious organizations. Most adults with intellectual disability may have some connection to the intellectual and developmental disability system, either from childhood or from needs identified during adulthood, and thus remain accommodated within the intellectual and developmental disabilities 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 or their caregivers to an area agency on aging.
What exactly does the passage of the 2020 OAA reauthorization mean for adults with intellectual disability remains to be explicitly defined by the Administration on Community Living – the federal agency which administers the programs under the OAA.[viii] In the meantime, as we move toward a better understanding of the legislative intent, it is the position of the National Task Group that these new provisions mean that aid and supports for family caregivers can be requested from area agencies on aging as well as the state units on aging. Also, given these general provisions, we posit that states should also plan and enact guidance for the provision of supports to family caregivers of persons with dementia under the age of 60.[ix] This could be done, when considering the needs of families caring for adults with intellectual disability, in collaboration with the state’s council on developmental disabilities,[x] state intellectual and developmental disabilities authority, and/or state health offices responsible for dementia services planning.
It also means that many Aging and Disability Resource Centers (ADRCs)[xi], [xii], often linked to or part of an area agency on aging, may be a resource for help to families facing home-based caregiving for an adult with early onset dementia. In general, dementia-focused services, under the OAA’s ‘disease prevention and health promotion’ provisions, may include “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”.[xiii]
To aid people with intellectual disability affected by dementia and their caregivers, 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 ADRCs and 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.
The NTG also recommends a dialogue between states' unit on aging and the states' intellectual and developmental disabilities authority to agree upon mechanisms that promote equity, cooperative planning, means of referrals, joint provision of services to families, and other collaborations designed to help persons with intellectual disability affected by dementia and their families.
The NTG continues 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 issues faced by persons with intellectual disability affected by dementia. We welcome any comments or information that would aid us in this effort.
[i] Robertson, L. (2020). A Renewed Commitment to Our Nation’s Older Adults. Sourced at https://www.hhs.gov/blog/2020/03/25/renewed-commitment-our-nation-s-older-adults.html
[ii] Older Americans Act, Title III, Sec. 302 (3). The term ‘‘family caregiver’’ means an adult family member, or another individual, who is an informal provider of in-home and community care to an older individual or to an individual of any age with Alzheimer’s disease or a related disorder with neurological and organic brain dysfunction.
[iii] Administration on Community Living. National Family Caregiver Support Program. Sourced at https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
[iv] Older Americans Act, Part E, Sec. 373 (4). The Act states that the term ‘‘older relative caregiver’’ ‘means a caregiver who— (A)(i) is age 55 or older; and (ii) lives with, is the informal provider of in-home and community care to, and is the primary caregiver for, a child or an individual with a disability.’
[v] Older Americans Act. Part E. Sec. 372, b. “In providing services under this part, for family caregivers who provide care for individuals with Alzheimer’s disease and related disorders with neurological and organic brain dysfunction, the State involved shall give priority to caregivers who provide care for older individuals with such disease or disorder.”
[vi] National Institute on Aging. Alzheimer’s Disease in People with Down Syndrome. Sourced at https://www.nia.nih.gov/health/alzheimers-disease-people-down-syndrome
[vii] National Institute on Health. Research on Down Syndrome. Sourced at https://downsyndrome.nih.gov/research
[viii] Such guidance falls under the purview of the Assistant Secretary (as per the Older Americans Act).
[ix] Older Americans Act, [Title II, Sec. 201 f (2). “It shall be the duty of the Assistant Secretary, acting through the individual designated under paragraph (1), to develop objectives, priorities, and a long-term plan for supporting State and local efforts involving education about and prevention, detection, and treatment of mental disorders, including age-related dementia, depression, and Alzheimer’s disease and related neurological disorders with neurological and organic brain dysfunction.”
[x] Administration on Community Living. State Councils on Developmental Disabilities. Sourced at https://acl.gov/programs/aging-and-disability-networks/state-councils-developmental-disabilities
[xi] Administration on Community Living. Aging and Disability Resource Centers (ADRCs). Sourced at https://acl.gov/programs/aging-and-disability-networks/aging-and-disability-resource-centers
[xii] Older Americans Act. Title I, Sec. 102, (4). “The term ‘‘Aging and Disability Resource Center’’ means an entity, network, or consortium established by a State as part of the State system of long-term care, to provide a coordinated and integrated system for older individuals and individuals with disabilities (as defined in section 3 of the Americans with Disabilities Act of 1990 (42 U.S.C. 12102)), and the caregivers of older individuals and individuals with disabilities, that provides, in collaboration with (as appropriate) area agencies on aging, centers for independent living (as described in part C of chapter 1 of title VII of the Rehabilitation Act of 1973 (29 U.S.C. 796f et seq.)), and other aging or disability entities—"
[xiii] Older Americans Act. Title I, Sec. 102, (14)(K).
Updated July 15, 2020