Families, not social service agencies, nursing homes, or government programs, are the mainstay underpinning long-term care (LTC) for older persons in the United States. More than 22.4 million persons are informal caregivers–providing unpaid help to older persons who live in the community and have at least one limitation on their activities of daily living. These caregivers include spouses, adult children, and other relatives and friends.
The degree of caregiver involvement has remained fairly constant for more than a decade, bearing witness to the remarkable resilience of the American family in taking care of its older persons. This is despite increased geographic separation, greater numbers of women in the workforce, and other changes in family life. Thus, family caregiving has been a blessing in many respects. It has been a budget-saver to governments faced annually with the challenge of covering the health and long-term care expenses of persons who are ill and have chronic disabilities. The economic value of our nation’s family and informal caregivers has been estimated at $257 billion annually.
The National Family Caregiver Support Program
The enactment of the Older Americans Act Amendments of 2000 established an important new program, the National Family Caregiver Support Program (NFCSP). The program calls for all states, working in partnership with area agencies on aging and local community-service providers, to have five basic services for family caregivers.
These services include,
- Information to caregivers about available services;
- Assistance to caregivers in gaining access to services;
- Individual counseling, organization of support groups, and caregiver training to caregivers to assist the caregivers in making decisions and solving problems relating to their caregiving roles;
- Respite care to enable caregivers to be temporarily relieved from their caregiving responsibilities; and
- Supplemental services, on a limited basis, to complement the care provided by caregivers.
Currently funded at $155.2 million, this program has served more than 275 thousand caregivers nationwide. Efforts regarding NFCSP have resulted in new partnerships, improved access to services, outreach to special populations, and provision of services to respond to the unique needs of families.
- Family caregivers of older adults
- Grandparents and relative caregivers, age 60 years or older, of children no older than age 18 (including grandparents who are sole caregivers of grandchildren and those individuals who are affected by mental retardation or who have developmental disabilities)
The statute requires states to give priority consideration to:
- Persons in greatest social and economic need (with particular attention to low income individuals); and
- Older individuals providing care and support to persons with mental retardation and related developmental disabilities.
Other Important Features
In addition to the formula grants, state and area agencies on aging, nonprofit community service providers, institutions of higher education, and national organizations received grants to develop innovative approaches to assist families and informal caregivers of older persons as well as grandparents and older relatives who are caregivers of children.
Also, nearly $5 million in grants were awarded to 119 tribal organizations in September 2001 to provide families of Native American and Native Hawaiian elders with access to information, respite care, counseling, training, and supplemental services to help them meet their real-life caregiving challenges. This new program supporting caregivers of Native Americans received $5.5 million for Fiscal Year 2002.
The National Aging Services Network
Under the authority of the Older Americans Act, AoA works closely with the National Aging Services Network of federal, state, and local organizations to plan, coordinate, and provide home- and community-based services to meet the unique needs of older persons and their caregivers.
Who to Contact for Help
AoA supports a nationwide, toll-free information and assistance directory and Web site called the Eldercare Locator, which can connect older persons and their caregivers with the National Aging Services Network. Older persons and caregivers can call the Eldercare Locator toll-free at 1-800-677-1116 or visit www.eldercare.gov.
The U.S. Department of Health and Human Services, Administration on Aging (AoA), works with a nationwide network of organizations and service providers to make support services and resources available to older persons and their caregivers. For more information about the AoA, please contact:
U.S Department of Health and Human Services, Administration on Aging