Families are the primary source of support for older adults and people with disabilities in the U.S.
Many caregivers work and also provide care, experiencing conflicts between these competing responsibilities. Research indicates that caregiving also exacts a significant emotional, physical, and financial toll. With nearly half of all caregivers older than age 50, many are vulnerable to a decline in their own health. Studies have shown that coordinated support services can reduce caregiver depression, anxiety, and stress, and enable them to provide care longer, which avoids or delays the need for costly institutional care.
Read the 2022 National Strategy to Support Family Caregivers
ACL programs, councils, and research projects help support and empower those caring for older adults and people with disabilities:
- The National Family Caregiver Support Program funds a variety of supports that help family and informal caregivers care for older adults in their homes for as long as possible.
- The Lifespan Respite Care Program works to improve the delivery and quality of respite services for caregivers of older adults and people with disabilities.
- University Centers for Excellence in Developmental Disabilities (UCEDDs) offer a variety of resources for families and caregivers including guides, videos, webinars, and trainings. Specific services and resources available through UCEDDs may vary.
- RAISE Family Caregiving Advisory Council is charged with providing recommendations to the Secretary of HHS on effective models of family caregiving and support to family caregivers, as well as improving coordination across federal government programs. In 2021, the council released its first report to Congress. In 2022, the council collaborated with the Advisory Council to Support Grandparents Raising Grandchildren to release the National Strategy to Support Family Caregivers.
- Advisory Council to Support Grandparents Raising Grandchildren released a report to Congress in 2021 that included best practices, resources, and other useful information for grandparents and other older relatives raising children. In 2022, the council collaborated with the RAISE Family Caregiving Advisory Council to release the National Strategy to Support Family Caregivers.
- The Grandfamilies & Kinship Support Network offers technical assistance to government agencies and nonprofit organizations in states, tribes, and territories to help them collaborate and work across systemic boundaries to improve their supports and services to grandfamilies and kinship families. This network does not provide services or supports directly to grandfamilies and kinship families.
- The National Caregiver Support Collaborative (NCSC) is a multifaceted initiative to increase the recognition, support, and inclusion of family, kin, and tribal caregivers across the country, resulting in measurable improvements in the capacity of the network to assess caregiver needs, provide supportive services, collect data, and — most importantly — support the well-being of caregivers and the people receiving care.
- The National Rehabilitation Research and Training Center on Family Support partners with government, academia, and the broad family support stakeholder community to translate state-of-the-art research and training into services and support programs to improve the care, health, and quality of life of all persons with disabilities and the families who support them.
- The RESILIENCE Rehabilitation Research and Training Center’s mission is to improve the health and function of people with disabilities and their caregivers by adapting and scaling two award winning evidence-based programs for children and older adults with disabilities (Chicago Parent Program and CAPABLE) and to design new approaches using key attributes of effective and sustainable programs to ensure program effectiveness, relevance, utility, and scalability.
- Community Care Corps supports communities in developing innovative programs through which volunteers provide non-medical support to help older adults and adults with disabilities maintain their independence. Between 2019, when the program was initially funded, and 2023, Community Care Corps grants — with the help of 9,800 volunteers — provided volunteer assistance to over 24,000 older adults and adults with disabilities and more than 6,700 family caregivers.
- The Bridging the Aging and Disabilities Networks grant is a Project of National Significance that is building capacity across and within states’ aging and disability networks to create culturally competent systems to support individuals with intellectual and developmental disabilities (ID/DD) and their families across the lifespan. The National Association of Councils on Developmental Disabilities is partnering on this project with the Institute on Disability and Human Development at the University of Illinois Chicago, Lurie Institute for Disability Policy at Brandeis University, The Arc, and USAging.
- The Direct Care Workforce Strategies Center provides technical assistance to states and service providers and facilitates collaboration with stakeholders to improve the recruitment, retention, training, and professional development of members of the direct care workforce. The direct care workforce includes people with various job titles and roles, including personal care attendants, home health aides, direct support professionals, job coaches, and more.