Current Federal Programs To Support Family Caregivers
There are several federal programs that currently provide support and/or services to family caregivers. They are authorized and administered by a variety of federal agencies and authorities. The major programs are discussed below:
Older Americans Act Caregiving Programs
The National Family Caregiver Support Program (NFCSP) provides grants to states to fund a range of supports for family caregivers, defined as family members or other informal caregivers providing care to individuals age 60 and older, individuals of any age with Alzheimer’s disease, older relatives (like grandparents) providing care to children under 18, and parents and other family age 55 and older providing care to adults with disabilities. The program is authorized under the Older Americans Act (OAA) and administered by the Administration for Community Living (ACL).
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States often subcontract with Area Agencies on Aging, Aging and Disability Resource Centers, and other local community service providers to provide family caregivers with an array of services and supports including: information and referral to local services such as in-home care, respite care, caregiver training, support groups, transportation, meals and more. States may set priorities for certain caregiver groups (e.g., low-income, rural, or minority populations) or can serve a broad population, depending on the availability of both public and voluntary funds. The goal of these programs is to sustain family caregivers’ ability to provide care, reduce caregiver stress and burnout, and enable their loved one to receive care at home for as long as possible.
Under the Older Americans Act (OAA), funding is also available to support research, training, and technical assistance to better understand best practices for supporting family caregivers and to fund projects of national significance. One example is the Community Care Corps initiative that supports volunteers to assist family caregivers with help with routine tasks such as errands, companionship, and more. The appropriation for NFCSP for Fiscal Year 2025 was $205 million.
Lifespan Respite Care Program
The Lifespan Respite Care Program provides grants to states to develop and enhance respite care systems to support family caregivers of children and adults across all age groups, disabilities, and chronic conditions. The Lifespan Respite Care Program is authorized under the Public Health Services Act and administered by ACL. The appropriation for the Lifespan Respite Care Program for Fiscal Year 2025 was $10 million.
Department of Veterans Affairs Caregiver Programs
The primary caregiver support program for veterans is the VA Caregiver Support Program (CSP), administered by the Department of Veterans Affairs (VA). The CSP includes two programs: the Program of General Caregiver Support Services (PGCSS) and the Program of Comprehensive Assistance for Family Caregivers (PCAFC). Under the PGCSS, support for caregivers includes skills training, support groups, and respite care. Under the PCAFC, caregivers can receive a monthly stipend for providing care, as well as access to health insurance, legal and financial planning support, respite care, and more. Eligible caregivers do not have to be family members.
Developmental Disabilities Act
The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) funds several programs that provide services and supports to people with intellectual and developmental disabilities (I/DD) and their families. The DD Act programs are implemented by ACL. State Protection and Advocacy Systems aid people with I/DD and their families in accessing services, including supports for family caregivers. State Councils on Developmental Disabilities conduct outreach and education to people with I/DD and their families about available supports, including for family caregivers. University Centers on Excellence in Developmental Disabilities may provide training and other support for family caregivers. Projects of National Significance funded under the DD Act include several focused on supporting aging caregivers of people with I/DD. Finally, the DD Act also authorizes a family support grant program to states, although Congress has yet to appropriate funding for the program. The appropriation for DD Act programs in Fiscal Year 2025 was approximately $181 million.
Medicaid
While Medicaid is the primary funder of formal, paid LTSS to older adults and people with disabilities, it does not generally provide supports to family caregivers. The major exception is that Medicaid home and community-based services (HCBS) programs typically cover respite care so that family caregivers can get a break from their caregiving responsibilities. In addition, many states’ HCBS programs allow family members to be hired as paid caregivers to provide services to their family members through a self-directed model of care. A recent KFF report found that, as of 2024, forty-seven states and the District of Columbia allow some form of payment to family caregivers providing help with activities of daily living, subject to both federal and state rules and regulations. In general, while other family members can be paid as caregivers, some states exclude spouses and other “legally responsible individuals.”
Medicare
Until recently, Medicare did not include any support for family caregivers. In 2024, Medicare added a family caregiver training benefit; it pays health care providers for the time they spend training family caregivers to carry out medically necessary tasks on behalf of their family member, such as how to safely transfer someone from a bed to a chair, fundamentals of medication management, behavior management for someone with cognitive impairment, wound care, and more. In addition, the CMS Innovation Center operates the voluntary, nationwide Guiding an Improved Dementia Experience (GUIDE) Model, which provides coordinated services and supports for people with dementia and their caregivers. The model includes caregiver education and training, support services, care navigation, and respite services for eligible participants.
Family and Medical Leave Act
The Family Medicaid Leave Act (FMLA) is a federal law that provides eligible employees of covered employers with up to 12 workweeks of job-protected leave each year for certain family and medical reasons, including caring for a spouse, child, or parent with a serious health condition. FMLA leave may be unpaid.
To be eligible, employees generally must have worked for their employer for at least 12 months, completed at least 1,250 hours of service during the previous 12 months, and work at a location where the employer has at least 50 employees within 75 miles. The U.S. Department of Labor administers and enforces the FMLA.