Family caregivers provide $600 billion in unpaid care every year
Washington (March 31, 2025) – Senator Edward J. Markey (D-Mass.), Ranking Member of the Health, Education, Labor, and Pensions (HELP) Subcommittee on Primary Health and Retirement Security, Senator Shelley Moore Capito (R-W.V.), and Representatives Seth Magaziner (RI-02), and Kat Cammack (FL-03) today reintroduced the Alleviating Barriers for Caregivers (ABC) Act, legislation that would require the Centers for Medicare and Medicaid Services (CMS), Social Security Administration (SSA), and Children’s Health Insurance Program (CHIP) to review their eligibility, processes, procedures, forms, and communications to reduce the administrative burden on family caregivers. The legislation would then require CMS, SSA, and CHIP to report to Congress after two years about any issues they are facing and any next steps they are taking to support family caregivers.
Family caregivers serve as a primary source of support for seniors and people with disabilities of all ages. In the United States alone, there are more than 48 million family caregivers. More than half of family caregivers act as an advocate for their loved one with care providers, community services, or government agencies. However, one in four family caregivers say they want help with forms, paperwork, and eligibility for services. Many report competing responsibilities while experiencing serious emotional, physical, and finance challenges.
“Caregivers, like my father was, serve on the frontlines of our nation’s health care system by giving our families and friends the care and support they need to remain in their homes and communities with their loved ones,” said Senator Markey. “But caregivers are struggling needlessly to navigate complex, burdensome, and stressful processes each and every day while also still managing day-to-day family and professional responsibilities. The Alleviating Barriers for Caregivers Act will help lift the weight off caregivers by clearing the red tape that so often gets in their way. I thank Senator Capito and Representatives Magaziner and Cammack for their partnership on this critical legislation.”
“More than 1 in 4 Americans over 50 are now caregivers. I was one of these caregivers for my parents during their struggle with Alzheimer’s disease and know personally how hard it can be to balance all of the responsibilities put on individuals caring for their loved ones,” Senator Capito said. “One of the most common frustrations I hear from caregivers in West Virginia is how difficult it is to navigate federal processes and procedures. The Alleviating Barriers for Caregivers Act would attempt to ease this often-stressful time by requiring federal agencies, such as the Centers for Medicare and Medicaid Services and Social Security Administration, to review their processes, procedures, forms, and communications to reduce the administrative burden on family caregivers.”
“Family caregivers have a lot on their plates, devoting their lives to support others,” said Representative Magaziner. “They shouldn’t have to struggle with confusing paperwork and delays on top of their essential work. The bipartisan ABC Act will make it easier for families to get the support they need so caregivers can focus on what matters most — caring for their loved ones.”
“America’s family caregivers work around-the-clock to provide essential care for their loved ones, and over half act as advocates on behalf of their family members. The last thing these caregivers need is more red tape that distracts from their support for those in their care,” said Representative Cammack. “I’m honored to introduce this bipartisan and bicameral ABC Act with my colleagues to lower the burden around the important medical decisions caregivers must make every day. Together we can support the 48 million caregivers that make up a critical part of our health care landscape in the U.S.”
Cosponsors in the Senate include John Hickenlooper (D-Colo.), Cindy Hyde-Smith (R-Miss.), Richard Blumenthal (D-Conn.), Thom Tillis (R-N.C.), Amy Klobuchar (D-Minn.), Rick Scott (R-Fla.), Tammy Baldwin (D-Wisc.), Cynthia Lummis (R-Wyo.), Mark Kelly (D-Ariz.), Katie Britt (R-Ala.), Mazie Hirono (D-Hawaii), Mike Rounds (R-S.D.), Sheldon Whitehouse (D-R.I.), Bill Cassidy (R-La.), Chris Coons (D-Del.), and Eric Schmitt (R-Mo.).
Cosponsors in the House include Jimmy Panetta (CA-19), Jeff Van Drew (NJ-02), Steve Cohen (TN-09), Nick Langworthy (NY-23), Sharice Davids (KS-03), Rob Wittman (VA-01), Josh Gottheimer (NJ-05), Jen Kiggans (VA-02), Jared Golden (ME-02), Greg Steube (FL-17), Deborah Ross (NC-02), August Pfluger (TX-11), Ed Case (HI-01), Nicole Malliotakis (NY-11), Debbie Wasserman Schultz (FL-25), Mike Lawler (NY-17), Darren Soto (FL-09), and Vern Buchanan (FL-16).
The ABC Act is endorsed by: AARP, ADA Watch/Coalition for Disability Rights & Justice, Aging Life Care Association, Alliance for Aging Research, Alliance for Retired Americans, Allies for Independence, ALS Association, Alzheimer’s Foundation of America, American Academy of Nursing, American Association on Health and Disability, American Heart Association, American Network of Community Organizations and Resources (ANCOR), American Psychological Association Services, American Society for Transportation and Cellular Therapy, American Society on Aging, Association for Frontotemporal Degeneration, Association of University Centers on Disabilities, Autism Society of America, Autism Speaks, Caregiver Action Network, Caring Across Generations, Child Neurology Foundation, Christopher & Dana Reeve Foundation, Davis Phinney Foundation for Parkinson’s, Disability Rights Education and Defense Fund (DREDF), Diverse Elders Coalition, Elder Services of Berkshire County Inc., Elizabeth Dole Foundation, Family Caregiver Alliance, National Center on Caregiving, Fight Colorectal Cancer, Gerontological Society of America, Grayce, Greater Lynn Senior Services, Hispanic Federation, Huntington’s Disease Society of America, Japanese American Citizens League, Justice in Aging, Lakeshore Foundation, LeadingAge, LifePath, Lymphoma Research Foundation, Massachusetts Councils on Aging, Medical Alley, Mystic Valley Elder Services, National Academy of Elder Law Attorneys, National Adult Day Services Association, National Alliance on Caregiving, National Asian Pacific Center on Aging (NAPCA), National Association of Councils on Developmental Disabilities, National Council on Aging, National Committee to Preserve Social Security and Medicare, National Disability Rights Network, National Down Syndrome Congress, National Federation of Filipino American Associations, National Fragile X Foundation, National Health Council, National Partnership for Healthcare and Hospice Innovation, National Patient Advocate Foundation, National Respite Coalition, NMDP, OCA- Asian Pacific American Advocates, Paralyzed Veterans of America, Rosalynn Carter Institute for Caregivers, Senior Connection, Somerville-Cambridge Elder Services, Southeast Asian Resource Action Center (SEARAC), Speak Foundation, the Arc of the United States, The ERISA Industry Committee, The Michael J. Fox Foundation for Parkinson’s Research, Third Way, USAging, Village to Village Network, and Well Spouse Association.
“Family caregivers are the backbone of our nation’s long-term care system, and they are overwhelmed managing their loved ones’ care,” said AARP Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “This bill would help alleviate bureaucratic red tape for family caregivers. AARP urges Congress to swiftly pass this important legislation.”
“Millions of Americans struggle to care for loved ones while also navigating the red tape of Medicare, Medicaid, and Social Security. The Alleviating Barriers for Caregivers (ABC) Act will cut through that red tape, making it easier for families to access these vital programs. This means caregivers can spend less time fighting paperwork and more time providing essential care and taking care of themselves,” said Jason Resendez, President & CEO of the National Alliance for Caregiving.
“Family caregivers provide over $600 billion in care each year, greatly benefiting the system and the person needing care, but are overburdened by navigating the health care system and all the paperwork that comes with it. Simplifying these processes improve the caregiver’s well-being, allow them more quality time with the person they care for, and could improve coordination with health and benefits systems,” said Christina Irving, Client Services Director at Family Caregiver Alliance.
“Caregiver Action Network (CAN) strongly supports the Alleviating Barriers for Caregivers Act. CAN’s mission is to improve the quality of life for tens of millions of family caregivers, and this Act could help reduce their stress by making it easier to access the resources and information they need while caring for their loved ones,” said Marvell Adams Jr., CEO of Caregiver Action Network.
“USAging is proud to support the Alleviating Barriers for Caregivers Act, a vital step in recognizing the selfless contributions of caregivers by addressing the challenges they face when providing care to their loved ones. This bill will help reduce stress and time spent helping loved ones access important benefits, supporting the overall well-being of caregivers. With the numbers of older Americans rising at a historic rate, family caregivers need more support, and they need it now,” said Sandy Markwood, CEO of USAging.
“As an organization founded by a family caregiver, the Alzheimer’s Foundation of America (AFA) is pleased to support the Alleviating Barriers for Caregivers Act. Caring for a loved one with dementia is a 24/7 responsibility, and it becomes even more stressful trying to navigate the complexities of accessing benefits. Cutting administrative red tape and making it easier for caregivers to connect with programs, services, and assistance would alleviate a major stressor and expedite vital support to caregivers. AFA is grateful to Sen. Markey, Sen. Capito, Rep. Cammack, Rep. Magaziner, and all who support this legislation in Congress for working together to help family caregivers,” said Charles J. Fuschillo, Jr., President & CEO of the Alzheimer’s Foundation of America.
“Caregivers of the Autism community frequently reach out to the Autism Society’s helpline, citing the complex navigation of critical services like Medicaid and Social Security as major obstacles to receiving care. The ABC Act would reduce this burden, allowing caregivers to focus on what matters most — supporting their loved ones,” said Christopher Banks, President and CEO of the Autism Society of America.
“Helping older adults understand and complete documents for caregiver support is not only the right thing to do from a community perspective, but it is also significantly more cost-effective. Leveraging caregiver support avoids or delays more expensive long-term care options, such as nursing homes or assisted living facilities,” said Bill Zagorski, Board Chair for the National Adult Day Services Association. “Moreover, Adult Day Services play a significant role to caregivers. It assists with access to and reduces barriers to these vital programs as well as providing caregiver respite in order to allow aging adults, seniors and individuals with cognitive, physical, intellectual and/or developmental disabilities to age in place in their communities.”
“Caregivers are the true backbone of our nation, offering unwavering support to those in need and often sacrificing their own well-being in the process. By supporting caregivers through this act, we are taking a vital step toward providing the long-overdue assistance they so desperately need. This legislation will help to alleviate the administrative burdens that many caregivers face on a daily basis, making their challenging roles more manageable. By reducing the overwhelming paperwork, navigating complex systems, and offering additional resources, we can ensure caregivers are able to focus more on the well-being of their loved ones, while receiving the support they need. This step is essential in recognizing and honoring the incredible work that caregivers do and ensuring they are equipped with the tools necessary to continue providing care with dignity and compassion,” said Elizabeth ‘Betsy’ Connell, Executive Director of Massachusetts Association of Councils on Aging (MCOA).
In July 2024, Senator Markey celebrated the Senate Health, Education, Labor and Pensions Committee passage of his caregiving and Alzheimer’s provisions in the Older Americans Act Reauthorization Act of 2024. Earlier that month, Senator Markey announced his “Caring for Caregivers” agenda, a comprehensive legislative agenda which calls for the economic security, support and resources, and protection and promotion of family caregivers and their loved ones’ health and wellbeing. In June 2024, Senator Markey introduced the Elder Pride Act, legislation to establish an Office of LGBTQI Inclusion within the Department of Health and Human Services to advocate, coordinate activities, recommend policies for, and collect data on LGBTQI+ older adults.
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