More than 20% of Americans serve as caregivers, representing all socioeconomic backgrounds, ethnicities, religions, and ages. Caregivers experience disproportionate physical, mental, and financial strain as a result of their caregiving responsibilities and have historically been under-represented and underserved in federal policy and program design. Everyone will need some level of caregiving during their lifetime, but none more than individuals with serious illnesses. People with serious illnesses require significantly more attention than those with less severe conditions, which often comes at the cost of the caregiver’s health and well-being.
The consistent advocacy of C-TAC, the National Alliance for Caregiving, AARP, and other stakeholders, have led federal officials and legislators to address to caregiver needs. The 2018 RAISE Family Caregivers Act, the 2022 National Strategy to Support Family Caregivers, and President Biden’s 2023 executive order have all called for increased support for caregivers. In addition, members of the 118th Congress have also introduced numerous pieces of legislation addressing a wide range of challenges facing caregivers. Here is recent proposed legislation.
- Senator Tim Kaine (D-VA) introduced the Supporting Our Direct Care Workforce and Family Caregivers Act. The legislation, introduced in April of last year, would require the U.S. Department of Health and Human Services to set up a national technical assistance center and grant program to support the direct care workforce and family caregivers.
- Senator Michael Bennet (D-CO) introduced the Credit for Caring Act of 2024 to provide a nonrefundable tax credit for working caregivers.
- Representative Debbie Dingell (D-6th, MI) and Senator Bob Casey (D-PA) introduced the HCBS Access Act would expand coverage of home- and community-based services (HCBS) under Medicaid. The bill also compels the Administration for Community Living to establish a technical assistance center and award grants to government, nonprofits, educational entities, and relevant employers to support training, recruitment, and retention of direct support professionals.
- Senators Shelley Moore Capito (R-WV) and Ed Markey (D-MA) introduced the Alleviating Barriers for Caregivers (ABC) Act, S. 3109, legislation that would require the require the Centers for Medicare & Medicaid Services (CMS) and the Social Security Administration (SSA) to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs.
Several other bills have been introduced to supplement needs of caregivers that focus on a variety of topics, such as increasing outreach and education to caregivers, structural changes to provide grant opportunities from federal entities, and an increase in data collection regarding caregiver activities. These caregiver bills are unlikely to become law as standalone pieces, but if they are incorporated into a larger package there is a much higher chance of giving caregivers the support they need. For example, Congress is working on the reauthorization of the Older Americans Act and some of the proposals may be considered as part of that effort. C-TAC will continue to look for opportunities to engage with our members and other partners to ensure that those caring for individuals with serious illness receive the supports and services they need.
