Millions of Americans require long-term services and supports for help with self-care tasks because of aging, chronic illness, or disability. These can include home health aide services, nursing facility care, adult daycare programs, transportation, and assistance provided by family caregivers. The COVID-19 pandemic brought long-term care into focus; nursing homes experienced elevated death rates as well as issues of neglect, social isolation, and loneliness. These challenges prompted increased investment in home- and community-based services — the American Rescue Plan Act of 2021 (ARPA) provided states with an essential source of funding to transform care settings and enhance long-term care options.
States are also grappling with an employment crisis within the long-term direct care workforce that includes issues of providing adequate compensation, offering training and career advancement opportunities, and ensuring that recruiting efforts aspire for diversity while also recognizing longstanding societal disadvantages and inequities. Today’s direct care workforce is 87 percent women, 61 percent people of color, and 27 percent immigrants.
The Commonwealth Fund partnered with The Council of State Governments to create a long-term care policy guide and case studies that highlight strategies to respond to challenges and transform long-term care. The guide was informed by discussions with state legislators and executive branch officials in Arizona, Georgia, Hawaii, Indiana, Minnesota, New York, Pennsylvania, and Virginia in three areas:
- Addressing state regulation of long-term services and supports. Congregate care settings such as nursing homes saw high concentrations of fatalities during the COVID-19 pandemic. This prompted renewed calls to reimagine these facilities and invest more in community-based alternatives, which can include adult day services and home-delivered meal providers.
But congregate care settings will continue to play an essential role in the future of long-term care. States are starting to strengthen long underresourced long-term care ombudsman programs to provide more oversight of facilities and stronger advocacy for residents. These programs are working to address staffing shortages in a variety of ways and improve data collection on quality of care. For example, in 2022, Illinois approved legislation to overhaul how it assesses and reimburses nursing facilities and link future funding to staffing levels and quality of care.
- Optimizing ARPA funding for home- and community-based services. ARPA provided states with an increase in Medicaid funding to strengthen home- and community-based services. States have until 2025 to spend $12.7 billion on initiatives to expand eligibility and increase access. States are using the funding to invest in provider and workforce supports (e.g., increasing reimbursement rates, providing recruitment bonuses), quality improvement (e.g., data collection initiatives, public-facing dashboards), housing programs (e.g., case management teams to address homelessness), community transition (e.g., supports for people transitioning from institution-based care to community-based settings), and supports for family caregivers (e.g., respite services, which provide temporary relief for primary caregivers). They also are identifying strategies to ensure that initiatives will be sustainable over time. In Minnesota, policymakers agreed to spread $680 million across more than 50 initiatives in five categories.
- Revitalizing the direct care workforce and supporting family caregivers. The direct care workforce is facing significant challenges. Difficult work, low-level compensation, and a lack of career advancement opportunities make it difficult to keep facilities staffed and can limit recruiting efforts. Some states are taking steps to increase wages, offer employment supports such as transportation or childcare, enhance training, facilitate career advancement, and expand the employee pipeline. In New York, lawmakers passed a $20 billion, multiyear health care investment in 2022 that included $7.7 billion to increase the hourly minimum wage for home health care workers.
Participants in the discussions highlighted the need for improved data collection — on the volume, stability, and compensation of the direct care workforce; quality of nursing home care; or the care provided in home- and community-based settings. More data can help policymakers assess efficiencies and inequities across programs and calculate the return on investments. It also can help consumers and their families make informed choices. To be useful, data must be accurate, collected in a consistent and timely manner, compiled in an easy-to-understand format, centered on the needs of residents in long-term care settings, and regularly acted upon by decision-makers.
State governments have begun to explore numerous strategies to reshape and redefine long-term care, reconfiguring it for a postpandemic age with a well-trained, adequately compensated workforce to provide essential care. The long-term care policy guide provides a roadmap for states, taking into account the lessons of the pandemic and helping them prepare for transformative changes that can ensure a healthier future for older Americans and people with disabilities.