Dingell, Colleagues Introduce Bills to Strengthen Home Care Access

Today, U.S. Representative Debbie Dingell introduced the Home and Community-Based Services (HCBS) Access Act and the Long-Term Care Workforce Support Act, two separate pieces of legislation to strengthen home care access and the caregiving workforce.

Home and Community-Based Services (HCBS) Access Act

In addition to Congresswoman Dingell, the HCBS Access Act is co-led by U.S. Representative Jan Schakowsky (D-IL-09).

"We know that the majority of individuals who require long-term care would prefer to receive it in their own homes and communities. No one should have to wait years to get the care they deserve, and no care worker should have to live below the poverty line to give this care," said Congresswoman Dingell."Medicaid is the single largest payer of long-term care in our country. At a time when Medicaid is facing unprecedented, historic cuts, it's more important than ever that we prioritize home and community-based services. This is the less expensive option for both families and the federal government, but the people who don't want us to improve the system are the corporations profiting while Americans struggle. This legislation will provide much-needed investment in our care workforce, making it easier for those who need care to get it, and supporting the caregivers doing this crucial work."

"Older adults and people with disabilities deserve to live with dignity and age in place. Yet the United States still lacks a comprehensive long-term care policy that meets the needs of our most vulnerable communities. Medicaid Home- and Community-Based Services help fill this gap, ensuring millions of Americans can remain independent in their homes and communities," said Congresswoman Jan Schakowsky. "I am proud to join my colleague Congresswoman Dingell in introducing this legislation to strengthen our nation's care infrastructure by expanding access to Medicaid home care, investing in the direct care workforce, and supporting family caregivers. It's time to move beyond discussion and deliver real national solutions to the caregiving crisis."

The problem

Many older adults and people with disabilities who need help with daily activities such as eating, dressing, traveling to work or school, and managing finances, are eligible for Medicaid long-term services and supports (LTSS) to support their everyday needs. These beneficiaries have immediate access to nursing homes or other institutional settings. But if they want to remain in their homes with the help of Medicaid Home and Community-Based Services (HCBS), they are often put on a waiting list and can wait years or even decades for services and support. Medicaid policy has always paid for nursing home and other institutional care for those eligible for LTSS but will not pay for home and community-based services unless a waiver has been granted. This bill would put both options on equal footing and give families an equal choice between home and community care or institutional care.

This current system fails to meet the needs of millions of older adults and people with disabilities. While many people want to live in their own homes and communities, they may be forced to live in an institutional setting just to access the services they need. As the 1999 Supreme Court Olmstead decision stated, everyone-no matter their disability-has the right to receive services in their community and to live in their own home.

The solution

The HCBS Access Act is designed to ensure eligible older adults and people with disabilities have a real choice of care and support options between home care and institutional care. The bill would, over time, eliminate HCBS waiting lists and the need for states to repeatedly apply for HCBS waivers. Specifically, the bill would:

• Increase Medicaid funding for home and community-based services;

• Increase the federal match for state funding to expand their capacity to meet the needs of people who prefer HCBS;

• Make steps to improve the stability, availability, and quality of direct care providers to help address the decades-long workforce shortage crisis;

• Provide states with resources so that caregiving workers-who are disproportionately women of color-have stable, quality jobs and a living wage;

• Provide training and support for family caregivers; and

• Create better evaluation measures to assess the quality of HCBS being provided.

The legislation is endorsed by the American Federation of State, County and Municipal Employees (ASFCME), Justice in Aging, the National Health Law Program (NHeLP), the Service Employees International Union (SEIU), Little Lobbyists, Partnership for Inclusive Disaster Strategies, Partnership for Inclusive Disaster Strategies, American Network of Community Options and Resources (ANCOR), ADAPT, and PHI.

Long-Term Care Workforce Support Act

In addition to Congresswoman Dingell, the Long-Term Care Workforce Support Act is co-led by U.S. Representative Doris Matsui (D-CA-07).

"Caregiving is the foundation of our economy. It allows for all other work to be possible. No care worker should have to live below the poverty line to do this work that millions of Americans depend on. As many know, this is deeply personal for me - I was lucky to have my husband John receive care at home, but many others do not have the same opportunity," said Congresswoman Dingell. "This legislation will make much needed investments in our care infrastructure and workforce, including family caregivers, to ensure they have the support they need, are paid a living wage, and are able to continue doing their critical jobs."

"Every day, caregivers show up with compassion, skill, and devotion for the people and families who depend on them," said Congresswoman Matsui."Yet too many of these essential workers do not receive the pay or support they deserve. I have always believed caregivers should be treated with the dignity and respect they give to others, and the Long-Term Care Workforce Support Act moves us closer to that goal. By investing in this workforce, we can also strengthen care for older adults and people with disabilities, support families, and build a stronger, more stable economy for everyone."

The problem

As the number of older adults and people with disabilities continue to increase in the country, the number of direct care professionals - including personal care aides, home health aides, direct support professionals, and many others - will also need to increase. The five million direct care professionals currently employed provide services to people living in their homes, in group homes, assisted living facilities, nursing homes, intermediate care facilities and other long-term care settings. Studies also estimate that, by 2031, 9.3 million direct care professionals will be required to meet the caregiving demands of older adults and people with disabilities.

Ninety-two percent of nursing home respondents and nearly 70 percent of assisted living facilities surveyed report significant or severe workforce shortages. In 2022, a survey of nursing homes showed more than 50% of the facilities were limiting the number of new admissions due to staffing vacancies or shortages. Another recent survey of home and community-based services (HCBS) providers showed all 50 states experiencing home care worker shortages, and 43 states reported that some HCBS providers have closed due to worker shortages.

In 2022, the median hourly wage for all direct care professionals was $15.43, with home care aides earning $14.51. One in eight direct care professionals live in poverty, 75% earn less than the average living wage in their state, and 46% rely on public assistance, such as Medicaid, food assistance, or supplemental benefits. In addition to low wages, these workers report high levels of burnout and professional fatigue due to the daily physical and emotional demands of their jobs, lack of respect for the care that they provide, and health and emotional effects from battling the COVID-19 pandemic. Most direct care professionals are women, immigrants, and people of color, further perpetuating racial, gender, and economic inequalities.

The solution

Stabilizing, growing, and supporting the direct care professional workforce is essential to ensuring a strong, qualified pipeline of workers to provide needed services to older adults and people with disabilities. Ensuring that direct care professionals are fairly compensated and protected will also benefit them, their families, and their communities.

Specifically, the Long-Term Care Workforce Support Act will:

• Increase the number of direct care professionals, including in rural communities;

• Provide pathways to enter and be supported in the workforce for women, people of color, and people with disabilities;

• Improve compensation for direct care professionals to reduce vacancies and turnover;

• Ensure that the direct care professionals are treated with respect, provided with a safe working environment, protected from exploitation, and provided fair compensation;

• Improve access and quality of long-term care for families;

• Document the need for long-term care, identify effective recruitment and training strategies, and promote practices that help retain direct care professionals.

• Strengthen the direct care professional workforce in order to support the 53,000,000 unpaid family caregivers who are providing complex services to their loved ones in the home and across long-term care settings.