Note: AAPD is nonpartisan and does not support or oppose any candidate for office. We do urge individuals with disabilities and their allies to thoroughly research the candidates who will be on their ballot and consider which candidates demonstrate a commitment to prioritizing issues that are important to people with disabilities.
As Americans begin to vote , AAPD is providing information about some of those key disability issues, and relevant policy changes in those issue areas since the last presidential election.
One of the major policy priorities for the disability community is home- and community-based services (HCBS) and community integration more broadly.
Many people with disabilities rely on Medicaid for their healthcare and for services that help them live interdependently in their communities. These services, called home- and community-based services (HCBS), allow individuals to get the care they need while staying in their own homes instead of being forced to move to a nursing home or institution. HCBS can include help with everyday tasks like getting dressed and taking medication, as well as therapy and other types of support. According to the Centers for Medicare and Medicaid Services (CMS), over 7 million people get HCBS through Medicaid. In addition, these services are provided by care workers who are often people of color, many of whom have disabilities themselves. The turnover rate is high because employees work long hours, have heavy workloads, and receive low pay and benefits.
There are many barriers to accessing HCBS successfully: a persistent shortage of direct support workers, inadequate funding for services that leaves people receiving fewer hours of services than they need, and years-long waiting lists to access HCBS to name a few. More than 700,000 Americans are estimated to be stuck on HCBS waiting lists, even though they have had a doctor certify that they qualify for and would benefit from receiving care at home. Further, there are many, many more people in need of Medicaid funded HCBS who have not even been able to make a waiting list in there first place. There are many states where people with disabilities are being erroneously dropped off the Medicaid rolls and losing their HCBS as states review Medicaid eligibility after the federal Public Health Emergency was ended.
Thankfully, decades of advocacy from a movement of disability and labor activists fighting to increase access to care have paid off, and recent changes in rules and policies have made great strides toward strengthening the care economy, improving the quality and dignity of jobs in the care workforce, and increasing access to healthcare.
The Biden-Harris administration made a significant achievement by investing $40 billion in the HCBS care workforce as part of the American Rescue Plan Act. States have used these funds to recruit and train new care workers and improve pay and benefits for their existing care workers. Maine used its share of funding to pay well-deserved bonuses to provide financial stability for care workers last summer.
The Biden-Harris Centers for Medicaid and Medicare Services has also worked with disability advocates and issued several new regulations this year to strengthen access to care and services for individuals with Medicaid, improve pay for care workers, and ensure safe staffing levels for long-term care facilities.
The Managed Care Access, Finance, and Quality Rule (Managed Care Rule) ensures that people with Medicaid don’t have to wait too long to see a doctor. It sets limits on how long they should have to wait for appointments, like 15 days for regular check-ups and women’s health services and ten days for mental health and substance abuse appointments. Ensuring timely access to routine and preventive healthcare is critical for disabled people and helps prevent loss of independence, hospitalization, and even institutionalization.
The Ensuring Access to Medicaid Services Rule (Access Rule) makes it easier for people to get home- and community-based services by ensuring that the planning process is focused on the individual and their choices. States will also have to set up a system for people to complain if they have problems with their services and to report if they are being mistreated. The rule will also require that 80% of the money Medicaid pays for HCBS goes to those who provide the care rather than administrative costs or profits. Lastly, states will have to have groups of people who receive home care, the workers, and others to help decide how much Medicaid will pay for home care and how much the workers will be paid.
These investments are a big step in supporting the care workforce, but it’s just a fraction of what the disability community truly needs and what was initially promised in the Build Back Better plan. The President has proposed a $150 billion investment in HCBS over the next ten years as part of his 2025 budget proposal. AAPD and the broader disability community will be working to ensure that HCBS receives the funding it needs in any final budget enacted by Congress. We are strongly advocating for the passage of the HCBS Access Act, which establishes mandatory funding for HCBS, eliminates waiting lists, and expands access across states.
This election will have significant consequences for the future of HCBS and access to care. Vice President Kamala Harris has proposed a comprehensive plan that would expand access to Medicaid to give more people Medicaid-covered access to care at home. Former president Donald Trump recently expressed support for a tax credit for family caregivers. This article from the Kaiser Family Foundation can help you better understand the different candidates’ plans for access to care.
Project 2025, a 900-page governing agenda put forth by the Heritage Foundation as a blueprint for a new administration, threatens cuts to Medicaid funding, work requirements and time limits for Medicaid, and guts funding for Home- and Community-based Services, which would add to the more than 700,000 people on the waiting list for care and services necessary for them to live independently, forcing many into nursing homes and other congregate care settings against their will.
Have you voted yet? Be sure to check out AAPD’s state guides for information on accessible voting, and make a plan to vote on or before November 5, 2024.