Physically and mentally demanding. Limited resources. Medicaid payments that are lower than earnings from other work.

These are just a few of the findings from a new survey from KFF on the experiences of direct care workers and family caregivers of Medicaid-supported Home- and Community-Based Services (HCBS).

Released just before the election that puts Donald Trump back into the White House for a second term, the survey comes at a critical time. The GOP will have a firm grip on a legislative branch with little interest in going up against Trump, smoothing the way for an agenda that seemingly will work against efforts to help vulnerable populations.

KFF notes that during his first term, Trump “supported unsuccessful efforts to repeal and replace the ACA, including the Medicaid expansion, and proposed restructuring Medicaid financing into a block grant or a per capita cap as well as limiting Medicaid eligibility and benefits. These proposals, included in Trump budget plans as president, were estimated to reduce federal Medicaid spending by roughly $1 trillion over 10 years.”

Eric Buehlmann, deputy executive director for public policy at the National Disability Rights Network, told Disability Scoop that “based on actions taken during the first Trump administration, we are concerned with what [the] election will mean to the funding and structure of many important programs for people with disabilities like Medicaid, [Individuals with Disabilities Education Act] funding, enforcement of civil rights laws, among others.”

Here are some of KFF’s survey key points:

• Parents with children who are medically complex or have significant physical, mental, or intellectual disabilities are often required to provide what the Centers for Medicare & Medicaid Services (CMS) describes as “extraordinary care [which can be necessary] for children to avoid being placed in an institution.
• Parents shared fears about what caring for their children would look like in the future, especially as the parents themselves aged.
• Many started caregiving because they were the only person available to help.
• Some participants have difficulties balancing work with other responsibilities, especially to their own families.
• They also described difficulties balancing caregiving responsibilities with self-care.
• Many family caregivers did not have paid caregiving help.
• Most caregivers thought that higher wages would require additional Medicaid funding, but some caregivers reported that they felt a higher share of Medicaid spending could go to wages for direct care workers.

KFF reports that “a recently finalized rule under the Biden-Harris Administration aims to address the latter issue: Starting in 2028, states will be required to ensure that at least 80% of Medicaid payments for personal care, homemaker, habilitation, and home health aide services go to compensation for direct care workers.”

Read the full survey, Experiences of Direct Care Workers and Family Caregivers of Home- and Community-Based Services (HCBS), for more details.