Mother Jones illustration; Denver Post/Getty; Evan Vucci/AP
In August 1981, then-President Ronald Reagan signed a bill into law that allowed the development of state-level programs to help disabled people live outside institutions like nursing homes. Known as Home and Community-Based Services (HCBS) waivers, the programs—now in their fourth decade—are funded by Medicaid and run by each individual state. With potential cuts to Medicaid a priority for the Trump administration, the future of HCBS remains in limbo. Donald Trump’s recently confirmed Treasury Secretary Scott Bessent has refused to directly answer questions about whether he’d fall in line with attacks fielded by Republican politicians and Project 2025 by offering a recommendation to cut Medicaid.
Reagan couldn’t be described as an advocate for disabled people’s rights—just over a year into his first term, 130,500 people had already been dropped from Social Security Disability Insurance, then and now a lifeline for millions. Like Donald Trump, Reagan wanted to slash government spending at the expense of Americans’ wellbeing. But while the politics of the time forced Reagan’s GOP to field a compromise with some benefits for disabled people—which yielded HCBS—the Trump White House hopes to gut even that, leaving hundreds of thousands of people, if not millions, without the option of community care.
4.5 million people rely on Medicaid HCBS to avoid institutionalization.
Today, roughly 4.5 million people use Medicaid-funded HCBS as an alternative to institutionalization; the waivers help pay for home healthcare workers, durable medical equipment, career coaching, case management and other services. No one claims that the program is perfect—but most criticism has come on the basis of shortfalls, not overspending. More than half a million disabled people remain on waitlists for HCBS, often waiting years for a waiver, and inconsistent requirements across states can make the process confusing and challenging.
“It’s a bit of a mix between racism and ableism that believes that certain types of people are undeserving of assistance,” said Mia Ives-Rublee, senior director of the Center for American Progress’ disability justice initiatives, of ongoing attacks on Medicaid.
Ives-Rublee said that Project 2025 includes a push to end Medicaid exception waivers—programs that allow states to modify and add to standard Medicaid services, which “specifically implies HCBS funding”—on the grounds that the government is spending too much money on them.
About half of disabled children in the United States currently rely on Medicaid, says Jenny McLelland, director of HCBS policy for Little Lobbyists, an organization that advocates for kids with complex health needs. That includes McLelland’s son James, who spent the first year of his life in an institution; the private insurance McLelland’s family then had, like many plans, did not cover long-term home-based care. Only a Medicaid waiver allowed him to go home.
McLelland’s HCBS waiver “pays for a nurse who manages his ventilator and breathing while he’s asleep or while we are away from the house to work,” she said. “Medicaid home and community-based services make it possible for my son to have an integrated, joyful life,” taking part in school theater and bringing home straight-A grades.
Cuts will “result in more people either ending up in institutions or ending up dead,” one expert says.
Advocates are worried about the fate of HCBS, which would be relatively easy for states to abandon under the new administration—and which helps millions of people stay out of hospitals, nursing homes, and group homes, which McLelland says frequently deliver “lower-quality care, often at a higher cost.”
The GOP has put forth several proposals promoting Medicaid per-capita spending, which would change current spending practices by limiting funds through a formula that doesn’t take into consideration the needs of disabled people. Nicole Jorwic, Caring Across Generations‘ chief of advocacy and campaigns, said that what such changes “would ultimately do is cut the amount of money that the federal government is sending to states per person…just on the consumer price index.”
Changes to Medicaid per-capita spending, Jorwic says, “means waiting lists would grow” and that “the types of services being offered are going to narrow” as funding is reduced or withdrawn. Given that federal Medicaid funds already make up, on average, one-third of state budgets, Jorwic believes that state governments coughing up the extra cost “is never going to happen.” She notes that health funding is a popular target even in blue states like Maryland, where a $3 billion state funding shortfall has put hundreds of millions of dollars in funding for its human services department funds—where Medicaid is housed—on the chopping block.
Another attack on Medicaid incorporated into Project 2025 has involved lifetime caps on the support of people on Medicaid—caps that many disabled people may hit at a young age. “A state will have to take up the rest of that spending,” said Ives-Rublee, “or they will reduce the coverage of an individual, either by saying we won’t cover these services or by saying we won’t cover you at all.”
McLelland is also concerned that attacks on the Affordable Care Act could lead to further damage: disabled people who qualify for Medicaid only due to ACA expansions could be kicked off HCBS as a result. There’s “no ethical way” to deprive people of Medicaid, McLelland says.
An ulterior motivation for Republicans’ push to cut Medicaid, Jorwic says, is the Trump administration’s need to cut costs in order to finance an extension—or expansion—of Trump’s first-term tax cuts for the richest Americans and corporations, which Jorwic finds “even more upsetting and ableist.”
Ives-Rublee also foresees bleak outcomes if HCBS waivers are defunded or dropped: “That’s going to result in more people either ending up in institutions or ending up dead.”
