Disabled Americans fear what Medicaid cuts could do to them

Ian Otbot, 8, does his homework in his bedroom at home in Pennsylvania on July 15, 2025, as his father, Gerry Nel Otbot, looks on. Ian relies on nurses to help with his medical stroller, feeding tube and catheter, and when they aren’t available, he can’t go to school. (Tahila Mintz/The New York Times)

By Maggie Astor

It takes round-the-clock care to keep 10-year-old June Rice alive.

Her ileostomy bag needs to be emptied multiple times a day, and the exposed end of her intestine must be inspected. Her body has to be regularly repositioned in her wheelchair so that she won’t get sores. Her saliva needs to be suctioned from her mouth to prevent aspiration, and her food and medication must be administered through a gastric tube.

June has rare diseases that affect her intestines and brain. Her parents do what they can for her, but they have jobs and two other children — they can’t do it all. What allows June to live at home, go to school and hang out with friends is a Medicaid program in Utah that provides in-home nurses, a type of benefit called home- and community-based care.

That care means she doesn’t have to live in a nursing home or other medical institution, said her mother, Courtney Demmitt-Rice.

“We would do anything to keep that from happening,” she said. “But your body can only give so much.”

Medicaid is best known as a program for low-income people, but it is also a key vehicle by which disabled Americans of varying income levels receive health care that would otherwise be prohibitively expensive. June is one of about 4.5 million Americans who depend specifically on its home- and community-based care services, which often come through specialized programs known as waivers.

That 4.5 million includes many older Americans who are on Medicare too but can’t get the home care they need through that. But it also includes many working-age adults, and about 14% of the total are 18 or younger, according to health research group KFF.

Now many of these Americans, and their families, fear the services could be at risk because of the roughly $1 trillion in federal Medicaid spending cuts to come over the next 10 years, part of the sweeping policy bill that President Donald Trump signed into law this month.

“Everyone’s just bracing for impact,” said Alison Chandra, a pediatric nurse who provides home care for June.

Federal law deems most home- and community-based services as optional, so they are often targeted when states have to tighten their belts. When temporary Great Recession increases in Medicaid funding expired in the early 2010s, for example, every state reduced home care by limiting enrollment or lowering spending on existing recipients.

The White House and congressional Republicans said people with disabilities would not be affected by the cuts; the Trump administration maintains that states can balance their budgets just by reducing hospital reimbursements for Medicaid services. Theo Merkel, a policy adviser to Trump, said claims of a threat to home care were “intentionally misleading.”

But health care experts disagree. They said that lower hospital reimbursements would be insufficient for many states, and that cuts to home- and community-based care were a real possibility.

“It’s not accurate to argue that every state can simply make up any funding gaps by cutting hospital reimbursement only,” said Dr. Benjamin Sommers, a physician and professor of health care economics at Harvard University. He called it “wishful thinking.”

Any reductions could affect disabled people’s ability to live with loved ones, go to school, hold jobs, enjoy public activities and contribute to their communities.

Health care experts anticipate cuts to home- and community-based care in some states because the new law limits provider taxes. Almost every state taxes hospitals, then uses the revenue to pay the hospitals for treating Medicaid patients. That increases Medicaid spending on paper and triggers more federal matching funds, which states use to cover various Medicaid services.

The 22 affected states where provider taxes are higher than the new law’s cap — 3.5% of net patient revenue — will lose federal money. The White House argued that this would not affect home- and community-based care because states could make up the difference by paying hospitals less for Medicaid services, reducing the rates to match those of its sister program, Medicare.

Experts said the White House’s argument was unrealistic. Not all states pay higher prices for Medicaid than for Medicare, and even for those that do, the numbers don’t add up, Sommers said. Many states will have to find money somewhere else, too, and each state will have to choose whether that somewhere is home- and community-based care or another part of their budget.

Adrianna McIntyre, an assistant professor of health policy and politics at Harvard, noted that many hospitals were going to lose revenue from other parts of the law, too, and said cutting their payments could force some to close.

The law technically allows states to expand home- and community-based care to some people who weren’t previously eligible. However, Alice Burns, a Medicaid expert at KFF, said that provision “does nothing to address the fiscal pressures states will face” from the law overall.

Reductions could come in several forms. States could place further restrictions on who qualifies for coverage, cover fewer hours of care or lower pay for home health workers. Or they could eliminate waiver programs altogether. Even at existing funding levels, hundreds of thousands of people are on waiting lists for waivers, and those lines could get longer.

Disabled adults and families of disabled children said any cuts would have a profound effect on their lives. For many, home- and community-based care is the difference between living in an institution and a life comparable to peers who don’t have a disability.

Even if the care for these children is not affected, states could cut services for new applicants. Pay reductions could also drive away home-care providers, making waiting lists for care even longer.