By now, when Shannon Rosa hears about cuts to Medicaid and misinformation from the Trump administration about disabled people and their families, her predominant feeling isn’t fear or sadness.
It’s fury.
“They don’t have any idea what they’re talking about,” she said. “I think they are very successful men who have never in their lives had to even consider what invisible labor looks like. They have no idea. They don’t know anything.”
The Trump administration announced last month that it would hold back $867m in Medicaid funding for California, joining an earlier halt of $1.34bn – totaling $2.2bn in withheld payments to the state. Officials are also holding on to a total of $550m in Medicaid funding for Minnesota from the past three quarters.
The amounts would cover services already paid by the states, for which the federal government normally partly reimburses them – creating a budgetary strain for the states, which have continued to cover Medicaid services despite the federal halt.
“We suspect much of the questionable spending involves in-home services,” said Robert F Kennedy Jr, the secretary of the US Department of Health and Human Services (HHS), at a press conference announcing the halt.
“Often these are services that your family would typically have provided for you that the federal government has started to fund,” said Mehmet Oz, administrator of the Centers for Medicare and Medicaid Services (CMS), alleging at the press conference that the program “can be abused”.
Seniors protest against cuts to Social Security, Medicaid and veterans’ healthcare on 30 April 2025 in St Paul, Minnesota. Photograph: UCG/Universal Images Group/Getty Images
In-home supportive services (IHSS), as they’re known in California, allow Rosa to take care of her disabled son without needing to work an additional job outside the home. Rosa is also a senior editor at the Thinking Person’s Guide to Autism, an online resource hub that connects her with other families and autistic people. For many families, she said, the program is a lifeline, allowing them to provide care themselves or hire a caregiver for part of the day. If they lose that, families will be plunged into economic precarity, with caregivers forced to take on additional jobs while their disabled and ill family members go without care.
“Without this, people become homeless. They lose their income. They lose their stability. Whatever tiny safety net they had is gone,” Rosa said. “It’s just cruel.”
Home-based services have become “the flashpoint” in fraud accusations, said Andy Schneider, research professor of the practice at the Georgetown University McCourt School of Public Policy. But federal officials haven’t specified what exactly is fraudulent – a highly unusual way to approach such accusations, said Carl Tobias, law professor at the University of Richmond.
“They’re just suspending the funds, and then shifting over to the states the burden to come in and prove that they’ve done everything possible to eliminate what the federal government said is fraud, but they haven’t shown much by way of proof of that,” Tobias added. “That part of it, I think, is new, and that’s what is so troubling.”
Officials have pointed to an increase in home-based spending – but growth doesn’t equal fraud, Schneider said. More people want to be cared for at home than in the nursing home, caregivers need decent wages, and “the degree of disability in this population now requires more hours of personal care services”, he said.
At the same time, home-based services are overall less expensive than institutional care, which is covered by a different part of Medicaid, Schneider said.
Caregiver Lakiesha Johnson assists Grace Feazelle in getting ready to eat lunch in Feazelle’s apartment in Norfolk, Virginia, on 23 April 2025. Photograph: Virginian Pilot/TNS
Rosa echoed that point: “The research is really clear. It’s so much less expensive to keep people in their homes and in the community than it is with institutions.”
That’s part of the reason CMS has been pushing states for years to transition to more home-based care – but now Oz is flipping on that position.
“It’s substantially a political debate, which seems to be focused on blue states like New York, California, Minnesota,” Tobias said. “It’s not happening in the red states.”
But disabled people and their caregivers “are the ones who are going to suffer”, Tobias said, noting that “the burden falls on the people who need the services, so it’s helpful” for “states to be pushing back as best they can”.
The states will likely sue, Tobias said. “Probably sooner rather than later because I don’t know that they have much choice.” But it takes a long time to resolve disputes in court, and states may not be successful, he said.
Minnesota already had an agreement with CMS to stay court proceedings on earlier halts until early September, Schneider said.
Qualifying for in-home services was its own challenge that took months to complete, Rosa said. “They’re very rigorous in how you qualify for it,” she said. It meant filling out an “interminable” stack of confusing forms, she said. “I don’t know how people do it if English isn’t your first language or you struggle with language.” Then there was a series of meetings, and eventually a social worker came to inspect their home, which they do annually under the program.
The process is rigorous in part to screen out fraud and abuse. As with any program, a small minority of recipients have figured out how to defraud the system, Rosa said, noting: “But the vast majority of the people who use this are depending on it. And I would say even more than that, there aren’t as many people using it who need it because there are so many barriers to getting this care already.”
The administration’s policies have also affected disabled people in other ways, such as cutting Medicaid by adding more paperwork requirements and cutting food programs like the Supplemental Nutrition Assistance Program (Snap).
“It is unconscionable, to me, for us to be moving backwards when we haven’t even gotten to the point where we’ve achieved parity and reasonable living conditions for people like my son,” Rosa said.
Within the disability community, the reaction has been “yet another tidal wave of shock and disgust”, Rosa said.
“We’re almost getting inured to them at this point. But we can’t, right? Because all of these blows affect our lives. It’s hard to keep reacting to it in the manner in which they deserve – but they’re all horrifying.”
