As states follow Trump’s Medicaid fraud playbook, people with disabilities struggle to find care

It’s hard for Jennifer Kucera to escape the past. The nursing home where she says she got scabies, was punched in the face, and was sexually assaulted is just three short blocks away from her current home in Berea, Ohio.

“I didn’t even know what scabies were,” said Kucera, who has spinal muscular atrophy and needs around-the-clock care from Medicaid-funded providers to help her bathe, dress, and otherwise navigate her life. “These are all things that really shouldn’t happen in a place where you’re supposed to be protected.”

She spent three long years in that nursing home and doesn’t intend to go back, especially after receiving 12 years of stable care from local in-home care providers. But now, after looming changes to state Medicaid regulations and a crackdown on purported fraud, Kucera fears she may have to return to the nightmare nursing home.

The dread started with a YouTube video. In May, the conservative news outlet the Daily Wire published an investigation into Medicaid fraud in Ohio’s home care system, suggesting that caregivers were just getting paid “to hang out with their own families.” Ohio Gov. Mike DeWine (R) quickly placed a six-month moratorium on new home care providers and is expected to sign into law a bill that tightens restrictions on who receives Medicaid-funded care and who can provide that care — all in a bid to curb fraud.

Disability advocates say these actions are straining a home care industry already at its breaking point, including a nationwide provider shortage and federal government cuts to Medicaid funding that are starting to be felt at the state level.

“What is happening in Ohio is a bellwether for what we’re going to see in states all over the country,” said Nicole Jorwic, chief program officer at Caring Across Generations, an aging and disability advocacy nonprofit. “And the complete microscope that the Trump administration is putting on states to find bad actors is causing disarray.”

Ohio legislators’ actions resemble the moves made in recent months by federal officials. Centers for Medicare and Medicaid Services Administrator Mehmet Oz has scoured the country for examples of fraud, taking his camera crew with him to Florida, California, and now in Ohio .

Advocates and public health experts say that while health care fraud certainly exists , tightening restrictions on care and providers could have unintended consequences and force more disabled people into institutions and nursing homes.

It might make life tougher for people like Justin Martin.

Martin is desperate to move out. The teacher, who lives near Columbus, Ohio, loves his parents, but like any 30-year-old, he wants his own spot. He’s started talking with a real estate agent about finding an accessible condo, since he has cerebral palsy and uses a wheelchair. The problem isn’t money. It’s that moving out means he will need a stable roster of providers to help him with basic activities of daily living, and providers are in short supply in Ohio and nationally.

Last fall, Martin was left with zero help after a provider defrauded him and was subsequently fired. He spent hours every day searching for caregivers. One provider quit after a single session, while another quickly decamped for a better job.

“You’re competing with Chipotle,” Martin quipped, suggesting that home care providers can receive superior pay and benefits in some food service jobs. (The national median wage for home care workers was $16.78 an hour in 2024.)

Martin now has one part-time provider who helps him Monday through Wednesday, with his parents filling the care gap. So when DeWine announced the provider moratorium and legislators discussed further tightening Medicaid regulations, it left him furious. He and many other disabled Ohioans descended on the Statehouse on June 3 to push back against the moratorium and the proposed bill, House Bill 795, which originally sought to tighten regulations on several issues, including the electronic system that confirms that caregivers are actually providing care at a person’s residence.

But when the advocates showed up to the rotunda that morning, they were greeted with a bill that contained something more shocking: a total ban on paying family caregivers for home care.

One state representative said the Ohio House Medicaid Committee’s surprise addition of the family caregiver ban would “ blow up Medicaid in Ohio .” Family caregivers have long been the backbone of disability care nationally, though they often are unpaid. CMS relaxed these rules during the pandemic to allow states more flexibility on paying caregivers, which has led to a variety of approaches to paying family members and what type of disabilities are covered.

The proposed ban felt particularly cruel to Emily Lark, who had to quit teaching and went into debt to become a personal care attendant for her 7-year-old daughter, Anika. She makes roughly $15 an hour now. Lark found out about the ban from a text message while maneuv…