CW: Rape & Violence
Jennifer Kucera’s past is impossible to escape. Three blocks away from her home in Berea, Ohio, is the nursing home where she says that she contracted scabies, was punched in the face, and raped. The memories still burn fresh in her mind even years later. “I didn’t even know what scabies was,” Kucera recalled. “These are all things that really shouldn’t happen in a place where you’re supposed to be protected.”
Kucera has spinal muscular atrophy and needs full-time care. Just like millions of disabled people, she depends on Medicaid to be able to live independently. Medicaid provides caregivers who help her with activities of daily living.
For the last twelve years, that has been working out well for her. She has been thriving and hasn’t had to go back to the nursing home. That freedom, however, has now started to slip away.
The fear worsened because of a YouTube video. In May, the media outlet The Daily Wire published an investigation alleging fraud within Ohio’s Medicaid-funded home care system. The report suggested that some caregivers were receiving Medicaid funds to “hang out with their own families” rather than provide legitimate care services.
The political response was immediate. Ohio Governor Mike DeWine imposed a six-month moratorium on new home care providers and backed legislation designed to tighten restrictions on who qualifies for Medicaid-funded caregiving services and who can be a paid caregiver. State officials say the measures are necessary to combat fraud and protect public funds. But disability advocates fear the crackdown is targeting a system that is already under immense strain.
Across the nation, disabled people face a severe shortage of caregivers. The wages are low, and the work is challenging, making recruitment and retention a constant challenge. Advocates also worry that broader pressure on Medicaid funding could further destabilize services that many people depend on to remain in their homes.
The growing federal demand for oversight of Medicaid-funded caregiving programs has intensified these concerns. Robert F. Kennedy Jr. has argued against programs that allow family members to be paid caregivers, saying, “These are family members who are getting paid to do things that they used to do as family members for free. And this is rife with fraud, because we have no way at CMS to determine if they actually performed that duty or not.”
Disability advocates point to comments like these as evidence that efforts to combat fraud could lead to additional restrictions on programs that many families rely upon.
“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. “And the complete microscope that the Trump administration is putting on states to find bad actors is causing disarray.”
For advocates, the concern is not whether fraud should be addressed. It is whether efforts to eliminate abuse could unintentionally harm the people who rely on these services every day.
The stakes become clearer when looking at the lives of people like Justin Martin.
Martin, a 30-year-old teacher who lives near Columbus, dreams of moving into a place of his own. Like many adults his age, he loves his parents but wants the independence that comes with having his own home. He has already begun speaking with a real estate agent about finding an accessible condominium.
The challenge isn’t financial. Martin has cerebral palsy and uses a wheelchair, and he depends on caregivers to help with daily activities. Before he can move out, he needs a reliable team of caregivers.
That team has been difficult to find.
Last fall, Martin was left without any caregivers after a provider defrauded him and was subsequently dismissed. He spent hours every day searching for caregivers. One provider quit after a single shift. Another quickly left for a better-paying position elsewhere.
“You’re competing with Chipotle,” Martin said, pointing to a reality many disability advocates highlight. Home healthcare wages are similar to those in retail and food service, despite the demanding nature of the job. The national median wage for home care workers was $16.78 an hour in 2024.
Today, Martin relies on one part-time caregiver several days a week while his parents fill the remaining gaps.
His experience reflects a larger national problem. Home care agencies and disabled people alike are struggling to find workers. As America’s population ages and demand for long-term care grows, the caregiver shortage has become one of the most pressing challenges facing healthcare nationwide.
That is why many advocates reacted strongly when lawmakers considered even tighter restrictions on the system.
On June 3, Martin joined dozens of disabled Ohioans and advocates who traveled to the Statehouse to protest the provider moratorium and proposed legislation known as House Bill 795. What they found was alarming. Among the proposed changes was language that would have completely prohibited family members from receiving compensation for providing care to disabled family members.
For many families, paid caregiving is not a loophole. It is the only workable solution in a system struggling to attract enough professional caregivers. Family members often leave careers, reduce work hours, or absorb significant financial burdens to ensure loved ones can remain at home.
Emily Lark understands those sacrifices firsthand. To care for her seven-year-old daughter, Annika, Lark left her teaching career and accumulated debt while becoming her daughter’s personal care attendant. She now earns roughly $15 an hour, providing care that requires constant attention and responsibility.
Lark learned about the proposed family caregiver ban through a text message while unloading Annika’s wheelchair so they could testify before lawmakers. “I felt unheard, misunderstood, and angry,” she said. “It’s not just playing games with your grandma or going to the grocery store for funsies. It’s a job that you can’t walk away from.”
Following intense backlash from disability advocates, families, and some lawmakers, the proposal to ban paid family caregivers was eventually removed from the legislation. Yet many advocates remain concerned about the speed with which new restrictions have emerged and the limited engagement with the disability community throughout the process.
Matt O’Nesti, a board member with Disability Rights Ohio, said discussions about improving oversight had largely stalled before suddenly accelerating after the Daily Wire investigation was released.
“It’s happened at such a breakneck speed, and it’s really, really hard to figure out: Is this a ticking time bomb that’s going to destroy the system a year or so from now?” he asked.
The legislation that ultimately advanced focuses heavily on fraud prevention measures. Among other provisions, it requires electronic visit verification before providers can receive payment for services, including virtual clock-ins and clock-outs, and location verification. Family caregivers who live with the person receiving care are exempt from GPS tracking, though additional oversight mechanisms are expected.
Supporters argue these reforms are necessary to protect taxpayer dollars and prevent abuse.
Critics counter that while oversight is important, the legislation does little to address the underlying crisis facing home care. There simply are not enough caregivers.
Medicaid is not just a program. It is the lifeline that allows them to stay in their homes. It funds personal care assistants, private-duty nursing, and other services that help prevent unnecessary institutionalization. Without these services, many people would have no option but to enter long-term care facilities.
For Kucera, that possibility feels terrifyingly real. “If companies quit, or people quit in between these six months because of the moratorium, there will be nowhere for us to go to get new providers,” she said. “Our only recourse is literally calling 911 and going to a hospital, and then, probably from the hospital, moved to an institution that none of us want.”
Her warning reflects a fear shared by many disabled people and advocates: efforts to root out fraud could inadvertently dismantle a fragile support system that keeps thousands of people living safely in their communities.
For policymakers, the challenge is finding the right balance between accountability and access. Fraud should be investigated and prevented. Public funds should be protected. But advocates argue that reforms cannot lose sight of the people whose lives depend on these programs.
For Kucera, the debate is not theoretical. The nursing home she once lived in remains just three blocks away, a constant reminder of what she stands to lose. After spending three years there, she has no intention of returning.
Sources:
Broderick, O. Rose. “As States Follow Trump’s Medicaid Fraud Playbook, People with Disabilities Struggle to Find Care.” STAT, 15 June 2026, https://www.statnews.com/2026/06/15/medicaid-caregivers-state-pay-people-with-disabilities/
Gonzales, Morgan. “ANCOR Rebuts RFK Jr.’s Remarks on CDPAP, Home- and Community-Based Services.” Home Health Care News, WTWH Media, 15 Apr. 2026, https://homehealthcarenews.com/2026/04/ancor-rebuts-rfk-jr-s-remarks-on-cdpap-home-and-community-based-services/.