- Michiganders with disabilities face uncertainty and fear over proposed federal changes to Medicaid, as GOP lawmakers insist the changes only target “waste, fraud, and abuse.”
- Officials and advocates warn these changes may force states to make cuts to Medicaid and unrelated programs in order to make up for losses in federal funding.
- Cuts to Social Security staff and organizational changes in the U.S. Department of Health and Human Services add to the uncertainty and concern, advocates say.
There may be some big changes coming to federal funding, staffing and structures across programs like Medicaid and Social Security. It’s all part of a Republican-led effort to make government “more efficient” and reduce spending in some areas.
But Terry DeYoung sees a concerning pattern in these changes. DeYoung is a 68-year-old Holland, Michigan, resident who was born with a rare bone condition.
“It's been a long haul in my mind to get increased recognition and legal protections provided to people with disabilities over my entire lifetime,” he said.
Now, DeYoung said, it feels like the “progress” he’s seen is “being reversed.”
DeYoung recently retired from his work as disability concerns coordinator for the Reformed Church in America.
“To think about benefits that so many people with disabilities have relied on being threatened,” he said, “is really a big concern and has us … a bit scared.”
The U.S. Senate may soon vote on a federal budget packed with President Donald Trump’s priorities. The “Big, Beautiful Bill” passed the House last month with major changes to Medicaid — after months of Republicans saying the program “won’t be touched.”
The latest version of the budget takes over $600 billion out of Medicaid.
But Michigan’s Republican representatives argue these aren’t “cuts” — they’re saying the bill is “protecting” Medicaid by removing “waste, fraud and abuse.”
These changes, whatever you call them, could result in millions losing Medicaid coverage over the next few years, according to estimates by the nonpartisan Congressional Budget Office.
“This legislation reestablishes work requirements for able-bodied adults without dependents,” Representative Bill Huizenga (R-Holland) said in a May 22 post on X. “It stops illegal immigrants from accessing taxpayer funded assistance, cracks down on those enrolled in multiple state programs, and strives to reduce the more than $500 billion in improper payments.”
Nearly 2 million Michiganders, including many people with disabilities, are enrolled in Medicaid.
Amanda Rhines disagrees with the idea that there is widespread fraud and abuse in Medicaid.
“It’s not a check,” she said. “You don't get $500 a month from Medicaid. It pays for your services. And so if you don't have a disability, you don't need those services. And so you won't be seeking Medicaid to cover those services.”
Rhines is the director of Disability Network Lakeshore (DNL), a government-funded nonprofit that works to help people with disabilities in Ottawa and Allegan counties live independently.
The “improper payments” that Huizenga and other GOP congresspeople repeatedly reference can include payments for services or individuals that Medicaid isn't supposed to cover. But they can also include non-fraudulent payments that lack complete documentation.
Rep. Huizenga’s district includes the counties which DNL serves. The representative’s communications director, Brian Patrick, declined Michigan Public’s interview request, saying he didn’t “believe it will [be] a balanced interview.”
“It's really important for people to understand that Medicaid is not just a health benefit,” Rhines said. “It is the key funder of home and community-based services, which are therapies, which is respite care for families who are caring for people with significant disabilities. It is transportation. It is employment support to keep people employed and paying into the system.”
Another federal benefit that many people with disabilities rely on is also facing cuts. Social Security is not being changed in the federal budget that now sits before the Senate. But the Trump administration is slashing thousands of jobs at the agency that runs the program.
Advocates worry these job cuts could lead to more errors or delays in processing for benefits. Changes to the ways people receive benefits may force millions of elderly and people with disabilities to visit Social Security offices in person more often — and many could fall off the program entirely as a result.
These shifts in federal priorities and funds are “really frightening” for many people with disabilities, said Terry DeYoung. He is currently the board president of DNL.
“They're just going to reduce the amount of funding [for Medicaid] and make what appears to me to be assumptions that that's going to eliminate some of the fraud,” he said. “I think it's going to eliminate important coverage to people who need it and haven't been playing the system.”
He understands that the future of programs like Medicaid and Social Security are at risk. Projections suggest trust funds for both programs could be depleted within the next two decades unless tax revenue increases or spending decreases.
“[That’s] a huge issue for people who are alive today [and] are expecting to need those benefits in the next decade,” DeYoung said. “And I'm with them wanting it to be addressed in a realistic way.”
Ripple effects
On paper, it can look like Medicaid coverage for people with disabilities is not being affected by the Republican-led budget in any way.
But advocates, researchers and state leaders say that these shifts in funding and rules for states can still hurt programs that many people with disabilities rely on.
DeYoung and other advocates say they’re worried about people with disabilities in nursing homes.
“[Medicaid] often pays a substantial amount of their costs to live there,” DeYoung said. “That is being jeopardized.”
The federal budget does not directly reduce payments for congregate living. And states legally can’t just stop providing nursing home coverage to adults who qualify for Medicaid.
But if federal Medicaid funding is reduced, it’ll be up to the states to find ways to make up the difference.
That could mean reducing reimbursement rates for nursing homes or ending coverage for “optional” benefits like assisted living, prescriptions, dental care, speech and hearing disorder services and physical therapy.
Grand Rapids resident Greg Botting needed some of those services after breaking his shoulders due to a seizure. He spoke to Michigan Public’s Stateside on May 12.
“I didn't have to pay a single penny for the hospital stay, the rehab … but I didn't have to pay for the physical therapy even,” Botting, who was born blind, said. “Now I've got about 95% range of motion back in my right arm. The left arm is pretty much fine. So, I'm lucky all things considered and especially lucky that Medicaid was there and was able to cover all of that.”
Medicaid also covered costly schizophrenia medications for Jennie Knight’s daughter, Marissa, as Knight told Stateside on May 22.
“She looks very able-bodied and everybody's like, ‘Well, why aren't you working? You're just lazy.’ She's not lazy,” said Knight, who lives in West Michigan and is deaf herself. “People like Marissa, they don't display what their disability is, but it's just as debilitating if they don't have access to the care that they need.”
States may also need to take money from other programs to prop up the parts of Medicaid that they choose to continue to fund or have to continue to fund.
Centers for Independent Living like Disability Network Lakeshore are not funded by Medicaid. But director Amanda Rhines said she’s worried about the center’s ability to get funding for work it does to help people with disabilities transition out of school, get jobs and find affordable, accessible housing.
“If the state has to — which we think they should — pay [more] for home and community-based services for people with disabilities,” Rhines said, “our concern is that we may indirectly experience significant state cuts as the state has to absorb the full cost of Medicaid.”
And if Medicaid-eligible clients that DNL serves start to see reduced coverage, she said the center may have to expand the services it offers.
”I think what I really want people to know is that independent living for people with disabilities is a civil right. It’s not just a medical benefit,” Rhines said. She has a 13-year-old son with Down syndrome. “Medicaid right now is the primary driver of ensuring that those services happen and that people can live independently in their communities and not live in institutions. This is a big deal.”
And now, proposed changes to direct federal support for independent living programs is adding to the uncertainty.
Shortly after Rhines’ interview with Michigan Public, the U.S. Department of Health and Human Services (DHHS) publicly released its proposed discretionary budget.
The budget details efforts to reorganize the department, which includes folding funds previously dedicated to supporting seniors and people with disabilities through the Administration for Community Living into a new “Administration for Children, Families, and Communities (ACFC).”
The budget document says the new ACFC will “administer $29.3 billion in discretionary funding for programs that address the social service needs of Americans across the lifespan, including children, families, elders, people with disabilities, and their caregivers. The people in these programs suffer when these services are bifurcated, and these changes will increase efficiency and effectiveness of service delivery.”
This comes after DHHS announced plans to lay off over 10,000 employees.
