Will You Lose Your Medicaid Waiver?

A look at fear mongering, facts, and what the “One Big Beautiful Bill” really means for families

Over the past few weeks, left-leaning disability organizations like The Arc and Disability Rights Ohio have put out dramatic statements meant to send people with intellectual and developmental disabilities into a panic. While this kind of fearmongering is good for clicks, likes, angry emojis, and donations, it is not serious public policy analysis.

Take The Arc’s latest claim: “This bill will result in millions of people with disabilities losing access to health coverage.”

That statement is patently false. There is no credible policy analysis, whether from KFF, the CBO, or anyone else, to back it up. Worse, The Arc of Ohio sent this frantic email to Ohioans urging them to call their representatives on July 4, 2025, after Congress had already passed the bill, just hours before it was signed into law. At that point, calls to Congress were meaningless. All it did was stir up fear among people with disabilities who rely on Medicaid.

Disability Rights Ohio’s Scare Tactics

We also came across a document from Disability Rights Ohio (DRO) that’s been circulating online. It claims to explain how the federal budget might affect Medicaid. But instead of offering people with disabilities and their families clear, factual information, it plays on fear. The document is plainly aimed at people with intellectual disabilities, including basic definitions of words like “budget,” “debate,” and “Congress” for those who don’t know what those words mean. This is actually thoughtful and helpful, as many adults with cognitive disabilities benefit from definitions of words like these. But when you are writing for this audience, you have a moral responsibility to also be accurate, not use your readers as pawns for partisan scare tactics.

What DRO Gets Right

Medicaid is absolutely critical for Ohio. It pays for long-term care in nursing homes and in homes and communities. It covers over 100,000 people with disabilities who rely on HCBS waivers to live outside of institutions. That’s 100% true. It's also true that some Ohioans will lose their Medicaid coverage.

Where DRO Crosses the Line

Here’s where DRO stops being an honest advocate and becomes a fear-monger, especially toward people with intellectual disabilities reading their simplified handout:

“Over 100,000 individuals on HCBS waivers could lose access to needed services.”

A complete ending of the waiver program in Ohio is not in the federal budget bill. It also isn’t in Ohio’s just-passed state budget. The federal bill does not eliminate waiver slots, cut waiver funding, or instruct states to remove people from waivers. Waivers continue under the same match rules they always have. Ohio just passed its state budget with zero cuts to waivers. Telling vulnerable people on waivers to worry that they’ll lose their services is dishonest.

Look, nobody is more critical of Ohio’s developmental disability system than we are at End Ohio’s Parent Penalty. We exposed shameful Ohio bureaucrats for calling the families they serve "greedy," "lazy," and "mental," and we've sued the state to defend disability and civil rights - twice. But even we can say with full confidence that Ohio has not released any plan to kick over 100,000 Ohioans off their Medicaid waivers.

“Cuts to Medicaid could force states to cut needed home and community-based services…”

This is a slippery-slope guess. Yes, states under financial pressure could in theory cut optional services someday. But this bill doesn’t force that, and Ohio’s current budget keeps waivers fully intact, even though it contains a trigger that affects Medicaid expansion adults, people without institutional level of care who became eligible through the ACA. In past budget battles years ago, we’ve seen waivers threatened. But this time, it’s low income adults without significant developmental disabilities whose Medicaid is on the chopping block.

So will you lose your waiver? No. At least, not because of the federal budget bill.

If you or your loved one is on a waiver, this new law does not take away your waiver slot or cut your services. There is no language in the federal bill telling states to reduce or end waivers. There is nothing in Ohio’s new two-year budget that does this either.

That said, Ohio’s new budget does include funding to create an electronic asset monitoring system that will flag people with more than $2,000 in assets and strip them of Medicaid, and that’s something to keep an eye on. Instead of panicking over losing your waiver in a massive waiver wipeout due to the federal budget bill, it might be wise to pay close attention to your bank balance to avoid accidentally crossing the asset limit line just by forgetting to move a couple hundred dollars into your ABLE account one month.

Could budget pressures years from now push states to revisit what they pay for certain services? Yes. That’s always been true, and it’s why people with developmental disabilities and their families have to stay vigilant.

But some disability advocacy groups are scaring people with intellectual disabilities by implying or stating that their services are about to vanish, all to drive calls, donations, and social media clout. People with developmental disabilities and their families deserve honest, factual, timely information so they can advocate from a place of truth, not fear. This will help lawmakers take us more seriously.

Bottom line

Around 11 million people nationwide are projected to lose their Medicaid coverage under the “One Big Beautiful Bill"over the next nine years, mostly adults without disabilities who gained coverage through Medicaid expansion. About 59 million people are projected to keep their Medicaid. Telling people with intellectual disabilities that they are the target for these cuts is misleading and manipulative.

We should all keep fighting for paid family caregivers, fair provider pay, and a Medicaid system that truly serves the most vulnerable. But we need to accomplish this goal while treating people with intellectual and developmental disabilities with respect, not using them as political pawns.

7/6/25 Update: After we published this piece, we had the opportunity to ask Arc of Ohio Southwest Regional Director Jen Powers Alge about the purpose of sending their email urging people to contact Congress after the bill had already passed. We’re including her full statement here so readers can see The Arc of Ohio’s position:

"The Federal budget bill has rarely ever been deadlined for July 4th. The Arc of Ohio, as well as every other nonprofit organization in Ohio and nationally sent out action alerts when they saw that the gop and the president in particular wanted to bypass community/voters/national debate on the budget and just ram it through on a meaningless deadline in order to celebrate a “win” on Independence Day.

I am, in fact, an employee of the Arc of Ohio. I’m also, and first and foremost a mom to two children with developmental disabilities. I have more skin in this game than anyone in this group. I don’t have typically developing children and I’m not rich. I am an advocate for our kids and caregivers like me and I will never stop fighting for what is morally right for our families. I work at the Arc because I learned everything I know about advocacy from my boss Gary Tonks, who has always, always advocated for our families. I want to help families in Cincinnati and all of Southwest Ohio and I’ll never take no for an answer.

I understand the concern about alarmist campaigns. I’m always critically thinking about advocacy alerts I see from the half a dozen disability orgs I follow. But I haven’t seen anything that is dishonest from these orgs. I have seen a lot of dishonest propaganda from the Trump administration and their press Secretary and social media. It’s honestly alarming that no one calls out the propaganda. Trump is a propaganda president who hopes we all buy into dumbed down policy about rapist immigrants and criminals. This is just a deflection of who we need to be worried about. As an average American you should worry more about who is taking away your social services than some racist immigrant at the border. Follow the Money. Because right now that BBB law is going to a scary immigrant in Texas rather than to our families who take care of our children with disabilities.

Vote."