By Brendan Scanland
WASHINGTON, D.C. – With President Donald Trump’s “Big, Beautiful Bill” come big changes for programs like Medicaid in the next year or two.
The joint federal and state program that helps cover medical costs for people with limited income and resources is crucial for the lives of many Americans living with disabilities.
It was branded “The Big Beautiful Bill.” But some Americans living with disabilities say the President’s new spending and tax law could be devastating.
“This is a bigger issue with many ripple effects. The passage of this bill is concerning. It’s scary to the disability community,” said Shona Eakin, the CEO of Voices for Independence in Erie, Pennsylvania.
Eakin’s organization helps people with disabilities live independently. Eakin, too, relies on those same home care services.
“Without my homecare worker, I couldn’t do my job. She comes in every morning, gets me up, gets me dressed, gets me ready for my work day,” said Eakin, who warns the ripple effect of the cuts could stretch beyond Medicaid recipients. “I myself worry that my services are in jeopardy- even though I’m not a Medicaid recipient… Anything that we take for granted today, we can’t take it for granted anymore. It’s not necessarily always going to be there,” Eakin added.
Close to $1 trillion in federal Medicaid cuts, including a new requirement for states to pay more of the bill, is set to deliver a blow to the roughly 12 million Americans expected to lose coverage in the next 10 years.
Some warn the changes will also impact home and community-based services (HCBS).
“When states have to bear a bigger share of that cost, that means there’s going to be fewer services,” said Michael Linden, senior policy fellow at the Washington Center for Equitable Growth. “That’s going to be one of the big consequences of these cuts.”
“The federal matching funds coming to Pennsylvania will be reduced. By what percentage? We don’t know,” said Eakin. “Which means the burden of covering all those expenses rests on Pennsylvania.”
The vital services could be on the chopping block as states like Eakin’s try to do more with less, determining where to ration their dollars.
“Those hard choices are going to involve looking at what they can afford to pay for and what they can’t,” said Eakin.
Eakin says in Pennsylvania, home and community-based services are considered optional — unlike nursing home care, the only long-term service and support Medicaid is required to cover.
“With Medicaid, the only entitlement you have is what’s written in the state plan. So for long-term services and supports, the only entitlement that’s written in the state plan is nursing home placement,” she said. “Our services are considered optional. And optional does not give you security.”
Republican lawmakers who supported the bill argue that efficiency and rooting out waste, fraud and abuse are the only ways to protect the program and make it more sustainable.
“In order for the benefits to stay stable, we’ve got to eliminate the waste, fraud and abuse,” said Rep. Mike Kelly (R-Pa.). “Benefits will be consistent, the way we operate — our overall operation — has been slimmed down and become more efficient, more effective.”
Eakin says this isn’t a partisan issue — it’s personal.
“We’re talking about real people with real lives. If everything happens the way that we think it will, it’s going to be catastrophic to people with disabilities and their families, people who are elderly and their families,” said Eakin.
Some changes are scheduled to begin late next year, but an exact timeline is up in the air — keeping many on the edge of their seats.
“I just don’t know what’s coming because there’s not been a lot of talk about what will be implemented and when,” said Eakin, who is encouraging others to speak up. “I’m telling them to tell their story. I’m telling them to go to their representatives and senators. And I’m telling them to make this issue real.”
With changes looking different state by state, advocates say they’ll be watching how state lawmakers pursue funding decisions with less dollars from the federal government.
