TOOELE, Utah — President Trump’s “Big Beautiful Bill” touches on many different things, including Medicaid, which is the single largest health insurance program in the US, and the impacts of the cuts may be felt across Utah.
The Andersen family from Tooele is worried about what the cuts could mean for them.
Jack Anderson was diagnosed with Leigh Syndrome before he turned one. It’s a rare neurological disorder. Regardless of his diagnosis, Andersen's mother, Emily, said her son loves being at home, playing with his toys, watching TV, and spending time with his friends and family.
Children with Leigh Syndrome typically don’t live past 2 years old; Jack just celebrated his third birthday in April. When Emily thinks back to when he was first diagnosed, she had a lot of questions.
“One of the things that happened immediately after [the diagnosis] was they handed us paper to apply for Medicaid,” Andersen said.
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Emily didn’t realize it at first, but she needed Medicaid more than she could have ever known. She said it’s a lifeline for Jack, helping cover his hospital stays, infusions, therapies, and much more.
The family's biggest concern with the recent Medicaid cuts is losing her at-home nursing through a Technology Dependent Waiver.
“I have worries for our families, and then I have worries for other families as well,” Andersen said. “Nursing is considered to be an optional service, and so you talk about $1 trillion being cut, well, what’s one of the first things that’s going to be cut, and we think that it might be the nursing.”
At the Disability Law Center in Salt Lake City, Nate Crippes says eventually there is going to be fewer federal Medicaid dollars coming to the state because of the Trump Administration’s bill.
“I think what we anticipate is as soon as this next legislative session or beyond, there’s going to be conversations about what that looks like and what funding has to be moved around,” Crippes explained. “Are there going to be cuts to services and programs? Historically, there have been. When states have had less money, what they had cut are HCBS programs, like waivers.”
Crippes said there won’t be any imminent changes as the first changes will be work requirements put into place for people in the expansion population of Medicaid. However, he said that it won’t take effect until the end of the year, or 2026.
All the changes will happen over time, but for Andersen and her family, it’s difficult to think about what it could mean in the long run.
“These waivers help pay for nursing care, medical equipment, therapies that private insurance doesn’t even come close to covering,” Andersen said. “That’s why we’re so concerned. These waivers aren’t a luxury, they’re a lifeline.”
The Disability Law Center has a fact sheet on their website outlining what people should know about the bill and its effects.
