‘Isolating and terrifying’: Wisconsin mom of disabled son is worried about Medicaid cuts

Katey Olson’s 12-year-old son Jace has what’s known as profound autism, a debilitating type of autism that requires intensive round-the-clock care. He’s nonverbal, incontinent, is limited in what he will eat or drink, and struggles with sensory issues.

Despite all of this, Jace loves bike riding and being in the pool, and a few weeks ago he went ice skating with friends. He requires more support to do these activities than other preteens, but with the help of Medicaid, his family has had access to adaptive equipment — such as the specialized bike trailer they use on family bike rides — and support to help Jace experience activities in their community of Viroqua.

These are the services, though, that Katey thinks would be first on the chopping block if Medicaid funding was cut, something she has been worried about in recent weeks as Republican lawmakers and the Trump administration implement massive cuts to the federal government.

“He got to go and participate in a way that was meaningful to him,” Katey said of Jace’s recent trip to the ice rink. “You cut Medicaid funding, stuff like that goes away.”

Medicaid is a public health program that provides insurance coverage of health care to patients with limited resources, including children, older adults, pregnant people and people with disabilities. It’s a joint federal and state program, and in Wisconsin it supports more than 1 million people, including about a third of kids in rural areas like the one where Jace lives.

Republicans in the U.S. House passed a budget resolution on Feb. 25 that called for about $880 billion to be cut from programs overseen by the House Energy and Commerce Committee, which oversaw $600 billion in Medicaid funding in 2022. While some Republican leaders have said Medicaid won’t be cut, experts say doing so would be impossible to avoid since it accounts for so much of the budget.

Both Katey and her husband Shawn have private insurance through their employer, but it only goes so far, she said. While it covers traditional medical care, she said, it doesn’t cover the other treatments that Jace will need for his entire life, such as continent supplies, long-term services like speech, occupational and physical therapy, some medications, and adaptive equipment. Jace also needs sedation to receive dental care, which can cost up to $30,000 without Medicaid, and he has frequent doctor appointments that add up.

In Wisconsin, Medicaid also helps fund some special education services in schools, like the tablet Jace uses to communicate with his teachers and peers and the sensory room where he can swing and jump and regulate his emotions.

Medicaid also helps fund community programming for Jace, like the ice skating trip or summer school. The Olsons work with Jace’s social worker to brainstorm activities in the community and with peers, which she said are critical to make sure Jace isn’t isolated.

“On a community level, if we didn’t have programming that was set up to help accommodate him and account for his safety and the safety of others, he’s not going to be able to get out of the house and go do anything. So summer school is out, being able to take him on bike rides as a family, being able to go to events with his cousins, things like that, totally that eliminates all of it,” Katey said.

If Medicaid funding is cut and these supports for Jace disappear, he would have a hard time going to school and getting the care he needs.

“He would not be able to regulate and focus well enough to even get anything out of going to school or being with his peers, anything like that. He would have to be essentially institutionalized because we wouldn’t be able to manage him,” Katey said.

It hurts their family, too, if the Olsons can’t access these additional resources. Their 13-year-old daughter Eden may get less support or attention, and it would make it harder for Katey and Shawn to go to work. Shawn is a carpenter for the highway department, helping to maintain buildings around the county. Katey manages more than 50 staff in a labor and delivery unit in La Crosse that delivers about 2,000 babies a year, she said. If she weren’t able to work, it would affect those workers and families.

“Cutting Medicaid has an impact both at a personal effect for my son, but also on a social, societal and economic front in terms of my ability to contribute and my husband’s ability to contribute,” Katey said.

As a mom of two, Katey said, it’s been scary to think about a future without this funding. She’s lost sleep and has been struggling to focus at work.

“It’s been isolating and terrifying. I have to think about my son not just now, but I have to think about how I personally am going to be able to take care of him in five years, 10 years, 20 years down the road. So it’s been scary,” she said.

“Medicaid is a foundational pillar of our society and our way of life,” Katey said, and while she understands that improvements need to be made in the regulation and planning of federal funding and programs, she says cutting Medicaid is not the solution. She worries that once the funding is cut, it won’t be possible to reinstate it.

“It feels like watching somebody you love drive towards a cliff. You know what this outcome is, you can see it happening, and you keep saying, Turn the wheel, turn the wheel, turn the wheel, turn the wheel. You don’t have to go off this cliff. There are other ways. And it just keeps going,” Katey said.