Stephanie Walters doesn’t know what she will do if Idaho stops funding home care for her daughter. Until recently, this option would have been unthinkable. But because of steep cuts to Medicaid from Donald Trump’s signature policy measure, state officials are considering the unthinkable.
Last month, Republican Gov. Brad Little released a budget plan that would potentially dissolve the state’s home care services. The possibility has people with disabilities and their families scrambling. A number of programs are on the chopping block, including dental services, occupational and physical therapy for children and adults, and home care for people with disabilities. That’s exactly the type of service Walters, 56, and her daughter rely on.
More than 500 people flooded the Idaho statehouse last month to testify against the proposed cuts; between her job and caregiving responsibilities, Walters didn’t have time to join them, but she shares their concerns. Walters and her daughter, Shelby, live in Meridian, Idaho. Shelby, 28, has cerebral palsy. Walters works as a nurse. She also receives some funding through the state to provide care for her daughter at home. Every morning, she helps Shelby get dressed, brush her teeth and use the bathroom. Four days a week, Shelby goes to a day program where she works on skills like expressing her needs and using money. This program is also funded by the state and is potentially on the chopping block.
Walters also helps Shelby do the things she loves: bowling, going to the movies and spending time with her boyfriend, Jason. They’ve been together for about a year and a half and go on weekly dates.
“She’s already planning her birthday for next year. She loves life,” Walters said.
(Emily Scherer for The 19th; Stephanie Walters)
Home care is already underfunded, according to experts. Even a small reduction in services could drastically impact the lives of people with disabilities and the families who rely on them.
National- and state-level disability and aging advocates warned throughout the negotiations around the president’s tax legislation, known as the “one big, beautiful bill,” that cuts to Medicaid would severely impact the most vulnerable.
The vast majority of Medicaid-funded home care programs are optional under the law — and “optional programs are what get cut first,” said Nicole Jorwic, chief program officer at Caring Across Generations, a national advocacy organization for caregivers. “We always knew that that would be the place that states would have to look, but this is the first time that we’re hearing of a cut to the whole system.” According to Jorwic, other states are watching what Idaho will do. Idaho, she said, may be a bellwether for what happens to disability services in other states. Massive cuts are also being proposed in Missouri and Utah, but none go as far as what has been proposed in Idaho.
While Jorwic and other experts anticipated the cuts, she still described the situation as “apocalyptic.”
“It’s a cut of $900 billion over 10 years. We went to hearings. We talked to governors” throughout the country as well as lawmakers, including Sen. Mike Crapo, a Republican from Idaho who chairs the Senate Finance Committee, she said. “We very actively forecasted that this was a real threat.”
Even small cuts can be devastating for home care programs, which are already underfunded and stretched thin. According to ANCOR, an organization representing home care providers that tracks issues like labor shortages and program closures, the system is already buckling under the strain in almost every state before any cuts take place.
The loss of funding for Shelby’s day program and for the care she receives at home would be devastating for both of her and her mother.
“I’d probably have to quit my job. I need to make sure she can spend time with friends and her boyfriend, but she would still be more socially isolated,” Walters said. “I’d have to get some kind of job where I can work from home so I could still pay the mortgage, for groceries, and everything else in this terrible economy.”
Walters has left work to care for her daughter before, when Shelby first started having seizures in early childhood. This is a common experience for many family caregivers, especially women, who account for almost 60 percent of all family caregivers, according to the Bureau of Labor Statistics. Women are also more likely to leave the workforce to fulfill caregiving responsibilities.
Karen Shen, a health policy professor at Johns Hopkins University Bloomberg School of Public Health, found in a 2024 study that there was a direct relationship between adult daughters remaining in the workforce and whether a state provided home care for aging parents. There was considerably less impact on sons in terms of employment.
“Overall, most people are cared for by women. Daughters provide a much greater share of hours of care than sons,” Shen said. “Daughters are potentially more likely to be secondary earners, so their labor force participation might be particularly sensitive in a way that sons are not.”
It still isn’t clear what and how much will be cut from the budget for home care services in Idaho. James Baugh, 73, a retired disability rights lawyer living in Boise has been closely following the heated negotiations occurring at the statehouse.
Baugh’s son, Gabriel, is 53 and has significant, constant medical needs. He is on a ventilator and, if he has a cold, he may need to have his tracheostomy, a hole in his neck through which he breathes, suctioned every 15 minutes. He eats through a tube inserted directly into his stomach. He needs assistance with every aspect of his daily life. Idaho’s home care program pays for people to come in and do all of that.
“That kind of one-to-one care is far beyond what I can pay for with my social security,” Baugh said.
(Emily Scherer for The 19th; Gabriel Baugh)
Gabriel is able to live at home because of Idaho’s home care program. If the program ceased to exist, nursing homes would reject Gabriel, according to Baugh. His medical needs are too complex.
“He would need to go to a long-term acute nursing hospital, which would be terrible for him. I don’t even know if there are any openings. There’s maybe one or two across the state,” Baugh said.
There are safety issues with that kind of long-term hospitalization; Gabriel can’t push a nurse’s call button if something is wrong. But even more than that: At home, Baugh is able to ensure Gabriel does things he enjoys.
“He loves live music. I play guitar and sing, and I have friends who come over. He loves to watch cooking shows and Food Network,” Baugh said. “Before his spinal cord injury, he wanted to be a chef. I thought after he had to start tube feeding, that he’d lose interest in cooking, but not at all.”
According to Baugh, the cuts are still being hotly debated behind closed doors. The challenge is getting lawmakers to understand the impact this will have on families like his.
“People know as an article of faith that all of these government programs are bloated and full of fraud and waste, and that cutting 4 percent is not going to hurt anybody,” Baugh said. “You have to penetrate that thinking and actually get them to look at the service and what it does. This is what happens to people if you don’t provide it.”