Families defend disability services amid health cuts

Families of Idahoans with disabilities say their lives could be upended as lawmakers in the state's Republican-dominated legislature mull sweeping cuts.

Services at risk include the 24/7 care that allows a 39-year-old with cerebral palsy to live independently; the in-home caregiving that lets a 26-year-old with brain damage from a hemorrhage at birth stay in his family home; and private duty nursing for a 19-year-old with cerebral palsy who has qualified for hospice care for complications including pulmonary decline from a spinal cord injury.

Concerns for such care arose when Idaho Gov. Brad Little, a Republican, proposed cutting $22 million from Medicaid - the joint state-federal health insurance program for people with low incomes or disabilities - to balance the state budget. Home- and community-based services such as caregiving, nursing, and residential rehabilitation are optional under Medicaid, and Little listed them as possible targets for the cuts.

Across the country, people with disabilities and their families are confronting similar plans to cut Medicaid as states grapple with budget challenges compounded by congressional Republicans' One Big Beautiful Bill Act, which is expected to reduce federal spending on Medicaid by nearly $1 trillion over the next decade.

A four-hour town hall on the proposal in Idaho drew more than 500 people to the state capitol. Colorado lawmakers heard hours of testimony from concerned residents before pausing a pay cut for family caregivers. In Missouri, families raised alarms about a proposed $80.7 million cut to services for people with disabilities.

"We saw this coming. We've tried to educate members of Congress," said Kim Musheno, the senior director of Medicaid policy at The Arc, a national disability rights organization.

"Whenever there's pressure on state budgets like those that are caused by the One Big Beautiful Bill Act, they go after Medicaid, and then they go after optional services," Musheno said.

Many cuts included in the GOP bill, which President Donald Trump signed into law in July, haven't yet taken effect, but the law is already impacting state budgets, particularly in states that align their tax rules with federal regulations.

Conforming to the federal law is expected to cost Idaho $155 million in revenue this year. Colorado lawmakers were called into a special session last year to address a nearly $1 billion hole created by the law. Those shortfalls - combined with national trends of increased Medicaid costs, flattening tax revenue, and further tax cuts passed by some state legislatures - are putting pressure on Medicaid programs.

Still, Musheno said she was surprised by how quickly Idaho targeted services for people with disabilities. "I couldn't believe it."

Little had already ordered Medicaid cuts last year as part of an effort to address a budget shortfall after years of state tax cuts and increasing program costs. That led to a 4% across-the-board reimbursement cut in September for medical providers' work with Medicaid patients. Little's new proposed cuts to optional services would be on top of those previous rate cuts.

"We were told by the legislature that they want to save some money in Medicaid, and so what we put together was a list of seven different options that were there," Little said at a Feb. 17 press event. "There's only so many levers we can pull in the Medicaid area that doesn't jeopardize our funding."

'We just hold our breath'

Amber Grant said any further cuts for the nursing agency that provides care for her 19-year-old son, Matty, could be catastrophic.

He was born with brain damage and cerebral palsy before suffering a spinal cord injury when he was 10. In 2024, he briefly received hospice care before the family decided to work with a palliative care team to help him live out his life.

Through Medicaid, Matty qualifies for 120 hours of in-home private duty nursing care per week. But because of a nursing shortage, he typically receives only about half of that care, and Grant said it would get worse if the nursing agency is subjected to any more reductions.

"The reality is that any of us at any point in time could become disabled," Grant said. "What kind of quality of care would we want?"

The potential cuts run even deeper for Grant's family. Through another optional in-home Medicaid program, she and her husband, Jason, are both eligible to be paid for caring for their older son, Luke. The 24-year-old has autism, epilepsy, and an autoimmune condition and requires supervision 24 hours a day.

Jason primarily works as a self-employed remodeler, but Grant's only income is the $21 an hour she gets to care for Luke. But she can be compensated only for the time she has him one-on-one, meaning when someone else is taking care of Matty, such as Jason or his nurses.

Grant said keeping up with the family's house payments will be nearly impossible if they lose that income, and she said it seems like only a matter of time before some or all of her sons' in-home care is disrupted. Idaho is projected to lose $3 billion in federal Medicaid funding over the next decade as a result of the One Big Beautiful Bill Act, according to KFF, a national health information nonprofit that includes KFF Health News.

"We just hold our breath every legislative session," Grant said. "I feel like I'm always trying to prove their worth, to prove their value, and it's exhausting."

State Rep. Josh Tanner, a Republican who co-chairs the legislature's powerful budget committee, said he opposed cutting home- and community-based services, but it was up to a separate committee and workgroup to finalize cuts to the Medicaid program.

Medicaid covers over 300,000 people in Idaho. According to KFF, the federal government picked up 80% of the state program's $3.6 billion tab in 2023. Tanner said tapping the state's $1.3 billion in reserves to fill the $22 million gap was a nonstarter.

"We don't really have an overall revenue problem in the state right now," Tanner said, "but we do have a spending problem, and part of that has been Medicaid in general."

Senate Minority Leader Melissa Wintrow, a Democrat on the budget committee, disagreed, pointing instead to five years of tax cuts passed by the Republican supermajority that have cost the state $4 billion in lost revenue, including $453 million last year.

"What we need to do is restore the revenue that we cut and put it back and admit the mistake and stop harming people and the very services that Idahoans depend on," Wintrow said.

'It keeps me awake at night'

It's also unclear whether cuts to community-based care would save Idaho money, something Tanner acknowledged. For optional Medicaid programs to be approved by the federal government, states must demonstrate that they are cheaper than existing alternatives, such as being cared for in a nursing home. Cutting community-based care would probably push many people with disabilities into more costly institutional care.

That's what Toni Belknap-Brinegar fears for her son Antahn Brinegar.

A brain hemorrhage at birth left Antahn, now 26, with severe brain damage, physical and developmental issues, and a seizure disorder. Belknap-Brinegar is his primary caregiver, but she realized when Antahn was 8 or 9 that she wasn't physically capable of caring for her growing son. Now 200 pounds, he has two paid in-home caregivers, Belknap-Brinegar said, both single mothers whose own livelihoods may be in the balance amid talks of cuts.

Nursing homes aren't equipped to properly care for Antahn, Belknap-Brinegar said. He needs to be constantly monitored for seizures. He can't communicate his needs well, for example when he has to go to the bathroom.

"Without the services that he has and the care that he gets now, he would end up in a care center, and frankly, he would die," Belknap-Brinegar said.

While home and community-based services are technically optional parts of Medicaid, a 1999 Supreme Court decision required states to provide them to people with disabilities when appropriate. A Justice Department investigation in the waning days of the Biden administration found that Idaho was unnecessarily segregating disabled adults into nursing homes, in violation of that ruling. The Trump administration is attempting to slash access to the lawyers who help ensure those rules are followed.

Documents obtained by the Idaho Capital Sun also show the state agency that oversees Medicaid does not think the state has enough space in its residential facilities to care for all the people whose home- and community-based services could be cut under the governor's plan.

That's Ned Fowkes' worry for his 39-year-old daughter, Eva.

A brain bleed when she was an infant left Eva with severe cerebral palsy and significant developmental disabilities. Although Eva is unable to speak, she has a "wonderful awareness," Fowkes said, and is able to communicate through her expressions and convey her preferences.

After being cared for by her parents for 21 years, Eva was eager for the chance to move into a supported living home, where she could get round-the-clock care while living with another person with disabilities.

"Like most 21-year-olds, she probably wanted to hit the road and not be under the roof of her parents anymore," Fowkes recalled. "She's always been courageous in that sense."

Fowkes and his wife visit at least three times a week, but at 79 and 76, they are no longer able to provide their daughter's direct care.

The staff at Eva's home already barely make a living wage, Fowkes said. Cuts to the program that pays for her care would trigger more turnover - or, worse, shutter the agency that staffs the home.

"I don't know what we would do," Fowkes said. "Eventually we'd lose our home. We would be bankrupt. Where would Eva go? Where would her roommate go? Who would care for them?"

"It keeps me awake at night," he said. "Believe me."