BOISE, Idaho — From 8 a.m. until late at night, Nathan Hill performs countless tasks for his 16-year-old son, Brady. Some of the tasks are small — things most people “take for granted that our kids can do,” Hill said, like popping Brady’s pimples when he gets acne outbreaks.

Others could mean the difference between life or death. A failure to properly maintain a tube into Brady’s windpipe, Hill said, could be fatal.

The Meridian teen was diagnosed with brain cancer as a baby and suffered a stroke during surgery, leaving him permanently disabled, Hill told the Idaho Statesman. In the years since, he’s needed help through hourslong routines every day. In the morning, Hill helps Brady use the toilet, take a sponge bath, get dressed and eat through a tube entering his stomach. At night, Hill hooks Brady up to a ventilator and other machines to help him breathe.

For years, the family tried to patch together care for Brady however they could. Soon after Brady was diagnosed, Hill left his job as a remodeling contractor to find flexible jobs that would allow him to work from home, where he could oversee a revolving door of outside caregivers. When they call in sick or quit after a few weeks — a common occurrence, he said — he steps into the breach, often pulling all-nighters to regularly suction and clean Brady’s mouth and nose to keep him from aspirating while using his ventilator. Such an event could land him in the hospital with pneumonia, Hill said.

Medicaid paid for those outside caregivers, but it wouldn’t pay for parents like Hill to do the work themselves — until the COVID-19 pandemic hit. In 2020, Medicaid made an exception to its rules, allowing family members to get paid to care for their disabled children or spouses. Finally, Hill said, he could provide his son with consistent, high-quality care and greater privacy, without outsiders coming in and out of their home at all hours.

Now, those days are over. The Health and Welfare Department shuttered the program July 15, prompting families to scramble for alternative care.

In a December letter to the Centers for Medicare and Medicaid Services, Health and Welfare officials asked the federal division to revoke the permission it granted for parents in the state to serve as paid caregivers. Idaho officials in their letter said the program’s cost ballooned from about $6 million in 2022 to over $24 million in 2024, which they attributed in large part to parents committing fraud.

The department “cannot continue to operate a program with such high rates of suspected and known fraud and abuse,” its 2024 letter read. “In the role as stewards of taxpayer dollars and oversight of this program serving vulnerable children and adults, the (department) has determined the most appropriate action is to move to terminate this expenditure authority.”

Agency officials have since backtracked on that accusation in statements to the Statesman, and instead linked the rising cost to an increase in parents enrolling in the program. Spokespeople for Health and Welfare said the agency can’t attribute the increased cost to “fraudulent billings alone,” but that whatever the cause, the rising costs were unsustainable.

A state law passed in 2024 required lawmakers to approve any state changes to Medicaid that could increase its cost. Lawmakers who aimed to keep budgets lean were unlikely to approve the increase, said Sen. Julie VanOrden, a Pocatello Republican who chairs the Senate Health and Welfare Committee and served on an informal working group about the family caregiver program.

Idaho has for years had a shortage of direct care workers — those who provide in-home medical care and help with bathing, getting dressed and eating — compared with the national average, according to a 2022 report by the Legislature’s nonpartisan Office of Performance Evaluations. As a result, parents say, they are struggling to find outside caregivers to replace themselves once the program ends.

Hill had advocated for over a decade for Medicaid to change its policy, arguing that parents were the ones providing their children’s care whether they were paid or not. But without the income, they had the added stress of holding down a day job while searching for and training outside caregivers of inconsistent quality. Forcing parents to hire outside caregivers “is a racket,” Hill told the Statesman,because parents ultimately end up providing the care anyway.

“You can’t even hire enough nurses,” Hill said. “They don’t exist.”

Medicaid exemption aimed to address worker shortage

In its initial support for the program, Idaho’s health department acknowledged the state’s shortage of direct care workers. Health officials framed the program as a creative way to try to solve a longstanding problem. But the number of such workers in the state rose 10% from 2022 to 2024, and the health agency “stands ready to assist” families having trouble finding providers, Health and Welfare spokesperson AJ McWhorter told the Statesman by email.

The department has also urged parents to find creative solutions, including splitting their child’s care among multiple provider agencies or trading care with another family in the community, McWhorter said. Hill, for example, could care for another family’s child while that family cares for his son.

Industry-wide, direct care workers turn over at a rate of 125% a year, said Andrew Rail, the CEO of 1 Assist Care, an Idaho agency for direct care workers. That means that if his agency hires 100 people in a year, 125 will quit in the same period. Three-quarters of direct care workers in Idaho who were actively looking for a new job said higher pay would stop them from leaving, the Office of Performance Evaluations found.

“There is a caregiver crisis,” Rail said.

Medicaid reimburses direct care agencies up to about $21 per hour for providers’ care, an amount determined by the Idaho Legislature. That amount must cover the provider’s wages, but also taxes, insurance and other overhead costs, Rail told the Statesman.

Providers must often drive among multiple patients’ homes, with gas prices further cutting into their wages, Rail said. And the jobs are tough: They’re physically demanding and take place at all hours, with patients who need help getting ready for school or at bedtime.

Under the program, parents who wanted to become their children’s paid providers had to pass a test and become employed by an agency like Rail’s. Those parents provided more efficient care, Hill argued, because they were more consistent despite the low pay, which minimized time spent training new caregivers. For many kids, too, receiving care from a parent rather than a rotating cast of strangers was a more natural fit, he said.

“These are very intimate cares — we’re talking about toileting, changing diapers, bathing or showering, eating, dressing,” Hill said. “It’s very traumatizing to both your loved one and your family to have this constant invasion of privacy and this revolving door.”

Health and Welfare, in its letter to Centers for Medicare and Medicaid Services, blamed much of the cost increase on fraud, such as inappropriately double-billing for multiple children’s care or claiming to care for children while driving for a ride-share company. It did not respond to a question about how common or costly such instances were in the program.

VanOrden said Health and Welfare established lax standards for families to qualify for the program, which contributed to its rapid growth. Those standards were determined by CMS requirements and the amount of oversight Health and Welfare had the capacity to provide with its current resources.

“Why, all of a sudden, did we have the increases? Health and Welfare really couldn’t answer the question. It was like, ‘because they qualify,’ “ she told the Statesman. “I don’t know if there’s any clear answers on it.”

Health and Welfare told CMS that cutting the program is an effort to conserve and responsibly steward taxpayer money. But Shannon French, a Meridian single mother who provided care for her children with Down syndrome and autism, argued that ending the program would just push families to rely more on other social programs.

As a caregiver, French received $11.50 an hour from Medicaid. Without that income, and without the ability to find an outside caregiver so that she can take a job outside the home, she will now be eligible for food stamps and Medicaid insurance of her own. Her children, she told the Statesman, will be eligible for social security income because she no longer has an income.

French said she’s tried to arrange for a swap with another family who needs a caregiver. But while she’s found some opportunities to provide care to others’ children, she’s had no luck finding care for her own. She’s even weighed driving for food delivery service DoorDash, where she could bring her kids along in the backseat to avoid leaving them home alone.

In the short term, at least, she’s resigned to caring for her children without pay, and enlisting family friends to help watch them when they can.

In an email to the Statesman, department spokesperson Greg Stahl acknowledged that many families used the program appropriately. The department did not respond to questions about how prevalent it believed fraud was in the program.

“The growth in the program is due to more families signing up to provide personal care services, increased utilization, and increased billing,” Stahl said.

Parents pushed back on the idea that fraud was a primary driver of the program’s rising costs. They said the likely cause of the costs came from the area’s growth, resulting shortage of professional caregivers, and increased awareness of the option to become their own children’s caregivers.

The department, Hill argued, had wrongly estimated how many would sign up for the program based on the number of families already working with an outside caregiver. The department should instead have considered years’ worth of reports from the Office of Performance Evaluations, which consistently determined that the state had a shortage of direct care workers, he said.

McWhorter did not respond to a question about how the department initially estimated the potential cost of the program.

Policy change puts families in ‘really fragile situation’

Bekah Bowman last year stepped down from her role as the executive director of CASA of Southwest Idaho, a group that advocates for foster kids, to care full-time for her son. Eli, 12, has a rare neurodegenerative disease that has caused seizures, blindness and an inability to walk.

She said she was getting paid about $16 an hour to care for Eli. Since the department’s announcement, her family has been scrambling to find an outside caregiver to replace her by July 15 — but they had no luck.

“All of the families are calling around and trying to find agencies that have caregivers, and nobody’s finding anybody. Everyone’s full,” Bowman said. “It’s putting people in a really fragile situation.”

Hill conducted a January survey of 100 direct care agencies. He found that, despite the state’s claim that the number of caregivers had increased, 90% of families would have no access to outside caregivers after the program ends.

Parents advocated for the department to tighten its requirements to prevent fraud without scrapping the program, Bowman said. Several parents told the Statesman they believed that the concerns the department had about fraud be easily addressed with more safeguards, including location tracking of parents who have clocked in for work.

“We can fix this airplane while it’s in the air,” Bowman said. “We don’t need to land it, pull it apart and put it back together. There’s some very easy fixes that could be done while we’re flying it.”

But more oversight of the program may require additional staffing and funding, which would need to be approved by the Legislature, Health and Welfare Director Alex Adams told lawmakers in a November letter. Because of the new state law last year, the Legislature will need to approve any amendments or waivers to the state’s Medicaid plan that would add or expand coverage. Though the law attempted to grandfather in existing programs, “the rapidly escalating cost” of the family caretaker program made things more complicated, Adams wrote.

For now, VanOrden said, she and Health and Welfare are working to come up with a more sustainable version of the program. She’d like to follow the lead of states that have started their own family caregiver programs separate from Medicaid, removing some of the federal program’s stringent restrictions and protecting Idaho from the unpredictability of federal spending.

“I know the dilemma that the parents are put under” without this program, she said.

Near the end of the 2025 legislative session, VanOrden asked parents she knew from the working group for the program to “give us this time, this year” to figure out what shape a future version of the program might take, she said. All that was certain was that things couldn’t continue as they were.

“There’s a definite need here,” she said. “But we can’t keep going down this road.”

©2025 Idaho Statesman. Visit at idahostatesman.com. Distributed by Tribune Content Agency, LLC.