BOISE, Idaho — Trixy Wade looks adoringly at her 10-year-old daughter and tells her to “smile for daddy.” Harper instantly lights up.
It’s who she is, Wade said. She brings joy to everyone. Harper likes listening to Christmas music year-round and going on walks outside in her stroller. She’s nonverbal but communicates in her own ways. And she needs full-time care.
Harper was born at 1.5 pounds and has brain damage that caused cerebral palsy and affected all of her limbs, Wade said. She can’t move on her own and is on continuous feeds into her jejunum, a part of her small intestine. She experiences seizures, scoliosis and other medical complexities. When she wakes up in the morning, she’s stiff after not having moved all night and needs help stretching. She has to be moved throughout the day, and has therapies to help her lift her head to keep her airway open and learn finer skills, like grasping. She doesn’t always remember to swallow, and has exercises to prevent her from aspirating.
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A few years ago, Wade’s husband left his job and became Harper’s full-time caregiver. Harper qualifies for personal care services under Medicaid, and at the time, the state allowed parents and spouses to be paid to care for their family members with disabilities — a responsibility that can make it difficult to work. It wasn’t a lot of money, but it meant he could stay home with her while Wade worked during the days. In the evenings, they could spend time as a family.
But in July, the Idaho Department of Health and Welfare ended the program. Since then, Wade’s husband has taken a night job while Wade works days. One of them is always on shift. It has meant more time away from each other and less support.
“We just kind of cross paths every once in a while,” Wade told the Idaho Statesman in her Nampa home. “It used to be like in the evening, I come home from work, you had him to still lean on if you just had a bad day or were tired. You don’t have that anymore. It’s all on you. So it takes a toll.”
Earlier this month, Wade got a glimpse of hope.
Lawmakers introduced a bill she and other families had long been working on to restore the program with some parameters in place. The bill, sponsored by Rep. Ilana Rubel, D-Boise, and Rep. Marco Erickson, R-Idaho Falls, would direct the Department of Health and Welfare to take the steps required to reinstitute the program. Rubel said the program is “desperately important” for families whose children have disabilities that require high levels of care. For many families, day care is not an option, and a workforce shortage and low pay make it nearly impossible to find someone willing and able to provide in-home care.
“These families are up the creek essentially at the rate that the state is paying right now,” Rubel told the Statesman. “There is no possible way of getting care to come into the homes.”
Since the program ended, families like Wade lost an essential source of income — but their children still need care. For some families, that means they’ve had to find night jobs. Rubel said some fear having to live in their cars.
“These families have tried and tried and tried with no success whatsoever, to get somebody to show up, and nobody is coming to help them,” Rubel said. “They can’t go to work. They can’t leave their house. They can’t buy groceries. They have to be there all the time, and the state cut off the payment to the families.”
Although the bill comes with a fiscal note, which explains an expected cost, Rubel said this program actually saves the state money. Families are willing to do this work for little money, and without it, she worries Idaho could face lawsuits that would force the state to shell out far more money to ensure these families receive the help and care they’re entitled to.
“Family members are willing to do the work for $15 an hour, and if instead, the state got to pay the $25 an hour that it would take to get someone else to show up, it would cost us a whole lot more money,” she told House Health and Welfare committee members.
This population, she said, is already fully qualified to have these services provided by a third party, but families can’t find people to work for the expected pay. If the state was really providing those services, she said, the bill shouldn’t have a fiscal impact.
“The current situation is completely untenable for the most vulnerable families in the state dealing with the most severe and heartbreaking disabilities,” Rubel said.
Still, it could be an uphill battle to move the bill forward in a difficult budget year as lawmakers are searching for cuts. Rep. John Vander Woude, the chair of the House Health and Welfare committee, did not respond to an inquiry about whether he plans to give the bill a full hearing.
Program ended over ‘insufficient staff’
Before the COVID-19 pandemic, parents and spouses were prohibited from being paid caregivers to their family members under federal and state rules. During the pandemic, federal regulators allowed more flexibility for parents and spouses to provide paid care for their family members.
The program was popular, and hundreds of Idaho families took advantage. The program’s costs rose from around $6 million in 2022 to more than $24 million in 2024, according to previous Statesman reporting.
In July of last year, the Department of Health and Welfare ended the program because it said it had “insufficient staff and financial resources” to administer it and had identified “many” examples of suspected and confirmed fraud and abuse, the department said in a memo at the time.
Families told the Statesman they asked for specific instances of fraud and abuse, but hadn’t received any. Rubel said she didn’t know of any documented instances. The Statesman asked the department for specific examples, but it did not provide responses by publication deadline.
But Rubel said the intention was never to permanently end the program, but rather to restart it with safeguards in place. That’s what this bill would do.
The proposal would cap the number of families who could participate at 1,000 and limit the number of hours for which parents or spouses could be reimbursed to 25 per week. Families whose children or spouses need more care would still be able to seek it from non-legally-responsible people. Under the bill, the Department of Health and Welfare could establish procedures for a waitlist.
The fiscal note on the bill says the 1,000 potential families who would use this program are already eligible for more than $38 million in personal care services per year, which includes $11.6 million from the state’s general fund. These services include help with day-to-day tasks, like eating, moving around and getting dressed. This program would involve a few start-up costs, and then would be expected to cost the state about $10.4 million per year from its general fund, according to the fiscal note.
The shortage of direct care workers is a national problem, but Idaho’s situation is especially difficult, according to a 2023 report from the Idaho Office of Performance Evaluations. Idaho reimburses personal care services at a rate of $24.44 per hour — but caregivers earn less due to other costs that rate must cover. Some neighboring states, such as Montana and Washington, have a reimbursement rate that tops $40, according to the bill’s fiscal note, making it even harder for families in Idaho to find help.
Families told the Statesman it would cost taxpayers far more if their children were forced into institutions, and would also guarantee them a far lower quality of life. They belong at home with their families, they said.
‘Not just a job’
Justin Buell has spent months trying to get the proposal advanced.
Buell is the full-time caregiver for his daughter, 7, who has a rare genetic mutation that prevents her from eating and absorbing food. She gets her nutrition and hydration intravenously and has a broviac line that goes into her chest, which requires careful sanitation. She is nonverbal and her complex needs make her vulnerable to infections, making it especially important that a caregiver understands the care she requires.
“Humoristically,” Buell said, “there’s never a dull moment.”
Being able to get paid to care for his daughter allowed him to leave his career and stay with her full time.
“It’s not just a job to us,” he told the Statesman. “These are our responsibilities, and our loved ones, and so to us, it just makes sense.”
Since the program ended, he said, his family has considered putting their house on the market to make ends meet. His family has been fortunate to have help from his father-in-law, he said.
But their savings are long gone. For a while, Buell had been working as a caregiver for an older man when he could “here and there.” That man recently died, he said, but he’s looking for other caregiving opportunities to bring in some extra income.
Parents hope for legislative hearing
Buell and many other families are holding out hope that the bill will advance.
It’s not about the money, Wade said. But her daughter needs care, and if there’s no workforce, it is up to her and her husband. Recently, Wade emailed the House’s Health and Welfare committee, pleading for a hearing for the bill. Providing the best possible care for her daughter had required “profound sacrifice,” and her family no longer has any savings or retirement, she wrote. She described their home as functioning as an unpaid care facility staffed by “two exhausted parents, supplemented by grandparents.”
This bill, she wrote, “is about allowing families who are already providing the care to continue doing so without collapsing financially.”
Harper is probably the “purest person there is,” Wade told the Statesman. She doesn’t know there’s conflict. She doesn’t understand what goes on behind closed doors as people fight over the care she receives. But she smiles every day.
“She’s just the happiest little child, and she brings happiness to others,” Wade said. “And if that’s her main purpose here, I’d love to share it with people. She is a person, and she should be treated like a person.”
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