BOISE, Idaho — It’s been over a year since Idaho ended a program that allowed parents and spouses to be paid for care they provided to their family members with disabilities. The Department of Health and Welfare terminated the Family Personal Care Services program in July 2025 after the agency said it found fraud and abuse, and didn’t have the staff or financial resources to administer it. ...

Shannon French helps her son Grady, 13, put on his shoes at their home in Meridian, Idaho.

Darin Oswald/Idaho Statesman/TNS

BOISE, Idaho — It’s been over a year since Idaho ended a program that allowed parents and spouses to be paid for care they provided to their family members with disabilities.

The Department of Health and Welfare terminated the Family Personal Care Services program in July 2025 after the agency said it found fraud and abuse, and didn’t have the staff or financial resources to administer it. Last session, lawmakers introduced a bill to bring the program back with guardrails, but it never received a hearing.

Families told the Idaho Statesman that in the year since the program ended, they have struggled to pay for housing and bills, have had to take on night jobs and side gigs to make ends meet and have seen negative impacts on their children. Some said they feel like they are costing the state even more money now, after signing up for government assistance programs or relying more heavily on care that is billed at a higher rate, such as in-home nursing. The added stress has made it even harder to care for their medically complex kids.

“How do I provide and be a mother and everything to my child when the one program that was finally giving me a sense of relief is now gone,” said Jessica Godsill, whose 9-year-old son has a rare condition and needs constant care. “We were just basically told: ‘These are your children. This is your responsibility. It’s all on you.’ “

Before the COVID-19 pandemic, parents and spouses were prohibited from being paid caregivers to their family members under federal and state Medicaid rules. During the pandemic, federal regulators allowed more flexibility for legally responsible adults to provide paid care for their family members.

The program was popular, and before it ended, hundreds of Idaho families took advantage.

Families who qualified for the program are still eligible for personal care services, but they must find outside caregivers — a known challenge in Idaho, which has a shortage of such workers. Personal care services can include help with bathing and dressing, toileting, eating and other essential activities.

Parents who spoke to the Statesman said they have struggled to find outside care. Some also said it’s hard to trust that others will be able to provide the care that their children need. Others have found a relative to help, but can’t fill all of their approved hours.

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’s reimbursement rates for care providers also pale in comparison to some neighboring states.

In June, the Department of Health and Welfare told the Statesman that only about half of the nearly 900 people using the Family Personal Care Services program when it ended had direct care workers paid for by Medicaid.

Rep. Ilana Rubel, D-Boise, who sponsored the bill last session to restore the program, said she hopes to bring it back this year. The bill previously proposed had input from the Department of Health and Welfare, families who used the program and other stakeholders, she said, but the chair of the Health and Welfare committee did not hold a hearing for it as lawmakers searched for budget cuts.

“We just need to get the state to stop bankrupting itself with reckless revenue reductions and actually leave us with enough revenue to be able to provide basic services like this,” Rubel told the Statesman. "These families need it desperately. There’s no question in my mind about that, and we owe it to them. It’s unconscionable that we’re leaving these families in the lurch like this.”

Rubel said because the families are already qualified to have these services provided by a third party, the program should theoretically not cost the state much additional money. The fiscal note on last year’s bill said Idaho reimburses personal care services at about $24 per hour, but caregivers earn less due to other costs that rate must cover.

Idaho families are continuing to fight to get the program back ahead of the next legislative session.

These are five of their stories.

‘Haven’t been able to make ends meet’

Challis Hopwood’s son spent 110 days in the neonatal intensive care unit when he was born prematurely. Doctors thought he’d live for days. Today, Leon is almost 5.

Leon has quadriplegic cerebral palsy, skeletal dysplasia and microcephaly. He is nonverbal and can’t walk or hold his head up on his own, making him fully dependent on his wheelchair.

Hopwood learned about the FPCS program about a year before it ended, and enrolled. She qualified for 15 hours of care per week by the end of the program, she said. It doesn’t sound like much, but the extra money meant the family could pay their bills and put a little aside for Leon’s needs. At the time, they were trying to save for a wheelchair-accessible van.

“I have to do the job either way. Paid or unpaid, I’m still doing this job,” Hopwood told the Statesman. “Since the program ended, we haven’t been able to make ends meet.”

Hopwood’s husband works full time, but it’s difficult for the family to live on his salary alone, especially with their son’s needs. When the FPCS program ended, Hopwood said, their church stepped in to help them get an accessible van.

For a while, Hopwood was working a few side jobs. She ran a mobile petting zoo business, and would bring her son with her. But recently, she had to stop. Leon is sensitive to sunlight, and she couldn’t keep bringing him. She had no one who could care for him during that time.

“It just got to the point that I had to choose if I wanted to continue to be Leon’s mom or if I wanted to try and make ends meet with our finances,” she said. "I love him too much.”

The family lives in Sweet, about an hour from Boise, and haven’t been able to find any outside caregivers.

Hopwood said there was even a time when she wondered if she could continue to afford her son’s care. The family has been relying on government assistance programs, including the Supplemental Nutrition Assistance Program, sometimes referred to as food stamps, and Medicaid. They have also gotten loans from family members.

“I was raised conservative, so I wanted to be doing my part and being a taxpaying citizen,” she said. “And so when I was doing the FPCS program, I feel like I was able to be paid for the job that I’m doing, but still contribute to society, versus now, we’re on the welfare program, and I’m doing the same job, but not getting paid for it.”

She recently had to cancel a few of Leon’s therapies because she couldn’t afford the gas to get there.

Hopwood fought to keep the Family Personal Care Services program in place for her and other families, she said. She posted on social media to bring awareness and shared her story. She has seen comments from people who don’t understand why she would need to be paid to care for her child. But there’s so much more to it, she said.

“I have two other kids and they’re perfectly healthy, but Leon’s care is like four times as much as they are. We joke that he’s four kids in one,” she said.

“Nobody is exempt from being disabled,” she added.

She tries to make money here and there, such as through selling old clothing — anything where she can make a little pocket change.

But the expenses pile up. The family is still trying to get Leon’s bedroom adapted to fit his needs. They’ve been late on their mortgage a few months, and have then had to deal with late fees. She’s not sure how they’ll survive through the winter.

“There’s no light at the end of the tunnel. We’re never going to get out of debt,” she said. “It’s like we’re constantly living above our means because we can’t keep up with his therapies. Just losing the program was like getting the carpet yanked up from under us, and we fell on our butt.”

One month recently, Hopwood said, it looked like they wouldn’t be able to pay their power bill but she found a little extra money in her pants pocket. It was just the right amount.

‘Still not a workforce’

At the end of May, Trixy Wade’s daughter, Harper, 11, was in the hospital for over two weeks. She needed surgery for severe scoliosis.

Harper was born at 1.5 pounds and has brain damage that caused cerebral palsy and affected all of her limbs, Wade, who lives in Nampa, 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 got discharged, the hospital staff told Wade that Harper would need two people to care for her for the next few months. The surgery meant that she needed to be lifted and cared for in specific ways so as not to injure her. But Wade and her husband have been working opposite shifts since the FPCS program ended so someone is always home with Harper.

“We’d never been in a predicament where we needed two of us there, and I lost the one person that was always there when (my husband) had to go work nights,” Wade said. “So I’m just like, ‘Who do we depend on?’ ”

Wade said Harper’s grandparents helped out, but some of the care Harper needs requires lifting and moving her. Wade tried to find an outside caregiver to help when the program ended. She hasn’t been successful.

...

Shannon French helps her daughter make lunch, a task that Ruby, 15, diagnosed with Down syndrome, needs help with as she learns to be more independent. French also has a special needs son. With a shortage of professional services to help families, the Idaho Department of Health and Welfare has provided funding for parents who need to care for their children.

Darin Oswald/Idaho Statesman/TNS

“It’s been a challenging time,” she said. “The (personal care services) program, it works if it works, right? And it only works if there’s providers or a workforce out there, and there’s still not a workforce. So, we had to find our own workforce.”

If the FPCS program was in place, she said, they could be more like an actual family.

“My husband and I could be husband and wife, not just like a care facility,” she said, “and we would have each other to depend on.”

Wade said she wishes legislators better understood what it means to raise children with disabilities who require this type of care. Harper needs a lot, she said, but she is also a happy, loving child who brings joy to those around her and deserves to be treated as a person.

“I wouldn’t understand it if I didn’t have Harper. Nobody else in my family has ever been disabled in the way that she is, and so I wouldn’t understand it or what it takes,” she said. “I wish they would understand what it really took.”

‘They don’t see the daily struggles’

In March, Angela Ramirez sent an email to the chair of the House Health and Welfare Committee pleading for a hearing for the bill to restore the Family Personal Care Services program. She wrote that impeding the progress of the bill was silencing the voices of Idahoans with disabilities and their families.

Then, she explained that she is a single mom of seven trying to care for the two children she still has at home. She has a 4-year-old boy who is autistic and nonverbal with aggressive behaviors, she said. Her teenage daughter is also autistic and has POTS, an autoimmune disorder, along with cerebral palsy.

When the FPCS program was in place, Ramirez, of Nampa, said, it was a “relief” for her and her kids.

“I could stay home and take care of them the way that they needed,” she said.

Over the past year, she has faced one obstacle after another. She was working, but she kept getting calls from her son’s school, and would have to leave work and lose hours. Then, her son was kicked out of school over behavioral issues.

She had outside caregivers who she said didn’t provide adequate care for her kids. Once, she came home to her daughter on the floor, passed out, with the caregiver standing over her, she said. Ramirez immediately called 911. If she didn’t come in at the right time, she said, her daughter could have died. Another time, she said, her son was given something he was allergic to and broke out in hives.

“They just weren’t caring for the children, my kids, like they should have,” she told the Statesman. “It put my kids in more danger.”

Her older daughter recently moved back to Idaho and has been able to help care for her kids. There aren’t enough caregivers, she said. Ramirez also decided to open up her own daycare for kids with different abilities, so she could still be home with her children.

But paying the bills remains a challenge. There are things her daughter needs, like salt tablets and vitamins, that aren’t covered my Medicaid and are expensive. She still has to buy food and other necessities.

Lawmakers who don’t have children with disabilities, she said, don’t understand.

“Every disability is different in every child,” she said. “They don’t see the daily struggles that my daughter has mentally, physically, and emotionally. … POTS syndrome, it is very, very debilitating to her life. She can’t go out if it’s too hot. She can’t ever jump on a trampoline. She can’t go get her heart up, like running. She can’t play soccer like she used to. She can’t do any of that.”

‘Massive change in him’

Over the past year, Jessica Godsill’s son’s separation anxiety has grown worse as she has to leave him for long bartending shifts, she said. He doesn’t sleep until she’s home, which might not be until around 5 a.m. Then, they both have to be up for his therapies hours later.

Godsill’s son, Liam, 9, has an incredibly rare genetic micro deletion that she believes is the only case like it in the world, so it comes with a lot of unknowns. He has severe hypotonia, or very low muscle tone and stiff joints. He is nonverbal and uses a feeding tube to get most of his nutrients. He can eat certain pureed foods. His favorites, naturally, are chocolate pie and cookies and cream ice cream, Godsill, who lives in Nampa, said.

Godsill can’t hold down a full-time job with her son’s needs, and having to work different side jobs that affect her son’s schedule and routine has taken a “massive toll” on her family, she said.

“We’ve really noticed a massive change in him over this past year,” she said, noting his sleep deprivation has been especially detrimental. Over the past year, she said, her son’s therapists have seen a slight decline because he’s overly tired. He has started to have more behavioral issues.

She used to be able to leave him more easily for short periods of time, but now, he panics and throws a fit when she leaves. “That just breaks my heart,” she said.

This summer, her son needed three surgeries that the family traveled to Utah to receive. He’s still healing, and Godsill hasn’t been able to work for 10 weeks. Her son qualifies for nursing hours, too, but she hasn’t been able to find a provider to fulfill those that works with her family. And it’s hard to bring someone in who she has to put her full trust behind, she said. Liam can’t talk or tell her if something isn’t right. He can’t let her know if he was hurt.

“As a single parent, it’s all on me,” she said. “Not having any of the support that we need has been awful, to be honest. … It’s been hard to figure out how to juggle everything when you have a child who needs 24/7 care.”

Godsill moved in with her parents a few years ago after going through a divorce. When the FPCS program ended, she said, that “little bit of relief” she felt was gone. She can’t be in two places at once, working a full-time job while also providing for her son’s needs.

“There are no caregivers. There are no nurses. There are no schools that he could just go be at all day,” she said. “So it really puts us in a really hard spot.”

A parent shouldn’t have to choose between being financially stable and taking care of their child, Godsill said.

‘We’re all just exhausted’

When the FPCS program was in place, it was the first time since Angie Hodge’s now 12-year-old daughter was born that she felt like her family could be financially secure. Her daughter has a genetic disorder called DiGeorge syndrome, has had open-heart surgeries, has cerebral palsy and has ridden in an ambulance more times than she can remember.

During the COVID-19 pandemic, Hodge, who lives in Idaho Falls, found out about the FPCS program and enrolled. She could finally step away from some of her side hustles, take care of her finances and her family and have a little room to breathe.

Since the program ended, she’s had to take up more side jobs, as has her husband. She has a face-painting business and started cleaning Airbnbs. Her husband works full-time as an engineer, but he started taking on shifts with Amazon to make extra money.

“We’re just struggling more to meet all of our family’s needs,” she said.

Hodge’s daughter qualifies for 30 hours per week of personal care services, she said, but she hasn’t found someone to cover those hours.

“Because she requires so much care, there’s no way I can work outside the home, so we’re basically just kind of stuck,” she said.

What has been most frustrating, she said, is to see people online say things like, “Oh, you should just take care of your own kids,“ she said. The care she provides isn’t the typical parenting that involves changing diapers or cleaning up after toddlers.

“We’re doing that, too. We’re doing all that stuff. But who out there is still changing their 12-year-old’s diapers in the morning and bathing them and doing like … physical therapy and occupational therapy and managing five or six different medications that she has to take from different places,” she said.

Hodge’s daughter is spunky and loving, she said. She’s full of joy and wants to “do everything.” She has zest for life. She loves art, singing and dancing, and is extremely goal-oriented.

Hodge gets why people question why a program like FPCS is needed, but for her family and many others, she hopes they try to understand.

“I’ve met so many families, and the vast majority that I know are just amazing people who are trying to keep their kids alive, and they’re doing everything they can,” she said, “and we’re all just exhausted.”