BOISE, Idaho — It has been more than a year since the state of Idaho brought an abrupt halt to a critical program that allowed parents and spouses to receive financial compensation for the demanding, round-the-clock care they provided to their family members with severe disabilities.
The Idaho Department of Health and Welfare officially terminated the Family Personal Care Services program in July 2025. Agency officials cited instances of fraud and abuse within the system, alongside a lack of adequate staff and financial resources to properly administer and oversee it. During the subsequent legislative session, state lawmakers introduced a bill designed to revive the program by implementing stricter regulatory guardrails and oversight mechanisms. However, that legislative effort stalled completely and never received a formal committee hearing.
For the hundreds of families who once relied on the initiative, the intervening months have translated into an uphill battle for basic survival. Parents interviewed by the Idaho Statesman report struggling continuously to pay for essential housing and monthly utility bills. Many have been forced to take on exhausting night shifts and secondary side gigs just to make ends meet, a reality that has introduced immense friction into their households and negatively impacted the health and developmental progress of their medically fragile children.
Several parents expressed a bitter irony in their current circumstances, noting that the loss of the caregiver program has ultimately cost the state more money. Many have been compelled to enroll in broader government assistance programs or lean more heavily on alternative forms of care that are billed to the state at significantly higher reimbursement rates, such as specialized in-home nursing. The compounding stress has made an already difficult caregiving lifestyle exponentially harder.
“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 suffers from an extremely rare genetic condition requiring constant supervision. “We were just basically told: ‘These are your children. This is your responsibility. It’s all on you.’”
Before the onset of the COVID-19 pandemic, both federal and state Medicaid regulations strictly prohibited parents and spouses from acting as paid caregivers for their own family members. When the public health emergency unfolded, federal regulators introduced temporary flexibilities, allowing legally responsible adults to receive financial compensation for fulfilling these caregiving duties at home. The program proved immensely popular, and before its termination, hundreds of households across Idaho had integrated it into their daily lives.
Families who previously qualified for the Family Personal Care Services program technically remain eligible for standard personal care services through Medicaid, but with a major catch: they are now required to find outside, third-party caregivers. This mandate has run headfirst into a well-documented crisis in Idaho, which continues to grapple with a severe and persistent shortage of direct care workers. Personal care services typically encompass critical daily living activities, including assistance with bathing, dressing, toileting, and essential feeding.
Parents across the state have consistently reported that finding qualified outside help is nearly impossible. Beyond the logistical drought of available personnel, many caregivers express deep-seated anxiety over whether an unfamiliar worker can adequately understand and manage their children’s highly complex medical routines. While some families have managed to recruit a relative to help bridge the gap, these informal arrangements rarely cover all of the state-approved hours.
While the shortage of direct care workers is a nationwide phenomenon, Idaho’s predicament is particularly acute, as highlighted by a 2023 report from the Idaho Office of Performance Evaluations. Compounding the issue, Idaho’s reimbursement rates for care providers consistently lag far behind those offered in neighboring states.
Data provided by the Department of Health and Welfare in June revealed that only about half of the roughly 900 individuals who were actively utilizing the Family Personal Care Services program at the time of its cancellation had successfully secured Medicaid-funded direct care workers.
Rep. Ilana Rubel, a Boise Democrat who sponsored the legislative measure to restore the program, indicated that she intends to bring the bill back for consideration. She noted that the previous legislative proposal had incorporated direct input from the Department of Health and Welfare, affected families, and various community stakeholders. Despite this collaborative foundation, the chair of the House Health and Welfare Committee refused to grant the bill a hearing as legislative leaders prioritized sweeping 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 emphasized that because these families are already formally qualified to receive personal care services via a third party, restoring the family care program should theoretically impose minimal additional financial burden on the state budget. According to fiscal projections attached to last year’s legislation, Idaho reimburses personal care services at approximately $24 per hour, though individual caregivers ultimately net less once administrative and operational overhead costs are factored into the rate.
As Idaho families organize and prepare to lobby lawmakers ahead of the upcoming legislative session, the human toll of the program’s cancellation is reflected in the daily realities of households statewide.
‘Haven’t been able to make ends meet’
Challis Hopwood’s son spent 110 days in the neonatal intensive care unit after being born prematurely, a rocky start that led doctors to predict he would survive for only a matter of days. Today, Leon is nearly 5 years old. He lives with quadriplegic cerebral palsy, skeletal dysplasia, and microcephaly. Because he is nonverbal and cannot walk or hold his head up independently, he is entirely dependent on a wheelchair.
Hopwood discovered the Family Personal Care Services program roughly a year before it was dismantled and promptly enrolled. By the time the program concluded, she had qualified for 15 hours of care per week. While the allocation was modest, the financial compensation provided enough breathing room for the family to stay current on their bills and set aside modest savings toward 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.”
Although Hopwood’s husband maintains full-time employment, living on a single income has proven extraordinarily difficult given their son’s intensive medical demands. Following the termination of the state program, their local church stepped in to assist the family in acquiring a specialized, accessible vehicle.
Hopwood previously attempted to supplement the family’s income by managing a mobile petting zoo business, bringing Leon along with her. However, because Leon suffers from extreme sensitivity to sunlight, she was forced to abandon the enterprise when she could no longer find anyone to watch him.
“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.”
Residing in Sweet, roughly an hour outside of Boise, the family has been completely unsuccessful in locating outside caregivers. To survive, they have turned to government assistance initiatives, including the Supplemental Nutrition Assistance Program and Medicaid, alongside securing private loans from relatives.
“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.”
The financial squeeze has forced her to cancel several of Leon’s vital therapy appointments because the family could not afford the gasoline required to drive there. To generate pocket change, she sells used clothing online, but expenses continually outpace income. The family has fallen behind on their mortgage several times, incurring steep late fees, and Hopwood remains deeply uncertain about how they will navigate the coming winter months.
“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.”
‘Still not a workforce’
At the end of May, Trixy Wade’s 11-year-old daughter, Harper, spent more than two weeks hospitalized following major surgery to treat severe scoliosis. Harper was born weighing just 1.5 pounds and sustained brain damage that resulted in cerebral palsy affecting all of her limbs. She is entirely immobile, relies on continuous tube feeds directly into her jejunum, and deals with chronic seizures and scoliosis.
Upon discharge, hospital medical staff informed Wade that Harper would require two people to assist with her care routines over the ensuing months. The delicate nature of her spinal surgery meant she had to be lifted and handled according to strict clinical protocols to prevent severe injury. However, because the family care program was canceled, Wade and her husband have been forced to work opposing employment shifts so that one parent is always present.
“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?’”
While Harper’s grandparents have stepped in to help when possible, the physical demands of lifting and moving her safely exceed casual assistance. Wade’s attempts to secure professional outside care following the program’s end yielded no results.
“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 family care program remained active, Wade noted, her household could function more like a traditional family unit where she and her husband could rely on one another rather than operating around the clock like a medical care facility.
‘They don’t see the daily struggles’
In March, Angela Ramirez transmitted an email to the leadership of the House Health and Welfare Committee, pleading for a formal hearing regarding the legislation to restore the program. She argued that obstructing the bill effectively silenced the voices of Idaho residents with disabilities and their support networks.
As a single mother of seven, Ramirez focuses her daily attention on the two children still residing at home in Nampa. Her 4-year-old son has autism, is nonverbal, and exhibits severe aggressive behaviors. Simultaneously, her teenage daughter manages autism, postural orthostatic tachycardia syndrome—an autoimmune condition—and cerebral palsy.
While the family care program was operational, Ramirez described it as a profound source of relief that allowed her to remain at home and directly manage her children’s complex needs. Over the past year, however, she has encountered constant roadblocks. Employment efforts were repeatedly disrupted by urgent calls from her son’s school requiring her to leave work early, a cycle that culminated in her son being expelled due to behavioral challenges.
Her attempts to utilize outside caregivers proved alarming rather than helpful. On one occasion, she returned home to find her teenage daughter unconscious on the floor while a caregiver stood nearby, prompting an immediate 911 call. On another occasion, her son was inadvertently given an allergen, triggering a severe hive breakout.
“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.”
With her older daughter recently moving back to Idaho to assist, and having opened a specialized in-home daycare catering to children of varying abilities, Ramirez manages to stay home with her children. Nevertheless, financial stability remains elusive, with expensive medical necessities like specialized salt tablets and vitamins for her daughter going uncovered by Medicaid.
“Every disability is different in every child,” she said. “They don’t see the daily struggles that my daughter has mentally, physically, and emotionally.”
‘Massive change in him’
Jessica Godsill’s experience over the past year has been defined by her son Liam’s worsening separation anxiety, triggered by her long, irregular shifts working as a bartender. Liam, 9, lives with a profoundly rare genetic microdeletion alongside severe hypotonia, low muscle tone, and stiff joints. Nonverbal and largely dependent on a feeding tube, he requires continuous supervision.
Unable to maintain a traditional full-time schedule, Godsill relies on ad-hoc side jobs that disrupt her son’s strict routine, a dynamic she says has taken a heavy toll.
“We’ve really noticed a massive change in him over this past year,” she said, pointing to chronic sleep deprivation that has trickled down into her son’s therapy sessions, where professionals have noted a measurable decline in his engagement alongside escalating behavioral difficulties.
Medical travel to Utah for three complex summer surgeries further disrupted the household, keeping Godsill out of work for 10 weeks. Although Liam qualifies for professional nursing hours, Godsill has been unable to find an agency provider willing to staff the hours within her schedule. Furthermore, entrusting a vulnerable child who cannot speak to report mistreatment creates an overwhelming psychological barrier.
“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.”
‘We’re all just exhausted’
For Angie Hodge of Idaho Falls, the state’s family care program represented the first genuine period of financial security since her daughter was born 12 years ago. Hodge’s daughter lives with DiGeorge syndrome, has undergone multiple open-heart surgeries, manages cerebral palsy, and has logged numerous emergency ambulance transports.
Discovered during the pandemic, the program enabled Hodge to step back from peripheral side jobs and establish a stable financial footing. Since its cancellation, however, both Hodge and her husband have been forced to multiply their employment efforts. While her husband works full-time as an engineer, he has picked up secondary shifts with Amazon, while Hodge runs a face-painting venture and cleans vacation rentals.
Despite qualifying for 30 weekly hours of personal care services, Hodge has been unable to locate providers to fulfill the allotment.
“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.
Hodge expressed frustration with public misconceptions surrounding the necessity of paid family caregiving, emphasizing that the labor extends far beyond standard parenting duties into intensive clinical management, specialized therapies, and medication administration.
“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.”
