BOISE, Idaho — More than a year after Idaho officials abruptly terminated a vital program that allowed parents and spouses to be compensated for providing essential care to their family members with disabilities, the human and economic toll on those affected continues to mount. The Idaho Department of Health and Welfare (IDHW) ended the Family Personal Care Services (FPCS) program in July 2025, citing concerns over potential fraud and abuse, as well as a lack of sufficient administrative staff and financial resources to sustain the initiative. While lawmakers attempted to revive the program during the most recent legislative session with a proposal that included new regulatory guardrails, the bill failed to receive a hearing, leaving hundreds of families in a state of deepening instability.
For families across the Gem State, the aftermath has been a harrowing transition from a sense of security to a daily battle for survival. Many parents report that the loss of the program has forced them into precarious financial positions, compelling them to pick up multiple side gigs or night shifts to cover basic housing and utility costs. Beyond the financial strain, these caregivers note that the inability to provide consistent, high-quality care—often due to the exhaustion of working multiple jobs—is negatively impacting the health and development of their medically complex children. Many parents also expressed a bitter irony: by stripping away the support that allowed them to care for their children at home, the state may now be incurring higher costs as families turn to more expensive, government-funded alternatives like professional in-home nursing or public assistance programs.
"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, a Nampa resident whose 9-year-old son suffers from an exceptionally rare condition requiring constant, specialized care. "We were just basically told: ‘These are your children. This is your responsibility. It’s all on you.’"
The FPCS program was born out of the COVID-19 pandemic, a period when federal and state Medicaid rules were relaxed to provide necessary flexibility for families. Prior to that, federal regulations generally prohibited family members from being paid as caregivers for their loved ones. During the emergency period, however, the program became a lifeline for hundreds of Idahoans who found themselves unable to secure outside help during a time of widespread labor shortages.
Even though families who qualified for the program remain eligible for personal care services through Medicaid, the policy requires them to source outside caregivers—a mandate that has proven difficult, if not impossible, to fulfill in Idaho. The state is currently grappling with a severe shortage of direct care workers, a crisis that has been well-documented. A 2023 report from the Idaho Office of Performance Evaluations highlighted that the state’s reimbursement rates for care providers are significantly lower than those in neighboring regions, making it difficult to attract and retain staff. According to data provided by the Department of Health and Welfare in June, only about half of the approximately 900 individuals who were utilizing the FPCS program at the time of its termination have been able to successfully transition to outside care workers.
State Representative Ilana Rubel, a Boise Democrat who sponsored the legislation to restore the program, remains committed to bringing the issue back to the floor in the upcoming session. She notes that the previous bill was crafted with significant input from the Department of Health and Welfare, families, and various stakeholders. However, the legislative process stalled when the chair of the Health and Welfare Committee declined to hold a hearing, prioritizing budget cuts over the program’s reinstatement.
"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 stated. "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 argues that the fiscal impact of restoring the program would be minimal, as these families are already entitled to state-funded care. By allowing parents to fill these roles, the state would essentially be redirecting existing funds rather than creating new ones. Despite this, families continue to struggle as they prepare for the next legislative session, hoping for a breakthrough that will prevent further financial and emotional ruin.
For Challis Hopwood, the reality of the program’s loss is measured in missed mortgage payments and the inability to afford basic therapies for her son, Leon. Born prematurely and now nearly 5 years old, Leon faces severe challenges, including quadriplegic cerebral palsy and microcephaly. Before the program ended, the 15 hours of care she was compensated for per week provided just enough cushion to pay bills and save for Leon’s specialized needs. Since the program was shuttered, those savings have vanished. Hopwood, who once ran a mobile petting zoo to supplement her income, was forced to abandon the business because she could not find someone to care for Leon during her shifts.
"I have to do the job either way. Paid or unpaid, I’m still doing this job," Hopwood explained. "Since the program ended, we haven’t been able to make ends meet." For Hopwood, the situation has led to a reliance on food stamps and loans from family members, a far cry from the life she envisioned as a self-sufficient taxpayer. "I was raised conservative, so I wanted to be doing my part and being a taxpaying citizen," she said. "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 struggle is shared by families across the state, including Trixy Wade of Nampa. Her 11-year-old daughter, Harper, who requires complex, round-the-clock care due to cerebral palsy and severe scoliosis, recently underwent major surgery. The hospital recommended two-person care for her recovery, but without the FPCS program, Wade and her husband have been forced to work opposite shifts to ensure someone is always present.
"My husband and I could be husband and wife, not just like a care facility," Wade noted, emphasizing that the lack of a reliable, outside workforce makes the state’s current policy untenable. "I wish they would understand what it really takes."
Angela Ramirez, another Nampa mother, echoed the frustration regarding the lack of legislative empathy. After being forced to quit her job to manage the behavioral and medical needs of her two children—one with autism and the other with POTS and cerebral palsy—she found that the outside caregivers provided through state services were often inadequate or dangerous. She recounted harrowing instances where she arrived home to find her daughter passed out or her son given food he was allergic to.
"They don’t see the daily struggles that my daughter has mentally, physically, and emotionally," Ramirez said. "Every disability is different in every child."
As families continue to advocate for the restoration of the FPCS program, the cumulative exhaustion is becoming impossible to ignore. Jessica Godsill describes a "massive toll" on her son Liam, whose separation anxiety has spiked as she is forced into long, late-night bartending shifts to keep the family afloat. The sleep deprivation and inconsistent routine have led to a decline in Liam’s progress in therapy, creating a cycle of stress that feels impossible to break.
"There are no caregivers. There are no nurses. There are no schools that he could just go be at all day," Godsill said. "So it really puts us in a really hard spot."
For Angie Hodge, an Idaho Falls mother whose 12-year-old daughter requires management of five or six different medications alongside physical and occupational therapy, the frustration lies in the public perception of her role. "We’re doing all that stuff," she said of the daily, intensive medical care. "But who out there is still changing their 12-year-old’s diapers in the morning and bathing them and doing physical therapy and occupational therapy?"
As the next legislative session approaches, these families remain united by a singular, exhausting reality. They are not asking for a handout, they argue, but for the recognition that their labor is a necessity—one that the state of Idaho is currently failing to support. "We’ve met so many families, and the vast majority that I know are just amazing people who are trying to keep their kids alive," Hodge said. "And we’re all just exhausted."
