Raising Children With Disabilities Is Hard Work. Why Did Idaho Abandon Parents Like Me?

When our first child was born in 2010, my husband and I didn’t understand how profoundly disability would shape our lives.

As our son grew, he missed milestones and had frequent, epic meltdowns that left us both exhausted. At age 8, Owen was diagnosed as autistic (Owen is a pseudonym I’m using to protect his privacy). 

A year later, our daughter—born four years after Owen—received the same diagnosis. 

The medical picture grew more complex for both of them: Ehlers-Danlos syndrome, hearing loss, vision issues, and migraines. 

Like many families of disabled children, one parent had to step away from paid work to manage their care. For us, that was me. I’ve never felt like I was “just” my kids’ mom. I’m their case manager, care coordinator, teacher, chaos tamer, and nervous system soother. The repairer of drywall and hurt feelings. No one paid me for this labor. It was just what a “good mom” was expected to do. 

Until, that is, a transformative Idaho program changed everything.

Recognizing—and compensating—unpaid labor

In 2020, during the COVID-19 pandemic, Idaho expanded its Medicaid-funded Personal Care Service (PCS) Program to allow parents and spouses—so-called “legally responsible individuals”—to serve as paid caregivers for their disabled loved ones. 

Traditionally, the PCS program provides helpers to assist with non-medical tasks like bathing, grooming, doing laundry, and prepping meals. Idaho’s pandemic-era expansion was designed to support the medically vulnerable by allowing family members—who were previously barred from receiving federal funds for providing those services—to be paid. 

And when the federal public health emergency ended in 2023, the Idaho Department of Health and Welfare extended the Family Personal Care Services (FPCS) initiative, which is funded by Medicaid.

My family applied in 2024 after both of my children’s support needs increased significantly. Each child was approved for 25 hours per week of government-funded personal care support. By the state’s calculations, I provided 50 hours of care each week beyond what parents of non-disabled kids do.

For the first time, the hidden work I’d done for more than a decade was visible. 

But that acknowledgement came to an end when the state requested permission to cancel the program on Dec. 6, 2024. After approval by the Centers for Medicare and Medicaid Services, the program was officially terminated on July 15, 2025.

Thousands of caretakers like me are now waiting to see how the Idaho Legislature responds to the resulting crisis when their session begins in mid-January 2026.

‘We want to know our child is safe.’

Across the country, Medicaid-funded home and community-based service programs struggle to recruit and retain workers. This chronic workforce shortage, coupled with the high cost of institutionalized care, has prompted many states—among them Colorado, Arizona, and California—to allow family members to serve as Medicaid-paid caregivers. 

Research shows programs like these may improve continuity of care and reduce unnecessary hospitalizations. They can also help disabled people remain safely in their homes, as reported by Fair Care Idaho, a nonprofit I cofounded in 2025.

Idaho’s caregiver shortage is particularly severe. Medicaid reimbursement rates only allow caregivers to earn around $12 to $16 an hour. MIT estimates Idaho’s basic living wage for a childless adult to be $23 an hour. There simply aren’t enough trained workers willing or able to travel long distances to provide in-home care for so little money. 

Todd Achilles, a former Idaho lawmaker and current independent U.S. Senate candidate, said the Family Personal Care Services program was created to solve precisely this problem.

“There are not enough caregivers in the state, and the compensation is so low,” Achilles said. “This is a good, small government program that is efficient when the families do it.”

He argued that allowing parents and spouses to serve as paid caregivers recognizes both families’ right to care for their loved ones, and the state’s obligation to support that care in the most cost-effective way possible.

“It’s basic economics,” Achilles added. 

Even for families approved for government-paid services, there is often no one available to deliver them. That’s how I got approved by a home care agency at the rate of $16.50 an hour to take care of my own children. 

Becoming their full-time caregiver allowed me to focus on them, rather than juggling the multiple freelance contracts I held to make ends meet while my caregiving duties were unpaid.

Prioritizing their daily care enabled me to identify worsening health issues before they escalated, consistently follow through on therapies, and help my kids practice independent self-care skills. 

Their care became proactive instead of reactive. For the first time, we went more than a year without a hospitalization, emergency room visit, or surgery.

Trixy Wade, a mother and disability rights advocate from Idaho’s Treasure Valley, saw similar results when her husband became their child’s paid caregiver. Wade’s 10-year-old daughter, Harper, doesn’t speak, uses a wheelchair, and relies on a surgically placed feeding tube in her small intestine to eat.

When her husband was Harper’s paid caregiver, Wade told me in an email, the family didn’t have to “worry she’s being mistreated and can’t tell us,” fear that “she’s being touched inappropriately,” or wonder whether “her feeds are being administered properly.”

Families face impossible choices

On July 15, 2025, the Idaho Department of Health and Welfare terminated the Family Personal Care Service program, citing concerns about suspected fraud and limited oversight capacity. Disability advocates have been unable to verify these claims despite multiple public records (disclosure: those requests were filed primarily by a parents group that I am loosely affiliated with).

At the time, the state projected that the program would cost Idaho around $10 million a year. Approximately 55 to 65 percent of those funds went directly to caregivers’ wages, according to research by Fair Care Idaho. 

The remaining costs covered state-required administrative and nursing oversight provided by the home care agencies that serve as an intermediary between families and Medicaid. 

This change left approximately thousands across Idaho without caregiving support—again. The  state hasn’t publicly reported the exact number of participants, but estimates indicate some 1,200 children and over 200 adults with disabilities lost a lifeline. 

Like mine, Wade’s family now faces impossible choices. 

“We’re expected to work, parent, teach, and be full-time caregivers without support—and that’s not sustainable,” she said. “There are still no caregivers available, so the responsibility falls back on my husband and me.”

“It’s exhausting,” she added, “but what choice do we have?”

Lara Goers lives in Emmett, Idaho, a small town outside Boise. She tried for years to find reliable caregivers for her son, Pete. 

“It’s a huge challenge to get people to drive over the hill between Boise and Emmett, especially in the winter,” she told me. 

Even when she found candidates, they couldn’t meet Pete’s substantial needs. 

“I have never had a caregiver I could fully trust with Pete. Either they aren’t strong enough to lift him, can’t manage his behavior, can’t read him properly, or can’t be there for all the time we need support,” she said.

In January 2025, Idaho was cited by the U.S. Department of Justice for violating the Americans with Disabilities Act, finding that the state’s long-term care system unnecessarily segregates people with disabilities in nursing facilities and places others at serious risk of institutionalization. Federal investigators concluded Idaho had failed to provide adequate access to home and community-based services.

Just months after this citation, the Centers for Medicare and Medicaid Services approved the Idaho Department of Health and Welfare’s request to eliminate the Family Personal Care Services program—one of the few ways disabled Idahoans could consistently receive care in their homes.

A ‘solution’ that fails families

Since the program’s termination, Idaho families are back to cobbling together unsustainable and oftentimes unsafe care arrangements for their disabled loved ones. 

Survey research conducted by Fair Care Idaho finds that when care is delayed or inconsistent, medical costs increase, and health outcomes worsen. It also shows that families with one parent serving as an unpaid caregiver are more likely to rely on federal food, housing, and disability programs to make ends meet. All this is costly to the state.

Other research, both from the U.S. and abroad, has determined that rates of hospitalization, emergency care, and institutionalization rise. These outcomes also cost governments money. 

Ultimately, all of this increases pressure on Idaho’s already-strained medical and financial resources.

“We need a system that balances oversight with flexibility, so people aren’t left without safe, dependable care simply because they live in a small town or on a back road,” Jeremy Maxand, executive director of Idaho’s Living Independence Network Corporation, a nonprofit serving people with disabilities, told Rewire News Group in an email. 

“Choice matters, and families must remain part of the solution.”

The state’s proposed solution to ending FPCS is that non-legally responsible relatives—such as grandparents, aunts, or siblings—can step in as paid caregivers. For many families, that solution doesn’t exist.

Goers has no nearby family. Neither do I.

“I never get a break,” Goers said. 

I know the feeling. Idaho’s FPCS program made it possible to shoulder.

Caregiving and the gender wage gap

The economics of disability care have gendered consequences. 

More than 60 percent of unpaid care in the United States is done by women. A 2023 U.S. Department of Labor analysis found that unpaid family caregiving reduces a mother’s lifetime earnings by an average of 15 percent, and limits retirement savings—both factors that increase her lifetime risk of poverty. 

In Idaho, there is hope that legislators may restore some safety and stability to families of people with disabilities in 2026.

A Democrat-sponsored bill with bipartisan support will be introduced during the next Idaho legislative session, which begins Jan. 12, 2026. The bill would allow legally responsible individuals to once again serve as paid caregivers under Medicaid. 

We are already doing the work. Many of us are the only ones qualified and willing to provide it. 

I wish I could just be a mom to my children. But for them to thrive, I have to be much more than that. For a brief period, Idaho’s government recognized how much the state relies on the labor of parents like me. 

Compensating us for that work isn’t charity. It is, as Achilles said, basic economics. 

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