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.
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.
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,