CW: Fraud
When Idaho stopped paying Challis Hopwood for the care she provided for her disabled son, Leon, he still woke up needing the same care. The mortgage still had to be paid, the car needed gas, and there were therapy appointments to get to. What disappeared was the financial cushion that had helped her family hold everything together.
Leon is almost five. Born prematurely, he spent 110 days in the NICU (neonatal intensive care unit). He has quadriplegic cerebral palsy, skeletal dysplasia, and microcephaly. Hopwood received payment for 15 hours of his care each week through Idaho’s Family Personal Care Services program. Those hours represented only a fraction of the care she provided, but the additional income mattered.
Idaho ended the program last July after state officials cited fraud and abuse, along with limited resources to administer it. Families could still qualify for Medicaid-funded personal care, but parents and spouses could no longer be paid to provide it themselves. They had to find someone else.
For Hopwood, that hasn’t happened. She tried side jobs, including running a mobile petting zoo and bringing Leon with her, until his sensitivity to sunlight made that impossible. Her family has borrowed money, relied on public benefits, and fallen behind on the mortgage. Sometimes there hasn’t been enough money for gas to get Leon to therapy.
Her experience is part of a much larger story about who provides care in America and what that work is worth. According to AARP, family caregivers provide more than $1 trillion worth of unpaid care each year. Their days can include showering, medication administration, wound care, and tube feedings. There are also hours spent on the phone with doctors, specialists, and insurance companies, trying to coordinate what a family member needs.
Family caregiving can be meaningful and rewarding. It can also exist alongside a job, a caregiver’s own needs, other children, bills, and the everyday responsibilities that don’t disappear when someone needs extensive care. Loving a family member does not give someone unlimited time, energy, or financial security.
Yet family caregiving has also been discussed in terms of fraud. In April, Health and Human Services Secretary Robert F. Kennedy Jr. criticized Medicaid programs that pay relatives for caregiving, saying families were paid for things once done for free and calling the arrangement “rife with fraud.””
Fraud and appropriate oversight are legitimate concerns. So is the question of what happens when an outside caregiver cannot be found.
Idaho families have spent the past year living with that question. Trixy Wade and her husband work opposite shifts so someone can stay with their daughter, Harper. Angie Hodge cleans Airbnbs and runs a face-painting business while her husband also works. Single mother Jessica Godsill works bartending shifts that can stretch into the early morning, while her son, Liam, sometimes stays awake waiting for her to return.
Recognizing this work does not make disabled children burdens. Parents can love their children dearly and still be tired. A home can be filled with joy while a parent worries about the mortgage, groceries, or another tank of gas. Care can come from a place of deep love while still requiring time, skill, and sacrifice.
The political debate will continue, but these families are already living with its consequences. Their children will wake up tomorrow needing the same things they needed yesterday. The appointments, medications, and bills will still be there, woven into the routines of everyday life. No longer receiving a paycheck has never made any of that care disappear.
Sources:
Gonzales, Morgan. “ANCOR Rebuts RFK Jr.’s Remarks on CDPAP, Home- and Community-Based Services.” Home Health Care News, WTWH Media, 15 Apr. 2026, https://homehealthcarenews.com/2026/04/ancor-rebuts-rfk-jr-s-remarks-on-cdpap-home-and-community-based-services/.
Heasley, Shaun. “Family Caregivers Provide over $1 Trillion in Care Annually.” Disability Scoop, 13 Apr. 2026, https://www.disabilityscoop.com/2026/04/13/family-caregivers-provide-over-1-trillion-in-care-annually/31942/.
Savransky, Becca. “‘It’s All on You.’ Idaho Families with Disabled Kids Endure Hardships without Key Program.” Idaho Statesman, 15 Oct. 2026, https://www.idahostatesman.com/news/politics-government/state-politics/article317501845.html.