Idaho parents were paid to care for their disabled children. Those days are over

From 8 a.m. until late at night, Nathan Hill performs countless tasks for his 16-year-old son, Brady. Some of the tasks are small — things most people “take for granted that our kids can do,” Hill said, like popping Brady’s pimples when he gets acne outbreaks.

Others could mean the difference between life and death. A failure to properly maintain a tube into Brady’s windpipe, Hill said, could be fatal. 

The Meridian teen was diagnosed with brain cancer as a baby and suffered a stroke during surgery, leaving him permanently disabled, Hill told the Idaho Statesman. In the years since, he’s needed help through hourslong routines every day. In the morning, Hill helps Brady use the toilet, take a sponge bath, get dressed and eat through a tube entering his stomach. At night, Hill hooks Brady up to a ventilator and other machines to help him breathe.

For years, the family tried to patch together care for Brady however they could. Soon after Brady was diagnosed, Hill left his job as a remodeling contractor to find flexible jobs that would allow him to work from home, where he could oversee a revolving door of outside caregivers. When they call in sick or quit after a few weeks — a common occurrence, he said — he steps into the breach, often pulling all-nighters to regularly suction and clean Brady’s mouth and nose to keep him from aspirating while using his ventilator. Such an event could land him in the hospital with pneumonia, Hill said. 

Medicaid paid for those outside caregivers, but it wouldn’t pay for parents like Hill to do the work themselves — until the COVID-19 pandemic hit. In 2020, Medicaid made an exception to its rules, allowing family members to get paid to care for their disabled children or spouses. Finally, Hill said, he could provide his son with consistent, high-quality care and greater privacy, without outsiders coming in and out of their home at all hours. 

Now, those days are over. The Health and Welfare Department shuttered the program July 15, prompting families to scramble for alternative care. 

In a December letter to the Centers for Medicare and Medicaid Services, Health and Welfare officials asked the federal division to revoke the permission it granted for parents in the state to serve as paid caregivers. Idaho officials in their letter said the program’s cost ballooned from about $6 million in 2022 to over $24 million in 2024, which they attributed in large part to parents committing fraud. 

The department “cannot continue to operate a program with such high rates of suspected and known fraud and abuse,” its 2024 letter read. “In the role as stewards of taxpayer dollars and oversight of this program serving vulnerable children and adults, the (department) has determined the most appropriate action is to move to terminate this expenditure authority.”

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This story was originally published by the Idaho Statesman. To read more, click here.