Now the wage she receives from the state is set to drop by more than 25%, down to $23.69 an hour.
“I can’t absorb that,” Gonce said. “How am I supposed to keep paying my bills?”
Advocates say paying relatives as caregivers doesn’t just help families — it can save the government money.
Michele Gregory and her husband both care full time for their 31-year-old son, Nick, who has a rare and severe form of epilepsy and profound developmental disabilities, requiring continuous supervision. After they pulled him out of a day program and took over caregiving around 2017 at their home on Maryland’s Eastern Shore, Gregory said, Nick’s health improved and his hospitalizations dropped from about four times a year to once every 12 to 18 months.
“That saved Medicaid somewhere between $300,000 to $400,000 a year,” she said.
With Maryland’s new wage cuts and a 60-hour cap on the total number of caregiving hours a family can be reimbursed for each week, she and her husband expect their annual income to fall by more than $80,000.
For now, they plan to tap a retirement account to stay afloat while Gregory looks for remote work — whatever it takes to avoid sending their son back into a group setting.
“I’ve never been under the illusion that we’re ever going to get to retire,” Gregory said. “When you have a disabled child, you never retire from that job.”
Families across the country say they’re facing similar decisions.
Casey Barrett, a single father in Colorado, got his nursing assistant license and wrapped his life around caring for his 14-year-old daughter, Olivia, who has a rare neurological disorder requiring round-the-clock care — from tube feeding and diaper changes to constant monitoring for seizures and respiratory distress.
Under Colorado’s Medicaid home-care program, which has been one of the nation’s most generous, Barrett logs up to 112 hours a week as his daughter’s paid caregiver. After lawmakers approved a budget this spring that caps the number of hours a single caregiver can be paid each week at 56, his income could drop from about $162,000 a year to roughly $70,000 — a reduction that Barrett says will make it difficult to continue paying his mortgage.
Colorado officials have presented the changes — part of broader Medicaid cuts to close a $1.5 billion shortfall — as necessary to “manage rising costs, promote fairness, and ensure that caregivers and members alike are supported.”
Barrett has seen the criticism from those questioning whether the government should be paying parents to care for their own children and understands why his six-figure income might raise eyebrows. But he notes that his daughter qualifies under Medicaid for up to 155 hours of care each week — work that must be done, whether it’s by him or someone else.
Given the shortage of home-care workers, sky-high turnover rates and the complexities of his daughter’s care, Barrett doesn’t think he’ll be able to find someone to pick up the remaining hours, which means it’ll be left to him.
He doubts critics understand what that actually entails. A typical day includes lifting and repositioning his daughter, bathing her, managing her medical treatments and monitoring her vitals — labor that doesn’t stop when she goes to sleep.
“I would welcome anybody to come try,” he said. “There’s no clock-in or clock-out. This is a continuous, nonstop job.”
Anna Keyzer, a Nebraska mother paid through Medicaid to care for her 21-year-old son, Simon — who is blind, tube-fed and prone to self-harming behaviors — said changes proposed late last year in her state would have forced her family into unthinkable choices.
“I can’t just let Simon die, and so then I was like, ‘We’re gonna have to sell our house,’” Keyzer said. “I don’t know what we would do.”
Nebraska lawmakers ultimately backed off the plan to drastically limit paid caregiver hours after an outcry from families. But Keyzer said she fears the reprieve may be temporary, with sweeping federal Medicaid reductions rippling down to states in the coming years.
“We feel like it’s life or death,” she said. “We’re prepared to keep fighting, because we know what’s at stake.”
Work that never ends
On a recent Monday morning, Gonce flipped on the light in Jason’s bedroom. He sat up and stretched his arms.
“You were sleeping good, weren’t you?” she said softly.
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