Melissa Gonce remembers the calls. She would stand in her Parkville, Maryland home, phone pressed to her ear, asking where her son Jason was. The van from his day program was hours late. When it finally arrived, Jason was often slumped over, his pants soaked, his fingers raw from biting. Jason is 28, nonverbal, and profoundly disabled. He needs constant supervision and help with every basic task.
Six years ago, Gonce enrolled in a Medicaid program that changed everything. The state began paying her roughly $67,000 annually to serve as Jason's primary caregiver. She could stay home, watch him closely, ensure he was clean and fed. His seizures stabilized. He stopped coming home in distress. "The program saved my family," she said.
Now that stability is crumbling. Maryland slashed $126 million from developmental disabilities services this spring, forcing sharp cuts to caregiver wages and limiting the hours families can bill to the state. Starting July 1, Gonce's pay drops by more than 25 percent. She faces an $18,000 annual loss at a time when housing, food, and utilities are consuming more of her budget.
"Now I'm faced with a huge decision," Gonce said. Can she keep her son at home on less money, or does she send him back to a program she believes failed him?
Gonce is not alone. Michele Gregory and her husband care full time for their 31-year-old son Nick, who has severe epilepsy and profound developmental disabilities. They expect their household income to fall by more than $80,000 under the Maryland cuts. Other families across the country report similar shocks as states tighten budgets and federal pressure mounts on Medicaid spending.
President Donald Trump's spending package, signed last year, is expected to cut Medicaid funding by roughly $1 trillion over the next decade. States already struggling with rising costs now face impossible decisions. Maryland, under Democratic Gov. Wes Moore and the state Legislature, chose to reduce what it pays family caregivers.
The state said the cuts were necessary. Amanda Hils, a spokesperson for the Maryland Department of Health, noted that programs supporting people with disabilities have grown by more than 144 percent over the past five years. The reductions aim to ensure long-term stability, she said.
But advocates warn the cuts will create chaos. Molly Morris, co-founder of the Self-Direction Center, which backs Medicaid programs allowing recipients to manage their own care, framed the threat starkly. Family caregivers, she said, are the dam holding back institutional collapse. Pull them out and "the dam is going to break."
For decades, paying family members to provide care had bipartisan support. In the 1980s, the Reagan administration tapped Medicaid to create an alternative to institutionalization. Instead of placing disabled and elderly relatives in costly, often inhumane facilities, the government began funding in-home care and community services. States and the federal government split costs under what became known as home- and community-based services.
The system was never robust enough. Hundreds of thousands of people languish on waiting lists nationally. Low wages and demanding work made it hard to recruit workers. The pandemic deepened shortages. To close the gap, many states expanded options for family members to be paid caregivers. Families left jobs, restructured households, and built their lives around the income.
The expansion, however, triggered a backlash. As enrollment exploded and costs climbed, conservative critics began portraying the programs as wasteful and rife with fraud. Health Secretary Robert F. Kennedy Jr. said in April that Medicaid was paying family members for basic tasks "once done for free," calling such programs "rife with fraud." Conservative activist Christopher Rufo posted videos of California caregivers and claimed the state paid hundreds of thousands of people "to cook, clean, shop, and watch television with family members."
The rhetoric has shifted to policy. Vice President JD Vance announced Wednesday that the Trump administration was withholding $1.3 billion in Medicaid funds from California over fraud concerns in home care. Republicans on the House Oversight Committee demanded Ohio's Medicaid program explain why it pays family caregivers, citing a critical report from a conservative website.
Advocates acknowledge fraud exists in large government systems and should be addressed. But they dispute that family caregiving is uniquely vulnerable. Jason Resendez, president and CEO of the National Alliance for Caregiving, distinguished between being paid to raise a child and being paid to provide medical or intensive personal care. "This is getting paid to provide services that your child or your grandmother needs because of a serious illness or disability," he said. "And because there are few other options to provide that care, those other options are often much more costly."
Evidence supports the claim. Michele Gregory said that after she and her husband took over full-time care of their son Nick around 2017, his hospitalizations dropped from roughly 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.
Despite these examples, states facing budget pressure are moving forward with cuts. Gonce sat at her computer during Maryland's recent legislative session, scrolling through budget proposals and messaging with other parents fighting the reductions. It was not her first fight. Jason showed developmental delays as a baby. At 5, doctors diagnosed him with a rare chromosome disorder. Gonce fought to get him into specialized schools with intensive therapy. He learned to speak two words: "Mom" and "cake."
When he aged out of public school, the structure vanished. Gonce tried in-home care agencies, but low-wage workers cycled through quickly, never staying long enough to learn Jason's needs. Then she learned about Maryland's self-directed Medicaid waiver, which allowed her to control the funding herself. She became Jason's paid caregiver and hired a trusted worker to give herself occasional breaks. She picked up waitressing shifts to supplement income.
Now, with the wage cut and hours cap, Gonce faces a choice millions of caregivers are confronting. How long can she absorb the financial hit? Where will the money come from? And if she cannot stay home with Jason, what happens to him?
The cuts are not limited to Maryland. Casey Barrett, a single father in Colorado, structured his life around paid caregiving for his 14-year-old daughter. Families nationwide report similar pressures as federal policy tightens and state budgets shrink. Michele Gregory summed up the grim calculus: "I've never been under the illusion that we're ever going to get to retire. When you have a disabled child, you never retire from that job." Now, without the Medicaid income, she and her husband are scrambling to dip into retirement savings and find remote work just to stay afloat.
Author Sarah Mitchell: "The cuts reduce costs today but create far greater medical and institutional expenses tomorrow, and families bearing the weight of that trade-off have nowhere else to turn."
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