Families caring for disabled relatives face unthinkable choices as Medicaid cuts loom

PARKVILLE, Md. — Melissa Gonce used to cry when her son came home from his day program soaked in urine, dehydrated and distressed.

Jason, 28, is nonverbal and profoundly disabled, with significant cognitive limitations and little awareness of danger — vulnerabilities that require constant, watchful care.

Some nights, the van that was supposed to bring him home arrived hours late. Gonce would call and call, scanning the street, her mind racing. When he finally arrived, he was sometimes slumped over, pants wet down to his socks, his fingertips bitten raw.

Six years later, Gonce no longer worries about whether Jason is being cared for — because now she does the job herself. Under a Medicaid-funded program that allows families to be paid as caregivers, she earns about $67,000 a year to look after him full time, bathing, feeding and keeping him safe.

The program, Gonce said, “saved my family.”

Under his mother’s care, Jason’s seizures stabilized and he began making small gains in independence and daily routines. Her constant fears began to ease.

Jason's growing independence and his family's financial stability are threatened by looming Medicaid cuts, his mother says.Kyna Uwaeme for NBC News

Now, families like hers worry that stability could soon collapse.

A sweeping federal spending package signed by President Donald Trump last year — his “big, beautiful bill” — is expected to slash Medicaid funding by about $1 trillion over the coming decade, just as many states are already struggling with rising costs. At the same time, a growing chorus of conservative policymakers and activists has begun to question whether the government should pay family caregivers at all, portraying the programs as wasteful and prone to fraud.

The result, advocates warn, could destabilize services that keep millions of elderly and disabled Americans, including Jason, alive in their communities. For caregivers like Gonce, that could mean financial ruin and impossible decisions over whether they will be able to keep their loved ones at home.

Molly Morris, co-founder of the Self-Direction Center, which advocates for Medicaid programs that empower recipients to manage their own care, said attacking paid family caregiving could overwhelm a system that’s already strained, with too few workers and long waiting lists for services.

“OK, you want to pull their finger out of the dam?” she said of paid family caregivers. “The dam is going to break.”

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Trump’s Medicaid reductions will start hitting state budgets next year, forcing legislators to make difficult decisions about whom and what to cut. But some states aren’t waiting until then. Facing inflation-driven deficits and ballooning costs, states including Maryland are already making deep reductions to caregiving programs, offering a glimpse of the pain experts warn will soon spread nationwide.

Maryland officials slashed $126 million this spring from programs serving people with developmental disabilities, with much of the impact falling on families like Gonce’s.

Beginning July 1, the state will significantly reduce family caregivers’ wages and cap the number of hours they can be paid each week. The Democratic-controlled state Legislature and Gov. Wes Moore adopted the cuts after hearings in which dozens of disabled program recipients and their families pleaded with lawmakers to restore funding.

Amanda Hils, a spokesperson for the Maryland Department of Health, said the changes were necessary to rein in costs of programs supporting people with disabilities, which had grown by more than 144% over the past five years. The cuts aim to ensure the long-term stability of the programs, one of Moore’s “top priorities,” Hils said in a statement.

For Gonce, who is also raising a 14-year-old son while caring for Jason, that translates to roughly an $18,000 annual loss — at a time when rising costs for housing, food and utilities have already stretched her finances. Others in Maryland who rely on the program to pay multiple family caregivers say their household incomes may be cut by more than $80,000.

“Now I’m faced with a huge decision,” Gonce said.

Will she be able to weather the cuts and keep her son at home — or be forced to send him back into a program she believes failed him?

Tight budgets, growing attacks

Until recently, paying family members to care for disabled and elderly relatives had broad bipartisan support as a practical solution to a growing home-care crisis.

For generations in the United States, many people with severe disabilities were placed in institutions, out of sight and far from their families. The facilities were costly and often inhumane. That began to change in the 1980s, when the Reagan administration tapped Medicaid funds to create an alternative to institutionalization, paying for in-home care, day programs and other supports to help people live in their communities. States and the federal government split the costs.

That patchwork system, known as home- and community-based services, has long been stretched thin, with hundreds of thousands of people languishing on waiting lists nationally. Low wages, demanding work and uneven funding have made it difficult to recruit and retain workers — problems that deepened during the pandemic. To fill the gap, many states expanded options for family members to be paid to care for loved ones.

The shift solved a basic problem, advocates say. Instead of placing relatives in understaffed day programs or relying on a rotating cast of underpaid home-care workers, families could select people they trusted — often relatives or themselves — to provide consistent, one-on-one care.

Many built their lives around these programs, leaving careers or restructuring their households.

But as paid family caregiving has expanded, it has also drawn new scrutiny. Exploding enrollment drove up costs, squeezing state budgets. At the same time, a growing backlash has taken shape among conservatives in recent months, casting the programs as wasteful and vulnerable to abuse. Some have portrayed family caregivers as illegitimately cashing in on government largesse.

Health Secretary Robert F. Kennedy Jr. sparked outrage in April when he said Medicaid was paying family members to perform basic tasks they once did for free through programs he called “rife with fraud.”

Conservative activist Christopher Rufo, who has denounced California’s In-Home Supportive Services program as a “fraud magnet,” said on social media that the state was paying hundreds of thousands of people “to cook, clean, shop, and watch television with family members.” He then clipped and posted videos of caregivers who depend on the program.

“Influencers are teaching people how to quit their jobs, sign up for California’s IHSS program, and collect up to $63k/yr to stay home with family members,” Rufo wrote in one post.

The rhetoric has begun to translate into policy proposals and federal crackdowns.

On Wednesday, Vice President JD Vance announced the Trump administration was withholding $1.3 billion in Medicaid funds from California over fraud concerns, including in home care.

Gov. Gavin Newsom’s office rebuffed the action, writing on X that Vance was “attacking programs that keep seniors and people with disabilities OUT of nursing homes. Pretty sick.”

One day earlier, Republicans on the House Oversight Committee wrote to the director of Ohio’s Medicaid program questioning the validity of paying family caregivers following a critical report by a conservative website.

“These reports raise valid concerns that HCBS providers are not billing Medicaid for legitimate services, but are billing the federal government to ‘hang out with their own families,’” the lawmakers wrote.

A spokesperson for Ohio’s Medicaid program defended the state’s work to prevent waste and misuse, writing that the agency was “committed to ensuring that taxpayer funds are used responsibly.”

Advocates for paid family caregiving acknowledge that fraud exists in large government systems and agree it should be addressed. If oversight is insufficient, they say, it should be strengthened so that funding reaches the people who rely on it.

But they dispute that family caregiving is uniquely vulnerable, noting that relatives are often subject to the same oversight standards as outside workers, including training, certification and home visits.

“This is not getting paid to take care of your child,” said Jason Resendez, president and CEO of the National Alliance for Caregiving. “This is getting paid to provide services that your child or your grandmother needs because of a serious illness or disability. And because there are few other options to provide that care, those other options are often much more costly.”

Families brace for cuts

Throughout Maryland’s recent legislative session, Gonce was glued to her computer whenever she could steal a moment away from caring for Jason. She scrolled through complex budget proposals and messaged with other parents speaking out against cuts.

She had been here before, fighting for her son.

Jason's developmental delays became apparent after he was born.Kyna Uwaeme for NBC News

As a baby, Jason showed clear signs of developmental delays — struggling to hold up his head, sit upright or digest food. At 5, doctors diagnosed him with a rare chromosome disorder that left him disabled and dependent on others for nearly every aspect of daily life.

Gonce fought to get him into a specialized school where he could receive intensive therapies and one-on-one support. Jason is nonverbal, but he learned to say the two things he seemed to love most: “Mom” and “cake.”

When he aged out of the public school system, that structure vanished. Gonce was left scrambling to piece together care that would keep him safe while she worked full time as a commercial accounts manager.

After his day habilitation program shut down during the pandemic, she turned to in-home care agencies. But the low-wage workers who cycled through her house never stayed long enough to learn her son’s needs, she said. Just as one got up to speed, they would leave, replaced by another stranger she had to train from scratch.

Then someone told her about a program that offered a different way.

Under Maryland’s self-directed Medicaid waiver, Gonce could take control — directing the funding herself, paying her own salary as Jason’s primary caregiver and hiring a worker she trusted to give herself breaks. The income allowed her to stay home with Jason while picking up waitressing shifts a few nights a week to make ends meet.

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.

Michele Gregory and her husband work as full-time caregivers for their 31-year-old son, Nick.Courtesy Michele Gregory

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.

Casey Barrett, right, who works as a full-time caregiver for his 14-year-old daughter, Olivia, worries he won't be able to continue paying his mortgage following Medicaid cuts in Colorado.Courtesy Casey Barrett

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.

Anna Keyzer, bottom right, says her income would have been slashed by nearly $70,000 under proposed changes to Nebraska's Medicaid program. The loss would have made it difficult to continue caring full-time for her 21-year-old son, Simon.Courtesy Anna Keyzer

“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.

After checking his sheets to see if he had peed through his diaper, Gonce led Jason to the bathroom and sat him on the toilet. She pulled up a “Cocomelon” video on her phone and hit play. “Old MacDonald” looped as she reached for an electric razor.

“When you become a mom, you don’t imagine having to shave your 28-year-old son’s face,” she said, as Jason wiggled his arms to the music.

Caring for Jason has shaped every part of Gonce’s life. With his father living in Florida, there is no time off. No backup plan.

She has missed birthdays and nights out with friends. The demands have strained her relationships; she lives apart from her current husband. Her 14-year-old has grown up in the shadow of his brother’s needs, learning early on that plans can change without warning. Some days, Gonce shuts herself in the bathroom, slides to the floor and sobs.

Without the paid caregiving option, she doesn’t know how she would keep her head above water.

“This isn’t charity,” Gonce said. “This is survival.”

After shaving him, she helped Jason into the shower. Then she returned to his room and began stripping the soiled sheets off his bed.

“This is where self-directing makes life manageable,” Gonce said. “Imagine doing this every day and then going to a nine-to-five.”

She paused, thinking back to the years when she tried.

"I will sacrifice everything for my son," Gonce says. "I always have."Kyna Uwaeme for NBC News

At her desk at a corporate job, she would sit frozen, on the verge of tears: Was Jason safe? Was anyone looking after him? Once, she showed up at Jason’s day program unannounced and found him slumped in a corner, unattended and staring aimlessly.

Gonce shook the thought away.

There were sheets to wash. Medications to prepare. Bills to sort and pay.

She grabbed Jason’s hand and guided him toward the stairs.

“You ready?” she asked him. “Let’s get you your breakfast.”