{"id":444,"date":"2026-05-15T22:04:23","date_gmt":"2026-05-15T22:04:23","guid":{"rendered":"https:\/\/jacksonvillemovingnews.com\/?p=444"},"modified":"2026-05-15T22:04:23","modified_gmt":"2026-05-15T22:04:23","slug":"families-caring-for-disabled-relatives-face-unthinkable-choices-as-medicaid-cuts-loom","status":"publish","type":"post","link":"https:\/\/jacksonvillemovingnews.com\/?p=444","title":{"rendered":"Families caring for disabled relatives face unthinkable choices as Medicaid cuts loom"},"content":{"rendered":"
\n

Melissa Gonce used to cry when her son came home from his day program soaked in urine, dehydrated and distressed.<\/p>\n

Read more Son of elderly Miami woman missing since 2023 arrested for using her benefits, cops say<\/a><\/p>\n

Jason, 28, is nonverbal and profoundly disabled, with significant cognitive limitations and little awareness of danger \u2014 vulnerabilities that require constant, watchful care.<\/p>\n

Some nights, the van that was supposed to bring him home arrived hours late. Gonce, of Parkville, Maryland, 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.<\/p>\n

Six years later, Gonce no longer worries about whether Jason is being cared for \u2014 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.<\/p>\n

The program, Gonce said, \u201csaved my family.\u201d<\/p>\n

Under his mother\u2019s care, Jason\u2019s seizures stabilized and he began making small gains in independence and daily routines. Her constant fears began to ease.<\/p>\n

Now, families like hers worry that stability could soon collapse.<\/p>\n

A sweeping federal spending package signed by President Donald Trump last year \u2014 his \u201cbig, beautiful bill\u201d \u2014 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.<\/p>\n

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.<\/p>\n

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\u2019s already strained, with too few workers and long waiting lists for services.<\/p>\n

\u201cOK, you want to pull their finger out of the dam?\u201d she said of paid family caregivers. \u201cThe dam is going to break.\u201d<\/p>\n

Do you have a story to share about Medicaid home care?<\/strong><\/em><\/em>Fill out this form<\/strong><\/em>.<\/strong><\/em><\/p>\n

Trump\u2019s 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\u2019t 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.<\/p>\n

Maryland officials slashed $126 million this spring from programs serving people with developmental disabilities, with much of the impact falling on families like Gonce\u2019s.<\/p>\n

Beginning July 1, the state will significantly reduce family caregivers\u2019 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.<\/p>\n

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\u2019s \u201ctop priorities,\u201d Hils said in a statement.<\/p>\n

For Gonce, who is also raising a 14-year-old son while caring for Jason, that translates to roughly an $18,000 annual loss \u2014 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.<\/p>\n

\u201cNow I\u2019m faced with a huge decision,\u201d Gonce said.<\/p>\n

Will she be able to weather the cuts and keep her son at home \u2014 or be forced to send him back into a program she believes failed him?<\/p>\n

Tight budgets, growing attacks<\/strong><\/h2>\n

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.<\/p>\n

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.<\/p>\n

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 \u2014 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.<\/p>\n

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 \u2014 often relatives or themselves \u2014 to provide consistent, one-on-one care.<\/p>\n

Many built their lives around these programs, leaving careers or restructuring their households.<\/p>\n

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.<\/p>\n

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 \u201crife with fraud.\u201d<\/p>\n

Conservative activist Christopher Rufo, who has denounced California\u2019s In-Home Supportive Services program as a \u201cfraud magnet,\u201d said on social media that the state was paying hundreds of thousands of people \u201cto cook, clean, shop, and watch television with family members.\u201d He then clipped and posted videos of caregivers who depend on the program.<\/p>\n

\u201cInfluencers are teaching people how to quit their jobs, sign up for California\u2019s IHSS program, and collect up to $63k\/yr to stay home with family members,\u201d Rufo wrote in one post.<\/p>\n

The rhetoric has begun to translate into policy proposals and federal crackdowns.<\/p>\n

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.<\/p>\n

Gov. Gavin Newsom\u2019s office rebuffed the action, writing on X that Vance was \u201cattacking programs that keep seniors and people with disabilities OUT of nursing homes. Pretty sick.\u201d<\/p>\n

One day earlier, Republicans on the House Oversight Committee wrote to the director of Ohio\u2019s Medicaid program questioning the validity of paying family caregivers following a critical report by a conservative website.<\/p>\n

\u201cThese reports raise valid concerns that HCBS providers are not billing Medicaid for legitimate services, but are billing the federal government to \u2018hang out with their own families,\u2019\u201d .<\/p>\n

A spokesperson for Ohio\u2019s Medicaid program defended the state\u2019s work to prevent waste and misuse, writing that the agency was \u201ccommitted to ensuring that taxpayer funds are used responsibly.\u201d<\/p>\n

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.<\/p>\n

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.<\/p>\n

\u201cThis is not getting paid to take care of your child,\u201d said Jason Resendez, president and CEO of the National Alliance for Caregiving. \u201cThis 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.\u201d<\/p>\n

Read more Survivors take legal action after boat explosion at Haulover Beach<\/a><\/p>\n

Families brace for cuts<\/strong><\/h2>\n

Throughout Maryland\u2019s 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.<\/p>\n

She had been here before, fighting for her son.<\/p>\n

As a baby, Jason showed clear signs of developmental delays \u2014 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.<\/p>\n

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: \u201cMom\u201d and \u201ccake.\u201d<\/p>\n

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.<\/p>\n

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\u2019s needs, she said. Just as one got up to speed, they would leave, replaced by another stranger she had to train from scratch.<\/p>\n

Then someone told her about a program that offered a different way.<\/p>\n

Under Maryland\u2019s self-directed Medicaid waiver, Gonce could take control \u2014 directing the funding herself, earning a salary as Jason\u2019s 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.<\/p>\n

Now the wage she receives from the state is set to drop by more than 25%, down to $23.69 an hour.<\/p>\n

\u201cI can\u2019t absorb that,\u201d Gonce said. \u201cHow am I supposed to keep paying my bills?\u201d<\/p>\n

Advocates say paying relatives as caregivers doesn\u2019t just help families \u2014 it can save the government money.<\/p>\n

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\u2019s Eastern Shore, Gregory said, Nick\u2019s health improved and his hospitalizations dropped from about four times a year to once every 12 to 18 months.<\/p>\n

\u201cThat saved Medicaid somewhere between $300,000 to $400,000 a year,\u201d she said.<\/p>\n

With Maryland\u2019s 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.<\/p>\n

For now, they plan to tap a retirement account to stay afloat while Gregory looks for remote work \u2014 whatever it takes to avoid sending their son back into a group setting.<\/p>\n

\u201cI\u2019ve never been under the illusion that we\u2019re ever going to get to retire,\u201d Gregory said. \u201cWhen you have a disabled child, you never retire from that job.\u201d<\/p>\n

Families across the country say they\u2019re facing similar decisions.<\/p>\n

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 \u2014 from tube feeding and diaper changes to constant monitoring for seizures and respiratory distress.<\/p>\n

Under Colorado\u2019s Medicaid home-care program, which has been one of the nation\u2019s most generous, Barrett logs up to 112 hours a week as his daughter\u2019s 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 \u2014 a reduction that Barrett says will make it difficult to continue paying his mortgage.<\/p>\n

Colorado officials have presented the changes \u2014 part of broader Medicaid cuts to close a $1.5 billion shortfall \u2014 as necessary to \u201cmanage rising costs, promote fairness, and ensure that caregivers and members alike are supported.\u201d<\/p>\n

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 \u2014 work that must be done, whether it\u2019s by him or someone else.<\/p>\n

Given the shortage of home-care workers, sky-high turnover rates and the complexities of his daughter\u2019s care, Barrett doesn\u2019t think he\u2019ll be able to find someone to pick up the remaining hours, which means it\u2019ll be left to him.<\/p>\n

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 \u2014 labor that doesn\u2019t stop when she goes to sleep.<\/p>\n

\u201cI would welcome anybody to come try,\u201d he said. \u201cThere\u2019s no clock-in or clock-out. This is a continuous, nonstop job.\u201d<\/p>\n

Anna Keyzer, a Nebraska mother paid through Medicaid to care for her 21-year-old son, Simon \u2014 who is blind, tube-fed and prone to self-harming behaviors \u2014 said changes proposed late last year in her state would have forced her family into unthinkable choices.<\/p>\n

\u201cI can\u2019t just let Simon die, and so then I was like, \u2018We\u2019re gonna have to sell our house,\u2019\u201d Keyzer said. \u201cI don\u2019t know what we would do.\u201d<\/p>\n

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.<\/p>\n

\u201cWe feel like it\u2019s life or death,\u201d she said. \u201cWe\u2019re prepared to keep fighting, because we know what\u2019s at stake.\u201d<\/p>\n

Work that never ends<\/strong><\/h2>\n

On a recent Monday morning, Gonce flipped on the light in Jason\u2019s bedroom. He sat up and stretched his arms.<\/p>\n

\u201cYou were sleeping good, weren\u2019t you?\u201d she said softly.<\/p>\n

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 \u201cCocomelon\u201d video on her phone and hit play. \u201cOld MacDonald\u201d looped as she reached for an electric razor.<\/p>\n

\u201cWhen you become a mom, you don\u2019t imagine having to shave your 28-year-old son\u2019s face,\u201d she said, as Jason wiggled his arms to the music.<\/p>\n

Caring for Jason has shaped every part of Gonce\u2019s life. With his father living in Florida, there is no time off. No backup plan.<\/p>\n

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\u2019s needs, learning early on that plans can change without warning. Some days, Gonce shuts herself in the bathroom, slides to the floor and sobs.<\/p>\n

Without the paid caregiving option, she doesn\u2019t know how she would keep her head above water.<\/p>\n

\u201cThis isn\u2019t charity,\u201d Gonce said. \u201cThis is survival.\u201d<\/p>\n

After shaving him, she helped Jason into the shower. Then she returned to his room and began stripping the soiled sheets off his bed.<\/p>\n

\u201cThis is where self-directing makes life manageable,\u201d Gonce said. \u201cImagine doing this every day and then going to a nine-to-five.\u201d<\/p>\n

She paused, thinking back to the years when she tried.<\/p>\n

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\u2019s day program unannounced and found him slumped in a corner, unattended and staring aimlessly.<\/p>\n

Read more 7 hurt in crash with cement truck on ramp to I-95 in Fort Lauderdale<\/a><\/p>\n

Gonce shook the thought away.<\/p>\n

There were sheets to wash. Medications to prepare. Bills to sort and pay.<\/p>\n

She grabbed Jason\u2019s hand and guided him toward the stairs.<\/p>\n

\u201cYou ready?\u201d she asked him. \u201cLet\u2019s get you your breakfast.\u201d<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

Medicaid cuts and emerging attacks on paid family caregiving have people fearing financial ruin as they fight to keep loved ones out of institutions.<\/p>\n","protected":false},"author":1,"featured_media":443,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[25],"tags":[],"class_list":["post-444","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-trump-administration"],"yoast_head":"\nFamilies caring for disabled relatives face unthinkable choices as Medicaid cuts loom - Jacksonville Moving News<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/jacksonvillemovingnews.com\/?p=444\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Families caring for disabled relatives face unthinkable choices as Medicaid cuts loom - 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