Kristine Fifer nearly went bankrupt in 2018.

Her son Eddie turned 22 that year and lost the state-provided nurse he had relied on. Maryland health officials told Fifer that Eddie no longer qualified for nursing care. That was despite his cerebral palsy, his feeding tube, and other conditions that require care around the clock. Fifer lost her job trying to cover the gap. The bills stacked up. She took on debt and eventually called a lawyer about filing for bankruptcy.

"I lost everything," Fifer, who also has a 13-year-old son, told STAT.

What saved her was a Medicaid program called self-direction. It lets waiver participants like Eddie and their families manage their own care. It also lets the state pay relatives for that care. The program did not erase Fifer's debt. But it stopped the foreclosure calls. She was able to hire her mother and a family friend to help look after Eddie.

Eight years on, that safety net is being pulled away.

What Maryland is proposing

The Maryland Department of Health's Developmental Disabilities Administration proposed sharp wage cuts for family caregivers earlier this summer. Some caregivers are looking at pay reductions of $20 per hour.

The new wage tables were set to take effect July 1. Pushback from disability advocates delayed them to October. Advocates argue the cuts leave families with an impossible choice: go bankrupt, or place a disabled relative in an institution. Institutional settings often carry higher rates of abuse and neglect.

Fifer put it plainly to STAT. "With these new cuts, I'm done. I'm going to foreclose." Her options, as she sees them, are to hold out until the bank removes her from her home, or to institutionalize her son.

Roughly 3,900 people in Maryland self-direct their Medicaid services. Many are mothers caring for an adult child. The proposed cuts have some of them regretting that they ever enrolled.

"I was never told that every year there was going to be some budget meeting, that your salary could be cut," said Monique Duell, who cares for her son Jeremiah. He has cerebral palsy and is nonverbal. "Had I known a lot of these things beforehand, I probably would not have run with this program."

Pay depends on the type of care provided, such as nursing, personal care, or community development. The proposed budget lowers wages across the board. Shari Dexter, a co-founder of Concerned Citizens of Self-Direction Maryland, told STAT she has heard from people facing a drop from about $47 per hour to $29.98.

Duell's rate would fall from roughly $41 per hour in 2024 to that same $29.98. She lives in Prince George's County, where the cost of living keeps climbing. Because her son's care is so involved, she cannot take a job outside the home. "How am I supposed to sign a full mortgage when I don't know from one year to the next what my salary is going to be?" she said.

Maryland officials did not answer STAT's questions about why the wages were cut, or whether the state might reverse course after the pushback. Earlier this year, lawmakers said the budget for home and community-based services had to shrink or the state would lose its ability to offer Medicaid waivers. A Baltimore Sun investigation suggested that was not accurate.

A Maryland Department of Health spokesperson said the agency is committed to supporting the health, safety, and independence of waiver participants, and that its approach to the 2027 budget would keep evolving alongside federal guidance and stakeholder feedback.

This is not just Maryland

Other states are moving in the same direction. All of the following introduced 2026 proposals that would sharply cut pay for family caregivers and community care:

Ohio lawmakers went further and proposed banning family members from being certified caregivers at all. They later dropped the measure.

The common thread is a deadline. The 2025 GOP-backed tax bill included a $1 trillion cut to Medicaid funding that takes effect on January 1, 2027. State health departments are now bracing for it.

"We know from the past that whenever the federal government reduces Medicaid, almost every state has made cuts to home and community-based services, and that those optional services include paying family caregivers," Kim Musheno, senior director of Medicaid policy at The Arc, a national nonprofit for people with intellectual and developmental disabilities, told STAT.

The vulnerability is structural. Home and community-based services are optional under Medicaid, not mandatory. That makes them an easy target when budgets tighten.

The fraud claim

Disability advocates warned early in President Trump's second term that these services would take the hit. The administration has since gone after family caregivers directly. In April, Health Secretary Robert F. Kennedy Jr. said Medicaid programs that pay family caregivers are "rife with fraud" and that caregivers were being paid for work they used to do for free.

Kennedy was not talking about the self-direction program specifically. And there is no data on how much fraud exists in this kind of care.

What the numbers do show is growth. Enrollment in self-directed care has doubled over the past decade to more than 1.5 million people, according to a 2024 report from AARP. Eligibility varies by state and by medical condition. The program is most widely used by people with intellectual and developmental disabilities who have high care needs.

That population is already financially exposed. People with disabilities are generally poorer than people without them. They are also more than twice as likely to carry medical debt.

The human cost

Advocates are lobbying the Centers for Medicare and Medicaid Services to pause the changes. Some have taken the fight to unusual places, including ads mounted on barges that float past the shoreline in Ocean City, Maryland.

The people doing this work are exhausted. Duell said the stress of caring for her son has caused gut pain and heart palpitations. Treatment has pushed her debt to nearly $40,000, and she is about to lose close to a quarter of her income. She says she is at risk of losing her home, which would put Jeremiah at risk of ending up in an institution.

The stakes get darker than that. Fifer recalled a parent who had thought about buying a life insurance policy and dying by suicide, in the hope the payout would provide for their disabled child. Most life insurance policies will not pay out for a suicide that occurs within a set number of years after the policy begins.

Fifer said she has felt that same darkness.

"It's like some people feel like they're worth more dead than alive to be able to take care of their loved ones," she said.
Support is available If you or someone you know may be considering suicide, contact the 988 Suicide & Crisis Lifeline: call or text 988, or chat at 988lifeline.org. For TTY users: use your preferred relay service or dial 711 then 988.

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