When paid family caregivers lose their income, the work doesn’t disappear. It falls to whoever is left at home. For millions of families, that person is a child.
Lisa McCarty knows this firsthand. At 13, after her mother suffered a traumatic brain injury, she became her mother’s caregiver. “I was the parent,” she writes. “She was the child.“

She is not alone. According to the National Alliance for Caregiving and AARP, there are over 5.4 million children in the U.S. — especially girls — currently caring for chronically ill and disabled family members. Research shows this population has higher rates of depression, anxiety, substance use disorders, and suicide than their peers.

Neo, 16, has been caring for his father since he suffered a stroke four years ago. “Sometimes I get anxious and worry about what the future is going to be like,” he says. “I find myself losing focus and losing sleep because I’m worried about what’s going to happen to him. It’s hard to take care of someone as a child.”

An estimated 11.8 million Americans who require Medicaid are expected to lose critical coverage — including up to 4.3 million who rely on home and community based services. McCarty is direct about what that means: “The Republican proposal to further slash Medicaid would only create more adults like me, faced with childhood caregiving trauma that takes time, sometimes decades, to overcome.”

Professor Saul Becker, who has studied young carers for thirty years, puts it simply: “The U.S. needs to have an ideological and cultural belief that children are important.”

“The Trump Administration claims to prioritize children, but they need to act now to protect even the most unseen kids — the caregiving youth in the U.S. — before their mental health problems grow beyond repair.” — Lisa McCarty, TIME

Read the full story in TIME.

For millions of older Americans, Medicaid home and community based services are not a luxury. They are the only realistic way to get help with bathing, eating, dressing, and managing medications at home. Cut them, and there is nowhere else to turn.

KFF estimates that 5.1 million Medicaid enrollees used home care in 2023. Medicaid now pays about two-thirds of all U.S. spending on home and community based services — filling a gap that Medicare does not cover. The “One Big Beautiful Bill Act” is projected to reduce that funding by $911 billion over the next decade.

“Unlike the federal government, states are required to balance their budgets,” said Alice Burns, Associate Director of KFF’s Program on Medicaid and the Uninsured. “We don’t yet know how these cuts will play out.”

The workforce crisis makes it worse. Nearly one in three home care workers are immigrants. Since the immigration crackdown began, about 13% of paid home care workers report not going to work. Burns is direct: “It’s inconceivable that this won’t place a further strain on home care.”

And it isn’t just the people receiving care who are at risk. More than 8 million family caregivers — about 13% of the 63 million U.S. family caregivers — rely on Medicaid for their own health insurance.

When asked what percentage of waiver participants receive paid care from relatives, more than two-thirds of states could not provide data. They want to eliminate a program they cannot even measure.

Read the full report at Health Journalism.

H.R. 1 makes the largest cuts to Medicaid in the program’s 60-year history — nearly four times as large as any previous Medicaid cut. The bill cuts over a trillion dollars from Medicaid, Medicare, and the Affordable Care Act while also removing protections for nursing home residents. These massive cuts significantly harm access to health and long-term care for low-income older adults, people with disabilities, their caregivers and families in California.

Home and community based services are particularly at risk. During tough budget years, HCBS accounts for over half of all optional Medicaid spending. “We know from history that HCBS is cut when Medicaid funding is cut.” — Hagar Dickman, Director of CA Long-Term Services & Supports Advocacy, Justice in Aging

The catch-22 is deliberate and devastating. To qualify for a work requirement exemption, you need medical documentation proving your disability. To get that documentation, you need health coverage to see a doctor. “If you don’t have Medi-Cal because you aren’t working and can’t prove your disability, you are being put in a terrible position.”

In California alone, an estimated 3.4 million people will lose Medi-Cal coverage. The state will be forced to choose who to cut — and optional services like IHSS are always first on the list.

“We really need to be making noise and encouraging policymakers at every level to do everything they can to stop HCBS from being scaled back.” — Hagar Dickman, Justice in Aging

Read the full analysis from Justice in Aging.

More than 4 million people rely on Medicaid-funded home and community based services — including those with intellectual and developmental disabilities, older adults, and people with complex medical needs. Two-thirds of all HCBS funding comes from Medicaid. Cut Medicaid, and you cut the people who depend on it most.

The workforce is already in crisis. The HCBS workforce is expected to grow more than any single occupation in the coming decade — but turnover is already upwards of 80%. Roughly 40% of home care workers live in low-income households, and about one-third rely on Medicaid for their own health coverage.

“If we take more money out of the system, we’re likely to experience some degree of cuts to care and also to jobs that will worsen the recruitment and retention challenges that we’re already facing.” — Stephen McCall, Director of Research, PHI

“If you have physical, intellectual developmental disabilities, or if a family member does, where do you want to be? You want to be in your home. You want the freedom, you want the independence, you want to be in and around your community — and quite frankly, that’s good, because that’s a much cheaper place to be.” — Matt Salo, CEO, Salo Health Strategies

A staff member of a former chairman of the Senate Finance Committee — the committee with direct jurisdiction over Medicaid — once asked: “Is Medicaid the one for old people, or the other one?”

“When something is hard to understand, it’s hard to appreciate. It becomes easy to dismiss. It becomes easy to ‘other’-ize, and therefore easy to make significant, devastating changes to it without really understanding.” — Matt Salo

Read the full report from the National Association of Counties.

Medicaid paid for two-thirds of all home care spending in the United States in 2023. It is the primary source of coverage for the 5.1 million Americans who rely on home and community based services to eat, bathe, manage medications, and stay in their own homes. Medicare generally does not cover this care. There is no backup plan.

All 50 responding states currently pay family caregivers under some circumstances. All allow caregivers to be selected, trained, and dismissed by the people they serve. These are not fraudulent arrangements — they are the deliberate, structured foundation of home care in America.

KFF focus groups found that family caregivers often reported struggling to make ends meet and having to reduce their work hours due to caregiving demands. Medicaid payments are not a bonus. For millions of families, they are the difference between staying afloat and financial collapse.

Nearly one in three home care workers are immigrants. The Trump Administration’s intensified immigration enforcement is already shrinking an already strained workforce. “For family caregivers, many may need to continue to provide care without payments.” Six words. No drama needed.

Over 8 million family caregivers — 13% of the 63 million U.S. family caregivers — rely on Medicaid for their own health insurance. When asked what percentage of waiver participants receive paid care from relatives, more than two-thirds of states could not provide data. They want to eliminate a program they cannot even measure.

Read the full KFF analysis.