Medicaid Family Caregivers Are Not Fraudsters. Here's What North Dakotans Need to Know.

By Kirsten Dvorak, Executive Director, The Arc of North Dakota

April 2026 | Disability Advocacy, Medicaid Policy

If you don't have a family member with a disability, you might have scrolled past last week's headlines about Medicaid and family caregivers. This story can feel like someone else's problem — until it isn't.

Here's what we know at The Arc of North Dakota after 68 years of walking alongside families across this state: the programs under attack right now are the same ones that could matter to any one of us. A car accident, a stroke, a child born with unexpected needs, a parent aging into care. Disability doesn't discriminate, and neither should our policy conversations.

So let's talk about what actually happened — and why it matters to every North Dakotan.

What Secretary Kennedy Said

U.S. Health and Human Services Secretary Robert F. Kennedy Jr. and CMS Administrator Mehmet Oz recently raised fraud concerns about Medicaid waiver programs that allow family members to be paid to provide care for people with disabilities and aging individuals.

Kennedy suggested these programs pay families for tasks they "used to do for free" — things like driving to doctor's appointments or picking up groceries — and called them "rife with fraud."

The backlash was immediate. And deserved.

What Family Caregiving Actually Looks Like

The picture Secretary Kennedy painted does not match the reality we see every day in North Dakota.

We testified before the North Dakota Legislature in 2025 in support of Senate Bill 2305, the Family Paid Caregiver Service Pilot Project. The evidence we brought to that hearing tells a very different story.

According to the 2023 FINDS (Family and Individual Needs for Disability Supports) Community Report:

• 41% of family caregivers have quit their jobs to provide care for a loved one with a disability — not by choice, but because the care demands are that intensive and unrelenting.

• Family caregivers frequently dedicate more than 40 hours per week to providing care.

• Prolonged caregiving without support leads to serious health consequences: stress, anxiety, high blood pressure, and chronic fatigue.

• Many individuals with disabilities in our state remain on waiting lists for in-home support, respite care, and specialized therapies — leaving families to fill those gaps with no backup.

This work is far more complex than running errands. For many North Dakota families, it means managing medications and medical equipment and providing continuous supervision for a loved one who cannot live safely without support.

That is not a task that "used to be done for free." That is skilled, specialized, full-time care work — and it deserves to be recognized as such.

Why This Matters Even If You Don't Have a Family Member With a Disability

This is the part we really want you to sit with.

According to the CDC, one in four American adults lives with a disability. And almost all of us, if we live long enough, will eventually need some level of support to remain safely in our homes and communities.

The Medicaid home and community-based services (HCBS) programs being targeted right now exist to make that possible — to allow people to stay home, close to family, rather than moving into nursing facilities or institutions.

Home-based care is not just the more humane option. It's the most cost-effective one. Research consistently shows that institutional care costs two to three times as much as supporting someone at home. When we invest in family caregivers, we keep people in stable, familiar environments and reduce the financial burden on the state.

When we undermine these programs, we don't save money. We shift costs onto more expensive institutional settings, hospital systems, and families who are already stretched to their limits.

What The Arc of the United States Said — And What We're Adding

The Arc of the United States issued a clear statement in response, with CEO Katy Neas noting that these comments "reflect a troubling pattern of mischaracterizing Medicaid and the essential role of home and community-based services." She emphasized that people with disabilities want to live in their communities on their own terms, and that broad, unsupported fraud claims put adults and children with disabilities at risk of losing the help they need to live in the community.

The statement also noted: "Like the majority of Americans, many family members need to work to make ends meet, but they're also contending with a serious shortage of direct care workers. For many families, a family member is often a preferred caregiver. They are the only reliable option."

We stand with that statement fully. Here in North Dakota, we've seen firsthand what it means for a family to finally access a Medicaid waiver — the relief, the stability, the ability for a parent to keep working while also keeping their child safe at home. Labeling that "fraud" isn't just factually wrong. It discourages families from accessing programs they're legally entitled to — and it creates political cover for cuts that will harm real people in real North Dakota communities.

The Bigger Picture: Cuts Are Coming

This isn't happening in isolation. These comments come as lawmakers in several states are already considering scaling back home- and community-based services in anticipation of proposed federal legislation that would cut Medicaid spending by nearly $1 trillion.

Language shapes policy. When federal officials call these programs fraud-ridden, it signals to lawmakers that cuts are justified. And when cuts come, North Dakota families — already navigating workforce shortages and waiting lists — will feel them first and hardest.

As The Arc of the United States put it: "We urge federal leaders to distinguish clearly between documented fraud and lawful services, and to work in partnership with the disability community to strengthen, not weaken, Medicaid and HCBS." That's exactly what we're calling for here in North Dakota.

Frequently Asked Questions

What are Medicaid home and community-based services (HCBS)?

HCBS are Medicaid-funded programs that allow people with disabilities and aging individuals to receive care in their homes and communities rather than in nursing facilities or institutions. In North Dakota, these services include in-home support, respite care, specialized therapies, and family caregiver compensation through waiver programs.

Can family members legally be paid to provide Medicaid-funded care in North Dakota?

Yes. Medicaid waiver programs allow states to compensate family members who serve as primary caregivers for loved ones with disabilities. These programs have oversight requirements and are designed to keep people out of more costly institutional settings.

Why is The Arc of North Dakota concerned about proposed Medicaid cuts?

Proposed federal legislation could cut Medicaid spending by nearly $1 trillion nationally. For North Dakota families already facing waitlists for disability services and a shortage of direct support professionals, further cuts would reduce access to care, push more people toward costly institutional settings, and leave family caregivers without support.

What is The Arc of North Dakota doing about this?

We testified before the North Dakota Legislature in 2025 in support of expanding family caregiver support through Senate Bill 2305. We are actively engaged at the state and federal levels on Medicaid policy, and we keep our community informed so North Dakotans can make their voices heard when it matters.

Stay in the Fight With Us

The Arc of North Dakota has been advocating for people with intellectual and developmental disabilities — and for their families — since 1958. We've testified in Bismarck. We're watching what's happening in Washington. And we believe a community's character is measured by how it treats its most vulnerable members.

You don't have to have a family member with a disability to care about this. You just have to care about the kind of North Dakota we want to live in — one where people have the support they need to live with dignity, close to the people who love them, in the communities they call home.

Want to stay informed and take action when it counts? Sign up for our advocacy email list. This is exactly the kind of fight where it helps to have people paying attention.