An Open Letter to North Dakota's Congressional Delegation: Don't Let Our Neighbors With Disabilities Fall Through the Cracks

To Senator Hoeven, Senator Cramer, and Representative Fedorchak:

North Dakota takes care of its own. That's not a slogan — it's how our state works. Neighbors check on neighbors. Communities show up. It's part of what makes living here different from living almost anywhere else.

That spirit is being tested right now, and we're writing to ask you to help us protect it.

North Dakota has been here before, and we shouldn't have to go back. In 1980, The Arc of North Dakota sued the State of North Dakota in federal court over the conditions our neighbors with intellectual and developmental disabilities were living in at the Grafton State School and San Haven State Hospital. That case ran for sixteen years. It is the reason North Dakota moved away from warehousing people with disabilities in institutions and toward the community-based system of care we have today — case advocacy, community placement, the right to live among one's own neighbors instead of behind an institution's walls. It took a generation of work, a federal court order, and the persistence of families who refused to accept that this was just how things were. We are not willing to watch that progress erode because of decisions made a thousand miles away in Washington.

But that is exactly the direction several recent federal actions are pulling us.

Over the past year, Congress has passed the largest reduction in federal Medicaid funding in the program's history, with hundreds of billions of dollars in cuts phasing in between now and 2034. At the same time, new eligibility checks and work-reporting requirements are adding layers of paperwork that risk knocking eligible people off their coverage simply because a form arrived late or a verification system glitched. And federal regulators have begun treating the growth of home and community-based services — the very services that let people with disabilities live in their own homes instead of institutions — as a red flag for fraud, rather than what it actually is: decades of bipartisan progress finally reaching the people who need it.

Two more recent developments make this moment feel especially urgent. Just this week, the Department of Justice's Office of Legal Counsel released an opinion reinterpreting Olmstead v. L.C. This 1999 Supreme Court decision guarantees people with disabilities the right to receive services in their own communities rather than in institutions. The new opinion argues that states were never actually required to provide community-based care in the first place. It doesn't change the law, and it isn't a binding precedent. But disability rights attorneys who've spent careers enforcing Olmstead are calling it a warning shot aimed at the legal foundation that has kept thousands of North Dakotans out of institutions and in their own homes.

At the same time, the federal government is moving special education programs — including oversight of the Individuals with Disabilities Education Act — from the Department of Education to the Department of Health and Human Services. We understand the argument that disability services and health services overlap. But IDEA exists to guarantee children a free, appropriate public education, not to manage a medical condition. Moving that responsibility into a health agency risks treating a child's right to learn alongside their peers as a diagnosis to be handled rather than an educational entitlement to be protected — and it places that protection in the hands of an agency with far less experience working with schools, teachers, and IEP teams than the one built to do exactly that.

For North Dakota, none of this is an abstract policy debate. It's about whether a young man with Down syndrome in Bismarck can keep the job coach who helped him land his first paycheck. It's about whether a mother in rural Stutsman County can keep the in-home aide who lets her daughter sleep in her own bed rather than in a facility two hours away. It's about whether the direct support professionals who do this hard, essential work can be paid enough to stay in it. Nearly nine in ten disability service providers nationally are already reporting staffing shortages. North Dakota providers are not immune.

We want to be clear about something: this letter isn't about partisan politics, and it isn't an attack on any one person or party. We know you've each spoken, at different times, about the importance of supporting North Dakotans with disabilities and the families who care for them. We're writing because the math is becoming harder to square with that commitment. When federal Medicaid dollars shrink, states are left facing an impossible choice — raise revenue, cut other priorities, or cut services that are optional under federal law, such as the home- and community-based supports that keep people out of institutions. Optional is rarely where states want to cut, but it's often where they're forced to.

So here is what we're asking of you, specifically:

Defend the Olmstead community-integration mandate. Whatever DOJ's internal legal opinions say, we ask you to be clear publicly that you support people with disabilities' right to live in their own communities, and to oppose any effort — legislative or administrative — to weaken that protection.

Keep special education oversight where the expertise actually lives. We'd ask you to support keeping IDEA administration at the Department of Education, or at a minimum, to insist on clear guarantees that the move to HHS won't slow down evaluations, weaken IEP enforcement, or reframe a child's right to an education as a health condition to be managed.

Protect home and community-based services from further cuts. These programs are not a waste — they are the cost-effective, dignified alternative to institutional care, and they are already underfunded relative to need.

Push back against eligibility "verification" systems that create barriers rather than catch fraud. If a new rule is going to cause people who legitimately qualify for Medicaid to lose coverage over a missed form, it isn't fraud prevention. It's a coverage cut with extra paperwork.

Talk to North Dakota's direct support workforce and the families who rely on it before the next budget decision, not after. We would welcome the chance to arrange that conversation directly.

We know each of you faces competing demands on a finite budget, and we don't expect this letter to resolve that tension. But North Dakota has always prided itself on not waiting for Washington to tell us how to take care of each other. We're asking you to make sure Washington's decisions don't make that harder than it has to be.

We're ready to be a resource as you weigh these decisions — to share data, introduce you to the people affected, and work through the trade-offs together. Our door, and our families' doors, are open.

It took North Dakota sixteen years in federal court to build the system we have now. We are asking you to make sure it doesn't take federal action in Washington to tear it back down.