Picture of medical equipment on a white table including a mask, syringes and a stethoscope

NIH v. APHA Explained: Cancelled NIH Grants Harder to Restore

/in /by Jackie Dilworth

In August 2025, the U.S. Supreme Court made it harder for health researchers to restore NIH grants that were canceled under the Trump administration’s new funding directives. In National Institutes of Health v. American Public Health Association, the Court said challenges to the government’s broader guidance can likely still move forward in federal district court, but claims at getting terminated grant funding back belong in the Court of Federal Claims instead. That means many researchers may have to fight on two fronts just to challenge one set of decisions, creating a slower and more complicated path for restoring research that can improve and save lives.

What is NIH v. APHA and Why Does it Matter?

This case is about whether researchers can go to go court when the federal government suddenly changes course and cancels already-awarded health research grants.

That may sound technical, but the stakes are high. In early 2025, the NIH issued internal guidance saying it would no longer fund research tied to topics the administration opposed, including diversity, equity, and inclusion (DEI) objectives, gender identity, and COVID-19. The NIH then terminated almost 2,000 grants that had already been funded for research related to those topics. The Supreme Court’s ruling affects how researchers can challenge those actions and how difficult it will be to get funding restored when grants are cut off.

What Happened in NIH v. APHA?

Researchers and organizations including the American Public Health Association sued in federal district court in Massachusetts after the NIH abruptly canceled grants and issued guidance directing institutes to stop funding certain research. The plaintiffs argued that the guidance and the grant terminations were unlawful.

The District Court judge sided with the plaintiffs, finding the agency’s actions unlawful and “arbitrary and capricious.” The defendants then appealed that ruling to the U.S. Court of Appeals for the First Circuit and asked the court to stop (or “stay”) the District Court’s order while the appeal moved forward. The First Circuit refused, finding the defendants hadn’t shown it was likely to win an appeal. The federal government then went to the Supreme Court on its emergency docket and asked the justices to block the lower court’s order. Because this came through the emergency process, there was no oral argument before the Court acted.

What Did the Supreme Court Decide in NIH v. APHA?

The Supreme Court granted the federal government’s request in part and denied it in part. The justices allowed the legal challenge to the NIH’s guidance to continue, but they said the District Court didn’t have jurisdiction to order relief tied to the terminated grants themselves. In practical terms, that means researchers who want the grants reinstated have to pursue that part of the fight in the Court of Federal Claims rather than in District Court.

That split matters because the two courts offer different kinds of relief. District Courts can decide whether agency action was unlawful and can issue remedies like blocking unlawful guidance. The Court of Federal Claims, by contrast, is built for money claims against the government. Justice Ketanji Brown Jackson warned that this creates what she called a “bizarre claim-splitting regime” that could leave plaintiffs without effective relief at all. Justice Jackson puts a fine point on the consequences of this decision:

“For the Government, the incremental expenditure of money is at stake. For plaintiffs and the public, scientific progress itself hangs in the balance—along with the lives that progress saves. Make no mistake: Per the evidence in front of the District Court, the forward march of scientific discovery will not only be halted—it will be reversed.”

A later agreement required the NIH to give some stalled applications a new, good-faith review, but it didn’t undo the Supreme Court’s ruling on terminated grants. The larger legal fight over the District Court’s decision also continued after oral argument in the First Circuit in January 2026.

Why The Arc Supports Federal Funding for Health Research

The Arc’s position statement on research is clear: applied and basic research related to intellectual and/or developmental disabilities must be adequately funded, designed around topics that matter to people with disabilities and their families, and conducted in ways that improve people’s lives. Research helps promote independence, improve quality of life, strengthen services and supports, and identify better educational, social, and clinical interventions. When the government abruptly cuts off that funding, it doesn’t just disrupt grants. It disrupts knowledge, innovation, and progress for people with intellectual and developmental disabilities.

Why NIH v. APHA Matters for People With Disabilities

This case matters because disability research is part of the larger web of health research that was disrupted. The terminated grants included studies on reproductive decision-making among women with developmental disabilities that affect cognition and a psychosocial intervention for autistic adults who are sexual and gender minorities, along with research related to kidney disease, diabetes, Alzheimer’s disease and dementia, and HIV.

When research funding stops, research often stops with it. And when the path to restoring that funding becomes slower and more fragmented, fewer researchers may have the time or resources to challenge unlawful terminations. That means less research, less innovation, and less understanding of the health needs of people with disabilities in the future.

Where Can I Learn More About NIH v. APHA?

NIH v. APHA FAQ: Research Funding, Federal Courts, and Disability Research

What is NIH v. APHA about?

It’s about where researchers can go to court when the NIH cancels already-awarded grants and changes its funding rules.

What did the Supreme Court decide in NIH v. APHA?

The Court said the challenge to the NIH’s guidance can continue in District Court, but claims seeking restoration of terminated grant funding likely belong in the Court of Federal Claims.

Why does NIH v. APHA matter for people with disabilities?

Because disability research is part of the health research affected by these funding cuts, and making grants harder to restore can slow or stop research that people with disabilities depend on.

Written by: Shira Wakschlag, Senior Executive Officer of Legal Advocacy and General Counsel at The Arc of the United States

Picture of a hospital or nursing home hallway with white walls and white floors

Brown v. DC: Why This Community Integration Case Matters for People With Disabilities

/in /by Jackie Dilworth

More than 25 years after the Supreme Court’s landmark decision in Olmstead v. L.C., people with disabilities are still fighting for the right to live in the community instead of being unnecessarily stuck in institutions. In Brown v. DC, that fight is playing out in the nation’s capital. In late 2024, a federal district court ruled that Washington, DC, was failing people with physical disabilities living in nursing facilities by not giving them enough information about community options, not providing effective transition help, and not maintaining an effective Olmstead plan.

DC has now appealed, and The Arc recently filed an amicus brief urging the DC Circuit to uphold that ruling.

What is Brown v. DC and why does it matter?

This case is about whether DC is violating the Americans with Disabilities Act (ADA) integration mandate by unnecessarily keeping people with physical disabilities in nursing facilities instead of helping them move into community-based living.

That matters because the Supreme Court made clear in Olmstead that unjustified segregation of people with disabilities is discrimination. Federal disability law requires public systems to provide services in the most integrated setting appropriate to a person’s needs. In plain terms: if a person with a disability can live in the community with the right supports, the government cannot simply leave them in an institution because that’s easier or more familiar.

How did Brown v. DC reach this appeal?

This lawsuit began in 2010 when advocates sued DC for failing to help nursing facility residents with physical disabilities transition into the community. In 2014, the district court certified a class of people with physical disabilities receiving long-term care in nursing facilities who were eligible for community-based services, wanted to live in the community, and needed help from DC to get there. The case first went to trial in 2017, and the district court ruled in favor of DC Plaintiffs appealed, and in 2019 the DC Circuit reversed the decision, ruling that the district court had used the wrong legal standard and sending the case back for another trial.

After that retrial, the district court ruled for the plaintiffs in December 2024. The court found that DC had failed to inform nursing facility residents about community-based options, failed to help them access the services and housing they needed to leave, and failed to maintain an effective Olmstead plan. DC appealed again, and that’s the case now before the DC Circuit.

What did the District Court find in Brown v. DC?

The district court’s 2024 ruling was a major win because it focused on concrete barriers that keep people trapped in nursing facilities.

The court found that DC wasn’t doing enough to tell residents they had options outside an institution. It also found that DC wasn’t providing effective transition assistance and was relying too heavily on nursing facilities themselves instead of taking responsibility as the government entity running the system. And it found that DC didn’t have an effective, working Olmstead plan for helping people move into the community

What is The Arc arguing in Brown v. DC?

The Arc and its co-amici argue that the district court got it right. The brief says DC is violating its integration obligations and that the remedy ordered by the district court is both appropriate and necessary. That includes requiring DC to provide meaningful information to people in nursing facilities, strengthen transition services, and build enough community-based long-term care and housing capacity so people can actually leave institutions.

The issue isn’t just whether people technically qualify for community living. It’s whether the system gives them a real path to get there.

Why The Arc supports strong community integration obligations

Although this case focuses on people with physical disabilities, the stakes are broader. When DC fails to maintain an effective Olmstead plan, that failure affects all people with disabilities who are unnecessarily segregated in institutions. A stronger system for helping people leave nursing facilities and move into the community would benefit many disabled people across the District, including people with intellectual and developmental disabilities.

The Arc strongly supports community-based services that allow people with IDD to live and thrive outside institutional settings. Our position statements on Long-Term Supports and Services and Human and Civil Rights make that clear: people with disabilities have a right to the supports they need to live in the community, those services must be delivered in the most integrated setting, and reliance on institutions cannot be a substitute for successful community living.

Why community integration matters for people with intellectual and developmental disabilities

This case matters because the right to live in the community is bigger than any one disability group. When DC fails to help people leave nursing facilities, it strengthens a system that keeps disabled people segregated instead of supported.

That’s why this case matters for people with intellectual and developmental disabilities, too. For decades, The Arc has fought for community living, not institutionalization. A strong ruling here would reinforce a simple but important principle: governments must do more than say community living is possible. They must provide the housing, services, and transition support that make it real.

Where can I learn more about Brown v. DC?

You can learn more on The Arc’s Brown v. DC resource page and from broader federal guidance on Olmstead and community integration.

Brown v. DC FAQs: Olmstead, Nursing Facilities, and Community Living

What is Brown v. DC about?

It is about whether DC is unlawfully keeping people with physical disabilities in nursing facilities instead of helping them move into the community.

What’s an Olmstead plan?

It’s a state or local government’s working plan for helping people with disabilities move from institutions into more integrated community settings, as required by federal disability law.

Why does this case matter beyond people with physical disabilities?

Because if DC isn’t meeting its community integration obligations, that can affect other people with disabilities too, including people with IDD who need services and supports to live in the community.

A picture of prison bars up close with a brick floor

Hamm v. Smith Explained: Can IQ Scores Alone Determine Intellectual Disability in Death Penalty Cases?

/in /by Jackie Dilworth

In Hamm v. Smith, the U.S. Supreme Court dismissed a closely watched death penalty case about how courts should evaluate intellectual disability. The case asked whether courts can consider multiple IQ test scores as part of a full clinical assessment when deciding whether a person is intellectually disabled and therefore protected from execution under the Eighth Amendment. In a 5-4 decision issued on May 21, 2026, the Court dismissed the case as “improvidently granted,” meaning the justices decided they shouldn’t have agreed to hear it in the first place. As a result, the Court didn’t answer the underlying question, leaving uncertainty about how courts should use multiple IQ scores in future death penalty cases involving intellectual disability.

Bottom line: The Supreme Court didn’t decide whether courts can rely on multiple IQ scores when determining intellectual disability in death penalty cases.

What is Hamm v. Smith about?

Before the Supreme Court dismissed the case, Hamm v. Smith asked an important question about how courts determine whether a person has intellectual disability in death penalty cases.

That question matters because the Supreme Court has already ruled that executing a person with an intellectual disability is unconstitutional. In Hamm v. Smith, the issue wasn’t whether that protection exists. It was how courts should apply it. More specifically, the case asked whether courts can consider multiple IQ test scores as part of a full clinical evaluation, or whether they should give too much weight to the numbers alone.

The Court agreed to review “whether and how courts may consider the cumulative effect of multiple IQ scores in assessing an Atkins claim.”

Can a state execute a person with an intellectual disability?

No. In Atkins v. Virginia, the Supreme Court ruled that the Eighth Amendment’s ban on cruel and unusual punishment prohibits the execution of people with intellectual disability. Later decisions reinforced that courts cannot use an overly rigid or outdated approach when deciding whether someone has an intellectual disability. In Hall v. Florida in 2014, the Court rejected a strict cutoff based only on IQ test scores. In Moore v. Texas in 2017, the Court ruled that courts must use clinical standards, not stereotypes or non-clinical assumptions.

Those rulings are consistent with how intellectual disability is actually diagnosed by experts. It’s not determined by an IQ test alone. Clinicians look at the whole picture, including intellectual functioning, adaptive functioning, and whether the disability began during the developmental period. IQ tests can be part of that picture, but they aren’t the whole picture.

A person may take multiple IQ tests throughout their life. Those scores can be helpful, but they don’t replace clinical judgment. Different tests can produce somewhat different results, and an outlier score doesn’t automatically tell the full story. Courts should look at all the relevant evidence, including how a person functions in daily life.

How did Hamm v. Smith reach the Supreme Court?

Joseph Smith was convicted of murder in Alabama in 1997, before the Supreme Court’s decision in Atkins v. Virginia. After Atkins, Mr. Smith sought post-conviction relief, arguing that he has intellectual disability and cannot be executed.

In 2022, the U.S. Court of Appeals for the Eleventh Circuit ruled in his favor. The court considered Mr. Smith’s history of adaptive deficits dating back to grade school, where he was evaluated for special education services. It also considered five IQ tests, four of which had scores in the low-to-mid 70s. The court concluded that the evidence, viewed together, supported a finding of intellectual disability.

Alabama appealed to the Supreme Court. In November 2024, the Supreme Court sent the case back down to the Eleventh Circuit and asked it to clarify how it used Mr. Smith’s multiple IQ scores. The Eleventh Circuit said it had looked holistically at his scores, not by relying on the lowest score alone. Alabama appealed again, and in June 2025, the Supreme Court agreed to hear the case on a limited question about whether and how courts may consider multiple IQ test scores in an Atkins claim.

What did the Supreme Court decide in Hamm v. Smith?

In a 5-4 vote, the Supreme Court dismissed Hamm v. Smith instead of deciding the question it had agreed to review. The Court’s full order was one sentence: it dismissed the case as “improvidently granted,” meaning the justices concluded they shouldn’t have taken it in the first place. As a result, the lower court’s ruling stands, and Joseph Smith remains protected from execution under the Eighth Amendment.

Justice Sotomayor, joined by Justice Jackson, wrote separately to explain why dismissal was appropriate. She said the case wasn’t the right vehicle for resolving how courts should evaluate multiple IQ scores in death penalty cases. In her view, the parties agreed on an important point: courts can consider multiple IQ scores when determining whether a person has an intellectual disability. She also explained that the lower courts hadn’t actually decided the broader legal rule Alabama wanted the Supreme Court to announce. Because of that, she concluded the Court couldn’t properly answer that question here.

Justice Sotomayor also underscored a key point The Arc raised in its amicus brief: intellectual disability cannot be reduced to IQ scores alone. Citing disability and clinical experts, she wrote that “IQ test scores cannot stand alone” and must be considered alongside other evidence, including adaptive functioning and the person’s day-to-day intellectual functioning.

Justice Thomas dissented, arguing that Atkins v. Virginia was wrongly decided.

Justice Alito, joined by Chief Justice Roberts, Justice Gorsuch, and Justice Thomas, also dissented, arguing that the Court should have decided this case and given lower courts more guidance on how to use multiple IQ tests going forward.

What is The Arc’s view on intellectual disability and the death penalty?

The Arc’s position is clear: no person with intellectual disability should be executed, and states must use fair, accurate procedures that follow accepted clinical standards when deciding whether a person has an intellectual disability. Here’s more from our position statement on the criminal justice system:

When death penalty is an issue, individuals with intellectual disability… must: Continue to be exempt from the death penalty because existing case-by-case determinations of competence to stand trial, criminal responsibility, and mitigating factors at sentencing have proved insufficient to protect the rights of individuals with intellectual disability; Have access to expert witnesses and professionals who are knowledgeable about, as well as trained and experienced in, intellectual disability and who can accurately determine the presence and effects of intellectual disability; and [h]ave their intellectual disability determined by state procedures that are accurate… state procedures must be consistent with the national standards on making an intellectual disability determination and ensure that people with intellectual disability are not executed.

Since Atkins v. Virginia, The Arc has filed amicus briefs in every U.S. Supreme Court case involving the death penalty and intellectual disability, including Hamm v. Smith. In this case, The Arc argued that IQ tests have a built-in margin of error and cannot replace clinical judgment. Multiple IQ scores can make the analysis more complicated, especially when one score appears to be an outlier.

That’s why courts must look beyond numbers alone and consider the full clinical record, including adaptive functioning and other evidence of intellectual disability.

Why Hamm v. Smith matters for people with disabilities

This case matters because it’s about whether courts will follow science and accepted clinical standards when deciding who is protected from execution.

Intellectual disability is a lifelong condition. It cannot be reduced to a single IQ score. Experts have made clear that diagnosis requires a full evaluation, including intellectual functioning, adaptive functioning, and other evidence over time.

People with intellectual disability are at greater risk of being targeted, pressured, wrongfully convicted, and failed by the criminal legal system. Without fair, accurate, science-based standards, lives are at risk.

This case isn’t about excusing violent crime. People with intellectual disability can still be held accountable under the law. But the Constitution draws a clear line: people with intellectual disability cannot be executed.

Although the Supreme Court dismissed Hamm v. Smith without answering the question it agreed to review, existing constitutional protections remain in place.

Where can I learn more about Hamm v. Smith?

The Arc’s Hamm v. Smith Case Page

Hamm v. Smith FAQ: Intellectual Disability, IQ Scores, and the Death Penalty

Can a person with an intellectual disability be executed?

No. The Supreme Court ruled in Atkins v. Virginia that the Constitution prohibits executing people with intellectual disability.

What is Hamm v. Smith about?

The case asked whether courts can solely consider multiple IQ scores when deciding whether a person has an intellectual disability in a death penalty case.

What did the Supreme Court decide in Hamm v. Smith?

In a 5-4 decision on May 21, 2026, the Court dismissed the case as “improvidently granted,” meaning the justices decided they should not have taken it in the first place.

Why did the Supreme Court dismiss Hamm v. Smith?

A majority of the justices concluded this wasn’t the right case to resolve a broader rule about how courts should weigh multiple IQ scores. Justice Sotomayor wrote that the question Alabama wanted answered had not been properly decided in the lower courts.

Did the Supreme Court’s dismissal of Hamm v. Smith change the rule that people with intellectual disability cannot be executed?

No. The Supreme Court did not overturn Atkins v. Virginia. The constitutional rule remains the same: people with intellectual disability cannot be executed.

Why are IQ scores not enough by themselves?

Because intellectual disability is diagnosed using a full clinical assessment, not one number alone. Courts and clinicians must also consider adaptive functioning and other evidence.

Written by: Evan Monod, Staff Attorney for The Arc of the United States

A man with disabilities wearing sunglasses, a navy Rushcreek Fire Department T-shirt, jeans, and sneakers stands in front of a bright yellow fire truck. The truck door is open and has text that reads, “Rushcreek Twp. Vol. Fire Dept.

The Cost of Medicaid Cuts: What Kaycee and Keith Stand to Lose

/in , /by The Arc

Every person deserves the chance to live, learn, and be part of their community. For many people with disabilities, Medicaid home and community-based services (HCBS) make that possible. These services help people stay healthy and connected to their communities, with the support they need. Without HCBS, many families would face fear, isolation, and impossible choices.

A smiling woman with disabilities wearing glasses, a tiara, and a pink sash stands in front of a sparkly pink backdrop. She is holding a crown-shaped trophy, flowers, and a bouquet. A decorative banner behind her includes the words “IN OUR AMAZING.”Melanie from West Virginia knows this better than most. Her daughter, Kaycee, is 22 years old and full of hope for her future. But getting to this point was not easy. Melanie remembers the years before HCBS, when every day felt like a crisis. As she explains, “Before Kaycee had access to Medicaid and the IDD Waiver, our family was in constant crisis. She needed step-by-step support for daily life… We were doing everything we could, but it was not enough.”

Everything changed when Kaycee finally got the support she needed. With HCBS, she gained access to therapies, medical care, and community services that helped her grow. She found her voice. She learned new skills. She began to take part in her community in ways that once felt impossible.

But Melanie knows how fragile that progress is. “If home and community-based services are cut, my daughter will not just lose support, she will lose her ability to safely live the life she has worked so hard to build.”

Kaycee still needs daily help to stay safe, communicate, and manage her medical needs. Without HCBS, she could lose the independence she fought so hard for. She could face medical emergencies, isolation, or even institutionalization.

A smiling man with disabilities wearing glasses, a black shirt, and a black baseball cap with a yellow sun design takes a selfie indoors. Fluorescent ceiling lights and a window with vertical blinds are visible behind him.In Ohio, Keith also depends on HCBS to live the life he chooses. He is proud of the ways he gives back to his community. He is an Eagle Scout, a volunteer football coach, a church sound tech, and a member of his local fire department’s auxiliary team. He also has complex medical needs that require daily support.

Keith shares, “I depend on HCBS services to manage my complex needs that are not always visible to others. I was born with complex heart and pulmonary complications. These services have allowed me to remain active in my community and church.”

He worries deeply about what cuts would mean for his future. “I am deeply concerned that any end to these programs would jeopardize my ability to contribute to society and live independently,” he says. “I urge you to protect these essential services for myself and others with disabilities.”

These stories show what HCBS makes possible. But right now, these services are at risk. Congress has already made major cuts to Medicaid, and more cuts may come. That means longer waiting lists, fewer supports, and more families in crisis.

People with disabilities and their families deserve better.

Now is the time to act. Contact your members of Congress and tell them to protect Medicaid home and community-based services. Lives, futures, and communities depend on it.

 

Katy Neas, CEO of The Arc of the United States, sitting in a white chair with a black binder on her lap smiling at the camera

A New Q&A Series Helps Journalists Cover Disability With More Accuracy and Respect

/in /by Jackie Dilworth

People with intellectual and developmental disabilities, or IDD, are part of every community. They are students, workers, voters, family members, advocates, neighbors, and people directly affected by the systems journalists cover every day.

But too often, people with IDD are left out of stories about disability, Medicaid, education, healthcare, housing, transportation, employment, criminal justice, and community life. When they’re included, coverage can still rely on outdated language, inaccessible interviews, narrow sourcing, or images that don’t reflect the full reality of people’s lives.

That’s why The Arc partnered with the National Press Club Journalism Institute on a three-part Q&A series to help journalists cover disability with more accuracy, accessibility, and respect.

The series features practical guidance from Katy Neas, CEO of The Arc of the United States, on interviewing people with IDD, avoiding harmful framing, and choosing visuals that represent people with disabilities as diverse participants in everyday life.

Disability Reporting Guidance for Journalists

The Q&A series focuses on three common gaps in disability coverage: who gets interviewed, how stories are framed, and what visuals are used.

Together, the series gives reporters, editors, producers, and photo editors practical ways to make disability coverage more accurate, accessible, and rooted in the lives of people with disabilities.

How & Why to Interview People With Intellectual and Developmental Disabilities

This Q&A focuses on how journalists can make interviews more accessible and respectful for people with IDD. It includes guidance on asking what would make the interview work best, sharing questions in advance when helpful, using plain language, giving people time to process, and making sure people with IDD stay at the center of their own stories.

It also explains why people with IDD can be important sources on the policies, systems, barriers, and supports that shape daily life.

How to Choose Better Visuals for Disability Stories

This Q&A focuses on the visuals newsrooms use when covering disability. Too often, disability stories rely on the same narrow visuals, like isolated wheelchair images, hospital scenes, or photos that frame people with disabilities through pity or dependency.

The guidance offers practical standards for reporters, photo editors, and producers, including how to choose visuals that show people with disabilities in all their diversity and in real settings: at school, at work, with family, in the community, using technology, advocating, and participating in everyday life.

How to Avoid Outdated and Harmful Disability Language

This Q&A focuses on language and framing. The words journalists choose shape how audiences understand disability. The guidance explains how to avoid stereotypes, respect how people describe themselves, and cover disability as part of public policy, civil rights, and community life.

It also reminds newsrooms that disability coverage shouldn’t default to pity, tragedy, or treating someone as inspiring simply for existing.

Why Accurate Disability Reporting Matters for People With IDD

Coverage shapes public understanding. It influences how people think about disability, what policymakers pay attention to, and whether people with IDD are included in stories about the issues that affect their lives.

Better reporting starts with better sourcing, better questions, better language, and better visuals.

People with IDD should be included early in the reporting process, and not just in stories focused on disability issues. They should be asked what would make an interview work best. They should be given the same respect, preparation, and clarity any source deserves. And they shouldn’t be expected to represent an entire community.

The Arc Is a Resource for Journalists Covering IDD

Through our national office and chapter network, The Arc can provide background on intellectual and developmental disabilities, connect reporters with experts, and help identify people and families who may want to share their experiences when appropriate. For media inquiries and more resources, visit The Arc’s Press Center.

Read the Full National Press Club Journalism Institute Q&A Series:

Picture of the U.S. Department of Education building in Washington, DC

HELP Committee Report Finds OCR Reached a 12-Year Low in Enforceable Relief for Students Facing Discrimination

/in /by Jackie Dilworth

Staff for the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) released a new report yesterday documenting a steep decline in enforceable civil rights outcomes at the U.S. Department of Education’s Office for Civil Rights (OCR), including in cases involving students with disabilities.

The report finds that OCR reached 112 resolution agreements in 2025, down from 507 in 2024, a steep drop in one of the main ways OCR can require schools to fix civil rights violations. That’s about 1% of the 11,985 civil rights cases the report says were pending. For disability discrimination cases, the report lists 5,794 pending cases and only 83 resolution agreements in 2025, down from 390 in 2024.

That drop comes after major disruption to OCR’s capacity. In March 2025, nearly half of OCR staff were affected by a reduction in force, a change that reduced the number of investigators available to respond to students and schools and contributed to instability in how complaints were handled.

Bottom line: resolution agreements are one of the main ways OCR can require a school to fix a civil rights violation. Without a resolution agreement, families often don’t get a schoolwide fix, and the same barriers can continue for the family who filed and the students who come after them.

Key takeaways from the report on disability cases

The report shows that some of the most serious disability-related categories had little to no enforceable relief in 2025, including:

  • Restraint and/or seclusion: 172 pending cases, 0 resolution agreements
  • Disability harassment: 595 pending cases, 1 resolution agreement
  • FAPE (free appropriate public education): 1,887 pending cases, 40 resolution agreements

The report also describes civil rights enforcement at a 12-year low and notes that multiple regional civil rights offices have been closed, shrinking the federal capacity families and schools rely on.

Why OCR capacity is the difference between rights and reality

“This report shows federal civil rights enforcement in education, an essential tool provided by Congress to help fight disability discrimination, is being denied to students with disabilities,” said Katy Neas, CEO of The Arc of the United States. “OCR is where families turn when a student is denied accommodations or accessibility, pushed out of learning time, or harassed or disciplined unfairly because of disability. When OCR isn’t delivering solutions schools must follow, students lose learning time, families lose a workable path to resolve what’s happening, and schools are left with uncertainty and weaker oversight. Students with disabilities pay the price now, and it shapes what comes next, from graduation to employment and independence.”

What this means for families of students with disabilities

Families often turn to OCR after they have documented the problem and tried to resolve it through the school and district with no meaningful change. When OCR enforcement is inconsistent, urgent issues can drag on while a student keeps losing access to learning and support.

Families turn to OCR for urgent situations like:

  • A student being denied accommodations or accessibility
  • Repeated removals from class instead of support
  • Disability-based harassment not being addressed
  • Discriminatory discipline that keeps a child out of learning time
  • Restraint and seclusion issues that demand immediate accountability

OCR is one of the few avenues families can pursue without having to hire a lawyer or spend years in court.

What this means for schools and educators

Schools rely on OCR enforcement and guidance. When enforcement is inconsistent or guidance isn’t available, confusion grows and problems linger.

  • Schools lose clear, reliable direction about what compliance looks like.
  • Disputes last longer and are more likely to escalate into conflict, due process, or litigation.
  • Inconsistent enforcement leads to uneven practices across districts.

Why The Arc is weighing in

The Arc exists because families had to fight for the basic right of children with disabilities to be educated. Our advocacy helped lay the groundwork for the Individuals with Disabilities Education Act (IDEA), and for decades we’ve worked to protect and strengthen it so students can learn alongside nondisabled students with the support they need.

Today, our policy team regularly meets with members of Congress and education officials to protect IDEA and Section 504, and to push for the staffing and oversight that make those rights real in schools.

The Arc is also a plaintiff in Somerville Public Schools et al. v. Trump et al., a federal lawsuit challenging efforts to dismantle the U.S. Department of Education, because weakening federal capacity threatens special education oversight and civil rights enforcement that students with disabilities rely on.

Next steps to restore civil rights enforcement in education

The report points to a simple reality: students’ rights depend on a civil rights office that can do its job consistently and transparently. OCR’s work affects students facing discrimination based on disability, race, national origin, and sex, and families need a process that leads to real answers and real fixes.

If OCR is going to protect students and provide meaningful accountability, these steps can’t wait:

  • Fully staff and stabilize OCR so complaints get a real review and timely decisions.
  • Restore transparency by regularly publishing basic information about workload, timelines, and outcomes so families and schools can understand what’s happening.
  • Act quickly when a student is facing ongoing harm or being shut out of education, including cases involving denial of accommodations or accessibility, harassment, discriminatory discipline, and restraint or seclusion.
  • Communicate clearly with families and schools about what to expect after a complaint is filed, including timelines, reasons cases are dismissed, and what steps schools must take when OCR finds a violation.

For reporters: Interview availability

Robyn Linscott, Director of Education and Family Policy at The Arc of the United States, is available for interviews on what the report’s findings mean for students with disabilities and what policymakers are weighing based on input from families and school systems.

Frequently Asked Questions about OCR enforcement and students with disabilities

What is a resolution agreement at the Office for Civil Rights?
A resolution agreement is a formal agreement that requires a school to take specific steps to fix a civil rights problem identified through OCR’s process.

Why do OCR resolution agreements matter for students with disabilities?
They can require changes like providing accommodations, fixing accessibility barriers, changing discipline practices, and addressing harassment so the same harm does not continue.

What types of disability issues do OCR handle in schools?
Common issues include Section 504 accommodations, accessibility barriers, disability harassment, discriminatory discipline, and concerns related to restraint and seclusion.

What should families do if they believe a student’s disability rights are being violated?
Families can document concerns, use school and district complaint processes, and consider filing an OCR complaint when discrimination is alleged.

A black and white picture of people with disabilities protesting to get Section 504 signed

Nine States, A Defining Civil Right: Here’s How Chapters Are Fighting Back

/in /by Jackie Dilworth

Update (July 15, 2026): Advocacy is changing the course of Texas v. Kennedy. Indiana withdrew first after months of advocacy from The Arc of Indiana. Kansas followed, after sustained pressure from disability advocates across the state, including The Arc of Douglas County. Now, Missouri has informed advocates it will withdraw after months of pressure from St. Louis Arc, The Arc of the Ozarks, and more than 45 agencies across the state. South Dakota has also withdrawn. Louisiana and Montana aren’t listed on the latest filing, though they haven’t made formal public announcements.

Only three states remain in the case: Alaska, Florida, and Texas.

Texas v. Kennedy is a lawsuit that targets Section 504 of the Rehabilitation Act of 1973. Section 504 requires that any program or service supported with federal funding be accessible to people with disabilities. This case focuses on the rights of people with disabilities who want to live and get government-financed services in the community instead of being limited to receiving these services in a nursing home or other institutions.

This case has real stakes for millions of people with disabilities. It could weaken protections people rely on to stay in the community with the services they need.

Across these states, The Arc’s chapters are doing what they have always done best. They’re organizing, showing up, and refusing to let this happen quietly.

Texas: Making the stakes impossible to ignore

The Arc of Texas has pushed this fight into public view. They sent a letter to Texas Attorney General Ken Paxton asking Texas to withdraw, and issued a press release and an action alert urging calls and emails. They also produced a short video to drive public awareness and action.

It’s breaking through. Their work has generated coverage in NPR’s KERA News and the Fort Worth Star-Telegram. Even more importantly, the Attorney General’s office received a significant surge of calls and emails from The Arc’s advocates, so much so that the phone line was intermittently disconnected. They’re asking advocates to keep going and not be silenced! They’re also working in partnership with Texas Advocates to elevate the perspectives of people with disabilities through new videos on why community living matters.

Indiana: A win powered by advocacy

Indiana is no longer part of this lawsuit, and that didn’t happen by accident.

The Arc of Indiana spent months pushing Indiana to back out, including direct conversations with Indiana Attorney General Todd Rokita and his team about what this case could mean for people with disabilities who rely on community-based services and civil rights protections.

On May 4, 2026, The Arc of Indiana announced that Attorney General Rokita has decided to withdraw Indiana from Texas v. Kennedy. This is exactly what strong grassroots advocacy can do: move a state from being part of the problem to protecting rights.

Kansas: Another state withdraws after disability advocates push back

On June 10, 2026, Kansas withdrew from Texas v. Kennedy, another major sign that public pressure can change the course of this lawsuit. The Arc of Douglas County joined more than 20 Kansas disability organizations in urging Attorney General Kris Kobach to withdraw the state from the case. In a coalition letter, advocates made clear that Kansas’ participation threatened people with disabilities and community-based services. Kansas’ withdrawal shows what happens when disability advocates stay organized and keep the pressure on.

Louisiana: Coalition pressure and continued accountability

The Arc of Louisiana helped build early pressure in the state by convening a coalition, creating a fact sheet, and sharing it widely with legislators, advocacy partners, and the public. They also pressed Louisiana Attorney General Liz Murrill’s office directly, including following up after Louisiana rejoined the lawsuit.

Louisiana hasn’t made a formal public announcement, but the state is no longer listed on the latest filing in Texas v. Kennedy. That reflects the growing pressure from disability advocates who have made clear that attacking Section 504 and the integration mandate puts people with disabilities at risk.

Missouri: Chapters helped turn pressure into action

Missouri is the latest state to move away from Texas v. Kennedy, after months of advocacy from disability organizations across the state.

St. Louis Arc helped drive public pressure through direct outreach and an action campaign urging Missouri to withdraw. The Arc of the Ozarks was also deeply involved, pushing for answers, raising concerns with state leaders and partners, and working through legislative relationships to keep the issue moving. On July 14, 2026, more than 45 agencies, including chapters of The Arc, signed a letter urging Missouri Attorney General Catherine Hanaway to withdraw. That same day the letter was delivered, advocates were informed Missouri would drop out of the case.

This is what organized advocacy can do. Chapters, providers, families, and disability advocates kept the pressure on until the state changed course.

Alaska and Florida: Building the groundwork

The Arc of Anchorage is working with Alaska’s disability community to coordinate a stronger response. They partnered with the Developmental Disabilities Association, the Disability Law Center of Alaska, and other stakeholders for a planning session, and they’ve reached out to Alaska Attorney General Stephen Cox while continuing follow-up to secure a meeting.

The Arc of Florida is pushing for answers at stage agencies.

What you can do right now

If you live in one of the three states still pushing this lawsuit, your call matters.

Call your state Attorney General and say: “Withdraw [STATE] from Texas v. Kennedy. People with disabilities should be able to live in the community with the supports that make life possible, and [STATE] should not be part of a lawsuit that puts that at risk.”

Then take one more step:

  • Ask two people in your state to call too.
  • Share this blog and tag your Attorney General’s office.

This is how change happens. Public pressure creates consequences, and it changes decisions. Help us protect rights that should never be treated as negotiable.

Picture of a rally in front of the U.S. Capitol with someone holding a "Protect Medicaid" sign

The Arc Responds to Kennedy’s Medicaid and HCBS Comments

/in /by Jackie Dilworth

Statement from Katy Neas on RFK Jr.’s Medicaid and HCBS Comments:

“Recent comments from HHS Secretary Robert F. Kennedy Jr. at a House Committee hearing, and similar statements from CMS Administrator Mehmet Oz, reflect a troubling pattern of mischaracterizing Medicaid and the essential role of home and community-based services (HCBS). People with disabilities want to live in their communities with the support they need, on their own terms. We can all agree that protecting the integrity of the programs that provide these supports is important. But making broad and unsupported claims that HCBS, particularly services delivered by family caregivers, are ‘rife with fraud’ puts adults and children with disabilities, and their families, at risk of losing the help they need to live in the community.

After decades of institutionalization, people with disabilities and their families fought for the home and community-based services necessary for their independence, dignity, and inclusion. Some people with disabilities prefer that help to come from family members. Some rely on direct care workers who help people get up in the morning, get dressed, take medications, and participate in community life. Both provide essential support. 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 not just often a preferred caregiver. They are the only reliable option.

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.”

A picture of Alex LaMorie, a white man with sunglasses, headphones around his neck, and a blue polo shirt, standing in front of an Autism Society table

Joint Statement on Crisis Response, Disability, and Community Safety Following the Death of Alex LaMorie

/in /by Jackie Dilworth

The Autism Society, The Arc, and the undersigned organizations are deeply saddened by the tragic death of Alex LaMorie, who was fatally shot during a police response to a behavioral health crisis in Columbia, Maryland. Our heartfelt condolences go out to his family, loved ones, and all those affected, including first responders.

This tragedy demands a full and transparent investigation. It also underscores the ongoing and complex risks that can arise at the intersection of disability, mental health, and law enforcement response. While crisis intervention training is one tool officers use, training alone cannot fully prevent tragic outcomes, particularly in rapidly evolving situations involving distress, fear, or vulnerability. A more comprehensive and coordinated approach is needed to ensure safety for everyone involved.

We are especially concerned about the broader context highlighted in this case, including the growing prevalence of online scams and exploitation. Individuals with autism and other disabilities are disproportionately targeted and face elevated risks of victimization and involvement with the criminal justice system, often due to communication differences, social vulnerability, or unmet support needs.

Research indicates that a majority of autistic adults report experiencing some form of victimization, including bullying, exploitation, or abuse (Brown-Lavoie et al., 2014), and studies have documented increased likelihood of police contact and misunderstanding during crises (Weiss & Fardella, 2018). These realities can escalate into acute emotional or behavioral crises, reinforcing the urgent need for accessible supports, preventive education, and responsive crisis systems.

Alex’s death underscores the need for stronger collaboration between government agencies, law enforcement, and the disability community to improve crisis response procedures and training. The Autism Society and The Arc remain committed to working alongside policymakers, law enforcement, and community partners to develop solutions that prioritize safety, dignity, and understanding, including expanded use of 988, increased availability of mobile crisis teams, and greater investment in non-law and non-lethal enforcement responses whenever possible. Ensuring that trained mental health professionals are available, and that systems are coordinated, transparent, and accountable, is critical to preventing future tragedies.

We reaffirm our commitment to safe and inclusive community living. Individuals with autism have the right to choose where and how they live, with access to a range of housing, services, and supports that promote independence, interdependence, and full community integration. Inclusive living relies on agencies like the police and 911 being aware and able to respond to the disability community when members are in crisis.

Ultimately, advancing safety requires a shared commitment to understanding, acceptance, and proactive support. We must continue working toward systems that recognize the diverse needs of individuals with autism, reduce vulnerability to harm, and ensure that every person can live safely and with dignity in their community.

Signed By:
The Arc of Howard County
The Arc of the United States
Autism Science Foundation
Autism Society of America
Autism Society of Baltimore-Chesapeake
Autism Society of Maryland
Help 4 HD
Hussman Institute for Autism
Maryland Developmental Disabilities Council
National Alliance on Mental Illness of Howard County
National Association for the Dually Diagnosed (NADD)
National Autism Safety Council

List of Resources:

Sexual Violence and Disability: How Health Care Providers Can Respond Better

/in , /by The Arc

People with intellectual and developmental disabilities (IDD) face disproportionately high rates of sexual assault, yet too many health care providers are still not trained to respond well when survivors come forward. The Arc’s Transforming Health care Project is working to change that.

April is Sexual Assault Awareness Month, a time to confront a reality that doesn’t get nearly enough attention: people with IDD are sexually assaulted at seven times the rate of people without disabilities. Health care settings should be places where survivors are met with safety, clarity, and support. Too often, they’re not.

When health care providers aren’t trained to communicate accessibly, recognize abuse, or respond in trauma-informed ways, survivors with disabilities can be dismissed, misunderstood, or left without the support they need. That’s not just a training gap. It’s a health care access gap.

That’s where The Arc’s Transforming Health Care Project comes in. Through The Arc’s National Center on Criminal Justice and Disability, in partnership with the World Institute on Disability (WID) and chapters of The Arc in Massachusetts, Oregon, and Philadelphia, the project is examining how health care training can better prepare providers to respond to sexual violence against people with IDD. The project is also seeking to ensure that people with lived experience are leading training efforts within health care. The goal is straightforward: help build health care systems where people with disabilities are believed, respected, and supported.

Why Health Care Response Matters

Sexual violence is already underreported. For people with disabilities, the barriers can be even higher. Some survivors may not have been taught what sexual violence is. Some may not have the language to describe what happened. Some may fear they won’t be believed. And some may have already experienced a lifetime of being talked over or dismissed in medical settings. When providers are unprepared, those barriers grow.

This isn’t about blaming individual clinicians. Most providers enter health care because they want to help people. But they work in systems shaped by short appointments, productivity demands, and uneven training. In those conditions, signs of abuse can be missed. Disclosure can be mishandled. A survivor may finally speak up and still leave without real support because the system wasn’t built to meet the moment.

For survivors with disabilities, that failure can have lasting consequences. A health care visit may be one of the few places where someone has the chance to disclose abuse, ask for help, or begin to feel safe. When that moment is missed, the harm doesn’t end with the appointment.

What The Arc’s NCCJD Is Doing

The Transforming Health Care Project is focused on changing how providers are trained, so they’re better equipped to respond when patients with disabilities disclose sexual violence. The project is assessing existing health care training programs and developing recommendations grounded in three priorities: cultural humility, sexual violence awareness, and leadership by self-advocates. The project is developing guidelines that will promote cultural humility, people with IDD as co-trainers, and safe, respectful, inclusive health care.

That matters because better care starts with better preparation. Providers need tools that help them communicate clearly, slow down when needed, respond without assumptions, and create conditions where patients with IDD can share sensitive experiences safely. They also need to understand that people with disabilities are the experts in their own lives and should direct their own care.

As Dawn Skaggs, Chief Programs Officer at the World Institute on Disability, shares, “This work centers the leadership and lived expertise of people with disabilities and moves us closer to a health care system that is truly accessible and inclusive.”

Led by People With Disabilities and Survivors

Taylor Woodard, on the far left, poses with three other women at a table during a professional event, smiling at the camera.What sets this project apart isn’t just the subject matter. It’s the leadership model.

People with IDD aren’t being treated as subjects of reform. They’re helping lead it. The Transforming Health Care Project is guided by a 12-member advisory board co-led by two people with disabilities, including a person with IDD who is a sexual assault survivor. The board brings together people with IDD, survivors of sexual abuse, and health care professionals. Advisory board members with IDD are compensated for their time and expertise, reinforcing a simple but too often overlooked truth: lived experience is expertise.

Members do much more than review materials. They are shaping recommendations, challenging assumptions, and helping define what respectful care should actually look like in practice. That means the final guidance will not be built around theory, but around actual lived experience. It will reflect the experiences of people who know firsthand what it means to seek care, disclose abuse, and navigate systems that were not designed with them in mind.

Taylor Woodard sits on a mobility scooter on a city sidewalk, smiling over her shoulder at the camera. She's wearing a denim jacket and blue headphones, with a floral tote bag hanging from the scooter

Taylor Woodard

One of the project’s co-facilitators is Taylor Woodard, Manager of Information & Referral at The Arc of the United States. Taylor, who has a developmental disability, explains the significance of that space: “I truly value being part of a team bringing the health care challenges and concerns of a community that has historically been overlooked by the medical profession to the forefront. I leave each meeting knowing our members feel listened to, some for the first time in their lives.”

For many advisory board members, being heard in a setting where decisions are actively being shaped is new. Taylor emphasizes that leadership must remain central to lasting change: “Disability justice initiatives must be directed by people with disabilities. Centering disabled leadership is the only way we will obtain equality alongside our fellow citizens without disabilities.”

What Change Could Look Like

The long-term goal of this project is better care when it matters most.

When the final guidelines reach the health care community, the hope is that providers will be better prepared to listen, respond appropriately, and respect the autonomy of patients with IDD who disclose sexual violence. That includes communicating clearly, taking disclosures seriously, and recognizing that survivors with disabilities shouldn’t have to fight to be believed or to direct their own care.

Fran Hladysz stands in front of a brick wall with colorful graffiti, leaning casually and smiling slightly at the camera.

Fran Hladysz

Taylor puts it this way: “When medical professionals read the guidelines and realize how much people with disabilities want to direct their health care, I hope they will quickly integrate the advisory board’s recommendations into their practice. I also hope they will listen to and respect people with IDD, or anyone for that matter, who comes forward to report sexual violence.”

Advisory board member Fran Hladysz, a person with IDD and a survivor of sexual abuse, also points to the importance of inclusion across disability experiences: “Just because I have a disability, that doesn’t mean you should treat me differently or less. I like that [the Transforming Health Care Project] involves all different types of disabilities because we need to make sure that we get the best treatment that’s possible for us and the best health care.”

The Transforming Health Care Project advisory board is also being positioned as a public-facing force in health and hospital coalition work, offering a model other organizations can learn from. As Taylor noted, “The Arc has provided a model for elevating leaders with IDD that other organizations can and should replicate.”

Why This Work Cannot Wait

Sexual Assault Awareness Month shines a light on sexual violence each April, but this work can’t begin and end with one month of attention. People with disabilities deserve health care systems that are ready to meet them with dignity all year long. They deserve providers who know how to respond. They deserve to be heard the first time.

The Transforming Health Care Project guidelines are expected to be released in fall 2026. They will reflect the leadership, expertise, and lived experience of the people most directly impacted and lay the groundwork for more responsive health care practices.

Meaningful change in health care will take more than awareness. It will take training, accountability, and a willingness to rethink who gets treated as an expert. This project starts from the right lens: people with disabilities and survivors are not at the margins of the solution. They’re leading it.

Need help now? The Arc’s NCCJD offers resources on talking about sexual violence with people with IDD. Please contact us by filling out this form or email us at NCCJDinfo@TheArc.org. If you or someone you know has experienced sexual assault, RAINN’s National Sexual Assault Hotline is available at 800-656-HOPE (4673) and an online chat is available 24/7.

Frequently Asked Questions

What is The Arc’s Transforming Healthcare Project?
It is a project led by The Arc’s National Center on Criminal Justice and Disability, in partnership with the World Institute on Disability and several Arc chapters, to improve how healthcare providers respond to sexual violence against people with IDD.

Why does this project matter?
People with IDD face disproportionately high rates of sexual assault, but healthcare systems are often not prepared to respond well when survivors disclose abuse.

Who is shaping the recommendations?
Self-advocates, survivors of sexual violence, and healthcare professionals are helping lead the work through a 12-member Advisory Board.

What will the project produce?
The project will produce guidelines to help healthcare professionals respond in safer, more respectful, and more accessible ways.

When will the guidelines be released?
They are expected in fall 2026.