Dismantling Disability Rights: How the HHS Reorganization Threatens Generations of Progress
The proposed restructuring of HHS threatens to erase decades of hard-won disability rights, civil protections, and community-led programs under the guise of reform.
By the Center for Racial and Disability Justice
The United States Department of Health and Human Services (HHS) is undergoing a radical and far-reaching reorganization — one that is poised to deliver a devastating blow to the nation’s disability community. Behind a veil of bureaucratic restructuring lies a sweeping rollback of civil rights enforcement, equity infrastructure, and community-based support systems built over decades of advocacy, struggle, and federal partnership.
While policy analysts and advocates sift through the details of this leaked reorganization plan, one truth is already clear: This is not reform. It is demolition.
A Systematic Erasure of Disability Infrastructure
At the heart of the plan is the complete elimination of the Administration for Community Living (ACL) — the only federal agency explicitly dedicated to supporting community living and civil rights for disabled and older Americans. Its dissolution signals the dismantling of the entire ecosystem of federally supported disability programs.
Among the programs slated for elimination:
- National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), a key engine for disability-led, cross-disability, and applied research, is being abolished without any plan to transition its mission or infrastructure.
- University Centers for Excellence in Developmental Disabilities (UCEDDs) and State Developmental Disabilities (DD) Councils — critical for training, systems change, and research — are being eliminated.
- Protection and Advocacy (P&A) organizations, the last line of defense for disability civil rights enforcement at the state level, will be defunded.
- Projects of National Significance, which have seeded countless innovations in services and leadership development, will be lost.
Even Centers for Independent Living (CILs) — a remaining pillar of the independent living movement — may see drastic funding cuts, gutting peer-led supports that empower disabled people to live in their communities.
Research & Rights Replaced by Biomedical Control
In a striking move, the plan proposes to consolidate the NICHD and NIDCD into a new “National Institute for Disability Research” under NIH. Yet it deliberately excludes NIDILRR, thereby eliminating the only federal research agency centered on disability as a social, political, and rights-based experience. The result is a research framework centered entirely on a medical model of disability — one that has historically viewed disability as pathology rather than a matter of rights, access, and social justice.
This exclusion is not just symbolic. It marginalizes decades of participatory, user-centered research and silences the voices of disabled scholars, advocates, and communities. It is the biomedicalization of disability justice, cloaked in scientific legitimacy.
Civil Rights Enforcement: Hollowed Out
Perhaps most alarming is the plan to eliminate the HHS Office for Civil Rights (OCR) — the federal body tasked with enforcing Section 504 of the Rehabilitation Act and disability protections under the Americans with Disabilities Act (ADA). OCR has long been the disability community’s mechanism to challenge discrimination in healthcare, social services, and public health systems. Its eradication severs the disability community from one of its most essential federal protections.
In OCR’s place, the plan proposes to “decentralize” civil rights enforcement — meaning that individual program offices would be tasked with policing themselves. This is a recipe for unchecked discrimination, conflict of interest, and the erosion of legal accountability.
The Looming Threat to Disabled Students: IDEA Under Attack
In a separate but intertwined proposal, the Department of Education has suggested transferring oversight of disability programs — including the Individuals with Disabilities Education Act (IDEA) — to HHS. Under normal circumstances, such a move would be concerning. But under this HHS reorganization, it would be catastrophic.
What would this mean?
- IDEA would be absorbed into a system that no longer enforces civil rights, as OCR is eliminated.
- The legal promise of a Free and Appropriate Public Education (FAPE) would be reframed through a medical lens, not as a guaranteed right.
- Due process protections and procedural safeguards — already difficult for families to navigate — would likely be buried or eliminated, especially with the parallel plan to dissolve the Office of Medicare Hearings and Appeals.
- With the erasure of P&As, DD Councils, and UCEDDs, families would be left with no legal support, no community oversight, and no systemic accountability.
- IDEA funding could be restructured into block grants, allowing states to defund inclusive education with little consequence.
This would not just be administrative restructuring. It would amount to the de facto dismantling of IDEA — a civil rights victory transformed into a shadow of its former self.
A Blueprint for Exclusion & Injustice
The assault doesn’t stop with disability-specific programs. This is a wholesale deconstruction of federal investments in health equity, community empowerment, and justice across the lifespan. The reorganization also includes:
- Mental health crisis programs, criminal justice and behavioral health grants
- HIV/AIDS programs, Healthy Start, Head Start, and homelessness prevention
- Tribal health, minority health grants, and the National Institute on Minority Health and Health Disparities
- Elder justice programs, adult protective services, and Aging and Disability Resource Centers
- Voting access for people with disabilities
- Patient-centered outcomes research and Medicare appeals and more…
While each of these eliminations is catastrophic in its own right, their cumulative effect is clear: multiply marginalized disabled people — especially those who are Black, Indigenous, People of Color (BIPOC), LGBTQ+, low-income, and/or immigrants — will face a future with fewer protections, fewer services, and fewer avenues for redress.
All policy is disability policy.
This is a coordinated disinvestment in civil rights, prevention, equity, and evidence-based policy — and a direct attack on the most vulnerable communities in the United States.
This Is Not Bureaucratic Streamlining. This Is Erasure.
The HHS reorganization is framed as a modernization effort. In truth, it is a regressive consolidation of power, resources, and control into a medicalized and rights-averse bureaucracy. By eliminating community-driven programs, civil rights enforcement mechanisms, and participatory research frameworks, the federal government is abandoning its responsibility to disabled people. By centralizing services within Medicaid and NIH, the federal government is moving to redefine disability as pathology, erase civil rights enforcement, and transfer responsibility for justice back to the states — many of which have long histories of exclusion and segregation.
We must resist this quiet dismantling. Disability rights are civil rights… and social rights and political rights and human rights. And the infrastructure built to protect those rights must be defended — fiercely and urgently.
What You Can Do?
- Contact your members of Congress and demand they oppose any effort to eliminate disability civil rights enforcement, community-based services, and research programs. Urge them to reject the dismantling of federal disability and civil rights infrastructure.
- Organize. Join and support disability justice organizations that are fighting these cuts.
- Educate your community about what is at stake — not just for disabled people, but for all of us who believe in equity, justice, and the right to live with dignity.
This is more than a policy fight. It is a fight for the soul of our society — and the future of disability justice in America.
The Northwestern Pritzker Law Center for Racial and Disability Justice (CRDJ) is a first-of-its-kind center dedicated to promoting justice for people of color, people with disabilities, and individuals at the intersection of race and disability.
Learn more about CRDJ by visiting the Center for Racial and Disability Justice webpage.
