NACDD Public Policy Director
For decades, the disability advocacy movement operated under a foundational belief that federal law, bolstered by federal courts and federal executive oversight, served as a permanent, ironclad shield protecting disabled individuals from unnecessary institutionalization. The Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the landmark U.S. Supreme Court decision in Olmstead v. L.C. were viewed not merely as statutory milestones, but as an enduring promise.
However, recent shifts across all three branches of the federal government have delivered a stark wake-up call. Congress, through H.R. 1/P.L. 119-21, enacted major Medicaid changes that CBO estimates will reduce Medicaid enrollment by 12.9 million and increase the uninsured by 7.5 million by 2034; the Executive Branch, through a June 2026 DOJ Office of Legal Counsel opinion, rejected the federal government’s longstanding interpretation that the ADA and Section 504 impose an integration mandate on states; and the Judicial Branch, through the September 2026 Texas v. Kennedy settlement and resulting judgment, vacated HHS’s 2024 regulatory provisions addressing community integration nationwide, without changing the underlying ADA, Section 504, or Olmstead statutes and precedent. Together, these developments demonstrate the value of state statutes, state-court litigation, Medicaid policy, MFP, and state administrative action as avenues for preserving and advancing community integration when federal policy and enforcement can change.
Simply put, we relied too heavily, for far too long, on the good graces of our federal democracy and federal courts. While all three branches of government remain legally charged with enforcing the federal ADA and Section 504, real-world events demonstrate how dramatically the balance can shift in the federal system. Executive reinterpretations, sudden changes in legal opinions, and shifting judicial philosophies create a precarious foundation for securing basic human civil rights to live independently and freely in the community.
That is why State Councils on Developmental Disabilities (DD Councils) and state-level advocates are leading a crucial pivot. While continuing to pressure federal intervention, advocates are aggressively reexamining, strengthening, and constructing state legal pathways. State DD Councils are filling the gaps where protections do not exist and fortifying existing state mechanisms to ensure that no individual with an intellectual or developmental disability (I/DD) is forced into an institution against their will.
NACDD has identified at least five state structural tactics advocates have successfully deployed to hold state agencies, service providers, and administrative entities accountable directly to the people who demand that community living be enforced.
- Explicit State Statutes & Legislative Mandates: Relying solely on federal regulations leaves state programs vulnerable to shifting political winds. To counteract this, DD Councils and legislative allies are pushing to embed explicit community integration principles directly into state statutory codes.
States like California have utilized statutory mandates such as the Lanterman Developmental Disabilities Services Act, establishing explicit rights to community-based care that exist independently of federal statutory language. Other states passed laws to mandate statewide master plans to direct state health agencies to maintain statewide plans specifically engineered to prevent institutionalization and maximize home and community-based services (HCBS).
By embedding integration mandates into primary state statutes, advocates ensure that the right to live in one’s community remains enforceable in state courts regardless of shifts at the federal level.
- Establishing Binding Executive Orders & Inter-Agency Governance: Creating sustainable community pathways requires seamless coordination across housing, healthcare, transportation, and labor. To break down administrative silos, state executive branches are utilizing formal Executive Orders to institute high-level oversight.
In Minnesota, executive mandates created a dedicated Governor’s Olmstead Subcabinet and an independent implementation office tasked with tracking measurable outcome metrics across housing, employment, and waitlists. Other states have executive rules to bind separate state entities to unified community integration coordination between agencies, ensuring that failure in one department (such as housing) does not default a person into an institution.
- Enshrining Constitutional Anti-Segregation Protections: Constitutional provisions represent the absolute highest level of state legal protection. By grounding community integration in state constitutional law, advocates build defenses that are immune to regulatory rollback.
Connecticut stands out as a statutory leader whose state constitution explicitly bans segregation or discrimination based on physical or mental disability. Other states have strong equal protection safeguards that explicitly guarantee disability equal protection within their state constitutions, granting advocates a foundational argument against forced institutional placement.
- Securing Independent State Causes of Action (The Private Right to Sue): A right without a remedy is merely a suggestion. One of the most potent mechanisms being leveraged by state advocates is the ability to file direct civil lawsuits in state courts under state law that is completely independent of federal jurisdiction.
California’s Unruh Civil Rights Act and Bane Act automatically incorporate civil rights violations into state law, allowing individuals to sue state entities in state court for private monetary damages and injunctive relief. Capitol People First v. Department of Developmental Services demonstrates an effective state-court strategy for advancing community integration by challenging systemic barriers to community living under California’s Lanterman Act and federal disability law. The California Court of Appeal allowed the class action to proceed, creating leverage for systemic, not merely individual, relief. The resulting 2009 settlement required state improvements in community-living choices, supports, and placement processes, demonstrating how class litigation can pressure a state toward broader, system-level resolution. Other states’ frameworks offer direct state judicial remedies when agencies fail to provide services in integrated settings.
These state-level legal pathways ensure that self-advocates and families can directly challenge state failure, enforce compliance, and secure needed community placements without ever stepping foot into a federal court.
- Building Dedicated Administrative Oversight & Deinstitutionalization Infrastructure: Lasting defense requires permanent institutional accountability. DD Councils are working to construct administrative infrastructure designed solely to transition individuals out of institutions and monitor community quality.
In jurisdictions like the District of Columbia, Minnesota, and West Virginia, there are dedicated, standalone administrative bodies charged specifically with monitoring state compliance and resolving integration barriers. Additionally, through persistent state advocacy, 19 states and territories have completely closed their state-operated institutions for individuals with IDD, rebalancing Medicaid budgets to ensure long-term care dollars follow the individual into the community.
Additionally, Money Follows the Person (MFP), an optional federal/state grant program, is currently implemented in 36 states and the District of Columbia, with 45 states having participated since the program’s inception. MFP gives states federal resources to transition Medicaid beneficiaries from institutions to community settings and develop systems that support community living.
Where these pathways exist, DD Councils are training self-advocates and legal allies to leverage them. Where these pathways do not exist, DD Councils are doing the heavy lifting by funding policy research, drafting model legislation, facilitating cross-agency workgroups, and empowering self-advocates to demand state-level action.
The right to live in the community and to choose where you sleep, where you work, who you spend time with, and how you live your life, is a fundamental civil right. We can no longer afford to leave that right anchored solely to federal political stability. By building, fortifying, and enforcing state-level legal protections, state DD Councils and advocates are creating an unshakeable system of accountability that holds state agencies and providers directly answerable to disabled people and their families.
Stay tuned for more information to come on how state DD Councils are leading the way to real defense for community living across the nation.
