New York must uphold the promises of the Olmsted decision for the developmentally disabled

Joey, Andy, Sam, Emma and Natasha are the best of friends. They take art and music classes together. A few times a week, they go swimming. They love taking neighborhood walks, preparing and eating dinner together, and share the occasional karaoke evening. But if the five young adults want to share housing, they will have to forego any of the government benefits to which they are entitled as individuals with autism and other developmental disabilities.

If the five were veterans, or senior citizens, or formerly homeless, their desire to live together would pose no conflict with their entitlement benefits. But a host of bureaucratic misinterpretations and the push to create more inclusive environments for people with intellectual and developmental challenges are undermining a landmark U.S. Supreme Court decision that endorsed the power of individuals with mental health challenges and developmental disabilities to make choices about where they live and receive services.

The Olmstead Decision, now celebrating its 25th anniversary, meant to usher in a new era of opportunities, allowing those deemed ready by medical professionals to transition into more inclusive environments. However, the journey from Supreme Court decision to effective implementation has been fraught with challenges, particularly in New York State.

New York’s Office for People with Developmental Disabilities, OPWDD, has issued a self-congratulatory letter celebrating the 25th anniversary. That self-congratulation is misplaced, or at the very least pre-mature. The spirit of Olmstead emphasizes individual choice, yet the reality in New York often veers away from this ideal. Imagine being told you can no longer enjoy your morning coffee at your quiet kitchen table because it isn’t inclusive enough. Instead, you must now go every morning to a bustling coffee shop on the corner. This analogy captures the essence of the current situation — where the focus has shifted from enabling choice to forcing inclusivity without regard for individual preference.

New York State’s approach to compliance with Olmstead is marred by a misinterpretation of the ruling’s intent. Rather than facilitating choice, policies often mandate relocation to more inclusive settings without considering personal preference. The result is a system where individual choice is overshadowed by rigid adherence to misunderstood regulations. Self-direction, a program designed to empower individuals with developmental disabilities to make their own choices, is being stifled by numerous unofficial rules and bureaucratic hurdles. This has made it increasingly difficult for individuals to navigate and utilize the program effectively. It means that folks like Joey, Emma, Andy, Sam, and Natasha are denied the rights they were promised about where they live and with whom.

Moreover, the state continues to impose arbitrary restrictions on group living arrangements, disregarding the preferences of those who choose to live with others. This top-down approach, characterized by counting heads and enforcing capricious rules, undermines the very essence of individual choice that Olmstead sought to protect.

There are glimmers of hope. New York’s chief disability officer, Kim Hill, is a dynamic leader who actively encourages community and advocate participation in the ongoing process of crafting the next Olmstead report. Her efforts are commendable and represent a step in the right direction. Unfortuately, the broader state apparatus continues to regress. Each month brings new policies that further erode individual choice, a trend that must be addressed in the forthcoming Olmstead report in 2025.

One of the most concerning developments is the push for Managed Care for people with developmental disabilities. This shift would transfer decision-making power from individuals to Managed Care Organizations, or MCOs, whose primary focus is often cost reduction. Managed Care strips individuals of their autonomy over long-term supports and services, directly contravening the principles established by Olmstead.

When OPWDD released an email celebrating the Olmstead anniversary, it toted that it is “working side by side with advocates.” The many parent advocacy groups certainly do not feel as if they are included in any meaningful discussions. Perhaps they meant that they are working side-by-side with those large organizations who advocate for Managed Care?

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The Olmstead decision was a promise — a commitment to uphold the rights and choices of individuals with disabilities. As we mark its 25th anniversary, it is crucial to hold New York state accountable for honoring this commitment. Gov. Kathy Hochul must move beyond self-congratulatory declarations and instead instruct OPWDD to immediately address the real issues: Truly reflect the spirit of Olmstead with policies that by prioritize individual choice, and dismantle the barriers that prevent its realization. Only then can we fulfill the promise of a more inclusive and equitable society for all.

Self-direction remains the key to implementing the Olmstead vision. If New York State would stop blocking and start actively supporting these initiatives, we wouldn’t be facing such delays and inefficiencies. Empowering leaders like Hill with the authority and resources needed to drive change is essential. We must move beyond mere box-checking exercises and genuinely commit to the principles of choice and inclusion. This anniversary should be a call to action — a reminder of the work still needed to truly honor the Olmstead decision and the people it was meant to support.

Heather M. Burroughs is the director of Advocacy at AutismUp, a statewide Lead for NYADD (one of the largest family led advocacy groups in New York), and co-hosts a disability empowerment advocacy podcast.