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Gov. Kathy Hochul recently said that New York understands “what is at stake” when it comes to protecting community living for people with disabilities. If that is true, then New York must confront an uncomfortable question: How can the state claim to prioritize community living while allowing the very infrastructure that makes community living possible to disappear?
The governor’s remarks came in response to a recent opinion from the U.S. Department of Justice on Olmstead protections. In 1999’s Olmstead v. L.C., the Supreme Court affirmed that people with disabilities have a right to live in the community and cannot be unjustifiably committed to institutions. But the federal government has recently stepped back from enforcing those protections. If there was ever a time for New York to prove its commitment — to prove it not with speeches but with policy choices — it is now.
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People with disabilities have been raising the alarm for years about systemic failures in disability care. We testified. We attended hearings. We met with legislators. We met with the Department of Health. We shared our lived experiences. We offered solutions.
Yet the systems we depend on continue to weaken.
For 26 years, the Independence Care System operated New York City’s only “health home” dedicated specifically to adults with physical disabilities. It provided disability-competent coordinated care because remaining healthy in the community requires far more than seeing a doctor. It requires home care, accessible healthcare, reliable transportation, durable medical equipment, behavioral health support and professionals who understand how those pieces fit together.
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Following the state’s decision not to provide additional financial support, ICS has announced it will close, leaving approximately 1,300 members to transition elsewhere.
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Its closure also means the loss of On A Roll, a nationally recognized wheelchair seating and mobility clinic, and Thrive, a program that has helped reduce the isolation experienced by many people with physical disabilities. Together, they represent decades of disability-specific expertise that New York has not replaced.
Unfortunately, this pattern extends well beyond one organization. People with disabilities continue to navigate the fallout from the Consumer Directed Personal Assistance Program transition. Wheelchair repairs routinely take months. Disability-competent providers remain difficult to find. Accessible healthcare continues to depend more on chance than policy.
Meanwhile, policymakers celebrate employment initiatives and accessible recreation.
Those investments matter. But they come after the fundamentals. You cannot work if you cannot get out of bed. You cannot participate in your community if your wheelchair cannot be repaired. You cannot thrive if you cannot access healthcare designed around the realities of disability.
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People with disabilities know these failures are connected. Every month, members of the Civics League for Disability Rights tell remarkably similar stories regardless of where they live in New York. They struggle to secure home care, replace essential equipment, reach medical appointments or find providers who understand disability.
Those stories are often dismissed because they are qualitative. They should not be. We are the data. Our lived experiences reveal what spreadsheets cannot. They show how policies actually perform once they reach the people they are intended to serve.
New York cannot continue calling this a funding problem when the larger issue is system design. A system designed without disability competence and without meaningful partnerships with people with disabilities will continue producing inequitable outcomes.
If New York truly understands what is at stake, then it must stop allowing the infrastructure that keeps people with disabilities healthy, independent and living in their communities to disappear.
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Because when those supports disappear, community living becomes a promise without a pathway. Limiting choices limits existence.
Marcus D. Johnson is the manager of advocacy programs and initiatives at Independence Care System and co-leader of the Civics League for Disability Rights.