The chants that stayed with me on May 28 was not “Save ICS.”
It was:
“Disabled Lives Matter.”
“We Are Human Too.”
Those words should never have to be chanted outside the office of a governor in one of the wealthiest states in the nation. Yet there we were, wondering how many more times we would have to explain that our lives are worthy of investment.
As people with physical disabilities gathered outside Gov. Kathy Hochul’s Manhattan office for the second Save ICS protest, many were fighting back tears. Some feared losing the only healthcare organization in New York State specifically designed to understand the realities of living with a significant physical disability.
After nearly two months of negotiations, budget extenders, political maneuvering, and public declarations of victory, New York finally approved a $268 billion budget. Governor Hochul celebrated accomplishments in housing, childcare, insurance reform, utility relief, and other priorities. Those issues matter.
But so does disability.
And once again, people with physical disabilities found themselves asking a familiar question:
How is it possible for New York to spend months negotiating one of the largest state budgets in the nation while failing to preserve the only Health Home specifically dedicated to people with physical disabilities?
That question echoed through every testimony, every tear, and every chant outside the Governor’s office. To us, Independence Care System is not simply another healthcare organization, it represents something increasingly rare in healthcare: disability competence.
Disability competence is not a marketing term. It is the difference between understanding that a wheelchair repair delayed by weeks can become a medical crisis. It is understanding that a disruption in home care can place someone’s health and independence at immediate risk. It is having experience in closing these gaps quickly when they happen and having a model of care that includes preventative interventions to stop them from happening in the first place. ICS recognizes that transportation barriers, inaccessible healthcare facilities, and fragmented systems are not inconveniences; they are determinants of health.
For people with physical disabilities, remaining healthy, safe at home, and thriving in community depends upon systems that understand these realities.
For twenty-six years, ICS has provided disability-competent care coordination, advocacy, wheelchair services, wellness supports, and community-based resources that have helped thousands of New Yorkers with physical disabilities remain healthy, safe at home, and thriving in community.
Now it is scheduled to close at the end of July.
And with it, two programs that many people rely upon for survival and quality of life are also expected to disappear:
On A Roll, a nationally recognized wheelchair seating and mobility program.
Thrive, a social adult day program that combats isolation and strengthens community connection.
What many policymakers fail to understand is that disability-specific services are not luxuries – they are infrastructure.
When a bridge collapses, we recognize the consequences immediately. When disability infrastructure collapses, the damage is often hidden behind closed apartment doors, emergency room visits, preventable hospitalizations, delayed wheelchair repairs, interrupted home care services, and increasing isolation.
The possible closure of ICS is not an isolated event. It is the latest chapter in a much larger story: service cuts, cost savings over common sense investments in preventative care, and policy makers deciding that providing specialized services is too complicated and therefore, not worth it.
For years, people with physical disabilities have warned policymakers about the fragility of the systems we rely upon. We have watched repeated disruptions in long-term care. We have witnessed the erosion of specialized supports. We have experienced wheelchair repair delays that leave people trapped in their homes. We have navigated inaccessible healthcare systems that continue to misunderstand disability-related needs.
Again and again, our community has explained that disability competence matters.
Again and again, we have been told to wait.
Meanwhile, research continues to demonstrate what people with disabilities already know through lived experience: people with mobility disabilities experience significantly worse health outcomes and higher mortality risks than the general population.
We are not debating convenience. We are debating survival.
The disability community has spent years calling for a specialized statewide program for people with physical disabilities. We have not come to Albany empty-handed. We have brought solutions, expertise, data and our lived experience. Only for our narratives to be treated as anecdotes rather than evidence.
The contradiction became even more apparent during this year’s budget process.
State leaders recognized the need to provide significant resources to stabilize managed long-term care plans serving high-acuity populations, including support directed toward organizations such as VNS Health. Six years ago, when ICS’s MLTC was closed by DOH, VNS Health was touted as the cost-effective solution to the problem. Both organizations ended up needing financial support because the state refuses to recognize our needs and invest in our lives.
The New York State Legislature was able stabilize parts of the long-term care system while failing to preserve the only Health Home specifically designed around the needs of people with physical disabilities.
Why is disability competence is treated as optional while disability itself remains unavoidable?
Governor Hochul, the closure of ICS does not mean the needs of people with physical disabilities disappear. New York is choosing to remove one of the few systems specifically designed to meet those needs. The cost is profound, people will die, and that cost to our collective conscience should not be endured.
There is still time take action and save ICS. We call on you to take action today.
Politicians and policymakers may bring an end to ICS; their actions will not end disability. And so, our fight continues.
Marcus D. Johnson, CRC-CVE, LMHC, is a disability rights activist, certified rehabilitation counselor, and mental health practitioner with more than two decades of experience. He serves as Manager of Advocacy Programs and Initiatives at Independence Care System and co-leads the Civics League for Disability Rights, where he works to advance disability-competent healthcare policy and systemic reform for people with physical disabilities.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.