There are moments when a protest becomes more than a demonstration. It becomes a reckoning.
On May 5, more than one hundred people with physical disabilities, advocates, family members, and allies gathered outside Gov. Kathy Hochul’s New York City office to protest the closure of Independence Care System (ICS), the only Health Home in New York State singularly dedicated to people with physical disabilities.
What unfolded that afternoon was not simply anger over the potential loss of a healthcare program. It was a public indictment of a healthcare system that has repeatedly failed to value the lives, expertise, and survival of disabled people.
Wheelchair users filled the sidewalks outside 919 Third Avenue. Access-A-Ride vehicles lined the streets one after another. Protesters held signs reading “ICS Gave Me My Independence,” “Stop Cutting Our Services,” and “We Want to Thrive, Not Survive.”
The chants echoed through Midtown Manhattan:
“Save ICS!”
“Give us the money!”
“On A Roll!”
“We want to thrive, not survive!”
Those chants were not political theater. They were expressions of fear, grief, and exhaustion from a community that has spent decades fighting to remain visible in systems that consistently treat disabled lives as negotiable.
ICS recently submitted a Health Home closure plan after years of attempting to secure sustainable funding for specialized services for people with physical disabilities. The closure extends beyond care management. It threatens On A Roll, ICS’s nationally recognized wheelchair seating and mobility clinic, and Thrive, a social adult day program designed to combat isolation and strengthen community connection.
In an email announcing the closure plan, ICS President and CEO Regina Estela wrote:
“We have done everything within our power to continue serving people with physical disabilities, supporting their ability to remain healthy, mobile, and independent in their homes and communities.”
She continued:
“For the past twenty-six years, we have been the only program in New York State singularly focused on this population. When ICS closes its doors, adults with physical disabilities will lose access to expert disability-competent care management, wheelchair services, and Social Adult Day services that ICS alone has provided and that remain largely unavailable in the broader healthcare delivery system.”
That statement matters because it exposes the truth policymakers have long known: there is no real replacement for ICS which serves members throughout New York City and the Lower Hudson Valley.
For years, ICS leadership, advocates, and members repeatedly warned the New York State Department of Health that the Health Home funding structure was inadequate for people with high-acuity physical disabilities. DOH leadership and the Medicaid Director were aware of the disparities. They were aware that ICS was operating under a fundamentally inequitable reimbursement structure compared to other Health Home programs and healthcare models throughout New York State.
The issue was never hidden.
The community raised concerns about the financial instability of disability-specialized services. ICS advocated for structural reforms, bridge funding, and stabilization mechanisms that acknowledged the realities of serving people requiring 12-hour and 24-hour care, complex wheelchair systems, home modifications, and intensive coordination across fragmented systems.
Yet despite repeated warnings, meaningful corrective action never came.
At the same time, Albany continued negotiating billion-dollar budget agreements and publicly celebrating investments in other priorities. A recent City & State report highlighted that lawmakers were advancing a state budget framework involving billions in aid and new spending priorities even while key details remained unresolved. For many in the disability community, the contrast could not be more painful: New York can mobilize billions when political priorities demand it, yet the state’s only disability-focused Health Home is left fighting for survival.
What New Yorkers with disabilities witnessed was not simply bureaucratic neglect. It was structural abandonment.
At the protest, the emotional weight of that abandonment was impossible to ignore.
As I addressed the crowd to open the rally, I looked out at my community of wheelchair users of approximately 75 gathered shoulder to shoulder, or more accurately, wheelchair to wheelchair. Many had not seen each other in years. What began as a protest quickly transformed into something deeper: a reunion, a grieving space, and a declaration that our community refuses to disappear quietly.
“I have never experienced such a large gathering of my peers coming together to speak truth to power,” I later reflected.
“What stood out most was that beyond the advocacy, it also became a reunion of sorts. Many people had not seen one another for months or even years, and despite the pain and fear surrounding why we were there, there was also connection, solidarity, and community.”
That community connection is precisely what systems often fail to understand about disability justice. Programs as ICS are not simply service providers. They are infrastructures of survival. They are spaces where disabled people are understood without explanation. They are systems intentionally designed around the realities of physical disability rather than forcing disabled people to endlessly adapt to inaccessible institutions.
Throughout the rally, members shared deeply personal testimonies about how ICS helped keep them out of nursing homes and hospitals, helped repair wheelchairs that restored mobility and dignity, and created spaces where isolation could be interrupted by community.
Christy Cruz-Cullins described the emotional power of witnessing the community come together:
More than one hundred people with physical disabilities, advocates, family members, and allies recently rallied outside Gov. Kathy Hochul’s New York City office to protest the closure of Independence Care System (ICS).
“I witnessed my community come together heartbroken and angry, yet full of energy and determination to be heard. People spoke about survival, dignity, and resilience. It reminded me that our community is strong, and that advocacy is more important now than ever.”
Sharifa Abu-Hamda’s story perhaps best illustrates why disability-competent systems matter.
While the protest was taking place, Sharifa was at home urgently fighting to prevent the loss of her Medicaid coverage and 24-hour home care services after discovering her benefits had become inactive. Her experience navigating another managed care organization exposed exactly what disabled advocates have been warning policymakers about for years.
Despite relying on 24-hour split-shift CDPAS services seven days a week, Sharifa described being instructed to manage complex administrative barriers largely on her own. She was told to print and complete paperwork despite significant physical limitations affecting her ability to write. She was instructed to travel in person to HRA headquarters with little regard for the physical and logistical burdens that would create. Coordinated, disability-competent assistance was largely absent.
“This experience underscores exactly why people with physical disabilities are fighting for the survival of ICS,” Sharifa explained.
“Without specialized, coordinated, disability-competent support, people are left to navigate systems that are not designed to respond to our realities.”
Her words expose a truth policymakers continue to minimize: continuity of care is not a luxury for disabled people. It is survival.
And yet the systems making decisions about our lives are too often built around cost containment rather than human dignity.
Disability justice requires us to name what is happening clearly.
People with disabilities are routinely asked to prove our worthiness for support while systems fail to prove their worthiness to serve us.
We are told there is not enough money to sustain specialized disability care while billions continue flowing through healthcare systems that remain inaccessible, fragmented, and unaccountable to the communities most impacted by their failures.
We are expected to survive systems never designed for us and then praised for our resilience when we somehow do.
But resilience should never be confused with consent.
The protest outside Gov. Hochul’s office was not simply about preserving one organization. It was about rejecting the idea that people with disabilities should quietly accept disposability as public policy.
The message from the community was unmistakable:
People with physical disabilities refuse to be invisible.
We are demanding healthcare systems that recognize disability competence as essential, not optional. We are demanding investments that prioritize community living over institutional neglect. We are demanding policies shaped by the lived expertise of disabled people themselves.
And perhaps most importantly, we are demanding that New York finally understand that our lives are worth funding before another vital disability institution disappears.
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.