ICS Makes Good on the Promise of the ADA

When we set out to create the nonprofit organization that became Independence Care System, we started out with an unorthodox belief about managed care.

We believed that for people with physical disabilities and chronic conditions, managed care had great potential. Where others saw a rigid model for minimizing cost and maximizing profit, we saw an opportunity for flexibility. Instead of using Medicaid dollars to warehouse people with disabilities in institutions, we believed that those dollars could be used to deliver on the promise of the 1990 Americans with Disabilities Act, whose anniversary we celebrate today, and the US Supreme Court’s Olmstead decision—that is, to enable people with disabilities to live as independently as possible, in their own homes.

At the time, Medicaid managed care in NYS covered only primary care services to women and children. So with disability rights advocates and my colleagues at ICS’s sister organizations, Cooperative Home Care Associates and PHI, we lobbied the New York State legislature to consider a demonstration initiative. After two years of groundwork, success finally came: in 1997, the NYS legislature passed, and Governor George E. Pataki approved, the authorization of a demonstration initiative that would permit ICS to operate the state’s first Medicaid managed long-term care plan for people with physical disabilities and chronic conditions.

Committed to serving adults with physical disabilities

From the beginning, we were committed to serving adults with physical disabilities—especially people in their 20s and 30s, 40s and 50s. Because the Medicaid long-term care system was not set up to recognize, much less respond, to their needs, our upstart organization had to forge its own path. We saw people with disabilities as the experts on their own bodies and needs; we believed they must be welcomed as active participants in their own care. We began by listening, providing “person-centered” care when that concept was very new. We didn’t tell the members what services they needed. We asked them, and we learned.

We believed that the medical model of care didn’t fit because ICS’s members were not “sick.” Rather, they had ongoing conditions that posed challenges to independent living, challenges that a coordinated system of social, health and home care services could address. ICS went about providing those services as well as creating entirely new services—like a comprehensive, community-based wheelchair program–where none existed. As a result of the partnership we developed with our members, ICS today operates a nationally recognized Disability Care Coordination Model.

Independence is what our members want

Since our inception, ICS has continued to grow. As more adults join ICS, long-time members grow older with us, and increasing numbers of senior adults enroll, we believe more deeply than ever in what our name implies: that independence is what all of our members want. We also believe that the ICS Care System—which we created to be responsive, coordinated, expert, empowering, respectful and flexible—is key to safeguarding that independence.

“The name stuck,” one of our members told me recently, “Independence Care.” She wasn’t thinking of the ADA or the Olmstead decision or the decades of work by disability rights advocates that brought us to this point. She didn’t need to. She had one wish and, thankfully, the right to have it come true.

“I want to be independent,” she said. “Nothing is more important to me than that.”

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