Rally to oppose managed care pilot in Illinois

Disability advocates unite to oppose Medicaid Managed Care program and preserve consumer control

Richard Jesnowski at Rally
Richard Jesonowski speaking at the managed care rally
“I was shocked to learn that I would be forced into managed care,” said Richard Jesonowski, an advocate with Will-Grundy Center for Independent Living who is one of thousands of people with disabilities who will soon be placed into a new Illinois Medicaid Managed Care Pilot Program. “I am angry and concerned about what this will mean for myself and others who need specialists or specialized treatments.”

Thursday morning, Jesonowski joined scores of disability advocates who demonstrated against the new Medicaid Managed Care Pilot Program that is scheduled to begin later this year. Organized by the Community for All Coalition, a network of Illinois disability rights organizations, the demonstration began at Daley Plaza, marched to two insurance companies that submitted managed care bids, then concluded at the State of Illinois Building.

Since the pilot program was announced, the disability community has been organizing to ensure that any new program impacting health care is in the best interest of people with disabilities and produces the best possible outcomes. The current Medicaid Managed Care Pilot does not do so. Instead, it threatens to limit access to specialists, limit access to durable medical equipment (such as power wheelchairs), and eliminate choices for people with disabilities.

Covering up to 40,000 people in a six county area, the pilot program includes people with a wide range of disabilities, with diverse needs and diagnoses that may require access to specialists. If successful, Illinois will extend the program to cover the rest of Illinois. According to Jennifer Thomas of Access Living, a member of the coalition, “Managed care limits access to specialists because of restricted provider networks and because control is taken from the consumer and put into the hands of the HMO, who serves as a gate keeper.” Many people with disabilities have spent a lifetime developing relationships with providers who understand their health concerns. Managed care threatens those relationships and may put people with disabilities under the care of physicians who have limited experience with specific disabilities.

The pilot program emphasizes savings, but Illinois has also failed to make a case for cost savings. Monetary success of managed care is based upon an assumption that care coordination will result in fewer visits to the doctor or the hospital. But for people with certain types of disabilities, increased coordination will not decrease the frequency of health care visits. In addition, under the current Medicaid system, Illinois pays no bills if a person doesn’t visit the doctor all year. With managed care, the state will pay providers whether or not any services are rendered.

In terms of cost saving, there is no more cost effective model than consumer control – a system in which the person chooses his or her own service provider. Disability advocates insist that any new program include consumer control. With consumer control, there is a minimum of overhead, there is no middle person, and the money spent goes directly to provide care. “Nothing about us without us,” said Naketta Kirkland, an advocate with Progress Center for Independent Living who is now covered under Medicaid. “Managed care puts a level of red tape between the consumer and the service providers and takes control out of my hands. Without the input and support of people with disabilities, there is no way the current pilot program will result in positive health outcomes.”

Later in August, Illinois is expected to award two managed care contracts. Five companies applied for the contracts. Of the five companies, just one has responded to a request to meet with the Community for All Coalition. As part of the demonstration, disability advocates marched from Daley Plaza to Harmony Insurance at 200 West Adams and to Centene Insurance at 233 South Wacker. Both companies applied for managed care contracts.

“If the program is going to work, it is critical that it include input from people with disabilities,” said Barb Pritchard of the Campaign for Real Choice in Illinois, a coalition member. “So far, that has not happened.”

The demonstration concluded at the State of Illinois Building, where State Representative Mary Flowers (D-31) and State Representative Lisa Dugan (D-79) spoke. Both Representatives echoed the community’s message, supporting the demand of people with disabilities to retain consumer control.

Prior to implementation of the pilot program, the Community for All Coalition will continue to demand changes, including a provision that enables individuals to opt out of the program.


The Community for All Coalition includes: Access Living, the Campaign for Real Choice in Illinois, ADAPT, Equip for Equality, Progress Center for Independent Living, Springfield Area Disability Activists, and Will-Grundy Center for Independent Living

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