Illinois ‘care’ a disaster

September 30, 2011

Chicago–The Illinois Department of Healthcare and Family Services on May 1 implemented a five-year pilot program and the state’s first Integrated Care Program for older adults and adults with disabilities eligible for Medicaid but not Medicare.

The program is mandatory, no exceptions. You have to choose between two “medical homes,” Aetna and IlliniCare, and use only the doctors and hospitals in that “medical home.” The program promises “better coordination of care, as members work with a team of providers to give them the best possible healthcare.”


The program is supposed to save the state millions of dollars. One way it purports to do this is by offering the doctors a set payment whether they see a patient or not, as opposed to the usual pay per visit. In my daughter’s and my experience, the program takes the “health” out of healthcare.

“Team of providers?” In our experience there is no team. Our Primary Care Provider said that she has no idea who else is in the Aetna network and does not have the time to look at the book Aetna sent her that lists all the providers. She is unable to refer us to a specialist within the Aetna system. We are on our own finding them. Teamwork is crucial for people with complicated medical needs. The doctors must communicate with each other and coordinate their care. That is not happening.

My disabled daughter needs many specialists to manage her complex medical needs. When I called to find doctors for her, they didn’t have any that were reasonably close to us. The most important doctor my daughter needs is a neurosurgeon. The only neurosurgeon both Aetna and IlliniCare have is in Kankakee! It is unreasonable to expect people to drive from Chicago to Kankakee to see a specialist (from where I live that would be a 150-mile round trip).

Every time over a two-month period that I called Aetna to find providers they simply did not have, I was told that “new providers are being added every day.” That was not our experience.


The most disturbing part of this program is some of the doctors. The first Primary Care Provider we visited had a complete look of panic on her face when I wheeled my daughter into the room. She did not examine her, ask any questions, or even acknowledge her presence in the room. What should have been a double appointment (at my request) turned into five minutes with the doctor talking about her “waiting room full of patients” and escorting us out of the exam room.

Our visit to an orthopedic surgeon was even worse. My daughter has multiple leg and hip problems from cerebral palsy (CP). She has painful arthritis and bursitis in her knees and hips. She has had multiple surgeries on her legs including the removal of a femur bone from one leg. She has had a spinal fusion and has metal rods in her back.

What I was expecting from that doctor was for him to examine her legs, check her range of motion and order X-rays to check the progress of her arthritis and bursitis. I also expected him to deal with her constant complaints of pain in her leg, which requires heavy-duty pain medicine. He did nothing. He could not seem to understand why we were there.

When I asked him about examining her, he said that, since we didn’t have an “immediate problem,” he didn’t need to. I again listed all her problems and asked him what about all of them wasn’t “immediate” and he had no answer. We ran into this attitude again and again with every doctor we visited in the Aetna system. This is not healthcare.

People with disabilities and those with chronic health conditions require more attention at the doctor’s office. Part of the problem is the nature of managed care itself. The “managed” part is doctors being told how long to see a patient, how many patients to see in a day, etc. Many good doctors don’t want to sign up for this program, which limits their ability to offer comprehensive healthcare to the people who need it the most.


I am worried about my daughter’s life. She needs a neurosurgeon to monitor the shunts in her brain that drain excess spinal fluid from it. She could easily die quickly from a shunt malfunction if it is not caught ahead of time. She needs an orthopedic surgeon who will monitor her many needs from the CP in her legs and do X-rays to check for the many fractures she gets, just from sitting in her wheelchair all the time.

This program is a disaster for the many people who are now forced to depend on it. Quality healthcare does not come from herding everyone with disabilities and chronic health problems into a program with seemingly incompetent doctors, third-tier hospitals and an attitude of uncaring from the people at Aetna. The State of Illinois has five years to prove that this program saves them money. I wonder how many people have to die for them to meet their goal.

–Suzanne Klug

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