Suzanne Klug and daughter Tamara

“It’s been a nightmare,” said Suzanne Klug, of Des Plaines, whose daughter, Tamara, 21, with cerebral palsy and severe developmental delays, has been forced to find a new primary care doctor, surgeon, orthopedic surgeon, neurosurgeon and neurologist after being enrolled in the new Medicaid program. (Heather Charles/Chicago Tribune)

Several advocates suggested the state had moved too quickly to implement the pilot program.

"Before you put a gun to our head and make us pick a provider, make sure you have sufficient providers enlisted," said Brian Rubin, president of the disability advocacy group Arc of Illinois, whose son, Mitchell, 30, has autism and lives in a group home in Mount Prospect.

Julie Hamos, director of the Illinois Department of Healthcare and Family Services, said she found providers' resistance "disappointing" and suggested it may reflect skepticism about the state's commitment to mandatory Medicaid managed care — a potential response to rising health care costs that has been much discussed but little acted on, until now, in Illinois.

"There has been a 'wait and see if this is going to really happen' attitude that we really have to move beyond," Hamos said. What providers need to realize is that "we have to change our Medicaid delivery system" and that "care coordination is the future of health care in America," she added.

Under a law passed in January, the state has committed to moving half of its 2.8 million Medicaid members to managed care plans by 2015. The hope is that these plans will prevent costly hospitalizations by connecting people with teams of doctors, social workers and case managers, improving access to preventive services such as mammograms, and teaching them how to manage chronic conditions such as diabetes.

To persuade hesitant providers to sign up, IlliniCare is assuring them they'll be paid within 30 days and offering temporary 90- or 120-day "letters of agreement" — a kind of trial run for doctors and hospitals — instead of long-term contracts, said Michael Kinne, IlliniCare president.

Medicaid managed care has a poor track record in Illinois. Prior plans enrolled Medicaid members on a voluntary basis and had little success with controlling costs or, in some cases, providing adequate care. One plan, Amerigroup Corp., paid $225 million to the state in 2008 to settle charges that it had defrauded Illinois Medicaid.

New versions of managed care focus on coordinating care and connecting people with resources, not restricting use of medical services, said Robert Mendonsa, chief executive officer of Aetna Better Health of Illinois.

However bright that promise may be, confusion and disappointment are widespread as Illinois rolls out the first phase of its new Medicaid strategy.

Leonor Vanik, of Pilsen, said that even though she is a legal guardian for her sister, Maria Eugenia Vanik, 41, who has Down syndrome and lives in a small group home in Brookfield run by Seguin Services Inc., she didn't get a notice from the state about new care arrangements.

Instead, she learned from a social service agency that Maria had been automatically enrolled by the state in IlliniCare, a plan that hasn't signed up the primary care physician her sister has seen for more than 15 years.

Medicaid members in this situation can apply for a "case agreement" that allows them to continue seeing a doctor who isn't part of a plan's network. But some providers that have treated disabled Medicaid patients for years won't sign even these limited contracts — a situation that Tony Paulauski, executive director of Arc of Illinois, called "appalling."

If Maria Vanik's doctor doesn't sign an agreement, "I'm going to pay out of pocket for my sister to see him," Leonor Vanik said.

Joseph Mengoni, vice president of residential and clinical services at Seguin Services, which operates 60 group homes in the suburbs, said it was overwhelmed when enrollment packages for 57 disabled residents began arriving at its headquarters.

"We weren't educated enough to explain to families what was happening," he said, noting that Seguin has set up a Sept. 10 meeting to go over the Medicaid managed care program with families.

The situation is very serious for Bethany Abbott, 23, of Schaumburg, who has spina bifida and development delays and a year ago began developing serious respiratory problems.

Abbott has been a patient at Children's Memorial Hospital since she was 2, seen by spina bifida specialists. Last year, when she began having breathing problems, a pulmonologist at Northwestern Memorial Hospital, which has an adult spina bifida clinic, began treating Bethany as well. But neither hospital has joined Aetna or IlliniCare networks. In a statement, Children's Memorial said it had tried to work out single-case agreements with Aetna, to no avail.

Right now, the best option for Abbott appears to be Advocate Lutheran General Hospital, which has joined the Aetna plan and has a child spina bifida clinic. But there is no similar clinic for adults at that hospital, and her mother, Linda Abbott, worries about what that will mean for daughter.

"My concern is that she's not going to get the medical care she needs when she needs it from doctors who know her and her history," Linda Abbott said. "But we don't have a choice with this Medicaid change. There is no opting out."

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