SPRINGFIELD -- When Jacob Callarman of Westmont began to look pale and had trouble breathing last year, his mother took him to the same set of doctors that have been helping him since birth.
Callarman, 23, was born with a rare syndrome that left him with no esophagus, a narrow trachea and other medical complications, including scoliosis.
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New managed care programŸ About 35,000 people are enrolled in suburban Cook, DuPage, Kane, Kankakee, Lake and Will counties.
Ÿ The collective cost of their care now is about $400 million.
Ÿ Proponents of the plan say it could save money and improve care because a coordinator can follow up with patients and make sure they get what they need, avoiding costly emergency room trips or unnecessary medical procedures.
Ÿ But not all hospitals and specialists signed onto the pilot program in the suburbs, forcing some patients to leave doctors they had trusted for years.
Ÿ More hospitals and doctors are joining the program now, which is reducing the disruption, disability advocates say.
Source: Daily Herald interviews
Given that lifetime of challenges, his mother, Denise Callarman, knew they could skip a trip to the emergency room and go to Loyola University's doctors in Burr Ridge for medication.
"We go to Loyola, and lo and behold, they say, 'We can't take him here,'" Denise Callarman said.
Shortly before Jake's episode, the state had begun a pilot project in the suburbs that puts certain elderly and disabled patients in the Medicaid program into managed care plans -- an idea intended to improve their health and save the state money by eliminating unnecessary procedures.
But not every hospital and their specialists agreed to join the program immediately, leaving some patients like Jacob Callarman without the doctors they've grown to trust and depend on for years -- more than 20 years, in Callarman's case.
Now, at a time when the state is eyeing massive future cuts to its spending on health care for the poor, the experiences of these patients could foreshadow the difficulty looming for more Medicaid patients in the suburbs and across the state.
In short: Change could be hard.
Gov. Pat Quinn has asked lawmakers to cut Medicaid spending by about 18 percent, and Illinois already has a law on the books requiring state health officials to have 50 percent of the state's Medicaid users onto a similar managed care program by 2015.
"If this plan doesn't work," says state Rep. Patti Bellock, a Hinsdale Republican and Medicaid expert, "it'll be very difficult to go forward with the future plan."
Jacob Callarman eventually got the care he needed from a doctor his mother knows well. The doctor listened to his breathing and prescribed medicine, but not in an expected place.
"We got medical treatment from a doctor in her home in her laundry room," Denise Callarman said.
The elderly and disabled Medicaid patients in the suburban pilot were told to pick from two insurance plans that had programs to help guide them through the health care process.
It could be especially helpful for people with no support system -- the homeless, for example -- who gain a coordinator who tracks their health care needs and can communicate that to any hospital a patient goes to.
"It's about looking at the entire person," said Robert Mendonsa, chief executive officer of Aetna Better Health, one of the two health plans involved.
But not everything went smoothly. Many suburban hospitals are in the program, but some of the hospitals that suburban patients attend aren't. And not all of them were on board at the beginning, leading to the potential for interruptions in health care.
"The person's life and their whole medical status is put on hold," said Tony Paulauski, executive director of disability advocate Arc of Illinois.
Despite the challenges, Paulauski thinks managed care is generally a good idea that just wasn't implemented smoothly. And as more hospitals sign on with the state-chosen insurance companies, things are getting better.
"It is starting to show signs of improvement," Paulauski said.
It's clear the state needs to find savings in the Medicaid program. At $15 billion a year, it's Illinois' biggest annual expense, and it's only growing.
Over the past six years, Illinois' Medicaid population has grown by 30 percent -- and often much faster in the suburban collar counties.
Medicaid enrollment since 2006 jumped 103 percent in McHenry County, 89 percent in DuPage County, 84 percent in Will County, 76 percent in Kane County and 73 percent in Lake County. Cook County Medicaid enrollment, including suburban Cook County, grew 19 percent.
That might be a reason the suburbs were chosen to test the managed care concept. Department of Healthcare and Family Services spokesman Mike Claffey said the program also could work better in the suburbs, where population is more dense and doctors more available than in some rural downstate areas.
"It's going to take time," Claffey said. "It's not an overnight thing."
The disabled and elderly Medicaid community were chosen, Claffey said, because medically complicated cases stand to benefit most from having a coordinator manage their care. That way, someone can share information among specialists and perhaps encourage better medical results.
Plus, he said, the 20 percent of the population that comprises the pilot program accounts for 60 percent of the state's Medicaid costs. In the suburbs, the managed care program accounts for about $400 million worth of medical bills a year.
With that in mind, the state sent out an official call for companies to start submitting proposals to meet the goal of having 50 percent of the total Medicaid population into managed care plans by 2015.
No estimates of savings from the year-old pilot program are available yet.
Hospitals say they take a financial loss when treating Medicaid patients because the rate at which the state reimburses them is already low.
"They have to determine whether it makes sense for them from a health care services standpoint," said Danny Chun, spokesman for the Illinois Hospital Association.
Some of the hospitals that don't participate are in the process of working out deals with the two insurance programs -- Aetna Better Health and IlliniCare Health Plan.
Loyola officials say they're going to wait and see.
"As we observe how this pilot program is working at other hospitals, we are evaluating how Loyola could best fit in," reads a statement from Loyola University Health System. "Currently, Loyola does not have contracts with the managed care organizations used in the program."
IlliniCare officials say they're working hard to bring hospitals in.
"We continue to work diligently to expand our network," said Sherry Husa, CEO of IlliniCare Health Plan. "We've recently finalized contracts that have increased our network significantly."
Mendonsa, with Aetna, says they've nearly doubled their network of doctors and hospitals, too, and are trying to gain more.
"We pay no less than Medicaid," Mendonsa said. "And we pay on time."
But the fact that it's taken time has caused difficulties, especially because, Denise Callarman said, there isn't a surplus of doctors who take on complex cases to begin with.
"Once you get a physician that says 'yes,' you don't let them go," she said.
State lawmakers are meeting now to talk about how they might cut the $2.7 billion Quinn has called for.
But because it is an election year, it's unclear how much will get done on the politically contentious issue before November.
Cutting back spending on health care for the poor can disrupt the lives of patients across the state. But doing nothing could further hamper a state that is likely already facing a grim financial future.
It's a rock and hard place that Lake Forest mother Mary Ann Barry says she understands. Her adult son Trevor has autism and lives at a Clearbrook group home in Buffalo Grove.
Barry said Trevor has had more seizures and behavior problems after he was told to change medications by one of the insurance plans. She says that as a taxpayer, she understands that the state needs to look for savings.
"I get both sides," Barry said. "As a parent, that trumps everything."