It can take years for people with cerebral palsy, autism, schizophrenia or Down syndrome to find trusted physicians to oversee their health. Now, families and advocates say, those medical relationships are being threatened as Illinois rolls out a new program of HMO-style care for people with serious disabilities.
Many doctors and hospitals are refusing to join the new Medicaid program, which the state hopes will better coordinate care and lower costs for some of its neediest recipients. The providers' rationale: They dislike the bureaucratic hassles and cost-cutting measures associated with managed care.
The ranks of those who have said no, for the moment, include prominent medical centers and physician practices with a long track record of serving the disabled, among them Northwestern Memorial Hospital, Rush University Medical Center, the University of Chicago Medical Center, Children's Memorial Hospital and Loyola University Health System.
Because of the situation, hundreds if not thousands of vulnerable, chronically ill individuals are being forced to find new doctors, some of whom appear ill-equipped to handle their needs, according to consumer advocates and families.
Under traditional Medicaid, people are free to see whichever doctors they like, so long as these providers participate in the government program. By contrast, under managed care, people are required to seek treatment from restricted networks of hospitals and doctors.
"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.
Altogether, almost 40,000 adults with disabilities and Medicaid coverage living in suburban Cook, DuPage, Kane, Will, Kankakee and Lake counties are being affected by the state's push to enroll them in two private, HMO-style plans — Aetna Better Health and IlliniCare Health Plan — that have promised to better coordinate medical care for these needy, vulnerable individuals.
Chicagoans with disabilities on Medicaid are excluded for now but will find themselves in similar arrangements over the next several years if the pilot program expands as expected.
It's the first time Illinois has required managed care for people on Medicaid — a strategy being adopted by many states — and the change is difficult, report consumer advocates who arranged a meeting with state officials Thursday to discuss their concerns.
"To be forced into something like this — it's so disruptive," Klug said.
The first managed care doctor who saw Tamara "had a look of panic on her face when I rolled her wheelchair into the waiting room, and spent less than five minutes with her before mentioning a waiting room full of patients," Klug said.
Despite repeated reminders, a second doctor failed for more than two weeks to order refills for two essential medicines, for pain and muscle spasms.
Klug is still searching for a neurosurgeon who can check the shunts that drain fluid from Tamara's brain; the closest enrolled in her Aetna plan at the moment is listed as more than 30 miles away.
"It's been endless hassles, endless phone calls, endless anxiety," she said.
People with disabilities began learning about the new managed care arrangements this spring; mandatory enrollment is expected to be completed for all but a few individuals in nursing homes by October.
Most worrisome, advocates say, is the absence of experienced, trusted medical providers from Aetna's and IlliniCare's networks.
"The biggest concern we're hearing is that the physicians people have used in the past are not in (their) networks," said John Jansa, program director of the Progress Center for Independent Living in Forest Park. Some physicians aren't equipped to meet the plans' requirements; others are unwilling to do so, said providers who asked not to be identified.
Of Chicago's leading academic medical centers — institutions that tend to treat the most demanding, complex patients — only the University of Illinois at Chicago Medical Center has agreed to join the new Medicaid pilot program, though several providers indicated they were keeping open the option of signing up later. Only one of Will County's four general hospitals has come on board.
Explaining Rush Medical Center's decision to steer clear of the pilot program, Brent Estes, a vice president, said managed care plans tend to impose burdensome administrative requirements and pursue ways to restrict payments to hospitals. In a statement, Loyola University Health System confirmed that it wasn't joining the Medicaid pilot program at this time, in part because "our expenses for Medicaid exceed our reimbursement."
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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