Rebecca and Bruce Austin in central Illinois have six kids ranging in age from 4 to 22.
Five kids still live at home, and all of them came to the Austins through the foster care system. All told, they see 14 doctors.
When parents agree to foster or adopt children from the foster care system, many states promise to provide health care for the children, usually through Medicaid. But recently, thousands of children in Illinois temporarily lost coverage when the state switched their health plans to managed care. Some of the Austins' children were caught in that coverage gap, and more insurance changes are coming soon. The Austins are worried whether the state will fulfill its end of the bargain.
Three of the Austins' children see psychiatrists. One has regular visits with specialists for epilepsy and other health conditions. Another has therapy four times a week for movement and speech delays.
"A typical day is pretty crazy," Rebecca Austin says. "With all the doctors' appointments and therapies and appointments and stuff, I'm on the go all the time."
The Austins live in Windsor, a rural town about 25 miles from the nearest hospital, in Charleston, Illinois.
Since February, the state has been moving all current and former foster children covered by Medicaid into health plans provided by private insurers that contract with the state.
This shift into Medicaid managed care has many families like the Austins concerned, because the first phase of the rollover was rocky and because families are not sure whether their doctors and therapists will be included in the new plans' networks.
The next phase of the transition will begin soon. Illinois will move another group of 17,000 children into the managed care plans, and the Austins' foster daughter will be among them. Austin worries that her daughter will be forced to switch to a new therapist an hour away, since the one she sees nearby is not in the managed care network.
"She has established a relationship with that counselor. She's been going there for almost two years, and now we have to start all over again," Austin says. "And that's trauma. That's a huge trauma."
The coronavirus pandemic has already disrupted the children's care. Schools are closed and therapy sessions have moved online, but remote learning and telehealth treatment can be difficult for children with special needs. Many parents worry that their children's progress will erode the longer the situation continues.
"The therapies have been on hold for the most part," says Austin. "It's been very stressful. The kids have a hard time understanding why they can't go to school. We struggle everyday and do the best we can."
Betsy Crosswhite says her son Shane has struggled to do individualized therapy over the Internet. Crosswhite and her family live in the Chicago suburb of Wilmette. She and her husband have three kids, including Shane, 15, who is on the autism spectrum.
Shane has difficulty coping when his routine is disrupted, Crosswhite says. When they tried a video conference with a speech therapist from school, it didn't go well.
"It was me chasing him around with the camera while [the speech therapist] is trying to even do one or two things for him. And it just didn't work out," Crosswhite says.
"I think it's really uncomfortable for him," she adds. "It's not routine. It's not the norm of what I'm asking him to do and pushing him to do."
States moving Medicaid to managed care
Most states already use managed care companies to run their Medicaid health plans, which means state agencies pay insurance companies to manage the health care of residents on Medicaid.
Proponents of the managed care model say it can lower costs while increasing access to care.
States that switch to managed care often find that their budgets become more predictable, because they no longer pay providers for each service. Instead, they pay insurers a set amount per enrollee for all health care needs.
Research from the Robert Wood Johnson Foundation shows there's little evidence that switching Medicaid to a managed care model actually saves taxpayer dollars, except in a few states. The research also showed Medicaid managed care has had only "mixed success" in improving access to care for patients. Michael Sparer, a professor of health policy professor at Columbia University, conducted the study and says for that switch to be successful, states must hold insurers accountable for their contractual promises to maintain an adequate networkof providers, including specialists.
Sparer says success with Medicaid managed care also hinges on whether states "have the ability and have the oversight that's required to make sure that the program works effectively."
In recent years, Illinois switched most of the state's Medicaid enrollees into managed care. Former foster children moved onto those plans on Feb. 1, and current foster children are set to eventually join them. The switch was initially planned for April 1, but the state has postponed the move because of the coronavirus pandemic.
Some advocates for children questionwhether the move is in the children's best interests.
Many foster children have serious physical and mental health needs, and the switch could disrupt long-standing relationships with therapists and other providers, critics of managed care argue.
Austin says her family found a managed care plan that allowed them to keep most of their children's providers. But when the February switch was finalized, some of the Austin children were among the 2,500 former foster kids whose health coverage was interrupted.
The "end date" for her kids' coverage had been incorrectly listed in the computer system as Jan. 31 — one day prior to the coverage start date, Feb. 1, Austin said. This effectively left them without insurance. State officials blamed a glitch in the system for the error.
John Hoffman, a spokesman for the Illinois Department of Healthcare and Family Services, said in a statement that the agency worked "immediately to correct the error, resolving it within days."
For the Austins, the error meant they had to cancel appointments and had problems getting prescriptions filled.
"My daughter who has epilepsy, her medicine was ... a little over $1,000," Austin says. "I didn't have $1,045 to pay for the medicine, and so we were in a panic as to what to do because she had to have the medicine."
Phone calls to pharmacies and insurers were onerous, she says, but she ultimately resolved the issue. Still, the Austins' youngest, 4-year-old Camdyn, missed two weeks of therapy sessions while they waited for the new insurer to approve them. Austin worries that these delays will slow his progress.
Making Medicaid managed care work
Heidi Dalenberg is an attorney with the ACLU of Illinois, which serves as a watchdog for the state's child welfare agency. She says managed care can be beneficial, helping ensure all kids get regular well-checks and preventing doctors from overtreating or overmedicating children.
But those benefits will be realized only if the state has prepared for the transition and holds insurance companies to their contract requirements, she says. That includes ensuring managed care organizations, or MCOs, have appropriate provider networks so children have access to doctors close to home.
"When it doesn't work is when you have an MCO that is more worried about cutting costs and denying approvals for care than they are in making sure that kids get what they need," Dalenberg says.
A retired federal judge is monitoring Illinois' efforts to ensure foster children don't lose access to care in the switch to Medicaid managed care, Dalenberg says.
Hoffman, the Department of Healthcare and Family Services spokesman, says the switch to managed care, provided by the insurer HealthChoice Illinois YouthCare, will help improve health care for current and former foster children by coordinating and providing services.
"Right now, when a family needs a provider for their child, they're left to navigate a complex system alone," Hoffman said in a statement. "With YouthCare, families have a personal care coordinator who helps manage their overall care, researches providers and schedules appointments."
The problems caused by February's glitch have been resolved, Hoffman says, and will not resurface when the new group of 17,000 current foster children is eventually transitioned into managed care plans as well.
Officials also say that if providers are not in network when the switch goes into effect, they can still be paid for services during a six-month "continuity of care" period, and insurers will try to expand their networks during that time.
The Austins are trying to be optimistic, but say the state's track record doesn't give them much assurance.
Lee Gaines contributed to this story.
This story is part of a partnership that includes Side Effects Public Media, Illinois Public Media and Kaiser Health News.
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