It started with a rumor in a Facebook group.
The state government's push under former Gov. Bruce Rauner to have 80% of all Illinois Medicaid recipients – including all children under the care of the Department of Children and Family Services – enrolled in a managed health care plan was almost here.
Grace Brown, a pediatric nurse from Wadsworth, is a foster mom to four children, all 4 years old or younger, all of whom require specialized medical care. Her twin 4-year-olds were born with fetal alcohol syndrome, while her two younger foster children have respiratory issues that require home oxygen use.
Brown said someone from IlliniCare Health, a private company originally contracted to run the managed health care plan, had posted in a Facebook group for foster parents about the state-mandated transition.
"Initially, it was very positive information," Brown said. "So I was on board, like, 'OK, this could be good.' They’re offering case managers, more help than Medicaid.
"Then I started doing my own homework end of December, and that's when I realized we had major problems."
Brown is one of many Illinois foster parents who say that the pending change has left them wondering how children in their care will receive specialized medical treatment that many of them need. Some health care providers say they will not accept children in the new managed care organization the state plans to roll out. Representatives from IlliniCare/YouthCare have been ineffective in gathering information, sometimes losing the results of hours-long phone screening interviews, a Shaw Media Illinois investigation found.
The official transition has been postponed twice, and now isn't scheduled until April 1. Foster parents across the state remain confused, angry and lost trying to navigate a complex series of changes that affect about 13,000 children with little to no help from DCFS, the children's caseworkers, or IlliniCare/YouthCare.
"We don't know if we're covered," said Julieanne Neely, a foster mom of two from Chicago. "I've honestly considered paying out of pocket."
With a lack of clear communication on whether or not they have health insurance, which company covers them, or what their costs may be, foster parents told SMI they have moved or canceled doctor appointments for children with specialized needs.
"There’s a lot of panic," said Ericka West, a foster mom from Madison County, near St. Louis. "A lot of what do we do? They’ve chosen a primary care physician for me and I don’t want that one."
In testimony Tuesday before the Senate Human Services and Senate Special Committee on Oversight of Medicaid Managed Care, Danielle Gomez of the Office of the Cook County Public Guardian detailed issues with the rollout for the 19,000 children formerly in DCFS care.
In two cases, a managed care organization insisted to two sets of adoptive parents that the plan's member is the child and that the MCO can only deal directly with the child unless they granted someone else power of attorney to make their health care decisions.
One child was 2. The other was 9.
"No current or former youth in care should be placed in care until there is a plan for better communication," Gomez said.
Late notice, lost information
DCFS sent out a letter to foster parents announcing "exciting new changes coming to your Medicated program on Feb. 1, 2020." According to the DCFS website, the notice was posted Dec. 9, 2019. Subsequent letters were posted on Jan. 6 to foster and adoptive parents.
The letter, provided to SMI, states that all former youth in care will be automatically enrolled in YouthCare, the name given to the plan by IlliniCare, on Feb. 1 if another plan isn't selected by Jan. 15. YouthCare is under the umbrella of Meridian Health.
Not all foster parents received the letter in a timely fashion, though. West said she got hers on Jan. 13, two days before the auto-enroll deadline.
It was Jan. 21 when Brown got the letter for adoptive parents. She never got the letter for foster parents.
Cook County public guardian Charles Golbert, whose office represents about 6,000 children in DCFS care, said he's still hearing from foster parents who haven't been notified about the change.
"The process to figure out if your child’s doctors and therapists and speech therapists are in the network are byzantine and not designed for laypeople," Golbert said.
Brown said she did an hours-long phone screening with a YouthCare representative, only for the company to lose all of the information and call her back weeks later asking for it again.
Neely said YouthCare contacted her on Dec. 6 for an assessment, but the process grew more and more frustrating as she had to spell out her children's diagnoses. A supervisor called back the next day, Neely said, but wanted to go over the entire questionnaire.
She hasn't had a call back since.
"A couple of weeks ago, I start getting a letter in the mail every couple of days. It says we can’t get a hold of you, we need to conduct your child’s assessment," Neely said. "They lost it."
Carolyn Strobel, a Gurnee foster mom to three boys 6 years old and younger, said she felt fortunate that her children's pediatrician has been on top of the transition and said they would figure things out. But it's been a month-and-a-half since she's heard from YouthCare.
Communication with caseworkers regarding the transition to a managed care system has disappointed foster parents, too.
"How can any foster parent or adoptive parent make correct choices when they don’t know what’s happening?" Strobel said. "My caseworker doesn’t know what’s going on. I have an amazing caseworker. I was shocked. They don’t even know what’s going on."
In addition, about 19,000 children formerly in DCFS care were transitioned on Feb. 1 to YouthCare.
Kristine Herman, bureau chief for Healthcare and Family Services, told the senate committee on Tuesday that they have set up a rapid response process to address concerns via phone at 844-289-2264 or email ILYouthCare@Centene.com. YouthCare will also pay for providers if they are out of network, but Golbert said that is only if providers have agreed to participate in YouthCare.
"We are committed to addressing every concern that has been raised about this process, and managed care in general," Herman testified.
Jamie Dornfield, special assistant to the director at DCFS, said in a statement that DCFS has made "significant progress in the past few months" in its health care transition.
"We will continue to move forward with urgency," Dornfield said.
What's the point?
The Rauner administration claimed the transition to managed care would save the state $200 to $300 million a year in administrative costs while providing better health care for children who qualify for the federal program.
But because specialists and some pediatricians aren't in the YouthCare network, it has left parents scrambling to find providers who will take them. In some cases, it's left parents to start from scratch to build up a child's support network.
"The IlliniCare network is wholly inadequate to deal with these special needs kids," Golbert said. "The Medicaid network in Illinois is already inadequate to begin with, especially in more rural areas, and especially for specialists. Once you start limiting that subset to those doctors within the IlliniCare network, it’s really scary for kids who have special needs and kids who live in provider deserts."
Herman told the senate committee that there were parts of the state where there aren't enough specialists, but there are also 83% more providers who are able to serve DCFS youth.
Golbert said it was impossible that YouthCare will expand the provider network.
"Under fee-for-service Medicaid, the network is all providers who accept Medicaid," he said. "Under managed care Medicaid, the network is all providers who accept Medicaid and who participate in a particular MCO."
Northwestern Medicine, which operates hospitals throughout the suburbs and the city of Chicago, will not join the IlliniCare network, spokesman Christopher King said.
"We are not joining IlliniCare because these patients have the option to select other health plans under HealthChoice Illinois," King said. "YouthCare patients can switch to a Northwestern Medicine in-network Medicaid plan - Blue Cross Blue Shield Community, Meridian Health Plan & CountyCare (Cook County Only)."
Golbert, the Cook County Public Guardian's Office and the American Civil Liberties Union are advocating for a longer delay to the rollout until they believe the network is set up correctly. Illinois 64th District State Rep. Tom Weber, R-Lake Villa, sent a letter to Gov. JB Pritzker last week asking for a year delay in order to address concerns.
But without clear-cut answers, foster parents are still in search of solutions.
"It’s such a broken system that nothing surprises me anymore," Neely said. "The longer I am a foster parent, the more aware I become about how limited the resources are for these children. Nothing shocks me anymore."
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