WHITE HEATH, Ill. (WCIA) — For now, the uncertainty is over.
It lasted only a few days, but it had been palpable in Brandi Allen Wilske’s home since the moment she’d learned her son, Carter, appeared to have lost his Medicaid coverage — something he is legally due because of his status as a Department of Children and Family Services-subsidized special needs adoptee.
She’d driven to OSF Children’s Hospital in Peoria last week, four-year-old Carter in tow, for yet another doctor’s appointment: In addition to dealing with cerebral palsy, doctors recently told her that her son had a trachea the size of a newborn’s.
Treatment, they said, needed to happen “quickly.”
“The subject of insurance, of course, came up when I checked him in,” she said. “They said, ‘It’s showing him as not active.'”
Wilske thought she’d done everything right: Ahead of a planned and announced DCFS transition to using managed care plans to administer Medicaid services, Wilske had done her homework and chosen Molina Healthcare of Illinois as her son’s plan manager.
But it was doing everything right that temporarily affected her son’s status in the state’s insurance system, according to Illinois American Civil Liberties Union’s Heidi Dalenberg, who is the director of an ACLU project aimed at reforming DCFS.
“Before February 1, if you were paying attention, you could look at the choices of managed care providers available to you,” she said. “You could make a choice and enroll in that program.
“Apparently, people that made advance choices got lost in the system, somehow. They showed up in computer systems and their pharmacies or doctor’s offices as ‘not existing anymore’ or not approved for Medicare payments.”
The “glitch,” as Dalenberg called it, affected around 2,500 children.
WCIA reached out to DCFS for comment; DCFS rerouted the request to the Illinois Department of Healthcare and Family Services. Spokesperson John Hoffman said no children lost any insurance coverage, despite appearances to the contrary.
“Although their status was not timely updated in the appropriate systems, no one lost coverage at any time and the Department… responded immediately to correct the error, resolving it within days,” Hoffman said in an emailed statement.
That wasn’t Wilske’s experience. She said she spent five days making calls to various state agencies, lawmakers and others, trying to find help.
“No one could tell me anything,” she said. “There doesn’t seem to be one certain person to call and that’s part of the problem: No one is being held accountable for any of these problems.”
Given her son’s condition, Wilske became anxious, worrying that Carter wouldn’t be able to get the treatment he needed, quickly.
“We got set up for his surgery, which is coming up pretty quickly because like I said, every day he seems to get a little bit worse,” she said. “I kind of panicked.”
It took days to get an answer. Finally, someone from DCFS explained.
“What they explained to me was: ‘We don’t know what happened. There was a glitch in the system and Carter was taken off of insurance and never put back on.’ And that’s their explanation. You’re kind of just left in the dark.”
Ask State Senator Chapin Rose, R-Mahomet, who was one of several lawmakers skeptical of DCFS’s ability to oversee the transition to managed care plans, and he’ll say it wasn’t simply a computer error.
“They literally took children who they didn’t know (their Social Security numbers) and instead of finding out what they were, they entered zeros into the computer,” Rose said. “Just 000-00-000. That, then, made their applications invalid and rejected all these kids from healthcare. To just hit zeros — and then, ‘Who cares?’ And have this happen to kids and their families is horrible.”
Despite the HFS statement to the contrary, Rose said he’s had “a couple” calls to his office from constituents who believed they lost their insurance after their children no longer appeared in the system.
State Senator Scott Bennett, D-Champaign, also raised concerns, then issued a press release on the matter following the glitch.
“There is a lack of communication with the agencies and it’s being taken out on the families,” he said. “We need to ensure these individuals have access to the health care they need and are kept informed – we have to stay aggressive to get this resolved.”
Wilske was able to get her situation resolved earlier this week — but it took time and constant calls on her part, she said.
“Unfortunately, sometimes you don’t know until you’re at the doctor’s office and they say, ‘Hey, your child is not active,’” she said. “It’s a big stress and there needs to be more education out there as far as the transition. If you happen to get ahold of the right people, they’ll help you.”
Children like Carter aren’t the only ones who will transition to managed care plans. Dalenberg said the ACLU had been legally pushing DCFS to postpone the transition date for all Medicaid-covered children. A longtime lawyer in Chicago, Dalenberg was involved with the 1988-era B.H. vs Smith lawsuit that led to a consent decree with DCFS that largely covers children currently in foster care. Adopted children like Carter “aren’t part of the class of children I’m the lawyer for,” Dalenberg said. “We didn’t have quite the same power.”
Former foster children and adoptees transitioned on February 1, but Dalenberg said the date for current foster children had been successfully pushed back to April 1.
After the February 1 debacle, Dalenberg said the court system appointed someone to work with HFS to “try to make sure they’re doing the appropriate planning this time around.”
“We have a binding agreement with HFS and DCFS that requires them to hit a bunch of benchmarks before they proceed on April 1,” she said. That person “is going to be looking at documentation they give her on March 16 and (if necessary) she can order them to push the date back further. She won’t insist that everything be perfect but she will be applying her judgment as to whether they’re ready enough.”
Rose said he doesn’t believe the state is ready for the next transition, which will be slightly smaller than the last: on February 1, 19,000 children were impacted but on April 1, 13,000 children will be.
“That one, they’ve already been warned they’re not prepared for it,” Rose said.