Marlon Millner had been waiting three months for his children’s Medicaid applications to be processed when his 11-year-old son EJ busted his lip at basketball practice.
Like any worried father, he rushed his son to the emergency room. But when he got to the hospital, he wasn’t sure how he would pay the bill. The doctors recommended that EJ see a dentist. But Millner didn’t know how he would afford that either.
The Millner children are among tens of thousands of Illinois residents who’ve been waiting months for access to health care as the state slogs through a backlog in determining who’s eligible for Medicaid. As of March 15, more than 112,000 Illinois Medicaid applications remained unprocessed beyond the 45-day limit the federal government puts on those eligibility determinations.
The federal Center for Medicare and Medicaid Services has warned state officials that Illinois is out of compliance with regulations on timely determinations of eligibility for the federally funded program to provide health coverage for low-income people and asked how they plan to fix that, records show.
If a case is delayed past the federal time limit, Illinois Medicaid applicants are supposed to be able to get cards granting them temporary medical benefits. But those also are backlogged. The state’s Medicaid application-processing delays and failure to issue temporary medical benefits have left some of Illinois’ poorest residents without access to health care, in some cases for more than a year.
Illinois provided no temporary medical benefits at all between June 2016 and September 2017, state Department of Human Services records filed in federal court show.
The state has issued temporary medical cards to some whose cases have been delayed, but that’s been done rarely.
In May 2018, the Sargent Shriver National Center on Poverty Law, the Legal Council for Health Justice and the law firm Sidley Austin filed a motion in federal court to enforce a 1979 Illinois consent decree that requires the state to provide temporary medical benefits on request to people whose Medicaid cases have been delayed past the federal time limit.
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Stephanie Altman, director of health care justice at the Shriver Center and one of the lawyers for the plaintiffs, said settlement negotiations over the “historic delays” continue. The state has resumed sending notices of possible entitlement to temporary medical assistance, according to Altman. But once people get these notices, they still have to apply for the temporary benefits.
In February, the state issued more than 30,000 notices of what’s called possible entitlement to temporary medical assistance to people whose applications had been delayed 54 days past their application date. But just over 2,000 people actually received temporary medical cards that month — about 7% of those notified they might qualify.
“We’re not seeing the numbers of temporary cards that we think we should see,” Altman said. “And ultimately we want no temporary cards. We want everybody to get determined in 45 days. We want the state to work on the backlog.”
Jordan Abudayyeh, a spokeswoman for Gov. J.B. Pritzker, said: “It is unacceptable that people across the state are waiting for healthcare coverage, and he has directed the administration to take immediate steps to address this problem from the previous administration.”
In a written statement, the heads of the Illinois Department of Healthcare and Family Services and the Department of Human Services said: “Our departments are working together closely to bring on more workers to process applications and redeterminations, as well as training and technical experts to support front-line staff.”
Karyn Britt, an outreach enrollment specialist with TCA Health Clinic in Altgeld Gardens on Chicago’s South Side, said she regularly sees patients with high blood pressure, diabetes and asthma who can’t get the medication they need. Many end up going to a hospital.
“The emergency room will write a prescription, but they won’t be able to get it filled,” Britt said. “If they give them an asthma treatment there, the next day they’ll be back needing another treatment because that’s the only place they can go.”
Millner, 46 and a widower, lives in Evanston, where he’s a doctoral candidate in religious studies at Northwestern University. He said he applied online last September for Medicaid for his two kids and made multiple trips to the state Department of Human Services office in Skokie, bringing his kids’ birth certificates and documents verifying his income. Often, he said, he waited for hours to be seen. He couldn’t get the application processed even when he was able to meet with someone.
“You’re literally throwing documents into a black hole,” he said.
In February, Millner finally received the medical card for his children. That was five months after he applied. And he got results only after contacting his state senator for help.
According to state data, the Medicaid backlog rose steadily through 2017, reaching a critical point that October, when the state began using a new computer system to process applications, according to Carrie Chapman, director of advocacy for the Legal Council for Health Justice. The new computer system had problems with new applications and so-called redeterminations. In some cases, people who were still eligible were cut off during the yearly renewal process and had to reapply, Chapman said.
She said another factor has been the “diminished workforce” to deal with the Medicaid backlog. With Illinois facing chronic budget problems, the human services agency lost staff under former Govs. Bruce Rauner and Pat Quinn, which made it harder to deal with the backlog, according to Chapman.
Iraida Patiño, 25, who works at an immigrant social services organization in Chicago, hasn’t seen a doctor or dentist in two years. Patiño said she applied for Medicaid in November 2017. She got a letter of possible entitlement to temporary medical assistance the following August and a temporary medical card in September after spending a day waiting at the human services office in Skokie.
In October — 11 months after Patiño applied — she got a letter saying her Medicaid application was approved. But before she could go to a doctor, her coverage was canceled. The reason the state gave her was that she hadn’t turned in a redetermination letter.
So she reapplied. And she was given another letter of possible entitlement for temporary medical assistance. But she said that, knowing the wait she’s likely to face, she hasn’t been able to make the time to go back to the state office in Skokie.
“I need to take time out of work to go to the office to fix everything,” Patiño said. “It’s a waste of my time pretty much to sit in an office the whole day.”
Stephanie Castrejon, who has worked as a certified application counselor at Heartland Health Centers on the North Side since January 2018, said processing times have gotten better but that many of her clients still end up waiting more than 90 days for their applications to be dealt with.
“We have had cases here that have been waiting for over a year, and no case worker has touched the application yet,” Castrejon said.
Charlotte Brown, who works for Christopher Rural Health in southern Illinois, said most Medicaid applications in her part of the state are processed within two weeks but that it often takes months to get newborns added to their mothers’ Medicaid cases.
Afton Williams, 25, worked at a tire shop before becoming a stay-at-home mom in downstate Eldorado and has been on Medicaid for two years. She said she didn’t have any problems with her own Medicaid application but that her daughter Wylee was nearly 3 months old before she was approved for coverage.
That meant Williams was left with the bill following the baby’s first post-hospital checkup and couldn’t pay it. So the clinic where she took Wylee wouldn’t see the baby again for her one-month checkup and vaccinations unless Williams paid $300 upfront.
“Literally, I cried in the waiting room,” Williams said.
She said she felt like a “terrible parent” for not being able to afford a doctor’s visit for her baby. Ultimately, she said she took her daughter to the health department for vaccinations and paid out of pocket.
And she kept getting bills she couldn’t pay — including a hospital bill for nearly $8,000.
“My medical card paid for my medical bills while I was in the hospital, but I didn’t even know they billed your baby separately,” Williams said. “I was freaking out.”
With Brown’s help, she got a medical card for Wylee at the end of December, just before the baby turned 3 months old.
The American Academy of Pediatrics recommends checkups for babies three to five days after birth and then at one month and two months. So Carrie Chapman of the Legal Council for Health Justice says the 45-day federal limit to decide Medicaid eligibility doesn’t make sense.
“Newborns are missing those important early visits because those newborns’ Medicaid isn’t active,” Chapman said.
She said that she has seen newborns remain stuck in costly neonatal intensive care even after a doctor recommends they go home because, without a medical card, they would be without the prescriptions or medical equipment they need.
The Shriver Center and Legal Council for Health Justice is part of a coalition called Protect Our Care Illinois that’s lobbying for a measure in Springfield, Senate Bill 2021, that would make real-time eligibility for Medicaid applications happen by electronically matching data with other government agencies’ records to make it possible to quickly verify identity, income and residency.
“We have tens of thousands of people waiting for an unacceptably long time to receive care while their eligibility determination stalls,” said state Sen. Heather Steans, D-Chicago, who introduced the bill.
Graciela Guzman of the Protect Our Care Illinois coalition said the proposal would speed processing and “vastly improve the quality of care.”
Guzman has a 4-year-old goddaughter covered by Medicaid who needs seizure medication, but her coverage was temporarily cut off at one point because of a paperwork error.
“For us, even a day without coverage is a really risky situation, and it’s frightening and scary,” Guzman said. “That’s not a situation that our family or any family should have to go through.”
Afton Williams recently took her daughter Wylee back to the doctor for her 6-month appointment. Now that she has her medical card, Wylee is back on the recommended infant checkup schedule.
“I’m often just glad it’s all over because that was a nightmare,” Williams said of how “super-duper stressful” the early months were for her family. “Three months is entirely too long to wait.”
Becky Z. Dernbach is a graduate student at Northwestern University’s Medill School.