EAST CHICAGO, Ind. (CBS) — Being a sick kid is hard, and taking care of one can be a full-time job.

So why are so many critically ill children in Northwest Indiana having to be driven hours to see the specialists they need to survive?

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CBS 2 Investigator Megan Hickey on Monday night revealed the state law that’s standing in the way of kids’ care – and the new push to fix it.

Sick kids on Medicaid live on both sides of the invisible border line that is the Illinois-Indiana state line. But a few miles in either direction could mean a world of difference when it comes to easy access to care.

Journei, 3, lives on the Indiana side in East Chicago – just three miles from Illinois and some of the top pediatric specialists in the country.

Journei’s mom said her daughter is a warrior. But the chatty toddler needs a lot of specialized treatment – and she is lucky to be with us at all.

“The first thing that we were told was that she wasn’t going to make it to the morning, and the last option that they had for her – the last option that they had for her was to place her on ECMO,” said Journei’s mother, Kourtnei Hamer.

ECMO is life support for a baby. Journei was on it for nearly a month. Hamer still tears up thinking about it.

“She had her very first open-heart surgery at 7 days old,” Hamer said.

Journei was born with several holes in her heart and later diagnosed with a syndrome that causes a range of heart, lung, and neurological issues.

Approximately half of all children under the age of 9 in Northwest Indiana are insured by Medicaid. Journei is one of them.

And there’s a scarcity of pediatric specialists in the area. The Riley Hospital for Children at Indiana University in Indianapolis is great option for care, but it’s also 160 miles from Journei’s home.

But here’s the problem – Riley is the hospital for which the State of Indiana.

“When you are dealing with a sick child, it’s a big deal,” Hamer said.

Right now, Indiana doesn’t pay out-of-state hospitals the same Medicaid reimbursement rates as the ones in the state. So unless a Northwest Indiana family has private insurance, most nearby Chicago hospitals aren’t an option.

Pediatrician Dr. Steven Simpson knows the problem well. Over the past 40 years at his office in Gary, Indiana he has treated generations of kids – and he has to send the sickest ones to all the way to Indy.

Hickey: “She could get the same treatment 30 minutes away?”

Simpson: “Right across the border.”

Dr. Simpson is one of the physicians who has been fighting for years to even out the Medicaid reimbursement rates to allow sick kids on the state line to be treated at Chicago hospitals.

But progress has been slow.

“In fact, we’ve been neglected,” Simpson said.

Because Journei’s mom shares a car with Journei’s dad – who uses it for work – there are days they simply can’t sacrifice seven or more hours for a doctor’s visit downstate.

Hickey: “So do you go without? Do you go without some of these appointments?”

Hamer: “Yes, especially during the pandemic, yes, absolutely.”

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Hickey: “Is that a hard choice for a mom to make?”

Hamer: “It is, because you get behind – and when you get behind, your child gets behind.”

Lurie Children’s Hospital, and the University of Chicago’s Comer Children’s Hospital, are both less than 24 miles from Journei’s home.

“So that’s a scenario where well acquainted with,” said Dr. Stewart Goldman, Division Head of Hematology-Oncology, Neuro-Oncology, and Stem Cell Transplantation at Lurie.

“This has been going on for years,” said Dr. John Cunningham, Chairman of the Department of Pediatrics at the U of C.

Both Chicago Hospitals said they want to treat these sick children on Medicaid.

“I would argue that in 2021 in the United States, we ask a child – a 3-year-old child – to go to Indianapolis, which is for about three hours away, for oncology care when there’s oncology care less than 30 minutes away – it seems to me that we don’t have our values right,” Cunningham said.

Unfortunately, the idea of allowing Medicaid kids to be treated out of state isn’t new.

Goldman: “The State of Illinois allows kids that are near the St. Louis area that are far from a tertiary care center to be treated in Missouri and in St. Louis hospitals.”

Hickey: “So there is a precedent for this. This is not coming out of nowhere.”

Goldman: “There is a precedent.”

We looked into it, and Indiana lawmakers have tried and failed to even out Medicaid reimbursement rates in the past.

This year, however, there may be some traction. Last week, doctors from all over Northwest Indiana and Chicago traveled to Indianapolis for a hearing on Indiana House Bill 1305.

“Can you imagine having your child fighting for their lives and having two others wonder where you are and why they can’t visit?” a mother testified at the hearing.

That bill, with their help, passed down to the House Floor. Indiana State Senator Mike Bohacek represents many of these NW Indiana families.

“It’s an emergency situation,” said Indiana State Sen. Mike Bohacek (R-LaPorte). “We would be paying anyway – and like I said, with that hospital assessment fee the hospitals pay into that the State doesn’t, so that’s a sharing pool for them to offset some Medicaid costs – so there really is no state fiscal, for the most part.”

Bohacek sponsored the state Senate version of the bill. He is staying optimistic about its fate this time around, because he says families like Journei’s – especially during a pandemic – don’t have much time to wait.

Hamer: “I can’t blame anyone but myself when I cancel an appointment, or when I say can’t make this appointment. It goes back on the mother.”

Hickey: “You feel guilty?”

Hamer: “I get tired.”

Hickey: “But if you could drive 20 minutes, you could keep that appointment?”

Hamer: “Oh, yes.”

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Indiana House Bill 1305 passed out of the state House and will soon be assigned to a committee in the Senate. If it passes out of committee and the Senate floor, it will go to Gov. Eric Holcomb’s desk for signing.

Megan Hickey