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Many Sick Children In Northwest Indiana Have To Go All The Way To Indianapolis For Treatment

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Why are so many critically ill children in Northwest Indiana having to be driven hours to see the specialists they need to survive? CBS 2 Investigator Megan Hickey reports.

Video Transcript

- 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 forced to drive hours to see the specialists they need to survive?

- CBS 2 investigator Megan Hickey reveals a state law that's standing in the way of kids' care and the new push to fix it.

MEGAN HICKEY: Sick kids on Medicaid live on either side of this invisible borderline. But a few miles in either direction could make a world of difference when it comes to the easy access to care. Three-year-old Journei lives on the Indiana side here in East Chicago, just three miles from Illinois and some of the top pediatric specialists in the country. And Journei needs a lot of specialized treatment.

- Say "warrior."

- "Warrior."

- You're a "warrior?"

- Yeah!

MEGAN HICKEY: This chatty toddler--


MEGAN HICKEY: --is lucky to be with us at all.

KOURTNEI HAMER: The first thing that we were told was that she wasn't going to make it to the morning and that the last option they had for her-- I'm sorry-- the last option they had for her was to place her own ECMO.

MEGAN HICKEY: ECMO is life support for a baby. Journei was on it for nearly a month. Journei's mom, Kourtnei, still tears up thinking about it.

KOURTNEI HAMER: She had her very first open-heart surgery at seven days old. 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.

MEGAN HICKEY: Do you like going to the doctor?

- Yeah.

MEGAN HICKEY: Approximately half of all children under the age of nine in Northwest Indiana are insured by Medicaid. Journei is one of them. And there's a scarcity of pediatric specialists in the area. Riley Children's Hospital in Indianapolis is a great option for care. But it's 160 miles from Journei's home. And here's the problem. It's the only hospital the state of Indiana will pay for.

KOURTNEI HAMER: When you're dealing with a sick child, it's a big deal.

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

STEVEN SIMPSON: This guy here.

MEGAN HICKEY: Pediatrician Dr. Steven Simpson knows the problem well. Over the past 40 years in this office in Gary, Indiana, he's treated generations of kids. And the sickest ones he has to send all the way to Indy. She could get the same treatment 30 minutes away.

STEVEN SIMPSON: Right across the border.

MEGAN HICKEY: Dr. Simpson is one of the physicians who's been fighting for years to even out the Medicaid reimbursement rates to allow sick kids on the border to be treated at Chicago hospitals. But progress has been slow.

STEVEN SIMPSON: In fact, we've been neglected.

MEGAN HICKEY: 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.

Do you go without some of these appointments because--


MEGAN HICKEY: I mean, that's hard.

KOURTNEI HAMER: Especially during the epidemic, yes, absolutely.

MEGAN HICKEY: Is that a hard choice for a mom to make?

KOURTNEI HAMER: It is. Because you get behind. And when you get behind, your child gets behind.

MEGAN HICKEY: Lurie Children's Hospital--

STEWART GOLDMAN: That's a scenario we're well acquainted with.

MEGAN HICKEY: And Comer Children's Hospital--

JOHN CUNNINGHAM: Well, this has been going on for years.

MEGAN HICKEY: --are both less than 24 miles from Journei's house. Both Chicago hospitals tell me they want to treat these sick children on Medicaid.

JOHN CUNNINGHAM: And I would argue that in 2021 in the United States when we ask a child, a three-year-old child, to go to Indianapolis, which is 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.

MEGAN HICKEY: The idea of allowing Medicaid kids to be treated out of state isn't new.

STEWART 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.

MEGAN HICKEY: So there is a precedent for this. This is not coming out of nowhere.

STEWART GOLDMAN: There is a precedent.

MEGAN HICKEY: 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.

- Can you imagine having a child fighting for their lives and having two others wondering where you are and why they can't visit?

- I just want to make sure that--

MEGAN HICKEY: This month, doctors from all over northwest Indiana and Chicago traveled to Indianapolis for a hearing on House Bill 1305--

- Please call the roll.

MEGAN HICKEY: --which, with their help, passed down to the House floor.

MIKE BOHACEK: --as it's an emergency situation.

MEGAN HICKEY: Indiana State Senator Mike Bohacek represents many of these northwest Indiana families.

MIKE BOHACEK: 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.

MEGAN HICKEY: He sponsored the Senate version of the bill. He's staying optimistic about its fate this time around. Because he says families like Journei's--



MEGAN HICKEY: --especially during a pandemic, don't have much time to wait.

KOURTNEI HAMER: I can't blame anyone else but myself when I cancel an appointment or when I say I can't make this appointment. It then goes back on the mother.

MEGAN HICKEY: You feel guilty?

KOURTNEI HAMER: Yeah. But I get tired.

MEGAN HICKEY: But if you could drive 20 minutes, you could keep that appointment.


MEGAN HICKEY: In east Chicago, Megan Hickey, CBS 2 Investigators.

- Indiana House Bill 1305 passed out of the 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 Governor Eric Holcombe's desk for signing.