Families with sick children in Medicaid want easier access to out-of-state hospitals

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Elizabeth Zakutansky, 3 years old, was born with a rare genetic condition that causes multiple seizures. Her neurologist, a top expert in treating her condition, is practicing at the Lully Children’s Hospital in Chicago, less than an hour’s drive from Zaktansky’s home in Hobart, Indiana. Her parents want her to take care of all her there.

However, Lully did not continue Elizabeth’s treatment because her insurance company, Indiana Medicaid, paid far less to out-of-state health care providers than in-state facilities. This is true for most state Medicaid programs. Therefore, Zaktansky consults with Lully’s neurologist at his own expense, who gives detailed instructions to the local pediatrician regarding Elizabeth’s care.

But when Elizabeth suffers from an uncontrollable seizure, she needs immediate intervention. Her parents have to separate the two teenagers from school, and the whole family drives for two and a half hours to Riley Children’s Hospital in Indianapolis, the only specialized pediatric facility in the state. If she has to be hospitalized, the family may have to leave her there to return to work or school.

Elizabeth’s mother, Laura Zaktansky, said, “It’s terrible to leave your daughter and go home far away.” “You aren’t there to comfort her. You can kill her in one seizure. What would you think about it if you weren’t there?”

Making the highest quality care available in out-of-state children’s hospitals for children with complex healthcare needs has long plagued families, healthcare providers, and Medicaid programs. Choosing an out-of-state hospital can be a matter of convenience for patients and their families, and it also means ensuring state-of-the-art care as we have only a limited number of hospitals and doctors in the country. You may have the skills and experience to best treat a child with a particular condition.

Congress recognized the problem. Two years ago, it passed a law allowing the state to voluntarily establish a “health home” program. This may make it easier for out-of-state healthcare providers to act as coordinating caregivers for children with complex conditions. Participating countries will receive a temporary backing of federal Medicaid funding to initiate the program. However, the Medicare & Medicaid Service Center said there was no “clear timeline” to issue state guidance on how to set this up.

State Medicaid officials claim that the state cannot afford to send children to out-of-state facilities that demand higher payment rates. Children’s hospitals say they only want the same price that Medicaid pays to health care providers in the state. The complex problem is that most states have private, managed managed care plans that run programs, and those plans determine which providers patients can go to and how much to pay for them.

However, Indiana lawmakers have submitted a bill to make Medicaid payments to children’s hospitals in bordering states of Illinois, Kentucky, Michigan, and Ohio almost equal to those in the state. Currently, Chicago facilities may be reimbursed for about a quarter of what Indiana hospitals receive for the same service. Both the House of Representatives and the Senate have passed a version of the bill, and they are expected to quickly adjust the differences and send it to the governor. Expected annual costs to the state range from $ 300,000 to $ 950,000. The bill will have to be re-approved within two years to address the fear that it may cost more.

“These families need to take a three-hour break to Indianapolis in the snow for another six weeks if they try to change their schedule,” said Senator Mike Bohacek of the State Republican Party, one of the bill’s leaders. You may have to wait. ” sponsor. He faced his daughter and the situation, born in 2001 with Down Syndrome and a serious condition. “I can do better”

Almost 90% of children’s hospitals serve out-of-state patients, with an average of six or more states paying, according to a report by the Federal Medicaid Commission last year. Two-thirds of the state pays out-of-state hospitals at lower rates than in-state facilities. Children with complex medical conditions account for 40% of Medicaid’s pediatric spending.

Children’s hospitals say that negotiations for payments often take longer than providing care, with approval from Medicaid agencies and managed care programs for treating children outside the state. They need to arrange a personalized case agreement for each patient.

Dr. John Cunningham, chief physician at Kammer Children’s Hospital in Chicago, said hospital staff had recently resected a brain tumor from a child in northwestern Indiana. However, Medicaid refused payment transactions that would allow Kammer to continue treating the patient, forcing the family to go to Indianapolis for follow-up care.

“The transfer wasn’t due to care, because of an artificial boundary called the state border,” said Cunningham, who is treating 275 children in northwestern Indiana and hiring lobbyists to drive the Indiana bill. It was. ” “It’s a fundamental problem.”

However, Medicaid officials say sending children to out-of-state facilities can be too expensive and interstate travel may not be best for families. “When a children’s hospital takes pride in being the best pediatric center in various conditions, it knows people are coming and doesn’t have to negotiate,” said the Secretary-General of the National Medicaid Board. Matt Salo said. “It’s’take it or leave it’. It’s unfair.”

Some states and children’s hospitals were able to make broader deals. For example, the Medicaid Program in Illinois has arranged to pay a state fee for St. Louis Children’s Hospital to serve children in the East St. Louis area of ​​Illinois.

In contrast, Philadelphia Children’s Hospital leaders said their facility was in New Jersey at a much lower rate than the Medicaid Program in New Jersey paid to children’s hospitals in farther states, or without any payment. He says he often treats children who live directly across from the Delaware River in New Jersey. We offer several services not available in New Jersey, such as fetal surgery to correct spina bifida.

“There is no Medicaid [managed-care] Ahavia Glazer, senior director of health policy at Philadelphia Children’s Hospital, which serves 25,000 New Jersey children annually, said, “New Jersey plans complain that prices are too high. It’s leaking. “have [renowned, out-of-state] Children’s hospitals in their network of plans because it attracts sick children. It is illegal and immoral. “

New Jersey lawmakers are considering a bill requiring the state’s five Medicaid managed care plans to provide an appropriate pediatric care network within set distance limits.

Wardell Sanders, chairman of the New Jersey Association of Health Plans, said the bill would force plans to cover even routine pediatric care in Philadelphia and New York’s top children’s hospitals, unless price restrictions were added. He warned that he would raise Medicaid spending.

Other children’s hospitals across the country are also complaining about Medicaid’s barriers to treating children outside the state. Leaders of children’s hospitals in the Denver, Colorado region say they serve thousands of patients from six surrounding states, and doctors need to have individual liability insurance in each state. And each has a different policy regarding covering family travel and accommodation.

Annie Lee, Secretary-General of Colorado Children’s Medicaid Strategy and Community Healthcare, said: “We have charges from the state entirely, and we cannot consistently cover the cost of care.”

All of this can create hassle and anxiety for parents of highly ill children who are already facing significant stress and cost.

Vinessa Kirkwood, who lives in the suburbs of Indiana near Chicago, said she had to cancel her 20-month-old son Donte’s reservation at Riley Childrens in Indianapolis because she didn’t have accommodation. She also shares a car with her partner who needs it for work, and she balances Donte’s care with the needs of her other four children.

She wants Donte, who was born with cerebral palsy and severe digestive problems, to receive regular care with Ruri Children, who had surgery shortly after birth. So she’s watching carefully what happens to Senator Bohasek’s bill.

“I have those Lully doctors on the speed dial,” she said. “I hope to get back to them soon.

Increased Medicaid Managed Care for Adolescents Slightly Related to Preventive Care

(Kaiser Health News (KHN) is a national health policy news service. This is Henry J, an editorial independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.)

2021 Kaiser Health News. Distributed by Tribune Content Agency, LLC.

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Families with sick children in Medicaid want easier access to out-of-state hospitals

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