Three-year-old Elizabeth Zakutansky was born with a rare genetic disorder that causes multiple seizures. Her neurologist, a top expert in treating her disease, practices at Lurie Children’s Hospital in Chicago, less than an hour’s drive from the Zakutanskys’ home in Hobart, Indiana. Her parents want her to take full care of them there.
But Lurie wouldn’t keep treating Elizabeth because her insurer Indiana Medicaid pays nongovernmental providers much less than government agencies. This is true of most government Medicaid programs. Therefore, the Zakutanskys pay the Lurie neurologist out of pocket for consultations, and the doctor gives her local pediatrician detailed instructions for Elizabeth’s care.
However, when Elizabeth has uncontrolled seizures, she needs urgent intervention. Her parents are dragging their two teenagers out of school and the whole family drives a 2½ hour drive to the Riley Hospital for Children in Indianapolis, the only specialized pediatric facility in the state. If she needs to be admitted, the family sometimes has to leave her there to return to work and school.
Advertisement – Read below
“It’s horrible to leave your daughter and go home so far,” said Laura Zakutansky, Elizabeth’s mother. “You are not there to comfort her. A fit could kill them. How would you feel about it if you weren’t there? “
The provision of quality care in non-governmental children’s hospitals for children with complex medical needs has long bothered families, providers, and Medicaid programs. Choosing a non-government hospital can be a matter of convenience for patients and their families, and it can also mean ensuring state-of-the-art care as only a limited number of hospitals and doctors in the country have the skills and capabilities Experiences to best treat children with certain conditions.
Congress recognized the problem. Law passed two years ago allowing states to voluntarily set up a “health house” program that may make it easier for non-state providers to act as coordinating caregivers for children with complex conditions. Participating states would receive a temporary increase in federal funding from Medicaid to start the program. However, the Centers for Medicare & Medicaid Services stated that there is no “definitive timetable” for issuing guidance to states to establish this policy.
State Medicaid officials argue that their states cannot afford to send children to facilities outside of the state that charge higher payment rates. Children’s hospitals say all they want is prices close to what Medicaid pays to government providers. To make matters worse, most states have private Medicaid managed care plans that run their programs. These plans decide which providers patients can go to and how much they have to pay.
But Indiana lawmakers are paying attention to bills that would make Medicaid’s payments to children’s hospitals in neighboring states – Illinois, Kentucky, Michigan, and Ohio – nearly on par with state facilities. Currently, a Chicago facility may only receive a quarter of what an Indiana hospital would receive for the same benefits. Both the House and Senate have passed versions of the bill and are expected to settle the differences shortly and send them to the governor. The projected annual cost to the state is $ 300,000 to $ 950,000. To allay fears that it could cost more, the bill would have to be re-approved in two years.
“These families have to haul three hours in the snow to Indianapolis and if they try to reschedule an appointment they may have to wait another six weeks to get in,” said Republican Senator Mike Bohacek, a senior sponsor of the bill. He faced this situation with his own daughter, who was born in 2001 with Down syndrome in critical condition. “We can do better.”
Nearly 90% of children’s hospitals serve patients outside of the state and receive payments from an average of more than six states. This emerges from a report by the Federal Medicaid Commission last year. Two-thirds of the states pay non-state hospitals at a lower price than state facilities. Children with complex medical conditions make up 40% of Medicaid’s pediatric care spending.
Children’s hospitals say that approving Medicaid agencies and managed care plans to treat children out of state and negotiating payments often take more time than providing care. You have to make individual case agreements for each patient.
Dr. John Cunningham, chief physician at Comer Children’s Hospital in Chicago, said hospital staff recently removed a brain tumor from a child in northwest Indiana. However, Medicaid turned down a payment contract that would have allowed Comer to continue treating the patient and forced the family to go to Indianapolis for follow-up care.
“The transfer wasn’t because of the care. It was because of an artificial border called the state line, ”said Cunningham, whose hospital treated 275 children from northwest Indiana and hired a lobbyist to help drive the Indiana bill. “That’s a fundamental problem.”
But Medicaid officials say sending children to out-of-state facilities can be too costly and that interstate travel may not be the best for the family. “When a children’s hospital prides itself on being the best pediatric center for a variety of diseases, it knows that people will come and that it doesn’t have to negotiate,” said Matt Salo, executive director of the National Association of Medicaid Directors. “It’s ‘take it or leave it.’ That’s not fair.”
Some states and children’s hospitals have been able to reach broader agreements. For example, the Illinois Medicaid program has agreed to pay in-state tariffs for St. Louis Children’s Hospital for the care of children in the East St. Louis, Illinois area.
In contrast, Philadelphia Children’s Hospital officials say their facility often treats children across the Delaware River in New Jersey at much lower prices than the state’s Medicaid program in New Jersey Children’s hospital paid – or without being paid at all. It offers some services such as fetal surgery to correct spina bifida that are not available in New Jersey.
“None of the Medicaid (managed care) plans in New Jersey have ever complained that our rates are too high,” said Ahaviah Glaser, senior director of health policy for Children’s of Philadelphia, which cares for 25,000 children in New Jersey annually. “But behind closed doors, they say it is too expensive to have a (reputable, non-state) children’s hospital in the network of their plan because it attracts sick children. It’s illegal and immoral. “
New Jersey legislators are considering billing to require the state’s five Medicaid managed care plans to provide adequate networks of pediatric care within set distances.
Wardell Sanders, president of the New Jersey Association of Health Plans, warned that if no tariff restrictions were added, the bill would increase state Medicaid spending by forcing plans to include even routine pediatric care in top-tier children’s hospitals in Philadelphia and New York to cover.
Other children’s hospitals across the country are also complaining about Medicaid barriers to treating children outside of the state. Executives at Colorado Children’s Hospital in Denver, which serves thousands of patients from six surrounding states, say their doctors must get separate liability insurance policies in each state. And everyone has a different policy for family travel and accommodation.
“Once we start seeing a patient, we run out of bargaining power,” said Annie Lee, Medicaid chief executive officer for strategy and health for the Colorado Children’s Community. “We have tariffs from states that apply across the board, and we cannot consistently cover the costs of care.”
All of this can cause anger and anxiety for parents of very sick children who are already facing tremendous stress and expense.
Vinessa Kirkwood, who lives in suburban Indiana near Chicago, said she had to cancel appointments at Riley Children’s in Indianapolis for her 20-month-old son Donte because she couldn’t afford accommodation. She also shares a car with her partner who needs it for work, and she juggles Donte’s care with the needs of her four other children.
She wants Donte, who was born with cerebral palsy and severe digestive problems, to receive regular care at Lurie Children’s, where he had an operation shortly after he was born. So she’s watching closely what happens to Sen. Bohacek’s bill.
“I have these Lurie doctors on speed dial,” she said. “I hope to return to you soon.”
KHN (Kaiser Health News) is a national newsroom that produces extensive journalism on health issues. Alongside Policy Analysis and Polling, KHN is one of the three most important operational programs of the KFF (Kaiser Family Foundation). KFF is a foundation that provides health information to the nation.
Comments are closed.