Three-year-old Elizabeth Zakutansky was born with a rare genetic condition that causes multiple seizures. Her neurologist, a top expert on treating her condition, practices at Lurie Children’s Hospital of Chicago, less than an hour’s drive from the Zakutanskys’ home in Hobart, Indiana. Her parents would like her to get all her care there.

But Lurie wouldn’t continue to treat Elizabeth, because her insurer, Indiana Medicaid, pays out-of-state providers much less than in-state facilities. That’s true for most state Medicaid programs. So the Zakutanskys pay the Lurie neurologist out-of-pocket for consultations, and the doctor gives detailed instructions for Elizabeth’s care to their local pediatrician.

When Elizabeth suffers uncontrolled seizures, however, she needs quick interventions. Her parents have to pull their two teenagers out of school and the whole family drives 2½ hours to Riley Hospital for Children in Indianapolis, the state’s only specialized pediatric facility. If she has to be admitted, the family sometimes must leave her there to return to their jobs and school.

“It’s terrible to leave your daughter and drive home so far away,” said Laura Zakutansky, Elizabeth’s mother. “You aren’t there to comfort her. One seizure could kill her. How would you feel about that if you weren’t there?”