Brenda Hummel's 7-year-old daughter Andrea was born with severe epilepsy. Like many children with significant diseases or disabilities, she has health insurance through Medicaid. Hummel navigated Iowa's Medicaid resources for years to find just the right doctors and care for her daughter. But now Iowa's governor, Republican Terry Branstad, is moving full speed ahead with a plan to put private companies in charge of managing Medicaid's services, and that has Hummel worried.
Everywhere in the Hummel household, there are signs of just how much care Andrea needs. Her bedroom, for instance, looks like a typical kid's room — stuffed animals, a frog light that shines images on the ceiling, and a butterfly mobile. But the bed stands out – the head of the bed goes up and down so Andrea can have her head elevated when she sleeps.
"When she was throwing up all the time when she was in a regular bed, I hardly got any sleep," Hummel explains, "because if I heard her coughing, I knew she was choking."
Andrea has this bed thanks to Medicaid — as well as her wheelchair and nurses, like Nate Lair who's been with the family for years. When Hummel gets home from work, Lair says, Andrea's personality changes.
"That's when she turns on the diva attitude," he says, laughing.
That diva attitude is significant progress. For years, Hummel says, her daughter showed very little personality. Seizures interrupted her development.
Now Andrea is able to go to school and do normal activities. But her mom worries that having a private business in charge of Medicaid will jeopardize the level of care Andrea gets.
"She hasn't been in the hospital for 2 1/2 years, I think," says Hummel. "So when they look at that, they may think, '[Her services] are not medically necessary. She's doing great and doesn't need these services that are costing money.' But, in my eyes, she can fall back to having seizures any time. We're not out of the woods at all."
Maybe it'll be OK, Hummel says, but she just doesn't know enough.
Medicaid serves a large population in Iowa. The state expanded Medicaid under the Affordable Care Act, and is now open to not only its traditional population — the poor and disabled — but also to adults who earn as much as about $16,000 a year for a single person, and as much as $32,000 for a family of four.
Amy McCoy, who is with Iowa's Department of Human Services, says patients will continue to receive the same care under the new system, and the changes will save money and streamline the services.
"Some people might have five doctors," McCoy says. "Through this care-coordination effort, they can make sure everybody's on the same page with their treatment."
McCoy says having private insurers manage Medicaid is nothing new.
"Thirty-nine states are using some kind of managed care," she says. "So other people have done this. We have models to look after, and we have companies who have experience."
"You know, when I was a kid growing up my mother would say, 'If everybody jumps off the bridge, are you going to, too?' " Jochum says. "Of course not! The point is that just because everyone else is doing it doesn't make it better."
Families like Brenda Hummel's have a natural ally in Jochum; she, too, has a daughter with special needs who has been on Medicaid all of her life. Still, even with Jochum's opposition to the changes in Medicaid, the process in Iowa is moving forward. Gov. Branstad did not need legislative approval when he announced the switch to managed care in January.
In response, some lawmakers, including Jochum, insisted on a committee to oversee the transition and to make sure that consumers are treated fairly.
"There is no way," Jochum says, "you can put that many people into a system all at once, with various degrees of disabilities and need, and think anyone can manage that and manage it well."
Eleven companies have submitted bids to manage most of the $4 billion program, and Iowa plans to announce later this month which insurers will win the bid.
Brad Wright studies health policy at the University of Iowa. He says a lot of states have experimented with this idea, but on a smaller scale.
"They've not ... done what Iowa is proposing to do — or at least most have not done this — which is to put everyone into it," Wright says.
The only hurdle that stands in the way of approval, he says, is an OK from the federal government.
"If that happens," Wright says, "starting in January, it's full steam ahead."
This story is part of NPR's reporting partnership with local member stations and Kaiser Health News.