WATERLOO — Hans Froyum Roise is a lot like most 6-year-olds. He plays with his siblings. He just completed kindergarten. And he can fall asleep just about anytime, anywhere.
But if he does that last one without a ventilator, he could die.
Hans has a rare condition called congenital central hypoventilation syndrome, or CCHS, which means his nervous system doesn’t perform some functions most do automatically, like breathing. He travels everywhere with a ventilator, and wears it each night since breathing is a particular worry when he sleeps.
Because Hans’ condition makes him “medically fragile,” parents Adam and Carissa Froyum Roise qualify for some Medicaid benefits as a secondary insurance. They worry the proposed changes to health care at the federal level could have significant impact on their coverage.
“It’s very challenging when you have a child with a life-threatening or a very serious medical condition when other layers of uncertainty are added to your life,” said Carissa Froyum Roise. “Because you depend on, in our case, nursing and medical equipment to keep our child alive, and it’s up in the air.
“We don’t know what will happen. We don’t know if those services will be available, and those are the services that allow sick kids to live in their homes versus being in an institution.”
Republicans have been promising to “repeal and replace Obamacare” — the federal Affordable Care Act — for seven years. But because its namesake was president until this year, efforts had failed.
Few knew how “repeal and replace” would look until this spring. The U.S. House passed a bill May 4 and the Senate unveiled a draft bill Thursday.
A review of the House proposal by the nonpartisan Congressional Budget Office estimates the Medicaid program would be cut by $834 billion over the next 10 years. The review of the Senate proposal could come out this week.
Headlines about the Senate proposal described “deep cuts” to the Medicaid program that helps keep Hans healthy and at home. About 23 percent of Medicaid’s enrollees are elderly or have disabilities, but they use about 63 percent of expenditures.
AARP Iowa found in a survey released last week 79 percent of Iowa voters 50 and older oppose cutting Medicaid. A national study by Lutheran Services of America found 70 percent agree the program is good for the country, and its health care for those with disabilities the most popular aspect, at 85 percent support.
While some lawmakers — including U.S. Sen. Charles Grassley, R-Iowa — have said the bill will aim to protect Medicaid recipients who have disabilities, health experts say those protections won’t matter much if dollars are not there to support programs.
The Froyum Roises acknowledge they would fare better under the Republican plan to cap Medicaid spending. Their main insurance would still pay for many of Hans’ needs, like his overnight nurse.
But many services he gets through Medicaid — like a personal school nurse and air conditioning in the summer that makes it safer to go to class. Such things help him more fully participate in the community.
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If those go away, one of Hans’ parents might have to quit work. Adam is a family physician, and Carissa is a professor.
“Having in-home nursing is much, much, much less expensive than repeated trips to the hospital, and for us, that’s what nursing does, it keeps our kid out of the hospital,” Carissa Froyum Roise said.
Adam Froyum Roise said Hans has been to the emergency room just once, and has only been admitted to the hospital for planned visits. His parents say Hans has a milder case of the condition and is generally healthy.
But when he does fall ill, Medicaid allows his school nurse to stay with him at home so his parents can work. They sometimes need to use sick time to care for their other children, Isak, 8, and Linnea, 4.
Because the bill has not yet been enacted, no one knows how many fears families will realize.
The current bill aims to cap the Medicaid program per enrollee in each state, with a yet-to-be-determined rate of inflation. Grassley said during a call with Iowa reporters last week the details are still being worked out, but current Medicaid funding to states is not “fiscally responsible.”
There’s concern the money will not keep up with costs. States would be left to spend more or — more likely — reduce benefits.
While some Medicaid benefits are mandated by the federal government, the state has options to do more. Many benefits the Froyum Roises depend on are considered optional.
“Given that the state has made what I would consider some pretty bad decisions about Medicaid within the last couple years, I don’t feel like they have been great stewards of our program through the privatization,” Carissa Froyum Roise said. “When money is going to companies instead of caring for kids so they can stay in their homes, that’s a problem.”
Carissa notes her family has had fewer impacts than others over the state’s Medicaid privatization. But they witnessed firsthand the frustration when they recently went through a recertification process. Hans was initially denied, despite having a incurable and ongoing medical condition.
The Froyum Roises say the benefits Hans gets have a measurable impact on his health and their quality of life.
The Froyum Roises have been writing letters to their lawmakers and attended the town hall U.S. Rep. Rod Blum, R-1st District, held in Cedar Falls shortly after the American Health Care Act passed the U.S. House.
But so far they said they haven’t received any clarity about what the future holds for their family and others like them.
They keep up on latest news through the professional organizations Adam is involved in and through a network of CCHS families. Still, they feel like they arein the dark because of the secrecy that shrouded the Senate bill until Thursday.
But they will remain strong advocates for the program that has done so much for them.
“We are extremely blessed. His condition is manageable because we have Medicaid. It would be utterly and entirely overwhelming (without it), and it breaks families apart,” Carissa Froyum Roise said. “Our family is intact. We have jobs. Hans has a wonderful life. His siblings get to have a life, because we have excellent medical care.”