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Disabled Iowans Anxiously Await Medicaid Transition

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Natalie Krebs/IPR
Ankeny residents Rick and Dawn Durham help their son, Ben, put on a shirt. Ben, 40, has severe autism and has been on Medicaid since he was three years old.

This month about 420,000 Iowans on Medicaid are preparing to transition to a new managed care organization when UnitedHealthcare leaves the state on June 30. This includes nearly 40,000 special Medicaid patients that require long term-services and supports and their families. Though they make up just 6 percent of Medicaid recipients, they require a much higher level of specialized care than the general population, and this upcoming transition has left many of these people feeling anxious.

It took Urbandale resident Sue Mersereau decades to find a living situation that worked for her 51-year-old son Chris, who has severe autism.

Chris has been on Medicaid since he was 9. Mersereau said he’s lived in various group homes, where he was prone to frequent violent outbursts.

"He had padded walls, and they put plexiglass on the window," she said. "And there was nothing else in his room because his behaviors nobody understood."

Then four years ago, Chris got an intellectual disability waiver to be placed in community care under the state-managed Medicaid system. Mersereau said he’s doing much better living in an apartment with healthcare aids.

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Natalie Krebs/IPR

"When he was in a group home, it was happening once an hour. Now that he lives alone and has staff that understand him, he may go a few days without one at all," she said.

But Mersereau said now she’s worried it’s not going to stay this way.  Under UnitedHealthcare, she said she struggled to find a provider who could staff and pay for Chris’ in-home care.

And now she said she's having trouble choosing between Amerigroup and Iowa Total Care -- the two remaining options.  

"It’s like between the devil and the deep blue sea. I’m sorry," she said.

Mersereau said her ultimate fear is that Chris could be sent back to a group home under the new MCO [managed care organization] when it does its own evaluation of her son’s medical needs.

"The real issue with most everyone that moves is: What are they going to do to us? What are they going to cut? We all know this, and if we don’t, we’re blind," she said.  

Mersereau’s not the only parent with unanswered questions.  

Ankeny resident Rick Durham’s 40-year-old son, Ben, is also severely autistic. He’s been assigned to start with Iowa Total Care on July 1.

"The real issue with most everyone that moves is: What are they going to do to us? What are they going to cut? We all know this, and if we don’t, we’re blind." - Sue Mersereau

“They don’t know anything," Durham said. "And they said we’ll let you know or you can get on our website and you can check every day and check what doctors or what clinics are on our list. But they don’t know anything. They could give me no solid information.”

In a statement, Iowa Total Care says its working closely with providers to join its network. But the first deadline to change MCOs is this week, and the company has just finalized contracts with some of the state’s largest healthcare providers. 

Bill Stumpf of Dubuque says this has left some Iowans like his 29-year-old son Kyle without much choice.

When Kyle, who has Down syndrome, was reassigned to Iowa Total Care from Amerigroup in March, Stumpf says he immediately switched him back.

"Of course, Iowa Total Care was not an option for us because no one had signed on yet so why would I pick that," Stumpf said.

The Department of Human Services did not respond to requests for an interview.

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Natalie Krebs/IPR

But during a press conference last month, state Medicaid Director Mike Randol said Iowa Total Care was making “good progress” signing up providers. And he said the agency will be working with recipients to keep their case managers, which has been another major concern.

"So for example if the individuals had their case manager for the same period of time that case manager is now working for Iowa Total Care, AmeriGroup we’re working to make sure that continuity of care will continue as well," Randol said.

Medicaid recipients have until September to switch MCOs for any reason.

But this open choice period has done little to calm parents like Sue Mersereau who said she’s spent years trying to navigate the managed care system.

"There was a point in time in the middle of this where I would be in my office upstairs day and night," Mersereau said. "I’m 70 years old. I shouldn’t have to worry about where my son’s going to be if something happens to me."

The first deadline to switch MCOs is June 18 for a July 1 state date. The next deadline is July 18 for an August 1 start date.

Natalie Krebs is IPR's health reporter.  Funding for her work is provided by the Mid-Iowa Health Foundation.