'Humiliating and incredibly depressing:' Patients, providers share woes of MCOs

Dec. 20--WATERLOO -- There were six Cedar Valley legislators on stage at the Van G. Miller Adult Learning Center on Thursday night, but Rep. Timi Brown-Powers said they would not be talking much.

"The whole focus for tonight is for these guys to hear what you're saying," Brown-Powers said as she opened up the Round Table on Health Care.

A couple of dozen people in the audience, mostly health-care providers and patients using the privately managed Iowa Medicaid system signed into law by then-Gov. Terry Branstad in 2016, had different stories that all added up to one main issue with the state's three managed-care organizations, or MCOs:

"Simply put, the system as it is now is not just underserving people with disabilities like myself -- it's ludicrous," said Zach Mecham of Pleasantville.

Mecham, a graduate of Drake University who said he used to hold multiple jobs as well as volunteer in his community, said he's unable to do much of what he used to because his provider won't approve the same standard of care as before.

"There are tons of people like me who would be doing way more, except for the system," he said.

That was true for Tucker Cassidy of Waterloo, who said before the Medicaid transition he "enjoyed a comfortable life." But at one point since the transition, a lack authorization for care meant he was "stuck" in a nursing home for six months, with the state paying "triple" what they would have otherwise paid for a home health aide.

"It was completely awful," Cassidy said, noting sometimes the home would only shower him twice per week. "I wasn't able to work. I was paying the mortgage on a home I wasn't even living in. It was humiliating and incredibly depressing."

Elaine Gartelos of Waterloo, disabled her entire life due to a neuromuscular disorder, also has a college degree and has worked and found joy in several hobbies. But when Iowa Medicaid transitioned, she said, her providers weren't getting reimbursed on time or at all. She sometimes spends most of her day just lying in bed because her MCO has cut her hours to the bone.

"Right now my independence is a thing of the past," Gartelos said. "Since the privatization of Medicaid, this is happening to thousands of people."

Ami Rosen of Cedar Falls said she's had to fight every step of the way with her MCO just to keep her overnight services, explaining her private medical history over and over. "No other population is made to share their bowel movements to anybody who may ask me," Rosen said. "I have a master's degree, I own my own home, I have a daughter. ... I want to be looked at as Ami, not Ami in a wheelchair."

Providers also shared their fears about their small businesses going under.

Jake Schaefer, a licensed mental health counselor with Cedar Valley Counseling Services in Cedar Falls, said he's had issues of getting his practitioners credentialed and getting the three companies -- Amerigroup, United Healthcare and Iowa Total Care -- to pay for services.

Vince Wolrab, who owns wheelchair company JVA Mobility in Waterloo and Cedar Rapids, said he's had to fight the MCOs, who won't even cover batteries for the powered wheelchairs his customers rely on. "Once again, small companies are footing the bill," he said. "It comes to a point where they're going to shut our doors down, or cut off all our patients. That's literally the point we're getting to."

At the end, the legislators denounced majority Republicans in the Legislature for voting for privatization, and keeping bills that might fix the problems from getting to the floor for a vote.

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