Cedar Rapids family watching redesign of program for people with disabilities

Iowa HHS making changes to Medicaid services
Published: Nov. 20, 2023 at 11:00 PM CST
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CEDAR RAPIDS, Iowa (KCRG) - A Cedar Rapids family uses Medicaid waivers to help care for their daughter with severe disabilities. They said these services changed their lives, but added it’s also clear the system needs to change.

The Iowa Department of Health and Human Services is redesigning what’s called the Home- and Community-Based Services Waiver Program. This program provides things like adult day care and case management for those with disabilities who in previous generations would have been institutionalized.

Natalie Clouse is the mother of Gwendolyn, a girl who relies on these services. Gwendolyn has Zellweger Spectrum Disorder.

“She’s one of two kiddos in the state of Iowa who have the disorder,” said Clouse. “It impacts all of her body systems. So she’s blind. She’s deaf when she doesn’t have her cochlear implants in. She’s developmentally delayed and nonverbal. She also has stage four liver disease.”

Clouse said she had never even heard of the Medicaid waiver program until a friend told her about it when her daughter was born.

“At first I was like, we don’t need services. She’s a baby. And we have insurance. What’s the point? And she said, ‘Well, there’s a really long waitlist and you might need services someday.’”

And the wait was long.

Clouse applied for two waivers back in February 2019. She was on the waitlist for one of them until May 2023 and the other one until about three weeks ago.

“When we filled it out, I remember I was really, really upset because they said there’s a really, really long waitlist. And I was crying because I’m like, ‘Well, she’s not supposed to live a year. So we’re not— we’re never going to get off the waitlist,’” said Clouse.

Clouse is not alone. According to Elizabeth Matney, the Director of Iowa Medicaid, there are currently 14,000 people in Iowa on a waitlist for care.

For the Clouse family, finally getting off the wait list has been life changing.

“We were able to use get medical daycare for Gwendolyn because she can’t go to a normal daycare,” said Clouse. She also said waivers have covered medical supplies they used to pay for out of pocket.

Officials have acknowledged the long waits and other problems, such as complaints the available care doesn’t line up with what people actually need. Officials are sharing plans to redesign the waiver program by reducing the number of hoops people have to jump through and shrinking the number of waiver categories.

Clouse worries the redesign still won’t get at what she sees as the number one problem.

“I just don’t know how many kids out there never get the chance to have any services because they die while they’re waiting on a waitlist,” she said.

Gwendolyn is getting services, but even so, life is still challenging for this family.

“The frustrating thing is sometimes you just want to be a mom. And you don’t want to be an advocate and nurse and all those other things,” said Clouse.

Clouse added that, despite the frustration, her life with her daughter is “joy-filled.”

“We know it’s just a gift. It’s just a blessing,” said Clouse. “We know every day is a blessing. And so in that regard, we’re pretty lucky.”

There are three more listening sessions for those who want to learn more about the redesign or give feedback on these programs. They’re all virtual meetings:

  • Tuesday 11/28, noon-1:30 PM
  • Thursday 11/30, 4-5:30 PM (Spanish language event/Español)
  • Thursday 12/7, 4-5 PM (Medicaid Town Hall)

Links to join the sessions will be released on this page the day of the session.