When we first met the Bruhn family, Colin was in kindergarten. His mom, Kelly, was frustrated by the shortage of special education resources. Her frustration has only grown, extending into another area affecting kids with an autism diagnosis.

“When you get that diagnosis you’re so overwhelmed and there’s a laundry list of items to tackle,” Kelly explained. “And the very first item on that list is that you need to get on the disability waiver list because it can take years.”

She’s talking about Medicaid waivers, which are supposed to ‘waive’ income requirements so kids with significant disabilities are covered. Kelly has been waiting for a waiver slot for more than four years. She reached out the Iowa Department of Human Services about it and received a form letter.

Elizabeth Matney is Iowa’s Medicaid director. She explains that there is no autism-specific waiver in Iowa. Families like the Bruhns apply for the children’s mental health waiver, the health and disability waiver, and the intellectual disability waiver.

“All of those waivers have waitlists that can range between one year and four years right now,” Matney said. “It’s too long.”

As the State Director of Mental Health & Disability Service Marissa Eyanson knows going from waitlist to waiver is life changing.

“What the waiver means is access to an enhanced array of services,” she said. “So for children specifically we want to connect them with the resources they need so that, to the extent possible, they can live their most productive and high quality life. They might need lifelong supports that we can build in for someone that will help them stay at home. It’s also things like skill building, help securing a job, getting their own place to live.”

Those are all services that are out of reach for the thousands of Iowans on waiver waitlists. The Bruhns have private insurance and can afford the co-pays, but families without those resources aren’t so lucky. It means they go without things like speech, physical and, occupational therapy that can help improve their child’s quality of life.

“We have to operate our program within the budget that’s appropriated to us by the Governor’s office and the legislature,” said Matney.

The investment from the state has steadily increased over the past five years – to more than 7 billion dollars in the last fiscal year. And last year DHS received more than 56 million dollars from the American Rescue Plan. Two million of that was used to study the current system.

“Well it wouldn’t have taken much study to come with parents about what life is like!” said Kelly. “It is not right. We do not feel supported as parents”

The result of that study is a report that recommends streamlining the waiver process, including developing a single waiting list. But when it comes to implementing changes, there’s another apparent waitlist. A graphic on the DHS website shows that ‘improve waitlist policy and procedure’ is in its ‘exploration’ phase, with no plans to move it past that.

In the meantime, Kelly has no idea how long Colin may be waiting.  

“It could be many more months, another year, two years. We’re just trying to navigate this world on our own and it’s like a completely different universe,” she said.

She also wants people to consider our state’s priorities. 

“If we cannot look at the most vulnerable in our community and think we need to do all we can to support them, then who are we? What are we doing?! We have an obligation as leaders to serve these community members and help them. Help them become all that they can be, and our community will be better for it.”