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Providers for Iowans with autism are concerned their education opportunities will be even more limited

Drake University's Old Main building
Catherine Wheeler
Drake University's Old Main building in Des Moines.

Fifteen years ago, Evelyn Horton said she might have been only one of 14 board certified behavior analysts in Iowa. Now, she’s one of fewer than 200 who have been licensed in the state to date.

Board certified behavior analysts, or BCBAs, are people who work in applied behavior analysis, or ABA, a type of therapy used that can be used help people with autism address disruptive or challenging behaviors, things like aggression or self-injury.

Horton, who is also the vice president of children's services at Balance Autism, said ABA can also address a wide range of challenges a person with autism may have and it can help build new skills at the same time.

"It is really a combination of things that should lead to an increased ability to have choices in life and therefore in increasing the quality of life," she said.

Horton said there aren't enough BCBAs in Iowa to fill the need, a problem she credits to not having enough educational opportunities in the state. That’s why Horton was grateful when Drake University started a master’s degree to train more BCBAs five years ago.

"Being able to hire people who are local Iowans, who want to stay in Iowa, rather than trying to recruit behavior analysts from other states, it's been a real plus for us," she said.

The goal, according to a Drake press release announcing the program, was to meet a "critical workforce need" to train more people for this line of work. The university said the program was a part of the state's educational officials' plan to grow the number of BCBAs in Iowa.

But now, advocates are concerned Drake may be closing its program and that it could hurt services across the state.

"I was notified towards the end of last year that a proposal was going to be made to the Board of Trustees to close the Applied Behavior Analysis master's program due to low enrollment," Maria Valdovinos, a Drake professor and the director of the university's ABA master's program, said.

A spokesman for Drake said points of discussion for the Board of Trustees and its agenda are confidential, and they couldn’t share any details. The next board meeting is set for this Friday.

Valdovinos said she’s worried about what downstream effects cutting off a source of providers could do to the already long waitlists out there for children.

"I was an advocate in starting this program, because I see what need there is in the state of Iowa. I see children who are on waiting lists for months and months and losing time to get that early intervention," she said.

According to the Centers for Disease Control and Prevention, 1 in 44 children in the U.S. have been identified with autism spectrum disorder.

There’s a shortage of ABA services in the state, especially in rural areas, said Matthew O'Brien, an assistant professor of pediatrics at the University of Iowa Stead Family Children's Hospital.

I think if you consider just where the BCBA is in Iowa reside, over three quarters of the counties in Iowa do not have a BCBA or service provider
Matthew O'Brien, an assistant professor of pediatrics at University of Iowa Stead Family Children's Hospital

O'Brien and Horton are also a members of the Iowa Autism Council, a governor-appointed group tasked with making recommendations about autism in Iowa to lawmakers.

Following a 2017 law that requires insurance companies to cover ABA services, O'Brien said more providers have moved into the state.

"Many graduates of the Drake program have been employed by those service agencies. So I would suspect that's been a huge help to decreasing some of the wait times and increasing the number of service providers. It's still just not enough," he said.

Waitlists for autism diagnosis can be around a year, and wait times for ABA therapy can also be long, depending where in the state you’re located. But advocates and providers say there isn’t time to waste.

Nathan Noble, the medical director of the UnityPoint Health Blank Children’s Developmental Center, said while there’s a big emphasis on getting kids diagnosed as soon as possible, there isn’t the same rush on getting them into ABA therapy because there just isn't enough to serve everyone.

"Of the patients I see—there’s thousands of them—I would estimate that maybe 10 percent receive ABA services, either through our clinic or in the community," Noble said.

State effort

The state has been aware of its lack of access to ABA services. One step in tackling that was the 2017 law, opening up the financial barrier that many families were facing in getting ABA covered.

The state also funds the Autism Support Program, which has been around since 2014. It has state funding for kids with autism who don't have access through Medicaid or a private insurer. According to officials who run the program, it's served just over 70 children since it was created.

To support growing a source of providers, the Iowa Department of Education provided grant support to Drake to get its program up and running, said Brad Niebling, the department’s bureau chief for learner strategies and support.

"The contract was really a financial safety net for that program to get up and going," he said. "So they need to hire faculty and instructors, they need to recruit, retain and get an increasing number of students in the program so that it can be self sustaining."

The contract is for five years, and it runs out this year. A spokesperson for the education department said Drake's program didn’t meet its financial independence goals or the the department’s goals related to putting more BCBAs in state schools or education agencies.

Another way the state has tried to support growing more BCBAs in state is through atuition grant program. It can cover half tuition, and in turn, grads, once certified, have to work in Iowa for two years full-time and do some supervision work. Of the 55 students who have participated so far, 23 of them went to or are in school at Drake, the most of any school.

Evelyn Horton with Balance Autism, which provides services to children and adults with autism throughout the state, said what has made the Drake ABA program particularly valuable to her is that it connects students to different kinds of providers for their practicum experience, which is required to become a BCBA.

"When we get a Drake student, they possibly have had part of their experience working with adults, they possibly have had some experience in a skill acquisition similar to what we do. They may have worked with a pediatrician here in town on doing the functional assessment of behavior, so become pretty darn well rounded for somebody who just got their certification," Horton said.

An uncertain future

Horton said if the program goes away, she'll have to begin recruiting more heavily from out of state and that drains resources.

"We pay a large premium to professional recruiters to find people for us. And then you're going to be out whatever you paid for the recruiter fee, plus whatever you pay for relocation or sign on. And all of those come out of the same kitty that would be used to actually increase wages," she said.

The potential closure of Drake’s program could have far larger implications for the state, beyond this one situation, Noble said.

The dissolution of an incredibly valuable service for an incredibly vulnerable population, in a state that absolutely desperately needs the service, sends a message. And the message is that of precedent. If we planted it, and it died, or it was let go or it transitioned away, or it was untended to, what's the likelihood we're going to plant again?
Nathan Noble, medical director at UnityPoint Health Blank Children's Developmental Center

There are two places to get an ABA certificate in Iowa. One is at the University of Iowa. It’s new, and requires students to have a masters or doctorate in another subject, like special education, which can be a less direct route to becoming a BCBA. The other is an online program at Dordt University.

The state is already reckoning with its lack of access to community-based care for people with intellectual and developmental disabilities following a report from the U.S. Department of Justice regarding the Glenwood and Woodward facilities for people with severe disabilities. It specifically calls out a shortage of ABA services throughout Iowa.

In the report, the feds say the state has failed to address these needs and now must figure out sustainable solutions.

Editor's note: This story was updated at 8:45 p.m. on Apr. 28 to include Dordt University in Sioux Center among the schools that provide the coursework to get an certificate in ABA.

Catherine Wheeler was Iowa Public Radio's All Things Considered host and a reporter from 2021 to 2023.