What happened to Aaron?: Autistic boy’s death sheds light on major issues within state
Six year old’s death indicates Kansas ill-equipped to care for autistic children
WICHITA, Kan. (KWCH) - In part one of the Factfinder 12 investigation into the death of Aaron Carter, a six-year-old autistic boy who died within two months of being adopted by a Wichita couple, we heard about the needs of autistic children. Particularly those in the foster care system. We also learned about the struggle in the state of Kansas to make sure those needs are met. In part two, we hear from others who tell us what needs to be done to make things better for autistic children in the state and how it can be accomplished.
Aaron Carter came into Jamie and Tina Miller’s home as a foster child in 2018. It took time to discover he was autistic, and it took every bit of the three years he spent with the couple to bring him from a child who could not communicate and didn’t respond to anyone or anything around him, to a boy who liked to dance, help with chores and ride horses.
When the Millers decided they wanted to adopt Aaron, they soon found out that the cost to provide him the therapy and care he required would be overwhelming once he was no longer a ward of the state.
“We couldn’t pay for it out of our own pocket. We financially couldn’t do it, but by then we’d had him long enough and he had made such huge strides. It was like tearing you apart,” Tina Miller said.
A young, recently married Wichita couple said they wanted to adopt Aaron. The couple met him, began the adoption process and eventually became acquainted with the Millers.
“We ate supper with them, and we just told them everything that had happened, that could happen and that needed to happen to keep him safe and happy,” Jamie Miller said.
Aaron went to live with his prospective new parents in December 2020. Less than two months later, the boy who’d made such huge strides, was dead.
The official account of Aaron’s death reads that he had a tantrum while taking a bath and hit his head on the tub. Tantrums were something the Millers had cautioned Aaron’s new parents about.
“If he got upset he would yell and scream or throw a tantrum, but that’s the only way he could voice any of his feelings or opinion or anything was by throwing a tantrum,” Jamie explained.
Struggling to implement Applied Behavior Analysis therapy
Sean Swindler with the Kansas Center for Autism Research and Training explains those tantrums in a way easy to understand for those unfamiliar with autistic children like Aaron.
“When I put $1 in the candy machine, and the candy bar’s dangling and just won’t come down, I know I want it. What do I do? I shake the candy machine,” Swindler said. “Kids with autism are the same way. If I can’t communicate what I want, what I need, I’m going to figure out a way to tell you.”
Aaron was figuring that out, with fewer tantrums, thanks to ABA therapy.
“ABA therapy is applied behavior analysis,” Swindler explained. “Therapy that’s been shown, through research, to help kids with autism improve. Especially if it’s delivered before the age of six to eight years old.”
The Millers say Aaron received ABA therapy four to five times a week. Once he moved to Wichita, that therapy stopped, ending both his routine and stifling his path to communication.
“A lot of children with autism, having that routine is incredibly important,” Swindler said. “By stopping that therapy, you are reducing that child’s ability to communicate. You’re reducing that child’s ability to kind of learn and grow and giving him those tools.”
Those tools that, at best, are difficult to find in Kansas, and they’re often out of reach of those who need them most.
“Mental health isn’t treated the same as physical health by a lot of our health care system. Take all those in your mind magnify by ten when you put autism in the middle of that,” Swindler said.
In 2014, Kansas passed a law saying private insurers must cover ABA therapy for autistic children. Experts say that’s not as clear cut for children on Medicaid. Medicaid reimbursements can be slow and don’t necessarily pay enough for the required therapy. Consequently, questions of whether ABA therapists will be paid enough, or at all, prompt many to practice in other states.
“I think a lot of states with large rural populations are having a brain drain and have trouble keeping people at home. For people that practice a particular field like ABA therapy. The things that do keep people at home are the ability to actually bill for services and serve your population for one,” Swindler said.
Few qualified therapists practicing in Kansas means those seeking the therapy can be left waiting.
“Even if you have the best insurance and the best circumstance, you might be waiting quite a while to get that autism evaluation. When you add in a child in foster care who might be going between different foster parents or doesn’t have that permanent oversight of their medical history, kids do get missed, or kids get a diagnosis but that doesn’t catch back up to them. All sorts of things happen there,” Swindler said.
What happened in Aaron Carter’s case?
He died waiting to be seen by a new ABA therapist. In Kansas, the autism waiver program provides support and training to parents of autistic children. Currently, the program is funded for just 65 children with 386 on the waiting list.
So, how do we do better so ABA therapists come to Kansas, stay in Kansas and children like Aaron get the chance they deserve in Kansas?
“The way to make it better is you have to have a concerted effort among all the interested parties to strategically attack the problem,” Swindler answered.
ABA therapy is the most widely used therapy for autism spectrum disorder. The University of Kansas was one of the first schools to begin developing the therapy in the 60s and 70s. It continues to train world-class ABA therapists. Many of whom then go to other states to practice. The “interested parties” Sean Swindler spoke of are state lawmakers, who you can contact to say you want to see changes that will help keep those therapists here.
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