Bridging the Gap: Grant to Expand Coaching Availability to Serve Children with Autism
Two-year-old Baylee Shriner plays with toys like other children her age now, but that wasn’t the case several months ago. Baylee, who has autism spectrum disorder, had trouble interacting with the world around her and could not communicate with her mother, Linzi Shriner, of Tonganoxie, Kan.
Like many parents encountering an autism diagnosis in their child, Linzi learned there were several hurdles to overcome to get the kind of early interventions that children diagnosed with autism need. Applied behavioral support therapy can be needed as much as 40 hours per week. Therapists can be difficult to find, insurance may not cover the costs, and if one can afford private services outside of insurance, that can cost between $40,000 - $60,000 per year.
Linzi found assistance through a University of Kansas program that serves as a bridge between an autism diagnosis and the start of behavioral therapy. Known as OASIS, or the Online and Applied System for Intervention Skills, it is a part of the Kansas Center for Autism Research and Training and based at KU Medical Center. The program recently received a $1 million grant to expand.
Through OASIS, clinicians work with children and their families to focus on skills such as social engagement, receptive communication and following directions. The courses begin with online training modules and a review of recurring challenging behaviors. From there, the families and clinicians work on introducing new skills in a series of coaching sessions. Parents apply the skills learned from the modules and receive real-time feedback from the clinician either through face-to-face or telehealth coaching sessions (KU sessions are now conducted via video, phone and text during the coronavirus pandemic).
Linzi met with a clinician in the OASIS program for an hour every week to practice techniques with Baylee.
“As soon as we were ready to start OASIS, they were ready for us and it was an affordable way to do this type of program,” Linzi said. “I ended up taking time off work to do this with my daughter for three months.”
OASIS began about 15 years ago at the Kansas City, Kansas-based Juniper Gardens Children’s Project, a part of the Life Span Institute. Federal funding then and over the intervening years helped researchers develop and test the online parent and clinician training modules, and then later helped them develop and test ways to train coaches.
The newest federal grant from the National Institute on Disability, Independent Living, and Rehabilitation Research for the program will fund a five-year project to develop the infrastructure to train more coaches. Those coaches will learn how to train others – a train-the-trainer model – to effectively use the OASIS techniques to teach parents to improve a child's level of independence and overall well-being.
“The parent training program is great, but if the only place people or families can directly access services is here at the KU Medical Center, there's a bottleneck,” said primary investigator Linda S. Heitzman-Powell, a KU research associate professor and director of community research at the KU Medical Center. “Our last grant enabled us to develop a coach training protocol and we now have certified OASIS coaches throughout Kansas.”
Of the forty coaches trained through OASIS under previous funding, 28 are in Kansas, nine are scattered across the country and three are located in Poland and Turkey. All are working to bring the training to more clinicians who can in turn serve more parents and children.
“Now our new funding is providing the resources to be able to train these coaches and then develop the online infrastructure for them to be able to go in and set up their own training programs for agencies,” said primary investigator Jay Buzhardt, associate research professor at Juniper Gardens Children’s Project. “Then they can manage that themselves rather than us having to manage it. The goal is to eventually have regional centers around the country that could then provide coaching to individual agencies, so that all the agencies would be able to train their providers. Ultimately we would like this to be a national resource for any agency that's providing direct services.”
Buzhart noted that OASIS not only helps parents and children build skills together, it also helps parents learn the common language of applied behavioral analysis services.
“It enhances those services, it teaches those strategies, and it helps them talk the same language with the ABA services,” he said.
For Linzi, the program has meant that Baylee and her family are practicing how Baylee engages with the world. In the long run, Linzi said, OASIS has provided the confidence and understanding needed to effectively work with her daughter.
“I would hope that any parent that has a child with autism would go through a program like this because it gives you control over your life,” Linzi said. “It teaches you what works, it teaches you how to approach your child, and it teaches you how to engage with them. And then once you have that engagement, the sky's the limit.”