About the Work Group on Autism Research and Training

Exciting Programs in Treatment


In 2004 Linda Heitzman-Powell and colleague Jay Buzardt were researching ways to help parents improve the social and communication skills of their children with autism. "Parents were hungry for knowledge," recalls Heitzman- Powell, a researcher at LSI's Juniper Gardens Children's Project. Heitzman-Powell and Buzardt took training materials for educators and translated them into strategies that a mom or dad could use at home.

Heitzman-Powell recalls one mother of a son with autism. Several months into the project, the woman gave birth to her second child, also a boy, also ultimately diagnosed with autism. But what might have been a devastating experience for the family was transformed by early intervention. "I want to say thank you for everything you do for me and my kids," the mom later wrote Heitzman-Powell. "But how do you say thank you to somebody for giving you your kids back?"

The memory still evokes an emotional "what if" response in Heitzman-Powell, associate research professor and director of training for K-CART. "The thought of parents going without intervention for their kids is heartbreaking." But until 2007, Kansas, like most states, had no system in place to train therapists or parents to provide early intervention autism services, outside of traditional graduate and clinical programs. This was a full decade after the Surgeon General of the United States declared autism "the most pervasive developmental disorder" in the country with estimates that 1 in every 110 children would be diagnosed with ASD.

A HISTORIC CHANGE

When K-CART opened its doors, one of its main thrusts was to provide a comprehensive statewide training program specific to ASD. The timing was no coincidence: Kansas stood on the brink of launching a new program for children diagnosed with ASD.

Approved by the legislature in late 2007, the Home and Community Based Services Early Autism Waiver was designed to provide children with an ASD diagnosis, from birth through age five, with access to services not covered by their health care plan. For the first time Medicaid funds in Kansas could support clinical and consultative interpersonal communication and therapeutic services (including services from autism specialists); intensive individual support; respite care for families; parent support and training and family adjustment counseling. Heitzman- Powell said the official recognition by the state that autism places a tremendous financial burden on families opened the door for the implementation of the program. "You need access to early quality intervention implemented by trained, well-qualified staff regardless of how much money you make."

In January 2008 the Kansas Department of Social and Rehabilitation Services (SRS) began accepting applications from eligible children and families. And when SRS looked for an entity to train the providers to serve those children, it turned to K-CART. K-CART's training program became the first state-approved training for providers of ASD services. K-CART offered its first session in May 2008 and in just three years 221 providers have completed the training.

Using evidence-based practices, the program teaches providers and parents how to improve children's communication, social interactions and everyday skills needed to function at school or at home, such as following directions or transitioning from one activity to another. Ten training modules include the following content: (1) job responsibilities and characteristics of autism, (2) behavior analysis and data, (3) principles of behavior, (4) teaching strategies, (5) conducting teaching sessions, (6) variables that affect behavior, (7) behavior reduction strategies, (8) determining the function of behavior, (9) including peers and (10) team meetings and wrap-around services. Jill Koertner directs the Autism Training Program. Other ATP partners include Claudia Dozier and Pam Neidert, both assistant professors of KU Applied Behavioral Science; Community Living Opportunities; Kansas City Autism Training Center; Integrative Behavioral Technologies and Partners in Behavioral Milestones.

BEYOND THE WAIVER

Heitzman-Powell and her team are also developing and testing a training system for parents who live in rural or remote regions of the state. Funded by the National Institute on Disability and Rehabilitation Research, the system uses video conferencing and some face-to-face sessions to help parents improve their child's language and social skills. So far 24 parents have received education, training and on-going feedback on intervention techniques. Heitzman-Powell and colleagues plan to distribute the training curriculum as an evidence-based parent education and training manual for other researchers and trainees.

CHANGING THE LANDSCAPE

In 2011 the Kansas legislature approved insurance coverage for autism-related services for those covered by the state employee health plan, roughly 97,500 people. According to the law, the plan will cover "evidence-based medically necessary autism therapies such as applied behavior analysis."

Heitzman-Powell recites a long list of ways that K-CART's training program has changed the landscape for Kansas children with autism. "We're working on research to continue to identify strategies and techniques that have the most impact," she said. "We need to be able to provide services for more kids."

"More" is the operative word since the state's Medicaid waiver accommodates only 45 children at a time. Heitzman- Powell said more than 250 children are on the waiting list and many will age out before ever getting services.

Fueled by the memory of one mom, two sons and a thank-you note, Heitzman-Powell grows passionate. "We need to get those kids off the wait list," she insisted. "The impact that intervention has on families is more than just child outcomes and is well established. We now need to move beyond this to identifying how these interventions interact with the different subtypes of autism, how to more fully include these children in their natural communities and what strategies are beneficial for older children and young adults. There's still work to be done."



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