KansasCenter for Autism Research and Training
Debra Kamps, Director
Testimony to the Joint Committee on Children’s Issues
December 9, 2008
K-CART is one of 13 Centers in the University of Kansas Life Span Institute
Debra Kamps, Director (Edwards Campus and Juniper Gardens Children’s Project)
R. Matthew Reese, Co-Director (University of KansasMedicalCenter)
The mission of K-CART is to BUILD a Center of state and national significance to address the growing number of children identified with Autism Spectrum Disorders(ASD) and their families through university affiliated research and training.
We are committed to disseminating effective, evidenced-based practices to improve the lives of persons with autism across the life span.
- Researching the Neurobehavioral Basis of Autism/ASD
- Researching Improvements in Methods for the Management of ASD
- Training for Early Detection of ASD
- Training to Deliver Evidence-Based Interventions for Managing ASD
- Building the Capacity for Autism and Developmental Disabilities Clinical Services
Currently we have 45 university faculty and staff participating in the K-CART autism initiative.
Today, my testimony will focus on transition and adult services. My remarks will specifically address how to build or expand services that use “effective practices.” Sources include input from more than 50 parents participating in focus groups this spring, published intervention research, knowledge from my colleagues, and my experience as a researcher and former teacher of children with autism.
Three things are relevant:
How do we define effective practice?
What are some effective practices specific to Autism Spectrum Disorders?
How can we integrate the premise of effectiveness into transition programming and adult services for persons with ASD?
(1) How do we defineeffectiveness?
Universities are in the business of research and training. Standards for defining effective practice are that there is sufficient research using appropriate methods to show evidence for the intervention or practice. The data or outcomes for participants show a positive improvement in important behavior such as social communication, adaptive behaviors, or job skills. A second way is to have a number of “clinical replications.” This means there are a number of people in different geographical locations using an intervention or method with outcome data showing improvement, but without the experimental methods.
My intent is to emphasize that effectiveness of what we do for persons with disabilities is as important as accessing services. If we are going to put forth a systematic effort to build capacity in our systems for transition and adult services, it is imperative that we do it using effective techniques.
In the field of autism, determining what is effective or what works is sometimes challenging. This is because of the unique characteristics of the disorder related to problems in 4 key areas:
Social interaction and developing relationships,
Language and communication skills,
Behavior patterns such as repetitive behaviors, obsessions or rituals,
Sensory issues such as oversensitivity to bright lights, textures, noise levels.
In general, it is harder to reach, teach, and motivate individuals with an ASD.
(2) What works? What are some effective interventions for persons with ASD that are relevant to transition planning and services for adults?
In the business world, effectiveness means cost savings. It is not apparent that we apply a cost-benefits approach in our treatment decisions.
Each individual with autismaccrues about $3.2 million in costs to society over his lifetime (includes loss in productivity and adult care; Ganz, 2007)
We all care about people and the quality of life for persons with disabilities, but we can do a better job if we pay closer attention to the effectiveness of service through the use of interventions that work. A critical part for determining the effectiveness of service is the accurate collection of data and the use of those data to modify the intervention if it is not working or to change the intervention to increase independence.
First, proven evidence-based interventions/therapies from which children and adolescents make significant progress in ‘learning new skills’ and ‘adapting to new environments’ include:
(1) teaching social competence and problem solving using cognitive behavior therapy
Steps: define interaction skill (commenting, appropriate question asking);
role play with adult and peers; use skills in natural setting such as restaurant, grocery store, library; a trained coach gives feedback in the setting, and reinforcement
(2) using applied behavior analysis-based and function-based behavioral interventions that
reduce the need for challenging behavior
teach replacement behavior;
(3) accessing peer networks and peer mentors to teach social competence and skills;
(4) video modeling, using a 5 minute video clip to teach specific skills, examples:
- ATM use
- making coffee
- conversational speech
- perspective-taking
- talking, writing, & taking turns
- simple meal preparation
- peer directed social language skills and social engagement.
Second, environmental modifications to provide accommodations for the person with ASD to maintain and generalize skills and participate in community settings with nondisabled peers (schools, independent living and job settings) include:
(5) using of preferences, choices, special interests in the environment/activity
(6) providing visual prompts such as visual schedules (think hourly Blackberry),
scripts, written text cues, social stories
increases predictability and provides structure
(7) using specialized communication systems using pictures, voice output, signing
(8) self-monitoring (e.g., creating a list and checking items when each is completed,
recording number of appropriate conversations and partners during a work break)
Third, effective interagency and parent/professional partnerships are necessary to ensure access to needed services. Part of these collaborations need to provide effective and continuous training for the persons with ASD and their service providers to include:
(9)ongoing coaching and feedback for the person with ASD and “in vivo” training (in the real living or job setting, this is absolutely critical!); and
(10) training for peers, job coaches, co-workers, human resources personnel, service providers with follow-up consulting-models of ‘train and hope are ineffective’.
(3) How can the state integrate a model of effectiveness into transition planning and adult services?
Fund training in Effective Practices for ASD across agencies – Mental Health, Vocational Rehabilitation, Community Developmental Disabilities Organizations, Foster Care families and providers, Schools, etc. K-CART and the Autism Community receive repeated requests for training for families and service providers to work effectively with children and adult persons with ASD.Common requests are for training regarding social skills, challenging behaviors, and how to teach effectively. Funding for training needs to include the use of technology such as tele-medicine, web-cams, and access to this technology throughout the state. The Autism Training Program for training service providers for the KS SRS Autism Medicaid Waiver (Linda Heitzman-Powell, Director) is an effective model
Streamline funding mechanisms that are “person centered” rather than agency centered for clients with ASD. Allow flexible payments of “ASD Coaches” for their services across settings…community college, university, grocery store, apartment, job site. Knowledge of how to support a person with ASD comes not only from training and experience in evidence based interventions but also from fluency in the use of appropriate data-collection systems and how to use those data to determine the effectiveness of the current support service. Persons with ASD have unique and individual differences. Sometimes it takes a while to figure out what works for that individual or how to tweak an intervention or environmental accommodation to be just right for that person. Effectiveness is enhanced by this knowledge of the individual. It saves money and valuable time to let that knowledgeable service provider or team of providers serve the person across agencies.
Fund an Autism/DD TechnicalAssistanceCenter with staff to conduct training state-wide and provide important follow-up consultations. Please note that follow up consultations are PROACTIVE and provided to make sure consumers are doing well to start and maintain NOT just for crisis intervention. The TA center would have staff with expertise in interventions to address core features: Social, Communication, and Behavior. Poor organizational and social skills and inappropriate behavior are the major reasons for lack of access for persons with autism to jobs and community settings. A goal would be to eventually provide enough training to enable agency level “autism experts.” The Kansas Institute on Positive Behavior Support is an effective model for training agency staff over a period of time to become experts in managing behavior for persons with disabilities (some with ASD).
Increase Tax Incentives for Employers and Landlords to hire and support persons with ASD.
In Summary
1. There is a need for improved transition planning and adult services for persons with ASD. That is apparent.
2. There is science to support effective practices.
K-CART is in the business of conducting and disseminating the science of effective intervention.
3. Effective intervention will improve the quality of life for persons with ASD and ultimately, decrease the overall cost to the state and increase revenue by producing productive members of our society.
Sources/Materials
Ganz, M. (April, 2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics & Adolescent Medicine, 16, 343-348.
Luiselli, J., Russo, D., Christian, W., & Wilczynski, S. Eds. (2008). Effective Practices for Children with Autism: Education and Behavioral Support Interventions that Work. OxfordUniversity Press, New York.
Executive Summary of K-CART Parent Focus Groups in Wyandotte and Johnson Counties, (April 2008 and on-line survey Fall, 2008).
Life After High School (2007), Autism Society of America. lwa highschool
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