Schaefer Whitby Discusses the Delta Autism Project
Peggy Schaefer Whitby: Hi, Shannon. Thank you for having me today.
SM: Absolutely. Peggy, you noticed that lots of kids in the Southeast part of the state weren’t accessing the Medicaid Autism Waiver program which provides intensive services for young children with autism and that’s when you took action. Can you tell us about that?
PSW: Yes. Here at the University, we have a contract with Partners for Inclusive Communities to provide clinical consultative services to all the children on the Medicaid Waiver program. Basically, we provide support to the therapy teams to help them provide quality, evidence-based practices to children with autism and their families across the state. Now there’s other areas of the state that are problematic as well, but it seemed like Southeast Arkansas was the area where we had the least number of people accessing these services. In the state of Arkansas, we have another database called the Autism Diagnostic Monitoring Network and this project is a national project where we look at the number of children with autism across the nation. This project is out of UAMS and what they do is they go into every county in the state and they identify the children with autism. And part of their data showed us that there are very few children in the Arkansas Delta being diagnosed with autism as well. So we realized we had an issue of diagnoses and receiving intensive early intervention services.
SM: Why is it so important for children to receive an autism diagnosis early?
PSW: it’s critical that children with autism receive a diagnosis early so that they can access evidence-based services, or treatment, that directly impacts the core symptoms of autism. About two-thirds of the children with autism respond very very well to early intervention and have really great outcomes.
SM: Peggy, when you were researching services for children and families in the Arkansas Delta you quickly realized that that area was a “therapy desert.” Tell us what that means.
PSW: In the state, in that area, we have very few speech-language pathologists. We have very few occupational therapists. And we had zero behavior analysts that are trained to provide services to people with autism and their families. And so I realized that if we are going to impact that area we needed to find specialists that could work in that area. The more time I spent in the Delta I realized that there were really good people down there who had really great teaching skills and that given the opportunity would step up and provide these autism services. So, by a therapy desert, what we mean is that there are no therapists to provide the services to these children. So even if these children were receiving diagnoses, they would not be able to receive applied behavior analysis services to treat the autism.
SM: So you all are training behavior analysts in the Delta, tapping from that area, and they are learning how to take care of these kids and what to do?
PSW: Yes, and really the term for that is called upskilling. We’re trying to find people in the community to upskill and so right now we have four people in the area that are completing their coursework and master’s degree coursework in applied behavior analysis. Three of them are completing the coursework here at the University of Arkansas. Another person is completing the coursework somewhere else, but lives down there in the Delta and part of the project is I provide supervision to those four — actually three — Behavior Analysts. To become a Behavior Analyst you have to have 1,500 hours of clinical supervision and for many that’s another barrier to becoming a Behavior Analyst because one, there’s nobody there to supervise you (because it has to be another behavior analyst) and you can find somebody to do it distance but many times they charge a lot of money and many of our folks down there can’t afford to pay for supervision. So part of the project I’m supervising and providing the clinical supervision for several folks to become Behavior Analysts. Now once they become Behavior Analysts they will supervise what we call Registered Behavior Technicians and these folks are the people that do the one-on-one work with the children. So the Behavior Analyst comes in they do all the assessment, they write the treatment plan, they teach and supervise the behavior technicians on carrying out the program. But the behavior technician carries out the program between 20 and 30 hours a week, depending on the child’s needs. So we were able to partner with Behavior University who does online registered behavior technician training and they donated all the training so right now we have 10 people that have completed the registered behavior technician training and as of yesterday three of them have contacted me they’ve passed the national exams. So we’re hoping that by May we’re going to have three or four behavior analysts in the Southeast and about 10 registered behavior technicians that can begin serving that area.
SM: What other research are you conducting in rural Arkansas for children with autism and their families?
PW: The first one of course is this upskilling. We really need to document what we’re doing. How do we identify these people? What are some of the barriers to getting them through the training? And does it work long-term? Are these people staying in their communities and are more children being served by people in their own community? So we’re going to continue to document that and look at the outcomes and then we’d like to replicate that in other areas. One of the things that I’m looking at is the variables that impact whether a family will access these services. We know that not having the therapists local is one problem. We know that not getting the diagnosis is clearly a problem. But we also suspect that there may be other cultural variables that impact whether a family will seek out and receive home-based applied behavior analysis services. One of my projects I’ve been interviewing families of young children with autism in rural Arkansas to look at their experiences with diagnoses, their attitudes and perceptions of accessing services. The other two things that I’m looking at with these families is quality of life and coping strategies. Because when we look at the literature, the literature tells us that families of children with autism experience stress levels similar to a combat soldier.
SM: Can you fill us in on what’s happening now with the Delta Autism Project?
PW: Well, we’re very happy to report that I think in the next six months we’ll be doing diagnoses of autism there. You have to have a speech-language pathology report, you have to have a clinical psychologist who does an assessment and says that the symptoms appear to be consistent with an autism spectrum disorder and then you also have to have a medical doctor who signs off. So it’s kind of these three things that we need in the state of Arkansas for that diagnoses. Well, again, we have a shortage of speech-language pathology so one of the things we did is we partner with the schools and the preschool settings and the early intervention folks there because they do have speech-language pathology services. And so if the child is receiving a report from the school and they have assessed for autism could we use that report instead of redoing that service? Or if the child doesn’t have the speech-language pathology would the school or the early intervention system partner with us? The other area was the clinical psychologist. We could not find a clinical psychologist in that area. We have finally identified somebody from West Memphis who is willing to come down and do the clinical psychology assessment with us and we have a medical doctor at UAMS East who we’re going to be talking with about providing some of the medical diagnostic assessments. The other thing I believe is really important is sustainability and so when we look at what we’re doing there we have to have strong community involvement and people in the community running these programs because I can’t stay there forever. You know I’m going to leave and so we want these projects to be able to be sustainable over time. The next area for the project — and I think we don’t look enough at this — we understand how to work with a kid with autism and we know how to, through applied behavior analysis, how to kind of address these core symptomologies, but it’s really good teaching. That’s what it is. We assess the child right down to where they are and then we teach these small components and our kids learn fast when we do that. What we need to really consider is how do we use the applied behavior analysis teaching skills when we’re working with the adults? So how do we support teachers? How do we support the therapists in working with these kids? We really need to look at how do we provide you know the professional development. How do we provide continued support for teachers and therapists in that area and I think coaching is a model that needs to be looked at. I’ve been working with the University of North Carolina at Chapel Hill who has a grant out. Dr. Kara Hume has a grant under review right now for a coaching model in rural America and if she gets this award we’ll be working with her to look at how do we provide coaching for teachers and therapists working with young children with autism so we can continue with the procedural integrity of teaching and problem-solving and teaching people how to problem-solve when things don’t go right. So I think that’s an area. We would like to kind of take this project and look at how do we replicate in other areas of Arkansas. My project is basically an unfunded project. I do have some partners down in the Delta who support me and support my travel down there, but we’re going to need some funds long term to do this. My ultimate goal would be to have five rural centers for autism spectrum disorders and related disabilities. And these five rural centers we would staff with professionals that would be working directly with the communities, supporting people with autism and related disabilities as well. But again, that would be a funded dream for me. I plan to write a grant in the next year to replicate the upskilling, the family quality of life and coping strategies and maybe the pastors in two other areas in in the U.S. I’d really like to take this research and go to Appalachia and look at services there and then I’d like to go to northern Arizona and look at services there. I’ve chosen kind of these three areas because they have some of the highest poverty in our nation. So I really want to look at kind of cultural differences in autism services or access to services across different cultures of extreme poverty.
SM: Peggy, thank you so much for joining me today. I appreciate it.
PW: Thank you for having me, Shannon.
SM: This has been Short Talks From the Hill of the University of Arkansas.
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