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Host: Scott LaMar

Smart Talk: A better way to care for autistic and intellectually disabled?

Written by Scott LaMar, Smart Talk Host/Executive Producer | Jun 29, 2015 9:15 AM
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What to look for on Smart Talk Monday, June 29, 2015:

Autism spectrum disorders (ASD) are a group of complex disorders of brain development that are characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behavior.

Those with Intellectual disabilities (ID) have significant limitations in both intellectual functioning and in adaptive behavior which covers many everyday social and practical skills.

Both may require treatment and care over the course of a lifetime.

Both also are treated with interventions and support.  The conditions themselves are not treated with medications.

A new concept is being implemented to deliver services to those with ASD and ID.  It's a patient-centered health care home model.

We'll learn more about it on Monday's Smart Talk with Dr. Michael Fueyo, Director of the Center for Autism and Developmental Disabilities and Tim Caldwell, Director of Applied Behavioral Analysis at CADD.  Both are affiliated with Philhaven Behavioral Health.

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Dr. Michael Fueyo and Tim Caldwell on Smart Talk

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  • Scott LaMar img 2015-06-29 10:04

    Alison writes...
    Thank you Dr. Fueyo and Tim Caldwell for what you are doing for individuals with autism.

    Here is my question:

    Given the known research on the effectiveness of interventions derived from the science of applied behavior analysis, it is of great concern to me that most providers of BHRS are not adopting these interventions and, furthermore, in many cases, ignore them all together. In addition, there seems to be a significant lack of trained staff and a lack of awareness and action taken at the administrative level (Department of Human Services and the Managed Care Organizations providing the guidelines and regulations). In fact, their guidelines often impede the delivery of these effective interventions.

    What is your opinion on the long term impact on both:
    • The system as a whole (e.g., if a cost-effectiveness analysis is done on the effectiveness of BHRS, but they are not requiring and often denying these types of interventions, then is there a risk of these services being deemed ineffective and as a result maybe even put the funding for these services at risk?)
    • The outcomes of each individual receiving services (when they are more often than not, ineffective)? In many cases I have encountered over the years, there is a lack of effective interventions despite the agencies claiming they are using “ABA”. Very few agencies are addressing the staff training needs and ensuring fidelity of implementation of the interventions.

    • Tim Caldwell img 2015-06-29 12:19

      Alison,

      Thank you for the question. I agree with your assessment that there is a significant difference between providers actually implementing interventions based out of the science of Applied Behavior Analysis and those that use the term as a catch all for any type of treatnebt involving behavioral issues. There is a significnat research basis that shows the problems of having watered down versions of ABA based programs. I also agree that some of the regulations providers face within the behavioral health system present significant challenges to conducting research based intervention.

      It is helpful to have individuals such as yourself that are knowledgable about the research literature. We need more people to be able to help parents, individuals, health providers, and payers understand that engaging in an ABA based program takes a committment to: hiring highly experienced Board Certified Behavior Analysts, training all staff on the concepts and interventions based out of ABA, providing ongoing supervision and feedback to staff on their intervention, and the use of data collection and analysis to determine if the interventions being utilized are beneficial.

      I encourage you to continue advocating for ABA based services that provide strict adherence to the principles of the science. There is an advocacy group that is working with legislators and payers to understand what true ABA based services should look like.

      ABAinPA: abainpa.com

      I am also conducting a workshop at the Penn State National Autism Conference that discusses this same topic and will hopefully help others understand the importance and components of true ABA based programming.

      http://autism.outreach.psu.edu/agenda/conference-schedule/organized-knowledge-and-organized-life-how-science-behavior-analysis

      Thank you

  • Scott LaMar img 2015-06-29 10:15

    Cindy says...
    I have appreciated CADD's people- centered and team approach. They come alongside parents and offer the scaffolding for the whole family, being so wholistic in nature.

    As a mother of a 21-year old on the autism spectrum, we have been through a lot of challenges and received services along the way. But many services drop off at age 21, though obviously his needs and care continue for his lifetime. He is very vulnerable without continued care.

    This long term care approach is life-giving to families who have shouldered these things for years.


    So my question - how can this be funded? And what can we do to come alongside and support CADD and this model?


    Thank you for providing this format to getting this news out in the public forum.

    • Tim Caldwell img 2015-06-29 12:32

      Cindy,

      Thank you for your comments and questions. This is an issue we see daily at CADD and one in which we are struggling to find answers as well. We have just finished the process of becoming a provider for Behavioral Support for individuals with an identified Intellectual Disability and access to waiver based funding. Unfortunately these types of services do not help those individuals on the spectrum without an ID diagnosis.

      There are other programs out there for the adult population. I am providing the website for the ASERT call center which can connect families with specific information about programming options.

      www.paautism.org

      I would encourage you to advocate to your legisltaors and help others to udnerstand the issue our society faces with an ever increasing number of adults with autism and insufficient funding to meet this population's needs.

      If you would like to become involved in helping CADD directly in trying to develop these types of services I would direct you to our website page which outlines development and volunteer support.

      https://www.philhaven.org/ProgramsandServices/CenterforAutismandDevelopmentalDisabilities/CADDTourWalkingwithFamilies.aspx

      Thank you

  • Tim Caldwell img 2015-06-29 12:30

    Cindy,

    Thank you for your comments and questions. This is an issue we see daily at CADD and one in which we are struggling to find answers as well. We have just finished the process of becoming a provider for Behavioral Support for individuals with an identified Intellectual Disability and access to waiver based funding. Unfortunately these types of services do not help those individuals on the spectrum without an ID diagnosis.

    There are other programs out there for the adult population. I am providing the website for the ASERT call center which can connect families with specific information about programming options.

    I would encourage you to advocate to your legisltaors and help others to udnerstand the issue our society faces with an ever increasing number of adults with autism and insufficient funding to meet this population's needs.

    If you would like to become involved in helping CADD directly in trying to develop these types of services I would direct you to our website page which outlines development and volunteer support.

    https://www.philhaven.org/ProgramsandServices/CenterforAutismandDevelopmentalDisabilities/CADDTourWalkingwithFamilies.aspx

    Thank you