Council on Autism Spectrum Disorder is a First Step in the Right Direction

About the Author

John Shouse is president of The Arc of Tennessee Board of Directors, chair of the Vanderbilt Kennedy Center Community Advisory Council, and parent of three children, including a son on the autism spectrum. He is co-author, with Paula Kluth, of “The Autism Checklist: A Practical Reference for Parents and Teachers”, ©2009, Jossey-Bass; John Wiley & Sons, Inc.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email janet.shouse@vanderbilt.edu.

By John Shouse

One of the successes of this legislative session in Tennessee is that Gov. Bill Haslam recently signed into law a bill passed by both the Tennessee House and Senate, which, as enacted, establishes the Tennessee Council on Autism Spectrum Disorder.

What exactly is the purpose of this Council, and how is it likely to impact the lives of Tennesseans living with autism and their families?

To answer that question, we must first go back and take a brief look at the history of the bills that created this council, and how they came to be introduced in the first place.

The idea for such a council was built upon work done over the past several years by the Tennessee Autism Summit Team. The Summit Team is a voluntary partnership of stakeholders across the public, private and nonprofit sectors. The Summit Team was created when Tennessee’s two University Centers for Excellence in Developmental Disabilities (at the Vanderbilt Kennedy Center in Nashville and the UT Boling Center in Memphis) hosted the Southeast Regional Autism Summit for the Association of University Centers on Disabilities. This summit, held in 2009, brought together leaders from Tennessee, North Carolina, South Carolina and Kentucky to discuss the current state of services for young children with or at risk for autism and related disabilities. I was very pleased to have been asked to be part of that initial summit.

For those of us from Tennessee who were present at that initial 2009 summit, it was immediately obvious that we needed to take the initiative to keep our group going, to continue the dialogue we started that day with stakeholders from across the state, and to see if we could build upon the energy and the ideas shared there.

One of the lessons from that initial summit, and from our first few meetings afterward, was that there was already more going on in our state regarding autism than any of us might have imagined. To be sure, we could see from the outset that Tennessee had a long road ahead to achieve the same levels of support that were commonplace in some of our neighboring states, and in other states across the country. One of the problems we discovered was that too much of what WAS happening here was being done in isolation, without adequate knowledge across systems, departments, organizations, etc. of what other parties were doing.

There was simply far too little coordination and communication going on. And frankly, there was almost no deliberate strategic approach to ensure that any such coordination would EVER happen.

The Tennessee Autism Summit Team secured a State Planning Grant from the Maternal and Child Health Bureau of the U.S. Department of Health and Human Services. The stated outcome of the grant was to make recommendations for the creation of a Comprehensive, Coordinated System of Care around autism. This would lead to the preparation of the “Tennessee Autism Plan,” published in 2014. You can read the “Tennessee Autism Plan” here.

Fortunately, the core principles that define a “System of Care” are already enumerated in state law in Tennessee.   These principles are:

  • A comprehensive array of services addressing physical, emotional, social, and educational needs.
  • Individualized services based on the unique needs and potential of each individual, and guided by an individualized service plan.
  • Services provided in the least restrictive environment.
  • Families as full partners in all aspects of planning and delivering services.
  • Links between agencies and programs with mechanisms for planning, developing, integrating and coordinating services.
  • Promotion of early identification and intervention that enhances the likelihood of positive outcomes.
  • Case management or similar mechanisms provided to each individual to ensure that services are provided in a coordinated and integrated manner that can address changing needs.
  • Smooth transitions from youth to adulthood with the supports and services needed.
  • Services responsive to the cultural and linguistic needs of all individuals.

Another part of what the Autism Summit Team did as a part of our work was to engage in different ways of communicating with a broader base of stakeholders across the state. This included focused workgroups with people on the spectrum, families, service providers, advocacy groups, and state agencies, among others. We also developed a comprehensive survey to find out the priorities of families, individuals, caregivers, etc. And notably, we conducted a series of Community Conversations across the state to allow those stakeholders to meet, engage, and bounce ideas off one another in open forum.

Additionally, we were very interested in looking at how other states with more mature and well-developed Systems of Care in autism had “gotten there.” One of the things we saw very quickly was that for many of the states where we knew that they were doing a “good job” providing autism services and programs, nearly all of them had at least some kind of “home” in state government for autism. Those states had a planning council, or a “Blue-Ribbon Panel,” or an office housed within a state government department, or even a stand-alone Department of Autism Services. By formalizing a “home base” in state government, these states could take a strategic approach to coordinating efforts surrounding autism.

With the guidance and leadership of the Tennessee Disability Coalition, the Autism Summit Team began work on crafting how this idea might become a reality in Tennessee.

To that end, House Bill HB0384 introduced by Rep. Ryan Williams, R- Cookeville, and Senate Bill SB0199 introduced by Sen. Doug Overbey, R-Maryville, began working their way through the legislature.   Both bills passed their respective houses early in this year’s legislative session, and it was signed by Gov. Haslam in April! You can read the bill here.

Many kind thanks to all of you who took the time to speak personally to a legislator about the need for this council, to write letters or emails or make phone calls.   When our community comes together with shared purpose, we CAN get things done!

From the language of the bill as signed by the Governor:

This bill creates the Tennessee Council on Autism Spectrum Disorder, which will establish a long-term plan for a System of Care for individuals with autism spectrum disorder (ASD) and their families. The advisory council must make recommendations and provide leadership in program development regarding matters concerning all levels of autism spectrum disorder services, including, but not limited to, health care, education, and other adult, adolescent, and children’s services.

Further,

The council will consist of the following members:

(1) The commissioner of health or the commissioner’s designee;
(2) The commissioner of intellectual and developmental disabilities or the commissioner’s designee;
(3) The commissioner of education or the commissioner’s designee;
(4) The commissioner of human services or the commissioner’s designee;
(5) The commissioner of commerce and insurance or the commissioner’s designee;
(6) The deputy commissioner of the bureau of TennCare, or the deputy commissioner’s designee;
(7) The commissioner of mental health and substance abuse services, or the commissioner’s designee;
(8) One representative of the council on developmental disabilities; and
(9) Six adult individuals from persons with a diagnosis of ASD, or who are either family members or primary caregivers of persons with a diagnosis of ASD; provided, that two individuals must represent each grand division of the state and those persons will be appointed to staggered terms by the governor after the governor receives nominations from Tennessee not-for-profit organizations that serve individuals and families with autism spectrum disorder.

Additionally, the bill requires the Council to

(1) Assess the current and future impact of autism spectrum disorder on Tennesseans;
(2) Assess the availability of programs and services currently provided for early screening diagnosis and treatment of autism spectrum disorder;
(3) Seek additional input and recommendations from a board representing stakeholders that includes, but is not limited to, providers, clinicians, institutions of higher education, and those concerned with the health and quality of life for individuals with autism spectrum disorder;
(4) Develop a comprehensive statewide plan for an integrated system of training, treatment, and services for individuals of all ages with autism spectrum disorder;
(5) Ensure interagency collaboration as the comprehensive statewide system of care for autism spectrum disorder is developed and implemented;
(6) Coordinate available resources related to developing and implementing a system of care for autism spectrum disorder; and
(7) Coordinate state budget requests related to systems of care for individuals with autism spectrum disorders based on the studies and recommendations of this council.

The council will operate under the administrative support of the Department of Intellectual and Developmental Disabilities. I would like to personally thank Commissioner Debbie Payne and Alex Heart, assistant commissioner for Policy & Innovation of DIDD for their roles in making this possible.

In the time since the governor signed the council into law, I have had several people in our disability community ask me about it. What’s this all about? Is this just another “throw ‘em a bone” token effort that will amount to nothing? How is this going to be important for my child now and in the future?

The answer, of course, is that time will tell. Progress is often incremental … and sometimes frustratingly so. Particularly as we watch our kids age from young children through adolescence and into adulthood. But I do believe that this council is a very important step in the right direction.

It is a clear acknowledgement by our state leadership that achieving a high quality of life for those living with autism is possible. It is an affirmation that, with a strategic and coordinated approach, we CAN impact their quality of life with the actions we take, the systems we improve, and the services we develop and perfect over time.

Our kids and adults on the autism spectrum are worth it, and deserve no less than our best efforts.

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