Council on Autism Spectrum Disorder Welcomes Input in 4 Vital Areas
By Pat Edmiston
About the Author
Pat Edmiston is the DIDD director for Developmental Disability Services and staff liaison to the Tennessee Council on Autism Spectrum Disorder. She has been a medical social worker for 40 years and started in pediatrics working with children with special health care needs. Pat has worked in the DIDD system for the past 20 years. She was a paid advocate for individuals with intellectual and developmental disabilities for 12 years and the director of a residential provider agency in West Tennessee for six and a half years. Pat joined the DIDD team in 2016.
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In April 2017, Gov. Bill Haslam signed House Bill HB 0384 and Senate Bill SB 0199 into law creating the Tennessee Council on Autism Spectrum Disorder. For families, people on the autism spectrum, and community advocates across the state, this was a long time coming. (You can read about the history here.)
Gov. Haslam appointed three family members and/or self-advocates to the Council from each grand region of the state (West, Middle and East). In addition, a representative from each state department that may be involved with individuals with autism spectrum disorder during their lifespan has a seat on the Council: the Department of Intellectual and Developmental Disabilities, the Department of Education, the Department of Health, the Department of Human Services, the Department of Mental Health and Substance Abuse Services, the Department of Commerce and Insurance, the Division of TennCare, the Tennessee Council on Developmental Disabilities, and the Tennessee Commission on Children and Youth. The Council operates under the administrative support of DIDD. The legislation is very prescriptive and sets several goals for the Council. These are:
- To establish a long-term plan for a system of care for individuals with ASD and their families; and
- To 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
- Other adult, adolescent, and children’s services
In addition, the legislation states that the Council shall:
- Assess the current and future impact of ASD on the residents of Tennessee;
- Assess the availability of programs and services currently provided for early screening, diagnosis, and treatment of autism spectrum disorder;
- Seek additional input and recommendations from stakeholders, including, but not limited to: families, providers, clinicians, institutions of higher education, and those concerned with the health and quality of life for individuals with autism spectrum disorder;
- Develop a comprehensive statewide plan for an integrated system of training, treatment, and services for individuals with autism spectrum disorder;
- Ensure interagency collaboration as the comprehensive statewide system of care for individuals with autism spectrum disorder is developed and implemented;
- Coordinate available resources related to developing and implementing a system of care for individuals with autism spectrum disorder; and
- Coordinate state budget requests related to systems of care for individuals with autism spectrum disorder based on the studies and recommendations of the Council.
If You Want To Be Involved
The Council voted to operate through four committees:
Information for Families/Service Coordination
- This committee is looking about how to ensure families and people with ASD have a centralized location for resources and services. It is considering developing a website for the Council and trying to determine how to educate families on legal resources.
Early Intervention/Education
- This committee will work to assist with getting children from birth to age 3 identified with ASD as early as possible. In addition, this group is looking at additional training for therapists in the community so these children with ASD can get the therapy and services they need through early intervention.
Health Care
- This committee will be working with Dr. Quentin Humberd, developmental pediatrician, family member from Middle Tennessee, and Chair of the Council, Dr. Vaughn Frigon, medical director with TennCare and member of the Council, and Dr. Beth Malow, a neurologist and director of the Sleep Disorders Division at Vanderbilt University Medical Center, who is also a family member on the Council from Middle Tennessee. Dr. Malow and Dr. Humberd have developed a telehealth program that has focused on assisting pediatricians in caring for children with ASD. The health care group is concerned with the disparity between people with ASD who qualify for TennCare services and those who have private insurance. As a result, individuals with ASD may not be able to receive Applied Behavior Analysis services through their insurance provider.
Aging/Adulthood
- This committee will review the training that is provided for the vocational rehabilitation counselors around ASD. In addition, they will look at transition from the education system to adulthood for employment.
The Tennessee Council on Autism Spectrum Disorder meets quarterly in Nashville, and all meetings are open to the public. The committees meet via WebEx conference call for one hour the month prior to the quarterly Council meeting. We welcome anyone who is interested to join us and become a member of one or more of the working committees.The next full Council meeting will be on July 24, 2018, from 10:00 a.m. to 2:00 p.m. at the Tennessee Bureau of Investigation, Training Room 1, 901 R S Gass Blvd, Nashville TN 37216.
For more information or to be a part of one of the Council’s committees, contact Pat Edmiston at patricia.edmiston@tn.gov.
I appreciate Pat’s willingness to share this information, and I appreciate Dr. Humberd’s and the Council’s desire to include other voices in the Council’s efforts. I have attended the Council meetings, and I’ve participated in the conference calls. My comments and participation have always been welcomed. If you have ideas or experiences you’d like to share with one of these committees listed above, I would encourage you to make the time to join. If you have questions or comments, please feel free to email me at janet.shouse@vumc.org.