Tennessee Autism Council’s Report Outlines Many Challenges Ahead
By Quentin Humberd
About the Author
Dr. Quentin Humberd is a Board-certified Developmental Behavioral Pediatrician with more than four decades of experience providing pediatric care. He is currently the medical director of the Screening Tools and Referral Training (START) program for the Tennessee Chapter of the American Academy of Pediatrics. He was most recently the director of the Child and Family Behavioral Health System and chief of the Exceptional Family Member Program, Blanchfield Army Community Hospital at Fort Campbell, KY. He served as president of the Tennessee Chapter of the American Academy of Pediatrics from 2006-2008. Dr. Humberd has an extensive history in primary care pediatric practice and has participated in primary care provider trainings as well as policy development and implementation. He has presented and published on autism in young children and implemented a statewide screening and diagnosis model (STAT-MD) training pediatric practices, providers and organizations in Tennessee as well as Oklahoma, Arizona, Alaska and Puerto Rico. He maintains a clinical faculty appointment as Associate Clinical Professor in Pediatrics, Vanderbilt University School of Medicine.
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For those of you that are fans of Star Wars, the following account will sound familiar. For the rest, it will be just as well since I don’t want to give away the ending. A long time ago and far away from present-day Tennessee, there were a determined group that began to try to understand more about autism and how we could help individuals and families live more successful and fulfilling lives. This group gathered and formed an Alliance and started working diligently to understand what was needed and to gather support. There was, however, at the same time a large Empire in place that did not have the same priorities, and thus the Rebellion was born. What happened next was an adventure spanning several years that had many turns and twists, but ultimately resulted in an initial victory for the Alliance and a recognition that sometimes the Force is with us. Yet there are still other Forces that work to turn back the Alliance, and so the saga continues. We will press on until the challenge is met, and we can achieve a brighter future for all those with autism spectrum disorder, their families and caregivers.
On many days that is the way I think of the council that I was asked to lead, the Council on Autism Spectrum Disorder. Gov. Bill Haslam signed the Council into law in April 2017 and charged us with seven goals:
- Assess the current and future impact of autism spectrum disorder on the residents of the state.
- 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.
The council is composed of all the state departments and commissions that impact individuals with autism spectrum disorder in partnership with three individuals with autism and/or their caregivers from East, Middle and West Tennessee. (Right now, the council has one person on the spectrum, while the others are parents or family caregivers of children and adults on the spectrum.) It is in many ways like an Alliance against an Empire, but I have not told them that. In truth the members on the council are dedicated and work very hard to understand how to help develop policies and programs that can address the challenges. Our state partners on the council are currently the following:
- Department of Intellectual and Developmental Disabilities
- Department of Education
- Department of Health
- Department of Human Services, which includes the Division of Rehabilitation Services is responsible for the Vocational Rehabilitation Services
- Department of Mental Health and Substance Abuse Services
- Department of Commerce and Insurance
- Division of TennCare
- Tennessee Council on Developmental Disabilities
- Tennessee Commission on Children and Youth
We elected to address these challenges via four committees, in which we invite public participation. The committees are Information/Resources for Individuals and Families, Early Intervention/Education, Health Care, and Aging/Adulthood. Through the work of these committees, the council has produced its first Annual Report, which I am happy to announce has been met with acceptance and enthusiasm by all our state partners. You can view the full report HERE, but the initial year’s work resulted in these primary initiatives, which are broken down by each of the committees:
Information and Resources for Individuals and Families
Information needed by individuals and families about services and supports for autism spectrum disorder are both inconsistent and difficult to access. No matter where a family lives, they should have access to accurate and up-to-date information (“no wrong door”). The Autism Council supports policy changes to develop a “Lifespan Approach” that includes a resource map and timeline of suggested actions for families and individuals seeking resources, and this will provide additional information on legal and financial supports.
Early Intervention and Education
Current training concerning the specific educational interventions for autism spectrum disorder are lacking and poorly coordinated for both families and educators. The Autism Council will advocate for policies that provide parent, teacher, and administrator training for both the early intervention (ages birth to 3 years old) and education systems (ages 3 to 22). In addition, the Autism Council recommends policies that support a family-centered collaborative approach for individuals, families, and educators concerning educational rights and responsibilities.
There are inadequate screening initiatives and limited access to early diagnosis for autism spectrum for both young children at risk and older individuals who demonstrate symptoms and impairments. Too many find it difficult, if not impossible, to access high-quality intervention and treatment services. The Autism Council recommends the development of a System of Care (a coordinated network of community-based services) that is patient-centered, comprehensive, team-based, and accessible that supports the provision of comprehensive health services statewide. This includes policies in collaboration with the Department of Health, the Department of Intellectual and Developmental Disabilities, the Division of TennCare, and other state department council members that promote both services for patients and training for community health care providers, facilitated through technology, to treat individuals with autism spectrum disorder across the lifespan and support their families.
Aging and Adulthood
Training and transition from the educational system to the workforce needs improvement for individuals with autism spectrum disorder, and this contributes to the fact that studies indicate that up to 75% of adults who have received a post-secondary education with an autism spectrum disorder are not employed. The Autism Council will collaborate with Department of Human Services and the Department of Education to report on transition and employment services offered to individuals with autism spectrum disorder in Tennessee to better understand how the provision of services are determined. In addition, the council will promote policies to expand autism-specific trainings for Vocational Rehabilitation counselors and other employment service providers that serve those with autism spectrum disorder and provide information to potential employers concerning the benefits of employing persons with autism spectrum disorder.
If these are issues that you feel are important, and you want to learn more or participate in the work of the committees, please contact Pat Edmiston at our liaison agency, the Department of Intellectual and Developmental Disabilities via email at firstname.lastname@example.org via phone at 901-308-3430.You may get in touch with your inner Jedi and help us bring a better outcome for all those affected by autism spectrum disorder in Tennessee. May the Force be with you!
I’d like to thank Quentin for sharing his views on the Council on Autism Spectrum Disorder and information on the council’s first annual report. I’d also say a word of thanks about Quentin’s openness to having community members participate in committee work and to truly listening to the views of individuals on the spectrum and their family members. He is passionate about this work, and it shows!