Petition and Open Letter in Support of Tourette Education in New York State
Dear Assistant Commissioner Suriano and Commissioner Elia:

We, the undersigned, believe that Tourette education is key to supporting the success of students with Tourette Syndrome.

Tourette Syndrome (TS) is a neurodevelopmental spectrum disorder which begins in childhood. At the core of the disorder are movements and vocalizations referred to as motor and vocal tics. Motor tics can be simple, such as eye blinking, shoulder shrugging, facial grimaces and neck twisting, or complex movements that involve the whole body, such as hopping, jumping, and twirling. Vocal tics can include involuntary noises, or complex, linguistically meaningful words and phrases. In addition, TS includes a spectrum of associated disorders, such as ADHD, OCD, learning disabilities, anxiety, sleep difficulties, Sensory Integration Disorder and Executive Function deficits.

The latest research statistics published by the Centers for Disease Control indicate that one in 100 children have either Tourette Syndrome or a Tic Disorder. But a lack of knowledge about these disorders means that tics are often mistakenly viewed as a behavioral, emotional or psychological problem. Children are frequently punished, teased and bullied for symptoms that appear purposeful but that they cannot control.

The answer is education. As the attached peer-reviewed studies (http://ow.ly/BiSO30fqh4W) show, attitudes change when school staff receive specialized training in understanding the disorder, and when peers are given developmentally appropriate information about TS. Two things happen when classmates understand and accept neurological differences. First, the stigma is removed. Second, when teachers see that their students understand why behavior expectations are being adjusted, everyone can focus their energies on the learning. These positive effects create an upward spiral: when a child feels accepted, symptoms decrease, and the child is able to put more energy into productive academic work.

The Tourette Association of America (TAA) strongly encourages and supports such training programs. The five TAA chapters in New York State have numerous qualified representatives who have delivered hundreds of Tourette education programs to staff and peers across the state. Based on a deep understanding of the disorder and the school environment, TAA trainers have developed the art form of delivering in-service programs. The trainer first gets to know the child and the family, and is then able to choose the format, length, specific content, tone and delivery that will best support the individual child. Additionally, the TAA has a highly successful Youth Ambassador program, in which teens and young adults with Tourette attend a national training program to be able to go out to schools to conduct peer awareness presentations.

All TAA peer awareness programs are presented with sensitivity to the degree of disclosure preferred by the individual child and family. A description of the TAA’s approach is enclosed. When schools permit Tourette education to take place, everyone wins.

Many schools in New York State embrace Tourette education, as recommended and provided by the Tourette Association. However, a significant number of schools have rejected the Association’s offer to provide training, or have rejected the trainer’s recommended format, audience, length or mode of delivery. Why? Probably because some administrators don’t realize that their knowledge of TS and associated disorders, and classroom management techniques, may be incomplete or out of date.

We believe that clear guidance from NYSED supporting TAA-provided Tourette education would make the difference for the many children who have the bad luck to live in an unsupportive district which clings to ignorance.

We are therefore requesting mandated staff training and peer awareness programs to support all children with Tourette Syndrome in the state of New York. The five New York chapters of the Tourette Association of America and the New York State Consortium of the Centers of Excellence in Tourette Syndrome propose to work closely with NYSED to provide expert training to schools across the state.
Very truly yours,
Sophie Herman
Parent

Malik Herman
Student

Susan Conners, M. Ed.
Tourette Educator
Founder and President of the Greater NYS Chapter of the TAA

On behalf of the New York State Consortium of the Centers of Excellence in Tourette Syndrome,
Heather R. Adams, PhD: Neuropsychologist, University of Rochester Medical Center, Associate Professor, Neurology, Child Neurology and Department of Pediatrics

Shannon M. Bennett, PhD: Assistant Professor of Psychology in Clinical Psychiatry; Director of Psychology in the Division of Child and Adolescent Psychiatry; Co-Director, Pediatric OCD, Anxiety, and Tic Disorders Program; Site Clinical Director, Youth Anxiety Center, all within the Weill Cornell Medical Center

Dr. Cathy Budman, MD: Professor of Psychiatry, Hofstra Northwell School of Medicine; Director, Long Island Center for Tourette & Related Disorders; Member, Medical Advisory Board for Long Island Chapter of the TAA; Member, Medical Advisory Board for Tourette Alliance of Northern Ireland

Kate Callan: Co-Chair, Long Island Chapter of the TAA

Barbara J. Coffey, MD, MS: Professor, Department of Psychiatry; Chief, Tics and Tourette's Clinical and Research Program, both within the Icahn School of Medicine at Mount Sinai; Research Psychiatrist, Nathan Kline Institute for Psychiatric Research

Dorothy Grice, MD: Professor of Psychiatry; Director of the OCD and Related Disorders Clinical and Research Program; Associate Director of the Tics and Tourette's Clinical and Research Program, all within the Department of Psychiatry, Mount Sinai School of Medicine

Sharon Hammer: Coordinator, Youth Ambassador Program, Hudson Valley Chapter of the TAA

Lisa Hazen: President, New York City Chapter of the TAA

Becky Lunkenheimer: Chair, Greater New York State Chapter of the TAA

Jonathan W. Mink, MD, PhD: Frederick A. Horner, MD, Endowed Professor in Pediatric Neurology; Director of the Child Neurology Residency, both within the University of Rochester Medical Center; Member, Scientific Advisory Board of the TAA

Matthew W. Specht, PhD: Assistant Professor of Psychology in Clinical Psychiatry, Weill Cornell Medical College; Assistant Attending Psychologist, New York Presbyterian Hospital Westchester Divisioin; Faculty member, TAA Behavioral Training Institute

Amy Vierhile, DNP, RN, PPCNP-BC: Associate Professor, University of Rochester School of Nursing; Pediatric Nurse Practitioner, Division of Child Neurology, University of Rochester Medical Center; Board Member, Greater Rochester and Finger Lakes Chapter of the TAA

Gary Wainwright: President, Greater Rochester and Finger Lakes Chapter of the TAA

Helene Walisever, PhD: Licensed Clinical Psychologist; Education Specialist, Hudson Valley Chapter of the TAA ; Recipient, TAA 2012 Distinguished Educator Award

Jane Zwilling, PsyD: Co-Chair, Long Island Chapter of the TAA; Education and Advocacy Chair, Long Island Chapter of the TAA; Co-Director, Long Island Center for Tourette and Related Disorders; Co-Director, TAA Youth Ambassador Program

And the undersigned:
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Please help us spread the word -- within New York State.
We'll be collecting signatures until October 22.

Optional: If you wish to submit a separate, formal letter to the Assistant Commissioner, please send it as an attachment to tourette.gnys@gmail.com with the word "Petition" in the subject line, by October 22.

Thank you!

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