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Major Victory for Children with Tourette Syndrome
Individuals with Disabilities Education Act to Classify Tourette Syndrome as Other Health Impaired

From left to right: U.S. Secretary of the Department of Education, Margaret Spellings;  Assistant Secretary for the Office of Special Education and Rehabilitative Services, John Hager; Director for the Office of Special Education Programs, Alexa Posny

Secretary Spellings

Link to the Department of Education website:http://www.ed.gov/policy/speced/guid/idea/idea2004.html Final IDEA Part B 2004 Regulations are 1700 pages long and split up into four sections: two preamble sections, the regulations section, and the appendix section. Tourette Syndrome is mentioned on page 4 of the first preamble section and pages 63-65. In the regulations section Tourette is mentioned in the category of "Other Health Impaired" on pages 1263-1264

August 3, 2006 – Bayside, NY - The Department of Education has announced the final regulations enforcing Part B of the Individuals with Disabilities Education Act (IDEA) law, which was reauthorized by Congress. Tourette Syndrome (TS) is now listed as a disability under the category of Other Health Impaired (OHI). This new categorization is the result of over two decades of vigorous advocating for this classification by the national Tourette Syndrome Association (TSA). The announcement was made today by the U.S. Secretary of Education, Margaret Spellings, in Washington, D.C. at an invitation-only public announcement meeting.

“This is a tremendous victory for children with TS,” said Monte Redman, TSA’s Chairman of the Board, “allowing them to become socially and academically successful, ensuring that they reach their full potential.”

TSA, through its unyielding efforts, has been steadfast in lobbying for this designation. The Association has held hundreds of meetings on Capitol Hill, with the Department of Education and with the office of the First Lady Laura Bush, and over the years members have sent thousands of letters to Congress explaining the necessity and value of having TS listed under OHI. Additionally, TSA members—parents, children and teens with TS—participated in the Department of Education’s public hearings, making personal, heartfelt statements demonstrating how the OHI designation would improve the education of these children.

Travis Stecher, 18, recipient of The TSA 2005 Outstanding Youth Achievement Award, spoke so passionately before the Department of Education during a California hearing in July 2005 that they interrupted the hearing to specially acknowledge his testimony.

In her overview of the new regulations, Secretary Spellings specifically acknowledged Tourette Syndrome as an example of one of the changes that were made, pointing out that TS is a neurological disorder, not a behavioral issue.

"One set of comments can change the way the federal government serves the people," Troy Justesen, the Deputy Assistant Secretary of the Department of Education said.

Judit Ungar, TSA President along with TSA Board Member, Nancy Baker, and her 11-year-old daughter, Jackie, attended the private meeting to report back to TSA members about the new classification, the direct result of their unwavering support and campaigning for this regulatory change.

Jackie Baker, 11 years old, has spoken numerous times before Congress and testified before the Department of Education. “Thank you so much for making it clear that Tourette Syndrome is a neurological disorder and not a behavioral one,” she said today in Washington D.C., after the announcement was made.

The IDEA classification category frequently dictates the classroom placement, services provided and behavioral intervention plan.  Many educators, however, continue to erroneously see TS as a behavioral or conduct disorder because of the nature of its symptoms and therefore classify these children under the Emotionally Disturbed (ED) category. This incorrect classification frequently results in students being placed in programs that are designed for students with emotional disorders where bullying and teasing generally increase as does the punishment for their symptoms. Now that TS is appropriately listed under the category of OHI, students with TS will be given fair treatment under their condition.

“For many students this classification under OHI results in appropriate services that make it possible for children with TS to remain in a general education setting,” said Judit Ungar. “For some students with significant symptoms, this classification may eliminate the necessity for costly residential placements.”

“We want to express our deep appreciation to our members and constituents who have participated in action alerts and in other government advocacy campaigns. Your voice has been heard and you have made a difference,” said Monte Redman.