Victory for children with Tourette syndrome

Aug 3 2006

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.

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.

"For many students this classification under OHI will result in appropriate services making 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."

Marked by involuntary twitching and vocal tics, TS is an inherited condition frequently misunderstood and misdiagnosed, affecting more than 200,000 Americans. Founded in 1972, the TSA has a three-pronged mission of education, research and service and directs a network of 31 chapters and more than 150 support groups across the country.

http://www.tsa-usa.org/