Stories

Partners in Policy Making: One Family Makes a Difference
By Jeanne bowman, Matrix Technical Alliance Coordinator

On June 22, 2005 in Sacramento, in a stifling school multipurpose room, I witnessed something that touched my heart and many others. I attended public comment sessions on the notice of proposed rule making for IDEA 2004 regulations. Assistance Secretary Troy Justensen himself was there to listen. Individuals spoke from the National Association of Special Education Directors, the California Teachers Association, the National Association for School Psychologists, the California Association of Resource Teachers and dozens of representatives of other national and state groups to give their input on the reauthorization of IDEA 2004.

What I will always remember is the team representing families with children with Tourette Syndrome. The parent spoke first, as a resource teacher, mother and member of the Tourette Syndrome Association. She spoke of the confusion that could be clarified if Tourette syndrome were listed, explicitly, under the other health impaired category. Next, her son spoke, representing himself and the national Tourette Syndrome association. He spoke of the accommodations that supported his success in graduating high school, and of how those little boosts from teachers made a big difference for him. This was the first time that the strict timekeeping and professional decorum of the presentations was waved. Assistant Secretary Justensen wanted to know more about this student’s life – what happened after graduation? Did he have a job? How is college going? What are your hopes for the future? There was a real personal connection here. The closing comment to this side bar was a promise –“Young man I want you to remember this day. it is not everyday that you change the world. That’s what you are doing there - look when these regulations come out again.” When the regulations came to my desk last week (August 2006) the first thing I looked at was the definition of “other health impairment” in Sec. 300.8(c)(9)(i) it has been changed to include “Tourette Syndrome '' to the list of chronic or acute health problems. Thanks and kudos to Travis and Sunni Stecher.