By Rep. Thomas Murt
With budget season underway in Harrisburg, many departments, agencies and interest groups are competing for the commonwealth’s finite resources. One line item in the budget that I follow closely each year is the very nominal appropriation the commonwealth puts toward Tourette’s syndrome. In the first draft of the 2020-21 budget, the designated amount for Tourette’s syndrome has been totally eliminated. Eliminating this funding is cruel and does a great disservice to families struggling with Tourette’s syndrome.
The small allocation we give for Tourette’s syndrome is critical to help families fight for educational benefits for their children who have Tourette’s syndrome and to increase awareness. Through consistent but fair funding for the Tourette’s Syndrome Alliance, we can focus on empowering families to obtain the programs, services and supports that a child with Tourette’s syndrome needs to be successful in their school.
According to the CDC, it is estimated that 1 in 162 children struggle with Tourette’s syndrome. Many of the onset symptoms of Tourette’s syndrome appear before the age of 18 years old, with most individuals being diagnosed when they are ages 6 to 10. Only 1 in 360 children actually receive an official diagnosis of Tourette’s syndrome. Since Tourette’s is widely under-diagnosed, many individuals and families are unaware of the resources and treatment options available. Tourette’s syndrome is diagnosed based on the presence of motor and vocal tics over the course of a year.
Tourette’s is a neurological and behavioral syndrome identified by involuntary sudden movements or vocalizations that occur in a repetitive manner. These unintentional occurrences are known as tics, in the form of motor, meaning body movements or vocal, through sounds. The tics can be simplistic or complex. Simple tics can include eye movements, facial twitches, slight jolting of the head or shoulders, repetitive throat clearing and making inaudible noises. Complex tics are combinations of body movements and vocalized words or phrases. Individuals suffering from Tourette’s syndrome can experience these tics multiple times a day that vary in degree of duration and severity.
The symptoms of Tourette’s can occur, disappear and reappear based on situational or psychological influences. When a person with Tourette’s is calm, they have better control of their motor and/or vocal tics. In some cases, medications have been prescribed to help alleviate the symptoms of the condition, however, most people affected by Tourette’s syndrome utilize behavioral treatments to manage their tics. In times of duress or excitement, the tics can be difficult to control. Through treatment, practice, encouragement and support, it is possible to manage symptoms of Tourette’s syndrome.
It is especially frustrating for individuals living with this condition and their families because there is no known cure for Tourette’s syndrome. Tourette’s syndrome is a multifaceted disorder and can often involve other related, underlying conditions such as ADD/ADHD and OCD. These additional diagnoses can make day-to-day learning and working situations difficult for those dealing with the symptoms of Tourette’s syndrome. It is unclear of the exact cause of Tourette’s syndrome; however, it is understood by the medical community that the condition is a genetic disorder.
I have already taken the liberty of contacting both the majority and minority chairmen of the Appropriations Committee to stress the importance of this appropriation to families who struggle with Tourette’s syndrome. My request of a restoration and increase of funding is crucial to continue the work involved with advocating for additional resources, educational opportunities and treatment programs for individuals living with Tourette’s syndrome. It is my hope that with funding, Tourette’s syndrome can be more appropriately diagnosed, treated and managed within our communities, and more broadly, across our commonwealth. The appropriation will also help families who cannot afford legal counsel to help them through due process with their school district. Please contact your elected officials and ask them to support this important appropriation. ••
Rep. Thomas Murt represents the 152nd Legislative District, which includes portions of Bustleton and eastern Montgomery County.