Tourette Advocates:
A “Little” Budget Cut Could Bleed Us Dry
BY JOHN MOONEY
Star-Ledger Staff
It’s one line in the state budget book, about halfway down a list of grants being cut in Gov. Jon Corzine’s controversial spending plan for next year.
Tourette Syndrome Association of New Jersey: – $1.25million.
The cut would essentially wipe out the association’s budget for training, support and research programs.
Without the money, the group would certainly have to cut its staff and would have to eliminate many, if not all, of its programs, said Faith Rice, the association’s director and the mother of a child with the disorder that is marked by involuntary verbal outbursts and physical tics.
But along with dozens of other groups, the association will be on a long line for help at the Statehouse door, as Corzine and legislators hammer out the final budget in the coming weeks.
The list of victims in Corzine’s budget ranges from Weehawken Arts ($250,000 cut) to the Newark Museum ($2.5 million). In all, the cuts for community groups and programs total close to $30 million. The cuts may only be a fraction of the state’s proposed $30.9 billion budget, but can be catastrophic for the groups affected.
As the number-crunching continues, these groups are in a holding pattern as they wait to see what happens.
“I don’t think about the competition too much. I can’t,” said Rice of the Tourette association, who has led a letter-writing campaign sending a half-dozen correspondences to every legislator.
“It’s all about what I can do to keep my own doors open and my programs in place,” she said.
The Tourette Syndrome Association has a paid staff of three and is not a big lobbying force in Trenton. Its budget overall may even be considered small change.
But like many of the other groups on the chopping block, there are countless faces and stories behind its programs. And for many of them, the budget hit feels almost personal.
David Brummer was diagnosed with Tourette Syndrome in fourth grade, after showing the symptoms of verbal and physical tics. Now 14, he is able to suppress them most of the time, but is reminded of the disorder every day.
“They put me in a separate room during tests, so I don’t distract anyone,” he said. “And of course, there’s the teasing and bullying. … It’s kind of a nuisance.”
Both the state and national associations have helped a lot, David said, including providing a speaker who talked about Tourette at his Livingston school last year and sending him to a weekend camp with others like himself. So when he had to come up with a service project for his bar mitzvah last year, he started selling rubber bracelets for $3 each that would go directly to the association.
Now the money can help during more dire times.
“The bracelets come in teal and blue-and-green,” David said. “And they say, ‘Free to be Me.'”
An estimated one in 200 schoolchildren show at least partial signs of Tourette Syndrome, which can range from severe verbal and physical contortions to milder tics that are barely recognizable.
It is sometimes best known for sudden outbursts of profanity, but that characteristic afflicts only about 5 percent of those identified as having the disorder, advocates say. Commonly, people with Tourette Syndrome also have other problems, such as obsessive compulsive disorder, learning disabilities or attention deficit disorder.
First formed in 1988, the state association serves as the umbrella for a wide range of programs available in the state, including medical research, parent support and teacher training.
Its most prolific program has been the workshops it sponsors for teachers who serve children with Tourette, with more than 30,000 New Jersey teachers trained in the last 10 years, according to the association.
At a recent workshop held at Middlesex County Community College, teachers spoke of the challenges in the classroom not only for the students with the disorder but also their classmates who may be easily distracted.
The association is also a partner with the New Jersey Center for Excellence for the Treatment of Tourette Syndrome and Associated Disorders, a program at Rutgers University that provides medical treatment, training and research.
Within the center, headed by noted Rutgers geneticist Jay Tischfield, will be the nation’s first repository of human tissue for Tourette Syndrome research.
Tischfield’s own 24-year-old son suffers from Tourette, and the professor said that after years of trying as a scientist to detach himself from the disorder, he now has committed to help address it. “Life’s too short,” Tischfield said recently.
But the repository requires about $100,000 that was to come from the association. Tischfield said he can make up some of the funding, but not all.
“We’ll do what we can, it’s just too important,” he said. “But I don’t know if the true impact was made clear to the governor.”
Corzine said this spring he would take another look at the grant, but his office stresses that the state’s budget crisis has forced cuts in many commendable programs.
Now in the Legislature, the budget will continue to be vetted. Small groups can be hurt from lack of high-profile support.
“But I think there is a lot of sympathy for them, too,” said Assembly Majority Leader Bonnie Watson Coleman (D-Mercer), head of the lower house’s budget committee. “A little money can go a long way.”
“This is a bad time, though,” she continued. “With the budget the way it is, there is very little discretion.”
For winners and losers, much will depend on who is on their side at the negotiating table in Trenton, and the Tourette association is looking for support from some heavy hitters.
State Senate President Richard Codey (D-Essex) is counted among its supporters, and as a former governor as well, Codey said recently how he’s come to realize what separates the worthy from the pork.
“Sure, some of these (grants) we can maybe take out,” Codey said. “But there are others that are worthwhile and provide vital services to our citizens. … Tourette is a condition that many people aren’t familiar with, but they need all the support we can give them.”
John Mooney covers education. He may be reached at jmooney@starledger.com or (973) 392-1548.