Upon receiving his diagnosis, Sander began seeing an OT who specializes in SPD twice a week, as well as a Special Education Itinerant Teacher (SEIT) who shadows him in his classroom.
In order to get financial support, Braun has to tap dance around the real issue. "The committee for Special Education does not recognize Sensory Processing Disorder as a diagnosis," says Braun. "I have to go through a whole certification process, and if I don't follow up in a certain amount of time, they deny it. It's frustrating because it's quite expensive. It's terrible because we are trying to help a child, and we aren't getting the help we need to help a child."
To help patients get insurance reimbursement, SPD-focused occupational therapists are accustomed to coding the symptoms without coming clean about the overall problem. "If we call it OT and diagnose it as a feeding disorder, ADHD or a coordination disorder, insurance will cover it half the time," confirms Dr. Miller. "If you call it SPD, it's the kiss of death. It's a total game."
Dr. Miller is spearheading an attempt to legitimize SPD with an entry into the psych bible, the next Diagnostic and Statistics Manual publication due in 2012. This would make insurance issues for families like Braun's a thing of the past. It would also help the STAR Center grow. "It's hard to get funding for research because it's not in the DSM, but we can't get in the DSM without the research," says Dr. Miller. "It's a catch-22."
Meanwhile, there is a societal cost to increased attention to children's disabilities. In the past few years, the number of children receiving special services has risen remarkably. During a recent SPD awareness meeting at my son's school, the guest occupational therapists casually mentioned that the number of kids receiving OT services in New York City has leapt from roughly 8,000 to 38,000 over the past decade.
"If you call it SPD, it's the kiss of death."
That trend is mirrored nationally. According to a U.S. Department of Education report, between 1991 and 2001, the number of five-year-olds receiving special services increased 30.7 percent; the number of four-year-olds served increased 75.9 percent; and the number of three-year-olds receiving special services increased 93.6 percent.
That's a lot of ball pits. And according to a 2007 New York Times article on SPD, not all parents feel that OT helped their children any more than extra recess would have.
Many parents, like Evans, feel that the diagnosis and OT have made all the difference in their lives. "My biggest regret is that no one made me aware of SPD years ago," she says. "Dealing with this has been one of the most difficult things in my life. He's lost so much time in school because he refused to do any work and was having breakdowns. And there's no way to get that time back."
Either way, if Dr. Miller's estimation holds true, taking your kids to the sensory gym may soon be as commonplace as taking them to the playground.
