Parents fight to keep key autism therapy when kids enter NYC schools

Parents argue a one-on-one therapy approach to autism is the best method available for toddlers, and are taking their fight for it to court for thousands of children in New York City preschools and elementaries.

Applied Behavior Analysis, which breaks up tasks into small steps and teaches skills through rewards and repetition, is “the most well-researched and validated general approach to treatment for [Autism Spectrum Disorder],” officials from the state health department wrote. It’s administered frequently to 0-3-year-olds in the state’s Early Intervention system.

But after age three, thousands of kids -- many of whom thrive under the approach -- are suddenly forced to drop ABA in city preschools and elementary schools, , where it’s rarely offered, according to parents and advocates.

A group of parents has now filed a class action lawsuit against the city and state education departments charging the lack of ABA violates federal special education law.

“It’s devastating to see these families desperate, to hear the stories of regression, and to know that it was clearly preventable,” said Elisa Hyman, the special education lawyer representing the families in the lawsuit.

“In my view, it’s blatantly illegal for the department to adopt a blanket policy whereby it refuses to consider, or provide, ABA services,” Hyman added.

Education Department officials acknowledged they don’t include ABA on individual education plans, which are the legal documents that govern special education services, though they’ve added programs across the city that use the approach.

“We’re committed to making sure our students get the services they need and we have added and expanded our special education programs that employ Applied Behavior Analysis in the past two years,” said Education Department spokeswoman Danielle Filson.

The agency also started a pilot to smooth the transition from early intervention to preschool for kids with disabilities, Filson said.

A crisis in services for city kids with autism has been mounting as the number of diagnoses has skyrocketed. In 2007, about 7,000 city students were classified as autistic, according to court papers. Last year, the number was over 20,000, according to Education Department data.

Another 8,500 toddlers diagnosed with autism got support through the city’s early intervention program last school year, state officials said. But the approach state officials have taken to treating their youngest charges contrasts sharply with what happens when they arrive in school.

The majority of autistic toddlers in Early Intervention end up receiving ABA therapy, said Peri Seshens, who ran an early intervention program and now has her own ABA company, adding: “We have decades and decades of research that shows what we do is effective."

Parents like Jessica Montgomery saw the therapy’s impact close up: Her son Mason got \\20 hours of ABA therapy every week through the early intervention program as a toddler.

"My son made such incredible gains,” Montgomery recalled. Mason went from not being able to swallow food to feeding himself and communicating his needs by pointing to pictures.

Montgomery knew she wanted her son to continue with ABA in preschool, but when she met with the city special education panel that decides which services Mason gets in his public preschool, officials told her it wasn’t an option.

“Within a month of being in the school and losing the ABA, it was a complete disaster,” she said. “He started scratching others, biting his hands to the point of bleeding.”

Montgomery tried to find an ABA therapist through her private insurance but learned she’d have to wait months and pay a deductible. Meanwhile, Mason’s condition continued to deteriorate. He was so anxious that he didn’t sleep for three straight days.

“It was literally heart-wrenching,” Montgomery said. “As a parent you feel helpless. We’ve done everything we can do on our end. It’s like constantly hitting a wall.”

Montgomery isn’t alone -- Hyman said she’s worked with scores of families whose kids thrived with ABA in early intervention only to have the support suddenly yanked when school begins.

Some turn to private ABA therapists, others sue the city in the hopes a special education judge will force the Education Department to offer the therapy. Others don’t know they have any legal recourse, Hyman said.

“Everybody is told your ABA services are going to stop, and nobody even realizes they can challenge that for their individual child, and they often don’t find out until years later, or never," Hyman said.

City officials say they offer a range of other services for kids with autism, including reduced class sizes, speech and occupational therapy, and sometimes paraprofessionals to work one-on-one with students.

Education Department officials said they follow state guidelines about what services are acceptable on an individual special education plan, and said they can’t commit to specific “instructional methodologies” like ABA.

For Montgomery, ABA was important enough that she decided to sue the city for leaving it out of Mason’s special education plan. As a result, some of Mason’s ABA services have been restored.

“ABA needs to continue,” she said. “Parents are left to fight for what should be a necessity.”

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