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Autism advocates discussed the need to provide high-quality services to students with autism in urban areas at a panel discussion at Seton Hall Law School in Newark.
Sponsored by the Urban Education Law & Policy Initiative, the panel featured Assemblywoman Grace Spencer, autism advocate Michele Adubato, legal disabilities expert Paul Prior, Jersey City School Board member Suzanne Mack and Kim Williams, the parent of a child with autism.
"New Jersey has an abundance of services -- more than any other part of the country," said Lonegan, who has a 12-year old son with autism. "A lot of people move to New Jersey because of the services we have."
But Lonegan said he was driven to explore the issue of services for urban children with autism when he discovered seemingly contradictory statistics.
He said Essex County, a primarily urban county that includes Newark, Orange, East Orange and Irvington, is ranked fifth by the state Department of Health and Senior Services for the number of autism incidents. Yet the Department of Education statistics showed Essex County was ranked below average for the number of students classified and receiving services.
"How can a county with such a high rate of autism have a below average rate of classification," he asked.
Adubato, the deputy executive director of The North Ward Center and the head of its Center for Autism, said child study teams in urban areas have pressure put on them not to diagnose.
"We have an epidemic, but it's not autism, it's the way we deal with autism," said Adubato, who worked in the Newark Public School system for two decades, most recently as the vice principal of the New Jersey Regional Day School, which serves children with autism spectrum disorders and pervasive developmental delays.
Adubato said she left Newark Public Schools because she wanted to apply The North Ward Center model of excellence and bring that to the autism community. "We need to help people with autism and that's what we're going to do at the Center for Autism," she said.
Williams, whose 19-year old daughter Tahira has autism, said in many cases, the only time she can get services is when her family is in crisis. Tahira was first diagnosed when she was four, and classified at 5. But Tahira's behavioral issues made it difficult to keep her in school. Williams said she thought her daughter was going to have to be home schooled until she discovered New Jersey Regional Day School.
Prior, who specializes in disabilities law as a partner at Hinkle, Fingles & Prior in Lawrenceville, said parents often come to him when things are not going well.
"Families who have autism feel powerless," said Prior, whose older brother has autism. "While the system has safeguards, parents still have an inherent feeling of powerlessness."
He said parents going before a child study team often just accept what the school system tells them.
"You don't have to take what the district says as truth," he advised. "Long term planning is not an IEP (Individualized Education Plan). It's what's going to happen when the school bus stops coming. What's the person going to be like when he or she is an adult."
Adubato said one of her goals is to teach parents how to be advocates for their children.
Mack said she ran for the Jersey City Board of Education because her son, who is on the autism spectrum, wasn't getting services. She said Seton Hall Law School could help parents of children with autism by working as their advocates.
Lonegan said Seton Hall Law School is considering a clinic to serve families with autism.
Spencer, whose district includes Newark, said in urban areas, there is a breakdown in communication(s) about the type of services that are available.
"We are still behind in letting everyone know we have these services," said Spencer, who co-sponsored legislation signed into law last year requiring insurers to cover treatments for autism and other developmental disabilities and was the primary sponsor of legislation, signed into law last earlier this year, prohibiting discrimination against people with autism spectrum disorders. "It can no longer be ignored the way it has been."
