Reaction mixed to N.J. office on autism

Gov. Corzine's latest proposal to strengthen services for people with autism has families and advocates cheering, but experts in the wider developmental-disabilities community fear New Jersey is headed toward a two-tiered system favoring one diagnosis.

"Whenever you have 1 in 94 people being affected by anything, you need to get some special attention," said Linda Meyer, executive director of the advocacy group Autism New Jersey.

Autism is a lifelong disability characterized by limits in social interaction and in verbal and nonverbal communication, and unusual repetitive activities or severely limited interests.

At Autism New Jersey's annual convention last weekend, Corzine announced plans to open an Office of Autism Services within the state Department of Human Services, the top among 44 recommendations this month by New Jersey's Adults With Autism Task Force.

Other task-force ideas focused on improving housing, job training, education, transportation, and financial security for autistic people after age 21, when they age out of federal entitlements and school-based therapies. Some recommendations, such as creating a tax-free savings account akin to a 529 higher-education plan, would require legislative approval.

Thomas Baffuto, executive director of the ARC of New Jersey, praised the panel for raising the right issues but said, "It's very difficult for us when the solution focuses on one segment of the problem."

"Are the needs of an individual with Down syndrome or cerebral palsy different from the needs of an individual with autism?" asked Baffuto, whose organization has served people with intellectual and developmental disabilities, including autism, and their families for 60 years.

"We want folks with autism to get all the services they need, but setting up a separate office like that sets up a two-tiered system," he said.

Baffuto said he was also concerned about the state's limited resources in a difficult fiscal climate.

"There are 8,500 people on the waiting list for services. Why create another bureaucracy?" he said.

The task force's report says: "The recommendations made by the task force are directed to adults with ASD [autism spectrum disorder]. However, many of the recommendations could be applicable to other disabilities."

The 13-member panel deliberated for more than a year, holding six public hearings and reviewing more than 1,000 e-mailed suggestions. The report was released Oct. 8.

Adults with developmental disabilities often require extra help in college or the workplace, sometimes including hands-on coaches funded by the state, the task force learned. Parents wonder: After they die, who will care for their adult children, and will there be enough money?

Single mother Deborah Hill of Mount Laurel spends hours on the phone trying to arrange public transportation to get daughter Lauren, 21, to her part-time job at the Cherry Hill Target and classes at Burlington County College in Mount Laurel.

And since June, when Lauren graduated from a special-needs private school, Hill has been paying $75 a week for speech therapy formerly provided through the Lenape Regional High School District. Lauren has a diagnosis on the autism spectrum.

"It's a challenge. Sometimes you want to rest up," Hill said. "I wish I was independently wealthy so I could work part time and be there for her."

Autistic children risk losing the progress they've made communicating or socializing once the structure of school is gone, said Suzanne Buchanan, clinical services director of Autism New Jersey.

That's one of Hill's worries, so she takes Lauren to a weekly social group organized by parents of other adult children with autism.

Nationally, "autism is the disability that's getting the focus right now in a lot of sectors," said Barbara Trader, executive director of TASH, a Washington nonprofit that lobbies for equity and inclusion for people with disabilities. "But the entire disability community needs a lot more services."

Autism affects 1 in 100 children between ages 1 and 17, according to an estimate released this month by the Journal of Pediatrics. The Centers for Disease Control and Prevention has estimated New Jersey's prevalence at 1 in 94 children. Authorities say the statistics don't necessarily indicate a rise in incidence but could be the result of more accurate diagnosis.

Deborah Cohen, chair of the Adults With Autism Task Force, recalled a parallel in public health with HIV/AIDS. For a while, a lot of research grants and public funding went into that infectious disease, leaving others begging, she said.

That doesn't have to happen with developmental disabilities, she said.

"The task force's final recommendations have to do with aging and educating people," Cohen said. "People with autism don't age any differently than people with any other developmental disabilities."

The Department of Human Services already has a division of developmental disabilities; 23 percent of its clients have autism, she said.

"The absolute diagnosis is less important than their behavior and service needs," she said.

The decision to break out a special autism office "plays into the mythology that every disability is so different from every other that you can target services to one," said Diana Autin, codirector of the Statewide Parent Advocacy Network, which assists parents of at-risk children from birth to age 26.

"This year it's autism; next year it's something else," she said.

New Jersey Assembly Speaker Joseph J. Roberts Jr. (D., Camden) began championing autism when a 2007 CDC report identified New Jersey's highest-in-the-nation prevalence. Later that year, the Legislature passed a package of bills to provide millions of dollars for research and regional treatment centers; training for police, fire, and other emergency workers; and creation of the adult task force.

"We've been very successful in our advocacy," said Meyer, of Autism New Jersey. "Rising waters float all boats. . . . We tacked on other developmental disabilities. Why not?"

Over the summer, Corzine signed a bill requiring insurance companies to cover certain therapeutic services and behavioral interventions for autism. New Jersey's bill went beyond similar laws in Pennsylvania and other states by requiring coverage for other developmental disabilities as well.

Baffuto and others seek that breadth with future legislation and policy.

"What we don't want is people changing their child's diagnosis in order to get services," Baffuto said. "When it comes to supports and services, it has to be across the board."