N.J. autism aid getting a boost from state

Betsy Smetona of Haddon Heights quit her job last summer to stay home with her children.

Her 23-year-old twins, Megan and Michael, have graduated from the Bancroft School in Haddonfield and can't be left alone. Both have autism, although in different degrees.

"It's a big shock to the system when they graduate," Smetona said. "Their schooling was everything to them. It met their social and extracurricular needs. It's hard to find something in the community for Michael and Megan to do."

For the Smetonas and other New Jersey families in a similar situation, help could be on the way.

Gov. Corzine signed laws in 2007 and 2008 that are now taking effect to enable early diagnosis of autism, develop screening guidelines for physicians, create a statewide patient registry, and educate emergency responders to recognize developmental disabilities.

Among the most eagerly awaited components is enhancement to adult care. A task force meeting since June will wrap up its research with public forums next month, including one in Burlington County. It will make housing, employment, and transportation recommendations to the governor by June.

"Families and advocates were doing what government should have been doing," said Assembly Speaker Joseph J. Roberts Jr. (D., Camden), who championed the legislation.

Autism is a brain disorder that hinders social and communication skills and is often characterized by repetitive behaviors. It's usually diagnosed by age 3 and is more prevalent in boys than in girls. There is no cure.

New Jersey had the highest autism rate among 14 states in a 2007 Centers for Disease Control and Prevention study. Researchers found one in 94 New Jersey children on a spectrum of "barely noticeable to nearly debilitating," compared with one in 150 in the other states, including Pennsylvania.

To speed diagnosis and increase services, the Governor's Council for Medical Research and Treatment of Autism, funded by a $1 surcharge on motor-vehicle fines, has created six clinical enhancement centers, including the Center for Neurological and Neurodevelopmental Health in Voorhees.

Using novel technology such as Internet observation of patients in their classrooms and homes, the center, run by pediatric neurologist Mark Mintz, hopes to better use the state's scarce professional resources to treat toddlers through adults.

"People with autism have many talents that go overlooked because of what they can't do," said Daniel Keating, vice president for family services and government relations of Bancroft NeuroHealth in Haddonfield. "People with autism are very diverse. Primarily, we need to give people more choices."

Smetona said the difference in her children amazed her. Megan speaks clearly, enjoys reading, works part time cleaning a CVS store, and volunteers at the Markeim Art Center in Haddonfield. The more easygoing Michael talks "as little as he can get away with," his mother said. He continues vocational training at Bancroft's Jacob Schaefer Center in Cherry Hill, where he's learning to answer the phone.

"Jobs are hard to find, let alone jobs for kids like ours," Smetona said.

"We've done pretty well educating people" about autism over the last decade, said Holly Berlin, founder of the Voorhees Special Needs Association of Parents, whose son Jonah, 13, is autistic. "But there's been almost no attention paid to kids once they move past the youngster age."

Concerned parents frequently call the 40-year-old Autism New Jersey, formerly the Center for Outreach and Services for the Autism Community, seeking advice on job training, housing, and health care for their adult children.

"Kids have been getting $60,000 a year minimum worth of school services. Then it's gone," said Leslie Long, policy director for the nonprofit agency and an adult task force member. "A percentage will go on to college. Others can't be home alone."

Victoria Sweeney, senior program director for adult community services for Bancroft NeuroHealth, said providers were struggling to meet a rising need in New Jersey for day programs, out-of-home residential placements, and in-home support services.

"These issues are very common throughout the developmental-disabilities community, of which autism is one part," said Deborah Cohen, state task force chair.

Better diagnosis and treatment allow disabled children to live longer and healthier than in the past, said Cohen, who represents the state Department of Human Services. She expects the task force - which includes 13 public members and representatives of the state labor, health and education departments - to generate ideas to help families dealing with many conditions.

About 80 percent of adults with autism live with their families, Keating said, in part because of a shortage independent living options.

"We're looking at possible supervised living for Megan" and a group home someday for Michael, Smetona said, but the wait could be long.

"In New Jersey, we have not prepared for the long-term care component on this," said Assemblyman Louis Greenwald (D., Camden), citing 8,000 people on waiting lists for institutionalized adult care.

He has sponsored bills to shift money from New Jersey's seven institutions to group and home settings, but they'll be a hard sell in this economy, he said.

Chrissy Duman of Moorestown dreads her 13-year-old son's returning to waiting lists.

It took multiple doctor visits and much perseverance 10 years ago to get him a diagnosis of "pervasive developmental disorder, not otherwise specified," on the autism spectrum.

"At 18 months, we knew something was wrong," Duman said. "His pediatrician checked his hearing and suggested we wait six months and check again."

The state endowed the clinical enhancement centers this year, in part, to shorten waits for initial diagnosis, which average seven months nationally. At Children's Hospital of Philadelphia, the wait can be longer. Physicians agree that the earlier the treatment, the better the outcome.

The diagnosis of Duman's son came around age 3 from Mintz, then at Bancroft NeuroHealth, with help from the Mount Laurel School District, she said.

"For me, it felt like someone had turned on a light and showed me where to go," Duman said.

Her son has made "tremendous strides" through treatment for attention and sensory issues at Orchard Friends School in Riverton and Mintz's center in Voorhees.

Duman now worries about her son's transition to high school - and beyond, when his special-education funding ends.

"It's a lot scary," she said.

New Jersey's Adult Task Force on Autism will hold a public forum from 6 to 8 p.m. March 16 in Lecture Hall A of the Burlington County Human Services Facility, 795 Woodlane Rd., Mount Holly. For information, call 609-984-3351.

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