Article

Families say that inclusion will leave autistic behind
Monday, October 09, 2006 • BY JOHN MOONEY • Star-Ledger Staff

Ten years ago, Brian and Sandy Epstein made a desperate cross-country move to New Jersey in a bid for improved schooling for their autistic son, Brandon.

It wasn't West Windsor's own special-education program, however, that brought the family from Oregon. Rather, it was the specialized schools nearby where they knew their son would be sent.

Brandon, 15, now attends Academy Learning Center in Monroe, a 10-acre campus for 140 autistic and multiply challenged children operated by the Middlesex County Educational Services Commission. And like the other students, his hefty tuition is paid by the local district.

"We were down to our last $1,000 and said we couldn't do it any more (in Oregon), so we took Brandon to the best program that existed for him," said Brian Epstein, a Manhattan clothing designer.

"We feel so lucky to live in New Jersey," the father said, choking up. "We feel so blessed that we live here."

The Epsteins reflect a heart-wrenching side in New Jersey's protracted public conversation over where to educate children with disabilities -- an already volatile debate that is being exacerbated as state lawmakers take a hard look at education costs.

With nearly 200 private and public specialized schools to choose from, New Jersey has 20,000 students in the separate settings, close to 9 percent of its special-education population and by far the nation's highest rate. This despite years of concerted effort and state mandates designed to bring students back to local districts, where they would be educated alongside nonspecial-education students.

Now, the state is stepping up the pressure on several fronts, including a pledge to the federal government to bring 4,000 children into in-district programs by 2010. Gov. Jon Corzine included nearly $20 million in the state budget that districts could use to initiate programs meant to keep special-education students in their local schools.

The topic also is being raised as Corzine and lawmakers grapple with school-funding reform. Last year, according to data provided a state advisory committee over the summer, more than $850 million was spent on tuition for out-of-district placements -- more than a quarter of the $3.3 billion spent on special education overall.

"If we can do a better job at keeping kids within their districts, it's going to keep our costs down," said state Sen. John Adler (D-Camden), who co-chairs a special school-funding panel that has spent two hearings so far on special education alone.

But with federal and state law dictating each disabled child's education be individually determined, families like the Epsteins are testament to the challenge in telling parents what is best for their child -- especially when the parents feel they know otherwise.

The emotion was on display last month when parents filled a New Brunswick hearing room to press Middlesex County freeholders to move ahead with a new special-education school in Sayreville and the renovation and expansion of another in Piscataway.

One tearful parent after another spoke of the better care and attention their children received in separate schools within the Middlesex County system. And they had harsh words for traditional public schools.

"Integration, while looking great on paper, we didn't see it," said Dawn Fellerman of Piscataway, who has an autistic child now in a Middlesex program. "Children like my son will never fit into an integrated program."

The freeholders would go on to unanimously approve the $40 million project, but not before they heard some weighty opposition.

In one of his first forays into public policy debate, state Public Advocate Ronald Chen wrote the freeholders that such placements fly in the face of research and law that supports the "least restrictive environment" for children in special education.

"Separate is not equal, and special education cannot continue to be viewed as a separate system of educational care," Chen wrote.

The Epsteins were in the crowd, Brandon sitting between his parents and needing his mother's frequent touch to keep him from bounding out of his seat. The family hugged when the vote was counted.

The father afterward said inclusion might be appropriate for many children, just not his. Brandon would remain seated about a minute, his father said, even with a constant aide, before getting up and disrupting the class. It took Brandon five years to learn to hold a pencil, let alone write a letter.

"They are trying to put us all in the same box (of inclusion), when our son doesn't fit in that box," Epstein said.

It's not hard to see the attraction of the Academy Learning Center, a half-hour bus ride for Brandon every day. In a modern, sun-filled building with almost as many staff as students, there are full therapy rooms and a slew of vocational and life-skills programs. A row of elaborate wheelchairs lines one wall.

The school's program costs taxpayers between $33,000 and $36,000 per student, depending on the disability.

In a "daily living" class, four teachers and aides worked with a dozen boys and girls with cognitive disabilities in cleaning up after themselves, at one point tossing socks and hangers onto the floor for the students to pick up.

"A number of these kids could do well (in their home schools), no doubt," said Eric Solberg, the school's principal. "We have several who do go back on a part-time basis. But many of their families also feel their districts wouldn't meet the needs in the same way we can. ... Right now there is a large demand for our services."

Dozens of local districts have programs for more severely disabled children, both in the mainstream classrooms and in separate specialized programs within the school. But most everyone in the debate concedes more could be done.

At one legislative hearing last week on special education, one of inclusion's top advocates didn't blame parents for advocating special schools.

"It's much easier to put your child on a bus and send them to a place that at least welcomes them, even if it means that they spend two hours a day on a bus and never see a child without a disability," said Diana Autin, co-director of State Parent Advocacy Network. "

"But few parents would choose to put their children on a bus for that long ride if they felt that their local school has the knowledge, expertise and desire to effectively educate their child," she said.

State efforts to rein in the numbers have had limited effect. Two years ago, the state put a moratorium on new separate schools to give it time to better review the needs of districts and families.

A tougher application process for new schools emerged, although another six private schools that previously were approved opened in the last two years, according to the state. Four new public programs, including the two in Middlesex, also have been approved.

Now the state will crack down through a tougher monitoring process that will red-flag school districts with high rates of out-of-district placements.

State officials agree some students are best served in separate settings, but not to the degree they are seeing.

"If we can get some of these kids back in the district, we can open up space in these schools for those who really need them," said Barbara Gantwerk, the acting state assistant commissioner overseeing special education.

The high cost of special education

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