May 6, 2000

Copyright 2000 The New York Times Company

High Rewards and High Costs as States Draw Autistic Pupils
By IVER PETERSON

EST WINDSOR, N.J., May 5 -- One family came from India, others from Greece, Italy and Israel. An Australian family is thinking about coming. Compared with those migrants, Rob and Anne Mandel had it pretty easy, giving up his medical practice and a life they loved in Indiana to get their son, Sam, the help he needed in New Jersey.

Sam is autistic, and his parents' move made the Mandels part of a phenomenon in which families, desperate for the most sophisticated
special education for their disabled children, have moved from other states and even other nations in search of care. But, increasingly, the needs of parents with autistic children are clashing with the bottom lines of school districts that have to pay for enormously expensive services -- often more than $40,000 per child per year -- for students who may never set foot in district classrooms, sent
instead to private institutions at the public schools' expense.

Most districts are sympathetic to the needs of families, increasingly armed with sophisticated knowledge about programs and treatments, who uproot themselves to get their children the best care. But many districts, particularly in states like New Jersey with programs that are magnets for families around the country and the world, say public schools are bearing too much of the cost with too little control over which children get what care.

"It's driving the suburban school districts crazy," said James H. Lytle, the superintendent of Trenton's public schools. "If you have eight kids who need to go to a special school, you have to go to your taxpayers for $400,000. That's essentially like sending them all to Andover.

Dr. Lytle added, "I hate the whole thing."

A 1975 federal law, the Individuals With Disabilities Education Act, guarantees a "free and appropriate public education" for all disabled students. But the education available in most places cannot compare with what is offered in states like New Jersey, Massachusetts and Pennsylvania, which have the most sophisticated private programs for treating autism. So families, many of whom share information on the Internet, are increasingly relocating to those states.

So while total school enrollment in New Jersey grew by 11.8 percent from 1991 to 1997, the most recent year for which comparable figures are available, and the number of disabled students increased by 14 percent, the number of autistic children registered increased sevenfold, to 1,634 from 234.

Part of the increase may be due to better diagnoses or the inclusion of children with behaviors that resemble autism. But migration obviously plays a major role. "If you're a parent of a child that has been diagnosed with something like autism, you are not going to wait," said Gary S. Mayerson, a New York lawyer who specializes in representing families battling school districts over care for disabled children. "You are going to look at your beautiful house and realize that it is a noose around your neck. So people are moving all over the country to get to states that are most responsive to their child's needs."

The treatment most in demand for autism is a method known as applied behavioral analysis, a form of highly structured and very expensive one-on-one coaching by trained teachers. While other treatments try to help youngsters cope with their disabilities, applied behavioral analysis, administered at an early age, offers children the possibility of eventually being able to attend regular classes, its advocates say.

So parents flock to the Princeton Child Development Institute, where Sam Mandel and 34 other students are enrolled, or the Eden
Institute, here in West Windsor, or to the Martin C. Barell School, in Levittown, N.Y.

And they go to the Connecticut Center for Child Development in Milford, where a couple from India showed up with their child earlier this month, hoping in vain to gain enrollment even though the school was full, said Suzanne Letso, the school's director.

Dr. Mandel said that at first he did not see the special allure of New Jersey.

"I sent people to have sophisticated tests all the time in Indiana." For that reason, he said, "I thought there was no reason to be closer to New York City to get these sophisticated services for Sam. But you know what? There's nothing back there like what we have here."

For $46,024.20 per year, the Princeton institute provides 10 months of intensive training to help autistic children discover a sense of the rewards of learning that they were born without. Although they may be capable of brilliant feats of intellect -- think of Dustin Hoffman's character in "Rain Man" -- autistic children totally lack both curiosity about the world and the instinct to learn by imitating other children and adults.

Patricia Krantz, director of the Princeton institute, said that half the children who come to her school early enough are sent to regular classrooms within five years.
If people object to paying something like $200,000 to achieve that, she said, they should think of the alternative -- a lifetime of institutionalization, "not to mention the human cost."

Sam Mandel is making spectacular progress, his parents say. But for every winner like him, the huge expense of special education programs and the scarcity of places at the most sought-after schools also create losers. Only a comparative handful of autistic children get into the best private programs, and they tend to be the children of parents with careers that permit them to move from state to state and from country to country to seek out those programs.

An engineer in India, for example, researched his child's disability over the Internet and pinpointed Lawrence Township as a good place for treatment, said Terry Rosenfeld, Lawrence's director of special education. Then he found a job at Bell Laboratories in Hopewell, secured the work papers to allow him to immigrate, and moved his family to Lawrence. Mr. Rosenfeld said eight severely handicapped children who have moved to the district to receive treatment were now enrolled.

"We definitely have parents moving in just for these services," said Susan DiDonato, director of special services for West Windsor-Plainsboro public schools. "Sometimes they call ahead and ask us what we have available."

But the migration and the legal requirements for "appropriate" education raise issues of cost and control.

"The parents' definition of appropriate and the district's definition of appropriate are often very different," Mr. Rosenfeld said. If the disagreement leads to litigation, "when you go to court, the courts often look at what parents are saying before they listen to us. And that is why, to me, I think the system is totally out of control." As Mr. Rosenfeld suggested, local schools want control over the assignment of students and their education plans, and generally favor local or county-based programs, typically at a local community college.

Parents say that the local programs, while cheaper, do not offer enough hours of training per week, let alone the benefits like home visits that places like the Princeton institute offer. The law requires the federal government to pay 40 percent of the cost of services provided under the education act. But state expenditures have run so far ahead of federal appropriations that the federal share has never risen above 8 percent in New Jersey, Mr. Rosenfeld said. The state, meanwhile, reimburses districts on a sliding scale, depending on the severity of the disability, but never more than $11,000
per child.

Some educators, in defense of the special-care migrants, say that parentswho relocate should be applauded for placing confidence in their new homes' school systems. "If anything, we should be proud that we are so successful," said Barbara Gantwerk, director of the Office of Special Education Programs at the New Jersey Department of Education.

Indeed, advocates for the children say, the problem is not what it costs to educate such children at the best treatment centers, but that too few children get that care. But Mr. Rosenfeld, at Lawrence public schools, said he was deeply discouraged by the drain that expensive treatments for a few children were imposing on other programs. "The parents will do absolutely anything for their children, and it's wonderful that these kids have such great advocates," Mr. Rosenfeld said. "But it costs a lot of money, and that money has to come from other programs."

And for families, everything is secondary to getting results for their children. So when Tim and Leslie Quinn of Charlotte, N.C., realized that their son Ryan, now 4, showed signs of autism, Mr. Quinn transferred to his company's headquarters in Hackettstown. The Quinns sold their dream house in Charlotte, took their two teenage daughters out of high school and moved to Belle Meade, in the Hillsborough school district, to enroll Ryan in the Princeton school. They have no regrets.

"Ryan has shocked us all," Mr. Quinn said. "Up until September he was not speaking and he was not doing a lot of things, and it was very discouraging. But then he started speaking, and he's doing very well."

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