Monday, Nov. 04, 1996

THE STRUGGLE TO PAY FOR SPECIAL ED.

By Sam Allis/Boston

Two years ago, the Maynard family of rural Union County, South Dakota, received a Christmas card that read, "A 1995 New Year's wish for you and your family: death and destruction." Since 1992, the family had been getting hate mail from their neighbors. At one point, the family's youngest son, Casey Maynard, then 5, was told by a preschool playmate that the Maynards' house was going to be burned down. "Mommy, why do they hate my brother?" he asked his mother.

His older brother Jonathan, now 21, is autistic and attends a private school in Connecticut. The annual tab, including as many as eight trips a year for his family to visit him, is about $125,000. And the cause of the community outrage was that the money for Jonathan's special education comes, under the legal requirements of the Individuals with Disabilities Education Act, from the budget of the local school district. There was an 80% increase in the school budget, a quarter of which accounted for Jonathan's special-education needs, causing property taxes to shoot up some 55% in 1992.

School board meetings were scary for the Maynards. "It was like walking into a Klan meeting," recalls Cathy Maynard, Jonathan's mother. "People we lived beside for generations will no longer talk to us. We didn't choose the role. We did what any good parents would do."

While the venom facing the Maynard family is rare, the conflict that spawned it is not. Federal and state laws require educational help for children with a wide range of physical, cognitive and emotional disabilities. But having passed the bills that mandate this help, Congress and state legislatures across the country have been parsimonious with the money to pay the added costs. This leaves the financial burden on the localities and produces intense conflict between parents and school officials.

Parents of special-ed. children, for example, often suspect that schools try to deny their kids the help they need, and to which they are legally entitled, in order to save money. School officials counter that onerous regulations force them to spend more time worrying about potential lawsuits than about education. They also fume at parents who solicit bogus diagnoses of learning disabilities so their children will get more attention.

"There is no fault," observes Dr. Melvin Levine, a North Carolina-based pediatrician and a nationally recognized expert on attention deficit disorder, one of the most common diagnoses requiring special help. "It's existential." Advances in medicine and psychology have vastly improved the identification of disabilities of all sorts in children. Technology is saving youngsters who 20 years ago would have perished at birth but today survive with profound learning problems. Children damaged by being born to drug-addicted mothers have added to the burden.

Last year 1 in 8 kids in the public school population, 5.4 million, were in special ed., up from 4.8 million five years earlier. In New York City the number of special-education kids has soared from 40,000 to 165,000 in the past two decades, even as total enrollment has declined by 100,000. Boston's special-ed. budget has almost doubled in the past eight years, from $65 million to $116 million, and now consumes almost a quarter of the total budget. Special-ed. spending nationally has doubled during the past 25 years to $30 billion, according to a yet unpublished report by the Washington-based Council for Educational Development and Research.

The federal special-ed. law enacted in 1975 was supposed to cover 40% of these costs. No such luck: last year the federal share of national spending for special education was a mere 7%. Every state now has its own special-ed. law as well, and support at that level varies. Massachusetts, which has one of the highest percentages of special-ed. students of any state in the country (11.1%), picked up only 17% of the costs last year. One way to reduce the burden, many believe, is to bring youngsters now taught in separate settings into regular classrooms. Under this inclusion approach, the special-education dollars follow the children. At Boston's Patrick O'Hearn Elementary School, for example, 20 of its 66 special-ed. children have significant handicaps that could gain them private placement. Yet they are taught in regular classrooms at great savings to taxpayers.

But inclusion is no fiscal panacea. O'Hearn principal William Henderson, himself legally blind, warns that it could be more expensive in the short run to carry out properly. Teachers must be retrained to work with special-ed. children, and additional staff will be needed to help. "Anything less is dumping," he says. Inclusion is also more manageable in elementary school, where the emphasis is on child development, than in high school, where students are judged by performance. "High school inclusion has little or no relevance in the lives of the severely disabled," says one high school special-ed. director in a Boston suburb. "The kids are often miserable because they have no friends except their tutors. I think parents are beginning to realize this."

Thomas Payzant, superintendent of the Boston school system, believes inclusion can be cost effective there only if he has control of the referrals for special-ed. evaluations now initiated by parents, teachers and other agencies. "We've gone from one extreme to the other in the last 25 years," says Payzant. "Now, if anything comes up, you refer the child. We have to get control of the front end, and we don't have that now."

Many referrals involve such learning disabilities as attention deficit disorder. North Carolina's Dr. Levine says that the methodology used is often "ridiculous" and that add misdiagnoses abound. Ultimately, he says, special ed. is a resource-allocation issue. "We have to be honest," he argues. "Why can't a community say, 'Long-term therapy works, but we can't afford it'?"

As special-education budgets mushroom, some experts are looking for ways to soften the mandates. Edward Moscovitch, author of Special Education, Good Intentions Gone Awry, has one proposal. "I would have an ironclad provision that if a child is making reasonable progress in school, he doesn't get special ed., regardless of the disabilities," he says.

The good news is that huge strides have been made to improve the plight of special-needs students. "The question now being asked is how can we do it, as opposed to should we do it," says Judith Heumann, U.S. Assistant Secretary of Special Education and Rehabilitative Services. The bad news is that the Maynards plan to move away from the farm that has been in their family for 120 years as soon as Jonathan has completed his program in Connecticut. "It's not getting better. We can't possibly bring him back," says Cathy Maynard. "We're lepers in our own community."

--With reporting by Julie Grace/Union County and Ann M. Simmons/Washington

With reporting by JULIE GRACE/UNION COUNTY AND ANN M. SIMMONS/WASHINGTON