WASHINGTON — Children who were once the pariahs of the public school system are gaining access to regular classrooms in record numbers. Many that would have spent their childhood warehoused in an institution are going on to college or finding jobs.
But the cost of educating children with disabilities is $36 billion a year - and soaring. The federal government picks up only about 7 percent of that cost, leaving the rest to states and school districts with sharply different abilities to pay.
Even for a prosperous communities, the tab can be daunting. Recently, the small town of Carlisle in eastern Massachusetts learned that it would need to make $100,000 in structural changes to its school to accommodate a new student with special needs. The town can't raise taxes, because of a ceiling on tax hikes. For now, it looks as if students will still have to use 20-year-old math books.
"Should that child be here? Absolutely! A community includes everyone," says Carlisle superintendent Davida Fox-Melanson. "Do I know where I'm going to come up with that $100,000? Not at the moment. It looks like I'm going to have to seek foundation support for that wonderfully cutting-edge project of replacing algebra books that are falling apart."
For most of the history of US public education, school districts turned away students with disabilities. Some argued that a wheelchair is a fire hazard; others, that students with learning disabilities would be better off in an institution, even though most failed to educate children. Some parents worried that their children would be uncomfortable next to a child with a disability or that schools would lower standards to accommodate special-ed students.
But since the landmark Individuals With Disabilities Education Act (IDEA) in 1975, school districts are required to provide a "free appropriate education" to all children, including those labeled as having significant physical or emotional disabilities. IDEA was reauthorized last year, and the Department of Education expects to complete the final regulations to implement it this month.
Factors driving the cost spiral include an increase in the number of economically and medically at-risk students, and the health costs associated with their care. State officials describe the new law as "woefully underfunded" and complain that Washington has reneged on a promise to cover 40 percent of the costs.
"If the federal government actually lived up to its funding criteria, it would owe Florida $300 million annually," says Frank Brogan, Florida's education commissioner. He and other state officials back a $9.3 billion congressional proposal to fully fund IDEA.
The unpredictable costs of providing special education are also giving pause to those aiming to start experimental charter schools. "Schools that want to make the leap to charter status are reluctant because of the unknowns around special education," says Eric Premack, director of the charter-schools project at the Institute for Education Reform in Sacramento, Calif.
Despite funding concerns, many educators credit the law with improving the quality of general education by focusing attention on each child's potential for progress.
Take one of the toughest venues for a child with disabilities: the school gym. Instead of automatically excusing the child in a wheelchair from gym class, schools are adapting to include them.
"When you create more diversity, you're going to force teachers to realize that there are lots of kids who benefit from modification," says Martin Block, who directs adapted physical-education teacher training at the University of Virginia's Curry School of Education in Charlottesville.
The movement also launched a generation of intensely involved parent activists who are becoming a model for parent involvement. "If all the parents in my school were as committed to their children's education as the parents of children with disabilities, we'd have one of the best schools in the country," says John Jordan, superintendent of schools in Oxford, Miss.
"The concept of IDEA has been empowering for parents of children with and without disabilities, at least for those who study the law and see its implications," says Stanley Herr, professor of law at the University of Maryland and president of the American Association on Mental Retardation.
The key to using the new law effectively is for parents to rid themselves of the view that children with disabilities can't make significant progress - and to closely monitor what goes on in schools, activists say.
"We still hear teachers say, 'Not in my class!' when asked to provide accommodations such as oral testing for children with disabilities," says Linda Coe, a parent in Lake Forest, Ill. "It takes a long time to become knowledgeable."
One of the biggest challenges is to make sure that teachers do not lower expectations, rather than find appropriate alternatives to help children meet high standards. Many students may need only small adjustments, they argue.
"I thought that my son was qualified for algebra because he was getting all As and B-pluses," adds Mrs. Coe. "But then I was told that they'd been giving him an 'altered curriculum ... because he is learning disabled.' I said, 'Yes, but not in math!' "
"At first, you put your faith in experts. The school told us that our son's IQ was 71, and that he was doomed. But we found out that they had given him a written test - and reading was his disability," says Deborah Dillon, also from Lake Forest. "Now he has just finished his Eagle Scout project."
From the start, IDEA required schools to set goals for children with disabilities, develop individualized programs, and meet annually with parents to assess progress.
The 1997 legislation gave parents new rights to receive regular notice of their children's programs and progress, and to be reimbursed for the costs of private placements if necessary.
One controversial provision in the new law requires that schools provide services to special-ed students who have been suspended for more than 10 days or expelled. This conflicts with "zero tolerance" rules in some states, but activists insist that it is needed to prevent schools from using suspensions as a way to get rid of special-ed students. Children with disabilities will also participate in state and districtwide assessments, prompting concern that poor special-ed scores will lower school averages.
"Some states still don't want to test these children," says Kathleen Boundy, co-director of the Center for Law and Education, an advocacy group for low-income children. "But unless we know how kids with disabilities are performing, we can never hold them to higher standards."
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Things to Keep in Mind When Dealing With Schools
Parents of children with disabilities have learned to aggressively defend their child's education. Their suggestions can be helpful to parents of children achieving at all levels.
* Know the law. A school administrator who says that their school has no responsibility for the education of students with disabilities is misinformed. For further information, contact the National Information Center for Children and Youth with Disabilities (NICHCY) - (800) 695-0285, or e-mail email@example.com. Find them at www.nichcy.org on the Web.
* In discussions with teachers, don't be bogged down by the labels of disability. The point is to identify how every child can achieve high standards.
* If you do not want the school to evaluate your child for special-education services, just say no - and put it in writing. In cases of disagreement, either the school or the parents can call for a hearing with a neutral decisionmaker.
* Most states have adopted state standards for each grade. Make sure that your child's program lines up.
* Meet regularly with school staff. Educators say that they meet often with parents whose kids are achieving at the top and at the bottom end of the spectrum. Don't skip parent-teacher meetings just because your child is doing OK in the middle.
* Find support. "It's really hard to go it alone against a school district," says Arlene Mayerson, attorney with the Disability Rights Education and Defense Fund.