Paying the price for integration
Inbar Leder, 17 from Yehud, clutches an imaginary microphone and sings hits by the pop star Ninette. She sings song after song passionately and knows almost all the words by heart.
"This is the power of living and learning in a regular environment and not in the special education framework," says her mother, Ilil, about her daughter who has Down Syndrome. "At school ceremonies, she stands there and sings in front of an audience of 400 people. Inbar would never have become this confident had she been cut off from a regular environment."
The integration of children with special needs into regular educational frameworks, or rather the funding of this integration, is at the center of a lawsuit filed by six parents, Leder among them, against the Education Ministry. The plaintiffs, all parents of children with autism or Down Syndrome, are suing the state for hundreds of thousands of shekels for each family, for reimbursement of their expenses for having their children attend regular schools. "The state was blatantly remiss in its duty to provide their children with free special education services, as stipulated by law," claims the suit.
The suit is currently being heard in Jerusalem District Court; the total funds at issue amount to NIS 2.5 million. But it's not just the money that's motivating the parents. They also harbor strong feelings toward the ministry's bureaucrats who have piled hardships in their way for years in their attempts to integrate their children into the regular school system. "We want to hurt the Education Ministry," says Malki Itzik, one of the plaintiffs in the suit. "They think solely according to budget allocations. There's money for special education, and no money for integration. Money can't be transferred from one area to another, one computer doesn't communicate with another, and no one has the guts to fix the program."
Only about 900 autistic schoolchildren were integrated into regular schools in the past year, while 2,641 attended special education schools or were placed in special classes within regular schools. Among children with moderate retardation, only about 200 attended regular schools while 2,800 were in special education. The suit was filed by attorneys Amir Barak and Ori Kedar.
This suit seeking compensatory damages is the first of its kind, but since 2000, three petitions to the High Court have been filed against the Education Ministry, concerning the integration of special needs children in regular schools. The petitions, which were filed by organizations such as YATED (Children with Down Syndrome) and Bizchut (The Israel Human Rights Center for People with Disabilities), sought to force the Education Ministry not to financially discriminate against children who are integrated into the regular education system.
The High Court ruled in favor of the petitioners. "The state is not upholding its duty according to the law, to provide special education free to children who were placed in the regular educational institutions," wrote former Supreme Court Justice Dalia Dorner, in a ruling on the first petition in 2000. About two weeks ago, another petition was filed, this time to compel the ministry to implement the earlier rulings.
Inbar Leder has been integrated into regular education since she was four years old, except for one year when she studied in a "therapeutic" class. At the end of that year, having noticed a regression in her daughter's behavior, her mother sought to have her put back in a regular class, accompanied by an aide. "I proposed that they take the money they're investing in Inbar in special education and use it to fund the integration," she says. "The directors of the ministry's special education branch rejected the idea and said that I was basically proposing that special education be shut down. That's when I understood it wasn't just a budget issue - our children are oiling the wheels of the system." Over the years, the Education Ministry contended before placement committees, which determine where to place special needs children, that Inbar belonged in special education and that assistance could not be ensured for her at regular schools. At one of the meetings, according to the current lawsuit, representatives stated that "the Education Ministry has no budget left for aides and therefore integration is not possible."
The lawsuit cites a long list of expenses that the parents are forced to bear: paramedical treatments, remedial instruction, partial payment of wages for aides, special after-school assistance and more. There have even been years in which parents paid the student aide's wages, since the local authority fell into budget difficulties.
Inbar, who is fully aware of her situation, says she prefers to study with her "regular friends from school," not only with other children with Down Syndrome. "I'm different from other children," she says. "In class it's hard for me to write and read and sometimes to talk. But I like hanging out with my friends, seeing a movie or going to the mall." She wants to be a singer when she grows up. Meanwhile, like many girls her age, she's looking for a boyfriend. "Society doesn't always understand what a girl like Inbar can achieve. After all, she's developmentally disabled," says her mother Ilil. "But integration is also a social act. Her younger brothers go to a school five minutes away. If I had to send her to special education, she would leave in the morning and be gone for many hours. What sort of message would I be sending to her brothers? That we're getting rid of their big sister? That no one invites her to birthday parties in the neighborhood because they don't know her?
"And if people believe that people like Inbar don't belong with us, then why should someone agree later on for disabled people to live near him, or to work with him or hang out with him in the mall? This is the way to turn into an apartheid society against the disabled. It doesn't matter if Inbar sits for a matriculation exam or not. The right to integrate is a basic right. A disabled person wants to be part of the community too."
Malki Itzik: "Integration imposes the standards of ordinary society - The child can't yell whenever he feels like it or completely withdraw [from life]." Her son, Shai, 15, is autistic and has been integrated in regular schools for the past seven years.
"Many autistic children are good imitators," says Itzik. "If no one in the class is waving his hands around, they won't do it either. Closing them off in special education reduces their ability to integrate for the rest of their lives.
"The Education Ministry has been negligent in providing services to the integrated children and we, the parents, have done so in its stead. Now it's time for them to pay. There's no reason why the state should save so much money at my expense. We are average people who decided to invest all our money in our children's integration. Maybe it was irresponsible on our part, but when I saw how my son was hurt by Education Ministry decisions, there was really no other choice."
Itzik, an architect and member of the board of ALUT (The Israeli Society for Autistic Children), quit her job to devote her time to Shai's integration. Like other parents, she, too, went through a learning process - reading up on the field and attending lectures and workshops. All this, alongside the ongoing struggle against the Education Ministry. "We were active in getting the Special Education Law changed," she says. "We commissioned a study on the budgeting method and developed courses on integration for parents, aides and educators."
According to the study, carried out by Dr. Nahum Blass, the state invests NIS 110,000 per year in an autistic child who attends special education school. If the same child were integrated in a regular school, the state would only invest about NIS 62,000 per year. The state currently invests about NIS 74,000 per year for a child with Down Syndrome in a special education school, compared to NIS 33,000 in a regular school.
The counter-argument made by many in the Education Ministry to such activity by Itzik and others is that it allows parents to cross the line, blurring the boundary between involvement and interference. "In an ideal situation, maybe we would be less involved," says Itzik. "But we have no choice. The Education Ministry has no one to complain to but itself. When no one takes responsibility, the parents have to intervene. If the Health Ministry didn't provide cancer patients with the proper treatment, they wouldn't raise their voices? Because of the vacuum that was created, we studied and became knowledgeable about the field. And now they come complaining to us that we know too much."
Unlike Leder and Itzik, Yossi preferred to be interviewed for this article under an assumed name. He says he chose to do so actually because of his 15-year-old daughter Shir's (also not her real name) success at a regular school. He says, "Maybe it will happen at a later age, when she'll be able to stand on her own and say that she managed to break the glass ceiling, even though she was diagnosed with PDD (Pervasive Developmental Disorder, a syndrome related to autism)."
At the age of three, Shir entered a pre-school specializing in children with communication problems, but this special framework did not help her progress. Moreover, she functioned better at home than in the pre-school. "We realized that learning with other kids with the same syndrome wasn't allowing her to learn how to behave and communicate in a normative way. The special framework accepted her non-normative behaviors and didn't expect her to learn or improve. We realized then that she had to be with regular kids, that there had to be an insistence and expectation that she progress, and that when she wanted to, there would be regular kids around her with whom she could communicate."
Her father says that when they sought to take Shir out of the special education pre-school, "we ran into powerful resistance. Experts appeared before the placement committee and said we were endangering her mental health and causing her irreversible damage. We had to sign a document saying that we took responsibility for any potential damage. It was a horrible experience, because we didn't know for sure that we were right. It was a gamble on our daughter's future."
Shir was put in a regular pre-school and began intensive after-school therapy. She gradually opened up to her surroundings, started to talk and to express feelings. The family's next encounter with the Education Ministry was with a placement committee for first grade, which again insisted that the girl was only fit for special education. When her parents begged for another chance, says Yossi, "they agreed to let Shir attend a regular school, but they informed us that in special education all the services were available and that in the regular framework there was nothing. They even wrote in the decision that the integration would be done with a lot of help from the parents. They were right."
In order to employ a professional aid for the necessary number of hours, the parents had to supplement NIS 2,500 a month out of pocket. When their savings were totally depleted, the family solicited contributions from friends and organizations. Now those funds are all gone too. Yossi: "We aren't able to pay for an aide for Shir for the coming year." He says that not only has the Education Ministry not solved the problem, "it's been threatening all year yet again to stop giving the little that it provides."
The Education Ministry responds: "We recognize the importance of integrating children with special needs into the regular education system, and are making efforts to integrate such children, who, in the assessment of the professionals, will benefit from their integration. The law stipulates a list of special services for which the integrated child will be eligible, but it does not stipulate that each student will receive all of these services. The legislature left the decision in these matters to the judgment of the authorized personnel in the Education Ministry." As for the children of the plaintiffs, the ministry says: "These children were provided with special services to an extent that made possible their integration in the regular system, in accordance with the assessment of the professional authorities."