Fighting for inclusion

Parents of children with disabilities press for greater integration in schools and society.

Children at school (photo credit: INGIMAGE / ASAP)
Children at school
(photo credit: INGIMAGE / ASAP)
WHEN GABY Shine Markowitz was looking for a kindergarten in Jerusalem for her daughter, Hallel, she knew what she wanted: a regular school, not one for children with special needs.
She recognized that Hallel, who is now six years old and has Down syndrome, had a remarkable ability to mimic and learn from others, including her three older siblings.
But, her mother felt that because she had been in a special education preschool with mostly nonverbal children, she wasn’t learning as much as she could.
Shine Markowitz was also thinking about where she envisioned Hallel in the future.
“I wanted her to be integrated from an early age, so that, eventually, she’ll become a fully functioning, participating member of society,” she says. “What chance did she have if she was always apart from society?” But when Shine Markowitz sought support from educational and developmental specialists, she was shut down. Hallel simply “wasn’t ready” for a regular school, she was told. No one would even give her the forms required to switch schools.
This experience isn’t unusual in Israel, where inclusion for children with special needs ‒ a term that encompasses everything from learning disabilities to autism to emotional and behavioral issues to intellectual disability ‒ isn’t the norm.
For the current school year, researchers from Hebrew University found that just 8 percent of children with “low-frequency disabilities,” such as Down syndome, are included in regular classrooms.
Rates of inclusion are higher for children with “high-frequency disabilities” such as language disorders ‒ the study found just over half of these children are in regular classrooms. But this still leaves nearly 50 percent of these children segregated, either in special classrooms within regular schools or in entirely separate schools.
Low rates of inclusion persist in Israel despite laws that were meant to promote the practice.
NEARLY 15 years ago, the Knesset passed the Inclusion Law, an amendment to the earlier Special Education Law, which stated that the Education and Finance Ministries would establish a program to include children with special needs in the regular education system. Children with special needs who were deemed eligible for inclusion also were entitled to additional services under the law, including aides and therapists.
The reality is quite different, however, say parents who have fought for inclusion for their children.
Jodi Samuels worked hard to secure inclusion services for her daughter Caila, who is now nine and has Down syndrome, when they lived in New York. Upon moving to Jerusalem two and a half years ago, she found herself starting all over again ‒ except this time, she had trouble making any progress.
Like Shine Markowitz, she found herself shut out of the regular education system.
When she tried to enroll Caila in first grade, “all the schools found a way of directly or indirectly saying no,” she says. For Miriam Avraham, whose daughter Vinnie has Down syndrome and is now 21, inclusion didn’t work out, despite years of trying. Teachers weren’t properly trained to work with children with special needs, says Avraham, and her daughter didn’t have any friends. It was actually Vinnie who expressed the desire to leave her regular school, saying she was “sick of being on the side.”
The decision to give up on inclusion was painful for Avraham. Although she believes strongly in it, she says “the system wasn’t ready.”
Chen Miller also struggled in regular education.
When at the age of 10 she still could not read or write, her parents moved her from the public school on their kibbutz to a special education school.
“I needed something that the regular system couldn’t give me,” says Miller, now 29.
Although it was a valuable experience, being in a special school “made me feel like outsider in the community,” she says. She was determined to return to a regular school eventually.
After several years, she did – but going to school with her peers did not turn out as she had hoped. She endured “years of hell” – social isolation, taunting from her classmates, and teachers who told her she was “hard to teach” and “not good enough.”
With sheer determination, she managed to persevere and finish high school, and then went on to receive a bachelor’s degree in education. She now teaches at a school for children with special needs in Givat Haim, runs her own theater company in Mishmar Hasharon, and gives lectures all over the country about her experiences and the importance of recognizing the ability in every child. Video clips from her lectures have gone viral, with millions of views online.
Despite the trials she endured in regular schools, she still believes that inclusion is the ideal.
“We need to get to a place where everyone can learn in one school,” she says. “But in this school, we must give every child what he needs – not just children with special needs, but every child.”
Parents and advocates see many reasons why inclusion isn’t working. Chief among them is money – the Inclusion Law did not provide funding to make the ideal of inclusion a reality.
WHILE CHILDREN in the special education system are entitled to a full basket of services, including various kinds of therapy during the school day and transportation to and from school and after-school programs, children who leave the special education system for regular schools don’t get the same services ‒ the money simply isn’t there.
That’s because funding for inclusion is part of the budget for special education, not regular education. In practice, this means children in inclusion get whatever is left over after the needs of children in the special education system are provided for. The irony, say both Shine Markowitz and Samuels, is that children with disabilities need these services all the more in order to succeed in regular schools.
Because the necessary services aren’t provided, inclusion becomes a privilege for those who can afford to pay for them, say parents. Even for them, the day-to-day reality of inclusion is often overwhelming.
Samuels and Shine Markowitz had to take jobs with flexible hours so they can pick their daughters up from school early every day, before after-school programs begin – the girls cannot participate in these programs without an aide, and the government doesn’t even provide enough funding to cover the cost of an aide for all the hours of the regular school day.
Several times a week, these parents shuttle their daughters to costly speech and occupational therapy sessions at centers all over the capital, since the schools don’t provide them.
“Our daughter is exceptionally high-functioning; we work flexible hours and we can afford private services,” says Samuels. “If we’re finding it impossible, then it really is impossible.”
For things to change, parents and advocates say there must be a major shift in attitudes about inclusion in this country. For Shine Markowitz, the reason for the stark difference between special education and inclusion services in Israel comes down to what she calls “the welfare state ideology.”
“We take care of our weak and our poor and our needy,” she says. “We’re very good at taking care of people. But when people say we want to do things differently, we want to be part of society ‒ it’s too much.”
Tom Gumpel, professor of Education at Hebrew University and one of the authors of the aforementioned study on inclusion rates, says another problem is that Israeli society is exclusive by nature, always separating people into different categories ‒ religious and secular, Jew and Arab.
“Nothing in Israel is about inclusion,” he says. “How can a country that doesn’t believe in inclusion in anything have an inclusive education system? The culture doesn’t want pluralism, it wants separateness.”
Miller thinks societal changes must happen before inclusion can succeed.
“It’s time for Israeli society to say we are putting everyone in the center, not on the side,” she says.
If schools impose a model of inclusion in the absence of a broader societal shift, she fears inclusion will fail.
But many parents of children with special needs want to see inclusion happen faster.
They are encouraged when they see schools take steps toward inclusion. Even then, many say, they see it as an act of kindness, not a matter of doing what’s right or what’s required by law, say some parents. Both Shine Markowitz and Samuels say educators have balked when they’ve advocated for more services for their children. “They say, ‘We’re doing so much for you, why are you being so pushy?’” says Shine Markowitz.
Schools also frame support for children with disabilities in terms of changing or “fixing” the child, says Avraham, an attitude that always irked her. “I believe very strongly that inclusion is about changing the environment and not changing the person,” she says.
“That’s a huge change for schools to make and people don’t want to do it,” she says.
When inclusion does work in Israel, it’s because individual people make it happen.
For Shine Markowitz, one of those people is Channie Plotnick, director of Count Me In Beyachad, an organization that works to promote the inclusion of children and adults with special needs in Israel.
Seeing that she was getting nowhere on her own trying to enroll Hallel in a regular school, Shine Markowitz turned to Beyachad and Plotnick helped her navigate the system. Plotnick told her what her rights were, and figured out whom to talk to and how to get the necessary forms to switch from special to regular education. Just as important, Plotnick reassured her that pushing for inclusion was the right thing to do.
The next key person on Hallel’s path to inclusion was a preschool teacher Shine Markowitz calls a “visionary,” who was not only willing but excited to include Hallel in her class. At the end of the school year, the teacher told Shine Markowitz that only after having Hallel in her class did she truly understand why inclusion was necessary.
“Hallel is just one of the kids and there is no reason on earth why she should not be here,” Shine Markowitz says.
NOW THAT she’s had this transformative experience, the teacher is on the “inclusion bandwagon,” offering to participate in panel discussions and do whatever she can to promote inclusion, says Shine Markowitz.
In addition to supporting parents, Beyachad works for legislative change. About a year ago, Plotnick helped bring together different parent groups and committees to create a single forum called Shiluv Kohot (Combining Forces) to lobby the Knesset. “To change laws, having one voice is very important,” says Plotnick. “We need one campaign, many parents fighting for the same thing.”
Shutaf, an organization based in Jerusalem that was co-founded by Avraham and Beth Steinberg, is also on the front lines of inclusion in Israel. It grew out of a desire on the part of several parents of children with special needs to give their children an inclusive summer camp experience ‒ something that didn’t exist at the time. In 2007, they started with a two-week session with 10 children with disabilities and two without. “The kids came home dirty and happy, and we knew this is what we wanted,” says Avraham.
Shutaf grew quickly from there. Today, it offers a three-week summer camp for 130 children, aged 6-23, as well as camps over Hanukka and Passover. It also offers a young leadership program for teenagers and adults, with and without disabilities, ages 14 to 23. The goal is to prepare participants for adulthood through what Avraham calls “informal educational work” ‒ sex education, drug and alcohol awareness, self-defense, self-presentation and social skills.
A few features set Shutaf apart from other inclusion programs. One is that all its programs are comprised of approximately 75 percent people with disabilities and 25 percent people without ‒ in most inclusion programs, those without disabilities are in the minority.
Avraham says the reason for flipping the ratio is that it allows Shutaf to serve as many people with disabilities as possible, while still being an inclusion program.
Shutaf’s programs also integrate people with different disabilities, from cerebral palsy to autism to emotional and behavioral disorders to cognitive impairment. Most programs separate people by disability, says Avraham ‒ perhaps another example of the Israeli tendency to separate people into “boxes.”
Most of the funding for Shutaf’s programs comes from foundations and private donors in the United States. This allows programs to be heavily subsidized, so that each family pays what it can. The Jerusalem Municipality has not been very supportive, Avraham says, providing only 10,000 shekels a year.
The Municipality insists it has been supportive of inclusion initiatives in Jerusalem.
“The Municipality has made major investments in promoting this field of integration and inclusion in the city’s educational system,” Frayda Leibtag, adviser for Foreign Affairs and Media for Jerusalem Mayor Nir Barakat, wrote in an email. For example, she says, Jerusalem was one of the first cities in Israel to implement a software program that allows parents to choose the educational framework best suited to their child.
But parents and other advocates for inclusion are demanding that more be done.
They see themselves as warriors and say the battle has just begun.
In addition to Beyachad’s national parent hotline, annual inclusion conference, workshops, and awareness campaigns, Plotnick wants to foster inclusion throughout Israel by creating four regional branches, in Jerusalem, central Israel, the north, and the south, with each providing case management, lobbying, inclusion awareness programs and support groups.
Shine Markowitz wants to see greater visibility of children and adults with special needs in the community ‒ an essential part of increasing awareness and acceptance of difference, she says.
About a year ago, she took a step in this direction when she approached Sophie Sklar, co-founder of clothing company Skye Green, about including a teenage girl with Down syndrome in a photo shoot.
For Sklar, the idea fit perfectly with Skye Green’s motto, “Be your own kind of beautiful.”
The experience was a success and Tehilla, now 16 years old, has participated in additional shoots for Skye Green.
Shine Markowitz says experiences like these are essential for helping the inclusion movement gather momentum.
“Every child who has a successful inclusion experience changes their community, their world,” she says. “It creates ripples.”
When people see inclusion at work, says Shine Markowitz, it changes their whole outlook. “They see a child who flourishes in this environment, who is more similar than different from their child, not this imagined non-functioning child who’s going to drain all the resources.”
However, despite all their hard work, most of these parents doubt they’ll see their efforts fully realized.
“I’m not convinced Caila will see true inclusion in this lifetime,” says Samuels.
Still, they’re thinking about the big picture.
“We’re going to keep fighting for our kids so that we can change the system for the next generation,” concludes Shine Markowitz.