Like most mothers, Beth Steinberg and Miriam Avraham used to dread the approach, each summer, of the long school vacation.
“Miriam once described it to me as a catastrophe,” quips Steinberg, a New York native who made aliya in 2006 and at that time was looking for a summer program for her son, Akiva.
“It is a catastrophe,” emphasizes Avraham, who was also born in New York and moved here more than 30 years ago. “There is almost nothing going on in the summer.”
While of course there are numerous summer camps all over the country for thousands of Israeli children, the two women are referring to a comprehensive peer-led framework for children with disabilities and developmental delays.
Steinberg and Avraham each have a child with Down’s syndrome, and according to both of them, the limited options consist mainly of camps with no clear ideology on how to conduct informal educational programs for youngsters with certain special needs.
“There is an overnight camp where they take the kids away for a week and bring in some teen volunteers, but God knows what they do with them there,” says Avraham, whose daughter Adina is now 15.
She adds, “When I think about camp, I think about an outdoor setting, a green area, a different environment from school and, most importantly, a dugma ishit [leading by personal example]. I think a camp’s biggest job is to provide a personal example to the children and encourage them to be a dynamic group together.”
Steinberg and Avraham go on to explain the predicament facing children with disabilities in Israel, especially when it comes to informal educational programs such as summer camps. While the school system provides for a variety of options, ranging from specially equipped and designed schools, to full inclusion in the mainstream school system if the parents are willing to take on the burden, once school is out... it’s a different story.
We are sitting together in the grounds of the Nature Museum in Jerusalem’s leafy German Colony neighborhood. It is here that the two women have been involved in attempting to fill that void by developing a non-formal educational model for children with disabilities so they can find their place in mainstream society outside of school.
Shutaf (www.campshutaf.org) is a grassroots initiative the women launched first as a small summer camp four years ago, then as a thrice-yearly program during the main school vacations, and more recently as a year-round youth group that meets once a week.
While the youth group, which is taking place on the day we meet, primarily attracts children with ranging developmental delays, the camps held in summer, winter and spring reach typically-developing children, too.
“We see this as a model of real inclusion,” Steinberg, who has traveled throughout the US and been in touch with similar programs, explains proudly. “A child who has interacted with another child who has a disability will see the world in a different way, and we believe this connection has to start at an early age.”
She points out that this could be the first program that promotes a framework for children with disabilities and allows mainstream children to participate, and not the other way around.
“Not long ago, we had this young guy who wanted to come to one of our teen programs, but he wanted to come as a volunteer,” says Steinberg.
“We explained to him that he could not automatically become a volunteer, but that he needed to learn how to do it, and first he had to be a participant.”
This summer's camp, which begins in August, will include up to 70 children ranging in age from seven to 21, and will mix a broad range of children with disabilities and without.
Steinberg says that up to the age of 17, the ratio will be 75 percent with developmental delays and 25% typically- developing; while in the older group, 17-21, the mix will be 50-50.
“Israelis love to volunteer,” she observes. “But there is no system of mentoring the madrichim [counselors], and that is one of the things we aim to do.”
Another of Shutaf’s goals, she says, is creating an environment where people’s differences are embraced and even celebrated.
“We live in a world of all different kinds of people, and it’s time that everyone wakes up to these models of inclusion,” says Steinberg.
“The world wants to divide people up into special-needs and not-special- needs, but it’s not that simple; there are grey areas, and if you ask me, everyone on this planet has some type of special needs,” Avraham adds, noting that “in all of our frameworks, we try to stay away from the labeling, because we want to give all the children a place to grow.”
Avraham’s insights into the problem of labeling derive from her own experiences with other people trying to categorize her daughter’s disability.
And both women decry the stereotypes attached to children with Down’s syndrome.
“I hate it when people say that children with Down’s are ‘so loving,’” mimics Steinberg, adding that for most organizations, the concept of inclusion means integrating children with disabilities into the mainstream and not, as Shutaf is attempting to do, including the mainstream in the challenges of living with a disability.
“Even for children who are included in the mainstream school system and have parents who are willing and ready to navigate this difficult route, at some point it becomes very difficult for the child with disabilities,” she explains. “At some point during the high school years, the child still has to deal with their own self-identity and how they relate to the rest of the community.”
She adds, “After the age of 21, there are many community programs to help people with disabilities to integrate into the mainstream, but what about pre-preparation, when they are teens and developing or defining themselves?” According to Steinberg, “All of our programs focus on group development for teens with disabilities and gives them a place to work on their self-identity and advocacy, on how to manage the street and how to explore what the greater society has on offer.”
In setting up Shutaf to address these needs, Avraham describes how there was really no informal education program that addressed the complexities of growing up with a disability.
“[Adina] was going to summer camp at her school, and she was coming home very upset,” she recalls.
“There was no one there training any of the counselors how to work with the children, let alone with children who have special needs. I realized very quickly that I could not send her to a mainstream summer camp anymore.”
That was before she met Steinberg and started the first ad-hoc camp in 2007. Avraham tried for one year to send her daughter to a camp for special needs in the US, but that was the opposite extreme, she says. At that camp, the children were one-on-one with the counselors, and there was no group dynamic whatsoever.
Just as she was about to give up hope, Avraham was introduced to Steinberg, and the two shared their experiences of raising a Down’s syndrome child in a Jewish community not necessarily attuned to such disabilities.
The two agreed that the options for school vacations were practically nonexistent both here and in the US.
“The summers in New York had been a disaster, and I quickly realized that it would be no easier in Israel,” says Steinberg. “There is no such thing as informal education for children with disabilities.”
Together the two women asked: “Why can’t we create mainstream American Jewish camping here in Israel aimed at children with disabilities, and include children without disabilities?” Within a year, they started to operate a small camp for 10 children at the Ein Yael Living Museum in Jerusalem, with participants hearing about the initiative via word of mouth. A year later, the camp had already grown to 40 children, and additional camps were planned for Pessah and Hanukka school vacations.
“We have learned a lot and, I believe, had a lot of success. In 2009 we created an official charity, and we have grown slowly and carefully, with most of our funding coming from private donors,” says Steinberg. She also hired a full-time program director, Deborah Lobel Shafran, who has a background in special education, so that she and Avraham could focus on fundraising.
In the two years since becoming a viable nonprofit, the two women have turned to the government and the Jerusalem Municipality for financial support, or at the very least a permanent home from which to run the camp – so far, they still have no venue for the camp set to start in a month.
While the municipality has agreed to assist them with a donation of NIS 8,500, the two say it is simply not enough to allow them to meet the already growing demand.
“How can they not get the importance of what we are doing here?” asks Steinberg, shaking her head.
“How can we get them to understand that what we are doing here is great?” “They [the government officials] have all come to visit, and they think we are doing wonderful work, but we do not fit neatly into their little boxes,” says Avraham, explaining that government criteria dictate that each child’s disability be identified.
The amount of charity the organization can receive per child is determined by where the children fit on the disability scale.
“We don’t believe in labels,” she emphasizes again. “We just don’t know what each child’s special need is exactly.”
In the meantime, the women have been looking outside of Israel for financial support, and their model of inclusion was picked up by Jay Ruderman, president of the Ruderman Family Foundation, which is dedicated to building a model for Jewish communities to integrate children with special needs into the mainstream.
In an interview with The Jerusalem Post, Ruderman, who has provided $10,000 in funding for one of Shutaf’s programs, says: “If we hold ourselves, as Jews and Israelis, to the highest moral standards, we must try to include all our children in the everyday activities of our community and not just focus on the best, brightest and most able children.”
He calls Shutaf “extraordinary in that it serves children with special needs not in segregated programs, but in a fully inclusive atmosphere with a true mix of children with and without special needs.”
The program “ensures that children with special needs are fully included in camping and social gatherings. It also ensures that children without special needs are exposed to children with challenges that are different from their own,” he adds. “In short, I believe that inclusive programs will make us a better society.”
Saturday, July 2, 2011
The Jerusalem Post in Israel:
Posted by BA Haller at 2:47 PM