In three years, Jodi and Gavin Samuels may face one of the most difficult decisions of their lives.
Born with Down syndrome, their daughter Caily, now 2, will outgrow the Chabad preschool program she attends on the Upper West Side. That means her parents will have to choose between sending her miles away from home to a Jewish program for children with disabilities, such as one in Teaneck, N.J., or to a public school.
The yeshiva closest to home, Manhattan Day School, where the Samuelses’ two older children attend, has refused to accept — or even interview — Caily, despite high cognitive test scores that her parents have been told make her an excellent candidate for inclusion.
“Chabad has been very warm and embracing,” said Jodi Samuels, a South Africa native who came to America with her husband because they wanted their three children to have a good Jewish education. “They believe in the value that every child deserves a Jewish education. But we have no option after age 5.”
The Samuels family is part of a growing movement of special- needs families who are fed up with having to fight the system of Jewish day schools to ensure that their children get a proper Jewish education.
There are several area special-education programs such as Cahal and Kulanu, both in Cedarhurst, L.I., Yeshiva for Special Students in Kew Gardens Hills, Queens; Sinai School in Teaneck, N.J., and Ivdu in Midwood, Brooklyn that provide a specialized Jewish curriculum. Because of the higher staff-to-child ratio required, tuition at these schools tends to be considerably higher than at typical yeshivas.
Those specialized programs have varying degrees of joint activity with mainstream students in other schools, but critics say yeshivas and day schools have been reluctant to expand inclusion or explore creative new ways of integrating special-needs students.
There is currently no Jewish school that provides a full-time inclusion class in which special needs children can learn alongside their peers while receiving assistance from special education teachers, says Jeff Lichtman, national director of Yachad, the Orthodox Union’s program for special-needs kids.
Inclusion classes are now available in many public schools.
“Essentially, nobody has it” in Jewish day schools says Lichtman, who estimates that between 5 and 20 percent of children in Jewish day schools have special needs across a wide spectrum.
Manhattan Day School’s roster of students does include those with learning disabilities, many of whom travel from far away to attend the Modern Orthodox institution on the Upper West Side. But the Samuels family says the school draws the line at children with cognitive disabilities.
Rabbi Mordechai Besser, principal of Manhattan Day School, said in an e-mail message that he could not discuss the specifics of Caily Samuels’ case. But he added “MDS takes very seriously its responsibility to serve as a community school, and has long been at the forefront of Modern Orthodox Jewish day schools in accepting children with special needs. In fact, given its relative uniqueness, we currently have students enrolled in our Special Ed program from all five boroughs, as well as Westchester and Long Island.
“However, we cannot accept every student, and [we] evaluate each admission request to determine whether MDS is the appropriate educational setting for that particular child.”
But the Samuelses say their daughter was never interviewed and they were told that an evaluation of her by an outside agency was not even read. They also say Rabbi Besser told them that if Caily is admitted, others with severe disabilities would have to be accepted too.
In a second e-mail to The Jewish Week, Rabbi Besser said, “Without discussing the specifics of this case, when the Admissions Committee receives admission requests and accompanying material, all of this is reviewed in order to determine whether MDS is the appropriate educational setting for a child. If after reviewing the request and all the material the committee concludes that it is not the right setting, then we do not bring the child in for an interview.”
Lichtman cautions that discussing inclusion as a general topic overlooks the reality that special-needs kids have a wide range of abilities and deficits. Some may have a high or above average IQ. “You have to provide for the needs of children individually and collectively,” he said. For example, he notes that while Yachad has a summer camp that has joint activities with other camps, there is still a need for the Hebrew Academy for Special Children’s camp, a self-contained program.
“Not every child, given their own unique needs, can be in an inclusive program,” said Lichtman, who speculated that MDS may be looking further down the road from preschool. “I think they feel they can’t respond to the needs of a child with Down syndrome. I may disagree with that, but it is relatively easy to include kids in preschool, but in my opinion educationally when you move beyond that it gets much more complicated.”
But parents and advocates are calling for more of a communal effort to think outside the box. There have been two panel discussions held in recent weeks, in Riverdale and on the Upper West Side, to call attention to the problem.
At Congregation Shearith Israel on May 24, about 160 people turned out to hear a panel of experts call for more inclusion. Only a small percentage of audience members said they had children with special needs. Most wanted to know what they could do to help.
Families like the Samuelses worry that they will be forced to give up on a Jewish education. “If my daughter doesn’t have a Jewish education, she is not part of the family in the same way,” said Jodi Samuels, who works in Internet marketing and has started a Facebook group, Caily’s World, to call attention to her battle with MDS. “She has enough challenges in life. Why should she have social challenges as well? The Upper West Side is one of the wealthiest communities. We’re hoping to change the system.”
But not much has changed since the 1990s when Shelley Cohen and her husband, Ruvan, battled to have their son, Nathaniel, whose battle with Duchenne muscular dystrophy required him to use a wheelchair, included in a yeshiva program. Unable to enroll him at MDS, their school of choice, the Cohens sent their son from Manhattan on a 90-minute commute to the Kushner Academy in Livingston, N.J. But doctors insisted such a commute was too stressful for Nathaniel and urged them to find a closer school.
“I spent his entire sixth grade year trying to find a day school here in Manhattan that would accept him and went from pluralistic to Reform and not one school was willing to accept Nathaniel,” said Cohen. “There is learning disability that is associated with Duchenne, but he is not at all a behavior issue. He was one of the most eager-to-learn children you’d meet in a lifetime.”
And the challenges weren’t only at school. “I had to fight to get him into a Jewish camp and to have a ramp at the bima [at Lincoln Square Synagogue] so he can have an aliyah. There are issues always.”
Manhattan Day School ultimately admitted Nathaniel for seventh and eighth grade, and the Cohens were told by a rabbi that he not only had a positive effect on other classmates but on the administration.
“He ended up being a total asset,” said Cohen. “It is usually the case that a special-needs kid raises the level of the school. Most schools find that it adds to the culture and doesn’t detract and doesn’t make the best and brightest any less best or less bright.”
When Nathaniel, whose condition gradually paralyzed him, died at age 21 in 2007, the Cohens became activists to ensure that other parents wouldn’t have to share their experience. In his memory, they have sponsored a workshop program every year at Yeshiva Chovevei Torah, the Modern Orthodox rabbinical seminary in Riverdale that focuses, on a rotating basis, on the needs of the physically disabled and those of the developmentally disabled.
“I’m hoping there will be a trickle-down effect, that if [rabbis] are sensitive to what is essentially the weakest link in society, people who have trouble speaking for themselves, we will have a more sensitive Jewish community as a whole,” said Shelley Cohen.
Lichtman of Yachad says the “majority of [special-needs] kids across the country are included in some way, while virtually none were in the past,” but he says kids with serious developmental disabilities like Down syndrome and autism are “typically not included” outside specific programs, some of which are located in mainstream schools.
He stressed that education programs that include shared mainstream activities, such as assemblies, gym, lunch and recess, are as important as shared learning time.
“Inclusion is inclusion,” he said. “Kids are interacting with each other much more at recess and lunch than in the classroom.”
“The Jewish community, in my opinion, should have a broad spectrum of education services developed over time to meet the needs of all Jewish children,” said Lichtman. “But that doesn’t mean every single child should have a fully inclusive education.”
Rabbi Dov Linzer, who with his wife, Devorah Zlochower, has also become an activist for special-needs families, believes that the first step toward inclusion must be to place it more prominently on the communal agenda.
As rosh yeshiva of Chovevei Torah, he wants to ensure that the future rabbis in his charge understand the issues involved.
“The goal is to sensitize all the students and make them aware of the problems, especially with invisible disabilities,” said Rabbi Linzer, who, with his wife, has two children with special needs. “It’s so easy not to be aware that this exists in the community.” The workshop offered a chance to provide early insights that will shape their approaches to the problem once they assume a pulpit or communal leadership position.
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