Each week, Michelle Alkon tried to light Shabbat candles with her family. But each week, when her son Ben saw the burning candles he would sing “Happy Birthday” and blow them out. “I wanted to have a happy Jewish home, [but] after week after week of trying to teach him that [Shabbat] was a special and wonderful thing, we just gave it up,” Alkon recalled.
Ben is autistic; his parents had tried to enroll him in Hebrew school at their synagogue in Newton, Mass., but found that the school was not equipped to deal with his special needs. Then, five years ago, the family connected with a program where Ben could attend Hebrew school and even become bar mitzvah. Today, said Alkon, everything has turned around for Ben, now 15: “He says the blessings over the candles, he says the blessing over the challah, and he says the whole kiddush. He doesn’t just do borei p’ri hagafen—he does the whole thing.” Ben had his bar mitzvah in 2005.
The program that helped Ben is Etgar L’Noar, a Boston-area nonprofit founded by parents in 1999 to provide supplementary religious education to moderately and severely disabled children who are unable to attend Hebrew school at their local synagogue. Etgar L’Noar recently merged with the Jewish Special Education Collaborative, also founded in 1999, which provides support for students with special needs in day schools. The newly merged organization is called Gateways: Access to Jewish Education.
“As a merged organization, [we can] extend our reach — to serve more kids, to be more effective, to be more excellent,” said Arlene Remz, who was executive director of Etgar L’Noar and now holds the same title at Gateways. Etgar L’Noar and JSEC will maintain their separate names and discrete programming while operating under the Gateways umbrella, but they will share administration, fund-raising and other infrastructure. The merger has created an organization with four full-time and 35 part-time staffers and a combined budget of $900,000.
Merger talks began three years ago, when the Boston-area Combined Jewish Philanthropies funded three local day schools to pilot innovative programs and curricula as part of its $45-million Peerless Excellence Initiative. When none of these funds were specifically earmarked for special-needs kids, members of the Jewish special-education community convened a task force and applied for additional funding under the Initiative; they got $2.5 million. A portion of the money went to Etgar L’Noar to begin providing services in day schools, and a portion went to JSEC to develop its infrastructure. Members of the two groups soon realized that “there was a possibility that we would start to have an overlap of services, and we did not want that,” recalled Remz. “The fact that both of us got very generous grants, it sort of turbocharged us toward each other.” The merger became final on July 1, 2006.
Twice per week, Etgar L’Noar students gather at Hebrew College in Newton Centre, Mass., for classes, groups and activities. Between the various programs, there are 45 students from some 40 different synagogues, with a range of denominational affiliations; families come from as far away as New Hampshire and Rhode Island. Etgar L’Noar is designed for kids with moderate to severe disabilities; “kids with milder disabilities, such as learning disabilities and ADHD, are starting to be served better in our local Hebrew schools,” said Remz. “For the most part, the kids that we have at Etgar, their Hebrew schools are not able to modify or provide the support that they need.”
About 50% of Etgar participants have autism; there are also children with cerebral palsy and pervasive developmental delay, or mental retardation. There are kids who are blind, deaf and in wheelchairs, and some are nonverbal. In addition to the Hebrew school and b’nai-mitzvah-preparation programs, Etgar also offers a program called Mitzvah Mensches, for teenagers post-b’nai mitzvah, and a tots program for 2-, 3- and 4-year-olds and their parents. Classes typically contain between five and 10 students, each of whom is paired with a teen volunteer; classes are led by a special educator and one or more specialists, such as a music therapist. Each child has his own individualized learning plan, which is developed in conjunction with his parents, teachers and the Etgar staff.
Where Etgar L’Noar offers supplementary education, JSEC is integrated into the day-school setting. Operating in nine Jewish day schools in and around Boston, JSEC brings speech and language pathologists, occupational therapists, physical therapists and learning and reading specialists into the schools to provide support to 125 children whose disabilities range from mild to moderate, who otherwise might not be able to remain enrolled. “All of these are services that, if a child were in a public school and had an [individualized education program], they would be eligible to get for free,” said Remz. “And in fact, many of the kids in the day schools were accessing those services for free in their local public school. What that meant was that Mommy or Daddy had to go pick up the child at 10 o’clock at the day school, drive them across town to the public school, get your half-hour of speech-and-language therapy, drive back to the day school, go back to your class, and you’ve just missed an hour and a half of reading.”
In addition to supporting the students, JSEC staff also provides coaching and professional development for teachers. Jane Taubenfeld Cohen is the head of school at South Area Solomon Schechter Day School in Stoughton, Mass., which has been involved with JSEC since 2001. “It makes the teachers better teachers for every student,” she told the Forward.
Cohen estimates that 25% of the school’s 200 students are involved in JSEC. They range from kids without any formal disabilities, who simply need some extra support, to kids who require several hours a week of additional instruction and therapy. “We have kids who could have been okay. But then you have kids who really need a special way of learning. Those kids, in general, were being counseled out of day schools and going to public schools,” she said. In general, JSEC students are not as significantly disabled as the kids in Etgar L’Noar, and JSEC kids are largely integrated into classroom settings with their more typically developed classmates. Remz says that within the next two years, Gateways hopes to pilot a day-school program with self-contained classrooms for more significantly disabled children.
Tuition for Etgar L’Noar is $950 per session per year; children who attend the once-per-week Hebrew-school classes and the once-per-week b’nai-mitzvah classes, for example, would pay $1,900.
For JSEC, tuition varies according to the services a child requires and is paid in addition to whatever tuition the family pays to the day school. Costs range from $600 for a year of weekly half-hour group-therapy sessions to $4,800 for three hours of weekly individual therapy. The fees work out to about $45 per hour, which, although it is more than families would pay in a public-school setting, is far less than they would pay for private therapists.
“We want to make it affordable, so we’re really subsidizing the cost to parents, and we also do offer scholarships,” said Remz. The schools also pay membership fees, which range between $1,800 and $5,400 per year, depending on how many students are enrolled in JSEC. This year, JSEC is piloting a new program for kids who have more intensive needs; for a flat fee of $5,000, a child receives additional remedial instruction, case management and an inclusion aide in the classroom.
Ultimately, the merger of Etgar L’Noar and JSEC is about choices, said Alkon, who is on the Gateways board of directors. “Philosophically, we now are able to say to parents who are coming in: You want your child educated Jewishly. What does that mean for you? If it means they want to be part of their local synagogue community, but have their kids educated in public school, we can do that. If it means they want to be in a day school, we can do that.”
Speaking as the parent of a child with special needs, Alkon concluded, “That sense of having a choice is not one that most of us have ever had before.”
This story "Doors Open for Disabled Kids" was written by Beth Schwartzapfel.