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Special Needs Get a Boost

April 5, 2012 By:
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After helping to set up a modified religious school program, Joel and Rachel Ezekiel-Fishbein last May celebrated the Bar Mitzvah of their son Adam, who has Tourette Syndrome and ADHD. Photo by Beck Kelly

With Tourette Syndrome, Attention Deficit Hyperactivity Disorder and a room filled with rowdy classmates working against him, 13-year-old Adam Fishbein said it simply became too difficult to control himself during religious school by the fourth grade.

But, Fishbein said, he also wanted to become a Bar Mitzvah, and he actually liked spending time at synagogue.

So instead of dropping out, his parents worked out a plan with Congregation Kol Ami in Elkins Park to let him study with a private tutor while remaining active in the religious school as an assistant to a kindergarten teacher and later, the youth choir director. He saw his former classmates at youth group activities and joined a new adult choir at the cantor's invitation.

Even now, a year after his Bar Mitzvah and away at a New Hampshire boarding school for eighth grade, the teen drops into choir practices and meets with a confirmation teacher when he comes home on weekends.

"I never want to just stop going because it's like a part of my life, you know? Like, my good life," Adam explained in a phone interview.

Blown away by his son's unexpected success, Joel Fishbein petitioned the synagogue to start a formal inclusion committee and found himself connecting to a pilot program driven by a consortium of professionals, clergy, lay leaders and educators dedicated to helping those with special needs realize their potential within the Jewish community.

Over the last three years, advocates from more than a dozen groups in the region have met monthly to make sure that the special needs community doesn't get lost in the shadows as Jewish institutions wrestle with hard economic realities and, in some cases, dwindling congregations. Under their collaborative focus, services for Jews with special needs have not only continued, but expanded.

This month, the special needs consortium heralds more milestones with a third annual inclusion conference scheduled to be held at Congregation Adath Israel on April 29, and the launch of a searchable website aggregating all sorts of resources that someone with disabilities might need. (See sidebar.)

The impetus for the consortium came from a series of surveys of religious school and preschool programs that Jewish Learning Venture (formerly Auerbach Central Agency for Jewish Education/Jewish Outreach Partnership) conducted about five years ago. Every single one reported having special needs students, usually 10 percent to 15 percent, and those numbers are likely much higher by now, said Debbie Gettes, the Jewish Learning Venture's program director for special needs initiatives.

Hoping to help those programs better serve their special needs charges, Gettes brought together experts and staff from various agencies to brainstorm. Two more surveys sparked by those meetings found that despite synagogues' attempts to be inclusive, parents still complained about a lack of resources and Jewish social life for their children.

Responding to that, consortium members solicited presenters to address specific concerns at the first "Opening the Gates of Torah: Including People with Disabilities in the Jewish Community" conference held in 2010. About 200 people attended.

Momentum has continued to build since then, Gettes said. About 15 people show up to the consortium's monthly meetings, including executive directors and representatives from the Friendship Circle, JEVS Human Services, Orot, the Jewish Federation of Greater Philadelphia, Federation Early Learning Services, several synagogues and others. A few new groups joined in more recently, including the Kohelet Foundation, Albert Einstein Healthcare Network and Tikvah Family Camp.

This kind of collaboration is "unheard of" in other cities, Gettes said. "I mean, people call me and say, 'Can I be in the consortium?' "

More impressive, she said, donors, community leaders, synagogues, schools and social service agencies have stepped up to respond to their nudges for action.

In September, for example, the Lasko Family Foundation funded an inclusion pilot program that included Joel Fishbein's group at Kol Ami along with parallel committees at Old York Road Temple-Beth Am in Abington and Adath Israel in Merion Station. All three are already surveying congregants to assess what's lacking, developing mission statements and adding notices about inclusiveness to their newsletters to make sure the concept "infiltrates every facet of synagogue life," Gettes said.

Fishbein and some of his counterparts started the process before joining the pilot, but he said being able to share best practices with other congregations has been tremendously helpful, as has the guidance they receive from staff at Jewish Learning Venture to help them outline plans for becoming more inclusive.

Elsewhere in the area, staff at Mishkan Shalom are working to expand Celebrations!, a small-group Shabbat service and educational program tailored for children with disabilities and their families that started a year and a half ago.

In February, organizers won a $20,000 grant from the Covenant Foundation to add two holiday programs to the current line-up of 10 monthly workshops and adapt the curriculum for use in other places.

And at Jewish Family and Children's Service of Greater Philadelphia, staff are deploying grant funds to oversee the new online special needs directory, expand care management services and plan a disability themed summer film festival.

Social workers at JFCS' B'Side program, which launched last year, now assist 16 high-functioning adults with anything they might need, from financial planning to reminders to do chores.

More recently, the agency added a series of social-skills workshops followed by subsidized trips to museums, cooking classes, shows and other fun outings for clients aged 14 to 20. That socialization program, called the Network, was previously only available to older adults.

All of these things have made a huge impact, Gettes said, and "when you hear the voices of the parents, you'll hear a difference."

That said, she continued, there's still much more to do, especially when it comes to youth groups and teacher training.

"It does not end," Gettes said, "because once it ends, then you stop talking about it."

Members of the consortium are already vetting a number of "dream" proposals, such as training for preschool teachers on dealing with behavioral issues and a comprehensive program to help disabled adults live independently.

One member suggested making a documentary on the special needs synergy in Philadelphia to motivate Jewish professionals in other states to consider similar efforts.

Even little things like publishing inclusion policies on synagogue websites can be a huge deal for families who would otherwise assume that it's not worth the effort to see if staff would be willing to accommodate them, Joel Fishbein said.

After seeing how far his son came, Fishbein said, he'll advocate as much as he can to make others with special needs feel more welcome in the Jewish community.

Other members of the congregation were flabbergasted when they watched Adam lead his entire Bar Mitzvah service, complete with a speech about his challenges dealing with depression and disabilities, his father said.

He formed "real relationships with people in the community because he felt so comfortable there," Fishbein said. "I want it to be that way for everyone."

For information about the conference, email [email protected] or call (215) 320-0389.

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