In a crowded living room in the dilapidated suburbs of Jaffa, the delegates from the Special Needs Study Mission from Los Angeles gathered closer to hear the testimony of an Israeli woman with severe disabilities tell the story of how proper intervention changed her life in countless ways. The program, which is subsidized by the State of Israel, provides Etty S. with home visits from a social worker, an emergency button to contact round-the-clock medical help, and perhaps most importantly, organized excursions with other disabled people in the vicinity.
After one teenager with autism had been calmed down from a terrible fright after he collided with Etty’s enormous blond Labrador in the bathroom, the group listened in respectful silence to her personal story. After she decided to divorce an abusive husband and raise her two children alone, she lost 60 pounds and spent six months in a psychiatric institute. Shortly after her release, she began to suffer from physical ailments that prevent her from accomplishing even the most menial tasks. Despite six doses of morphine a day to ease the pain, she can barely walk and is incapable of cleaning, cooking or shopping. Etty isn’t strong enough to open the front door of her apartment.
“Until I went out a few months ago for a visit to the sea, I hadn’t even seen the trash bins at the bottom of the stairs in six years,” she explained slowly. “I even went to see a film with the group recently after not being in a movie theater for 30 years.”
The home visits have given Etty a new sense of security. She knows the push of a button will summon help, and she no longer feels so alone.
“Even my dog loves Eli,” she said with a big smile as her Labrador nearly squirmed out of her arms upon hearing the social worker’s name. “He’s not just someone who buys me medicine, he also comes to fix things around the house and help me arrange dog walkers. Sometimes I call him just to talk and no matter how busy he is, he makes time for my chatter.”
This program was one of dozens that the Los Angeles delegates were introduced to on their whirlwind weeklong mission to Israel at the end of July. Sponsored by The Jewish Federation of Greater Los Angeles, the trip was designed to introduce participants to a wide variety of solutions that are considered cutting-edge in meeting the needs of those with developmental disabilities. Another goal of the trip was to provide opportunities for fact-finding and exchange.
“We’re here to look at what is being done that we can replicate when appropriate, but we’re also here to forge relationships that will help us learn from each other and collaborate in the future,” said Lori Klein, the Jewish Federation’s senior vice president of Caring for Jews in Need.
Participants included an impressive array of well-known activists (many of whom are also parents of children with autism and other disabilities), therapists, program directors, lawyers, film producers, rabbis, teachers, social workers, parents and three young adults with autism.
According to Andrew Cushnir, the Jewish Federation’s executive vice president and chief program officer, one of the most pressing social needs in the United States at the moment is the dramatic rise in autism. “We are going to see a 600 percent increase over the next 10 years of young adults who are diagnosed with autism, and we need to start creating a new batch of programs that will meet the needs of the new era,” he explained.
Although some similar programs do currently exist in Los Angeles in a different format, the vast majority does not. “We don’t have socialized medicine in the United States, so we are working with a different system entirely,” Cushnir said. “Once we get home we’ll have to evaluate whether what we’d like to accomplish is possible and then we’ll have to decide if it’s economically feasible.”
Without governmental funding, many programs aren’t viable without philanthropic support. And that, according to some delegates, is an extremely limited resource compared to the financial backing Israelis can access.
“Israel is really a leader in special needs work because they care about all sectors of society here — from early intervention to teenagers to army service and beyond. We’re looking at all of the programs here but we’ll have to see which pieces of each program are applicable at home and could work well,” explained Sarah Blitzstein, the director of HaMercaz, a collaborative program that includes The Jewish Federation of Greater Los Angeles and Jewish Family Service of Los Angeles, among other agencies. But beyond the exposure to innovative Israeli programs and being inspired by many Israelis with special needs who are productive members of society thanks to integrative models, Blitzstein also noted that the trip created bonds between the delegates, many of whom did not know each other previously.
“I can go home now and e-mail people or direct my clients to an ally in the field,” she said. “I’ve already set up tentative meetings with people at home about collaborating. Sometimes we get in our own little bubble and it’s hard to see the big picture, so this kind of trip really gives us all an opportunity to see what’s going on in Israel and meet each other to find out more about what’s right in our own backyard.”
One of the most pressing issues on the table for groups with special needs is housing — not just within the Jewish community but also among the entire population. Many older disabled people are forced to get by on their own and cannot thrive as active members of society without a proper environment. As their parents die, some are left to fend entirely for themselves. Israel has come up with many different ways to approach this problem but the modus operandi is always the same: focus on what someone can do rather than what they cannot.
The dinner and ensuing play at Café Kapish was a great example of this policy. After being served a meal in the dark by blind waiters, the group watched a play with actors who are deaf, blind or both.
“The play was extremely powerful. It really showed us the resilience of the human spirit,” Elaine Hall said. “This is a great example of the community coming together and believing that the impossible can be made possible. If we value those with disabilities and give them the best rather than the crumbs, nothing is beyond our reach.”
Hall, founder of the Miracle Project (a theater and film program for children of all disabilities) and the director of the Vista Inspire Program, cited the theatrical, creative activities at the Nalaga’at Center in Jaffa to be a wonderful example of Israel’s positive outlook and appreciation for those with disabilities. In fact, Hall’s career path changed dramatically from being a leading child acting coach to a creative therapist after her adopted son Neal was diagnosed with autism 15 years ago. When traditional therapies failed to help him, she turned to alternative paths to bring him out of his isolation.
Many delegates agreed that instead of looking for a miracle cure, society would be better off practicing acceptance and they were pleased to see the Israeli spirit of inclusion almost everywhere they went. The more personal stories they heard, the more evident this became. Reuven, a soldier with autism who completes organizational tasks for the IDF and is able to serve his country in a meaningful way despite his disabilities, was a source of great inspiration. The group also heard from a 35-year-old man with epilepsy who was homeless at the age of 15 and had attempted suicide multiple times until being taken in by a center for independent living in Jaffa. Now he has the support and care he needs to play guitar, act in plays and motivate others with his personal story. At Aleh Negev, once infertile desert sands have been transformed into a thriving oasis by disabled individuals. One resident named Dalia, who was severely disabled from polio, is proud of working 12-hour days at the village’s Internet cafe. The promotion of independence in order to become productive members of Israeli society no matter what they must overcome gives new hope to the hopeless.
“The wonderful ability to use every resource in order to accomplish great things is what we need to take back home with us,” Hall said with enthusiasm. “We can also learn a lot from the way social services work together with the government in order to promote inclusion rather than exclusion.”
Beyond meeting individuals and touring facilities, the delegates also attended a conference in Jerusalem where they heard from government officials, legal advocates, professors and other Israeli parents.
“The conference was a tremendous opportunity for dialogue,” Klein said. “For some of the parents on our trip, it was a chance to hear that Israeli parents are facing the same challenges and frustrations. For our autistic participants, it was a chance to express the need for choices. There is simply no one size fits all.”
The disabled community is made up of individuals who have different needs so providing various options to meet those needs should be a central focus for future planning. Klein is hoping that the connections formed among parents, children, industry professionals and legal advocates will create lasting partnerships.
As the group gathered for its final breakfast at the Alexander Suites hotel in Tel Aviv overlooking the sea, participants discussed their expectations versus reality.
“The rocks need to be cleared away so that acceptance can be celebrated. We are all individuals and if we stay focused on what we can do rather than what we cannot, we can overcome the bureaucratic pitfalls,” Hall said.
For Diane Isaacs, a veteran producer of film, television and music and the co-author with Elaine Hall of “Seven Keys to Unlock Autism,” the trip to Israel was not yet at an end. With her 17-year-old son, Wyatt, who starred in the HBO documentary “Autism: The Musical,” she attended an international conference in Jerusalem hosted by the ICare4Autism foundation.
As her well-spoken, highly intelligent and musically talented son took the podium to speak, she wondered what he would say since she never coaches him or dictates what he should share. He again amazed her with his precise ability to define the biggest issue in a simple but profound way for the international audience.
“Just like the wall that divides Israel and Palestine, there is a wall that divides the disabled from everyone else,” he said. “Our goal should be to get rid of the wall. It doesn’t matter whether you’re Jewish, Christian, Muslim or autistic; there shouldn’t be walls. We have to find a way to break down these barriers.”
Michelle Wolf, a blogger for the Jewish Journal and co-chair of the mission, noted that the intensity of the trip was a life-changing experience, not just for her but for many others.
“In one of our great conversations on the bus someone compared us to the women’s rights movement seeking suffrage. I think that social movement aptly captures the energy and intensity of what we as parents and activists are trying to accomplish now. We have a long way to go, but this trip has given us more tools to get there.”