A home for life

A new village in the Negev will provide an alternative for hundreds of mentally disabled adults.

homelife pic 88 (photo credit: )
homelife pic 88
(photo credit: )
For most parents, the day their child turns 21 is cause for great celebration. As well as marking a gateway into adulthood and looming independence from their parents, it is also a time to reflect on what their young offspring have achieved thus far in their lives - whether that be completing army service or university or preparing for a great career, marriage and future children. For Yonat and Ahron Levi, however, as their daughter Keren's 21st birthday approached, they began dreading what lay ahead for her future. Suffering from severe cerebral palsy since she was born, Keren, now 26, is confined to a wheelchair. She has never fed or bathed herself and has difficulty moving at all. "She is a girl without words," says her father, speaking by phone from his home on Kibbutz Sa'ad in the northern Negev. "She needs help standing, has almost no motor skills and moves very, very little. "She doesn't recognize us when we go to visit her," he adds, a hint of sadness in his voice. Keren has spent almost her entire life living in institutions, explain her parents. "When we first decided to put her in a home, we were looking for what would be best for her and best for the whole family," says Yonat, who has another six healthy children living at home. At first they placed her in St. Vincents, a home for disabled children in Jerusalem's Ein Kerem neighborhood. "We wanted her to be in the best place possible and at the time, that was the best place available," says Yonat. "We even got permission from a rabbi to put her in a non-Jewish home." But Keren could only stay there until she turned 14, and then her parents had to find somewhere else for her to live. "We wanted to decide for ourselves where she would go, we did not want social services to choose a home for her," says Yonat. Then the Levis found out about Aleh, a unique project set up in 1982 by Rabbi Eliezer Fishoff - whose own child became severely brain damaged after a bout of meningitis. Fishoff, together with five other families from Bnei Brak, sought a solution for their children that would take them out of state-run hospitals and give them a better chance at life. "At first it was just a day clinic," says Ahron, who works in the kibbutz's cheese factory. However, it did not take Aleh too long to develop into a full-fledged hospice with a school, offering housing and therapy for children with neurotic and cognitive disabilities, degenerative diseases and brain damage. TODAY, Rabbi Yehuda Marmorstein heads the organization and over the past 24 years it has developed tremendously in terms of its size and facilities. There are currently close to 400 children nationwide residing at one of the three Aleh campuses in Bnei Brak, Jerusalem and Gedera. The Jerusalem facility even provides treatments for newborns and housing for infants only a few months old. "We found contacts in Aleh and worked hard to get her a place," recalls Ahron. "We really believe in Aleh's approach." According to its publicity material, "Aleh believes that every child - no matter how severe his disability - deserves the opportunity to do the things that kids do." Through a variety of intensive conventional therapies - occupational, speech and physio - as well as many innovative therapies such as music, art and hydrotherapy, Aleh makes sure it reaches its goals. Keren was placed in the Bnei Brak home at the age of 14. However, as the state dictates, she would no longer be eligible to live there once she turned 21. Yonat and Ahron Levi were not looking forward to placing her in one of several state-run institutions for mentally disabled adults, where she would have to stay for the rest of her life. "We visited some of the institutions and none were up to the standard of Aleh," says Ahron, trying to remain diplomatic about the old-fashioned and overcrowded state-run hospitals. Luckily, Keren will never have to experience one of "those" places because in February of this year she became one of the first residents to be moved into Aleh's latest project - a 100-dunam village designed especially to provide a home to physically and mentally disabled youth and adults in the southern part of the country. More than 250 patients are expected to eventually live in the all-encompassing village, which is located between the Merhavim junction and the development town of Ofakim, only a 30-minute drive from the Levis' kibbutz. Keren was allowed to continue living in Aleh's Bnei Brak center until now because not long after she turned 21, plans for the Aleh Negev project were set in motion. Now, two years after the ground-breaking ceremony in the presence of then prime minister Ariel Sharon - himself a resident of the south - Aleh Negev has become a reality for Keren and 27 other people with varying degrees of mental disabilities. WHILE STILL only in its initial stages, when the village is finally complete it will feature state-of-the-art hospital-equipped dormitories with only two residents sharing a room and enjoying a private bathroom, a hydrotherapy swimming pool, riding therapy stables, a safari park, as well as a therapy center, a special needs school and an agricultural greenhouse for light work. The center's facilities will not only cater to those living in the village but also to those with disabilities, both adults and children, across the country's entire southern region, which Aleh estimates to be some 450 people, 30 percent of whom are severely and profoundly disabled. The outpatient clinic will offer speech and occupational therapy, psychiatric counseling and even walk-in medical facilities for those in the local area. Plus, if all goes according to plan, the completed village will offer work opportunities to more than 500 doctors, nurses, therapists and other support staff living nearby. Costs for the first phase of the village are expected to reach $23 million, with the government and the Negev Development Authority laying out NIS 46.5m. and the rest coming in the form of donations from a host of private donors such as British JNF, the Sacta Rashi Fund, the Weinberg Fund and the Safra Fund. Aleh Negev's board members include such high-profile members as Maj. General Doron Almog (res.), wife of former US ambassador to Israel Sheila Kurtzer and Tourism Minister Isaac Herzog. "Six years ago we saw that our clients wanted to stay with us even after they reached the age of 21, and we had to find a suitable residence," explains Marmorstein as we sit in the sparkling new facility, which was officially inaugurated in a ceremony earlier this week attended by Shimon Peres and other dignitaries. "There is still much these people can learn and there is a lot they can achieve," he continues. "We want to give them a good life and offer something to the community." Marmorstein and the others involved in the establishment of this unique project are extremely proud of what they have achieved here. Tzvi Herskowitz, the head of Aleh's international public relations, shows me around the village which, except for a handful of brand new buildings, is still essentially a messy building site. "Over there will be a swimming pool and behind it, the greenhouses where those with mild disabilities can work," says Herskowitz as we overlook a muddy pit, the midday desert heat beginning to rise. "A European coffee company wants to set up a factory on the site, too; it will probably go over there," he continues, pointing southward to a large open space. Ofakim sits only a few kilometers away and the town's high school is only a five-minute walk from here. HERSKOWITZ takes me into a near-finished dormitory wing. Each bedroom has a specially designed en suite bathroom with an adult sized changing table for caregivers to help patients get dressed. The wing resembles a luxurious US hospital, with bright colors painted on the wall and large windows letting in lots of light - certainly nothing like I have ever seen in Israel. The building is split in two, he explains. Living quarters on one side and therapy rooms on the other. Residents do not have to go out into the scorching heat in order to receive their treatments. Some of the builders working on the dormitory greet Herskowitz. In one of the finished rooms, they point out a newly placed dedication plaque from one of the facility's donors. He smiles a frustrated smile. "I knew they would not put it up in the right place, I tried to tell them how to do it by phone yesterday but they completely misunderstood me," he sighs. In the already built part of the village, there is much activity. On the day of my visit, a group from JNF Britain participating in an antique car rally from London to Jerusalem is expected to arrive shortly. The charity has already raised $1m. for the project and is committed to doubling that over the next four years. The oldest participant of the rally is Hilary Clive, 92. A veteran of close to a dozen such car rallies raising money for projects in Israel, one of the newly-built rooms is to be dedicated to his late wife, Sadie's memory. Even as these antique cars arrive in the village, most of the residents are completely oblivious to it and the ensuing dedication ceremony. Instead, they are deeply involved in their regular activities - painting, recycling paper and other kinds of artistic therapies. Israela Nevo, a former social worker who is now the director of Aleh Negev, explains that, "everyone can be productive, we just have to find his or her potential." She points out a young man who is sitting patiently with his finger on the button of a food blender filled with strips of paper. "Take him for example, we found that he loves to feel things that vibrate and he can sit there with his finger on the button for hours," she says. The paper he is blending is then transferred to a large container filled with water where another resident stands with a therapist sifting the paper through a strainer until it disintegrates. "They produce all kinds of paper to make notepads, stickers and wedding invitations," says Nevo, handing me examples of the recycled paper created by these mentally disabled individuals, who somewhere else might just be sitting and watching TV. "We like to challenge everyone's ability," says Sonnie, an art therapist from nearby Moshav Tidhar. She is sitting with several of the center's residents kneading clay into different Judaica shapes. "We use a variety of materials such as silk, clay and paper to make beads and mobiles," she says. "It really gives them hope and lots of happiness." Sonnie, a therapist with disabled adults for more than 20 years, says there is nothing else in Israel that compares to Aleh Negev. "The other places I worked at were terrible," she says. "There are resources here unlike any of the other places in Israel. Everyone here gets the best." ONE OF THE village's residents is Eran Almog, 22, son of Maj. General Doron Almog (res.), former head of the IDF's Southern Command and Gaza. Also the chairman of Aleh Negev, General Almog is a strong advocate for the rights of the mentally and physically disabled population in Israel. "In Israel, these people make up about 1⁄2 a percent of the population," says Almog. "They are the weakest group in society. None of them have ever been on a plane or traveled, they will never get married or continue their family lines. These people cannot do anything for themselves, they do not speak out and will never go and protest for their rights outside the Knesset. Their problems are those of their parents and that is why we have to protect them." Eran, who is autistic and mentally disabled, had been living at Aleh's Moriah Institution in Gedera since the age of 13, learning at a school in nearby Rishon Lezion. He was transferred to Aleh Negev in February. "A year ago I got a letter from the Rishon Lezion municipality telling me that Eran could not continue his schooling there," says Almog. "There was nothing to say of what would happen to Eran after he turned 21, the letter only said what he could not do. There seemed to be no solution." Like Keren Levi, however, Aleh presented the Almogs with a viable solution that would give Eran a safe and productive environment to live in after the age of 21 for the rest of his life. "This village was built because there are no other options for severely disabled people," continues Almog. "Those with light disabilities can continue living in the community but those with severe disabilities can't be part of the community." Nevo agrees with Almog, adding, "Research shows that disabled people should be mixed in with society, but Aleh caters to those who are not able to participate in the community. Our goal is to bring people from the outside community into the facility." Referring to the nearby high school, Nevo says: "The volunteers provide a lot and we are developing a program with the high school that will add points to the matriculation exams of students who volunteer with us." AT THE CEREMONY organized for JNF's car rally, General Almog talks in perfect English about his personal story and his battle to give his son a better life. "He was named for my brother Eran who was killed in the Yom Kippur war," begins Almog. "I was fighting in the Sinai during that war and Eran led a mission against Syrian tanks in the north. I only discovered at the end of the war that he had been killed." Almog continues, highlighting the highs and lows of a truly heroic army career that has even led to him being accused of war crimes by a London-based Palestinian group that prevented him from visiting England last year. He then goes on to admit to the small crowd that his biggest challenge and the one that taught him about sensitivity and feeling was learning how to deal with his son. "Born on January 6, 1984, we expected Eran to fulfill every Jewish parent's dream to be smart, intelligent, brave, beautiful and successful, but he has never even called me father," says the former general. "However, he is one of the most influential persons in my life, his shouting silence has taught me how to feel. "I vowed never to leave a wounded soldier in the field and with my son, I have found myself in the same position," he continues. "We can improve the quality of their lives, we can do something good on behalf of the purest, most innocent people in the world who never did anyone any harm." Rabbi Marmorstein adds: "I am happy that we are finally here but I still feel that we have not done enough for these people. We could not help the ones who lived in crowded institutions up till now and that is what really hurts me." "There still needs to be more awareness of the plight of these children," finishes Nevo. "I hope this village will cause people's attitudes to change and people will be more accepting." As for the Levi family, their goals for Aleh Negev are much more simple. "We did not want to think about what would happen to Keren if Aleh Negev had not happened," says Yonat. "Today I am much more relaxed than I ever was knowing that Keren is there," Ahron adds. "The concept of Aleh Negev means that Keren now has a home for the rest of her life."