Whose interests are being served by institutionalizing mentally disabled citizens?
By RUTH EGLASHaleh negev 298(photo credit: Tsafrir Abayov)
Sunday, July 9 was supposed to be the happiest day of Smadar Messilati's life. Suffering from mild mental retardation since she was born, Smadar has been living at home with her parents or in a public institution for most of her life. When plans were set in motion to open a group home in the heart of her hometown of Holon, only a five-minute drive from her parent's home, the 28-year-old asked her parents if she could move in with her friends and live as "normal" a life as possible.
"It was supposed to have been the happiest day of her life, a day that we'd prepared for for many months," said Smadar's mother, Tovah Messilati. "She'd called all the family on Saturday and said good-bye. She'd told them all that she was finally going to be independent."
However, on the Saturday night before Smadar and 14 others were supposed to take up residence in the newly refurbished villa, allegedly residents of the surrounding neighborhood set the building on fire, causing serious damage and making the place uninhabitable.
"It was a big shock," says Tovah, who is an active member of Akim, the association for the rehabilitation of the mentally handicapped, adding that when Smadar heard about the attack, "she really cried. She has taken this episode really hard." Another Holon family, whose daughter was also supposed to have moved into the small hostel with Smadar, was also shocked by the vicious attack.
"When my daughter heard about the attack, she said to me, 'Mom, what would've happened if we'd been inside at the time of the attack? We would have been burnt,'" says Rachel Mizrahi, mother of Liran, 22, who is only mildly retarded. "My daughter understands clearly what happened, we are just trying to come to terms with it and are working together to calm our fears."
The families of the potential residents are also eager to meet with their children's neighbors to allay their concerns.
Despite what happened to the Holon hostel, both the Messilati and Mizrahi families are adamant that the attack will not deter them from moving their children into the hostel once it has been fixed up again.
"We have to send these people a message that we will not give in," says Mizrahi.
Adds Messilati: "I think the minute they move into the house, the neighbors will see what lovely people they are, how they are so quiet and would never hurt a fly."
What happened in Holon is not unusual, comments Dr. Haya Aminadav, director of services for the mentally retarded at the Ministry of Social Affairs.
"When the first hostel opened in Ramat Aviv 30 years ago, the neighbors there were also scared. There is not one place in Israel where a hostel was opened that people did not protest," says Aminadav, admitting, however, that the arson attack in Holon was a little more extreme than the usual court case.
"The courts have always supported us and in the end, the neighbors accept the homes," she continues. "If we listened to the people against the group hostels, then many of these people would still be living in institutions on the outskirts of the community. The ironic thing is that the people moving into such hostels usually already live in the neighborhood at home with their parents and are already an accepted part of the community. The only difference with the group hostel is that they will now be a little more independent."
INFORMATION from Akim suggests that there are upwards of 30,000 people with mild to severe mental retardation in Israel today. According to figures published on the ministry's Web site, there are currently 2,000 people with mild-medium mental disabilities living in an assortment of apartments, hostels and group homes within the community, and a further 6,400 people living in 58 larger institutions countrywide.
Aminadav, who has been a psychologist treating people with mental disabilities for the past 30 years, says emphatically that people with only mild to medium difficulties have a right to live in society with everyone else. This is a belief that is echoed by the mothers of Limor Mizrahi and Smadar Messilati, who both say their daughters are residents of Holon and have a right to live there like anyone else.
"Their needs are like everyone else," says Aminadav. "The feelings of belonging, of being part of a family, are feelings that even people with mental retardation have. For someone with low to medium mental retardation, the ideal living situation is a 'normal' one; they should live near their family in an area that they know. This is always preferable."
Aminadav points to a well-known phenomenon that was coined in the US more than 20 years ago: the NIMBY syndrome (Not In My Backyard). It surfaced when professionals and parents working with mentally retarded persons recognized the hell-like conditions of many large mental institutions and decided that individuals would fare better in community homes. The new policy of finding homes for mentally retarded persons in the community was greeted with enthusiasm from the public - but only at a distance. When people discovered that persons with mental retardation were moving in "next door," enthusiasm quickly waned and opposition set in.
"There is a real stigma," says Aminadav. "Those living around the hostel fear violence from the mentally retarded, or sexual acts against their children. They are suspicious of them. We as a society have not learned to accept people who are different."
WHILE Aminadav believes that in-community residence for those with mental and physical disabilities is optimal, she does highlight that there are some who are not better off in the community, but in institutions where they can be cared for and protected from society.
"These are the people who are really badly off, those that even with a personal caregiver cannot enjoy the facilities of the community on any level," she says, adding that today's institutions are designed to be homier than they were 20 years ago.
Aminadav is referring to institutions such as those run by Aleh, an organization that runs hospices for children with severe brain damage and which recently opened a new community in the Negev for those over the age of 21.
"The people we serve at Aleh Negev are not able to live in the community," says Israela Nevo, a former social worker who now directs the facility, which opened officially in June. "Here they can move around freely and get all the medical care they need."
She adds: "They can't go out to the store in the community, so we have brought the community to them. We hope that people in the area will come and use our facilities and services. The high school nearby can come and visit us and work together with us."
The plans for Aleh Negev - a 100-dunam village designed especially to provide a home to 250 physically and mentally disabled youth and adults in the southern part of the country - are vast. The completed village will eventually 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. And if all goes according to plan, the site will offer work opportunities to more than 500 doctors, nurses, therapists and other support staff living nearby.
However, there are those who are diametrically opposed to large, out-of-the-way institutions.
"It is unfair to use disabled people to boost an economy," says Frimet Roth, mother of a blind and profoundly disabled 11-year-old daughter.
"There is no reason to isolate anybody. Everybody thrives from home life situations; that has been proven," says Roth, adding that she believes the benefits of in-community residences far outweigh those of large institutions for the mentally disabled.
"People behave the way they do towards the disabled mostly out of ignorance," says Roth, referring to the recent incident in Holon. "We have to bring them into society or we will not be able to get away from the standard perceptions. If we keep people locked away then there will always be intolerance and indifference."
Roth also says that studies abroad, such as that conducted by the US Department of Health and Human Services and the American Federation of State, County and Municipal Employees, the largest public service employees union in the US, on the subject have proven that it is actually cheaper to keep the disabled at home or in smaller group settings than in large facilities.
However, those at Aleh disagree. Shlomit Grayevsky, director of Aleh Jerusalem for the past eight years, says small group homes are simply financially unviable and not realistic.
"It can't be done," she says. "These children have severe physical and mental needs, they have to have constant treatments from doctors, nurses and physiotherapists. How can the professionals get to several smaller locations scattered all over the place rather than one central location?"
"For the majority of our children, the only other option is a hospital," continues Grayevsky, adding that Aleh in Jerusalem makes sure the children are taken out into the community and that parents are fully involved in their activities.
But both Roth and Sylvia Tessler-Lozowick, executive director of Bizchut, the Israeli Human Rights Center for People with Disabilities, discount the arguments made by Aleh and the Ministry of Social Welfare. They say everyone has a right to live within the community.
"No one has the right to send these people to institutions," says Tessler-Lozowick, highlighting a 1996 Israeli Supreme Court declaration that reads: "The disabled person enjoys equal rights.
He does not exist outside society or on its periphery. He is a regular member of the society in which he lives. The goal of arrangements is not to improve his lot in isolation, but rather to integrate him - occasionally through affirmative action - in the regular fabric of society." The Equal Rights for Disabled Persons Law put into circulation by the Knesset in 1998 reinforces this ideology.
"I really wonder why they believe it [community living] cannot be done when it is done very well elsewhere," says Roth. Roth says that in Israel too, organizations such as Akim and Elwyn [which runs 48 supported group homes in Jerusalem and Herzliya] have successfully integrated mentally retarded individuals in the community.
"Seeing this institution go up after all these years is very discouraging and disheartening," says Roth.
"Children in Israel can grow up without ever seeing a mentally retarded person," finishes Tessler-Lozowick. "Is that the message we really want to send? That retarded people live in institutions? The people need to be in the community if we want to change perceptions."
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