Our daughter Chaya just turned 18. We didn’t celebrate. And, sadly, she didn’t protest. Chaya is blind, epileptic, wheelchair-bound and profoundly disabled, both cognitively and physically. Her birthdays are not happy milestones. With each one, the gap between her chronological and functional ages grows. Raising a child like Chaya is never easy or joyful wherever you live, but in Israel it is especially challenging.
Two Israeli organizations working with people suffering from disabilities recently marked milestones, too. Together they paint an accurate portrait of Israel’s special-needs population.
In December 2012, Bizchut-The Israel Human Rights Center for People With Disabilities celebrated its 20th anniversary. A few weeks later, Aleh, self-described as the “largest network of residential facilities for children with severe physical and cognitive disabilities,” marked 30 years of operations.
Bizchut has advocated, among other initiatives, shutting down institutions for the disabled and replacing them with in-community residences. It laid out that vision in a 2008 Hebrew-language book, “The Land of Limited Possibilities: The Right of People With Mental Disabilities to Live Within the Community.”
Aleh, on the other hand, runs four institutions housing more than 600 physically and mentally disabled children.
Some think this is a fine strategy. They may be unaware of how far removed from community life those residences are.
Aleh’s Jerusalem facility is planted in an auto-repair shop precinct. Its Bnei Brak branch evokes a large, crowded self-contained hospital. In Gedera, residents are relegated to a building on the city fringes, encircled by high fences. The newest and largest addition, called Aleh Negev, is located in the desert, far from major population centers and, in most cases, very distant from the children’s parents and siblings.
Aleh’s success is closely tied to its ability to tap into substantial charitable donations and government grants. Its Aleh Negev facility, a $42 million project, was built on land donated by the government. Aleh’s Web site adds that its operating budget is about $30 million, of which 80 percent is provided by the government; the rest is private contributions. Capital development projects, according to the site, excluded from operating budget numbers, receive 50 percent funding from the government.
In a promotional video on that Web site, Prime Minister Benjamin Netanyahu urges support for Aleh Negev, which, in his words, “is now being studied as a model to be emulated around the world.”
In reality, institutional residences like Aleh Negev are being eliminated from most Western societies. The handful of American states that continue to segregate their disabled in institutional-scale housing are under threat of legal action by the Department of Justice for violation of residents’ civil rights. The New York Times reported in September 2012 that the laggards — Georgia, Mississippi and Virginia — had begun to join the rest of the United States by transferring thousands of their institutionalized disabled to small in-community homes.
The same has happened in Europe. Norway was the first to close its institutions for the cognitively disabled. By 2005, both Sweden and the United Kingdom had followed suit. Canada and New Zealand completed the process by 2010.
Israeli law has the identical goal. The Equal Rights of Persons With Disabilities Law (1998) guarantees “equality to the disabled and the entitlement to make decisions relating to his life, according to his desires and priorities.” The right to live in the community is specifically dealt with in a 2000 amendment to the Welfare Law for Care of the Retarded, which states that when placing individuals in facilities outside their homes, preference must be given to residences within the community.
That legislation was bolstered by the Lior Levy case (Lior Levy et al v. State of Israel et al. 2008), wherein Israel’s Supreme Court affirmed the right of even the severely disabled to be housed within the community.
In 2012, Israel ratified the United Nations Convention on the Rights of People With Disabilities, which guarantees their right to live within the community. It adds that individuals with disabilities must be accorded “access to a range of in-home, residential and other community support services … to prevent isolation or segregation from the community.”
Aleh’s solutions are inconsistent with Israeli law, the U.N. Convention and global best practices.
The fact that Israel trails the rest of the world in this area was evidenced by recent revelations concerning Neve Yaakov, a private institution in Petah Tikvah housing 150 residents. It was shut down in October 2012 after 70 of its employees were arrested on charges over the alleged prolonged abuse of its disabled residents.
At an emergency conference in November 2012, Naama Lerner, Bizchut’s director of community outreach, explained why outside intervention by the authorities is rare: “The police view these institutions as having a separate set of laws. … We have been frustrated for years lodging complaints against institutions like T’lallim, Aleh Negev and others and having the cases dismissed.”
Lerner, the author of the Bizchut book mentioned above, declared: “There is no such thing as a ‘good’ institution.”
Soon after that conference, a similar outrage hit the headlines when four staff members, including a child psychiatrist and senior head nurse working at Eitanim, a mental health center and psychiatric hospital near Jerusalem, were convicted of abusing the residents.
In the wake of those convictions, Lerner addressed the conundrum of professionals who act in a depraved manner. “I know one of [the defendants] well on a personal basis. He is an exemplary family man.” Yet, in institutions, Lerner explained, some of them function in “parallel universes … [with] separate codes of behavior.”
Accounts of abuse continue to emerge. In May 2013, two caregivers at Ilanit, an institution in Pardes Chana, were sentenced to prison terms for sexual and emotional abuse of residents. The judge ruled that by encouraging their mentally and cognitively disabled charges to undress and sexually interact before them, the defendants took advantage of and humiliated the victims for entertainment.
It is always possible to see such cases as anomalies. But without pointing the finger at any particular organization, every institution can be seen as potentially an invitation to abuse.
Multiple published studies have found that accommodating special-needs people in small residences within the community ensures a significantly higher quality of life: fewer instances of abuse by staff, less self-inflicted injury, improved overall health and fewer behavior problems.
Yet according to the Ministry for Welfare, 12,500 disabled Israelis live in large institutions today.
Few alternatives exist. For instance, in Jerusalem there are only four residential apartments for those with severe physical and mental disabilities — the same number as in 2007.
With every one of Chaya’s birthdays, our old age creeps closer. The dearth of satisfactory living solutions for her now looms. Understandably, re-educating Israelis is a rising priority for us. Like Europe and North America, Israel can and must acknowledge the entitlements of citizens with special needs and the benefits of abandoning institutional care.
There is no better teacher of inclusion than facts on the ground. We should redirect our charitable donations to support organizations that champion the rights of citizens with disabilities.
And, of course, nothing can surpass our welcoming people with disabilities into our homes, our businesses and our lives.
Frimet Roth is a freelance writer in Jerusalem. Her daughter Malki was murdered at the age of 15 in the 2001 Sbarro restaurant bombing. With her husband, Arnold, Roth founded The Malki Foundation (kerenmalki.org), which provides concrete support for Israeli families of all faiths who care for a special-needs child. She and her husband were joint recipients of the 2013 Ministry of Social Affairs Magen Sar Harevacha Lifetime Achievement Award.