Our daughter, Chaya, just turned eighteen. We didn’t celebrate. And, sadly, she didn’t protest. Because 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 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 transferring them to 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 over 600 physically and mentally disabled children and adults.
Many see this as an achievement. 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, Aleh Negev, is located in the desert, far from major population centers and from most of the children’s parents and siblings.
Aleh’s latest PR release currently on this website, avoids the word “institution”, referring to Aleh Negev only as “the campus.” The piece laments the “heavy stigma surrounding the disabled in Israel”. It then presents its solution: nursery and kindergarten classes for non-disabled children housed on its “campus”, where “twice a week a number of Aleh children join the class”.
The piece sheds no light on the life of those children during the remainder of the week in an isolated facility with over 130 disabled residents.
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 website adds that its operating budget is about $30 million, of which 80% is provided by the government; the rest is private contributions. Capital development projects, according to the site, excluded from operating budget numbers, receive 50% 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 institutions 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 process is well underway in Europe. Norway was the first to close its institutions for the cognitively disabled. By 2005, Sweden and the UK had followed suit. Canada and New Zealand had done so 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. ), in which Israel’s Supreme Court affirmed the right of even the severely disabled to be housed within community.
In 2012, Israel ratified the United Nations Convention on the Rights of People with Disabilities which affirms the right of people with disabilities to live within the community, and to have ”access to a range of in-home, residential and other community support services… and to prevent isolation or segregation from the community”.
The Commissioner for Human Rights of the Council of Europe clarified the meaning of ‘institution’ by saying it is
…any place in which people who have been labeled as having a disability are isolated, segregated and/or compelled to live together… or are not allowed to exercise control over their lives and their day-to-day decisions.
Aleh’s solutions are arguably inconsistent with Israeli law, the UN Convention and global best practices.
The fact that Israel trails the rest of the world in this area was manifest in the 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 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 noted that Bizchut representatives had visited Neve Yaakov a year before the raid. Though the organization had reported the abuse it witnessed there, police refused to respond without authorization from the Ministry of Health.
Lerner, author of the Bizchut book mentioned above, declared
There is no such thing as a ‘good’ institution; even the best of institutions intrinsically negate the rights of an individual.
Soon after that conference, a similar outrage made headlines when four staff members including a child psychiatrist and a head nurse working at Eitanim, a mental health center and psychiatric hospital near Jerusalem, were convicted of abusing residents, many of them autistic. The offenses included
Forbidding a patient to talk for a number of hours each day, as a punitive measure, and withholding treatment from a patient during his epileptic seizures on the grounds that he was “bluffing”…[forcing patients] to work while standing and be kicked by staff members; to eat on the floor, under the table; to remain in urine-soaked clothes for long periods of time; and, in the case of a patient who suffered from violent outbursts, to remain in a small, unventilated room for most of the day.
During a television interview in the wake of those convictions, Lerner addressed the conundrum of professionals who act in a depraved manner. “I know these individuals,” she said. “I know one of [the defendants] well on a personal basis. He is an exemplary family man.” Yet in institutions, Lerner explained, some function in “parallel universes; they have separate codes of behavior.”
Accounts of institutional abuse continue to emerge. In May 2013, two caregivers at Ilanit, an institution in Pardes Chana, were sentenced to prison terms for sexually and emotionally abusing the helpless. 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 view such cases as anomalies. But – without pointing the finger at any particular institution – each one can be seen as a potential invitation to abuse.
Multiple published studies from various countries indicate 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.
And 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 the city’s population with severe physical and mental disabilities: the same number since 2007. Countless families vie for the few available slots in their community. The solution usually offered by government social workers is a large, isolated, distant institution.
Clearly the problems do not lie solely with public officials.
Ordinary Israelis too often deny people with disabilities entry to their neighborhoods. In May 2012, the business paper Globes reported that nearly one-quarter of the planned new residential hostels met with opposition from neighbors in the period 2006 to 2011. While 75% of the public feels people with cognitive disabilities can contribute to society with the appropriate treatment, barely half – when asked in a survey – will agree to a hostel in their own apartment building.
We too have repeatedly experienced isolationist attitudes. But one instance remains vivid. When she was 12, we brought Chaya with us to the annual piano recital for her older sister’s class. Upon our arrival, the distraught music teacher asked: “Why did you bring her along?” She then requested that we “deposit” Chaya in one of the rear rooms. After we made it clear that if Chaya could not join us we would all leave, the teacher relented.
With each of Chaya’s birthday’s, our own 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.
But there is no better teacher of inclusion than facts on the ground. We should redirect our donations to organizations that champion the rights of citizens with disabilities.
And, of course, nothing can surpass welcoming people with disabilities into our homes, our businesses and our lives.
Jointly with her husband, Frimet Roth received the 2013 Ministry of Social Affairs Magen Sar Harevacha award.