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May 12, 2016 6:54 am

Institutionalization: Why Does Israel Continue to Be Infatuated With This Cruel and Archaic Approach?

avatar by Frimet Roth

An Israeli hospital. Photo: Wikimedia Commons.

An Israeli hospital. Photo: Wikimedia Commons.

Israel just can’t seem to shake its infatuation with institutionalization.

Throughout the developed world, this cruel and archaic approach to caring for people with disabilities is being eradicated. In its place, citizens are being returned to their biological families, or to adoptive families or to small group homes within the community. This includes people with severe disabilities. Funds that sustained those rapidly-disappearing institutions are being diverted instead for care and therapy administered at home.

But Israel marches to its own tune.

In the Jewish state, that behemoth of institutionalization, Aleh, is allowed to expand, tightening its grip on the population with disabilities and on the public sector resources that come with it.

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Moreover, new sources of funding and support keep being given to it. Starting with our prime minister and continuing on to our Ministry of Welfare, then to the JNF and even to NGOs that champion the rights of people with disabilities, everyone supports Aleh.

The lion’s share of government funding for Israeli citizens with disabilities goes to institutions, according to a major 2014 study by the Joint Distribution Committee. The evidence indicates that Aleh alone receives a whopping $24 million annually.

Yet last month a red line was crossed when the Ministry of Education announced that Maj. Gen. (res.) Doron Almog will be a recipient of its Israel Prize for lifetime achievement and exceptional contribution to the nation.

Almog is getting the prestigious prize not for his undoubtedly stellar military service to the nation but for “the enormous contribution of the village Aleh Negev – Nahalat Eran, a rehabilitation village for the brain-damaged which he founded.”

That’s the institution that was to serve as a home for his son, Eran, who was born brain-damaged. (Shortly after its completion, Eran died.)

In its background notes to the award, the Ministry says, “Aleh Negev-Nahalat Eran has become a groundbreaking setting for children and adults with mental and developmental limitations.”

How appropriate is that word “groundbreaking”? It has been a favorite adjective of Aleh’s PR machine because it impresses an uninformed public. But Aleh is truly  “groundbreaking” in that other advanced countries don’t do what it does. And for irrefutable, professional reasons.

Life in Aleh’s “residential villages” as they are euphemistically referred to, is a sad, detrimental, and sub-standard one in the way that life in any institution is. (I addressed this in a recent blog post: “Perhaps you *can* fool everyone all of the time”.)

Back in 2008, Bizchut (“The Israel Human Rights Center for People With Disabilities”) published a scathing attack on institutionalization in a book entitled Land of the Limited Possibilities — the Right of People with Cognitive Disabilities to Live Within the Community. It recounted the horrific history of institutionalization in Israel, citing reliable professional condemnations of it along with profiles of residents who had suffered in Israeli institutions.

About Aleh Negev, Bizchut wrote this:

…before the Shavuot holiday, Liat [a 31 year old resident] went home with her mother [who traveled six hours to bring her]. When her mother tried to shower her, Liat refused to remove her blouse, although she usually enjoyed showers. After she had finally undressed, her mother was shocked: Liat’s entire back and stomach were covered in scratches, bruises, and hematomas while her left arm showed a strong bite mark. The severity of the injury prompted the family to lodge a complaint with the police after the holiday. Since the incident Liat shows signs of trepidation whenever she leaves the house and is fearful of showers and the toilet which has necessitated her return to the use of diapers. As a result of the report to the police, Aleh Negev conducted an internal investigation and several staff members were fired.

There is no reason to be shocked by this anecdote. Such occurrences are common in large institutions and are central to the campaign to do away with them. Aleh Negev has nearly 200 residents; Aleh’s four institutions house a total of 800.

Experts in the disabilities field, here and elsewhere, are united in the view that institutional care’s time has passed. “Institutions are poor substitutes for a nurturing home life, even if they are well run and monitored,” UNICEF writes in its annual State of the World’s Children report for 2013.

The Ruderman Family Foundation, a Jewish philanthropy with offices in Boston and Israel, has spearheaded a campaign for the inclusion of people with disabilities in Israel’s general community. As such, it might have been expected to lead the opposition to the Aleh juggernaut. In fact, just a few months ago, Jay Ruderman, its president, wrote that Israel needs to confront multiple challenges in this area:

And what are those challenges?  First and foremost, living independently. Today, there are 10,000 Israelis with disabilities living in institutions and if you’re an Israeli with disabilities, you have few choices for independent living. You live with your parents for your lifetime with no adequate support or in a segregated setting, typically in severe poverty.

However, instead of rescuing those “10,000 Israelis with disabilities” from the plight it laments, the Ruderman Foundation published an article on its website praising Aleh.

The harm to children from institutionalized care is extensively documented. A 2009 study by one of the world’s leading independent children’s rights NGOs, Save the Children, argued that “several successful models of family and community-based care have already been developed.”

On paper, Israel shares those views. Our Equal Rights of Persons With Disabilities Law (1998) mandates equality for the disabled and the right to make decisions about his life.  A 2000 amendment to the Welfare (Care of Retarded Persons) Law, 5729-1969 requires that preference be given to residences within the community when placing individuals outside their homes.

Then there’s the matter of Israel’s international obligations. In 2012, Israel ratified the United Nations Convention on the Rights of People With Disabilities, which guarantees their right to live within the community and to be accorded “access to a range of in-home, residential and other community support services… to prevent isolation or segregation from the community.”

Several Israeli experts are outspoken opponents of institutionalization. Prof. Arie Rimmerman, for instance, from Haifa University’s Faculty of Welfare and Health Studies, lambasts Israel’s exclusion of people with disabilities from the general community. He cites studies showing that residents of institutions transferred into the community significantly improved their quality of life, health, social skills, and behavior.

Surprisingly, those laws, expert warnings, and dire statistics have failed to make a serious dent in Israel’s attachment to its flourishing institutions.

Even the rise of Lumos has not impacted our sordid status quo. Founded by renowned author, JK Rowling, in 2004, its stated credo is: “No child should be denied a family life because they are poor, disabled or from an ethnic minority. Lumos works to support the 8 million children in institutions worldwide to regain their right to a family life and to end the institutionalization of children.” [More can be found on the Lumos website]

Lumos is an organization dedicated to seeing that become a global reality by 2050.

Whether or not Doron Almog or Israel’s Ministry of Education are aware of the above facts is an open question. But there are clearly ample Israelis around who recognize the absurdity of this choice of award recipient for the stated reason. Will they respond to this?

For some this choice may matter little or not at all. But for others, it could not be more crucial.

As mother to a 21-year-old daughter who is profoundly disabled both cognitively and physically, as well as blind and epileptic, I am one of those. My life and the lives of my entire family are deeply marred by Israel’s infatuation with institutionalization. Like JK Rowling, we and the many other Israelis who see institutionalization’s dire shortcomings will not desist until this sad situation is relegated to the history books.

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