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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

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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.

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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.

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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  • frimet roth

    Eric, thank you for sharing your disturbing experiences as a parent of a profoundly disabled child in Israel. Your and our struggles are well kept secrets here. The public generally has no contact with our realities. It presumes that we are showered with government assistance and that institutionalization of children like ours is a very last resort when living at home is simply not an option. I still remember being advised nineteen years ago by a neurologist to abandon my daughter to an institution. I also recall a friend (or, rather, ex-friend) who banished her five year old daughter to an institution eighteen years ago and was recently described by Bizchut as “a very devoted mother” because she was suing the government for something or other regarding her child’s care.

    Would it be alright if I circulate your string of horror stories on my blog (http://frimetgbu.blogspot.co.il/) in order to enlighten our compatriots?
    Also, would you be interested in our speaking by phone to compare notes?

  • Arlene Seidel Abrams

    Some years ago the pharmaceutical industry declared that they had developed meds to counter the problems of people mentally deficient. Most of our institutions were closed. Today….The stabbings, attacks, living on the street….those are people who do not have a family to take care of them and do NOT take their meds.
    There is a place in society for institutions to care for those who cannot care for themselves and do not have families to perform those tasks.
    The concept is sound….that institutions employ inadequate people to tend to those in need….that has to be monitored and corrected.

  • My son has an expiry date. But when you have a thirst for life, to continue the analogy, you’ll drink spoiled milk. Living in Israel with a catastrophically disabled child has been difficult to say the least, especially when your origins are Dutch, where the system can provide monumental levels of care, including paying parents for the extra time and effort involved in caring for such devastated children.
    My son, who has no measurable level of cognition, no bodily control whatsoever and a host of life-threatening disabilities, including Ohtahara syndrome, has been cared for by myself and his mother, his brother and sister, at home his entire life. The level of frustration in dealing with governmental agencies such as Bituah Leumi and Misrad harevachah , who are supposed to provide assistance, is astronomical.
    I could write an entire book about the situation (and have published a number of books of poetry on the lives and deaths of severely disabled children).
    Repeated requests for help were ignored, finally only through personal the connections of a high-placed lawyer were there responses. Those ranged from, ‘But, as the father, don’t you want to take care of your son?’ (Bituah Leumi) and ‘We know what’s best for your child’ (high placed representative of Misrad haRevachah). My last run in was with the special committee of the social services for exceptionally disabled children. Social workers wrote up extensive reports, with visits from physicians, more social workers, nurses, physiotherapists. Reading the report is a shock, like the screenplay of a horror movie. “This will finally do it!”, I thought. Push them over the edge to where reason prevailed. In the committee meeting there sat a psychiatrist, physician, social worker and several more coordinating child welfare and medical professionals. After 16 years of 24 hour a day care of my son at home, life-threatening crises warded off time and again, a quality and especially longevity of life which astounds his primary care doctors, the committee saw fit to spend 45 minutes trying to convince me that now was the time to finally put him in an institution, because after all, ‘It’s what’s best for him’. After all the extensive research, probing, visits and documentation of our family life, the final written recommendation of the committee was that our situation, ‘should be looked into’. The report has been sitting on the desk of the regional social worker for two years now. You might guess what my attitude is, facing, especially in these recent days, further life-threatening issues as my son has transitioned to in-home hospice supervision: I am so done with your ‘help’.

    • Eric, I would be very interested in learning more and sharing with you what I have learned. If you care to discuss, please email me at roth.jerusalem@gmail.com

      Thanks
      Frimet.

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