A shofar message for Doron Almog

Image Source

On August 16, 2022, Doron Almog took the helm of the Jewish Agency.  

Since his nomination for that position, on June 16, 2022, Almog has been hailed as an Israeli hero. Here is the Times of Israel summarizing his claim to that status:   

Almog, 71, a past head of the Israel Defense Forces’ Southern Command, dedicated his life after leaving the military to running a widely lauded rehabilitation village in the Negev desert for people with physical and mental disabilities. ADI Negev-Nahalat Eran is named for his son Eran, who had severe autism and physical disabilities before his death in 2007... [Times of Israel, August 21, 2022]

Since then, hardly a week goes by without a news item about Almog and the Jewish Agency. They have all been unadulterated hagiographies. And occasionally when no such report appeared, he - or his staff - seem to have produced their own. 

So it's fair to predict that some will be enflamed by what I have to say about him.

Almog oversees two large, closed institutions (one of which he founded) named ADI, for people with disabilities ranging from infancy to young adulthood. Its motto: "It’s all in the name: ADI celebrates ability at every level, promotes diversity and insists on inclusion."

He does so despite growing global opposition to institutionalization of this population. 

And he does so despite the recent passage of a new Israeli law that, once implemented, promises to begin the mass transfer of people with disabilities out of the sort of warehouses that Almog champions.

One would have hoped that Yom Kippur and the self examination it encourages would stir Almog to reconsider this major "life achievement" of his. It doesn't seem so when you read his latest op ed, replete with content like this:

"After honoring my late brother Eran who was killed in battle during the Yom Kippur War and my late son, Eran, who was born with severe disabilities, my life philosophy has always been to never leave anyone behind. This applies to my approach regarding aliyah as well. That is because how we treat the vulnerable among us reflects our morality as a society... The absorption of olim should be a national responsibility... We must continue to work, in accordance with the government of Israel, to reunite families and bring olim home, no matter where they are in the world. It is also our obligation to ensure that Ethiopian olim become the absolute best version of themselves. It is what they deserve and what Israeli society needs." ["A full-circle journey: Bringing Ethiopian Jewry home", Times of Israel Blogs, September 28, 2022]

I would remind Almog that much of what he promises to deliver to our new olim has never been provided to our "most vulnerable" as he refers to our population with disabilities.

"Absorption", "reuniting families", is also a national obligation toward those with disabilities who are taken from their families and locked up in large, isolated, closed institutions because the government refuses to provide for their needs at home.  

I am not alone in this assessment. 

Recently an employee at ADI Negev visited (infiltrated?) one of the Whatsapp groups in which I am active. It's designated for people with disabilities, their families and activists in the field.  She said she was soliciting employment as an aide for people with disabilities. But she added her view of ADI Negev: 

"I am referring to ADI Negev, the Rehabilitation Village, a wonderful place for any age with one on one projects and programs." [My translation of the Hebrew source]

And after she received negative responses re ADI, she wrote:

"First of all I didn't request opinions about ADI Negev. The place is not a fortress. It is actually a village, suitable and pleasant for residents happy with many programs and choice and they create gift (sic) and go out and more. I am only asking that if any of you are seeking a worker, for independence with individuals, approach me." [Again, my translation from Hebrew]

Naama Lermer, a disabilities-rights attorney and founder of Hatnu'ah L'atzma'ut ("The Movement for Independence") and formerly of Bizchut, then posted to the same Whatsapp group in response [again my translation of the Hebrew source]:

I know ADI Negev well. I visited there more than once . It's an institution in every sense of the word. Many groups of residents with disabilities. With a uniform daily schedule. Without any real connection to the community. Some of them are cut off from their families because their families live very far away. People who won't experience what it's like to lick an ice cream in an ice cream shop in the mall. To buy clothes in a clothing store. To get on a train and see the view. Adults who spend most of the day sitting with construction games or children's toys. And it's sad. I wouldn't want to live like that. I wouldn't want my children to live like that. So I don't wish that on anyone else. I want more than creative works and children's games for them. I want more than a clean, tidy place. I want a real life for them. Even if their disabilities are very present."

Many of us have just heard the shofar blown at the close of Yom Kippur prayers. In his New York Times op ed this week, the former chief Rabbi of Moscow, Pinchas Goldschmidt, wrote:

And this is perhaps what the shofar, the ram’s horn that Jews blow on the High Holy Days, represents. According to the Bible, the shofar blow is the sound of freedom. It was historically blown at the beginning of the jubilee year — the year that freed all slaves and returned all sold ancestral property. The sound of the shofar blow is meant to remind us of both freedom and equality.

Let's hope that message will reach those, like Almog, who persist in their perversion of "freedom and equality" to include the warehousing of citizens with disabilities in institutions.

Progress on one front - regress on another

Last week, a significant new appointment was announced after its year long vacancy: Chairman of the Jewish Agency.

The Agency's selection committee voted for IDF Maj. Gen. (Ret.) Doron Almog. Its decision still must be approved by its board of directors which will convene on July 10 in Jerusalem.

Image Source: A 2015 promotional campaign on Facebook

Anyone who reads this blog will understand why the choice left me devastated.

Almog founded and operates large, closed, isolated institutions for hundreds of children and young adults with disabilities. Nevertheless, for the Israeli public he is an icon who can do no wrong. The kudos after the announcement have been streaming in on every mainstream and social media platform.

On a WhatsApp group in which i take part - made up of disability activists for people with disabilities and for their families - I saw a "share" of a Facebook post by Sivan Rahav Meir, a well known Israeli journalist, praising him to the sky. 

So I wrote the following to my co-activists (in Hebrew):

It's sad and infuriating to learn that Doron Almog won the nomination for chairman of the Jewish Agency. This man has acted tirelessly and for decades to entrench the institutionalization of children and adults with disabilities.

Where is the progress in the fight for in-the-community living for every citizen, when a person with this background is presented as a hero as Sivan Rahav Meir has done?!

Naama Lerner, a lawyer, formerly an official with Bizchut and now one of the founders of Hatnua L'atzma'ut, also known as Movement for Independence, responded with this (again translated by me from the Hebrew source):

I agree with you entirely, Frimet. But it's really not politically correct to say that. He has wall-to-wall support. Not just from Sivan Rahav Meir. He is presented as someone who has set up a marvelous life's enterprise.

It's a place that has cut off tens of people with disabilities from their families, people whose parents live in the north and they were placed in Aleh Negev [in the south]. It's a place that boasts of its connection to the community but is located in "nowhere".

And its connection to the community is expressed by groups of soldiers visiting to "make the pathetic children living there happy". It's a place that looks good physically but is emotionally very barren, isolated and remote. Truly sad.

And when another member jumped to Almog's defense, Naama added:

I am not judging him [Doron Almog] at all. I am judging the Ministry of Welfare that followed him blindly and didn't point out to him the error of his ways. Aleh Negev was founded at a stage when the Ministry of Welfare had decided not to establish any more new institutions (but to proceed with founding hostels).  But nobody could stand up to Doron Almog. So he established it and that's entirely not to the credit of the welfare system. It's a place [now operating under the name ADI Negev] that suffers from all of the usual maladies of all institutions. I have received complaints against it, I have been there, it's an institution in every sense of the word. And are the residents satisfied?  Who knows? They've never seen another life and aren't aware of alternative options. Ask the residents of Neve Ha'irus* and they too will say they are satisfied."

*To understand the reference to Neve Ha'Irus, click here to see several of my previous blog posts dealing with that disgraced institution.

Alongside the comments about Almog's appointment, there is another Israel-centric topic garnering far more interest. Sometime this week, a new, long-awaited law for people with disabilities is expected to be enacted by Israel's lawmakers. The draft was pushed through the preliminary readings stages in recent days to ensure its passage before the Knesset disbands this week.

It is being hailed as "historic legislation" on the WhatsApp group I frequent. The hope is it will advance the right of people with disabilities and their families to choose life within the community and will hasten country-wide de-institutionalization.

While it isn't perfect, for now this appears to be the best law attainable.  

Meanwhile on the home front, click here to view another "major" achievement, this one by my daughter Haya as captured on YouTube.

Look who's promoting institutionalization now

From the UN CRPD website

Last week I was quite optimistic when I learned of the scheduled cabinet debate regarding the proposed grant of tens of millions of shekels to Doron Almog's ADI Negev ["Ministerial scrutiny of Israel's largest institution for children with disabilities?"].   

I  progressed from that to elation when Haaretz, Israel's leading newspaper, published a piece (in Hebrew only at this stage) about the issue this past Friday [תוכנית להרחבת מוסד לאנשים עם מוגבלות מציתה מחלוקת: האם המקום פוגע בדייריו]. 

True, it was only guardedly critical of Almog and his institution for people with disabilities - but it was critical. And that spelled a sea change in the Israeli consensus. 

In its wake I toyed with this upbeat line for my tweet: "One Small Step - or One Giant Leap?" My more grounded husband assured me it was neither (see my Tweet).

And he was so right. 

Because today, the most powerful man in our government posted a tribute to ADI Negev and a veritable hagiography of Doron Almog. On his Facebook page! That's our prime minister to whom I'm referring. The man who is supposed to be tackling existential threats like Omicron, terrorism, Iran's nuclear activities. 

Yes, he actually found the time to promote the institutionalization of babies and children with disabilities far from their families in large, closed residences. 

And he did that with utter disregard for the UN Convention on the Rights of Persons with Disabilities. The treaty that Israel signed onto and then ratified in 2012. 

Today a more apt tweet would be "One Step Forward, Three Steps Back". 

Bizchut is urging everyone to elucidate the above for the prime minister, Naftali Bennett in a comment on his Facebook page. And yes, mine's already there.

Ministerial scrutiny of Israel's largest institution for children with disabilities?

Prime Minister Naftali Bennett chairs the first weekly cabinet
meeting of his new government June 2021 [Photo: Emmanuel
Dunand/Reuters]

I have written often and over a long period about the chain of institutions here in Israel called ALEH. 

It originally consisted of four residential facilities in different cities housing a total of some 800 babies, children and adults. 

I have never had anything favorable to say about the operation, to put it mildly. I am not a fan of theirs and am opposed to the core values for which they stand.

ALEH, as a chain of institutions for children with special needs, has pretty much disappeared as a brand name. On this archived website, you can see how they used to call themselves "Israel’s Largest Network of Care for Children with Severe Multiple Disabilities" as if that were something to be proud of.

No longer. 

About two years ago, Doron Almog, who established ALEH's Negev branch, announced that it would thenceforth be partnering with the Jerusalem branch under the name ADI and under his leadership. The remaining two branches, one in Gedera and the second in Bnei Brak, would operate as part of a separate entity under the ALEH name and under the leadership of Rabbi Yehuda Marmorstein.

The entire transformation has been characterized by fog and confusion.

This post is triggered by something unusual: a discussion that was due to be held in Israel's Cabinet today (Sunday, December 12, 2021). It's not clear to me that the discussion happened or whether it was pushed off. We will probably soon know.

The institution formerly called ALEH Negev, now branded ADI, has enjoyed "etrog" status in the Israeli government as some of my previous posts indicated. 

See for instance: Aleh vs ADI [November 17, 2020]; On voluntourism [January 25, 2018]; Is this why our government loves Aleh? [January 15, 2018]; A bad idea dressed up as good news [January 23, 2017]; Cultivating the Negev on the backs of the most vulnerable Israelis [August 3, 2016]; Aleh 101 [January 13, 2016] and more.

The following letter which appeared today in a Whatsapp group to which I belong is being widely circulated among Israel's activists for the rights of people with disabilities. It is written in Hebrew but here is an unofficial English translation:

At a cabinet meeting scheduled for today, December 12, 2021, the following proposal will be discussed: That tens of millions of shekels be granted to ADI Negev, an institution for people with disabilities. The proposal's details are unknown to us but the very intention to allocate millions of shekels to this institution raises concerns that this is a plan which contravenes, in whole or in part, the International Convention on the Rights of Persons with Disabilities, which was ratified by the State of Israel in 2012.

One of the treaty's core tenets is the right to live within the community, the right to fully participate in society and and the right to inclusion in society. The Convention, and its official interpretation, oppose outright the existence of institutions and of residential frameworks with institutional characteristics. These include, among others, residences with a large number of people with disabilities in one place, segregation away from the general community, the inability of the individual to make decisions - even the most basic decisions - regarding his life and so on.

Therefore states that have ratified the treaty are required to prepare a plan that will eventually lead to the closure of all such institutional frameworks for people with disabilities, while developing community services for them.

 

Needless to say, international law prohibits the allocation of resources to further the operations of institutional frameworks.

It will be recalled that even the international committee appointed by the Ministry of Welfare a decade ago, ordered the closure of all institutions within a decade.

Yet, despite all of the above, instead of closing institutions the government [of Israel] is now acting to expand existing ones.

The ADI Negev institution is home to over 150 people. Over the years, more services have been added around this institution, all of them intended for people with disabilities, including employment opportunities. This lifestyle, involving the concentration of people with disabilities in one place, where they live and work - and all of this far from the "normative" community - contravenes international law. 

Every addition of resources to the institution and to the segregated services surrounding it (excluding the rehabilitation hospital) contravene the international treaty and the values of equal human rights.

We therefore call upon the Ministers to oppose this decision today pending a transparent public debate and the clarification of the decision's details and of its compliance with the guidelines detailed above.

The extremely well-connected Doron Almog who heads the operation can't be too happy today.

Self-promotion and Holocaust Day

Image Source: ADI website

Nothing is off limits, it seems. No topic, no matter how sacred, is deemed by Doron Almog and his PR team as unrelated to the relentless campaign they wage to entrench institutionalization in Israel.

And so today, on International Holocaust Remembrance Day, they turned to nazism's evil as a defense. Yes, you read correctly: defense of the practice of removing people with disabilities, even children and babies, from their families to be locked up in large, isolated institutions for the remainder of their lives!

Readers, if you see any justification for that practice in the evil of nazism, please enlighten me! (I warn you, your chances of success are nil).

In case you are incredulous as to the ADI shenanigans and suspect I exaggerate, here are a couple of verbatim excerpts from ADI's two recent media statements. One, apparently, would not suffice.

Almog mentions the German youth who volunteered at Nahlat Eran as a gesture of atonement for the sins of their people during the Holocaust: 

"By volunteering in Israel with the most vulnerable members of our society, they are breaking the silence and making the exact opposite statement made by their grandparents just a few decades ago – that they consider Jews to be their brothers, that all people are equal, and that as humans, we are mutually responsible for one another.” ["Descendants of Holocaust perpetrators seek atonement in Israel", FORWARD, January 26, 2021] 

Excuse me for wondering. If "all people are equal", why are our most "vulnerable" as ADI enjoys labeling people with disabilities, not "equal enough" to merit a life within a family and community?!

And here is the second post: 

“Their grandparents [the volunteers] were indoctrinated in racist ideology. They thought they were the superior race. In 1939, Hitler rounded up disabled people and murdered them. Here, their grandchildren learn that we are all equal. That every life is precious.” [Facebook]

Once again, forgive my denseness. I just can't fathom how the separation of babies and children from their parents and siblings to languish in institutions demonstrates that "we are all equal. That every life is precious."

I urge you to call out the supporters of the vile practice of institutionalization - Israel's ongoing, thriving evil. They will persist in disseminating the above distortions and lies unless we raise our voices..

Deinstitutionalization, Aleh and ADI

Mandy Leighton Bellichach is the Chair of Bizchut's Board
[Image Source]

Bizchut, the leading organization devoted to promoting the rights of people who have disabilities in Israel, sent out a mailer this week emphasizing its focus on deinstitutionalization. Music to my ears!

Their message ended with this:

We help people and their families handle the many bumps on the road from the institution to a life of dignity and equality in the community. In the year 2021, Bizchut's goal will be to double and even treble the number of  people with disabilities who will receive assistance to live - like everyone else - within the community... [Hebrew original - my translation]

Now juxtapose that with the two large institutions, the places formerly called Aleh Negev and Aleh Jerusalem, both now renamed ADI which Doron Almog now heads. 

He is expending great efforts to promote and fundraise for them. He has dwarfed Aleh which, as I've written earlier, now consists of only the Gedera and the Bnei Brak branches and is lagging woefully behind in its PR. 

With Rabbi Yehuda Marmorstein at its helm, Aleh's Facebook page has for the past five days sported a link to its purported website. But when one clicks on it, the ADI website comes up.

Here's hoping this "battle" for our children and young adults with disabilities results in a victory for neither of the combatants but rather for Bizchut and deinstitutionalization.

Aleh vs ADI

Here's my update re the slugfest underway at Aleh. And my bet is it's the only update you'll get!

Neither side is clarifying what is going on or why. For now, I can only add that Doron Almog and his cronies have staked out the Aleh branches in the Negev and Jerusalem as well as the "Neuro Orthopedic Rehabilitative Hospital" alongside Aleh Negev which is slated for completion in 2021. 

He posts his PR material on a Facebook page under the name ADI - Advancement of People with Disabilities and Rehabilitation for All. From there he links to a new website: ADI-Israel.org 

Rabbi Marmorstein, his apparent adversary, has staked out Aleh Bnei Brak and Aleh Gedera. As he states here https://aleh.org/branches/

"The rehabilitative village in the Negev (“Nahalat Eran”) and the residential center in Jerusalem are no longer part of the ALEH network and have join forces under a new organization named ‘ADI.’ For more information about ADI Negev-Nahalat Eran and ADI Jerusalem, please use the following contact information [followed by a list of phone numbers in Israel, USA, Canada and UK]

On his Hebrew Facebook page, Marmorstein also claims to have opened a "new campus" which, he boasts, was recently visited by a couple of dignitaries from Ariel University. Here is my English translation of his report of that tour. There is no official translation anywhere of that since Aleh no longer seems to have an English language Facebook page:

"The CEO of Ariel University, Mr. Yoram Shai and our dear friend, Yehudah Drasinover, the Internal Controller of the University visited the new campus of the "Aleh" chain, In the course of the tour they saw up close the devoted care and huge investment in the dear children.
Yoram Shai said on the tour that the registered patent of Aleh is the professionalism and the faith in the special child. 
From Aleh comes the call to the entire world to do everything to improve the quality of life of everyone who is dependent on others 
Rabbi Yehuda Marmorstein told them that this is an emotional day for him and the beginning of cooperation between the "Aleh" chain and Ariel University."

The post elicited one comment from someone who asked: "Where is this new campus located?"

No response from Aleh.

However today Aleh's Facebook page mentions some "emotional installation" created by resident children which is situated "at the entrance to the new Aleh campus in Bnei Brak". No further details were provided.

The above report did not appear anywhere in English. That's because there no longer is an English Aleh Facebook page. It was removed last week when Doron Almog announced that he was taking over two of the Aleh branches - Aleh Negev and Aleh Jerusalem - and renaming them ADI - Advancement of People with Disabilities and Rehabilitation for All

Shortly afterwards an English language Facebook page under that name was posted: https://www.facebook.com/adiisraelrehab/

There he offers a long winded version of the split, his own accomplishments and a fantasmical summary of his institution's accomplishments replete with catch phrases like "multiple disabilities and complex medical issues", "fully inclusive", "to reach their fullest potential", and all the usual Aleh jargon.

I fear that this slug-fest may evolve into a tug of war over residents. Each camp may resort to more aggressive "recruitment" tactics to enlarge its number of residents and government funding. Marmorstein has been known to to call at least one parent urging him to hand over his child - that was related on an Aleh PR video clip!

Back at home, we have finally hooked up with a circle of SCN2A families In Israel. 

I had been hunting for just this sort of support ever since we received the news of Haya's genetic mutation in August, 2019. I found them via the global support group about which I've written in the past.

We are six families scattered around Israel and I've already exchanged a flurry of Whatsapps with them in the 24 hours since joining. We plan to have a Zoom gathering tomorrow night. 

Their children are all much younger than Haya and I hope when they hear how profoundly disabled she is they won't be horrified. I'll try to reassure them with the knowledge that medicine is better equipped today to treat our children's symptoms than it was 24 years ago when our nightmare with Haya began.

Anybody interested in joining can contact me at frimet.roth@gmail.com. for details.

You can't cherry-pick your scientific data

Institutionalized children as depicted in "The science of
early adversity" (The Lancet) quoted in this post

A recent promotional piece ["Joint Educational Activity with Southern Israel Rehabilitation Centers" | August 31, 2020] on the ALEH website describes how its Negev/Ofakim rehabilitation center

was proud to host a forum of health-related professionals from Ashdod’s Barzilai Medical Center, Ber Sheva’s Soroka Medical Center and Macabbi HMO’s Bayit B’Lev... A joint initiative of the various department directors, the forum aims to hold bi-monthly meetings, provide academic activity and ensure that professionals in health-related fields receive ongoing updates regarding advancements and breakthroughs in matters concerning rehabilitation... Discussion moved on to the current COVID-19 crisis and complications stemming from the more serious incidents of illness. Apart from the immediate need to save lives after exposure to the virus, the group discussed and reviewed the authentic need for rehabilitation after initial recuperation...

In their Hebrew Facebook version of this article (which I am translating now to English) but not in the English version quoted above, they then say

"The forum serves to strengthen the link and cooperation between the departments in the hope that they will progress to joint research. Likewise, core subjects of  rehabilitation are being dealt with, challenging clinical cases are presented along with brainstorming sessions to reach solutions".

For an enterprise that prides itself on partnering with "scientific experts", Aleh does a studious job of ignoring the reams of scientific data, relating to the deficiencies of institutionalization - Aleh's primary activity.

Cherry-picking the scientific data is simply not on. Deleting scientific findings to suit your goal of entrenching and expanding your large, closed institutions is deplorable.

Here are just a few of the reputable articles that Aleh.has chosen to disregard.

Ending institutionalisation of children | The Lancet (Editorial) | Published:July 25, 2015

"Childhood is a time when the seeds of a person's future health and wellbeing are sown. Ideally, it happens within a family setting that provides individualised care in a loving, safe, enriching, and happy environment. Sadly, more than 8 million vulnerable children worldwide do not have access to such care and grow up in large institutions or orphanages. Such environments share conditions that can be detrimental to children..."

Institutionalisation and deinstitutionalisation of children | Niall Boyce, Jane Godsland, Edmund Sonuga-Barke | The Lancet Child & Adolescent Health | Published: June 23, 2020 (Archived)

"...This Lancet Group Commission advocates global reform of the care of separated children through the progressive replacement of institutional provision with safe and nurturing family-based care."

The science of early adversity: is there a role for large institutions in the care of vulnerable children? | The Lancet | Anne E Berens, MSc, Prof Charles A Nelson, PhD | Published:January 28, 2015

"It has been more than 80 years since researchers in child psychiatry first documented developmental delays among children separated from family environments and placed in orphanages or other institutions. Informed by such findings, global conventions, including the 1989 UN Convention on the Rights of the Child, assert a child's right to care within a family-like environment that offers individualised support. Nevertheless, an estimated 8 million children are presently growing up in congregate care institutions..."

Children in Institutional Care: Delayed Development and Resilience | Monographs of the Society for Research in Child Development | Marinus H. van IJzendoorn and others | Published December 21, 2011

"...Children exposed to institutional care often suffer from “structural neglect” which may include minimum physical resources, unfavorable and unstable staffing patterns, and socially emotionally inadequate caregiver‐child interactions."

One very early such report appeared over 100 years ago on January 2, 1915 under the title "Are Institutions for Infants Necessary?", by Henry Dwight Chapin MD [online here]:

In considering the best conditions for the relief of acutely sick infants and for foundlings or abandoned babies, two important factors must always be kept in mind: (1) the unusual susceptibility of the infant to its immediate environment, and (2) its great need of individual care. The best conditions for the infant thus require a home and a mother. The further we get away from these vital necessities of beginning life, the greater will be our failure to get adequate results in trying to help the needy infant. Strange to say, these important conditions have often been overlooked, or, at least, not sufficiently emphasized, by those who are working in this field.

Writing about that century-old article, Berens and Nelson, referred to above, wrote in their January 2015 "The science of early adversity" piece that:

Following the publication of this [1915] article nearly a century ago, scientific studies began to document stunted cognitive, social, and physical development among children placed in institutions during key developmental years. In 1989, the UN Convention on the Rights of the Child (endorsed by nearly all countries, although not in the USA) drew upon scientific findings to generate international normative standards, asserting that “the child, for the full and harmonious development of his other personality, should grow up in a family environment, in an atmosphere of happiness, love, and understanding”.

Why don’t we hear ALEH making statements like these?

Is institutional care really the same as home, love, family?

Haya floating unaided in the pool 

I just discovered

Here are a couple of very recent Aleh posts I have just come across:

“This village [Aleh Negev - the Ofakim branch] was established with the express purpose of breaking the mold. The world needed a change—a place that would actually serve the community while also serving as a model of diversity and acceptance,” says Maj. Gen. (Res.) Doron Almog of the Israel Defense Forces and the chairman of ALEH Negev-Nahalat Eran." ["Plans for expanded village at ALEH in works, plus neuro-orthopedic hospital", JNS/Eli Klein, August 11, 2020]

And the following day:

"This is why we work so hard to protect and empower our ALEH residents with severe disabilities. This picture conveys so much more than a thousand words... but we'll highlight a few: Home. Love. Family". [Aleh on its Facebook page]

I need some help here. Can someone please explain to me how taking a child away from his home and family to live in a large institution connotes "Home, Love, Family"?

How does the practice of institutionalizing children serve "as a model of diversity and acceptance"?

Of course, I doubt anybody could ever convince me of that.

But one claim made above is accurate: Aleh truly does "break the mold" to paraphrase its PR team. "The mold" being life with a family. "The mold" being life within the community. "The mold" being services provided to people with disabilities in their home or in adoptive/foster homes. "The mold" being the path of the developed world. 

Yes, Aleh, does break that magnificent mold. And what a sad fact that is.

The State of Israel stands alone as it not only promotes, supports and finances these large institutions but pays visit after visit - physically - to those very buildings. Various government ministers have trekked over to Aleh branches, providing much publicized photo ops and laudatory quotes about the institutionalization of Israel's children and youth who have disabilities.

Meanwhile, we who love our children and want them with us are struggling. We are particularly challenged now, during the Covid era, when my daughter Haya's few pleasures have been curtailed.

Fortunately, though, this week we succeeded in returning her to that favorite activity - hydrotherapy. We found a small, local pool -  6 x 10 meters - which can be rented by the hour. 

After five months on dry land, I feared that she would have forgotten how to float on her back independently. That, of course, was her one and only skill.

We were thrilled to see that she remembered it well, relaxed as she used to, even stopped seizing - as you can see in the photo above.

I'm still awaiting word from the Ministry of Welfare which is concealing statistics re the impact of Covid-19 on residents of the closed institutions. It has yet to release details of where the ill and deceased residents were living despite my request for that information under the Freedom of Information Law 3 weeks ago!

They maintain that they are obligated to respond within one month.

Topsy-turvy state: Is the head of a closed institution an "inclusion icon"?

Image Source: Israel National New

Live and learn.

It seems a person who champions the separation of children with disabilities from their families and locks them up in large institutions is none other than an "inclusion icon" ["Corona Cocoon: Inclusion icon shares her quarantine practices"].

No, that was no typo. The Aleh PR team actually dubbed the chief administrator of its Jerusalem branch with that moniker. It's akin to labeling a totalitarian leader "Defender of Democracy" or a drug lord "anti addiction". etc. You get my drift.

Around that time, Bizchut, the Israel Center for the Rights of People With Disabilities, circulated a newsletter which detailed two instances of its intervention to help individuals with disabilities escape institutions. Here is one [my translation from Hebrew]: 

"Dan, 26, has cognitive disabilities, autism and challenging behavior. He shuttled between various residential settings but didn't manage to settle in at any of them. Life in a big, remote institution disconnected him from his family and his community. In sheltered living, he resided with five others and needed to accommodate himself to a strict daily routine. Consequently, he experienced fits of rage or was pumped with psychiatric drugs. Dan's parents returned him to the community. They designed an independent, flexible program suited to his needs and abilities. His medical and emotional conditions improved. His attacks of rage have disappeared. He has friends in the neighborhood. He attends synogogue. He enjoys classes in arts and crafts, sport and gardening. But the subsidies that Dan receives only cover half the cost of the program. His parents have been paying for the rest. How much is that, you ask? Well, interestingly, it's less than his living expenses were at the institution. We approached the Ministry of Welfare with a request to supply people like Dan with services supporting life in the community or, alternatively, to cover the costs of a personal program which is, as stated, lower than the cost of life in an institution. This is the correct way to provide a person with services: funding or a personal basket which he can choose to implement. We will continue to update!"

But the struggle confronting Bizchut is constantly obstructed by our own government, one that encourages, praises and supports institutionalization.  

As we have grown to expect, yet another couple of government officials trotted off to Aleh last week to praise the denial of equal rights to our most vulnerable citizens. Aleh's Facebook page and website informed us that 

"Michael Biton, Minister for Civil and Social Matters in the Ministry of Defense visited the "Rehabilitation Village of Aleh Negev/Nahalat Eran". The chairman of the village, Doron Almog and CEO Avi Wurtzman conducted the visit to the site during which the Minister heard about the endeavors at the village and the educational and rehabilitative activities that are carried out there. He was also impressed by the rehabilitation day center and spoke to a patient who progressed extraordinarily thanks to the dedicated therapy and care of the staff there. The minister visited the therapeutic pool. horse farm, amphitheatre and the site of the rehabilitation hospital which will serve the needs of thousands of Negev residents. Minister Biton praised the employees of ALEH Negev-Nahalat Eran and their dedicated service and listened intently as he was told about the village’s history, its development over the years, its future vision and present challenges. Before departing, the Minister signed the village guest book, writing that, “a visit to ALEH Negev-Nahalat Eran is an obligation for every Israeli. A special thank you for all that you do to benefit IDF veterans with disabilities and the residents of Yerucham and the Negev, so close to my heart.”

Source: Screen Cap

And just two days later another government official, Minister of Diaspora Affairs Omer Yankelevich, enjoyed a repeat performance by PR chief Doron Almog, and CEO Avi Wurtzman. The Minister heard about the major projects, ranging from the construction of that much-touted rehabilitation hospital to the volunteerism of "hundreds of diaspora youths" - you know, to make it all relevant to her domain. 

We learn from Aleh that afterwards the Minister 

"praised the endeavors of the Village... blessed the administration of the place and the staff in the guest book and wrote 'To the warmest, most special, moral and humane home in the world. Thanks to you we learn what a person's role is in the world...Thank you for nurturing values the merits of which take center stage in Israeli society and in the Diaspora...Thanks to you the next generation will be different..." [Source]

The Minister obviously has a soft spot for hyperbole.. And she is also obviously ignorant about the global view of institutions like Aleh. Here is what the COVID-19 Disability Rights Monitor ("the world’s only systematic international shadow monitoring report focusing on disability rights") had to say just one month ago:  

"While the institutionalization of persons with disabilities has always been a human rights abuse,[emphasis added] our survey demonstrates that the emergency measures that were implemented by governments to control the spread of COVID-19 have accelerated the pre-existing abuses of the rights of persons with disabilities in institutions. These abuses include violations of the right to life itself. For instance, persons living in smaller group homes in the USA are contracting and dying of COVID-19 at a much higher rate than the rest of the population. Institutional residents who have contracted COVID-19 were denied access to the same quality of health care that was provided to other citizens."  

I would advise her to peruse this post of mine ["The case for de-institutionalization in the COVID-19 era"] too.

In the meantime, I am still anxiously awaiting a response from the Israeli government's Ministry of Welfare's Freedom of Information section (mentioned here). I requested a break-down of the number of COVID-19 victims with disabilities according to the individual institutions.

Dealing with cluelessness

Screen capture from the published Aleh video clip

I never cease to be amazed by the utter cluelessness of our decision-makers about the needs of people with disabilities.

Yesterday, our State Comptroller, Matanya Engelman, visited the Aleh branch in Ofakim, Aleh Negev. He donned the standard "blinders" that Israel's leaders persist in wearing when assessing the lives of our most vulnerable.

Consequently, the risks and suffering entailed in housing large numbers of children and young adults with disabilities in large, closed facilities eluded him.

He is patently unaware of the global move to transfer that population to families within the community in the rest of the developed world [see "The case for de-institutionalization in the COVID-19 era"]

These were the parting words of praise that he wrote in the Aleh Negev guest book:

"Blessings from the bottom of my heart for your impressive, empowering work for the good of the population of people with disabilities in the Negev. With your blessed achievements you constitute a model for the rest of Israel's society. Be blessed and expand your activities. I consider it important to tend to the needs of the population with disabilities, especially in the perphery. We in the Comptroller's office focus on these aspects of society in order to be the ears and eyes for those populations deserving of advancement."

This uninformed attitude towards people who desperately need government intervention is disconcerting, to put it mildly. This is especially true now, in the midst of the Covid 19 pandemic.

In stark contrast, here is a Facebook post of People With Disability Australia dated August 1, 2020:

The spread of the COVID-19 in congregate living situations like aged care facilities, and now in a Melbourne group home, really emphasises the need for people with disability to be supported to live independently.
People who live in group homes often do not get to choose where they live, who they live with, how many people they live with, or who is assigned to support them.
Social distancing is much more difficult in congregate living situations with a lot of people coming and going, including staff, visitors and residents. This is a public health concern for everyone involved.
People with disability have been identified as particularly “vulnerable” to this potentially deadly illness. If only we all had the freedom to decide who, and how many people, we have contact with in our own homes.
We have made a submission to the Disability Royal Commission regarding the need to end group homes. You can find it here.

You can observe the conditions of Aleh Negev's residents in a video clip which the Aleh PR team considered worthy of circulation.

Remember this is a scene which was not concealed because of the crowding, dearth of staff, absence of social distancing or lack of stimulation. Rather, it was proudly posted on Aleh's Facebook page several days ago - online here. The relevant scenes are at 0:06, 0:07, 0:18

Meanwhile I have lodged an official request with Israel's Agency for Freedom of Information for the segmentation-by-institution of the COVID-19 data I received from the Ministry of Labor and Welfare recently and that I published in my July 29, 2020 post [here].

Hoping that I can share that with you soon.

An Aleh update

There has still been absolutely no public mention anywhere by anyone connected to Aleh of the resident who passed away of Covid-19 back in mid-April ["Following a Covid-19 death at Aleh, a troubling silence"].

Likewise there has been no news about the five Aleh residents who were hospitalized then with the virus.

The release from hospital of four other residents several weeks ago was, predictably, announced on the Aleh Facebook page with characteristic fanfare.

Will we ever learn what became of those forgotten five?

Following a Covid-19 death at Aleh, a troubling silence

Children in a video clip posted by Aleh [Source]

It is a tragedy - but not a surprising one.

The population of Aleh's several institutions, totaling at their count over 850 children and young adults, are inherently high-risk for contracting Covid-19. Aleh's administration itself describes them as having "complex disabilities" and as being "at high risk for succombing to the virus".

Here is what Forbes magazine wrote about this segment of society:

"The people most often cited as being at serious risk are largely, by some definition, people with disabilities. While simply having a disability probably doesn’t by itself put someone at higher risk from coronavirus, many disabled people do have specific disabilities or chronic conditions that make the illness more dangerous for them." [Source]

When these individuals are congregated in large, confined groups and with rotating caregivers, they are obviously placed at even higher risk for the virus. 

That risk then rises exponentially when youths are invited into those large, closed institutions to replace regular staff members - as Doron Almog boasts of having done [in this Hebrew-language Ynet interview], 

As we are all now aware (perhaps excluding Almog), those untrained teenage volunteers could be asymptomatically infected, highly contagious and therefore capable of spreading the virus to their vulnerable charges!

Despite reports of three separate outbreaks of Covid-19 within Aleh's walls (two in Aleh Negev and one in Aleh Gedera), there have been no updates about the conditions of the ill Aleh residents from Aleh itself. 

After boasting about the exemplary sanitization operations at Aleh and of his success in enlisting those scores of volunteers, untrained 17 year olds to care for our most vulnerable citizens, Almog has gone inexplicably mum.

He hasn't even conceded that his promise on March 25 to set up a hospital for Covid-19 patients in Israel's south within one week was utter nonsense [here - and archived here].

On April 14, we learned from a single news report that a 41 year old Aleh resident passed away of Covid-19. The news source (my  translation from the original Hebrew) added: 

"After all residents of the institutions were tested at the request of the Aleh chain it emerged that more than one fifth of the residents, 26 out of 117, are sick with Corona. Nine of those are still hospitalized in hospitals throughout the country, 12 have been transferred for treatment for mild Corona within the welfare framework and four recovered in the hospital and have returned to the instituion. Ten staff members were also infected with the virus." [Source: Ynet] 

Meanwhile for Aleh's PR team, it is business as usual. Its sites and Facebook page sport their routine, inane "feel good" photos and video clips intended to inspire in its supporters compassion, guilt and, naturally, a reach for the wallet. 

And these days, Covid-19 is utilized to heighten what Aleh calls its urgent need for donations: "When Kids Can’t Go On an Outing, Bring the Outing to Them (March 17, 2000)".

As recently as several hours ago, the Aleh Facebook page posted a clip [here] about the home garden of one its staff members! After that it was photos [here] of Mimouna "fun" at Aleh Jerusalem. 

The catastrophe of Covid-19 is teaching us myriad crucial lessons about how we have conducted our lives. But will those include one regarding the lives of people with disabilities? 

Will Israel finally acknowledge the fact that these citizens need a better, safer, more loving and more inclusive environment than is offered them in large, closed institutions like Aleh's?

Will our government finally resist the pressures exerted upon it to provide nearly all of Aleh's annual funding?

It is high time our leaders joined the rest of the developed world in shuttering up those institutions and re-directing that money to caring for those citizens in the settings they deserve: in their families' homes, in adoptive homes or in small in-community group homes.

Let's hope Covid-19 will be the wake-up call that our abandoned children with disabilities have so desperately awaited?

No news is NOT good news

For background, click here to review my previous post

While the public has heard no news about the conditions of ill residents at two branches (Aleh Gedera and Aleh Negev) of Aleh's four large closed institutions, we did learn of yet another Covid-19 outbreak there. 

This time it was the intensive care unit at Aleh Negev where a nurse tested postitive. The worrisome announcement was,predictably, given a postitive spin on Aleh's website with lines like these: 

"During the evacuation from the ward, the ALEH staff and volunteers took the youngest residents – babies and toddlers – to the playground to alleviate their anxiety and keep them calm. Testing is ongoing and will take longer than usual due to the fact that so many of the ward’s residents are very young and require consistent intensive care. Following the testing, the residents and staff members will be quarantined in the newly sterilized ward until the results are analyzed and any additional infected individuals are identified." [Source: Aleh]

Needless to say, that should be alarming. 

Those children need not have been enclosed in such a dangerous setting; a large, isolated institution. Residents are in close contact with each other and with the many staff members, rendering it a petri dish for the Covid-19 virus. 

With government funding, many if not most of these children would have been living where they belonged: With their own or an adoptive family!

In addition, there has been no news about the brand-new hospital that Aleh's spokesman, Doron Almog, promised us. Two weeks ago he stated unequivocally (as I posted here) that Aleh committed to constructing one in the Negev within one week. To date, nothing of the sort has materialized. 

No big shock. Vacuous, hyperbolic statements are an Aleh trademark.

Bizchut, the leading advocacy organization for people with disabilities in Israel, has embarked on a campaign to win visitation rights for parents of children locked up in institutions like Aleh. During the scourge of Covid 19, most have been barred from seeing and comforting their anxious children.

In its recent circular, Bizchut wrote:

"Institutions and hostels have announced they are no longer allowing visitors. No-one can enter and no-one can leave. This, despite the fact that for many persons with disabilities, interaction with relatives is essential to their mental and sometimes physical well-being. We also know that in some of these facilities instances of neglect and abuse have been exposed. With the reduction in external staff going in and out, relatives are the only people who can observe and report on what is going on behind the walls of these isolated facilities" [Soure]

Learn more about what has been occuring in large, closed institutions for people with disabnilities since the Covid 19 outbreak [see Institutions and some viral lessons not yet learned]

Institutions and some viral lessons not yet learned

Aleh's Gedera facility [Image Source: Google Maps]

If all else fails, perhaps the Covid-19 pandemic will convince this state that children with disabilities - even "complex" ones - belong at home with their families.

Perhaps, at long last, the resources our government pours into large closed institutions like Aleh will be rechanneled to families who would love to keep their children at home but simply do not have the means to do so.

Even Doron Almog, Aleh's champion cheerleader, conceded last week that senior citizens facilities and institutions for the disabled are incubators (מדגרות) for the Covid-19 virus. Yes, he actually referred to enterprises like Aleh as "institutions" [in this Hebrew-language Ynet interview], forgetting the euphemisms that he and Aleh's PR team usually favor, like "village", "facility" and "home".

With scores of residents and employees at two of Aleh's four branches - Aleh Negev and Aleh Gedera - already infected and in lockdown, it is clear that our most vulnerable citizens ought to have been returned to their families long ago. They would have been exposed to fewer people and thus would be less endangered. 

Most of them have pre-existing conditions that render them more likely to fall seriously ill from this virus. Remember: Israel is alone among developed countries of the world in its dogged promotion of institutionalization of children and adults with disabilities. 

Instead of isolation, Aleh residents are now being exposed to volunteer youths whom cheerleader Almog says he has enlisted to substitute for absent staff members. 

Some of the latter are ill with the virus, others simply "fled" the facilities, according to Almog [Ynet Hebrew]. In the Gedera branch, out of 100 staff members, only 18 remain, he says. He dubs this the "Italy Phenomenon". He then recklessly asserted that "as we all know, youths have better immune systems" so "17-18 year olds can after a brief prep course be brought in and in fact 30 such youths from a pre-army course have arrived there." [Archived]

As the rest of us are all aware that is patently false. Youths can be contagious while asymptomatic. Those volunteers could unwittingly be endangering their fragile charges.

There have been no updates from Aleh for several days now regarding the condition of its ill residents. No update either about Mr. Almog's grand promise to build a hospital for corona virus patients in the South of Israel. On March 25, 2019, he boasted on Facebook [here - archived here] that Aleh will accomplish "with the Ministry of Welfare and with the assistance of the Ministry of Health within one week". That deadline came and went yesterday without a new hospital.

In the meantime, Aleh is clearly short-staffed. It has posted a Help Wanted ad [in Hebrew here - archived here] for caregivers on its Facebook page. 

A still image from a video clip that Aleh posted here

I shudder to imagine how the resident children and young adults enclosed in its four institutions are coping. If this Aleh video clip [here - screen shot on the right] is any indication of the care they are receiving, it is clearly very rudimentary! 

(In normal times, such scenes would probably not be publicized by Aleh's PR team.)

True to form, even in this apocalyptic time, the Aleh PR people persevere with touting this business as a godsend to the world of disabilities. 

We can only hope, however, that when the Covid-19 nightmare is behind us, their distorted view of people with disabilities will be corrected. Perhaps, then, it will finally dawn on Israel's powers-that-be that children, all children, even children afflicted with disabilities, belong in their own or in adoptive loving homes within the community. 

Not isolated from others in closed, large institutions like Aleh.

Aleh and Covid-19

I'm receiving streams of clips and messages from well-intentioned folks determined to mine the Covid-19 disaster for uplifting, inspirational lessons. They've transformed its apocalypticism into a celebration.

Then there are those who claim to have pinpointed the specific sin that's the real culprit; the one for which we're all being punished by this pandemic. The one wrong-doing that, if rectified, will miraculously eradicate this whole mess.

And let's not forget the dominant camp, the preachers of "this-is-a-more-meaningful-lifestyle". The ones who insist we needed quarantining to teach us what's truly valuable in this world.

Well, I'm sorry. This simply isn't a blessing in disguise. And those takes on Covid-19 incense me. Too many people are already or will soon suffer in myriad ways from this disaster to paint it as rosy. And too many of us have already suffered enough in pre-Covid times to know full well what matters in life. 

We didn't need a pandemic to teach us that. 

Now onto institutionalization of people with disabilities. If anybody still needed convincing of its evils, Covid-19 has obliged us with another argument against that route.

It has become abundantly clear that residents of large closed facilities are locked into a veritable virus incubator. Children and adults - like our Haya - are always vulnerable to illness and complications but now they are at the mercy of a new threat. They are also undoubtedly at high risk for complications from the virus.

At first, predictably, the unscrupulous Aleh PR team saw fit to use the pandemic to self promote with this post: When Kids Can’t Go On an Outing, Bring the Outing to Them (March 17, 2000). 

Oddly, they themselves conceded that 

"Residents of ALEH Moriah are among the most susceptible population and require careful protection against any possible exposure to the corona virus."

And sure enough, soon afterwards that very branch of Aleh - there are four scattered throughout Israel - was infected. After one of its employees contracted the illness last Friday (March 21), 21 residents and 20 staff members were quarantinded and tested. 

On Sunday March 22, it was disclosed that six residents tested positive. Currently, the 41 residents and employees are quarantined in one of the branch's buildings. The other residents are deemed safe. And remain untested!

Yesterday we learned ["הקורונה הכתה שוב במעון עלה", Gedera Hayom] that in Aleh's branch known as Aleh Negev Nahalat Eran, another employee contracted Covid-19. Consequently 42 residents and tens of staff members have been quarantined. It is not known how many residents of that branch, if any, have the virus.

It is crystal-clear that had our government chosen to hand the funds it channels to Aleh instead to the families of this population, many, if not most, of them would be much safer today. They would be hunkered down at home like everyone else. They would be spared contagion from young asymptomatic staff and volunteers.

Harsh as this will sound, if we, G-d forbid, run short of respirators for those critically ill with the virus and triage is unavoidable, who will be granted that luxury? A person with zero chance for a healthy, normal life afterwards? A person with "multiple, complex disabilities", as Aleh boasts of its residents?

One U.S. parent of a child with severe disabilities blogged that a friend told her:

"...the Powers That Be in Washington have determined that a person with cognitive disabilities will not get a respirator should he or she or they need one. I said, We know that already. We is us. We know about the rationing of care."

Lest you surmise that the Aleh's operators have been chastened by this situation, here's this to rectify that misconception. Once again, they've enlisted their PR hacks to put the catastrophe to good financial use!!

"Though our ALEH residents are being distanced from the public to safeguard their health, it is essential that they never feel alone. Donate Now" ["BREAKING: Coronavirus Threatens Disability Community in the Negev", Aleh website, March 25, 2020; archived here]

Of course, they are always distanced from the public. But not to "safeguard their health".

Can we stop idealizing institutions for people with disabilities?

Deep in the desert: Aleh Negev

(A version of this article under the title "Let's stop idealizing institutions for people with disabilities" was first published by Times of Israel [here] on March 6, 2020. Some broken links in that published piece are fixed below.)

It was with deep dismay that I read the op-ed “An Oasis of Caring in the Desert” [New York Jewish Week, February 12, 2010], in which Michal Divon describes her week of volunteering at Aleh Negev, a large, closed and isolated institution housing 220 children and adults with disabilities. It is part of a larger chain of Israeli Aleh institutions.

February marked Jewish Disabilities Awareness, Acceptance and Inclusion Month (JDAAIM) so the world of disability is indeed a timely topic.

But does Divon’s piece advance the cause of inclusion and integration of people with disabilities in our communities? Not likely. Rather it produces the same smoke that Aleh, the largest such chain in Israel, routinely blows in the public’s eyes.

Aleh’s PR team is a slick operation that turns hypocrisy into the sort of hype that resonates with a large contingent of Jewish society. It posits that Aleh’s enterprise is “the ideal” solution. Or the embodiment of “inclusion” in the community. Or just like “a real family”. (Those quotes can be found here, here and here in Aleh’s marketing materials.)

Aleh-style institutions have been shut down throughout the developed world – and in some under-developed countries as well. Yet Israel has gone the other way. Here, such enterprises remain full, well-funded and thriving.

In those countries, the residents of such institutions have been moved – in most cases years or even decades ago – to more humane living alternatives. These include their own families, foster homes or small-scale hostels within the community.

It would behoove a publication like the Jewish Week to delve into the issue and examine it more comprehensively. Perhaps a meeting with Bizchut activists would have dampened Divon’s enthusiasm for Aleh. Bizchut is Israel’s leading advocacy organization for the rights of people with disabilities. It has adopted as one of its three goals “the passage of legislation based on every person with disabilities having the right to live in the community with the assistance that he needs”.

Here is the first of Bizchut’s five core values as listed on its website:

“Independent Living – Promoting the right to live in the community and receive personalized services. Bizchut pursues this goal by exposing the violation of rights inside institutions and calling for a transition from institutionalization to independent living. Bizchut is also promoting legislation that will establish the right of every person with a disability to live independently in the community.”

On the other hand, Aleh’s core values clash head on with mainstream views of care for citizens with disabilities.

A report from the Israeli parliament's Center for Research and Information [Hebrew] presented to the Knesset's Committee for the Rights of Children in May 2019 found that in 2017 (the most recent Israeli data available), 2,740 children with disabilities lived in some kind of out-of-home arrangement. They included hostels, apartments, foster families and assisted living. About half of those children, 1,305, were stuck in institutions, a.k.a. “dormitories”. Only 646 were in foster care.

Following the sudden death in July 2019 of a 29 year old resident, Effie Ben Baruch, at a Haifa institution for people with disabilities, Naama Lerner, Bizchut’s Director of Community Outreach, circulated the following article. (The Hebrew source appeared August 21, 2019, written by Galit Edut is here - the translation from Hebrew is mine.)

Scandinavian states were the first to close such residences for people with cognitive developmental disabilities, in the 1970’s. Both New Zealand and Canada have since done the same. In the US, two thirds have already been shuttered and even in Bulgaria, a less western country, legislation has been passed mandating the closure of all such institutions by 2024 and the transfer of residents to in-community living with personal assistance.
In Israel, the Bizchut organization has been leading the demand for the closure of institutions, which has been ignored for many years. Only in 2011 did the Ministry of Welfare invite five international experts to draft a literature review of the transfer from dormitory residences to in-community living.
“Research findings demonstrate a clear picture: community services are more beneficial than institutional living for the totality of people with cognitive developmental disabilities”, they stated.
The request for a literature review arrived four years after Israel signed the UN Treaty for the Rights of People with Disabilities wherein paragraph 19 determines that “The State must ensure that people with disabilities will be able to choose where and with whom they live as any person is free to choose and that they will not be forced to live in a specific living arrangement.” [Translated by me from the Hebrew source]

Unfortunately, many Aleh supporters, donors and well-intentioned volunteers like Divon are unaware of the above information. They have internalized Aleh’s disingenuous PR and are convinced that, as Divon’s op-ed claimed, isolating people with disabilities in large, closed institutions “reinforces them as equals” and embodies their “inclusion” in mainstream society.

Sadly, that op-ed helps further entrench institutionalization. Instead, we need greater awareness of the fact that Israel’s generous subsidies for such places mean minimal funding for the truly inclusive alternatives.

As Aleh’s own marketing material reveals, the lion’s share of its operating budget, 85%, comes from government sources. In other words, Israeli taxpayers. Like me.

Do Divon and donors realize their support is a drop in the bucket relative to Aleh’s government resources?

As the mother of a 24 year old daughter, Haya, who is profoundly disabled, I am personally affected by Aleh’s operations. My child is left with precious little by way of government assistance in order for her to live at home with her family. When she aged out of the educational system at 21, several teachers at her school for the blind and multiply handicapped were surprised to learn that my husband and I wanted her living with us. They presumed we would institutionalize her, perhaps at one of Aleh’s facilities.

Because that’s what’s available. There are really few viable options and certainly none that would provide her with the benefits that living with a loving family does.

Aleh Negev is indeed “in the desert” as Divon says. But it is more ogre than oasis.