Showing posts with label Aleh. Show all posts
Showing posts with label Aleh. Show all posts

Sunday, February 26, 2023

February was Jewish Disability, Awareness and Inclusion Month

Source: ADI on Facebook
I know, I know. With disabilities in Israel at the forefront of my mind, I shouldn't be noting that February 2023 is Jewish Disability Awareness, Acceptance & Inclusion Month - on its very last day. 

But, at this point, there's no alternative.

If anyone needs a push to fight for equal rights and true inclusion of those with disabilities, ADI , as usual, provided it. Here is a post on its Facebook page dated February 21, 2023:
OPENING HEARTS & MINDS IN THE O.C.! The celebration of #JDAIM (Jewish Disability Awareness, Acceptance and Inclusion Month) continues throughout February, and ADI's North American Director of Development Elie Klein kicked off the third week of his coast-to-coast tour of Jewish National Fund - USA communities with an incredible home hosted reception in Orange County, California. The venue was exquisite, the food was delicious and the company was exceptional, but ADI Negev-Nahalat Eran still stole the show, capturing hearts and imaginations while highlighting the beauty of true disability inclusion. All in attendance were blown away by the sheer size of the rehabilitation village and the scope of its vision, and they expressed a desire to learn more and support its continued growth and development. City after wonderful city, #JDAIM education is opening the door to year-round empowerment! 
ADI assiduously promulgates the notion that its frameworks constitute inclusion for people with disabilities. That alone elicits a flood of support and cash. 

Of course, as its accounts have shown in the past, the herculean portion of its funding still comes from the government of Israel, i.e. taxpayers'  money. 

But the generosity of Americans, like those in photograph featured prominently on their Facebook entry, should not be underestimated. 

Presumably, nobody in this audience asked Elie Klein how the institutionalization of over 220 babies, children and adults in two large, locked buildings could, by any stretch of the imagination, qualify as "inclusion". 

Regardless of the "sheer size" of the "village", or, rather because of its "sheer size", its continued existence in contemporary Israel is outrageous. For a reminder, "How Israel treats its disabled has been concealed for too long". 

Please remember that in case you too are approached by ADI's well-oiled solicitation machine during the upcoming holiday season.

Thursday, October 6, 2022

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.

Monday, June 27, 2022

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'utalso known as Movement for Independenceresponded 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.

Monday, May 30, 2022

New rule: It's alright to restrain if the victim is disabled

Doron Almog may have won the 2016 Israel Prize and amassed a horde of friends in high places. But I have photos of the bedrooms in the Jerusalem branch of ADI, a large, closed institution for children and young adults with disabilities in which he plays a lead role. They are damning.

A notice was circulated last week by the Director General of Israel's Ministry of Welfare. It's entitled (my translation from the source Hebrew) "Tools and procedures for identification, prevention and response/remedy for challenging, dangerous behavioral situations in facilities of the Disabilities Administration

Dated May 23, 2022 and downloadable (in Hebrew) from here, the circular formally declares the use of the "crib-beds" in which Almog's people have been been enclosing ADI's institutionalized residents to be banned.

I made an unannounced visit to ADI Jerusalem (then known as Aleh Jerusalem) in 2018. See "Making history: After the raid". During that visit, we were shown beds, one of them occupied, that are best described as "cages". The person in the bed below was photographed at 12:30 pm, the middle of the day. 


2018: Bed-cages in use at the ADI Jerusalem institutional residence

This is not to say that the Ministry of Welfare's other regulations were welcomed by defenders of the human rights of people with disabilities. In fact those with whom I was in touch were infuriated. Disturbingly wide discretion is granted to staff members in institutions to restrain the movement of residents. The regulations say they may do so "only in unusual instances, and only to prevent actual, immediate danger to a person or to another and only to the extent that is required for that purpose."

Included specifically in that carte blanche is the use of hand splints for 45 minutes; fastening to chairs during meals; and locking up and isolating residents in a "protection room" for up to an hour at a time. 

These measures may be used on anyone with disabilities aged 6 years or more, who engages in "challenging, dangerous behavior" (again my translation of the Hebrew).

The new regulations will go into effect in six months from now. Among other reasons, this is to enable institutions to prepare for their implementation.

Here's what Adv. Naama Lerner of the Movement for Independence (a group I mentioned in this earlier post a week ago) wrote in reaction to the new regulations (again my translation from the source Hebrew):
"I urge you to read this circular with great interest. It permits harsh restrictions on people in institutions with "challenging behavior". It permits fastening to a chair, isolation, tying up, in very pretty words and with 'professionalism'. For now, this is for your information. In the future we intend to act forcefully against these regulations."
Too bad all those well intentioned donors to ADI institutions have never seen these bed-cages.

Tuesday, April 19, 2022

Politicians, justice and missing the point

Shai visits Aleh Jerusalem 2018
I was first introduced to Knesset member Dr Nachman Shai when Bizchut (“Promoting the rights of people who have disabilities in Israel”) paired me up with him to pay a joint surprise visit to a large, closed Jerusalem institution for children and adults with disabilities.

Across the country on that same day, other such facilities were similarly inspected. The reason for having activists accompanied by Knesset members was that the latter can legally insist on admittance to those institutions. Civilians, like me, are almost always denied entry.

I certainly was, anytime I previously tried.

After the tours, each Knesset member's impressions were recorded on video. Shai astounded me with his praise for the institution. He was well aware that Bizchut and other activists, some with disabilities themselves, were intent on replacing institutionalization with in-community living for everyone.

Nevertheless he emerged with this reaction: 

"I believe I am leaving with a good impression, a positive impression... We toured from top to bottom, the institution was open... We were not prevented from viewing anything, everything we requested we received and I leave as much as possible with a good feeling." (My translation of his Hebrew as recorded at the time.)

Shai had entirely missed the point.

People with disabilities are often locked up in “gilded prisons.  Their human rights are denied, the love of family and home stolen from them. Funding which our government could and should channel to parents and children with disabilities is lavished on institution operators.

The rest of the Western world has, as a universally agreed matter of strategy, abandoned the institutionalization of people with disabilities over the past two decades. But Israel persists in supporting, funding and promoting it for its population with disabilities.

Standing outside that institution on the day of that visit, Shai briefly related to that "debate", as he called it, and said he intended to leave it at that.

On April 20, 2022, a demonstration will be held at Tel Aviv's Kikar Habima at 16:00. In the Passover spirit, it is being called "Our Exodus to Freedom - From Institutions into the Community".  

Nachman Shai just didn't get it.

Last week, he missed another crucial point again. And just as egregiously. 

Here is how he is quoted by Michael Freund in an opinion piece [source: The Jerusalem Post]:

In an interview on Army Radio on March 30, he asserted that “hungry people turn to terrorism. Without food and water, they will disrupt our lives... this contention simply does not stand up under further scrutiny. To begin with, consider the fact that according to the World Bank, there are approximately 700 million people on the planet living in what is described as “extreme poverty,” which is defined as earning less than $1.90 a day. That is nearly 10% of the world’s population...

If the simple equation that suggests that poverty directly gives rise to terrorism were true, one would expect to find millions of people, if not more, taking up arms worldwide and launching terrorist attacks. But that is clearly not the case.

Simply put, most hungry people are not violent nor are they terrorists. They might be desperate, embittered or dissatisfied, but that is a far cry from joining the ranks of terrorists...

Numerous academic studies over the years clearly demonstrate this to be the case. As MIT Prof. Alberto Abadie concluded in a groundbreaking 2006 study titled “Poverty, Political Freedom and the Roots of Terrorism,” published in American Economic Review, there is “no significant association between terrorism and economic variables, such as income, once the effect of other country characteristics is taken into account.”

The same holds true vis-à-vis Palestinian terrorism. Studies have repeatedly found that those who engage in it are generally better off economically than most Palestinians…
The resulting evidence on the individual level suggests that both higher standards of living and higher levels of education are positively associated” with the likelihood of a Palestinian joining Hamas or Islamic Jihad, Hebrew University's Professor Berrebi wrote in 2003...

Indeed, Berrebi discovered that Palestinian suicide bombers “tend to be of higher economic status and higher educational attainment than their counterparts in the population.

My child's murderer, Ahlam Tamimi, reinforces the above findings. Neither poor nor uneducated, she was a middle-class student of journalism working as a TV news anchor who thirsted for Jewish blood. Released in the tragically lopsided Shalit Deal in 2011 along with several hundred other convicted murderers, she maintains her previous comfortable standard of living today in her city of refuge, Amman.

She continues to boast of her "successful operation" in which fifteen Jews perished and urges others to emulate her.  

It may be ignorance that lies behind Dr Shai’s recent responses - or rather, non-responses - to me. As we parted after that visit to the Jerusalem institution, he handed me his card inviting me to contact him if I ever needed his help.

My husband and I have been eager to take him up on that offer. Our quest for justice for our daughter is blocked by many, including Israeli politicians. The U.S. Department of Justice indicted Tamimi in 2017 and has asked Jordan to extradite her to Washington where she faces terrorism charges. But King Abdullah's regime has rejected those requests and she remains free, sheltered by the Hashemite kingdom.

The State Department has throughout all our years of effort been uncooperative. So have U.S. politicians on both sides of the aisle. We have learned that the Israeli government has signaled American Jewish leaders know they would prefer our requests for their support to be ignored

We approached Dr Shai in the naïve hope that he would speak up in support of our quest for justice. But he has never responded to my emails and his spokesperson has repeatedly advised me to direct my pleas elsewhere.

Here’s how she framed the brush-off:

While I understand that this response is not satisfactory for you, I will keep you posted if something more concrete develops. I am deeply sorry that I cannot help you further at this moment in time… I will continue to explore how we can be of support - particularly through other diplomatic means."

It’s been months and the exploring is presumably still underway.

Perhaps I should not have been surprised. Public figures who don’t respond when the massive problems of institutionalization of the disabled are under discussion are probably not that tuned in to justice either.

Tuesday, March 22, 2022

On Covid and institutions

My RAT result
I wrote (but didn't post) the following two weeks ago:
As my kids say, "bummer". I had a positive result on my at-home Covid rapid antigen test last night. I administered it because of fever and a cold. Now, I am a scrupulous mask wearer, a Covid recoverer, had two vaccines, scored 2,000 + on a serological antibodies test four months ago and have, to my family's chagrin, grown extremely anti-social during the last two years.  
So, we're stumped as to where and how I caught this.
On the off chance that this is a false positive, I will go do a PCR test this evening.
I am particularly disappointed because the pool to which we bring Haya for hydro has been broken all week. It only recovered and reached the desired 32 degrees Celsius (about 90 Fahrenheit) this morning. I did a lot of Whatsapping to land a cancellation of one hour by one of the teachers for this morning. 
So Haya will miss her hydro this week. As I have often noted: It's the highlight of her life...
Haya, in a recent drawing of mine
Since then, Haya has thankfully had two magnificent sessions of hydro. The second one was this past Sunday which we did in 30 degree (Celsius) water, instead of the usual 32 degrees. With her wetsuit on, Haya appeared as comfortable as usual. But I really missed those extra two degrees.

All the Whatsapp groups I'm in for people with disabilities and their families have been abuzz with talk of forming inspection groups. Clearly, the recent uptick in accounts of abuse in institutions here in Israel triggered that.

The idea is for those groups of volunteers to visit unannounced Israel's institutions for people with disabilities. I just volunteered for the Jerusalem area. Hopefully we will visit ADI Jerusalem and uncover whatever there is to uncover.

This time we won't be accompanied by politicians as we were the last time such visits were made ["Notes from an Aleh visit"]. 

My "partner" back then in 2018 was Knesset member and now Israel's Minister of Diaspora Affairs, Dr Nachman Shai, who in my opinion was utterly deceived by our guide's slick spiel. Sadly, Shai's reactions were confined to unadulterated praise.

Friday, February 4, 2022

Again: An institution, a scandal, a petition

Entrance to the Bnai Zion institution [Image Source
The cases of abuse in institutions for people with disabilities have been piling up in recent days. Yet another petition has been drafted (in Hebrew - it addresses the Government of Israel) and all are invited to sign on here: חתימה על מכתב לרה"מ להקמת ועדת חקירה ממלכתית על המצב במוסדות

Incredibly none of these shocking revelations has moved our government. It is hell-bent on pursuing the path of institutionalization as its first choice of care for its population with disabilities. This was evident in its recent closed-door cabinet session which resulted in yet another extravagant cash gift  [Actually, zero steps forward, January 3, 2022] to the ADI Negev institution. 

The latest abuse scandal took place in the Rosh Ha'ayin institution, B'nei Zion. The police request  to extend the remand of its suspected perpetrators claimed that the latter "physically attacked and abused the wards with disabilities together and separately and even caused injuries." 

The following was the reaction of the police representative regarding the actions of the primary suspect: 

"He allegedly committed shocking acts against the helpless. They were sexual acts, bringing lighters up close to the charges and lighting them, urinating on the charges' beds and strangulation. I have been a policeman for many years and have never before seen such acts. We watched videos and were shocked."

The administration of the institution is also under investigation since it claims to have been unaware of the hundreds of incidents of violence towards the charges although they were recorded by security cameras.

One of the many parents who visited their children after the report said: 

"This is a black day for us. My son is non-verbal and I am unable to ask him if he was beaten."

Gila Bar, whose daughter lives in B'nei Zion, added:

"Everything must be replaced here other than the social workers. Everyone else must go."

Even if you're as pessimistic as I am (and make that very), please do as I did and sign the petition linked above. It certainly can't hurt.

Friday, January 28, 2022

Institutions and abuse - but the funding goes on

Image Source: United Nations
We have learned of yet another instance of abuse against a person with disabilities living in an institution. Once again, it has received no media coverage and laconic police attention. 

The victim's mother reported to the police that upon visiting her son the day after the alleged attack, he had a broken elbow, blue marks, and hemorrhaging on his face and in his eye. The employee "simply beat him up with blows".  

It is truly incomprehensible that Israel remains stuck in its backward attitudes toward institutionalization. Doling out mass cash gifts, for instance, to institutions as it just did several weeks ago. And it did so despite the outcry of Bizchut, the Israeli organization dedicated to defending the human rights of people with disabilities.

In its end-of-year report, Bizchut summarized [see my unofficial translation into English that follows] that now infamous cabinet meeting which authorized the handover of millions of shekels to ADI Negev, the large, closed and isolated institution founded and headed by Major General (Res.) Doron Almog - the darling of Israel's elite and powerful. 

No to Funding for Institutions!

Our first initiative relates to Adi Negev, an institution in the Negev where 150 people with disabilities reside.

A month ago we learned that in a closed  meeting the government will decide whether  or not to allot millions of shekels to its development. 

We do not have and never have had anything specific against Adi Negev, only against the very idea of institutions. 

When people with disabilities live, work and receive services in one place which is designated for them alone - they are isolated/cut off  from the community outside, which deepens their separation from the society. This harms equality. This harms their quality of life. In such a place, they have no control over the most basic decisions in life. 

The State of Israel understood this as well when in 2012 it ratified the international Convention for the Rights of Persons with Disabilities which, according to its official interpretation by the United Nations, orders the closure of all institutions.

We Received Word of the Government Meeting only 24 Hours Beforehand and We Understood We Had to Act Immediately

In no time (from one day to the next) we embarked on a campaign which called on ministers to oppose reaching a decision without first holding a communal, transparent, open debate, with the participation of people with disabilities in line with the principle of "Nothing about us without us", which views people with disabilities as an inseparable part of the decision making process. 

We said that it cannot be that the State will allocate millions of shekels to a policy that affects people with disabilities - without hearing them and their representative organizations. We also said that in light of the Convention and in light of the demand that arises on the ground - from people with disabilities and from their families - it is impossible to allocate millions of shekels to institutions. The budget must be allocated toward the development of responses within the community.

700 emails calling for in community living were sent

True, the government ultimately decided to approve the budget increase of several millions of shekels to expand ADI Negev. But we are not discouraged. We will continue to fight with all our strength to advance the right of every person to live within the community. 

One of our goals this year is to anchor in legislation the right to autonomous life in the community with personal aid. 

We will be sharing further details soon.

I'm glad that Bizchut is not discouraged. 

But as I wrote in an earlier post [Actually, zero steps forward, January 3, 2022], the failure of our protests to prevent that cash gift of millions of shekels to ADI Negev, truly demoralized me.  

Sunday, December 12, 2021

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

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. 


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.

Wednesday, July 14, 2021

Disability pride

The late Effie Ben Baruch 
I am sorry to concede that I learned about July being Disability Pride Month from none other than ADI's Facebook page. 

Actually - and ADI omitted this point - it is recognized as such only in New York City where Mayor Bill de Blasio declared it in honor of the 25th anniversary of the Americans With Disabilities Act (ADA). Parades are held in a number of American cities including Los Angeles, New York City, San Francisco and San Antonio. 

New York City is hosting a parade to commemorate the landmark legislation and as a born-and-bred New Yorker I'll jump on that bandwagon. 

While ADI did disseminate this helpful information, it is also hard at work entrenching the institutionalization of babies, children and adults with disabilities in large, locked structures far from the rest of society. 

So, you do the math. I'd say this mention of July doesn't clear them even one iota. In fact, this month is being touted thus: 
"....not only a time for the disabled community to celebrate who they are, but it's also a time to better understand how you can become a better ally to our disabled community members." 
And I will attempt to do just that.

Several days ago, advocates for disability rights in Israel learned that a former caregiver, Ali Akaria, who worked in Ramat Haifa, an institution for people with disabilities was sentenced to nine months of community service after he was convicted of attacking Ephraim Ben Baruch. 

The latter, a helpless 27 year old resident in Ramat Haifa with cognitive and behavioral impairments, endured repeated abuse there by other caregivers which, it is suspected, caused his eventual death in 2019. 

 In his judgement against Akaria, Judge Zair Falach wrote that the defendant asked for the court's mercy and he responded: 
"If the defendant had behaved with mercy toward his charge he would not find himself being judged before me. The defendant's request for mercy is an infuriating request when the defendant himself behaved with an absence of mercy toward the deceased charge."
A propos "infuriating", the fact that the judge's ire translated into several months of community service has had that same effect on the disability activist community. That slap on the wrist has galvanized them to redouble their fight for an end to institutionalization. Protest rallies, petitions, PR campaigns and lawsuits are all being weighed as the next step toward that goal. 

Parents and siblings constantly share their desperation to transfer their loved ones to in-community living in small hostels. 

Pull out your magnifying glass to see what has us very excited:
My daughter Haya is kicking a bit!

In Israel this isn't an option for most. As one of them noted: 
"...within the system of checks and balances that exists when residents go out to activities and live in the community among neighbors, leave their homes, a case of ongoing abuse would be exposed. The institution of Ramat Haifa - like Neve ha-Irus which we recently experienced - is an isolated island where anything can happen. Going out into the community ensures the safety of residents while the Ministry argues that an institution is the most protected place."
Somebody in that Whatsapp group posted an invitation to an ADI-sponsored Zoom event for parents of children with disabilities. Shocked and dismayed to see them ensnared in another ADI trap, I reminded them what the ADI enterprise is really about. You can help spread the word too! This is the month for you to help spread the message.

Friday, June 25, 2021

Praise for institutionalization from a senior hospital official?

ADI Negev [Image Source]
I always open the Facebook page of ADI (previously known as Aleh) with the dread that I will see photos of yet another prominent influencer visiting its very well-appointed facilities. Those images would naturally be accompanied by some adulatory speech delivered to the place's founder and CEO, Doron Almog.

And so it was today. Right down to the predictable hyperboles: 
ADI staff members and volunteers... are fully dedicated to every child and young adult and possess the wonderful gift of being able to see the hope and the ability within every disability. We are so grateful to ADI for their incredible work and wonderful partnership! [Archive link]
The culprit this time was Prof. Ofer Merin, director general of Shaare Zedek Medical Center Jerusalem.  His 'offense' against people with disabilities was committed earlier this week.

It is always infuriating when medical professionals in particular laud ADI for violating the rights of people with disabilities by isolating them from the community, locking them up in a large, closed institution. 

Here's what I want to say to them every time I see such a thing:
I mean, really, what did you learn in medical school??? Are you that clueless about experts' views of institutionalization and the damage it wreaks?
Advocates for the human rights of people with disabilities fervently hope that once our new government unveils its position regarding institutionalization and pursues it, Professor Merin will prove to be but an anomaly. 

The new Minister of Welfare, Yesh Atid's Meir Cohen, an educator, a former two-term mayor of the southern city of Dimona and previously a Minister of Welfare between 2013-2014 has yet to address activists' demands for the transfer of those locked in institutions to in-community living in small group homes or with their families. 

Haya at home this week
He will face a challenging job finally propelling Israel's citizens with disabilities into the 21st century..

And while he's at it, he might see to re-educating all of Israel's "Professor Merins"!

Back here at hone, we are persevering with the Ketogenic Diet and still praying that the decrease in seizures will deliver an improvement in Haya's functioning. So far, no sign of that. 

The dietician promised to raise the carbohydrate component of our recipes to attempt to energize Haya. But she (the dietician) is away sick this week so the new recipes haven't arrived yet. 

I have bought another toy to practice pressing on buttons and eliciting sounds and music. At this stage, we need to press Haya's fingers for her. My dream is that she'll learn to do it herself - really quite modest as dreams go, don't you agree?

So, maybe one day?

I haven't resumed her speech therapy sessions yet though our health fund (kupat holim in Hebrew) did agree to subsidize 12 of them. 

At this stage, I am simply not confident Haya will be responsive enough to make it worthwhile.

Friday, June 18, 2021

A room of one's own

Good night: My daughter asleep in her own bed,
in her own bedroom, in her own family's home
A High Court of Justice decision handed down in Israel on December 5, 2019 has been circulated this week among disability activists. I saw it and here are some brief details.

The plaintiff was Ronit Shmueli and the respondent was the Branch for the Care of People with Cognitive Disabilities in Israel's Ministry of Labor, Welfare and Social Services, .

In my words based on the Hebrew-language source, the court ruled that:
If a resident has requested a private room. the director of the institutional/framework will make an effort to assign a room to that person according to his/her request, taking into account the general circumstances and personal and professional considerations pertaining to that person and to the others who reside with him in the framework. 
In cases where a room in the institution where that person resides and that accords with the wishes of the applicant cannot be found, he/she will be placed on a waiting list... 
The Ministry will examine the subject of waiting for single occupancy rooms as part of its ongoing, comprehensive supervision of frameworks.
Having myself visited ADI's Jerusalem branch, let me assure you that residents there do not sleep in private rooms. But then I would have been surprised if they did. Remember: the head of the organization that operates those institutions fervently believes that life in a large, locked and isolated institution is, to quote him in a recent hagiographic article in the Jewish Journal of Los Angeles
"a home and a family providing a continuum of loving care from infancy and childhood through adulthood. Some of our residents are in their 60s.”
Puzzlingly, that piece also relates that, in a speech he gave at ADI's southern branch, Nahalat Eran, Doron Almog recalled: 
A man said to me recently, ‘We remember how you used to come here [he means a specific country club swimming pool] with your son, and some people used to ask, ‘Why is he bringing his retarded son here?’ and you said to one of them, ‘I think you are the one who belongs in a closed institution.’
Almog proceeded, shortly thereafter, to found just such a closed institution, Nahalat Eran, for vulnerable, defenseless children taken from their families.

Go figure.

Friday, June 11, 2021

Strength in numbers

I belong to two SCN2A WhatsApp groups. One is global, the other is Israeli. The latter is a cozy one of about eight mothers. Their children are all babies - primary school age. None is nearly as severely affected as Haya. (And one of them has four genetic mutations besides SCN2A!)

Occasionally, mothers post clips of their children achieving milestones and we all text our congratulations to them. But, to be honest, those exchanges cause me a tinge of pain and loneliness. Haya is in a league of disability all her own within this group. She just doesn't do milestones.

Yesterday, however, we all bonded beautifully over a group achievement. 

I had attended a Zoom gathering of the global support group two weeks ago where I mentioned that Israeli parents were not included in a certain survey which was limited to families in the US, Canada and Northern Ireland. 

The study we wanted to join is called The SCN2A Clinical Trial Readiness Study. It's conducted by two partners: The Families SCN2A Foundation and the Ann & Robert H. Lurie Children's Hospital of Chicago.

The moderator, Carla Forbes, suggested that if all the Israeli parents would send in the request to be included then at some point in the future the global organization might amend their policy. She sent me the link for that request which I posted to our local Whatsapp group.

Most of the eight Israeli mothers immediately submitted the request. 

And then, I kid you not, manna fell from the skies. We all received an email notifying us that due to the "tremendous" response from Israel, the policy would be changed and we would be included. It said we will receive dates/times for our hour long phone interviews in the near future.

For an organizer, this is probably small potatoes. But I have never organized anything let alone something of such import. So I'm left feeling amazed, thankful and grateful to Carla Forbes, who urged me on. I hope that the years of experience we have had with SCN2A through Haya will provide helpful information via this survey.

By the way, all of the parents of SCN2A children whom I have encountered in both support groups are raising their offspring at home

 And to add to that segue, here's the latest influencer who has joined the ranks of Doron Almog's admirers. 

As posted on the ADI Facebook page, Professor Dr. Yaniv Sherer, CEO of Barzilai Medical Center hosted Almog. Like the many officials who have preceded him - here's my list - he lavished fulsome praise on the CEO of ADI:
“Today, I had the honor and privilege of hosting at the Barzilai Medical Center a man who is a legend, both as one of the greatest IDF combatants of this generation and as a civilian activist. Major General (Res.) Doron Almog, the Founder and Chairman of ADI Negev-Nahalat Eran and an Israel Prize laureate, has transformed one man’s vision into a movement that is shaping the reality of an entire country and society, changing its attitude toward the most vulnerable among us, and spotlighting the idea that ‘𝘁𝗵𝗲 𝘀𝘁𝗿𝗲𝗻𝗴𝘁𝗵 𝗼𝗳 𝘁𝗵𝗲 𝗵𝘂𝗺𝗮𝗻 𝗰𝗵𝗮𝗶𝗻 𝗶𝘀 𝗼𝗻𝗹𝘆 𝗮𝘀 𝘀𝘁𝗿𝗼𝗻𝗴 𝗮𝘀 𝗶𝘁𝘀 𝘄𝗲𝗮𝗸𝗲𝘀𝘁 𝗹𝗶𝗻𝗸.’ The village he founded is a beacon of love, rehabilitation and kindness to its residents with severe disabilities, outpatients and visitors from across Israel and around the world. We are so grateful to Doron for his informative lecture and enlightening conversation with our Barlizali team."
-- Prof. Dr. Yaniv Sherer, CEO of the Barzilai Medical Center, June 7, 2021   
Unlike the politicians whom he is parroting, Professor Dr. Sherer is surely well aware that Almog is operating large, closed institutions for people with disabilities, isolated from the rest of society and now nearly extinct in the rest of the developed world. He ought to know better.

Thursday, June 3, 2021

Deinstitutionalizing Israel: Battling uphill

The Knesset chamber
Yesterday's Maariv revealed that ten years ago Israel's Ministries of Health and of Welfare appointed a committee of experts to submit a report on the problem of residences for people with disabilities. 

However, they ignored the conclusions reached by those experts.

One of the solutions suggested by the experts was for Israel to transition from institutions to independent living within the community. It recommended that no more than six residents live in each apartment.

Bizchut, Israel's leading advocacy organization for people with disabilities, has now publicized for the first time its conclusions regarding that report. 

It discovered that, as of today, a decade later, those recommendations have not been implemented. Large, closed institutions continue to operate and hundreds of people with disabilities are kept in them against their wishes and without the possibility of living independently in the community. Many others must live with their parents.

Tommy Barchako is one such young adult - with CP - who rejected the Ministry of Welfare's placement in a closed institution. 

He says (my translation from Hebrew): 
"The services that I can receive in the community are very limited. They [the Ministry - FR] push people like me into institutions. That solution is unacceptable to me because there are institutions that force you to live a life that you don't choose and that doesn't interest you. But the State has no other solution to offer me."
In response to the Maariv piece, the Ministry of Welfare reportedly stated that 
"...only 16,500 people with disabilities live in institutions [in Israel] - all of their own choice and according to their wishes and the wishes of their families".
For anyone unfamiliar with the reasons for the growing outrage among people with disabilities and their families, below is a CCTV clip that captures flagrant abuse of one such resident:


 
On the two WhatsApp groups to which I belong devoted to activism for people with disabilities, passions have recently been ignited. The video clip above and the latest abuse scandal in Neve Ha-Irus have been the catalysts. 

Everyone is well aware that ours is an uphill battle. We lack large numbers and influential allies.

The list I've compiled below highlights those deficiencies. These are the names of government ministers, assorted lawmakers and various officials who have paid official visits to the institutions of ADI/Aleh in the past two years. While there, they posed for photo ops and lavished praise on Israel's largest chain of closed institutions for those with disabilities, ranging in age from infancy to adulthood. 

They spewed cliches much like those below courtesy of MK Etty Atria Boston who last week paid her second (!) visit in two years to ADI Negev. (The translation to English is again mine.)
You are doing truly sacred work here at ADI, work that deserves great recognition and appreciation. As a Member of Knesset, I promise to continue to serve as an ambassador for enhanced disability inclusion and care for the benefit of ADI's residents and all people with disabilities across Israel. 
The visitors

Sunday, May 9, 2021

Neve Ha-Irus in the cross-hairs of Bizchut - again

From the home page of the Neve Ha'Irus website
Tonight (Sunday) our government TV station, 
KAN, will air a program about an institution for people with disabilities, Neve Ha'Irus

The institution has already been accused of wrongdoing in the past by Bizchut, Israel's Advocacy Organization for People with Disabilities. But the abuse and neglect continued even after token changes were made in the wake of that earlier exposé. 

According to the Whatsapp group of parents and activists to which I belong, tonight's program will reveal shocking images of behind-the-scenes wrongdoing. 

This morning, one of the activists in that group shared a tweet that I have translated from the original Hebrew to English:
Another moment at @kereneubach: The disturbing routine at the institution, Neve Ha-Irus, for people with disabilities under supervision @Social_Justice. In this clip an employee pushes a resident into the "White Room" just because he interfered with her playing on her cell phone. And that's not all: pills, injuries, locking up one resident who became disabled and another who died due to negligence.
Please watch, react and share your outrage. 
The clip embedded below is online here.


And Chezi Shabbat from Bizchut, addressing the same group (my translation again) reminded us all:
When we first visited this institution [Neve ha-Irus], we were impressed with its beautiful appearance; the flowers, the small cottages, the smiling staff. But behind the scenes...? You are invited to see for yourselves. We already know: Neve Ha-Irus is not exceptional. Nobody wants to live in an institution. If you have a loved one living in this institution, Neve Ha-Irus, or in any other institution - contact us [at Bizchut]. We will do everything we can to help you transfer him/her from that institution - to a dignified life within the community.

I would presume the same comments apply to ADI/Aleh!

Meanwhile here are my previous posts, stretching back some years, about Neve Ha-Irus