Is Israel's Minister of Welfare both opposed to institutionalization and in favor of it?

Minister of Welfare and Social Affairs Ya'akov Margi

[Photo Credit: Miriam Alster/FLASH90]

Israel currently has a Minister of Welfare and Social Affairs who is impressively skilled at speaking out of both sides of his mouth. 

When Ya'akov Margi addresses people with disabilities and their activist supporters, he is a passionate champion of their rights to equality. He assures them that he and his staff will endeavor to enable all of them to leave institutions for independent living in the very near future.

He did this in March 2023 at a committee hearing into the report of another committee headed by retired judge Shulamit Dotan. The Dotan Committee's recommendations relate to a new law passed by the Knesset in June 2022: the Welfare Services for People with Disabilities Law, discussed here [in Hebrew].

The committee recommended closing all the institutions for people with disabilities within the next five years and replacing them with solutions within the community. 

It is no surprise that the law's passage was hailed by activists as "dramatic" and "historical" and raised high hopes that Israel would at long last follow the rest of the developed world in shutting down its large, locked, isolated institutions that today house some 18,000 of its citizens with disabilities.

Behind those walls, the basic human rights of these citizens are denied on a daily basis, repeatedly resulting in neglect, abuse and occasionally death.

It is obvious that the new law's achievements will largely depend on the stance of the incoming Minister of Welfare. He will determine the details of the many outstanding regulations that must be established.

One crucial subject, a fraught one, will be budget. Cash will need to be re-channelled away from the institutions to individuals with disabilities.

For years it has baffled many of us who abhor institutionalization that Israel, otherwise such a progressive country, remains in relation to this specific issue mired in the Dark Ages.

It has, however, become increasingly clear that much of the foot-dragging is rooted in the huge profits pocketed by the operators of those institutional facilities. All of the government benefits accruing to the residents of their institutions reach the operators. The Ministry does not trouble itself to demand detailed accounts of the distribution of those funds.

The less those operators spend on staff and care of their residents, the more cash they themselves retain. The many cases of abuse and neglect at those institutions leave little room for doubt about the operators' priorities.

Hence it should not come as a surprise to discover that they exert pressure on politicians to evade the new law and the Dotan Committee recommendations. After all, the status quo is working fine for them.

Usually, though, the public can only imagine the exchanges taking place between those operators of institutions and our politicians.

So it was highly unusual - and shocking - to read of the open assurance made by Minister Margi to one of those operators, less than three months after his address at the committee hearing I mentioned above. 

Image source: The ADI website (Click to enlarge)

Some details:

• According to an early-June 2023 public relations handout, Minister Ya'akov Margi, accompanied by other Ministry officials, visited the ADI Negev-Nahalat Eran rehabilitation village. 
• Alongside its integrated nurseries, rehabilitation center and therapy pool stands a closed institution housing some 163 residents, ranging from children to adults.
• At the conclusion of their tour of the premises which included the institution - or, as it's referred to on the ADI site, the "residential homes" - Minister Margi lavished praise on the enterprise. “I am more than happy to be here today. This place has grown immensely and the entire subject of rehabilitation has blossomed."
• He concluded with these words: “We must copy this village model to other parts of Israel.”

None of this has been reported in the mainstream media yet. Only ADI itself and the B'Hadrei Haredim news site, have publicized it.

But what's abundantly clear is that Minister Margi is eager to spread the curse of institutionalization even further throughout Israel than it currently is.

And the hell with that "historic" new law.

How Israel treats its disabled has been concealed for too long

A version of my opinion piuece below was published by Jewish News Syndicate on January 22, 2023 under the title "Life for Israelis with disabilities is a well-kept secret | For-profit institutions and government neglect have led to brutal abuse and exploitation."

Much has been written about the new Israeli government’s proposed changes to Israel’s immigration laws. This principally concerns the Law of Return, which grants Israeli citizenship to anyone with one Jewish grandparent.

But less attention has been given to another change in aliyah requirements. It affects potential immigrants with disabilities.

Until now, olim with disabilities must physically arrive in Israel before applying for recognition of their disabilities, a demanding and time-consuming procedure. 

Only after this process will they be eligible to receive government disability benefits.

Under the new procedures, they will be able to apply for such recognition before actual immigration.  With their legal rights ensured beforehand, it is anticipated that their assimilation into society will be easier.

This change will almost certainly be enacted. But we do not know whether crucial information will be shared with potential olim during this new process. 

Will they be alerted to what awaits disabled people in Israel? Will they be warned that Israel still warehouses many of its disabled in large, closed and isolated institutions? Will they be informed that the situation with which they are likely familiar in their home countries is a far cry from Israel’s situation?           

In short, will they arrive here with their eyes wide open? 

There are some statistics they would surely like to ponder:

• 88% of Israeli citizens with cognitive impairment who live outside their own homes are institutionalized.  
• 17,000 people live in 491 housing facilities for people with disabilities and special needs. This includes institutions that serve the cognitively impaired, emotionally impaired, autistic and those requiring special rehabilitation. 
• Most Israelis with cognitive impairment and autism live in closed institutions remote from the community, where they are denied the right to autonomy and privacy, and where frequent and severe neglect takes place.
• Some 50% of these closed institutions are operated by approximately 70 different private for-profit companies. The same number of operators are NGOs. Only nine institutions are government-owned.
• Thousands of citizens with disabilities who live within the community do so in difficult conditions of loneliness and without basic services.

These are disheartening numbers that need not be Israel’s reality.

The United Nations Convention on the Rights ofPersons with Disabilities, which the State of Israel ratified in 2012, declares that the state must ensure that people with disabilities live equally in the community and freely choose their lifestyle.

In June 2022, the Knesset passed a law that anchored the right of disabled people to an independent and autonomous life in the community.  This law will remain dormant until the relevant regulations are drafted, with 2024 set as the target date for its implementation. So, there will be no significant change to the status quo for some time.

This is an under-reported topic. As a result, few know that every couple of months, incidents of severe abuse and occasionally death are inflicted on disabled residents of Israeli institutions. When Hebrew news outlets do briefly cover these stories, they tend not to appear on English-language sites.

Over the past six months, four disabled residents have died, three in one institution due to food poisoning, and the fourth in a brutal attack. Another incident of physical abuse was caught on a security camera this month. The perpetrator of the assault, a nurse, has been arrested.

Unfortunately, police investigations are rarely launched and can drag on interminably. Many are closed without any indictments due to “lack of evidence” or “unreliability of witnesses.” When cases are tried, sentences are rarely more than a slap on the wrist. 

Why are these institutions given free rein?

One theory is that the profits they provide are simply too enticing. Greedy operators intensively lobby politicians to keep these institutions open. Naama Lerner of the grass-roots organization Hatnuah L’atzmaut (The Movement for Independence), explains, 

“Since the advent of privatization, operators of institutions receive between 13,000-20,000 shekels/month per resident and are thus highly motivated to retain them. They hire one carer for ten residents so they spend less than 1,000 shekels/month per resident.”

The Movement for Independence is determined to change that. 

Comprised of activists with and without disabilities, family members, experts and laypersons, the group promotes independent living with personal assistance for every disabled Israeli. However, it is facing government apathy and operators’ determination to continue profiting off disabled people.

An Israel-based non-profit called MDF represents these institutions. It was registered in 2009, but its records at the Ministry of Justice appear not to show any activity. The organization has filed only one annual financial report, in 2012. Its registration document indicates that a former member of Knesset, Yoel Hasson, functions as the director of its lobbying efforts. 

In Dec. 2022, MDF organized a protest outside the Jerusalem head office of the Ministry of Welfare to demand increased funding for the operators of privately owned and operated residential care institutions for people with disabilities.

Naama Lerner, who co-founded and today heads the Movement for Independence, staged a one-woman counter-demonstration to criticize the owner/operators.

She said, 

“Death is the really most extreme case. There are many, many, many problems faced by people in institutions. Let’s start with the ‘soft’ items. The ‘soft’ items are that a person is deprived entirely of his privacy. He doesn’t determine who will sleep with him in his room. He will never have a private room. People who are 20, 30, 40 years old who need a private room, personal closet, personal clothing, a moment to be alone. What do the institutions do to prevent this? They shackle them to beds, isolate them in rooms, tie them to restraint chairs, place splints on their arms so they can’t move their arms. All these things are also prohibited by law.”

She went on, 

“A supported housing program is a very important program, and without a doubt, it is the program that every person with a disability will have in the future. Everyone will have an independence-supporter who will accompany them to an independent life, help them build their personal plan and implement it. But unfortunately, today, with the program’s current budget and the severe limitations it places, it really suits but a few, and particularly those who can manage on their own.”

Another organization fighting for deinstitutionalization is Bizchut, founded by the late, legendary social activist Shulamit Aloni. It also believes in the right of every person with a disability to live in the community in a small and intimate setting granting them a life of equality and respect, personal autonomy and full integration.

Bizchut further maintains that, in institutions and hostels, where dozens and sometimes even hundreds of people with disabilities live together, the ability to maintain these basic rights is not possible.

Neither of the above organizations has voiced support for the change in aliyah procedures affecting immigrants with disabilities.

One of the bodies responsible for the change is the Jewish Agency, headed by Doron Almog. Almog is also, ironically, the chairman of two large, closed institutions—Adi Negev and Adi Jerusalem. 

Almog claims to care about the rights of people with disabilities, to which his many speeches and articles on the topic attest. Here is but one example: “The way in which we relate to the most vulnerable among us, those with disabilities and multiple challenges, constitutes the greatest test of our society. It is only when our societies are able to make the care, development and inclusion of everyone part and parcel of our daily lives that we will truly live up to our own ideals.”

But as we know, talk is cheap and it is actions that matter. Almog’s actions consistently contradict his words. For decades, he has championed and helped raise millions of dollars in contributions for the two institutions he chairs. Together they keep 233 citizens, from babies to young adults, locked up and isolated from society.

So, will Almog and the Jewish Agency provide disabled applicants with the information they need before aliyah, such as the contact details of the organizations that endeavor to help people with disabilities live independent lives with government assistance?

Given the disheartening status quo, it is likely that some prospective olim will postpone aliyah until the 2022 legislation has gone into effect or until the advent of a more inviting scenario.

The alternative is an influx of shocked and unhappy new citizens. Would Israel welcome that?

I am the mother of a fragile 27-year-old Israeli woman who suffers from severe physical and cognitive disabilities, including epilepsy and blindness. Keeping her at home where she enjoys loving care from me and my husband is a struggle. But I have no doubt that had we succumbed to the pressure of her teachers and social workers, and institutionalized her, she would no longer be alive.

Now is the perfect time to publicize the ugly truth about Israel’s treatment of its disabled citizens. The secret has been kept for far too long.

Institutions grab headlines again

Beit Bar Dror in the Israeli news (December 9, 2022)

Naama Lerner, our local unsung hero ("A woman of valor" December 11, 2022) followed up her one-person protest with the update below. 

It's so shocking it sounds scripted. But trust me, Naama doesn't do that. (The translation from the Hebrew source on Facebook is mine.)

On Friday morning a news report was published about food poisoning at the Bar Dror institution in Kfar Saba. Thirty-six out of the one hundred residents came down with diarrhea, and some of them even had high fevers.

Does this news sound painfully familiar to you? If so, it's because a few months ago a very similar article was published about the Beit Dafna Institute. There it ended with the death of three residents. This time, miraculously, no one paid with his life.

But is this incident any less serious because of that?

A side anecdote. As you remember, last week private institutions held a demonstration in front of the Ministry of Welfare, demanding additional money and standards. Facing them the Movement for Independence placed signs intended to remind the institution managers of the incidents of neglect, abuse and death that occurred in the last year in these institutions, and of their audacity in demanding money and services.

At some point, some of the protesters began to cross the road and attempt to have a dialogue about what was written on the signs. One of the protesters introduced herself as an employee of the Bar Dror Mossad. She was angry that the signs lumped together all the institutions, and claimed that Bar Dror should not be included with the institutions where residents died due to neglect or abuse, since no untoward events had occurred there and it is exemplary..

"Our facility is different," she claimed. "It operates in an exemplary manner".

Less than a week has passed, and the news about food poisoning at the Bar Dror institution has been published. Need another explanation about the inclusion of all institutions under the same umbrella? Who is next in line?"

And now "hot off the press", an update on that update:

Sanitary deficiencies were discovered at the Bar Dror institution, a hostel for people with special needs, in Kfar Saba. The Ministry of Health today (Wednesday) issued an instruction to close the kitchen at the institution after tests of food samples revealed low levels of Clostridium bacteria and E.coli bacteria. Although these levels do not cause illness, they do indicate poor sanitary conduct of the institution." [Source: Walla (Hebrew)]

It doesn't seem like this institution will be excluded from the inclusive list of "bad entities" anytime soon.

And while we are agreeing on that generalization, note that Doron Almog's "babies" (ADI Negev and ADI Jerusalem) are two more such private, large, institutions enclosing people with disabilities from infancy to middle age. 

But that fact is carefully swept under the carpet. Instead, Almog, now head of the Jewish Agency is touted as a champion of the rights of people with disabilities. 

Here is but one example of many such distortions. Since he became chairman of the Jewish Agency, Almog has been promoting a policy of opening up the world of aliyah to all types of Jews in the Diaspora, including those will special needs. As the Jerusalem Post recently wrote: 

This topic is especially close to his heart, as the founder and chairman of the rehabilitation village "ADI Negev-Nachalat Eran" which has become a model for integrating people with disabilities. 

Which brings to mind Abraham Lincoln's words: “You can fool some of the people all the time; you can fool all the people some of the time; but, you can't fool all the people all the time.” 

Some of us are not fooled about Doron Almog.

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.

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.

Actually, zero steps forward

A recent meeting of the Israeli cabinet [Image Source]

Last week, I asked our WhatsApp group of disabilities activists/parents for an update about the scheduled Government of Israel cabinet meeting that was going to discuss a proposed grant of 126 million shekels (roughly $40.8M in US currency) to ADI Negev to fund its expansion. 

The meeting that had gotten my hopes up sky high: "Ministerial scrutiny of Israel's largest institution for children with disabilities?" (Dec. 12, 2021)

Here's the response sent by a member who is also a staff member of Bizchut, Israel's leading disabilities rights organization:

"To our dismay, the government authorized the transfer of funding to Adi Negev. We will continue to fight for a halt to the State's investment in institutions, both large and small and in services that result in the separation of people with disabilities from the community and for its investment of resources towards services within the community..."

There is such a bundle of bad news in that response that I'm still struggling to fully digest it. 

The major message I deduce is this: Nowadays in Israel, "protektzia" - i.e. connections - still reigns supreme. By that I mean it rides roughshod over everything else: morals, ideals, international conventions, progress, the welfare of the downtrodden and of the vulnerable and above all of people with disabilities.

Even in 2022. 

ADI Negev, blessed with limitless protektzia in the form of its founder and chairman Major General (Res.) Doron Almog, clearly sailed through that cabinet meeting where its lavish cash gift was discussed.

Then there was absence of any reactions to that update from anyone else in the WhatsApp group That one has me stumped.

Where is the fury that I feel?

The struggle for equal rights for all will continue. But my hopes for victory here in Israel have been definitively and thoroughly dashed.

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.

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.

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.

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.

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.

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.

Two sisters

Malki, at the age of eleven, holding her
baby sister Chaya.
Malki was murdered in a
terror attack when she was 15.

While today is a joyous holiday for most of us, it is also the day following Yom Hazikaron for us. As such, it visits lingering grief, longing and anger on me and my family more intense than we feel every day.

Malki was so very unique and precious a child that having her snatched from us by the mass murderers Hamas and Ahlam Tamimi is a pill that sometimes feels too bitter to bear.

I am left with two hopes: that Malki will continue to be remembered for her goodness and talents by all who knew her and that she will see justice done in the near future. Her murderer, Tamimi, is free as a lark thanks to her release by PM Binyamin Netanyahu in 2011 as part of the outrageous Shalit Deal.

Until the day of her murder, Malki was a devoted sister to Chaya. She eased immensely the burden of raising such a disabled child in ways that I don't believe another teenager ever could.

I am certain that she too would be distressed by today's presentation of the Israel Prize to this country's single most passionate and successful proponent of institutionalization of children with disabilities - Doron Almog.

Here is a transcript of more of Almog's rationalization of founding the enormous institution "Aleh Negev" and depositing his late son, Eran, there at the age of 13. (The interview is from a YouTube video here, in Hebrew. I translated to English):

"Between me and Eran there is a deep discourse. He tells me: you could be ashamed of me like many other parents. You could put me up for adoption with a family overseas never to visit ,never to tell anyone, to hide the fact that you have a retarded child. If you do that you are the weak one of us two. Your being ashamed reflects on you, you are not a father for me, perhaps not even worthy of the title "human being". And because I'm really the weak one between us I need your protection..." 

Almog notes that

"there are more than a few parents who don't visit, though we make efforts to have them come; not a few are abandoned."

Almog never gives a number; "not a few" is deliberately vague. We are left to wonder whether perhaps a significant number of parents want no contact with their children. If that were the case, wouldn't Almog specify it? After all it would buttress his and Aleh's  premise that institutions are a necessity.

Clearly, it is minimal. The majority of parents want to love and care for their children. They simply find the burden overwhelming in their current circumstances. This has been Lumos' experience in far more impoverished countries than ours.

Here, with 85% of Aleh's annual $30 million budget [source] shouldered by the Israeli government, it is no wonder that mere pennies remain for the children who are living at home.

Like a thug who beats you up and then offers you a hankie to wipe away the tears, our government neglects children with profound disabilities living at home, lavishes multi-millions of dollars on institutions and declares to us: "There you are! A grandiose solution for your poor children!"