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.  

Pursuing ketosis

We finally found online and purchased those elusive keto sticks I wrote about two weeks ago [Update: Meals and therapies]. They enabled us to check Haya's ketone level in her blood. As she is in nappies, the locally and readily available urine test strips were not an option. 

While our health fund practically donates the device itself for 20 shekels, it doesn't stock the blood ketone test strips in any of its pharmacies. Nor does any other of its pharmacies! 

(Note: Please advise me if you know of an in-Israel supplier. The strips we bought currently cost us 20 shekels for every test.)

Here is Haya being tested:

So far she has had ketone levels of: 5.2, 1.2 and 1.9. Those results were each 5 days apart.

We're hoping to raise her ketones to her first result as she's still having strong seizures a few times a day.

But here she is yesterday at hydrotherapy with her arms more relaxed than usual after I have massaged and opened them.

And here I am demonstrating via a self-portrait what the awful combo of Covid-19 pandemic and preparing keto diet meals can wreak on one's appearance.

Haya's update: It's a downer

I'm holding a made-in-Israel Cannabis

THC drops product in this photo

Meds

Today is Haya's first day without any Vimpat. We had her on 25 mg per day for about ten days, down from her maximum of 150 mg twice day. I intended to wait until her seizures stabilized before zapping Vimpat entirely but seizures have been rampant. 

And we need Vimpat out of the picture before we can accurately assess Fycompa.

My hunch is this med isn't Haya's magic bullet. Which means we'll probably move on to the next gun - the Keto Diet.

These days, when all else fails I've been giving THC drops to stem the strings of seizures. Here she is (below) after 22 drops of it looking, I'd say, rather high.

Blood

It took about two weeks to organize but I was finally notified by our health fund that tomorrow, weather permitting, a visiting nurse will come to our home to draw Haya's blood. It will be used to do routine tests along with a Covid-19 serological test.

If we find that she has antibodies, we can stop deliberating over the vaccine - at least for a few months.

Hydro

On Monday, after a five week, Covid-19-caused hiatus, Haya finally returned to the pool. She relaxed and floated independently for the most part but her body often tilted to the left. That was disappointing. 

I showed my son-in-law who is a physiotherapist/hydrotherapist a video clip of her in the water. He recommends re-positioning her arms to the right as they rest on her chest and placing her left hand on her right. The clip shows that they were reversed. 

Can't wait to try those tips next session.

Haya

Labels

I often read posts by parents of children with a range of disabilities on various support group sites. Some are caused by the same genetic mutation as Haya's, some by other mutations and some by none. It's a very disheartening pastime.

I'm usually struck by how much higher everyone's level of functioning is than Haya's. And when they have epilepsy, by how much their seizure-control surpasses hers.

On a site devoted to people with Downs and their families I encountered a word now circulating: other-abled, as an alternative to the "D" word.

The truth is it's entirely inapplicable to Haya. She simply isn't other-abled. She truly is disabled, profoundly and I prefer to call a spade a spade.

Aleh and ADI: Allies or adversaries?

Wonder of wonders: the information I requested in mid-August from the Ministry of Labor, Welfare and Social Services under the Freedom of Information law arrived!

The very welcome spreadsheet has statistics regarding the residents of institutions for people with disabilities which are under the Ministry's supervision. Tallies and dates for residents who were quarantined, ill with the virus and passed away from it are all there.

I'll cut to the chase: Twenty-one residents had succumbed to the virus as of November 25, 2020. One was from Aleh Gedera and a second from Aleh Negev.

Why is this being concealed from the public?

In the meantime the apparent fist-fight between Aleh and the newly created ADI shows no sign of resolution. So, if you go to Aleh's Facebook page and click on the words "Updated website address", you will not arrive at Aleh. Instead you reach an ADI site about its two institutions: ADI Jerusalem and ADI Negev Nahalat Eran. 

You'll also see plenty of adulatory words about and photos of Doron Almog.

If you return to that Facebook page and click on "Aleh has updated their info in the About section", you'll arrive at a page telling you in Hebrew: "The requested page cannot be found"

I'm sure there's a simple explanation for the chaos - which I'm eager to know already.

The crucial question is: How is this upheaval affecting the children in Aleh and ADI's care? And will it reduce government funding of those institutions?

Are we, perhaps, on the cusp of the start of deinstitutionalization of children with disabilities in Israel?

Praying we are.

To quote Diana Ross: I'm still waiting

The Diana Ross song is here

Waiting, waiting and waiting some more. Aside from the US presidential election results, we're doing a heck of a lot of other waiting.

1. While she suffers from daily, debilitating seizures, we're waiting to get that new med, Fycompa (generic name: perampanel), for Haya. The neurologist mistakenly sent us on the 29 Gimel track for authorization. It turns out he isn't familiar with the workings of Israel's health funds so he's not to blame. I've been speaking to both our pediatrician - who must write us the script - and the secretary at the health fund office in order to get this process on the right track. For now, the ball isn't even rolling yet. And authorization remains a dream. 
2. I am also still awaiting a response from the Ministry of Welfare regarding the residents of institutions under its supervision. Specifically, what I want to know is in which institutions the victims of Covid-19 lived when they fell ill. Under the Freedom of Information Act, the public is entitled to that. It even has a name: segmentation. I was only given general numbers by the Ministry back in July. To date, the Ministry has only responded to extend its time limit. I've learned that it is entitled do that three times to reach a maximum of 120 days At that point I can proceed to the government ombudsman.
3. Waiting is ongoing for a response from the Ambassador of the Netherlands to Israel who is scheduled to speak at an Aleh event next week. Why would an ambassador from a country where family care is the accepted policy for its children with disabilities promote the removal of children from families in Israel!? I will share his response as soon as it arrives here.

But at least we're not waiting for magnificent hydro sessions for Haya. This week, due to some malfunction, the pool we rent for her therapy was heated to 34 degrees Celsius. That meant we were able to dispense with her wetsuit, allowing for greater freedom of movement. 

Here she is, relaxed and floating skillfully even without the added buoyancy of the wetsuit.

Good job, Haya!

My Monday

My Monday was largely devoted this week to my daughter Haya and her disabilities.

First was a morning tele-visit with her newest neurologist. We had consulted him a couple of times some fifteen years ago but haven't had contact since. Now we have returned to him primarily because of his expertise in medicinal cannabis. He joins our list of the 20 or so neurologists already consulted for Haya throughout her life. 

But the upshot of Monday's consult with him was to leave our cannabis dose as-is and weigh other treatment changes. Our quest for the elusive epilepsy control continues.

These are the three options the doctor served up:

• Replace Vimpat with a new drug, Fycompa (generic name: perampanel)
• Give the Ketogenic Diet a second shot. We tried it for about 10 months when Haya was about four years old and failed
• VNS surgery which would involve removal of the old one implanted in 1999 and non-functional for most years since then, and implantation of a new, improved version.

We intend to first try Fycompa which has the least hope of success given the many drug failures that Haya has already chalked up. So we've already submitted the requisite Form 29 Gimel to our health fund to receive authorization of "private importation of a drug that isn't registered in Israel". 

It was approved by the FDA in October 2012 but somehow remains in that category in Israel. 

Simultaneously, we'll pursue the Ketogenic Diet and the VNS surgery, both of which will take a while to arrange. Both offer more hope than medications.

The second event yesterday involving Haya was a Zoom session with a half dozen other parents of children who have the SCN2 mutation. It was organized by Dr. Anne Berg who is researching treatments for SCN2A patients. She wanted to speak to parents in advance of upcoming clinical drug trials. 

At Aleh during Sukkot, extremely vulnerable but maskless children

It was interesting to hear from parents around the globe, and I mean that literally: a father in India, a mother in Dubai (she actually splits her time between Dubai and Spain), and mothers from various States in the US including Pennsylvania.

Here is some background info about our group which has 670 members. The mother speaking on this clip, Leah Schust Myers (in the screenshot at the top of this post), is the one who organized yesterday's Zoom encounter:

And while the devotion and determination of the SCN2A parents I met was impressive, the ongoing institutionalization of Israel's children with disabilities is very UNimpressive. 

Our Ministry of Welfare remains mum about where the victims of Covid-19 with disabilities residing in their institutions lived, although their deadline to answer me under the Freedom of Information Act passed four days ago. They've now had over two months to provide me - and by that I mean "the public" - with that easily attainable information.

And here [Facebook link] is Aleh broadcasting to the public how very high risk its residents are for becoming seriously ill with Covid-19. 

They've posted this on their Facebook page:

Uzi and the oxygen balloons at Aleh

"Here in Aleh:
There's a program for life-saving respiratory therapy. Most Aleh residents suffer from respiratory compllications, breathing difficulties which often cause pneumonia and hospitalization.
Consequently, the respiratory therapy program of Aleh offers respiratory therapy personally adapted to the residents. The therapy includes the use of equipment and sophisticated devices that clear the lungs and intensify breathing. 
Breathing activation several times a day is incorporated into all daily activities. This photo shows Uzi bringing more oxygen balloons for reinforcement at Aleh."

And that's Aleh's Uzi and the oxygen balloons in the photo above.

Nevertheless, Aleh's high risk residents continue to be housed and placed in close contact to one another and without masks. See the photo above from their Facebook page showing extremely vulnerable - but maskless - children seated close together under a large umbrella being waved by the attendants, "celebrating" Sukkot.

Why???

Israel's Ministry of Welfare is still concealing information

The ministry's Jerusalem head office [Image Source]

Here in Israel, we are still anxiously awaiting a significant drop in the upsurge of Covid-19 infections, to enable an easing of our restrictions. And to think, just a few months ago we led the world with our low Covid-19 stats.

In the meantime, the wall of silence I have hit remains intact [see "Freedom of information"]. There is no sign that our government will enlighten us about our Covid-19 victims with disabilities any time soon. 

The Ministry of Welfare (משרד העבודה הרווחה והשירותים החברתיים to give them their full and current name - translates to Ministry of Labor, Welfare and Social Services which no one ever calls them) was legally obligated to provide us with the information we seek by October 10th, under the Freedom of Information Act.

But it's a safe bet that the "check isn't even in the mail".

So we remain in the dark about "segmentation", to use the Ministry's favored term... meaning we still don't know the names of the institutions in which those victims were locked.

Not only is the public entitled to that information, for many parents of children with disabilities it is crucial.

As this pandemic stretches on, many parents are left in a quandary. Should they keep their children at home or relinquish them to institutions, as our government urges us all to do? Should they struggle to provide their children with the specialized care and therapies they need or hand them over to government subsidized, large, closed institutions where such amenities are purportedly provided?

Before Covid-19 struck, professionals the world over maligned those institutions for robbing children of the love, attention, constancy and emotional stability that every child deserves and needs. But now, in the Covid-19 era, it could well be that removing a child from his family will actually endanger his very life. 

Bear in mind that most of them are at high risk for being severely ill with the virus. It has been proven that those with neurological impairment or genetic mutations are in the high risk category.

Life in a large, closed facility with rotating care-givers is obviously not the ideal setting for avoiding Covid-19 infection.

Once the holiday season is over and this strict lockdown is eased, I hope that the Ministry of Welfare will fulfill its obligations to release the information it has been concealing for so many months.

So what exactly does Aleh stand for?

Haya in today's therapy. The finger pointing
is in response to my question about food. My
non-verbal daughter is saying 'yes'.

How very odd that Aleh is offering a preparatory course for professionals who counsel parents of children with disabilities.

The announcement [Facebook] states that the  course is predicated on the premise that

"parents are the light-tower for families and are the best experts for their children while professionals are their partners and escorts along the way and [the course] will give you workable tools to succeed in escorting parents hand in hand with confidence and professionalism".

How do we reconcile that with that other basic Aleh premise that pervades all of its marketing? That children with disabilities are best cared for in its large, closed instructions where they have, as the Aleh website describes it:

"the best available care and the opportunity to grow and develop to their fullest capabilities."

I once contacted Aleh's hotline, bemoaning the difficulties in caring for my daughter at home and was told by the person manning the service that if I sent her to live in one of their large, closed institutions, I and my husband would "get our lives back".

So Haya gets some food

That's the duplicity that pervades Aleh.

Meanwhile at home today, my daughter Haya enjoyed another "Covid-style" session with her speech pathologist. We've been having them on the balcony of our apartment. But Jerusalem's intense heat didn't allow this afternoon.

So the therapist sat, masked, at one end of our living room while Haya and I sat at the other.

I followed the therapist's instructions as you can see in these still shots taken from our video of today's session.

Haya sticks out her pointer finger when she wants to convey "yes". Getting her to do this has taken us some years of therapy.

Expectations are low and progress is painstakingly slow. That's the way it is with Haya.

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

Haya floating unaided in the pool 

I just discovered

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

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

And the following day:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Image Source: Israel National New

Live and learn.

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

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

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

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

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

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

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

Source: Screen Cap

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

We learn from Aleh that afterwards the Minister 

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

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

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

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

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

Dealing with cluelessness

Screen capture from the published Aleh video clip

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

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

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

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

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

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

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

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

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

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

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

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

Hoping that I can share that with you soon.

The case for de-institutionalization in the COVID-19 era

This photo is not related to ALEH [Image Source]

A friend of mine is on the Aleh supporters mailing list. She shares some of what she gets from them with me. Consequently, I am privy to the obfuscations and deceptions that are routinely disseminated therein.

As I type this, I'm still grappling with their latest one. It describes Aleh's residents as "hundreds of immunocompromised children and young adults with severe complex disabilities".

At about the same time that went out, the dogged Aleh PR team posted a video clip on its Facebook page demonstrating that many of the residents at Aleh Gedera are actually far from "severe, complex cases of disability". They undoubtedly could and should be integrated into Israel's general community and living in family settings just as UNICEF and the The Lancet unequivocally call upon ALL states to do (as I argue in my most recent post: "To the Government of Israel: Listen to The Lancet").

Now, more than ever, during this pandemic, that move is urgent. As has been documented and as I wrote in my previous blog post, the most risky place for immunocompromised people to be is in a large, closed institutional setting.

The following local statistics make this abundantly clear.

Following repeated requests by me to Israel's Ministry of Labor and Welfare for an update of COVID-19 infections in institutions for people with disabilities, I finally received one yesterday:

39 frameworks of the disabilities administration have been quarantined due to exposure to a confirmed sick person since the start of the Corona outbreak, a total of 147 staff members and 283 residents have been diagnosed as ill. These statistics refer to the total of the frameworks under the supervision of the Ministry of Labor and Welfare. We note that for segmented data and information you must apply to/turn to the Unit for Freedom of Information.

I had specifically requested the inclusion of the number of deaths from COVID-19 as well but, as you see, it was specifically omitted. 

So I re-requested that number and yesterday received this response:

To date, 8 patients are known to the Disabilities Administration in the Ministry to have passed away due to Corona. For further information you must apply to the Unit for Freedom of Information.

Don't these numbers make the case for de-institutionalization in Israel a slam dunk??

To the Government of Israel: Listen to The Lancet

I snapped this today

I passed this scene in a park near my home - people with disabilities enjoying themselves outdoors despite Covid-19 and thanks to kind volunteers.

And not locked up in institutions!

Israel's institutions for people with disabilities concede that this pandemic has them in a tight spot. Their resources - financial and human - are seriously depleted. Nonetheless they still insist that institutions are ideal for their residents.

Aleh, for instance, Israel's leading chain of such institutions, is relying on Covid-19 to solicit extra (!) handouts from government and private donors [LINK].

Those of us who oppose institutionalization are baffled.

Obviously the ease with which Covid-19 spreads in large, closed facilities should stress the urgent need to de-institutionalize. We'd expect this pandemic to propel our government to finally promote alternative living options for our most vulnerable population.

So it was with huge sense of vindication that I read recentlly published articles by experts advocating the immediate transfer of citizens with disabilities to families. They view this pandemic as the perfect juncture for that move and note the success of past de institutionalization in North America and Western Europe. Their unequivocal conclusions appear in none other than The Lancet.

a weekly peer-reviewed general medical journal. It is among the world's oldest and best-known general medical journals. The journal was founded in 1823 by Thomas Wakley, an English surgeon who named it after the surgical instrument called a lancet (scalpel), as well as after the architectural term lancet window, a window with a sharp pointed arch, to indicate the "light of wisdom" or "to let in light". The journal publishes original research articles, review articles ("seminars" and "reviews"), editorials, book reviews, correspondence, as well as news features and case reports. [Wikipedia] 

Some excerpts [Source: "Institutionalisation and deinstitutionalisation of children 2: policy and practice recommendations for global, national, and local actors", Lancet Group Commission, June 23, 2020]

Worldwide, millions of children live in institutions, which runs counter to both the UN-recognised right of children to be raised in a family environment, and the findings of our accompanying systematic review of the physical, neurobiological, psychological, and mental health costs of institutionalisation and the benefits of deinstitutionalisation of child welfare systems...We define an institution as a publicly or privately managed and staffed collective living arrangement for children that is not family based, such as an orphanage, children’s institution, or infant home...
A December 2019 UN General Assembly Resolution on the Promotion and Protection of the Rights of Children recognises that a child should grow up in a family environment to have a full and harmonious development of her or his personality and potential; urges member states to take actions to progressively replace institutionalisation with quality alternative care and redirect resources to family and community-based services; and calls for “every effort, where the immediate family is unable to care for a child with disabilities, to provide quality alternative care within the wider family, and, failing that, within the community in a family setting, bearing in mind the best interests of the child.

Same place, same time - my photo

And these bullet point recommendations appearing in the same source, quoted from key recommendations for the December 2019 UN General Assembly Resolution on the Rights of the Child:

• Recognise and prioritise the role of families
• States [emphasis added] are responsible for promoting parental care, preventing unnecessary child separation, and facilitating reintegration where appropriate
• Families have a crucial role in physical, social, and emotional development, health, and intergenerational poverty reduction
• Services delivered to children are most effective when they consider the vital role of family
• Formal alternative care should be temporary
• Care options should prioritise kinship care, foster care, adoption, kafalah, and cross-border reunification...
• States are encouraged to work to change norms, beliefs, and attitudes that drive separation [emphasis added]
• States should recognise that reintegration is a process requiring preparation, support, and follow-up
• Recognise the harm of institutional care for children and prevent institutionalisation
• States should phase out institutions and replace them with family and community-based services
• States should address how volunteering and donations can lead to unnecessary family–child separation
• States should recognise that funding for institutions can exacerbate unnecessary family–child separation and institutionalisation

And these bullet point insights from another The Lancet article published the same day, last month [here]:

• Millions of children worldwide are housed in institutions, although the number appears to have decreased in recent years
• Many countries are increasingly supporting alternative, family-based approaches to care—eg, kinship networks, foster care, adoption, or kafalah
• Residency in an institution is associated with substantial developmental delays and other risks to children
• Longer stays in institutions are associated with larger developmental delays and atypical development in a dose–response manner
• Delays are most prominent in physical growth, brain growth, cognition, and attention; atypical attachments are also seen
• Children show rapid recovery in the years immediately after deinstitutionalisation, particularly in physical and brain growth, although substantial impairment can persist for the most seriously affected children over the longer term

Israeli Knesset members, "states" includes you! 

How many different ways does the message need to be stated before it gets through? Remember, the State of Israel provides its largest chain of institutions, Aleh, with over 80% of its budget.

Lawmakers, listen to The Lancet!

Will COVID-19 hasten the end of institutionalization?

My daughter Haya at home this afternoon

This week, Aleh, Israel's leading chain of large, closed institutions for people with disabilities honored a donor from England who passed away in June. She had been eulogized on Aleh's website.

To mark the end of the shloshim period - the 30 days of mourning after passing - she was memorialized with a garden by Major General (Res.) Doron Almog. Almog is credited with establishing Aleh Negev, one of the four branches of the Aleh enterprise.

The donor's work for Aleh was described on its website as "promoting the care and inclusion of people with special needs".

As I have been endeavoring to explain for years now ("Institutions: The world goes one way, Israel and Aleh the other" as just one example), locking children and adults in institutions in no way promotes inclusion. 

The damage done by institutionalization is now acknowledged everywhere in the First World - excluding Israel.

It is striking that the resident of Aleh Gedera, another Aleh branch, who passed away from Covid 19 in April ["Following a Covid-19 death at Aleh, a troubling silence"] has never merited so much as a fleeting mention, let alone a eulogy or a memorial garden on Aleh's website or its Facebook site.

In these dystopian times, it would be appropriate for Israel to finally reassess its policies for care of children and young adults with disabilities.

Institutional living has long been maligned by professionals as detrimental to the well-being of its residents. Emotionally, cognitively and physically it is, all agree, the worst of all living options. It still flourishes only in one developed country: Israel.

There are myriad explanations for that anomaly but one crucial one is the entrenchment in Israel's psyche enjoyed by Aleh, it major chain of large, enclosed institutions. Remember, the residents of those institutions are at high risk for becoming seriously ill with Covid 19 by dint of their disabilities alone. 

The following conditions are cited by the United States' CDC - The Centers for Disease Control and Prevention - in its long list of endangering pre-conditions:

Children who are medically complex, who have neurologic, genetic, metabolic conditions, or who have congenital heart disease are at higher risk for severe illness from COVID-19 than other children.

Below are the statistics that I received from Israel's Ministry of Labor, Social Affairs and Social Services (משרד העבודה, הרווחה והשירותים החברתיים) on June 22, 2020 in response to my questions regarding residents of institutions for children and adults with disabilities within its purview (that includes the Aleh facilities):

In the 37 living settings under the supervision of the Disabilities Unit of the Ministry of Labor and Welfare, there were those who were quarantined or ill. Currently, 6 facilities are quarantined. 1,037 residents have been quarantined since the outbreak of Corona - today 91 residents are quarantined. In all, 37 staff members and 87 residents were diagnosed as ill. Today 8 residnts are ill. These statistics refer to all the settings in our purview.

With alarming numbers like these, and the obvious risks inherent in housing high-risk populations in close, closed quarters, I would have expected this government to rethink its policies towards people with disabilities.

Now is the time to finally play catch-up with the rest of the developed world and promote in-community living for all people with disabilities.

Instead, we only see Aleh using this pandemic to self-promote and solicit donations with heightened intensity. The government, needless to say, continues to fund Aleh and other large, closed institutions with the same largesse it always has.

But not everybody has remained mum. Below is a letter penned by a citizen with severe disabilities that has been circulating in recent days among disabilities activists. Anybody with disabilities or parents of those with disabilities is invited to co-sign it. Please contact me if you are interested in doing so.

[Note: the following is my translation of the Hebrew original]

Itzik Shmuli
Minister of Labor and Welfare
Subject: Request for a meeting to promote in-community living for people with disabilities
Shalom,
First of all warm congratulations on your new government position. My name is Tommy Barchenko, 23 years old. I have complex physical disabilities I am mobile in a wheelchair and communicate via a communication computer. I am a social activist on behalf of the civil rights of people with disabilities primarily in the areas of accessibility and welfare. I turn to you, along with another group of young people with disabilities requesting a meeting with you, about the topic of people with disabilities in Israel and in particular in-community living.
We wish to live independently within the community enabled by the provision of support services and a personal assistance basket. Within the community and not in assisted living (i.e. closed, group setting).
And we request that the funding earmarked per individual for assisted living be channeled to us so each of us can acquire the services and assistance and the support and the therapies according to his individual needs within the community.
According to our world outlook, living accommodations for people in the State of Israel are not correct and on a daily basis violate basic human rights.
In hostels for people with disabilities operated by the Ministry of Welfare, there is a serious violation of human rights and we have witnessed incidents of very severe abuse and even death in a number of hostels.
And together with you we want to change this and bring a better future for people with disabilities.
We think that we can work together with you to get to a better place.
We would like to meet with you and discuss these things.
We would be happy if you would answer positively.
With thanks and good wishes,
Tommy Barchenko
Tomer Isaac
Martin Zhorbalov

The photo at the top of this post shows my daughter Haya practicing her switch-pushing skills at home today and listening to the music she loves.

An Aleh update

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

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

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

Will we ever learn what became of those forgotten five?

On sophistry and silence

Aleh Negev announced the resumption of visits to its institutionalized children after a hiatus of some two months.

In a Facebook post preposterously entitled "Family Above All", its PR cronies described the reactions of the children as "very emotional.

The mother of one of the residents at the village (a favored Aleh euphemism) described [here] the encounter as

the most impactful she had ever experienced with her son, one which stirred many emotions in these times. We realize that a hug from a mother and father, sister or brother, is very significant and has no substitute" (my emphasis, and my Hebrew-to-English translation). 

Really?!

Is that why Aleh encourages parents to abandon their children with disabilities? To entrust them to the care of strangers in its institutions? Is that why Aleh sucks government coffers dry for financial support instead of enabling parents to receive it for care at home?

Once again, Aleh's duplicity and hypocrisy know no bounds.

Note: To date, Aleh has not aknowledged, expressed grief, or eulogized the resident who contracted Covid-19 at its Gedera branch and who passed away in mid-April [see "Following a Covid-19 death at Aleh, a troubling silence"]. On the other hand, it has eulogized on its website [here] an elderly British donor who succumbed to the virus.

The silence speaks volumes.

A cash award for a cover up?

Screenshot from the Aleh website capturing
the parade accompanying the return of some
hospitalized residents [Facebook]

As a bereaved parent - my daughter Malki was murdered in the Hamas bombing of Sbarro in 2001 - I was disturbed by Aleh's callous use of Yom Hazikaron [Remembrance Day] to fundraise via its Facebook page.

I am equally appalled by Aleh's persistent silence about the death of one of its residents - a 41 year old woman - to Covid-19 on April 13 ["Following a Covid-19 death at Aleh, a troubling silence"]. Some sort of tribute - even a mere mention of her passing - would have been expected. But as we approach her shloshim, there has still been none.

On the other hand, a birthday party for a pre-schooler living in an Aleh institution was reported in detail [here - video] along with several photos and a video of "the event". Staff members are shown dancing around the child in her wheelchair.

Likewise, an announcement [here] of Natan Sharansky's decision [archived] to donate to Aleh, a portion of the Genesis Prize he won was publicized with accompanying photos.

But the death of a resident? It merits not a word.

Aleh has been similarly mum about several of its residents hospitalized with Covid-19. On April 13,  nine were reported on Ynet as being treated in hospitals scattered around the country

On April 22, Aleh's PR lackeys posted a "ticker tape parade" that was staged to welcome four of those residents back to Aleh Gedera. The public has learned nothing about the remaining five ill residents.

I suppose Aleh presumes the public will just assume Aleh residents suffered from Covid-19 much as other residents of closed facilities where the virus spread like wildfire.

Well, some of us not only remember this cover-up. We are pushing for the changes that were long overdue here; changes that would have prevented the three - yes, three - separate outbreaks of the virus in Aleh facilities.

Were this government more attuned to the needs of people with disabilities and to the trends in care-giving that have already been adopted throughout the developed world, Aleh would not be thriving.

To Aleh: Time for transparency

The death of a 41 year old woman living at Aleh Gedera ["Following a Covid-19 death at Aleh, a troubling silence"] was reported on April 14. Nevertheless, there is still no acknowledgement anywhere on the Aleh sites or Facebook pages of her passing. She was one of the youngest of Israel's victims of the virus.

Despite studiously ignoring that tragedy, Aleh's PR hacks have utilized Covid 19 to the hilt for its fundraising activities.

Aleh staged a lavish welcoming splash - Israeli flags lined the streets, music blared from a van - to greet the return of four other residents who had been hospitalized for weeks with Covid-19. 

On April 14, the news services reported that nine Aleh residents were hospitalized in several hospitals. What is the current condition of the remaining five? Aleh has not shared that information with the public.

This obfuscation on the part of Aleh, Israel's largest chain of closed institutions for people with disabilities is beyond objectionable. It is the height of insensitivity and callousness towards its vulnerable, helpless population, many of whom are babies and children.

This attitude is coupled with a freewheeling approach toward utilizing its healthy residents for photo ops. So on Yom Hashoa, numerous photos of "commemoration" of the day in Aleh institutions were posted on its sites. 

As the mother of a 25 year old daughter with profound and complex disabilities, I can assure you that not one of the residents pictured grasped the significance of the day in any sense! The photos made a mockery of Yom Hashoa by mining it for financial gain.

As a bereaved mother whose child was murdered in the terror bombing of Sbarro in 2001, I dread seeing how Aleh's heartless PR team will cash in on Yom Hazikaron next week. But I have little doubt that is just what they intend to do.

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

Children in a video clip posted by Aleh [Source]

It is a tragedy - but not a surprising one.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No news is NOT good news

For background, click here to review my previous post

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

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

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

Needless to say, that should be alarming. 

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

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

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

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

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

In its recent circular, Bizchut wrote:

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

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