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!

Is King Abdullah II a latter day President Diem?

I was watching an incredible documentary "The Vietnam War" last night. It's not my first time but it never fails to rivet, shock and infuriate.

At one point, the narrator says:

"Diem became widely popular because he seemed to embody the nationalist cause in the South. On October 26, 1955, Ngo Dinh Diem named himself the first President of the brand new Republic of Vietnam."

Leslie Gelb, the late foreign policy expert, then comments:

"He became our ally, or rather our master. Because the goal of preventing the Communists from taking over the South was so strong that we couldn't afford for him to lose. So Diem started to boss us around. And this was a typical relationship. You need any ally you believe to be the centerpiece of your foreign policy, they understand that right away. And the tail wags the dog.'"

Gelb also said:

"Everyone understood that in and of itself. Vietnam didn’t mean very much. But they believed, I believed, if we lost it, that the rest of Asia would tumble to communism."

The parallel between that fatally flawed presumption and the one that has entrenched itself in US leaders regarding Jordan and King Abdullah II and the thwarted extradition of Ahlam Tamimi is obvious. 

We have heard ad nauseum that Jordan's ruler is the linchpin of Middle Eastern stability and absolutely, positively must be bolstered. Nothing, not even a straightforward demand for justice, may be permitted to endanger his hold on power.

When you think about it, aren't we now seeing a Jordanian tail wagging the American dog?

My daughter's rough week and some thoughts from ALEH and UNICEF

Me walking Haya last night. That little
tongue sticking out is how she shows
she's feeling happy

It has been a trying week, Haya-wise.

It began on Shabbat with your garden-variety vomiting - distressing enough. That then progressed to vomiting containing dark brown liquid (i.e. raising suspicions of blood). For a while, she couldn't even hold down water. 

We seriously considered rushing to the ER as we have done in the past with such symptoms. But the thought of hours waiting in a crowded public hospital ER with Covid raging around us scared us off that option. So we grit our teeth - and for my part also cried. And kept on doing so until the symptoms improved somewhat. 

Haya's wonderful pediatrician was assuring throughout this period (and since her stools were blood-free, he eliminated a few concerning diagnoses).

Finally the vomiting grew less frequent, her fever at no point spiked and she continued to provide wet nappies. (She had around 38 degrees Celsius rectally every time I checked. Since she always tends to get neurological fevers of that level, it wasn't a helpful symptom).

We tried all week to get a Health Fund nurse to take her blood at home. We had provided the necessary documents and repeatedly stressed the word "urgent'. But to no avail. Various bureaucratic snafus prevented that from happening. 

Today [Wednesday] finally, we've been promised a home blood test tomorrow morning. Fingers crossed.

Friday Update -
The Nurse came! Blood test results were, thank G-d, fine.

Now, switch to a child like Haya, in this condition, living in an institution. 

I'm not sure she would have survived these days. My husband and I and Haya's daytime caregiver, Elvie, all worked hard to keep her hydrated, monitor her vitals and when she was capable, to stand and walk her. 

Which institution here would have been equipped to provide that care? Especially in this Covid era? Large, closed institutions are all short-staffed.

Even Aleh, Israel's foremost provider of institutionalization to children with disabilities, has announced the suspension of all volunteering in at least one of its facilities. Its Jerusalem branch is now advertising posts in absolutely every relevant field of employment.

They need caregivers, social workers, activity coordinators, pharmacist, storeroom workers, aides. Good work conditions for appropriate applicants. Located near the Central Bus Station.

Who is caring for their highly vulnerable residents while those posts await filling and when volunteers - the most inferior type of care at the best of times - are gone?

I shudder to imagine.

Here is some wise advice from UNICEF to countries like ours that lag behind the rest of the developed world of which Israel professes to be a member:

Transforming mental health care and institutions is no easy task, especially with the world’s resources fully stretched in response to the COVID-19 crisis. But this pandemic is not just a health emergency; it's also an opportunity to develop a system of support services that work better for people with disabilities and respect their rights. Now that we’ve caught a glimpse of what it’s like to be locked up, we surely can’t let people with disabilities continue to live in a permanent state of lockdown. [Source]

Let me end with some words from the Aleh people themselves. I actually never imagined that Israel's champions of institutions would publicize a quote like this one below. I believe it speaks for itself. 

This year, due to the restrictions which the Corona virus has brought, the [birthday] celebrations [at ALEH] were much more modest. Elyashiv's parents arrived at the Village to visit him but didn't bring him home as they normally do. "It's sad but happy. I see that Elyashiv misses us. He understands that we have come just to visit and so he is a little sad. But I know that we made the right choice. I know that it's good for him, that the staff at the Village want to do the best for him. The sensitivity, the professionalism, the caring and their responsibility towards him deserve appreciation," relates Elyashiv's mother. [Source: ALEH "חגיגות יום הולדת בצל הקורונה" in Hebrew, translated by me]

Had I written that promotional piece, I would have added: "But would this be the "right choice" for a child who doesn't have disabilities?"

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.

Human beings and Haaretz

The Mahane Yehuda shuk in Jerusalem [Image Source]

I found the following Hebrew article from last weekend's Haaretz very moving. So I translated it (without anyone's permission) to share with my English-language readers. Apparently I wasn't alone in my appreciation because it generated 313 comments (so far) on Haaretz' website, most of them adulatory. 

I've translated a sampling of them which appear below after the article.

It's a Human Being, You Must Help
Alon Idan - published in Haaretz Magazine, June 26, 2020

(The title on the Haaretz website translates to "A Large Man Falls in the Middle of Mahane Yehuda. Here's What Happened Next")

Translated by Frimet Roth

The man simply fell. 

Actually"fell" isn't accurate. Everybody falls. He didn't simply fall. He collapsed. He exploded. He was sprawled on the ground like a sack thrown from a truck. It was horrible. Truly horrible. Everybody stood nearby. 

It happened next to "The Best Falafel in the Land" stall. Every city has a "Best Falafel in the Land". It happened beside "The Falafel of the Levi Brothers" in the Mahane Yehuda shuk which is the best in the-land-called-Jerusalem and he was a large man, tall, broad, impressive, mustachioed, dressed in light brown pants, a light brown buttoned shirt, shiny black shoes and he wore what looked like a luxury watch and in both his hands he held white bags with the shopping he had done at the shuk, and in one bag were all sorts of items that were hard to discern while in the second bag was a large tray of eggs, the old fashioned kind with, I believe, 30 eggs or maybe even 36, in any case it doesn't matter anymore because all the eggs were now broken and had become one huge yellow batter.

And what happened is that there were many metal blue barriers, the sort the police set up in order to close off streets when there's a demo, only this time they closed the entrances to the shuk so it would be possible to measure people's temperature. But there were several barriers that they hadn't used and these were placed on the road, one next to the other, with the edge of one of them, the last in the row, simply protruding toward the sidewalk such that, if by chance a large, broad, impressive, mustachioed man holding two white bags and rushing home, didn't notice it, he was likely to encounter it, slip, fly in the air and then when he would attempt to place his other foot on the sidewalk in order to block his expected fall, he'd discover that there isn't a sidewalk, just a road on which he is now spread out, in pain, shocked, with blood covering the upper part of his face.

And this is what happened afterwards: 

Everyone who was near this large man lying on the ground came over to help. People left their shopping, their bags, their plans - and helped raise him. And afterwards they sat him on a red chair near The-Best-Falafel-in-the-Land. Then they gave him a drink, and then a fellow from the neighboring stall, a too-thin person with a white undershirt, arrived with a litre and a half bottle of water and offered to rinse the large man's flow of blood that leaked from the upper part of his nose. The large man felt uncomfortable and said "It's OK, it's OK, I'm OK". But the thin man with the white shirt told him it was not OK and that he should stop arguing and allow him to rinse the blood. And he stood beside him and rinsed off his blood. 

And in the meantime a rather elderly woman who had two minutes earlier helped the large man stand up from the road whispered something in her daughter's ear. The daughter heard the words and left the place. When the large man looked like somebody who was considering standing up and trying to walk, the woman approached him and said: "What are you doing? Sit, you aren't moving from here, you got a strong knock, rest". And she stood beside him to make sure that that would actually happen.

Simultaneously, another man arrived, with grey hair and glasses, took the large man's hand and asked whether he was alright, and whether he needed anything and how to help. The large man said with a stammer diluted with embarrassment, "I'm OK. Everything's OK." Another man, with a stubble and slicked-back black hair, meandered nervously near the blue barriers and tried to understand what had happened. He too works in the shuk and now he kicks the rebellious barrier that caused the fall as one avenging the large man, and mutters "Look at this, because of this Corona look what's happened to a person. It's not alright."

He was so angry that the only way for him to be rid of the anger was to approach the large man and console him: " It's OK, everything will be OK."

After around ten minutes, when the large man again tried to stand, the too-thin man with the white undershirt simply wouldn't let him. "You might have a concussion, you musn't stand, sit, there's no reason for you to hurry, we'll bring you what you want," he said.

The large man nodded embarrassedly, he knew the too-thin man was right. The other people also remained in their places, waiting, watching with concern, from the corners of their eyes, the large man who sat on the chair.

He finally rose. His left leg was in great pain. He limped. People supported him. They said maybe he should rest a bit more. but this time he insisted on walking. "I'm fine", he said, " Believe me, I'm fine." He wasn't fine. You could see he was in pain. And that woman who had whispered something in her daughter's ear stopped him. "Wait just a moment," she pleaded "just a moment." He didn't understand why but he waited. After several seconds, she said "Here, she's coming." And her daughter indeed came. With a white bag and in it was a new, large tray of eggs. 30 eggs. Maybe 36.

The man didn't want to take them - "There's no need, really no need" - but he had no choice. "Take, take," the woman told him, "It's yours, take." So he took. And then he hobbled in the direction of the street. A large man, dark, mustachioed, with a large, Muslim skullcap on his head. And when somebody approached the woman and told her "Bravo to you, really. Bravo to you," she replied: "What's this Bravo? Bravo for what? It's a human being, you have to help".

END

This story elicited 313 comments!

Here's a sampling:

• Nice to read something a bit positive. A bit of respite from the columns and articles that arouse endless despair
• Thanks for the lovely and touching column. This is the beauty of humanity in the most direct, simple and pure form. I always had the sense that people in Israel are good as individuals and something is lost when we expand the picture and reach politics and other systems on whose bases we live.It's really a good and important question for sociologists of Israeli society. In addition I'd be happy to translate this piece into Chinese, there, in similar situations people flee and don't reach out because of the (real) fear that the person requesting help is pretending and liable to ultimately harm you.
• Excellent writing. Reminds me of Etgar Karet.

And beyond the moving story, written in a really excellent manner, this from a nurse in the pediatric hematology unit at Hadassah hospital:

Thanks Alon. I work in a place where Jews and Arabs lift one another up every day. An hour ago, a photo was posted on our department's Whatsapp of R., a girl from Gaza, blind from a cancer called Retinoblastoma. The NGO "Salimatcom" organized a trip to the zoo for her the "see" the animals. The photo also shows R.'s mother, Sh. who is very attached to her, H., who just got married a week ago and I. The latter are all "Kosher Jews" who work in our department. They went voluntarily. This morning one of our doctors, also a "Kosher Jew", (she's even with a head covering) wrote an email in which she described the efforts of the staff to send one needy family from East Jerusalem, from your united capital, for a special treatment in New Jersey. [Working together are] an Israeli NGO, the patient's health fund, and the social worker who is ours (also with a head covering but not a kosher one - a hijab) and the coordinator of our department - all united in a race against time, against faxes, American regulations and against bureaucracy - in order to fly them there. It's strange to me that compassion is mostly revealed when a child has cancer or a man is bleeding in the shuk and his tray of eggs has broken. One of our staff members once suggested that Palestinian and Israeli politicians should be obligated to volunteer with us for a week, say every six months. All the best.