Thursday, July 9, 2020

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 poeple 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 it's 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 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.

Thursday, July 2, 2020

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.

Friday, June 26, 2020

Terrorism through the years

Image Source: Times of Israel

Today the Jewish nation mourns the passing of Yehuda Wachsman, father of Nachshon Wachsman, the soldier who was kidnapped and murdered by Palestinian terrorists in 1994. We were present at the young soldier's funeral.

Much as all Americans alive in 1963 vividly remember where they were when they learned of JFK's assissination, so too do all Israelis remember where they were when they learned of the tragic fate of both Nachshon and Nir Poraz, the soldier killed in the rescue attempt. 

The Wachsmans lost one son to terrorism and also grappled with raising another child, Rephael, who has Downs Syndrome. Arnold and I always felt a kinship with them because of the two burdens we share.

In his last interviews, Yehuda Wachsman's compassion, insight and virtuous character are evident.
יהי זכרו ברוך

On this day, it is appropriate to note the headlines circulating about an imminent prisoner release which this government seems hell-bent on carrying out. The payment it demands - information regarding the fate of the three Israeli citizens who crossed the Gazan border and the return of the bodies of three Israeli soldiers - is reminiscent of the one that propelled Netanyahu toward the 2011 Shalit Deal. That resulted in the deaths of numerous Jews at the hands of releasees who soon resumed their bloody "careers": "ישראל מוכנה לנקוט צעדים חיוביים בעניין עסקה" via Israel Hayom (in Hebrew).

Ahlam Tamimi, the confessed and proud mastermind of the Sbarro bombing of 2001, was among the 1,027 terrorists freed then. One of her sixteen victims was our child, Malki.

Since being freed,and "exiled" (Netanyahu's phraseology) to her homeland, Jordan, she has tirelessly utilized social media and TV platforms to incite her adoring viewers to follow her lead.

Let's remember how effective the court's sentence of 16 consecutive life terms was in her case. It included the judges' warning to future governments never to release Tamimi in the context of future "deals".

I fear yesterday's military court's decision will prove equally irrelevant. It sentenced a Palestinian man to four life terms over a pair of December 2018 terror attacks in which two soldiers and an unborn baby were killed. 

Tamimi's freedom and the protection she enjoys from Jordan's king highlight the impotence of such ruliings in the face of government goals that trivialize our judiciary.

Today, it is left to the US to seek justice and silence this dangerous terrorist, Tamimi. Since three of the Sbarro victims - including our Malki - were US citizens, it has demanded that Jordan abide by the 1995 Extradition Treaty between the two countries so that Tamimi can be tried in a US court. 

Faced with Jordan's long-standing refusal (since 2017) to comply, the US is now threatening to impose sanctions that will withold millions of dollars in annual aid that Jordan stands to enjoy.

We created a petition a week ago ["Demand that Jordan Extradite Celebrity Terrorist of Sbarro Massacre NOW"]. We hope it gets wide support and your help. 

Wednesday, June 10, 2020

Long live long-distance doctoring

Whenever feasible, we handle Haya's ailments by phone or email with our pediatrician and neurologist. 

Because trekking out with her every time - into the wheelchair, out of the wheelchair, into the car, parking, wheeling her to waiting rooms - just wasn't an option.

Now, of course, there's Covid-19 keeping us away from waiting rooms. Suddenly, tackling Haya's care by phone and email is the new normal.

So last week we had our first official telemedicine visit with a doctor. who has never met her. The issue was her acne which has worsened in recent months. While it obviously doesn't worry her, it disturbs me. So I made an appointment for a telemedicine consultation.

Our health fund now offers an app that provides a split screen during the consultation, constantly updates your number in the waiting line and enables you to send the doctor info and questions beforehand. The visit itself was relaxed, focused, efficient and took five minutes. We came away with a digital prescription for acne ointment and an invitation to return in three months. 

So let's hear it for telemedicine!!!! And for tending to the minor health issues of people with disabilities - not only the life threatening ones.

Here is Haya showing the results of just one week's application of anti acne ointment.

Thursday, June 4, 2020

Embraced by the SCN2A community

Source: https://www.scn2a.org/
Last week I participated in a second Zoom session with other parents of children with the SCN2A mutation. As I've mentioned, we learned in August 2019, after 24 years of searching, that the underlying cause of Haya's disabilities is that genetic mutation.

The support group I've joined has nearly 700 member families from around the world. 

That Zoom conversation had six other participants. One from Kansas City, one from Massachusetts, one from England, one from Queensland, Australia, one from Germany. It was so interesting and edifying.

The two American mothers were involved with the formation of the SCN2A support group in 2013. So they had history to share e.g. when there were only a handful of members they concluded that the mutation must be limited to those with Irish/British ancestry, which they all had. 

That was debunked soon afterwards.

Next came the revelation that some children with autism have the mutation. Today, with US insurance companies funding genetic testing of autistic, most of the documented SCN2A children are afflicted with autism rather than Early Onset Encephalopathy Type 11 is which Haya has.
 
I also learned a bit more about the difference between Gain of Function and Loss of Function children. It seems that when epilepsy erupts later than the first few months of life, it's most likely that the child has Loss of Function, in which case meds that are categorized as Sodium Channel Blockers will exacerbate seizures. 

That would explain why Phenytoin, one such drug, only worsened Haya's seizures when we tried it several months ago. A neurologist familiar with SCN2A would have known that, since her epilepsy erupted at 14 months old, Haya is probably a Loss of Function child. 

Consequently, Phenytoin was a bad choice of med. But her neurologist has told us that she has no other SCN2A patients.

I recently acquired a list of Israeli doctors who have written articles related to this gene. (The parent from Germany who Zoom-chatted with us shared it with me.)

I intend to inquire whether any of them have clinical experience with SCN2A patients.

Me ZOOMing with the group
I also found out at that chat that research into gene therapy for this mutation has reached the stage of clinical trials on humans. It goes by the name Antisense Oligonucleotide Therapy

Unfortunately, if proven efficacious, it will only be beneficial to those who have Gain of Function. So Haya is out of the game.

Finally, it was inspirational to connect with other parents of profoundly affected children who have not institutionalized them, who continue raising them with love and devotion despite the challenges involved. 

I still vividly recall a neurologist advising me to institutionalize Haya when she was one year old! That same advice was repeatedly handed me over the years until she aged out of the educational system at age 21.

When will Israel abandon its archaic approach to caring for its most vulnerable children??? When will institutions like Aleh be shuttered???

In the meantime, readers, if any of you knows of an SCN2A child in Israel, please contact me!

Sunday, May 24, 2020

Who really shells out for Aleh?

Aleh says these are its budget sources
With very encouraging Covid-19 stats here in Israel, it is baffling that Aleh remains mum on the status of its ill residents. And infuriating that it hasn't publicly acknowledged the fact that one resident succumbed to the virus in mid April ["On sophistry and silence"].

But it has found the time to circulate its latest financial data from 2019

According to the report's Budget Income Sources pie, donations constitute no more than 8% of its income. Payments received for outpatient rehab treatments are 6% of the total. And the remainder is obtained directly from various government deparments i.e. OUR pockets. 

Those sources are:
  • The Ministry of Education 27%
  • Local Authorities 3%
  • Health Care Funds 8%
  • Social Welfare Ministry47%
  • Other Income 1% - your guess is as good as mine
So, for all those Aleh donors who believe they are crucial to this network of large, closed institutions that isolate people with disabilities from our communities, please note: Your donations are inconsequential to Aleh's success! 

It is government funds, provided by Israeli taxpayers and quietly diverted from children with disabilities who live with their families, that are the mainstay of their business.

Thursday, May 21, 2020

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?