Sunday, April 30, 2017

Peeling the layers of grief

My daughter Malki Z"L, about eight
weeks before the end of her life
It’s the grief that keeps on taking.

That is, of course, the loss of a child, unique among other losses. Indeed, the murder of our precious fifteen year old daughter, Malki, in 2001 has been inflicting ever new and unexpected pain since we lost her.

First, there was the release of her murderer, Ahlam Tamimi, by the Netanyahu administration in the Shalit Deal of 2011. We are still reeling from that travesty of justice.

Then in 2012, our government freed another Shalit Deal releasee from West Bank "exile", causing a baffling sort of pain. A murderer too, he was Tamimi's cousin/fiance. The pass Israel gave him to cross the border into Jordan directly contravened the terms of the Shalit deal. 

Then why do it? Well, there had been press coverage in previous weeks of the “star crossed lovers” and Israel’s “cruel interference” in their romance. Apparently our leaders could not withstand the media heat.

Word reached us that Israel intended to allow the male Tamimi to enter Jordan. We immediately engaged a lawyer to petition the High Court for an injunction preventing that move. However we were urged by the Prime Minister’s Office and the Justice Department to delay proceeding while they “looked into the matter”. Naively, we acquiesced. The delay enabled Netanyahu’s government to secretly whisk the murderer through the Allenby Bridge checkpoint unimpeded.

On March 14, 2017, the US Department of Justice unsealed its 2013 criminal complaint charging Ahlam Tamimi with conspiring to use a weapon of mass destruction against U. S. nationals outside the United States resulting in death. Both Malki and a second victim – a young, pregnant woman who was her parents’ only child – were US citizens. 

The US request for Tamimi’s extradition has been flatly refused by Jordan despite an extradition treaty signed by those two countries in 1995.

Observing the U.S. and Israel nurturing their warm relationships with Jordan’s King Abdullah while he harbors a mass murderer has added yet another facet to our grief. President Trump recently hosted him at the White House and fell all over himself praising him:
“In King Abdullah, America is blessed with a thoughtful and determined partner… The King has been a leader in calling for a plan to defeat ISIS once and for all. And I’m with you on that. We’re both leaders on that, believe me.”
At the same time, Israel has been exporting gas to Jordan from its Leviathan offshore field since March 2017. According to this source, it will maintain the current volume of gas throughout the 15-year contract with Jordan even if this means gas shortages for Israelis according to a secret letter signed by Mr Netanyahu and Israel’s energy minister. By comparison
“Egypt has reduced the amount of gas it supplies the Jordanians, after it emerged that Egypt needed to reserve gas for its own people.”
A generous contract, to say the least.

Neither leader has raised the Tamimi extradition matter with the Jordanian king.

So you'll forgive us our cynicism when Netanyahu dons expressions of gravitas and compassion, as he undoubtedly will on Yom Hazikaron – Israel’s Remembrance Day, to warn of the existential threat that terrorism poses to the Jewish people.

Here is what he said on Yom Hashoah – Holocaust Remembrance Day some years ago:
“As Prime Minister of Israel, I will never shy from speaking the truth before the world, no matter how uncomfortable it may seem to some. I speak the truth at the United Nations; I speak the truth in Washington DC, the capital of our great friend, the United States, and in other important capitals; And I speak the truth here in Jerusalem, on the grounds of Yad VaShem which are saturated with remembrance. I will continue to speak the truth to the world, but first and foremost I must speak it to my own people. I know that my people is strong enough to hear the truth.”
But Netanyahu did not speak the truth to his people when he told them in 2011 that he had written to every victim of terror's family to explain and apologize for the release of the murderers of their loved ones. The truth was he had written to none of them and never has to this day.

He never responded to our written pleas to him to delete the mass murderer, Ahlam Tamimi, from his list of Palestinian prisoners included in the Shalit Deal.

He never explained the bizarre release of Tamimi’s husband from the West Bank.

And now, he has not explained his silence about Jordan’s refusal to extradite Tamimi to the U.S.

We dream of the day when this hypocrisy will cease; when this mass murderer who widely disseminates her brand of evil and hatred will be returned to prison; and when we will be free to grieve for our Malki without the painful burden of these additional injustices.

Monday, April 24, 2017

Who was Władysław Szlengel?

Image Source
Władysław Szlengel (1914-1943), a victim of the Holocaust, is a poet of whom I first heard this weekend via the Haaretz Book Review section.

Szlengel and his wife fled to Bialystok after the Nazis invaded Poland in 1939. They returned to their home in the Warsaw Ghetto after the Nazi incursion into USSR. Throughout that period, Szlengel published poems and articles in Polish in literary and political journals.

The literary Café Sztuka situated in the Ghetto was the venue for literary evenings and events. There Szlengel excelled in his prophetic poetry and satirical songs and skits which laughed at the Jewish society around him, at the good and the bad therein. He saw himself as "The Writer of the Chronicles of the Drowning".

He was extremely sensitive to all that happened in the world of the Ghetto. Thus, for instance, he wrote a poem about a Jew who had never seen an airplane and heard:
"That you can now get from Poland to Palestine in an airplane... So is the Holy Land so close?"
And most of all, his poems settle accounts with G-d as does the following (my translation into English):
They said: Pray
I prayed
They said - You must fast - I fasted...
They said: Don't steal
I didn't steal!
They said don't eat pig (which I love)
I didn't eat it
They said: don't commit adultery
I restrained myself...
For the L-rd...
Excuse me? I asked, for what?
I said, G-d will help
I said, G-d will deliver
I believed: G-d is with me...
How do You answer me today?
For all my deeds
Do You still expect me
In two days time, as in a will,
while I walk toward the Prussian gas
to say Amen?
Szlengel [Image Source]
In the Ghetto, Szlengel printed and secretly distributed a book of poetry entitled "Which I Read to the Dead" which has just been translated into Hebrew. That title is taken from this piece of his:
"I review and sort the poems I have written to those no longer alive. I once read these poems to living, warm people when I believed with all my heart that all this come to an end, that we will survive, that we will live to see tomorrow... This is our history. These are the poems I read to the dead."
And so we learn - on Holocaust Remembrance Day - of yet another precious, gifted Jewish soul, snuffed out by evil.

Sunday, April 16, 2017

Respite care at Aleh: A mirage?

Respite care for disabled boy [Stock Image]
We parents caring for a child with severe disabilities all suffer from exhaustion and burn out sooner or later. A break from the grueling routine can not only energize us; it can literally rescue us.

Unfortunately, though, that salvation can be elusive. So it was with keen interest that I read the following in a post on Aleh's homepage.
As we toured ALEH, we all noticed the great love and care offered by the staff and volunteers. ALEH provides these special children with a quality of life that would not be possible otherwise, ensuring that their parents receive the support they so desperately need and a break from the 24/7 attention require to care for them appropriately. [Source: Aleh]
This was news to me. I had never heard or read that Aleh offers respite care. All their PR blather about Aleh being a "family" and a "home" appeared to indicate that Aleh only offered one residential option - for life.

But a dear friend of mine who also has a daughter with special-needs requiring round the clock care had been trying to locate a setting offering short term care to enable her and her husband to take a desperately needed vacation. So I told her about Aleh's apparent respite care program and she wrote them the following:
Dear Aleh,
I am the mother of a child with profound disabilities and a chronic illness. I have been caring for her at home for many years.(she's now 22).
I learned from your website that Aleh offers respite for caregivers like me.
What is the time range during which I can leave my child temporarily in your care?
Mrs S [Surname omitted]
My friend received this response soon afterwards:
Dear [S],
Hi! I am so sorry for the delayed response.
Your email went into my junk mail by mistake.
I do not have an answer for you.
I suggest you call the Jerusalem office directly and see if they can help you 02.501.1000

Dov Hirth
Marketing & Development
Office: +972-2-501-1116
USA: 1-866-717-0252
Canada: 888-824-5477
England: 0808-234-3782
ALEH provides over 700 children and young adults with severe disabilities in Israel with high-level medical and rehabilitative care in four residential facilities. ALEH is their home and their family – 24 hours a day, 365 days a year.
This struck us as odd since Mr. Hirth appeared to be in a perfect position to answer my friend's straightforward query. She wrote him again.
Hello Mr. Hirth,
What I am interested to know is whether Aleh can care for my child for a few days to give me and my husband some respite. If that is a service that your facility offers I will definitely phone the Jerusalem office as you suggested.
Thank you.
My friend's second email never received a response.

Clearly, Aleh implies that it offers respite care but does no such thing. And this should surprise nobody. No doubt they figure: why would we offer that service to aid and abet parents who reject institutionalization and keep their children at home? That would be at cross purposes with Aleh's goal.

But mentioning respite care on their website sure enhances Aleh's image.

Wednesday, April 5, 2017

Aleh takes the prize

Renowned musician Itzhak Perlman and friends at the Genesis Prize award
ceremony - June 23, 2017 [Image Source]
Once again, Aleh, Israel's largest chain of warehouse institutions for people with disabilities, has duped just about everyone. By that I mean the prime minister, world renowned violinist Itzhak Perlman, Jewish Agency chairman Natan Sharansky and the Israeli affiliate of United Way Worldwide.

Some rather esteemed "everybodies", I'm sure you'll agree.

Back on June 23, 2016, the annual Genesis Prize was presented in a glittering ceremony to celebrity violinist Itzhak Perlman. Established in 2013, it has been called by Time Magazine the “Jewish Nobel”.

The cash part of the Genesis Prize award is $1 million. This was doubled to $2 million via a contribution from a philanthropist, Roman Abramovich. And a third million would be raised through a matching funds program to be administered by Jewish Funders Network. Perlman himself announced he would apply the Genesis Prize cash to support two new initiatives. About 80% of the $3 million would go to "Breaking Barriers", a competition to select a handful of projects conceived by organizations Israel and North America 
that promote the inclusion of people with disabilities in all aspects of Jewish communal life [Press release, September 12, 2016]
(The remaining 20% would be applied to advanced training for especially talented musicians in Israel.)

The winning Israeli projects were announced on April 2, 2017. Aleh Negev was one of the seventeen and it stuck out like a sore thumb. The winners included the IsraelMuseum, Beit Issie Shapiro, the Community Centers Company (החברה למתנ"סים), Rimon School of Music, the "PleaseTouch" Theatre, Hasadna Conservatory of Jerusalem, the Jordan RiverVillage, Milbat, the Gesher Theatre, the Vertigo Dance Troupe, the Central Library for the Blind and the Orna Porat Theatre for Children and Youth.

According to a spokeswoman for the prize I spoke with at Matan, the Israeli affiliate of United Way, all the winning projects were selected from a list of applicants who seek to culturally enrich people with disabilities. Some of those projects will only be realized the winners once the award money is handed to them. Aleh's winning project is one of those.

The spokeswoman, Tal, told me it will involve Aleh staff taking residents from its institution for babies, children and adults to the theatre, concerts and similar events. The Aleh website boasts that the grant will let it "empower children with disabilities and expose children of all abilities to the arts" and that the funds will go towards taking "residents to museums, musical performances and other cultural events".

Those excursions will give the residents a very rare opportunity to leave that large, closed institution isolated from the general population in the middle of Israel's Negev desert. We know that because, by Aleh's own admission, its residents spend most of their time confined to the institution. In its own words:
For most of us, traveling by train is a routine activity. Not so for the residents of ALEH Negev-Nahalat Eran, who recently went on the first train ride of their lives – a very exciting experience... During the train ride, the residents and staff sang songs and gazed, as if hypnotized, at the amazing Negev landscape passing by their windows... [Aleh website]
What is incomprehensible to me is that an institution which by its very existence promotes and entrenches the anathema of institutionalization and segregation of people with disabilities has been awarded this prize.

Several speakers at the award ceremony emphasized the concept of equal rights for people with disabilities and of their inclusion in the general society. Nobody could possibly argue that warehousing those with disabilities in large institutions, a practice eradicated from most other first world countries (see my January 2016 post: Aleh 101) constitutes inclusion.

“People with disabilities are citizens who deserve equal rights,” Perlman said at Sunday’s ceremony. “If we fight for their rights, expand their horizons and ensure maximum accessibility we will give them the tools to contribute to society – this is the Israel we all want to see for ourselves and our children.”

Hmmm. And locking them in institutions achieves that how?

Bizchut invites us to suggest which services belong in the basket

Knesset chamber [Image Source: Wiki Commons]
There is one organization that Aleh and other warehouses for people with disabilities have not managed to dupe

Without swaying from its course, without compromise, Bizchut (“The Israel Human Rights Center for People with Disabilities”) has doggedly championed equal rights for this population. It is currently lobbying hard for the passage of a law that will grant people with disabilities a personal package of benefits even if they or their families choose for them to live at home amongst the general community. 

Under the present law,  those services are available only if they are institutionalized in places like Aleh.

Bizchut invites people with disabilities, or where appropriate, their family members, to detail the services they would like to see included in that basket of benefits. Your suggestions will be considered by Bizchut in compiling the list it will submit to the Knesset Committee for legislation.

Share your views by filling in one of questionnaires below:
  • Questionnaire for people with disabilities [link]
  • Questionnaire accessible to people with linguistic disabilities [link]
  • Questionnaire for family members of people with disabilities [link]

Sunday, April 2, 2017

Falling victim to the media's "most ethical" behavior

The newly-found birthday card - from 1996
Like many of you, I've been cleaning, sorting and finding the unexpected these days.

Yesterday, a birthday card that the entire family gave our Malki on her 11th birthday turned up. Each of us had written our wishes and mine read:
"My Dearest Mali,
You are a constant source of נחת [Hebrew: pleasure] to us - may you continue in your דרך [Hebrew: way] until מאה ועשרים שנה   years [120 years is the traditional Jewish wish for a full lifespan] in good health... And not to worry about a profession; you seem blessed with the skills of an extremely competent עוזרת [Hebrew: cleaning lady - she always tidied up after me] as well as a very talented finder. [She always located the many items I constantly misplaced]. What more can one wish for? Of course, if those fields don't pan out for you there are always those musical, mathematical and artistic talents to fall back on (though we'd be understandably disappointed in that event). In the meantime, עלי והצליחי [Hebrew: Rise and succeed] and enjoy!
Love, Mom"
She only lived another four and a half years. The pain of longing for her is indescribable.

But there is another pain that I can convey. Its source is the  injustice of her murderer's freedom and continued incitement to kill more Jews. And the sympathy she garners from the mainstream media.

Last week, two Associated Press correspondents interviewed my husband and me at our home. They were interested in our reaction to the United States Department of Justice unsealing of the charges against Ahlam Tamimi, Mali's murderer. (Some background here.)

The pair seemed empathetic and understanding when we noted that we never agree to have our words juxtaposed with hers as some journalists had requested of us in the past. When Associated Press describes its own journalism, it says
"But always and in all media, we insist on the highest standards of integrity and ethical behavior when we gather and deliver the news. That means we abhor inaccuracies, carelessness, bias or distortions. It means we will not knowingly introduce false information into material intended for publication or broadcast; nor will we alter photo or image content." [From the AP website]
Yet several days later we were shocked to see that the AP had done just that. We learned that our interview with them was actually conducted a short time - some hours - after their journalist in Amman had met with Tamimi in her home. The two interviews are posted in a single YouTube video side by side.

Here is a partial transcript of Tamimi's infuriating words:
"The court ruled for not extraditing me to the US. Of course I'm happy, that was my first reaction, because I didn't do anything, and the charges filed against me by the US are not true, I know nothing about them and I never did that. The Jordanian decision was true, because the court in Jordan asked the US to send the whole file of the lawsuit but it didn't do that."
Senior AP employees to whom we complained insisted that we were meant to be forewarned of their intention to publicize our statement beside our child's murderer's. Well, nobody did.

The presentation of a convicted mass murderer's claims on an equal footing with those of the victims' parents is unethical and despicable. To add salt to the wound, the interview - riddled with lies - enables Tamimi to win global sympathy. It stymies current efforts to have her extradited from Jordan and tried in a US court.

Tamimi has over the last 11 years confessed repeatedly with pride and glee to the murders of 15 men, women and children (8 of the latter) to Arab and western journalists. She has detailed precisely what her central role in the massacre entailed. From scouting for and choosing the target for maximum carnage to transporting the 10 kg. bomb to her accomplice and concluding with leading him physically right to the door of the target, the Sbarro pizzeria. She left nobody in any doubt about her guilt.

Yet when speaking to the AP last week, Tamimi flatly denied any guilt in the atrocity she perpetrated. And the AP colluded with her by failing to cite any links to her many confessions. The reader is left to choose between her version of events and ours. As if they were both equally credible!

Please share this post with your friends. You will thereby help to intensify the pressure that is vital to achieving Tamimi's extradition by the Jordanian king. Our meeting here with the people from the US Department of Justice three weeks ago persuaded us that that is the only chance we have of seeing this evil woman brought to justice.

Sunday, March 19, 2017

A plea for justice

My daughter Malki at 14, leaving for an outing
with friends. She was murdered a year later.
I had anticipated that by now we would have great news to share, namely, that the Knesset Ministers Committee for Legislation passed the bill regarding in- community living and personal aid baskets for people with disabilities. 

Instead, Bizchut has reported that, while the committee convened last Tuesday, it deferred the vote on that bill to an unspecified date. But don't despair. As Bizchut explained, this is actually good news. That's because the reason for the postponement was that the ministers want to learn more about the bill and its economic implications before a vote. 

Bizchut believes that its well-received "Make Room" campaign (see the video here), the Neve Ha'irus scandal (click here) and all the emails that were sent to those ministers (see my blog post on that) contributed to this decision. 

In addition, Bizchut is convinced that the ministers were swayed by its new survey results (here) which show that the bill's plan will reduce costs of care for people with disabilities by some 20%.

On another front, however, there is major news to share.

Ever since our prime minister executed the catastrophic Shalit Deal in 2011, my husband and I have suffered the pain of watching one of the convicted terrorists released, our Malki's murderer, Ahlam Tamimi, enjoy the bliss of freedom, marriage and hero worship by her Muslim fans. 

In early 2012, my husband went to Washington to meet with a group of senior Department of Justice officials and to ask for Tamimi to be brought up on charges in the United States. Our daughter was a US citizen, and the Koby Mandell Act requires US authorities in such situations to go after the terrorists wherever they are and bring them to court to face US justice. He brought along a video of me speaking and screened it to attendees at the meeting since I was unable to go. He told me later it had a strong, visible impact.

During the five years that followed, we have met and corresponded with some of those people as well as with FBI agents all of whom expressed determination and eagerness to bring Tamimi to justice. But they never divulged any information about their efforts or results. Those repeated frustrating exchanges were another form of torture for us. We had begun to despair of ever hearing any encouraging news.

Two weeks ago, however, they made contact with us to set up a meeting in Jerusalem for last week. This took place and they finally did some divulging. Big time.

We learned that they have been have been making vigorous efforts in secret to have Tamimi extradited ever since sealed charges were filed with a US court in 2013. The obstacle is clear: Tamimi lives in Jordan where she was born, where most of her family lives and where the vast majority of the population call themselves Palestinians. The government of Jordan does not want to see her extradited. Our understanding is they are not co-operating with DoJ’s efforts. 

Tamimi, a convicted murderer living free in Jordan
is my daughter's killer
At this point, and in view of what we have just learned, we are urging everybody and anybody who might be in a position to sway the two governments - the US and Jordan - to press for Tamimi's extradition. 

Just to remind you: this is the woman who boasted that she deliberately selected her target - the Sbarro pizzeria in the heart of Jerusalem - for maximum damage to women and children; that she then transported the bomb to East Jerusalem by taxi, and then within Jerusalem proceeded on foot with him (the human bomb) to the door of her target. And finally, who carefully instructed her weapon on how and when to detonate. She specified that he wait fifteen minutes to allow her ample time to escape unscathed.

She confessed in court to all of the above.

One year after her conviction, while interviewed in an Israeli prison, Tamimi was recorded smiling when she learned that eight of her sixteen victims had been children - not the three she had presumed. It was a smile of the darkest evil. 

The Jordanian king speaks volumes to western media about his battle against terrorism and desire for justice. But his harboring of this unrepentant mass murderer - and vocal inciter to more terrorism - reflects his true sentiments. 

It is incumbent on every goverment dealing with him to make it clear: there will be no trade or arms agreements without the extradition of Tamimi.

Israel is one such country. Only last month our government announced that it had 
"quietly begun exporting natural gas to Jordan after two Jordanian companies – Arab Potash and Jordan Bromine – were connected to Israel’s national pipeline network. The deliveries to the two companies, which operate plants on the Jordanian side of the Dead Sea, began in January, but all the sides involved opted to keep a low profile because of the political sensitivities in Jordan about doing business with Israel. To keep the Israeli side at arm's length, the gas is technically being sold to the Jordanians by an American company." [Haaretz, March 2, 2017]

The full original of this FBI Most Wanted poster
is here on the FBI website
It appears that Israeli officials are saying Israel's "hands are tied behind its back" in the matter of Tamimi's extradition. 

I think this is nonsense. It only means that our government has no interest in any involvement. It would rather enjoy a smooth and lucrative trade relationship with Jordan unencumbered by the Tamimi issue. It would like us all to forget Netanyahu's catastrophic Shalit Deal. It strives to erase the outrageous travesty of justice and mortal dangers that deal embodied - dangers that have since been realized in the murders committed by terrorists released in the Shalit Deal [see "Palestinians freed in Shalit deal killed 6 Israelis since 2014", Times of Israel, July 20, 2015] 

Untold other attacks have likely been committed by terrorists whom Tamimi herself incited to murder in her social media exhortations to her Muslim fans.

While the challenge is overwhelming, we intend to fight for Tamimi's extradition to the US until that goal is reached. 

Please help us any way you can.

Saturday, March 11, 2017

My de-institutionalization request: a postscript

The Knesset, Israel's parliament
I wanted to add something to "De-institutionalization of people with disabilities: here's something we can do", my blog post from March 8.

I have copied below the personal version of the letter sent by my husband and me - the one that Bizchut is urging us all to send to the Cabinet Ministers who are members of the the Legislative Committee.

The draft bullet-points of that letter and the email addresses of the relevant Ministers appear in my previous post.

לכבוד השר
הצעת החוק לדיון בוועדת שרים לענייני חקיקה

לבת שלנו, אלישבע רוט, בת 21, יש פיגור  פיזי וקוגניטיבי  חמור ביותר. היא גם סובלת מאפילפסיה בלתי נשלטת [intractible epilepsy]. היא רתומה לכסא גלגלים ולא מדברת.

אלישבע חיה אתנו וזקוקה לטיפול סביב השעון.

מאוד חשובים לה גם טיפולים פרא רפואיים בכדי למנוע נסיגה נוספת בתיפקודה.

בהתחלת שנת הלימודים הנוכחית נותרה אלישבע ללא שום מסגרת מתאימה אחרי 14 שנה במערכת משרד החינוך. ביקרנו בשלש המסגרות היומיות בעירינו שהמליצה עליהם העובדת הסוציאלית  בבית ספרה. כולם עשו עלינו רושם מאוד שלילי.

אין אופציות אחרות בשביל אלישבע חוץ ממוסד סגור כמו "עלה". את ה"פתרון" הזה אנחנו שוללים נמרצות.

וכך, מכיוון שאנו אוהבים את אלישבע ומסרבים לסלק אותה מביתנו, נשארת הבת שלנו בלי שירות מספק.

הפתרון הוא בצורת פרק דיור בקהילה וסיוע אישי בחוק שוויון זכויות לאנשים עם מוגבלות.

הצעת החוק תעלה לדיון בוועדת שרים לענייני חקיקה בשבוע הבא, ואנו כהורים מבקשים ממך לתמוך בה ולא לסתום את הגולל על הסיכוי של הילדה שלנו לקבל שירות מכבד ומותאם לצרכים שלה.

בכבוד רב
פרימט וארנולד רוט

[Phone number goes here]

Please help us inundate those politicians with this exhortation to pass the bill guaranteeing freedom of choice of residence to people with disabilities.

Thursday, March 9, 2017

De-institutionalization of people with disabilities: here's something we can do

Israeli cabinet meeting, January 2017 [Representative Image]
Israel's Ministerial Committee on Legislation will vote next week on a bill granting people with disabilities the right to choose their place of residence. The bill also ensures they will receive all requisite supportive services at the home of their choice.

The enactment of this bill is long overdue and is a basic element of equal rights for citizens with disabilities.

In the current situation, people with disabilities only enjoy those services and therapies if they - or their guardians - agree to their being locked up in an institution or hostel.

Just imagine how you would feel if our government dictated where - in fact in which specific building - you are permitted to live? And then imagine that you forfeit all of your government entitlements if you chose to disregard that order.

Doesn't sound remotely democratic, does it?

Well, that is the reality for thousands of people with disabilities, including our daughter Chaya whom we have chosen to keep at home with us and near to the rest of her family. As a result of our choice, Chaya does not receive the government funds for therapies and equipment that a child like her residing in an institution receives. (Those funds are channeled to those institutions; whether or not they actually provide those therapies is another matter.)

If your child is in this situation or if, as a professional, you know such children, Bizchut urges you to write to any or all of the Ministers on that committee. Their names and email addresses are listed below as is an outline of the sort of letter that Bizchut believes would be effective. I have translated that to English. Just fill in the details about the child you know and send it off in the language you prefer.

Draft Letter:

1. שם ההורה ושם הילד - Names of the child and his/her parents
2. המוגבלות של הילד - Description of the child's disabilities
3. הצורך בשירותים של דיור ושירותים תומכי דיור עבור הילד - The child's need for living arrangements and supportive services
4. מה שקיים כיום לא מספק, ולכן הבן/בת שלי לא מקבלים שירות מספק - The current government assistance falls short of providing this child with the necessary services
5. הדאגה לעתיד הילד והצורך בפתרון - Concern for the child's future and the need for a solution
6. הפתרון הוא בצורת פרק דיור בקהילה  וסיוע אישי בחוק שוויון זכויות לאנשים עם מוגבלות - The solution is in the section about in-community living of the Equal Rights for Persons with Disabilities Law, 5758-1998
7. הצעת החוק תעלה לדיון בוועדת שרים לענייני חקיקה בשבוע הבא, ואני כהורה מבקש ממך מאוד לתמוך בה ולא לסתום את הגולל על הסיכוי של הילד שלי לקבל שירות מכבד ומותאם לצרכים שלו - The bill will be discussed in the Ministerial Committee for Legislative Matters next week and I, as a parent, implore you to support it and not to end my child's chances to receive services that are honorable and appropriate for his/her needs.
האימיילים של השרים בוועדת שרים לחקיקה
Email addresses of relevant Ministers

חיים כץ, רווחה -
יעקב ליצמן, בריאות -
משה כחלון, אוצר -
יואב גלנט, שיכון -
איילת שקד, משפטים -
יריב לוין - תיירות -
דוד אזולאי, שירותי דת -
גילה גמליאל, שוויון חברתי -
מירי רגב, תרבות וספורט -
זאב אלקין, הגנת הסביבה -
יובל שטייניץ, תשתיות -
סופה לנדבר, עליה וקליטה -

Tuesday, March 7, 2017

On the road to de-institutionalization, some winners, some losers

Marlee Matlin [Image Source]
A couple of weeks ago, the Ruderman Foundation bestowed an award on Oscar-winning actress, Marlee Matlin ["Oscar-winning deaf actress, who is Jewish, ‘has broken down barriers and changed perceptions worldwide’", Times of Israel, February 23, 2017]. Matlin, who is both Jewish and deaf, will receive the fourth annual Morton E. Ruderman Award in Inclusion. She intends to visit Israel in June 2017 to receive the award which comes with a $100,000 grant.

I would love to use that opportunity to educate Matlin about the sort of inclusion that the Ruderman Foundation promotes. Because, while its staff members do write and speak much about true inclusion and accessibility for people with disabilities, the Foundation has also evidently developed a close relationship with Aleh, the leading chain of large, closed institutions for people with disabilities in Israel.

That "marriage" is akin to the tobacco industry hitching up with the AMA, or Coca Cola with an anti-obesity organization.

Oops. That last marriage actually took place [see Popular Science, December 2, 2015] But when its existence - and the influence exerted by Coca Cola on the organization - were revealed by the New York Times, the partners promptly "divorced":
The Global Energy Balance Network (GEBN), an organization founded to help combat obesity, will be disbanding after months of criticism following a New York Times report back in August that revealed Coca-Cola had funded the organization. The group wiped its website clean, leaving a post that said it was discontinuing operations "due to resource limitations".
Image Source
True, that setback has not deterred soft drink giants Coca Cola and Pepsi from continuing to lobby and invest huge sums of money to distract the public and the government from the dangers of soft drinks. (See "Coca-Cola and Pepsi have been quietly lobbying against anti-obesity measures in the US", The Journal, October 15, 2016)

Nevertheless, the hasty disbanding of that organization, GEBN, contrasts with Ruderman Foundation’s attitude towards Aleh.

A year ago, we alerted the Ruderman Foundation -- via an article I wrote for this blog ["Israel is in love with institutions", April 4, 2016], in a May 2016 Algemeiner op ed, and in my husband's phone conversation with its spokesperson -- to the hypocrisy in its "partnership" with a chain of institutions for people with disabilities.

The Foundation says on its website that it is committed to the following:
"Guided by our Jewish values, we advocate for and advance the inclusion of people with disabilities throughout our society; foster a more nuanced understanding of the American Jewish community among Israeli leaders; and model the practice of strategic philanthropy worldwide..."
Aleh's warehousing of infants, children and adults with disabilities is nothing short of the antithesis of that purported goal.

The Ruderman Foundation did not respond to us in any substantive way.

To this day, you can still find a blog post on its website ["Positive Impact"] extolling the virtues of Aleh Negev and its so-called prisoner rehabilitation program. It's a post that dates back to October 2013. (Here's some of my December 2016 criticism of that program: "Can Aleh get its prisoners story straight?")

You can also still find on Aleh's Facebook page a post from 2015 boasting of its partnership with the Ruderman Foundation. The Foundation doesn't seem disturbed by Aleh's exploitation of its name to erase the taint of exclusion and isolation.

Today, as I was typing this post, Bizchut began circulating a stellar video clip ("Make room") promoting inclusion that it produced with sponsorship from the Ruderman Foundation. (In Hebrew and with English-language subtitles.)

Bizchut urged us, along with all its supporters, to help circulate this powerful work (which has gotten more than 100,000 views in the past few days). So despite my above diatribe against Ruderman, I urge you all to watch it and share it widely.

Thursday, February 23, 2017

Aleh: Blowing smoke

Not a parody: a genuine smoking ad [Image Source]
Aleh is "promoting" inclusion.

Ouch. Just typing that sentence felt painful and infuriating. Its irony is reminiscent of the cigarette advertisements that were common during the early 1900's. Some of them featured doctors urging the public to smoke specific cigarette brands to benefit their health. My own mother, usually tense, was encouraged in 1959 by her doctor to continue smoking during her pregnancy with my brother "to calm herself".

In that same vein, we now have Aleh, champions of the institutionalization of people with disabilities, launching a photographic exhibition last week [here] with the claim that it "highlights the importance of acceptance and inclusion".

At the risk of sounding tiresome and repetitive, I will clarify:
Institutions like Aleh's  - the largest such chain in Israel - are the epitome of EX-clusion and rejection. Hiring a professional photographer to capture artistic shots of  residents of those institutions doesn't change that incontrovertible fact. 
Last week a protest organized by Bizchut was held outside Neve Ha'irus, the institution housing 130 that has been accused of scandalous abuses and violations of human rights [see my earlier posts]. Not one news source reported the event. That omission speaks volumes about the state of de-institutionalization in Israel.

Prior to the protest demonstration, one news station did send an undercover journalist to Neve Ha'irus as a job applicant for a position as caregiver. Despite having no experience in the field, he was hired.

He learned disturbing facts about the treatment of the residents both from observation and from fellow employees that included:
  • an intolerable stench in some of the buildings
  • brass beds with misfitting mattresses forcing residents to sleep curled up
  • closets containing nice, new clothes that are removed, according to staff, only when a resident receives visitors
  • toilets without seats
  • bathrooms without soap because, as the administrator explained, "there are some who would put it in their mouth". So nobody sees to it that their hands are cleaned either before or after meals
  • dirty sinks and toilets
  • common toothbrushes for all
  • parents are never admitted to the buildings; only visit their children outdoors.
  • much "dead time"; one resident tells the reporter he'd "like to work"  
  • complaining staff members are penalized via their work schedules
Perhaps the most baffling finding is that the Ministry of Welfare hands Neve Ha'irus 10,000 shekels per resident every month and is responsible for "supervising" its operation.

Bizchut is demanding the immediate closure of this institution until an independent supervisory body is established to replace the clearly incompetent Ministry of Welfare.

Hebrew speakers can listen to the report via YouTube.

Back to Aleh:

All the dangers of institutionalization apply there too. The PR release accompanying the photo exhibition states:
"A quick glance at the photographs would not reveal the difference between these children and others, and that is exactly the point that the exhibition is trying to make: individuals with disabilities have an equal place in society and should be accepted just like anyone else."

They most certainly should! Acceptance means enabling them to live in the community and with either their own or other families; NOT warehoused within large closed institutions.

Here is our sweet Chaya at home (on the right) in an engaging pose I caught by chance.

Thursday, February 9, 2017

Joining the struggle against institutionalization

Caption reads: "There were buildings where the stench was simply
unbearable..." Screen grab from the Israel
Channel 2 TV expose of serious deficiencies at
Neve Ha'irus (full video online here)
One couple on the Bizchut forum with whom I've communicated (see "My contribution to Bizchut's forum on the Neve Ha'irus scandal" and "The evils of institutionalization are now on the front burner" and "One small step for people with disabilities - Help make it a giant leap") is now compiling a list of Israeli parents whose children with disabilities live at home.

The goal is to gain some traction for our fight to win "personal assistance baskets" (in Hebrew: סל סיוע אישי). That is the only way to right the injustice being perpetrated by our government: it spends over $3,500 (13,374 shekels) per month on, for instance, every child in the Aleh institutions.

Children with disabilities living with their families receive a tiny fraction of that via National Insurance.

If you are such a family and resent the way we are unfairly saving the government millions of shekels in outlays each year at the expense of our children's welfare, please add your name to this list.

If you like, submit your details to me via this form [click] and I will pass them along to the parent who is compiling the list.

Also, anybody interested in demonstrating on behalf of the closure of Neve Ha'irus (see my post "Not a Dickensian tale" for background), Bizchut is organizing a protest outside that institution for people with disabilities today.

Here is what Naama Lerner of Bizchut wrote on the Bizchut forum (translated to English by me):
On Thursday, 09/02, we will demonstrate opposite the institution, Neve Ha'irus. Neve Hairus is a paradigm for all similar institutions in Israel. And we will tell the State, "Shut down all these institutions. incorporate the concept of in-community living in the law of equality and appoint an ombudsman to ensure that cases like this do not recur." 
With regard to our personal initiative, though, Naama wrote:
"Leave it to us and the Knesset members, Uri Maklav and Ilan Gilon. In order for the new law regarding fully funded  in-community living and personal assistance baskets to progress it must pass a vote in the Knesset committee for legislation. The cabinet ministers on that committee are opposed to it because of its high cost and primarily because it involves significant structural changes to the Ministry of Welfare. We are embarking on a major campaign to soften those committee members and to convince them to pass the bill. It will be a long haul. Sadly." 
Later she added:
"It will be a slow struggle, a sisyphian one, and there is no alternative but to conduct it will lots of patience and teeth-gritting."

Saturday, February 4, 2017

My contribution to Bizchut's forum on the Neve Ha'irus scandal

"The carer didn't even notice that she (my daughter) had broken a tooth".
Video-still from an undercover investigation of Neve Ha'irus that appeared
in recent days on an Israeli Channel 2 news program [link]
Here is a comment I sent in Hebrew to the group of activists that has been discussing the issue of sub-standard institutions for people with disabilities and in particular Neve Ha'irus about which I wrote earlier.

(See my two previous posts: "The evils of institutionalization are now on the front burner" and "Not a Dickensian tale".)

The English translation appears below it, and the Hebrew right after it. I'll post the responses I receive as soon as I can translate them.
Hello All, 
Thus far, I haven't read a comment that represents those parents who choose to care for their children themselves at home. 
The government expends gargantuan sums on the care of people with disabilities only if they live in institutions. 
But if they live with their families the government doesn't subsidize their care other than with the minimal National Insurance stipend. 
The result is that we parents who are sacrificing our energies, our money and, often our health, are saving the government millions of shekels. 
For instance, for every child residing in Israel's largest chain of institutions, Aleh, over 16,000 shekels flow monthly of which 83% is taxpayers' money! 
So when we focus on the problem of these institutions let's also include the plight of parent-caregivers and our fight for a personal- basket-of-services for our children. 
Best,Frimet Roth
שלום כולם,

עד כה לא קראתי דעה שמייצגת את אותם הורים שבחרו לטפל בילדיהם בעצמם בחיק המשפחה.

הממשלה מעבירה הון תועפות עבור טיפולם של אנשים עם מוגבלויות אך ורק אם הם גרים במוסדות.אבל אם  הם חיים בבתיהם הממשלה אינה משתתפת במימון טיפולם - חוץ מהסכום המיזערי של  תשלומי ביטוח לאומי.

התוצאה היא שאנחנו, הורים שמוסרים את כוחותינו, כספינו ולעיתים קרובות את בריאותינו , חוסכים למממשלה מליוני שקלים. לדוגמא, עבור כל ילד ברשת הכי גדולה בארץ, "עלה", זורמים יותר מ-16,000 שקלים לחודש ש-83% הם מדמי משלמי מיסים!

אז כשמתמקדים בבעיית המוסדות האלה הבה נכלול גם את המצוקה של הורים-מטפלים ואת מאבקנו עבור סל סיוע לילדינו.


פרימט רוט

Thursday, February 2, 2017

The evils of institutionalization are now on the front burner

From Bizchut's Hebrew-language Facebook page (there is an
English-language version as well). The photo shows an ill-fitting mattress
on one of the Neve Ha'irus residents' beds
If you are not already familiar with what is happening at Neve Ha'irus, see my December 24, 2016 background post: "Not a Dickensian tale".

Now this quote:
The 130 residents of Neve Ha'irus are exposed to contagious skin diseases that are not being treated properly. Bizchut has received difficult-to-view photos depicting shocking neglect. According to staff members, residents suffering from this contagious illness are "treated" with nothing but hand cream.
This is just another instance of how Neve Ha'irus is a gaping wound in the heart of Israeli society which has chosen to conceal these people and ignore their plight. We call for the immediate appointment of an independent investigative body in order to rescue these residents. In addition, they must be transferred to respectable residences. This wound has to be treated!
Would you like to make a difference?
Contact Knesset member, Haim Katz, Minister of Employment and Welfare [in the Israeli government] (email: and demand that he set up an independent emergency committee to investigate the operation of Neve Ha'irus.
The post above, which appeared this week in Hebrew on the Facebook page of Bizchut, the Israel Human Rights Center for People with Disabilities, has sparked a fiery exchange of views from readers. 

Several, who were enraged by the post and by accompanying photographs of Neve Ha'irus - one of the dining room and of a resident’s hand - conceded that they are employees of the institution. (Note: the comments of Neve Ha'irus staff members were posted without any Hebrew punctuation.) They asserted that their positions there grant them inside and irrefutable knowledge of the situation. Here is one excerpt:
“The warmth and love we give our work is holy work We the caregivers work every day of the year unlike you who sit in some office Sit there frustrated Stop harming Be adult people and leave Neve Hairus in peace because Neve Hairus is #1…” 
Another employee wrote:
“I don’t recall that dining rooms must be decorated and colorful… where is such a thing written is there a regulation that a dining room must be decorated with every color of the rainbow???????? What’s important is that the food be well-cooked and hot and fresh and varied and suited to each and every resident and that’s what happens here”
And regarding the photo of a resident’s scabies-afflicted hand, one employee wrote:
“This resident receives treatment in clinics We also have dryness on our hands at times or on our entire bodies and we go to a dermatologist and our residents go out for treatment as well…”
As one ex-employee pointed out, this is just what you would expect to hear from a frightened employee desperate to keep his job.

Bizchut responded to these comments stating, among other things:
“Is it possible that the entire staff at Neve Ha'irus is bad? Is this the reason that the facility is operating as it is? The answer is “No”.
We had the pleasure of meeting some of the employees during our visit and we maintain contact with some of them. They are warm people with values who truly desire to do good and to give the residents quality of life.
They do the best they can and the problem does not lie with them but with the structure of life in an institution. It is a closed place, surrounded by a fence. At its entrance stands a locked gate and even parents of the residents arriving to visit may not walk around freely nor can they visit the building where their loved ones live.”
Bizchut’s recent postings and emails about this institution have elicited critical responses from its supporters as well. Their gripes relate to the specifics of how to tackle this blight – not whether it is one at all.

Bizchut employees, parents of children with disabilities and other involved citizens have joined the discourse. Needless to say, it is uplifting to finally see institutionalization in Israel and its evils receiving the attention they warrant.

I’ll be translating those further exchanges as soon as I find the time.

Monday, January 23, 2017

A bad idea dressed up as good news

The caption in the original article [here] reads:
"The cornerstone-laying ceremony for ALEH’s forthcoming
Neuro-Orthopedic Rehabilitation Hospital in Israel’s Negev region"
Much hype has been circulated recently by Aleh’s tireless PR team about the groundbreaking ceremony it held on January 3, 2017 for a neuro orthopedic rehabilitation hospital. It will be situated in Israel’s south, a region notoriously lacking in medical facilities. 

Everybody is, justifiably, elated that the long-suffering residents there will finally enjoy the services they deserve. Here is some of the coverage it received:
“ALEH Negev-Nahalat Eran is a flagship project in JNF’s major plan for the development of the Negev. Through our fundraising efforts, JNF supports and enhances this remarkable village and will now continue to support the planned Rehabilitation Hospital at ALEH,” said Eric Michaelson, JNF’s chief Israel officer. “The village is attracting doctors, caregivers, teachers and others, stimulating the local economy and with the new hospital will continue doing so,” he said. [JNS, January 5, 2017]

But there is a thorn in this good news. The fact that such an essential medical project is being undertaken by Aleh, Israel’s largest chain of warehouse institutions for children with disabilities, and at its Ofakim-based Negev residential ("village") facility, should raise red flags.

Israel’s government remains alone among developed countries throughout the world in its persistent and lavish funding of such large, closed institutions. The $24 million that it grants to Aleh annually leaves precious little cash for families that love their children with disabilities so much that they want to keep them at home.

The policy that Israel has adopted – promoting, supporting, funding and granting awards to institutions for people with disabilities – translates into the rejection of other options of care. Admittedly, most people who stand up and tout care at home and in the community for people with severe disabilities are shouted down in Israel. “How can you suggest that parents keep such children at home?” “Do you have any idea what an enormous challenge that is?” “Walk in the shoes of such parents for a day before you spout such nonsense!”

The thing is that my husband and I have worn those shoes continuously for twenty-one years. We are painfully aware of what the care-at-home option entails. We know other Israelis like us in this country who have chosen the same path. We also know that some parents who have deposited their children in institutions like Aleh probably would have reconsidered had they been afforded greater government assistance.

Instead, our closed institutions devour the lion’s share of Israel’s cash for children and adults with disabilities. As Aleh’s promotional material (see this Facebook link, and a November 2016 article entitled "ALEH: Tikkun Olam in Action") boasts, "parents pay nothing" toward the care of their institutionalized children!

Aside from the monthly stipend we receive from Bituach Leumi, the government of Israel's National Insurance Institute – which covers mobility, medicines and basic medical needs - we receive no financial assistance toward caring for our child at home. According to the Aleh website, the care of children at Aleh costs $4,300 per month per child, of which 83% is government money. This policy effectively penalizes citizens who choose not to hand their children over to the care of strangers.

The damage that institutions cause to their residents is no secret. Reams of medical research results have been published lambasting that care solution. So why are our decision makers ignoring them?

Enabling Aleh’s closed institution to be the conduit and venue for essential medical services is a bad idea. Developing the depressed economy of Israel’s periphery on the backs of our most vulnerable citizens is a bad idea. Entrenching the enterprise of institutionalization at the cost of in-community and family life is a bad idea.

My husband and I are planning to produce a video clip demonstrating how we live with our daughter Chaya at home. We intend to film her and other people with profound disabilities who, in Israel, would normally not enjoy the love and warmth of family life. If you too have chosen this option for your child or know somebody who has and are interested in participating in this project, please contact us.