Freedom of information?

As the second deadline that the Ministry of Welfare set itself nears, we are no closer to learning what we would like to know - namely the names of the institutions operated by the Ministry where victims of Covid-19 resided.

To recap: Some two months ago, I asked that Ministry for Covid-19 statistics regarding residents of institutions for people with disabilities which are supervised by the Ministry [as I wrote here - my request was for a break-down of the number of Covid-19 victims with disabilities according to the individual institutions.

I was given general numbers. But no specific names of institutions involved.

The Ministry told me that I could only learn that by requesting a "segmentation" (their terminology) of the numbers under Israel's Freedom of Information Law.

I duly submitted the form provided on their website and paid for the service.

I was notified that the Ministry has 30 days to respond but also reserves the right to extend that deadline further. Of course, it extended it - by another 30 days. We are now two weeks away from the second deadline.

Coincidentally, I received a survey request - which I was notified is conducted annually - from the Government Unit of Freedom of Information asking me to assess the service I've received from that Unit. 

Needless to say, I graded the Unit ruthlessly and the venting did me some good. Better yet, though, would be some answers to my questions.

Do you think I will ever receive them? (My prediction: Not on your life.)

My other request for information - and its resend - from our Minister of Education, Yoav Galant, has been ignored for a week. It didn't even merit an automated response. 

To recap here as well: I asked him why he attended the grand opening of a new wing at the Aleh Bnei Brak branch. I wondered how he could award his support and blessing to the archaic, maligned solution to care for children with disabilities - institutionalization. 

While we deal with a second lockdown, Haya's hydrotherapy has amazingly continued. The private, local pool is open for rental and here (top of the post) is Haya in her weekly "heaven". 

Incensed by secrecy

Two weeks ago, when our grandchildren had their last pre-school swim in "our" private pool (the local one which we now rent by the hour - I mentioned it here: "Is institutional care really the same as home, love, family?"), we learned that the water contained absolutely no chlorine.

Our son-in-law suspected that when he didn't smell any chlorine. So, after the kids enjoyed their swim, he brought home a sample for a dip stick test (that's the bottle above) which produced the disappointing result.

This week, before I went in with Haya, we brought a jar of those sticks to test the water. Happily, the right color appeared and we had a terrific one hour session.

Here is Haya 'smiling' while floating - that's the tip of her tongue stuck out. We've had no real smiles from Haya for the past twenty years or so.

If only the other information I'm after were as accessible.

First: The Freedom of Information Department at the Ministry of Welfare still hasn't provided me with the data regarding the names of the institutions where the Covid 19 victims with disabilities lived. They were required to provide the information - they call it "segmentation" - within 30 days.. When that milestone is reached - in this case that was this past Thursday - they are entitled to grant themselves an extension which they've already told me they will do. They said the Ministry needs extra time because it's been "swamped" since the pandemic started with requests for information regarding people with disabilities.

Hmm. Wonder why?

Second: I also would like more information from Aleh about the "grand opening" of their new wing at the Bnei Brak branch. Despite the fanfare, attendant dignitaries (including Minister of Education Yoav Galant) and proud announcement on the Aleh Facebook page, no details about this expansion were supplied. I am curious about the following: How many more lucky children will be institutionalized at this wing? What will their ages be? Is the wing already occupied?  I'd like answers in order to ascertain how many steps backward we have regressed with this expansion. I submitted those questions to Aleh via their website's contact page one week ago but have received no response.

Once again, Wonder why?

You can't cherry-pick your scientific data

Institutionalized children as depicted in "The science of
early adversity" (The Lancet) quoted in this post

A recent promotional piece ["Joint Educational Activity with Southern Israel Rehabilitation Centers" | August 31, 2020] on the ALEH website describes how its Negev/Ofakim rehabilitation center

was proud to host a forum of health-related professionals from Ashdod’s Barzilai Medical Center, Ber Sheva’s Soroka Medical Center and Macabbi HMO’s Bayit B’Lev... A joint initiative of the various department directors, the forum aims to hold bi-monthly meetings, provide academic activity and ensure that professionals in health-related fields receive ongoing updates regarding advancements and breakthroughs in matters concerning rehabilitation... Discussion moved on to the current COVID-19 crisis and complications stemming from the more serious incidents of illness. Apart from the immediate need to save lives after exposure to the virus, the group discussed and reviewed the authentic need for rehabilitation after initial recuperation...

In their Hebrew Facebook version of this article (which I am translating now to English) but not in the English version quoted above, they then say

"The forum serves to strengthen the link and cooperation between the departments in the hope that they will progress to joint research. Likewise, core subjects of  rehabilitation are being dealt with, challenging clinical cases are presented along with brainstorming sessions to reach solutions".

For an enterprise that prides itself on partnering with "scientific experts", Aleh does a studious job of ignoring the reams of scientific data, relating to the deficiencies of institutionalization - Aleh's primary activity.

Cherry-picking the scientific data is simply not on. Deleting scientific findings to suit your goal of entrenching and expanding your large, closed institutions is deplorable.

Here are just a few of the reputable articles that Aleh.has chosen to disregard.

Ending institutionalisation of children | The Lancet (Editorial) | Published:July 25, 2015

"Childhood is a time when the seeds of a person's future health and wellbeing are sown. Ideally, it happens within a family setting that provides individualised care in a loving, safe, enriching, and happy environment. Sadly, more than 8 million vulnerable children worldwide do not have access to such care and grow up in large institutions or orphanages. Such environments share conditions that can be detrimental to children..."

Institutionalisation and deinstitutionalisation of children | Niall Boyce, Jane Godsland, Edmund Sonuga-Barke | The Lancet Child & Adolescent Health | Published: June 23, 2020 (Archived)

"...This Lancet Group Commission advocates global reform of the care of separated children through the progressive replacement of institutional provision with safe and nurturing family-based care."

The science of early adversity: is there a role for large institutions in the care of vulnerable children? | The Lancet | Anne E Berens, MSc, Prof Charles A Nelson, PhD | Published:January 28, 2015

"It has been more than 80 years since researchers in child psychiatry first documented developmental delays among children separated from family environments and placed in orphanages or other institutions. Informed by such findings, global conventions, including the 1989 UN Convention on the Rights of the Child, assert a child's right to care within a family-like environment that offers individualised support. Nevertheless, an estimated 8 million children are presently growing up in congregate care institutions..."

Children in Institutional Care: Delayed Development and Resilience | Monographs of the Society for Research in Child Development | Marinus H. van IJzendoorn and others | Published December 21, 2011

"...Children exposed to institutional care often suffer from “structural neglect” which may include minimum physical resources, unfavorable and unstable staffing patterns, and socially emotionally inadequate caregiver‐child interactions."

One very early such report appeared over 100 years ago on January 2, 1915 under the title "Are Institutions for Infants Necessary?", by Henry Dwight Chapin MD [online here]:

In considering the best conditions for the relief of acutely sick infants and for foundlings or abandoned babies, two important factors must always be kept in mind: (1) the unusual susceptibility of the infant to its immediate environment, and (2) its great need of individual care. The best conditions for the infant thus require a home and a mother. The further we get away from these vital necessities of beginning life, the greater will be our failure to get adequate results in trying to help the needy infant. Strange to say, these important conditions have often been overlooked, or, at least, not sufficiently emphasized, by those who are working in this field.

Writing about that century-old article, Berens and Nelson, referred to above, wrote in their January 2015 "The science of early adversity" piece that:

Following the publication of this [1915] article nearly a century ago, scientific studies began to document stunted cognitive, social, and physical development among children placed in institutions during key developmental years. In 1989, the UN Convention on the Rights of the Child (endorsed by nearly all countries, although not in the USA) drew upon scientific findings to generate international normative standards, asserting that “the child, for the full and harmonious development of his other personality, should grow up in a family environment, in an atmosphere of happiness, love, and understanding”.

Why don’t we hear ALEH making statements like these?

So what exactly does Aleh stand for?

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

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

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

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

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

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

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

So Haya gets some food

That's the duplicity that pervades Aleh.

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

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

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

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

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

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

Haya floating unaided in the pool 

I just discovered

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

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

And the following day:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Image Source: Israel National New

Live and learn.

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

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

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

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

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

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

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

Source: Screen Cap

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

We learn from Aleh that afterwards the Minister 

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

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

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

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

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

What doesn't attract press coverage is the travesty of justice that ensued: Remembering my daughter

A version of my op ed below was published in the Jerusalem Post (digital and paper editions) on August 12, 2020 under the title "Why is Ahlam Tamimi still free, 19 years after the Sbarro bombing?"

Longing for my daughter
FRIMET ROTH

Nineteen years ago, our angel Malki was snatched from us in the Sbarro terror bombing.

Some may wonder how a pain can linger, oppress, ache and resist comfort for so long. Well, let me assure you, it can. And it does.

Sometimes, it feels more heart-wrenching to remember her life than it did when she was first murdered. There are so many family experiences and events that she has missed out on.

The bombing that took her life and those of 16 other innocent Jews was uniquely horrific. It has spawned numerous "miracle" legends about lucky people who came eerily close to being in the wrong place at the wrong time. It has even inspired a minor writer to fabricate an entire interview with me which he included in his published memoir as well as in a Los Angeles Times op ed.

It is often the only one of many bloody attacks mentioned when the Second Intifada is revisited. Photographs of the site minutes after the explosion - it is the busiest intersection in Jerusalem's city center - are often reprinted. The sight of baby carriages and strewn body parts is emphasized.

But for some reason what doesn't attract press coverage is the travesty of justice that ensued.

To the bafflement of my husband and me, despite our years of effort to achieve justice for our Malki and the other victims, there’s remarkably little concern about how the mastermind, the main perpetrator of the Sbarro terror attack, is today a free woman.

Jordanian Ahlam Tamimi scouted Jerusalem's streets during the summer of 2001 for a target that would offer the greatest possible number of Orthodox Jewish children. Having traveled with him by public transport from Ramallah, she escorted her "weapon", a suicide bomber called Al Masri, on foot from East Jerusalem to the Sbarro location.

She boasts of how she spoke English to him during their walk in order to pass as tourists. Police were at that very hour combing the city's streets for a terrorist about whom they had been alerted.

After instructing him to wait ten minutes before detonating so that she could escape unharmed, she fled back to Ramallah. There she calmly reported the attack on the nightly Arab language news program where she worked as the on-camera presenter.

In front of cameras, Tamimi has smiled to learn how many children she murdered and expressed dismay that the number wasn't higher. She has urged audiences on Hamas TV and on social media to emulate her deeds. The depths of her evil are apparent to all.

My husband and I are astounded. Why is it that she is still free? Why does this not disturb people more than it appears to?

The US has demanded her extradition from Jordan. It has an extradition treaty with Jordan that was signed and ratified by both countries and has been valid since 1995. Yet Jordan's King Abdullah II - the totalitarian ruler of his kingdom - refuses to accede to that demand.

Nonetheless, the U.S. State Department, the White House and U.S. Congressmen from both sides of the aisle persist in praising "His Majesty" as they are wont to call him. The reverential tone they adopt when addressing him or referring to him is utterly cringe-worthy.

It is impossible to relate this outrage and omit our own leader, Binyamin Netanyahu. While he is now a footnote in the sequence of events, it cannot be overlooked that Tamimi is free in Jordan because he chose to send her there. The several pleas that my husband and I published, circulated and delivered to Netanyahu to remove Tamimi from the list of freed murderers included in the infamous Shalit Deal, were all in vain. He never responded to us at any stage or in any form.

What he did do was tell the press that he sent letters of apology to all victims after the Shalit Deal. His staff personally told me when I called his bureau in the weeks after the Shalit Deal that hundreds of such letters were mailed out.

That is a lie. None were mailed out.

And so the travesty endures. I would note that a faint glimmer of light at the tunnel's end now uplifts us. Several U.S. politicians, global celebrities and major Jewish organizations have joined us in demanding that the U.S. pressure Jordan to extradite Tamimi by withholding the generous annual financial aid it receives from the U.S. A new law empowering such a sanction was passed in December 2019.

Malki's diary

Prior legislation entitles the U.S. Department of Justice to arrest and try suspects for offenses committed against U.S. citizens overseas. Malki was, as I am, a U.S. citizen. That U.S. law specifies that a suspect can and must be pursued by U.S. law enforcement and brought to trial in the United States. Jordan has raised a single objection which American authorities have told us is spurious. But the fact is she is still in Amman with her family and not in a Washington courtroom.

Malki left behind a detailed diary recording the events of the last year of her life ["13-Apr-13: Struggling to keep a daughter's memory alive"]. It makes for a painful read, not to mention an eye-straining one since she wrote it in microscopic script. She clearly wanted to pack in the maximum. 

Each year as her yahrzeit approaches, I read a few more entries and publicize one or two of them.

“February 4, 2001: There was a mortar firing in Netzarim [Gaza Strip] and truly miraculously nobody was hurt. There was a one year old baby lying at the site where it fell! A miracle! A person from Karmei Tzur was was killed on his way home, a father of small children... We had a talk about Kever Rachel ... then communal singing. I cried a bit and it was hard for me to start singing so Shira and I just hugged and that really helped me. At the end we had a talk by Rav Elisha Aviner. He was simply amazing! He encouraged us so much about the situation in Israel.”

I wish Malki were here to encourage me.