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.

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."

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.

בברכה,

פרימט רוט

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: sar@molsa.gov.il) 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.

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.

Boasting about seclusion

Source

This obviously doesn't compare with the death at Aleh Jerusalem in 2000 of a young woman who had been left unsupervised after her meal and aspirated her food [link]. Nevertheless, the isolation and exclusion suffered by the children and young adults warehoused in Aleh institutions is also unforgivable.

Few supporters of Aleh realize that though.

That's evidently why Aleh's PR team saw no harm in publicizing that fact. In a December 26, 2016 release describing a recent train ride organized for several Aleh residents it actually conceded: 

"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." [Source:"First Train Ride for Residents of Aleh Negev-Nahalat Eran"]

You'd think they would hide the fact that these citizens with disabilities never get to travel away from their "prison", never see the surrounding landscape, never ride in public transportation although they are perfectly capable of doing so - as this piece and its accompanying photos make clear. Instead, their isolation is proudly broadcasted.

Aleh has cleverly surrounded its large, closed facilities with other enterprises to camouflage them. Thus out-patient therapy centers operate alongside three of the residential institutions.

This week, Aleh announced - with its predictable fanfare and parade of politicians - the construction of a rehabilitation hospital at its Aleh Negev branch. The project will further entrench the institution that warehouses "more than 200 children" with disabilities. It will further shield Aleh from criticisms about the colossal government funding that it enjoys. It will further stymie the push for new legislation granting "assistance baskets" to people with disabilities who live with their families.

Our quest for a suitable home care arrangement for our daughter Chaya is dragging on. It has involved meeting numerous social workers from personnel agencies. Several of them have remarked that our situation is unique because in Israel most children like Chaya simply do not live with their families! The system makes that option unfeasible because it wants these children warehoused in places like Aleh.

So our fight continues.

Peering behind the walls

Looks can deceive.

The conventional wisdom is that when a large, closed institution for children is clean, aesthetically-designed and decorated, brightly lit and uncluttered and is promoted by the government and by a slick PR agency, that the care within must be excellent.

I hope that the following account will help to dispel that myth.

In May 2000, a small, Jerusalem weekly, Kol Ha'ir ("Voice of the City" - published by Schocken Group who also publish Haaretz), reported an incident that had taken place several days earlier at the Aleh Jerusalem residential facility. It was covered in a two-paragraph article that occupied no more than an eighth of a page.

The story was about the death of an 18 year old girl living at that institution. Instead of paraphrasing it, below is my unofficial translation from the original Hebrew:

Headline: A retarded girl choked to death in the Aleh residential facility
Subhead: The young woman apparently choked from aspiration - inhalation of the contents of her stomach into the lungs. Despite previous incidents of this kind, she was left unsupervised 
The girl, 18, who suffered from mental retardation and motor problems died last weekend at Maon Aleh in the city. The girl choked, apparently.
The girl had received her supper from one of the institution's workers. A doctor at the institution testified that after the girl received the meal, and despite previous incidents of aspiration, she was left unsupervised. "The caregiver came to turn her over and found her totally blue", said the doctor. The girl was taken in serious condition  to Shaarei Zedek [hospital] where she died.

At Aleh's Jerusalem facility
[Image Source: Times of Israel]

The director of the facility, Shlomit Grayevsky, refused to respond to the question of why the institution's staff did not supervise the girl during the meal. "She was in a serious psycho-motor state. The case has been reported as required. Our investigation/checking/inquiries found that everything was proper," she said.

At the time, after reading the report, I made contact with the reporter and asked whether he was following it up. He said that since the girl's parents had opted not to press charges against Aleh, there was nothing to pursue further.

According to the Aleh website, Shlomit Grayevsky, a nurse by profession, remains the director of Aleh Jerusalem to this day.

And just in case anybody is in doubt as to whether Aleh is an institution or just a "rehabilitative village" as its administration call it:

An institution or residential care home for children is defined as a group living arrangement for more than ten children, without parents or surrogate parents, in which care is provided by a much smaller number of paid adult carers... children who live in an institution without a parent for more than three months are ‘institutionalised children’ and the focus of our concern... [Source]

In its 2013 Children with Disabilities report - part of its larger "The State of the World's Children" project [here] - UNICEF made nine key recommendations. They included:

4. End the institutionalization of children with disabilities, starting with a moratorium on new admissions. This should be accompanied by the promotion of and increased support for family-based care and community-based rehabilitation.
5. Support families so they can meet the higher costs of living and lost opportunities to earn income associated with caring for children with disabilities.

I wish the Israeli government, which persists in channeling inordinate funding to Aleh, finally entered the 21st century and adopted these views.