Institutionalization Does Not = Inclusion. Ever.

Here we are at the mid-point of the 13th Jewish Disability Awareness, Acceptance and Inclusion Month (JDAIM). It is described as a "unified effort among Jewish organizations and communities worldwide to raise awareness and foster inclusion of people with disabilities and those who love them."

What better time than now to re-explain to supporters of ADI and Aleh (archived page) and their ilk how they deny people with disabilities their human rights.

For some of us, that may be as obvious as one plus one. Nevertheless, there are those, even some near and dear to me, who still ask "But don't we need those institutions? Aren't there many parents who don't want to raise children with disabilities? Where would those live?"

One of them recently pointed out: 

"Israel has a large ultra-Orthodox sector that eschews abortions. Doesn't that translate into an extremely high number of children with disabilities? And doesn't that mean that the alternatives implemented in other developed countries would not work here?"

In short: No. And here is why.

According to 2017 statistics, the number of children with disabilities in Israel does not surpass those of other Western countries. Some 8.5% or 242,412 of our children suffer from serious disabilities, chronic illness or some handicap that affects their daily functioning. 

An additional 4.5% have mild disabilities that don't have such an effect.

As of December 2019, there were some 373,000 Israelis below the age of 20 with disabilities of all kinds [Source: Government of Israel]. 

Those are not higher than the numbers for other major Western countries. In the United States, the percentage of children aged 3–17 years diagnosed with a developmental disability increased from 16.2% in 2009–2011 to 17.8% in 2015-2017 [Source: Centers for Disease Control]

In Great Britain, 8% of children are classified as disabled.

This is a perfect opportunity to return to the ethos of Lumos, the organization founded by J.K. Rowling to promote the rescue of children from institutions and their return to families and their communities.

"Residential institutions for children have many names around the world, including orphanage, children’s home and baby home. Regardless of name, size or location, institutional care is defined by certain characteristics:

‣ Unrelated children live in the care of paid adults. 

‣ Children are separated from their family and often their community. 

‣ In many cases, they do not have the opportunity to bond with a caregiver.

‣ Institutions run according to workplace routines, instead of responding to individual children’s needs.

Although some institutions are well-resourced with dedicated staff, they cannot replace a family. Eighty years of research has shown the negative impact of institutionalisation on children’s health, development and life chances, as well as a high risk of abuse." [Source: Lumos - Slide 2]

So please don't fall prey to the carefully premeditated tactics of ADI and Aleh. Especially insidious is their use of politically correct catch-words that disguise their true intentions. For instance, this sign brandished outside Aleh Gedera boasts the lie "This is Home, This is Heart".

ADI's latest fundraising campaign asserts that donations will "Enhance Care and Advance Inclusion." And it posts this boast on its Facebook page ad nauseum: 

Celebrate ABILITY, Promote DIVERSITY, Insist on Inclusion | These are our core values, and they are words to live by | Spread them during #JDAIM. Live them year round.

But if you don't believe me, Lumos or the child development experts, perhaps this victim of institutionalization, Tommy Berchenko, will sway you. 

The speech that follows is my translation from the Hebrew original of Tommy who is disabled and is operating a keyboard that vocalizes into speech what he writes:

Hello, I am Tommy. I live in Rosh Haayin and I am an activist for the human rights of people with Disabilities and active on behalf of dignified and appropriate housing for people with disabilities within the community. I have participated in demos against violence/abuse and neglect in institutions.

In my view, institutions do not advance people with Disabilities and they should be shut. I want to live independently in the community in my own home with the things that I love and to be and feel like every young adult despite my need for much assistance.

In 2012 the State of Israel committed to implement the treaty for equal rights for people with Disabilities and promised to advance the right to live within the community on behalf of people like me. [See below for Frimet's explanation of what Tommy means by this.]

Thousands of people with Disabilities live in institutions. The State does not provide the appropriate services in the community and therefore many young people are forced to live there. The institutional frameworks limit one's freedom of choice throughout his life even with the most basic things: what to eat, when to go to sleep, with whom to share a room.

In recent years, more and more incidences of abuse and neglect in institutions have been publicized. (Reported/come to light).

Today I am an activist for the rights of people with Disabilities and for the right to dignified in-community autonomous living. I intend to meet with the Minister of Welfare so that he will carry out the Treaty. The State does not believe that I can live independently. I will prove it!

The time has come for the State of Israel to recognize the right of every person with Disabilities to live in the community like everyone else. Open residential services in the community, shut down (תפרק) the institutions, and give people the personal assistance they need as it committed to do in the Treaty.

I, as a person with Disabilities say: Israel is violating the Treaty. And if it's complex/complicated, there are solutions.

Come speak to us and don't send us to a place where you would not want to live.

[Source: A Facebook video]

What follows is my explanation. 

The agreement Tommy refers to is the United Nations Convention on the Rights of Persons with Disabilities, adopted in 2006 and ratified by Israel in in 2012. Chapter 19 is entitled "Living Independently and Being Included in the Community" and includes this:

Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community", including by ensuring that...
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

A leading advocacy group for Israel's people with disabilities, Bizchut, says about this (my translation from their Hebrew) 

Nevertheless, 17,000 people with disabilities still live in institutions (hostels and remote from the community, wherein their right to autonomy and privacy are violated and where they repeatedly suffer severe neglect.

Why is our government deaf to the cries of people with disabilities like Tommy? Why do institutions retain their stranglehold on our politicians and their constituents?

We can only presume that the continued flourishing of this archaic system benefits them in some way.

One such personage, Israel's President, has still not troubled himself to respond to my letter to him criticizing his visit to, and praise of, ADI. Last week, a month after I wrote to him, his chief of staff responded that the data and information I cited in my letter "will be forwarded to President Rivlin for his consideration."

None of the other politicians to whom I wrote regarding their visits to ADI and Aleh bothered to respond at all.

From bluster to blunder

JK Rowling of Lumos [Image Source]

It was bound to happen eventually. When you churn out the PR bluster ad nauseum, the occasional blunder is unavoidable. 

So when the team at Aleh related how the recent Gazan missile barrage impacted residents of Aleh Negev, they described that institution as "the only birth to death residential facility in the world for those with the most severe special needs" [archived here in case it disappears].

The wording is so egregiously grotesque and crass that I am baffled to see nobody at Aleh has scrambled to delete it. As I type this, it remains posted on their partner's Facebook page.

Aside from the abysmally poor choice of words, the claim that there is no such institution anywhere in the world is also puzzling. There are plenty of such warehouses in impoverished third world countries. Lumos, J.K. Rowling's organization ("Children belong in families, not orphanages") endeavors tirelessly to close them all down. 

True, such warehouses have, for the most part, already been eradicated in the rest of the developed world. But is Aleh truly conceding that its dumping ground for children with disabilities is the last one of its kind extant in the enlightened world? 

If so, then I must pronounce them, this once, truthful to the point of self-indictment.

Aleh 101

Not Aleh

The CEO of Lumos, Georgette Mulheir, announced today that the non-profit, founded by J.K. Rowling in 2005, was the 2015 overall winner of the Civil Society’s Media Charity Awards. This is wonderful news for anybody who cares about children with disabilities. That’s because Lumos is dedicated to eradicating institutionalization of children throughout the world.

Most children who currently live without their families in institutions actually have parents but are not living with them because they are disabled or their families are too impoverished to care for them or both.

Israel is the last bastion of institutionalization of children with disabilities in the developed world with over 700 residents. Because of this country’s anachronistic approach to care of children with disabilities, we are in the same class as countries such as Czech Republic, Bulgaria, Moldova, Serbia, Ukraine and Haiti.

But with this one crucial distinction: in those countries Lumos is operating programmes that will direct them toward de-institutionalization. Israel, on the other hand, fosters institutions for its children with disabilities.

Just look at the sums of the grants that our government lavishes on its largest chain of institutions, Aleh.

The largest of Aleh’s four facilities is plonked square in the middle of the desert, isolated from the children’s families and from any community. This is about as remote as you can get from the current goal for people with disabilities everywhere: inclusion.

But thanks to Aleh’s concerted efforts to inundate potential donors and supporters, most of Israel’s public is utterly clueless as to the injustice and even illegality of Aleh’s existence.

It publishes high profile, mawkish verbiage that disguises the true nature of its operation. For instance, the isolation of Aleh Negev and its residents from family and community becomes:

ALEH Negev, a modern village — built with the money of Diaspora Jews — that gleams like a spaceship in the middle of the southern desert city of Ofakim.
Ofakim is sand-choked and barren, an expanse of flat, brown vistas spilling southward toward the Negev and east all the way to Beersheba. Driving down here in the heat of summer can feel like pulling up to an abandoned planet, a tough, impoverished place where hopes run as dry as the dirt around you. While the border with Gaza is practically within arm’s reach, not much else is. [Source]

And the fact that residents are cut off from their families becomes:

Rachma hasn’t seen her parents in several months, a fact that her caretakers at ALEH Negev-Nahalat Eran, a rehabilitative village for Israeli citizens with severe disabilities, say is sadly mundane... [Source]

With egregious disingenuousness, Aleh’s PR team churn out material that insinuates that the children there are incapable of living with their families or of achieving progress in a community based environment. So we read:

She can’t really walk or talk on her own, but she is alert, sitting up and offering a gurgle of incoherent conversation. Her hands, which curl in the trademark mangle of a child suffering from serious developmental disabilities, can these days wrap themselves around a spoon so she can feed herself. This is progress. [Source]

My daughter Chaya feeding
herself at home

My own daughter, Chaya, is equally impaired and has also learned to wrap her hand around a spoon so can feed herself. But her teacher was her mother who taught her in her own home. There was no need to lock her away in an institution for it to happen.

If the gargantuan sums of money pumped into the Aleh chain of institutions were diverted to help families care for their children in the warmth of a loving home – whether their own or adoptive – those children would benefit enormously and our society would be.

The lion's share of government funding in Israel goes to institutions, according to a major 2014 study by the Joint Distribution Committee [link]. Aleh, the largest institutional residence in Israel, alone receives $24 million annually. Meanwhile there is a serious shortage of services to people with disabilities who live within the community. (Aleh Negev was built at a cost of $42 million. No kidding.)
         .
One last detail: Aleh boasts of a program it runs whereby prisoners are bussed from their cells straight to its desert branch to spend several hours one on one with residents. In order to “boost the staff ratio”, to quote Aleh, several times a week men who have not finished serving time for their crimes (whatever they may be) are permitted to be alone with the most vulnerable of our citizens.

And if they are totally risk-free, then I wonder why Aleh concedes that they are not permitted to work with minors or women.

As far as I can tell, there is no such program in existence anywhere else in the world (and I have searched long and hard). Hmmm. Could there be a good reason for that?

When I questioned the Ministry of Welfare, I received this reply (which I translated from Hebrew):

The ministry of welfare believes in the approach that contact and assistance to people with disabilities turns us into better people. This statement is applicable particularly to people who were convicted of crimes who have an opportunity to do something good. The ministry of welfare takes precautions in that anybody who will come in direct contact with the residents of the facility will not have the potential for harming them. This is what happens in "Aleh Negev" too. 

Hmmm. No mention of its impact on the residents.

I would love to hear your view of this program.