Wednesday, June 20, 2018

Mea culpa

Proteus Mirabilis
I'm still busy wiping the egg off my face. 

For a while, I've been blogging here about my daughter Chaya's neurological fevers and their increasing frequency and severity. 

We even consulted with the neurologist about it last week. But for certainty's sake, we brought her to the pediatrician on Wednesday for a clinical exam.

No other symptoms surfaced, but our thorough prize of a doctor sent us for blood and urine tests. Afterwards, he said, it would be safe to presume she's really got rising neurological fevers. 

On Thursday after the visiting nurse took blood, her fever spiked to 40.2 Celsius. So despite the complication of it, my husband rushed our child to the local health fund clinic where the nurse took urine via a catheter. (The visiting nurse declines to do that with female patients and we were going to postpone it to a more convenient day).

It was immediately clear that she has a urinary tract infection. So within an hour, we had already started her on Cefuroxime, an antibiotic.

Since then, her fever has been steadily dropping. It's back to her usual slightly-elevated readings with an amazing, fluky 36.8 C thrown in last night! I can't remember her ever having a reading that low. 

Her pediatrician surmises that this infection has been simmering (and Chaya silently suffering, of course) for a while.

Today the urine culture results arrived: Proteus mirabilis. It's actually quite a work of art (see above).

As for the moral of this story, I'm sure it's obvious: Never presume anything about our complicated children who can't convey to us what they're feeling

Friday, June 1, 2018

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.

Thursday, May 24, 2018

Two absurd Aleh activities and a swing update

From the swing-maker's website
I haven't abandoned that dream about a special swing for children with disabilities ["The pilot project"] but have hit a bureaucratic snag. I can't even get to first base - approval from the municipality.

I'd been instructed by a representative of the parks department to first submit a written description of the swing I'd like to donate through crowd-sourcing, its cost, the location of my choice, and whether I'd like to dedicate it to somebody specific. I complied and their response was the following (my translation):
Equipment of this sort has never been installed in Jerusalem. We need to examine the technical details of this item of equipment and determine whether the municipality will be able to maintain this type of equipment. Only after examining the above topic and receipt of authorization from the relevant bodies will it be possible to install such a swing and to maintain it. We will be in touch with you in order to survey possible optimal venues for installation of the swing.
Hmmm. Given that two such swings already exist in Hadera and the swing maker's website lists 215 installed sites worldwide not including the two in Israel, this gobbledygook was upsetting, to put it mildly.

I read it as: 
"We're not interested in your offer. It's a nuisance. So please go away and come back - never."
Not giving up yet on this minor dream. We've arranged to meet with the Israeli distributor of this swing on Monday in a local cafe. Hope he will get us beyond this impasse.

On the Aleh front, I was infuriated, as I usually am, by a recent PR piece [here] posted on their website. It seems that a platoon of well-intentioned Hareidi girls studying in Israel on a year program at Beit Yaakov Seminary have been visiting children who live in Aleh. They stand beside their beds at night in order to recite the nightly prayer of Sh'ma Yisrael - Hear O Israel. The PR folks referred to this as an act of "motherly love". They gushed that the girls are "imparting to them the warmth and love of home and belonging". 

Now really. Please. These children may have "complex severe disabilities" (that's Aleh's favored term to describe its residents) but even they can distinguish between strangers visiting briefly to recite a prayer - and a mother's love. They may not have been home for years but even they are aware that the large, cold institution they are warehoused in is not their home.

And while we're on the topic of ill-conceived projects at Aleh, let's segue to Aleh's "Prisoner rehabilitation program". I hadn't seen any mention of it for about a year and had hoped that perhaps they had finally come to their senses and phased it out. Then last week Aleh touted it anew here.

So I feel obliged to reiterate some of what has been learned about this utterly absurd project. See for instance these earlier posts: "Can Aleh get its prisoners story straight?" (December 13, 2016) and
"More things we ought to know about Aleh" (December 2, 2016)

The prisoners - referred to as "detainees" in the recent piece - are permitted one-on-one contact with our most vulnerable citizens. They are free to remove their prison garb and circulate on the grounds of the institutions in civies which obviously makes it that much harder to notice and supervise them.

They are not ex-convicts. All are still serving prison sentences - some have been incarcerated for as long as seven years in a country where sentences for serious crimes are notoriously short. They are forbidden contact with female and minor residents of the institutions and are barred from the hydrotherapy pool.

All of the above information was gleaned from Aleh's own news releases about the program! All of those releases insist that these criminals are perfectly harmless.

I have also consulted independently with the International Corrections and Prison Association (ICPA, a non-governmental organization in Special Consultative Status with the Economic and Social Council of the United Nations) and with the spokesperson for the Israel Prison Services. Both assured me that they know of nowhere else in the world implementing this hair-brained project.

And, needless to say, nowhere in Israel's schools for children without disabilities have any criminals - please let's call a spade a spade - been invited to work with the pupils.

The following is from Aleh's recent piece about the program:
Lieutenant General Ofra Kleiner and senior management staff were recently welcomed to ALEH Negev-Nahalat Eran, setting yet another milestone in the long-running relationship between the village and the Israel Prison Service. Collaboration between the two organizations is mainly expressed via the prisoner rehabilitation program, in which inmates from various southern penal facilities volunteer at ALEH Negev-Nahalat Eran, arriving on a weekly basis to work with residents.
Notice the phrase "mainly expressed". Of course that has me wondering what other activities this "collaboration" entails. That remains to be discovered.

Friday, May 4, 2018

The pilot project


Apart from the swing, we also await the launch of that pilot project to which Chaya has been accepted, organized by a unit of the JDC. It will enable us to provide her with our choice of paramedical therapies at home.

The funding for those services will follow the person with the disabilities rather than the therapists.

This is the model that we are advocating for all in order to facilitate de-institutionalization and the closure of warehouses like those of Aleh. 

For now, Chaya receives one session of hydrotherapy per week. But it remains the the highlight of her life. 

Here she is floating, kicking and obviously reveling in the hydrotherapy pool this week.

Swinging

From vendor's website
I finally received a price estimate for the Liberty Swing (mentioned here) from the Israeli distributor - a staggeringly high price. I included that detail in the proposal I sent yesterday to the Jerusalem Municipality as I was requested to do by the Parks Department. 

I am impatiently awaiting its installation and already envisaging Chaya swinging in it. Probably not advisable since I'm certain this will prove to be a long, drawn out process.

The distributor also informed me that two such swings exist in Hadera and two more have been ordered by other Israeli municipalities. 

But if that sounds impressive, here's what a fellow blogger with a daughter who is disabled wrote me: 
"We have many of these accessible playgrounds here in Los Angeles. I actually have one of the swings in my backyard -- I wish your Chaya could come over and use it."
Me too.

Thursday, May 3, 2018

Aleh is now "educating" our schoolchildren about disabilities

Teacher in wheelchair [Illustrative image via Getty]
Everyone loves to compare Israel with the Western world even though we are situated smack in the center of the Middle East. Usually Israel fares well. But when you juxtapose Israel's attitude to institutions for children with disabilities to that of the West, it's another story. The contrast couldn't be starker or more disheartening.

Recently, someone I know met up with an individual involved with the management of a social welfare organization in a country that will remain anonymous. That person gave me this account:
"I had a conversation recently with a senior executive in an overseas (non-Israeli, in other words) social welfare organization. Let's call her Mary.
Mary and her colleagues had been hosts to an Israeli delegation made up of visiting senior executives of multiple similar groups -- Israeli groups. It was a kind of mutual fact-finding and learning exchange exercise. The Israeli organizations in the visiting delegation represented different parts of Israel's social welfare spectrum. Mary told me she was struck, and others on her team were too, by some comments made by one of the Israelis. Let's call him Yoram. 
Yoram's Israeli organization operates what Mary called large-scale residential care facilities - institutional housing, in simple terms - for Israeli children with special needs.
Mary said this was the kind of solution that isn't found in her country any more. The laws and the practices have changed there and almost everywhere else. 
Mary said to me: "We don't want to see large numbers of special needs children institutionalized and the practice has been done away with."
But Yoram, the Israeli, was speaking to Mary's group using terms like "integration within the community". Mary said this seemed odd coming from an organization that does the very opposite. Mary checked with her translator just to be sure that there wasn't a misunderstanding about what the Israelis do, as opposed to what they say.
But no, there was no translation error, said Mary. Yoram meant what he said. He and the people working in his organization see themselves operating large scale residential facilities, but they believe they are part of the process of integration within the community. Mary said she and her non-Israeli colleagues were left puzzled by this."
Well, that's no revelation to us. Almost every PR release from Aleh ("Israel’s Largest Network of Care for Children with Severe Multiple Disabilities") presents that same disconnect between words and deeds. But it may surprise some to learn that Israeli disability activists and advocacy organizations tolerate - or even embrace - Aleh. In fact, some of them happily partner with it.

Take for example Aleh's project Tikun Olam, much touted in its PR releases. It involves visits to schools throughout the country to enlighten children about people with disabilities. Towards that end, it has partnered [see this page] with several partners that purport to champion the needs of those with disabilities.

One, for instance, Makom Lekulam, boasts on its website:
The Non-profit Organization “A PLACE FOR ALL – promoting social inclusion” (R.A.) is working to promote a society in which people with disabilities will be full partners in the fabric of life, and will be able to exercise their rights and fulfill their potential in the manner of their choosing. The activities of the organization are led by a diverse group of people, including people with disabilities, and thus the organization serves as a model for inclusion and for creating “a place for all”.
The organization’s goal is to bring about a change in the society’s perception of people with disabilities through education and culture, to increase the society’s familiarity with the world of people with disabilities and to generate awareness of the potential of this group to contribute to society and to benefit from it.
We believe that by working in an integrated way with the three sides of the triangle: perceptual change in general society, empowerment of people with disabilitiesand support for their immediate environment (family, educators, etc.) we can create a society with room for growth and for mutual support and responsibility, a place for all.
The Hebrew version of Makom Lekulam's site [this page] - but not the English version - goes on to say this (my translation):
This youth leadership group works within the Ministry of Education with thousands of students by conveying educational programs dealing with accessibility and inclusion in the educational system and unmediated encounters also take place among influential groups in society, for instance, army officers, employers, service providers, community Rabbis, students of education and more. 
As you can see, in describing itself, this organization doesn't mention its partner Aleh. But the program appears to be funded generously, via Aleh. An April 2018 Israel21C.org article ["Israeli 9th-graders learn life lessons from disabled peers"] says
ALEH’s plans to expand Tikkun Olam will bring the annual cost of the program to $1.85 million, to which the Israeli Ministry of Education will contribute $1 million annually for three years. The remaining $850,000 per year must be fundraised...
Aleh publicizes the above details whenever it mentions the program. Where does that kind of money go when it's volunteers that are conducting the sessions? Your guess is as good as mine.

All this deception impacts the public deeply, particularly foreign Jews with deep pockets and big hearts. This was demonstrated to me just a few days ago in a conversation I overheard. I was waiting for the elevator in the beautiful and bustling Shalva center in the Jerusalem suburb of Bayit Vegan. (My granddaughter who is not disabled attends an inclusive kindergarten there; I collect her once a week).

An elderly, vibrant American couple stood nearby chatting when I heard them refer to Aleh as "the other place", along with the name of its chief promoter and fundraiser, Doron Almog. Sadly, these supporters were under the misconception that Aleh is akin to Shalva which is a center providing activities and therapies to children and young adults with disabilities who live at home. 

My eavesdropping highlighted the uphill battle we face in persuading the public that true inclusion cannot abide institutionalization.

Monday, April 23, 2018

How about a shout out to J.K. Rowling?

The tweet is here
J.K. Rowling tweeted the above in response to a tweet that defended antisemitism thus: “Because Judaism is a religion and not a race...”

Her emphatic condemnation of antisemitism comes at a time when the incidence of attacks against Jews both physical and in social media is rising incrementally.

This is a perfect opportunity to praise Rowling for a different cause she champions: the rights of children with disabilities. Through the organization she founded and heads, Lumos, Rowling, promotes the inclusion of that victimized minority into the general community.

Lumos aims to achieve that goal by shutting down large, closed and isolated institutions. It targets precisely the sort of "facilities" that are operated by Aleh in Israel. (Note: Aleh refrains from ever uttering the word "institution". It adheres to the more neutral "facility".)

Rowling's organization helped fund a European initiative described in a 2017 report entitled "Opening up communities, closing down institutions: Harnessing the European Structural and Investment Funds" By Neil Crowther, Gerard Quinn & Alexandra Hillen-Moore November 2017

Here are some of the themes discussed in that paper:
  • Family and community-based living | Regardless of age or disability, all children and adults are able to live in the community with choices equal to those of others, with individualised, accessible support and opportunities to participate fully in community life. All children are able to grow up in a family or family-like environment.
  • Independence | When used with reference to independent living or community-based living 'independence' means that all people with disabilities have the same freedom, choice, dignity and control over their lives as other citizens at home, work and in the community....
  • Institutional care | Institutional care is the provision of care within a residential setting where residents are compelled to live together within an ‘institutional culture’. It segregates residents from the broader community and tends to be characterised by depersonalisation, rigidity of routine, block treatment, isolation and segregation from the wider community....
  • Community-based care | The term ‘community-based care’, refers to the spectrum of services that enable individuals to live in the community and, in the case of children, to grow up in a family or family-like environment. It encompasses mainstream services, such as housing, health care, education, employment, culture and leisure, which are accessible to everyone regardless of the nature of their impairment or the required level of support... In addition, the term includes family-based and family-like care for children, including substitute family care and preventative measures for early intervention and family support 
Those who read Aleh's Yom Ha'atzmaut PR release [here] congratulating itself for promoting inclusion of people with disabilities should not be fooled. No amount of verbiage about inclusion, advocacy of inclusion, praise for the inclusive projects of others, which Dov Hirst did ad nauseum in that op ed will render Aleh an inclusive enterprise. 

Aleh's prattle can never transform its institutions-the very epitome of segregation, isolation and discrimination into inclusive entities.

I would urge parents of children with disabilities who have either abandoned them already or are considering that step to watch the video at this Facebook link. It profiles an abandoned child with severe disabilities who was then adopted by loving, devoted parents - a couple who are afflicted with the very same disabilities as she is!

I also urge you, readers, to suggest to any parents of children with disabilities whom you know in that situation to contact me. Aleh professes to offer the one ideal solution for children with what it terms "profound, complex disabilities". 

My daughter Chaya is severely cognitively impaired, severely physically impaired, non verbal, unable to sit or stand, cortically blind and suffers from refractory epilepsy. Many of the children that reside in Aleh institutions are in a far better condition than that. So, I am in an ideal position to commiserate with and advise those who are overwhelmed by the challenge of raising such a child. These children need their loving parents and siblings as much as, if not more than, abled children do. Take it from me.

Playground swing update: We have learned that (at least) one Liberty Swing already exists in Israel, and was installed in Hadera in about October 2017. We hope to add Jerusalem to the list. We now await details of price. Once we have that, we plan to launch our crowd-source campaign and also submit our request to the municipality for evaluation. 

Can't wait to get Chaya into a Liberty Swing.