My daughter's rough week and some thoughts from ALEH and UNICEF

Me walking Haya last night. That little
tongue sticking out is how she shows
she's feeling happy

It has been a trying week, Haya-wise.

It began on Shabbat with your garden-variety vomiting - distressing enough. That then progressed to vomiting containing dark brown liquid (i.e. raising suspicions of blood). For a while, she couldn't even hold down water. 

We seriously considered rushing to the ER as we have done in the past with such symptoms. But the thought of hours waiting in a crowded public hospital ER with Covid raging around us scared us off that option. So we grit our teeth - and for my part also cried. And kept on doing so until the symptoms improved somewhat. 

Haya's wonderful pediatrician was assuring throughout this period (and since her stools were blood-free, he eliminated a few concerning diagnoses).

Finally the vomiting grew less frequent, her fever at no point spiked and she continued to provide wet nappies. (She had around 38 degrees Celsius rectally every time I checked. Since she always tends to get neurological fevers of that level, it wasn't a helpful symptom).

We tried all week to get a Health Fund nurse to take her blood at home. We had provided the necessary documents and repeatedly stressed the word "urgent'. But to no avail. Various bureaucratic snafus prevented that from happening. 

Today [Wednesday] finally, we've been promised a home blood test tomorrow morning. Fingers crossed.

Friday Update -
The Nurse came! Blood test results were, thank G-d, fine.

Now, switch to a child like Haya, in this condition, living in an institution. 

I'm not sure she would have survived these days. My husband and I and Haya's daytime caregiver, Elvie, all worked hard to keep her hydrated, monitor her vitals and when she was capable, to stand and walk her. 

Which institution here would have been equipped to provide that care? Especially in this Covid era? Large, closed institutions are all short-staffed.

Even Aleh, Israel's foremost provider of institutionalization to children with disabilities, has announced the suspension of all volunteering in at least one of its facilities. Its Jerusalem branch is now advertising posts in absolutely every relevant field of employment.

They need caregivers, social workers, activity coordinators, pharmacist, storeroom workers, aides. Good work conditions for appropriate applicants. Located near the Central Bus Station.

Who is caring for their highly vulnerable residents while those posts await filling and when volunteers - the most inferior type of care at the best of times - are gone?

I shudder to imagine.

Here is some wise advice from UNICEF to countries like ours that lag behind the rest of the developed world of which Israel professes to be a member:

Transforming mental health care and institutions is no easy task, especially with the world’s resources fully stretched in response to the COVID-19 crisis. But this pandemic is not just a health emergency; it's also an opportunity to develop a system of support services that work better for people with disabilities and respect their rights. Now that we’ve caught a glimpse of what it’s like to be locked up, we surely can’t let people with disabilities continue to live in a permanent state of lockdown. [Source]

Let me end with some words from the Aleh people themselves. I actually never imagined that Israel's champions of institutions would publicize a quote like this one below. I believe it speaks for itself. 

This year, due to the restrictions which the Corona virus has brought, the [birthday] celebrations [at ALEH] were much more modest. Elyashiv's parents arrived at the Village to visit him but didn't bring him home as they normally do. "It's sad but happy. I see that Elyashiv misses us. He understands that we have come just to visit and so he is a little sad. But I know that we made the right choice. I know that it's good for him, that the staff at the Village want to do the best for him. The sensitivity, the professionalism, the caring and their responsibility towards him deserve appreciation," relates Elyashiv's mother. [Source: ALEH "חגיגות יום הולדת בצל הקורונה" in Hebrew, translated by me]

Had I written that promotional piece, I would have added: "But would this be the "right choice" for a child who doesn't have disabilities?"

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.