Notes from an Aleh visit

One of the cribs I saw at Aleh

I promised more transcribed info from my visit to Aleh Jerusalem ["Making history: After the raid"] and here it is.

Our guide was a senior staff member of Aleh Jerusalem whose position entails a variety of organizational responsibilities.

But on this particular day, what she did a lot of was "blow smoke in our eyes". Before the tour began, while we were congregated in somebody's office, she regaled us with tales of Aleh as champion of the family. I found this ironic, given that Aleh is in the business of taking children away from their families.

"We don't come to replace the family" was one of her memorable lines. "The family is an entire world" was another. "We try hard to keep contact going between residents and families", yet another.

Next, an anecdote: 

"One mother had no relationship with her son. The father was the only legal guardian. After years of efforts by Aleh's social worker, the mother finally came to visit him two years ago and now sees him - he's 21 years old - once every few weeks."

"Each family chooses what it wants and we follow its lead", we heard. Next we were told the tale of a mother who brings home her child's laundry and returns the clothes freshly washed and dried. I wondered how this devotion to her child's clothes could be relevant to her relationship with her child but didn't pursue that. 

"Every educational decision, every medical decision is reached with the involvement of the parents. We have long and meaningful dialogues and joint discussions beforehand."

Afterwards, there was prattle about parties to which parents and siblings are invited: "We want the siblings to see the positives of Aleh and not just to think of it as a hard place. It was just Chanukah, and we had a full party." Now how a "full party" differs from a "partial party" wasn't clarified. I didn't pursue that either. But it was implied that this was a significant party which somehow benefited the residents greatly.

We were then taken to the floors where the residents live. Two of the five floors are devoted to housing the 82 residents who range in age from babies to 40 years old. They were housed three or four to a bedroom and at 12:45 pm we found many in their cribs. Yes, even the young adults are relegated to cribs.

In one room, three of the four were wide awake and one, who was sitting up, smiled warmly when I approached and spoke to him. Why they were in bed - and our guide told us activities would not resume until 4 pm - is anyone's guess. We were told that normally they are put to bed slightly later but that because this was a fast day - it was the 10th of Tevet - the schedule had been slightly altered. Again, the connection between the two is anyone's guess.

I was particularly interested in learning how much para-medical therapy each resident receives. Therapies are a basic need for those with severe disabilities - precisely the population that Aleh invites. (Nearly all of the 82 residents are wheelchair bound, the guide told us). 

Many years ago, my daughter's physiotherapist told me that "therapy is oxygen for these children". And as I have learned from experience, the more severe the disabilities, the more crucial is individualized, intensive input of private therapy sessions.

But extracting information about such therapies proved challenging. Or, rather, impossible.

So, for example, when we visited the beautiful new therapy pool - empty - I asked how many times the residents receive hydrotherapy. The answer: "Once a week; once a fortnight. It's a relatively new pool. Just opened this year. The problem is with the logistics". 

I raised it again a few minutes later and was told: "Once a fortnight - or once a week". 

When I asked about the pool being open in the afternoons for a fee, she told me "Yes, it's open to the public." Apparently no logistics problem in the "for-profit" context.

I then pursued the question of other para-medical therapies, namely physiotherapy, occupational therapy and speech therapy. After getting a general answer, "It depends on the child", I pressed for a range of numbers of therapies or for the number that a typical child would receive. Still stone-walled. "It's very difficult to say. Because it's very dependent on the specific child" was her response, adding, "We very much believe in group therapies. For example, the physiotherapist works with groups. And the occupational therapist as well. If there's a specific child who needs something specific then, yes. Everybody with his own needs. That's why it's so hard to say. With physiotherapy there are those who receive it four times a day". 

I interjected, "Oh, you mean the respiratory physiotherapy?" It had been mentioned earlier. The guide said, "Yes, the respiratory physio." She reiterated: "That's why it varies a lot."

Now for those who are unfamiliar with it, respiratory physiotherapy is primarily concerned with developing, maintaining and restoring an individual's maximum movement and functional ability. In patients with respiratory conditions, physiotherapy includes, but is not limited to, chest physiotherapy or clearance of secretions, and breathing exercises. 

It is by no means the physiotherapy that children with functional disabilities, children unable to walk, stand or sit independently, need in order to progress. It is simply administered to keep the patient breathing.

Realizing that our guide may have been referring only to resident children, I asked about therapies for the young adults. They have a "different program", she said. "They get a combination of work and social activities. The work session is two hours long and its nature depends on the individual capabilities of each resident. They work with paper, clay, etc. It is very much personally adapted." 

As for therapies, "We try to weave them into the daily program, for instance, the walking." 

Well, you have to hand it to our guide: she's a champion waffler.

Coming up: the results of a follow-up phone call to that guide in which I try to elicit specific answers about therapies in Aleh.

Waiting for a wheelchair - and a bizarre partnership

Chaya in her old (and current)
wheelchair

It's been six months since we lodged all the paperwork necessary to convince the Ministry of Health to approve a new, subsidized wheelchair for my daughter Chaya.

In the meantime, she continues to spend most of her waking hours in the ill-suited, uncomfortable wheelchair selected for us by the "seating expert"/physio-theraist in her school ten years ago. 

At our request, our current seating expert (she works at a rehabilitative hospital) who selected the new wheelchair inquired again about the delay. She wrote us that the reply from the Ministry of Health was:

"The treatment requested has been delayed and that they promised to hurry."

Now, even if a wheelchair were delivered to our door tomorrow, it couldn't count as "hurrying". Of course, we are bracing ourselves for a further interminable wait.

And after a two week phone pursuit, we finally landed the physiotherapist from our Kupat Holim (health fund). He showed up last week and put Chaya through his routine of extremity stretches, advising us to do them with her every day. He said he would return in a month since we're only entitled to 12 sessions per year from the Kupah.

When my husband requested that he recommend hydrotherapy for Chaya, he poo-pooed its benefits since, after all, Chaya "doesn't live in water". That's the same response, verbatim, that he gave us a year ago. 

Chaya in the hands of the Kupah
physiotherapist

So once again, my husband patiently educated him about the phenomenal benefits our daughter derives from hydrotherapy. And once again, he agreed to recommend that the Kupah allot her their maximum of 6 sessions.

That's per year! (Note: Chaya can't get any hydro from the Kupah without his recommendation).

Yes, it is somewhat Kafkaesque trying to keep your severely disabled child at home rather than locking her away in an institution. This is particularly true in a country as enamored with the institutionalization of people with disabilities as Israel is.

I was shocked to learn this week that Israel admits representative of Aleh, Israel’s leading chain of large, closed institutions, into our school classrooms to "educate" pupils about disabilities. So, we have our most impressionable population being taught that "inclusion" equals isolating people with disabilities from both families and communities.

Here is what Aleh's website says about that brainwashing program:

“We couldn’t be prouder of this program, which is the fulfillment of a dream for ALEH. Working together with the Ministry of Education, we are educating towards change on a grand scale and seeing immediate results countrywide,” said Avi Wortzman, Director General of ALEH’s rehabilitative village in the Negev and the brains behind the Tikkun Olam program.

The benefit that he raved about was "a noticeable spike in youth-led volunteerism and social activism initiatives."

My apoplexy peaked when I read that

"to increase Tikkun Olam’s geographic reach and professional depth, ALEH partnered with non-profit organizations Makom L’Kulam (“A Place for Everyone”) and Negishut Yisrael (“Access Israel”), both leading voices in the fight for disability rights in Israel." [Source]

Et tu, advocates for the disabled?

I have written to Makom L'Kulam about this bizarre partnership. I will share with you any response I receive from them.