Dismal day at the doctor and the dietician

We had a rendezvous with Haya's neurologist and dietician this week. 

My husband Arnold attended in person and I was on video Whatsapp (Haya did not attend). Fortunately it was succinct but not too heavy on the positive news. 

Here are its conclusions:

• Both agreed there will be no changes to the Ketogenic Diet or the drug regimen for the time being. We would ultimately like to reduce the meds but since Haya was hit with status epilepticus the last time we tried that, it's not a step the doctor wants to take again yet. 
• Both were also satisfied with the halt in Haya's weight gain although she remains 2-3 kilos heavier than she was when we began the diet. But she was gaunt then.
• The neurologist predicted, pretty definitively, that there will be no cognitive improvements down the road for Haya regardless of any changes we make in her treatment. Ever.
• The dietician emphasized that Haya's seizure control would probably improve if I readjusted her meal times. The goal should be to provide her with a longer night-time fasting stretch. Ten to twelve hours would be optimal. I'm aiming for that but not nearly there. Got to get my act together. 
• The neurologist. thought Haya's frequent right-leg twitching is probably not a seizure but rather some benign involuntary movement of which she is unaware due to her neurological state. I first noticed it several months ago but presumed it wasn't cause for concern; maybe even some normal habit she'd picked up. Arnold wasn't so sure so he raised it. I suppose "normal habit" isn't an option for Haya. 

This is the clip of that twitching which we showed the doctor.

And here is Haya in the hydrotherapy pool this week. We're keeping it up through rain and cold!

Look who's promoting institutionalization now

From the UN CRPD website

Last week I was quite optimistic when I learned of the scheduled cabinet debate regarding the proposed grant of tens of millions of shekels to Doron Almog's ADI Negev ["Ministerial scrutiny of Israel's largest institution for children with disabilities?"].   

I  progressed from that to elation when Haaretz, Israel's leading newspaper, published a piece (in Hebrew only at this stage) about the issue this past Friday [תוכנית להרחבת מוסד לאנשים עם מוגבלות מציתה מחלוקת: האם המקום פוגע בדייריו]. 

True, it was only guardedly critical of Almog and his institution for people with disabilities - but it was critical. And that spelled a sea change in the Israeli consensus. 

In its wake I toyed with this upbeat line for my tweet: "One Small Step - or One Giant Leap?" My more grounded husband assured me it was neither (see my Tweet).

And he was so right. 

Because today, the most powerful man in our government posted a tribute to ADI Negev and a veritable hagiography of Doron Almog. On his Facebook page! That's our prime minister to whom I'm referring. The man who is supposed to be tackling existential threats like Omicron, terrorism, Iran's nuclear activities. 

Yes, he actually found the time to promote the institutionalization of babies and children with disabilities far from their families in large, closed residences. 

And he did that with utter disregard for the UN Convention on the Rights of Persons with Disabilities. The treaty that Israel signed onto and then ratified in 2012. 

Today a more apt tweet would be "One Step Forward, Three Steps Back". 

Bizchut is urging everyone to elucidate the above for the prime minister, Naftali Bennett in a comment on his Facebook page. And yes, mine's already there.

Ministerial scrutiny of Israel's largest institution for children with disabilities?

Prime Minister Naftali Bennett chairs the first weekly cabinet
meeting of his new government June 2021 [Photo: Emmanuel
Dunand/Reuters]

I have written often and over a long period about the chain of institutions here in Israel called ALEH. 

It originally consisted of four residential facilities in different cities housing a total of some 800 babies, children and adults. 

I have never had anything favorable to say about the operation, to put it mildly. I am not a fan of theirs and am opposed to the core values for which they stand.

ALEH, as a chain of institutions for children with special needs, has pretty much disappeared as a brand name. On this archived website, you can see how they used to call themselves "Israel’s Largest Network of Care for Children with Severe Multiple Disabilities" as if that were something to be proud of.

No longer. 

About two years ago, Doron Almog, who established ALEH's Negev branch, announced that it would thenceforth be partnering with the Jerusalem branch under the name ADI and under his leadership. The remaining two branches, one in Gedera and the second in Bnei Brak, would operate as part of a separate entity under the ALEH name and under the leadership of Rabbi Yehuda Marmorstein.

The entire transformation has been characterized by fog and confusion.

This post is triggered by something unusual: a discussion that was due to be held in Israel's Cabinet today (Sunday, December 12, 2021). It's not clear to me that the discussion happened or whether it was pushed off. We will probably soon know.

The institution formerly called ALEH Negev, now branded ADI, has enjoyed "etrog" status in the Israeli government as some of my previous posts indicated. 

See for instance: Aleh vs ADI [November 17, 2020]; On voluntourism [January 25, 2018]; Is this why our government loves Aleh? [January 15, 2018]; A bad idea dressed up as good news [January 23, 2017]; Cultivating the Negev on the backs of the most vulnerable Israelis [August 3, 2016]; Aleh 101 [January 13, 2016] and more.

The following letter which appeared today in a Whatsapp group to which I belong is being widely circulated among Israel's activists for the rights of people with disabilities. It is written in Hebrew but here is an unofficial English translation:

At a cabinet meeting scheduled for today, December 12, 2021, the following proposal will be discussed: That tens of millions of shekels be granted to ADI Negev, an institution for people with disabilities. The proposal's details are unknown to us but the very intention to allocate millions of shekels to this institution raises concerns that this is a plan which contravenes, in whole or in part, the International Convention on the Rights of Persons with Disabilities, which was ratified by the State of Israel in 2012.

One of the treaty's core tenets is the right to live within the community, the right to fully participate in society and and the right to inclusion in society. The Convention, and its official interpretation, oppose outright the existence of institutions and of residential frameworks with institutional characteristics. These include, among others, residences with a large number of people with disabilities in one place, segregation away from the general community, the inability of the individual to make decisions - even the most basic decisions - regarding his life and so on.

Therefore states that have ratified the treaty are required to prepare a plan that will eventually lead to the closure of all such institutional frameworks for people with disabilities, while developing community services for them.

 

Needless to say, international law prohibits the allocation of resources to further the operations of institutional frameworks.

It will be recalled that even the international committee appointed by the Ministry of Welfare a decade ago, ordered the closure of all institutions within a decade.

Yet, despite all of the above, instead of closing institutions the government [of Israel] is now acting to expand existing ones.

The ADI Negev institution is home to over 150 people. Over the years, more services have been added around this institution, all of them intended for people with disabilities, including employment opportunities. This lifestyle, involving the concentration of people with disabilities in one place, where they live and work - and all of this far from the "normative" community - contravenes international law. 

Every addition of resources to the institution and to the segregated services surrounding it (excluding the rehabilitation hospital) contravene the international treaty and the values of equal human rights.

We therefore call upon the Ministers to oppose this decision today pending a transparent public debate and the clarification of the decision's details and of its compliance with the guidelines detailed above.

The extremely well-connected Doron Almog who heads the operation can't be too happy today.

Watch this

View it on YouTube here

Today is the International Day of Persons with Disabilities. 

If you are searching for some way to mark the day, I can help. 

The following documentary aired this week and I have been raving about it ever since to my family. 

It's unique in several ways. First, a pretty, successful British actress narrates it. Second, she is personally involved with the topic via her Downs son. And third, her message is a minority and controversial one. 

I hope you find the time to watch it.