Aleh and ADI: Allies or adversaries?

Wonder of wonders: the information I requested in mid-August from the Ministry of Labor, Welfare and Social Services under the Freedom of Information law arrived!

The very welcome spreadsheet has statistics regarding the residents of institutions for people with disabilities which are under the Ministry's supervision. Tallies and dates for residents who were quarantined, ill with the virus and passed away from it are all there.

I'll cut to the chase: Twenty-one residents had succumbed to the virus as of November 25, 2020. One was from Aleh Gedera and a second from Aleh Negev.

Why is this being concealed from the public?

In the meantime the apparent fist-fight between Aleh and the newly created ADI shows no sign of resolution. So, if you go to Aleh's Facebook page and click on the words "Updated website address", you will not arrive at Aleh. Instead you reach an ADI site about its two institutions: ADI Jerusalem and ADI Negev Nahalat Eran. 

You'll also see plenty of adulatory words about and photos of Doron Almog.

If you return to that Facebook page and click on "Aleh has updated their info in the About section", you'll arrive at a page telling you in Hebrew: "The requested page cannot be found"

I'm sure there's a simple explanation for the chaos - which I'm eager to know already.

The crucial question is: How is this upheaval affecting the children in Aleh and ADI's care? And will it reduce government funding of those institutions?

Are we, perhaps, on the cusp of the start of deinstitutionalization of children with disabilities in Israel?

Praying we are.

To quote Diana Ross: I'm still waiting

The Diana Ross song is here

Waiting, waiting and waiting some more. Aside from the US presidential election results, we're doing a heck of a lot of other waiting.

1. While she suffers from daily, debilitating seizures, we're waiting to get that new med, Fycompa (generic name: perampanel), for Haya. The neurologist mistakenly sent us on the 29 Gimel track for authorization. It turns out he isn't familiar with the workings of Israel's health funds so he's not to blame. I've been speaking to both our pediatrician - who must write us the script - and the secretary at the health fund office in order to get this process on the right track. For now, the ball isn't even rolling yet. And authorization remains a dream. 
2. I am also still awaiting a response from the Ministry of Welfare regarding the residents of institutions under its supervision. Specifically, what I want to know is in which institutions the victims of Covid-19 lived when they fell ill. Under the Freedom of Information Act, the public is entitled to that. It even has a name: segmentation. I was only given general numbers by the Ministry back in July. To date, the Ministry has only responded to extend its time limit. I've learned that it is entitled do that three times to reach a maximum of 120 days At that point I can proceed to the government ombudsman.
3. Waiting is ongoing for a response from the Ambassador of the Netherlands to Israel who is scheduled to speak at an Aleh event next week. Why would an ambassador from a country where family care is the accepted policy for its children with disabilities promote the removal of children from families in Israel!? I will share his response as soon as it arrives here.

But at least we're not waiting for magnificent hydro sessions for Haya. This week, due to some malfunction, the pool we rent for her therapy was heated to 34 degrees Celsius. That meant we were able to dispense with her wetsuit, allowing for greater freedom of movement. 

Here she is, relaxed and floating skillfully even without the added buoyancy of the wetsuit.

Good job, Haya!