Deinstitutionalizing Israel: Battling uphill

The Knesset chamber

Yesterday's Maariv revealed that ten years ago Israel's Ministries of Health and of Welfare appointed a committee of experts to submit a report on the problem of residences for people with disabilities. 

However, they ignored the conclusions reached by those experts.

One of the solutions suggested by the experts was for Israel to transition from institutions to independent living within the community. It recommended that no more than six residents live in each apartment.

Bizchut, Israel's leading advocacy organization for people with disabilities, has now publicized for the first time its conclusions regarding that report. 

It discovered that, as of today, a decade later, those recommendations have not been implemented. Large, closed institutions continue to operate and hundreds of people with disabilities are kept in them against their wishes and without the possibility of living independently in the community. Many others must live with their parents.

Tommy Barchako is one such young adult - with CP - who rejected the Ministry of Welfare's placement in a closed institution. 

He says (my translation from Hebrew): 

"The services that I can receive in the community are very limited. They [the Ministry - FR] push people like me into institutions. That solution is unacceptable to me because there are institutions that force you to live a life that you don't choose and that doesn't interest you. But the State has no other solution to offer me."

In response to the Maariv piece, the Ministry of Welfare reportedly stated that 

"...only 16,500 people with disabilities live in institutions [in Israel] - all of their own choice and according to their wishes and the wishes of their families".

For anyone unfamiliar with the reasons for the growing outrage among people with disabilities and their families, below is a CCTV clip that captures flagrant abuse of one such resident:

 
On the two WhatsApp groups to which I belong devoted to activism for people with disabilities, passions have recently been ignited. The video clip above and the latest abuse scandal in Neve Ha-Irus have been the catalysts. 

Everyone is well aware that ours is an uphill battle. We lack large numbers and influential allies.

The list I've compiled below highlights those deficiencies. These are the names of government ministers, assorted lawmakers and various officials who have paid official visits to the institutions of ADI/Aleh in the past two years. While there, they posed for photo ops and lavished praise on Israel's largest chain of closed institutions for those with disabilities, ranging in age from infancy to adulthood. 

They spewed cliches much like those below courtesy of MK Etty Atria Boston who last week paid her second (!) visit in two years to ADI Negev. (The translation to English is again mine.)

You are doing truly sacred work here at ADI, work that deserves great recognition and appreciation. As a Member of Knesset, I promise to continue to serve as an ambassador for enhanced disability inclusion and care for the benefit of ADI's residents and all people with disabilities across Israel. 

The visitors

• Netherlands Ambassador to Israel Hans Docter
• Yuli Edelstein, Minister of Health
• President Reuven (Ruvi) Rivlin
• Yoav Galant, Minister of Education
• Omer Yankelevich, Minister of Diaspora Affairs
• Michael Biton, Minister of Strategic Affairs
• State Comptroller of Israel Matanya Engelman
• Ariel University's Chief Executive, Yoram Shay
• Member of Knesset Haim Katz
• Member of Knesset Bezalel Smotrich
• Member of Knesset Etty Attia - twice!

Unexplained upheaval at Aleh?

Haya

Knesset member Yuli Edelstein, our current Minister of Health, was the lucky recipient of an email last week. A critical one - from yours truly. 

He was the latest VIP to have trotted over to an Aleh branch to praise the leading chain of large, closed institutions in Israel.

Predictably, in his quoted address there, Edelstein failed to mention Aleh's central endeavor: the removal of babies, children and young adults from their families to be isolated in its four institutions housing a total of nearly 800 residents.

In so doing he joins a long list of celebrities who have done the same, to whom I have written and who have chosen to ignore my questions.

Another of those, the Dutch ambassador to Israel, Hans Docter, will address an Aleh virtual conference on Wednesday, November 11. I wrote to him about that gig a week ago and confirmed by phone that he received my email. To date, I have, predictably, received no response.

Remember: Ambassador Dokter is honoring an enterprise of the kind [link] that has been phased out and maligned in his home country...

There, as in the rest of the Western world, children with disabilities are deemed deserving of the warmth and love of their own or adoptive families. Why are Israeli children with disabilities any less worthy of that basic right?!

Alongside the constant parade of visiting dignitaries - Jerusalem's mayor included, but I haven't written to him - Aleh has apparently experienced significant changes, perhaps (I don't know) an upheaval. 

Only hours ago, a friend of mine who is on their mailing list, received the following email from Doron Almog, founder of Aleh Negev:

"I wanted to share some exciting news with you. After many years of partnership with the ALEH organization, we will be moving forward under the name ‘ADI.’ We are so grateful to ALEH and its Founder and Director General Yehuda Marmorstein for many good years of collaboration on behalf of the weakest members of society. Doron Almog will be leading ADI as Chairman of the organization, Avi Wortzman as CEO of ADI Negev-Nahalat Eran and Shlomit Grayevsky as CEO of ADI Jerusalem."

At the time of this writing only the English language Facebook page of Aleh has been renamed as ADI. The Hebrew language page remains entitled "Aleh". No formal announcement of the changes has been made, as far as I can tell, other than Almog's circular to Aleh donors.

Here's hoping that the changes will somehow benefit the most vulnerable of our citizens and grant them their long overdue freedom and equality. Somehow, though, I fear that these changes only signal deeper entrenchment of institutionalization in this, sadly backward, state.

The photo I posted above is of Haya looking IMHO utterly normal. It's her favorite sleeping position and I enjoy seeing her this way.

Other good news: We have received our Health Fund's authorization for that new anti-epileptic, Fycompa. Our pharmacy will now order some for us. 

Since we must increase the dose very gradually it will be about a month before we can assess its efficacy for Haya. But count me as "unrealistically but extremely optimistic".

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!