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.

Forever fifteen, forever missed

The last photo taken of Malki as she took part in a birthday party of
a classmate on the night of August 8, 2001. Malkiwas murdered at
2:00 pm the next day. 

A slightly different version of this essay was first published on the Times of Israel website a few days ago under the title "Forever fifteen". Malki's birthday is November 27.

---

Today we mark yet another agonizing birthday. 

My sweet daughter Malki would now be thirty-five years old if Hamas operative Ahlam Tamimi had made some misstep on August 9, 2001.

But Tamimi was and still is a seasoned, determined, efficient and blood-thirsty terrorist.

In the Sbarro bombing which she confesses she masterminded and which she calls “my operation”, seven babies and children perished with nine adults - some parents alongside their offspring. It was an unmitigated massacre.

Never could we have imagined that her murderer would now be free as a bird - and protected by a ruler who is coddled by both the United States and Israel – King Abdullah II of Jordan.

Tamimi's stated determination to kill Jews is matched only by the determination of world leaders to ignore our pleas to correct the travesty of justice that Tamimi's freedom embodies.

Our letters, phone calls, op-eds, tweets and front-page advertisement have fallen on deaf ears. They have only elicited excuses, evasive double talk, or total silence from most of the people who could easily assist us if they cared to.

There are no obstacles in their path: 

• Legislation has existed for years empowering the US to arrest, try and convict terrorists in US courts under US law if they kill a US national, which Malki was. 
• In 1995, an extradition treaty was signed and ratified between the US and Jordan and accepted valid by both countries. The State Department still takes that view. 
• Tamimi was added to the FBI’s Most Wanted Terrorists list in 2017. A $5 million State Department reward for her capture and conviction was announced in 2018. 
• Legislation enacted in 2019 empowers the US to impose a foreign aid sanction on any country failing to abide by its treaty obligation to the US, a measure likely directed at Jordan.

June 2001 - the last family celebration we ever had
with Malki present

None of the steps that could be taken to right this moral wrong has been taken.

It is demoralizing to realize that politicians, religious leaders, community figureheads and journalists across the board just don't care about seeking justice when doing so is unlikely to win them kudos.

Of course, we nevertheless intend to continue this fight. 

On this birthday, we cannot embrace Malki or the family we dreamed she would be blessed with by now. We can only write the next email or make the next phone call with the prayer that it will hasten Tamimi's long awaited extradition.

Finally: Fycompa

First Fycompa

Nearly two months after our tele-visit with Haya's new neurologist, we have, at long last, begun to administer the new anti-epileptic that he prescribed. The bureaucracy confronting us before acquiring it was daunting and, for the most part our health fund (HMO) gets the credit for that. 

We have given Haya two doses thus far and are holding our breath as we wait the six weeks to reach therapeutic levels. 

But we have already dropped one of her other meds - Vimpat - from 150 mg. to 100 mg. The aim is to eliminate that one. I have never observed any benefit from it; only gave it due to pressure from another neurologist and will be pleased to have it in our rear view mirror. 

And here's another "finally": a response from one dignitary who visited Aleh. 

Predictably, it was disappointing and wishy washy. To wit:

"I agree with you that every child deserves the best care possible. Ideally this would be provided at home by the people closest to the child like you describe. Yet, I have visited ALEH’s facility in Jerusalem and learned that many of the children ALEH cares for have severe and very complex medical conditions, where such quality care in a home-environment is sometimes very difficult or almost impossible to realize. I have met very committed and professional caretakers and loving families."

Stay tuned for my response to him.

Aleh vs ADI

Here's my update re the slugfest underway at Aleh. And my bet is it's the only update you'll get!

Neither side is clarifying what is going on or why. For now, I can only add that Doron Almog and his cronies have staked out the Aleh branches in the Negev and Jerusalem as well as the "Neuro Orthopedic Rehabilitative Hospital" alongside Aleh Negev which is slated for completion in 2021. 

He posts his PR material on a Facebook page under the name ADI - Advancement of People with Disabilities and Rehabilitation for All. From there he links to a new website: ADI-Israel.org 

Rabbi Marmorstein, his apparent adversary, has staked out Aleh Bnei Brak and Aleh Gedera. As he states here https://aleh.org/branches/

"The rehabilitative village in the Negev (“Nahalat Eran”) and the residential center in Jerusalem are no longer part of the ALEH network and have join forces under a new organization named ‘ADI.’ For more information about ADI Negev-Nahalat Eran and ADI Jerusalem, please use the following contact information [followed by a list of phone numbers in Israel, USA, Canada and UK]

On his Hebrew Facebook page, Marmorstein also claims to have opened a "new campus" which, he boasts, was recently visited by a couple of dignitaries from Ariel University. Here is my English translation of his report of that tour. There is no official translation anywhere of that since Aleh no longer seems to have an English language Facebook page:

"The CEO of Ariel University, Mr. Yoram Shai and our dear friend, Yehudah Drasinover, the Internal Controller of the University visited the new campus of the "Aleh" chain, In the course of the tour they saw up close the devoted care and huge investment in the dear children.
Yoram Shai said on the tour that the registered patent of Aleh is the professionalism and the faith in the special child. 
From Aleh comes the call to the entire world to do everything to improve the quality of life of everyone who is dependent on others 
Rabbi Yehuda Marmorstein told them that this is an emotional day for him and the beginning of cooperation between the "Aleh" chain and Ariel University."

The post elicited one comment from someone who asked: "Where is this new campus located?"

No response from Aleh.

However today Aleh's Facebook page mentions some "emotional installation" created by resident children which is situated "at the entrance to the new Aleh campus in Bnei Brak". No further details were provided.

The above report did not appear anywhere in English. That's because there no longer is an English Aleh Facebook page. It was removed last week when Doron Almog announced that he was taking over two of the Aleh branches - Aleh Negev and Aleh Jerusalem - and renaming them ADI - Advancement of People with Disabilities and Rehabilitation for All

Shortly afterwards an English language Facebook page under that name was posted: https://www.facebook.com/adiisraelrehab/

There he offers a long winded version of the split, his own accomplishments and a fantasmical summary of his institution's accomplishments replete with catch phrases like "multiple disabilities and complex medical issues", "fully inclusive", "to reach their fullest potential", and all the usual Aleh jargon.

I fear that this slug-fest may evolve into a tug of war over residents. Each camp may resort to more aggressive "recruitment" tactics to enlarge its number of residents and government funding. Marmorstein has been known to to call at least one parent urging him to hand over his child - that was related on an Aleh PR video clip!

Back at home, we have finally hooked up with a circle of SCN2A families In Israel. 

I had been hunting for just this sort of support ever since we received the news of Haya's genetic mutation in August, 2019. I found them via the global support group about which I've written in the past.

We are six families scattered around Israel and I've already exchanged a flurry of Whatsapps with them in the 24 hours since joining. We plan to have a Zoom gathering tomorrow night. 

Their children are all much younger than Haya and I hope when they hear how profoundly disabled she is they won't be horrified. I'll try to reassure them with the knowledge that medicine is better equipped today to treat our children's symptoms than it was 24 years ago when our nightmare with Haya began.

Anybody interested in joining can contact me at frimet.roth@gmail.com. for details.

An open letter to Jason Greenblatt

Arafat and Erekat [Image Source]

Mr. Greenblatt, as you are undoubtedly aware, my husband Arnold and I have been fighting for justice since 2012 for our murdered child Malki. 

On the 27th of this month she would have celebrated her 35th birthday. Instead we plan to visit her grave on that day. 

Hamas operative Ahlam Tamimi murdered her along with seven other Jewish babies and children and eight men and women in the 2001 Jerusalem Sbarro bombing.

Tamimi, released by prime minister Netanyahu in the Shalit Deal, is now a fugitive from the US Department of Justice which has demanded her extradition by Jordan. She is one of the FBI's Most Wanted Terrorists with a five million dollar reward on her head.

Between 2017 and 2019, in your capacity as President Trump's Special Envoy to the Middle East, you were well positioned to assist us in our struggle. You could have exerted additional pressure on King Abdullah II to abide by the extradition treaty his father and the US signed in 1995. Jordan has been flouting its legal obligations under that valid agreement since 2017.

You were apparently busy with other more pressing matters and never so much as tweeted a word in our direction. But somehow, astoundingly, you found it worthwhile to respond to Tamimi herself [here].

And today, you found time to tweet only hours after the announcement of Saeb Erekat's death. You conveyed "deep condolences" to his family, wished them "comfort and strength" and praised the deceased for having "tried hard to represent his people".

In truth, as you surely know, Erekat was a vile defender of Hamas and a champion of the rights of Palestinian terrorists incarcerated in Israeli prisons. 

On April 6, 2014, the official Palestinian Authority newspaper Al-Hayat Al-Jadida quoted Erekat saying:

"I am telling everyone, on behalf of President Mahmoud Abbas and the [PLO] Executive Committee, that Hamas is a Palestinian movement which never was and never will be a terrorist movement." 

On October 19, 2016 in the same paper, he urged these sentiments:

“Our brave prisoners, who gave and sacrificed their freedom for Palestine and its freedom, are worthy of aid, support and constant activity by us in order to release them and put an end to their suffering.” 

According to the quote, translated by Palestinian Media Watch, Erekat added that the Palestinian people “bow our heads in admiration and honor of the prisoners’ sacrifices, for their acts of heroism, and for their ongoing battle with the occupation.”

Mr. Greenblatt, you are a disappointment to your people and should be ashamed of yourself. Sadly, I no longer expect that of you.

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!