Silencing the whistleblower?

Nofer Moshe Fredo, a journalist at Kan, Israel's government TV station, tweeted what follows below and urged her followers to circulate it further. 

It highlights how brazenly ruthless facilities for people with disabilities can be. Their right to control and abuse our most vulnerable is so precious - and lucrative - they will even head to court to protect it. 

This specific instance, involving Neve Ha'Irus, about which I've written often (May 9, 2021; November 4, 2017; February 23, 2017; February 9, 2017; February 2, 2017; December 24, 2016) may confront the new Minister of Welfare, Meir Cohen, with his first real test.

It reads [my translation]:

Update on Neve Ha'Irus for the attention of the new Minister Meir Cohen. After the airing of an investigative segment on that place, among other things, about a resident who became physically disabled [due to mistreatment there] and about another one who died as a result of neglect and also about the locking of residents in the "white room", while several guards were fired and the Ministry of Welfare conducted a hearing that led to a series of procedural changes. Nevertheless, at the same time, the administration of that place decided to sue one of the employees who revealed and warned of incidents of violence against and injury to residents. They argue that he violated the privacy of residents. But don't be confused, this is a cynical lawsuit that is making use of a law intended to protect residents in order to signal to other employees that it would be worthwhile to keep quiet.

The court document, which Fredo posted, demands the following court orders:

• That the respondent be obligated to hand over all the photographs in his possession that he took of residents at Neve Ha'Irus.
• That the respondent be forbidden from using in any way either now or in the future photographs that he took at Neve Ha'Irus...

From one of my earlier Neve Ha'irus

posts - click image to enlarge [Link]

It goes on

The interest of the plaintiff [Neve Ha'Irus] and the context of the lawsuit, as detailed below, relate to the crude and serious violation of the obligations of the respondent who has a past rich in fraud and acts of deceit, towards the plaintiff.

There was more outrageous legal nonsense in Neve Ha'Irus' complaint but I'm sure you get the picture. 

It reminds me of the times I attempted to document neglect in other institutions for people with disabilities only to cop reprimands from the administration and staff for "violating the privacy of residents".

Verbal accounts, minus supportive photographs, are light on impact and accomplish little - as we all know. It remains to be seen whether the court will agree. For now, please help Nofer and circulate this further.

Praise for institutionalization from a senior hospital official?

ADI Negev [Image Source]

I always open the Facebook page of ADI (previously known as Aleh) with the dread that I will see photos of yet another prominent influencer visiting its very well-appointed facilities. Those images would naturally be accompanied by some adulatory speech delivered to the place's founder and CEO, Doron Almog.

And so it was today. Right down to the predictable hyperboles: 

ADI staff members and volunteers... are fully dedicated to every child and young adult and possess the wonderful gift of being able to see the hope and the ability within every disability. We are so grateful to ADI for their incredible work and wonderful partnership! [Archive link]

The culprit this time was Prof. Ofer Merin, director general of Shaare Zedek Medical Center Jerusalem.  His 'offense' against people with disabilities was committed earlier this week.

It is always infuriating when medical professionals in particular laud ADI for violating the rights of people with disabilities by isolating them from the community, locking them up in a large, closed institution. 

Here's what I want to say to them every time I see such a thing:

I mean, really, what did you learn in medical school??? Are you that clueless about experts' views of institutionalization and the damage it wreaks?

Advocates for the human rights of people with disabilities fervently hope that once our new government unveils its position regarding institutionalization and pursues it, Professor Merin will prove to be but an anomaly. 

The new Minister of Welfare, Yesh Atid's Meir Cohen, an educator, a former two-term mayor of the southern city of Dimona and previously a Minister of Welfare between 2013-2014 has yet to address activists' demands for the transfer of those locked in institutions to in-community living in small group homes or with their families. 

Haya at home this week

He will face a challenging job finally propelling Israel's citizens with disabilities into the 21st century..

And while he's at it, he might see to re-educating all of Israel's "Professor Merins"!

Back here at hone, we are persevering with the Ketogenic Diet and still praying that the decrease in seizures will deliver an improvement in Haya's functioning. So far, no sign of that. 

The dietician promised to raise the carbohydrate component of our recipes to attempt to energize Haya. But she (the dietician) is away sick this week so the new recipes haven't arrived yet. 

I have bought another toy to practice pressing on buttons and eliciting sounds and music. At this stage, we need to press Haya's fingers for her. My dream is that she'll learn to do it herself - really quite modest as dreams go, don't you agree?

So, maybe one day?

I haven't resumed her speech therapy sessions yet though our health fund (kupat holim in Hebrew) did agree to subsidize 12 of them. 

At this stage, I am simply not confident Haya will be responsive enough to make it worthwhile.

A room of one's own

Good night: My daughter asleep in her own bed,

in her own bedroom, in her own family's home

A High Court of Justice decision handed down in Israel on December 5, 2019 has been circulated this week among disability activists. I saw it and here are some brief details.

The plaintiff was Ronit Shmueli and the respondent was the Branch for the Care of People with Cognitive Disabilities in Israel's Ministry of Labor, Welfare and Social Services, .

In my words based on the Hebrew-language source, the court ruled that:

If a resident has requested a private room. the director of the institutional/framework will make an effort to assign a room to that person according to his/her request, taking into account the general circumstances and personal and professional considerations pertaining to that person and to the others who reside with him in the framework. 

In cases where a room in the institution where that person resides and that accords with the wishes of the applicant cannot be found, he/she will be placed on a waiting list... 

The Ministry will examine the subject of waiting for single occupancy rooms as part of its ongoing, comprehensive supervision of frameworks.

Having myself visited ADI's Jerusalem branch, let me assure you that residents there do not sleep in private rooms. But then I would have been surprised if they did. Remember: the head of the organization that operates those institutions fervently believes that life in a large, locked and isolated institution is, to quote him in a recent hagiographic article in the Jewish Journal of Los Angeles

"a home and a family providing a continuum of loving care from infancy and childhood through adulthood. Some of our residents are in their 60s.”

Puzzlingly, that piece also relates that, in a speech he gave at ADI's southern branch, Nahalat Eran, Doron Almog recalled: 

A man said to me recently, ‘We remember how you used to come here [he means a specific country club swimming pool] with your son, and some people used to ask, ‘Why is he bringing his retarded son here?’ and you said to one of them, ‘I think you are the one who belongs in a closed institution.’

Almog proceeded, shortly thereafter, to found just such a closed institution, Nahalat Eran, for vulnerable, defenseless children taken from their families.

Go figure.

Is it the diet? The meds? The syndrome?

Monday saw us in the pediatric neurologiy department of Sha'arei Zedek Hospital to bring Haya to the doctor and the dietician - with a medical student observing us. 

We related how sleepy and often "zombie-ish" Haya has been and how her assisted walking has deteriorated. 

Before her Status Epilepticus hospitalization episode in March, she could walk 45-60 minutes. Usually, these days she can't even cope with a half an hour of it. At that point she begins either trembling, seizing or slumping over. 

We all agreed that the cause of her deterioration - despite the dramatic drop in daily seizures - could be due to any one of several causes: the Keto diet which we started during that last hospitalization; the medications; or just the progression of her syndrome. 

The neurologist, though, was doubtful that the diet is the culprit since it isn't known to have this detrimental effect.

Nevertheless, the dietician did propose a few changes to it which she thought might improve Haya's functioning. One is raising her MCT oil dose to eliminate Haya's extreme constipation. The second is increasing the percentage of carbohydrates in her Keto meals since her Ketone levels have been satisfactory. (Yay for that thin silver lining!)

Somehow, thank heavens, Haya's floating and calm in the pool have remained unaffected by her general downturn. That gives me a huge boost. 

Here she is the very moment her body slid into the water; no need for her to acclimate; just immediate calm.

Strength in numbers

I belong to two SCN2A WhatsApp groups. One is global, the other is Israeli. The latter is a cozy one of about eight mothers. Their children are all babies - primary school age. None is nearly as severely affected as Haya. (And one of them has four genetic mutations besides SCN2A!)

Occasionally, mothers post clips of their children achieving milestones and we all text our congratulations to them. But, to be honest, those exchanges cause me a tinge of pain and loneliness. Haya is in a league of disability all her own within this group. She just doesn't do milestones.

Yesterday, however, we all bonded beautifully over a group achievement. 

I had attended a Zoom gathering of the global support group two weeks ago where I mentioned that Israeli parents were not included in a certain survey which was limited to families in the US, Canada and Northern Ireland. 

The study we wanted to join is called The SCN2A Clinical Trial Readiness Study. It's conducted by two partners: The Families SCN2A Foundation and the Ann & Robert H. Lurie Children's Hospital of Chicago.

The moderator, Carla Forbes, suggested that if all the Israeli parents would send in the request to be included then at some point in the future the global organization might amend their policy. She sent me the link for that request which I posted to our local Whatsapp group.

Most of the eight Israeli mothers immediately submitted the request. 

And then, I kid you not, manna fell from the skies. We all received an email notifying us that due to the "tremendous" response from Israel, the policy would be changed and we would be included. It said we will receive dates/times for our hour long phone interviews in the near future.

For an organizer, this is probably small potatoes. But I have never organized anything let alone something of such import. So I'm left feeling amazed, thankful and grateful to Carla Forbes, who urged me on. I hope that the years of experience we have had with SCN2A through Haya will provide helpful information via this survey.

By the way, all of the parents of SCN2A children whom I have encountered in both support groups are raising their offspring at home! 

 And to add to that segue, here's the latest influencer who has joined the ranks of Doron Almog's admirers. 

As posted on the ADI Facebook page, Professor Dr. Yaniv Sherer, CEO of Barzilai Medical Center hosted Almog. Like the many officials who have preceded him - here's my list - he lavished fulsome praise on the CEO of ADI:

“Today, I had the honor and privilege of hosting at the Barzilai Medical Center a man who is a legend, both as one of the greatest IDF combatants of this generation and as a civilian activist. Major General (Res.) Doron Almog, the Founder and Chairman of ADI Negev-Nahalat Eran and an Israel Prize laureate, has transformed one man’s vision into a movement that is shaping the reality of an entire country and society, changing its attitude toward the most vulnerable among us, and spotlighting the idea that ‘𝘁𝗵𝗲 𝘀𝘁𝗿𝗲𝗻𝗴𝘁𝗵 𝗼𝗳 𝘁𝗵𝗲 𝗵𝘂𝗺𝗮𝗻 𝗰𝗵𝗮𝗶𝗻 𝗶𝘀 𝗼𝗻𝗹𝘆 𝗮𝘀 𝘀𝘁𝗿𝗼𝗻𝗴 𝗮𝘀 𝗶𝘁𝘀 𝘄𝗲𝗮𝗸𝗲𝘀𝘁 𝗹𝗶𝗻𝗸.’ The village he founded is a beacon of love, rehabilitation and kindness to its residents with severe disabilities, outpatients and visitors from across Israel and around the world. We are so grateful to Doron for his informative lecture and enlightening conversation with our Barlizali team."

-- Prof. Dr. Yaniv Sherer, CEO of the Barzilai Medical Center, June 7, 2021   

Unlike the politicians whom he is parroting, Professor Dr. Sherer is surely well aware that Almog is operating large, closed institutions for people with disabilities, isolated from the rest of society and now nearly extinct in the rest of the developed world. He ought to know better.

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!