The Ministry's march back to the Middle Ages

Restraint bed: Illustration from a Disability Rights California guide 

This month, Israel's Ministry of Welfare and Social Affairs (משרד הרווחה והביטחון ההחברתי) announced that it will be enacting a law which will regulate the use of "restrictive protective measures" in institutions for people with disabilities.

The mere phrase sounds alarm bells. 

That is, for anyone concerned about the welfare of our most vulnerable citizens and, of course, for those citizens themselves. 

But, somehow, these words are used acceptingly by most everyone else. That would explain why the infliction of such measures - which include restraint chairs, bed restraints and isolation - has thus far been dealt with only in the Ministry's internal procedures. 

The institutions have enjoyed extremely broad discretion in their use. According to the Ministry's recent memorandum, this practice has "increased the potential for harming the rights of people with disabilities and the staff working in the frameworks".

That new memorandum of the law states that a restrictive protective measure will be defined as one that 

"reduces the movement of a person in space, including the movement of his body, with the aim of maintaining the personal safety of the person or others from actual risk."

Beyond this, it does not specify the restrictive measures that will be regulated. Nor the duration and frequency of their use.

Moreover, once it is enacted, the use of such measures against a person will only be permitted after other options to prevent the danger have been examined and ruled out. The prior approval of professionals as will be stipulated in the regulations will also be required. 

And, finally, the use of these measures will be brought to a re-discussion once every period of time to be determined later.

However - and this creates a huge loophole - the amendment continues:

"In exceptional emergency cases that could not be foreseen in advance, it will be possible to take restrictive protective measures that were allowed to be used in the regulations in emergency cases without prior approval from the authorities, provided that their use is reported as soon as possible to the authority authorized to do so to be determined by the minister."

In other words, whenever the institution's employees deem a situation to be an "emergency" they are free to act as they please. Not surprisingly, advocates for the rights of people with disabilities are outraged by the Ministry's decision. 

Bizchut, The Center for the Human Rights of People with Disabilities, had already submitted a petition to the High Court protesting the use of such measures months prior to the memorandum.

The group's attorney, Vered Bar, now said of the impending amendment that it 

"reflects shocking perceptions regarding people with disabilities. We could not imagine a parallel procedure which allows restrictions regarding any other population."

She added that it 

"will allow the Minister to determine the use of restraints as he sees fit. Those staff members who have been exposed just this past year as having perpetrated violence, abuse and neglect will be the very ones to determine whether a person will be locked up or tied to a chair."

Naama Lerner from Hatnuah L'Atzmaut - the Movement for Independence, an organization working to promote "independent life with personal assistance for every person with a disability in Israel", warned that accepting the memorandum of the law would cast a "terrible stain on the State of Israel".

According to her, the "calming measures" that the Ministry will adopt include

"tying people to a heavy metal chair so that they cannot get up from it and move around or locking people in isolation rooms that have nothing but a thin mattress on the floor."

She explained that "These are means of intimidation, humiliation and abuse.". And noted that after receiving a permit, "it is unlikely that the caregiver in the institutions will comply with the usage restrictions that will be established."

This amendment is propelling us back to the middle ages.

But we may succeed in blocking its enactment by inundating the Ministry with our objections. Here is the link for lodging your complaint. The cutoff date is March 5, 2023

The following (translated by me from the Hebrew original) is an excerpt from the response of a person diagnosed with Autism to the proposed amendment: He is non-verbal and communicates only via his keyboard:

"The thin veil of civility that has covered society since dark times is crumbling. We are a society where there are laws against abuse of the helpless, like in advanced societies in the western world. A person is no longer put in a dungeon just because he looks different and behaves differently... And suddenly, someone in the Welfare Ministry woke up, scratched his scalp and enacted a law that means: the celebration is over. Enough, you've had enough. You are the disease, and we have a cure - punishment for "bad behavior"...  Someone in the Welfare office thinks we are very spoiled and need to be restrained. It was important to him to convey to us the message that life is not therapy but survival. A jungle!" [Source: Shavvim]

Let's not abandon him and others sharing his plight.

How Israel treats its disabled has been concealed for too long

A version of my opinion piuece below was published by Jewish News Syndicate on January 22, 2023 under the title "Life for Israelis with disabilities is a well-kept secret | For-profit institutions and government neglect have led to brutal abuse and exploitation."

Much has been written about the new Israeli government’s proposed changes to Israel’s immigration laws. This principally concerns the Law of Return, which grants Israeli citizenship to anyone with one Jewish grandparent.

But less attention has been given to another change in aliyah requirements. It affects potential immigrants with disabilities.

Until now, olim with disabilities must physically arrive in Israel before applying for recognition of their disabilities, a demanding and time-consuming procedure. 

Only after this process will they be eligible to receive government disability benefits.

Under the new procedures, they will be able to apply for such recognition before actual immigration.  With their legal rights ensured beforehand, it is anticipated that their assimilation into society will be easier.

This change will almost certainly be enacted. But we do not know whether crucial information will be shared with potential olim during this new process. 

Will they be alerted to what awaits disabled people in Israel? Will they be warned that Israel still warehouses many of its disabled in large, closed and isolated institutions? Will they be informed that the situation with which they are likely familiar in their home countries is a far cry from Israel’s situation?           

In short, will they arrive here with their eyes wide open? 

There are some statistics they would surely like to ponder:

• 88% of Israeli citizens with cognitive impairment who live outside their own homes are institutionalized.  
• 17,000 people live in 491 housing facilities for people with disabilities and special needs. This includes institutions that serve the cognitively impaired, emotionally impaired, autistic and those requiring special rehabilitation. 
• Most Israelis with cognitive impairment and autism live in closed institutions remote from the community, where they are denied the right to autonomy and privacy, and where frequent and severe neglect takes place.
• Some 50% of these closed institutions are operated by approximately 70 different private for-profit companies. The same number of operators are NGOs. Only nine institutions are government-owned.
• Thousands of citizens with disabilities who live within the community do so in difficult conditions of loneliness and without basic services.

These are disheartening numbers that need not be Israel’s reality.

The United Nations Convention on the Rights ofPersons with Disabilities, which the State of Israel ratified in 2012, declares that the state must ensure that people with disabilities live equally in the community and freely choose their lifestyle.

In June 2022, the Knesset passed a law that anchored the right of disabled people to an independent and autonomous life in the community.  This law will remain dormant until the relevant regulations are drafted, with 2024 set as the target date for its implementation. So, there will be no significant change to the status quo for some time.

This is an under-reported topic. As a result, few know that every couple of months, incidents of severe abuse and occasionally death are inflicted on disabled residents of Israeli institutions. When Hebrew news outlets do briefly cover these stories, they tend not to appear on English-language sites.

Over the past six months, four disabled residents have died, three in one institution due to food poisoning, and the fourth in a brutal attack. Another incident of physical abuse was caught on a security camera this month. The perpetrator of the assault, a nurse, has been arrested.

Unfortunately, police investigations are rarely launched and can drag on interminably. Many are closed without any indictments due to “lack of evidence” or “unreliability of witnesses.” When cases are tried, sentences are rarely more than a slap on the wrist. 

Why are these institutions given free rein?

One theory is that the profits they provide are simply too enticing. Greedy operators intensively lobby politicians to keep these institutions open. Naama Lerner of the grass-roots organization Hatnuah L’atzmaut (The Movement for Independence), explains, 

“Since the advent of privatization, operators of institutions receive between 13,000-20,000 shekels/month per resident and are thus highly motivated to retain them. They hire one carer for ten residents so they spend less than 1,000 shekels/month per resident.”

The Movement for Independence is determined to change that. 

Comprised of activists with and without disabilities, family members, experts and laypersons, the group promotes independent living with personal assistance for every disabled Israeli. However, it is facing government apathy and operators’ determination to continue profiting off disabled people.

An Israel-based non-profit called MDF represents these institutions. It was registered in 2009, but its records at the Ministry of Justice appear not to show any activity. The organization has filed only one annual financial report, in 2012. Its registration document indicates that a former member of Knesset, Yoel Hasson, functions as the director of its lobbying efforts. 

In Dec. 2022, MDF organized a protest outside the Jerusalem head office of the Ministry of Welfare to demand increased funding for the operators of privately owned and operated residential care institutions for people with disabilities.

Naama Lerner, who co-founded and today heads the Movement for Independence, staged a one-woman counter-demonstration to criticize the owner/operators.

She said, 

“Death is the really most extreme case. There are many, many, many problems faced by people in institutions. Let’s start with the ‘soft’ items. The ‘soft’ items are that a person is deprived entirely of his privacy. He doesn’t determine who will sleep with him in his room. He will never have a private room. People who are 20, 30, 40 years old who need a private room, personal closet, personal clothing, a moment to be alone. What do the institutions do to prevent this? They shackle them to beds, isolate them in rooms, tie them to restraint chairs, place splints on their arms so they can’t move their arms. All these things are also prohibited by law.”

She went on, 

“A supported housing program is a very important program, and without a doubt, it is the program that every person with a disability will have in the future. Everyone will have an independence-supporter who will accompany them to an independent life, help them build their personal plan and implement it. But unfortunately, today, with the program’s current budget and the severe limitations it places, it really suits but a few, and particularly those who can manage on their own.”

Another organization fighting for deinstitutionalization is Bizchut, founded by the late, legendary social activist Shulamit Aloni. It also believes in the right of every person with a disability to live in the community in a small and intimate setting granting them a life of equality and respect, personal autonomy and full integration.

Bizchut further maintains that, in institutions and hostels, where dozens and sometimes even hundreds of people with disabilities live together, the ability to maintain these basic rights is not possible.

Neither of the above organizations has voiced support for the change in aliyah procedures affecting immigrants with disabilities.

One of the bodies responsible for the change is the Jewish Agency, headed by Doron Almog. Almog is also, ironically, the chairman of two large, closed institutions—Adi Negev and Adi Jerusalem. 

Almog claims to care about the rights of people with disabilities, to which his many speeches and articles on the topic attest. Here is but one example: “The way in which we relate to the most vulnerable among us, those with disabilities and multiple challenges, constitutes the greatest test of our society. It is only when our societies are able to make the care, development and inclusion of everyone part and parcel of our daily lives that we will truly live up to our own ideals.”

But as we know, talk is cheap and it is actions that matter. Almog’s actions consistently contradict his words. For decades, he has championed and helped raise millions of dollars in contributions for the two institutions he chairs. Together they keep 233 citizens, from babies to young adults, locked up and isolated from society.

So, will Almog and the Jewish Agency provide disabled applicants with the information they need before aliyah, such as the contact details of the organizations that endeavor to help people with disabilities live independent lives with government assistance?

Given the disheartening status quo, it is likely that some prospective olim will postpone aliyah until the 2022 legislation has gone into effect or until the advent of a more inviting scenario.

The alternative is an influx of shocked and unhappy new citizens. Would Israel welcome that?

I am the mother of a fragile 27-year-old Israeli woman who suffers from severe physical and cognitive disabilities, including epilepsy and blindness. Keeping her at home where she enjoys loving care from me and my husband is a struggle. But I have no doubt that had we succumbed to the pressure of her teachers and social workers, and institutionalized her, she would no longer be alive.

Now is the perfect time to publicize the ugly truth about Israel’s treatment of its disabled citizens. The secret has been kept for far too long.

A woman of valor

There are surely many unsung heroes among disabilities activists all over the world.

 
We are blessed with one in Israel, Adv Naama Lerner of Hatnuah L'atzmaut (The Movement for Independence): tireless, brave, determined, idealistic, compassionate, intelligent and religious - obviously a rare mix of traits. 

While she's often interviewed by journalists, and has been an activist for decades, she never toots her own horn. Which probably explains her relative anonymity.

Last week Naama exhibited unusual pluck which earned her a few kudos among activists. One person who acknowledged this was former Knesset member, Stav Shaffir. I've mentioned her here before because she organized the surprise visits paid by activists to closed institutions for people with disabilities in December 2018 in which I took part ["Making history: After the raid"].

She paired-up activists with Knesset members to enable us to gain entry to these normally locked institutions. (Note: the institutions are obligated to open their doors only to Knesset members.)

Naama Lerner protests outside Israel's

Ministry of Welfare, December 5, 2022 [Source]

Here - in my translation from the source Hebrew - is what Stav wrote about Naama on her Facebook page this past week:

I want you to meet a very brave woman: Naama Lerner. Yesterday she stood alone opposite the Ministry of Welfare in protest against the private companies that make millions at the expense of people with special needs. 

These companies receive a budget from the state in order to take care of them - but instead of paying a fair wage to the caregivers, they put the money in the management's pocket, and then come asking for more. 

The therapists get discouraged and are replaced, are usually untrained, and the treatment of a person with special needs - is accordingly. 

This year, residents in such institutions died due to food poisoning and in other unknown circumstances.
Naama stood there in front of the office alone, but she is really not alone: she stands on behalf of tens of thousands with special needs. On behalf of families who lost their children (physically or mentally) to institutions that did not treat them properly. 

I learned about her activities in depth when, as a Knesset member, I began conducting surprise visits to these institutions as a member of the Knesset - and I became a fan of her way, of her depth and endless devotion.
This year she founded the Movement for Independence which aims to promote people with special needs to independence in the community, instead of closed institutions. This is a movement in the right direction, operating with almost no resources against huge companies that make billions from the state and maintaining a strong lobby in the government. 

Let's cheer and strengthen her. She deserves it and we all deserve it.

It happened at the pool

That's us in the big pool

I am writing this post on International Day of Persons with Disabilities (IDPD). 

December 3 was first proclaimed as such in 1992 via United Nations General Assembly resolution 47/3. Its aim is to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities.

Here in my own world, this past week provided a small reminder of the long journey that faces our society before it achieves those goals.

First, a bit of background.

The local, private, small and generously-heated pool we have enjoyed using weekly during these past two years has been officially shuttered. A child was injured on a broken pool tile, the parents threatened to sue the owners, and the latter's lawyer advised them to cease renting out the pool because of liability risks. Needless to say, they have heeded the advice.

Last week, we hadn't yet been notified of the permanent closure. So we were still hopeful that the small pool would reopen soon. We took Haya to the nearest public pool, a much larger facility where the water temperature is set at 29 degrees Celsius (84 in Fahrenheit terms) as compared with the 32 degree (90 F) of the private one. 

That may sound like a negligible difference. But trust me, it isn't. When I swim laps in that same water, it's fine. 

But as her hydro-therapist and standing mostly-still in the pool for Haya's session, I freeze.

As soon as we were notified about the small pool's demise I ordered a wetsuit online. Here's hoping it arrives in time for next week's session.

But I digress.

A few days ago, on arriving at the public pool, we were greeted with a shock. I mentioned to the guard at the entrance that since my daughter is wheelchair-bound I will swipe my chip (a digital entry ticket with stored value - not uncommon here) for her upstairs and then wheel her in via the street-level entrance. 

"Your daughter is in a wheelchair?" the guard asked. When I concurred, she told me that Haya couldn't enter and that I must go speak to the secretary.

 
The secretary explained that the office had "received complaints" about Haya's presence in the pool because she is so severely disabled.

"You need to bring her to a therapy pool, not here".

While my blood reached boiling point and I was contemplating a response, she made a phone call. After hanging up, she did a complete 180.

"It's fine. There's no problem. You can bring your daughter in."

What had really happened is anyone's guess. But regarding the "complainants", the mystery was soon solved.

As the three of us - Haya's carer, my husband and I - brought Haya in to the pool area, a woman in the water addressed the lifeguard with the sort of anti-disabled venom I'd presumed had exited long ago.

"You can't allow her in!" the woman told him, carefully ignoring us. "She doesn't have authorization to use the pool! It's your responsibility to keep her out!"

When the kind lifeguard defended Haya, the woman and her buddy left the pool in a fury.

The need for an International Day of Person's with Disabilities is clearly an ongoing one so long as people with disabilities remain unwelcome and unwanted by vocal segments of society.

A shofar message for Doron Almog

Image Source

On August 16, 2022, Doron Almog took the helm of the Jewish Agency.  

Since his nomination for that position, on June 16, 2022, Almog has been hailed as an Israeli hero. Here is the Times of Israel summarizing his claim to that status:   

Almog, 71, a past head of the Israel Defense Forces’ Southern Command, dedicated his life after leaving the military to running a widely lauded rehabilitation village in the Negev desert for people with physical and mental disabilities. ADI Negev-Nahalat Eran is named for his son Eran, who had severe autism and physical disabilities before his death in 2007... [Times of Israel, August 21, 2022]

Since then, hardly a week goes by without a news item about Almog and the Jewish Agency. They have all been unadulterated hagiographies. And occasionally when no such report appeared, he - or his staff - seem to have produced their own. 

So it's fair to predict that some will be enflamed by what I have to say about him.

Almog oversees two large, closed institutions (one of which he founded) named ADI, for people with disabilities ranging from infancy to young adulthood. Its motto: "It’s all in the name: ADI celebrates ability at every level, promotes diversity and insists on inclusion."

He does so despite growing global opposition to institutionalization of this population. 

And he does so despite the recent passage of a new Israeli law that, once implemented, promises to begin the mass transfer of people with disabilities out of the sort of warehouses that Almog champions.

One would have hoped that Yom Kippur and the self examination it encourages would stir Almog to reconsider this major "life achievement" of his. It doesn't seem so when you read his latest op ed, replete with content like this:

"After honoring my late brother Eran who was killed in battle during the Yom Kippur War and my late son, Eran, who was born with severe disabilities, my life philosophy has always been to never leave anyone behind. This applies to my approach regarding aliyah as well. That is because how we treat the vulnerable among us reflects our morality as a society... The absorption of olim should be a national responsibility... We must continue to work, in accordance with the government of Israel, to reunite families and bring olim home, no matter where they are in the world. It is also our obligation to ensure that Ethiopian olim become the absolute best version of themselves. It is what they deserve and what Israeli society needs." ["A full-circle journey: Bringing Ethiopian Jewry home", Times of Israel Blogs, September 28, 2022]

I would remind Almog that much of what he promises to deliver to our new olim has never been provided to our "most vulnerable" as he refers to our population with disabilities.

"Absorption", "reuniting families", is also a national obligation toward those with disabilities who are taken from their families and locked up in large, isolated, closed institutions because the government refuses to provide for their needs at home.  

I am not alone in this assessment. 

Recently an employee at ADI Negev visited (infiltrated?) one of the Whatsapp groups in which I am active. It's designated for people with disabilities, their families and activists in the field.  She said she was soliciting employment as an aide for people with disabilities. But she added her view of ADI Negev: 

"I am referring to ADI Negev, the Rehabilitation Village, a wonderful place for any age with one on one projects and programs." [My translation of the Hebrew source]

And after she received negative responses re ADI, she wrote:

"First of all I didn't request opinions about ADI Negev. The place is not a fortress. It is actually a village, suitable and pleasant for residents happy with many programs and choice and they create gift (sic) and go out and more. I am only asking that if any of you are seeking a worker, for independence with individuals, approach me." [Again, my translation from Hebrew]

Naama Lermer, a disabilities-rights attorney and founder of Hatnu'ah L'atzma'ut ("The Movement for Independence") and formerly of Bizchut, then posted to the same Whatsapp group in response [again my translation of the Hebrew source]:

I know ADI Negev well. I visited there more than once . It's an institution in every sense of the word. Many groups of residents with disabilities. With a uniform daily schedule. Without any real connection to the community. Some of them are cut off from their families because their families live very far away. People who won't experience what it's like to lick an ice cream in an ice cream shop in the mall. To buy clothes in a clothing store. To get on a train and see the view. Adults who spend most of the day sitting with construction games or children's toys. And it's sad. I wouldn't want to live like that. I wouldn't want my children to live like that. So I don't wish that on anyone else. I want more than creative works and children's games for them. I want more than a clean, tidy place. I want a real life for them. Even if their disabilities are very present."

Many of us have just heard the shofar blown at the close of Yom Kippur prayers. In his New York Times op ed this week, the former chief Rabbi of Moscow, Pinchas Goldschmidt, wrote:

And this is perhaps what the shofar, the ram’s horn that Jews blow on the High Holy Days, represents. According to the Bible, the shofar blow is the sound of freedom. It was historically blown at the beginning of the jubilee year — the year that freed all slaves and returned all sold ancestral property. The sound of the shofar blow is meant to remind us of both freedom and equality.

Let's hope that message will reach those, like Almog, who persist in their perversion of "freedom and equality" to include the warehousing of citizens with disabilities in institutions.

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.

Haya's update: It's a downer

I'm holding a made-in-Israel Cannabis

THC drops product in this photo

Meds

Today is Haya's first day without any Vimpat. We had her on 25 mg per day for about ten days, down from her maximum of 150 mg twice day. I intended to wait until her seizures stabilized before zapping Vimpat entirely but seizures have been rampant. 

And we need Vimpat out of the picture before we can accurately assess Fycompa.

My hunch is this med isn't Haya's magic bullet. Which means we'll probably move on to the next gun - the Keto Diet.

These days, when all else fails I've been giving THC drops to stem the strings of seizures. Here she is (below) after 22 drops of it looking, I'd say, rather high.

Blood

It took about two weeks to organize but I was finally notified by our health fund that tomorrow, weather permitting, a visiting nurse will come to our home to draw Haya's blood. It will be used to do routine tests along with a Covid-19 serological test.

If we find that she has antibodies, we can stop deliberating over the vaccine - at least for a few months.

Hydro

On Monday, after a five week, Covid-19-caused hiatus, Haya finally returned to the pool. She relaxed and floated independently for the most part but her body often tilted to the left. That was disappointing. 

I showed my son-in-law who is a physiotherapist/hydrotherapist a video clip of her in the water. He recommends re-positioning her arms to the right as they rest on her chest and placing her left hand on her right. The clip shows that they were reversed. 

Can't wait to try those tips next session.

Haya

Labels

I often read posts by parents of children with a range of disabilities on various support group sites. Some are caused by the same genetic mutation as Haya's, some by other mutations and some by none. It's a very disheartening pastime.

I'm usually struck by how much higher everyone's level of functioning is than Haya's. And when they have epilepsy, by how much their seizure-control surpasses hers.

On a site devoted to people with Downs and their families I encountered a word now circulating: other-abled, as an alternative to the "D" word.

The truth is it's entirely inapplicable to Haya. She simply isn't other-abled. She truly is disabled, profoundly and I prefer to call a spade a spade.

Institutionalization Does Not = Inclusion. Ever.

Here we are at the mid-point of the 13th Jewish Disability Awareness, Acceptance and Inclusion Month (JDAIM). It is described as a "unified effort among Jewish organizations and communities worldwide to raise awareness and foster inclusion of people with disabilities and those who love them."

What better time than now to re-explain to supporters of ADI and Aleh (archived page) and their ilk how they deny people with disabilities their human rights.

For some of us, that may be as obvious as one plus one. Nevertheless, there are those, even some near and dear to me, who still ask "But don't we need those institutions? Aren't there many parents who don't want to raise children with disabilities? Where would those live?"

One of them recently pointed out: 

"Israel has a large ultra-Orthodox sector that eschews abortions. Doesn't that translate into an extremely high number of children with disabilities? And doesn't that mean that the alternatives implemented in other developed countries would not work here?"

In short: No. And here is why.

According to 2017 statistics, the number of children with disabilities in Israel does not surpass those of other Western countries. Some 8.5% or 242,412 of our children suffer from serious disabilities, chronic illness or some handicap that affects their daily functioning. 

An additional 4.5% have mild disabilities that don't have such an effect.

As of December 2019, there were some 373,000 Israelis below the age of 20 with disabilities of all kinds [Source: Government of Israel]. 

Those are not higher than the numbers for other major Western countries. In the United States, the percentage of children aged 3–17 years diagnosed with a developmental disability increased from 16.2% in 2009–2011 to 17.8% in 2015-2017 [Source: Centers for Disease Control]

In Great Britain, 8% of children are classified as disabled.

This is a perfect opportunity to return to the ethos of Lumos, the organization founded by J.K. Rowling to promote the rescue of children from institutions and their return to families and their communities.

"Residential institutions for children have many names around the world, including orphanage, children’s home and baby home. Regardless of name, size or location, institutional care is defined by certain characteristics:

‣ Unrelated children live in the care of paid adults. 

‣ Children are separated from their family and often their community. 

‣ In many cases, they do not have the opportunity to bond with a caregiver.

‣ Institutions run according to workplace routines, instead of responding to individual children’s needs.

Although some institutions are well-resourced with dedicated staff, they cannot replace a family. Eighty years of research has shown the negative impact of institutionalisation on children’s health, development and life chances, as well as a high risk of abuse." [Source: Lumos - Slide 2]

So please don't fall prey to the carefully premeditated tactics of ADI and Aleh. Especially insidious is their use of politically correct catch-words that disguise their true intentions. For instance, this sign brandished outside Aleh Gedera boasts the lie "This is Home, This is Heart".

ADI's latest fundraising campaign asserts that donations will "Enhance Care and Advance Inclusion." And it posts this boast on its Facebook page ad nauseum: 

Celebrate ABILITY, Promote DIVERSITY, Insist on Inclusion | These are our core values, and they are words to live by | Spread them during #JDAIM. Live them year round.

But if you don't believe me, Lumos or the child development experts, perhaps this victim of institutionalization, Tommy Berchenko, will sway you. 

The speech that follows is my translation from the Hebrew original of Tommy who is disabled and is operating a keyboard that vocalizes into speech what he writes:

Hello, I am Tommy. I live in Rosh Haayin and I am an activist for the human rights of people with Disabilities and active on behalf of dignified and appropriate housing for people with disabilities within the community. I have participated in demos against violence/abuse and neglect in institutions.

In my view, institutions do not advance people with Disabilities and they should be shut. I want to live independently in the community in my own home with the things that I love and to be and feel like every young adult despite my need for much assistance.

In 2012 the State of Israel committed to implement the treaty for equal rights for people with Disabilities and promised to advance the right to live within the community on behalf of people like me. [See below for Frimet's explanation of what Tommy means by this.]

Thousands of people with Disabilities live in institutions. The State does not provide the appropriate services in the community and therefore many young people are forced to live there. The institutional frameworks limit one's freedom of choice throughout his life even with the most basic things: what to eat, when to go to sleep, with whom to share a room.

In recent years, more and more incidences of abuse and neglect in institutions have been publicized. (Reported/come to light).

Today I am an activist for the rights of people with Disabilities and for the right to dignified in-community autonomous living. I intend to meet with the Minister of Welfare so that he will carry out the Treaty. The State does not believe that I can live independently. I will prove it!

The time has come for the State of Israel to recognize the right of every person with Disabilities to live in the community like everyone else. Open residential services in the community, shut down (תפרק) the institutions, and give people the personal assistance they need as it committed to do in the Treaty.

I, as a person with Disabilities say: Israel is violating the Treaty. And if it's complex/complicated, there are solutions.

Come speak to us and don't send us to a place where you would not want to live.

[Source: A Facebook video]

What follows is my explanation. 

The agreement Tommy refers to is the United Nations Convention on the Rights of Persons with Disabilities, adopted in 2006 and ratified by Israel in in 2012. Chapter 19 is entitled "Living Independently and Being Included in the Community" and includes this:

Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community", including by ensuring that...
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

A leading advocacy group for Israel's people with disabilities, Bizchut, says about this (my translation from their Hebrew) 

Nevertheless, 17,000 people with disabilities still live in institutions (hostels and remote from the community, wherein their right to autonomy and privacy are violated and where they repeatedly suffer severe neglect.

Why is our government deaf to the cries of people with disabilities like Tommy? Why do institutions retain their stranglehold on our politicians and their constituents?

We can only presume that the continued flourishing of this archaic system benefits them in some way.

One such personage, Israel's President, has still not troubled himself to respond to my letter to him criticizing his visit to, and praise of, ADI. Last week, a month after I wrote to him, his chief of staff responded that the data and information I cited in my letter "will be forwarded to President Rivlin for his consideration."

None of the other politicians to whom I wrote regarding their visits to ADI and Aleh bothered to respond at all.