Deinstitutionalization, Aleh and ADI

Mandy Leighton Bellichach is the Chair of Bizchut's Board
[Image Source]

Bizchut, the leading organization devoted to promoting the rights of people who have disabilities in Israel, sent out a mailer this week emphasizing its focus on deinstitutionalization. Music to my ears!

Their message ended with this:

We help people and their families handle the many bumps on the road from the institution to a life of dignity and equality in the community. In the year 2021, Bizchut's goal will be to double and even treble the number of  people with disabilities who will receive assistance to live - like everyone else - within the community... [Hebrew original - my translation]

Now juxtapose that with the two large institutions, the places formerly called Aleh Negev and Aleh Jerusalem, both now renamed ADI which Doron Almog now heads. 

He is expending great efforts to promote and fundraise for them. He has dwarfed Aleh which, as I've written earlier, now consists of only the Gedera and the Bnei Brak branches and is lagging woefully behind in its PR. 

With Rabbi Yehuda Marmorstein at its helm, Aleh's Facebook page has for the past five days sported a link to its purported website. But when one clicks on it, the ADI website comes up.

Here's hoping this "battle" for our children and young adults with disabilities results in a victory for neither of the combatants but rather for Bizchut and deinstitutionalization.

Is institutional care really the same as home, love, family?

Haya floating unaided in the pool 

I just discovered

Here are a couple of very recent Aleh posts I have just come across:

“This village [Aleh Negev - the Ofakim branch] was established with the express purpose of breaking the mold. The world needed a change—a place that would actually serve the community while also serving as a model of diversity and acceptance,” says Maj. Gen. (Res.) Doron Almog of the Israel Defense Forces and the chairman of ALEH Negev-Nahalat Eran." ["Plans for expanded village at ALEH in works, plus neuro-orthopedic hospital", JNS/Eli Klein, August 11, 2020]

And the following day:

"This is why we work so hard to protect and empower our ALEH residents with severe disabilities. This picture conveys so much more than a thousand words... but we'll highlight a few: Home. Love. Family". [Aleh on its Facebook page]

I need some help here. Can someone please explain to me how taking a child away from his home and family to live in a large institution connotes "Home, Love, Family"?

How does the practice of institutionalizing children serve "as a model of diversity and acceptance"?

Of course, I doubt anybody could ever convince me of that.

But one claim made above is accurate: Aleh truly does "break the mold" to paraphrase its PR team. "The mold" being life with a family. "The mold" being life within the community. "The mold" being services provided to people with disabilities in their home or in adoptive/foster homes. "The mold" being the path of the developed world. 

Yes, Aleh, does break that magnificent mold. And what a sad fact that is.

The State of Israel stands alone as it not only promotes, supports and finances these large institutions but pays visit after visit - physically - to those very buildings. Various government ministers have trekked over to Aleh branches, providing much publicized photo ops and laudatory quotes about the institutionalization of Israel's children and youth who have disabilities.

Meanwhile, we who love our children and want them with us are struggling. We are particularly challenged now, during the Covid era, when my daughter Haya's few pleasures have been curtailed.

Fortunately, though, this week we succeeded in returning her to that favorite activity - hydrotherapy. We found a small, local pool -  6 x 10 meters - which can be rented by the hour. 

After five months on dry land, I feared that she would have forgotten how to float on her back independently. That, of course, was her one and only skill.

We were thrilled to see that she remembered it well, relaxed as she used to, even stopped seizing - as you can see in the photo above.

I'm still awaiting word from the Ministry of Welfare which is concealing statistics re the impact of Covid-19 on residents of the closed institutions. It has yet to release details of where the ill and deceased residents were living despite my request for that information under the Freedom of Information Law 3 weeks ago!

They maintain that they are obligated to respond within one month.

Dealing with cluelessness

Screen capture from the published Aleh video clip

I never cease to be amazed by the utter cluelessness of our decision-makers about the needs of people with disabilities.

Yesterday, our State Comptroller, Matanya Engelman, visited the Aleh branch in Ofakim, Aleh Negev. He donned the standard "blinders" that Israel's leaders persist in wearing when assessing the lives of our most vulnerable.

Consequently, the risks and suffering entailed in housing large numbers of children and young adults with disabilities in large, closed facilities eluded him.

He is patently unaware of the global move to transfer that population to families within the community in the rest of the developed world [see "The case for de-institutionalization in the COVID-19 era"]

These were the parting words of praise that he wrote in the Aleh Negev guest book:

"Blessings from the bottom of my heart for your impressive, empowering work for the good of the population of people with disabilities in the Negev. With your blessed achievements you constitute a model for the rest of Israel's society. Be blessed and expand your activities. I consider it important to tend to the needs of the population with disabilities, especially in the perphery. We in the Comptroller's office focus on these aspects of society in order to be the ears and eyes for those populations deserving of advancement."

This uninformed attitude towards people who desperately need government intervention is disconcerting, to put it mildly. This is especially true now, in the midst of the Covid 19 pandemic.

In stark contrast, here is a Facebook post of People With Disability Australia dated August 1, 2020:

The spread of the COVID-19 in congregate living situations like aged care facilities, and now in a Melbourne group home, really emphasises the need for people with disability to be supported to live independently.
People who live in group homes often do not get to choose where they live, who they live with, how many people they live with, or who is assigned to support them.
Social distancing is much more difficult in congregate living situations with a lot of people coming and going, including staff, visitors and residents. This is a public health concern for everyone involved.
People with disability have been identified as particularly “vulnerable” to this potentially deadly illness. If only we all had the freedom to decide who, and how many people, we have contact with in our own homes.
We have made a submission to the Disability Royal Commission regarding the need to end group homes. You can find it here.

You can observe the conditions of Aleh Negev's residents in a video clip which the Aleh PR team considered worthy of circulation.

Remember this is a scene which was not concealed because of the crowding, dearth of staff, absence of social distancing or lack of stimulation. Rather, it was proudly posted on Aleh's Facebook page several days ago - online here. The relevant scenes are at 0:06, 0:07, 0:18

Meanwhile I have lodged an official request with Israel's Agency for Freedom of Information for the segmentation-by-institution of the COVID-19 data I received from the Ministry of Labor and Welfare recently and that I published in my July 29, 2020 post [here].

Hoping that I can share that with you soon.

Will COVID-19 hasten the end of institutionalization?

My daughter Haya at home this afternoon

This week, Aleh, Israel's leading chain of large, closed institutions for people with disabilities honored a donor from England who passed away in June. She had been eulogized on Aleh's website.

To mark the end of the shloshim period - the 30 days of mourning after passing - she was memorialized with a garden by Major General (Res.) Doron Almog. Almog is credited with establishing Aleh Negev, one of the four branches of the Aleh enterprise.

The donor's work for Aleh was described on its website as "promoting the care and inclusion of people with special needs".

As I have been endeavoring to explain for years now ("Institutions: The world goes one way, Israel and Aleh the other" as just one example), locking children and adults in institutions in no way promotes inclusion. 

The damage done by institutionalization is now acknowledged everywhere in the First World - excluding Israel.

It is striking that the resident of Aleh Gedera, another Aleh branch, who passed away from Covid 19 in April ["Following a Covid-19 death at Aleh, a troubling silence"] has never merited so much as a fleeting mention, let alone a eulogy or a memorial garden on Aleh's website or its Facebook site.

In these dystopian times, it would be appropriate for Israel to finally reassess its policies for care of children and young adults with disabilities.

Institutional living has long been maligned by professionals as detrimental to the well-being of its residents. Emotionally, cognitively and physically it is, all agree, the worst of all living options. It still flourishes only in one developed country: Israel.

There are myriad explanations for that anomaly but one crucial one is the entrenchment in Israel's psyche enjoyed by Aleh, it major chain of large, enclosed institutions. Remember, the residents of those institutions are at high risk for becoming seriously ill with Covid 19 by dint of their disabilities alone. 

The following conditions are cited by the United States' CDC - The Centers for Disease Control and Prevention - in its long list of endangering pre-conditions:

Children who are medically complex, who have neurologic, genetic, metabolic conditions, or who have congenital heart disease are at higher risk for severe illness from COVID-19 than other children.

Below are the statistics that I received from Israel's Ministry of Labor, Social Affairs and Social Services (משרד העבודה, הרווחה והשירותים החברתיים) on June 22, 2020 in response to my questions regarding residents of institutions for children and adults with disabilities within its purview (that includes the Aleh facilities):

In the 37 living settings under the supervision of the Disabilities Unit of the Ministry of Labor and Welfare, there were those who were quarantined or ill. Currently, 6 facilities are quarantined. 1,037 residents have been quarantined since the outbreak of Corona - today 91 residents are quarantined. In all, 37 staff members and 87 residents were diagnosed as ill. Today 8 residnts are ill. These statistics refer to all the settings in our purview.

With alarming numbers like these, and the obvious risks inherent in housing high-risk populations in close, closed quarters, I would have expected this government to rethink its policies towards people with disabilities.

Now is the time to finally play catch-up with the rest of the developed world and promote in-community living for all people with disabilities.

Instead, we only see Aleh using this pandemic to self-promote and solicit donations with heightened intensity. The government, needless to say, continues to fund Aleh and other large, closed institutions with the same largesse it always has.

But not everybody has remained mum. Below is a letter penned by a citizen with severe disabilities that has been circulating in recent days among disabilities activists. Anybody with disabilities or parents of those with disabilities is invited to co-sign it. Please contact me if you are interested in doing so.

[Note: the following is my translation of the Hebrew original]

Itzik Shmuli
Minister of Labor and Welfare
Subject: Request for a meeting to promote in-community living for people with disabilities
Shalom,
First of all warm congratulations on your new government position. My name is Tommy Barchenko, 23 years old. I have complex physical disabilities I am mobile in a wheelchair and communicate via a communication computer. I am a social activist on behalf of the civil rights of people with disabilities primarily in the areas of accessibility and welfare. I turn to you, along with another group of young people with disabilities requesting a meeting with you, about the topic of people with disabilities in Israel and in particular in-community living.
We wish to live independently within the community enabled by the provision of support services and a personal assistance basket. Within the community and not in assisted living (i.e. closed, group setting).
And we request that the funding earmarked per individual for assisted living be channeled to us so each of us can acquire the services and assistance and the support and the therapies according to his individual needs within the community.
According to our world outlook, living accommodations for people in the State of Israel are not correct and on a daily basis violate basic human rights.
In hostels for people with disabilities operated by the Ministry of Welfare, there is a serious violation of human rights and we have witnessed incidents of very severe abuse and even death in a number of hostels.
And together with you we want to change this and bring a better future for people with disabilities.
We think that we can work together with you to get to a better place.
We would like to meet with you and discuss these things.
We would be happy if you would answer positively.
With thanks and good wishes,
Tommy Barchenko
Tomer Isaac
Martin Zhorbalov

The photo at the top of this post shows my daughter Haya practicing her switch-pushing skills at home today and listening to the music she loves.

An Aleh update

There has still been absolutely no public mention anywhere by anyone connected to Aleh of the resident who passed away of Covid-19 back in mid-April ["Following a Covid-19 death at Aleh, a troubling silence"].

Likewise there has been no news about the five Aleh residents who were hospitalized then with the virus.

The release from hospital of four other residents several weeks ago was, predictably, announced on the Aleh Facebook page with characteristic fanfare.

Will we ever learn what became of those forgotten five?

On sophistry and silence

Aleh Negev announced the resumption of visits to its institutionalized children after a hiatus of some two months.

In a Facebook post preposterously entitled "Family Above All", its PR cronies described the reactions of the children as "very emotional.

The mother of one of the residents at the village (a favored Aleh euphemism) described [here] the encounter as

the most impactful she had ever experienced with her son, one which stirred many emotions in these times. We realize that a hug from a mother and father, sister or brother, is very significant and has no substitute" (my emphasis, and my Hebrew-to-English translation). 

Really?!

Is that why Aleh encourages parents to abandon their children with disabilities? To entrust them to the care of strangers in its institutions? Is that why Aleh sucks government coffers dry for financial support instead of enabling parents to receive it for care at home?

Once again, Aleh's duplicity and hypocrisy know no bounds.

Note: To date, Aleh has not aknowledged, expressed grief, or eulogized the resident who contracted Covid-19 at its Gedera branch and who passed away in mid-April [see "Following a Covid-19 death at Aleh, a troubling silence"]. On the other hand, it has eulogized on its website [here] an elderly British donor who succumbed to the virus.

The silence speaks volumes.

To Aleh: Time for transparency

The death of a 41 year old woman living at Aleh Gedera ["Following a Covid-19 death at Aleh, a troubling silence"] was reported on April 14. Nevertheless, there is still no acknowledgement anywhere on the Aleh sites or Facebook pages of her passing. She was one of the youngest of Israel's victims of the virus.

Despite studiously ignoring that tragedy, Aleh's PR hacks have utilized Covid 19 to the hilt for its fundraising activities.

Aleh staged a lavish welcoming splash - Israeli flags lined the streets, music blared from a van - to greet the return of four other residents who had been hospitalized for weeks with Covid-19. 

On April 14, the news services reported that nine Aleh residents were hospitalized in several hospitals. What is the current condition of the remaining five? Aleh has not shared that information with the public.

This obfuscation on the part of Aleh, Israel's largest chain of closed institutions for people with disabilities is beyond objectionable. It is the height of insensitivity and callousness towards its vulnerable, helpless population, many of whom are babies and children.

This attitude is coupled with a freewheeling approach toward utilizing its healthy residents for photo ops. So on Yom Hashoa, numerous photos of "commemoration" of the day in Aleh institutions were posted on its sites. 

As the mother of a 25 year old daughter with profound and complex disabilities, I can assure you that not one of the residents pictured grasped the significance of the day in any sense! The photos made a mockery of Yom Hashoa by mining it for financial gain.

As a bereaved mother whose child was murdered in the terror bombing of Sbarro in 2001, I dread seeing how Aleh's heartless PR team will cash in on Yom Hazikaron next week. But I have little doubt that is just what they intend to do.

Following a Covid-19 death at Aleh, a troubling silence

Children in a video clip posted by Aleh [Source]

It is a tragedy - but not a surprising one.

The population of Aleh's several institutions, totaling at their count over 850 children and young adults, are inherently high-risk for contracting Covid-19. Aleh's administration itself describes them as having "complex disabilities" and as being "at high risk for succombing to the virus".

Here is what Forbes magazine wrote about this segment of society:

"The people most often cited as being at serious risk are largely, by some definition, people with disabilities. While simply having a disability probably doesn’t by itself put someone at higher risk from coronavirus, many disabled people do have specific disabilities or chronic conditions that make the illness more dangerous for them." [Source]

When these individuals are congregated in large, confined groups and with rotating caregivers, they are obviously placed at even higher risk for the virus. 

That risk then rises exponentially when youths are invited into those large, closed institutions to replace regular staff members - as Doron Almog boasts of having done [in this Hebrew-language Ynet interview], 

As we are all now aware (perhaps excluding Almog), those untrained teenage volunteers could be asymptomatically infected, highly contagious and therefore capable of spreading the virus to their vulnerable charges!

Despite reports of three separate outbreaks of Covid-19 within Aleh's walls (two in Aleh Negev and one in Aleh Gedera), there have been no updates about the conditions of the ill Aleh residents from Aleh itself. 

After boasting about the exemplary sanitization operations at Aleh and of his success in enlisting those scores of volunteers, untrained 17 year olds to care for our most vulnerable citizens, Almog has gone inexplicably mum.

He hasn't even conceded that his promise on March 25 to set up a hospital for Covid-19 patients in Israel's south within one week was utter nonsense [here - and archived here].

On April 14, we learned from a single news report that a 41 year old Aleh resident passed away of Covid-19. The news source (my  translation from the original Hebrew) added: 

"After all residents of the institutions were tested at the request of the Aleh chain it emerged that more than one fifth of the residents, 26 out of 117, are sick with Corona. Nine of those are still hospitalized in hospitals throughout the country, 12 have been transferred for treatment for mild Corona within the welfare framework and four recovered in the hospital and have returned to the instituion. Ten staff members were also infected with the virus." [Source: Ynet] 

Meanwhile for Aleh's PR team, it is business as usual. Its sites and Facebook page sport their routine, inane "feel good" photos and video clips intended to inspire in its supporters compassion, guilt and, naturally, a reach for the wallet. 

And these days, Covid-19 is utilized to heighten what Aleh calls its urgent need for donations: "When Kids Can’t Go On an Outing, Bring the Outing to Them (March 17, 2000)".

As recently as several hours ago, the Aleh Facebook page posted a clip [here] about the home garden of one its staff members! After that it was photos [here] of Mimouna "fun" at Aleh Jerusalem. 

The catastrophe of Covid-19 is teaching us myriad crucial lessons about how we have conducted our lives. But will those include one regarding the lives of people with disabilities? 

Will Israel finally acknowledge the fact that these citizens need a better, safer, more loving and more inclusive environment than is offered them in large, closed institutions like Aleh's?

Will our government finally resist the pressures exerted upon it to provide nearly all of Aleh's annual funding?

It is high time our leaders joined the rest of the developed world in shuttering up those institutions and re-directing that money to caring for those citizens in the settings they deserve: in their families' homes, in adoptive homes or in small in-community group homes.

Let's hope Covid-19 will be the wake-up call that our abandoned children with disabilities have so desperately awaited?

No news is NOT good news

For background, click here to review my previous post

While the public has heard no news about the conditions of ill residents at two branches (Aleh Gedera and Aleh Negev) of Aleh's four large closed institutions, we did learn of yet another Covid-19 outbreak there. 

This time it was the intensive care unit at Aleh Negev where a nurse tested postitive. The worrisome announcement was,predictably, given a postitive spin on Aleh's website with lines like these: 

"During the evacuation from the ward, the ALEH staff and volunteers took the youngest residents – babies and toddlers – to the playground to alleviate their anxiety and keep them calm. Testing is ongoing and will take longer than usual due to the fact that so many of the ward’s residents are very young and require consistent intensive care. Following the testing, the residents and staff members will be quarantined in the newly sterilized ward until the results are analyzed and any additional infected individuals are identified." [Source: Aleh]

Needless to say, that should be alarming. 

Those children need not have been enclosed in such a dangerous setting; a large, isolated institution. Residents are in close contact with each other and with the many staff members, rendering it a petri dish for the Covid-19 virus. 

With government funding, many if not most of these children would have been living where they belonged: With their own or an adoptive family!

In addition, there has been no news about the brand-new hospital that Aleh's spokesman, Doron Almog, promised us. Two weeks ago he stated unequivocally (as I posted here) that Aleh committed to constructing one in the Negev within one week. To date, nothing of the sort has materialized. 

No big shock. Vacuous, hyperbolic statements are an Aleh trademark.

Bizchut, the leading advocacy organization for people with disabilities in Israel, has embarked on a campaign to win visitation rights for parents of children locked up in institutions like Aleh. During the scourge of Covid 19, most have been barred from seeing and comforting their anxious children.

In its recent circular, Bizchut wrote:

"Institutions and hostels have announced they are no longer allowing visitors. No-one can enter and no-one can leave. This, despite the fact that for many persons with disabilities, interaction with relatives is essential to their mental and sometimes physical well-being. We also know that in some of these facilities instances of neglect and abuse have been exposed. With the reduction in external staff going in and out, relatives are the only people who can observe and report on what is going on behind the walls of these isolated facilities" [Soure]

Learn more about what has been occuring in large, closed institutions for people with disabnilities since the Covid 19 outbreak [see Institutions and some viral lessons not yet learned]