Aleh and Covid-19

I'm receiving streams of clips and messages from well-intentioned folks determined to mine the Covid-19 disaster for uplifting, inspirational lessons. They've transformed its apocalypticism into a celebration.

Then there are those who claim to have pinpointed the specific sin that's the real culprit; the one for which we're all being punished by this pandemic. The one wrong-doing that, if rectified, will miraculously eradicate this whole mess.

And let's not forget the dominant camp, the preachers of "this-is-a-more-meaningful-lifestyle". The ones who insist we needed quarantining to teach us what's truly valuable in this world.

Well, I'm sorry. This simply isn't a blessing in disguise. And those takes on Covid-19 incense me. Too many people are already or will soon suffer in myriad ways from this disaster to paint it as rosy. And too many of us have already suffered enough in pre-Covid times to know full well what matters in life. 

We didn't need a pandemic to teach us that. 

Now onto institutionalization of people with disabilities. If anybody still needed convincing of its evils, Covid-19 has obliged us with another argument against that route.

It has become abundantly clear that residents of large closed facilities are locked into a veritable virus incubator. Children and adults - like our Haya - are always vulnerable to illness and complications but now they are at the mercy of a new threat. They are also undoubtedly at high risk for complications from the virus.

At first, predictably, the unscrupulous Aleh PR team saw fit to use the pandemic to self promote with this post: When Kids Can’t Go On an Outing, Bring the Outing to Them (March 17, 2000). 

Oddly, they themselves conceded that 

"Residents of ALEH Moriah are among the most susceptible population and require careful protection against any possible exposure to the corona virus."

And sure enough, soon afterwards that very branch of Aleh - there are four scattered throughout Israel - was infected. After one of its employees contracted the illness last Friday (March 21), 21 residents and 20 staff members were quarantinded and tested. 

On Sunday March 22, it was disclosed that six residents tested positive. Currently, the 41 residents and employees are quarantined in one of the branch's buildings. The other residents are deemed safe. And remain untested!

Yesterday we learned ["הקורונה הכתה שוב במעון עלה", Gedera Hayom] that in Aleh's branch known as Aleh Negev Nahalat Eran, another employee contracted Covid-19. Consequently 42 residents and tens of staff members have been quarantined. It is not known how many residents of that branch, if any, have the virus.

It is crystal-clear that had our government chosen to hand the funds it channels to Aleh instead to the families of this population, many, if not most, of them would be much safer today. They would be hunkered down at home like everyone else. They would be spared contagion from young asymptomatic staff and volunteers.

Harsh as this will sound, if we, G-d forbid, run short of respirators for those critically ill with the virus and triage is unavoidable, who will be granted that luxury? A person with zero chance for a healthy, normal life afterwards? A person with "multiple, complex disabilities", as Aleh boasts of its residents?

One U.S. parent of a child with severe disabilities blogged that a friend told her:

"...the Powers That Be in Washington have determined that a person with cognitive disabilities will not get a respirator should he or she or they need one. I said, We know that already. We is us. We know about the rationing of care."

Lest you surmise that the Aleh's operators have been chastened by this situation, here's this to rectify that misconception. Once again, they've enlisted their PR hacks to put the catastrophe to good financial use!!

"Though our ALEH residents are being distanced from the public to safeguard their health, it is essential that they never feel alone. Donate Now" ["BREAKING: Coronavirus Threatens Disability Community in the Negev", Aleh website, March 25, 2020; archived here]

Of course, they are always distanced from the public. But not to "safeguard their health".

Can we stop idealizing institutions for people with disabilities?

Deep in the desert: Aleh Negev

(A version of this article under the title "Let's stop idealizing institutions for people with disabilities" was first published by Times of Israel [here] on March 6, 2020. Some broken links in that published piece are fixed below.)

It was with deep dismay that I read the op-ed “An Oasis of Caring in the Desert” [New York Jewish Week, February 12, 2010], in which Michal Divon describes her week of volunteering at Aleh Negev, a large, closed and isolated institution housing 220 children and adults with disabilities. It is part of a larger chain of Israeli Aleh institutions.

February marked Jewish Disabilities Awareness, Acceptance and Inclusion Month (JDAAIM) so the world of disability is indeed a timely topic.

But does Divon’s piece advance the cause of inclusion and integration of people with disabilities in our communities? Not likely. Rather it produces the same smoke that Aleh, the largest such chain in Israel, routinely blows in the public’s eyes.

Aleh’s PR team is a slick operation that turns hypocrisy into the sort of hype that resonates with a large contingent of Jewish society. It posits that Aleh’s enterprise is “the ideal” solution. Or the embodiment of “inclusion” in the community. Or just like “a real family”. (Those quotes can be found here, here and here in Aleh’s marketing materials.)

Aleh-style institutions have been shut down throughout the developed world – and in some under-developed countries as well. Yet Israel has gone the other way. Here, such enterprises remain full, well-funded and thriving.

In those countries, the residents of such institutions have been moved – in most cases years or even decades ago – to more humane living alternatives. These include their own families, foster homes or small-scale hostels within the community.

It would behoove a publication like the Jewish Week to delve into the issue and examine it more comprehensively. Perhaps a meeting with Bizchut activists would have dampened Divon’s enthusiasm for Aleh. Bizchut is Israel’s leading advocacy organization for the rights of people with disabilities. It has adopted as one of its three goals “the passage of legislation based on every person with disabilities having the right to live in the community with the assistance that he needs”.

Here is the first of Bizchut’s five core values as listed on its website:

“Independent Living – Promoting the right to live in the community and receive personalized services. Bizchut pursues this goal by exposing the violation of rights inside institutions and calling for a transition from institutionalization to independent living. Bizchut is also promoting legislation that will establish the right of every person with a disability to live independently in the community.”

On the other hand, Aleh’s core values clash head on with mainstream views of care for citizens with disabilities.

A report from the Israeli parliament's Center for Research and Information [Hebrew] presented to the Knesset's Committee for the Rights of Children in May 2019 found that in 2017 (the most recent Israeli data available), 2,740 children with disabilities lived in some kind of out-of-home arrangement. They included hostels, apartments, foster families and assisted living. About half of those children, 1,305, were stuck in institutions, a.k.a. “dormitories”. Only 646 were in foster care.

Following the sudden death in July 2019 of a 29 year old resident, Effie Ben Baruch, at a Haifa institution for people with disabilities, Naama Lerner, Bizchut’s Director of Community Outreach, circulated the following article. (The Hebrew source appeared August 21, 2019, written by Galit Edut is here - the translation from Hebrew is mine.)

Scandinavian states were the first to close such residences for people with cognitive developmental disabilities, in the 1970’s. Both New Zealand and Canada have since done the same. In the US, two thirds have already been shuttered and even in Bulgaria, a less western country, legislation has been passed mandating the closure of all such institutions by 2024 and the transfer of residents to in-community living with personal assistance.
In Israel, the Bizchut organization has been leading the demand for the closure of institutions, which has been ignored for many years. Only in 2011 did the Ministry of Welfare invite five international experts to draft a literature review of the transfer from dormitory residences to in-community living.
“Research findings demonstrate a clear picture: community services are more beneficial than institutional living for the totality of people with cognitive developmental disabilities”, they stated.
The request for a literature review arrived four years after Israel signed the UN Treaty for the Rights of People with Disabilities wherein paragraph 19 determines that “The State must ensure that people with disabilities will be able to choose where and with whom they live as any person is free to choose and that they will not be forced to live in a specific living arrangement.” [Translated by me from the Hebrew source]

Unfortunately, many Aleh supporters, donors and well-intentioned volunteers like Divon are unaware of the above information. They have internalized Aleh’s disingenuous PR and are convinced that, as Divon’s op-ed claimed, isolating people with disabilities in large, closed institutions “reinforces them as equals” and embodies their “inclusion” in mainstream society.

Sadly, that op-ed helps further entrench institutionalization. Instead, we need greater awareness of the fact that Israel’s generous subsidies for such places mean minimal funding for the truly inclusive alternatives.

As Aleh’s own marketing material reveals, the lion’s share of its operating budget, 85%, comes from government sources. In other words, Israeli taxpayers. Like me.

Do Divon and donors realize their support is a drop in the bucket relative to Aleh’s government resources?

As the mother of a 24 year old daughter, Haya, who is profoundly disabled, I am personally affected by Aleh’s operations. My child is left with precious little by way of government assistance in order for her to live at home with her family. When she aged out of the educational system at 21, several teachers at her school for the blind and multiply handicapped were surprised to learn that my husband and I wanted her living with us. They presumed we would institutionalize her, perhaps at one of Aleh’s facilities.

Because that’s what’s available. There are really few viable options and certainly none that would provide her with the benefits that living with a loving family does.

Aleh Negev is indeed “in the desert” as Divon says. But it is more ogre than oasis.

Haya's Super Tuesday results

Well, we had our own Super Tuesday yesterday right here.

First, a miraculous visit to the neurologist. On Sunday, after countless phone calls to the doctor's secretary and receptionist over six weeks, we finally scored an appointment. She's that very senior and popular neurologist to whom we brought Haya in August 2019. 

Subsequent to that first visit, on that doctor's advice, we tried adding Phenytoin to the Vimpat, Keppra and medicinal cannabis which Haya already receives. After only ten days, it proved disastrous - read: oodles of additional seizures. We promptly stopped it, also on that doctor's advice.

 
Since then, the only change we've made has been independently adding Curcumin supplements. They seem useless. We've observed no changes in her condition whatsoever.

Now here's what today's visit - at which only my husband was present - yielded:

• Doctor recommends trying the ketogenic diet. I'm wary of that. It was such a nightmarish 10 months when we last did that some twenty years ago. But the doctor assures us that nowadays we'll have a qualified professional dietician guiding us and Haya should not end up vomiting incessantly from all the fat - as she did twenty years ago when no neurologist or dietician in this region had a clue about the diet. So we'll see about that option. I recall reading that it isn't terribly effective with SCN2A patients.
• The doctor will be administering a 24 hour Video EEG in the near future. We await a date. One hurdle here is getting the head nurse in the pediatric ward to admit Haya despite her being nearly 25. Since our doctor is a pediatric neurologist, Haya must be in that ward.
• The doctor found my video clips of Haya's seizures and twitching - which Haya obliged me with the morning of our appointment - to be very helpful. You're welcome to view them below.
• The doctor told us that both of the meds we've read about as unorthodox treatments for SCN2A epilepsy - Lidocaine and Mexiletine - are unavailable here in Israel. But she said she would inquire about Mexiletine and is agreeable to trying it with Haya.
• She isn't a proponent of cannabis for epilepsy claiming there are no reliable studies to back that up. She only recommends Epidiolex, the first cannabis-based medication approved by the US Food and Drug Administration. While it's been available by prescription in all 50 states since 2018, it's not available yet in Israel.. 

Super Tuesday also had Haya doing hydrotherapy and flipping herself over several time of her own accord. Usually, I initiate the flipping. But yesterday she proved to be a flipping enthusiast - I had no idea she actually enjoys it so much.

Here she is at the start of one:

And then at night it was on to the assisted walking I am scrupulous about. Here we are plodding away, as we do for 45 minutes: