Thinking of Canada

Chaya was rushed to hospital by ambulance this week
[Illustrative image from Shaarei Zedek's website]

We have been weathering an overwhelmingly difficult period with our youngest child, Chaya.

Then, just to stir things up a bit, my heart decided to "break" on me: I was hospitalized with Broken Heart Syndrome, a.k.a. Takotsubo Syndrome a.k.a. Stress Cardiomyopathy.

But after I’d returned home, thank G-d on the mend, Chaya decided to spice things up again with uncontrolled seizures rendering her unable to swallow either food or water. My husband rushed with her by ambulance to the ER. Throughout the 24 hours that Chaya spent in the aisles of the ER, my husband sat glued to a chair beside her.

After receiving IV fluids, she was launched on two new meds which we hope will improve her seizure and liver problems – Keppra and Prednisone. Perhaps they’ll also enable her to retrieve those minimal skills she’d acquired over many years – feeding herself and walking with assistance – which have entirely evaporated in the past week.

Our quest for some help at home is dragging on so we are still caring for Chaya ourselves while I try to sandwich in a bit of  recovery from my unexpected coronary event. “The system” (i.e. Ministry of Welfare and National Insturance) washes its hands of parents who opt to keep their children at home despite disability and illness (as I described in "Aleh 101" a year ago). “How dare you reject institutions like Aleh!” is basically the message.

Thus it was with particular disappointment that I encountered yet another PR plug for Aleh's chain of institutions. Dated December 23, 2016, it appeared in the local daily, Yisrael Hayom, a known mouthpiece for Prime Minister Netanyahu. Purportedly penned by a Canadian pediatrician, Dr. Lynn Hierlihy, it spouted the customary Aleh hype. But because it was a medical professional this time advocating the institutionalization of our most needy children, I was especially incensed.

Her blog post [here] first sang the praises of volunteering:

Volunteers are critical partners in the growth and development of society... And while these individuals are no doubt selfless, they will often admit to a single "selfish" motive: Volunteering makes them feel incredible. Numerous scientific studies have proved that volunteering reduces stress and improves physical and mental health.

She elaborated on the topic and I have no gripes about that. True, I have rarely found volunteers very helpful in caring for Chaya and much prefer professional input for people with profound disabilities. But, fair enough, she made an innocent point.

Afterwards, though, she segued to a florid profile of Aleh. I would have expected a pediatrician to appreciate the crucial role that a family and its love play in a child’s healthy development. And I mean all children – including those with disabilities. But apparently this one doesn’t.  To hear one instead extolling the virtues of closed institutions is baffling.

Here is her paean to Aleh:

Needless to say, our visit to ALEH Negev-Nahalat Eran was magical. Never before had I seen a rehabilitation or long-term care facility that so clearly exemplified how "the world is built on loving kindness." I fell in love with the children and their dedicated caretakers, and I embarked on a mission to raise awareness about ALEH upon my return home. I now do everything in my power to connect our community in Canada to the ALEH family. When my son celebrated his bar mitzvah, he requested that guests make donations to ALEH in lieu of gifts. Our synagogue has established an ongoing relationship with the organization, which I coordinate, to ensure that we continually give back to our newfound Israeli family in any way we can. And I take every opportunity to visit ALEH and lend a hand.

Dr. Hierlihy’s blog post is particularly confusing coming as it does from an Ontarian. Canada deinstitutionalized its care for people with disabilities several years ago. In the Spring 2009 (Vol. 28, No. 1) edition of  the Canadian Journal of Community Mental Health [here], we read that:

Ontario has recently closed its last 3 institutions for persons with developmental disabilities. Very little research has been conducted on Canadian deinstitutionalization projects, and the impacts and bona fides of such endeavours have not been well documented in Canada. However, the closing of institutions has occurred in most Western jurisdictions and has been the subject of much research in Australia, the United Kingdom, and the United States. Although community services are of variable quality, this literature review suggests that the Ontario plan to close institutional facilities in favour of community-based residential services will be of general benefit to former institutional residents.

That CJCMH article concluded that

Very simply, the institution cannot replace the community in providing individuals—including those with developmental and serious psychiatric disabilities—with the opportunities for the good life. There are no compelling client-related arguments left for keeping people with cognitive limitations, and possibly people with psychiatric disabilities, away from their families and communities.

Don’t Israelis with disabilities deserve the same compassion, the same dignity, the same loving care within their family and community as do Canadians, Dr. Hierlihy?

Not a Dickensian tale

The Neve Ha'irus institution [Image Source]

This is reality for some people with disabilities in Israel of 2016.

Bizchut, the Israel Human Rights Center for People with Disabilities, has released the following summary of an unannounced visit last Thursday by the director of its Community Outreach Department, Naama Lerner, together with Knesset Member Ilan Gilon, to a closed institution for people with cognitive disabilities, Neve Ha'irus, in Nes Ziona. 

They were responding to a series of serious complaints from parents of residents and from past employees at Neve Ha'irus that Bizchut had received about that institution.

There they say they encountered many disturbing sights that included extreme physical and emotional neglect. Some of the shocking findings they reported:

• Residents locked into their dormitories without any activities.
• Bedrooms bare of personal cupboards or personal clothing. Some beds have boxes underneath them containing all of the resident’s personal possessions.
• Some of the beds lacked any bedding or winter blankets.
• In some of the dormitories,  the kitchen and bedrooms are locked, barring residents from entering their own rooms when they seek a bit of privacy.
• The handles of bedroom doors have been removed to prevent the residents from entering their rooms. Each staff member carries a handle in his pocket which he inserts into the door when he needs to open it.
• Signs of rampant neglect including spider webs.
• The absence of any books, games or computers. Residents roam around to and fro with doing nothing to do. A very difficult sight to behold: people are erased, robbed of their identity.

The homepage of the Neve Ha'irus website says the institution, established in 1957, has been under the full supervision of the Ministry of Welfare since 1985.

The original Hebrew text of the Bizchut announcement (posted here) goes on to say:

It was recently reported to Bizchut that, three weeks before, the dead body of a resident had been removed from the premises. When we arrived there to investigate, we happened to find an intensive-care ambulance standing at the institution’s entrance, preparing to rush to hospital another resident in a state of hypothermia.

This facility, intended to serve as home to 130 people, must not be tolerated. It is not located in some isolated spot but rather in the very center of the country, in Nes Ziona. The conditions there should not be permitted to exist in today’s State of Israel.

We demand that the Ministry of Welfare:

1. Immediately close Neve Ha’irus and transfer its residents to appropriate settings within the community.
2. Appoint an outside, independent body (an ombudsman) that will review the complaints lodged so as to ensure that the voices of the residents of closed institutions are heard and that abuses such as these are eliminated.
3. Investigate the deaths that have occurred in the past year at Neve Ha’irus and ascertain the reasons behind the hospitalizations of residents.

If you would like to join our effort, please contact Naama Lerner at Bizchut at naamalerner@bizchut.org.il or by phone 052-856-6219. Please leave a message and we will get back to you.

Back to hospital, this time as a patient

My body found a way to halt that downward spiral I was in.

Overwhelmed by my impending surgery (for severe POPS) along with my daughter Chaya's new medical crisis, I sensed impending implosion - the emotional variety.

My conversations were peppered with "I can't go on", "I'm going to have a breakdown", "I need help" rolling off my lips all day long. But certainly nothing that would land me in hospital.

Yet Friday night I developed weird symptoms - extreme weakness, nausea, vomiting and low blood pressure - and reluctantly took an ambulance to the emergency room, accompanied by one of my daughters.

When blood test results arrived and the doctor declared "You've had a cardiac event", I was  blown away and frightened. A diagnosis more like virus/dehydration was what I'd expected. "When could I possibly have had one?" I asked him incredulously.

After an angiogram which, thank G-d, didn't find any blocked  arteries, the cardiologists settled on the likelihood of Takotsubo Syndrome.

If you ever feel the urge to for a cardiac event, this is definitely the one to choose. But, sorry guys, it's overwhelmingly a post-menopausal women's condition.

For those of you female caregivers desperate for relief, relief, here's some more info about this relatively newly-categorized syndrome, only recognized in Japan since 1990 and in the West since 1998).

And for you over-stressed men, we'll see what my husband comes up with. He's been single-handedly caring for both Chaya and home as well as visiting me.

In the meantime, Chaya, treated with CBD alone, is still keeping her seizure rate low - but don't forget to keep that strictly under wraps. (Can't be too wary of that seizure-jinx!)

My husband also succeeded in eliciting a great sodium and potassium reading from Chaya in her latest blood test results so her dehydration is behind us. And while she's definitely not out of the gaunt range yet, the thin bulging vein on her jaw is now invisible. That leaves us with her liver and hematological issues to contend with. Our next appointment with the liver specialist on Sunday

I'm looking forward to having  her stand/walk and put the spoon independently in her mouth  again -   activities that have been deleted from her routine during my absence.

Takotsuba is apparently can recur - so we must somehow alter our home situation to prevent that. Consequently we've been desperately trying to contact the government where the social worker handling our daughter's case purportedly works. The hospital social worker told us that woman is the only key to any sort of government care assistance for Chaya's home care.

Were we to drive down to our local Aleh branch and deposit our daughter at the door, there is little doubt we would be treated to what their website calls "a break from the 24/7 attention require to care for them appropriately".

But because we are determined to keep our Chaya at home with us, we are rewarded by our so called "welfare state" with persistent and studious disregard.

Can Aleh get its prisoners story straight?

The caption on the original reads: "The prisoners shed their uniforms
before arriving at ALEH to volunteer." [Image Source]

Aleh Negev's so-called Prisoner Rehabilitation Program really should be dismantled. Yesterday. It is just one of several problematic activities at Aleh that our government is generously subsidizing i.e. with your taxes and mine.

For instance, Aleh's PR professionals circulated two conflicting descriptions of the prisoners' recognizability on the grounds of Aleh Negev. 26 of them are released there three times a week in civilian clothes in order to mingle with the most vulnerable of all Israelis.

How does that pan out? It depends on which Aleh PR release you choose to believe. For instance, one piece claims those prisoners merge seamlessly with everyone else there:

"Dressed in regular clothing, the inmates look like the village rehabilitation workers or regular volunteers at the village and the residents cannot differentiate." [Source: Huffington Post]

Needlessly to say, this is a dangerous situation. Prison garb is designed to protect the public by rendering prisoners easily detectable. Here is Wikipedia on the topic:

"A prison uniform serves the purpose to make prisoners instantly identifiable, to limit risks through concealed objects and to prevent injuries through undesignated clothing objects. It can also spoil attempts of escape as prison uniforms typically use a design and color scheme that is easily noticed and identified even at a greater distance." 

But then there is another Aleh PR release that asserts the precise opposite:

"Though the inmates don’t stick out for their attire, they are distinctive among most of ALEH-Negev’s other 180 volunteers because they are male. “Most of our volunteers are female, as is our staff,” says Sekely. This is a wonderful way to rehabilitate prisoners,” says ALEH-Negev CEO Masada Sekely." [Israel 21C]

But before you buy that line, factor in the following, again, disseminated by Aleh's PR team:

Simon Weststeijn is the first member of ALEH’s administrative staff to arrive every morning and one of the last to leave every evening.  As the point person for all international volunteers for ALEH, Israel’s foremost network of state-of-the-art [etc] ...The most remarkable thing about this savvy and passionate volunteer coordinator is that he, too, is a volunteer... [Source]

There is a photograph on the Aleh website [see it here] showing a group of "special and dedicated volunteers" who pose with Simon. I'm no mathematician but I count five out of twelve male volunteers here.

I have a hunch that somebody at Aleh is reading my blog because in January 2016 - after I had blogged about its risks - the prisoner program was re-dubbed the White Collar Criminal Rehabilitation Program.

I suppose the concept of inviting prisoners, some serving long sentences, in order to develop close, long term relationships with our most helpless citizens, didn't sit well with a few donors..

That's not to say that the Aleh PR machine doesn't make a valiant effort to present these prisoners as exemplary citizens. Here is one description they disseminate, quoting Orna Ben-Tal "who helps direct the program in the South":

“It is clear that we can’t just accept anyone to this volunteer program, particularly because we are dealing with a population that is vulnerable and weak. There are no violent offenders for example, nor murders, pedophiles or rapists, and those who are drug and alcohol addicts are not accepted into the program.” [Huffington Post]

I suppose those prisoners at Aleh who have been incarcerated for eight years snatched a neighbor's apple pie from her window sill. I mean which other crimes are left?

If you have been wondering what the point of all this is for the residents of this institution, well, Aleh sheds light on that - and inadvertently shoots itself in the foot in the process.

“We don’t want our disabled residents to be in their rooms all day, staring up at the ceiling. We want them outside, breathing the fresh air around the beautiful flowers here, interacting with people.” [Stav Herling-Gosher, quoted here. She "runs the public and international relations for Aleh Negev".] 

Whoa! Can you repeat that, please, Stav?  If it weren't for these bussed-in prisoners, Aleh residents would be sitting around all day "staring up at the ceiling"?

And that's with an annual gift of $24 million of government funds and millions more in donations to the Aleh chain!? That's with an expenditure, according to Aleh promotions, of $4,300 per month per child!

Pray tell, where is all that cash going?

As a first step toward de-insitutionalization in Israel, this program must become history. Remember, by the admission of the Israel Prison Service [here] no other country in the world has chosen to imitate it in the five years since it won an award.

Still in the tunnel, looking for the light

Still grappling with Chaya's liver disease - as yet undiagnosed definitively - and from the persistent pressure sores.

We had a harrowing Saturday night involving an hour and a half of consecutive seizures which had us with phone in hand to call an ambulance. But thank G-d we were able to avoid hospitalization as well as starting that new anti-epileptic, Vimpat. But we do now have a stock of the stuff in our medicine drawer at the ready,

As long as feasible, we'll continue to treat Chaya with CBD oil, three times a day and THC oil whenever the seizures erupt. (Those are the two forms of cannabis oil available.)

Chaya is also getting diuretics to remove the ascites (fluid accumulation) caused by her liver damage, Ridding her of fluid has resulted in an extreme gauntness that shocks us anew every day. Bones and veins that were not meant to be seen by the naked eye are protruding everywhere.

We were also blown away by an email we received a few days ago from the pediatric neurologist who had been treating Chaya for the last five years and who had basically told us to go jump in a lake when we first notified her of Chaya's liver damage 6 weeks ago. This week she wrote a one-line inquiry about Chaya's condition. Neither my husband nor I have yet managed to deal with our disappointment or to figure out what sort of response to write.

And while we struggle through this without any help from "the system", that institutionalization empire, Aleh, churns out its lies in a steady flow of fresh PR releases.

Here's one that caught my eye. I was struck specifically by the repetition of the term "family" to describe Aleh. As if hammering away at that appealing mendacity will make it true.

The Aleh Family - an Unbreakable Bond | ...ALEH is a family, so when a member of the family celebrates an important milestone, it only makes sense that everyone is involved... As the ALEH residents, staff, and volunteers danced with Elisheva and her groom, it was clear that they were a real family.  

We all know what a family is - and no residential institution comes close to fitting the description.

Dealing with a new diagnosis

Here at home, Chaya received a new diagnosis this week from the gastro doctor: Autoimmune Hepatitis. He told us its cause is unknown and it is almost unheard of in patients as young as Chaya.

So while she is no longer on Valproic Acid, it is unlikely that her liver will repair itself to any extent. On the contrary, as the doctor added, progression of the disease is the sole prognosis.

Her assisted walking with me has deteriorated dramatically in the past week and she looks gaunt now that excess fluid is being removed by diuretics.

All in all, Chaya is not in a good place.

More things we ought to know about Aleh

A prisoner and an Aleh "resident" [Image Source: Israel 21C]

I took a break from grappling with Chaya's physical issues to email the International Corrections and Prison Association (a.k.a. the ICPA) this week. They are a nongovernmental organization in Special Consultative Status with the Economic and Social Council of the United Nations.

Why in the world did I do that?

Well, some of you know how riled I am by Aleh's prisoner rehabilitation program [some background] which it touts up the wazoo in both the Israeli and the foreign media.

Aleh's PR whiz team don't let anybody forget that the program won an award. And that is one detail about the program that is 100% accurate. The ICPA did in fact bestow the Offender Management and Reintegration Award on that Aleh program in 2011.

The Aleh program enables 26 felons to leave prison and swap their prison uniforms for civies every Sunday, Monday and Tuesday to interact one-on-one with some of Israeli society's most vulnerable citizens - those with profound disabilities.

This preposterous program plays out at the institution operated by Aleh in the middle of Israel's desert where the prisoners are assigned to male residents of young adult age or older. The felons, some serving seven year terms, are, according to Aleh, harmless. Nevertheless Aleh itself, by its own admission, keeps them away from its female residents, its children and its hydrotherapy. Apparently the male residents - equally at risk - just don't rate!

Given the kudos that Aleh has showered upon itself for this program and for that international award, it would be fair to presume that other institutions around the world are emulating it. So  I checked that out.

The very organization that granted it an award could not name another such program anywhere else in the world when I approached them. Instead it referred the question to the Israel Prisons Service. Here is the response I got from them this week:

Dear Frimet Roth

I received your question from Fraser Brayns [of the ICPA]

As you know, this is a unique project that was initiated at the Israel prison service.

I asked around and We are not familiar with similar projects that are currently being implemented in other countries. [I added the emphasis - FR]

Please don't hesitate to contact me on any further question.

Best wishes

Abigael

And on the financial front where Aleh manages to infuriate those who truly care about people with disabilities, here is this choice tidbit from Haaretz of April 19, 2016:

"Among other things, Budget Key [data analysts of government funding] investigators discovered that Aleh Negev, which runs a rehabilitation center in the Negev, saw its allocations from the government nearly double in 2015. The organization is headed by Avi Wurtzman of the Habayit Hayehudi party, who had been due to become a Knesset member with the resignation of Yinon Magal late last year... 1.2 million shekels ($317,000) in government funding, compared with 693,000 shekels the year before." 

Smelling a bit fishy to you too? You can  read more here.