Institutionalization: Upping the activism ante

From the Bizchut brochure

I am thrilled to share news of a concerted Bizchut campaign now underway. Its target: large, closed Israeli institutions housing a total of 16,700 residents with cognitive disabilities.

 The following is from their recent circular about it:

"We cannot abandon the residents of institutions, the weakest and most silenced population within the disability community. Bizchut is embarking upon a systematic exposure of the state of human rights in these facilities.

Your support for this project will enable us to expose and take action to correct violations of rights in three ways:

• Development of the MOSADOT app which will enable residents, relatives and professionals to submit complaints of violations of rights to Bizchut in real time.
• Institution WATCH Training - for activists who will carry out surprise visits to institutions: the team will include persons with disabilities, relatives and concerned citizens.
• Institution WATCH: Surprise Visits - Bizchut together with members of the Institution WATCH team will visit 20 institutions. Each visit will include preliminary collation of data on conditions in the facility, summary of findings after the visit, a report to the relevant government ministry and follow up on the violations exposed."

This is particularly welcome news for my husband and me. We are raising our 23 year old daughter at home despite the hardships that are rooted in a system favoring institutionalization. Citizens who, like our Chaya, suffer from multiple and severe disabilities are routinely separated from their families. 

The Bizchut logo 

That institution-bias results in generous funding for large, closed institutions coupled with meager assistance for families that keep their loved ones with disabilities at home.

Since we live in an "enlightened" age, the abuses that Bizchut has uncovered on its 2017 visits to those institutions may not strike many as alarming. Some may not even consider them deserving of a mention, let alone of an all-out campaign. And certainly not worthy of a visit to the Knesset like the one in session as I write.

Here are some examples:

• High functioning residents are often kept together with very low functioning ones. Some of them are very intelligent and articulate - as Bizchut activists found when conversing with them. There appeared to be no reason for them to be banished from mainstream society. When questioned, institution employees explained that a few of those residents had chronic health issues such as heart ailments or diabetes requiring medical monitoring!
• Residents were often found either sitting and staring into space around tables in bare rooms; at times there were several toys or puzzles on the table. Other residents were wandering around aimlessly. 
• Their rooms contained no personal effects, no photographs of family. Walls were bare both in rooms and public spaces. Some bathrooms had no soap, toilet paper, tooth-brushes toothpaste or any personal hygiene items.
• In some institutions, the structures were old and damaged and furnishings were dilapidated and broken. 
• In one facility, door handles to all rooms had been removed, staff members carried a standard handle with keys to give them access to those rooms but residents were barred from their own rooms without staff assistance. 
• In one facility several residents were missing teeth.

The list of critiques goes on and on. 

The director of one of those institutions wrote the Ministry of Health a detailed, itemized response. In every instance, he maintained that he and the staff were doing an exemplary job. The following are excerpted from his lengthy letter:

Regarding the inactivity/boredom complaint, he wrote:

• "The facility offers a structured program which we trust you [Bizchut] discerned"

On the teeth issue:

• "All residents receive annual dental exams... A dental technician periodically instructs the facility staff... Over the past 7 years, 15 residents have received implants..."

On the absence of door knobs:

• "There are some residents with 'challenging behavior' which necessitates the removal of door handles to protect them and prevent them from locking themselves inside their rooms"

I am proud to participate in this campaign. Looking forward to sharing a report on that soon!

Can Florida's DeSantis help bring us justice?

Image Source

Kudos to Governor-elect of Florida, Ron DeSantis.

In his speech last week at the national conference of the Israeli American Council (IAC), he mentioned our murdered daughter, Malki, by name. She was one of fifteen victims of Hamas terrorist AhlamTamimi in the 2001 bombing of Jerusalem's Sbarro pizzeria. 

Thanks to Jordan's King Abdullah, Tamimi enjoys refuge and adulation in Amman in contravention of Jordan's extradition treaty with the U.S.

DeSantis went on to urge the Department of Justice to prosecute Palestinian terrorists who murder American citizens abroad. "I want justice," DeSantis said, noting that the United States extradites terrorists from other countries who murder American citizens.

DeSantis is the first U.S. politician to publicly recall Malki and the travesty of justice we have been battling since the nefarious Shalit Deal of 2011 released mass murderer Tamimi from Israeli prison.

Here's hoping his words will herald a wave of pressure by the U.S. on its so-called "ally" Jordan. 

The Trump administration's effusive embrace of King Abdullah is no less misguided and immoral than its relationship with Saudi prince, Mohammed bin Salman.

A birthday plea for justice

My Malki

Today is my precious Malki's birthday.

It is amazing how the yearning to hug her, stroke her silky hair, kiss her, bask in the warmth of her perpetual smile, tell her how much I love her, just never wanes.

Fifteen when she was snatched from us, Malki would have been 33 today.

She probably would be married and I would be busy helping her out with her children while she worked in one of the para-medical fields as she told me she'd like to. She may, on the other hand, have pursued a career as a musician - she was a magnificent flautist who brought tears to my eyes with her playing.

Instead we have only the pain that our memories of her conjure and the agony of knowing that her murderer is alive, free and thriving. 

Thanks to the despicable Shalit Deal inflicted on us in October 2011, Ahlam Tamimi, self-confessed mass-murderer is married to her cousin, murderer Nizar Tamimi, a fellow Shalit Deal releasee. She resides in Amman, ardently protected by King Abdullah II. 

What a blow it was to witness her release from prison by our own leaders. Then to endure the release of her fiance, now husband who was, according to Israel's conditions under the Shalit Deal, prohibited from exiting the West Bank. But the pair wanted to unite and marry. So our government obliged them - after assuring my husband and me to halt our appeal to the High Court to bar his release. We were assured that it was unnecessary. 

Hours later, we learned we had been betrayed again. Nizar had crossed the Allenby Bridge into Jordan a couple of days earlier, probably hours after we filed our High Court papers.

Now we must also suffer the embrace of Jordan's king by the US administration. Since our Malki was a U.S. citizen, the U.S. has indicted Ahlam Tamimi, demanding her extradition. But the king has refused to comply, brazenly flouting an extradition treaty between the two countries, extant since 1995.

How has the US reacted to the Jordan's defiance? Hmmm - not exactly as you would expect.

In the past two years, it has embraced the king as an honored guest and partner seven times! It has praised him for his steadfast fight against terrorism! It has showered him with military and financial aid!

Not once has any member of the administration rebuked him for shielding a murderous terrorist. Not once has the FBI's demand for extradition been restated by the State Department or by the White House.

And so this embodiment of evil continues to incite her fans throughout the Arab world.

Last month, the Tamimi couple were guests on a popular Jordanian TV talk show. Ahlam spread her venom. Addressing the students in the audience, she said: 

"You - it is vitally important that you undertake a variety of actions so that you can "live" the Palestinian problem... direct our words toward the Zionist Entity saying 'No! to the matter of the Palestinian prisoners; there are consequences not only within Palestine but also extending out to Jordan, to Tunisia, to the entire Arab world."

On Malki's birthday, please do whatever you can to raise awareness of this travesty of justice. Help us return this murderer of fifteen men, women and children - once sentenced to sixteen life sentences - to prison, the one place she belongs.

November is Caregiving Month. Why it matters in Israel.

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How nice. The United States has given us our own month.

This year’s theme for National Family Caregivers Month, November 2018 is “Supercharge Your Caregiving”.

Now that's so vague, it begs an interpretation. So here's mine:

Galvanize and supercharge the public - enlist them as supporters of Home Caregiving.

So, here goes.

You may be one of those swayed by Aleh's line. Their PR team may have convinced you of their indispensability. You may now share their conviction that our population of people with disabilities could not survive without Aleh's existence - or would suffer irreparable injury if were eliminated.

I don't blame you. You are in good company. Most Israelis have succumbed to the notion that the residents of Aleh's large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order.

But I have learned that the above version is a far cry from the truth. Aleh, Israel's largest chain of closed institutions for people with disabilities, actively solicits residents. 

It literally urges struggling parents to give up their children. Its staff assuages parents' concerns about the negative effects of institutionalization, reassuring the hesitant that they can "remain parents" even after abandoning their children. They assure parents they will be free to visit their children at any time, noting one mother who stops by the Jerusalem branch nightly at bedtime to see her child. They concede that handing over a child is "a difficult process" but ultimately worth it: "You will get back your life" once it's done.

Screen shot from this YouTube video

These promises are made without any knowledge of the child's disabilities or of their severity. One parent was actually phoned by the director-general of the Aleh enterprise, Rabbi Yehuda Marmorstein, who encouraged him to hand over his daughter shortly after the passing of the child's mother. That father relates the phone solicitation on a video proudly publicized by Aleh on its website.

Here in Israel, the belief that caring for children and adults with disabilities within large, closed, isolated institutions is ideal, is gospel. Even organizations that champion the rights of people with disabilities don't tackle this challenge unless blatant abuse of residents has been exposed. And that, as we all know, is not easy. 

Staff members worry they'll lose their jobs if they turn whistle-blower. Parents are fearful their children will suffer consequences if they speak out.

So, as I said, if you have succumbed to Aleh's PR that is understandable and you are not alone. But outside of Israel, it's an entirely different story.

Institutionalization is consistently maligned. For instance, here is a NY Times opinion piece from last week ("The Lasting Pain of Children Sent to  Orphanages, Rather Than Families") highlighting the enormous gap between Israel and the rest of the developed world:

Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages... But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [link] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."

Why is Israel treating its children with disabilities as if it were a poor country? The fact is that the government gives tens of millions of dollars annually to Aleh institutions. Here's how they say it on their website:

Q. What is ALEH’s annual budget?
A. ALEH’s operating budget for all four facilities is about $30 million. The Israeli government provides 85% of that sum, while the rest is fundraised by ALEH through private contributions. This amount does not include capital development projects, which receive 50% funding from the government.

That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve this more cost effectively than through institutionalization.

As the NYTimes piece points out, many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism" is actively solicited by Aleh, which repeatedly posts profiles [here for instance] of overseas volunteers who have who have worked there.  Over a dozen such volunteer "testimonies", as Aleh calls them, currently appear on their website.

And more, from that NYTimes piece about volunteers:

“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. ...But such volunteers might be doing more harm than good... Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away.Volunteers are also perpetuating a system that takes children from their families. The word “orphanage” is a misnomer, because the vast majority of children in orphanages have at least one living parent. These parents give up their children because they are too poor to care for them. What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”

So in November, make your voice against institutionalization heard. Support Israel's parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many of us who institutionalize our children would keep them at home.

Let's follow the lead of other enlightened countries. Could they all be wrong?

Our daughter's murderer - live on Jordanian TV yesterday

Here they are, Nizar and Ahlam Tamimi, seated so properly and civilly in a Jordanian TV studio yesterday, smiling so congenially, hands primly placed in their laps. 

Who would guess that this is one of the most evil, bloodthirsty, terrorist couples alive today? 

If we, the parents of one of their many victims, would not remind the world that the path this pair has chosen is that of mass murder, would anybody know that? Would anybody care? 

Thanks to Prime Minister Netanyahu's misguided Shalit Deal, they have been enjoying a life of comfort and happiness under the paternal protection of Jordan's King Abdullah II. 

He is perpetually lauded as a "trusted ally" of the West in their struggle against global terrorism. Somehow his refusal to heed the US's demand for her extradition - since several of her victims were US citizens - hasn't ruffled anybody's feathers. 

But our determination to see her brought to justice is strong.

A hospitalization journal

Sunday, October 7

I'd hoped we could keep these hospitalizations annual - but it was not to be. Yesterday, a half hour after feeding herself a big meal with gusto, Chaya vomited it up in its entirety. Afterwards she copiously vomited liquid every couple of hours.

We tried caring for her at home administering Pramin suppositories - acquired from a local gemach  - as her pediatrician advised. He said that without fever or diarrhea the likelihood of dehydration was slim. But the Pramin had no effect. Horrific doesn't come close to describing that night. 

By morning, there were strands of brown blood in the vomit rendering the question of "what to do" a no-brainer. So here we are back in the ER, 11 months after Chaya's last hospitalization. 

So far, she's weathered a chest x-ray and a 12 hour struggle to get urine via a catheter (an incredibly incompetent nurse couldn't get any urine even though Chaya's on a fluid drip. The next shift's nurse collected it with ease. The consensus: it's another UTI. 

This leaves us at a loss as to how to prevent them. We had to stop giving cranberry juice several weeks ago because that seemed to cause vomiting. Should we now resume that, perhaps in a more diluted form?

Tuesday, October 9

Here we are, finally, in a proper ward (where we waited several hours in the corridor for a room):

The doctors' diagnosis has done a 180: UTI is now negated and replaced with "some infection, somewhere", possibly gastroenteritis. Presumably that triggered aspiration of vomit since the blood test results indicate infection. The profuse vomiting may then have caused intestinal bleeding which appeared in her vomit. 

She's still getting IV Controloc (pantoprazole) to prevent a repeat of that bleeding although there's no sign of it anymore, not even in her stools.

Bumped into that neurologist who we concluded had dumped us when she ignored our last email. Apparently she never saw it and is happy to resume her role as Chaya's neurologist. While she's pleased we consulted that senior epileptologist she recommended, she warns that getting regular appointments there won't be easy.

So she promptly ordered a CT and an EEG for Chaya. She also assured us she'll contact that terrific American neurologist whom we encountered during last November's hospitalization. He's the doctor who rescued Chaya from the avalanche of drugs that had reduced her to semi-comatose. 

I may have mentioned here that we can't contact consult him directly because he doesn't have a practice; this neurologist who will be our conduit to him decided to search for info about central fever and told us she learned it's not uncommon among uncontrolled epileptics!

Chaya is now off the IV drip and has begun to eat and drink. She's back on her Vimpat which was only available in pill form. (They had Keppra in IV form, so she's been getting that regularly). But I haven't resumed the cannabis yet.

We've missed hydrotherapy - Chaya's pinnacle of pleasure - which takes place on Tuesdays. We may also miss the long-awaited delivery of Chaya's new wheelchair scheduled for Thursday.

Wednesday, October 10

Back on the drip because, after a batch of heavy seizures, Chaya was unable to eat and could drink only a bit. A CT was done this morning. Not clear why it was ordered but haven't heard any results yet in any case. UTI has been ruled out even more emphatically today. It's not looking as though we'll have C. home in time for the wheelchair delivery tomorrow.

And here are a couple of gems from the medicos...

Nurse about to finish her shift comes around with next shift's nurse to do what is known here as חפיפה (= passing the baton). I hear her mention that she had taken Chaya's temperature which was slightly elevated but that she decided against Tylenol. I told both nurses that she is seizing badly and could actually benefit from Tylenol for her fever. Then the nurse about to leave delivers her pearls of wisdom: "You see, she's seizing badly because her epilepsy isn't controlled. It needs to be brought under control. She needs to see a neurologist." To me: "You should consult a neurologist." 

I regret that I didn't ask her: "Why? Do you think she might have epilepsy?"

Wednesday night, October 10

I witnessed an argument between two doctors at the station which was situated immediately outside our cubicle. I had the curtain open so couldn't avoid seeing and hearing one, a male , tell the other, a female: "You're a hussy". The other responded: "Well tell me, do you know the patient's background?" "You ought to tell me it", snarled the guy back at her. "No, you're supposed to know it," she repeated. "Why don't you just do your job?" The guy shot back adding once again: "You're a smart-ass." 

Help! So many lives are in the hands of these nincompoops.

That same male doctor had earlier declared to my husband as he saw him approaching: "Whatever you're about to say, I'm not interested unless it's urgent. I only deal with urgent matters."

Thursday, October 11

Chaya will be released today. Didn't see that coming. The CT negated anything alarming and the EEG showed no change since the last one.

While she isn't eating or drinking much, I nixed the nurse's suggestion of a feeding tube. On Tuesday, a speech pathologist assessed Chaya's swallowing skills and they passed muster. So I figured it was best to just persevere with feeding by mouth. Minimize intervention is our credo.

Thursday night, October 11

Home! And, the icing on the cake is that the new wheelchair is here too! Here is Chaya, sitting in it for the first time:

Next up: Aleh actually encourages parents to give up their children to its institutions. It does so via its new Hotline. No wonder that hospital staff repeatedly asked us about Chaya: "Where does she live?" And were surprised by our response.

Mastering the art of gripping and dropping

Occupational therapy sessions entered Chaya's life about two months ago.

Scheduling them isn't easy because both Elvie, her caregiver, and I want to be present and Chaya must be seizure-free. 

We've already had one fiasco - Chaya in the throes of a string of seizures when the therapist arrived. (I had called to notify her but she was already on her way). 

But her other sessions were rather productive ones. 

Over on the right is C. getting her ligaments gently stretched at the session's start to increase her range of movement.

And below is a photo of her gripping an object while our therapist, Neria, shakes her hand. She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it. 

Modest goals, but they elicit bravos from all three of us - the therapist, C.'s caregiver, Elvie and me. 

You've got to admit, we're a realistic bunch.

We had about two weeks of relative relief from seizures (i.e. about three a day) which I attributed to the rise in the night-time Vimpat dose. But here we are after raising the morning dose too and the seizures are back with a vengeance. 

We still haven't managed to check the Keppra blood levels. So maybe therein lies a solution.

The Kupat Holim (health fund) nurse tells us that test will only be available after Sukkot.

No hydro photos because the therapy pool is also closed until after the chagim (the Jewish festival season).

Finally, we are excitedly awaiting delivery of Chaya's new wheelchair on October 8.