Wednesday, September 18, 2019

Institutions: The world goes one way, Israel and Aleh the other

The planned interior of the newly-announced rehab hospital at Aleh Negev
On September 12, 2019, Aleh released a promo of its much-touted rehabilitation hospital: see Times of Israel 

It will be erected beside the largest of its four institutions for people with disabilities, Aleh Negev Nahalat Eran. And it is heavily subsidized by the government of Israel and the Jewish Agency. Naturally, donations are also welcome.

The PR "smoke-in-our-eyes" piece glosses over the institutionalization aspect while homing in on the planned hospital's features.

I noticed two interesting details that I fear will likely be overlooked:
  1. In mentioning the institution where some 140 children and young adults are locked away and isolated from society, it refers to them as "villagers". How quaint. Only they are not villagers in any sense of the word. A village is "a part of a world clustered human settlement or community, larger than a hamlet but smaller than a town, with a population ranging from a few hundred to a few thousand." That's Wikipedia speaking.
  2. In mentioning "Dr. Itzhak Siev-Ner, head of the Rehabilitation Department at the Health Ministry who is leading the new venture on behalf of the government" it omits that he is also Medical Director, ALEH Negev–Nahalat Eran Rehabilitation Hospital [source]. I'd wager that's a conflict of interest of the first order.
Bizchut protest outside Ministry of Welfare August 2019 in the wake
of the killing of Ephraim Ben Baruch
Below, for some contrast, is my translation of an article circulated by Bizchut activist Naama Lerner after the murder of Ephraim Ben Baruch in a Haifa institution two months ago:
Ephraim Ben Baruch lived for six years in the Ramat Haifa residential facility, intended for people with cognitive developmental disability. Throughout, he complained repeatedly to his family members. "He said it's bad for him, that he is being hit", says his mother, Racheli Ben Baruch. "When I visited the facility in order to complain they showed me photographs of him laughing and eating. That everything was fine. I believed them. I call on parents whose children live in hostels not to be complacent like me. If your child complains, start acting so that you will not face the situation that befell me." 
Ephraim died three weeks ago in the institution he lived in after he was allegedly beaten by his caregiver. 
A tragedy like this, that joins other cases of abuse by counselors and caregivers of their charges, highlights the need for a "house cleaning" (in Hebrew: בדק בית) of everything related to appropriate housing solutions for people with disabilities. 
Only two months ago, a young woman who worked in a hostel in Kfar Saba was accused of attacking a resident of the institution on several occasions. In January, the police arrested two women on suspicion of attacking a 50 year old resident of the hostel in Nahariya where they worked. 
According to 2014 findings, there are some 25,000 people with disabilities living in "out of home" residences (hostels, dormitories and protected residences) in Israel. The overwhelming majority are people with emotional disabilities and with cognitive developmental disabilities; a minority have physical and sensory disabilities.
Some 6,100 people with cognitive developmental disabilities live in 63 dormitories (96.8 residents per institution on average), nine of which are governmental with another small number operated by amutot (not-for-profit associations). The overwhelming majority are institutions owned by private companies that naturally see before their eyes the bottom line.
The Right to Your Own Toothbrush
The above atrocities were committed in institutions against a background of a revolution in global awareness that is hastening an end to the locking up and isolating of people with disabilities from the community. In Western countries, the trend is towards the closure of large institutions and transfer of residents to independent living within the community.
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."
In 2012, the State ratified the treaty. Thus so long as residential dormitories operate, the state is in fact in violation of the law.
"The mere fact of life in an institution constitutes the negation of rights", says Ronen Gil Massi, of the ASD community in Israel. "A person who lives in an institution cannot decide with whom he will share his room or whether. A person doesn't even have a place for his personal toothbrush. A person's individual freedom must not be denied just because his only "crime" is that he is a person with disabilities.
Three weeks ago, a man was murdered whose sole crime was that he was cognitively impaired. This must not be permitted to continue time after time, and each time for us to be told "We'll only shut down the problematic institutions." [Source]

Tuesday, September 17, 2019

Election day thoughts

Our child's murderer at her June 2012 wedding in Amman, Jordan 
(she's second from right). Her husband/cousin is in the middle. The girl
in the blue dress is Ahed Tamimi, a cousin to both bride and groom.
Many of you are surely in a quandary: to believe the flood of negative coverage of Netanyahu or to discard it as fake news. After all, many journalists just want him defeated so should we trust what they write?

For what it's worth, my husband and I - utterly apolitical citizens - can contribute some personal insight into Netanyahu's morality and mindset.

On the day our Malki was murdered in the Sbarro massacre of 2001, Netanyahu was a guest of the Melbourne Jewish community. Local reporters told him that one victim, our child, was an Australian citizen as well as an Israeli. He immediately responded: I will be paying the girl's family a condolence visit upon my return home.

Empty words...

Several years later, the public learned that a deal with the devil, Hamas, to retrieve IDF captive Gilad Shalit, was imminent. Our child's murderer, Ahlam Tamimi, was being mentioned as one probable name on Israel's list of imprisoned terrorists to be "swapped" for Shalit. We fairly inundated the Prime Minister's office and the media with pleas for Tamimi's name to be deleted. Netanyahu's office didn't send even a monosyllabic response. 

And, of course, Tamimi, mastermind of the Sbarro bombing which took 16 innocent lives, (eight of them children) was freed. The convicting judges' warning never to include her in any possible future prisoner swaps was ignored.

Subsequently, Netanyahu speaking on television assured the public that he was sending all bereaved families who had been affected by the release a letter of explanation and apology. When we called his office regarding such a letter, an assistant of his assured us she had personally delivered hundreds of copies to the post office. 

I suppose liars hire liars. Because we never received such a letter, nor did any other of our terror victim friends.

Not long after her release, Tamimi publicized her hankering for another murderer who had been freed in the Shalit Deal - her cousin and fiance. She had been returned to her home in Amman. While he, under the Deal's conditions, was barred from leaving the West Bank. Not to worry. Netanyahu to the rescue. 

We lodged a petition with the High Court of Justice to enforce the Deal's conditions and bar Tamimi's fiance from crossing the Allenby Bridge into Jordan.

Some hours later, our lawyer was phoned by a Netanyahu government official who requested that we temporarily suspend those legal proceedings because all would be well. We need not be concerned.
We naively complied.

Next thing we knew, the Tamimi murderers were celebrating their reunion in Amman before rejoicing fans and media. [For some background: "A wedding and what came before it"]

Well, I suppose, we were actually to blame. Why hadn't we learned the obvious lesson? Never trust Netanyahu!

Now we suffer daily the double anguish of missing our precious child along with watching her murderer - sentenced to sixteen life terms but released after just eight years - enjoying her freedom and brazenly inciting Muslims to "follow in her footsteps and continue the fight".

Food for thought as you head to the polls.

Monday, August 26, 2019

Where's the progress for the profoundly disabled?

Well, it's been a while so I'll update regarding that protest demo I publicized here ["For Israelis with disabilities, two divergent paths"] a couple of weeks ago.

To put it bluntly: a disappointment. 

Meager turnout and infuriating response from the Ministry of Welfare, the building outside of which we protesters stood. A number of people with disabilities participated and expressed their anger. 

The mother of Effie Ben Baruch, the young man who recently died from physical abuse by his caregivers, was there. I approached her asking how she was connected to Effie - I had a hunch she was his mother from her grieving demeanor:

When we first approached the building's entrance gates, a guard asked the man in the wheelchair leading us: "Who is your representative?"

The wheelchair-bound man was duly infuriated: "We represent ourselves!" he responded.

After the protesters were refused entry, they demanded that the director of the Ministry's department for disabilities come down to speak to us. He did not deign to do that.

Instead, some other employee from an unrelated department eventually emerged from the "fortress" and promised that the director will be visiting Effie's bereaved family soon.

Hmmm. I call that a slap in the face.

As I overheard one protester in a wheelchair telling his friend: "This protest takes me back 30 years!"

Precisely. The baby steps of progress for the severely disabled actually feel more like deterioration in comparison with every other area of social welfare.

That impression has been reinforced since joining the Facebook page "Special Needs Mama's in Israel". I hoped to find camaraderie, a common cause, etc. Instead, I sense that parents of children with profound disabilities aren't even on that page's - or society's - radar. We're invisible. The gripes and venting posted on the page make me feel so isolated. 

I fairly pray for the sorts of problems that those parents bemoan. For instance, one mother related how her daughter sat on the curb and cried after waiting three hours for a bus to go to a movie with friend. Several buses had passed her by. As one commenter noted: "I'd have cried too!"

At my husband's urging, I'm considering starting a Facebook page for parents in my boat.

Any of you caring at home for children with serious disabilities, physical/cognitive, and craving such a forum please comment here. If you prefer privacy, I can provide my email address at your request.
BTW, once again, and unfortunately, that protest only received coverage in the Hebrew language media, so I will translate the following piece asap. 

For now, I've done the headline and the intro:
"I am not prepared to be stashed away in an institution": Will the resident who died from abuse advance the closure of institutions for people with disabilities"
The death of Ephraim Ben Baruch in an institution highlighted that the era of institutions for people with disabilities, mostly in private and barely supervised hands - has ended. But the transition to in-community living is happening at a slow pace, thousands live in danger, and the State continues to violate the law. This week families protested against additional neglect from outgoing Minister of Welfare Chaim Katz.
More to come.

Thursday, August 22, 2019

At Malki's graveside: Eighteen years

A photo snapped by a friend at the cemetery
during yesterday's memorial service
With the passage of time, I am struck more and more by the briefness of Malki and Michal's lives.

When Malki was still with us, I often related to her as a friend. She was, after all, the oldest of our daughters and extremely mature in her behavior.

But now, after 18 years, it is clear that she was but a child at the time of her murder. Which renders what she packed into those few years all the more incredible.

The giving, the love, the generosity and the volunteering, the smiles and the laughter, the faith and the faithfulness, the flute-playing, the creative artwork - all these she accomplished in incredible quantities and in a mere fifteen years. 

What a child we lost! How does one continue despite such pain?
And an even tougher question: How does one continue in our forefathers' path despite the pain? We grapple with this challenge every day.

This coming Shabbat, Parshat Ekev will be read.

In his commentary on this Torah portion, contained in his book "Esh Kodesh", Rabbi Kalonymus Shapira, the Rebbe of Piaseczna, offers us the following advice.

In the context of the Gemara, Masechet Shabbat כ"ה ע"ב, the Esh Kodesh, as the Rebbe has become known, writes that there are long periods in the lives of all rabbis when "the angel of G-d in them is not revealed" - meaning when a rabbi is not spiritually at his peak. 

In such situations, his students "awaken in him the Angel of G-d". By approaching him and asking him Biblical questions "they themselves cause him to resemble an Angel." 

The inquiries and questions emanating from the youths in our lives are what prevent our succumbing to pain. They keep that inner "Angel of G-d" from "waning and fading", in the words of the Esh Kodesh.

Let us pray that we always have beloved students at our side to provide the strengthening and awakening that will enable us to endure the endless pain and longing.

Tuesday, August 13, 2019

For Israelis with disabilities, two divergent paths

In Ilay's cafe, via Facebook
Sometimes we are blindsided by uplifting stories about people with disabilities in Israel.

It's important to circulate them, rare though they are, if only to note that Israel is not a desert of insensitivity and exclusion when it comes to our citizens with disabilities.

And here's a link to the (Hebrew-language) tale, via Israel's national TV news, of the mother and brother of one such person, Ilay, from whom we can learn about love, understanding and true inclusion.

If the Hebrew is beyond you, it's the the story of Shulamit Regev, a widowed single mother of twin sons, one of whom has recently enlisted in the army. The other is autistic and non-verbal. The boys have a very close and loving relationship. We are shown clips of them interacting as children and in real time. Then we are told of a cafe that the mother purchased and runs (as "Ilay's Place") where her autistic son works and hosts the customers in his uniquely welcoming way.

We see him in the kitchen demonstrating impressive culinary skills and hugging and kissing each and every customer in his gentle, unintrusive way.

But to inject a dose of harsh reality comes news of the death of Effie Ben Baruch, a resident of a closed institution for people with disabilities.

Cognitively impaired, Effie was allegedly killed by one of his caregivers in the Haifa facility called "Ramat Haifa". This is a link to a Hebrew news report about the tragedy along with photos from the protest rally held opposite that institutions days afterwards:

The poster reads: "Who Will Care for our Children When We are No Longer Here!"

A brief English report ("Disabled man dies after allegedly being beaten by caregiver", Times of Israel, July 26, 2019) says:
A disabled man died early Friday at a hospital in Haifa, two weeks after his caregiver allegedly beat him and caused him severe head wounds, Hebrew-language media reported. 
Efraim Ben Baruch, 29, was a resident in a care center for mentally disabled people. Shortly after arriving at the Bnai Zion hospital his condition deteriorated, with doctors declaring him brain-dead. 
The caregiver, Mohammad Khateeb, 19, from the city of Tamra, was arrested on Wednesday on suspicion of abusing a helpless individual. His remand was extended by six days. 
After Ben Baruch’s death, police said they were upgrading the suspicion against Khateeb to murder. A special investigation team was set up to assist in the probe of the incident. Police also said they would ask the court on Sunday to further extend his remand.
In court last week, an investigator showed judge Rivka Fuchs videos of the alleged abuse, saying there were “11-12 different episodes on the same day. His interaction with the victim is violent.”
Khateeb’s attorney had denied that the death was caused by her client, saying that Ben Baruch was taken to a hospital in the evening while he had suffered the wounds in the morning.
“There was independent harm,” she said, without elaborating.
A further response to Effie's death has been organized by Bizchut, Israel's Center for the Rights of People with Disabilities (my translation from Hebrew).
Sunday August 18, 2019, between the hours of 10:00 and 15:00, we will be protesting opposite the offices of the Ministries of Welfare and Treasury on Kaplan Street, the Government Offices Quarter in Givat Ram, Jerusalem, demanding a halt to the violence in institutions and hostels for people with disabilities and demanding their transfer in an orderly and respectful manner to independent lives with the personal assistance that they require before the next incident of murder occurs!
I plan to be there. If you're in Israel, I hope you will too.

Wednesday, August 7, 2019

At last - a pretty solid diagnosis

Let's hear it for the whole exome sequencing (WES) test and the Ministry of Health! (After all, it picked up the tab).

After 24 years, we finally have a pretty solid diagnosis for Chaya's symptoms; idiopathic has been officially deleted from our lexicon.

What was found is a mutation on the gene SCN2A. We learned the news in the geneticist's office which we entered and exited in 15 minutes.

A couple of weeks later, we received a more detailed summary of the findings which told us, among other things that a genetic variant was found which is designated VOUS or Variant of Unknown Significance on the gene SCN2A on Chromosome 2, exone 5

Mutations elsewhere on this gene are known to be the cause of Early Onset Epileptic Encephalopathy Type 11, a syndrome with symptoms identical to Chaya's. 

While Chaya's variant is on a spot where no other person is known to have one, the geneticists concluded that because 
"her clinical picture matches the clinical picture described in the EIEE 11 Syndrome, we are inclined to say that there is a high probability that the variant found in checking SCN2A which is described in the gene exome constitutes the cause of her illness... The laboratory in Germany that carried out the test concurred that the finding is a possible identification of the cause of her illness... It can be said with high likelihood that the parents and their offspring are not in any increased danger of a repeat of this anomaly in future pregnancies."
The geneticist recommended we consult a young local pediatric neurologist who might have some fresh treatment suggestions. She also promised to send Chaya's file to a neurologist in California who is researching this very syndrome.

But trusty Google has provided precious little further info. We now know that this diagnosis is rare, still being researched and that at this point, no reliable treatments are known. 

We're hoping that one of those two new neurologists will help us. It's the nearly two and a half decades of clueless doctors that I've been vividly recalling. Clueless and arrogant.

There was the developmental pediatrician who was the first specialist we consulted. He summoned his entire staff at the Center for Child Development, which he headed. into his office one morning while he examined Chaya. With utter confidence, he declared to his audience that she had been infected and damaged by CMV in utero. The trouble was, the blood test which I subsequently had proved him just as utterly wrong. I hadn't had CMV during my pregnancy.

That didn't phase the guy. Several months later, he declared to me with the same utter confidence that Chaya had Rett Syndrome. At the time, there was no blood test to contradict that wild guess. But her then-neurologist pronounced it a false diagnosis. She didn't have any of the major symptoms, one being the "hand-washing" which had prompted Dr. Andreas Rett to classify this group of children as distinctive. 

A few years later, Israel's chief Rett expert examined her and declared that her gait indicated that Chaya was indeed a Rett child. But when new blood tests finally appeared on the scene, they proved definitively that Chaya did not have Rett.

I also recall another neurologist's declamation to me when Chaya was about a year old: 
"She does not look like a child with a genetic disorder. It's not genetic." 
He also advised us to "send her away to an institution."

By now I'm sure it is clear why I am not a huge fan of neurologists. (You can read more about how I developed that distaste for them here: "A hospitalization journal".)

The silver lining to this bleak news is that the mutation is de novo. That means it wasn't inherited and, consequently, is of no concern to our offspring. Its de novo-ness was confirmed by doing the same whole exome test for me and my husband which proved that neither of us carries that mutation. 

One article I read posited that the most severe SCN2A cases are the de novo ones. A cloud in the silver lining?

One article that our son-in-law, a doctoral student of genetics, found us reports surprisingly encouraging results with unusual drugs. Conventional anti-epileptic drugs, it seems, actually exacerbate seizures for some Early Onset Epileptic Encephalopathy 11. 

But two drugs that are not intended to treat epilepsy were effective. Could that be why we find that Paracetamol helps her during a string of seizures?

In the meantime, here (above) is Chaya showing slight progress with pushing her switch to play music.

Monday, July 15, 2019

Is Aleh unstoppable? Let's hope not.

Aleh Jerusalem via Google Maps
A dear friend of mine is on the Aleh donors' mailing list (a fluke - she has never given them a cent).

She shared with me a recent e-mailer urging the Aleh donor base to dig deep into their wallets to grant the children "an unforgettable summer, filled with fun, laughter, and joy!"

The PR piece boasts that "they will be unstoppable". It never clarifies who that "they" is: the children, or the "dedicated staff and volunteers". But, of course, obfuscation is the name of the Aleh PR game.

So this PR piece convinces donors that their cash keeps Aleh afloat and will send 120 children to camp. 

Aleh's 2017 annual report [online here] tells a different story. There we learn that Aleh derived about 82% of its income from government sources - mainly the Ministries of Health (via the health funds or kupot), of Welfare and of Education.

Source: "Aleh 2018 End of Year Report" (Feb 19, 2019)

Bottom line: It's mostly Israeli taxpayers who are funding Aleh, whether we choose to or not. On their own figures, income from donations amounted to slightly less than 11% of total income.

But its duplicity is not the main reason I sincerely hope that Aleh is ultimately "stoppable". 

Below are five photographs of a friend's daughter who attended Aleh Gedera's school as well as its institution's afternoon program. On several occasions when my friend collected her child, she found her to be in a less than desirable state.

 Only on one of those did Aleh staff phone to forewarn her of her child's injuries.

The first and last horror shots were from the school; the others are from the afternoon program (the מעון) at the institution. The mother gave me permission to post these images.

Any institution that either inflicts such shocking wounds - or allows them to be inflicted by another child - must not be left "unstoppable". 

Help stop the sub-standard care of Aleh so that the children locked up there can return to the families and the community where they deserve to live.