Justice, O Justice, where art thou?

Marshmallows at a bonfire

A child's recent death at Aleh Negev has received meager coverage. In fact, as far as I can tell, it was not reported in English anywhere.

Below is my translation of a version of the tragedy as published by a Hebrew news service:

Death of A Girl at a Rehabilitation Village: Police to Investigate Suspicion of Negligence 

The funeral of five and a half year old girl from Ashdod who choked to death from eating a candy at the rehabilitation village Aleh Negev near Ofakim was held today. Staff members at the village who were witnesses gave testimony to police and are expected to give further testimony as the investigation progresses.
The girl, who apparently choked while eating a marshmallow, was buried today at the cemetery in Ashdod where she lived. Prior to the funeral, a dispute erupted over carrying out an autopsy on the girl's body. Last night, the police requested an order authorizing an autopsy from the Magistrates Court in Beer Sheva due to suspicions of negligence.
The court acquiesced and determined that an external exam should made concurrent with the freedom to do an autopsy.
This morning, attorney Dror Shusheim of Zaka's legal department submitted an appeal to the High Court of Justice and minutes before the hearing the State Prosecutor announced that the State accepts the appeal and is releasing the body without an autopsy.

As we all are aware, marshmallows pose a choking risk even for non-disabled children. This girl attended a school at Aleh which caters - as Aleh itself boasts incessantly - to children with severe disabilities!

In fact, several of the reports I saw conveyed a response from Aleh which included the following (again, my translation from Hebrew):

"Due to her complex medical condition since birth, the girl was cared for during a prolonged stay in the complex nursing section of the village with much devotion by our devoted professional staff who cared for her from the day she arrived. About a year ago, thanks to her improved condition, the girl was released to live in the community, medical oversight continuing within the framework of the health fund (kupat holim in Hebrew) to which she belonged and she received therapies to improve her development within the framework of the special-ed school at the (Aleh) village."  

These notes are extracted from an official New York State health-focused website:

Choking Prevention for Children | Choking Injuries and Deaths are Preventable!

Choking Hazards | Foods:
Hot dogs (especially cut into a coin shape), meats, sausages, and fish with bones
Popcorn, chips, pretzel nuggets, and snack foods
Candy (especially hard or sticky candy), cough drops, gum, lollipops, marshmallows, caramels, hard candies, and jelly beans
Whole grapes, raw vegetables, raw peas, fruits, fruits with skins, seeds, carrots, celery, and cherries
Dried fruits, sunflower seeds, all nuts, including peanuts
Peanut butter, (especially in spoonfuls or with soft white bread)
Ice cubes and cheese cubes
Foods that clump, are sticky or slippery, or dry and hard textured
Food size and shape, especially round or a shape that could conform to the shape and size of the trachea (windpipe). The size of a young child's trachea (windpipe) or breathing tube is approximately the size of a drinking straw in diameter.

From Kol Ha'Ir Jerusalem, May 26, 2000

Back in the year 2000, a similar tragedy occurred at an Aleh institution.

In that case too, the resident, an 18 year old, died

"after she choked apparently as a result of aspiration - the inhalation of the stomach's contents into the lungs. A doctor at the institution testified that after the youth received her meal and despite her previous incidents of aspiration, she was left unsupervised. "The caregiver came to turn her over and found her completely blue", the doctor said."

The journalist who wrote the report of the incident [copied on the right] told me that the case was closed by police because the family of the child refused to authorize an autopsy.

His brief article appeared in the local Jerusalem paper a clipping of which I saved.

There is more to say on this.

Making it a round dozen

Last week, we tried out a new neurologist, one who specializes in epilepsy, aka an epileptologist. This brings our tally to roughly a dozen since, when she was three months old, we discovered that Chaya was neurologically impaired.

In the hospital waiting area

Here (right) is Chaya at the hospital while we wait to be admitted to the new doctor's office. 

We had to pay out-of-pocket because the earliest appointment with her that we were offered in the public clinic was April 2019! At a time like this, our system feels like "public medicine" only nominally. We are forced into the private domain too often.

This epileptologist gave us an hour and a half during which we covered Chaya's history, symptoms and functioning. 

Afterward the doctor conveyed her thoughts and recommendations. This probably sounds rather routine but, trust me, in our experience, it's a rarity. We really felt that we got our money's worth.

Of course, that's not to say we left her office uplifted. There was much for us to digest and ponder. So here goes.

Med changes

First, she recommended raising one of the two anti-epileptics Chaya's on, Vimpat, by 50 mg/dose. I promptly did that the following night. After two weeks, we raise it in the morning as well. She said the current dose is considered low. Who knew? (And who knew that nabbing those 50mg pills of Vimpat would be so challenging. So, beware, they are in short supply and available only in a handful of Kupat Holim pharmacies).

She also advised doing a blood test to check the level of the second drug Chaya gets, Keppra. Her current dose of that drug - 1,500 mg. twice/day - is also deemed low. Again, news to us. Our previous neurologist either was unaware of that or just kept it a secret. 

In fact, at our last visit she had recommended adding a third anti-epileptic! Frisium! That's one of the benzodiazepams that rendered Chaya semi-comatose during her hospitalization back in November! (As the exclamation points indicate, I haven't yet recovered from that nightmare.)

By the way, that incompetent neurologist never bothered to answer our last email. In it, we mentioned, inter alia, that we had not added the third med, Frisium, as she had instructed us to do. I suppose she wasn't too pleased with that.

Back to the new neurologist...

Video EEG

We've never done one and she'd like us to. So some time in the coming weeks, Chaya will be hospitalized for 24 hours. Here's hoping we glean some helpful revelations. Our Kupah has already given us a hit'hayvut for it.

Chaya's frequent fevers

New neurologist wasn't impressed with the exclusion testing that C.'s pediatrician did. As I've written, he did a thorough clinical exam and blood test before concluding that the fevers Chaya's now getting - they max at 100.6 degrees Fahrenheit rectally - are not caused by an infection. Ergo, they must be central.

New neurologist said that those exams weren't enough to reach that conclusion. She said she's seen patients whose seizures are more numerous than Chaya's but who never get central fevers. She suspects there could be some underlying condition, perhaps related to her life-long thinness, triggering the fevers. She said the pediatrician should have referred us to a specialist - she couldn't specify but tossed out endocrinologist and gastroentereologist as possibilities - who could run further tests. 

"Ouch", I thought when I heard that criticism of our ever-supportive, brilliant and kind pediatrician. But the following day, he read the new neurologist's summary with equanimity, then promptly gave us referrals for a couple more blood tests to tighten the "central fever" theory. He never ceases to amaze us.

VNS

New neurologist strongly urged having a new VNS implanted. The one Chaya sports now dates back to December 1999 and never helped her one iota. She advises trying it again. Of course, this time we'll have somebody better equipped to calibrate it afterwards. Back in the year 2000, there wasn't any such expert in this city. (I know, I know: so why did we implant it then anyway? That was just another of our many blunders.)

But removing this old one isn't easy, we've been told, because the wires are now overgrown with skin - or something along those lines. 

Also, the last neurologist to push a VNS replacement was the one who destroyed Chaya's liver with Valproic Acid and refused to own up to it. Negative associations.

Cannabis

I had braced myself for dismissiveness so I was relieved when new neurologist simply noted that Chaya's CBD dose is very high. Which would explain why the Health Ministry refused to renew our license for 11 bottles (= 100gm) per month. Our new one permits only 10 bottles/month.

She said Chaya's current dose would be more efficacious in the form of vapor which is absorbed far more quickly. I haven't gotten around to inquiring about the availability of this form at our supplier, Tikun Olam. My hunch is we'll need to switch to another supplier (the one that the doctor recommended); not a process I relish.

Hydro

Last week yielded a brief respite from frequent seizures and fevers during an extra long hydrotherapy session where Chaya truly rocked. Here she is:

Sadly, the therapy pool will be closed for the entire coming month. Wishing everybody a G'mar Hatimah Tova and an easy fast on Yom Kippur.

Waiting for a wheelchair - and a bizarre partnership

Chaya in her old (and current)
wheelchair

It's been six months since we lodged all the paperwork necessary to convince the Ministry of Health to approve a new, subsidized wheelchair for my daughter Chaya.

In the meantime, she continues to spend most of her waking hours in the ill-suited, uncomfortable wheelchair selected for us by the "seating expert"/physio-theraist in her school ten years ago. 

At our request, our current seating expert (she works at a rehabilitative hospital) who selected the new wheelchair inquired again about the delay. She wrote us that the reply from the Ministry of Health was:

"The treatment requested has been delayed and that they promised to hurry."

Now, even if a wheelchair were delivered to our door tomorrow, it couldn't count as "hurrying". Of course, we are bracing ourselves for a further interminable wait.

And after a two week phone pursuit, we finally landed the physiotherapist from our Kupat Holim (health fund). He showed up last week and put Chaya through his routine of extremity stretches, advising us to do them with her every day. He said he would return in a month since we're only entitled to 12 sessions per year from the Kupah.

When my husband requested that he recommend hydrotherapy for Chaya, he poo-pooed its benefits since, after all, Chaya "doesn't live in water". That's the same response, verbatim, that he gave us a year ago. 

Chaya in the hands of the Kupah
physiotherapist

So once again, my husband patiently educated him about the phenomenal benefits our daughter derives from hydrotherapy. And once again, he agreed to recommend that the Kupah allot her their maximum of 6 sessions.

That's per year! (Note: Chaya can't get any hydro from the Kupah without his recommendation).

Yes, it is somewhat Kafkaesque trying to keep your severely disabled child at home rather than locking her away in an institution. This is particularly true in a country as enamored with the institutionalization of people with disabilities as Israel is.

I was shocked to learn this week that Israel admits representative of Aleh, Israel’s leading chain of large, closed institutions, into our school classrooms to "educate" pupils about disabilities. So, we have our most impressionable population being taught that "inclusion" equals isolating people with disabilities from both families and communities.

Here is what Aleh's website says about that brainwashing program:

“We couldn’t be prouder of this program, which is the fulfillment of a dream for ALEH. Working together with the Ministry of Education, we are educating towards change on a grand scale and seeing immediate results countrywide,” said Avi Wortzman, Director General of ALEH’s rehabilitative village in the Negev and the brains behind the Tikkun Olam program.

The benefit that he raved about was "a noticeable spike in youth-led volunteerism and social activism initiatives."

My apoplexy peaked when I read that

"to increase Tikkun Olam’s geographic reach and professional depth, ALEH partnered with non-profit organizations Makom L’Kulam (“A Place for Everyone”) and Negishut Yisrael (“Access Israel”), both leading voices in the fight for disability rights in Israel." [Source]

Et tu, advocates for the disabled?

I have written to Makom L'Kulam about this bizarre partnership. I will share with you any response I receive from them.

Rocky

Chaya's end of year celebration

We "celebrated" Chaya's graduation from her last year of school. Ever. (See snapshot on the right.) Our state now throws her to the wolves.

We have the choice of kicking her out of her home and plonking her in an institution - Aleh is the one that every professional we've encountered mentions as an option.

Otherwise, she is eligible to attend one of three "day centers" in Jerusalem. My husband visited two of them (the best of the three) and we can't consider those realistic options. People with profound disabilities are provided  nothing beyond very basic care by a staff of 2:10 students. Any therapies that will be offered - and some do not offer any - will be fewer than at her current school where they are 30 minutes per week per therapy. The math is disheartening.

Care to join our fight?

The Kupah (medical insurance fund) we're in offers Chaya 7-12 sessions of physiotherapy. That's per YEAR. Oh, and we forfeit that "gift" if we enroll her in one of the day centers.

Undoubtedly a grim picture. We are keen to petition the High Court for provision of the same services at home as Chaya would receive were she institutionalized. Bizchut assured me that if I could locate another four families to join our petition they would consider shouldering the cost of such an initiative.

Is there is anybody among you, readers, who has a child over the age of 21 with severe disabilities living at home? If so, do you feel entitled to therapies and care -assistance from the government? If you are up for the fight, please contact me.

And on a more upbeat note, my son forwarded this moving Washington Post photo essay of adults with developmental delays who are involved in romantic relationships.

Several years ago I wrote two articles about a Jerusalem couple with Down Syndrome who married, one before the wedding and the second, two years into their marriage. They're here and here. (Note: I used pseudonyms in the pre-marriage article.)