Tuesday, February 20, 2018

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.

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