Monday, February 19, 2018

That same old Sisyphean fight against the system

C. being evaluated for a new wheelchair in August 2017
(We're still waiting for it to be approved)
It's been six months since we lodged all the paperwork necessary to convince the health officials in our government to approve a new, subsidized wheelchair for my daughter, C.

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

At our request, our current seating expert who works at a rehabilitative hospital and who specified the new wheelchair, inquired again about the delay. She wrote us that the government person said the requested treatment has been delayed "and 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 physical therapist from our health fund. He showed up last week and put C. 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 fund.

When the Hubby requested that he provide us with a recommendation for hydrotherapy for C., he poo-pooed its benefits since, after all, our child "doesn't live in the water".

That's the same response, verbatim, he gave us last year.

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

That's per year! And note that the rules say we can't get any hydrotherapies via the health fund 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 ours is.

The physiotherapist working with C.
I was shocked to learn this week that it admits representatives of our leading chain of large, closed institutions into our 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 the website of that chain says about its brainwashing program:
"We couldn’t be prouder of this program, which is the fulfillment of a dream for [us]. Working together with the Ministry of Education, we are educating towards change on a grand scale and seeing immediate results countrywide,” said its director and the brains behind the 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 this outreach program's geographic reach and professional depth, we have partnered with two non-profit organizations, both leading voices in the fight for disability rights in in this country."
Et tu advocates for the disabled? I have written to one of those non profits about this bizarre partnership and will share with you any response I receive. (Postscript: A day later, none)


Elizabeth said...

This is so disheartening.

Bohemian said...

It is extremely disheartening to continually fight battles on behalf of disabled Loved Ones. I know that for my Seriously Mentally Ill Grandson I'm raising, we battled in vain to find 'suitable' placement in High School for him. Five Schools later we were still being told he couldn't come there anymore because it wasn't a 'suitable placement' either. So now he's a High School Dropout with an IQ of 148... a brilliant Beautiful Mind being wasted by a System more fearful and defining him by his diagnosis and 'disability' than his ample abilities. Finding Legal ways to discriminate and show bias and open prejudices. I am left just angry about it all anymore. I Hope the Wheelchair's approval comes sooner than later, the wait has already been ridiculously too long!