Friday, December 30, 2016

Thinking of Canada

Chaya was rushed to hospital by ambulance this week
[Illustrative image from Shaarei Zedek's website]
We have been weathering an overwhelmingly difficult period with our youngest child, Chaya.

Then, just to stir things up a bit, my heart decided to "break" on me: I was hospitalized with Broken Heart Syndrome, a.k.a. Takotsubo Syndrome a.k.a. Stress Cardiomyopathy.

But after I’d returned home, thank G-d on the mend, Chaya decided to spice things up again with uncontrolled seizures rendering her unable to swallow either food or water. My husband rushed with her by ambulance to the ER. Throughout the 24 hours that Chaya spent in the aisles of the ER, my husband sat glued to a chair beside her.

After receiving IV fluids, she was launched on two new meds which we hope will improve her seizure and liver problems – Keppra and Prednisone. Perhaps they’ll also enable her to retrieve those minimal skills she’d acquired over many years – feeding herself and walking with assistance – which have entirely evaporated in the past week.

Our quest for some help at home is dragging on so we are still caring for Chaya ourselves while I try to sandwich in a bit of  recovery from my unexpected coronary event. “The system” (i.e. Ministry of Welfare and National Insturance) washes its hands of parents who opt to keep their children at home despite disability and illness (as I described in "Aleh 101" a year ago). “How dare you reject institutions like Aleh!” is basically the message.

Thus it was with particular disappointment that I encountered yet another PR plug for Aleh's chain of institutions. Dated December 23, 2016, it appeared in the local daily, Yisrael Hayom, a known mouthpiece for Prime Minister Netanyahu. Purportedly penned by a Canadian pediatrician, Dr. Lynn Hierlihy, it spouted the customary Aleh hype. But because it was a medical professional this time advocating the institutionalization of our most needy children, I was especially incensed.

Her blog post [here] first sang the praises of volunteering:
Volunteers are critical partners in the growth and development of society... And while these individuals are no doubt selfless, they will often admit to a single "selfish" motive: Volunteering makes them feel incredible. Numerous scientific studies have proved that volunteering reduces stress and improves physical and mental health.
She elaborated on the topic and I have no gripes about that. True, I have rarely found volunteers very helpful in caring for Chaya and much prefer professional input for people with profound disabilities. But, fair enough, she made an innocent point.

Afterwards, though, she segued to a florid profile of Aleh. I would have expected a pediatrician to appreciate the crucial role that a family and its love play in a child’s healthy development. And I mean all children – including those with disabilities. But apparently this one doesn’t.  To hear one instead extolling the virtues of closed institutions is baffling.

Here is her paean to Aleh:
Needless to say, our visit to ALEH Negev-Nahalat Eran was magical. Never before had I seen a rehabilitation or long-term care facility that so clearly exemplified how "the world is built on loving kindness." I fell in love with the children and their dedicated caretakers, and I embarked on a mission to raise awareness about ALEH upon my return home. I now do everything in my power to connect our community in Canada to the ALEH family. When my son celebrated his bar mitzvah, he requested that guests make donations to ALEH in lieu of gifts. Our synagogue has established an ongoing relationship with the organization, which I coordinate, to ensure that we continually give back to our newfound Israeli family in any way we can. And I take every opportunity to visit ALEH and lend a hand.
Dr. Hierlihy’s blog post is particularly confusing coming as it does from an Ontarian. Canada deinstitutionalized its care for people with disabilities several years ago. In the Spring 2009 (Vol. 28, No. 1) edition of  the Canadian Journal of Community Mental Health [here], we read that:
Ontario has recently closed its last 3 institutions for persons with developmental disabilities. Very little research has been conducted on Canadian deinstitutionalization projects, and the impacts and bona fides of such endeavours have not been well documented in Canada. However, the closing of institutions has occurred in most Western jurisdictions and has been the subject of much research in Australia, the United Kingdom, and the United States. Although community services are of variable quality, this literature review suggests that the Ontario plan to close institutional facilities in favour of community-based residential services will be of general benefit to former institutional residents.
That CJCMH article concluded that
Very simply, the institution cannot replace the community in providing individuals—including those with developmental and serious psychiatric disabilities—with the opportunities for the good life. There are no compelling client-related arguments left for keeping people with cognitive limitations, and possibly people with psychiatric disabilities, away from their families and communities.
Don’t Israelis with disabilities deserve the same compassion, the same dignity, the same loving care within their family and community as do Canadians, Dr. Hierlihy?

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