Thursday, October 27, 2016

Aleh's marathon misstep

Israel's mammoth chain of institutions for children and adults with disabilities is constantly publicizing its activities - reprehensible though they are.

Its latest PR announcement reports that several supporters ran in a marathon to raise yet more cash for the flush Aleh coffers.

This is  newsworthy because - as Aleh pointed out - it was the first time that Aleh fundraisers participated towards that end in a foreign marathon.

But it is even more notable because the country which hosted the marathon in its capital, Germany, has been on the road toward de-institutionalization for over a decade.

In other words, Aleh's running fundraisers promoted a system of warehousing people with disabilities in a country that is busy abandoning that very system.

I'd say it's akin to demonstrating in the streets of Israel in support of honor killings in Pakistan, or of female genital mutilation in Somalia or of capital punishment in the United States - all practices illegal or avoided in Israel.

Already in 2007, a scholarly article, "Deinstitutionalization in Intellectual Disabilities" stated that
"In Belgium, The Netherlands, Germany, Spain and Greece the process of deinstitutionalization has recently begun but institutional care is still dominant."
That article reviewed studies of people who had been transferred from institutions to small community settings:
"People (250 were included in the study) were living in a variety of settings, from residential care to independent living. There was no relationship between cost and outcomes although people had a better quality of life in the community than they had had in the institutions." 
A smaller study was reviewed. It involved 30 matched pairs of people with moderate and severe intellectual disability and challenging behaviour. It produced equally encouraging results:
"Consistent with earlier research on deinstutionalization... they increased in adaptive behaviour, choice making and general quality of life."
To all you marathoners out there: How about running to improve the quality of life of our people with disabilities - instead of the finances of our largest chain of institutions.


  1. I propose you to have a look at the completely deinstitutionalized system that the UK has. Forces parents into directions that makes the circumstances extremely difficult, for both the parents as well as the children. Your piece is biased, as you base yourself on (among other studies) research of moderate and severe intellectual disabilities, whereas residents of Aleh have on top of that physical disabilities and medical issues as well. Advise you to take a look at Aleh before you judge. As a family member of an Aleh resident we know much better. Coming from abroad and having seen different options Aleh is the best possible solution for severely and multiply disabled children

  2. Interesting that your views, to which you inexplicably refuse to link your name, are precisely those promulgated by the PR machine of Aleh, Israel's foremost chain of institutions for people with disabilities.

    For the record: I have looked at an Aleh institution, a detail which is, however, irrelevant to the issues you raise: the interior decor, the appearance of staff members, the menu of meals are all immaterial to the damage done to individuals by their institutionalization.

    It's no secret that I am, as you put it, biased against institutionalization. In fact I'm beyond biased - I'm staunchly opposed to them along with nearly all professionals who advocate for this population.

    The studies to which I've referred most certainly aren't limited to people with only severe intellectual disabilities. Many include those with physical disabilities too. You can refer back to my earlier posts to corroborate that.

    This blog has always shared the details of my own child who has profound global disabilities (fyi that means both cognitive and physical) along with complex medical issues. Like our other children, she too deserves our loving care.

    If you would like to argue that some parents are unable or unwilling to care for their children at home, then do so. Those children can be adopted, fostered or raised in the community in small group homes.

    But to maintain that institutionalization in large, remote facilities like Aleh is the ideal alternative solution is a lie.

    Granted, deinstitutionalization hasn't been perfected in some venues where it is still a work in progress. But that fact doesn't invalidate it as the goal towards which Israel should finally aim.

    - Frimet Roth