Can we stop idealizing institutions for people with disabilities?

Deep in the desert: Aleh Negev

(A version of this article under the title "Let's stop idealizing institutions for people with disabilities" was first published by Times of Israel [here] on March 6, 2020. Some broken links in that published piece are fixed below.)

It was with deep dismay that I read the op-ed “An Oasis of Caring in the Desert” [New York Jewish Week, February 12, 2010], in which Michal Divon describes her week of volunteering at Aleh Negev, a large, closed and isolated institution housing 220 children and adults with disabilities. It is part of a larger chain of Israeli Aleh institutions.

February marked Jewish Disabilities Awareness, Acceptance and Inclusion Month (JDAAIM) so the world of disability is indeed a timely topic.

But does Divon’s piece advance the cause of inclusion and integration of people with disabilities in our communities? Not likely. Rather it produces the same smoke that Aleh, the largest such chain in Israel, routinely blows in the public’s eyes.

Aleh’s PR team is a slick operation that turns hypocrisy into the sort of hype that resonates with a large contingent of Jewish society. It posits that Aleh’s enterprise is “the ideal” solution. Or the embodiment of “inclusion” in the community. Or just like “a real family”. (Those quotes can be found here, here and here in Aleh’s marketing materials.)

Aleh-style institutions have been shut down throughout the developed world – and in some under-developed countries as well. Yet Israel has gone the other way. Here, such enterprises remain full, well-funded and thriving.

In those countries, the residents of such institutions have been moved – in most cases years or even decades ago – to more humane living alternatives. These include their own families, foster homes or small-scale hostels within the community.

It would behoove a publication like the Jewish Week to delve into the issue and examine it more comprehensively. Perhaps a meeting with Bizchut activists would have dampened Divon’s enthusiasm for Aleh. Bizchut is Israel’s leading advocacy organization for the rights of people with disabilities. It has adopted as one of its three goals “the passage of legislation based on every person with disabilities having the right to live in the community with the assistance that he needs”.

Here is the first of Bizchut’s five core values as listed on its website:

“Independent Living – Promoting the right to live in the community and receive personalized services. Bizchut pursues this goal by exposing the violation of rights inside institutions and calling for a transition from institutionalization to independent living. Bizchut is also promoting legislation that will establish the right of every person with a disability to live independently in the community.”

On the other hand, Aleh’s core values clash head on with mainstream views of care for citizens with disabilities.

A report from the Israeli parliament's Center for Research and Information [Hebrew] presented to the Knesset's Committee for the Rights of Children in May 2019 found that in 2017 (the most recent Israeli data available), 2,740 children with disabilities lived in some kind of out-of-home arrangement. They included hostels, apartments, foster families and assisted living. About half of those children, 1,305, were stuck in institutions, a.k.a. “dormitories”. Only 646 were in foster care.

Following the sudden death in July 2019 of a 29 year old resident, Effie Ben Baruch, at a Haifa institution for people with disabilities, Naama Lerner, Bizchut’s Director of Community Outreach, circulated the following article. (The Hebrew source appeared August 21, 2019, written by Galit Edut is here - the translation from Hebrew is mine.)

Scandinavian states were the first to close such residences for people with cognitive developmental disabilities, in the 1970’s. Both New Zealand and Canada have since done the same. In the US, two thirds have already been shuttered and even in Bulgaria, a less western country, legislation has been passed mandating the closure of all such institutions by 2024 and the transfer of residents to in-community living with personal assistance.
In Israel, the Bizchut organization has been leading the demand for the closure of institutions, which has been ignored for many years. Only in 2011 did the Ministry of Welfare invite five international experts to draft a literature review of the transfer from dormitory residences to in-community living.
“Research findings demonstrate a clear picture: community services are more beneficial than institutional living for the totality of people with cognitive developmental disabilities”, they stated.
The request for a literature review arrived four years after Israel signed the UN Treaty for the Rights of People with Disabilities wherein paragraph 19 determines that “The State must ensure that people with disabilities will be able to choose where and with whom they live as any person is free to choose and that they will not be forced to live in a specific living arrangement.” [Translated by me from the Hebrew source]

Unfortunately, many Aleh supporters, donors and well-intentioned volunteers like Divon are unaware of the above information. They have internalized Aleh’s disingenuous PR and are convinced that, as Divon’s op-ed claimed, isolating people with disabilities in large, closed institutions “reinforces them as equals” and embodies their “inclusion” in mainstream society.

Sadly, that op-ed helps further entrench institutionalization. Instead, we need greater awareness of the fact that Israel’s generous subsidies for such places mean minimal funding for the truly inclusive alternatives.

As Aleh’s own marketing material reveals, the lion’s share of its operating budget, 85%, comes from government sources. In other words, Israeli taxpayers. Like me.

Do Divon and donors realize their support is a drop in the bucket relative to Aleh’s government resources?

As the mother of a 24 year old daughter, Haya, who is profoundly disabled, I am personally affected by Aleh’s operations. My child is left with precious little by way of government assistance in order for her to live at home with her family. When she aged out of the educational system at 21, several teachers at her school for the blind and multiply handicapped were surprised to learn that my husband and I wanted her living with us. They presumed we would institutionalize her, perhaps at one of Aleh’s facilities.

Because that’s what’s available. There are really few viable options and certainly none that would provide her with the benefits that living with a loving family does.

Aleh Negev is indeed “in the desert” as Divon says. But it is more ogre than oasis.