November is Caregiving Month. Why it matters in Israel.

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How nice. The United States has given us our own month.

This year’s theme for National Family Caregivers Month, November 2018 is “Supercharge Your Caregiving”.

Now that's so vague, it begs an interpretation. So here's mine:

Galvanize and supercharge the public - enlist them as supporters of Home Caregiving.

So, here goes.

You may be one of those swayed by Aleh's line. Their PR team may have convinced you of their indispensability. You may now share their conviction that our population of people with disabilities could not survive without Aleh's existence - or would suffer irreparable injury if were eliminated.

I don't blame you. You are in good company. Most Israelis have succumbed to the notion that the residents of Aleh's large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order.

But I have learned that the above version is a far cry from the truth. Aleh, Israel's largest chain of closed institutions for people with disabilities, actively solicits residents. 

It literally urges struggling parents to give up their children. Its staff assuages parents' concerns about the negative effects of institutionalization, reassuring the hesitant that they can "remain parents" even after abandoning their children. They assure parents they will be free to visit their children at any time, noting one mother who stops by the Jerusalem branch nightly at bedtime to see her child. They concede that handing over a child is "a difficult process" but ultimately worth it: "You will get back your life" once it's done.

Screen shot from this YouTube video

These promises are made without any knowledge of the child's disabilities or of their severity. One parent was actually phoned by the director-general of the Aleh enterprise, Rabbi Yehuda Marmorstein, who encouraged him to hand over his daughter shortly after the passing of the child's mother. That father relates the phone solicitation on a video proudly publicized by Aleh on its website.

Here in Israel, the belief that caring for children and adults with disabilities within large, closed, isolated institutions is ideal, is gospel. Even organizations that champion the rights of people with disabilities don't tackle this challenge unless blatant abuse of residents has been exposed. And that, as we all know, is not easy. 

Staff members worry they'll lose their jobs if they turn whistle-blower. Parents are fearful their children will suffer consequences if they speak out.

So, as I said, if you have succumbed to Aleh's PR that is understandable and you are not alone. But outside of Israel, it's an entirely different story.

Institutionalization is consistently maligned. For instance, here is a NY Times opinion piece from last week ("The Lasting Pain of Children Sent to  Orphanages, Rather Than Families") highlighting the enormous gap between Israel and the rest of the developed world:

Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages... But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [link] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."

Why is Israel treating its children with disabilities as if it were a poor country? The fact is that the government gives tens of millions of dollars annually to Aleh institutions. Here's how they say it on their website:

Q. What is ALEH’s annual budget?
A. ALEH’s operating budget for all four facilities is about $30 million. The Israeli government provides 85% of that sum, while the rest is fundraised by ALEH through private contributions. This amount does not include capital development projects, which receive 50% funding from the government.

That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve this more cost effectively than through institutionalization.

As the NYTimes piece points out, many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism" is actively solicited by Aleh, which repeatedly posts profiles [here for instance] of overseas volunteers who have who have worked there.  Over a dozen such volunteer "testimonies", as Aleh calls them, currently appear on their website.

And more, from that NYTimes piece about volunteers:

“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. ...But such volunteers might be doing more harm than good... Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away.Volunteers are also perpetuating a system that takes children from their families. The word “orphanage” is a misnomer, because the vast majority of children in orphanages have at least one living parent. These parents give up their children because they are too poor to care for them. What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”

So in November, make your voice against institutionalization heard. Support Israel's parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many of us who institutionalize our children would keep them at home.

Let's follow the lead of other enlightened countries. Could they all be wrong?