Monday, January 23, 2017

A bad idea dressed up as good news

The caption in the original article [here] reads:
"The cornerstone-laying ceremony for ALEH’s forthcoming
Neuro-Orthopedic Rehabilitation Hospital in Israel’s Negev region"
Much hype has been circulated recently by Aleh’s tireless PR team about the groundbreaking ceremony it held on January 3, 2017 for a neuro orthopedic rehabilitation hospital. It will be situated in Israel’s south, a region notoriously lacking in medical facilities. 

Everybody is, justifiably, elated that the long-suffering residents there will finally enjoy the services they deserve. Here is some of the coverage it received:
“ALEH Negev-Nahalat Eran is a flagship project in JNF’s major plan for the development of the Negev. Through our fundraising efforts, JNF supports and enhances this remarkable village and will now continue to support the planned Rehabilitation Hospital at ALEH,” said Eric Michaelson, JNF’s chief Israel officer. “The village is attracting doctors, caregivers, teachers and others, stimulating the local economy and with the new hospital will continue doing so,” he said. [JNS, January 5, 2017]

But there is a thorn in this good news. The fact that such an essential medical project is being undertaken by Aleh, Israel’s largest chain of warehouse institutions for children with disabilities, and at its Ofakim-based Negev residential ("village") facility, should raise red flags.

Israel’s government remains alone among developed countries throughout the world in its persistent and lavish funding of such large, closed institutions. The $24 million that it grants to Aleh annually leaves precious little cash for families that love their children with disabilities so much that they want to keep them at home.

The policy that Israel has adopted – promoting, supporting, funding and granting awards to institutions for people with disabilities – translates into the rejection of other options of care. Admittedly, most people who stand up and tout care at home and in the community for people with severe disabilities are shouted down in Israel. “How can you suggest that parents keep such children at home?” “Do you have any idea what an enormous challenge that is?” “Walk in the shoes of such parents for a day before you spout such nonsense!”

The thing is that my husband and I have worn those shoes continuously for twenty-one years. We are painfully aware of what the care-at-home option entails. We know other Israelis like us in this country who have chosen the same path. We also know that some parents who have deposited their children in institutions like Aleh probably would have reconsidered had they been afforded greater government assistance.

Instead, our closed institutions devour the lion’s share of Israel’s cash for children and adults with disabilities. As Aleh’s promotional material (see this Facebook link, and a November 2016 article entitled "ALEH: Tikkun Olam in Action") boasts, "parents pay nothing" toward the care of their institutionalized children!

Aside from the monthly stipend we receive from Bituach Leumi, the government of Israel's National Insurance Institute – which covers mobility, medicines and basic medical needs - we receive no financial assistance toward caring for our child at home. According to the Aleh website, the care of children at Aleh costs $4,300 per month per child, of which 83% is government money. This policy effectively penalizes citizens who choose not to hand their children over to the care of strangers.

The damage that institutions cause to their residents is no secret. Reams of medical research results have been published lambasting that care solution. So why are our decision makers ignoring them?

Enabling Aleh’s closed institution to be the conduit and venue for essential medical services is a bad idea. Developing the depressed economy of Israel’s periphery on the backs of our most vulnerable citizens is a bad idea. Entrenching the enterprise of institutionalization at the cost of in-community and family life is a bad idea.

My husband and I are planning to produce a video clip demonstrating how we live with our daughter Chaya at home. We intend to film her and other people with profound disabilities who, in Israel, would normally not enjoy the love and warmth of family life. If you too have chosen this option for your child or know somebody who has and are interested in participating in this project, please contact us.

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