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.

Sunday, January 8, 2017

Boasting about seclusion

This obviously doesn't compare with the death at Aleh Jerusalem in 2000 of a young woman who had been left unsupervised after her meal and aspirated her food [link]. Nevertheless, the isolation and exclusion suffered by the children and young adults warehoused in Aleh institutions is also unforgivable.

Few supporters of Aleh realize that though.

That's evidently why Aleh's PR team saw no harm in publicizing that fact. In a December 26, 2016 release describing a recent train ride organized for several Aleh residents it actually conceded: 
"For most of us, traveling by train is a routine activity. Not so for the residents of ALEH Negev-Nahalat Eran, who recently went on the first train ride of their lives – a very exciting experience... During the train ride, the residents and staff sang songs and gazed, as if hypnotized, at the amazing Negev landscape passing by their windows." [Source:"First Train Ride for Residents of Aleh Negev-Nahalat Eran"]
You'd think they would hide the fact that these citizens with disabilities never get to travel away from their "prison", never see the surrounding landscape, never ride in public transportation although they are perfectly capable of doing so - as this piece and its accompanying photos make clear. Instead, their isolation is proudly broadcasted.

Aleh has cleverly surrounded its large, closed facilities with other enterprises to camouflage them. Thus out-patient therapy centers operate alongside three of the residential institutions.

This week, Aleh announced - with its predictable fanfare and parade of politicians - the construction of a rehabilitation hospital at its Aleh Negev branch. The project will further entrench the institution that warehouses "more than 200 children" with disabilities. It will further shield Aleh from criticisms about the colossal government funding that it enjoys. It will further stymie the push for new legislation granting "assistance baskets" to people with disabilities who live with their families.

Our quest for a suitable home care arrangement for our daughter Chaya is dragging on. It has involved meeting numerous social workers from personnel agencies. Several of them have remarked that our situation is unique because in Israel most children like Chaya simply do not live with their families! The system makes that option unfeasible because it wants these children warehoused in places like Aleh.

So our fight continues.

Sunday, January 1, 2017

Peering behind the walls

Looks can deceive.

The conventional wisdom is that when a large, closed institution for children is clean, aesthetically-designed and decorated, brightly lit and uncluttered and is promoted by the government and by a slick PR agency, that the care within must be excellent.

I hope that the following account will help to dispel that myth.

In May 2000, a small, Jerusalem weekly, Kol Ha'ir ("Voice of the City" - published by Schocken Group who also publish Haaretz), reported an incident that had taken place several days earlier at the Aleh Jerusalem residential facility. It was covered in a two-paragraph article that occupied no more than an eighth of a page.

The story was about the death of an 18 year old girl living at that institution. Instead of paraphrasing it, below is my unofficial translation from the original Hebrew:
Headline: A retarded girl choked to death in the Aleh residential facility
Subhead: The young woman apparently choked from aspiration - inhalation of the contents of her stomach into the lungs. Despite previous incidents of this kind, she was left unsupervised 
The girl, 18, who suffered from mental retardation and motor problems died last weekend at Maon Aleh in the city. The girl choked, apparently.
The girl had received her supper from one of the institution's workers. A doctor at the institution testified that after the girl received the meal, and despite previous incidents of aspiration, she was left unsupervised. "The caregiver came to turn her over and found her totally blue", said the doctor. The girl was taken in serious condition  to Shaarei Zedek [hospital] where she died.
At Aleh's Jerusalem facility
[Image Source: Times of Israel]
The director of the facility, Shlomit Grayevsky, refused to respond to the question of why the institution's staff did not supervise the girl during the meal. "She was in a serious psycho-motor state. The case has been reported as required. Our investigation/checking/inquiries found that everything was proper," she said.
At the time, after reading the report, I made contact with the reporter and asked whether he was following it up. He said that since the girl's parents had opted not to press charges against Aleh, there was nothing to pursue further.

According to the Aleh website, Shlomit Grayevsky, a nurse by profession, remains the director of Aleh Jerusalem to this day.

And just in case anybody is in doubt as to whether Aleh is an institution or just a "rehabilitative village" as its administration call it:
An institution or residential care home for children is defined as a group living arrangement for more than ten children, without parents or surrogate parents, in which care is provided by a much smaller number of paid adult carers... children who live in an institution without a parent for more than three months are ‘institutionalised children’ and the focus of our concern... [Source]
In its 2013 Children with Disabilities report - part of its larger "The State of the World's Children" project [here] - UNICEF made nine key recommendations. They included:
4. End the institutionalization of children with disabilities, starting with a moratorium on new admissions. This should be accompanied by the promotion of and increased support for family-based care and community-based rehabilitation.
5. Support families so they can meet the higher costs of living and lost opportunities to earn income associated with caring for children with disabilities.
I wish the Israeli government, which persists in channeling inordinate funding to Aleh, finally entered the 21st century and adopted these views.