Beware what you boast about

In its November 2020 edition, The Lancet Child and Adolescent Health includes a letter [here] signed by six disability activists from several leading NGOs: The Validity Foundation, European Network on Independent Living, Disability Rights International, the International Federation for Spina Bifida and Hydrocephalus, and the International Disability Alliance. All advocate for the rights of people with disabilities. 

Their letter is entitled "Institutionalisation and deinstitutionalisation of children". 

They were responding to an article in a previous edition which had justified "placing children in group homes for so-called short -term placement 'with the objective of child reintegration' and if 'reintegration is not possible or in the child's best interests.'" 

The letter continued:

"...The authors' rationales for placing children in group homes are deeply problematic. Once children are in group homes, temporary placement tends to become permanent, especially for children with disabilities in countries that do not invest in supporting families. The Lancet's own scientific findings on the harm caused by institutions (including small group homes) refute the possibility that such placement can ever be in the child's best interest. Anything less than the right to family life for children with disabilities is discrimination under the UN Convention on the Rights of Persons with Disabilities. The CRPD Committee has said that the core of the right to independent living for children is the right to grow up in a family and 'large or small group homes are especially dangerous for children.'"

Within days of reading the above I watched a video clip posted by Aleh's indefatigable PR people showcasing the skills of a child who resides in a large Aleh institution - not a small group home.

She appears to function on quite a high level both physically and cognitively and Aleh was patting itself on the back for her achievements. 

Haya and her new ear-rings

But the PR folks were contradicting themselves. On their website, they remind donors, ad nauseum, that Aleh residents "have complex disabilities and require intensive support to perform daily activities."

The child in this clip patently does not fit in that category. 

So, why, for heaven's sake, is she locked up in an institution? And why are the anti-institutionalization arguments posed in that Lancet letter absent from any discourse in Israel about the care of people with disabilities? 

The cogent case for deinstitutionalization must finally penetrate the Israeli psyche, its government and its politics. Its embrace by our society is beyond overdue. Its deadline: yesterday!

Here is our Haya modeling her new pair of earrings purchased on line this week from an Israeli shop, closed due to Corona but delivers its items to your door in record time! 

You can't cherry-pick your scientific data

Institutionalized children as depicted in "The science of
early adversity" (The Lancet) quoted in this post

A recent promotional piece ["Joint Educational Activity with Southern Israel Rehabilitation Centers" | August 31, 2020] on the ALEH website describes how its Negev/Ofakim rehabilitation center

was proud to host a forum of health-related professionals from Ashdod’s Barzilai Medical Center, Ber Sheva’s Soroka Medical Center and Macabbi HMO’s Bayit B’Lev... A joint initiative of the various department directors, the forum aims to hold bi-monthly meetings, provide academic activity and ensure that professionals in health-related fields receive ongoing updates regarding advancements and breakthroughs in matters concerning rehabilitation... Discussion moved on to the current COVID-19 crisis and complications stemming from the more serious incidents of illness. Apart from the immediate need to save lives after exposure to the virus, the group discussed and reviewed the authentic need for rehabilitation after initial recuperation...

In their Hebrew Facebook version of this article (which I am translating now to English) but not in the English version quoted above, they then say

"The forum serves to strengthen the link and cooperation between the departments in the hope that they will progress to joint research. Likewise, core subjects of  rehabilitation are being dealt with, challenging clinical cases are presented along with brainstorming sessions to reach solutions".

For an enterprise that prides itself on partnering with "scientific experts", Aleh does a studious job of ignoring the reams of scientific data, relating to the deficiencies of institutionalization - Aleh's primary activity.

Cherry-picking the scientific data is simply not on. Deleting scientific findings to suit your goal of entrenching and expanding your large, closed institutions is deplorable.

Here are just a few of the reputable articles that Aleh.has chosen to disregard.

Ending institutionalisation of children | The Lancet (Editorial) | Published:July 25, 2015

"Childhood is a time when the seeds of a person's future health and wellbeing are sown. Ideally, it happens within a family setting that provides individualised care in a loving, safe, enriching, and happy environment. Sadly, more than 8 million vulnerable children worldwide do not have access to such care and grow up in large institutions or orphanages. Such environments share conditions that can be detrimental to children..."

Institutionalisation and deinstitutionalisation of children | Niall Boyce, Jane Godsland, Edmund Sonuga-Barke | The Lancet Child & Adolescent Health | Published: June 23, 2020 (Archived)

"...This Lancet Group Commission advocates global reform of the care of separated children through the progressive replacement of institutional provision with safe and nurturing family-based care."

The science of early adversity: is there a role for large institutions in the care of vulnerable children? | The Lancet | Anne E Berens, MSc, Prof Charles A Nelson, PhD | Published:January 28, 2015

"It has been more than 80 years since researchers in child psychiatry first documented developmental delays among children separated from family environments and placed in orphanages or other institutions. Informed by such findings, global conventions, including the 1989 UN Convention on the Rights of the Child, assert a child's right to care within a family-like environment that offers individualised support. Nevertheless, an estimated 8 million children are presently growing up in congregate care institutions..."

Children in Institutional Care: Delayed Development and Resilience | Monographs of the Society for Research in Child Development | Marinus H. van IJzendoorn and others | Published December 21, 2011

"...Children exposed to institutional care often suffer from “structural neglect” which may include minimum physical resources, unfavorable and unstable staffing patterns, and socially emotionally inadequate caregiver‐child interactions."

One very early such report appeared over 100 years ago on January 2, 1915 under the title "Are Institutions for Infants Necessary?", by Henry Dwight Chapin MD [online here]:

In considering the best conditions for the relief of acutely sick infants and for foundlings or abandoned babies, two important factors must always be kept in mind: (1) the unusual susceptibility of the infant to its immediate environment, and (2) its great need of individual care. The best conditions for the infant thus require a home and a mother. The further we get away from these vital necessities of beginning life, the greater will be our failure to get adequate results in trying to help the needy infant. Strange to say, these important conditions have often been overlooked, or, at least, not sufficiently emphasized, by those who are working in this field.

Writing about that century-old article, Berens and Nelson, referred to above, wrote in their January 2015 "The science of early adversity" piece that:

Following the publication of this [1915] article nearly a century ago, scientific studies began to document stunted cognitive, social, and physical development among children placed in institutions during key developmental years. In 1989, the UN Convention on the Rights of the Child (endorsed by nearly all countries, although not in the USA) drew upon scientific findings to generate international normative standards, asserting that “the child, for the full and harmonious development of his other personality, should grow up in a family environment, in an atmosphere of happiness, love, and understanding”.

Why don’t we hear ALEH making statements like these?

To the Government of Israel: Listen to The Lancet

I snapped this today

I passed this scene in a park near my home - people with disabilities enjoying themselves outdoors despite Covid-19 and thanks to kind volunteers.

And not locked up in institutions!

Israel's institutions for people with disabilities concede that this pandemic has them in a tight spot. Their resources - financial and human - are seriously depleted. Nonetheless they still insist that institutions are ideal for their residents.

Aleh, for instance, Israel's leading chain of such institutions, is relying on Covid-19 to solicit extra (!) handouts from government and private donors [LINK].

Those of us who oppose institutionalization are baffled.

Obviously the ease with which Covid-19 spreads in large, closed facilities should stress the urgent need to de-institutionalize. We'd expect this pandemic to propel our government to finally promote alternative living options for our most vulnerable population.

So it was with huge sense of vindication that I read recentlly published articles by experts advocating the immediate transfer of citizens with disabilities to families. They view this pandemic as the perfect juncture for that move and note the success of past de institutionalization in North America and Western Europe. Their unequivocal conclusions appear in none other than The Lancet.

a weekly peer-reviewed general medical journal. It is among the world's oldest and best-known general medical journals. The journal was founded in 1823 by Thomas Wakley, an English surgeon who named it after the surgical instrument called a lancet (scalpel), as well as after the architectural term lancet window, a window with a sharp pointed arch, to indicate the "light of wisdom" or "to let in light". The journal publishes original research articles, review articles ("seminars" and "reviews"), editorials, book reviews, correspondence, as well as news features and case reports. [Wikipedia] 

Some excerpts [Source: "Institutionalisation and deinstitutionalisation of children 2: policy and practice recommendations for global, national, and local actors", Lancet Group Commission, June 23, 2020]

Worldwide, millions of children live in institutions, which runs counter to both the UN-recognised right of children to be raised in a family environment, and the findings of our accompanying systematic review of the physical, neurobiological, psychological, and mental health costs of institutionalisation and the benefits of deinstitutionalisation of child welfare systems...We define an institution as a publicly or privately managed and staffed collective living arrangement for children that is not family based, such as an orphanage, children’s institution, or infant home...
A December 2019 UN General Assembly Resolution on the Promotion and Protection of the Rights of Children recognises that a child should grow up in a family environment to have a full and harmonious development of her or his personality and potential; urges member states to take actions to progressively replace institutionalisation with quality alternative care and redirect resources to family and community-based services; and calls for “every effort, where the immediate family is unable to care for a child with disabilities, to provide quality alternative care within the wider family, and, failing that, within the community in a family setting, bearing in mind the best interests of the child.

Same place, same time - my photo

And these bullet point recommendations appearing in the same source, quoted from key recommendations for the December 2019 UN General Assembly Resolution on the Rights of the Child:

• Recognise and prioritise the role of families
• States [emphasis added] are responsible for promoting parental care, preventing unnecessary child separation, and facilitating reintegration where appropriate
• Families have a crucial role in physical, social, and emotional development, health, and intergenerational poverty reduction
• Services delivered to children are most effective when they consider the vital role of family
• Formal alternative care should be temporary
• Care options should prioritise kinship care, foster care, adoption, kafalah, and cross-border reunification...
• States are encouraged to work to change norms, beliefs, and attitudes that drive separation [emphasis added]
• States should recognise that reintegration is a process requiring preparation, support, and follow-up
• Recognise the harm of institutional care for children and prevent institutionalisation
• States should phase out institutions and replace them with family and community-based services
• States should address how volunteering and donations can lead to unnecessary family–child separation
• States should recognise that funding for institutions can exacerbate unnecessary family–child separation and institutionalisation

And these bullet point insights from another The Lancet article published the same day, last month [here]:

• Millions of children worldwide are housed in institutions, although the number appears to have decreased in recent years
• Many countries are increasingly supporting alternative, family-based approaches to care—eg, kinship networks, foster care, adoption, or kafalah
• Residency in an institution is associated with substantial developmental delays and other risks to children
• Longer stays in institutions are associated with larger developmental delays and atypical development in a dose–response manner
• Delays are most prominent in physical growth, brain growth, cognition, and attention; atypical attachments are also seen
• Children show rapid recovery in the years immediately after deinstitutionalisation, particularly in physical and brain growth, although substantial impairment can persist for the most seriously affected children over the longer term

Israeli Knesset members, "states" includes you! 

How many different ways does the message need to be stated before it gets through? Remember, the State of Israel provides its largest chain of institutions, Aleh, with over 80% of its budget.

Lawmakers, listen to The Lancet!