Thursday, October 27, 2016

Aleh's marathon misstep

Israel's mammoth chain of institutions for children and adults with disabilities is constantly publicizing its activities - reprehensible though they are.

Its latest PR announcement reports that several supporters ran in a marathon to raise yet more cash for the flush Aleh coffers.

This is  newsworthy because - as Aleh pointed out - it was the first time that Aleh fundraisers participated towards that end in a foreign marathon.

But it is even more notable because the country which hosted the marathon in its capital, Germany, has been on the road toward de-institutionalization for over a decade.

In other words, Aleh's running fundraisers promoted a system of warehousing people with disabilities in a country that is busy abandoning that very system.

I'd say it's akin to demonstrating in the streets of Israel in support of honor killings in Pakistan, or of female genital mutilation in Somalia or of capital punishment in the United States - all practices illegal or avoided in Israel.

Already in 2007, a scholarly article, "Deinstitutionalization in Intellectual Disabilities" stated that
"In Belgium, The Netherlands, Germany, Spain and Greece the process of deinstitutionalization has recently begun but institutional care is still dominant."
That article reviewed studies of people who had been transferred from institutions to small community settings:
"People (250 were included in the study) were living in a variety of settings, from residential care to independent living. There was no relationship between cost and outcomes although people had a better quality of life in the community than they had had in the institutions." 
A smaller study was reviewed. It involved 30 matched pairs of people with moderate and severe intellectual disability and challenging behaviour. It produced equally encouraging results:
"Consistent with earlier research on deinstutionalization... they increased in adaptive behaviour, choice making and general quality of life."
To all you marathoners out there: How about running to improve the quality of life of our people with disabilities - instead of the finances of our largest chain of institutions.

Sunday, October 23, 2016

Happiness... and really hard decisions

The Feast of the Rejoicing of the Law at the Synagogue
in Livorno, Italy by Solomon Hart, 1850 (Jewish Museum) [Image Source]
As we stand on the cusp of the happiest holiday in the Jewish calendar, I thought it appropriate to share the Dvar Torah that I relate annually at our family table.

The joy of every other holiday in the Jewish calendar is tempered, each for its own distinctive reason.
  • On the New Year, joy is not even mentioned in the Torah at all because of the angst we all experience over our impending judgments. 
  • On Passover, aside from the first day, we don't even recite the Hallel in its entirety (as we do on Sukkot) because the rejoicing over our liberation from slavery is marred by the deaths of the Egyptians and G-d has warned us not to rejoice over the fall of our enemies. 
  • On Shavuot, the Torah only mentions joy once because we are so concerned over the upcoming harvest which would traditionally determine our upcoming economic situation.
But on Sukkot, which follows just a few days after Yom Kippur, when we believe we have been forgiven and adjudged mercifully, we are urged three times to rejoice. Nevertheless, even on this happiest of all holidays, the word "אך" precedes one of the mentions of joy (in Hebrew: שמח).

The word "אך" is an adverb that limits or minimizes. So, the question is: why, even on this happiest holiday, isn't our joy limitless?

The answer given by the Yalkut Shimoni is that, as parents, we are incessantly wracked with worry over our children's welfare. It's just an inescapable aspect of life. Only in the world to come, when we believe that man will be immortal, will this consuming concern vanish.

To this observation I say: "so true".

But I would add that a parent who has buried a child fears for the welfare of his other children even more intensely than others.

Now parents have myriad ways of expressing that constant concern. One parent's assistance can be another's abuse. A treatment for children with severe disabilities demonstrates this divergence in parental attitudes: the attenuated growth treatment (AGT) commonly known as the Ashley Treatment after its most famous recipient.

I wrote about this twice a few years ago when it was a headliner. In the first post, I was supportive. In the second, downright condemnatory. Which, of course, proves not only how decision-challenged I can be but also what complex issues AGT involves.

Ashley [Image Source]
This week I stumbled across a NY Times article on the Ashley Treatment that appeared back in March 2016.

Both sides of the divide - parents who have administered the treatment and those who abhor it - share many core traits. They are all loving, devoted and self-sacrificing toward their children with severe disabilities. They are also committed to caring for their children at home, despite the challenges posed by their profound disabilities.

The distinction between the two camps is a fine but significant one: which measures are acceptable to enable you to keep your child at home? Are there actions which are beyond a red line?

If you're unfamiliar with the Ashley treatment - and disability activists argue that it isn't one at all because no illness is being treated - here is what doctors did to that girl, whose last name has never been released by her family. They administered the estrogen estradiol which effectively reduced her future predicted height by approximately 13 inches. Additionally, she underwent a hysterectomy to preclude the discomfort of painful menses as well as the uterine bleeding that high doses of estrogen can cause, and the removal of her breast nodules to prevent the growth of breasts.

For the treatment to be most effective a careful monitoring of calories was also required. The desired end result is, of course, a shorter, lighter child.

These same measures have been taken by many other parents who congregate at the website and private message board, maintained by Ashley’s parents who have never made their names public, identifying themselves only as “Ashley’s Mom” and “Ashley’s Dad,” or AM and AD. (Their site’s name comes from the endearment given to Ashley and other children like her who spend most of their hours propped up by pillows in bed.)

But then last summer, the Pediatric Endocrine Society published a survey of its members in the Archives of Diseases in Childhood indicating that at least 65 children have received the therapy. (The survey did not break down participants by sex or note whether they had hysterectomies or breast-bud removal.)

And by many doctors’ accounts, the demand for it is increasing even as doctors prefer not to talk about the practice publicly. “You might wonder if we’re getting underreporting,” says David Allen, a co-author of the survey and head of the endocrinology and diabetes department at University of Wisconsin American Family Children’s Hospital. “The survey response rate was only 30 percent. We have no good numbers at this point.

For parents seeking to restrict the growth of a child, the prospect of being able to provide care at home for many years is a strong motivating factor. Yet despite the fact that three out of four people with intellectual and developmental disabilities live with a family member, the assumption that smaller people actually get better care at home — or in any setting, for that matter — is not supported by empirical evidence; no studies have correlated body size with quality of life. There are only the arguments of parents in opposing camps.

The pediatric bioethicist Nikki Kerruish, a senior lecturer at the University of Otago in New Zealand, has analyzed the perspectives of parents who support the therapy and those who oppose it. In the journal Cambridge Quarterly of Healthcare Ethics, she explains that the very definition of “quality of life” is disputed between the groups. Parents who object to curbing growth prioritize their child’s pleasure and comfort but never at the cost of higher-order concerns like bodily integrity and self-determination. They equate “growing” with “thriving.”

No amount of cognitive impairment justifies nonessential medical treatment; growth attenuation is always inappropriate. Conversely, parents who back growth attenuation tend to believe that maximizing pleasurable experiences and minimizing unpleasant ones is the best way to serve a child with extreme disabilities. If this can be achieved by caring for that child as if he or she were a young infant, then that is entirely appropriate.

One common response to critics of the AGT is "don't talk until you've walked in my shoes". Since my daughter Chaya is precisely the type of child for whom this "treatment" is designed, I feel entitled to sound off. That's just one of the (very few) perks of extreme parenting. Another one is that whenever we have had to bring Chaya to Bituach Leumi for a medical re-assessment of her disabilities, I don't sweat. I'm always 100% confident that she will be awarded 100% entitlement.

The number of US doctors who have been approached by parents to administer the treatment is on the rise. A recent survey of the Pediatric Endocrine Society, most of whose members are in the U.S., showed that 32 of 284 respondents have prescribed growth-stunting hormones to at least one disabled child. But my dogged online search didn't turn up even one instance of its use in Israel. If I just didn't persevere enough and you know of such a case please let me know.

I will be very glad to hear your views about this approach to raising a child with severe disabilities.

Tuesday, October 11, 2016

Institutionalization 101

Letchworth Village in Rockland County, New York closed its doors in 1996
Click for background [Image Source]
Some believe that the last word has been said about institutionalization. That while its evils in other countries have been publicized. That Israel is an exception. That its institutions are another breed, are laudable and deserve to be nurtured and supported.

So let me make it perfectly clear: Institutionalization of children and adults with disabilities is unequivocally evil - even here in Israel. Even a la Aleh!

The warehousing of people with disabilities has been and still is being halted everywhere else in the developed world. That same transition must be achieved in Israel. Now. 

Institutionalization in and of itself is now recognized by experts as the worst solution to the challenge of caring for people with severe disabilities.

Here is what a Columbia University lecturer and parent of a child with disabilities wrote after the August 2016 massacre [background here] of people with disabilities in Sagamihara, Japan. 

By warehousing people with disabilities, institutions send the message that they need to be segregated and managed. It becomes easy for their differences to be seen as a shameful and frightening secret that happens to other, less worthy people.
In truth, disability is an aspect of ordinary experience that touches all people and all families at some point in the cycle of life. As disability studies scholar Rosemarie Garland Thomson notes: The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.”
By warehousing people with disabilities, institutions send the message that they need to be segregated and managed. It becomes easy for their differences to be seen as a shameful and frightening secret that happens to other, less worthy people....
James Trent, a professor of sociology and social work at Gordon College, in his 1994 book, “Inventing the Feeble Mind,” describes shifting attitudes toward and treatment of people with disabilities in America since the Colonial era. According to Trent, in the Colonial and early republican eras, “idiots” – as people with intellectual disabilities were known at the time – were recognized members of their local communities. But beginning in the 19th century, the rise of modernity put greater emphasis on normality. A good citizen was one who had the ability to be productive and self-reliant. A new class of professionals emerged whose careers were devoted to managing human health and behaviour.
By the mid-19th century, these changes had contributed to the identification of “feeblemindedness” as a social problem that needed to be identified and treated. Feeblemindedness was a broad category that included people with intellectual disabilities, but also others who were deemed unproductive or immoral, such as immigrants, people of colour and the poor. It became increasingly common to remove the feebleminded and other people with disabilities from their families and communities and place them in institutions. Early institutions in the United States were inspired by French educator Edward Seguin, known as the “apostle for the idiots”. He believed that people with intellectual disabilities were capable of learning and development.
Inspired by Seguin’s success, the first American institutions, led by men such as Hervey B. Wilbur, Samuel Gridley Howe and Henry M. Knight, were dedicated to education and uplift. They were intended as a temporary measure to build residents’ skills and moral character, releasing them as productive members of society.
Within a few decades, the mission of institutions began to shift from reform to permanent custody of the feebleminded. It was hard to find employment for newly reformed inmates, particularly during periods of economic scarcity.
In the early 20th century, the eugenics movement contributed to prejudice against the feebleminded by proposing that they posed a threat to the purity and strength of the nation’s bloodlines...
By the mid-20th century, the rise of a parents’ movement and a series of damning journalistic exposes of facilities like Willowbrook State School and Letchworth Village began to roll back the practice of institutionalisation." 
["Why has Japan’s massacre of disabled people gone unnoticed?", The Independent (UK), August 31, 2016

Note to the Aleh PR team: Beware. Brandishing the euphemism "village" (here for instance) does not cleanse a place of its institution-ness. In fact, the infamous Letchworth was positively buccolic:
"The grounds surrounding the buildings were very plentiful and created lots of leisure space for patients." [Wikipedia]
Campaign poster from REPLACE [Link]
It's important to note that institutionalization had its roots in good intentions and compassion akin to the sentiments of the many misguided supporters of Aleh.

And here are findings of Disability Rights Internationala little-known organization dedicated to investigating the conditions in institutions for children with disabilities, 
The team is small, but they’ve made some genuine advances over the years... An expose of abuse in one particular facility that DRI collaborated on with the New York Times Magazine, contributed to the historic 2006 UN treaty on people with disabilities, which called for disabled people to have the same human rights as the able bodied.“It’s something that we can change,” says Laurie Ahern, President of DRI: “This is really not a complicated problem; this is about donors putting money to families and not supporting orphanages.” ... DRI, Lumos and other organisations including the Replace Campaign all support the idea that we should change this culture of institutionalisation and work on keeping families together, supporting communities, and improving social networks. ...[Their] work has also led to the European Union introducing a policy where European money cannot be used for maintaining any kind of institution... There is also an economic argument, Ahern adds: “It’s so much less expensive for government to support families to [help] children with disabilities go to school, than it is to pay to keep them in an orphanage for a long time. ["Out of sight: the orphanages where disabled children are abandoned", The Guardian, September 26, 2016]
On Yom Kippur, the Day of Atonement, let's remember: There is no  better atonement for the sin of institutionalization than de-institutionalization.