Praise for institutionalization from a senior hospital official?

ADI Negev [Image Source]

I always open the Facebook page of ADI (previously known as Aleh) with the dread that I will see photos of yet another prominent influencer visiting its very well-appointed facilities. Those images would naturally be accompanied by some adulatory speech delivered to the place's founder and CEO, Doron Almog.

And so it was today. Right down to the predictable hyperboles: 

ADI staff members and volunteers... are fully dedicated to every child and young adult and possess the wonderful gift of being able to see the hope and the ability within every disability. We are so grateful to ADI for their incredible work and wonderful partnership! [Archive link]

The culprit this time was Prof. Ofer Merin, director general of Shaare Zedek Medical Center Jerusalem.  His 'offense' against people with disabilities was committed earlier this week.

It is always infuriating when medical professionals in particular laud ADI for violating the rights of people with disabilities by isolating them from the community, locking them up in a large, closed institution. 

Here's what I want to say to them every time I see such a thing:

I mean, really, what did you learn in medical school??? Are you that clueless about experts' views of institutionalization and the damage it wreaks?

Advocates for the human rights of people with disabilities fervently hope that once our new government unveils its position regarding institutionalization and pursues it, Professor Merin will prove to be but an anomaly. 

The new Minister of Welfare, Yesh Atid's Meir Cohen, an educator, a former two-term mayor of the southern city of Dimona and previously a Minister of Welfare between 2013-2014 has yet to address activists' demands for the transfer of those locked in institutions to in-community living in small group homes or with their families. 

Haya at home this week

He will face a challenging job finally propelling Israel's citizens with disabilities into the 21st century..

And while he's at it, he might see to re-educating all of Israel's "Professor Merins"!

Back here at hone, we are persevering with the Ketogenic Diet and still praying that the decrease in seizures will deliver an improvement in Haya's functioning. So far, no sign of that. 

The dietician promised to raise the carbohydrate component of our recipes to attempt to energize Haya. But she (the dietician) is away sick this week so the new recipes haven't arrived yet. 

I have bought another toy to practice pressing on buttons and eliciting sounds and music. At this stage, we need to press Haya's fingers for her. My dream is that she'll learn to do it herself - really quite modest as dreams go, don't you agree?

So, maybe one day?

I haven't resumed her speech therapy sessions yet though our health fund (kupat holim in Hebrew) did agree to subsidize 12 of them. 

At this stage, I am simply not confident Haya will be responsive enough to make it worthwhile.

So what exactly does Aleh stand for?

Haya in today's therapy. The finger pointing
is in response to my question about food. My
non-verbal daughter is saying 'yes'.

How very odd that Aleh is offering a preparatory course for professionals who counsel parents of children with disabilities.

The announcement [Facebook] states that the  course is predicated on the premise that

"parents are the light-tower for families and are the best experts for their children while professionals are their partners and escorts along the way and [the course] will give you workable tools to succeed in escorting parents hand in hand with confidence and professionalism".

How do we reconcile that with that other basic Aleh premise that pervades all of its marketing? That children with disabilities are best cared for in its large, closed instructions where they have, as the Aleh website describes it:

"the best available care and the opportunity to grow and develop to their fullest capabilities."

I once contacted Aleh's hotline, bemoaning the difficulties in caring for my daughter at home and was told by the person manning the service that if I sent her to live in one of their large, closed institutions, I and my husband would "get our lives back".

So Haya gets some food

That's the duplicity that pervades Aleh.

Meanwhile at home today, my daughter Haya enjoyed another "Covid-style" session with her speech pathologist. We've been having them on the balcony of our apartment. But Jerusalem's intense heat didn't allow this afternoon.

So the therapist sat, masked, at one end of our living room while Haya and I sat at the other.

I followed the therapist's instructions as you can see in these still shots taken from our video of today's session.

Haya sticks out her pointer finger when she wants to convey "yes". Getting her to do this has taken us some years of therapy.

Expectations are low and progress is painstakingly slow. That's the way it is with Haya.

The pilot project

Apart from the swing, we also await the launch of that pilot project to which Chaya has been accepted, organized by a unit of the JDC. It will enable us to provide her with our choice of paramedical therapies at home.

The funding for those services will follow the person with the disabilities rather than the therapists.

This is the model that we are advocating for all in order to facilitate de-institutionalization and the closure of warehouses like those of Aleh. 

For now, Chaya receives one session of hydrotherapy per week. But it remains the the highlight of her life. 

Here she is floating, kicking and obviously reveling in the hydrotherapy pool this week.

Welcome to "quality" special education in Jerusalem

I gave a "tremp" yesterday to a woman I recognized from my daughter Chaya's "alma mater".

Of course, I grabbed the opportunity to inquire about the state of the school since C.'s graduation. It had switched, at that time, from the province of an amuta to that of the Ministry of Education. I was curious about the impact that transfer had had. 

The woman couldn't stop gushing about the change. When I asked for details, she noted "various benefits and gifts to the staff" including a reduction in work days from six to 5 per week for teacher's aides, which she is. 

All in all, she concluded, "things are great". 

Then I asked her what the administrative switch had done for the children. Were they receiving more therapies, for instance? (While Chaya attended, the number of therapies per week was piddling. At best, one half hour session per week of physio, occupational, speech therapy and hydrotherapy.)

But rarely if ever did all those eventuate. Therapists would be out for myriad reasons and staff meetings were always held during therapy hours. 

"No", she replied, unhesitatingly. "They receive fewer therapies. 

"But everybody seems pleased," she added. "I haven't heard any parents complaining". 

I choked... This woman was praising the new administration despite its harm to the children. And those children are entrusted to her care. 

Not very reassuring, to put it mildly.

PS We didn't manage to get to the neurologist this week as we had intended. But for now we aren't feeling the urgency.  Chaya has grown weary of that mysterious vomiting and has even cut back on her central fevers. My husband plans to meet the neurologist next week to discuss strategies for reducing seizures, He'll go without Chaya since she's been thoroughly examined by the pediatrician just last week. Yeah, I know, we never seem to give up the fight.