Am I asking too much?

I explain about this photo below

I've been learning about my fantasy adult day program. Turns out, it's a reality in Los Angeles for young adults like my daughter Chaya. 

I'm happy for my blogger-friend Elizabeth whose daughter Sophie was admitted to the program after a years-long wait. But reading about it also makes me apoplectic. 

I mean, why don't we have something even remotely similar here?

Back in 2016, when our Chaya was about to age out of the Israeli school system, we found there were three day-programs on offer and we naturally wanted to check them out. My husband and I visited one of them together. He checked out a second one on his own. We were the told the third was similar to the one he saw alone. 

The words that best described them all? Beneath all contempt.

Naturally, we opted to keep Chaya at home instead. 

But while we knew that those programs were unsatisfactory, we really didn't have a clear idea of what such a program could and should offer. Now, after reading about the one in LA that Sophie attends, we do. 

But before I share those details, here's my reaction (written at the time) to the one operated by Elwyn in Jerusalem.

I dutifully submitted to a tour of a day center for adults with disabilities. It's the one that seemed to be the least of the three evils available to our daughter, Chaya. The social worker at her school escorted us and my husband drove us since I had just had cataract surgery. It was his second visit to the place and he had earlier conveyed to me in no uncertain terms its awfulness. But I was aiming to view this place with an open mind.

Despite serious efforts to do that, I was shocked both by what we saw and what we were told by management.

We were brought to a small room filled with eight people sprawled out on thin mats on the floor - young women of approximately our daughter's size and age, side by side with apparently-middle-aged men. Two aides were on duty in the room. That's two individuals to change the diapers and clothing, escort to the toilet whoever is capable, and feed two meals to eight entirely-dependent individuals.

It would be a challenge even for two highly trained employees. 

But these aides by no stretch of the imagination fit that description. So it was unlikely that they would find the time, energy or desire to do what we were assured they do in addition to the above tasks, namely to exercise their charges throughout the day according to instruction they received from the physiotherapist.

It's understandable that the director told us that tall tale: because she also confessed that there are only two staff physio-therapists for the entire center who give each charge a half hour of therapy per week! 

When I noted what a shame it is that her center is so under-financed and how wonderful it would be if the government subsidized it as generously as it does closed institutions, she said: "It wouldn't help. Because it isn't a question of finances. There's just a dearth of therapists willing to work with people as disabled as these."

I suggested a generous salary would entice more applicants but made no headway.

In any case, on both this and my husband's previous visit, at approximately 11:30 am  everyone in the room was lying down on thin mattresses placed on the floor. It was mid-morning. This time, there was a row of lit candles in the aisle which, we were told, had been placed there for the "yoga session". I tried to envision - but couldn't - people with disabilities like my daughter doing yoga.

On our way out of the room, and ignoring my husband's suggestion, I snapped a photo of the class. A second after we left it, one of the aides summoned the director back in and complained about the photo. I was promptly rebuked for invading the privacy of the people cared for there. I showed the director my photo which features no faces. She was appeased, didn't demand a delete and reassured the aide.

I was then rebuked by my husband and by the school social worker, both of whom felt I had betrayed the hospitality of the director who would now be suspicious of my intentions and would fear my going to the media to report on the visit.

While I apologized to everybody, I believe the photo was actually warranted. The day centers are a government-funded service. Why bar a visitor's recording of what's happening behind their closed doors? After all, the charges cared for there are incapable of communicating. And oral testimony alone isn't worth very much; it's so easily denied. With faces absent or blurred, where's the crime in a photograph?

So that's what happened two years ago. Now back to the present.

In LA, the program tailor-trains personal aides for each participant and invites home-caregivers to join in their preparation. Participants who are capable can engage in community work. Those who aren't, enjoy outings to museums, parks, beaches on public transportation. They also receive myriad therapy sessions and, of course, interact meaningfully with their aides and friends.

Need I say more?

One added detail: it's publicly funded. Now, before you admonish me for comparing the fiscal situation of LA with that of Jerusalem, please remember: our government's coffers are wide open for the care of people with my Chaya's degree of extreme disabilities and who are institutionalized. It funds the Aleh chain where their marketing materials speak of a monthly expense of many thousands of shekels per resident per month, much of it funded by the government. 

And what's the option for Chaya and her ex-classmates whose families want them to live at home? Day programs like Elwyn's.