Thursday, August 23, 2018

Why my daughter stays at home

I've been learning about my fantasy adult day program. Turns out, it is a reality in LA for young adults like C. I'm happy for my blogger-friend, Elizabeth, whose daughter, Sophie, was admitted to the program after a wait of over a year.

But reading about it also makes me apoplectic. I mean, why don't we have something even remotely similar in these parts?

When C. was about to "graduate" at the age of 21, her school told us about three day programs available in our city. The Hubby and I visited one of them together and he checked out a second. We were the told the third was similar to the one he saw alone. How would I best describe them all? 

Beneath all contempt.

It was a no brainer - we chose to keep C. at home. But, while we knew that none of the programs provided even the basics we didn't have a clear vision of what they could and should offer. Now, after reading about the one in LA that Sophie attends, we do. 

But before I share those details, here was my reaction to the one I checked out:

Mea culpa
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 in our city.

The social worker at C.'s school escorted us and the Hubby drove since I was still wary of taking the wheel after my cataract surgery. It was his second visit to the place and he had earlier conveyed to me in no uncertain terms its awfulness. The idea was to forget all that and assess it with an open mind.

Despite serious efforts to do that, I was, by the end, to put it delicately, very unimpressed. Both by what we saw and what we were told by the director.

The small room we were shown was filled with eight people sprawled out on thin mats - young women C.'s size and age side by side with middle aged men. Two aides were on duty. That translates into two mere mortals changing the diapers and clothing, escorting to the toilet whoever is capable, and feeding two meals per day to eight entirely-dependent individuals.

Needless to say, that is a totally consuming challenge even for two highly trained employees. And these aides by no stretch of the imagination fit that description.

So there isn't a snowball's chance in hell that they could find the time, energy or desire to do what the director assured us they do - namely, to exercise their charges throughout the day according to instruction they've received from the physiotherapist

Now I fully understand why the director told us that tall tale: Because there are only two physio-therapists for the entire center who give each charge a half an hour of therapy per week! When I told her it's a shame that her center is so under-financed and wouldn't it be wonderful if the government subsidized it as generously as it does 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 posited that a generous salary would undoubtedly entice more applicants. Made no headway.

In any case, on both this and the Hubby's previous visit, everyone in the room was lying down on mattresses in mid-morning. Unlike the last time, there was a row of lit candles in the aisle which, we were told, had been placed there for the "yoga session". Hmmm. I have my doubts about yoga and people with disabilities like C's.

And now to explain my mea culpa:

On our way out of the room, and in direct contravention of the Hubby's request, I took a photo of the class. A second after we left it, one of the aides summoned the director back in and tattled on me. The director chastised me and explained that it's an invasion of the privacy of the people cared for there. I showed her the photo which features no faces.

She was appeased, didn't demand a delete and in turn reassured the aide.

I was then rebuked by the Hubby and by the social worker who both maintained that I had, in effect, been magnanimously invited into somebody's home and had betrayed their hospitality. The director would now be suspicious of my intentions in visiting there and would fear my going to the media to report on the visit.

I apologized to everybody but did half-heartedly present this contrary view. The day centers are a service offered by our government. So why forbid a visitor's recording of what's happening behind their closed doors. After all, the charges cared for there are incapable of that. And oral testimony on its own isn't worth very much; it's so easily denied. With faces absent or blurred, where's the crime in a photograph?

Readers, what do you think? I'd appreciate your input.

In LA, the personal aides are assigned to each participant. Home caregivers are invited to help in their training. The participants who are capable, do community volunteer work. Those who too impaired for that, are taken via public transportation on day trips to museums, parks and beaches. They also receive a range of therapy sessions and coaching in Daily Skills. Then there's the socializing with fellow charges. Need I say more?

One added detail: it's publicly funded. And while our government's fiscal situation is dire in comparison to LA's, it does somehow manage to subsidize several large, closed institutions to the tune of thousands of dollars per resident per month. While those who remain at home with their families are fed the crumbs of abysmal programs like the one described above.

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