Where is the Family?

In response to a harrowing article on the front page of the Sunday New York Times, about three weeks ago, I wrote the following op-ed to the Times. It wasn't printed, or you can be sure you all would have heard! Funny, though, I didn't notice any op-eds in reponse to this very disturbing article (Abuse and Impunity at New York Group Homes, March 13, 2011). And although it was described as the first in a multi-part series, no other articles on the subject have appeared. Somebody on the editorial staff it seems has been doing a lot of "killing" of reportage. I wonder why. Anyway, below, to the small audience of my blog, you'll find what I had written.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * my (unprinted) Op-Ed

When we would pull up to the grounds of Letchworth Village, one of the large state-run institutions for the developmentally disabled in NY State that in its heyday housed up to 5,000 developmentally disabled men, women boys and girls, we felt like guests at another planet. We were there to pick up my brother and take him out for a drive, but as we signed our names in a large black ledger, no one gave us more than a nod, and we weren’t allowed into the day room, from which the strangest howls and moans emanated, nor the back room where Alan, my brother, slept. Alan would be led by the hand out to the waiting room, usually fitted out in a natty checked suit. (I’ve learned since then those nice clothes were kept aside for visits. Inside the day room, Alan’s worn and generic clothing was frequently covered in feces). But, oddly, we were all dismayed when we learned that Letchworth Village was closing.

My brother, who is now 60, is what they then called profoundly retarded and autistic. He has never spoken a word. When he’s upset he’ll raise his arms and flap his hands wildly.

My parents knew about the abuses. Rivera’s reports on network TV in the early 70’s included Letchworth Village along with Willowbrook. But they, along with the vast majority of parents, objected strenuously to the institutions’ closing, in large part because they feared that there would be poor oversight out in the community.

We were far luckier than the consumers described in the Times article (Abuse and Impunity at New York Group Homes). Alan’s IRA is an airy, light filled home, with a highly competent staff. Alan resides for most of the evening in a large soft armchair, waiting for a hearty home cooked meal. He has learned to smile.

But one line in the piece stood ut for me. “In many cases, the developmentally disabled do not have families actively involved in their lives.”

There are complicated reasons for a parent or sibling to not visit their family member. But one of the less discussed realities is that there’s an uncomfortable relationship between the family member and the staff in these State run group homes. You do a sort of “dance,” as a fellow sibling described it. And this is actually a very large problem, affecting the welfare of our disabled family members.

The one thing that stayed the same was that we still tiptoed around the staff that cared for my brother. We gauged what they wanted from us was – nothing. We were not expected to intervene in any significant way with our family member’s care. My parents accepted this without question. It was only after my father died, and I became Alan’s Legal Guardian that I began to question the status quo.

The issue that ultimately forced me to upend my learned acquiescence felt like a holdover from the institution – namely the persistent use of psychotropic drugs. Without any evidence of a behavior problem, other than a loud vocal “tic,” or involuntary repetitive sound, Alan was on at least three of these, some of them so strong they’re used typically on people with schizophrenia. And, indeed, Alan’s diagnosis was rewritten to include mental illness, so that the drugs could be prescribed. I would sometimes show up to take Alan out for a drive and, indeed, found him excessively groggy.

I swiftly learned it was not easy to budge the meds. I spoke to everyone -- the team leader, the team psychologist, the head psychiatrist of the DDSO, and the director of the DDSO, only to have my request for a trial reduction flatly denied. The reason I was given was that Alan would become too loud. (When I wrote Albany, I was promised an investigation, but soon they stopped returning my calls.)

Finally, a no-nonsense administrator told me that, as Legal Guardian, I had the authority to refuse permission for these types of medications. In other words, I could terminate them just for the asking. Every last drug was eliminated over time, without any negative effect on Alan’s behavior. Even his team now agrees that Alan is a calmer and happier individual.

However, as I write this, I’m experiencing a bit of those old, inherited anxieties -- will speaking out incite staff members to “take it out” on Alan? I know better of course. I now have a reasonably good relationship with Alan’s team. They’ll read this and groan and then we’ll move on.

But for more than two years I stopped attending the yearly review meetings, and no one seemed concerned. I know now that the team should have been worried. Having a family member present at meetings and in their family member’s life is essential.

If people are now wondering what some of the answers are, I suggest that State IRAs actively encourage family members to engage in their child’s or sibling’s life. Family should be made to understand what’s at stake, and that, indeed, they have a precious responsibility. The laws which govern guardianship should be understood by everyone and spelled out clearly for staff and family alike. Perhaps, as they do in non-State run facilities, relatives of all the residents of a house can have the opportunity to meet one another. I think longingly of the private group homes that routinely facilitate family barbecues and parties. These aren’t feel good luxuries. These gatherings are essential to bringing into play the critical, and keenly observant eyes of a family member. Only when you have that kind of oversight, will abuses of all kinds end. Firing the largest abusers is only the beginning of the solution.

For more information on my brother, Alan, and his history, you can see some pictures and clips from the film, Without Apology, a documentary I made about him. www.withoutapology.com

Alan's Birthday Party

This past Sunday we celebrated Alan's birthday (as you may know if you read the post from the previous week) And an interesting time was had by all.

Just the facts ma'am. Al and I picked Alan up at his group home in Rockland County 11 ish Sunday morning. It had been a while, I'm chagrined to say, since I'd visited my brother, and a very long time since I"d come by on a Sunday morning. For whatever reason, I didn't recognize a single staff member. I was guessing turnover, though. Turnover is high at every level. I'm pretty sure that the hourly wage barely tops the minimum. The service-providing organizations have long lobbied the state for pay increases, and I've signed many a letter. Now that the State is cutting back ruthlessly on every front, there's no hope that working at a group home for the developmentally disabled will provide a living wage. Even Alan's service coordinator, who oversees more than 300 cases, works a second job. So, the folks on duty didn't know who I was, and opened the door a bit reluctantly.

This was going to be a short one and I'm off on a tirade about the pay scale for direct care staff. I will master the blogger's haiku one of these days. But not tonight...We asked that Alan be dressed for the cool weather we were about to take him out into. Another peeve. How they dress my brother. They dress him as though he were a child, or an invalid. On this point, I'm all in favor of treating him like the 60 year old man that he had just become! He knows how to put his arms in the coat sleeves, and if given instructions, can probably zip himself up. Never happens. They coddle him, bundling him into his winter jacket, taking one arm and inserting it into the sleeve, then the other, then zipping up the front, straightening the coat for five minutes, and finally pulling his wool cap over his ears. I can't bear it.

But I'm his sister, not his parent, and I reminded myself of that when I brought him to the car (not by the hand!) And once in, as promised, I got the CD player powered up. We had time only for Thelonoius, a beautiful old album that I've listened to, without complaint, on and off for months. No, for over a year now. I can't take it out of the player. Alan, who doesn't speak, or rather only speaks in his own private language of sounds, grunts, squeals, and occasionally alarming shouts and bellows grew silent. He frowned a bit, and sucked his cheeks in, as Sweet and Lovely gave way to Crepescule with Nellie. What was he concentrating on, I wondered and I think I began to frown a bit, wondering.

We reached our destination, The Hudson House, a wonderful eatery on Main Street in Nyack (Henry Hudson, no kidding, is the proprietor), and an extra two thumbs up because they didn't bat an eye at the awkward man whose head angles off in a direction opposite to his body and his feet at another angle still, pulling me into the dining room with a very firm grasp. They seated us at a corner table that was very nicely tucked away.

And then, Alan's noises grew in volume and increased in frequency and I thought sure that heads would start to turn. And it crossed my mind that we should eat and run, or maybe just run. But they didn't turn -- the heads. Alan's service coordinator was there, completely cool, and my cousin and his wife arrived and sat down and took stock each in their own way, but very quietly. Cousin Stanley I think was working to ignore the noisy man in our midst, chatting Al up about work. Donna, Stan's wife, smiled quietly and started to ask questions.

Donna, who has worked over the years with kids with all kinds of developmental and emotional problems was thinking that there had to be a solution. While I was getting myself into a bit of a dither, she was thinking hard. It seemed to all click for her when I mentioned what a nice drive we'd had coming over, listening to Monk on the CD player and how calm Alan seemed. She said, as though she'd had a week to think it over, that she would play the recorder for him. And she was apologetic about not having an alto recorder, but only a soprano, and before I could question her on any of it, she's pulls her coat on and is out the door. Five minutes later, D is sitting across the table, playing some delightful Renaissance melody (Donna is part of an amateur renaissance musical group)

Alan began to sway with a huge motion in time to this incredibly sweet music and most gratifyingly, his noises becamse single deep notes punctuating the concert, few and far between.

I realize that after writing last week about Wolfgang Fasser, this saintly music therapist in Italy, who was profiled lovingly in the film, In the Garden of Sounds, that life did imitate life. Donna had picked up the idea that music can reach and communicate with people who don't have speech, people like Alan. We had (by we, my family and even to some extent his current caregivers) written my brother off. 'You can't communicate with him' was and really still is the message. But D showed the same wisdom as Wolfgang Fasser. Donna was heroic at the Hudson House that Sunday morning, for which I feel so much ----- awe. And gratitude.

We all joked a bit. Was the dining room delighted with the concert? It was both old and very avant garde, I mused, not really caring too much what they thought, and watching as Alan, swaying, sounding off occasionally polished off a plate of chicken salad in record time, tossing a good portion down his shirt. And the Tellemann played on.

(tanleyS inormed me that one of the people dining that morning came over to our table to thank us for the music)

p.s. If you'd like to learn more about Alan's story, you can check out the website about the film I made about him, and us. www.withoutapology.com