Saturday, April 9, 2011

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.


  1. What a wonderful op-ed. I wish they'd printed it, as it covers so many important points that their article(s) didn't address. It's also a great story of why some families remove themselves from the lives of people with disabilities, and why it's so crucial that the system encourage rather than discourage involvement. After all, it's clear that Alan's (debatable) tendency to be too loud was a problem for the staff, not for him - and that your involvement led to a better life for him (and, by coincidence, the staff!). Thank you for writing and posting this.

  2. I am writing this for someone who lived at Letchworth Vlg for about 10 years from 1958-1968 and suffered many abuses. She would like to connect with others who suffered at Letchworth in an attempt to heal. She is not fully literate but if you post back here, I'll check back. The reports she shares are just incredible... Thank you and we look forward to hearing from you.