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Friday, October 27, 2006

A Home for the Unwanted?

As many of my readers know, I am the mother of three children with special needs; two of which have firm diagnoses (I'm working on the diagnostic process for the third -- again). However, something I rarely talk or write about is my experiences with individuals with special needs prior to knowing the needs of my children. While some date far back into my childhood, most of those are vague and were rather infrequent.

In adulthood, I worked for a short while at a Community-Based Residential Facility. For those who aren't familiar with the term, it is the "step up" from mental institutions which is currently popular in our country. By those "in the know," i.e. many doctors and medical professionals, these facilities are touted as "better than" institutions, and thus the best option available for individuals with disabilities. While I will agree that these facilities are better than mental institutions, I will disagree strongly that they are not "the best" option. Not even close.

My time at the CBRF in question was short, and I worked mostly at night while the clients, as they were called (which is so much better than "resident" *rolls eyes*), were asleep. However, I did help them through their morning routine.

I went through the training, feeling very optimistic about this job. All the literature, all the videos, all the hype repeated something I honestly took to heart. The message was that it was our job to help these special individuals meet their fullest potential. Unfortunately, the reality was that this message was a crock of shit. I apologize for the language, but anything polite would be far too much of an understatement. One of the first things I was trained how to do once I was actually placed in a residential facility was how to plug someone's nose, just for a second, to get her to open her mouth to take her daily dose of Ensure. Of course, we weren't supposed to do this, but this is how it was done for this particular client. To say the least, I wasn't any good at it -- mostly because I refused to do it.

One client was rather combative. She tended to argue with everything and everyone within her limited compacity. She was one of the most unhappy people I've ever met. My co-workers told me it was because of her disorder -- that this woman simply didn't like to be alive being the way she was -- however, I suspect it had more to do with the fact that she was always bossed around, rarely ever got to make choices for herself, and couldn't push herself out of the corner whenever a co-worker got frustrated and pushed her wheelchair in a corner -- so she could cool down, of course.

I only worked at the facility a short time, because I couldn't stand to watch these people being treated with such indignity and such lack of concern. It was the best paying job I could get, so I tried. One day I was sick with broncchitis and I didn't want to work, because some of my clients had fragile immune systems. However, nobody would cover my shift so I had to come in. It was a difficult night and I didn't get much done, but I was told that would be okay. However, somebody complained.

My boss's boss came to investigate the incident and provide me with my sixty-day review, and after talking to a few other people he took me downstair into an "office" area and asked me some questions. Mostly, he asked whether or not I considered myself a "team player" and why did I insist on trying to do things differently, when the routine of the house was already established. I described the "routine" to him, and asked him if this was what he really wanted me to do. He explained confidentiality rules to me. He explained the legal codes. And then he said, "But this is real, Stephanie. When you're here with these people, the rule books aren't what matters. What matters is staying on schedule." Then, he told me he'd put me on probation and I'd have to have another review in thirty days. He told me, for the good of our clients, I had to be a team player.

I rarely look people in the eye. I'm not comfortable with that. And, when I do, I don't see that "window to the soul" that other people claim to see; I merely see eyes. However, I looked my boss's boss in the eye, and named the "clients" one by one. I told him, "These ladies are human beings, not clients. They're people. I can't treat them like this. They're people. I won't do it." So, I walked back upstairs and said good-bye to each of these women, and I prayed all the way home that God would find a way to shine a light of hope in their lives. I couldn't be that hope. I wasn't strong enough then. And, I regret that.

My Mom worked at a variety of CBRFs for about two years. She had management experience, so she became a Lead; which basically means she managed the household and the staff of a household. She was a light of hope for several people while she was there. But the more she worked, the hard she tried, the less things seemed to change. Eventually she couldn't take it any more, so she left, and she prayed. I would bet she still does pray for those precious individuals.

Institutions are where society sends individuals who are to be forgotten. But, so are Community-Based Residential Facilities. My mother and I have vowed, upon more than one occassion, that my boys would never have to live in such a place. I renew that vow again. And I pray that someday, someday soon, our society will stop trying to forget about the many people with disabilities that discomfit them by their very existence, and remember instead that we are all people, and we all have potential that can be met and expanded upon with effort -- even the "least amongst us."


At 10/30/2006 8:47 PM, Blogger Elizabeth said...

Some government agency is responsible for licensing this facility. It's probably too late now, but you could file a complaint against them. If that doesn't work, going to the media is always an option (and keep a record of the complaint you filed).

I perform inspections of psychiatric facilities on behalf of the New York State Office of Mental Health. Occasionally facilities have been shut down because of the work people like me do. Don't know what type of regulatory entities you have where you live--but there has to be something.

At 10/30/2006 10:22 PM, Blogger Stephanie said...

Thank you. It's been years, so it's too late for anything like that. However, I do try to contact as many parents of newly diagnosed children as I can, trying to provide information that will hopefully make such facilities non-existent in the future. There are ways to keep with all levels of need at home with their families, and I do try to encourage people to look into those options as often as I have the chance. The more people who choose that, the better assistance they'll find in funding those options, which is a big drawback currently. Most people cannot afford the kind of nursing and respite assistance that makes it easier and more manageable. But, in the long run, the expense is not significantly more...it's just the availability of assistance.


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