In California, there a lot of developmental disability agencies for supporting adults. Like a ridiculous number. So I’ve seen pretty much the best to the worst and everything in between.
When I moved to Vermont, I knew right away from all the signs I saw, that the developmental disability agency I was with was pretty middle-of-the-road. Some parts of it had things in common with the worst ones I’ve seen. Some parts were better. It’s a huge agency and there’s a lot of variation. But I certainly saw no signs that it was especially good as agencies go.
Yet as soon as I got here I had this entire cheerleading squad of agency staff telling me how wonderful and amazing the agency was. It was weird. I tried to get specifics. What makes it so wonderful? They just told me it was utterly wonderful. I didn’t believe them. I wondered if I’d just joined a cult.
Finally I asked someone to break down — specifically — what made this agency so good.
She said, “Well it’s better than Brandon Training School!”
I said, “That’s setting the bar awfully low.”
Brandon Training School was the state institution for people with developmental disabilities in Vermont. Like all state institutions, it was hell on earth. Larry Bissonette, a former inmate, describes it this way:
Nasty residential better for growing vegetables than people Brandon Training School.
He also says:
Many years ago most of my existence was spent behind the institutional walls of Brandon Training School. I am free of those walls now but attitudinal walls are still very much placing large, enveloped by ignorance, jackets of segregation around the lives of people with disabilities and especially, those that don’t speak.
Referencing the fact that getting out the walls of a terrible institution doesn’t mean everything’s wonderful or that you’re truly integrated into society.
But basically, Brandon Training School was a hellhole, like all such institutions. And pretending that being better than an absolute hellhole makes you wonderful… that’s dangerous. Low standards don’t help anyone.
Part of the medical neglect I experienced from this same agency involved having my staff hours cut in half for awhile and becoming dehydrated enough I almost passed out, setting off a long and ugly chain of events. I kept saying I needed more help the worse my health got as a result of this, and they kept pushing me further and further to perform beyond my limits. This made the health crisis much worse.
What I was told during this was that I was lucky to have staff at all because some people didn’t.
This is also setting the bar horribly low.
Setting the bar this low removes all responsibility from the agency for their failings. (They caused the staffing shortage by prolonged mismanagement.)
Setting the bar this low tells them that it’s not their fault, not their responsibility, not their obligation, if something goes wrong.
I should tell you a story of another agency.
Not the best agency I’ve been in, at all. But better than this one.
There was a week when my staff person was out sick and I was unable to get medication, food, and water.
I somehow made it to agency headquarters, turned on my communication device full volume, and said I wasn’t leaving until I got food and everything.
The head of the agency came into the room. He took me into a little room. He asked me what had been happening.
I told him, and he personally drove me home. He cleaned my apartment. He cooked for me. He got my meds. He got me water.
When people are allowed to act on their conscience, they will do things like this if they see someone in trouble.
I was in much more trouble during this health crisis than I was the day I went in to that other agency and demanded food.
But this agency has a system that absolves people of responsibility and allows them to feel they have no personal, ethical obligation to right a wrong when they see one. They may feel that it is an unfortunate failing of the system, but they will not usually step in and fix things when they see a catastrophe happening or about to happen.
Instead, they will demand we do more. Even if it breaks us. Even if it damn near kills us. Probably has killed some people I’ve never heard of. I assume every time I narrowly survive something, someone else didn’t.
“Some people have no staff at all” is not an answer. It doesn’t make it right that I don’t have enough staff. It’s a statement that the agency is failing its obligations and responsibilities. It is not something to try to make your clients feel lucky about if they get any support at all.
So setting the bar this low has consequences.