So there’s this common trick with developmental disability agencies, among many other types of agencies. It’s deliberate, it’s passive-aggressive, and it’s obnoxious.
You start asking them to follow laws, regulations, or agency rules that would require they provide either more or better quality services.
They respond by discovering rules they’d never bothered following before, that allow them to provide less or lower quality services. And then insisting that they absolutely must follow these rules.
I came to Vermont with an IPP. They call them different things in different states. In California it’s IPP (Individualized Program Plan), in Vermont it’s an ISA (Individualized Support Agreement). It describes you and the type of services you need and why, at least in theory. Usually it has goals and ways of reaching those goals.
I had the luck of having a very well-written IPP. My first case manager in California had written an IPP on which I was unrecognizable to anyone who knew me, and she had literally made things up and deliberately left things off. I had signed something saying I had been at the meeting, and she claimed that my signature meant I agreed to everything on the IPP. When I objected, she claimed she wouldn’t be my case manager anymore and I was on my own. (There is a way to be self-managed in California, but it turned out she was lying to me for over a year and someone was listed as my case manager, either her or someone else I never met.) She told me if I didn’t like it, write it myself. I was completely incapable of writing my own IPP. I couldn’t even tell anyone what needed to be on it without being asked the precise right questions and having a great deal of difficulty answering them.
So I ended up contacting a disability rights activist from out of state who had worked in the DD system and written many IPP-like documents in his time. He painstakingly asked me questions over AOL Instant Messenger for weeks and put together an accurate IPP, which then got put in my file as my official IPP, and I didn’t have IPP trouble from there on out. It got modified over the years with time by different case managers but the basics stayed the same. I’m very grateful to that person.
So when I moved to Vermont, my first case manager was as incompetent as my first case manager in California. And part of my IPP involved a section on how to communicate with me in ways that were cognitively accessible to me. I have problems with understanding language, and understanding certain concepts. I often need things explained to me or rephrased. At minimum. He was asking me to do important things, that I couldn’t understand because he used jargon I was unfamiliar with. When I asked him to explain, he either wouldn’t explain or would send over the same stack of papers I couldn’t read. This kept happening, and the more it happened the more he’d insist I agree to do something I didn’t understand what I was agreeing to. And I wouldn’t agree without understanding, and he started failing to communicate with me at all except to demand I agree to this thing.
There were other, worse things going on too, but I want to focus on the IPP.
So my IPP contained an entire section on how to effectively communicate with me. I and my DPA both told him a zillion times to comply with this section of the IPP. They wouldn’t. (We were also asking that they stop sending two staff people who were incompetent to the point of dangerous med errors. And one was crossing lines in terms of religious proselytizing and forcing me to use my own resources to promote his religion.. They kept sending them to my apartment no matter what I said, and if I turned them away I was being charted as “refusing all services” even though there were dozens of staff available to choose from who were able, willing, and even eager to work with me. I was told nobody liked me and I had to take what I could get. So there were other issues happening that we were fighting them over.)
But one day I got a letter in the mail saying that because of what they’d read in the IPP, they were recommending that I go to residential care for my safety and the safety of staff. The only way I could avoid residential care is if I provided detailed documentation from my California psychiatrist and the Regional Center system of my behavior plan. I didn’t have a behavior plan in California, so there were no documents to produce. It turns out they’d found reference in my IPP to past aggressive behavior, and suddenly following my IPP became all-important if it meant shunting me into residential care to get rid of me.
Following the part of my IPP about communication accessibility, of course, never became a priority.
That’s an example of finding the rules they want to follow and then following them to the letter. And doing so entirely as retaliation for asking them to follow some other rule they have no intention of following. And then they can say, “Well you asked us to follow the rules, that’s what we’re doing!” It’s usually in retaliation for making demands. And since it’s within the letter of the law if not the spirit, it can be used to withhold services (including as retaliation) without appearing to break any rules.
So if they start discovering new rules, that’s one thing they might be doing. It’s extremely manipulative on their part. (Agencies always manipulate clients far more than clients manipulate agencies, but are quick to call us manipulative for things that aren’t.)
Sometimes they’ll even make up rules that never existed and pretend they’ve been rules all along. Or create new rules and try to pretend they existed.
At one point I was told that in the 13 years I’d been receiving services from an agency, from a wide variety of staff and case managers, with a wide variety of attitudes towards services, something they’d been doing had been against the rules the entire time. They said nobody had told me until now. I don’t buy it. They just wanted to stop providing a certain kind of assistance, and to claim that to get that assistance I’d have to leave my home. They’ve had no problem over that 13 years telling me when there was a kind of assistance that was against their rules or that they wouldn’t provide, so I don’t buy that it was just nobody felt like they could tell me it was against the rules.
(It involves doing things for me without any pretense of Independence Theater involved. Which, under federal law, they have to do if I can’t do something, or can’t do it consistently or safely. They have never until now given me a shred of trouble over this issue except in the area of community access hours — at which point they had no problem telling me there was an issue — so I don’t buy anything they’re telling me about this.)
This is, again, retaliatory, and in this case pretty vicious retaliation. And manipulative in more than one way. They are attempting to convince me that their “service model” doesn’t support doing what they’ve been doing for the past 13 years, and that therefore I must leave my own home in order to receive the services I need. They are attempting to do this by threatening to (or really going through with) do less and less for me, thereby putting my health and life in danger, and hoping that’ll herd me through the door into their other program. This is both against federal disability law and massively unethical, but they don’t care about either of these things. They get away with it, and they can claim to be following the rules, so they do it. It’s simply an attempt to maneuver me where they want me, and punish me for complaining. If I hadn’t told them to follow the rules, they’d never have discovered this and other rules to punish and maneuver me around with. And they still — of course — magically haven’t discovered any of the rules we’ve been telling them to follow. The actual rules that we know exist.
It should be noted that when I ask agencies to follow rules, it’s generally my safety at stake. When agencies ask me to follow new or arbitrary rules, it’s generally not their safety at stake, and it generally puts my safety more at risk. They have massive power over my life, I have very little over theirs, and this is one way of them misusing their power. The situation is not equal in any way. (More on false equality in another post, hopefully.)
So that’s the basic sequence of events:
- You ask them to follow a rule they are not following, that would help you if you followed it.
- They retaliate by finding a different rule (or making one up), one that hurts or inconveniences you, and following it to the letter. This is punishment for asking them to follow rules.
- They will almost always fail to follow the rule you told them about. If they do follow it, they will try to find ways to follow it in letter but not in spirit, or follow it in as small a way as they can get away with.
- They will, however, follow the obnoxious rule they found or made up, as thoroughly as humanly possible.
- They may say (sweetly and with a smile if they want to be extra nasty and Nice Lady Therapist about it) that they’re only following the rules like you said to do…
And so the mind games continue…