How to solve “behavior problems” without having to learn self-control.

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Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.

Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.

My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.

This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.

The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.

I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?

Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.

Except it didn't work out like that. At all.

My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.

And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.

Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.

From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.

So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.

Needless to say, my being alive at the moment owes a lot to coincidence.

They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.

No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.

10 responses »

  1. it hasn’t changed much, the case mgr can make or break supporting an individual successfully. You illustrated this perfectly so. I can’t thank you enough for sharing your thoughts; it helps me to know I am not imagining system incompetence. Have a sparkling 4th of July.

  2. I’m glad you had the courage and endurance to yell at them when it needed to be done. I don’t even need help with the basic ADLs but I still experience the problem of just getting *tired* of constantly having to oppose and correct people, to tell them that I really do need help with one thing or the other despite how “smart” and “articulate” I seem; to realize in the back of my head that I’m dropping one essential thing so I can tend to another, and at the same time know I don’t have enough brain left to attend to both. What you did to survive shows a lot of resilience and determination. You never should’ve needed to do it, if they had only hired competent people who could actually do their jobs; but the world isn’t perfect, and you did. It’s encouraging to me, because it reinforces the idea that most people are a lot tougher than they think–that when a person needs to do something to survive (or as in my case, stay off the streets and in school), they usually find a way to do it.

  3. Thank you for clearly describing the double (possibly triple or more) bind that people who use unusual supports experience.

  4. Thank you for sharing. Glad that you yelled at them when they needed it.

    I can’t get any help at all — have contacted about 9 different agencies, only to have them refer me to each other and to be told I’m too “high functioning”. The kicker is that I didn’t have a formal interview/intake with the DD people (just emailed to ask them a few basic questions), but they sent me a formal rejection letter anyway. Since I’m labeled with psych labels anyway, the MH people tell me to go to the DD people, and the DD people tell me to go to the MH people. *headdesk*

    Erg. Sorry for venting. Thanks again for sharing your insights.

  5. I’m so glad you got a better case manager! The first one sounds woefully under-qualified (or perhaps just under-trained?) for the job. Thank you for making me think about this. There need to be some important check-lists implemented to make sure that people are getting the services they actually need– especially the most basic, critical things that can so easily slip between the cracks!

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