Holiday “joy”, and assorted communication stuff.

I am starting to wonder whether disabled people who happen to depend on paid staff for everyday tasks have a very different conception of assorted (secular and religious) holidays than other people do.

I’ve had a relatively new staff person and a completely new staff person this week, which has meant not only a lot of important things not getting done, but also a lot of things that are important for them not to happen keep happening. Meanwhile, my friend has had no staff at all some days and completely new ones for very short periods of time other days.

Which is probably why I’ve ended up mildly dehydrated and both of us have ended up pretty exhausted.

Meanwhile, of course, there’s other things going on. My dog has a UTI. I went to the pain clinic only to get poked and prodded around the neck area and made to turn my head in such a way that, whatever combined effects those had, I ended up vomiting, a lot, a few minutes later, and being queasy the rest of the day. My communication device’s USB port finally completely broke, and the loaner the company had been claiming to be about to send me since sometime in November still hasn’t arrived, nor do any staff people know about that since none of the ones who were here this week were around in November.

But there’s sort of a point to this besides whining. Seriously. ;-)

I’m not sure that a lot of people fully get the point that despite a working communication system, it doesn’t mean I’m going to be able to tell everyone what’s wrong at the moment they need to know it. I might not even be able to make it over to the $30ish computer I got for everyone to leave notes and scheduling information for each other on.

There are projects that have been supposed to happen starting since the day I got services here. They haven’t happened. I don’t know why. I do know that repeating myself about them occasionally doesn’t seem to do much. I’m told people are “working on” them. I haven’t seen the finished product.

I’m supposed to get a handicapped parking placard. Been supposed to for years. Even that, which is simple as projects go, hasn’t happened. Despite the fact that everyone on my support team has strong incentive for it to happen, especially in the winter with the chair and so forth.

I guess I’m not a very good nag. Especially when I find myself only able to communicate things to the people around me that don’t necessarily have to do with everything I need to communicate. There’s this weird assumption going around that if someone really needs to say something, it’ll get said, if they have the means to say it.

I don’t work that way. I have a long medical history, noted in my records (often by the staff who’ve had to deal with the firsthand results), the worst parts of which often result from me not working that way. Which reminds me, several medical professionals in about three different disciplines have been telling me I ought to consult with a surgeon soon. (I have this weird image of pulmonologists sitting around telling gastroenterologists something like, “Do something to keep ‘your’ fluids out of ‘my’ lungs.” I know it doesn’t work that way, but for whatever reason I find it sort of amusing to see people in various specialties as owning assorted sorts of body parts.) But I think everyone thinks it’s someone else who’s going to write the referral, and I haven’t been asking (in part because too much else has been going wrong and for a fairly large part of this month I wasn’t even usually awake). And then when I do talk to that doctor, all possibilities (whether having surgery or not having surgery) are somewhat scary and I’ll have to actually make decisions.

But it’s not even just medical stuff, it’s everyday stuff. I just don’t say it. Can’t always say it. And there’s so much of it. Sometimes the sheer amount of stuff I’ve got to say is the reason I can’t say it. Sometimes it’s the fact that if I told one part of it they’d do the wrong thing and I don’t have the energy to tell them how to do it right. There’s just a lot of stuff not getting done and very little of it that I can communicate about. It’s not that I’m not trying, either. It’s just there’s so much of it. I remember a staff person who got to know me really, really well, who just assumed that (where I lived before) when she left the house I got up and did a lot of stuff. She had no idea that I sat around in one place most of the time, and that this was the reason she would leave when I was in that spot and come back to find me in that spot, despite me having a need and desire to get up for a wide variety of reasons. (She did find out when I turned up with dehydration eventually and she asked a few questions that elicited the answer.)

Ideally eventually everyone will know it or a large portion of it. It’s just amazing to me how haphazard this process is. It turns out I’m some sort of strange beast the agencies haven’t encountered much: I am my own guardian, I communicate for myself, I receive their services, I’m classified by their testing system as severely disabled, and I have no clue how to tell them all this stuff that they normally hear either from their clients or their guardians. Usually, at least ideally, there’s supposed to be some other person pointing out what’s needed, but there’s nobody like that for me. My parents are across the country. I’ve got one friend here who has enough trouble directing her own services. I end up reading assorted manuals designed for everything from physically disabled people hiring their own support staff to parents of disabled adults trying to set up assorted support programs, trying to find something that would contain the lists of stuff that needs to get done around here. Sometimes I find stuff and sometimes I don’t, but nothing fully covers it. So in the meanwhile I just keep getting told how strange I am (first words out of one case manager’s mouth was “Our team (the one for people without roommates) doesn’t deal with people with this many needs this often”, and I spent the rest of the time he was my case manager trying to keep him from forcing a roommate or worse on me.)

Somehow there has to be something that can provoke the list of answers that would allow me to say what needs to get done around here (beyond the checklist assorted staff have already developed on their own). But so far I have not found it. And none of this situation seems fair to either me or to people who have to work for me (but who aren’t told much if anything, and of course with funding this low are not allowed to “shadow” other staff for very long before starting). There also needs to be some central point for information, and so far that’s only partway accomplished (and large, large pieces of it have not even been started, nor am I sure they ever will be unless something changes).