This is how the system works, apparently. I called an Apeldoorn placement I’d been offered a few weeks ago, because I had concerns about their supports, and it turns out that I’m falling between the cracks in some of the exact ways that I pointed out a few days ago. I cannot get nearly enough support if I go into that place, because:
- The staff/resident ratio is 1/16 during the day on weekdays and part of the day on week-ends (there’s an emergency staff sleeping over at a nearby place, but that’s not the problem). This would’ve been difficult already in group settings where residents share chores and can rely on each other for help, but it is pretty much impossible if I am to manage a complete household on my own. It just occurs to me that the staff/client ratio could have been higher in non-apartment settings because residence and care are not separated so the support agency gets to pay the rent. I don’t know whether this is a substantial reason though.
- There is no external structure. The support worker claimed that this is due to its being an aparment setting, but all other apartment settngs I know (training home, the other Apeldoorn place on whose waiting list I am, and the one in Malden I slept over at in 2007) do have some external structure, for example by having the option of having dinner or coffee together in a shared part of the complex. The lack of external structure is really one major reason why I couldn’t cope in my own home (and a schedule apparently didn’t help enough): every tiny change in my non-routine, such as an unexpected problem, my persevering on a project for too long, etc., meant I lost track of what I was supposed to do and couldn’t “just do what’s next on my schedule”, and there were no external factors that could get me back on track. As a result (among other reasons), I got overwhelmed by all my chores and still ended up wandering during spare time. For those who think I’m misusing an autism stereotype for an excuse, because I “never had any trouble with changes” or because my parents didn’t have dinner ready at the same time each day, either: this isn’t really what I mean. Rather, I mean that I need *some* reminder that makes sense (and apparently, time-of-the-day alone is not enough), that I will connect to, say, cooking, having dinner, doing laundry, etc. Actually, I think in this sense the fact that I *don’t* have rigid routines, is giving me problems.
- With regard to required independence, you are expected to be able to do the “basics” (the support worker’s word) on your own. The example she gave about cooking is you are supposed to cook for yourself, but can get help with, for example, new recipes. The same sort of thing goes for other activities. Of course, there is the fact of having had very little practice, but that is not my main concern (as I could get some practice now or at the resocialization ward on whose waiting list I am). My main concern is that, even in an optimal state, I can only cook once or twice a week. Microwave meals were invented for a reason, of course, but the same goes for cleaning, shopping, and other duties: I just can’t handle a full week’s chores (and if someone says that I’m just way too adherent to cleaning etiquette, you haven’t seen the mess an awkward, blind person can make, which my college student sister feels more urgent about cleaning up than I do).
With this stuff already, I didn’t even think of mentioning behavior. I just told the woman that I’d try to make an appointment with reso’s psychologist to discuss the matter. The project opens in 1 1/2 weeks, when it is highly unlikely that I will even be at reso yet, and new regulations make it extremely hard to get funding for a transition period. However, in all honesty, even if they could somehow get funding, I think it won’t work out, because, well, executive skills like the ability to structure your own day, taking into account a full week’s duties (plus transition-related duties), are extremely hard, if not impossible, to acquire merely through training.