Apeldoorn Supported Living Place Proves Conditionality of Community Supports

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.

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Why I’m Considering Moving Back into a Supported Living Facility

I had a discussion with Gerda about my living situation yesterday. She told me about two different living facilities – the one in Malden and one in Nijmegen – in which I might live eventually – both have waiting lists. Both are so-called residential facilities. This basically means that, if needed, there is support available 24 hours a day.

At training home, there was this belief about outcomes and which were considered most favourable. My living arrangement is the best possible outcome (aside from living completely without support, but I don’t know anyone who reached that point). Something in between is where there is support available at certain times of the day, such as between 4:00 PM and 10:00 PM – but these places don’t seem to exist here. Yet worse is residential living or so-called “24-hour care”. But is being in a living arrangement where there is always support available if necessary, such a bad thing?

There are several reasons why I consider going back into a living facility with more support available. One major reason is that I can’t seem to deal with not having someone available for support should something unexpected happen. Well, I can delay getting support, depending on what the problem is, for a short while (I rarely freaked out cause someone didn’t help me right away) to several hours (such as at training home when staff had their monthly discussion) to sometimes a full night, but not days. In my currnet situation, even little things overwhelm me cause I’m not sure when I will be able to ask someone for help. Duty lists for the moments when I do have support, don’t seem to work, and sometimes make it worse when support workers stick too much to their duty lists. This difficulty also seems to hold me back in doing things independently: because I’m not totally sure how to do it, and I won’t know what to do when something unexpected happens, I just won’t do it. This goes for stuff like housekeeping and cooking and going places. Though I do all these things, I’ve had more experiences of completely freaking out because something unexpected happened and I had no understanding of how to deal with it, than I would like, and this is not a good recipe for getting me to take risks – which I do think is something one should do if one is to grow.

This capacity to deal with unexpected events, however, is only one skill in living independently. There are many other skills, such as housekeeping, cooking, going places, dealing with paperwork, making phonecalls to people and agencies, etc. All of these were fairly well-developed when I still lived at training home – housekeeping and going places were better, paperwork and phonecalls were not my strengths, but I could deal with some of it -, and all are compromised in my current living situation. This is actually why I believe I would be more independent, not less, when moving into a place with more support available.

Now you all will jump up and tell me that it’s much better to learn to manage on my own. Well, it isn’t about managing or getting by, but you’re right that I’ll need to learn to deal with my current situation – if only it were because if I were to transfer to a living facility, there’d still be waiting lists to overcome. I’m trying to think out ways of dealing with my current situation. For one thing, I’m trying, as much as I can, to develop something like a social network here on the block. This isn’t working all that well so far. I hope I can find new ways of dealing with this issue.

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Thoughts about My Current Living Situation and Second Day in Malden

Today, one of the support workers from my service agency came here to help me with scheduling and making arrangements for going to university tomorrow and on Monday. She also wrote down my concerns about living on my own and will discuss them with Gerda on Monday. I’m pretty scared I misworded myself, cause I said living in my current place is too difficult. It is, as it went over the last several weeks, and I seriously doubt this will get better after class starts, but I don’t want to sound all negative and be told that my subjective experience is not objective reality – one of Arda’s statements when I used to go on and on about how stuff is too difficult.

Later, I lied down on my bed to rest, cause I got very tired from the discussion with this support worker. I at first kept worrying, then fell asleep, then woke up and freaked out in fear and worry. I went to the front room, had dinner and then tried to talk to the staff who’d been here yesrerday, too. She tried to call Gerda, but got the answering machine. Another staff took me on a brief walk and then sat in the garden with me, chatting in order to distract me. It helped mostly, though I still feel a little anxious about having said the wrong things and still don’t know how things will work out. Gerda called back a few minutes ago, and said she can’t do much now, but the other support worker will take me to university tomorrow and then things may become more clear (we’ll ask about some things for university), and on Monday they’ll try to work out how to make things more quiet for me. I hope we’ll get somewhere then, cause it’s still pretty unclear how things will go from next week on.

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I’m in Malden over the Week-End

So, I’m in a living facility in Malden near Nijmegen and will stay here over the week-end. The reason is that last week went very badly and I seriously freaked out, most seriously yesterday. This is likely partly cause I decreased my risperdal dosage cause of those panic attack like symptoms, and partly cause of all the stress of these past few weeks. I went back to my normal risperdal dosage again today after consulting with my family doctor: she now is the fourth doctor doubting the symptoms are from my meds, but even if they are, they’re supposed to go away. This stay here over the week-end should ease my difficult situation, cause week-ends and evenings are the hardest. The proposal was made after my support worker discussed me with a colleague, who will be my support worker starting probably next week. This support worker then called her supervisor, who came up with the idea of sleeping over at this facility.

I arrived here around 5:30 PM. Gerda, the supervisor, was here and so was one of the staff who work here. This facility is a place for people with physical disabilities, so everything is wheelchair accessible – and thereby also short stature accessible. At 6:15 or so, I went to have dinner. The soup and dessert were nice, but the meal was the same quality microwave food I’m used to by now cause meal service provides it, too – in other words, not very good. Now it’s about 7:20 PM and I’m in my room. I’ve not yet found an electrical outlet, which is a bad thing since where would I plug in my computer if not in one?

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