Multiple Perspectives on Institutionalization

Back in February of 2008, my treatment team had decided that I should go to a training home for autistics in Deventer. They were somewhat confusing, so at first I thought they meant they wanted me in the so-called workhome there. A workhome is a combined living and working environment in an institutional setting. It is specifically set up for autistics with normal intelligence but severe autistic symptoms and/or comoribid behavior or psychiatric problems. There is a lot of structure, and the residents’ safety is a priority. It is made explicit that, while residents should be encouraged to follow their talents, they should not be overburdened.

In February of 2008, I was enraged that my treatment team thought I needed that. I didn’t need an institution. Okay, I had been admitted to the locked ward with suicidal thoughts, but those were gone. The only reason I was still there, is that no supported living place wanted me. My meltdowns, which apparently made it impossible for any supported living place to care for me, were used against me. I was going to be sent to the training home to unlearn those. Then, I could go back to living completely independently, they promised me, even though that was not my aim. I wanted stability after all. I wanted a place where I would not be overburdened. But I did not need an institution.

Just today, I took a look at the website for a possible future living placement. It is a workhome, and its web page makes it quite clear that it is for the more severely autistic (with normal intelligence), because care classes 5 to 7 are welcomed. I would qualify, being in care class 5. A visit has been planned for July 28, which of course doesn’t mean I will go there, since it isn’t a formal application and there are undoubtedly long waiting lists. I do have a few questions, but they are not about how it is way too protective and I don’t need an institution.

I still think, technically speaking, that I don’t need an institution, because I don’t think the most severe people should necessarily be housed on institution grounds. Ideally, I’d still live in the community, but I do want to be able to access the care I need.

On the other hand, there is a voice in me that says I shouldn’t give in to institutionalization. The voice tells me that I lived for nineteen years without any noticeable impairment other than blindness. If I graduated from a high level high school with high grades, why did I fail college? If I lived almost independently at training home, why do I need so much help now? There are two possible explanations for this: institutionalization and burn-out. There’s a part in me, Jane, that favors the former and tells me to go live independently. And there’s a part in me, Carol, who has always said she can’t hold on. Whom do I choose? Is there a way to protect Carol without keeping Jane from fulfilling her talents?

Read Full Post »

Short Placement and Treatment Plan Updates

I’m stressed out by placement and treatment plan worries, so I’m not inspired to write much. I went to visit a blindness agency in a nearby town last week. They were planning on setting up a supported living accommodation for blind adults in early 2010, but that project got stuck on something bureaucratic that I forgot. Fortunately, they have two older living places, one on their institution grounds and another in the community. Both use to be training homes for people who go to or have recently graduated special education there, but they are planning on turning them into more long-term placements for young adults. The community-based home will have a place by the summer of 2010 and might have one by as early as this November. Both places have 24-hour care apart from 9:00-3:00, because residents are supposed to be at school or work then. That was the main problem that arose during the discussion: I have not enough day activities and am not yet sure where I will get them. We also didn’t discuss my autism-related needs, but we may in the future, since I am not yet officially signed up there. They are supposed to have discussed me in “the team” today and the social worker will call my social worker about the results.

The treatment plan discussion was also last week. That is, the discussion among the treatment team here. I wasn’t present – you are supposed to discuss your treatment with the psychologist and your primary nurse and then they will take that over to the rest of the team -, so I’m not sure what came of it. The psychologist should’ve E-mailed me the plan, but didn’t. If what I discussed with her and the nurse, has been accepted, it sounds quite good. However, I mistrust treatment plans – I’ve learned at my former ward, that if it’s good, it will not be followed anyway.

Read Full Post »

I’m Finally at the Resocialization Ward

Finally, I have been at the resocialization ward for a little over three weeks. When I still resided at the locked ward, I couldn’t believe that I’d really at one point get here, because the transition was torpedoed by one thing or another so many times. First, it was the locked ward’s social worker, who didn’t want me to go here, because she doesn’t work here. Then, it took reso’s psychologists three months to decide to turn me down, based on things they could’ve known at or even before my first interview with them – the fact that I had a time-out threat policy again, for example. Then, I fought for six weeks to first get rid of the time-out system and then get reso to accept me after all. They did, but had a long waiting list. I am not sure whether my transition suffered more delays, but I think so, since a man who had a major, getting-him-to-the-most-intensive-care-ward breakdown the day I was initially turned down by reso, got here sooner than I did. However, at last, I finally got here March 2, but am still afraid to be kicked out after all. My “care coordinator” (primary care nurse) says I won’t, and when I spoke with one of the psychologists last week, she said I at least wouldn’t be kicked off for not being able to make enough progress – people do get kicked off for not *wanting* to get any more treatment, since, oh well, you are not on a resocialization ward to have a government-funded vacation, right? Now I do want to make progress, but I’ve had enough experience with training places to know that not being able to do something is easily mistaken for not wanting to, so I’m still kind of scared.

The blindness agency’s occupational therapist was finally able to come over last Tuesday, and will be able to come over weekly starting April 8. My parents are frustrated, and rightfully so, but unfortunately this is how it works: on all other moves, I had to wait for some time before I could start with mobility training. Of course, it is ridiculous.

Read Full Post »

Went to Deventer on Friday

Went to the Deventer treatment/training place on Friday. At first, the treatment coordinator (psychologist) there just told the same story I’ve been hearing countless times about what this place is all about. Turned out to be even worse than I’d expected: there are not two, but three or four different wards, through which you will be moved during the course of your training. And well, it’s just training, you know? Exactly the kind of stuff I got in Apeldoorn, and which I’ve drawn tired of.

I eventually made it clear. I got frustrated and eventually got to explain about the training I’d already had, what it’d been like, what I’d learned and why I’d still gotten stuck while living independently. The woman then seemed to understand why I didn’t want more of it. You see, I practically have many of the skills to live independently, but cannot access them when there’s a lot on my plate. The woman seemed to understand and got to think about supported living places. She came up with a few, but most certainly have long waiting lists and one she wasn’t sure about. The social worker would be looking into that.

I was afraid I’d be kicked out of here today because of the fact that I’m not going to go to Deventer. Of course, this ward is not the nicest place to be, but the last few times I’ve been to my home, didn’t go too well. Then today the recreational therapist came to me and said he’d been convinced that Deventer was a good place, and I was like: Oh my God, they’re going to nag about it some more! A nurse said that this morning the social worker had infomred the team about the fact that Deventer didn’t seem suitable and that we would be looking into other options, and that the team was okay with that, but I didn’t know this when the recreational therapist made this comment, so I assumed it’d been discussed during the morning team discussion. Apparently not, so I’m not sure how the therapist got to his conclusions, but anyway.

Read Full Post »