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?

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Calling for Adult Autism Services

Harold L. Doherty of Facing Autism in New Brunswick has written an open letter to the NB government on behalf of caregivers of autistic children and adults, calling on the government to establsih more residential care facilities for autistic adults.

Now I could start a rant on how it is community services that we need, on how no-one should be forced into an institution, no matter how severely disabled they are. This is true, but, through two and a half years in an institution, I have learned that some people may actually prefer to live there, and, for some people, such an environment is in the best interest. This is not to say I advocate forced institutionalization, or that I think the cost effectivenss meme should further erode community-based services for those deemed “too expensive” for them. I, however, advocate for care in a setting the person with disabilities wants to live in. And some actually want to live in residential care.

Of course, if Doherty believes that residential care should replace existing community services, I disagree. Every person who wants to live in the community, after all, should be enabled to. I also would’ve wished Harold had advocated for a broader range of services, including home care programs for autistic adults who want to live with family members or alone, but whose family can no longer provide care due to, for example, being elderly. Maybe it is time that everyone interested in autism services, gets together to advocate for individualized programming for all adults with autism spectrum disorders, regardless of severity of their disability. This may include residential care for some, but it should also include home services and community-based supported housing. I am planning to revive my Dutch healthcare blog, and maybe I can start it with a call on the Dutch government, which, in my opinion, is letting down a number of autistic adults who are falling between the cracks in the long-term care system.

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What Makes Us “Institutionalized”?

Institutionalization, in the context of this post, refers to the overreliance on the institutional structure, that some mental patients are described as displaying, and which is often viewed as a problem by the staff. Cellar_Door of “Not Another Nursing Student Blog…” describes it here and uses two seemingly strange examples, where patients start protesting when the institutional structure is bent in their favor.

I tend to be annoyed when a staff member refers patients as “institutionalized”. The reason it annoys me, is that “institutionalization” is seen in this context to be a problem on the part of the patient, as if there is something intrinsic in them that causes them to be overly dependent on external control. In some cases, this is of course possible, but then it is quite possible that this patient would’ve displayed the same rigid behavior at home. Why is it not called “institutionalization” if someone has the exact same routine everyday and is troubled when its’changed, when that person lives at home? The simple answer is that in that case, the person doesn’t live in an institution.

I find it ironic, in a way, that many acutely mentally ill people, when first hospitalized, are subjected to a rigid daily routine, because they “need structure”, even if they didn’t have any routines at home (and this may’ve contributed to them being in a bad state). But then once the people are no longer acutely ill, reliance on the routines that you were taught were critical, is called “institutionalization”, and you may be forced into flexibility (on the staff’s terms, of course) as a way to “rehabilitate” you.

I can’t help but laugh at the total uselessness of measures that aim to prevent “institutionalization” given the institution framework. An example: at my former ward, eveyrone was kicked out of bed at 8:30 AM. Well, good thing, if you want to stay in the habit of getting up early to go to work, school or day activities. Recreational therapy started at 9:30, so it wasn’t like you had absolutely no reason to get up. But that was about as far as our fabulous keeping in the habit went: we had only one hour of recreation a day, so by 10:30, you were done and could be drinking coffee (at fixed times, of coruse!), smoking, doing nothing or sleeping for the rest of the day. Honestly I don’t see how this helps people stay in any habit: if you go to bed at 10:30 AM, it isn’t like you’ll keep a regular sleep-wake cycle, no matter how often you’re kicked out of bed at 8:30. I know that some hospitals lock people out of their rooms during the day (thank God mine didn’t, cause my room was the only place I could be writing without being disturbed), but if the patients have nothing to do, how will this help prevent passivity? I may be the exception here, but I for one have absolutely no problem getting up on time when I have something to do. On the other hand, I am also the one who will *never* get up at 8:30 just for the sake of it.

Fixed coffee times, meal times, TV times, in some secure units even cigarette times, etc. also weren’t created by the patients. Some patients may find them somewhat useful, like me, but most people I’ve known actually don’t. So when these people have been in the institution for a certain time, and have become accustomed to the idea that coffee is served at 8:00 PM, why is it suddenly their problem if they protest when you get coffee ready at 7:30? In short, isn’t it ironic that deviating from the strict institution structure is okay (even to be appreciated) when a staff says so but “of course” not when the patient wants to deviate? Now that is what I’d really call institutionalization.

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Is Institutionalization Necessary?

Stephanie Lynn Keil commented on my previous post at her own blog. The issue she raises is the one I failed to address properly in that post: whether you’d actually rather starve or be institutionalized. Stephanie writes that she’d rather starve. It is not something that surprises me. In fact, I’d not be surprised if some of the autistics who may starve from lack of services, agree (I never asked, so I don’t know). But should these really be the options?

Stephanie correctly points out that the U.S. healthcare system isn’t the same as the Dutch system, because ours is socialized. This means that healthcare is available to everyone here regardless of income, while in the U.S., many people are uninsured and therefore don’t get even the most basic healthcare services. Even if U.S. residents are insured, it is quite possible that mental health services will not be covered, or not to the same extent as somatic services. (What happened to the Mental Health Parity Act? Did it actually pass?) Waiting lists, at least for outpatient assessment and treatment, are much longer there than they are here. I don’t know about the waiting lists for inpatient treatmenr or long-term residential care in the U.S., so I can’t compare those to our waiting lists. When people are a danger to themselves or others, it is quite likely that they will be warehoused in state institutions, which I’ll eagerly believe provide poor care. Since I’ve never been to one, I can’t make a comparison to our institutions again, but it would be not at all surprising to me if it’s worse there than here. In short, I can imagine that someone would rather starve than have to live there.

However, this state of being caught between a rock and a hard place, only exists on the presumption that institutionalization is necessary and that the quality (or lack thereof) of care delivered, is a given. Stephanie opposes institutionalization. So do I, and so does every autistic I know who could starve from lack of services (FYI: all live in countries other than the Netherlands, so I don’t know their healthcare systems). This is not a matter of I thinking I, or anyone else, is too good for an institution, or somehow has whatever capacities it takes to be “allowed” in the community if the community would just see how oh so capable we are. I, for one, am not capable enough to live in the community (at least, not now) within the limits of the way my country’s system works. But that doesn’t mean the system is right.

It isn’t like, if you need 24-hour supervision for medical reasons, you should have to choose between dying of your medical condition or being warehoused in a large institution where you could die anyway, because you’re not getting nearly the amount of care you need. It isn’t like, if you’re starving because you can’t prepare a meal, remember to eat or even feel when you’re hungry, your choice should be between starvation and being trapped in a state institution, where you could die from abuse or neglect. It is a false dilemma. Oh well, that is, it should be. So why can’t we all get together and fight for disabled people’s – all disabled people, including those with the most severe disabilities – right to individualized care?

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D Is for Dependence

Cellar Door of “Not Another Nursing Student Blog…” has been writing an alphabet of secure psychiatric services, which is mostly applicable to any mental health unit, lately. She’s by now arrived ad D, for diagnosis, danger, drugs and (hopefully, eventually) discharge. However, last night I realized that there is one D that pretty much describes the patient’s engagement with staff, whether the people who tout “rehabilitative” treatment like it or not: dependence.

For clarity’s sake, I am not referring to anything within the patient’s mental or physical condition that causes them to need help with basic self-care, to a feeling of insecurity when staff are not nearby (you know, another patient might actually just kick off that very moment!), or to overreliance on the day-to-day institution structure (so what have you got besides your daily 10:30 coffee, if activities are scarce and you still get kicked out of bed at 8:30 to “stay in the habit”?). These all fall under what nurses mean when they refer to their patients as “institutionalized”. What I actually want to talk about, is the dependence that comes when staff decide, openly or covertly, what’s best for you. And sometimes, practices aimed at preventing “institutionalization” actually fall under this heading, too.

I remember in the early months of my hospitalization often arguing with one particular nurse over whether I should go to recreational therapy. He thought I should, in order to distract myself from bad, meltdown-provoking thoughts. He had a point there, but he didn’t know that I spent most of the time at rec therapy just sitting around doing nothing, and this gave me at least as much opportunity to go round in circles of negativity as just staying on the ward would have. The same nurse proposed almost every week during domestic meeting, that the ward enforce that everyone starts dinner together with a moment of silence and waits for everyone else to be finished before leaving. This was not a matter of cutlery being counted – my ward was not as secure as Cellar Door’s -, but rather, that the apparently “normal” standard of conviviality had to be enforced. The nurse’s argument, after all, always went: “You would do this at home, too.” Now I had practical objections to this rule (that never got enforced during the time I was on that ward): there were always quite a few very unquiet patients, who would not be able to wait for everyone else and who would likely be creating trouble over dinner. I’d rather have the ability to leave before someone starts acting up. Besides, this isn’t home: at home, I for one live alone so don’t have to wait for anyone, but supposing I did, it would not be for sixteen people. “Real-life” scenarios just don’t get carried over to the institution just because the staff proclaim to prevent “institutionalization”.

Of course, these are very minor things, and when I started this post, these were not really the things I wanted to talk about. Rather, I wanted to point out that, just because staff have supposedly embraced “rehabilitation” – which, according to the former student nurse here, doesn’t mean enforcing “normalcy”, but taking the patient’s wishes and goals as a starting point for treatment -, doesn’t mean the staff no longer dictate patients’ lives. Quite strongly so, in fact.

First of all, if you are “dangerous” – ie. if the staff find you annoying (I am the only one who uses the word “danger” in reference to my current time-out threat system, purposefully taking the law literally as it is meant) -, patient rights go out the window right away. It doesn’t matter that you’ve always been informally committed and therefore have to give informed consent for your treatment: “There is no alternative.” So, there. Now of course, the very fact that I’ve been a voluntary patient for two years – and only got threatened with a section once -, may be an explanation for why I let this happen to me: I dread being kicked back to my home, especially with no time to arrange for home support. I’m not sure if the staff instilled this dread in me, since I already told them right away two years ago, that going back into my own home wasn’t likely going to work out. In this sense, maybe I am weaker than the average psych survivor whose writing I read online – or maybe they aren’t involved in institution dynamics when they write anymore.

Secondly, even if you are not “dangerous”, staff might use your weaknesses against you in forcing you to comply. The threat of forced discharge, with very little prep time, has been used to me by my former ward’s social worker a few times, if she wanted me to sign some application form. As I wrote above, maybe it’s just me, but I always at least partly complied if she used such a threat. This social worker was also consistently referred to by everyone as “advocating for my interest”, and it was hard to deny this without offending her, since she did go to great lengths to advocate for me in some areas. Besides, she was the only one who could get me in touch with possible community care agencies, so if I wanted to leave, I needed her anyway. You know, even with all the relevant legal knowledge – I know more about mental health law than quite a few staff -, it is hard to defy someone whom you are dependent on in so many ways. She only used the suggestion (not a threat, just a suggestion in my file somewhere that I wouldn’t have known about if someone else hadn’t read it to me on my explicit request) of limited guardianship once, and I knew full well that this would not have stood any ground had it been taken to a judge. Nonetheless, I was scared.

Lastly, of course, there is no need to use the law against you at all. I can be intimidated by an authoritiarian voice, that says: “No arguing. It’s just a statement. I have decided.” Legally speaking, the doctor hadn’t – the matter concerned my second time-out plan, which I had to give consent for -, but by the time I’d processed what she’d said, she was gone (another tactic: scheduling appointments at 4:45, so that you will already be getting ready to leave). The on-duty staff made it worse, when the nurse who’d attended the discussion with me, refused to talk about it with me because she wasn’t the nurse I’d been assigned to – so why did she attend an important discussion with my doctor in that case? Another “no arguing” and the suggestion that I just might end up in time-out if I continued to act up, and I was silenced. Think this wouldn’t happen now? Think again: I so vehemently told the staff that I’d keep asking for a proper explanation of my third time-out plan until I got one, had been sectioned, had been discharged, or the plan had been abandoned. One nurse told me she’d ask my psychologist about it, but she probably didn’t. Then again, I’d rather keep the relative peace that I’ve been in for the past week, then get another blunt non-explanation like “There is no alternative”. Maybe I get off the plan sooner this way. Probably not. Really, I hate myself for being dependent.

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