Forced Institutionalization: Loopholes in the Dutch System

Yesterday, s.e. smith wrote a very interesting post at FWD/Forward about forced institutionalization. Specifically, ou discusses a recent legal victory for a woman whom Medicaid tried to force into an institution in 2008. From there on, however, s.e. continues to discuss the more subtle ways of force present in a society that devalues disabled people’s independence and autonomy.

The whole story got me thinking about my own situation and the situation in the Netherlands in general. Firstly, legally speaking, we are not as advanced as the United States where it comes to disabled people’s right to live in the community. There is no equivalent to the Olmstead case here, or for that matter any legislation which rules forced institutionalization discriminatory. Here, we rely on a few bits of long-term care legislation which are theoretically supposed to enable people with disabilities to access care in their own communities, but which in practice are full of loopholes.

First in the line of presumed-to-enable-community-services regulations in the Netherlands is the Community Assistance Act of 2007. This bill moved some home care services away from the national long-term care insurance into the local social care system. The idea was that local communities know their residents best and are best able to provide for their needs. The reality is that some cities grant people more services than other cities, and most people lost services as compared to before the Community Assistance Act. Besides, quality of care went down with along-the-way privatization.

Second and most promising came, in 2008, the “complete pacakage at home”, which is, in theory, an innovative way to get people with disabilities care equivalent to an institutional setting but in their own communities. People can, if they have funding for residential care, request their care provider to provide their services in their own home. However, the biggest loophole here is that the care agency decides whether they want to provide this type of residential care at home. Alternatively, people can, also as of 2008, access a personal care budget for residential care – personal care budgets used to be open to home care only -, so that they can hire their own care professionals. The problem here is with the management of the care money, which the person with disabilities should be capable of themself. Besides, health minister Klink just closed personal care budgets to new applicants until the end of 2010, so those who would, with a personal budget, be able to live in their own communities, are possibly forced into institutions again.

However, even if the law were perfect, which it isn’t of course, that wouldn’t mean all people with disabilities could get the support they needed in the setting they desired. As s.e. writes, legislation doesn’t change bad attitudes. Lack of access to information can be one barrier to individualized care even if the law is behind you. Lack of resources or skills to fihgt a legal fight can be another. I, for one, have the theoretical knowledge to know that I could, maybe, live in the community with the services I need, but I do not have the ability to fight for this.

Besides, the risks of such a non-conventional care arrangement are quite high. Should your support funding be denied – which is easily done with both home and residential supports -, should an agency refuse to provide in-home residential care, or should you not be able to find a care provider, you’re stuck in your own home possibly without care. I, for one, have had more than enough experience with falling apart while in my own home and the consequences it had, that I’m simply too fearful to undertake such a risky care path, even if it could enable me to live in an environment I choose.

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Force and the Informal Patient in the Mental Hospital

One of the more intriguing aspects of mental health law involves, to me, the position of the informal patient. In theory, in the Dutch situation, an informal mental patient has the same rights to informed consent as every other patient in healthcare. In practice, however, there are several reasons an informal patient may actually be subjected to forms of force while in the psychiatric hospital, which a somatic patient would not be subjected to.

First, there is the sliding scale between direction, coercion and force. Some therapies and interventions can be quite directive, and they can still be used with informed consent. Especially on acute and intensive care wards, house rules are usually also pretty strict, and it is hard to tell where these rules actually violate the patient’s individual freedoms. Furthermore, if a patient is informed of the consequences of their refusal to give consent to some intervention, such as the possibility of forced discharge or involuntary commitment, when is this information and when does it become concealed coercion? I, for one, was repeatedly threatened with involuntary commitment and forced discharge in situations which would not have warranted this.

Then, there is the situation in which an acute emergency calls for immediate action, before an emergency order of involuntary commitment can be obtained. For example, if an informal patient attacks someone else or tries to engage in serious self-harm, Dutch jurisprudence has granted health professionals the right to undertake measures, such as seclusion, to avert the imminent danger. As soon as possible, the mayor will have to be called for emergency detention in the hospital under our equivalent of the Mental Health Act.

Lastly, as I said, there is the possibility of forced discharge. A patient who is persistently unwilling to cooperate with necessary treatment, can be forced out of the mental hospital. Certain basic needs, such as for shelter and a minimum level of aftercare, have to be met, but the patient is themself responsible for arranging most services. They have to be allocated “reasonable” preparation time. On my former ward, 48 hours were used, which I for one consider unreasonably short. Note that a person cannot be discharged forcibly for the same behavior that led to the commitment, unless the risk of harm to the other patients outweighs the need of the informal patient, and there is no alternative, such as placement on another ward.

And still, I have caught my former treatment providers in illegal violations of my right to informed consent. Coercing someone into consenting to seclusion may or may not be legal, but executing a treatment plan without consent, certainly is not. It happened to me twice.

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New York Ordered to Move Mentally Ill Out of Group Homes

A judge ordered New York to move people with mental illness out of group homes and into the community. This is a good thing. The state is ordered to open 1,500 supported housing units each year for the next three years, so that most of the people now living in the New York City institutional adult homes can move into their own apartments or small homes. Only those with the most severe mental illness, including those who are a danger to themselves or others, and those who themselves choose so, should remain in the group homes.

This is precisely where my main worry comes in: who are those “most severely mentally ill”? Clay Adams of Comet’s Corner is also concerned. With the cost of rent, a nurse and a healthcare assistant to provide the necessary care, $40,000 is easily reached by those with more serious mental health problems. I, for one, at least used to cost more than that. What will happen to these people, who are truly not “cost effective” by the judge’s standards? My guess is that they will just be left with less than optimal services until or unless they become a threat to themselves and others, at which point they will be steered back into the adult home. No matter how small this number may be according to the mental illness advocates, civil rights are still conditionally provided to those for whom it would be feasible again.

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Proper Care Isn’t “Sitting on Patients”

People are locked up in isolation rooms, restrained, or otherwise severely restricted in their freedom of movement, on a daily basis. A study a few months ago found that, in the Netherlands, between 2004 and 2008, about 150 people have been secluded for a year or longer at a time. For comparison: our country has 16 million residents, and we have about 8,000 Mental Health Act treatment/long-stay orders and the same number of assessment orders each year. This doesn’t count the people locked up for a while only to be isolated again a short while later, or those locked up for months but not yet a year. One such case, which was widely covered in the media in 2008, involved Alex, a severely autistic man in his forties who had at the time the media was alerted, been isolated for over half a year. Alex had been living in a workhome (residential combined working-living placement for autistics) for twelve years, when changes to staffing and client population made him uncomfortable. He started displaying increasing irritability, screaming, damaging objects, etc. He was locked up in an isolation room at his Groningen area institution for several months. At first, he was “mobilized” (let out of the isolation room for short periods) every now and then to go on a walk with a staff member, but after a while, he was secluded 24/7. His staff didn’t want it this way, so they proposed he be transferred to an Amsterdam observation clinic, believing he’d get better care there. As soon as he arrived there, he was, however, put right into the isolation room, remaining there for another several months until his famly alerted the media. He was never formally observed until a Member of Parliament started asking questions, at which point he was let out of the isolation room and actually being observed. We weren’t informed what that observation was supposed to be for or whether it has lead to any constructive intervention plans, and if so, whether these plans have been followed through with, but it looked that his family was eventually relatively content (or of course they were shut up by the clinic).

This story emerged amidst a number of horrifying isolation room stories that made it into the media in the fall of 2008, among them two people dying at another Amsterdam clinic. Some politicians called for the abolishment of isolation rooms. At that point, a well-known psychiatrist spoke up in the media: isolation rooms would still be necessary even if large amounts of funding were pumped into extra staffing, cause “you can’t sit on people to prevent them from self-harming, can you?” Well, I have neither been isolated (time-out rooms are different from isolation rooms), nor been restrained, but indeed, I would say isolation seems better (moreover because restraint is here almost always combined with isolation or time-out). But this reasoning would only be useful if all patients currently locked up in isolation rooms, could actually only be prevented from self-harming by being “sat on” (ie. restraint). This is entirely incorrect, not only because actual attempted serious self-harm or aggression is not the only reason, or even the most frequently used reason, for isolation, but also because people are usually isolated for a far longer time than they are actually threatening.

What does it mean when a psychiatrist says that there is no alternative to isolation? Quite likely, it means that there is no alternative, within the limits of the current situation on the ward that psychiatrist works at or the wards he knows of, that is as cheap, convenient to the staff, and will “fix” the problem behavior as quickly as isolation supposedly would (except for maybe restraint). I don’t know what type of ward that psychiatrist works at, if any (he was speaking on behalf of a professional association), but I have already stated many times that the care provided at the majority of wards, does not allow for such a black-and-white reasoning at all. Indeed, if there’s a ward with 24 people with developmental disabilities and severe self-injurious/aggressive behavior (and I know of such a ward, its director voluntarily participated in a TV documentary), and there are only three or four staff members on each shift, it is impossible to “sit on” a threatening patient, but the reason has nothing to do with ethics. I don’t know what the staff/patient ratio at Alex’s Amsterdam observation ward (or his workhome for that matter) was, but if it’s anywhere like this or even if it’s a little better, it is unlikely that he will be able to be observed at all. But if this is the case, it isn’t anything about Alex that made him “unobservable”.

Besides this quantitative lack of care on most wards, how qualified is the care, really? For example, is anyone on that observation ward Alex was sent to, trained in functional behavioral assessments? I doubt it, since this is not something psychiatric nurses get trained in, and a psychologist can’t go over to the ward to observe the patients on a regular basis. (When a psychologist once mentioned this during a treatment plan meeting of mine, I was probably the only person in the room who knew what he was talking about.) Maybe there are more staff trained in this method on developmental disabilities wards (Alex lived in a psychiatric institution), but I’m not sure. It is easy to blame the patients for their “random” aggression or self-injury (hint: if aggression/self-injury is truly random, have medical causes been ruled out?), but if you were only able to collect random data due to being too busy on an understaffed ward with all the bureaucratic requirements set forth to increase paper tiger “quality”, or due to your lack of training in standardized obsevation methods like FBAs, how would you expect to find anything useful?

And if, by magic, a patient’s behavioral assessment did meet the standards, is the plan developed on the basis of that assessment, going to be followed through? Most likely not, because staff shortage, unqualified staffing, an environment that cannot be controlled to meet the individual’s needs, etc., will again mean the patient doesn’t receive proper support. It doesn’t matter that appropriate support would prevent or significantly reduce acting-out behavior, since the patient has to be molded into the sytem somehow.

I know, again, that this is the way it is now. I know we can’t change it overnight. But I also know that if we accept the reality as it is now, we will be stuck forever with people with severe disabilities (not just autism, but other developmental and psychiatric disabilities) in isolation rooms for over a year. It isn’t like more and better qualified staff could only be used to sit on patients – if that were the case, we could pull out a can of managers and bureaucrats to do that job instead of writing thousands of quality paper tigers. What quality are they writing about anyway? Not quality of care if you ask me.

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Dutch Isolation Cell Controversy

I feel pretty much ashamed of the fact that I haven’t written on this blog about the Dutch isolation cell controversy that’s arisen over the past two weeks, even though I did blog about it extensively on my Dutch healthcare blog. Not that it wasn’t an issue before – it’s been known forever that, in the Netherlands, psychiatric patients are put into solitary confinement far more often than in neighboring countries -, but the recent death of a patient locked up in an isolation cell and the suicide of another patient in the same clinic, sparked a lot of media coverage on living conditions and quality of care in psychiatric hospitals in general and isolation rooms in particular.

One significant problem is that there is not enough staff and staff are underqualified. When I mentioned it to a nurse, he denied it, but I’ve seen an alarming increase in time-out uses since we’ve been structurally understaffed. One nurse told me, when I asked whether my own time-out policy could be terminated, that time-out was needed “if you need more care than we can provide”. Oh well, does that say something about my mental state or about your staffing? The time-ut policy was terminated, but one never knows for how long.

Another issue is that people in isolation rooms cannot be supervised adequtely if there’s not enough staffing. When the nurses don’t have the time to respond to every call in a timely manner, or to check on the patient regularly, it’s no wonder that health or safety issues may go unnoticed.

But another part of the story is really an attitude problem. Isolation should not, and cannot legally be used as punishment, but that doesn’t mean that it won’t happen. It is, actually, only allowed to prevent or avert a situation where the patient causes a threat to himself, other patients or staff. Since when is nagging at other patients or staff, talking to oneself in an irritable manner, or slamming a door (one of my own supposed reasons for time-out), dangerous? Obviously it is not appropriate, but “inappropriate” is not the same as “dangerous”. And what in the world does a time-out policy do about someone “wandering orientationlessly” outside, as I’m reported to have done last June and which was used as the excuse for re-introducing the time-out policy. I used to think that my doctors were always right when they talked about “safety” and “danger” and I must have a really screwed conception of these terms. Now my understanding may indeed be somewhat screwed, but absolutely not in the huge way that my time-out policies have gotten me to think. And if my doctors ever read this and think I’m seriously mistaken, then finally *explain* to me why I am dangerous, and don’t dismiss the matter with an authoritarian “No arguing”.

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Am I Good Enough for Patient Rights?

Today, I feel that I’m not good enough for neurodiversity. It’s Autism Awareness Month in the USA, and of course this means that the neurodiversity activists jump up to interrupt the thousands of autism recovery parents who claim their child was cured by some unapproved and unproven treatment. They always hint at how wonderful autistics are, how their parents should love them for who they are, rather than wanting to turn them into NTs. And yet, there is still some sort of conditionality in disability rights: if you have capabilities, prove it and you will be de-institutionalized, get rid of your chelative and the ABA therapist will stop wastign his behavior modification therapy time on you. Or is it just me?

Today, I read several posts about legislation protecting the rights of people with disabilities, forcing de-institutionalization, etc., mostly from the USA. I’ve also been reading up a lot about Dutch legislation regarding forced commitment and treatment and restraining measures (under which time-out falls in the Netherlands) and seen I should’ve been asked to give consent for my January 24 treatment plan (a patient has the right to informed consent, but I thought that just concerned drugs) and most certainly for the time-out policy because, as a voluntarily committed patient, restraint isn’t possible unless the patient’s given consent. Yet now yesterday a nurse threatened to ask for time-out permission from the doctor again (we removed it out of the treatment plan two weeks ago). I’d decided not to complain about the treatment without consent of last January because it is three months ago, but now that it may happen again, I’m thinking whether I am allowed to stand up for my rights. Or is that just another variation of claiming the right to be autistic – which autistic self-advocates don’t see as a problem, but the rest of the world does?

I didn’t use to know my rights. I know them now. Can I stick up for them? Or is the only way to stick up for my rights, to prove that I’m capable enough to have these rights. The hospital uses whatever definition of me that suits them the best on a given moment: I am good enough if they want me to go to the open ward, but bad enough if they want to put me into time-out.

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Commentary on Forced Medication

Of course, patients aren’t being informed, but as far as I can tell, a girl on my ward was medicated involuntarily today. It’s not that I agree with her on the accuracy of her diagnosis. She hasn’t told me her diagnosis, but she disputes it, and, judging from what she’s told me and other people, I can tell that she’s so psychotic that she doesn’t realize it. But that’s not the point: involuntary drugging is wrong.

It isn’t a safety issue. If someone is a danger to themselves or other people – mind you, not property -, a nurse may justly place them in time-out. One of the nurses here on the ward has told me that it’s policy that they try to use the time-out room as little as possible, but I’m pretty sure the staff here use broader guidelines than the ones I would advocate. But then, if even in time-out a patient continues to be violent, physical restraint may be appropriate – though I am not sure if nurses here are allowed to physically restrain a patient, or if it needs to be a security officer doing so. But that is it as far as preventing a patient from causing physical harm to themselves or others is concerned. Forced drugging is messing with another person’s brain without their consent.

The point is not even that this girl couldn’t make her wishes clear, so that some “she would have wanted this” nonsense logic could be used, like what is being used on children and “low-functioning” adults – because people don’t bother to adjust their communication. No, this girl screamed from time-out that she wasn’t sick and didn’t want treatment. Of course, if you see schizophrenia as a disease because schizophrenic perceptions (delusions as we call them) deviate from the norm, she needs treatment. A few years ago, I read a book written by a psychiatrist, who explained that sometimes the resistance to treatment is part of a person’s disease – for example, paranoid schizophrenics seeing their anti-psychotic medication as poison. But this is enforcing a majority opinion – that the patient’s perception of reality is wrong and undesirable and should be treated with anti-psychotics – upon a minority. So what *is* a good reason to medicate a patient against their will? I’m tempted to ask a nurse about formal guidelines on this, but I’m afraid they won’t answer me cause they don’t want me to be involved with the other girl’s case, and I still don’t have Internet access so can’t look it up. In any case, in my opinion, there is none.

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