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.
When some people are put in isolation rooms they still continue to self-injure, which would then require restraints and medication.
So, no one knows how to properly care for the most severely disabled and no one really wants to. Those that work at these places are underpaid and their job is very difficult.
But again, we don’t know how to properly care for the most severely disabled, especially those who display severe self-injurious behavior. Isolation rooms, restraints, drugging, etc. is the solution.
You can’t very well stick them in the community, either, can you?
This is no way to live.
Isolation, restraint and drugging with meds whose only result is enough sedation so they will not be able to move (as long as they don’t get addicted to the drugs, the most commonly-used emergency drugs here are benzodiazepines which won’t work if used long-term) are not the solution. They are what happens now for lack of an alternative, you are right about that. I also am not sure whether restraint or isolation can be abandoned 100% indeed; in all states where it is forbidden, it is legal in emergency situations. But in this post, I wasn’t talking about emergencies, I was talking about people locked up in isolation rooms for *months*. Lack of appropriate, qualified care *is* a major factor here (it is also a factor in what staff perceive as an “emergency”, but that was not my point here): because four staff have to attend to 24 severely disabled people, they are likely to lock up the most difficult residents because otherwise they can’t provide the other residents with necessary care. This is as it is now, I know that. But this is *not* how it should be, and there is nothing inherent in a person’s severe disability calling for a 4/24 staff/patient ratio.
I know tha tno-one wants to work with severely disabled people because it is underpaid and staff often have to work in very hard workign conditions. But again, the payment factor as well as a large part of the work stress factor, or not inherent in the residents’ disabilities but int he system in which these people have to work. You can accept that if you want. I don’t.
“Lack of appropriate, qualified care *is* a major factor here”
It’s a major factor everywhere, especially for the most severely disabled.
Of course I don’t accept the conditions but how much better can the conditions really be made? Patients will still have to be drugged and restrained in order to prevent serious self-harm, often for hours a day. Unless, somehow, the severely disabled person had some kind of miracle treatment to prevent such self-harm from happening than the quality of life for that person will still be very low.
Who wants to spend their life in an institution, drugged and restrained?
But, sadly, this is what often happens to the very severely disabled, especially the profoundly autistic since they can be the most violent towards themselves.
Stephanie, how do you know that people with severe disabilities would still be restrained for hours at a time (let alone days or months) if they are given better and more qualified care? As I pointed out in the post, the lack of (qualified) staff is a major factor in why patients cannot even be observed/assessed appropriately, let alone that an intervention/care plan can be developed that will reduce self-harm, or that such a plan can be followed. In fact, in the Netherlands, there was a recent project in I think about 30 institutions for the developmentally disabled and seniors with dementia. The goal was to reduce the use of restraint through awareness of why patients self-harm/become aggressive and alternatives appropriate for each patient. Since I think it was 2006, the use of restraint was reduced by 50%. The goal is to abolish the use of restraint altogether in two years. The reality is, I think it can’t happen, because people cannot provide the care that will prevent self-harm. For example, in a news report on this project I just read, some project leader said “Sometimes taking them on a walk will prevent the need for restraint.” You will say correctly that it won’t work for everyone all the time; I don’t know what else they thought of for preventing the need for restraint. But just so you’re aware of how the system works, at least here: in quite a few cases, people are restrained/secluded because there is no *time* to take them on a walk (or do whatever works for this patient). I am not saying there will be a mirabcle preventive strategy for all people all the time, but I am sure restraint and seclusion can be reduced hugely if the system stops to force the staff to take the “easy way out” because they have no time (or expertise) to provide preventive care/intervention.
Some patients will always have to be restrained for hours at a time, unless there was some way to treat their disorder. But so far, we have nothing and they have a very poor quality of life.
Okay, let me summarize the controversy here: we agree that people with severe disabilities have a veyr poor quality of life in institutions. What we disagree about, is the way to change that. I say that we should focus on changing the system to meet each individual’s care needs, so that their quality of life will improve. You claim this will not work, and that the only way to improve quality of life for some people with severe disabilities, is cure. From your last comment, I don’t understand whether you mean that all or most of the people currently in restraints/seclusion for a long time, fall within your category of those who will only have a better life if they’re cured, or that only a tiny minority fall within this category? My opinion is that it is possible that better care will not prevent restraint for a few people with severe disabilities, but I believe that we cannot and should not write off everyone with severe disabilities unless we actually had a system that provided quality, individualized care to these people. I think it is illogical to judge how patients will cope in a system with quality care, when they currently don’t have this care. As I pointed out, a Dutch project suggests that restraint can be greatly reduced with better care. As a side note, I have never said that medical conditions that contribute to uncontrolled self-injury, should not be treated (eg. pain, rare forms of epileptic seizures, whatever it is in Lesch-Nyhan syndrome that causes self-injury [seem to remember it's some kind of pain condition but not sure]). However, it is absolutely inappropriate to have everyone with serious self-injury wait in restraints with poor care for the rest of their lives, for the good of maybe some people with certain kinds of subtypes of certain disabilities (after all, we’re not just talking about autism with its likely many subtypes, but many other developmental disabilities), being cured many decades from now. I think no-one will be happy if you go over to an institution full of people in restraints and announce that a cure will prevent restraint for some of the residents by 2080.
“I say that we should focus on changing the system to meet each individual’s care needs, so that their quality of life will improve.”
So, what is the plan, then?
And what is the plan about enabling the profoundly autistic who can only communicate through feces smearing and head-banging to be able to communicate? What technology can be developed for them so that they can communicate?
I am not an expert, so I don’t know precisely. Besides, I wrote a lot about this already in the post and comments, and I’m not going to repeat that. If I may return the question, what is your plan for curing autism? You don’t know that either, but you expect me to have a detailed plan for supporting each individual autistic (all have different needs).
Curing autism doesn’t require supporting each individual. There is an organization working on curing and preventing autism already.
I know many people are afraid that autistic fetuses will be aborted but no one said this had to happen. It would be great if autism could be treated like all other mental/neurological disorders: medication; I believe Risperdal is already approved to treat ASDs. I don’t believe in drugging to death but I do believe in medication when it is required; I take Lithium everyday for bipolar disorder. Since we know that autism is a neurological disorder it seems like some sort of medication that could effect the brain would be developed. People take medication for epilepsy, anxiety, all the “co-morbid” conditions that can come with autism. Why not some sort of medication to treat autism, to aid with communication and lessen sensory problems and whatnot? Something like this could probably be developed.
It just seems that if Neurodiversity was invested in the care and support of ALL on the spectrum than they would’ve thought about this. Perhaps ASAN needs someone one their board of directors who has a vested interest in improving the quality of life for the most profoundly disabled on the spectrum.
Re your comment that a pro-cure organization already exists so that I won’t have to ask you to devise a detailed plan for curing autism: there are pro-support organizations, too, so I disclaim the need to come up with a plan on my own.
Re medication: I never said I oppose drugs. I used to be on Risperdal a few years ago, and the reason I discontinued it had nothing to do with neurodiversity, but with the simple fact that the drug didn’t work for me. If a doctor had suggested I go on another drug, I may’ve gone on it. Other people have stopped or refused to take Risperdal and other antipsychotics because they experience serious side effects. In institutionalized autistics in a 2007 or 2008 study, placebo worked as well in treating aggression as did two different antipsychotics; the study authors hypothetized that these autistics were actually improving due to the increased attention they got from being part of a study. This of course cannot be generalized to all autistics, and, in fact, I know adult autistics who voluntarily take antipsychotics for sensory issues/meltdowns (heck I took Risperdal voluntarily) or antidepressants for repetitiveness or anxiety. I also have never heard any so-called neurodiversity activist say that medications that might help with sensory overload (or with any difficult autism symptom for that matter) are wrong by definition. But just FYI, this is not what pro-cure organizations are working on. They are working on sequencing autistics’ genes so that they can be aborted, or trying out risky and unscientific alternative treatments (chelation etc.).
I never said you did oppose drugs; I never said “Neurodiversity” (whatever that is) opposes drugs.
I never said you, personally, had to come up with a plan on your own. I thought that since perhaps you are much more involved in “Neurodiversity” (whatever that is) than you would know.
Increased attention doesn’t truly help communication skills, which may be a precursor for depression. The extra attention probably helped because whenever the non-verbal autistic had a problem there was someone there to figure out what it was.
And what studies are you referring to, exactly?
I don’t think anyone knows what any organization is truly working on unless they themselves work there.
I am not involved with any neurodiversity organization and I don’t claim to speak for the “neurodiversity movement” (if it exists at all). Nor do I know what the “neurodiversity movement” as a whole would think of what services are appropriate (they likely disagree). If you want to know what ASAN, the main organization associated with the “neurodiversity movement”, thinks, ask Ari Ne’eman. He is usually responsive to critical inquiry; at least, he’s been to mine.
As for the study, I made a mistake: the study didn’t involve autistics specifically, but generally people with cognitive disabilities. It was Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled
trial
The Lancet, Volume 371, Issue 9606, Pages 57-63
P. Tyrer, P. Oliver-Africano, Z. Ahmed, N. Bouras, S. Cooray, S. Deb, D. Murphy, M. Hare, M. Meade, B. Reece
* depression should read aggression
Hello, Astrid. I’m with you. Aren’t their specific reasons and conditions that can cause a person to self harm or engage in things like feces smearing?
I know, even I, who is slow to anger, can go into total rage mode and self injure as a result of that.
You’re right. Better care is needed. A cure could take ages, if there is one. Which most likely there isn’t. Even if a cure was found tomorrow there’s a whole barage of things that would have to happen before that cure is trickled down to people. What about folks who need help and support NOW?
The best thing i think is improving conditions, individualized care, smaller facilities. Things like really understanding why some folks self injure seems to be a lot more useful than just secluding people which is cruel.
There has to be better ways.