Disability Doesn’t Cause Abuse

I gerenally appreciate Harold Doherty of Facing Autism in New Brunswick for his advocacy for better adult autism services, particularly for those with the most severe disabilities. However, his most recent severe autism reality post had me rather up in arms.

In short, Harold describes a situation in 2007 where a severely autistic woman was abused by two staff members at the care home she lived in. I agree with Harold that this is a strong warning that we need better autism services for severely disabled adults. However, what I strongly disagree with, is his allegation that this is an “autism reality”, rather than an abuse reality.

As an argument, Harold tells me that this woman is more vulnerable to abuse due to her disability, particularly her inability to communicate. This is true. However, that does not turn the disability into the cause of the abuse. It would be the same as saying that rape is a “female reality”, because women are far more likely than men to be raped. This is abuse apologism, and I strongly disagree with that.

Of course, we need to identify vulnerable groups of people, and make sure they are protected from abuse. But blaming a characteristic – be it disability or gender or whatever – for the abuse, is not going to solve the problem. You might say we need to help vulnerable groups to protect themselves, for example by teaching a non-verbal autistic to have a way to communicate abuse, but that is not the same as making the disability responsible for what happened. And if someone is unable to protect themself, for example by being so severely disabled that they have no way of communicating, the solution is to protect them from the outside. Either way, abuse of any kind is unacceptable, and calling it a reality of the person’s minority status, suggests otherwise.

ETA: Harold has responded to my blog post at his own blog.

Read Full Post »

Dutch Autistics Receive Poor Care

According to a report by the Dutch Association for Autism (NVA), autistics often get the wrong care. Staff at residential care facilities don’t often know how to handle autism, hence causing autistics to end up on crisis wards or in isolation rooms. The NVA has been collecting stories from mostly family members of autistics about poor care since 2008. I at one point considered submitting my own story from my former ward, but didn’t since I never ended up in a “real” isolation room.

To me, it is obvious that care staff need more education about how to deal with autistic clients. This of course will not prevent outright abuse, since every adult should know that is wrong, but it will prevent unintended harm done to autistics by staff.

Read Full Post »

Judge Rotenberg Center to Be Investigated

As Lindsay of Autist’s Corner reports, an investigation of the Judge Rotenberg Center will finally be done by the U.S. Department of Justice. Unfortunately, the request had to be filed with the argument that the horrible treatment of children with disabilities, including routine use of electroshocks, at the JRC violates title III of the Americans with Disabilities Act, even though this treatment is horrific regardless of whether the students have disabilities or not. It would’ve been much better if the Civil Rights of Institutionalized People Act could’ve been used, but apparently, people institutionalized at private facilities don’t have civil rights. I must say I am rather pessimistic, since the torturous treatment of students at the JRC has been known forever and has been widely criticized and it is still accepted by the government. If any department within the United States government had truly cared, I’m sure it would’ve found a way to investigate the center before.

Read Full Post »

Electroshock and Other Harsh Aversives for Extreme Behavior Problems in the Netherlands

Via one of Michelle Dawson’s comments on why applied behavior analysis isn’t really getting any better than it was back in the 1970s, I came across a study on the effecacy of different forms of electroshock. The study abstract itself was rather vague and sciencey, so I didn’t really understand what it was about – to investigate whether different placement of electrodes produces more pain? -, but what surprised me, was that all three study authors had Dutch-sounding names and that they work at Radboud University in Nijmegen. Is behavioral shocking legal here? I didn’t know.

I Googled Pieter Duker, the corresponding author, and stumbled upon this Dutch article on extreme behavior problems in people with developmental disabilities. The article mentions that arund sixty people in the Netherlands wear shock devices, euphemistically called elctro-aversive therapy (EAT), to prevent them from self-harming or being aggressive. Duker, professor of educational psychology at Radboud University, is apparently an authority on this “treatment”. In one case in which his intervention failed, people at an institution had a police team take their client on walks. It was reasoned that this is the only way to prevent this client from permanent isolation. Duker excuses the extreme measure as a matter of quality of life.

The same goes for the use of electroshocks. According to Duker, while EAT is harsh, it is better than to have a client hit themself into blindness, because “a developmentally disabled person who is also blind, how much quality of life do they have?”. While I will not dispute the fact that blindness or another severe, irreversible injury caused by self-harm, seriously impairs the person’s quality of life, Duker creates a false dilemma here. In a number of cases, the behavior has been escalating for years while institutions were unwilling or unable to access specialist expertise, according to Patty van Belle, director of the Centers for Consultation and Expertise. It seems sometimes necessary to keep the possibility to harsh measures open while cooperating with external experts to find real solutions. In one situation in 2002, the Inspection for Healthcare gave an institution permission to use tear gas on an extremely aggressive client. In its yearly report, it wrote that this gas is not to be used by staff, but the permission was needed to make staff feel secure enough to access external expertise. The tear gas was never used. I don’t really understand this logic, since my experience is that the openness to “last resort” measures actually shuts more doors to real solutions than it opens. How many years have the staff in this institution, or the one using the police to take their client on walks, or every instituttion where EAT is used, been waiting for the clients’ behavior to spiral out of control, anyway?

It is a common misconception, say several people in the article, that behavior problems are just part of the persons’ disabilities. Less aversive behavior methods may have been tried, but not consistently, or not long enough. How many people, really, are not even getting proper functional behavior assessments before a behavior modification method is used? For how many people is their anxiety or distress acknowledged before it spirals down into aggression, so that no aversives will be needed at all? In all bluntness, I refuse to believe that the patients shocked into compliance, are really just as unsalvageable as Duker would have you believe. In reality, most institutions are not even going to look at their own part in the clients’ behavior problems, but blame the disability rather than the interaction of that disabled person with an unsuitable environment. This is not my disability rights opinion (oh well, it is, of course); this is what several people in the article have more or less said. You may call shocking, or any number of other harsh interventions, a last resort measure, but have the institutions really cared to look at the steps that led up to this point? My inclination is that many have not. Not really out of unwillingness, but out of ignorance, staffing problems, and discomfort with hiring external experts in the stages before they need one to authorize shocks.

References

Duker P, Mulder M, and Scheffer N. (2009), Interelectrode distance and warning signal interval and the evaluation of clinical electrical shock. Behavioral Intervention, 24(4):285-293.

Möller I (2003), Instellingen moeten probleemgedrag eerder signaleren. Markant, November 2003.

Read Full Post »

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.

Read Full Post »

Texas Mistreats Its Developmentally Disabled Citizens

I heard about the mistreatment and abuse of Texas developmentally disabled people already several months ago, when the “fight club” mistreatment was first reported. Now that the man who initiated the thing has been sentenced to three years in jail, and after 288 employees of state facilities have been disciplined for mistreatment or abuse, John M. Grohol of World of Psychology writes a post about it again. In particular, he criticizes the fact that the “fight club” had been going on for over a year, and was only discovered because someone accidentally lost his mobile phone and someone else turned it in to the police. He writes:

I’m sorry, but the Commissioner of the Texas Department of Aging and Disability Services, Adelaide (Addie) Horn, should offer her resignation. How could this be happening on your watch – for over a year – and you have no idea it’s going on? How could you oversee a department where 8 percent of your employees
are fired or disciplined for mistreating or outright abusing the people you’re tasked with caring for?

I am tempted to agree. If you don’t know what happens in the facilities for which you are responsible, and these facilities happen to house some of the more vulnerable people in your state, you shouldn’t be having this job. People’s health and possibly even lives are at stake in this situation. The wellbeing of the disabled shouldn’t be dependent on the possibility that someone loses his cellphone.

Read Full Post »

Abuse of Disabled Children by School

This is by far not unique, but that doesn’t make it any less shocking. It’s the inevitable “extrme behavior calls for extreme measures” logic once again, that leads to nothing less than abuse of disabled children. It doesn’t matter what these children may’ve done, this is unacceptable. Besides, it seems this school has absolutely no knowledge of developmental disabilities or mental illness whatsoever, if they think it’ll do fine to just put a kid in seclusion whenever they’re not behaving. I am glad these parents are standing up for their children’s human rights.

Read Full Post »

Commentary on Abuse of Autistics, ABA Programmes, and Behaviourism

Last night, I came across this letter. It is yet another touching example of how children with disabilities are being abused in the name of treatment. I have been reading the writings on Autistics.org for a long while, even though I’m not personally part of the Autistic community anymore. I’m still a person with a disability, and it still touches me that problems of children with disabilities are being dismissed as behaviour difficulties regardless of what caused them. I know hardly any childhood psychiatric or developmental disorder that is truly a behaviour disorder – Opposition Defiant Disorder and Conduct Disorder are in fact the only ones I know, and even those are so far only believed to be purely behavioural.

I have never liked the behaviourist viewpoint altogether. It connotes the idea that others know better than the person himself not only what should be going on (how a person should feel, what he should do, how he should express himself), but also what is actually going on with this person. It is based on empirical experience, and that connotes the idea that another person knows all the motives, feelings and thoughts behind a particular behaviour. No, true behaviourism doesn’t even value thoughts, feelings or motives, but in the human behaviour field it is too often distorted to the idea that “it must be fun to behave this way”, to point the stimulus > response mindset plainly. And even though I agree that each behaviour has a particular function, it is too often assumed that it also always has a particular purpose, with negative behaviour too often along the lines of “attention-seeking”.

Conditioning is something else. I don’t know why it makes sense to say that it works for animals but not for humans, as that is saying that humans are intrinsically superior to animals, which I doubt. But it is still eliciting an automatic response without regard for anything beyond the behaviour. We generally accept that of animals, but with humans it connotes images of Brave New World. It connotes that traumatizing works, on the outside (as with the books and flowers in chapter two of the book), and that’s true, of course, but is it ethical?

With Autistic children, the situation is even more complicated, since Autism isn’t merely a behaviour disorder. In fact, very few disorders in the DSM-IV are. The brains of children with Autism are wired differently from typical brains, and no amount of “clicker training” (excuse my comparison to dogs) will change that. You aren’t making a normal child out of an Autistic child with ABA, you’re making a conditioned Autistic child. That’s unethical, in my view, because it teaches that a child’s identity is wrong. I hae even read about ABA therapists telling the children that what they said they were thinking was a lie, presuming that the therapist knew best what was going on with the child, judging from neurotypical standards, of course. It is teaching the child that what he is, is wrong, not that his behaviour is wrong. And the all too often made statements that these children will “recover” only perpetuates this idea: Autism isn’t a mask under which a normal child is hiding, it’s a *pervasive* developmental disorder (difference, if you wish). These children have neurological differences, and most likely even genetic mutations. Behaviour training won’t do away with that; all it does is to teach the child that his being is wrong and that he should act as if he is somethng he is not.

And that is not even speaking of the unethical ways in which ABA is often performed. You may say that these people are bad professionals, and, even though I’m getting increasingly skeptical of that, it may be true. Still, it is happening, and any form of aversives is, in my view, abuse. Some say that the only sort of aversives they are using are things that autistic children don’t like but would not bother normal children. That’s still abuse, since an autistic child is *not* a normal child.

Read Full Post »