Brain injury and prisoner health

This is something I have been thinking about since being asked for a submission about the health about people with brain injury who go to prison.  It strikes me that I have hardly scratched the surface.  It would be lovely to hear from anyone who has done work in the area. 

The outlook is not good for those people who do not make a good recovery from brain injury, and studies have consistently found high levels of traumatic brain injury among prisoner populations.  In an Australian study with 200 participants, Schofield, Butler, Hollis, Smith, Lee &  Kelso (2006) found that 82% had a history of at least one traumatic brain injury (TBI).  In New Zealand these figures would be approximately the same, at 86.4% (Barnfield & Leathem, 1998).  Two US studies of death row inmates found that 75% had a history of brain damage and 100% had a history of TBI (Freedman & Hemenway, 2000; Lewis, Pincus, & Bard, 1986).   Fifty per cent of individuals convicted for non-violent crimes had a past history of TBI compared with 5-15% in comparison samples (Sarapata, Herrman, Johnson, & Aycock, 1998).  Violent offenders have also been found to be more likely to have experienced TBI than non-violent offenders (Bach-y-rita & Veno, 1974).   

The lives of the adults with brain injury tend towards a vicious spiral unless they have the committed care of at least one other person.  This is not possible for everyone and so people with brain injury can end up in a variety of more or less unsuitable institutions. These include long stay wards, rest homes, forensic psychiatric units and prisons. Given that many people with brain injury go to prison there are many things that need to be taken into account, including the following:  

 Epidemiology of brain injury in prisons

The general epidemiology of brain injury is in its infancy.  Brain injury is clearly implicated in many of the crimes for which prisoners are incarcerated, although it is difficult to estimate in what way the prison statistics relate to the general community.  It seems clear that brain injury is a significant factor in crimes for which people are caught and sent to prison.  There is more work needed on the specific epidemiology of brain injury in the prison population. In particular studies are needed that differentiate the severity of the injury and relate this to types of crime and patterns of incarceration. 

 Brain injury as a (legal) defence

Generally disability (with the exception of mental health conditions) is not considered a defence in our criminal justice system.  However, in recent years we have come to a greater understanding of the relationship between executive dysfunction and brain injury.  It seems that the judgment of some people with severe brain injury is compromised to the extent that their responsibility for actions must seriously be called into question.  There is an argument that brain injury should be a legal defence in these cases.  However, at present there is a lack of credible expertise that could provide an assessment in these cases.  There are few qualified neuropsychologists and it is outside the area of training of psychiatrists.  It is clear from anecdotal evidence that people with severe brain injury are being incarcerated in situations where they are neither realistically defended, nor are they able to advocate for themselves. 

 There are two subsets of the brain injured population who do not make it into the prison system:

a) those whose families are effective advocates and more research needs to be done on how such families succeed;  and

b) those who have a visible disability accompanying the brain injury, which highlights the problematic nature of the invisibility of brain injury. 

 Those with an invisible brain injury are the “walking wounded” and their behaviour is often labelled “bad”, because this is how it is experienced by others.  The brain injured person is perfectly capable of being dominating, browbeating, overtalking, abusive and uninhibited among other things. They can also be gullible, slow thinking, forgetful, lacking in judgment and communication skills, none of which are admirable traits but all of which can be directly caused by brain injury and can lead to hefty judgments on the part of others.  The person with a physical disability accompanying the brain injury is often exonerated for similar behaviour because people have a way of understanding the cause.

 Executive function disorder makes the person with brain injury particularly vulnerable to being the ‘fall guy’.  This is often the reason why they end up in prison and there are stories that circulate in the brain injury community of people who are known for their naivety who get put away for extended periods of time. These are often people who are incapable of lying and cannot comprehend the concept of plea bargaining. 

The executive function disorder that makes the person with brain injury vulnerable in the community does not leave them when they enter prison.  There is anecdotal evidence of the ways in which this particular group is identified and victimized by other prisoners.  The vulnerability of this group needs to be recognized within the prison as well as in the community. They cannot be made completely safe, but a degree of understanding is called for. 

 The rehabilitative capacity of prison

There are many people with less serious injury, for whom prison can be a way of learning about consequences of actions when everything else has failed.  A well planned prison, which has rehabilitation as well as incarceration as a focus, can provide the kind of structured environment that is ideal for the person with brain injury to learn to deal with rules. One of the effects of brain injury is difficulty dealing with rules and a truism of brain injury rehabilitation is that it is easier to change the environment than the person. Further research is needed to establish trajectories of adults with severe brain injury who find themselves in prison. As a first step communication needs to be established between the prison system and ACC. 

 Anecdotal evidence suggests the structured workshop can be very useful for the person with severe brain injury, who may struggle with the greater freedoms that are given to prisoners at a later stage in their sentence.  Rehabilitation efforts should therefore not only focus on the years prior to release, but should also address the early stages of the sentence when the person with brain injury may have become ready to make gains.  This may go some way to alleviating the familiar vicious cycle brought about by brain injured types of behaviour. 

 Management of medication

Medication has an important, but poorly understood, role following brain injury and it requires strict monitoring.  A variety of drugs may be used in non conventional ways for pain relief (e.g. methadone) or irregularities in sleep (e.g. anti depressants). 

Mismanagement of medication is a human rights issue and there is anecdotal evidence that medication is arbitrarily adjusted on admission to prison and thereafter.  These adjustments may happen if the person is labelled as “drug seeking” or because 4.30pm lockup means that night medication has worn off in the early hours of the morning.  There is also evidence that medication prescription is not being monitored and people can leave prison with multiple drugs all of which are doing the same thing.

Service capture, human rights and family carers

This is a story that I have heard in several different ways over the last few years and so I have fictionalised a version of it here to highlight some of the issues that arise around “service capture” for people who are severely brain injured.   I connect this to the outcome of a recent Human Rights Review Tribunal in favour of family carers. 

“Service capture” describes a situation where there is funding attached to an individual with severe brain injury and a residential facility moves to exclude the family.  They do this because famlies tend to advocate for good care and this is labour intensive.  For example, learning to communicate following brain injury is time consuming and therefore more expensive in terms of staff.    The “service capture” argument is usually based around some version of a story where there family is seen as interfering/not grounded in reality/ not really advocating for the person with brain injury.  This kind of “care” will eventually and inevitably break the spirit of both the brain injured person and their family unless they can find some support.  Incidentally it is also extremely bad training and supp0rt for the paid staff in these facilities, who often get their greatest job satisfaction from just this kind of work.

 In 2008 I was an expert witness in a Human Rights Tribunal (in NZ) about the issue of paying family carers, in situations where there was funding allocated and no paid carers available to do the skilled work necessary.  The Ministry of Health argued very hard against paying families on various grounds that revealed a deep prejudice that was never substantiated by written policy.  One of their arguments was about “equality of outcome for the disabled person”, by which they meant that the residential units were able to provide a better outcome than the families were.  It an example of “service capture”, where services want to keep the funding even though a much better job could be done by families if they had control of the funding. This may seem to be different to the arguments used to stop families from interfering once the person has been admitted to a residential facility.  However, the reasoning is essentially the same – families cannot be trusted to provide good outcomes for the person with severe brain injury. 

My witness, based on doctoral research was able to give empirical support for the concept that families, especially those who are supported, actually do an excellent job. I was also able to demonstrate that people with severe brain injury are capable of making major improvements in their lives many years after the injury and long after they would be expected to plateau.  The improvements were a direct result of sensitive flexible care on the part of the families.  The importance of this witness was acknowledged recently by Rosslyn Noonan (Chief Human Rights Commissioner) at a disability colloquium in Dunedin.  She said that this was a good example of empirical research that was used to form case law. 

 Amazingly, on 8th January the judges came out in favour of the families. This is an astounding finding, because it challenges the arguments for “service capture” at many different levels.   It may be one small step to beginning to accept families as equal partners in work with brain injured adults. 

The story:

 “Anthony is 22 years old and had a severe diffuse axonal traumatic brain injury from a motorcycle accident in 2007. He is trapped within ‘a broken body’, cannot speak yet, but his mother recognises that he has all his thoughts, memories and personality.  This is what he wrote recently: “please help, I am trapped”.

When he was transferred to the long term residential care the house manager indicated that her staff was not trained to communicate with patients by writing (Anthony’s only effective mode of communication, though he can indicate yes and no).  The policy of refusing to communicate in this way seems to be corroborated by a report that indicates that Anthony cannot reason or process thoughts.  Yet his written messages make sense and it seems highly likely that he is wants to communicate something of his dislike for the place that he is in. 

There is  a deliberate and sustained policy of excluding his mother from meetings, although she attends him daily.  His therapists are in favour of any mode of communication that will foster his growth, but their voice is also being ignored.  Anthony is understandably furious and depressed that no one asks him whether he wants to write. 

 Angela, his mother is very concerned that Anthony’s “guardians” are not acting in his best interest and that they are financially motivated (they receive around $x/day for Anthony – you can fill in the amount here, the family feel they could do a better job for the dollars being paid).  She has been to a liaison officer who advises her that she needs some credible authorities behind her to speak to the fact that such treatment of Anthony is contra-indicated.  Through all of this she is sustaining a daily connection with her son as well as working full time.”

William Fairbank: art and brain injury

I am sitting in my office waiting to hear a radio NZ  inteview with William Fairbank.  I met William six years ago, during a visit to NZ shortly after he made the film “Head On” about brain injury. He had his brain injury about 23 years ago and he is a great advocate for occupational therapy.  In the early years after his injury he made a series of sculptures on the stations of the cross, which are on permanent exhibition in Lincoln cathedral, England.  He calls this his occupational therapy and he is in the business of using his art to educate medical professionals and the rest of the world about what it is like to live with a brain injury. 

His latest project is to make another film about the experience of brain states after brain injury.  Historical knowledge about brain injury has in the main been produced and known by people without brain injury.  William’s work is part of a movement where brain injured people produce their own ways of knowing in order to negotiate the kind of knowledge that is held about them.  This project is about gathering together the experiences of talented people with brain injury and putting them on film. 

In the disability movement the brain states after brain injury are one of the myriad expressions of  ‘Ouch! moments’.  These are the moments when a disabled person feels out of place and is made aware of the discordance between their experience and the rest of the world.  For the brain injured it is those moments when you put your car keys in the freezer; when the shop assistant gives you very strange looks; when you have told your best friend you don’t want to see them because you are too tired from thinking about making a simple choice; worse, it is the explosion of frustration when you have gone too far past your afternoon nap.  “Ouch! moments” are an exploration of the awkwardness brought about by having a brain that is out of synch with the rest of the world.  It is about having senses that are somehow not in tune with the common sense of everyone else.  It is about living in a different rhythm.  For William Fairbank it is about ‘living in the present’.  He describes the sense of being on a stage, or having things arrive to his attention and losing all else for that time. 

This living in the present sounds very pleasant, and William has learned ways of making it so -though the reality is not always easy.  He has learned to invite you into his presence/present as though you are coming into his living room.  It is all comfortable and full of lovely small things that delight.  He comes to visit in his “Little Puffer” caravan and brings his whole world with him: there are pictures on the wall and books on the bookshelves; repair kits and a sound system.  You only realise how caught he is in the present when you want to change the subject and find that William is still caught in this moment, which is also a self absorbed one.  This is one of the “Ouch! moments”, but William succeeds in sharing this brain state and making it fascinating, so that there is no wish to escape.  Maybe what he manifests is the same self absorption that is supposed to be so pathological in brain injury, but it is the Ouch!, without the ‘Oh dear!’. 

Brain injury can be profoundly alienating.  It can lead to experiences that are at the boundaries and the edges of what it is to be human.  Yet people like William have learned to map out the secret adventures of living with this brain state so that it reflects the secrets and aspirations of everyone; it reflects both pain and the search for a way of living that can mould an identity that feels worth living with.  It is not easy to understand, but it is our humanity and all the potential within it that makes us beautiful.  William’s work helps us to celebrate those heartbreaking strengths and those glorious disabilities that we all have.

It will be interesting to see what happens following William’s invitation to artists with brain injury to participate in the film he is making.  He hopes to include those who can craft their quirkiness into words, phrases and jokes.  There are so many ways of expressing the experience of brain states after brain injury: through photos, poems, paintings, jokes, quirky phrases.  If you are someone who has learned to do this….or if you know of someone who has the capacity to share a sense of reality that is mediated by a brain injury (and you live in NZ), don’t hesitate to get in touch.  I will use this blog to keep you posted on William’s progress.