The Day Program at the Rusk Institute for Rehabilitation operates out of a group of offices on the third floor of one of the New York University buildings on 1st Avenue. They share the premises with the Institute's department of Vestibular Rehabilitation. The floor plan is a circuit, around which the small and largely windowless offices are arranged. It's that classical office-building problem wherein internal partitioning means blotting out the sun and leaving inhabitants with nothing but the steady glow of tungsten.
In these rooms, the Trainees attend sessions four days per week. The morning is comprised of a group Orientation and another session in which one of them takes the Hot Seat for an exercise with the staff and is then given feedback by each of the other Trainees and whoever else is attending that day (family members, support workers, visiting professionals like myself, former Trainees or 'Peer Counselors' who have come in to help). These two morning sessions run from 10am until midday and take place in the group room in the middle. Lunch lasts an hour, then sessions resume with individual Cognitive classes, in which the Trainees work on their individual goals with a staff member. At the time of my visit there are eight Trainees, seven paid staff, an 'Extern' from the Netherlands and two student volunteers who visit once or twice a week. During the group sessions, with all these third parties sitting in, the Trainees are outnumbered almost two-to-one. My immediate impression is that the sessions are incredibly controlled. There are strict rules of conduct. One staff member chairs each session. If a person (including a staff member) wants to talk, they raise their hand and don't speak until the chair invites them. People dress in business attire (Ellen Zide, the Assistant Director explains to me that my jeans aren't really acceptable, and could I wear shirtsleeves tomorrow? I don't need a tie). I get the sense also that Trainees are not expected to dissent from the recommendations of the staff. On the few occasions where a Trainee expresses doubts about a strategy or some element of the process, the Chair says something akin to 'I hear you...' and then reiterates the rationale for the recommendation in question. The sessions, as far as I can tell, focus almost exclusively on two things: raising the awareness of the Trainees towards their impairments and emphasising the importance of their willing engagement in the program and its attendant theories and activities. In no prior visit (nor in any other situation) have I encountered such persistent and thorough discussion of cognitive impairment, or such ardent insistence on compliance. Over the four days I am present, I hear almost nothing else. Reading the goal posters around the wall I can see that all of them focus directly on one or other of these things: addressing an impairment or improving the Trainee's uptake of staff advice. In many of the rooms an image is repeated, a diagram in pyramid form, on large foam boards and on smaller A4 sheets. This pyramid seems to encapsulate the program quite well.
Trainees must begin at the bottom of this mountain, climbing its slopes as they overcome the various cognitive hurdles to their successful acceptance of and adaptation to their injury and, finally, arrive at some new understanding of their identity. To me it appears an arduous prospect. To me the sessions seem taxing and somewhat depressing. It is certainly not what I'm used to. But no doubt this is all for a reason. There is consensus among the staff and Trainees that this is the method, tried and true. And surely the Program would not have the reputation it does without some justification. There is no doubt that the work being done here meets a high standard of refinement - it is extrememly thorough and appears very sophisticated. Exactly how long the process of climbing the pyramid should take varies, I gather, from one individual to the next. The program is structured in twenty-week cycles, two per year. Some people do two cycles, some to many more. Each cycle a new goal will be set for each Trainee, intended to encapsulates whatever is most pertinent for their rehabilitation. The Trainees occasionally talk about where they are on the pyramid, and the staff allude to their progress 'since last cycle'.
This practice, perhaps unsurprisingly, comes with its own special vocabulary, a number of terms used frequently here that I have not heard elsewhere: 'neurofatigue' (I am unclear what distinguishes this from normal fatigue, apart from severity and frequency, which I understand can often be more pronounced after brain injury); 'discontinuity' (used here to refer to occasions where a person with brain injury experiences gaps in concentration or memory); 'flooding' (the experience of a person with brain injury when they are overwhelmed by emotions or other internal events, stopping them from functioning successfully, typically occurring at times of stress); 'verification' (a strategy emphasised by the program, aimed at helping trainees to maintain focus and check their understanding in conversations, compensating for problems of attention and comprehension); 'stemming' (a means of self-cuing involving the use of sentence 'stems' - beginning fragments that repeat the content of the conversation and lead up to the Trainee's response). I also encounter a number of familiar words that appear to be used here in ways I am not used to. Foremost among these is 'disinhibition'. In my experience at Headway, I have come to understand (and use) this term with reference to a quite profound impairment of self-control, a situation usually arising from injury to the frontal parts of the brain (quite common in trauma) that are responsible (among other things) for directly inhibiting the action of the limbic system, the so-called 'reptile brain' that mediates most of our more powerful urges (anger, sex, fear). When we talk about disinhibition at Headway, it is usually associated with our members who, for example, have threatened or actually attacked people at the centre, who have a groped visitors, who have a history of spontaneously disclosing details of their sex lives to strangers. At Rusk I witness well-dressed Trainees sitting quietly, taking notes, organising their folders, asking relevant, structured, carefully articulated questions about highly abstracted topics (e.g. the nature of self awareness), and apparently maintaining their concentration for up to two hours at a time in a dry, air conditioned room under artificial lights, surrounded only by the grey walls and hand-lettered posters describing their problems. The idea that someone who can do these things could be described as having problems with self control, that this forms part of the pathology complex the program aims to treat for these people is, to me, surprising and slightly baffling. It seems like an over-extension of the clinical terminology. It might be that I am missing something - that these people do, at other times exhibit symptoms of disinhibition that I'm not seeing. During one conversation this is actually mentioned by Pazit, one of the staff. She explains that the disinhibited behaviours generally don't show at the program because it is a safe environment where the Trainees are continually cued, a context in which appropriate behaviour is tacitly but pervasively scaffolded by the setting and the staff. This is believable in principle. It's certainly something we rely on at Headway - the idea that the context helps someone orient themselves to codes of behaviour. But in my experience, disinhibition tends to come in tandem with other functional signifiers - things which, although not always immediately evident, generally become clear after a little conversation. People for whom disinhibition is a serious problem generally say what is on their mind, they generally make social faux pas, they generally don't notice if they've said or done something to offend or confuse another person, they often repeat themselves both verbally and physically, getting stuck in action loops or returning to the same situation or activity when it's no longer relevant or helpful to do so, their personalities are typically said to have changed in ways noticeable to their loved ones. In the four days at Rusk I see very few of these things, very few things that even hint at the problem of disinhibition. Certainly there are times when Trainees lose the thread of the dialogue during groups, or the train of their own thoughts. But not to a degree that I would be able to separate them from the uninjured population (we all, after all, make mistakes).
Perhaps something else is going on. Perhaps the disparity I am seeing is just a question of standards. Perhaps what I am seeing is a program aimed at people who, before injury, were super high-achievers, for whom 'disinhibition' is a relative term, referring to what most people would consider a normal (or minor) degree of impulsivity but which, to them, represents a radical departure from their pre-morbid behaviour. I can imagine that, to a person of great skill and discipline, even a minor behavioural impairment might be catastrophic. (One of the Trainees, C, is said to have previously worked as a lecturer, earning his living by being articulate and quick-witted. He now has some word finding problems and, although he is evidently still a very capable person, he is nevertheless clearly distraught about his future career prospects.) Either way, to me the Trainees appear to be some of the most motivated, self-disciplined people I have ever met. And this gives rise to a key observation about the Day Program, something confirmed by both Trainees and staff: they screen very carefully at the point of intake and reject anyone they don't believe will be able to cope with the process. I don't know how many referrals they get, or how many people they turn down, but it's clear that the client group they are working with represents a tiny minority of the population with brain injury.
During the four days I also gradually gain an insight into the kinds of injury the Trainees have sustained. Of the eight people on the program, I learn about seven injuries: two have had traumatic (impact) injuries, but were conscious at the time of their accidents (were neither knocked out nor rendered comatose); two have had brain tumours surgically removed (and have injuries predominantly induced by this surgery); one sustained vascular injury (from a ruptured aneurysm); one was involved in a car accident, was comatose for two weeks and had a partial left temporal lobectomy; and one was injured in utero, before birth. Of the two Peer Counselors I meet, one was in a motorcycle accident and was comatose for seven days and the other was hit in the head with a school bag and, like the first two trainees, was never unconscious. At Headway, over sixty per cent of our stable membership have sustained traumatic brain injuries (TBI), mostly from road traffic accident and assault, and all but a few of them were comatose for a minimum of 24 hours (many for weeks or months on end). At Rusk, the number with TBI is fifty per cent and of those more than half were never unconscious.
Unconsciousness is not an infallible measure of severity of injury. There are plenty of people who live with some difficult symptoms after only sustaining concussion, for example. But at present the standard measures of brain injury severity are based on depth and length of unconsciousness and on the length and density of something called Post Traumatic Amnesia (PTA) - the period of time during which people form no memories after injury (the gap, that is, in someone's memory after their accident). If someone has sustained brain injury without experiencing either coma or PTA, there is no way of assessing or even describing the severity of the actual injury - all that can be discussed is the severity of the person's subjective symptoms, and the only source of information you have on that is the person themselves. (Neuropsychological tests may give some indication of a person's areas of difficulty but, for the same reason, are vulnerable to inaccuracy: a person's performance is not necessarily or directly related to their injury).
The other half of the Rusk Trainees have sustained vascular or surgical injuries. I don't mean to suggest that these injuries have inevitably less severe effects than traumatic ones, but they do tend to be more isolated in terms of cortical area and tend to lead, correspondingly, to more isolated impairments. Where trauma tends to affect diffuse and multiple functional areas of the brain, vascular and surgical injuries tend to be more circumscribed. There are plenty of people who have very profound difficulties after vascular or surgical injury, but their difficulties tend to be in one or other domain (unless the injury is very large), rather than many. This is a simplification. But taken together, the kinds of injuries sustained by the Trainees at Rusk present a certain sort of picture: of a group of people who, typically, have had less severe, more circumscribed injuries and, in some cases, injuries that are so mild that their severity cannot be reliably empirically assessed with existing technology (nor would they be likely to show up on any scans).
In addition, the academic nature of the program, and its emphasis on awareness of impairments and compliance with staff are reliant on several factors that would exclude further scores of the brain injury population I am familiar with in London:
1) It requires a minimum level of formal, Western, education (literacy, numeracy, study skills)
2) It requires comfort with and willingness to participate in didactic, classroom-type lessons (to be taught, to submit to restrictions around clothing and behaviour, to hand over responsibility and decision-making to an authority figure)
3) It presupposes that the impairments being addressed are predominantly hidden from the view of the individual, rather than plainly obvious (that the key barrier to compensation is inevitably awareness)
The Program may well be extremely effective for those who suit it. It may work, so to speak, for those it works for. But these people are, by dint of the Program's design, very small in number.
On my second day at Rusk I learn another vital piece of information. I am walking with Roberta, a former Trainee and Peer Counselor on the program. She has told me about her experience of injury, the effects of her loss of employment, the difficulty she had in adjusting. Somewhere along the way she mentions the cost of the program. 'Unless it's gone up, then its in the region of $59,000 for a twenty week cycle.' Most people do more than one cycle. One Trainee I have spoken to is on his sixth. I find this news almost impossible to grasp. The fee equates to roughly £36,ooo per place per semester. I can't imagine why it should cost this much. Roberta attended two cycles across one year and paid well over a hundred thousand dollars. Some of this was covered by insurance. A large part of it came out of her life savings. On our walk we bump into Yuki, one of the current trainees. He has come from Japan to take part in the program. He explains that, in order to afford it, he is taking part in fund raising events including running marathons. He has a website.
Roberta explains how hard the program is. She says she had great difficulty in the early stages submitting to the process. She found it hard being told she needed to learn compensatory strategies. She wanted them to fix the problem, not teach her about it. She said she found the program's focus on impairments almost unbearably depressing, especially given her existing desperation. I ask her what made her come around?
'I think once I became more integrated with the other Trainees, when I started realising some of them had worse problems than I did, when I started seeing that I was making some progress...' So a lot of it was about regaining confidence? 'Yes. And seeing that other people were in the same situation.' I ask her if she would spend the money again. She says 'I think so. It didn't give me back my life, but it did give me back myself.' However unpleasant the process, Roberta is convinced of its effectiveness. She seems to accept the cost as a symptom of the wider malaise that defines the American health care system. If you want treatment, you have to pay for it. And no other options exist. But for me, the cost of the program raises a virtually insurmountable criticism: it is available only to those with either supreme health insurance policies or vast amounts of money (which amount in most cases to the same thing). To some degree this explains the demographic they are dealing with at Rusk and the absence of what I consider the core client group: men from lower income families, from lower educational backgrounds, with tendencies towards risk-taking behaviours (driving fast, drugs and alcohol, violence, labouring and other physically dangerous areas of work).
On the last of my four days, I am invited to take the Hot Seat in the group room so that staff and Trainees might have their chance to ask me about my own program and what I have learned at Rusk. I say I have been impressed by the people I have met. I say I have developed an admiration for both the staff and the Trainees. I say I would be proud to work with any one of them. Yehuda, the program Director, interjects. He says 'For a salary of zero dollars, you would be welcome to come and work with us.' I laugh, and then correct him. 'I would be proud to work with the people I have met here, but I wouldn't want to leave my place of work. I like it there.' As far as what I have learned goes, it is difficult to identify what I could take with me. Perhaps a few of the strategies, like verification and stemming? The group ask me questions about Headway. I try to explain how different it all is. I say that the differences start with our intake policies. I say we don't take people under eighteen, or people with progressive conditions, but otherwise we don't really turn anyone away. We have no functional criteria. I try to explain the roles of the volunteers. I talk about the diverse range of services we offer, the way we work with our members so that they can gradually take on responsibility for running parts of the project. The group seem baffled. Yehuda intervenes a number of times, trying to clarify. I don't know how successful I am. I feel like I'm trying to describe air to a group of fish.
The truth is this: however well the program here works for those who can afford it, for those that can cope with it, I fear that it will always operate in a niche. And if we at Headway are to succeed in our mission to help people with brain injury, those tens of thousands of people across London, most of whom would simply never get near a program like Rusk, we cannot afford to follow the kinds of practices (both cultural and financial) they have pursued here. To respond successfully to the problems wrought by of brain injury, we have to provide a project that appeals to the diverse population that get injured. Where Rusk have chosen exclusivity and specialism as the guiding principles of their service, we must instead continue to choose inclusiveness and diversity.
After my visit I email Ellen to say thank you. In her reply she says that what Headway are trying to do sounds daunting. I suppose it is. But maybe not as daunting as she thinks. So much of what Rusk are doing is based on the idea that the staff must treat the Trainees, must take responsibility for their progress, must provide all the answers. While at Headway East London, we have always started from other direction, assuming that our members have the answers themselves. That, as a group, they contain the greatest resource of expertise on brain injury available (I did a calculation a little while ago. I worked out that, between them, our members have over 800 years of experience living with their injuries). The staff at HEL take it as their duty to work together with the members, to help them turn their answers into solutions, into new situations and relationships and occupations that benefit themselves and the community at large. We don't postpone participation until after some hypothetical end of treatment, we take participation as the starting point. We don't set identity and self-acceptance as the final reward at the top of the mountain, we start with it from day one. Our pyramid is the other way up. I have offered an open invitation to Ellen and everyone else at Rusk to visit us. I would genuinely love to have them. I can't imagine what they would make of us.
No comments:
Post a Comment