FUNDING FOR CARERS AND PEOPLE WITH SEVERE BRAIN INJURY: THE EXPERIENCE OF ACC

To quote from this work please reference as follows:

Butler, M. (2007) “Care ethics and brain injury”, Doctoral thesis, Otago University. http://www.severe-brain-injury.com/funding-for-carers-and-people-with-severe-brain-injury.htm

Introduction

The subjects covered in this section include: a) entitlement; b) an adversarial approach; c) resource allocation. The intention in this chapter is to give an overview of the actual context within which the carers in this research were practising. Without understanding the context it is impossible to understand what the carers have achieved in establishing a practice of caring for adults with brain injury. There are some elements of the context that are supportive of the practice of care and others which are not so supportive. This is no different to the context of any other kind of practice, but in this case the context is strongly connected to ACC. Obviously, as was noted in the literature review, ACC is not the only context for this practice of caring for adults with brain injury. However, it is a very significant element of that context and since it is unique to New Zealand there are good reasons to describe it in some detail.

The perspective in this research is one of carers. This research discusses carers in a way that respects their knowledge and skills. There are many individuals working for ACC and as health professionals who would concur with that perspective. However, in terms of the hierarchy of those who work in the field of brain injury, the work of these families comes very close to the bottom. Their relationships with ACC and other professionals are predicated on that fact. This is the real life context for everything that they manage to achieve.

The relationship with ACC generally starts out as one of adversary, which becomes tempered with civility if, and only if, the family gets adequate compensation for the one they love. As long as the family struggles with the level of compensation they continue to hold ACC responsible for their grief. On the other hand, the relationship with professionals starts out as one of allies, which gradually becomes tempered by the reality of their role as gatekeepers for ACC.

Some elements in this chapter may seem contentious. ACC is a large organization, with over 2000 employees. Individual offices have distinctly different cultures, depending on the people who are employed and the practices that have developed there over time. Obviously, as ethnography, what is said here about ACC is about families’ experiences with a particular local office, at a particular point in time. It is also presented here largely on the basis of evidence generated from families who deal with ACC, and without the benefit of similarly detailed evidence from the ACC side of the relationship.

Entitlement

One of the carers said to me “If the person with the head injury is adequately compensated, then the family is able to cope. Otherwise they cannot” (FN 26). I agreed with this and I wanted to work with people who had long established secure funding, in the hope that this would lead me to stories of best practice. The aim of this study was not to follow the battles of families fighting to get what they are entitled to. I assumed that people would be getting what they were entitled to, because these were the people with the severe brain injury. However, I found that things were not as simple as I had hoped. In this section, I examine the issue of entitlements from the perspective of the families. In particular I examine stories of two families who were showing severe signs of stress, which seemed to be related to lack of funding.

The relationship with ACC is a lifelong one for those who have severe brain injury. People with severe brain injury should not have to deal with the gradual erosion of services as their insurance cover runs out. Joanna was one of the most experienced carers in this research. She understood that where people had traded their right to sue, they had a right to expect compensation for serious injury from ACC. She described this understanding with great clarity when reporting a conversation that she had with a third party at a brain injury conference. “I was very restrained”, she said to me, with fury in her voice and continued:

Keith said to me that George was lucky. I said, ‘Lucky to have a head injury? I think not’. ‘No’, said Eldon, ‘lucky to have ACC’. But ACC is not luck. We have ACC because they took away our right to sue. This is not luck (FN 33).

Unfortunately, the political climate and the constant change in the legislation affecting ACC can lead adults with brain injury and their families to wonder if the compensation will be discontinued at some stage. The sense that they might be abandoned by ACC is enough to make the most belligerent family weak at the knees. George said “when I am 40 they will have been paying compensation to me for 35 years. How long is that?”. Joanna was adamant about his entitlement. “But,” she said, “that this is the kind of thing that he should not have to be worrying about at his age” (FN 132).

Other carers were not always so firm or clear-sighted in their perspective on the relationship with ACC. They could begin to feel so bound by a sense of gratitude that it became difficult to ask for anything else, even what they were entitled to. Marie described the fact that ACC expected her to carry large overdrafts, because it never paid her on time. She said, “I have never been able to threaten before because I usually found things like that backfired on me so I felt like I owe them, it is kind of like this whole situation with Dad. I felt like I owed ACC because they were doing us a favour” (I 542).

The families of the two women with brain injury, Arlette and Hakui, were the ones who showed the greatest degree of stress in relation to their entitlement from ACC. They were both at the lower end of the scale in terms of hours of care received by respondents in this research. Arlette was getting twenty-eight hours per week, while Hakui was getting twenty hours. They were both married women, living in their own homes and neither was given help to do activities outside their home.

Arlette was one of the most high-profile brain injury cases that happened locally for many years. It therefore seems incredible that for five years after the accident Arlette’s parents were given no assistance. At this time there was a major court case that allowed family members to be paid as carers, and they received a large sum as back pay (which they immediately gave to Arlette). They were grateful to have any care hours, and they were not asking for more. This family was profoundly religious and self-reliant. Asking for help, or demanding it, fell outside their belief system. My impression from being with them over the course of a year was that much of their stress would have been alleviated if there was more paid outside help given to Arlette. It was not a subject that came up for discussion and I was very aware of not wanting to provoke the situation. Even so, I could not help asking whether they were going to approach ACC about more care hours when I learned that they were moving away from Arlette. Bill was unusually evasive on the subject and he said of ACC, “I wouldn’t like to say, or assume, they are a funny bunch” (FN 646).

I was aware that Arlette was showing a real need for outside activity, in terms of boredom and restlessness. Without funding she was simply fitted into the services that were generally available for health service clients. There was almost nothing for people with brain injury and one of the groups she attended was primarily for people with intellectual disability, which seemed quite inappropriate for Arlette. I was surprised that neither her parents, nor the therapists involved with her, seemed to question the justice of this particular part of her situation. There was a feeling that once care hours were assessed and allocated by ACC there was nothing that could be changed in the future.

I quickly learned from my visits to them that they were giving Arlette at least twice as much care as they were being paid for. However, without additional funding she had very little chance of finding a place in the wider community or engaging in productive work. She was perpetually safe within her own home, doing housework and taking anti depressants. The problems began to surface for Arlette when she came off the medication. She was also very absorbed by ongoing rehabilitation on her foot, which had been operated on thirty three times since the accident. There was a long recovery period associated with each operation, but these had finally ceased during the year of the research and for this reason again, Arlette’s need for outside activity was again exposed.

Bill’s health had steadily deteriorated from the time of Arlette’s accident. He had kidney failure, with multiple complications that could be put down to stress. In the year following the study he had both legs amputated. His relief at not having to constantly look after Arlette was palpable, yet he would never complain, and would only communicate in euphemisms like “it isn’t easy”, or “she’s been a bit naughty”. However, things began to come to a head during the year of the research.

There was one day when he really had enough. As usual Arlette was there for the interview, and they would never say anything hurtful in front of her. He followed me out to the gate to tell me about a seemingly small incident where Arlette had come over and made herself a plate of spaghetti as they were trying to clean out the cupboards in the kitchen: “She has no idea sometimes. How could we tell her that it was not appropriate at that moment? How could we make her feel like an imposition? How could we tell her that we need our own space? It just gets too much sometimes” (FN 639). In one incident after another I experienced the sense that these were people who had simply reached the end of their tether, and each new incident was like the extra straw threatening to break the camel’s back. Lillian coped by going on anti-depressants, but when she came off them she found herself facing the symptoms of burnout.

Hakui was also a housewife and her twenty hours paid care was intended to cover home help, childcare and some transport. There was no provision to help her make a productive contribution to society and this was a source of great frustration to her. The year before the research began she signed herself up for a private course in computer graphics, paying for it through her student loan. Ironically, ACC took this as evidence that she no longer needed so much care, and her hours were reduced from thirty to twenty hours per week.

Harry hardly had time for reflection, but he noticed that life got much harder for him at this time. Nobody ever asked him how he was; there was never a single assessment over the years that asked his opinion about the care required for his wife. Every assessment was done with Hakui alone, doing her best to advocate for herself. This was not a useful strategy given the complexity of the issues surrounding Hakui. One day Harry told me about how he had recently been included in a customer satisfaction survey for ACC. Hakui said afterwards how the survey angered him, because it made him realize the fact that there was not help for him as Hakui’s husband: “That survey made me think, as I said to the woman, if I could spend as much time talking to my case manager as I was talking to you then I might get somewhere”.

An adversarial approach

In this section the adversarial approach of ACC to the participants in this study is discussed. However, it is not only direct employees of ACC who are confrontational in this way. As far as the participants in this study are concerned, the specialists and therapists contracted to ACC are representative of ACC. Therefore difficulties that they have with professionals are connected directly with the kind of outcomes that can be expected from the process. There are degrees within the adversarial approach and sometimes the potential consequences were more serious for claimants than others. However, what is palpably clear in this section is that the capacity of families to fight back when they are faced with this kind of approach from ACC is much greater than the capacity of the adult with brain injury to deal with the same circumstances. The vulnerability of the adult with brain injury is particularly clear as they try to represent themselves to ACC, or professionals. Judging by the frequency with which the word battle is used in relation to ACC and professionals, it is clear that carers see that a significant part of their relationships with these groups is constituted by a sense of battle (FN 166, 192, 556; I 364, 506). For example, when Marie was asked about her relationship with ACC she said:

If it hasn’t just been hard enough trying to get dad some sort of life, and what is needed for his rehabilitation, and the recommendations that were made, it has been a constant struggle to financially survive, to emotionally survive it, because we have been that close at times to just walking away from it because it has just been such a battle, every single thing has been a battle. There has been absolutely no support, absolutely none (I 509).

There is a gap in brain injury services in relation to advocacy. The scope of Health and Disability advocacy relates to actual services or interactions with health or disability professionals, not eligibility or access to services. ACC does not provide services directly and so claimants are not entitled to use Health and Disability advocates when dealing with ACC. Instead they rely on the local support group for advocacy. In a voluntary group this can be a random process, but in fact all the families in this research had been helped with advice from a particularly skilled voluntary advocate in the local support group. She took on a specific advocate role in three of the five families and all regarded her with gratitude and respect. She was considered to be a formidable opponent of ACC and she had done much to educate the families about the political aspect of the care that they received. The families depended on this advocate in the early years post-injury, but tended to withdraw as the relationship with ACC became less adversarial.

In Marie’s case she was able to use the Health and Disability Advocacy services once she was dealing with an agency, rather than directly with ACC, since they were only allowed to help in issues that were not directly related to ACC. The advocate was very skilled in terms of helping Marie to see that she could have some power in the situation. She also gave her some practical strategies, such as encouraging her to make the introductions so that she could get her side of the story across. After this experience Marie said that she felt that she had more rights when working with the agency than when she was dealing directly with ACC (FN 488). When she was dealing with ACC Marie learned to use a lawyer:

I am going for a follow-up meeting to ACC, to get them to fund supervision time. I will be taking my lawyer with me, and if they refuse I will be going straight to review. My experience has been that if you take anyone other than a lawyer that they don’t take any notice of you. It doesn’t have to be this hard (FN 488).

The adversarial relationship was usually between ACC and the claimant. However, in their role as gatekeeper of resources, health professionals could also become mildly adversarial. The most significant communication that occurred between professionals and families, at the stage when this study took place, was about the interpretation of deficits and what they mean in the life of the person with brain injury. It is in the families’ interest that these should be recognised so that there will be adequate compensation, since that is their one real chance at having some quality of life.

Two families in this study began to suspect that seemingly good relationships with professionals were not always working to the benefit of the person with brain injury and that the professional might say something that would take away their entitlement to compensation. Casual, out of context, conversations between an assessing therapist and person with brain injury became subject to intense scrutiny by the family. The nature of small town New Zealand meant that there was plenty of opportunity for a therapist to see the adult with brain injury doing things and then to report these out of context. Part of the advocacy role of the family was in learning to present evidence to the assessing therapist in ways that made the injury comprehensible. Joanna gave an example where she told the therapist about a trip that George took by train to the nearest city. Without further exploration, the therapist’s next report included the comment that ‘George can independently use public transport’. This was a mistake that the family did their best to address after the event:

I wrote a letter to the therapist saying that this journey was carefully facilitated. He was brought to the station and then he had repeatedly phoned different members of the family for reassurance during the journey. We got him to the station, he rang twice, including two to Kieran, then again twice … and others to his dad. Forgetting what he had done. (FN 101).

This family was alert to the fact that every such example needed to be challenged with the truth or the entitlement of the person with brain injury was likely to be threatened. A less experienced family might store it away as yet another misunderstanding, but fairly trivial. This happened to Hakui when a therapist saw her shopping in the supermarket, and wrote in the next report that she was “independent in shopping” (FN 311). Hakui was capable of going around the shop and putting things into the trolley, but she was not able to budget and regularly overspent their restricted food budget. She also did things like forgetting her wallet and had to call Harry to rescue her. The word “independent” on this report therefore should have been challenged, but the family did not do so in spite of complaining bitterly to me about it.

Therapists did not generally take on an advocacy role. However, in Mike’s case his key worker was a physiotherapist who mediated between ACC and the group caring for Mike. In this case the case manager did not even come to case meetings, but depended on the therapist to relay findings back to her. During a case meeting when the suggestion was raised that Mike might live by himself, the therapist questioned whether ACC would support the idea (FN 565). In this case the therapist seemed to have to take the side of ACC against the direct wishes of the person with brain injury, so it is doubtful whether this position could be called advocacy.

Sometimes therapists clearly tried to recommend services, which ACC then blocked. Marie was managing a twenty-four hour care package for John and there was never any doubt about his entitlement to this because of the enormity of his level of injury. However, in spite of having a relatively generous package Marie felt that relations with ACC were constantly soured by the struggles that she had with them over fairly minor issues that could have made her life much easier. This became particularly evident during the year of this research when she asked for a copy of John’s files, as she was entitled to, for the first time. She went over the notes with Matthew, her husband, and some of the information was quite devastating for them to read. What she read in these notes was about recommendations from professionals for help with supervision and education that she had been requesting for years. There seemed to be no good reason why these recommendations had not been followed up.

Matthew and I spend thirteen hours going through these files … one of the things that has happened is that if I could have seen ‘x’, or ‘y’ (case managers with some degree of authority in ACC), one day I would have ... jumped on them. I am so angry. I do not think that ACC is evil, but they do make things as difficult as they can (FN 479). It seems to me that when I started this that there was a much kinder system in place. Now they try to trick you at every corner and they are doing it deliberately. What ACC have done to me and my family over the years is to take every scrap of self respect, and just left me at the level where I was barely coping (FN 482).

Hakui’s case was one where a series of small injuries had produced the cumulative effect of a much more severe brain injury. It was obvious that Hakui’s case puzzled the health professionals and that ACC were very interested in reducing her entitlement. This placed Hakui in an adversarial relationship both with ACC and almost every health professional with whom she came into contact:

After I left the assessment unit a therapist came to visit me at home. This woman sat opposite me and said that I was pretending to be brain injured and could I just give up the pretence. I had already had an injury, I had enough insight into myself to know that this new injury had seriously affected me, and I was furious. ‘Get out of my house’, I said, ‘get out now!’ The woman refused to go and repeatedly said that if I kicked her out now that I would never get any help from ACC (FN 320).

She learned over time that it was counter-productive to get angry with professionals, but she still tended to get extremely distressed as she tried to communicate with them. There was a huge amount at stake for her, because her entitlement was being steadily eroded over the years. The following is a description of an interview with a neurologist that I accompanied her to.

The interview goes on for nearly an hour, and by half way through I am feeling an escalation of Hakui’s discomfort. I am really struggling to hold track of the conversation and I assume that this is what she is feeling too, since she spins off on some tangents. Harry goes off and gets some water and she calms down for a while. However, I have a very clear feeling that she is going to ‘lose it’, since she has come to some kind of a pitch. Finally he asks her permission to do the physical testing. There is a feeling of dread from Hakui here. She has done all of this so often, and within the normal range. He is looking for asymmetry. She assures him that she bumps into people on her right when she walks down the street. I see her flinch at sounds of phones in the corridor, but he overlooks this. It is only when he shines the light in her right eye that she hits the wall. She flinches repeatedly against the light. He indicates that the examination is over and suggests that she ‘hop down’, but she curls up on his couch, to his discomfiture. Harry gets Hakui out of the office saying, ‘you won’t get anything sensible out of her, but she will respond to commands and to guiding’. She does so, but collapses in a heap in the corridor. When she comes around she says that the last thing she remembers is the beginning of the physical assessment and no more. I leave Hakui with Harry and return to get her prescription from the neurologist. I am bemused by the lack of sympathy from him and there is no concern expressed about her state of mind (FN 343).

It was clear to everyone, including Hakui, that her seizure events were triggered by stress. She used to call it “carking it”. In this case she was panicked by the experience of being assessed, especially since she did not think that the neurologist was picking up the nuances of her disability. Unfortunately her response set up a negative response in the otherwise sympathetic neurologist, and so things continued on a downward spiral for Hakui. She had a similar experience when she went to visit an audiologist during the study year. She asked me to accompany her and this is an excerpt from about half way through the interview.

Hakui knows that there is a miscommunication happening, she is getting more and more eloquent, more heated, and finally she explodes at him, ‘you are hurting my ears now, with the way that you are talking so loudly’. They both scale it back at that point. It continues in this vein for a while and then he wants to do a few tests. I have a bad feeling and sure enough within about five minutes Hakui bursts out of the small testing space in tears, badly shaken by the pain of what she has been exposed to. His bedside manner does not extend to comforting her in any coherent way. He has done what he was paid to do: ‘it is outside my area, all I can do is suggest that ACC refer you elsewhere, possibly to Auckland’ (FN 338).

Neither of these specialists knew what to make of Hakui, but I must also add that neither of them made any effort beyond the immediate interview to piece together her case. This fragmented approach meant that she was made vulnerable to every assessment that might announce a reduction in her care hours, and hence in her family’s capacity to cope.

Resource allocation

In the following chapter I describe in depth how carers used the resources available to facilitate individualized care for the adults with brain injury. In this section, however, I first discuss the relationship between health professionals and the concept of individualized care. I then give an overview of three different types of funding the care package, which allow more or less individualization of the care: family management and fundholding; and management by a care agency; or management by a care agency in partnership with the family.

The attitude of health professionals

The carers in this research were very capable and they were not waiting around for professionals to come up with solutions. However, this had not always been the case and in the early stages after the injury families still had the hope that professionals would help them. The disappointment when this did not happen was very live in some cases. Joanna expressed a sense of outrage that nobody (meaning no professional) ever really tried to help them, or “stuck their necks out for them” (FN 70).

She made the point that most people were only assessed for services that were already available. This means that not only did they fail to get what they needed at the time, but also there was no ongoing record being made of services that were needed which did not already exist. For instance in Hakui’s case, when she asked for help in finding activities that fitted with her sense of Maori identity the response was a terse “there isn’t anything like that available” (FN 390). In Arlette’s case her parents talks about the occasional offers of help that they had been given, but nothing ever came of these offers. During the study year Arlette finally had some intervention from a therapist, but only in order to fit her with available services, which was exactly the point made by Joanna.

Carers, especially when they had control of the care package, were very capable of creating an individualized approach for the adult with brain injury. In Marie’s case, she realized that a very occasional sleeping pill would be helpful with John. In the relationship with medical professionals, such as doctors or specialists, there seemed to be very little acknowledgement that the carer might have valuable insights into the person with brain injury. Therefore the response to Marie’s simple request was a referral to ACC, which refused access to sleeping pills and offered a complete assessment at the rehabilitation centre. The result was months of delay before Marie finally got access to what she had originally asked for. In the end it took a letter from the consultant at the assessment unit to clear it up (FN 463). The experience was an infuriating one for her and she found it insulting that the ACC staff did not recognize the amount of expertise that she had built up with her father.

All I wanted was a sleeping tablet! At the moment we would use it about once every month or two. But they wouldn’t give us this. They don’t look at us for years and then we ask for a sleeping tablet, which they won’t give to us but they want to give us everything else. And they offer us this respite package, and assessment worth ten thousand dollars. I want to take him in there and leave him for a couple of days and then they will see how hard it is (FN 439). Ten thousand dollars worth of assessment to get sleeping tablets. I mean, what is that? In a rest home a care giver can give sleeping tablets. We had eight years’ experience with dad I mean, that’s just bizarre. What a waste of funds, we could use that ten thousand dollars for a bathroom. Come on, get practical, get real, it is very basic stuff to me; it is very basic. (I 511).

Hospital staff also had terrible difficulty in looking after John when he was in hospital following his brain injury. His behaviour was tragically difficult when he was still in the hospital and in the end he was locked in a room, with his own faeces. He was clearly very frightened, and this is what he was reacting to. This is the story Marie told, which explains in part why she was completely unwilling to allow her father to be cared for in a hospital or rest home.

In the end what they did was they put him in a room, which would be, say, 16 feet by 12. There was a bed, there was a chair, there was a hand basin. They took the door handle off and dad constantly walked the room. He would defecate and urinate wherever, which was something he didn’t do before he went in there. He would plaster faeces around, he got up on the windowsill and hence they had to put bars up so that he couldn’t open the window and step out two stories up. They said in there that he was very aggressive (FN 507).

In relation to John’s case there was a situation that arose during the year where the independence of therapists from ACC might clearly have been called into question. Marie asked me if I could find some therapists who might give an independent assessment of John’s needs. I did not believe that this small assistance took me outside of my research role and so undertook to make a few phone calls on her behalf. I got as far as making two phone calls to therapist, neither of whom were able to help. At this point Marie informed me that she had managed to find an independent therapist outside the local area. In both cases, these quotes are from therapists being cautious, rather than indicating what they knew for a fact. However, it does shed light on the perceived relationship between ACC and therapists.

Therapist A: “I will be doing work assessments next year, and I would rather not compromise myself with ACC”. T

herapist B: “I will be doing independent contracts with ACC next year, and the more I hear the more afraid I am about committing to this … I have just talked myself out of it” (FN 483).

There were other situations where health professionals did not know how to deal with the person with brain injury, never mind giving them individualized care. This frequently happened with Mike and Sheila told me this story about how he made suggestive comments to a young doctor when he was in hospital for a serious health problem shortly before this research began. The upshot of this story was that hospital staff refused to look after Mike because they could not cope with him. They said that care staff could nurse him at home. In telling this story Sheila was very aware of the potential consequences for Mike, whose general health was fragile.

There was a young lady doctor looking after an elderly chap straight across from Mike’s bed and she didn’t pull the curtains around and of course she was looking at the drainage from a wound on his leg, and Mike made the comment of are you giving him a ‘blow job’. She started laughing and of course then she complained to me, and of course I was brought in again. ‘Come back in’ and I said ‘what is the problem?’ and she said ‘well I didn’t appreciate what he said’, and I said ‘what did he say?’ and she just repeated what I just finished saying and I said ‘well what did you say to Mike’, ‘nothing’, and I said ‘why not? Mike has a head injury’ and I said ‘so if somebody spoke to you outside like that you would just do the same, you would laugh’, ‘certainly not’. I said ‘well why is he any different? You have to be straight, you have to be able to tell him exactly what he is saying wrong and how he is to treat people or he will just carry on’ (FN 586).

Family management of the care package

Joanna had managed George’s care package since he had started to get it three years before the research began. She believed that this was the best arrangement because it allowed her to arrange the care flexibly around George’s unpredictable needs. Therefore when he went to Auckland she was able to move the whole package of care over with him. She was also able to use some of the package to pay for him to work alongside a building contractor, even though his attendance was so erratic. She met with Marie at one stage, as Marie was contemplating switching back to agency care. At this point she re-considered what she was doing, but came to the conclusion that it was best for George that she continue to manage the package because of the flexibility that this gave her.

Joanna was self-consciously scrupulous in her dealings with ACC. The package of care was hard-won and they were determined that it would not be threatened in any way. They wanted to be seen as accountable in the interest of maintaining a constructive long-term relationship. In George’s case, he was assessed as needing twelve hours care a day. Joanna described the decision to reduce the number of hours. She said, “Later on we told ACC that they could cut it down to nine hours since we did not need the rest. The case manager did this, but the proviso was left in place that we could ask for twelve hours again if we felt that we needed it” (FN 36).

Joanna and Jack proved to themselves that it was possible for George to live away from them at this stage in his life. They were constantly trying to imagine the next step for him. Sometimes they talked about letting him move away permanently to somewhere like Christchurch. They knew that in this case they would have to hand over care to an agency and they would need the full twelve hours of care. However, this was just a fantasy and they had no confidence that anyone else could do the job in a way that would keep George safe in the long run. The following conversation gives an idea of how these ideas were constantly being fielded between George’s parents as they tried to see their way to helping him make the next step in his life. They were discussing here the possibility of turning over his care to an agency.

‘Of course he has never seen all that we do for him’, says Joanna. Jack agrees and says, ‘the agency would have to set him up and maybe let him fail, before he would accept any more help’. But Joanna disagrees and says, ‘a team would have to be set up that acknowledged all of what he needed, such as twenty hours of voluntary work, help with eating etc ...’ For a moment Joanna allowed herself a fantasy about what it would be like if they could just go and visit him the occasional weekend and then come back to their own life here and not have to worry about it. But then she came back to reality with a bump and remembered that it would always have to come back to them. ‘The trouble is that the agency would see what he needed, but then not put enough in place. It would all be okay for about three weeks and then it would all fall to pieces and it would be up to us to take the time to pick up the pieces. This is not done quickly’ (FN 214).

The problem with handing over to anyone else is basically one of trust. Joanna and Jack could not imagine handing George’s care over to anyone else, because they felt that things would fall to pieces and it would be left to them to pick them up. In any case George strongly resisted having care from anyone outside the family. He still came in to see them every day, to get food and to use the computer. Therefore they were able to use the care package to employ a handyman who could work alongside George and talk to him about ideas that he was chewing over.

The way we use Ben is that he comes and does a bit with George when he needs a hand. Often George will phone him several times a week for an hour at a time. This takes some of the pressure off me (FN 55). Ben and himself spend hours just nosing around places, looking at things. That is how he learns (FN 16). Last week himself and Ben spent the whole time working on his sleep-out (FN 16).

There are plenty of stories, which Joanna was aware of, where the family was under investigation by ACC for some misdemeanor in the way the package was used. Difficulties seemed to happen most commonly when the care package did not adequately cover such things as holiday and sick pay, or GST. Joanna realized during the research year that she needed to look at whether she had actually reached the threshold for paying GST: “It only happens on the years when I use the funding for respite care, which is certainly not every year. I just want to have everything ‘above board’” (FN 50).

What was interesting to me was the fact that even though Joanna was well informed about money matters; she had to think hard about matters like GST in relation to the care package. She had some training in accounting, she had acted as a treasurer in several voluntary organisations, and other people sought her advice. Marie also had a great deal of difficulty with the financial management of the care package when she was doing it herself. There is an argument to be made about the need for training for families who choose to hold the care package. The evidence of this study suggests that the way that families gain the necessary knowledge is haphazard, yet the responsibility associated with managing thousands of dollars on a regular basis is a big one.

After meeting with Marie, Joanna considered briefly the prospect of handing over the care package to an agency. However, the freedom that comes with managing the care package herself was something that she did not want to give up. During the study year they were able to divide the care package in three, giving a third each to supported employment, a handyman friend who could counsel him, and a third to cover additional activities that would benefit George. They did not use the package to pay themselves. George desperately wanted to return to Auckland and at this stage they were able to transfer the whole package over to friends who would look after him there. He would not have been able to have this kind of freedom if the package was managed by an agency.

For instance, he plans to board with the newly married kids of friends of the family, Sean ... who was very helpful last time, and could use a few bob right now. I will divert that whole care package there for the duration. My motto today is about doing what you want to do, but taking the head injury into account. He will do a bit more this time, but he is not going over to work (FN 25).

The other reason that Joanna decided to retain management of the care package was because, after careful consideration, she realized that George would never accept this kind of help from someone who was not a member of the family.

George is now more willing to talk things through with Steven, but he is never willing to accept real guidance from anyone outside family. This is the greatest drawback to the inadequate services that were given to him through his childhood. He never become socialised into accepting help. This ability to accept guidance is a very difficult balance to get right (FN 172).

The advantages here of family management of the care package are therefore found in the freedom to decide the best way to use the package, for the benefit to the person with brain injury. The family can have much greater control of the people who are employed and this improves lines of communication. The disadvantages in this case are that there are financial responsibilities that go along with the care package, which the family is not trained to undertake.

During most of the year of the study Marie was also managing the care package for her father. The package had originally been managed by an agency and towards the end of the year, for various reasons, she gave the package back to an agency to manage. She made the original decision to run the package herself because she realized she was doing all the work for the agency and that it might be easier to simply do it herself. It was also based on an awareness that John’s care needs went beyond simply paying for carers. Being driven in a car calmed him, but this meant that a car had to be available and petrol put into the tank. He also had very poor temperature control, which meant that the heat had to be constantly cranked up in the house. These things were expensive and Marie was looking for a way of covering them:

I was doing the rosters for the agency, I was working out the time sheets so basically what I was doing was sending in time sheets and they were paying what they were requested to pay and I thought I am doing all this. I get paid ten dollars an hour and all they have got to do is plug through the machines basically people’s wages, and I thought they are making over a thousand dollars out of this. This isn’t quite right. We would like to have had a car for Dad, heating costs for Dad, all these things I felt that I could help with by also taking on the package. Because of the GST, I could have claims for things, I could buy a car, use it for business, claim GST back on it. The same with running the car, to help finance Dad to be able to be driven around and the same with the heating and all that. So that was another reason why I took it on (I 551).

It was difficult to work out all the factors that were associated with the care package, so in the end she acted on the hunch that she would be better off. She was advised by an occupational therapist that ten dollars an hour would be a sufficient rate.

The occupational therapists actually brought it up to me to start with and they were pushing at me to take it: ‘as a rule say you would like ten dollars an hour’. Now I had to sit down and it was beyond me at the time because of everything that was happening. I did not have the brain space to sit down and work out the figures as intricate as you really need to work them out for that, because you have got to cover so many different things employing people (I 551).

Marie achieved a very high level of care for her father in the ensuing six years, while she managed the care package. She did most of the care, but she could not do all of it, so she had to learn the skills to be able to employ carers in her own home.

It is a really hard skill to learn to put your foot down in your own home. You expect people to come in and act almost like friends and of course they are not, they are not friends, they are here in a paid job and they haven’t had any particular training – so you are effectively providing all of that training and all of that setting standards (I 498). No, nothing prepares you for being able to deal with systems, different systems – just so many different carers. You have got to be able to detach yourself from them, to try to keep a professional environment around you, which is very hard to do in your home (I 497).

Most of Marie’s focus was on the practice of caring for her father. It took her a long time to begin to realise that it was not financially feasible for her to run the package at the rate of eleven dollars an hour (the rate was raised during this time), when she was paying her carers twelve dollars an hour. In order to achieve this she paid herself six dollars an hour and deferred her tax bill for several years. Marie felt that her mother and the rest of the family were expecting her to fail and she responded by putting on a front. She made things look as though she was managing the financial side of the care package with ease. She went to great lengths to hide her difficulties from her mother. As this passage indicates, she preferred to take on a fight with ACC rather than to let her mother know just how difficult she was finding things.

I took such a responsibility on and let her get away with it. I don’t mean that aggressively or anything. I find that I can’t, like now the deal is if Mum works, she gets paid when I get paid. But before it was kind of like she was saying when are we getting paid, oh yes you get paid on payday, because payday is Tuesday. You get paid on Tuesday; yes mum it’ll be there. ACC would be a day late paying me so it was like I would go into this huge stress mode – what am I going to do, what am I going to do? I would turn myself inside out; I would eventually ring the bank and ask for an overdraft on my overdraft, which was costing me hundreds. Twenty five dollars per hundred that you owe them per day thank you very much, we are talking hundreds of dollars and I just shut my mouth and I would do it because I didn’t want Mum to think I wasn’t capable, I wasn’t confident, that because I just knew that she would say oh I knew you shouldn’t do it and I just didn’t want to hear it because basically I probably shouldn’t have at that time but yeah, so I gave the illusion that it was a great thing, here Mum you have got a house keeper, that will keep Mum happy, it will stop her from growling that she can’t do this and can’t do that. I supplied all the petrol for Dad thinking, yes Mum that’s fine, everything’s great, and it wasn’t. It just wasn’t and it hasn’t been but I couldn’t talk to Mum about it. I couldn’t talk to anybody about it. So I hit ACC up again, I tried to hit them up for more money, please give me more money; all I want is the costs covered. It took me two years and they upped it to twelve dollars an hour and upped the nightly rate by fifteen dollars more. But you have got to realize I was carrying this for two years and while I am carrying it for two years of course I am getting myself into more debt you see (I 538).

Marie’s anger was largely directed at ACC, because they were consistently late with payments all the time that she managed the care package. At times she was paying one hundred dollars in overdraft fees, because she needed to pay the wages for her carers. She did not have the financial reserves to be able to manage a deficit and her exasperation with the system was a frequent topic.

They don’t give me enough money to be able to build up any money behind me to cover and carry at times like this when they are late paying me. The first time I brought it to their attention they told me to get an overdraft, the manager told me to get an overdraft, I did that, but when you are looking at two or three weeks, how long are you supposed to cover it for? So I rung up Simon (the case manager for ACC) and said this is not good enough, you must have a better way of paying me. ‘No, that’s how it is’, and I said ‘well I don’t think it’s worth it’. Anyway Simon got back to me and he asked me to give it another six months, he would make a point of making sure that I was paid basically within a week, so now I have to ring up when I send the invoice in and Simon looks after it because of course they have changed their payment process again. So it astounds me how – you get a telephone – what would the telephone company say if I rung up and said excuse me, I have changed my payment policy, I am not going to pay you next month. I mean the power, what would they say – I mean I can’t believe that a government department or a business can just change their payment system with absolute total disregard – without any regard. I mean I just don’t believe you can do that and yet … (I 543).

In spite of assurances from her case manager the difficulties with payment continued. Simon told her that new ACC regulations meant that they only had to pay within fourteen days of getting an invoice, not within five days as it had been in the past. During the year of doing the fieldwork for this research I never registered a single instance when she was actually paid on time. Because of this treatment Marie was left feeling that ACC did not support her decision to run the package and look after her father as a family member. She had this to say in an interview:

I find it very strange that the system says it wants to nurse people in their own homes, they want families to take care of them and yet everything that they do, every action that they take, is against it. Do you understand what I am saying? Every action, every single action and thing that you go through with them shows me that that is not really what they are saying at all. They might be spitting that out their mouth but their actions speak louder than words and by god their actions say that’s not what we want. Their actions say we want you to pass the attendant care to an agency, we want your father in care, this is what they are saying, this is what their actions have been telling me and there is nobody or no one that is going to convince me any different because I have been through it and that’s what their actions speak (I 520).

In a last-ditch attempt to continue to manage the care package Marie applied to be paid as a non-contracted provider (i.e. someone who also offered a service to other families), rather than as a family member. She waited many months for a response to this request and she was finally offered twelve dollars and forty-eight cents an hour, backdated for nine months. The letter again included encouragement to transfer the care to an agency. It went as follows:

The package which has been offered to you is designed to meet the costs in managing the package, including provision for staff meetings, travel costs for carers if you choose to pay these costs, sick pay, holiday pay, ACC levies etc. When you accepted the management of your father’s package, you effectively accepted to run it at the rates offered to you. As I have said, the only backdating we can offer you is an increase in the hourly rate to $12.48 from 1/3/04. I shall confirm this in a decision letter. If you are not able to manage the package with the remuneration offered, there is the option of transferring your father’s care back to an agency and you yourself could then be employed directly by the agency. I know that this is not an option you have indicated you wish to take, but I feel it is nonetheless my responsibility to remind you of it again (letter from ACC 483).

These events conspired to bring Marie to the point where she was prepared to accept agency management of the care package again.

Agency management of the care package

The fact that two families in this study used the same agency may indicate that the market had been cornered. However, neither family was particularly happy with the service that they were receiving at the time of the study. Their stories have some essential similarities, such as difficulty getting good staff, lack of expertise, lack of coordination, lack of real contact with the agency, poor matching between the person with brain injury and staff, and no commitment to training. However, the issues arising from each case are quite different and so they are dealt with separately here.

It was eventually a relief for Marie to work with an agency since this removed a lot of the problems she had been having with ACC about pay rates and timely payment. Unfortunately, it turned out that she simply exchanged one set of issues for another. It is necessary to give a little bit of the history of the management of this care package to appreciate what Marie eventually managed to achieve. She had taken on the package about six years prior to the study because she was sick of mismanagement by an agency. During the early days when John’s case was managed by an agency it was recognised that he had such a high level of need that a registered nurse was employed to coordinate the care. However, the family felt that the nurses were not doing their job and that they were dishonest. Marie looked very fierce as she was telling me this story.

I set up everything before I went back to Australia and when I came back the system had fallen apart. An agency was supposed to be managing it, there were two registered nurses being paid twenty-five dollars an hour. One of them was supposed to be in charge, but she was paying a carer ten dollars an hour during her shift and then pocketing the difference herself, and she was supposed to be supervising. And there was so much infighting; it was all about power (FN 462).

Many agencies, especially those covering a rural area, found it difficult to recruit carers. As far as Marie was concerned this led to a conflict of interest, where the paid carer’s rights were respected above the needs of the person with brain injury.

There was the carer who turned up drunk at eleven o’clock to say that she would not be working next day. We tried to stop her driving away because she was full (of drink). In fact the police picked her up. We gave her twenty-four hours’ notice that we did not want her to work on Monday. But then she handed in her notice and she got paid for that day anyway. This did not seem right. And the agency wanted us to take her back, because they want to protect their employees (FN 446).

Marie returned to her home in Australia, but then came back a few months later to find her mother very harassed, even though the two registered nurses were supposedly assisting. She realised that her father was not being cared for adequately; he was dehydrated, left lying in a wet bed, and was often very cold.

When I came back I would spend hours and hours reading up in the diary about him because I was concerned when I saw the fact that he had two drinks in sixteen hours, two drinks of coffee. He actually asked me for a glass of water, he actually said ‘water’, so I gave him water and I got very spun out when I saw this and thought ‘my god what has been going on?’… Dad was in bed; the house was freezing cold, up in Dad’s end where the bedroom was. He was lying with a sheet over him and he was wet with urine, while Debbie was cooking sausages and chips. I was so concerned about Dad that I actually rung the doctor to find out what would happen with somebody getting hot and cold, you know extremes, and he said that was not good, pneumonia so I thought this is not very good with Debbie. Also with the liquid intake wasn’t very good so I checked with the doctors about that as well to find out so that wasn’t good (I 548).

Marie desperately looked for people who would be kind in their care of her father. She offered the job to her brother and sister-in-law, who were unemployed, but they did the job half-heartedly. She found two family friends who did the job well for eighteen months, but they then moved on. Another carer was brought in, but she went on a two-week holiday without giving any notice. The care hours were offered to another sister, who never turned up.

As mentioned above, Marie eventually took over the management of the care package herself. By the end of the study year, in spite of all her previous experiences with agency care, Marie began to consider a return to agency care, largely because of financial pressures. The difference in pay rate was substantial: a family managing the care package was paid eleven dollars per hour; an agency managing the same package was paid eighteen dollars per hour, to cover additional overhead costs. The agency was able to pay her thirteen dollars an hour, and deal with the employment and training issues. However, there were some teething problems:

The nursing agency has been a mixed blessing. On the one hand I am being paid more, but they do not seem to be recognizing my role. I do not want to sound as though I am an ‘over-protective member of the family’, but I do insist that my dad is safe. It does not matter if he doesn’t get dressed, but it does matter that he is hydrated (FN 491).

The paid carers employed by the agency had no idea of how painstakingly Marie had built up her father’s care. The introduction of sleeping pills had only come after over a year of consultation. Marie’s outrage that a carer would contradict her in this area comes from the context of that particular battle:

I got a new carer through the agency, but this one is not prepared to take instructions. In the first couple of weeks I wanted to go on an overnight horse trek. In order to facilitate this I got the doctor to agree that John could get three sleeping tablets, for just once. However, this new carer said that she disagreed with that and that she preferred to give him two tablets and another one if he woke up. This was before she proved whether she could deal with the varieties of behaviour coming from John if he did wake up and I wasn’t there. I was outraged (FN 489).

The agency seemed to think that large elements of the care could be passed over to a paid carer. From the beginning Marie’s wishes and needs were not taken into account, and the need to gain her trust seems to have been completely overlooked. Marie talked here about the same paid carer who contradicted her about the sleeping pills:

There were other incidents where I asked her to give a meal at a particular time and she gave it earlier by quarter of an hour one day, and by an hour the next. This let me see that I needed to pay particular attention to whether this person is able to follow instructions. A meeting was set up, and an invitation to me was overlooked. This person developed a nursing plan without reference to me, which simply could not make sense. The nursing agency also asked her to take over the roster ‘to make life easier for Marie’, which was absurd. I develop the roster around the needs of my family, and no one else can do this. I have spent years setting things up to suit others, and now I am adamant that it is going to be set up around my family. It drives me crazy to have to accommodate so many other people, rather than looking at it from the needs of our family (FN 489).

Because of her previous experience with agency care, and also because of what she had learned from working with ACC, Marie did not mess around when she felt that the agency was not listening to her. She immediately brought in her lawyer who wrote a letter to the agency threatening a fine for ‘non alignment of roles with job descriptions’. Marie was prepared to admit that this was a bit heavy handed, and so for her next meeting she brought in a health services related advocate. In the end she managed to make a good working relationship with the agency. She was happy about this and the comment that she made at that end of the study year was telling: “I feel that I have more rights now than when I was dealing directly with ACC” (FN 489). Marie stayed with the agency for a couple of years after the study, but the problems continued to rumble on.

In Hakui’s case, also managed by the same agency, the bulk of the care hours was given to home help, i.e., low grade help which did not actually help to facilitate her into doing activities. In spite of having home help for several hours a week, the house never looked like anything other than messy. Hakui needed order around her, but she never managed to achieve it. The cleaning did not extend to finding systems for keeping the house tidy. Harry ruefully described one particularly ineffectual home help: “Well, there is complete chaos around the whole living area and she is standing there diligently ironing t-shirts” (I 378).

She needed help with transport so the care agency dedicated two hours of care per week for this. She could ill afford the loss of these hours, and the agency tended to employ carers who did not have a license, so often the hours were simply lost. A major problem was the fact that the family was never consulted about the kinds of people employed. Having been presented with people who did not fit into the culture of her family, Hakui was then expected to train and supervise the carers. This put her in an impossible position, since many of her difficulties were about communication. I watched her make some heroic efforts. This is a story from one of my visits to her:

The door is open but she was nowhere in sight. I finally track her down to the laundry in the basement. She has her back to me and is writing in big letters on the lid of the washing machine, with a picture of the workings of the machine ‘the powder goes in here, if you put it directly onto the clothes it leaves white marks which take ages to go’. All around the laundry there are notes about how to do things. The notes seem angry and Hakui’s back is definitely angry. Shortly after that the carer arrives and Hakui explains about the washing to her. She told her how to put the powder in the machine, and about the fact that it takes an hour and a quarter for the machine to do its cycle and would it be possible to have it out on the line before she goes, because she did not do it last time. All of this comes out in a gentle way, very non-confrontational, and she says things like ‘well, maybe it is my husband that I am training to put in the soap powder’ (FN 327).

For Hakui this was exceptionally diplomatic, but it made me realize all the more how she was struggling, since it was so unusual. There was never another situation where I saw her choosing her words so carefully, with such an amount of consideration for the other person’s feelings. She had clearly learned from hard experience that upsetting carers is a bad idea. No matter how much she disliked her carers, no matter how little they fitted into her family culture or failed to do the job she wanted them to do, she still needed them.

In the whole course of the study year this family did not arrive at a satisfactory arrangement with carers. In addition to this they were constantly on tenterhooks about the next time the hours were going to be cut. Hakui was unhappy about using the agency, but she did not see any alternative. It was the same agency that Marie was using and the problems that they both had with staff were very similar. However, Hakui did not have the resources available to Marie to get control of the situation. It would be impossible for her to manage the care package by herself and Harry was far too busy to even contemplate such a step. A big problem for Hakui and Harry was that Hakui was expected to coordinate her own care. She was not able to do this, especially dealing with an agency that did not listen to her.

Hakui fantasised about controlling the care package and using it in ways that would be more to her benefit. She also took her fantasies one step further and imagined a situation of complete freedom with the funding that had been allocated to her by ACC over the years. It occurred to her that much of the money had been wasted, which was particularly galling when she had a family that was struggling:

I was totting up just how much ACC has spent on me. I don’t want to give you the figure … it’s not the kind of thing you want to say really. But, if I had been given that amount of money, I could have bought my way out of a lot of the difficulties in my life, which have been aggravated by the head injury. It is hard to be poor and have slow cognitive processing (FN 311).

Partnership between agency and family

In the last section I told of the relationships of both Marie and Hakui with a particular agency. There was almost no evidence of partnership in these situations during the year of the study. The relationship between Dean and Dorothy was not a perfect partnership, but it seemed to move closer to such an ideal in order to allow Mike to achieve his dream. The story of one major decision that they arrived at during the study year is told here to demonstrate the dynamics of this relationship as they attempted to achieve individualized care for Mike.

All those who cared for Mike were aware that he was playing for high stakes when he said that he wanted a house. If it were only a house, it would have been much easier for them to reach agreement. Dorothy had convincing first hand experience of the vulnerability of a person with disability in the ‘real world’. She knew that good intentions would not protect Mike and she did not want a repeat of her daughter’s story. Her impulse to protect was an understandable stance from a woman in her eighties.

Dorothy kept Dean on his toes regarding the day-to-day care for Mike. If Mike were left alone in the house, the first thing he did was to phone his grandmother. Dean learned to never leave Mike alone, even when his judgment was that Mike would welcome the space. Dorothy was a hard taskmaster and she demanded accountability about Mike at all times. This is how Dean described the situation early in the research:

Whenever there are carers going out I say ‘you can leave any of them behind, but not Mike’. The reason being that he gets straight onto the blower to Dorothy. Is there maliciousness in this, wanting to drop me in it with Dorothy? No, it is just that he doesn’t know what to do, and so when he doesn’t know what to do he phones grandma, and the first thing they talk about is what is happening at the house right now. Dorothy is immediately onto me, and so to cover myself I never leave Mike alone. Mike is supposed to have twenty-four hour care and the dilemma for me is that maybe he doesn’t need that all the time, at least not as hands-on supervision (FN 553).

Dean took his responsibility to Mike very seriously, but he could have a twisted sense of humor about his struggles to present an immaculate front to Dorothy at all times. One day the training centre brought Mike for a visit to Dorothy when he had not shaved. Apparently she was shocked and when I challenged Dean about his levity, he said, “Yes this is probably all show, just wait till you see what I am like after I have actually seen her. It’s this holiday I’ve had, making me feel so good” (FN 576).

Dean represented a more liberal, rights based, approach to disability. He had a strong belief as a health professional that it was his role to listen to Mike and to help him achieve his dreams. However, this was balanced by the financial prerogatives of running a business. It was also balanced by Dorothy’s strong antipathy to the idea of Mike moving away from the current situation. In addition, ACC had designated a key worker to represent them in this case, and her sense was that ACC would never support a move that might turn out to be more expensive. Therefore listening to Mike was not a foregone conclusion. In fact, given all of these factors it was surprising that anything happened at all.

At the beginning of the year I was convinced that Mike would never get a place of his own. It was inconvenient for everyone, from his grandmother through to ACC, Dean and Sheila. At the beginning of the year Dean could not see any creative way around the difficulty.

The big thing is that Mike wants to live alone. I feel like a cad about that sometimes, always fobbing him off. But the fact is that it doesn’t suit anyone, the idea of him living alone. Certainly not Dorothy, because she would have to worry about him. And from my point of view it is difficult because much of the time all that Mike needs is a bit of monitoring, he doesn’t need someone around him all the time. How would you manage that in a house where he was living by himself? (FN 554).

Dean would say things to Mike like, “wait till you get a woman first”, to put him off badgering him to get a house. Many of my conversations with Dean suggested that he was reflecting deeply on the issue.

Am I doing right by Mike, should I enable him to live by himself? There was a meeting with his key worker yesterday, and she said that she did not think that ACC would support the idea of independent accommodation. So who is there to advocate for Mike? (FN 569).

I tried to spend time with Sheila, the paid carer who had an important role in Mike’s life over many years, but she was a difficult person to get hold of. Over and over I found myself turning up for appointments, which never happened. Some time passed and eventually I suggested that she should come to my own house for an interview. It was during this interview that I began to realise that there was a sea shift happening in the thinking around Mike. Dean was starting to talk about moving him into a house of his own, and Sheila really didn’t like the idea. I asked her how Mike was doing and she said:

Dean has this idea of moving him into a house by himself, and he will have more distant care. I do not think that it is a good thing, especially since he will be beside Dorothy, and he will be pestering her all the time. She already finds it difficult enough. And there is the fact that he pesters children (FN 573).

One of the reasons why Dean found it difficult to consider moving Mike into a house of his own was because the financial implications were enormous. He initially considered buying the house next door to the property where Mike was already living with three other young men with brain injury. This would have simplified the care arrangements, since the same carers could work in both houses. However, it would not have achieved Mike’s goal of getting away from Sheila. In any case the house next door was not in good condition and Dean would not put anyone into it (FN 581). Everything seemed to happen quite suddenly towards the end of the study year, and when I had my next meeting with Dean he was no longer weighed down by indecision.

I have just bought a house. It is a couple of streets away from Dorothy. The thing about this place is that it doesn’t need the work. It is ready to move into. I suppose I felt that I could take a risk again. For a while with this job you just dig yourself in, and you get to the point where you are not prepared to take chances. For a while during the year home and work were in turmoil and I felt I couldn’t do another thing. I turned away opportunities then. But now I feel in a good position. My job is much more just administration, rather than hands on now. Last year I employed Andrew, an RN (registered nurse) that I have known from way back. That has taken a huge weight off my shoulders as well. I am able to do this because of having Andrew (FN 581).

Things were looking very good for Mike, but the speed of the process meant that there had been no real process of consultation with Dorothy. Dean had moved from a situation where he fretted about upsetting her in tiny things, to one where he was asking her to accept an enormous change for Mike. He always had great respect for Dorothy, but his loyalty here was to Mike. He said, “No, I haven’t talked about it with Dorothy yet. Maybe I’m going about it the wrong way but it felt like the right thing for Mike. I felt as though I was always fudging it” (FN 581).

More than most people Dorothy knew the costs of trying to help a family member with a brain injury live a good life into their adulthood. It was poignant to watch this elderly woman wrestle with herself about the best thing to do. There was no sense that she was simply handing the decision over to Dean and she still clearly felt responsible for everything that would ensue.

In the shower, when I am washing my hands, I am thinking of him. It is very hard to know what to do. I only want what is for the best. I have known Mike for thirty-three years, since before he was born. When Helen was pregnant with him I went to the Mothercraft courses with her, because she really didn’t know what to do. And it was the same after he was born. Mike was surrounded by his mother’s love, but she needed a lot of help for everything. In many ways this is like the decision that was made when Helen wanted to get married. She wanted to be like everyone else, she wanted to get married and it was a complete disaster. She married an alcoholic…. I feel a bit guilty, and I shouldn’t have to be guilty at this stage in my life. It’s not right. This decision feels a bit like the one I had to make with Helen. I am not convinced that there is enough care in the new house (FN 613).

Dean moved a woman into the house as a caretaker, before Mike moved into it. She had mental health problems and this added another dimension to the process. Mike was delighted because, as far as he was concerned, this was his girlfriend. Dean had a lot of experience dealing with relationships coming and going in mental health settings, and he was very relaxed about the whole idea:

He has this woman there. There’s not much point in talking about contraception to him, he uses it at first, but he thinks that the sooner he starts his family the better. The woman has a child that she has lost custody of, I am sure that she would be very keen to have another. We’ll just have to see what happens (FN 609).

Needless to say Dorothy was not happy about the situation. She did what she could to try to reason with Mike, but he ended up exploding at her: “Mike stood here on Sunday and shouted that he is a grown man now and he doesn’t want to be treated like a boy” (FN 613). For a while after this there was some tension between Dorothy and Mike. He was convinced that she was being overly protective, and that she would never give him a chance to live his own life. This is what he said during an interview at the time: “It feels like she doesn’t want me to live life myself, she wants me to be with Sheila. She won’t give me a chance. She thinks I am going to end up going back to hospital. She won’t let me lead my life the way I want to and to give me a chance to move on” (I 619).

Dorothy tried to persuade herself that Mike might forget about the whole thing. His memory was very impaired, and she allowed herself a brief hope that everything would just go away: “For the last few days he has not said anything, and I am hoping that this means that he has forgotten about it. But I don’t know if I am just being selfish” (FN 613). In the end Dorothy decided that she had to trust Dean to do the best for Mike, while still keeping in mind the possibility of failure for which she was ever vigilant.

I have almost made up my mind. Dean says to trust him; I have always trusted him and we have had a good relationship. I am glad that he has all that medical experience. He says to look at it like taking them away for a holiday. I don’t worry when they go on a holiday, even though he loses them at times and doesn’t know where they are! But the room at the last house (where Mike had lived with three other young men with brain injury) can only be kept open for a month. Dean can’t afford to keep it open for any longer than that. Then if it failed after that he would have to go back to the mental health house and he would just hate that. I don’t know how I would tell Dean that I have changed my mind, so long as there is enough care put in place (FN 614).

When I met Dorothy a few months later she gave me a warm welcome and said, “I’ve had to eat my words, Mike is doing well.” She was clearly very happy about the situation. A major transition in Mike’s life seemed to have been managed successfully, though it turned out to be a bit of a compromise compared with what Mike had been hoping for. The girlfriend had moved on and Mike was in the house with three other young men with brain injury, just different ones to those he had been living with before. Neither had he bought the house, it was Dean’s property, but it was not clear whether Mike understood this. Essentially the situation was identical to the one he had been in previously, except that he no longer had Sheila caring for him.

Summary

In this chapter I discussed the issue of entitlement in the two cases where families were particularly struggling. It was not the intention in this research to focus on issues of entitlement or evidence of an adversarial system. However, it is important to elucidate the context within which the carers were practicing. There was not a lot of evidence of a strongly adversarial relationship with ACC at the time of the research, although all families felt somewhat battle-scarred from the years that preceded. Interestingly, much of the sense of being in an adversarial system came from contacts with health professionals, who seemed to act as representatives of ACC. Finally, I discussed the ways in which resource allocation tended to support the practice of individualized care. There is little evidence that health professionals were strongly supportive of an individualized approach. However, the funding pathways allowed by ACC gave the opportunity for elements of individualization. Family fundholding was the most flexible system and therefore allowed the greatest degree of individualization. A good partnership between family and agency was also an effective way of promoting this end. In the next chapter I examine the ways that carers managed to create individualized processes of care, no matter which system they were working within. The context is therefore important, but it is not the only determining factor in developing a good practice of care.