A BRIEF OVERVIEW OF ACC FOR PEOPLE WITH SEVERE BRAIN INJURY AND THEIR CARERS
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/overview-acc-severe-brain-injury.htm
In New Zealand support and rehabilitation for the person with brain injury comes from an insurance corporation, the Accident Compensation Corporation (ACC), rather than through the public health care system. The accident compensation scheme in New Zealand came into effect on 1 April 1974 and it was based on five guiding principles: community responsibility, comprehensive entitlement, complete rehabilitation, real compensation and administrative efficiency (Woodhouse, 1967). The New Zealand system is unique in providing a social contract where the right to sue is traded for “no-fault” compensation, which substitutes for the common law system that still prevails in most other western countries.
The term “community responsibility” is explained by the second of the Woodhouse principles: that “all injured persons should receive compensation from any community-financed scheme on the same uniform method of assessment, regardless of the causes that give rise to their injuries” (Rennie, 1991). In New Zealand the principle of community responsibility to give comprehensive entitlement is a fundamental protection for all citizens. It was, in effect, traded for the right to sue for damages that was taken away in the ACC Act. This feature was carried forward in the 1982, 1992, 1998 and 2002 statutes. There are commentators who say that the concept of comprehensive entitlement has been eroded through incomplete cover, putting the ACC scheme in breach of its social contract. It may be the case that New Zealanders have given up their common law rights too cheaply (Miller, 1999) and this research opens a window on that question.
It is now over thirty years since the introduction of the first ACC legislation and the institution has developed a strong culture of its own. This provides a unique context for the care of adults with severe brain injury and it makes it necessary to provide some background detail about the system. Aspects of ACC that have particular relevance to the research presented here include: a) entitlement; b) an adversarial approach; c) resource allocation. Each of these is outlined in turn below.
In this section I deal with the issues around entitlement. In the first place ACC can only cover accidents that have been caused by an external injury, which can lead to difficulties where there is any hint of another condition or the possibility that the condition has not been caused by an accident. Even more threatening to people with brain injury is the fact that it can be exceptionally difficult to prove a brain injury and many people pass unrecognized, leaving them without any form of compensation.
The 1992 Accident Rehabilitation and Compensation Insurance Act was a landmark for people with brain injury, in a negative sense. It followed the statement made by the (then) minister Bill Birch that ACC was harboring “hidden unemployment”. By this he meant that there were claimants receiving long-term weekly compensation who had effectively recovered from their injuries and yet who had not returned to paid employment for unspecified reasons. In a stroke, he redefined the status of many claimants from “injured person” to “unemployed person” and served notice that their eligibility under ACC was about to end (Duncan, 2002). The interpretation of the Act by the (re-named) Accident Rehabilitation and Compensation Insurance Corporation meant the development of a scheme that was intended to be harder to get into and easier to get out of. This led to a process that was commonly referred to as “cutting the tail”. It is highly likely that people with brain injury were among those most affected by the exercise of “cutting the tail”, which took place between 1997 and 2003, i.e. the period just before this research began. There are anomalies in the system that particularly affect women who have been housewives (i.e. non-earners) prior to their accident, for example the (temporary) removal of lump sum payments and restrictions around who is entitled to vocational rehabilitation.
Only those who have had an injury are entitled to help through ACC and the scheme has been haunted from the beginning by complex policy considerations arising from the creation of a distinction between injury by accident and injury by illness. The difficulty of making and fairly implementing this distinction is one of the reasons that such a scheme is rare in a worldwide context. The disputed border between sickness and accidental injury continues to result in “distasteful anomalies” (Stapleton, 1986). This has produced many skirmishes, which in turn have impacted on the goals of administrative efficiency and comprehensive cover, since these reviews are costly in terms of the time of lawyers and medical specialists. Skirmishes on the borders can have an effect on people with brain injury when there is a question of dual diagnosis. In such cases, it becomes critical to establish the effects of the accident as something quite distinct from the other condition.
The legislation implementing the Accident Compensation Scheme in New Zealand did not specifically exclude sickness and disease until a 1974 amendment, which said that “damage to the body or mind caused exclusively by disease, infection, or the ageing process” was excluded from the definition of “personal injury by accident” unless specifically covered under the occupational disease provisions (ACC Act 1974, S.2). In 1992 this exclusion was further strengthened by replacing the word “exclusively” with “wholly or substantially” and it now reads that the exclusion is for: “personal injury caused wholly or substantially by gradual process, disease, or infection, unless employment related, medical misadventure or a consequence of personal injury or its treatment” (Accident Insurance Act 1998 (NZ) S.29 (2) and 2001 Act s26 (2)) in Ferguson (2004). Woodhouse predicted the problems that this would cause in para.17 of his report:
It may be asked how incapacity arising from sickness and disease can be left aside. In logic there is no answer. A man overcome by ill health is no more able to work and no less afflicted than his neighbour hit by a car. In the industrial field certain diseases are included already. But logic on this occasion must give way to other considerations (Woodhouse, 1967).
These other considerations included the fact that there were no efficiency gains to be made by such a conversion. The Royal Commission reckoned that the administration cost of the common law system was forty two percent of the amount paid out in claims (para 444), i.e. this was the amount that went to lawyers and administrators when a case was pursued through the courts. It proposed that the new scheme could be run for eleven percent (para. 445), which was a saving of more than twenty percent. In recent years it has cost ACC about seven cents to deliver a dollar in benefits (Palmer, 2002). This kind of efficiency saving is not available to fund a comprehensive sickness system (Easton, 2002).
The injustice arising from the fact that two people with equivalent brain injuries, but different entitlements depending on the cause, is not the subject of this research. Of more immediate relevance to this study are those people who are legally entitled to compensation from ACC, because their injury was caused by an accident, but who are not receiving it. In the previous chapter the difficulty of identifying severe brain injury was discussed, together with the possible consequence that only a small percentage of people with moderate to severe brain injury who are entitled to care from ACC are actually receiving it.
If it is true, as I suggest, that only approximately10% of people with moderate to severe brain injury are currently getting compensation it is easy to imagine that ACC might struggle to meet the needs of the other 90%. The cost of traumatic brain injury over a lifetime is astronomical. ACC figures indicate that in 2002, the 132 new cases labeled moderate to severe TBI led to claim payments of $3,603,579 for that year. In 2003, there were 1477 ongoing cases of TBI (i.e., people with claims originating more than a year previously), which led to claim payments of a further $93,728,240 (Larking, 2004). It is easy to imagine how these discrepancies might lead to an adversarial approach on the part of ACC and this is discussed in the following section.
The question of whether people are getting what they are entitled to is a serious consideration, since the public has given up the common law right to sue.
The removal of that right must have a built in guaranteed confidence in its replacement. There must be a confidence that anyone involved in an accident is able to receive a proper decision on their entitlement under the law with the minimum of fuss and cost, but given the present legal and medical niceties and the complexity of the statute and its administration, and the lack of a complaints system, there is little wonder that confidence has eroded (Trapski, 1994, p.108).
The story of “the tail” (Caygill, 2002) is one that is very familiar to those with long-term claims on ACC and it is these people who are of most interest in this research. The “tail graph” shows the number of ACC recipients on the ACC “tail”, that is, those who were receiving earnings related compensation for more than 12 months. In the middle of 1997 there were roughly 30,000 such claimants, but by the beginning of 2004 there were fewer than 15,000. This is told as a success story by ACC, but it could equally be seen as evidence of a scheme that has denied claimants their legal entitlements whilst continuing to increase its investments (Mason, 2004). It is very likely that people with brain injury were among the major groups affected by these cuts, given their problems with invisibility and advocacy.
Much of the “cutting the tail” exercise was carried out under the guise of the Work Capacity Test. This was one of the key elements of the 1992 Act, which was carried forward to the 1998 Act. What the “tail” statistics do not tell was the way in which many people were simply shifted onto the social security system, in spite of continuing disability. Internal reviews by the Department of Social Welfare of those payments that were most immediately and most directly affected, namely sickness benefit, invalids’ benefit and disability allowance, pointed to a marked increase in the number of people receiving such assistance and the duration of the assistance in the relevant years (Todd, 2001).
The 1992 Act also abolished the permanent pension. Woodhouse had recommended there should be a permanent pension to allow severely injured people the financial security to get on with their lives while recognizing their loss. However, many staff were reluctant to use this provision. This meant that seriously injured people needed to continue to supply ACC with three-monthly medical reports in order to continue with their earnings related compensation and social rehabilitation payments. With the passing of the 1992Act, this way out no longer existed and severely disabled claimants were open to continual medical assessments arranged by and paid for by ACC, with all the attendant risks of becoming “part of the tail” (Moon, 2003, p.93).
The brain injury community usually saw vocational rehabilitation as a threat. There were times when vocational rehabilitation would have been preferable to nothing, but it was not offered because it was closely targeted towards particular groups. It was offered only to those who had been earners immediately before the accident in question and it was also required to be “cost effective”. The implications were enormous for women who were housewives at the time of the accident and for all young people. There was a hostile reaction from groups who believed that the restricted access to coverage was a breach of the social contract, which was perceived as underlying the introduction of the original scheme (Harrison, 1993).
The original scheme had made no provision for lump sum payments, but Unions insisted on them during the early passages of the Bill and these were added to the Act. The removal of lump sums through the 1992 Act meant that people who were unable to prove a loss of income received no financial redress for their injuries under the legislation beyond a small periodic payment called the independence allowance (Duffy, 2002). Obviously this had major implications for housewives and young people who were not earning at the time of the injury. Feminist analysis of the new scheme demonstrated that women, who formed the majority of non-earners, were particularly adversely affected because of the removal of this kind of benefit that was previously available to those outside the paid workforce (Kelsey, 1993).
The Injury Prevention Rehabilitation and Insurance Act 2001 finally restored lump sums in 2002, but only for people who had accidents after this time. The way of assessing for this lump sum is based on an assessment of impairment, determined by medical observation using the American Medical Association’s (AMA) Guides to the Evaluation of Impairment. This has been criticized since it gives no indication of the actual impact of a permanent injury on a person’s real-life functional abilities (Duncan, 2002). Many authorities in the field have argued that the AMA guides should not be used to determine disability, and that they are a tool for limiting financial liabilities and for cost-shifting rather than for identifying genuine needs (McCluskey, 1998; Pryor, 1990).
An adversarial approach
In this section I discuss the way that the process of “cutting the tail”, which took place just before this study began, left many families traumatized and with strong memories of an adversarial approach by ACC. The findings of the Trapski report (1994) remain relevant to the experience of participants in this research and for this reason the findings and recommendations are given at some length. In particular there was concern expressed at the poor handling of medical reports by ACC staff, both in terms of ignoring findings and a general suspicion about the independence of such reports. Trapski suggested that ACC was very prone to resort to the review process as a matter of course, even though this disadvantaged the claimant.
ACC has some complacency about claimant satisfaction, which is reflected in the 2003/04 annual report for ACC, reporting that claimant satisfaction had reached an all time high of 88%. In 2004/05 it was reported as being 85% (Chal & McLea, 2005). However, even these reports acknowledge that it is long-term claimants who are most likely to be dissatisfied. The participants in this research are long-term claimants.
Customer satisfaction statistics notwithstanding, there has been evidence of an adversarial culture within ACC in the past, which is significant in terms of the participants in this research. The adversarial culture in ACC was addressed in a significant report (Trapski, 1994), which was commissioned by ACC, pursuant to section 8 of the ACC Act 1982 by warrant under seal of the Corporation to inquire into the Corporation's procedures. Trapski’s report told of repeated complaints by claimants of a confrontational and adversarial attitude towards them; they felt that staff doubted everything they said. Claimants said that right from the commencement of their relationship with ACC, officers seemed to openly and consistently doubt their integrity and their honesty. Claimants were referred to multiple specialists and in the absence of any other explanation these multiple referrals were seen by claimants as an endeavor to obtain a report that was favorable to ACC, rather than to them. Trapski had much to say about the system of medical reporting, including the following:
I was concerned that much of the valuable information which had been obtained as a result of references to medical specialists remained on files unactioned, often to the detriment of the injured person's rehabilitation, simply because the report had not been referred on to a person of appropriate medical experience or knowledge (Trapski, 1994, section Biii).
The relationship between the Corporation and the medical advice that it received from specialists was the focus of further comment. The Corporation seemed to arrive at negative decisions, in the full expectation that some claimants would then ask for a review: “Corporation staff seemed content, almost as a matter of course, to rely on the review procedure to correct the effects of its negative attitude” (Trapski, 1994, p.28).
There are many people for whom the process of taking a decision to review would present an insurmountable hurdle. In a published PhD study of back injury (Moon, 2003), a lawyer estimated that the cost of conducting a review of an ACC decision was between $1500 and $3000. ACC, on the other hand, was considered by some to have unlimited funds to defend itself with, which made the system inequitable. The gravity of such reviews was reflected in the fact that they were often precursors to court cases and only the evidence presented at review could be used at district court appeals. Therefore if a claimant went into a review without all the appropriate reports, such as alternative medical or occupational assessments, it became virtually impossible to proceed to the District Court and win.
In spite of being published in 1994, there is little suggestion that this report is out of date. In 2005 Trapski (now retired) replied to a request by Su Nicholson, a claimant with back pain, for another inquiry (Phibbs, 2005). In this letter he said he was saddened that ACC had reverted to its old practices and agreed that there was a need for another inquiry, although he could not carry it out. In his original report Trapski (1994) made a number of recommendations, most of which are directly relevant to my research:
1. The Corporation must positively address any inclination toward adversarial attitudes by members of its staff toward claimants. Claimants must be given a measure of security and assurance particularly at the early stage of the claims process. They must be kept fully informed of the progress of their claim. Any mistakes must be acknowledged and put right immediately.
2. The Corporation must seek and take note of appropriate legal and medical advice before making decisions. It must make every effort to ensure that the right decision is made the first time, and should not rely on the review process to put things right.
3. Medical practitioners reporting to the Corporation must have clear working knowledge of the legal requirements of the Corporation’s statute.
4. Claimants should be informed, preferably in person and then in a confirming letter, when specialist medical examination is required and why. They should be informed of the specialist suggested by the Corporation and given the opportunity to nominate an alternative specialist if the suggested practitioner is unacceptable to them. They must be informed that their consent is required to the specialist reporting to the Corporation and to the Corporation's supplying the specialist with such medical information as it holds. In all matters of consent the Corporation must ensure on each occasion that claimants are fully informed about what is to happen.
5. Claimants should be given a copy of the Corporation's instructions to specialists, and a copy of the specialist's subsequent report. They should also have the opportunity to comment on the report and to correct any factual errors or obtain another report if they consider that necessary or appropriate.
6. The Corporation must ensure that the opinions that it obtains from medical practitioners are independent; not only of the claimant but also of the Corporation and that they are seen to be so.
7. The Corporation must institute and operate an effective method of recording, investigating and dealing with complaints. This must include a system of reporting promptly to the claimant the result of the investigation.
8. The Corporation should report perceived breaches of professional obligations and standards in the same way, as it is required to in cases of medical misadventure under the 1992 Act (p.112)
One of the great advantages of ACC is that resource allocation has allowed a system to develop which contains some elements of individualization around the needs of the adult with brain injury. Families have felt this as the most pressing concern and they have responded positively to the opportunity to manage care packages. However, there are some aspects of management that seem to cause universal difficulty, especially contact with paid carers, who have come through agencies. An increased focus on rehabilitation led to an explosion in the numbers of health professionals providing services through ACC in the 1990s. However, professionals do not seem to have a major role in the advancement of individualization of services for adults with brain injury. Their role seems to have been confined to that of gatekeepers, which largely defined their potential relationship with the participants in this research.
Brain injury rehabilitation is primarily about providing a system of individualized support and intervention that ameliorates and compensates for the person’s deficits or losses, while developing and enhancing the person’s remaining abilities and strengths. Rehabilitation after brain injury is focused on adjustment, acceptance of painful limitations through the positive use of systems of personal support, training and environmental enhancement (Paula Stickings (pers.comm) in Butler, 2000 p.124).
The above quotation comes from a letter written by an advocate on behalf of a person with brain injury. It was written to ACC in order to remind them of their responsibilities to this person and to refine their understanding of what that responsibility might entail. Such advocacy coming from families and advocates of adults with brain injury is a useful reminder of why it can be so critical for families to have financial management of care packages. Without this kind of control families can feel that there is little understanding displayed of the real needs of the adult with brain injury.
Through ACC the person with brain injury and their carers have access to a version of individualized funding. In its simplest form individualized funding can be defined as “public funding that is allocated directly to an individual, or in the case of a child to their parents, to meet disability related needs” (Dowson & Salisbury, 2003 p.17). The two fundamental characteristics of this system are that the funding amount is determined by direct reference to the needs of the individual and/or their family, and that the individual and their personal network determine how the funding is spent. One significant problem with individualized funding found by Lord and Hutchison (2003) was the difficulty of allocating individualized funding in a way that was equitable and accountable to the funder and the person. This was done in different ways in different places, but there was rarely any direct involvement by government. This has been a real issue for ACC and the lack of clear decision-making processes about the allocation of funding has led to discontent.
Criticisms of individualized funding say that it can lead to privatization, uncertainty and a low wage sector. The positive side is that it can give genuine options to consumers and break up service monopolies. In Canada, Lord and Hutchison (2003) reported on how it led to privatization in places where the government was not prepared to fund infrastructure and this limited the capacity to facilitate family and personal networks. In other places the non-profit sector was enhanced, especially where the government was prepared to fund infrastructure and technical supports. They suggested also that the government had a key role to play in setting employment standards and reasonable wage standards to avoid the development of a low wage sector.
Paid carers are usually brought in through an agency in the first place. The agency model of care is not always successful because paid carers are typically inexperienced, some are unreliable and arrangements are inflexible. This inflexibility of formal paid care (for example, inflexible hours, tasks and roles) has long been a complaint of people with disabilities who depend on agency carers (Batavia, DeJong, & McKnew, 1991; Mattson Prince, Manley, & Whiteneck, 1995).
In McCluskey’s (2003) study, half of the family carers found themselves engaging in more care maintenance, and feeling more stressed when paid carers (managed through an agency) were present than when they were absent. The supply of carers promised by the agency either did not materialize or could not be maintained. Family carers found themselves providing support and training to staff instead of the agency, or they performed the work themselves. This was not what had been expected when enacting a decision and making a change to the way of living. Some families, particularly those with children, felt they would have been better off with much less or no paid care at all. McCluskey’s findings have ramifications for agency accountability, as well as for health professionals who routinely recommend a set amount of paid care.
The ACC system has permitted the development of some flexibility in the funding of carers. For instance, family members have been paid as carers since 1993. One example of how such a care package was managed is given in my Master’s thesis, where I described a family who had control of the care package for their son (Butler, 2000). This allowed them to employ a coordinator (myself) for twenty hours a week, which is vastly more than the two hours a month indicated by McCluskey (2003) as a maximum in Australia. The young man with brain injury lived alone in his own home with twenty-four hour care and I describe here the role in some detail because there is so little published literature on the subject. My role involved the provision of supervision and training on both an individual and a group basis for a team of five carers; involvement in all aspects of interviewing new carers; communication with the family who were living at some distance from their son and working with them to integrate the care of their son with the overall family culture; setting up several supported employment positions until I found one which became relatively self-sustaining; and working directly with the young man for several hours a week, initiating projects and ensuring that they were maintained. It was through this regular contact that I was able to ensure that the direction of the overall care package was coherent, and to help the young man to find a sense of direction and a social network that would last him for years to come.
The New Zealand Guidelines Group (2006) identified that there is a substantial research gap in evaluating the impact of various service configurations, service delivery methods and specific interventions currently offered in New Zealand for people with brain injury, particularly from the perspective of the individual with brain injury and their family. In spite of a general lack of understanding of what is most likely to work effectively, there was a large vote of confidence given to groups of health professionals during the 1990s. A rapid growth in the numbers of health professionals contracted by ACC was indicated between 1991 and 1999, with a doubling period of 8.4 years. There was a massive increase in contracts for counselors and psychologists (from 0 - 1170); physiotherapists and occupational therapists also increased, although not to the same extent (510 - 1325 and 3 - 104 respectively) (Duncan, 1999). The increase in health professionals was directed by ACC as a way of responding to the increased emphasis on rehabilitation in the 1992/8 Acts.
An increase in resource allocation to health professionals, however, is not a reflection of an individualized approach. In fact it may reflect an increased emphasis on assessment rather than on rehabilitation because within the no fault compensation system medical diagnosis and etiology become the factors determining eligibility for compensation. Decisions are made by health professionals about the care needs of clients, but there is no empirical body of evidence on which these assessments are being made (McCluskey, 2003).
In relation to stroke rehabilitation, it has been suggested that up to a quarter of all the problems that stroke survivors and their carers experience are the direct result of “system induced setbacks” (Hart, 2001:101) caused by the inability of formal structures to acknowledge and account for the strategic actions taken by lay people. Thorne et al (2000) argue that professional models of working with carers are underpinned by three basic beliefs that are liable to contribute to these kinds of system induced setbacks in any country: the professional clings to the belief that they are the expert; they are the gatekeepers to services and expressing contrary views may well restrict access to services; and connected to this is the belief that the ideal patient should be compliant and therefore those who raise questions are liable to be labeled as difficult.
In a depressing study about the relationship between nurses and family caregivers (Ward-Griffin & McKeever, 2000) it was concluded that relationships with professionals remain essentially exploitative rather than being based on a true partnership, and are driven by economic rather than humanitarian concerns. Professionals are aware of the needs of carers, but still tend to denigrate and thereby fail to value the emotional and intellectual knowledge that carers hold. Ward-Griffin further asserts that professionals often lack the skills needed to engage in the complex negotiations that are required to reconcile potentially differing expectations, values and goals. In New Zealand the role of the professional as gatekeeper to services has been emphasized through the ACC system and this has the potential to profoundly alter the relationship with families affected by brain injury.
It is not aimed to give a complete overview of ACC, but rather, to focus on those aspects of the system that have most relevance to people with severe brain injury and their carers. The vulnerability of adults with brain injury is exposed by questions of entitlement and it is all too easy to see reasons why many of them might not be getting what they are entitled to. It is likely that the exercise of “cutting the tail”, which reduced ACC claimant numbers by over a half, has critically affected this population. This exercise may have compounded the difficulty with identifying moderate to severe brain injury, which gives some credence to my suggestion that only a small group of this population are actually getting what they are entitled to.
Those fortunate enough to receive adequate compensation have invariably negotiated a way through the kind of adversarial culture described by Trapski (1994). By definition, it is unlikely that any adult with severe brain injury could do this without the assistance of a capable carer. The advantages of ACC become apparent once an adequate compensation package has been achieved, since there is some individualization permissible within these packages. Families have responded with alacrity to the flexibility given by individualized packages. Unfortunately, the system within which support services are supplied can make these services appear more obstructive than helpful. For example, agency care is associated with inflexible paid care and health professionals play a major role as gatekeepers rather than purveyors of resources.