The right to have a support person at an assessment

In New Zealand the Health and Disability Commission Code of Rights states that people have a right to support at any medical appointment. This is particularly important for those with brain injury who may forget what has happened during an appointment. It is also important for those who may misrepresent themselves as coping better than they actually are, either because of pride or because of a lack of insight. Finally and most importantly from the perspective of this writer, it is also important for this group because they are living in a system without the protection of common law. Those who live in NZ know that we gave away our right to sue, in exchange for a no-fault compensation system. It has now been in operation for over a generation and is part of the NZ psyche and a major contributor to social capital. However, some distortions have arisen whereby the rights of those who are disabled by injury are becoming eroded. I argue here that this has been able to happen because of an erosion of the integrity of health professionals and the consequent failure of health practitioner associations to deal with the ethical challenges that are implicit in a no-fault system.

The potential for corruption has been especially evident at times when ACC is making major cutbacks. Health professionals can begin to collude in a process that disadvantages claimants to the extent that they lose their entitlement. Therefore a second very good reason for having a support person is to ensure that the assessor knows that there is a witness to the process. Someone cares about this person enough to sit with them through an interview and assessment process.  However, recently some health professionals have been refusing access to support persons and they have been appealing to their professional associations for corroboration of this decision. There is a claim made that a support person is the equivalent of the third party observer (from the litigious US context), and that furthermore this threatens the integrity and validity of the assessment materials. The implication being that support people are able to coach the person they are supporting and that they will also be able to ‘spy’ on the assessment materials.

These arguments are a fundamental distortion of the reality and they breach the possibility of the most basic level of advocacy for people with brain injury. This is the group who are among those most likely to cut from ACC books and they require some kind of protection. The presence of a support person may be the only social capital that they can draw on. Furthermore, there simply is not the expertise among support people to begin to offer the kind of threat that is posited to the validity of assessment material.  The support person is generally a relative or a friend, or it can be a liaison officer from the Brain Injury Association. This is generally a non professional person, employed by the BIA because of their family experience of brain injury. This is the group who are especially being targeted for exclusion from interviews on the grounds of their capacity to be ‘third party observers’. They have no interest in learning how they can coach those they are supporting, rather they want to provide support to those who are justly terrified by the process of assessment.

The disability movement is increasingly highlighting the issues of power imbalance between health professionals and those they are supposedly serving. This has particular resonance in the situation that has arisen in NZ where some health professionals have a reputation for invariably denying the aetiology of the particular conditions, such as brain injury. This belief tends to improve their employment prospects with ACC. This has led to situations where brain injury has been denied in situations where a person has been repeatedly assessed as having this condition over a period of over 15 years. Effectively this becomes a statement about malingering, which is incredibly powerful in terms of its capacity to destroy the integrity of the injured person. Such statements would be actively challenged in a common law system, especially in situations where fault could have been demonstrated. One of the weaknesses of the NZ system is that is has never established a permanent pension for those with severe disability, which leaves open forever the possibility that a compliant health professional will assess them as being suddenly cured of brain injury.  It means that in New Zealand, no matter how disabled the person is, their disability can always be open to reassessment and reconfiguration.  In another country if they were fortunate enough to have their condition accepted in a court of law (and there was fault established) then they would not be expected to continue to prove that this condition existed every year for the rest of their lives. 

In these circumstances it is hardly surprising that the injured patient would ask for a support person to come to an assessment. Yet it seems that some health professionals are now threatened by anyone who acts as an advocate for their clients. One has to suspect their motivations, even if they are couched in seemingly impeccably professional terms.  In New Zealand, once one gets to the review process, the judgement of the ACC employed assessor has been held as sacrosanct (Ramsay 2002). There is very little subtlety about interpreting whether that health professional may have a particular bias in favour of their employer (ie ACC).  In a court of law it would be possible to tease out some of these distinctions, but one of the disadvantages of the New Zealand no-fault system is that major savings are made by avoiding what would happen in a court of law. This unintended development of the ACC system has placed injured people in a very vulnerable position and there is little evidence that professional groups have adequately (or at all) reflected on the consequences for patients of their members having power that is not regulated by legal processes. The injunction to “first do no harm” seems to be fundamentally flawed within such a regime and health professionals are implicated in processes whereby thousands of people have been ‘cut’ from ACC. In the late 1990s the numbers of long term disabled on ACC were reduced from 30,000 to 15,000. During 2010 there has been another programme of such cuts and I personally know of people who have been unjustly removed.

There is growing evidence that those health professionals who are prepared to work with ACC in this way are effectively able to earn salaries that are more in line with corporate executives than health professionals. For example, psychologists can earn up to $540,000 for undertaking assessments for ACC. A small number of psychologists are known to conduct between 1000-2000 assessments per year (which staggers the mind). Finally a single assessor was paid between $1.3 and $1.6million by ACC for services from 2005-9, all of which were undertaken in addition to a full time job in the public health service (Barraclough and Forster 2010).

There are always problems at the edges of every system and sometimes it is hard to raise interest in these issues because they are so particular to that system. However, the NZ experiment with no-fault compensation has the capacity to demonstrate that there is an alternative to tort law, which is based on fundamentally egalitarian principles.  In a world that seems to offer few real alternatives to the power of major insurance schemes this experiment is a treasure that is worth preserving. For this reason, it is important to tease out the issues that have begun to compromise the system in order to explore whether this means that there cannot be an alternative to tort law. The issue of advocacy for people with brain injury who are being denied the right to have a support person seems to be one of those issues that should be setting off alarm bells. The onus is on health professionals to prove that they are not dividing off people with disability and isolating them from any natural supports, in order to make them more vulnerable. The measure of a society is how it is prepared to care for its most vulnerable, and the worst indictment of a health professional should be that they would deliberately exploit the vulnerability of the group that they serve. If ACC has allowed this example of structural violence to corrupt the practice of individual health professionals, it is up to professional associations to put ethical measures in place that call such practices to account.