This is a story that I have heard in several different ways over the last few years and so I have fictionalised a version of it here to highlight some of the issues that arise around “service capture” for people who are severely brain injured. I connect this to the outcome of a recent Human Rights Review Tribunal in favour of family carers.
“Service capture” describes a situation where there is funding attached to an individual with severe brain injury and a residential facility moves to exclude the family. They do this because famlies tend to advocate for good care and this is labour intensive. For example, learning to communicate following brain injury is time consuming and therefore more expensive in terms of staff. The “service capture” argument is usually based around some version of a story where there family is seen as interfering/not grounded in reality/ not really advocating for the person with brain injury. This kind of “care” will eventually and inevitably break the spirit of both the brain injured person and their family unless they can find some support. Incidentally it is also extremely bad training and supp0rt for the paid staff in these facilities, who often get their greatest job satisfaction from just this kind of work.
In 2008 I was an expert witness in a Human Rights Tribunal (in NZ) about the issue of paying family carers, in situations where there was funding allocated and no paid carers available to do the skilled work necessary. The Ministry of Health argued very hard against paying families on various grounds that revealed a deep prejudice that was never substantiated by written policy. One of their arguments was about “equality of outcome for the disabled person”, by which they meant that the residential units were able to provide a better outcome than the families were. It an example of “service capture”, where services want to keep the funding even though a much better job could be done by families if they had control of the funding. This may seem to be different to the arguments used to stop families from interfering once the person has been admitted to a residential facility. However, the reasoning is essentially the same – families cannot be trusted to provide good outcomes for the person with severe brain injury.
My witness, based on doctoral research was able to give empirical support for the concept that families, especially those who are supported, actually do an excellent job. I was also able to demonstrate that people with severe brain injury are capable of making major improvements in their lives many years after the injury and long after they would be expected to plateau. The improvements were a direct result of sensitive flexible care on the part of the families. The importance of this witness was acknowledged recently by Rosslyn Noonan (Chief Human Rights Commissioner) at a disability colloquium in Dunedin. She said that this was a good example of empirical research that was used to form case law.
Amazingly, on 8th January the judges came out in favour of the families. This is an astounding finding, because it challenges the arguments for “service capture” at many different levels. It may be one small step to beginning to accept families as equal partners in work with brain injured adults.
“Anthony is 22 years old and had a severe diffuse axonal traumatic brain injury from a motorcycle accident in 2007. He is trapped within ‘a broken body’, cannot speak yet, but his mother recognises that he has all his thoughts, memories and personality. This is what he wrote recently: “please help, I am trapped”.
When he was transferred to the long term residential care the house manager indicated that her staff was not trained to communicate with patients by writing (Anthony’s only effective mode of communication, though he can indicate yes and no). The policy of refusing to communicate in this way seems to be corroborated by a report that indicates that Anthony cannot reason or process thoughts. Yet his written messages make sense and it seems highly likely that he is wants to communicate something of his dislike for the place that he is in.
There is a deliberate and sustained policy of excluding his mother from meetings, although she attends him daily. His therapists are in favour of any mode of communication that will foster his growth, but their voice is also being ignored. Anthony is understandably furious and depressed that no one asks him whether he wants to write.
Angela, his mother is very concerned that Anthony’s “guardians” are not acting in his best interest and that they are financially motivated (they receive around $x/day for Anthony – you can fill in the amount here, the family feel they could do a better job for the dollars being paid). She has been to a liaison officer who advises her that she needs some credible authorities behind her to speak to the fact that such treatment of Anthony is contra-indicated. Through all of this she is sustaining a daily connection with her son as well as working full time.”