Brain Injury Australia’s Executive Officer Writes on the Languages of Disability; Watch What We Say

Though it’s been fighting the good fight for over 30 years, big wins by Brain Injury Australia in policies affecting people with a brain injury have been hard to come by. But Brain Injury Australia wants to share one recent small, but symbolic, gain it’s made in the way that people with a brain injury are described, by one of Australia’s largest insurance providers.

The New South Wales Lifetime Care and Support Authority provides lifetime care and support for people who have been severely injured in motor accidents in New South Wales. Traumatic brain injury (TBI) remains the most common injury type – comprising 70 per cent of adult clients and 85 per cent of children. In 2013, the Authority “identified a shortage of skilled clinicians and support workers throughout New South Wales who were able to adequately support participants with challenging behaviours living in the community. The Authority subsequently approved funding for a project to produce a strategic action plan to build sector capacity to support its participants with brain injury who exhibit challenging behaviour.”

“Stage 1” of the project “culminated in an Appreciative Inquiry Summit day on 26 August 2014. At this day steering group members, senior Lifetime Care and Support management and other invited stakeholders from brain injury services, advocacy groups, research bodies and the department of education attended a whole day meeting in Sydney. The purpose of the meeting was to discuss the findings to date and to outline future goals and designs that might guide capacity development in this area.” (“Appreciative Inquiry is a collaborative search to identify and understand a system’s strengths, its greatest opportunities and also its people’s aspirations and hopes for the future. It is an approach to complex behaviour change that has been found to be helpful in multiple organisations and service systems throughout the world.”)

You can download the report on “Stage 1” of the project – “Building sector capacity to enhance behaviour support for individuals with traumatic brain injury living in the community – An appreciative inquiry approach” – here.

“Stage 2” of the project included the establishment of six working groups to pursue the six “deliverables” from “Stage 1”. I served on three of these working groups as a “consumer representative”. At some stage during “Stage 2”, working group members decided to change the Project’s descriptor of behaviour from “challenging behaviours” to “behaviours of concern”.

I wrote to the Project’s manager, clinical psychologist Dr. David Manchester. My email follows, below. David’s report on “Stage Two” includes the following “Special Note on Terminology: The term ‘challenging behaviour’ continues to be used here in place of the more recent term ‘Behaviours of Concern’ adopted by some services and researchers. The consumer representative and person with lived experience of severe brain injury requested the term challenging behaviour be carried over from the Stage 1 report for specific reasons and these are set out in Appendix A. Working group members discussed terminology and agreed.” Download the report of “Stage 2” of the Project, here.

2nd July 2016 e-mail from Nick Rushworth, Executive Officer Brain Injury Australia to Dr. David Manchester, Director MLR Consulting Psychology and Project Manager
‘Building sector capacity to enhance behaviour support for individuals with traumatic brain injury living in the community; An initiative of icare lifetime care’

“Hi David,
As requested; my ‘case’ for the use of the descriptor ‘challenging behaviours’ over ‘behaviours of concern’. I should say that, given the working groups had apparently adopted the latter (missed that meeting somehow) over the former – which, it seems, was vastly preferred in your report on Stage 1 of the Project; Building sector capacity to enhance behaviour support for individuals with traumatic brain injury living in the community: An appreciative inquiry approach – I thank you for indulging me on this. But I feel strongly about ‘our’ language(s), about how people with a brain injury are described – as ‘brain injured’ ‘burdens [of care]’, for example.

This, following, is where I’m coming at this from (a recent ‘speech’): “…Because ‘challenging behaviours’, sometimes called ‘behaviours of concern’ – increased impulsivity and irritability, verbal – sometimes physical – aggression – and social-sexual disinhibition are indeed common. Survey work – completed now some 5 years ago – by the NSW Brain Injury Rehabilitation Directorate found over half of both adult and paediatric samples screened positively for such behaviours. (Work carried out by the Transport Accident Commission in Victoria found similar rates.) It also found a positive relationship between the severity of injury and the severity of subsequent behaviours. The behaviours can also worsen over time. Because for around 2 in every 3 people who behave in such ways – especially where insight into the behaviours and their effects is also limited by damage to their brain and they have limited, or no, control over, combined with lack of memory of, them – this is reported by them, their carers, their family members as being the most disabling part of their brain injury…”

Given how disabling the behaviours are for both consumers and family members, given their (frequent) basis in injury, I think what ‘we’ call them matters. I prefer ‘challenging behaviours’ – ‘any behaviour, or lack of behaviour of such intensity, frequency and/or duration that has the potential to cause distress or harm to clients/carers/staff or one which creates feelings of discomfort, powerlessness, frustration, fear or anxiety. It is also behaviour, which delays or limits access to ordinary community facilities and is outside socially acceptable norms’ – over ‘behaviours of concern’ for two reasons (at least/ that I can think of. And I’m thinking. Hard.)

First and foremost, and in contrast to ‘behaviours of concern’, ‘challenging behaviours’ is more ‘person[with a disability]-centred’, places the person with the brain injury in an active, albeit potentially negative, role. Secondly, what constitutes such ‘norms’ and what makes a particular behaviour challenging to them is clearly subjective, circumstantial, contingent (one person’s ‘challenging behaviour’ might be another’s rightful self-expression) and mutable (public breast-feeding, for example). Lifetime Care’s use of ‘challenging behaviours’ would also, I believe, be more in keeping with, if not true to, the social model of disability (the paradigm shift away from the medical model of disability) encapsulated in The United Nations Convention on the Rights of Persons with Disabilities: that disability is the result of the interaction between people living with impairments and barriers in the physical, attitudinal, communication and social environment. For example, it is not the inability to walk that keeps a person from entering a building by themselves but the stairs that are inaccessible that keeps a wheelchair-user from entering that building. Surely, one of the objectives of the work that Lifetime Care is undertaking here is to enhance its understanding, and that of professionals who work with Lifetime Care clients with ‘challenging behaviours’, of the (frequent) neurological basis of such behaviours and, thus, enhance its ‘care’ of clients.

Conversely, ‘behaviours of concern’ sounds like it was coined at the ‘barriers’, above, by those normalising, norm-ing influences that exist to keep such behaviours in check. ‘Concern’ carries the odour of a finger-wagging impulse to respond, perhaps punitively, to such behaviours where –surely – the way the world’s moving is towards ‘positive behaviour supports’ – non-aversive controls, such as making changes in the client’s environment to reduce or remove triggers to such behaviours.

My (further) two cents. Let me know if you need more, something else.

Regards, etc.”

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