Brain injury: Sharing the benefits of consumer representation

Don’t tell this to the 700,000 Australians living with brain injury, but brain injury is sometimes referred to as an invisible injury.  Although it’s needs are not as obvious as a broken arm or cut, Brain Injury Australia’s Nick Rushworth joins us to discuss the “overwhelming need for accurate and user-friendly information” about the services and supports available to these people, their families and carers.

Nick has been Executive Officer of Brain Injury Australia since 2008. Before joining Brain Injury Australia in 2008, Nick worked for the Northern Territory Government setting up their new Office of Disability and was formerly an award winning journalist. In 1996, Nick sustained a severe traumatic brain injury as a result of a bicycle accident.

How important is consumer representation in addressing brain injury?

I think it’s as crucial as not for any other disability but for any other health and human services end-user population. But I think it’s fair to say that consumer representation for acquired disability is less, say, evolved than for congenital or developmental disability. Perhaps, in part, due to the potential pool of conscripts in brain injury being flat out with just coming to terms with their new life, with picking up as many the pieces of the old as they can. And consumer representation in brain injury is less evolved than in other disabilities – particularly physical and sensory disabilities.

There need be no other reason for this apart from where the “rubber meets the road” in brain injury; cognitive and behavioural disability. As a result, consumer representation in brain injury remains a very small merry-go-round of largely the same faces going up, down, and around the exception rather than the rule in recoveries.

The other problem with the merry-go-round is it mightn’t stop, to take on new riders. Often the last thing to be thought about is the benefit to the consumer of his/ her representation, representativeness. That – akin to the poor uptake of individualised funding by people with a brain injury – engagement with, recruitment of, representative consumers has largely failed to find, let alone flog, its selling points. That, for instance – given that brain injury tracks social-locational disadvantage – consumer representation, with the necessary supports in place, may provide some kind of educational uplift. It could, should perhaps, result in some manner of qualification. If Brain Injury Australia – and like-minded Disabled Person’s Organisations, so called – are true to mission; to optimise the lived experience of disability for all its constituents, the benefits of consumer representation need to be shared around.

What role does Brain Injury Australia (BIA) play in consumer advocacy?

Since its establishment in 1986, Brain Injury Australia has been providing information, support and advocacy to the over 700,000 Australians living with brain injury, their families and carers – to ensure they have access to the supports and resources they need to optimise their social and economic participation. Alongside national-level lobbying work, Brain Injury Australia also drives multi-year public information campaigns devoted to neglected populations: the leading cause of death and disability in children who have been abused – inflicted traumatic brain injury, sometimes referred to as “shaken baby syndrome”; the leading cause of traumatic brain injury across all age groups and external causes – falls, due to the ageing of the population; and people with a brain injury in the criminal justice system – as many as 60 per cent of Australia’s 30,000 adult prisoners screen positively for traumatic brain injury.

The most recent of these campaigns – in partnership with Sports Medicine Australia, and built around Brain Injury Australia’s trademarked “5Rs” of concussion – “Recognise the injury, Removal from play, Referral to a doctor, Rest and then Return to play” – is devoted to the most common cause of mild traumatic brain injury – concussion. I am in the final stages of production of a concussion education video for Australia’s General Practitioners, presented by Dr. Michael Makdissi – a member of the international authority, the “Concussion in Sport Group”, and doctor for the Australian Football League’s 2014 premiership-winning Hawthorn Football Club.

Brain Injury Australia also fields over 300 inquiries by phone and email each year, and is building the infrastructure for a centralised clearinghouse of information and gateway to nationwide referral in all matters brain injury.

Every National ABI conference has commenced with a consumer perspective. Last year we had Will Elrick & Paul Raciborski from The Brain Injury Association of New South Wales share their journey through brain injury, mountaineering & acceptance. Can you tell us a bit about this year’s consumer representative?

Brain Injury Australia sets the “theme” for each year’s national Brain Injury Awareness Week – the third week in August. Brain Injury Awareness Week 2015 (August 17th – 23rd) turns its attentions to a neglected minority of survivors of traumatic brain injury, women – for whom assault is a much more common cause of brain injury than for men.

Of the over 300 women admitted to Australian hospitals each year with an assault-related traumatic brain injury, their spouse or domestic partner was the perpetrator in around 1 in every 3 of cases, compared to 1 in every 50 of the men admitted for the same reason. In Australia, 1 woman is killed by her current or former partner every week. What happens to those who survive?

This year’s National Acquired Brain Injury Conference, like the two before it, gives pride of place in the program to the lived experience of the disability. And delegates will have the privilege of hearing Rebecca Sciroli who, at age 25, was brutally bashed by her stepfather with a hammer. Now a successful artist and art therapist, just one of the many extraordinary aspects of her phenomenal recovery is that she has forgiven, and reached out to, her attacker.

Earlier this year, you hosted a successful national forum with the CEO of the National Disability Insurance Agency, David Bowen. The Q&A session that followed highlighted a number of concerns over the possible gaps in service provision for people with ABI under the NDIS scheme. What do you think were some of key takeaways from this forum?

What came through loud and clear to me, particularly from the consumers and family members that were there – and this was repeated at a recent consultation on “quality and safeguards” around the National Disability Insurance Scheme that Brain Injury Australia facilitated in the Hunter “trial site” – was the overwhelming need for accurate and user-friendly information about the services and supports available to people with a brain injury, importantly information that was genuinely independent of both government and service provision.

It closely relates, I reckon, to the elephant that was in the room on the day; the notoriously poor uptake of individualised funding – whether self-managed or otherwise – by people with a brain injury. (The last time the National Disability Insurance Agency gave me with disaggregated data on participants – as at August 2014 – only 200, out of around 4,000 plans, were with people with a brain injury.)

Many people with a brain injury will be able to navigate the new world of the National Disability Insurance Scheme as easily as the disability services system of old. But some will not. Specifically, I suspect that not everyone with a brain injury – given their cognitive-behavioural disability – is going to be able to readily transform themselves from relatively passive customers of disability services into active retailers of the funding in their “plan”. Without an enabling infrastructure to do so. Brain Injury Australia is building that infrastructure.

Also, I suspect that the architects of the National Disability Insurance Scheme have assumed that a “choice and control”, broadly human rights, “packaging” – that this here will be “good for you” – will be good enough to sell them. I rate it a failure of the imagination, at least, at best. Both a general one in regards to life circumstances particular to acquired disability, but also one specific to brain injury; in that it fails to answer the question – a question arising out of rightful self-interest, not a pathological egocentricity – namely; “what’s in it for me?”

Nick Rushworth will be chairing the first day of the National Acquired Brain Injury Conference in Melbourne in Melboure on the 13-14 August 2015.

Visit this link to find out more about Brain Injury Australia