Understanding the disparate and diverse needs for people living with ABI

According to estimates by the Australian Institute of Health and Welfare 1 in 45 Australian have an acquired brain injury (ABI).  We had the chance to speak to Nick Rushworth, Brain Injury Australia’s Executive Officer about the biggest challenges for patients, family and carers, some common misconceptions about people with ABI, the current support framework in Australia and the challenges of achieving greater community awareness.

IIR Healthcare: Coping with an ABI is difficult for the patient, family and carers. In your experience, what impacts on the patient, family and carers the most?

Nick Rushworth: One thing that the general public is largely unaware of is that people living with ABI are a very disparate and diverse group of people. That’s why it is very difficult to make a general statement on what has the biggest impact on the patient, family and carers. While the traditional focus of disability advocacy and awareness-raising has been the “young TBI” [traumatic brain injury] due to a motor vehicle or workplace accident or an assault, an ABI can be caused by a number of different factors at different stages of a person’s life. This can include a traumatic incident such as an accident or assault but also extends to birth defects caused by a mother’s excessive alcohol consumption during pregnancy.

Another factor determining how ABI impacts on a person’s and their carers’ life is the age at which the ABI occurred. Brain Injury Australia and its State and Territory Member organisations see the entire spectrum; starting from a child whose brain injury might be inflicted by a caregiver to an elderly person who sustains a serious head injury from a fall. Due to an ageing population, the latter experiences the highest rate of traumatic brain injury, not only in Australia but right across the developed world.

We tend to see greater awareness of the impact of ABI on a person’s life around young people who suffer a traumatic brain injury during the prime of their life at the age of 18 – 35 due to a car accident or assault. It is the time when most people set themselves up for life, start out their career and plan further education. A brain injury can undo these plans in just one moment. Even though a lot of people make good physical recovery, often they experience profound behavioural and cognitive disabilities. It impacts and inhibits the ability to learn, plan and solve problems.

IIR Healthcare: What behavioural issues do people with ABI have to deal with?

Nick Rushworth: As many as half of all patients with a moderate to severe ABI exiting rehabilitation will exhibit “challenging behaviours”, sometimes referred to as “behaviours of concern” – such as increased irritability, verbal – sometimes physical – aggression, socially – sometimes sexually – inappropriate behaviour. Many of the surveys of the lived experience of the ABI indicate that, of all the aspects of the disability, these behaviours are reported by consumers and carers as being the most disabling.

IIR Healthcare: How would you rate the current support frameworks in Australia?

Nick Rushworth: One thing that I would criticise about the current hospital and rehabilitation framework is that your access to the best level of care depends very much on where sustain your brain injury. For example, NSW has 14 specialised brain injury rehabilitation centres whereas the Northern Territory really only has one facility that is capable of doing general orthopaedic and post-stroke rehabilitation attached to Darwin hospital. The facility also has to cater for a very diverse range

of injuries which makes it a lot harder to provide the appropriate care for ABI patients. This is even though it has long been proven that team based specialist therapy including physiotherapists, occupational therapists and speech pathologists, trained in ABI produces much better outcomes. Ultimately, this limited access to rehabilitation will also impact the long-term recovery and adaptation process. I believe that in a country as wealthy as Australia everyone should be able to receive the best level of care regardless of which State or Territory you live in and no matter whether you are living in a regional or remote place or in one of the country’s capital cities.

The introduction of DisabilityCare Australia offers the potential to change this. Market mechanisms may lead to new service provider entrants in the long-term. However, it will take at least five years until we see a significant change in the system.

IIR Healthcare: In your speech at the start of the National Brain Injury Awareness Week 2013 you said that “because there are more worthy causes than weeks in the year the awareness raising business is a competitive one.” What are the major challenges working in advocacy for services and support for people with an ABI?

Nick Rushworth: Brain injury is an invisible disability. A lot of people living with an ABI make a full physical recovery which unfortunately means that their cognitive and behavioural disabilities often go unnoticed or unrecognised. People with ABI are frequently wrongly judged in day-to-day situations and at work. Their inability to learn or their fatigue is attributed to them as a person rather than to their disability.

In terms of public awareness, I think that brain injury lags about 20 to 30 years behind in Australia compared to other disabilities. With Brain Injury Australia I am trying to reach a greater level of community awareness for people living with brain injury and how it can affect a person. Only if the community is mindful of brain injury and its consequences, people living with an ABI will feel comfortable enough to talk about their condition without having to be afraid of the reaction they might face.

IIR Healthcare: In July 2013 DisabilityCare Australia was launched and will be rolled out gradually across the states over the next year.  What are the benefits and challenges of the initiative for people with ABI?

Nick Rushworth: DisabilityCare Australia offers a once in a life-time opportunity and federal and state governments should be congratulated on the steps they have taken to come to the agreement.

The only area that I think might have needed a bit more thought is the current lack of enabling infrastructure for people with brain injury and other intellectual and psycho-social disabilities to access the scheme. I just doubt whether everyone with a brain injury is going to be able to readily transform themselves from relatively passive customers of disability services into active retailers of the funding in their personal, goal-based plan. This is precisely why Brain Injury Australia is helping its member organisations prepare to deliver “Plan Management Provider” and “Support Coordination” services under DisabilityCare Australia. These services will help people with a brain injury to develop and to manage their own individualised plan, identify and then choose the right services and support offers that are best qualified to meet their needs. The initiative will start in the DisabilityCare Australia “launch site” in the Hunter Valley of New South Wales.

IIR Healthcare: You will be chairing the National Acquired Brain Injury conference. What discussions would you like to have with attendees at the event?

Nick Rushworth: I hope that people will get a better understanding how disparate and diverse people with ABI are and that their needs differ immensely. There are sessions dealing with Fetal Alcoholic Spectrum Disorder as well as a presentation examining the special needs of people with ABI in the criminal justice system.  Attendees will hopefully walk away from the conference with a better idea of some of the subtleties and complexities of the disability.

More information on the inaugural National Acquired Brain Injury Conference and the full agenda can be viewed on the event website.

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