Stronger support for people with brain injury

Families living with an acquired brain injury in South Australia are finding solace in a new peer support network developed by researchers from Flinders University.

Funded by the Julia Farr MS McLeod Benevolent Fund, the Families4Families ABI Peer Support Networkis an 18-month pilot program for adults with acquired brain injuries and their families.

The program aims to connect families affected by acquired brain injuries and give them the opportunity to share their experiences, positive coping strategies, adaption skills and understanding of systems while also broadening their social networks.

Figures shows acquired brain injury (ABI) is a significant cause of disability in South Australia, with about 31,000 people living with an ABI in the state and 4,000 new cases per year.

Families4Families ABI Peer Support Network project manager Dr Jennifer Farnden (pictured) said the network – which has now grown to 200-plus families across seven support groups SA-wide – provides both practical and emotional support through regular group meetings, social and recreational activities, online and phone support.

“We don’t just sit around a circle for morning tea and talk about our history, although we do that too, it’s also about giving people the chance to learn about how the system works and how they can better access the services they need,” Dr Farnden said.

We cover a range of topics in our meetings, from what an ABI actually is and what happens when you have one to changes in disability funding and what forms to fill out – it’s very practical as well as emotionally supportive.”

The network was established earlier this year following a study led by Dr Michelle Bellon from Flinders Disability and Community Inclusion Unit into the needs of families with ABI, which was initiated by Dr Farnden based on her personal experiences as a carer.

Of the 271 respondents who participated in the survey and five focus groups in 2012, the overwhelming majority indicated they wanted more support for the entire family.

“When my husband acquired a brain injury five years ago through a motor vehicle accident I was struck by the fact there were no support groups in the state – I found it very difficult to get support for myself as a carer and for my children,” Dr Farnden said.

“On the off chance I did meet other carers experiencing ABI I found it really helpful so I started looking into it and that’s when we began the study at Flinders University.

“The biggest thing to come out of the research was that like myself, people wanted more emotional support for their partners, children and wider family.

“While there is a peak body representing ABI, it tends to focus more on systemic issues and supporting professionals so it would be great to have something like the Families4Families network permanently in place to support the people who live with ABI day in, day out.”

 Read more Flinders disability-related news: Epilepsy discrimination still rife, Flinders helps build high-tech assistive housing, Social media for rural teens with disability.

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2 thoughts on “Stronger support for people with brain injury

  1. I have an ABI.
    When I first moved to SA, in 2009, I found a brochure in Adelaide Metro for the Brain Injury Network SA (BINSA). While I am too able bodied to be a participant in the programs that BINSA offered, I joined as a volunteer and found the program to be equally rewarding.
    I was then a member of Arts Access SA for a period of time (an NGO that promotes Arts and disability).
    While both organizations are incredibly different in the services they officially provide (BINSA is targeted at Rehab, AASA is geared towards making the Arts accessible), both groups offered provided social support in a “disability friendly” environment, to people with disabilities and their families … we didn’t see much of peoples medical files …

    I then worked for several years with a DEN provider (Disability Employment Network), so saw how hard it was for people with disabilities to deal with the hoops and hurdles involved in trying to gain government assistance (and I saw the people who knew how to work the system so that they were in receipt of these supports when there were other far more deserving people who required them).

    After reading the article “Stronger Support For People With Brain Injury” my comments are this: the social supports for people with severe ABI are there. The assistance with government services are there. The one thing that is lacking is the facilitator, especially for people with mild ABI, who are often overlooked.

    If you are able to meet the aims that you have set out to do, and provide social support, facilitation, and assistance with government services, then you will be doing the disability sector justice. My concern though is that Families4Families was to remain permanent, one day, funding (be it private or government), will require you to meet KPO’s and that will mean you will have to shift your goal posts … and that would be a shame. I hope it never comes to that.

    I will also say that (and you are probably well aware of this already) promotion of your services is crucial. I was lucky that I stumbled on AASA and BINSA. Even though they contribute so much to the disability sector, I had no idea they existed. Same with DEN. So promote yourselves EVERYWHERE you can, not just via professionals.

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