The potential impact of brain injury on an individual’s life and their family does not change over time. What does change is the response made by the community and its services, with advancement in knowledge and service development.
Thirty years ago, Brain Injury SA was established to address the inadequacy of services to meet the needs of people living with brain injury. Three decades later, we have an opportunity to reflect and consider what has changed and perhaps more importantly, what has not.
The founders of Brain Injury SA, known initially as the Brain Injury Network of SA, came together through a shared desire to create change. The early strategies of the organisation reflect their focus of the day and the huge gap in needs of the brain injury community being understood by funders and their services; “Inform politicians”, “Representation on key committees… to increase awareness”, “Respond to policy matters which impact BINSA’s membership”, “Heighten community awareness and education”, “Provide information and support to individuals and their families”, …are identified in early documentation.
The collective focus of the early years of this organisation would now firmly sit within our advocacy agenda, but their vision for funding to support service development was embryonic. Interestingly partnerships with Flinders University, with the development of the Community Reentry program with Professor Roger Rees, was a catalyst to drive service development that was tailored to, and understood, acquired brain injury, and we can now reflect on how our partnership with Flinders University continues today with our Allied Health student involvement and the development of our Southern Rewire hub.
The informal network of a group of individuals and their families became Brain Injury SA as we now know it. Following some initial meetings at Julia Farr, the 1992–1993 financial year saw this group formalise, and incorporate as an association, with a successful funding application to employ their first part-time coordinator. Operating largely with volunteer assistance, peer mentors were involved in supporting people through brain injury experience with groups and activities carried out at various locations. At a recent meeting I had with Pam Kirkham, one of the early members of what was known as the Management Committee, she told me they thought of themselves as a network, a means to connect people to each other for support, whilst collectively educating the community and government on the needs and potential of people living with brain injury.
By the end of this 2021–2022 financial year the staff team, rich in both experience and training, reached 47 people or an equivalent of over 38 full time staff employed across our three service hubs. Pam spoke to me more about the early days of the organisation. Her daughter sustained her brain injury from a car accident in 1994 and drew Pamela, her husband and their daughter Airlie into the orbit of what was becoming Brain Injury SA. Airlie’s family recognised the importance of hope in relation to the impact of her brain injury, and the importance of proactive care that was founded on who Airlie was before her accident, a young woman at the start of her career as a teacher, with a passion for music and the creative arts. They could envision a better life than was being offered for Airlie, who had no access to communication after her injury due to “Locked in syndrome”, which allowed her to comprehend everything said to her without any means to respond. At the time, Airlie seemed destined to reside in institutional care with little expectation of doing much at all.
The absence of services to support this vision drove Pamela to campaign for a better deal for her daughter and resulted in years of voluntary contribution to our organisation including many years on the Board of management. Sadly, Airlie died this year, and we commemorate her amazing achievements in the years that followed her brain injury. These included writing and publishing her own memoir and two books of poetry, once the means for her communication was found, and she enjoyed participation in a wide variety of activities and events through the early days of Springboard, which became Rewire in our contemporary organisation. She also participated in the Flinders University Reentry program and was part of the changes in services for people with brain injury that has occurred over the last thirty years in South Australia. It was considered a very progressive initiative at the time, but in recent years the University recognised that the world had progressed in its thinking and new things were now needed.
Brain Injury SA’s 30-year milestone is important. In some ways what was old is new again. Our newly developed Strategic Plan for 2022–25 revisits the importance of involvement of people with lived experience as drivers and contributors to directions taken by the organisation with work on a co-designed Disability Access and Inclusion Plan, and our year has ended with new funding for a Peer Mentor program. We also continue to work to develop more services for families and carers and have been pleased to complete the first delivery of the well-researched SAHMRI “Be Well” program for carers this year.
We currently work with over 350 people through the programs we deliver and aspire to reach more people who need our services through growth and service development. We know that improved community education and understanding remains very important to people living with brain injury as it was in those early days, and ensuring government recognises their potential is vital to maximize their opportunity and community access and to support them live their best lives. Funding for services will never be sufficient, but the organisation’s transition to take up the opportunities brought by the NDIS and the increasing awareness of brain injury in the community show the importance of the vision of the early founders.
I would like to, in particular, acknowledge Dawn Brooks, the inaugural Executive Officer and her early advocacy work and pioneering service development. In our 2021–22 Annual Report I would like to thank them for helping us reach this year, and recognise the importance to visualise, plan and deliver service growth and advocacy for the next thirty years, whilst sharing our current work and direction.
Happy 30th Birthday BISA!
Liz Forsyth
Chief Executive Officer
