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The SCIA Story
Spinal Cord Injuries Australia was established in 1967 by a group of young men who wanted to change the world. These men, who were hospitalised at the time due to spinal cord injuries caused by traumatic accidents, faced a future with just two options: continuing hospitalisation, or relocation to a nursing home designed for older people approaching the end of their lives.
Determined to hold onto the nascent hopes and dreams that had been taking shape during their early years, they set about demanding that they be able to live lives no different from anyone else: lives full of ups and downs, to be sure, but lives in which choices are possible and self determination a reality. To a great extent they have been successful, in that most of them – and many of those who followed – now live in their own homes, with partners, families, jobs, social networks, and active social lives.
Much has changed in the last forty years for people with a spinal cord injury, but much remains to be done. Whilst life expectancy and life choices for people who have experienced traumatic injury have both improved substantially, we still live in a world where necessary equipment and support services for daily living are not available when and where they are needed, where physical, emotional and psychological decline are a constant threat, and where society continues to throw up barriers to full community participation, whether these barriers be physical, financial or attitudinal.
Society seems to be complacent about the fact that the employment participation rate for people with spinal cord injury is half the national average; that they are frightened about what will happen to them if they can’t find sufficient support to maintain an independent life as they age; that trains, buses, taxis and planes are only available to some of the people some of the time; and that many buildings, sporting venues and footpaths are no-go zones for anyone in a wheelchair. All of this persists in an environment where life with a disability is expensive, and due to differing state laws, government financial support for individuals is largely a lottery based on how and where an accident happened.
Spinal Cord Injuries Australia’s main strength lies in the fact that as a member based social enterprise with a majority of people with a disability amongst staff and directors, combined with our accumulated expert knowledge and experience, and the many and varied partnerships we have with other community organisations, corporates, universities and government, we can ensure that all of our actions are both based on real life experience, and produce practical outcomes. We see it as our role to do whatever it takes to assist people to get back on track after a spinal cord injury, so that they can become the masters of their own destiny, rather than recipients of care.
However, the foundations of the organisation’s past success will not be sufficient to take us into the future. The achievements of the past have positively affected many lives, but many people have slipped between the cracks. Too many issues affecting the lives of people with serious physical disability, such as marginalisation, lack of access to meaningful employment, and limited transport choices, have persisted for too long. We need to hold on to the hard-earned lessons and successes from the past, whilst finding new solutions to both old, and new, problems. To do this, we need to focus on three key goals to ensure that the lives and opportunities for people with a spinal cord injury change for the better, so that they are not markedly different to those of the general population:
Raise the profile of both the organisation, and spinal cord injury generally
Spinal cord injury affects around 12,000 Australians. Every week, another six people suffer traumatic injury leading to paralysis. The most obvious physical impacts of spinal cord injury are there for all to see, but there are other, less obvious impacts, including emotional and psychological strain brought on by the sudden overturning of everything that was once taken for granted, financial pressures due to reduced earning capacity and the high cost of living with a disability, and the unnerving experience of encountering discrimination, perhaps for the first time, due to ignorance and deep seated attitudes in the community.
Change for the better will only come about if there is an awareness of the issues that are holding people back from living full and productive lives, and an understanding of the solutions that are available to address this situation. Spinal Cord Injuries Australia has a long history of raising the awareness and profile of spinal cord injury through its publications, campaigns, and various interactions with the community and government; this will continue in new and innovative ways in the future, until the job is done.
Advocate for the rights and entitlements of people with a disability
Whilst awareness is important, it is not enough. Spinal Cord Injuries Australia was built on foundations of advocating for the rights of people with a disability, with considerable success. This journey continues. However, whilst we continue to live in a world where the suicide rate for people with spinal cord injury is five times the national average, the employment participation rate is half the general population, the rate of breakdown in close personal relationships exceeds 80%, and a significant number of people experience daily isolation and depression, we have not achieved all we can.
As a member based organisation, we provide a voice on behalf of all those who would otherwise not be heard by government, organisations, and the community at large. Each year, we assist hundreds of people who have experienced discrimination or been disadvantaged by someone else’s decisions or actions, and who have reached a point where they are ready to give up. In addition, we have worked behind the scenes to influence a great deal of government policy, and have made submissions to a wide range of public inquiries where issues of concern to our members are being considered. We will continue to take every opportunity to advance the interests of our members in these and many other ways.
Introduce innovative services to address unmet needs
In many cases, people with a disability are left without the services and equipment that are necessary to enable full participation in social, economic and family life. Many charities in Australia operate from a scarcity mentality, leading to negative perceptions about their capacity to address longstanding problems, and sub optimal outcomes for their stakeholders. However, Spinal Cord Injuries Australia is motivated by a passion to solve the problems facing our members, no matter how intractable they may seem. In the words of Muhammad Yunus (founder of Grameen Bank): “Whatever the problem is, you can create a social business to solve it. You have a choice - if there is a problem, you can grumble about it, or you can complain to the government to do something about it, or you can start a social business and deal with it.” This philosophy informs everything we do. Our goals are far reaching, but achievable. Over recent years we have laid the foundations for our current and future success. However, to achieve all of our goals, we will need to invest further in:
- Developing our organisational capacity: we need to further develop our people, processes and systems to unleash all of our potential, and ensure we generate maximum impact from the resources we deploy;
- Developing further partnerships with like-minded people and organisations, to ensure that our influence and capability continues to grow;
- Improving our information management and research capability, to ensure we continue to be seen as the “go to” organisation for everything relating to spinal cord injury in Australia;
- Further developing our strong links with government at all levels, and continue to be a key influencer of social policy.
Once we fully leverage our current capabilities, and create new capabilities through these actions, the direct result will be that people with a spinal cord injury will have life experiences and choices much closer to those of the general population, and Spinal Cord Injuries Australia will be seen as the expert organisation within Australia in all matters relating to spinal cord injury.
We already have a proud history, a deep passion, expert knowledge, diverse skills and experience, and the support of a wide range of individuals, organisations and governments. By focusing our efforts and ensuring we always keep people with a spinal cord injury at the centre of all our plans, we can continue to break out of the traditional charity model and find solutions to social problems that others have previously seen as immovable barriers. We can be the change we want to see in the world.
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