Putting people with a spinal cord injury (SCI) at the centre of making decisions about their own support took centre stage at the launch of the Australian Spinal Injury Alliance (Spinal Alliance) in early October last year.

The Spinal Alliance represents eight of Australia’s state-based spinal cord injury organisations. It will work with stakeholders, promote the coordination of services and monitor outcomes for people with a SCI. To do this, it will leverage its members’ expertise and existing communities and it will focus on government liaison, advocacy, injury prevention, awareness raising and information sharing.

Members of the Spinal Alliance include Australian Quadriplegic Association Victoria (AQA Victoria), Independence Australia, ParaQuad Association of Tasmania Inc, ParaQuad NSW, PARAQUAD SA, Spinal Cord Injuries Australia, Spinal Injuries Association QLD and Spine & Limb Foundation, WA.

Acclaimed singer Tim McCallum, who has an SCI, helped to kick off the launch. He said the alliance was a great step forward in preparing for the National Disability Insurance Scheme (NDIS) as it would link common practices and help share knowledge and information. “The ease of communication and most of all the willingness to believe that someone’s disability doesn’t change and the services don’t change just because you cross the [state] border… is the most important element as to why this alliance will help improve and enhance the lives of those with a spinal cord injury and assist them in helping them reach their dreams as I have.”

“This alliance will help improve and enhance the lives of those with a spinal cord injury and assist them in helping them reach their dreams.”

Spokesperson for the Spinal Alliance Peter Trethewey agrees. In kicking off the launch, he said despite great improvements in services for people with a SCI, progress had been constrained by the way services were organised and administered. He said pockets of expertise existed and a silo mentality existed between organisations, governments and within academia. Also, access to health care and other services was rationed and information was fragmented, which resulted in poor outcomes for people with a SCI, such as a 50 per cent decline in employment rates pre and post SCI, he added. “This alliance will help improve and enhance the lives of those with a spinal cord injury and assist them in helping them reach their dreams.”

The Spinal Alliance aims to change this situation by working with people with a SCI to make the most of the NDIS. Peter says the NDIS has the potential to transform access to care and support because the key principle is to put the person at the centre of identifying and managing their own needs – where funded support is seen as an investment and measured outcomes include those that matter to the individual.

Senator Mitch Fifield, the Federal Assistant Minister for Social Services, sent a video message of support to the launch, saying the Spinal Alliance is a good fit with the NDIS, and it will add a layer of support to help individuals through the new process. Keeping the focus on the person with a SCI at the centre and in control of their supports was a new way of operating for many people with a SCI, and the Spinal Alliance would play an important role in assisting them through this process, he said.

Victorian Parliamentary Secretary for Health Georgie Crozier also attended the launch, adding her support to the Senator’s comments. She described the Spinal Alliance as a platform of the best and the brightest ideas that could be used to help people access education, housing, care and other services through the NDIS.

“We need to investigate further to improve outcomes for people with a SCI. We need to build a stronger evidence base.”

Representing Spinal Cord Injuries Australia (SCIA) on the Spinal Alliance, SCIA CEO Peter Perry said people with a SCI faced significant problems. He pointed to 2012 ABS data showing an unemployment rate as high as 70 per cent for people with a severe disability. This is just the tip of the iceberg, he added. The outcomes for people living with a SCI in Australia fall well short of international best practice. “The Spinal Alliance hopes to find out why this is occurring. We need to investigate further to improve outcomes for people with SCI. We need to build a stronger evidence base. And the formation of the Spinal Alliance is a first step in this process,” he said.

Reinforcing the importance of the alliance, Tim McCallum emphasised that “being connected to the most appropriate spinal care association can have a huge impact on both your physical and mental health well-being. You can’t do it on your own. I wasn’t a spinal specialist the day before [my injury on] February 13th [1999].”

Tim recalled the day of his injury, sharing how as an 18-year-old aspiring actor his dream of becoming the next Hugh Jackman ended after he dived under a wave and “head butted a sandbar”, damaging his C4 vertebra. After first being treated in Royal Perth Hospital, he was then transferred home to the Royal Talbot Hospital in Melbourne. “I immediately saw the difference between the states’ rehabilitation techniques, practices, facilities and financial backings. This was a huge adjustment physically and emotionally.” But both hospitals offered the opportunity to improve and prepare to re-engage with the community, he added.

After ‘graduating’ from rehabilitation, he moved home to Geelong to live with his family. The house was modified and a local care agency provided a team of 10 carers to help him with personal care and day-to-day needs. He said this was another huge adjustment because it meant moving from a structured institutionalised rehabilitation program to trying to have a say about the decisions concerning his own life.

This was where the spinal associations became important. “Thankfully my carer agency, the spinal unit and a new relationship with the then PARAQUAD Victoria were both extremely supportive of my goals and aspirations to rejoin the workforce as a performer and to continue to follow my dreams,” he said. Since then, Tim’s singing has taken him around the world, including an audition with Cirque du Soleil in Canada and recently performing in Italy at the Pavarotti Foundation. He has also shared his knowledge of SCI on the global stage, too. As an example, he had a two-year affiliation with the Canadian Paraplegic Association in Toronto. Now Tim and his wife Melissa have recently moved to Brisbane, making contact with the Spinal Unit at the Princess Alexandra Hospital and the Spinal Injuries Association. Tim and Melissa are also looking at family planning, in which the spinal unit will play an important role.

For Tim and others with a SCI, meeting life goals has required and will continue to require an incredible amount of coordinated support from spinal cord injury organisations, family and friends. This is why the Spinal Alliance is so important – to help make these goals a reality for all people with a SCI. “The time is now. The moment has come,” Tim says.

This story was written by Helen Borger and first published in the spring 2014 edition of Accord. It is reproduced with the permission of Spinal Cord Injuries Australia

 

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