Independence and inclusiveness are CEO’s constant priority

The Spinal Injuries Association’s 50th anniversary year is shaping up to be one of the most significant, and busiest, for its CEO Mark Henley.

2010 will mark Mr Henley’s 22nd year with the not-for-profit organisation, and his 11th year as its CEO. Coincidentally, this year Mr Henley will also celebrate his 50th birthday.

He is equally as ardent about empowering and supporting the Association’s 2,000 Queensland members and clients as the day he started at the organisation as an accountant.

“Since the first meeting of our organisation on 9 March 1960, the overarching aim and values base of our Association has been to enhance the lives of people with a spinal cord injury,” Mr Henley said.

“We have always encouraged independence, supported each individual’s needs and advocated for appropriate support.

“For many years now we have not focused on group homes or group buses.

“Every member of our Association has the right to live independently in their own home and participate in their community. That’s our objective for everything that we do here.”

With 90 staff between its Brisbane and Townsville offices, as well as around 600 Personal Support Workers in most regions throughout Queensland, Mr Henley said the Association provided support for members from when they were newly-injured patients at the state’s only Spinal Injuries Unit in Brisbane, through to their transition to home and work, and for the rest of their lives.

Mr Henley sees the half-century milestone as an opportunity to reflect on the achievements of the Association and to plan an even stronger foundation for assisting people with a spinal cord injury.

“There are certainly much higher expectations of us now – from clients, the community, government and board – as to how we operate,” he said.

“We say we’re running a business – and we are. Anyone who thinks they’re coming to work for a not-for profit because it’s a cushy environment, doesn’t last long.”

As well as the day-to-day intricacies of overseeing such a large not-for-profit, Mr Henley is also a member of multiple advocacy groups including Blue Skies, made up of like-minded people working in the disability sector who are advocating for an inclusive community welcoming of all people; the Disability Alliance, a network of Queenslanders campaigning for better supports, services and funding from government; and the G8 group, which has representatives from eight large disability service providers in Queensland who are lobbying for more appropriate support levels from government.

Mr Henley said the next 18 months would be particularly significant for the disability sector after Prime Minister Kevin Rudd’s November announcement that a feasibility study into a National Disability Insurance Scheme (NDIS) would be conducted.

The results of the study will be delivered in July 2011, with its findings potentially affecting millions of Australians with a disability and those supporting them. The proposed scheme means all people with a severe disability will receive funding and support for a lifetime.

“This funding should go beyond providing the desperately-needed financial support for people with a disability and their families, and create the inclusive community the sector is striving towards,” he said.

During Mr Henley’s 22 year tenure there have been many highlights, particularly the introduction of the Spinal Cord Injury Response (SCIR) program, which supports transition from the Spinal Injuries Unit with personal supports, equipment and housing support.

“Also, being able to offer our Spinal Education Awareness Team (SEAT) injury prevention program free to all Queensland primary and secondary schools is another immense achievement,” he said.

“In the past 23 years since SEAT began, our presenters, who either have quadriplegia or paraplegia, have shared their experience and safety messages with more than 1.3 million Queensland school children.

“Coinciding with the success of our program, in the past 10 years Queensland has gone from having the highest incidence of spinal cord injuries in Australia, to now having the second lowest rate.”

Despite the growing awareness of how easy it is to sustain permanent paralysis, 90 Queenslanders a year are still sustaining spinal cord injuries – a terrible average of one person every four days.

“It’s not only the physical loss, but the financial and emotional strain on people sustaining these types of injuries, and their families, is enormous,” Mr Henley said.

“The annual cost to the community for 90 people with a spinal cord injury to be hospitalised and then return home is more than $26.5 million. And when you consider that around 500 Australians a year sustain a spinal cord injury, that’s more than one billion dollars to the community.”

However, while the consequences of this type of injury are devastating, Mr Henley said the Association always strived to support and encourage members as they focus on their abilities, and not their disability.

“We want our members to be independently able to access every aspect of life and contribute to the community and their region,” he said.

“We don’t make decisions for people, we make sure they have a choice and the right to make that choice.

“Our focus is always going to be around inclusive communities.”

Issued 25 February.