Mike Symon (Deakin, Australian Labor Party) Share this | Link to this | Hansard source

May 26th marked the third World Multiple Sclerosis Day. I commend the work of MS Australia and MS organisations around the world for raising the profile of this disease that affects more than 20,000 Australians.

I also commend the member for Chisholm for her motion to mark this day, which she brought to the House on Monday, 30 May. Due to the popularity of that motion, I was unable to secure a speaking spot at the time, so do so in this adjournment debate today.

The global theme for World MS Day 2011 is employment. Staying at work is a key concern for people diagnosed with MS, as they are likely to be diagnosed in their early adult years, a vital time for establishing a career and starting a family.

The headquarters of MS Australia is at The Nerve Centre in Blackburn, which is in my electorate of Deakin. The locality of the organisation has assisted me to foster an excellent relationship with the many dedicated people who work there. I frequently meet with Alan Blackwood and Robert Pask. Robert Pask is a MS sufferer himself and is known to many people in this House.

Michael Danby (Melbourne Ports, Australian Labor Party) Share this | Link to this | Hansard source

He's a good guy.

Mike Symon (Deakin, Australian Labor Party) Share this | Link to this | Hansard source

He is a very good guy. It is great to have that sort of local contact. It certainly gives you a greater understanding of what so many of those people are up against. Volunteers, staff and the chief operating officer, Robyn Hunter, do so much hard work there.

Much of the work done by MS Australia addresses employment issues that face people with MS and their families. The employment story of MS sufferers in Australia is not a smooth one. The Australian MS Longitudinal Study has conducted two large sample, nationwide surveys of the economic impact of multiple sclerosis in Australia. The first was performed in 2003 and showed that the financial cost of MS was over $600 million annually. The second study was conducted in 2007. In the four-year period between the two studies, there was a pattern of Australians with MS losing their employment. A total of 80 per cent of survey participants with MS had lost their employment within 10 years of diagnosis and were no longer in the paid workforce.

MS, like many other chronic diseases, is costly. The Victorian Chronic Illness Alliance found that, in 2006, some people with MS can spend up to 20 per cent of their income on health costs. That means that staying at work becomes not just a dignity issue but integral to help meet the costs that come with managing this lifelong disease.

On 17 February 2009, The Nerve Centre in Blackburn hosted a disability employment roundtable. The then federal Minister for Employment Participation, as well as key stakeholders in disability employment, including MS Australia, BrainLink, employer and employee representatives, got together at a roundtable and talked over these issues. It was a pretty good and valuable experience for the people who attended.

The conversation we had there that day fed into the government's deliberations, especially on the national disability employment strategy. From that, I can tell the House that the Labor government is listening and has acted by putting employment supports in place through Job Services Australia.

The Disability Employment Services program was uncapped in 2009, providing services for those who need them. The job-in-jeopardy provisions of the program were improved and the Workplace Modification Scheme continues to provide essential equipment and modifications to support people with a disability at work. Many people with MS have taken advantage of these services and MS Australia operate a specialist neurological employment service in Victoria that currently works with over 100 people with MS. On 29 July last year I had the privilege of hosting the Prime Minister, the Minister for Families, Housing, Community Services and Indigenous Affairs and the then Parliament Secretary for Disabilities and Children's Services at MS Australia's headquarters in their centre at Blackburn. That was a particularly important day because on that day the National Disability Strategy was announced outlining a 10-year national plan to improve the lives of people with a disability, promote participation and create a more inclusive society. The Gillard government wants people with disabilities to have the same opportunities as other Australians: access to education, work and community facilities. I am sure we would all agree that that is integral to the aim.

All of us should celebrate the great achievements of MS organisations all over the world and particularly MS Australia. But we should acknowledge that all the work that has been done, which is fantastic in itself, is merely a start. We should not forget the ongoing research and hard work ahead needed to eradicate this debilitating disease.