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Legislative Assembly for the ACT: 2003 Week 14 Hansard (9 December) . . Page.. 5053 ..

MR SMYTH (continuing):

possibly one person in this chamber at a given time. The numbers can fool us into thinking it is not a major problem. But it is. It is a condition that affects people in many ways.

Thousands in the ACT have their epilepsy well managed by medication, but for very many others their days are filled with fear, frustration and an inability to manage their condition. And for a small number the condition is totally debilitating. Some kids with epilepsy cannot attend school, and for others employment is out of the question. But for all of them there remains a social stigma still associated with this most misunderstood condition. Indeed, the World Health Organisation has stated that epilepsy remains one of the most misunderstood and under-researched conditions in the world.

The Epilepsy Association has as one of its main aims to dispel the myths associated with this condition. Even today, at the beginning of the 21st century, people are discriminated against. The association has taken a strong educative role to help employers understand that people with epilepsy are still very productive workers. People are still being sacked because they have a seizure in the workplace.

The association told me last week of parents who are still afraid to declare their child's condition to the school for fear of discrimination. The bottom line, Mr Speaker, is that the community and, might I suggest, the community leaders, including most of us, do not understand all they should about this condition. The association wants to change this. They have recently announced an ambitious work program for the next year, a major element of which is a community awareness program.

The government and the ACT health department are their principal funders. They receive over 30 per cent of their total funding as a government core grant, for which they are very grateful. To operate, the association needs about $140,000 per year. Their core grant is about $50,000.

Importantly, the association recognises that the health and wellbeing of the community are not at all the sole responsibility of government. They came to see me, not to ask me to lobby for more dollars but to start the process of community information building. And be warned, they will be coming to see all of you as well. Their work is underpinned by a range of partnerships with other non-profit groups, with local businesses and with the community in general.

The last year has been a very successful year for the association. With their financial situation relatively sound, they have been able to offer some new and exciting services and increase their role in direct counselling and provision of support to people in our community with epilepsy.

The indigenous program received international recognition and was funded by the US-based Pfizer foundation. This work is recognised as being pioneering and other states and territories are looking on with interest to see how they can adopt the learnings. Isn't it great when a small community-based support group can receive international recognition-and even better still when it is one of ours and we support it.

The next year is a vital one for the foundation. To best address the health priorities of the community they must take a major step forward. They tell me that so many people in the

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