In July 2008 Huntington’s Victoria made two submissions on behalf of the Huntington’s Community to the Federal Parliamentary Inquiry into Better Support for Carers.

These submissions were prepared with the helpof the Carers Support Group and the Community Advisory Committee (CAC), who used their regular meetings to discuss the issues and develop recommendations.

» Read our submissions on the Inquiry website

As a result of our submissions, we were one of a few organisations invited to make a personal presentation to the Committee to discuss our recommendations in more detail.

Sue Gambin, a carer and member of the CAC, together with Ruth Hertan, Huntington's Victoria CEO,  went to Parliament House in Melbourne on 12 August 2008 to present before the Committee. Each presentation was limited to thirty minutes, with a five minute introduction by the presenters, followed by questions from the Committee. Sue opened the presentation with a summary of her fifteen years as a carer. This had an enormous emotional impact on those present, despite the stories the Committee had heard from many other carers.

The Committee discussed the lack of support for children in families affected by HD and were interested in the kind of program that might better support those young people who are facing their own challenges.

The Committee was particularly interested in our recommendation to establish a specialist neurological contact team at Centrelink which can be accessed to support people with degenerative neurological conditions to better navigate the system.  They also wanted further details on what a model of care would look like for people with younger onset dementias.

» Read the transcript of our presentation

The Inquiry is expected to report in early 2009 and we await the report with great interest.

Thank you to the members of the Huntington’s Support Group, the CAC and particularly Sue Gambin, for giving your time and thoughts to addressing these important issues.