Huntington’s Victoria was invited to attend the conference “Shaping the Future Today” held in August 2008 on the issue of young people in nursing homes.

This is such an important issue nationally that we were joined by Ann Jones, the then Chair of AHDA National, and representatives from the South Australian and Queensland Huntington’s Associations.

Discussion forums were used to identify the key issues that the people attending wanted to raise. Huntington’s examples were mentioned in many of the discussions, including the presentation by Minister Jenny Macklin. Bill Shorten and Jenny Macklin from the Federal Government spoke about their plans to develop a National Disability Strategy, which will review all of the current benefits and pensions, accommodation and opportunities for disabled people and introduce a more flexible system for users

» View more information about the conference

The 2005 report on the Parliamentary inquiry into aged care found that “young people with disabilities are still accommodated in residential aged care facilities and the number has been increasing over the last decade. …Some people with degenerative conditions, such as Huntington's Disease, may require complex medical care for ten or more years.”

» View the report in the Inquiry website

The Young People In Nursing Homes National Alliance is a national organisation that promotes the rights of young disabled Australians with high and complex support needs living in residential aged care facilities (or at risk of placement there), to have choice about where they live and how they are supported.
See www.ypinh.org.au