HD Associations across Australia are banding together to mount an urgent and concerted advocacy campaign to get the Commonwealth to support us to work towards achieving better accommodation outcomes for people with HD and their families.
The recently released final report of the Aged Care Royal Commission has created a unique opportunity for the HD community while the Commonwealth Government is considering its response.
In particular, the recommendation that younger people no longer live in residential aged care (already accepted by the Commonwealth) opens a substantial door for us to advocate for appropriate care for those impacted by HD, their families and the wider HD community.
The Australian Consortium of Huntington's Associations has agreed to mount an urgent and concerted advocacy campaign to get the Commonwealth to support us to work towards the following outcomes:
- Create HD-specific small-scale residential accommodation in all capital cities and regional centres (either in partnership with the disability sector or aged care, but in both cases NDIS-funded) for people with late stage HD (initial focus on
- Create and implement a national education program – the highest need expressed by HD families is for those caring for people with HD to be properly trained and skilled;
- Create a nationally agreed model of care for people with HD which covers the entire journey of people living with HD.
To achieve these outcomes we invite you to a community advocacy meeting where we will highlight the avenues open to you to individually and collectively lobby the State and Federal Governments to have the accommodation needs of the Huntington's community addressed.
Community Advocacy meeting
Date: Wednesday 21st April 2021
Time: 4.30pm to 5.30pm
Venue: The Niche Conference Room
11 Aberdare Road, Nedlands WA 6009
Remember, the more voices we have, the more effective our voice will be.
Please rsvp to: firstname.lastname@example.org
We look forward to seeing you there!