We asked the Summer Foundation if they would investigate effective housing and support models for people with Huntington’s disease. Below is a summary of their findings and links to their reports. We are very grateful for all of the time and effort that the team at Summer Foundation put into this investigation and would like to express our sincere thank you. It is also important to acknowledge all of the professionals and individuals who agreed to be a part of the investigation.
People with Huntington’s disease require high levels of specialised care in order for them to manage daily living tasks. Specialised housing for people with Huntington’s disease in Australia is limited. This is in part due to a lack of funding and in part due to a lack of appropriate facilities. For many people, this means that their only option is to live in residential aged care (RAC). Living in RAC is generally not appropriate given that the environment often has a lack of age-appropriate activities, and social interaction.
It is important to understand how NDIS funding can support people for the duration of their lives and avoid admission to RAC. In the absence of an evidence base, the aim of this project is to explore:
Explore professional perspectives on the effectiveness of housing and support models for people with HD.
Explore housing and support for people with HD from the perspective of close others (i.e., family, friends) of people with HD.