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Summer Foundation report on effective housing and support models

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.

Latest News and Stories

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We are recruiting – Youth Services Practitioner

Published date: 20 March, 2023

Huntington’s NSW ACT provides services and advocacy to improve the lives of people impacted by Huntington’s disease (HD). The HD Youth Services Practitioner supports achievement of Huntington’s NSW ACT’s strategic objectives by providing counselling and other tools to improve the mental health of children and young people at risk of Huntington’s disease, and/or living with a parent or carer, or family member affected by or at risk of developing HD.

Ailsa’s Legacy – HD Education Scholarship

Published date: 17 March, 2023

We are excited to announce that applications for the 2023 Ailsa’s Legacy Youth Scholarships are now open and invite all children and young people in our HD community needing assistance to start, continue, or return to education in 2023 to apply. We have a number of individual grants available this year of up to $2000 each for children and young people living with an HD affected parent or carer. These grants can be spent on anything that makes accessing education easier and more likely such as course or school fees, uniforms and shoes, computers, IT and software, school camps, school sports, extra tuition, extracurricular activities, transport, accommodation, and more.
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NAA pre-budget submission for the 2023-24 Federal Budget

Published date: 6 March, 2023

The Neurological Alliance Australia * (NAA) is pleased to provide a pre-Budget submission to the Australian Government for the 2023-2024 Budget. This submission focusses on four key areas that will impact people affected by the conditions represented by the members of the NAA.

HD Heroes book release

Published date: 6 March, 2023

Huntington’s Disease Heroes includes stories from a scientist who switched from cancer research to studying Huntington’s after finding out her mother had tested positive for the disease, a young man whose biggest fear was testing gene negative and not inheriting the disease, and a woman who grew up in survival mode, unable to express her grief. We learn about the ways their lives are better off because of the hardships they have faced. By sharing these intimate parts of their lives, they are taking away the fear and stigma of living with Huntington’s in their families. They are giving a voice to this unheard rare disease community and empowering others to speak up.
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We are recruiting – Support Services Administrator

Published date: 2 February, 2023

We have created a new position for an enthusiastic and committed person wanting to be part of an inclusive and supportive team in a growing NDIS specialist business and specialised programs, supporting people living with Huntington’s disease (HD) and their families. In this part-time role you will be responsible for providing administration support to a ... Read more

CEO announcement for Huntington’s Australia

Published date: 16 January, 2023

Following the recent announcement about State Association memberships agreeing to proceed with a national merger, Huntington’s Australia (HA) has appointed a new CEO to lead the new association. Lenni Duffield, from Huntington’s WA, has been unanimously endorsed by the HA Board as the inaugural CEO of Huntington’s Australia. Lenni has held senior roles and provided ... Read more