Huntington’s disease (HD) is a genetic neurodegenerative disease that affects global executive functioning and includes cognitive, physical and psychiatric symptoms. Housing and support needs of people with HD change as the disease progresses. In Australia, people with HD often end up living in residential aged care (RAC) facilities, even when aged under 65 years.

Qualitative interviews were conducted with 11 close others of people with HD in Australia who represented 16 people with HD.

Four overarching themes related to effective housing and support models were identified:

1. Experiences with housing and support models
2. Experience with NDIS and NDIS-funded supports
3. Key elements of housing and support requirements for people with HD
4. The role of advocacy

Overall, participants described a lack of choice and availability of appropriate residences that could house the individual with HD for the duration of their disease. Those who lived in RAC experienced isolation, poor levels of care and sometimes injury through a lack of available specialist support. Participants described the importance of HD expertise in health and disability support teams, long delays and a lack of expertise in the NDIS and disability sectors and a need for a system that is fit for purpose for people with HD to live in housing that meets their needs and preferences.