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, Specialist Disability Accommodation (SDA) is a range of National Disability Insurance Scheme (NDIS) funded housing designed for people with extreme functional impairment or very high support needs.

Qualitative interviews were conducted with 17 professionals who had expertise in housing and support for people with HD and supplemented by input from a stakeholder reference group. Interview participants were recruited from Australia, the Netherlands, Belgium, Denmark, Switzerland, Scotland, and New Zealand. Interview participants had a variety of backgrounds, including service providers, academics, clinicians (physiotherapists, occupational therapists, psychologists, psychiatrists, neurologists, nurses), social workers and NDIS support coordinators.

There are a number of important considerations for the housing and support needs of people with HD including the young age of people with HD, complexity of symptoms, the need for flexible and responsive support and consideration of family dynamics.

The aim of this research was to explore professional perspectives on the effectiveness of housing and support models for people with HD, including national and international researchers, clinicians, academics and service providers.