“That grey area where no one can help”: The experience of younger people avoiding or leaving residential aged care who are not NDIS participants

Abstract Living in residential aged care (RAC) can have deleterious effects on the health, well‐being and social participation of younger people (<65 years of age). This research examined the barriers and enablers to leaving or avoiding RAC for Australian younger people who are not National Disability Insurance Scheme (NDIS) participants. It reports on the findings from semi‐structured interviews with 16 younger people living in, or at risk of entering RAC and 12 family members. The research revealed that most participants were opposed to younger people living in RAC, and many of those who were already living in RAC were dissatisfied with their lives. However, some in RAC reported feeling satisfied, and expressed fear that their needs would not be met elsewhere. The barriers and enablers to leaving or avoiding RAC related to funding to access services, help to navigate funding and services, and the availability of services in rural and regional areas. To best support younger people, there is a need for increased funding for the services required to live outside RAC, and assistance to navigate funding and services. Initiatives that address hesitancy to move from RAC, and to build capacity to help younger people imagine life outside RAC are required.