A growing number of Australians with intellectual disability are outliving their parents, who have often been their primary lifelong carers. Critically, many of these ageing parents have not made plans for their child’s future care and housing, creating an urgent need for future planning to ensure continued support.
To address these issues, a multi-stage research project commenced in 2021, featuring people with intellectual disability at the centre of designing and conducting the research.
Flinders University’s Associate Professor Ruth Walker, Dr Irene Belperio and Associate Professor Fiona Rillotta from Disability and Community Inclusion and the Caring Futures Institute, together with colleagues from La Trobe University and the University of Melbourne, received Australian Research Council Linkage Project funding (LP200200326) for a study titled Choosing the Way Forward, which aimed to support people with intellectual disability and their families to plan future housing and living arrangements.
The research sought to build an evidence base that will help adults with intellectual disability and their families to navigate a transition from the family home within the increasingly complex National Disability Insurance Scheme (NDIS) environment.
The project also addressed a gap in evidence-based policy and practice to support planning for housing transitions after parents have died or can no longer care for their child with intellectual disability.
Central to this project was the inclusion of people who will be most affected by this situation in the co-design and delivery of this research. It involved supporting and mentoring a person with lived experience as a paid co-researcher on the project, building their capacity as a researcher and ensuring that the project was informed by experts with lived experience at every stage.
“Research shows that adults with intellectual disabilities tend not to participate in decision-making about where they live,” says Associate Professor Walker. “However, this study highlights the potential to empower people living with disabilities by including them in all processes in future housing planning.”
Conducted in partnership with National Disability Services, Bedford, genU and the South Australian Office for Ageing Well, the Choosing the Way Forward project involved three stages. The first stage explored experiences of leaving the family home through conducting in-depth interviews with 37 participants, including adults with intellectual disability, informal supporters and disability sector professionals.
The second part of the research project examined the housing plans and preferences of adults with intellectual disability still living at home. Interviews with 17 participants and their informal supporters provided a detailed picture of their wishes and concerns.
The final stage involved a series of co-designed workshops that brought together adults with intellectual disability and family supporters to develop practical, evidence-based resources for navigating future housing and care transitions.
The research found that moving out of the family home can bring significant benefits for adults with intellectual disability across many areas of life – but it also highlighted that greater attention is needed to support changes in family relationships during this transition.
To ensure successful transitions, the research found it was critical for adults with intellectual disability to develop skills that helped build and maintain new relationships, together with strong communication between individuals, families and service providers before and after their move into a new home.
For those who are still living at home, future plans varied considerably. Participants described their aspirations to remain in the family home after a parent moved out, purchase their own property, or access Specialist Disability Accommodation. Some wanted to live independently, while others preferred living with a partner or housemates.
People’s housing goals and preferences were shaped by several practical factors: their financial situation; what their local area and neighbours were like, including how easy it was to get transport; their past experiences with short‑term accommodation; the ages and life stages of everyone in the household; and the broader housing policies that influence what options are available.
Through the project’s co-designed workshops, adults with intellectual disability identified a need for short, accessible videos that present the key research findings and practical tips for them to follow. Family supporters identified the need for, and helped co-design, a one-page guide featuring key “road markers” to assist people with intellectual disability and their families to plan and navigate successful transition to new housing and care services.
These resources will be available by the end of the year through the project’s dedicated website, Making the Move. https://makingthemove.au/