In a society where life expectancy is on the rise, a significant challenge is emerging for an increasing number of older Australians – those with intellectual disabilities who are outliving their lifelong primary carers. Flinders’ Caring Futures Institute’s Associate Professor Ruth Walker is leading a project, supported by Dr Fiona Rillotta, Dr Claire Hutchinson and Dr Irene Belperio aiming to provide support and guidance to families facing the complex task of planning for the future housing and living arrangements of their loved ones.
A considerable portion of the Australian community comprises older people with intellectual disabilities, many of whom find themselves without a clear plan for ongoing care once their parents, who have traditionally been their primary caregivers, are no longer able to fulfill that role (often referred to as ‘post-parental care’).
Associate Professor Walker’s research specifically focusses on providing evidence to assist families in navigating the complexities of finding suitable and appropriate housing, particularly within the framework of the National Disability Insurance Scheme (NDIS). Additionally, it aims to fill the gap in evidence-based policy, offering a foundation for services that aid in planning for post-parental housing transitions in the disability and aging sectors.
The Choosing the way forward project, funded by an Australian Research Council Linkage Grant and undertaken in collaboration with La Trobe University and University of Melbourne addresses the barriers preventing effective planning, with a particular focus on the availability and standard of alternative housing and support.
The research project, conducted in multiple stages, follows an inclusive approach, and is co-designed alongside individuals with intellectual disabilities and their family members.
Associate Professor Walker stresses, “Inclusive research and co-design are at the core of this project. We aim to ensure that the project is informed by experts with lived experience at every stage. Our key output, evidence-based resources, will be informed by people with intellectual disability and their family members, ensuring that the final product reflects their perspectives and needs.”
In partnership with National Disability Services, Bedford, GenU and the Office for Ageing Well, the project was divided into three stages. The first which is now complete included in-depth interviews with 25 participants nationwide, exploring successful transitions out of the family home. The second stage explores housing preferences for older adults with intellectual disabilities still living at home. Insights from these interviews shape an upcoming survey to gather data from around 200 individuals nationwide. Finally, stage three will leverage the collected data to develop evidence-based resources for decision-making regarding post-parental care and housing.
The intended outcome of the project is clear – the development of evidence-based resources to guide decision-making about post-parental care and housing for adults with intellectual disabilities. Associate Professor Walker’s research is not only addressing a pressing societal issue but also paving the way for a more inclusive and secure future for those with intellectual disabilities and their families.
In her words, “The project’s outcome will advance knowledge and generate a national framework for policy and practice responses, ensuring Australia is at the forefront of addressing the housing needs of this vulnerable population.”