An exploration of person-centred allied health supports with rural and remote families in the context of the rollout of the National Disability Insurance Scheme in Australia

Abstract

Australia has recently undergone a revolution in how people with disabilities access funding and choose supports – from supports administered or overseen by state/territory governments, to a national approach where individualised funding is allocated to people based on specific needs under the National Disability Insurance Scheme (NDIS). The power is now in the hands of the person with a disability, which has significant implications for consumers, clinicians and the business models of service providers. In rural and remote Australia, there has long been difficulty in accessing timely, person-centred disability supports and allied health services. Many families have continued to face these difficulties in the leadup to the NDIS transition, and following its implementation across Australia. The research undertaken in this thesis sought to understand family perspectives on past experiences of accessing allied health disability supports, their understanding of the language used to describe and deliver those services, and their expectations for the future given the sweeping changes in legislation and policy. Further, the research sought to use these data to inform at least one kind of solution – a solution which would make timely and person-centred allied health supports possible in rural and remote areas when there is a lack or shortage of existing local clinicians or clinical expertise. The research was carried out in two phases. In Phase 1, qualitative methods (semistructured interviews) were used to collect data from the parents or carers of children with intellectual disabilities in rural and remote Australia. The first study within this phase (Study 1) examined how families have experienced disability supports in the past and how they understood the principles applied in the design of those supports. The second study in this phase (Study 2) collected information regarding the families’ visions for the future. These data informed Phase 2 of the research. In Phase 2, four in-depth mixed methods case studies were carried out to examine the viability of delivering a person-centred allied health service to families in rural and remote Australia via a hybrid online and in person capacity-building approach (Study 3). Families identified a number of issues which affected their past experiences and expectations for the future. The in-depth case studies showed that a hybrid online and in-person capacity-building approach can be effective in some situations, and less effective in others, with one key factor of success including local key-worker support and expertise. With the expansion of digital service delivery models in 2020 as a result of the COVID- 19 pandemic, this research begins to build a foundation for further investigation of capacity-building approaches beyond a traditional one-to-one, in-person-only therapy delivery process. It has the potential to support policy and practice advancement in rural and remote communities across Australia and the world into the future.