Principles of disability support in rural and remote Australia: Lessons from parents and carers.

Abstract

This study describes the understanding, experiences and expectations of families living in rural and remote Australia regarding core concepts relating to disability service provision, including person-centred practice (PCP), family-centred practice (FCP), transdisciplinary practice (TDP), choice, control, inclusion, and equity. Thirteen parents or carers, each with a child with an intellectual disability aged between 6 and 16years, living in rural and remote areas as described by the Australian Standard Geographical Classification - Remoteness Area (ASGC-RA) and Modified Monash Model (MMM) - were recruited through distribution of flyers (hard copies or by email) to clinicians, schools, and advocacy agencies. Semi-structured interviews were conducted with participants either in-person or via telephone between July and October 2015. Data were analysed using thematic analysis. Participants reported that their understanding of many of the disability principles (PCP, FCP, choice, control, inclusion, and equity) was different from providers, and that many providers struggled to understand families, and therefore they did not share meaning of the principles of best practice disability supports. Families did not identify transdisciplinary practice as a core issue or tenet of effective service delivery. Families also reported experiences of missing out on services, feeling a sense of isolation in their communities, struggling to access skilled therapists, and difficulty finding supports and goals that were relevant to their child. The quality of supports that these families accessed was often below the standard that they expected. They did not expect that support standards will change in rural and remote Australia, so many have very low expectations of the National Disability Insurance Scheme (NDIS) in the future. Although more data will need to be collected as the NDIS and its markets mature, these data show that many rural and remote participants and their supporters have a variety of concerns about how they will access quality allied health services through the Scheme.