Rural disability services: the illusion of choice and control.

Mr Edward Johnson1, Dr Monique Hines2, Prof Michelle Lincoln3

1Faculty of Health Sciences, the University of Sydney, NSW, PO Box 170 Lidcombe NSW 1825, edward.johnson@sydney.edu.au
2Faculty of Health Sciences, the University of Sydney, NSW, PO Box 170 Lidcombe NSW 1825, monique.hines@sydney.edu.au
3Faculty of Health Sciences, the University of Sydney, NSW, PO Box 170 Lidcombe NSW 1825, michelle.lincoln@sydney.edu.au

Background

This paper describes experiences of carers accessing disability services (particularly allied health) for their children with intellectual disability in rural and remote areas. It explores carers’ understanding and experience of family-centred practice (FCP), person-centred practice (PCP), and transdisciplinary practice (TDP). It reveals innovative solutions these parents have used to access services, and shares some of their hopes and expectations for the future, including their views on the NDIS and how they feel that it will work in the bush.

Methods

Semi-structured interviews were conducted with carers and then transcribed verbatim. Thematic analysis and open coding were used to analyse data, where each utterance was coded as a content unit. Content units were grouped to form categories, and categories were grouped to form themes. Data was triangulated through recruiting a broad range of participants, as well as cross-referencing thematic analyses between investigators to ensure agreement on categories and themes.

Results

Salient themes included “timeliness of services”, “giving up”, “schools as support networks”, and “collective parental knowledge”.

Discussion

Individuals in rural and remote areas lack access to clinicians with specialist skills in disability, and there is little competition in the local market. Despite this, many consumers feel obliged to take advantage of the limited choices in their local areas that aren’t always timely or suitable, because the alternative is accessing no services at all. Can telehealth, FIFO, and a more person-centred-place-based approach to services in the bush help to solve these issues? Will the NDIS really bring choice and control?