Lived experiences of seeking support for rural and remote children with developmental challenges: white paper

Introduction: Current estimates from Australian Early Development Census (AEDC) data suggest that approximately 22% of children in Australia are developmentally challenged on one or more developmental domains as they begin school.1Children in rural and remote areas are more likely than their city-based peers to experience mental health problems, and to be unable to access the health services they need. These difficulties are likely to be compounded by the poorer social determinants of health – such as education, employment and income – frequently experienced by those living in rural and remote communities.2Known difficulties of seeking support for rural and remote children with developmental challenges include: long waiting times for assessment, diagnosis and treatment; a lack of appropriate services in their community; the costs of privately provided services; and of travelling to access those services.3 While numbers such as these have been in the public domain for some years, far less visible are the stories of children and their families who make up the numbers.The purpose of this White Paper is to share the lived experiences of families and service providers involved in seeking support for rural and remote children with developmental challenges. The stories provided through these accounts are matched with recommendations for changes to policy and practice that respond to the needs raised.1 AEDC, 2018 2 Barclay, Phillips and Lyle, 2018The stories were sought through a research project conducted by Charles Sturt University in partnership with Royal Far West. Ethical approval for the research was granted by Charles Sturt University, and prior to consenting to take part, all participants were provided with clear information on the purpose of the project, the voluntary nature of participation and ways in which the information would be used. Seven in-depth interviews were conducted with participants, and additional material was gathered through Royal Far West’s series of public town hall meetings, held in regional towns in New South Wales during 2017 and 2018. Participants included non-Indigenous and Indigenous family members, and service providers such as allied health practitioners, family support and mental health workers and educators from the early childhood and school sectors. To maintain participants’ privacy, no identifying names or locations are given alongside the accounts shared in this paper.There are four sections to this paper. •Section 1 addresses experiences of identifying children’s developmental challenges•Section 2 addresses experiences of assessment and diagnosis•Section 3 addresses difficulties relating to ongoing access to the right services•Section 4 addresses systemic gaps and problems, and their impact for those seeking support for children with developmental challenges.There is a brief summary of main findings at the end of each section.