Abstract: Rates of disabling conditions and the proportions of high care needs (PCAR and SCAR) were found to be high within the communities surveyed. Almost half of the survey participants (47%) reported having more than one disability. There were very high rates of physical disabilities recorded in this study, both in analysis of service provider data (77%) and by survey data (57%). This is likely to be at least in part reflective of the high prevalence of MJD in these communities. This study overwhelmingly reinforces the PC findings that there are very limited services available in remote communities above low level attendant care (PC, 2011).There were very limited options for day programs3and no community based overnight care options. One quarter (25%) of carers surveyed reported needing to provide 24/7 care which, with the incidence of profound and severe CARs are considered, points to a clear discrepancy between the services necessary and those currently available. The consequence of this discrepancy is a high reliance on informal carer networks. This is particularly relevant when the profile of carers is considered. Carers were almost always (80%) providing care to multiple people (people with disability and children under age of 15 years). Of those, 39% were providing care for 2 or more people with disability and at least one child. Almost half (46%) of all carers surveyed reported that they had a disability or chronic disease themselves and 77% lived in overcrowded housing. Consistent with other reported findings, understanding and conceptualisation of disability in western medical terms was found to be poor. There is evidence that a lack of awareness of cause and nature of disability has an impact on the capacity of people with disabilities and their carers to advocate for their needs and to engage with services. Amongst those surveyed, it was clear that where targeted information had been provided there was evidence of improved interaction with services, uptake of services and self advocacy.
Massey, Libby, Jane, Angela, Lindop, Nadia, Christian, Ellen, 2013, Disability Audit – NE Arnhem Land/NT Gulf – A Snapshot of Indigenous Australian Disability in the Very Remote Communities of the Groote Eylandt Archipelago (Angurugu, Umbakumba, Milyakburra), Elcho Island (Galiwin’ku), and Ngukurr (including Urapunga), Report, viewed 19 August 2022, https://www.nintione.com.au/?p=15205.