Home and away: What do we do well in Australia, and what can we learn from overseas?

Abstract

What do we do well in Australia, and what can we learn from overseas? I was fortunate to be awarded a 2012 Churchill Fellowship to explore the provision of end-of-life care for people with intellectual disability. This facilitated my travel to the United States, United Kingdom and Ireland between June and August 2013 to interview academics, government representatives and community-based service providers. A specific focus was on gaining a better understanding of overseas practices may be appropriately replicable within Australia. In conjunction with researchers from the University of Sydney and University of New England, two separate projects have been conducted across New South Wales and Queensland in 2014 and 2015 to extend upon the knowledge gained from the Churchill Fellowship. A quantitative survey tool, based upon the VOICES project from the University of Southampton, complemented a series of qualitative focus groups, with both pieces of research undertaken with support staff providing end-of-life care for people with intellectual disability. This presentation will report upon the key findings of the Churchill study tour, and preliminary findings from the follow-up research. Specific reference to the differing needs of rural and metropolitan individuals will be discussed, along with recommendations for Australian-based disability support services in terms of changes to daily practice to better support individuals during their end-of-life.