“They treat you like a person, they ask you what you want.”
That is what quality paid disability support looks like according to new research by the Summer Foundation and La Trobe University.
Summer Foundation research assistant and final year PhD student Megan Topping interviewed 12 people with acquired neurological disability about the factors that influence the quality of paid disability support.
The main theme to come from the interviews was that quality support meant the participants were treated as people, not jobs.
“You would think that’s quite obvious and it’s quite sad that it’s something people feel they have to point out,” Megan said. “But some people felt they were treated by support workers as just a job or a number, a patient or at the worst end of the scale, someone said they felt like they were just a body in a bed.”
The other outstanding theme from the research was that support workers should listen to the person they are supporting as the expert in their own care.
Overall, the research found people want:
- To be recognised as individuals and the experts in their own needs
- A good relationship with their support worker
- To have choice about who supports them
- To feel in control of their support arrangements
In Australia, at least 5% of people have a cognitive impairment due to developmental or neurological disability and are likely to need support to live and participate in the community.
The role of support workers is complex but there are limited training opportunities for them. The lack of support worker training is compounded by the lack of clarity about what quality support looks like in practice. The research aims to help address this.
Read more about the research in an article by Megan and Professor Jacinta Douglas in The Conversation or listen to the 19 September Reasonable and Necessary podcast.
More information about the study is also available in our Research Library.