For people with disability, being included in the community means far more than simply ensuring they are not under threat. To enjoy fulfilling lives, these people need a sense of belonging and having power over their decisions to feel completely safe and secure in their homes.
Sadly, such fulfilment is lacking, and assessing this disparity has been the focus of research by Flinders University PhD candidate Natalie Parmenter as she examined how people with intellectual disability understand and enact their right to feel and be safe in supported accommodation.
Her research revealed what is important to people with intellectual disability regarding their sense of personal safety. Having previously supported people with disability in respite care and in their homes, Natalie says she came to the research with a sense of understanding, but has been surprised by many outcomes that were revealed once she gained the confidence of people she interviewed.
By taking careful time to interview people with disability in their homes, Natalie was able to draw out specific details that have not previously been highlighted in research that tends to focus on averting safety threats rather that aim to define optimal quality of life.
“We have to ensure that the voices of people with disability are elevated and placed at centre stage,” says Natalie, “because we have to learn from them what will make their lives better.”
Natalie’s research involved a three-step discussion and interview process in shared housing that provides accommodation and support to people with disability. She would start with a group discussion about the aims of her research project, to build an understanding of what compromises personal safety. “We had to move beyond the physical to more interpersonal aspects of what defined their safety – not just being aware of safety procedures, such as participating in a fire drill, but what compromised their sense of wellbeing,” Natalie explains.
“When I followed up and conducted interviews with people individually, they elaborated about what personal safety means to them – and they illustrated this by identifying many specific examples of what didn’t make them feel safe. Much of this came as a surprise to me. They explained that even if they felt physically safe, they often felt psychologically or emotionally unsafe if they were being ignored or disrespected by people who care for them.”
Through such findings, Natalie’s research identifies many aspects of what is required for people with intellectual disability to feel safe in supported accommodation. “These are complex shared living arrangements, and often residents don’t get choices about who they get placed with. If the personality matches aren’t right, they felt very lonely, even though there could be others around them in their home.
“It became clear that people with disability want more decision-making power about who comes to live with them. Being able to live with people they could easily relate to gave them a sense of belonging – and this was very important to them, although it seemed this was rarely something that was considered by carers.
“I realised that this line of questioning gave people with disability a voice and they spoke very frankly. We got to a deeper level of understanding through this narrative approach to research.”
Natalie’s principal PhD supervisor Professor Sally Robinson – a Caring Futures Institute expert in research to benefit people with disability – is greatly impressed by the fresh perspective provided by Natalie’s research, through her careful interviewing of people. “The key aspect of Natalie’s research is that she asked people what they want to have fulfilling lives,” says Professor Robinson. “The absence of abuse in their lives is not enough. Safety is both a positive and effective target to direct future policy that will best serve the interests of people with disability.”
With her PhD now conferred, Natalie hopes to engage with the supported accommodation organisations that she partnered with to conduct her research, to help them in practice development that will build better engagement with the residents they support, and increased the capacity for people with disability to make more informed decisions about things that impact their wellbeing and quality of life.
Natalie will also commence writing articles from her research to build on the growing body of literature about the lived experience of people with disability, and she is confident that heightened knowledge of what impacts people’s sense of safety will provide a powerful support platform for people with disability – which is so important in the wake of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.