It leads to persistent tensions between how people with disability want to be treated and the quality of care and support being delivered to them.

At worst, this divide results in violence, abuse and neglect for people with disability trapped within an inadequate care system. The awful neglect that led to the degrading death of Ann Marie Smith in her Adelaide home provided grim evidence of a system that is failing the people it is supposed to assist.

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability is demanding action to change this situation, and Professor Sally Robinson’s research provides evidence to argue for people with disability to have greater authority over their own care decisions.

“For over a decade, our researchers have been working with people with disability who rely on daily support.

"They not only described deep-rooted violence and abuse, but also their ideas and strategies for resisting it,” says Professor Robinson, Professor of Disability and Community Inclusion at Flinders University. “It’s striking that the more entrenched people become within closed systems, the less they are heard. In our research, many service providers and policy makers see these problems differently, and often as less of a priority.”

Professor Robinson has listened carefully throughout her research career, working alongside people with disability as colleagues and co-researchers. “We need to avoid the us-and-them conversation. We have to find more effective ways of working together if we are going to provide adequate solutions.”  

Her body of research demonstrates that both adults and children with a wide range of disability have significant knowledge, ideas and strategies about how their needs can be best served. She also learned that largely these voices have either been ignored or dismissed.

While the Royal Commission has triggered agreement that things must change, clear direction is needed about what new measures will be effective and valuable. The holistic nature of what needs to change is sweeping, and Professor Robinson says it’s critical we look beyond the disability support sector to other key domains where people with disability are very much affected by the quality of policy and practice – the domestic violence sector, the transport sector, the general health sector, the education sector. “It’s all connected.

"People with disability don’t just exist inside the disability sector – they are our family members, our neighbours, our workmates and schoolmates. They live in the world. It’s up to all of us to recognise that and build greater inclusion.”