Institutes & Centres
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.
She insists the voices of those people must have an influence in forming policy and practice. “They are the ones with new knowledge about solving old problems. Privileging their voices can lead to policy change that can be scaled up. People with disability represent 20% of the population. They are not a minority population group. Their views count.”
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, established in 2019, is highlighting the urgent need to improve the level and quality of care available to people with disability, but also to ensure that care and human rights go hand-in-hand.
Professor Robinson’s research agenda connects the prevention of violence and abuse with improving the quality of support systems and relationships, as a pathway for building safer and more connected lives.
Recent research published with colleagues in the international Disability & Society journal identified the importance of rights in working relationships, noting that paid workers need to employ respect in their working relationships with young people with disability, to avoid the risk of people being viewed as an object of care.
“Caring is only part of the job. Respecting and valuing what each person contributes not only helps turn the focus on the capabilities and other needs of the young person, but brings both people into a mutual support relationship where the contribution of the young person with disability is more readily acknowledged. This must be enhanced by training and leadership from provider organisations employing support workers in our community.”
Professor Sally Robinson
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.”
“As a society, we tend to think this is a ‘disability’ problem, but it’s a social problem. It isn’t an easy or an instant process, but we have to make sure that people don’t turn away from the hard realities of making significant change and improvement. Making space to listen and respond to the priorities and perspectives of people with disability is a critical starting point.”
Article published on 13 November 2020
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