Prevention is better than cure: abuse and neglect of people with disability

By Sally Robinson

Ann Marie Smith. Willow Dunn. David Harris. These three people have become known across Australia recently for the shocking and disturbing violence and neglect which resulted in their needless deaths.

Further news of two teenage boys locked in squalid conditions served to underline the continuing litany of maltreatment faced by people with disability of all ages.

While media attention is high just now, we need to keep front of mind the fact that people with disability are subjected to violence, abuse and neglect every week.

It is well established that people with disability experience violence, abuse and neglect at unacceptable rates, significantly higher than the broader population. Children, women and people who rely on service systems are at higher risk again.

We know from both advocacy and research that people with disability have extensive knowledge about this problem and how it can be addressed. Over the last decade, there has been a vast advocacy effort by Disabled Peoples Organisations to make change to systems, policies and practices to better protect people with disability from harm.

Ann Marie Smith died in May from serious medical conditions that developed while she was being cared for in her home.

Alongside this sits a growing body of research. Ten years ago, I sat with people with disability through their trauma and grief as they shared their experiences of abuse, neglect, violence in disability service systems.

Five years ago, I worked with young people with disability in other research projects as they spoke with more hope about their strategies for avoiding harm and their hopes and aspirations for building safe and resilient lives. Last year, we worked together on how to build safe and respectful cultures in services.

In this time there have been multiple inquiries into violence, abuse and neglect, culminating in the current Royal Commission into abuse, neglect, violence and exploitation against people with disability.

Caring Futures Institute research lead Professor Sally Robinson says we are not prioritising investment where it’s needed most.

We have seen massive systems change, most notably the introduction of the National Disability Insurance Scheme (NDIS), and its oversight body the NDIS Quality and Safeguards Commission.

The disability systems connect with a changing child protection context in the wake of the Royal Commission into institutional responses to child abuse, which itself made multiple recommendations pertinent to children with disability.

The domestic and family violence sector is turning a stronger focus to intersectional approaches which better include women with disability and their children.

With so much investment, how can so little have changed to make people’s lives safer?

The premise of the NDIS was that people with disability would have choice and control over the way they live their lives and how they receive support.

However, the disability services system is proving stubbornly resistant to transformation. Much funding continues to support people in old systems that we know don’t work well.

In services and supports which are hollowed-out versions of the kinds of service they received before the NDIS – often provided in segregated settings, resistant to real control by people with disability and their families, yet now lacking the investment in infrastructure which allowed for staff training, responding to crises and organisational capacity building.

We are not prioritising investment where it’s needed:

  • In having multiple ways to listen to people with disability – about their lives; their aspirations; their worries; and systemically about their priorities in design of their services; and policy that responds to their priorities and aspirations
  • In ensuring we resource and support people with disability to recover from the experience of violence, abuse and neglect
  • In being less prescriptive about what a good life is like for people with disability
  • In resourcing workforce development to ensure support workers and managers are capable, ethical and skilled in providing trauma-informed support
  • In moving beyond self-reporting and compliance-driven approaches to abuse prevention
  • In putting in place active, independent NDIS support coordination wherever people are socially isolated or at risk in other ways (to monitor the fundamental quality of support; physically meet with the person at least quarterly; ensure they receive support from more than one provider, + more aspirational support to build connections and belonging)
  • Returning to the idea of safety planning for people who are socially isolated, as it is implemented in the domestic and family violence field

Over and above particular strategies to respond to part of the problem, there is a fundamental issue.

This is our continuing collective failure to realise that preventing abuse is not enough. Without actively working with people with disability to build connected, engaged, flourishing lives, even successful abuse prevention strategies leave people at unacceptable risk of harm.

Building the conditions that support real connectedness and belonging is the best possible investment we can make in abuse prevention.

Professor Sally Robinson leads research and academic practice in Disability and Community Inclusion in the College of Nursing and Health Sciences at Flinders University. She is the Better Communities theme lead in the Caring Futures Institute.

Prof Robinson recently hosted an online Flinders BRAVE lecture: Righting the wrongs: building safer lives for people with a disability, on 2 July from 5.30pm. Watch the recording here.

Contact Prof Robinson at sally.robinson@flinders.edu.au

 

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