Logo of two hands holding up a person with text saying Every person with a disability has a right to be safe healthy and happy

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JULY, 2017

Are People with Profound Intellectual and Multiple Disabilities Being Forgotten?

by | Abuse, Disability

In the mad scramble to ensure the human rights of people with disability are not abused, a question is being raised about whether the cohort of people with profound intellectual and multiple disabilities (PIMD) is being forgotten. My son Christopher is a member of that cohort.

I recently attended a forum about preventing abuse and neglect which was run jointly by VALiD and NDS. VALiD, a well-known disability advocacy organisation in Victoria, gave a presentation called “Staying Safe” subtitled “Freedom from Abuse and Neglect Project”. The presentation is targeted at people with disability and encourages them to understand what abuse is – and to speak up if they experience abuse or witness abuse. There were people with disability in the audience, as well as support workers and representatives of disability service providers.

Page from the VALiD booklet

At the end of the presentation during questions, I asked how people like my son, who does not have the capacity to speak nor the cognitive ability to understand the concept of abuse, can be protected. Neither VALiD presenter could provide a sensible answer and then discussed communication devices etc. The speaker from NDS then intervened and told me that his presentation would be the one to answer my questions. The NDS presentation is part of their “Zero Tolerance, Focus on rights, target abuse” strategy.

I did not get any reassurance from the content of the NDS presentation. It spoke about the importance of circles of support and about ensuring the right staff were employed by the disability service providers. But during the discussion, the NDS presenter said the following …

“Having a disability doesn’t make you vulnerable. Look at Kurt Fearnley. Nobody would say he was vulnerable.”

James Bannister,  NDS Zero Tolerance Project

Well Mr Bannister, I beg to differ. If my son did not have his profound and multiple disabilities he would not have been abused and neglected. He would have been able to say something. He would have been able to leave. He would have understood that he needed to eat so he didn’t die. He would have been statistically much less likely to have been assaulted ….. etc. etc. Without his disabilities, my son would not have had to live in a house where he had no choice of his co-residents or the staff who could abuse and neglect him.

World Health Organisation

NDS Zero Tolerance Webpage

The cohort of people with PIMD are at even higher risk of abuse. Especially if they have limited cognitive and communication capacity. It is frustrating for many families who believe their loved ones do not have a voice and are being forgotten – by disability advocates – as well as by authorities designing the safeguards.

At the VALiD/NDS forum, I commended them for their presentation and their goal of empowering people with disability. It was said more than once – that empowering people with disability to speak up and get help was the best way to prevent abuse.

It seems somewhat optimistic to believe that a person with disability will feel confident enough to report abuse – considering the massive power imbalance between them and a support worker or service provider organisation. In our own experience, I myself was very hesitant to report because I was fearful of ramifications for my son – and I do not have a disability, nor was I dependent on the support workers for my accommodation or personal care!

“Why do workers abuse people with disability? My simple answer is: because they can. There is insufficient fear amongst workers.”

Ms Julie Phillips, Disability Advocacy Victoria
Section 1.4 Final Report
Victorian Parliamentary Inquiry into Abuse in Disability Services

I commend anyone who is trying something to reduce the abuse and neglect of people with disabilities.

I just wish that some of those efforts recognise that there is a cohort of people with such profound disabilities, that no matter how much we would wish it wasn’t so, cannot be “empowered” to report their own abuse. That, as in my son’s case, they are unable to tell or communicate specifically to anyone “what” exactly is happening – just show signs of incredible distress and eventually dangerous ill-health.

They rely totally on the integrity of the support workers around them to (a) not abuse them and (b) report anyone who does. It then of course, depends on the integrity of the organisation – to not cover it up.

Unfortunately, as can be seen from both the Senate and the Victorian inquiries into abuse – that hope is all too often dashed.

In the time it has taken you to read this page, it is highly likely a person with a disability has been abused in Australia.

It is Australia’s hidden shame.