Melvin and Duke
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Melvin is in his 20s. He is autistic and lives with epilepsy and post-traumatic stress disorder.
‘He was born prematurely … and he was about three years of age when he got diagnosed with autism,’ Duke, his dad, told the Royal Commission. ‘So, my wife became his teacher. She more or less started schooling straight away with [Melvin] once she realised the implications of being diagnosed with autism.’
Duke lives in regional Australia. When he tried to enrol Melvin at the local primary school, the principal wouldn’t let him.
‘The principal basically said to me, "I know it's the law, but it's not going to happen on my watch, mate." And I sort of took that on the chin.’
The family moved to another town so Melvin could go to school.
As Melvin got older, his behaviour deteriorated. Duke struggled to find service providers with appropriately-trained support workers.
‘They basically take people off the street. The next thing they are working with someone with God knows how many different types of disabilities … I've had three or four carers bitten, and now it's sort of got to the point where the last provider … pulled the pin because they didn't want to risk their workers. And I don't sort of blame them.’
Duke said he decided to hire support workers privately. He found a behavioural specialist who had a criminology qualification.
‘So, under the rules as they were with NDIA – I sort of learnt this over time – anybody with a university degree that the provider decides is related to behaviour can become a behavioural specialist.’
Duke said the specialist spent ‘six months sitting in his office generating little bits of paper’.
‘Now, my support coordinator was looking at it, as was I, and we could not for the life of us see where the value was in $20,000 worth of work.’
He said the art therapist and speech pathologist were also charging ‘top dollar’, but none of them would go near Melvin.
‘Everybody has taken the money. No-one is doing the work.’
Duke said when Melvin recently bit a support worker, he discovered the worker wasn’t covered by personal accident insurance.
‘Smart cookies that work in the care industry … can charge at $63 or $64 an hour, straight out direct to the client. They don't even have to have accident insurance which leaves them in a position, legally, where if anything goes wrong, they can sue the householder.’
A couple of years ago, doctors diagnosed Duke with a terminal illness. He’s been trying to arrange care and accommodation so Melvin can live safely after he dies.
‘It's too easy for everybody to sit back and say, "Well, look, [Melvin] has got all these issues." You know, where was all the support to try and help him deal with these issues?’ Duke asked the Royal Commission. ‘I really thought a couple of months ago I had finally gotten on top of things, and now I'm back to probably worse than where I started.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.