Darrin and Carine
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.
Darrin is in his 20s and has spina bifida.
‘He would like to be happy and friendly and outgoing, but he has so much anxiety around things that have happened to him happening again that he really struggles to do that,’ his mum Carine told the Royal Commission. ‘He wanted to live as independently as possible.’
A few years ago, Carine helped Darrin move out of home into supported disability accommodation (SDA), even though it was in another region.
‘We thought we’d hit the jackpot. He got into a [service provider] property which, as a building, is absolutely amazing.’
But after 18 months in the home, Darrin weighed less than 40 kilograms.
‘I can’t tell you how bad I feel,’ Darrin told his mum over the phone. ‘I'm just going to send you this photo.’
When she saw the photo, Carine immediately organised for him to be flown home.
‘I nearly burst into tears at the airport. I thought if he’d been in there another week he’d be dead. He was so thin. He was so grey. He looked like he’d aged 30 years. He looked like he was about 60 years old.’
Carine said when she asked the service provider for his food diary ‘there was just day after day after day of nothing entered into it’.
‘And then there’d be, like, “Offered him food.” Did he eat it? What was it? We don’t know.’
Darrin needs one-to-one care 24 hours a day and is supported by the NDIS. But after Carine moved him to another SDA home, the NDIA cut his funding by about half.
‘I rang and I said, “What do you want me to do?” Because they wanted him to have seven hours of support a day, no overnight, and for him to be in the house on his own the rest of the time. And I said, “Well, if you do that he’s going to die because he can’t do his own catheter, he can’t prepare his own meals, he can’t get them out of the fridge, he can’t open the door.”’
The NDIA then suggested he move to another house ‘so that he could have one-to-three’ care.
Carine struggled to find someone at the NDIA she could talk to.
‘I was ringing every single day. “Can you please make contact with me?” … And this went on for three or four months. Not once did I get a phone call back.’
Carine and her husband eventually gave up trying to find a suitable home for Darrin and set up their own service provider.
‘We decided when all of this happened that we needed more oversight and more control over where he went and who had access to him. And so we set a disability share-house and then we put him in it.’
Darrin’s since had his original funding reinstated.
‘It’s taken us two years to get good support around him … He’s safe now. He’s happy now. He’s putting on weight, which is great.’
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.