Alain and Sybil

Alain is in his 30s and has intellectual and physical disability.

‘[Alain’s] brain didn’t develop when he was in utero, so his brain has an overall abnormality,’ his mother Sybil told the Royal Commission. ‘It’s given him rare medical conditions … [and] his support is actually really complex.’

Alain attended special school for a few years, and in his teens spent time in a respite house.

‘There were lots of people that had been supporting him … He’d be quite happy – loved everyone, always laughing. There were never any issues. I was never concerned about abuse, to be honest. I certainly didn’t know anything about the risk of abuse in group homes.’

Alain moved into a group home when he was about 20. Sybil realised after about 18 months that something was not right.

‘I started finding bruises and then he stopped eating. Like, on his wrist, there’d just be bruises that were just black and would actually go through the skin. He does not have the cognitive capacity to understand what abuse is, so he can’t tell us.’

Staff never informed Sybil of any problems.

‘The workers in the house, the team, were saying, “He’s fine, there’s no issues.”’

But she increasingly became aware of the mistreatment. Alain was showing signs of emotional distress.

‘He would self-harm by biting his wrists. The abuse he suffered included things like neglect, where he wasn’t being fed. He was frogmarched into a bathroom because he didn’t want to have a shower. He was hit by other residents in the house. One of the residents had a walking stick, used to call him “the clown” coz [Alain] makes a lot of noise. We know that at least on one occasion [Alain] was hit with the stick.’

Sybil said staff were neglecting his ‘complex medical needs as well as complex disability needs’.

‘With the physical disabilities that he has, and with the autism, if he doesn’t eat his dinner then his blood glucose will drop, which could cause him to go into a coma and die.’

Things came to a crunch when staff let his blood glucose go down ‘to near fatal levels’, Sybil said.

‘So an ambulance was called … He could have died that day and there would have been no repercussions on the provider – and it was the provider’s fault. The workers weren’t trained … They would have just filled the room. There would have been a new resident.’

Sybil removed Alain from the home, but the abuse left him with post-traumatic stress disorder.

‘He has been diagnosed with PTSD. He’s been diagnosed with generalised anxiety and also with situational anxiety … I think part of the issue is that he liked and trusted them and then it came unstuck. For me, it’s really sad to see because he was always the happiest person in the room, and now he’s not that person. But we have managed to keep him safe.’

Alain is now living in a rental property with 24/7 care from support workers and his family.

‘He has always liked being on his own. And he likes his own space. There’s currently no real option other than what we’re doing for him to be in a safe environment.’

But the NDIA wants to put him in a group home again because it’s cheaper. Sybil says the agency should facilitate the right of people with disability to choose where they live.