Gideon and Afiya
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.
‘They make you feel selfish for using any services whatsoever. And, you know, it's a privilege that you're getting services, but then they promise you the earth and never deliver.’
Gideon is in his 20s and is autistic. Doctors recently diagnosed him with schizophrenia. Afiya, his mother, has two other sons with autism, and she’s the main carer for her mother and father.
‘So, it's been a bit of a difficult time, shall we say,’ Afiya told the Royal Commission.
Gideon lived at home until his schizophrenia diagnosis a few years ago. When he became ‘too much to handle’, Afiya looked for respite care.
The first provider told Gideon to leave after a couple of months, giving ‘no supporting reasoning’.
‘They gave us two days to find another provider, which also included accommodation.’
Gideon’s next provider changed its mind when it discovered it didn’t have enough beds.
Afiya said his current provider neglects him.
‘There were also times when they didn't provide food in the house, and the food that was being left in the house was minimal and it was expired.’
Afiya said all providers promised to develop Gideon’s skills, to help him become independent, ‘but they don't do anything for the participant, for their client’.
‘They're getting all this money, and … you don't seem to have any comeback. Like, you're just at their mercy, whether it's the provider or whether it's NDIS, you have no real power. I don't. My son certainly doesn't.’
For example, when Gideon’s house recently flooded, his service provider moved him without support into a motel.
‘Without contacting me … they dumped him there. They hadn't fed him all day. He'd had no access to food. He had no medication with him. He had no belongings with him. And they'd taken his support service dog.’
Afiya said one of Gideon’s goals was to find a job and become independent, but the service provider ‘never took him out into the community’.
‘They cancelled his transport at the last minute. Staff wouldn't show up at all.’
Afiya said that, because he wasn’t using the money set aside for transport, the NDIS ‘slashed’ Gideon’s funding.
‘The NDIS said in their wisdom, “Well, he's not participating in the community. He doesn't need transport.” So, they took it away from him. So, I just feel like you're just constantly battling all the time and you're getting nowhere. And I can't get anyone to help me. It's just a terrible system. You just feel so helpless and hopeless. And if I feel like that at times, how does my son feel? I feel like I'm failing him all the time.’
Afiya said the NDIS and service providers have ignored her complaints.
‘If I'd had the proper supports and the communication so I knew what was going on and I could work together with them and feel actually listened to, and I could resolve issues and get some results, I could help him be the most independent person that he can be,’ Afiya told the Royal Commission.
‘It would actually save the system in the end because he'd be a lot more independent and I could actually use less support services. But I seem to be frustrated at every turn to achieve that goal. So, the system is working against me.’
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.