Wolfie and Marianne
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.
Wolfie, in his mid-20s, is autistic and has intellectual disability.
Wolfie lives at home with his parents and works two days a week in supported employment, which he enjoys.
His mother, Marianne, says that while the wage is low – just $6 an hour – she doesn’t want to see supported employment abolished.
‘If [Wolfie] didn't have this option, he would technically be unemployable. He needs that hands-on, he needs that guidance, he needs that structure that a normal workplace would not be able to provide him,’ she said.
‘Tonight he'll get home and he will prompt me to say, “What happened at [work]?” And I'll go, “Oh, what did you do at work today?” “Did the dustbins,” [he’ll say]. And you can see he is proud of what he's doing.’
Wolfie receives NDIS support, but Marianne has had to go to court to access his full entitlements after plan reviews resulted in reduced funding.
At the moment she is in dispute with the NDIA over housing for Wolfie. He has a friend he wants to live with, and the families of both young men have put together a detailed proposal for the NDIA about how this could work. The NDIA wants to make significant changes to the proposal, which would mean it no longer meets Wolfie’s needs.
‘All these people who are making these decisions at the NDIS haven't met [Wolfie]. Especially since COVID, because we don't do any plan meetings face-to-face anymore. None of them know [Wolfie].’
She is frustrated by their lack of understanding, their inefficiency and the difficulty of accessing information from them. Several times they have lost important paperwork they requested. As well, she said, ‘they make up stuff’.
She recalled being at a case conference and asking the NDIS lawyer how certain calculations were done.
‘The lawyer sat there and said to me, “Well, we spoke to the SIL [supported independent living] provider, and …” And I said, “Stop there. We don't have a SIL provider. So how did you work out the funding?” And they said, “Well …” And I said, “Well, I'll tell you. I've done a Freedom of Information request and I've got a copy of the timetable that you guys made up out of I don't know where – with no information from me – because it's totally incorrect. And your calculation's been made on totally false information.”’
Marianne said the NDIS used to be different.
‘I've seen the change. I've dealt with it from day dot. And in the beginning, it was very – very inclusive. It was about having a conversation. It was about – the planner would sit there with [Wolfie] and me and get to know [Wolfie], and have a conversation about what he wanted to do through life.’
These days, she feels her dealings with the agency might give her a heart attack.
‘They just are so untrustworthy. They make it up as they go along, they don't care,’ she said.
‘I mean, it's not a matter of not knowing the rules of the game. I don't know which game I'm playing half the time. Do I need a bat? Or is this a game where I need to shoot a ball in a basket? And then this week I'm shooting between the two posts … It's constantly moving and changing, and there's no sense of solid ground to be able to be confident that in – you know, that [Wolfie] will be supported to have the life he has the right to have. And that's with me fighting tooth and nail. What's it going to be like when I'm not here to do that?’
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.