Vivien
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Vivien is in her 50s. She has cognitive disability and complex post-traumatic stress disorder. She had a stutter as a child, but it was resolved after treatment.
‘I went in [to a shop recently] and I spoke to the lady and the lady looked at me like I had six heads and I'd spoken in another language,’ Vivien told the Royal Commission. ‘My stutter had come back … And obviously it was quite noticeable because she'd obviously just not accepted what I had said or not understood what I had said.’
Vivien had had a stroke.
Now, Vivien says, she’s afraid to go out because of the way people react to her stutter.
‘People would avoid serving me because they thought that I was actually drunk … Talking on the phone even became an unpleasant experience, and so the stutter that I had became worse.’
Vivien self-manages her NDIS support plan, but struggled after her stroke to apply for a new plan. Vivien said an NDIS representative recommended a support coordinator who wasn’t registered with the NDIS and seemed ‘obsessed with money’.
‘I remember wanting to know about the invoicing and know exactly, you know, what he was doing for me, how he was being paid. And he made it out to be too hard, you know, that he couldn't do that.’
When she was given her new plan he ‘worked it out pretty damn quick’ that his funding was being cut.
‘So immediately there, “Oh we need to appeal this.”’
‘He found an [occupational therapist] OT that was a friend of his and she came and did a shocking, shocking assessment of me. And there were lies in that assessment and his explanation to me over that was that's how they do it – you have to say … that it's really bad because that's how you get more money.’
Vivien said the OT, for example, reported that she was incontinent.
‘That sticks with me until today in my plan, that I'm incontinent. I am not incontinent.’
Vivien said her support coordinator was also supposed to find her a physiotherapist to help her recover from the stroke, but he never did.
‘He took away my choice and control. He just took away anything like my respect that I had built up, my self-respect. He took it all away.’
She sacked him and complained to the NDIS.
‘Someone was going to call me, and that went on for three weeks and no-one contacted me.’
Vivien said that when she eventually did hear from the NDIS, an officer advised her to ‘stay away’ from unregistered providers.
‘In saying that, then why have a gate open for unregistered people? Why even allow unregistered people in?’
Vivien said her new coordinator is ‘brilliant and registered’.
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.