Annmarie
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.
Annmarie is in her 60s and has progressive ataxia, which means she struggles to walk and uses a wheelchair. She also has difficulty swallowing and speaking.
‘I have no informal supports to help me so I am 100 per cent reliant on the help I get from NDIS for everything in my life,’ Annmarie told the Royal Commission. ‘I am grateful, don’t get me wrong, for the help I can get. I think it’s fantastic I get this help. But it’s not enough and … I worry about my future. Where do I end up?’
When the NDIS started supporting Annmarie a few years ago, it gave her access to funding but didn’t tell her how to use it.
‘I don’t know anything about how to implement that plan at the time. There’s no information … I don’t know what support workers do, how they help you, any of this. It’s all new to me.’
Within a few months the NDIA reviewed her plan and slashed the funding because she didn’t use some supports.
‘I can’t even find me one physiotherapist, never mind a dietician and a physiologist, OT [occupational therapist]. All of those – to find it takes quite a bit of time.’
Annmarie said the NDIA reviewed her plan more than 10 times in the past few years.
‘I’m scared when the plan gets changed because I think, “Here we go again.” And I am less able to do this process and think about it and follow it because my cognitive started to decline too.’
Annmarie tries to advocate for herself, but stress makes her condition worse.
‘They are constantly taking away. I am constantly asking to put a bit more back please for that.’
For example, the NDIA agreed to fund specialist disability accommodation for Annmarie to live by herself, but after she moved into the apartment she was told she had to share.
‘I get told after a month it’s a decision made in error … this becomes now something that has taken up my energy and time. How many months and hours that I have spent dealing with these errors in my plans?’
Annmarie said often when she goes to the Administrative Appeals Tribunal to challenge a decision, the NDIS admits it’s made a mistake and promises to fix it.
‘I want to understand what’s going on. I can’t keep doing this. Every time I get the plan, things I think are resolved and sorted and discussed start to get ripped out again and I have to address it.’
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.