Kristi
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Kristi is autistic and has Tourette syndrome and attention deficit hyperactivity disorder. She also has a physical disability and uses a wheelchair.
‘At 12 years old, I was home schooled and training 60 hours a week for karate,’ Kristi told the Royal Commission. ‘I was very active, and now I use a wheelchair all day, every day. Like, that's been the progression of my disability over the past, you know, six years.’
Kristi is supported by the NDIS but says they ‘don't like that [her] support keeps changing’.
‘NDIS … don't seem to like that because it's been progressive as well. But my condition isn't medically defined as progressive, it's just the effects of it are.’
The NDIS initially rejected Kristi’s application for a power-assist wheelchair.
‘They're like, “You don't need one, like you can still use crutches,” We're like, "Well, I'm getting to a point where I'm not going to be able to.”’
Kristi said the NDIA tried to give her a more expensive electric wheelchair. Kristi persuaded them to fund the less-expensive, more suitable chair, but waited three months for approval.
‘I was bedbound for those three months, and the only reason it was approved is because my mother rang every day for about six weeks. And they're like, "These things take time, like, you know, we can't just hurry these things up,” and Mum was like, "She's bedbound, she's regressing.” … I couldn't get to physio. I couldn't do anything.’
The NDIA also told Kristi that she didn’t qualify for specialist disability accommodation (SDA). Kristi at the time was living with her mother, who also has disability.
‘And every time, you know, I had to go to the hospital, Mum couldn't move me, so we have to ring an ambulance and I didn't really need an ambulance. If I had the wheelchair I could've moved myself around.’
One day, Kristi fell and dislocated her shoulder.
‘I'd run out of funding and done my shoulder and no support worker was there, so I had to call an ambulance from my watch. And the hospital was not very keen to have me there, but they also weren't keen to send me home, because I didn't have support workers.’
Without suitable supports, Kristi’s condition deteriorated.
‘It's not the hospital’s job to provide that sort of physio … so I have declined quite a bit in hospital simply because NDIS couldn't make up their mind.’
Kristi said she has since been approved for SDA and recently moved into her own apartment with support workers on call.
‘That took a while.’
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.