Elliana
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.
Elliana, mid-60s, lives with Parkinson’s disease, rheumatoid arthritis, central auditory processing issues, debilitating migraines and psychosocial disability from childhood trauma.
‘I'm discriminated against by the federal, state, medical and disability models of management, for having more than one health condition,’ she told the Royal Commission.
‘To access funding under the NDIS, I cannot talk about my needs not being met by the medical model.’
Elliana said she is ‘forced to choose’ which NDIS-recognised medical condition ‘is the most disabling’.
‘There's this artificial break between health and disability, when they're intrinsic together. They're bound together. Health and disability are bound together. And we put a dividing line down with structures, “Disability this side. Healthcare that side.” It doesn't work like that.’
Elliana said she is ‘terrified of the NDIS’ and doesn’t trust them.
When she first received funding, about seven years ago, she was told the funding was ‘for life’.
Recently she discovered she will lose her NDIS funding if she isn’t able to implement ‘improvement goals’ or needs more home support or enters an aged care or disability residence.
‘My disabilities are discriminated against due to age, and because I cannot improve my degenerative disabilities with intervention.’
When Elliana rings the NDIA to discuss her needs, she is passed around or told to email.
The last time she rang, she said it took 40 days for the NDIA to respond.
Often, the NDIA suggests she look at providers’ websites.
‘If I want a service I am overwhelmed by choice and grandiose websites promising the world. I never can work out who can promptly do the job.’
Elliana receives funding for mental health support. But she needs crisis support, which the NDIS doesn’t fund.
She finds it difficult to find mental health service providers or support workers with mental health crisis training.
‘I'm constantly told by these service providers' delegates, “I have just the right person for you.” No one asks what type of person I would like – it's not part of the model.’
Elliana’s medical conditions and disability have affected her teeth. The NDIS does not fund oral health care.
Because Elliana is not able to find appropriate supports, her NDIS package is underspent. She is worried she will lose her funding.
Elliana believes the NDIS business model benefits the providers, not the person with disability or support worker.
For example, a provider will charge her $50 per hour but only pay the support worker about $18 per hour.
The first time Elliana used respite care, the provider charged $4,500 for four nights’ sleep over. The support worker, she said, received around $140 per night.
‘There are amazing models of care out there that we could be working with. We don't have to reinvent the wheel.’
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.