Marcella
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.
‘For me NDIS stands for Nightmare Disaster Insane System. I would like it to stand for Nice Delivery in Service. There is no service.’
Marcella lives in rural Victoria with physical and psychosocial disabilities after an accident in the 1990s.
‘I ended up with a hole in my face, it fractured my eye socket cheekbone and jaw, pinched nerves in my vertebrae and back and neck,’ she told the Royal Commission. ‘Since then I have lived with PTSD (post-traumatic stress disorder), anxiety and constant pain.’
For two decades, Marcella was receiving supports from a regional health centre and hospital.
‘I had home help, weekly cleaning, weekly counselling and regular physio. I had services in place that worked and supported me. When the NDIS took over, I did not know what to expect from them and trusted that the service would help me.’
The NDIS cut all Marcella’s ‘other services’ when she got her first plan four years ago.
‘The physical disabilities weren't included at all. As a result, I'm taking more morphine-based painkillers, up to 15 a day … If I can minimise the number of painkillers, use therapies to support my pain management, the better physical and mental quality of life for me.’
Marcella has found dealing with the NDIS ‘like hitting a brick wall’.
‘It's challenging getting appointments generally with doctors and specialists. Even catching up with plan managers and support coordinators is difficult as we live some distance away.’
She’s been through several service providers.
‘There was no consistency in the services that I needed – I couldn’t rely on them.’
One provider billed her for assessments she never had.
‘They didn't show up to scheduled appointments … They cancelled all my current supports and put their own in at a dearer rate which was not approved by me.’
Once, a support coordinator left her ‘alone with no supports’ for weeks but continued to charge for their work.
Marcella says plan managers ‘create their own rules to suit themselves’ and ‘one area doesn't communicate with the other – it's disjointed’.
None of them have addressed her needs for physical treatment.
‘One planner said I've got to prove that my disability is permanent. And I just replied, is 25 years permanent enough? She didn't even bother to look at my medical stuff and I just came away shattered.’
Recently, a provider was billing the NDIS while refusing to explain to Marcella ‘what the invoices were for’.
With her new support coordinator, Marcella has spent the past six months trying to organise a review of her plan.
‘The NDIS has been a never-ending saga from my experience, which has added to the trauma and I feel like a hamster on a treadmill. I want my life back, because all I do is spend all my time on NDIS.’
Marcela says the past five years have been ‘detrimental’ to her health mentally and physically’, leaving her ‘wanting to step in front of a train at one stage’.
‘I'm now deciding whether to continue with the system or walk away with my sanity. I didn't expect NDIS to fix everything in my life, but it would be great if it worked for me as a support.’
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.