Phoenix
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.
‘There’s not supposed to be neglect. There’s not supposed to be abuse. There’s not supposed to be things paid for that aren’t received.’
Phoenix, late 20s, is autistic. They have chronic fatigue syndrome, fibromyalgia, postural orthostatic tachycardia syndrome and use a wheelchair.
A couple of years ago Phoenix moved into an apartment managed by a supported independent living provider.
Phoenix told the Royal Commission the standard of care was far lower than the provider promised. Phoenix was often left without support workers. The provider gave little or no notice when workers couldn’t make their shifts and charged Phoenix regardless.
Staff didn’t take COVID-19 protocols seriously. They pulled their masks down when they talked and didn’t practice social distancing. Phoenix wasn’t vaccinated at the time and was very concerned about becoming ill.
The apartment was unsuitable for someone with a disability. Phoenix couldn’t turn their wheelchair around easily. There wasn’t enough furniture and many items in the apartment didn’t work. The shower and laundry flooded regularly. The bed was ‘extremely old’ and caused Phoenix ‘a lot of pain’. They ended up sleeping on the floor.
The provider charged Phoenix $300 a day. Phoenix asked for a breakdown of costs and an itemised invoice but they never provided one. ‘I contacted the NDIS to say can we halt these payments until we work out what services [are being provided].’ The NDIS initially agreed but Phoenix discovered they had already paid the provider in full.
Phoenix followed the established complaint channels, including making formal written complaints.
The provider either ignored the complaints or made Phoenix feel ‘guilty’ saying, ‘we are bending over backwards to help you’ and ‘you should be more grateful’. They kept promising to fix the problems but nothing happened. ‘That was just lip service.’
The situation increased Phoenix’s stress levels and they experienced suicide ideation. Phoenix called an ambulance and was admitted to hospital under psychiatric care.
Phoenix felt the only option was to find another provider. After the service agreement ended, Phoenix moved out and posted a negative review about the provider online. ‘I posted a picture of where I was sleeping on the floor.’ The provider threatened Phoenix with legal action if they did not remove the post. Phoenix had ‘lots of pictures and videos’ and their support workers and occupational therapist told them they would ‘back [them] up’. Phoenix obtained legal advice that there was enough evidence to challenge the provider.
However, it ultimately became too stressful and overwhelming and Phoenix’s health deteriorated. They signed a legal agreement with the provider that they would not post any comments or speak publicly on social media. Phoenix felt the provider ‘silenced’ and ‘bullied’ them ‘into not being able to speak up’.
Phoenix complained to the NDIS Quality and Safeguards Commission but it ‘made things harder’ and ‘was just another set of hoops to jump through’. They felt like the commission did not seem to care and ‘cherry-picked’ only a few issues to half-heartedly respond to. Phoenix found this lack of interest ‘harmful’ for their mental wellbeing.
‘Almost every provider I’ve dealt with, unless they have a lived experience of disability, they don’t really care about my wellbeing, they don’t really care about providing the service or providing the care that’s involved with the service.’
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.