Xolani and Hilaria
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.
‘It's very difficult to get them to break out of that cycle and to look at [the residents] as individuals, not dollar signs.’
Xolani is in her 20s and lives with Rett syndrome, a disorder affecting brain development. Hilaria is her mum.
Xolani uses a wheelchair, can’t speak and lives in a group home run by a service provider.
‘They're an old disability service provider and they're really struggling to get with the modern ethos of the NDIS which is, you know, choice and control, not institutionalised living,’ Hilaria told the Royal Commission.
Hilaria said staff are often new and inexperienced. They have over-medicated Xolani and withheld meals as punishment.
‘There's been, you know, instances where people have given her foods that she's not allowed to have, which is a high aspiration risk … I'm consistently having to have my daughter home. She is home with me today … because the service provider cannot provide familiar staff.’
Hilaria said Xolani sometimes has to sleep in her own faeces when the house is short-staffed.
One day, the service provider’s car was involved in a crash. Xolani, in the wheelchair in the back, broke her teeth. To claim insurance, to have the teeth fixed, Hilaria asked the service provider for the car’s details.
‘I kept ringing up saying, "Can you just give me the registration of the vehicle because I need that information to pass on to the third party, you know, to put in the claim." They wouldn't give it to me. I actually had to go get a lawyer, and when the lawyer wrote them a letter that's when they gave me the information. It was terrible.’
Hilaria said the service provider makes the residents pay for new furniture.
‘For example, a couch, a TV, although the girls' money is paying for it, it remains property of [the service provider] … So, out of that pool of money that they keep from the girls, which is their pension, they pay insurance on all the items, for example, the TV, the couch, this and that which don't belong to the girls, yet they're paying insurance for it … And when I questioned this, they can't really give me an answer, they are just, "Well, that's just the way it is."’
Hilaria said the service provider charges more than $7000 a week to look after Xolani.
‘I'd get amazing carers for that money, right? It's just ridiculous, they're charging so much money and not providing the service, absolutely not. It's all about management, you know, big CEO salaries. [The service provider] posted a [multi-million dollar] profit last year. They were not-for-profit.’
Hilaria said she made multiple complaints to the NDIA.
‘To me they're a toothless tiger, they don't do anything.’
Hilaria said she’s now considering bringing Xolani home, so she can care for her herself.
‘I don't know how long that's going to last. Yeah, very sad. Because I kind of figure, Commissioner, if all of this is occurring while I'm alive and involved in her care, she's going to end up being another [victim of neglect], she really is, because that's what happens when there's no-one involved. It's very sad.’
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.