Ghislaine and Toniette
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.
Ghislaine passed away a couple of years ago in her 40s.
Her sister Toniette told the Royal Commission that Ghislaine had been diagnosed with a rare genetic disorder in her early teens. After an acquired brain injury, she ‘went from being this active, normal, full-on woman to a disabled person’. She ‘just seemed to get lost in the system’ and was ‘not cared about’.
Ghislaine struggled to access disability supports. In her 30s, she eventually got into a palliative care home.
‘There wasn't much around in those days for younger people with high complex needs apart from, like, an institutional-type thing, a hospital. But we didn't want that for her.’
For the few years prior to her death, Ghislaine had been in supported independent living, ‘purpose-built for people with brain injuries’.
Toniette said Ghislaine always felt vulnerable at the home ‘because she couldn't voice concerns’. Support workers ‘talked down’ to her and ‘didn't seem to listen to her’.
‘She was hard to deal with, she had a lot of involuntary movements … She used to lash out as well, or not let people do things. Some of them just didn't know how to cope with that.’
Toniette said most of the staff had English as a second language, but were dealing solely with people with brain injuries. In ‘heated and upsetting meetings’, the service provider would blame Ghislaine for ‘communication breakdown’.
‘I said, “If you've got people who are not understanding and finding it hard to communicate with her, I am sorry, but they shouldn't be there or they need more training.” To me, that is a breakdown on their part and on the carer's part.’
In the last 18 months of her life, things started to go downhill and the provider stopped the family from contacting Ghislaine.
‘All the calls were screened.’
Ghislaine was alone and staff ‘didn’t even try’ to spend time with her.
Toniette said nurses were carrying out procedures ‘against her will’.
‘The staff had made appointments to see her doctor without her knowledge. That's where we realised they were trying to find something to get her out of the house … They wanted to discharge her into a nursing home. But we had no transparency, no honesty. They just used to put it back that either her care was becoming harder, or their staff might be in danger of catching something from her.’
Toniette was just about to move Ghislaine into a new house when the service provider had her sister hospitalised.
‘[The manager] said he’d spoken to the head of emergency … and this doctor had told him that yes, she should be in hospital.’
But the doctor later said ‘he never told him that’.
Ghislaine was not ill at the time and didn’t want to go to hospital.
‘But she became unwell, deteriorated, and ended up in the ICU.’
Toniette wants to see better monitoring of disability support services.
‘To me, it’s necessary to have a watchdog … More regulating like the spots checks and things like that. Speaking to the families, speaking to the clients.’
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.