Zena and Tilda
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.
‘A funded provider should not be permitted to put in an application for guardianship to a tribunal. They have, which is irrefutable, a financial vested interest in the outcome.’
Zena is autistic and has intellectual disability. She lived with her foster parents until a couple of years ago. ‘They raised her for 20 years, you know, since she was about the age of 14,’ her foster sister Tilda told the Royal Commission.
Throughout that time, Zena attended a day program run by a mental health and disability service.
‘They have been involved for a very long time. When my parents wanted to change day programs, they actually threatened them … That's what happens when people kind of control the situation.’
Prior to the rollout of the NDIS, Zena’s decisions were ‘made informally by the family’.
‘[When the] NDIS came in … within months she had her first guardianship order placed on her at the initiation of providers.’
Tilda believes the catalyst was the family requesting that Zena’s NDIS plan switch from agency-managed to plan-managed. This would have allowed her to do activities offered by different providers.
‘We wanted to give her the most choice and control, whatever she wanted to experience … to engage with community and mainstream-type services that weren't registered with the NDIS.’
Within 24 hours, a second provider who coordinated Zena’s supports applied for a guardianship order on her, Tilda said.
‘[It stated] that her foster family was going to kidnap her and she was at great risk of harm. They did it in secret. They didn't tell any of us.’
Tilda believes the two providers colluded to take control of Zena’s personal decision-making for financial gain.
The tribunal ‘put the order on’ even though neither of the providers were able to ‘back up any of their allegations’.
‘And then it's just got worse from there.’
Tilda said the guardian moved Zena into a ‘completely inappropriate’ group home run by her long-time service provider without consulting the family. Within months she was hospitalised ‘at critical levels’.
‘So it took them less than six months to pack the weight on her and she ended up with a diagnosis of type 2 diabetes.’
A tribunal recently revoked Zena’s guardianship, but within a couple of months the provider reapplied.
‘As soon as they thought they were going to lose a client and lose funding, they slapped another order on her to stop that happening.’
The provider claimed that the family was ‘exploiting, coercing and abusing’ Zena and was responsible for her ‘current critical health’. Tilda said the tribunal took this ‘hearsay’ into its decision-making.
‘It was very clear to us that the tribunal didn't consider any of the evidence we submitted that actually stated the facts and refuted the outrageous allegations from the provider and from the public guardian. They were very clearly biased.’
Zena indicated to the tribunal that she wanted Tilda to be her guardian ‘if she needed one’.
‘They haven't taken any notice of this either. In the hearing, she didn't really get to speak very much at all.’
Tilda fears Zena’s health will deteriorate now the public guardian has been appointed for another two years.
‘[Zena’s] human rights have been decimated, her entirely family have been traumatised, and she is going to be facing more trauma. We only have her best interest at heart. We lost.’
Tilda says Zena has lost control ‘over every function of [her] life, including health, medical services and access to her family’.
‘We will have to ask permission if we want to speak to her, whether or not we can take her out to coffee. It is beyond devastating, and she won't understand.’
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.