Iyla and Adalynn
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.
‘Her whole life has been taken from her and they control everything she says and does, basically.’
Adalynn is the older sister of Iyla, who’s in her 50s. Iyla has Down syndrome and an intellectual disability.
Until a few years ago, Iyla lived independently in her family home in a regional town. At times, she lived in her own unit.
‘[Iyla] has had a pretty happy life,’ Adalynn told the Royal Commission. ‘She has achieved many things in her life.’
Iyla had a job and used public transport, did her own shopping, attended yoga classes and was part of a dance group.
‘I’m very proud to be her older sister. And we’re not just sisters, we’re best friends. We used to do a lot together, actually.’
Several years ago, their mother became ill. A family dispute over guardianship ended with the public guardian taking over.
‘They moved [Iyla] out of the house. [Iyla] didn’t want to go.’
Adalynn said that, at the time, the NDIS funded a support worker.
‘It was $70,000 at the time and that was ample for what [Iyla] was needing.’
The public guardian placed Iyla in a group home.
‘She’s, I believe, now worth millions of dollars under NDIS, [to the] service provider, because she’s confined 24/7.’
Adalynn said her sister ‘didn’t want to live there’. The service provider supervised all their meetings. A couple of years ago, the public guardian moved her to another provider.
‘It’s an organisation that popped up, as they call them, “pop ups”. When NDIS was started. And they’re actually larger now in the three-and-a-half to four years that they’ve been going than other established ones before NDIS.’
Adalynn said the public guardian gave the service provider running the group home the power to make decisions about Iyla’s health.
‘I was not able to know information about any of [Iyla’s] health matters, any of her life.’
Adalynn said the service provider didn’t like her visiting her sister.
‘She’s not allowed to go to the yoga class at all now. She’s denied that, denied her community, her access to friends she’s known for over years. Many things she’s been denied, not by her choice. It’s not her choice.’
The service provider also prevented Iyla from spending Christmas with Adalynn.
‘She was having to stay in the house. Her first Christmas ever. And this is somebody who still believes in Santa Claus … She was just quite distraught.’
Adalynn said that after she sent Iyla a cake for her birthday, the service provider asked the police to issue an apprehended violence order, on behalf of Iyla, against Adalynn.
‘[Iyla] would have no idea this is happening.’
Adalynn is trying to overturn the order. She said she fears Iyla is now ‘a commodity’ because of the size of her NDIS plan.
‘This is my sister,’ Adalynn told the Royal Commission, showing us a photograph. ‘That’s [Iyla] and I two years ago. I think she looked pretty happy. She’s so gorgeous. She doesn’t deserve what’s happening in her life.’
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.