River and Murielle
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.
‘Our issue was, where’s everyone’s duty of care?’
River is autistic and has intellectual disability. She is in her late 40s and is non-verbal.
Her sister, Murielle told the Royal Commission her parents ‘looked after [River] with no help’ until a couple of years ago when her mother fell ill. Murielle and her sister organised supports for River at the family home. This was their ‘initiation into the NDIS system’.
Murielle and her sister expected to be made River’s guardians because they ‘were tending to all her needs’.
‘And we felt like we were her lifeline as far as family went,’ Murielle said.
But the public trustee and guardian were appointed instead.
‘[They] were not really clear and transparent about information.’
From that point on, Murielle said, the service provider was ‘causing trouble in the house’. The support coordinator was ‘very antagonistic and rude and unsupportive’ and the support workers were ‘a nightmare.’ River ‘was not properly showered’, she was ‘smelling of urine and excrement’ and her ‘pubic hair was covered in faeces’.
‘Not only were they not looking after her hygiene, which resulted in health issues and two hospitalisations, but they were also wrapping her up in sheets, blankets, scarves, in order to stop her self-harm. There was obviously a restrictive practice that was going on as well.’
Workers neglected River’s meals and mostly bought her takeaways. They didn’t get her proper medical or dental care.
‘There was enough money to have her teeth looked after, enough money to buy fridges full of food.’
The two sisters ‘supplied over $200 worth of groceries’ when they visited but ‘were forbidden’ to look in the fridge or cupboards.
‘We weren’t allowed to look at anything. We were treated like lepers.’
Murielle said the negligence ‘was across the board’.
‘No-one was caring enough to check in to say “Hey, is [River] getting everything she needs?” So where’s the public trustee’s role in knowing whether she’s having grocery money spent? … That she’s not having dental care. There’s just been a big misappropriation of funds for her.’
Murielle said a trust fund from her parents’ estate set aside for River ‘went missing’.
‘Apparently the public trustee got their hands on it.’
Murielle voiced her concerns about River’s health to the guardian.
‘We asked them if we could provide meals because we were worried about constipation. They said no. They promised that they were feeding her.’
But a fortnight later, the office informed Murielle that River was ‘severely underweight’. She believes they’d been ‘covering that up’ for weeks.
‘I was calling every night … The support workers would sit her on the couch with a weighted blanket covering her up to here so we could never see her body and face.’
In 10 months, River’s weight plummeted from 60 kilos to below 45.
‘They were responsible for her condition … She starved.’
Murielle found River an advocate.
‘She was like an angel sent to us, because up until then no-one cared.’
River is now with another service provider and back to her normal weight.
‘Her self-harming has reduced. She’s a lot happier in herself.’
Murielle wants to see ‘tougher laws and fines around service providers and offices of the public guardian’ to hold them to account. And NDIS participants ‘should immediately be offered an advocate … so that everyone’s got someone to go to for support’.
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.