Mahira and Sita
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.
Mahira is in her 20s. She is autistic and has intellectual disability.
‘She has got a lot of complex needs and she's got an IQ level … [of a] two to two-and-a-half-year-old,’ her mum Sita told the Royal Commission. ‘Everything that you do for yourself you’ve got to do it for her.’
Sita cared for Mahira at home until she moved into supported independent living (SIL) a few years ago.
‘I thought with my daughter moving out it would be a lot easier, but it’s actually made my life a lot more difficult.’
Sita said the support workers in her daughter’s SIL home watched television and ‘there was no monitoring’. The food was poor.
‘I had to come in, buy new groceries, put it in [the fridge]. Even complaints to the company, like, if I write emails it’s just brushed off.’
Mahira’s funding was also being ‘burnt up really fast’. Sita feared it would run out, but Mahira’s support coordinator reassured her that the NDIA would top it up when it reached zero.
‘I was also having a lot of issues in terms of neglect, food hygiene, lack of communication, lack of monitoring, a lot of different support workers coming in, so I pulled her out of there.’
She discovered the NDIA hadn’t topped up the funding and the service provider sent a debt collector to demand tens of thousands of dollars.
‘It’s very traumatic, it’s very emotional, it’s very draining. It’s tiring and I can’t function because of all the mistakes that people make. And we are the ones that are supposed to suffer.’
Sita found another SIL home, but discovered the service provider let Mahira’s poorly-trained support workers manage everything.
‘They're left very much on their own … and this is the feedback they tell me. They feel incompetent because they don’t have answers.’
Sita said she spent a lot of time ‘just letting the company know’ they’d forgotten something or medicated incorrectly.
‘I have to keep reminding them of GP visits. Even holidays, I have to remind them about holidays. So I feel that companies set up the place as livable and then they just shove the support workers in there and then it’s just expected to run.’
One day, one support worker saw another worker smack Mahira.
‘She reported it and the company actually did tell her not to inform me about it. But she did inform me two days later.’
Sita said the company was more interested in ‘trying to cover up the incident’.
‘I felt like my daughter was not seen as a person … It’s definitely neglect and ignorance from the company. It’s discrimination. It’s everything. So that was the last straw … I just pulled my daughter out, straightaway took her out to another company.’
Mahira is now in specialist disability accommodation (SDA). The NDIA cut her funding because of the change in circumstances and Mahira now shares a full-time support worker with another person.
‘That actually puts her in danger because she really needs full care. Like, you can’t leave her alone because she puts things in her mouth. She's not aware of the environment. She has no danger awareness.’
Sita said Mahira’s funding package still ‘seems like it’s a lot, but somehow it’s just not enough’.
‘I just can’t understand why it’s just not enough. I just think [the money] could've been used better.’
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.