Melanie and Babette
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.
Twenty-year-old Melanie is autistic and non-verbal.
Babette, her mum, told the Royal Commission that when Melanie attended a mainstream primary school, she witnessed staff ‘being extremely inappropriate’ to children with disability.
‘Down syndrome children, screaming at them. My daughter would go to school and they would mix up her incontinence aids and put a two-year-old's incontinence aids on. When she would come home, she would be all red. When I asked about it, they didn't like that.’
Babette’s complaints led to an investigation, which found that there was ‘abuse … and a lack of care for the children’.
Melanie then went to a special school, but her class had a high turnover of teachers.
‘And that just didn't work. And she regressed to almost a vegetable lying underneath a blanket the entire time. Became about 40 kilos.’
For the next four years, until she was 13, Melanie attended a supportive class and ‘progressed fantastically’.
Problems began when she joined the NDIS and needed support workers at home. ‘Basically, the support system outside the school environment for a person with level 3 autism is lacking intensely,’ Babette said.
Disability service providers constantly let her down.
‘They can just tell you overnight, "We don't have somebody for your daughter,” or “We don't want to give her support." They don't even have to tell you why. This industry is a casual-based industry, so all their workers come and go.’
Melanie needs someone to help her manage her behaviour – ‘to predict what she's about to do, or how she's about to escalate or deescalate.’ But her support workers see the work as a ‘stepping stone’ and have no long-term commitment to her.
‘The last provider was getting a ridiculous amount of money. And they had no intention of organising the consistent workers that we agreed to. In a month she regressed dramatically. There was in actual fact no trained person for her at all,’ Babette said.
‘This is the culture of calling a human being "a million-dollar baby" because they've got a disability like [Melanie]. In other words, providers are looking for million-dollar babies.’
Babette also points the finger at support coordinators.
‘In reality, all that they're happy to do is take the NDIS funding to ring you once a month … and then they will take the money out for that phone call. But if you tell [them], "Look, I need a new program for [Melanie]. Can you go and investigate that, make some appointments?" They can't do that.’
Melanie is onto her tenth NDIS plan. A support worker kept getting her behaviour support plan ‘all wrong’. ‘And sending invoices when she hasn't got any input from me. The plan goes less than 5 per cent to addressing her needs. It has basically no effect on 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.