Clarke and Althea
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Althea is a single mother with chronic fatigue syndrome. Her son Clarke, who’s in preschool, is autistic, has attention deficit hyperactivity disorder (ADHD) and global developmental delay.
‘He can't go outside,’ Althea told the Royal Commission. ‘He's still having issues with even leaving the house because of the wind, the sound, the noise, the smell.’
Althea said a paediatrician initially diagnosed Clarke with global developmental delay and ADHD, but he became violent as a toddler. No treatment worked.
‘He was volcanic. I was too scared to walk around my house. To open my mouth. To look at him for fear of him lashing out bruising me and giving me fat and blood lips. It was flight of flight for me as a mum. He was my three-year-old son.’
When she sent Clarke to childcare, he lashed out at other children and she had to keep him home.
The NDIS supports Clarke, but Althea said the funding’s not enough to help her control his behaviour. Althea asked the NDIS to review his funding and took her case to the Administrative Appeals Tribunal (AAT) supported by doctors’ reports and an additional diagnosis of autism.
‘They were asking why, you know, where's the evidence? When they had the evidence the whole time … They just didn't, obviously, add it to his file or recognise it or read it. Like if they had have read it they wouldn't have asked the same questions over and over.’
Althea said she developed post-traumatic stress disorder dealing with Clarke’s increasingly violent behaviour, the lack of support from the NDIA and the arduous appeals process.
During the appeal, the NDIA cut Clarke’s support hours.
‘And then that affects him, his behaviours, his eating, his speech, everything to do with the autism that affects him because they've cut the hours back.’
Althea said child protection began investigating Clarke’s deteriorating behaviour and she was ‘in a constant state of panic’.
‘[Child protection] were also pushing for him to go to childcare, fully aware of his diagnosis.’
Althea said the AAT, however, ‘kept referring to him being a normal child’.
‘I realised after the fact, after the tribunal had finished, that they haven't read the evidence. They have not read the evidence. If [they had] they would not have kept asking me and saying these, like, intimidating things.’
Althea said that, during a phone conversation with the NDIA, she discovered they had failed to put Clarke’s autism diagnosis on his file.
‘I found out the global developmental delay was the only thing [on his file]. I said, “No, look.” I went through the documents in my phone still … [The NDIA staff member] added it to his file on the phone the same day.’
Althea said she’s ‘still waiting for the review to happen’. In the meantime, she’s homeschooling Clarke because he’s too anxious to leave home.
‘I'm worried that … we're not going to get the kind of help we need … in a situation that we're going to have to live in, with the homeschooling and the education.’
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.