Roddy and Carol-Ann
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.
‘The system and the NDIS Act is built in such a way that if you can't see an illness, the illness is frankly not there [and] you are made to feel blamed as a parent and guilty as a parent that you're not doing enough.’
Carol-Ann lives in a regional city. Her son Roddy is autistic and has attention deficit hyperactivity disorder (ADHD).
’He enjoys computer games. He has an extremely dry sense of humour and personality,’ Carol-Ann told the Royal Commission. ‘He's very smart. Very, very intelligent.’
Carol-Ann said Roddy was ‘always an incredibly difficult baby’.
‘From the get-go I advocated for [Roddy] to get the supports … Unfortunately, the services are simply not available here to actually get the allied health professionals, the medical professionals, the psychologists, the psychiatrists, all of those people to chronologically assess [Roddy] to get a diagnosis.’
Roddy’s paediatrician diagnosed Roddy with ADHD, but refused to diagnose autism, despite his behaviour.
‘I would write her emails to say that he's run out on the road. That he was threatening self-harm. And she would tell me that he simply, from her observations, has ADHD.’
An NDIS early intervention scheme funded medical reports for Roddy, but until a doctor diagnosed him he wasn’t eligible for support at school or home. Roddy’s mainstream school kept sending him home.
‘He's smashing up the place. He smashed up a car. He's melting down. He's in a classroom taking plaster off the walls. He's screaming, beside himself with anxiety … It's scary for the people who don't know what a meltdown looks like.’
Carol-Ann and her husband separated and she changed jobs, which ‘had a massive impact’ on her mental health. A local school specialising in autistic kids wouldn’t take him until he had an autism diagnosis.
One day, when Roddy threatened to kill himself rather that return to school, Carol-Ann took him to the hospital emergency department. A doctor told her the problem was ‘parenting dysfunction’ and tried to discharge Roddy.
‘I kind of felt that at every juncture … we were made to feel like we were bad parents.’
Carol-Ann refused to leave and after several hours, during which Roddy ‘smashed the entire room’, the doctors could ‘no longer deny his behaviour’. A new paediatrician diagnosed autism.
But Carol-Ann still struggled to get appropriate support from the NDIS.
‘I was told that I need to assume parental responsibility and that if we have a crisis I should call the police.’
Roddy’s funding ‘didn’t even cover the OT [occupation therapist]’, so Carol-Ann went to the Administrative Appeals Tribunal.
‘I found it difficult to keep my head above water … At the end of the day, even I found it incredibly challenging, and I know how to read the law. It is a complete and inherent systemic neglect for all those other children that have a disability in Australia when faced with this issue.’
The NDIA eventually approved a plan that gives Roddy access to therapy and respite, but Carol-Ann said it’s ‘too little too late’.
‘We needed the support two years ago.’
Roddy now lives mainly with his father because Roddy ‘would meltdown with me and he would punch me’.
‘It's damaged my life … I no longer have care of my child because the [early] intervention was lacking despite our continued advocation for him 24 to 36 months prior … My life has been damaged, irreparably damaged, because I'm never going to get this time back with my child.’
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.