Kostas, Lydia, Marko and Angie
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.
Angie is mum to two children with attention deficit hyperactivity disorder (ADHD). She told the Royal Commission there is not enough support or understanding of the condition.
‘There needs to be more acceptance that this is not a child who eats too much sugar, he will grow out of it or he is just bad. It is a neurological disorder that is lifelong … this is a vulnerable group that is more likely to end up in prison, substance abusers, dead or with broken relationships.’
The symptoms of ADHD for the two children – Kostas and Lydia – are quite different. The impact on Kostas, who also has autism, and on his family is severe.
‘He does not realise the impact of his lack of impulse control. He hardly eats and he is always on the go … Our lives from the day he was born have revolved around him … his needs always have to come first and he does not care about the collateral damage he does when he does his behaviours. It is so hard for all of us and him.’
Lydia’s symptoms are more mild and manageable, but she still needs support, particularly as she moves into adolescence. Lydia’s parents can’t afford to take her to an occupational therapist, but the NDIA won’t help because it doesn’t recognise ADHD as a disability.
‘Families need assistance to NDIS and more Medicare rebated appointments; 10 is not enough and we as families cannot afford it … no support and not enough psychology hours are affecting our vulnerable children.’
Angie also has a son called Marko, who has level 3 autism. He cannot toilet himself, feed himself properly or participate in social situations, but he does not qualify for an aide at school because his language skills have been measured at 1.7 deviations from the mean, rather than 2 deviations. ‘It should be a sliding scale, says Angie, ‘not a cut-off’.
‘He needs support and the teacher struggles to give him the attention he needs. They have to use another child’s full-time aide to assist him, when they can. He is only going to fall further behind. He needs an aide now to improve his chances of settling into school. We have been told the system is such that when [Marko] fails they will help him. But with autism the regression can take so much longer to come back.’
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.