Macey and Netta
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.
Macey has a rare genetic syndrome. She is non-verbal, uses a feeding tube, has global development delay, vision impairment and a heart condition. She requires support with her gross and fine motor skills and is unable to walk long distances.
A few years ago Macey’s mum, Netta, enrolled her in a state government preschool program.
Macey’s classroom was full of small objects for the children to explore.
Netta was concerned Macey would put the objects in her mouth. She told the Royal Commission that she wanted her placed in a smaller, younger group with more supervision.
The teachers said Macey had to be with children her own age and reassured Netta that the education aide would watch her.
In the short time Macey was at the centre, she swallowed several items every day.
One day she was playing with the dinosaurs and swallowed a rock.
‘She got the rock stuck in the food pipe, luckily not in the windpipe, but required surgery.’
Macey was in hospital for a week.
Netta discovered the aide who was supposed to be supporting Macey supported the whole class and only worked one hour a day.
‘How is it possible that a child with lots of disabilities, with a PEG feeding tube, was only given one hour a day?’ Netta asked.
‘I left my child in a safe place, that is supposed to be helping her and protecting her, and I got there with three ambulances out the front, trying to take something out of her mouth.’
Netta had to quit her job and stay home for a year until Macey was eligible for school.
During that time, Macey couldn’t access therapy or support because her syndrome was so rare the state disability program didn’t recognise it.
Netta hoped things would be better once the NDIS was rolled out in their area.
‘Now that NDIS is finally here … [Macey] is still not receiving enough therapy, enough care hours. Everything falls under parental responsibilities. However they don't look at the bigger picture. I am a single mum. I don't have any family here … If I don't work, I am not able to feed my family.’
Macey receives one hour of support five days a week.
‘She is not independent for anything. She is not able to eat for herself. She is not able to dress by herself. [Macey] is non-verbal … If she hurts herself, she cannot tell me. I have to be there. I have to look at her all the time.’
Netta has tried to find after-school care programs and school holiday programs for Macey, but the waiting list is too long.
‘I can't divide myself into two people.’
Netta said the support workers are very good. They have taught Macey to sign and she is able to communicate her needs.
When she goes to school or out into the community, however, most people can’t understand her. Netta believes sign language should be taught in all mainstream schools.
‘This not only helps to include those who doesn't have a choice, but helps kids when they feel so overwhelmed by things that they don't want to talk.’
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.