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Madden, Silver and Alen

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.

Madden is 11 and has Down syndrome. His hearing and sight are impaired and he has an auditory processing disorder, working memory and executive functioning issues and fine and gross motor skills delays.

Silver, his mother, said it helps to think of these as separate issues.

‘Even though he's got the Down syndrome disability, I guess what we have worked out is if we break them down we can work out how to address each of those concerns.’

Madden went to a mainstream kindergarten and is now at a mainstream private primary school.

‘We believe mainstream schooling is the best environment for [Madden],’ said Alen.

In theory, he said, he and Silver agree with expert advice that says children with disability ‘are best served by attending mainstream school and it also provides benefits for their peers at that school’. But in practice, ‘the systems aren't there to support a child like [Madden] at mainstream schools’.

They are happy with Madden’s social experience at the school.

‘We're very lucky the school he goes to is quite a nice community,’ Alen said. ‘The kids there keep an eye out for him generally. Yeah, he hasn't been bullied or anything like that. So that, that's been a positive … that all the other kids there really look after him.’

But Madden’s educational experience has been a mixed bag. His parents have observed that there is a lot of educational policy that talks about the inclusion of children with disability – using language like ‘address the child's needs,’ ‘modify’ or ‘adjust, ‘collaborate with parents’. But the reality does not match the rhetoric.

‘This is not effective and is either not happening, half-heartedly happening, disregarded, ignored or something put in place regardless of whether it is really addressing the child's needs or not.’

Silver told the Royal Commission that in Madden’s prep year he had a teacher who was ‘really good’.

‘She included us, she found out … what impairments, you know, [Madden] had, what his struggles were and she put things in place for that.’

Other teachers are not so open.

‘We’ve proposed a lot of things to the school to help [Madden], and quite often that's just disregarded,’ she said.

‘Just about every year we go in there and say, “He learns by repetition.” You know, there's the slow talking, he learns through videos, he learns through all the things we've worked out to address the needs. And what happens is [the teachers] don't really adjust … I think the expectation is for him to listen, learn and be able to do it. I think the amount of time that he gets to process and be able to learn is very minimal. It's the same as everybody else, and then they're moving on … With his disability, that's not achievable.’

Silver and Alen described some of the teaching tools they successfully use with Madden at home, including assistive technology that Silver has adapted to meet Madden’s needs. They would like to see such technologies adopted by schools, with support teachers trained to customise programs for individual students.

‘There's never been a strategy for teaching [Madden]. Obviously [Madden’s] different to your typical child but I've never seen anyone sort of come up with an approach, “How, how are we going to modify what [Madden] has to learn?” We've never really had that.’

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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.