Emilee and Kenia
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.
Emilee, in her late teens, has cerebral palsy and developmental delays. These were first diagnosed when she was about eight. Her mother Kenia told the Royal Commission that getting the diagnosis was difficult.
‘You go and have to fight to get a diagnosis that there is something wrong with your child. It’s absolutely unguided, unstructured, it’s enormous, you never know if you’re doing enough,’ she said.
‘There was no-one out there that sort of would put a framework to it. It was go to a bit of OT, go to a bit of speech therapy … So I stepped out, looked after my own child.’
Kenia left her job and became Emilee’s carer, doing therapy with her for up to five hours a day.
She said seeking a diagnosis for Emilee and trying to locate advice for how best to help her alerted her to the need for information in a single easily accessible place.
‘My primary issue is there’s no roadmap that a parent can use to get an understanding of what their journey might look like with a best practice or at least baselines,’ she said.
Kenia would like to see better information sharing and opportunities for social connection occurring at the local community level, through government-supported models that recognise the expertise and insights of parents.
‘The answer is to define a roadmap that is far more bulletproof and has more checks and balances,’ she said. ‘[And] get it into communities so that parents can find each other, share their roadmaps.’
She believes funds are squandered through programs like the NDIS, and there are insufficient protections and safeguards for the private information people share with service providers and other agencies.
‘We need to start giving people – what’s the word – consent over the use of that data. And we need to be able to educate them and protect them in that use of their data.’
Emilee attends mainstream schooling, but both she and her mother ‘feel isolated’ in this setting. Emilee takes antidepressants to help her cope.
‘You know, you go to the school … you put a tennis club together, you put a netball club together. They don’t have a disability club … So, it needs to get to that level. There’s inclusive, but there’s also building up and socialising a community without exclusion,’ Kenia said.
She described different initiatives she had organised at Emilee’s primary school, such as bringing occupational and speech therapists in for day-long sessions to work with students with disability. Though popular, this program was ‘taken apart’ when Emilee left.
‘There’s a thousand little cuts that happen every single day to me and my child … I can name you hundreds of experiences where – and I just ran out of fight.’
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.