Mary-Lou, Pedro and Georgette
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.
Georgette is mother to two autistic children under the age of 12, Pedro and Mary-Lou. Both have NDIS funding, but Mary-Lou’s plan was reduced by half in 2021. This left her without vital supports just as she was starting back at school.
‘We had just had my son's review and he'd got this wonderful package. I'm like, “Beauty, yes, he's getting great support,”’ Georgette told the Royal Commission. ‘And when we got her report back, I just kind of looked at it and go, “What? You're kidding me.” And I pretty much like burst into tears. And I'm just like racking my brain as to why her funding was cut.’
Mary-Lou has higher needs than Pedro because she has level 2 autism.
‘He's level 1, so he's more functioning … I feel like their plans need to be the other way around.’
Mary-Lou needs more speech therapy and respite care but the new plan overlooked that.
‘We'd gotten reports from all her specialists, recommending all the things that she needed. Because she's missed out on two years of schooling. She started school in 2020 when the pandemic hit … When we got her report back, I'm just like, 'What? Did they even read any of the information?'
The cuts to Mary-Lou’s plan followed a ‘phone consult’ and relied on ‘cookie cutter’ decisions and outdated information.
‘What I want to see is more of that face-to-face contact rather than over the phone … because I feel like they don't believe you sometimes, especially after her last review.’
Georgette feels it comes down to the luck of the draw. Pedro has a support coordinator.
‘Which has been the most useless thing to have on his plan. She's done absolutely nothing to help us find supports.’
Nonetheless he’s got a good support worker, which has made a remarkable difference in the standard of care he receives.
‘But no-one's really telling me how to go about getting a support worker for [Mary-Lou]. And I'm watching this 8-year-old hate school and hate life, because she doesn't have those supports there.’
Georgette fears this is setting Mary-Lou up for failure.
‘If she was given access to all these things, she wouldn't be such a burden on the general population as she gets older … You don't want them to be reliant on, you know, government payments. You want them to be able to get a job and have friends.’
Mary-Lou is having more meltdowns due to the stress at school. Georgette recently got a glimpse of the benefits of more outside-school supports for her, when she went on a camp.
‘I spent the whole weekend on the edge of my seat going, “Am I gonna get a phone call?” But she had an absolute ball. And it's good to see the smiles back on their faces after missing out on so much. And just neurodiverse children being able to have those experiences and being supported in those experiences.’
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.