Kieran and Ernie
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Ernie doesn’t want his son, Kieran, enrolled in school. He says Kieran doesn’t need maths and science, but ‘the best possible life’ his parents can give him. He feels the education department is standing in the way of this.
Kieran has a rare genetic disorder which results in global development delay, vision impairment and low muscle tone. He has epileptic fits, incontinence, gastric reflux, requires a feeding tube and has no independent mobility or ability to communicate.
Ernie says that only 50 per cent of children with this disorder live longer than 10 years and very few people reach the age of 20.
When Kieran turned 12, Ernie applied for an exemption from school. ‘I needed to make sure I had every aspect of [Kieran]'s health covered and the exemption would help me do this,’ he said.
Also Ernie’s trust in the principal and school had eroded over the years.
Four weeks after submitting the application to the director of education he was informed the exemption had been refused.
‘I was extremely disappointed but did not take it any further because I felt that it would require a battle that was doomed anyway.’
Ernie registered Kieran for homeschooling, and was shocked to discover the lack of support provided to parents who homeschool.
He also discovered the curriculum failed to address the needs of many children with cognitive and physical disabilities. He says the curriculum expects parents to work towards unachievable outcomes.
‘It's like asking someone with no legs to keep trying to walk – it's cruel to kids and to parents’.
Ernie decided to reapply for Kieran to be exempt from school. This time he applied directly to the education minister.
But the minister sent the application to the same director of education who had refused the first time. Ernie was never contacted and the application was again refused, the medical evidence dismissed.
‘She just sent me a letter saying it was declined, making reference to declining the application last year in such a way that it read like, “I told you last year, why are you bothering me again”.’
Ernie found it unbelievable there was no reference to what was best for Kieran.
Ernie has since been told to reapply for an exemption, this time to the executive director. But when he followed up on his application he was told it will take three months.
‘The education department are acting like they know what is better for my son than me or his doctors … The law should recognise medical practitioners over bureaucrats … This is an absolute abuse of power.’
‘I'm tired. I want to stop writing letters and emails and complaining about things that should be just common sense.’
Despite his medical conditions, Ernie describes Kieran as ‘a happy boy … oblivious to the challenges these issues bring to his life as he has never known life to be any other way’.
Ernie says it is the barriers he and his wife encounter in trying to give Kieran ‘the best life possible’ that impact him the most. They can be ‘so overwhelmingly exhausting’ and directly affect their ability to focus solely on Kieran’s needs.
‘People that don't live this life are making all the decisions for people that do.’
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.