Ros Thomas
The parents of a profoundly autistic child have warned that “more families will blow up” if the NDIS does not better support parents of children with high needs.
Laura Clarke, 52, and Simon Lewis, 49, whose youngest daughter Maddie, 16, has severe autism, told The Australian Weekend Magazine they had not seen an NDIS case worker in five years, “not since the day she entered the system”.
Last month, in the Perth beachside suburb of Mosman Park, friends of the Lewis family, Jarrod Clune and Maiwenna (Mai) Goasdoue, aged 50 and 49, killed their two severely autistic boys, Leon, 16, and Otis, 14, as they slept, before taking their own lives.
The family’s pets – two dogs and a cat – were also found dead at the scene.
A carer arrived at the scene to a note pinned to the front door: ‘Don’t come in. Call police.’
In the magazine article, Mr Lewis and Ms Clarke take readers inside their home to share the “hypervigilant” experience of caring for a child with extreme autism – who is often remote, unreadable, and unresponsive
“Try to imagine being confined day in, day out with a child who won’t sleep, won’t eat, who screams constantly, your other children are being neglected, and you’re completely and utterly shattered and have nothing left to give. Nothing.
“I fully understand what would have driven Jarrod and Mai to do what they did.
“Yes, it’s horrible because it’s murder, but I know where they were at. This will happen again and again.”
He said Mai had been “a brilliant, wonderful” woman, who held a Masters in Sociology
“She would’ve put her hand up and asked for help if that help had been available.”
Said Maddie’s mother, Ms Clarke: “If you turn up at hospital with your child and say you’re at breaking point, they’ll send you away. I know Mai called the police once to manage a situation with Leon being very violent and the police told her they wouldn’t come. Extreme autism kids get shafted from service to service because they’re so difficult to deal with. People have no idea how we live.”
This week, WA Police confirmed their active investigation into the double-murder suicide of the Clune family had come to an end and was now “under control of the Coroner”.
Disability Discrimination Commissioner Rosemary Kayess has called for an urgent coronial inquest into the Clune family tragedy.
“We must reject the idea that disability is a burden – every child has the right to life, safety and support, and families should have access to help well before crisis,” she said.
“There is never a justification for violence or murder.”