‘NDIS isn’t a luxury, it’s a lifeline’: Parents hit back at autism funding plan
Dr Kristyn Sommer first learnt she might be autistic in her late 20s, about a year after the birth of her first child.
The Gold Coast mother had self-diagnosed postpartum depression, but then a question from the psychiatrist changed her life: “She looked at me and said, ‘Has anyone ever said you’re autistic?’”
That revolutionary diagnosis has weighed on Sommer’s mind this week after the federal government revealed thousands of children with autism or developmental delay will be diverted from the NDIS onto a new system called Thriving Kids from mid-2027.
Gold Coast mother and childhood development expert Dr Kristyn Sommer was late diagnosed autistic, aged 27. Credit: Dr Kristyn Sommer
Federal health and disability minister Mark Butler announced the changes on Wednesday, telling the National Press Club “children with mild to moderate levels of developmental delay and autism should not, in my view, be on a scheme set up for permanent disability”.
“Only around one in 50 people have significant and permanent disability, hence the need for a bespoke scheme like the NDIS,” he said.
“But 10 in 50 young children experience developmental delay or autism – mostly at mild to moderate levels.
“That’s a broad-based, mainstream issue that should be supported by broad-based, mainstream services.”
Sommer has a PhD in developmental psychology and recently navigated early intervention supports through the NDIS for one of her children. She says Butler’s comments are reductive and play into stereotypes that don’t reflect lived experience.
“I’m mildly autistic … and based on that language, he doesn’t believe that I have a lifelong permanent disability.”
Griffith University clinical psychologist and former president of the Australasian Society for Autism Research Dr Jessica Paynter agrees.
“Autism is a lifelong neurodevelopmental disability,” she says.
“The use of terms like mild or low are quite outdated, and many people feel very stigmatised by that language because we know that support needs can fluctuate … [and those needs] are how we should frame it.”
Disability advocate Niti Prakash has a child with multiple disabilities. She’s not opposed to another program, but was disappointed in the way it was communicated.
“The problem is making a public announcement with no details. No framework. No funding model. Just a headline that instantly sends parents into panic mode,” Prakash says.
“Of course families are stressed. Of course uncertainty spreads. That’s the predictable outcome of dropping a half-formed plan into the public arena.
“Parents deserve clarity, not confusion.”
Minister for Health, Disability and Ageing and Minister for the NDIS Mark Butler.Credit: Dominic Lorrimer
Disability support worker Anita Perrotta’s nine-year-old son has level 2 autism, ADHD, dysgraphia, and a learning disability. She says he only started receiving NDIS supports a few months ago, and is worried it could now be taken away.
“Therapies funded through the NDIS have helped him grow in ways I never thought possible,” she says.
“It makes me incredibly upset and angry to think that the ASD community is at risk of being pushed aside. For children like my son, NDIS isn’t a luxury, it’s a lifeline.”
Brisbane speech pathologist Rhiannon Harrison penned a five-page letter to the health minister detailing her distress.
“Today I can’t focus because I keep seeing the faces of the children I love so dearly floating in my head. I am terrified of what these changes will mean for them and their futures,” she wrote less than 24 hours after the announcement.
“[The] parents [of the children I treat] along with about 294,000 others are scared too … We know that the NDIS isn’t the right system for our kids, but it’s the only one we’ve got, and the only one that has come even remotely close to meeting each and every child’s individual needs.”
Paynter fears the change will undo decades of progress to improve supports for autistic children.
“Before the NDIS, there was the Helping Children with Autism (HCWA) scheme,” she said
“Under that package, families got up to $8000 per year to support the needs of their young autistic child [for two years].
“That was a massive change from what came before that, where many families … might have only got an hour or half an hour per fortnight with an allied health professional.”
Sommer doesn’t regret that her diagnosis was missed in early childhood – “I had an exceptional [and supportive] mother,” she says – but in hindsight she sees where she could have benefited, and is determined to ensure her children get the supports they may need.
“I have still experienced extraordinary levels of anxiety and trauma and inability to navigate the world successfully in many ways,” she says.
“If I’d had early intervention, which is what the NDIS offers for children, my life would have looked quite different.
“My kids will be fine because they have a mother who has an autistic brain, and who has dedicated their life to understanding one and developmental psychology … but it’s really hard for vulnerable parents.”
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