It cost $8000 to diagnose Frankie with autism but now we’re terrified he’ll lose his care – mum’s battle to keep her son in the NDIS
This family spent a fortune to get their autistic son Frankie the care he needs on the NDIS. Now they’re kept awake at night by fears he could be booted off the scheme.
Tracey and Nate Constable spent $8000 on a diagnosis for their son Frankie, 5, so he could access the NDIS.
Now Frankie, who has autism level two to three and a global developmental delay, faces the possibility he will be kicked off the scheme. He may be forced to moved on to Thriving Kids as part of the federal government’s overhaul of disability care.
Frankie was three when the Constables were advised to spend the money on a diagnosis in order to ensure their son was able to access an early intervention pathway to the NDIS.
He was put on a $44,000 annual package after initially being assessed for a $18,000 plan.
Frankie, who is at a special needs preschool, has speech therapy, occupational therapy, sees a psychologist and goes to a dietitian. He’s selectively verbal around people he feels safe with but also uses signs or a communication device.
“This is what he needs to get the best start,” his mother said. “If this stopped he would fall further and further behind.”
Ms Constable, from Perth, says her son is in the “grey area between the NDIS and Thriving Kids and is in danger of being bumped off”.
Thriving Kids is due to begin in July 2026 and is billed as making it “easier for families with children under 9 who have mild to moderate developmental delays or autism to get help earlier, without needing to go through the NDIS right away”.
Children with higher needs will still receive NDIS funding, but those with lower-level needs will begin a gradual translation to community care.
Such children will instead be channelled to “everyday services” through GPs, child health nurses, early learning centres, playgroups, and schools.
The Constables received a letter from Frankie’s therapy team advising them about Thriving Kids, but still don’t know if he will be moved across or not. The email was headed: “Exciting news” but the threat of a move off the NDIS is traumatic for Tracey and Nate.
“When you have kids with special needs, you must be able to plan for the future,” Ms Constable said.
“We are working so hard and I have had to change my life so much to get to this point and to think that Frankie wouldn’t be able to get the support he needs is heartbreaking.
“There are so many questions. It’s the uncertainty that keeps us awake at night. I know they think some children are overserviced but they don’t know my child. He is getting what he needs and on Thriving Kids he would get a lot less.”
Ms Constable said she had already reduced her hours but may have to stop working altogether.
“It’s so debilitating, worrying that my son won’t have the chance to be the best he can be,” she said.
“They don’t know my son. He’s a curious little boy and he loves to know how everything works. He loves numbers and lining up his toys and loves obstacle courses and he loves planes.
“Frankie has social anxiety so he needs one-on-one support – he can’t play with others. He struggles with social environments and there are only six boys in his class.
“Now it’s school holidays and he refuses to leave the house – he’s got autistic burnout and so the therapists come to him. All of this could come to an end for a program that hasn’t been built yet.”
The concern and worry felt by the Constables is mirrored by thousands of other parents around the country in the same situation who are supported by organisations such as the Australian Autism Alliance, the Disability Advocacy Network and Yellow Ladybugs.
Are you worried that your child could lose care if they are shifted to Thriving Kids? Leave a comment below or email us at education@news.com.au
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Originally published as It cost $8000 to diagnose Frankie with autism but now we’re terrified he’ll lose his care – mum’s battle to keep her son in the NDIS
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