‘What will happen to my child?’: The tough question families on NDIS want answered



The topic of children with autism is understandably sensitive. Families seek NDIS support as a last resort because there aren’t really other options.

Many have felt targeted and stigmatised by the narrative that has emerged about high levels of take-up among kids. Shorten acknowledged that on Thursday.

“There has been some unhelpful – at times stigmatising – commentary around children and adults with autism. This singling out is deeply unfair and distressing for people with autism – so, I want to speak directly to you,” he said, in comments welcomed by the sector.

“You are part of the disability community and you deserve better than unfounded gossip and needless anxiety.”

Shorten understands that people with a disability are wary of change, having fought hard for any gains, so he’s treading lightly. But people have been left to read between the lines and have come up with different answers.

For example, Martin Laverty, an original board member of the National Disability Insurance Agency who now heads disability provider Aruma, says it is inevitable existing participants will be graduated to the foundational support systems.

Laverty says families should be confident that the pathway they land on will be in their child’s best interests and nothing will change overnight. But Jim Mullan, the chief executive of autism organisation Amaze, says there is a strong expectation the changes and foundational support system will only apply to new participants.

Head of the non-profit Children and Young People with a Disability Australia, Skye Kakoschke-Moore, says she wouldn’t be surprised if families of children with autism felt they were still lacking clarity. “I wouldn’t blame them for that,” she said.

There are more questions to answer in what has otherwise been welcomed as an ambitious and inclusive reform plan.

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We don’t yet know what exactly “foundational supports” will look like, how they will link up with schools, or how states and federal authorities will divvy up the work. Nor how they will overcome existing workforce shortages in regional Australia, where NDIS take-up can be higher than in cities.

This new system is uncosted and nobody knows how many children could be diverted from joining the NDIS once automatic entry is scrapped.

Sam Bennett, head of the Grattan Institute’s new disability program, says those numbers are “hugely important, if you have a genuine intention of delivering a moderate growth target of 8 per cent by 2026”. But Shorten isn’t keen to answer that question, either.

“You say you want to know a number,” he said at the press club. “We haven’t modelled that. I don’t think that’s the right question, in all fairness.”

Unfortunately, there will be no escaping the numbers. Those figures – rising costs and unforeseen demand – are a key reason for the policy quagmire in the first place.

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