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

There is a question that is still too difficult for Bill Shorten to answer.

It’s one that families across Australia who rely on the National Disability Insurance Scheme (NDIS) will be wondering this week after a major review of the scheme said that diagnoses alone would not guarantee access to individual support packages in the future.

Minister for the National Disability Insurance Scheme Bill Shorten with disability advocate Gretta Serov during a morning tea to mark the International Day of People with Disability last week.Credit: Alex Ellinghausen

What does this mean for my child? Will they be shifted onto the new disability system – the “foundational supports” that will be rolled out in schools and childcare – when the scheme arrives?

Shorten has had a significant victory this week: in a breakthrough deal signed by all the premiers, states promised to pay more for NDIS growth, placing them on the hook for future blowouts. And they won’t just pay more, they’ll do more. He’s won the praise of disability advocates and the confidence of a hard-to-please sector.

Reforming a complex and sensitive policy area like disability is no easy task, and Labor’s earliest advocate for the scheme has made it his mission.

Shorten’s earnest address at the National Press Club on Thursday earned several rounds of applause as he unveiled what will become NDIS 2.0. But he became frustrated when pressed on whether there would be any changes for the 235,000 children who are currently participants on the scheme with autism or developmental delay.

“I’m not going to say [whether I can] guarantee a particular individual is in or out. Because frankly I haven’t done the assessment of them,” he said in response to one question.

“What I can say, though, is if you have a significant and permanent disability which has quite an impact on your functioning, you will be in the scheme. If you have a developmental delay, which could be supported by another means of support other than an individual package, you’ll get what you need.”

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.

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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