Submission 252 — Mr David Edelman — Inquiry into the Thriving Kids initiative | External submission

Submission to the Inquiry into the Thriving Kids initiative

Dear Committee members,

This submission focusses on your Terms of Reference relating to identifying autistic children with ‘mild to moderate’ support needs.

While the Thriving Kids initiative is said to be for some children with autism and also children with development delay, my submission concentrates primarily on children with autism, as a father of a child with autism who is also an NDIS participant.

In his address to the National Press Club on 20 August 2025, Minister Butler said the threshold for eligibility to the Thriving Kids initiative is children with ‘mild to moderate’ levels of autism and development delay, who do not require individualised support packages provided through the NDIS. He also said that those children with higher needs would remain eligible for the NDIS scheme, presumably meaning children with more severe autism.

Naturally, the key consideration for the Committee – and for all families of autistic children – is what constitutes ‘mild to moderate’ autism.

Regrettably, Minister Butler did not define or explain in his National Press Club address what ‘mild to moderate’ autism is. Nor has he or Minister McAllister subsequently defined or explained it, despite being repeatedly asked to do so. It seems they prefer to avoid the question.

Perhaps one reason for this is that, prior to announcing the Thriving Kids initiative, Minister Butler did not receive any briefings from the National Disability Insurance Agency (NDIA) mentioning the phrase ‘mild’ and/or ‘moderate’ autism. We know this, because it has been confirmed by the agency’s Freedom of Information branch (see the relevant FOI document here). It appears that Ministers Butler and McAllister announced the Thriving Kids initiative without having any idea of what ‘mild to moderate’ autism actually is, simply invented this category, and now do not have the relevant information to explain what it is when they are asked about it.

Perhaps another reason is that ‘mild’ or ‘moderate’ autism are not clinical terms. Rather, the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition) categorises Autism Spectrum Disorder into three levels based on the severity of the individual’s need for support. These levels are:

Level 1: Requiring support
Level 2: Requiring substantial support, and
Level 3: Requiring very substantial support. Further, NDIS internal data (reproduced in the image below) indicates that there are proportionally very few autistic children currently on the scheme who have a ‘Level 1’

diagnosis. The overwhelming majority of them have been diagnosed as ‘Level 2’ (requiring substantial support) or ‘Level 3’ (requiring very substantial support):

The DSM-V Autism assessment is the predominant tool used to measure indis|

a participant with a primary disability of Autism’s level of function

Assessment Scores (participants aged 7 to 18) FY17-22

vel3 ml Other * There has been an increase

@ DSMA Level 1 YSMA Level 2 DSMA Le

in the percentage of 16% children with a level 2 29% 29% — Autism diagnosis.

| ae |

0 18 019 ) ) 021 2022

Graph based on new entrants to the Scheme All these children have been diagnosed by qualified medical practitioners, applying the DSM-5 criteria.

What this means is that very few children who are currently on the scheme under existing NDIS eligibility rules have ‘mild to moderate’ autism. Children with ‘Level 1’ diagnoses, who do not have ‘substantial’ or ‘very substantial’ support needs, generally do not meet existing eligibility requirements.

Conversely, children diagnosed with autism and who have ‘substantial’ and ‘very substantial’ support needs (Levels 2 and 3) are precisely the type of NDIS participants who the scheme was always intended for. There is no valid reason why this should not remain the case.

In the meantime, families are being scared witless that their children will not be able to access NDIS support into the future. The Government’s message is ambiguous, inconsistent, and threatening for autistic Australians. Clearly, it intends to move substantial numbers of autistic children off the NDIS, as the Ministers have been very adamant that the intent behind this initiative is to drive down scheme costs. But since the data shows there are very few NDIS children whose autism in ‘mild to moderate’, it follows that many of those to be moved off the NDIS will in fact be more severely autistic, as per their clinical diagnoses, and who will require substantially more supports than those to be offered by Thriving Kids. The fears are reasonable.

Without having a clear and transparent definition of ‘mild to moderate’ autism, an understanding of how this definition relates to DSM-5 diagnostic criteria, and how this definition also relates to current NDIS participant data, the Committee is simply not in an informed position to make its recommendations.

I therefore urge you to seek clear information from the Ministers for the NDIS, and/or the NDIA, as to:

what precise definition of ‘mild to moderate’ autism is going to be applied to the Thriving Kids initiative;
what precise definition of more severe autism will be applied to determine the children who remain eligible for the NDIS; and
how many/what proportion of autistic children who are current NDIS participants have ‘mild to moderate’ needs, and will no longer be eligible for the NDIS once the Thriving Kids initiative commences.

Yours sincerely,