Submission 2770

Submission to: NDIS Amendment (“Securing the future for NDIS”) Bill

June 29, 2026 From a PDA autism Group

Introduction

Thank you for the opportunity to feedback on the proposed changes to the NDIS.

We are a support group for parents of children with PDA and adults with PDA.

Pathological Demand Avoidance (PDA) is considered to be a profile of autism. However, it is one that involves some different traits to non-PDA autism, bringing with it some unique challenges – including that the majority of children with PDA are unable to attend school long term.

We have multiple concerns with this NDIS Amendment Bill, as detailed below, and ask that the Bill be reconsidered as it will cause harm to people with disabilities and their families.

Group poll on key concerns

A poll completed by group members showed that the some of the key concerns of the group, in descending order of concern at the time of writing, included:

1. Eligibility reassessments / Many people being removed from NDIS.
1. NDIA using algorithms for planning / risk of these underestimating support needs.
1. Tightening of the term “parental responsibility” / making it harder for children to have support work funded.
1. Changes to functional capacity definitions and having NDIA, not private therapists, assess function.
1. The Minister being able to make broad cuts, e.g. cutting everyone’s social and community support funding by 50%, and therapy by 10%.
1. Huge changes proposed with little time to give feedback.
1. Humans not being able to over-ride automated planning decisions, even at tribunal.
1. Making it harder to get a Change of Circumstances request approved.
1. Lack of co-design with participants / nominees / child representatives.
1. Making it harder for new applicants to access (join) the NDIS.
1. Dividing participants into 6 different “classes” or “impairment categories” based on diagnosis.

Themes

Multiple group members expressed that ALL of the above issues concern them, and added comments regarding their own situation.

1. NDIS funding being reduced or removed means higher costs for parents, which causes financial strain and is unaffordable for parents on a low income.

Parents noted that the less funding that NDIS provides for supports for children, the more cost that falls to parents – and that this is often unaffordable, particularly for single parents and/or households where caring responsibilities have impacted the parent’s ability to work.

For example, one group member commented: “The most consistent thing we have used our funding for is access to social groups for autistic kids, so significantly reducing that amount would really affect us. Also, being a solo parent unable to work due to caring responsibilities, I do not have capacity to take on any more costs if they decide that therapies and social access falls under ‘parental responsibility’.

Please note that it is very common for parents of children with the PDA profile to received limited income because they are unable to work, or have a significantly reduced ability to work. One reason for this is that the majority of children with PDA are not being able to cope in the school system long term, with 70-85% ultimately moving to home education - usually by necessity rather than parental choice, after prolonged difficulties with the child attending school for various reasons (e.g. nervous system burnout, repeated losses of autonomy, sensory overwhelm, bullying, other social issues, depression/anxiety), and generally after the family, school and therapists have trialled and ruled out other options first (e.g. different classroom strategies, changing to a different school).

2. Loss of support worker funding for children means parents of autistic children are often

stretched beyond capacity.

NDIS has been reducing the frequency and amount of support worker funding for children on the NDIS for a number of years now. NDIA often deny families support worker funding by saying that care for their children is “parental responsibility”, however this ignores other factors that they should be considering as per the NDIS Act 2013, including:

Whether, because of disability, the child has substantially greater care needs than other children of the same age.
The extent to which there are risks to wellbeing of the child’s family carers.
Whether the support will increase the current or future functional capacity of the child, or reduce risk to the child’s wellbeing.

One group member, Kylie, stated:

“The ‘parental responsibility’ term is sad at best and completely ignorant at worst. Parents are stretched beyond capacity. I’ve two older children who are constantly impacted by the needs of our PDA child every. single. day. Yet I’m expected to manage … our PDA child (without help at home) as well as our other children, and work, and maintain a marriage, a household, and the NDIS. It is NOT realistic.”

3. High risk of substantial parental stress and burnout.

Another parent shared:

“I have two children with PDA, one who attends school and one who has moved to homeschooling. It is difficult to juggle working from home, home schooling one child, providing the extra care my kids need because of their PDA, travelling to/from therapy clinics, attending to frequent school phone calls, emails, and meetings, and the admin involved in self-managing both children’s NDIS plans - on top of all the duties that parents usually perform, like school pick up/drop off, cooking, cleaning, etc. There have been times when both the kids and parents have been in prolonged burnout, impacting family relationships, sleep patterns (insomnia), my ability to concentrate and keep up with work, and

Submission 2770

“We just feel like we’re behind on everything, all the time and can never catch a breath.”

Research shows that children with autism generally require substantially more care than children without autism¹, to the tune of several hours per day on average², and much more in some cases. This impacts the parents’ wellbeing, stress levels, quality of life, and time for other activities including work and leisure (especially for the primary caregiver, which is the mother in 93% of cases).

Parents of children with autism are at higher risk of high levels of burnout compared to other parents^3,4. I believe this would be higher again for some parent sub groups, including parents of children with PDA autism, and parents of children with level 3 autism (the most severe level).

4. Lack of recognition regarding the substantial support needs of children with level 2 autism.

Over the past 3 years, we have seen a plethora of news articles with quotes from NDIS Ministers who have said that there are a lot of children on the scheme with “mild to moderate autism”, and implied that the prevalence of autism means the need can’t be met. However, some 70% of children with autism who are on the NDIS have level 2 autism, with most of the remainder having level 3 autism (as children with level 1 often don’t gain access to NDIS).

I wish to clarify for the reader that level 2 autism is NOT defined as “moderate autism”. Rather, it is defined, in the DSM5 (the manual that defines diagnostic criteria) as people with “substantial support needs” – very similar wording to “significant functional impairment” which is one of the main eligibility criteria for the NDIS.

5. Concerns about lack of details regarding “Thriving Kids” and whether it will meet the needs of families, including home educated children.

I would also like to note briefly, that we have still not received any details regarding how “Thriving Kids” will be operated in our region, despite the high risk of children with autism being kicked off the NDIS.

A parent noted “If we use Bill Shorten’s analogy about NDIS being ‘the only lifeboat in the sea’ – we are now seeing children being thrown into the water when there are still no other lifeboats in sight.”

We note that the funding available for Thriving Kids will be many times less than the funding available through NDIS, when looked at per capita, therefore access to therapy is likely to be stretched thin. Workforce issues will also have a major impact, if small providers are unable to be funded.

We also note that we still have not received any reassurance regarding whether children who home educate (some 46,000+ Australian children) rather than attend school will have access to therapy. Home schooling rates have doubled in recent years, and the majority of home schoolers are neurodivergent children who have not had their needs met well by the school system, to the extent

¹ Reasonable+and+necessary+support+across+the+lifespan+-+an+ordinary+life+for+people+with+disability.pdf ² Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children - Davy - 2024 - Autism Research - Wiley Online Library ³ Frontiers | Latent profile analysis of parental burnout among parents of children with and without autism spectrum disorder ⁴ The Relationship between Parenting Stress and Parenting Burnout in Parents of Children with Autism: The Chain Mediating Role of Social Support and Coping Strategies - ScienceDirect

Feedback regarding the NDIS Amendment Bill

The functional capacity definition

The proposed definition assesses what a person can do without support, without assistive technology, and without considering environment.
For fluctuating, context-dependent capacity, this will produce the wrong answer every time. Masking and less ‘typical’ autism presentations (PDA) are already not well understood, but will place this cohort at greater risk of falling through the gaps.
Children not able to attend school will not be assessed to show the severe impact of their functional capacity. ‘School can’t’ will be viewed as a gap in evidence rather than evidence of severe functional impairment. This is already the case, but it will now be difficult to provide evidence to support this.
Currently, participants rely on clinicians skilled in identifying traits like masking or less typical profiles; however, the revised definition implies the NDIS won’t rely on evidence from sources such as allied health professionals.
The effect of the definition will further exclude the cohort that is hardest to assess.

Automated decision-making

An algorithm cannot detect masking or account for post-assessment burn out.
Automated decision making cannot replace clinical judgement and reasoning. This is complex, and the aged care reforms have shown how this fails those with complex profiles.
Removing human clinical judgement from these decisions will cause harm and further disadvantage to the most complex cases.

Section 34A

Many families have already been through multiple rounds of refusal of support. So they are already left with the minimum support.
For children/families in crisis and holding it together, they have no capacity to absorb any more reduction.
This section allows circular reasoning already applied in planning decisions to be strengthened. For example, the reasoning about what is reasonable parental responsibility and the over reliance on informal support.