Autistic child's dangerous behaviours and family impact (Family or carer experience)

1 June 2026

Committee Secretary

Senate Standing Committees on Community Affairs

PO Box 6100

Parliament House

Canberra CT 2600

Dear Committee Secretary

Submission to Inquiry into the National Disability Insurance Scheme

Amendment (Securing the NDIS for Future Generations) Bill 2026

1. Executive Summary & Position Statement As a parent and carer of three autistic children who are National Disability Insurance Scheme (NDIS) participants, and having grown up alongside a close cousin with autism and an intellectual disability now living in Supported Independent Living, I have deep, lifelong experience with disability, the scheme, and with what life is like for disabled children and their families without it. I self-manage three NDIS plans for my children. The NDIS has been a vital lifeline, allowing my children to re-engage in school, make friends, communicate their needs more effectively, and develop critical self-care skills and safety awareness.

I do not support this Bill. I have grave concerns regarding the devastating impacts it will have on the lives of disabled Australians and their families if passed. I implore the Committee to vote against these proposed changes. These cuts will hurt vulnerable people, destroy lives, and fail to fix budget blowouts—instead, they will simply shuffle costs onto state health, Medicare, education, and justice portfolios at the expense of our community’s most vulnerable members.

On top of exposing disabled people to harm by stripping needed supports from the participants who will either be removed from the scheme or have their plans cut to fund far less than their actual disability-related needs, these changes will have a deeply detrimental impact on the lives of their carers – particularly women like me. It will entrench gender inequality and disadvantage for parent-carers and their children for years to come, and drastically increase caregiver strain leading to increased mental health problems.

2. Lived Experience: The Reality of “Moderate”

Autism

The government plans to target children with ‘mild to moderate’ autism for removal from the scheme, operating under the false assumption that caring for these children doesn’t require professional, personalised support. My family’s reality proves otherwise.

Even with NDIS support, we have spent tens of thousands of dollars privately on assessments, paediatricians, therapies, and sensory tools. The reality of caring for

multiple autistic children is not only financial strain, but also physical and mental health issues, reduced income and employment, and social isolation.

Case Study: My 8-Year-Old Daughter

My eight-year-old daughter has Level 2 autism, Pathological Demand Avoidance (PDA), ADHD, and severe anxiety. She is highly intelligent, communicates clearly most of the time, and attends school, but her true functional capacity tells a different story:

 Self-Care & Safety: Her self-care skills are comparable to a two-year-old and she regularly exhibits dangerous behaviours, such as opening car doors on the freeway at 100 km/h, running away when distressed, and stripping in public.  Severe Family Impacts: Autistic people have fluctuating capacity. When her capacity is low, my child experiences violent meltdowns from sunrise to bedtime. Our kitchen knives and scissors must be kept in a padlocked box because she has chased family members with them, threatening to kill us. She violently assaults her six-year-old brother regularly, once splitting his head open, requiring emergency department stitches. I have had to install locks on bedroom doors so my other children can protect themselves. She has had substantial periods of inability to attend school.

The Impact of NDIS Support

Before receiving NDIS funding two years ago, my family was in crisis. I had to significantly reduce my work hours to provide round-the-clock unpaid care. My daughter could not leave the house, and my husband and I seriously considered establishing two separate households just to keep our children safe. Our physical and mental health deteriorated significantly under the strain.

Through the NDIS, she now accesses regular occupational therapy, psychology, and support work. She is coping more often, but she requires non-stop support to function. If she and my two other autistic children lose funding, the consequences for our safety, dignity, education, and mental health will be catastrophic.

I’ve only mentioned one of my children above. My other two children are also level 2 autistic, with ADHD, PDA and anxiety. Except for when I am working, every waking moment of my life is dedicated to caring for my children, even with NDIS support. The caring load on me is far beyond what the average Australian mother has to take on.

As kids who will likely be exited from the scheme under the proposed changes, the direct impacts of these changes for my family will be:

My children will not be able to engage in therapy to build capacity; My children will experience skill regression including basic functioning like toileting, hygiene practices, sleep and food intake; My children will experience a decline in their mental health; My children’s dangerous behaviours, such as absconding, will increase;

My children and I will become socially isolated, and isolated from our informal supports like extended family; My children will be subject to more violence from each other; I will be subject to more violence from my children; Self-injurious behaviours will increase; My children will present to health services in crisis; My husband and I will need to separate; My children will return to school refusal and miss out on a formal education; I will have to quit my part time job and lose my income to care for and home school my children; I will not be able to afford my own necessary (self-funded) physical and mental health supports as a result; I will burn out, and my mental health and physical health will further decline resulting in my own disability; My daughter may end up on a pathway to involvement with the justice system; My children are unlikely to develop necessary life skills that will lead to employment as adults.

These are not exaggerated claims. These are the very real risks that have either already happened to us prior to receiving supports, or were flagged by professionals involved in my children’s care.

3. Key Legislative Concerns 3.1. Premature Transitions & Lack of Foundational Supports

The Bill seeks to exit people (many of whom will be children like mine) based on eligibility changes before state-based “foundational supports” exist. Exiting participants prior to these schemes being fully operational and accessible will cause untold harm.

 Pathways: There is no clear pathway for individuals unable to access state services due to regional location, extensive wait times, or the nature of their disability.  Inability to access other supports: Autistic children with PDA may fail the new eligibility test but remain unable to access school-based “Thriving Kids” supports because for a huge proportion of these children, their disability prevents them from attending school in the first place, or even leaving the house at all.  When my child’s capacity is low she is unable to access school-based or community-based programs, especially in groups. Even getting supports set up on a 1:1 basis through NDIS has been challenging; finding the right ‘fit’ with professionals who she can connect with in order to engage in therapy has been a slow and laboured process.  I know from experience that outside the NDIS, there is no help for kids like mine. Before we had access to the NDIS, in desperation we tried every service in the state, public and private. We faced a four-year waitlist for state child development services and a dire shortage of private professionals with closed books. We faced school staff who unwittingly made my child’s issues

worse because they did not have the skills or specific knowledge to engage her in the ways that worked. Government-provided parent programs such as “Triple P” gave inappropriate strategies and advice that actively made things worse for my child.

3.2. Draconian Eligibility Tests & The “Appropriate Treatments” Rule

(s 25A)

 Section 9B Functional Capacity Test: This test aims to exclude environmental and personal circumstances, creating an abstract context completely at odds with the social model of disability. It fails to mandate that assessment tools be evidence-based or properly administered. I am extremely worried about the new I-CAN tool, which cannot safely replace trusted medical professionals and will be traumatising for autistic children.  Section 25A (All Appropriate Treatments): This section requires participants to try “all appropriate treatments” first, even if they cannot access them due to financial barriers, regional shortages, or extreme wait times. A PDA child like mine would also not be able to engage with many services because success is deeply relationship-based, as mentioned above. Furthermore, “material improvement” is too widely defined. A severely disabled person could be disqualified for not pursuing a treatment that offers minimal, negligible improvement. This creates an exhausting, Kafkaesque barrier designed to make people give up.

3.3. Ministerial Powers, Funding Caps, and Eroding Choice (s 34A, s 45C)

 Blanket Powers: Sections 34A and 45C grant the Minister sweeping powers to discriminate against whole groups of participants by cutting funding without regard to individual needs and with no right of appeal. This invites public vilification, framing specific disability groups as a “burden on the public purse”. This change overtly legalises discrimination and breaches human rights conventions that Australia is obliged to comply with.  Funding Caps: Capping categories completely ignores individual needs. If applied to capacity-building supports like allied health, families will be forced to fund the shortfall because needs do not simply disappear. If passed, the government MUST expand Medicare-rebated allied health to offset this cost.  Section 34(1)AA: This section undoes the “whole-of-person” approach by requiring impairments to “directly” arise from an eligible diagnosis. This medicalises disability and ignores complex comorbidities. Disabled people are complex human beings, not a singular diagnosis. My children are on the NDIS for autism, but their PDA, anxiety and ADHD interacting with their autism is what makes life so intensely difficult for them. Anxiety and PDA are features of their autism and cannot neatly be separated out for exclusion.  Group Homes: The push to move more disabled people into shared group homes is an affront to human rights and choice and control, and it will directly lead to trauma, particularly for women. The fear in the disabled community is so great it is leading to rising conversations around voluntary assisted dying due to absolute despair among participants.

3.4. Automated Decision Making (ADM) & Administrative Harms

 ADM (s 45, 45A): Pushing automated planning into the scheme risks replicating “Robodebt-style” harms with horrific outcomes for individuals. ADM has absolutely no place in a scheme so deeply intertwined with life-or death supports for vulnerable Australians. This applies across all of the scheme including access, planning, claiming, and debts and penalties.  Removing access to meaningful administrative review of automated planning decisions raises the risk exponentially and goes against common sense and research-based recommendations on the issue.  Even aside from the raised stakes caused by automation, removing rights of review creates a discriminatory situation where disabled people have less access to justice and basic rights than other Australian who are afforded procedural fairness and access to administrative review for other government decision making. This is utterly unjustifiable.  Extended Timeframes (s 20(2)): Extending the access decision window from 21 to 90 days is far too long for families in crisis. My children waited many months for access decisions, nearly a year in my daughter’s case, despite the current 21 day limit. I dread to think what the real wait times will blow out to with the official window stretching to 90 days.  Shortened Claim Windows (s 45A(5)(a)): Reducing the claim window from 2 years to 90 days is punitive. Self-managing families are already juggling disability care and saving the government plan-management fees—they need a reasonable timeframe to complete administration.  Plan Suspensions (s 40A, 31A): Allowing plans to be suspended or revoked after undefined “reasonable attempts” to contact a participant is dangerous. A 3-month window to reassess a plan due to unexpected changes with no right of appeal to the Australian Review Tribunal (ART) will cause literal deaths.  I wish also to point out that extending access timeframes, shortening claim windows and suspending participants will make life significantly harder for disabled people already struggling while having absolutely no bearing on the cost of the scheme nor the supposed ‘fraud’ problem. These changes are overreach and have no discernable link to the government’s narrative surrounding these scheme changes.

3.5. Parental Responsibility, Carer Burnout, and Gender Inequality (s

34(1G)-(1J))

The Bill introduces a strict presumption that parents must provide “substantial care and support” and prohibits funding that reduces the burden on parental time below what is “reasonably expected”. This is not defined by reference to the reasonable expectations of a parent caring for a non-disabled child, as it should be.

 This completely ignores intersectional realities. What is “reasonable” when a parent is caring for three highly complex disabled children simultaneously – as is my situation? Or if the parent has a disability or chronic health condition themselves? Factors such as these should be given consideration, given they directly impact the quantity, nature and quality of the actual care the disabled child is receiving from that parent.

 Providing the NDIA’s expected level of care to multiple disabled children is physically impossible. It leads to severe burnout and blocks workforce participation. Given that the vast majority of primary parent carers are women, this clause actively entrenches structural gender inequality.  Caregiver burden is a serious problem that has been directly linked to negative mental health outcomes and even suicide. Mental health problems among caregivers are an established risk factor for neglect and abuse for children. In our community this year we have seen four autistic children murdered by their parents in situations where it seems clear the caregiver’s failing mental health has been a factor. To keep disabled children in our community safe, it is imperative that the government does not pass laws expressly requiring their caregivers to be pushed into burnout and incapacity. The changes as written can only lead to worse outcomes for our children.

3.6. Disproportionate Penalties and Debts (s 80(5), s 45B, s 182)

The bill introduces harsh civil penalties for nominees and automatic debts for participants/carers who make administrative mistakes, with no mechanism for the Minister to waive them. As unpaid carers we are saving the government billions per year in disability care, at great cost to our own health, wellbeing and financial security. Saddling unpaid, exhausted loved ones with massive financial penalties for losing paperwork is entirely disproportionate and unnecessarily punitive.

4. Recommendations for Amendment If the Bill is not rejected outright, it must be radically amended to include the following safeguards:

5. Delay Implementation: Halt the Bill until state-based foundational supports are fully established, functioning, and universally accessible.

6. Rein in Transitional Rules (Schedule 5): Narrow the Minister’s powers to make transitional rules by enforcing strict time limits, restricting scope, mandating disability community consultation, and requiring a comprehensive impact assessment.

7. Remove the ability for the NDIA to use ADM – this is dangerous and inappropriate for use within this scheme.

8. Restore Rights of Review: Mandate a comprehensive right of review to the ART for all NDIA decisions, including plans, plan suspensions, debt notices, and changes due to unexpected circumstances.

9. Amend Section 25A: Explicitly state that financial limitations, regional wait times, factors emerging from the disability itself, and a lack of local professionals constitute valid exemptions to the “all appropriate treatments” rule. Define “material improvement” strictly as substantial, not merely “noticeable”.

10. Remove or Amend Penalty Clauses: Eliminate civil penalties for nominees acting in good faith. Introduce a mechanism to waive debts where a participant or carer took reasonable steps to comply or was otherwise entitled to the support.

7. Expand Scope of Safety: Ensure that “safety” considerations under Section 34C expressly include psychosocial safety.

8. Relax Administrative Windows: Retain a reasonable claim window for self- managed participants rather than cutting it to 90 days.

9. Expand access to Medicare rebates for families to access private allied health therapies for their disabled children. Five sessions per year under a chronic condition management plan is not enough. If families had proper access to these supports in the first place, many would not bother with the expensive and exhausting process of seeking NDIS supports in the first place.

10. Conclusion The needs of 160,000 (or more) disabled Australians will not vanish from the budget simply because a piece of legislation passes. If the government removes our access to crucial therapies, the financial and social costs will simply compound across our healthcare, welfare, education, and justice systems.

Please listen to disabled Australians and their families.

This Bill has been rushed and it is replete with drafting errors. It confers on the Minister powers which are unjustifiably, insufficiently confined. Even if it not the current intention, under a future Minister, these powers will allow for the absolute destruction of the NDIS and untold harms to be done to disabled people by the government.

Consultation on this Bill has been offensively limited with submission windows to this inquiry far too short.

Please, do not pass this bill in its current form.

Western Australia