Autistic family faces violence risk due to reduced support (Family or carer experience)

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

SUBMISSION TO THE SENATE COMMUNITY AFFAIRS

LEGISLATION COMMITTEE

Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submitted by:

Roles: Donation Specialist Nursing Coordinator; Online Learning Advisor

Date: 23rd May 2026 Contact: NDIS Participant Reference:

1. Introduction I am writing to express my strong objection to the proposed NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026, and in particular to the proposed 50% reduction in Social, Civic and Community Participation support budgets, tightened eligibility criteria, and the introduction of a financial sustainability clause that places fiscal considerations above the needs of individuals with disability.

I submit this as a sole parent, a senior registered nurse, and an Autistic person raising two Autistic children. Our family’s hard-won stability has been built directly on the foundation of NDIS support worker funding. The proposed changes threaten to dismantle that stability entirely — with consequences that will extend well beyond my family, into the healthcare system and onto the public purse.

I ask the Committee to read this submission not as a list of problems, but as an account of what is possible when disabled people are adequately supported — and what is lost when they are not.

2. About Our Family Our family is made up of three people, all of whom are Autistic with a Pervasive Drive for Autonomy (PDA) profile, and ADHD. PDA is a distinct profile within the Autistic neurotype characterised by a neurologically driven need for autonomy and to avoid demands and expectations. It is not a behaviour choice or a parenting failure — it is an innate part of how our nervous systems are wired. Supports that work for other Autistic people frequently do not work for us, and this must be understood in the context of any discussion about our care needs.

Senior Donation Specialist Nursing Coordinator (Registered

Nurse) - working to facilitate organ and tissue donation for transplantation – directly influencing saving lives. Autistic, ADHD, PDA profile. Sole parent with no co-parent, no

| Senate Submission | May 2026                                         Page 1

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

family supports, and no safety net. I am responsible for every aspect of my children’s care, safety, and development.

NDIS participant                     . Autistic, ADHD, PDA profile.        disability

involves significant executive function differences, impulsivity creating safety risks, sensory seeking and avoiding behaviours, and high support needs for daily regulation and community participation. exhibits extreme violence when he becomes dysregulated, which is directed predominantly at his mum and sister, but has also transversed to the support workers, and school and social environments. He is frequently destructive – breaking windows, doors and walls within the home environment. He has threatened to kill both mum and sister on numerous occasions, and has obtained knives with the intent to harm. Due to these behaviours, our home requires ongoing safety modifications: bedroom doors with locks so that and mum have a safe space to retreat to during violent episodes; locked cupboards to prevent access to sharp and dangerous objects; and shatterproof double-glazed windows, installed after threw bricks and chairs at windows during episodes of dysregulation. bites with a lock-jaw grip that does not release, kicks holes in walls, and has scratched obscenities into doors. Most recently, this year I woke to attempting to choke me, saying “any last words” — an incident he later described as a joke, but one that reflects the unpredictability and severity of his presentations even with current supports in place. These behaviours are clinically documented by treating psychologist at , who noted that his aggressive and impulsive behaviours “occur despite vigilance” and have placed family members at significant physical and psychological risk. His psychologist recommended 30–40 hours of support worker assistance per week as a clinical necessity. He received 8 hours.

NDIS participant. Autistic, ADHD, PDA profile. has significant support needs of her own. She can also present with violence when she becomes dysregulated and significantly distressed. Growing up alongside her brother’s more complex presentations, and without adequate support, has placed her at risk — our paediatrician has raised concerns about cumulative trauma.

We have no extended family support. Our social networks have contracted significantly due to the demands of our circumstances. We are, in every meaningful sense, an island.

3. What Life Looked Like Before Adequate Support — and What

Has Changed

3.1 Before: A Family in Crisis

The conditions our family experienced prior to adequate NDIS support are documented in detail in correspondence I provided to the NDIS dated April 2025. In summary:

• experienced significant distress at his primary school due to a lack of appropriate accommodations. He became severely depressed, anxious, and unable to leave the home.

• We were forced to relocate from our home of 17 years to be closer to a school that could support his disability — and are now at our third school.

  | Senate Submission | May 2026 Page 2

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

• I was unable to return to my onsite nursing role and was working exclusively from home overnight, driving children to school at the end of night shifts — a safety risk I described to the NDIS at the time.

• The lack of adequate supports, ongoing distress and safety risks the family was enduring, required me to take extended leave from my workplace. I was extremely fortunate to have access to accrued long service leave, otherwise we would have lost our home. As you would appreciate, this use of long service leave, whilst necessary, did not provide the opportunity for respite, that long service leave should entail.

  • Violent episodes during periods of dysregulation placed both and me at risk.

Our paediatrician identified as being at risk of developing PTSD.

• I was experiencing severe carer burnout, required antidepressant medication, and had no capacity for exercise, professional support, or basic self-care. I have also shown symptoms consistent with PTSD.

• Both children exhibit the ‘fight’ acute stress response (an automatic, involuntary physiological reaction to a perceived threat or danger). Mine is ‘flight’. Every instinct in my body at that time was to run away as far as possible from the violence – something I would have been told and supported to do if the violence had been perpetrated by an adult. I was in catastrophic sensory distress and very traumatised (as were both children). Whilst I wasn’t suicidal, mainly due to a fear of dying, I didn’t want to be here. This is a very traumatic situation for a parent to experience, and something extremely foreign to me.

• had taken a non-deliberate medication overdose requiring emergency department attendance.

• slammed the car boot on my head during a period of dysregulation. screamed throughout the 40-minute school journeys each day — a level of noise that caused severe sensory distress for and I, compounding our already depleted capacity to manage, and increasing violence.

  • Violence in the car required me to move from his child car seat into the front

passenger seat to prevent being harmed or a collision — itself a safety risk, but the only available option at the time.

•       struck        in the head with a metal garden implement.

• Episodes of violence included smashed windows, punching, kicking, biting with a lock-jaw grip, and multiple incidents involving knives, including explicit threats to kill and I. These were not isolated incidents. They formed the texture of daily life without adequate support.

• Without support, I feared losing my children, my job, our home, and even my life.

3.2 Now: What NDIS Funding Has Made Possible

Since receiving NDIS funding, in particular support worker funding for both and our situation has changed in ways that matter profoundly:

• I have returned to the nursing workforce. I am working as a senior Donation Specialist Nursing Coordinator, contributing to a health system that depends on experienced clinicians. This role is undertaken overnight from home rather than

  | Senate Submission | May 2026 Page 3

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

attending Victorian hospitals to facilitate organ donation as I did prior to having my kids. This overnight, home-based role is the only configuration that makes workforce participation possible given my children’s support needs — and even this arrangement depends entirely on support workers being in place.

•  My children are stable at school.    and      are both attending school — our

third school — with greater consistency. Support workers assist with routines and implementing strategies from their occupational therapy and psychology teams. is now actively engaged in learning, which is something that was not possible for an 18-month period.

•  Community participation has become possible. Support workers enable     to

engage with the community separately from his sister, reducing conflict and distress, and giving both children development opportunities that had previously been impossible. This has been a huge achievement as at his most distressed, could barely leave the house.

• Our home is safer. With support during periods of dysregulation, the risk of harm to and myself has reduced materially.

• is thriving. With dedicated time and support, I am now able to foster development in ways that were previously impossible when all my capacity was consumed by crisis management. These outcomes are not incidental. They are direct, documented consequences of adequate support worker funding. The proposed Bill places each of them at risk.

3.3 What Happened When We Asked for Help

Before receiving adequate NDIS support, I did not simply wait. I reached out to every available service I could find. In each case, those services either failed to help or actively compounded our family’s distress:

• Infant Child and Youth Mental Health Services (ICYMHS): Unable to accommodate our disabilities and lacking expertise in Autistic PDA-profile presentations. ICYMHS concluded that my children’s difficulties were related to my ‘neuroaffirming’ parenting style and a perceived lack of attunement when they were babies. This was clinically incorrect. It was also deeply offensive, and reflective of the ableist, deficit-based framing that the evidence base has long since moved beyond. It added shame and self-doubt to an already impossible situation.

• Orange Door: Orange Door’s remit includes family violence. When I reached out, they were dismissive on the basis that the violence in our home was perpetrated by a child. This response compounded our trauma and constituted discrimination against our family. It also reflects a systemic gap: family violence services are not designed for families where a disabled child is the source of violence, and this gap has real and serious consequences.

• Carers Gateway: Unable to provide support specific to our needs.

• Victorian Inclusion Agency (VIA) / Yooralla — Inclusion Support Program: Staff were unqualified to support Autistic children with a PDA profile. No specific assistance to reduce violence in our home was provided. When I asked — at a point

  | Senate Submission | May 2026 Page 4

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

of complete burnout and in significant sensory distress — about accessing paid respite (no free respite having been available), I was told that if it was that hard, I should have my children fostered. This was not only deeply distressing; it reflects a fundamental misunderstanding of disability support. The appropriate response to a carer in crisis is to provide support — not to suggest the removal of disabled children from their only family. It is not appropriate to separate disabled children from their primary attachment figures in lieu of providing the support the carer needs to survive.

• The NDIA: Over multiple conversations with the NDIA, I was repeatedly told that my children’s care was “parental responsibility” and that family and friends should provide assistance. This was after I had already informed the NDIA that we had no such supports available. Having to repeatedly explain that we were alone — with no co-parent, no extended family, no network — was humiliating and exhausting. We were denied support worker funding on numerous occasions, despite significant and documented violence in our home. It was evident during these interactions that the specialist reports provided to the NDIA had not been read by the staff managing our case. I raise this history because it is directly relevant to the proposed Bill’s suggestion that a $200 million community fund can substitute for individually funded NDIS supports. Our family did not arrive at the NDIS having failed to seek other options. We self-funded allied and mental health supports, sought every available alternative, exhausted each one, and found that none could meet our needs. The NDIS — when it finally provided support, which remains below clinical recommendations — was not our first resort. It was our last.

4. The Hidden Financial Cost of Disability The financial burden of raising two disabled children as a sole parent, while managing my own disability, is substantial and largely invisible to policymakers. The proposed Bill’s financial sustainability framing focuses exclusively on the cost to the NDIS. It does not account for the existing and considerable financial burden already carried by disabled families themselves.

I currently hold two jobs in order to meet our family’s costs. Despite this, for the first time in my adult life, I am experiencing genuine financial insecurity — a direct consequence of the cumulative additional expenses that disability brings.

Diagnostic costs: Receiving an accurate diagnosis is the gateway to NDIS access, yet the assessments required are privately funded and expensive. For each of my children, obtaining the diagnostic reports required to access NDIS support cost several thousand dollars — costs borne entirely by our family, with no public subsidy. Our family was fortunate that I was able to find this money; many families cannot, and are therefore denied access to supports their children need because they cannot afford the diagnostic process that unlocks access to them. This is a systemic inequity that is never accounted for in discussions about NDIS sustainability.

Ongoing pharmaceutical costs: Our family’s out-of-pocket pharmaceutical expenses are approximately $500 per month - just for prescription medications. These are not optional

| Senate Submission | May 2026                                         Page 5

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

costs. They are the medications that make daily functioning possible for our family and that contribute to the stability that allows me to remain in the workforce.

Additional disability-related expenses: Beyond these direct costs, our family carries ongoing additional expenses related to disability: specialist appointments, equipment, home safety repairs and modifications (including the shatterproof windows described above), therapy co-payments, and the practical costs of navigating a system not designed for families like ours. None of these are reimbursed by the NDIS or any other mechanism.

Families like ours are not a drain on the system. We are already absorbing substantial costs that, without NDIS support, would rapidly translate into crisis, welfare dependency, and far greater government expenditure. Any honest assessment of the fiscal impact of proposed NDIS changes must account for this reality.

5. Specific Objections to the Proposed Bill 5.1 The 50% Cut to Social, Civic and Community Participation Supports

The proposed Bill would reduce budgets for Social, Civic and Community Participation supports by 50% from 1 October 2026, resetting spending to 2023 levels. For our family, this provision is not a budget adjustment. It is a removal of the core support that makes our current life possible.

Support worker funding is what enables    and       to participate in the community,

attend appointments, separate during periods of conflict, and maintain safety at home. It is what enables me to work. A 50% reduction in this funding would not represent a partial inconvenience — it would cross a threshold below which safe participation in the workforce and community becomes impossible for our family.

The framing of community participation supports as a budget line to be trimmed fundamentally misunderstands how these supports function for Autistic families with PDA profiles. For many Autistic people, particularly those with a PDA profile, community participation supports are not supplementary — they are the mechanism through which core disability needs are met. They are how regulation happens. They are how therapy recommendations are implemented. They are how safety is maintained. Cutting them by half is not a conservative adjustment. For families like ours, it is a cliff edge.

To put this in clinical terms:      psychologist at                     formally recommended

30–40 hours of support worker assistance per week as a clinical necessity — a level of support described as necessary to enable to develop independence, reduce safety risks, and allow me to adequately support my children. He received 8 hours, which is far below the formal recommendation. A 50% reduction in community participation funding would make it impossible to maintain anything approaching this level of support. The progress has made would be undermined. The safety of our household would be directly compromised.

5.2 Tightened Eligibility Criteria and the Permanence Test

The Bill proposes that an impairment will not be considered permanent if every appropriate treatment has not been tried — with “appropriate” defined without regard to financial

| Senate Submission | May 2026                                         Page 6

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

circumstances or geographical access. This provision is deeply concerning for Autistic families.

Autism, ADHD, and PDA are lifelong neurotypes. They are not illnesses to be treated or cured. Imposing a treatment-exhaustion test before recognising permanence is not only clinically inaccurate — it reflects a medical model understanding of disability that contradicts the neurodiversity-affirming approach that the evidence now supports, and that the NDIS was designed to embody.

For a sole parent with two children who is working shift work, the suggestion that financial circumstances should not be considered in determining what treatment is “appropriate” is not just unreasonable — it is disconnected from the realities of disabled family life.

5.3 Subordinating Individual Need to Financial Sustainability

The proposed amendment to Section 3(1)(d) — qualifying the NDIS’s purpose with the phrase “so far as is consistent with the financial sustainability of the scheme” — represents a fundamental change to the scheme’s purpose and legal character.

The NDIS was founded on the principle that eligible Australians with disability are entitled to reasonable and necessary supports — not supports that are reasonable and necessary insofar as the budget permits. Embedding financial sustainability as a qualifying condition for individual support entitlements sets a precedent that will be used to justify ongoing erosion of the scheme, and it removes the legal certainty that participants depend on when planning their lives, their care arrangements, and their employment.

5.4 Inadequacy of the Proposed Foundational Supports Replacement

The $200 million Inclusive Communities Fund proposed as a replacement for community participation supports is not an equivalent substitute for individually funded, disability-specific support. General community inclusion activities cannot replicate the role of a trained support worker who understands a specific child’s Autistic and PDA profile, who has built a trusting relationship over time, and who can flexibly respond to the fluctuating support needs that are intrinsic to these neurotypes.

For Autistic people with PDA profiles, relationship continuity is not a preference — it is a clinical necessity. The capacity to participate in community activities depends on trust, predictability, and a co-regulation relationship that cannot be substituted with generic community programming.

6. The Direct Impact on Our Family if These Changes Proceed If the proposed 50% reduction in community participation support funding is implemented, the likely consequence for our family is as follows:

• I will no longer be able to maintain safety for my children whilst continuing to work.

• I will have no option but to leave the nursing workforce.

• Without my income, we will lose our home. As a sole parent and woman in the private rental market, re-housing will not be straightforward.

  | Senate Submission | May 2026 Page 7

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

• I will no longer be able to afford the medications that are vital to maintaining our health.

• Our family will require Commonwealth income support, health care support and housing assistance — the very government expenditure the Bill ostensibly seeks to reduce.

  • and will lose access to the community participation, therapeutic support

implementation, and safety supervision that their current level of functioning depends on.

• The gains in school stability, community engagement, and emotional regulation that we have worked so hard to achieve are likely to be reversed.

• There will almost certainly be a significant deterioration in the physical and mental health of everyone in the family.

I want to be direct with the Committee: the proposed savings from reducing our family’s NDIS support would be overwhelmingly offset by the cost of supporting a sole-parent family on welfare, with housing insecurity, with two children whose presentations will deteriorate without adequate support, and the loss of an experienced senior nurse from a health system that is chronically understaffed.

This is not a hypothetical. This is the arithmetic.

7. The Broader Context: Disabled Families and the Workforce I am aware that I am one of many Australians whose workforce participation is made possible by NDIS supports. The intersection of disability and sole parenthood is particularly acute. Disabled sole parents — and particularly disabled sole parents caring for disabled children — face a compounding disadvantage that makes the cliff edge of reduced support especially steep.

I am also aware that there is a nursing workforce shortage across Australia. Experienced senior nurses are not interchangeable resources. The clinical knowledge, procedural competency, and leadership capacity I bring to each shift took years to develop. The cost of replacing that capacity — to the extent it can be replaced — is not captured in any NDIS budget calculation.

I raise this not to overstate my individual importance, but to illustrate that the impact of these proposed changes extends beyond disabled individuals and families. When the NDIS reduces supports to the point that skilled professionals can no longer remain in the workforce, the costs are distributed across the entire community.

8. Recommendations I respectfully urge the Committee to:

   | Senate Submission | May 2026 Page 8

Submission 269

Senate Submission: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

• Reject the proposed 50% cut to Social, Civic and Community Participation supports, or at minimum defer implementation pending a thorough, participant-led review of how these supports function for Autistic PDA-profile participants.

• Remove or substantially revise the proposed permanence test, and explicitly recognise Autism, ADHD, and related neurotypes as permanent conditions that do not require treatment exhaustion to be acknowledged.

• Remove the financial sustainability qualifier from Section 3(1)(d), preserving the NDIS’s foundational commitment to meeting individual need.

• Commission independent modelling of the net fiscal impact of proposed changes on sole-parent disabled families, including welfare, housing, and health system costs.

• Engage meaningfully with Autistic-led and PDA-informed advocacy organisations before finalising any changes to participation supports, eligibility criteria, or planning processes.

• Ensure that any replacement “foundational supports” are adequately funded, individualised, and available before NDIS supports are reduced — not as a retrospective measure after participants have already experienced harm.

9. Conclusion I began writing this submission knowing that many people across Australia are in similar or far more difficult situations than ours. I also write it knowing that our current stability is fragile, and that the proposed changes would be enough to tip our family back into crisis.

The NDIS, when it works well, does not create dependency — it creates capacity. It enabled me to return to a career I love and that serves my community. It enabled my children to attend school, access therapy, and participate in the world. It enabled our family to function.

The proposed Bill, as currently drafted, does not secure the NDIS for future generations. For Autistic families like ours, it secures the opposite: a return to the isolation, crisis, and economic precarity that adequate support worked so hard to lift us out of.

I urge the Committee to hear this submission, and the many others like it, and to recommend significant amendments to the Bill before it proceeds further. The lives of my family, and those of many others, literally depends on it.

Thanks kindly

Senior Registered Nurse – AHPRA r

Sole parent, NDIS carer, Autistic adult

May 2026

| Senate Submission | May 2026                                         Page 9