NDIA Accountability Project

Concerns regarding restrictive access and inadequate co-design for children with complex disabilities

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Submission 1824

Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by:

Version: 2 — Formal Policy Submission

Note on AI Use: This submission was prepared with the assistance of AI writing tools, which I use as assistive technology to manage the impacts of ADHD and dyslexia on my written communication. The ideas, opinions, and recommendations contained here are wholly my own; AI has provided structure and clarity to my words, not created them. My use of these tools is itself a reflection of what it means to live with an invisible disability — developing adaptive strategies to participate fully in civic and professional life, often without formal support. I take full responsibility for the accuracy and content of this submission.

Introduction

I am the parent and full-time carer of two children accessing the National Disability Insurance Scheme, and I have been navigating the NDIS since 2022. My six-year-old daughter lives with Autism Spectrum Disorder Level 2, ADHD, severe anxiety, emotional dysregulation, and significant functional impairments across home, school, and community settings. My older child also has ASD Level 2 and ADHD.

I support the long-term sustainability of the NDIS. However, I am deeply concerned that the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 focuses primarily on restricting participant access rather than addressing the structural inefficiencies, administrative waste, and inconsistent decision-making that drive scheme costs. I am also concerned that the Bill grants significant ministerial powers without adequate parliamentary oversight or co-design with the disability community.

This submission outlines my key concerns and corresponding recommendations, structured to assist the Committee in identifying practical reforms that strengthen the scheme without causing harm to disabled Australians and their families.

Concern 1: Lack of Genuine Co-Design and Consultation

This Bill proposes substantial structural changes affecting disabled people, families, carers, providers, and clinicians. Yet many participants and families feel they were not meaningfully consulted during its development. The disability community holds lived expertise that cannot be replicated through policy modelling alone — expertise about service gaps, safety risks, school exclusion, burnout, and the cumulative impact of inadequate support.

The current process has created significant fear and uncertainty within the disability community. Legislation of this significance should not proceed without extensive co-design involving disabled people, parents and carers, First Nations communities, rural and regional participants, therapists and clinicians, advocacy organisations, behaviour support practitioners, and individuals with complex support needs.

Recommended Action

Submission 1824

Delay passage of the Bill until genuine co-design consultation has occurred with the disability community, including First Nations, rural, and complex-needs representatives.

Concern 2: Excessive Ministerial Powers Without Adequate Oversight

The Bill grants unprecedented discretionary powers to the Minister through legislative rules rather than primary legislation. Critical matters left undefined in the Bill itself include definitions of NDIS-fundable supports, assessment tools, eligibility criteria, funding methodologies, appeal pathways, and transitional protections. These are not administrative details — they are central to the rights, autonomy, and quality of life of disabled Australians.

Families are being asked to accept significant reform while the substantive rules governing that reform remain undefined. This is not a reasonable position to place the disability community in.

  • Ensure all key eligibility criteria, assessment processes, and appeal pathways are defined in primary legislation rather than delegated to ministerial rules.
  • Introduce stronger parliamentary oversight mechanisms and transparency requirements for ministerial rule-making under this legislation.
  • Publish proposed assessment tools and funding methodologies for public consultation before implementation.

Concern 3: Restricting Access Without Addressing Systemic Inefficiency

I acknowledge and support the principle that the NDIS must remain financially sustainable. However, this Bill appears to focus on reducing participant access rather than addressing the systemic inefficiencies that drive scheme costs. Families routinely observe significant waste through excessive bureaucracy, duplicated assessments for permanent disabilities, inconsistent planning decisions, poor inter-system coordination, delayed plan approvals, and long review and appeal processes.

In my own experience, we have submitted extensive evidence from paediatricians, occupational therapists, psychologists, behaviour support practitioners, and play therapists— and continue to face uncertainty about whether essential supports will remain accessible. The system creates additional administrative burden and emotional trauma for families already under extreme pressure.

  • Prioritise reform of administrative inefficiency before reducing participant access, including eliminating duplicated assessments, reducing unnecessary reassessments of permanent disabilities, and improving planning consistency.
  • Ensure review and appeals processes remain accessible, transparent, and timely.

Concern 4: Risks to Children With Complex and Invisible Disabilities

I am particularly concerned about children with invisible, fluctuating, or psychosocial disabilities, including autistic children with complex behavioural and sensory support needs. Children like my daughter do not fit neatly into simplistic functional assessments. A child may appear verbally capable or academically bright while simultaneously being unable to attend

Submission 1824

school consistently, requiring constant supervision to prevent self-injury or absconding, and needing extensive co-regulation from caregivers throughout every part of the day.

The proposed use of functional assessment tools such as the I-CAN is not inherently inappropriate — but I have serious concerns about how they may be administered. The I- CAN is a complex clinical tool currently requiring specific professional training. Any proposal to allow it to be administered by unqualified or minimally trained individuals as a cost-saving measure risks producing inaccurate assessments, particularly for individuals with masking behaviours, fluctuating capacity, or complex neurodivergent presentations.

If eligibility criteria become overly narrow, many children with substantial functional impairments may lose access to essential supports. This would not reduce need — it would shift costs and crises to hospitals, mental health systems, education systems, child protection, emergency services, and families already at breaking point.

 7.  Ensure all NDIS assessments are conducted or directly overseen by appropriately qualified allied health professionals with relevant clinical and functional expertise.
 8.  Adopt neuroaffirming and trauma-informed approaches when assessing autistic children and individuals with psychosocial disability.
 9.  Ensure assessment frameworks are designed to capture fluctuating and context-dependent functional impairment, not just observable deficits at a single point in time.

Concern 5: Workforce Gaps and Community Participation Supports

The Bill does not adequately address one of the most significant barriers participants face: the inability to access supports even when funding exists. In many areas, therapists carry extensive waitlists, behaviour support practitioners are difficult to access, support workers lack training for complex neurodivergent presentations, and regional families face severe shortages. Reducing participant supports without first addressing these structural gaps risks worsening outcomes while failing to achieve meaningful sustainability.

Community participation supports are frequently mischaracterised as optional extras. For children like my daughter, they are not. They are how disabled children learn to safely exist in the world. They are where the skills built through therapy — emotional regulation, communication, sensory tolerance — are applied in real environments with peers. They are the foundations of future participation in education, employment, relationships, and community life. Without them, therapy risks becoming disconnected from functional outcomes, and families become increasingly isolated.

My older child is evidence of what timely and appropriate support can achieve. With early NDIS support, he is now thriving academically, socially, and emotionally in ways that once seemed impossible. That progress was only possible because we could access help before crisis point, and without the constant fear of whether we could sustain it privately. I worry, however, that his current capabilities may mean he no longer qualifies for the supports that are making that progress possible. His disability fluctuates, and his current capacity is not a guarantee of his future capacity. Having to re-qualify through lengthy processes risks him losing the potential he has worked so hard to build. This is why I am so concerned about reforms that create further barriers for families currently in the position we once were.

10. Increase investment in NDIS workforce development, including training for complex and neurodivergent presentations, and improve service availability in regional areas.
11. Ensure community participation supports are recognised as foundational developmental and therapeutic investments, not discretionary extras, in line with the early intervention objects of the NDIS Act.

Senate Community Affairs Committee Submission | | Page 3 of 4

Submission 1824

Concern 6: The Invisible Cost of Unsupported Caregiving

My daughter currently requires near-constant supervision, extensive emotional co-regulation, environmental modification, reduced school attendance, multiple therapeutic supports, and intensive parental involvement across all settings. These demands significantly impact employment, finances, mental health, relationships, and the wellbeing of siblings. What is often missing from policy discussions is the reality of what daily life looks like for families in this position.

When governments frame disability supports primarily through the lens of financial burden, families feel invisible. The economic contribution of unpaid carers — particularly mothers, many of whom leave the workforce entirely — is rarely acknowledged. The NDIS is not simply about funding therapies. For many families, it is the difference between sustainability and collapse.

  • Formally recognise the essential role of unpaid carers in the NDIS framework, and assess the sustainability risks of reforms that increase carer burden without corresponding support.
  • Ensure carer wellbeing and workforce participation impacts are included in any cost- benefit analysis underpinning these reforms.

Conclusion

I support reform that genuinely strengthens the NDIS and ensures its long-term sustainability. But sustainability cannot come at the expense of disabled people and their families. True reform requires collaboration, transparency, evidence-based policy, and investment in systems that actually work.

I would ask the Committee to hold onto one fundamental truth: changing who can access the NDIS, or what supports they may receive, does not make disabled people or their support needs disappear. What Australia is seeing through the NDIS is not the creation of disability need, but the visibility of it. That visibility can feel confronting when viewed through a financial lens alone. But disabled Australians are not accounting problems to be reduced. They are members of our community, and it is the responsibility of government not to make them invisible again, but to find sustainable, fair, and humane ways to include them.

The disability community deserves reform developed with them, not for them.

Thank you for considering this submission.