Submission to the Senate Community Affairs Legislation Committee

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

May 2026

CONFIDENTIALITY REQUEST: I request that my name and contact details be kept confidential and not published. Given the personal detail contained in this submission, including disclosure of family and domestic violence, I ask that the Committee treat this information with appropriate sensitivity. I consent to the substance of the submission being published without identifying details.

Introduction

I am submitting as a parent of two NDIS participants, a former full-time carer and home educator, an AuDHD (autistic and ADHD) woman and NDIS participant myself, and a survivor of family and domestic violence. I am also a former Senior Biostatistician whose career was ended by the weight of unsupported caring responsibilities.

My submission addresses Schedule 4 (framework planning) and Part 6 (parental responsibility and informal supports) of the Bill. I am particularly concerned about provisions that codify “parental responsibility” and “informal supports” as factors in funding decisions, and the provision that prevents the CEO from approving supports whose primary purpose is to reduce parental burden below what is “reasonably expected.” I also address the Bill’s plan suspension provisions and the treatment of evidence in funding decisions.

My submission is consistent with and elaborates on concerns raised by Sam Paior of The Growing Space in her formal submission to this inquiry, particularly Ideas 29 (Be fair to parents and families), 30 (Protect dignity in personal care), 8 (Stop plans being cut off by surprise), 27 (Count lived experience as evidence), and 31 (Other services must really exist). I write to place on the public record what these provisions mean in practice, from inside the intersection of disability, caring, and family and domestic violence.

My experience as context for these provisions

I left my career as a Senior Biostatistician approximately 3.5 years ago when my son, an NDIS participant with a complex AuDHD and PDA profile, could no longer attend school. This was not a choice. It was the only available response to systemic failure — inadequate school supports, insufficient NDIS funding, and no viable alternatives. I home-educated him for 3.5 years. I managed all therapeutic coordination, behavioural crises, school advocacy, sleep disruption, and daily regulation — simultaneously supporting my daughter, also an NDIS participant with AuDHD, through her own significant school difficulties.

The ableist asymmetry the Bill does not account for

I am an NDIS participant myself. My former partner also has a neurodivergent profile with significant executive functioning support needs. He actively encouraged me to apply for the NDIS. He refused to apply himself - citing his professional standing as a reason not to have his own needs assessed and documented.

The result was a household in which my disability was visible, assessed, and used to justify ongoing informal support provision - while his remained invisible, undocumented, and absorbed by me. I was performing executive functioning support for an unsupported neurodivergent adult, for two children with complex disability profiles, and managing my own unmet AuDHD needs, simultaneously.

This is not an unusual dynamic. It reflects a broader ableist pattern in which disability documentation is unevenly sought, unevenly applied, and unevenly used - frequently to the advantage of those with social power and to the disadvantage of women and carers. The Bill’s “informal supports” provisions have no mechanism to account for this. A planning framework that takes “supports available in the home” at face value cannot account for the power dynamics that determine who provides those supports, under what conditions, and at what cost.

On what “reasonably expected” will mean in practice

The phrase “reasonably expected” is undefined in the Bill. In practice, it will be interpreted against families who are already providing support — meaning the more a family has absorbed, the more will be deemed “reasonable.” This is a mechanism that rewards exhaustion and penalises families who are already past capacity.

I was already performing work that would cost hundreds of thousands of dollars annually if professionally funded. Under Part 6 as drafted, that level of provision risks becoming the baseline against which “reasonable expectation” is measured for families in similar circumstances.

The provision also creates particular risk for families in FDV situations, or where the carer is themselves a person with disability. In my case, the “informal support” I was providing was not freely given in any meaningful sense — it was the product of financial dependence, coercive control, and a system that had made me the only available option. Legislating a presumption of ongoing parental informal support without any mechanism to assess whether that support is freely given, sustainable, or safe is a significant and harmful oversight.

On lived experience as evidence

The Bill elevates peer-reviewed research as the primary evidence base for funding decisions. For many disability profiles — particularly AuDHD with a PDA (Pathological Demand Avoidance) profile, which both my children and I navigate — the peer-reviewed research base is thin, recent, and still contested. Decisions about my son’s supports have always required clinicians and family to argue from lived experience, professional observation, and pattern recognition, because the research simply does not yet exist at the scale the Bill would require.

A funding framework that deprioritises lived experience and clinician observation in favour of peer-reviewed evidence will systematically disadvantage participants with newer, emerging, or less-studied disability profiles. This is not a minor gap. It is a structural bias built into the evidence hierarchy that will produce worse outcomes for some of the most complex and least understood presentations in the system.

1. That “reasonably expected” parental responsibility be clearly defined and bounded in the legislation, with explicit limits that cannot be expanded through administrative interpretation.
2. That the structural contradiction between Part 1 (informal supports excluded from capacity assessment) and Part 6 (informal supports considered in funding decisions) be resolved in a way that does not disadvantage participants.
3. That planning decisions involving informal supports include an explicit assessment of whether those supports are freely given, sustainable, and do not place the carer at risk — including risk from family and domestic violence or financial abuse.
4. That where the identified informal support provider is themselves a person with disability, this be treated as a flag requiring additional scrutiny of the support plan, rather than as confirmation of available capacity.
5. That the plan suspension provisions be amended to include explicit protections for participants in FDV situations, recognising that silence or non-contact may indicate crisis rather than disengagement, and that suspension of supports at such a moment can cause serious harm.
6. That lived experience and clinician observation be recognised as legitimate evidence in funding decisions, particularly for disability profiles where peer-reviewed research is limited, emerging, or contested.
7. That the Bill’s provisions allowing redirection to other service systems include a requirement that those systems be demonstrably available, accessible, and adequate for the specific participant — not merely existing in name.
8. That the Committee consider the long-term systemic cost of carer collapse — including family breakdown, family and domestic violence, financial ruin, health deterioration, and workforce exit — as outcomes that current “parental responsibility” framing actively produces.

Conclusion

The NDIS exists because disability support has an economic and human cost that individuals and families cannot be expected to absorb alone. This Bill risks reversing that foundational principle through provisions that are vague, internally contradictory, and silent on the conditions under which informal support is provided.

I am one person. But the pattern I am describing — neurodivergent mothers, caring for disabled children, with their own unmet support needs, in households where disability and caring labour are distributed by power rather than capacity, navigating FDV while trying to remain engaged with systems that were not designed for them — is not rare. It is systemic. And it will be made worse, not better, by the provisions in this Bill as currently drafted.

I urge the Committee to strengthen, not weaken, the protections that sit between disabled people and their families on one side, and unsustainable government cost-shifting on the other.