Fight for L's Supports: Systemic NDIA Data Errors (Family or carer experience)

Submission 885

Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill

Submission to the Senate Community Affairs Legislation Committee

NDIS (Securing the NDIS for Future Generations) Bill 2025

Submitted by:

Roles: Parent and primary carer of two NDIS participants | self-managed NDIS plans |Mum

working Full-Time paying taxes Location:

Date: May 2025

1. Introduction My name is . I am the parent and primary carer of two NDIS participants: L ,

aged 13, and M , aged 10. To support my children under their self-managed NDIS plans, I have established a small business specifically to employ support workers, a deliberate choice to exercise the choice and control the NDIS is designed to enable, and to ensure L and M are supported by people who are the right fit for their needs. I live in , where I manage the daily realities of disability support largely on my own.

I am submitting this document because I believe the proposed NDIS (Securing the NDIS for Future Generations) Bill carries serious risks for families like mine. I am not a lawyer or a policy expert. I am a mother who has spent years fighting, through tribunals, through bureaucratic systems, and through sheer persistence, to ensure that my children have access to the supports they need to live meaningful lives. My submission is grounded in that lived experience.

I ask the Committee to read this carefully, not as a complaint, but as evidence. Evidence of what the NDIS can achieve when it works, and what is at stake when it fails.

2. What the NDIS Has Made Possible Seven years ago, L was completely non-verbal. You could not understand a single word he said. Today, L is verbal, growing his vocabulary, and communicating with his family and the world around him. That transformation did not happen by accident. It happened because of intensive, sustained therapeutic intervention funded through the NDIS.

If you had told me seven years ago that L would be talking today, I would not have believed it. The NDIS made that possible.

NDIS funding has also allowed our family to access the community safely. L has a history of absconding, leaving without warning and without comprehension of the danger he is placing

Submission 885

Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill

himself in. Without properly funded community access supports and skilled support workers, leaving the house becomes a safety crisis rather than a normal part of family life.

My daughter M has also benefited from the NDIS, and her experience stands in meaningful

contrast to L       ’s. Where M   has had the benefit of a good planner and well-matched

supports, her outcomes have reflected that. The difference between the two experiences is not about the children, it is about the system around them.

3. A System That Does Not Always Work: Our Fight for L Since 2024, I have been in an ongoing dispute with the National Disability Insurance Agency (NDIA) over L ’s supports. Those supports were cut. I have been fighting to have them reinstated ever since. That fight has now escalated to the Administrative Review Tribunal (ART), where I am representing myself as a self-represented applicant against Lawyers and Barristers.

This is not a position any parent should find themselves in. I am not a lawyer, I have no legal background. I am a a mum, a carer and trying to work a full-time job to support my family. And yet I have had to master tribunal procedures, engage with complex legislative frameworks, and pursue formal legal processes, all while continuing to care for my children and work full time.

I want the Committee to understand something important: I discovered through a Freedom of Information (FOI) request that L has not been set up correctly within the NDIA’s own systems. This is not a minor administrative matter. Incorrect system configuration affects how decisions about L ’s supports are made, and it means that some of those decisions may have been based on inaccurate data from the outset. We also discovered that another participant had been referred to in L file. I am raising this not only as a personal grievance, but as evidence of a systemic problem. If it has happened to L , it has happened to others.

I should not need to go to a tribunal to prove that my son needs support. I should not need to submit an FOI request to discover that he has been set up incorrectly in a government database. These are failures of the system, not of my son.

4. Concerns About the Proposed Bill

4.1 Stricter Eligibility and Permanence Criteria

Submission 885

Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill

The Bill proposes tighter criteria around permanent disability. I am deeply concerned about

what  this means  for  children whose  disabilities are  real and  significant,  but whose

presentations may shift over time, particularly when the shifts are the direct result of NDIS funded intervention.

L ’s progress is something to celebrate. But under a stricter ‘permanence’ framework, that same progress could be used to argue that he no longer qualifies for support. This is perverse. It would punish families for outcomes that the NDIS was designed to create.

4.2 Having to Try All Appropriate Treatments First

The requirement that participants exhaust ‘all appropriate treatments’ before accessing NDIS funding assumes that those treatments are accessible, affordable, and timely. For families in western Sydney, they are often none of those things. Waitlists are long. Out-of-pocket costs are high. And for a child who is non-verbal and absconding, delay is not a neutral outcome — it is a risk.

4.3 Other Government Schemes Before NDIS

Requiring families to first access other government schemes before the NDIS introduces new layers of complexity, delay, and potential cost-shifting onto families who are already managing more than most people can imagine. In practice, this provision would fall hardest on the most vulnerable.

4.4 Reduced Funding for Social and Community Participation Community access is not a luxury for L . It is a safety and developmental necessity. L does not yet comprehend age-appropriate behaviour in community settings. He requires skilled, one-on-one support to participate safely. Without it, he cannot leave the house safely. Our family becomes isolated. L wants to engage in the community like other his age, but without support teaching him it will make it nearly impossible for L to meet this goal.

If funding for social and community participation is reduced or reclassified, the practical effect for us would be that L cannot safely join his community. This is not about preference. It is about basic rights.

4.5 Greater Expectations on Families and Unpaid Carers This Bill, in several of its provisions, quietly shifts responsibility back onto families. I want to

be direct:  I already carry an extraordinary amount.  I am my children’s primary carer, their

advocate, their case manager and now their legal representative before a tribunal. There is very little left to shift onto me.

Submission 885

Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill

We live in the shadows. We just keep going. We don’t complain, because there’s always someone who has it harder. But we fight for our children’s right to live as much of a normal life as possible.

Any policy that increases the burden on unpaid carers without increasing their support is not a reform. It is a cost transfer.

4.6 Functional Capacity Assessments Replacing Clinical Evidence

My concern with standardised functional capacity assessments is that they are only as good as the information fed into them. We have already seen, through L ’s FOI records, that the NDIA’s own data about him contains errors. Funnelling important decisions through automated or formulaic assessment tools, without adequate human oversight and without reliable underlying data, creates a real risk of unjust outcomes.

4.7 Automated Decision-Making

Automated decision-making is particularly concerning in a context where we already know that individual records may be incorrect. A system that makes decisions quickly but incorrectly, and at scale, causes harm at scale. I urge the Committee to require meaningful human review at every significant decision point.

4.8 Plan Reassessments and Shortened Plan Timeframes

Frequent plan reassessments do not just cost the NDIA money and time. They cost families. Every reassessment is a period of uncertainty, a risk of reduction, and for self-represented families like mine, potentially another round of dispute and appeal. Shorter plan cycles would increase instability for participants whose needs are well understood and consistent.

4.9 Changes to Reasonable and Necessary The ‘reasonable and necessary’ test is the cornerstone of the NDIS. Any changes to it must be assessed against the lived impact on participants, not just on budget modelling. For L , the supports that have been funded under this test are the ones that have produced the outcomes the NDIS was designed to produce. Narrowing the test would undo that.

4.10 Civil Penalties and Compliance Burden on Providers I established a small business specifically to employ support workers for L and M under their self-managed plans. This structure gives us the flexibility to select staff who are genuinely suited to our children, not whoever happens to be available through a large agency. Running that business already carries real administrative and compliance obligations. Any further regulatory burden on families who have chosen to self-manage and directly employ

Submission 885

Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill

risks making that model unworkable, and with it, undermining the principle of choice and control that sits at the heart of the NDIS.

5. What I Want the Committee to Understand People without disability in their lives often do not understand what our daily lives look like. They do not see the planning, the advocacy, the negotiation, the grief, the administrative load, or the love that goes into raising and caring for a disabled child. They do not see the hours I spend preparing for tribunal hearings while also running a business and parenting two children.

The NDIS, at its best, is transformative. L ’s voice is proof of that. But the NDIS at its

worst, when  it cuts supports without adequate justification, when  it sets up participants

incorrectly in its systems, when it forces families into tribunal processes, causes real harm.

The question I ask the Committee to consider is this: will this Bill make the NDIS better for the people it exists to serve, or will it make it harder for families like mine to access the supports that are genuinely changing lives?

Based on what I have read and experienced, I am not confident the answer is the former.

6. Recommendations I respectfully ask the Committee to recommend the following:

• That any changes to eligibility criteria explicitly protect participants whose condition is permanent but whose functional gains result from NDIS-funded intervention, so that progress is not used as grounds for removal from the scheme.

• That functional capacity assessments be accompanied by independent clinical review, and that NDIA participant records be subject to regular accuracy audits, given evidence that errors in those records can affect individual outcomes.

• That automated decision-making be prohibited as the sole basis for any decision to reduce, refuse, or end a participant’s supports, and that meaningful human review be guaranteed.

• That the concept of ‘reasonable and necessary’ be interpreted in a manner consistent with its original legislative intent: to fund supports that are effective, linked to a participant’s disability, and not more appropriately funded elsewhere, not to be narrowed as a cost-saving mechanism.

Submission 885

Senate Inquiry — NDIS (Securing the NDIS for Future Generations) Bill

• That any expansion of obligations on unpaid carers be accompanied by genuine carer support measures, recognising that many carers are already at or beyond capacity.

• That community access and social participation supports be protected, particularly for participants who cannot safely engage in the community without skilled, one-on-one support.

• That the Committee commission an independent review of NDIA system data integrity, including whether participants are correctly classified within NDIA systems, and what mechanisms exist to identify and correct errors.

• That self-represented participants and carers have access to free, independent legal assistance when their supports are disputed, recognising that the cost and complexity of tribunal proceedings is a significant barrier to justice.

7. Conclusion I have submitted this because I believe the voices of families who are living this every day must be part of this process. We are not statistics. We are not line items in a budget. We are families who are doing our best, every single day, to ensure that our children have what they need to thrive.

L can talk. That happened because the NDIS worked. I am here today to make sure it keeps working, for him, for M , and for every family who cannot afford for it to fail.

I thank the Committee for the opportunity to contribute to this inquiry and urge you to proceed with the utmost care.

Parent, Carer and NDIS Provider

May 2025