Risk of funding reduction due to agency policy changes (Family or carer experience) | External submission

Submission 707

Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Submission by:

Date: 24 May 2026

I am the mother and plan nominee of two NDIS participants. Both of my sons have diagnoses of Autism Spectrum Disorder and have been participants in the NDIS for a few years.

As their plan nominee, I am the person who manages their plans, liaises with the NDIA, coordinates their providers, responds to administrative requests, attends plan reassessments, and makes the day-to-day decisions about how their funded supports are used. I do this alongside working, caring responsibilities, and my own health considerations.

The NDIS has been pivotal for my family. Funding has enabled my sons to access speech therapy, occupational therapy, physiotherapy for associated muscleskeletal issues and life-changing social skills support that has materially changed their capacity to participate in school and community life. The NDIS has provided the support my sons need to develop independence skills they will carry into adulthood. Before the NDIS was rolled out in Queensland, my husband and I paid thousands of dollars for diagnostic and therapeutic services for our children.

I make this submission in a personal capacity as a parent and nominee. I am not a lawyer or policy professional. But I have spent years navigating the NDIS system on behalf of my children, and I understand intimately how administrative decisions translate into real consequences for our family.

Summary of concerns

I do not oppose this Bill in its entirety. I support efforts to protect participants from predatory providers, prevent fraud, and ensure the NDIS remains available for my sons into their adult lives.

However, I am concerned that several provisions in this Bill create broad powers that could be used in ways that harm the people they are supposed to protect — including my sons. As a nominee managing two plans simultaneously, I am particularly concerned about:

The plan variation power and the risk that my sons’ funding could be reduced for reasons unrelated to their actual needs;

Submission 707

The claims documentation power and the practical difficulty of responding to administrative requests while caring for two disabled children;
The permanence definition and what it means for people with autism;
The delegation of critical detail to rules that have not yet been written and cannot be scrutinised during this inquiry;
The anti-promotion order power and its potential to limit access to information that families like mine depend on.
Plan variation: we need certainty that funding reflects need The Bill confirms that the total funding amount in a participant’s plan may be increased or decreased. The Government describes this as a clarification of existing law. Whether or not that is technically correct, the practical effect is to remove any ambiguity about the NDIA’s authority to reduce plans.

I manage two plans. I have built our family’s life - my sons’ therapies, their routines, their progress - around the supports those plans fund. I am not opposed to plans changing when circumstances change. If one of my sons develops new skills, achieves greater independence, or no longer needs a particular support, I would expect his plan to reflect that. That is the system working as intended.

What I am afraid of is something different: that my sons’ plans could be reduced not because they have changed, but because the Agency has changed its pricing, its benchmarks, or its policy settings. I have watched this happen to other families — plans cut at reassessment with no change in the child’s needs, justified by opaque references to “typical” funding levels or internal cost tools - even in the face of substantial and compelling evidence.

With two children, this risk is doubled. A single policy shift in how the NDIA funds autism supports could affect both my sons simultaneously.

Recommendation 1: The Committee should recommend an amendment providing that the total funding amount in a participant’s plan may only be decreased where:

(a) the participant’s functional capacity or support needs have materially changed; or

(b) the participant or their nominee consents to the variation; or

and that a decrease may not be made solely on the basis of changes to Agency pricing arrangements, benchmark costs, or budgetary considerations unrelated to the individual participant’s circumstances.

Submission 707

Recommendation 2: The Committee should recommend a transitional provision that no participant’s total funding amount may be reduced as a direct consequence of new rules made under the plan variation power for a period of 12 months after those rules commence. This would allow time for unintended consequences to be identified and would preserve families’ access to review processes before reductions take effect.

Claims documentation: the reality of managing two plans as a carer The Bill allows the CEO to require further documentation supporting a claim for payment, and to refuse payment if that documentation is not provided within a minimum of 14 days.

I want to explain what 14 days looks like in my life.

I manage two separate NDIS plans. I coordinate a number of providers across those two plans. I cannot overstate the potential impossibility of complying with such a request within 14 days.

If I received a documentation request for one of my sons’ claims during one of those periods where our family is suffering acute stress, I may not be able to respond within 14 days. Not because I am being evasive or non-compliant, but because I am prioritising my children’s immediate needs, or my own, over administrative paperwork. Under this Bill, the consequence of that is refused payment — which means the provider doesn’t get paid, which means the provider may stop delivering the service my son needs.

The Bill’s existing safeguard — that the CEO must not require information that would unreasonably interfere with a person’s privacy — does not address this. My concern is not about privacy. It is about the possible lack of capacity to respond during the difficult periods that are an inherent part of raising autistic children.

Recommendation 3: The Committee should recommend an amendment requiring that:

(a) any request for further documentation must specify why the information is relevant to the particular claim and must be proportionate to the amount claimed;

(b) the CEO must make reasonable adjustments to the timeframe and format of documentation requests for participants (or their nominees) where disability-related caregiving demands affect capacity to comply; and

(c) payment may not be refused solely on the ground of non-compliance with a documentation request where the nominee or participant has requested additional time or made reasonable efforts to comply.

This is consistent with Australia’s obligations under the Convention on the Rights of Persons with Disabilities and with the reasonable adjustment framework in the Disability Discrimination

Submission 707

Act 1992. A scheme designed for people with disability should not penalise the practical realities of disability and caregiving in its own administrative processes.

Permanence and autism One of the changes in this Bill relates to how the NDIA determines whether a person’s disability is, or is likely to be, permanent. Under the proposed approach, a person may be expected to undertake available treatments before their condition is accepted as permanent - and “available” may include treatments that are unaffordable or not accessible in their area.

My sons are autistic. Autism is a neurodevelopmental condition. It is not an illness to be treated or cured. It is a permanent feature of how their brains work - something that was true before diagnosis, will be true after every therapy session, and will be true for the rest of their lives.

The therapies my sons access through the NDIS - [e.g. “occupational therapy, speech therapy, psychological support”] - are not treatments aimed at making them non-autistic. They are supports that help them navigate a world that was not designed for the way they think and process information. There is a fundamental difference between supporting a person to develop skills and strategies, and “treating” a condition with the expectation that it will resolve.

I am concerned that the permanence provisions in this Bill, combined with the broader recent political rhetoric about NDIS “overdiagnosis,” could be used to challenge the eligibility of autistic people - particularly those whose autism is described as “Level 1” or who have developed coping strategies (often at enormous personal cost). The expectation that a person try all “available treatments” before being considered permanently disabled is conceptually incoherent when applied to a lifelong neurodevelopmental condition.

Recommendation 4: The Committee should recommend that the Bill include a provision clarifying that:

(a) neurodevelopmental conditions, including Autism Spectrum Disorder, are presumed permanent for the purposes of NDIS eligibility; and

(b) functional improvements resulting from NDIS-funded supports do not constitute evidence that the underlying condition is impermanent or amenable to treatment - to prevent the perverse outcome that effective early intervention or capacity building is used as grounds to remove a person from the scheme.

Delegation to rules: we cannot scrutinise what does not yet exist Several of the most significant provisions in this Bill - including what constitutes “regulated promotional conduct,” the criteria for banning orders, and the process for plan variation - are defined not in the Bill itself but by reference to rules that have not yet been drafted.

Submission 707

I understand that legislation often works this way. But the effect is that this Committee, and the people making submissions to this inquiry, are being asked to assess a framework without being able to see the detail that will determine how that framework actually operates. I cannot tell the Committee what the anti-promotion rules will mean for my ability to find good providers for my sons, because those rules do not yet exist.

This matters because delegated legislation - rules and instruments made by the executive receives significantly less parliamentary scrutiny than primary legislation. Rules are disallowable, but in practice they often take effect before parliament has an opportunity to examine them closely.

Recommendation 5: The Committee should recommend that rules made under the following provisions be subject to a mandatory tabling and waiting period of at least 30 sitting days before commencement:

Rules defining regulated promotional conduct
Rules prescribing banning order suitability criteria
Rules governing the circumstances in which plan funding may be decreased This does not prevent the Government from making these rules. It simply ensures that parliament - and the disability community - has a genuine opportunity to scrutinise them before they affect participants.

Recommendation 6: The Committee should recommend that the Minister be required to table, alongside any such rules, a statement setting out the consultation undertaken with people with disability and their representative organisations, and the advice of the NDIS Independent Advisory Council.

Information access and the anti-promotion power The Bill creates a new power for the NDIS Quality and Safeguards Commissioner to issue “anti-promotion orders” preventing a person from engaging in “regulated promotional conduct” related to NDIS supports. I understand this is directed at predatory or misleading marketing by unscrupulous providers.

As a parent of autistic children, I want to explain how I actually find services and make decisions about my sons’ supports. I rely heavily on other parents. I find providers through word of mouth, through disability-specific Facebook groups, through community information sessions, through recommendations from other families who have children with similar needs. When a new provider starts offering a service in our area, I hear about it because someone shares a post, or because the provider presents at a parent group, or because another family tells me their child had a good experience.

Submission 707

I also rely on information from advocacy organisations, from disability lawyers when I need to understand my sons’ rights, and from support coordinators who recommend services they know to be effective.

I am concerned that depending on how “regulated promotional conduct” is defined in the rules, some of these information channels could be captured. If providers are restricted from sharing factual information about available supports, or if the definition is broad enough to cover community information-sharing, the effect would be to make it harder for families like mine to find appropriate services - which is the opposite of what an integrity measure should achieve.

Recommendation 7: The Committee should recommend that the Bill include express exemptions from the definition of regulated promotional conduct for:

(a) factual information provided by registered providers about the supports they offer, where that information is not misleading or deceptive;

(b) information provided by disability advocacy organisations about NDIS entitlements or access; and

(c) information provided by legal practitioners in the course of providing legal advice or representation to participants or their families.

What these changes mean for our family

The NDIS has given my sons access to the support they need to grow, learn, and participate in their community. It has given me the tools to help them build the skills they will need as adults. It has meant that their autism is not a barrier to a meaningful life - it is simply part of who they are, supported appropriately.

What keeps me awake at night is the thought that this support could be eroded - not because my sons’ needs have changed, but because of political decisions about cost. I have watched the rhetoric shift over the past two years, from “the NDIS is a world-leading reform” to “the NDIS is unsustainable.” My sons did not become less disabled when the budget projections changed.

I am asking the Committee to ensure that this Bill, which is presented as being about integrity and sustainability, contains genuine safeguards for the people whose lives depend on the scheme. Integrity must mean more than preventing fraud. It must also mean that participants and their families can trust that the system will not be used against them.

I do not have confidence that the current drafting or the intentions behind it, provides that trust.

Conclusion

Submission 707

I support the objectives of scheme integrity and sustainability. I want the NDIS to be there for my sons when they are adults. But I am asking the Committee to recognise that sustainability cannot be achieved by transferring risk and uncertainty onto participants and their families.

The amendments I have recommended do not prevent the Government from pursuing its stated objectives. They simply ensure that:

funding reductions are connected to genuine changes in need, not administrative convenience
administrative processes accommodate the realities of disability and caregiving
neurodevelopmental conditions are recognised as permanent
critical rules receive meaningful scrutiny before they take effect
families retain access to the information they need to make good decisions These are modest safeguards. They should not be controversial. I ask the Committee to recommend them.

Thank you for considering this submission.

24 May 2026

I request that this submission be published with my name withheld.