Senate Community Affairs Legislation Committee

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

My name is . I am the mother and full-time primary carer of , who is 20 months old. I am writing this submission as a family living inside the NDIS right now — not as advocates or peak bodies, but as the parent of a child whose life depends on what this scheme does and does not fund.

 has quadriplegic cerebral palsy at GMFCS Level V — the most severe classification on the Gross Motor Function Classification System. She also has global developmental delay, complex ocular conditions, and is under cardiac surveillance. She requires full carer assistance for every aspect of daily life. She cannot sit, stand, or walk unaided. She is, by every clinical and legal measure, a person with permanent and significant disability — exactly the person the NDIS was designed to serve.

We are currently engaged in an Administrative Review Tribunal process (ART ) to challenge the NDIS’s repeated refusal to fund the therapy hours and support worker hours that ’s treating team has recommended. While we fight that process, I help deliver ’s therapy program at home — physiotherapy, occupational therapy, speech pathology, vision therapy — under clinical delegation, without formal support, in a rural area of Tasmania, with no family network, and with a four-year-old and a full-time working partner.

We support the long-term sustainability of the NDIS. We understand it must be protected. But we write this submission because several provisions of this Bill, as written, would make ’s situation significantly worse — and because our family’s experience illustrates precisely the gap between what the government says this Bill will do and what it will actually do to the most severely disabled Australians.

Our Concerns About the Bill — How Each Change Affects

Financial Sustainability as a Legal Test

The Bill amends Section 3(1)(d) to add the words “so far as is consistent with the financial sustainability of the scheme.” These words have never appeared in the NDIS Act before.

For our family, this change is not abstract. ’s NDIS plan has already been determined by an internal reviewer who declined to fund adequate therapy. The NDIA has already behaved as though a financial sustainability test exists. This Bill will write it into law.

We are concerned that this amendment will entrench the practice of rationing support to severely disabled individuals on the basis of budget, rather than on the basis of assessed need. For a child at GMFCS Level V, who is already demonstrably underfunded, a financial

Sustainability Override

Sustainability override of the reasonable and necessary criteria is not a safeguard. It is a mechanism to deny her what she needs.

What this means for :

The NDIA has already denied her adequate funding citing value for money. Writing financial sustainability directly into the Act’s objects gives future decision-makers stronger legal footing to do so again - and makes it harder to challenge.

Restrictions on Unscheduled Plan Reassessments

From July 2026, the Bill significantly limits unscheduled plan reassessments, which will only be supported in exceptional circumstances. Plans will no longer roll over, and unspent funding will not carry forward.

For families like ours, unscheduled reassessments are not a mechanism for gaming the system - they are the only tool available when a child’s clinical needs change faster than a plan review cycle permits. is 20 months old. Children with complex cerebral palsy change rapidly. New equipment needs emerge. Therapy goals evolve. Medical conditions develop. The plan that was written when she was 12 months old does not reflect her needs at 20 months.

We are also currently in an ART process specifically because ’s plan does not adequately fund her needs.

Restricting our ability to seek a reassessment - outside the ART process, which is costly and slow - would remove a critical safety valve for families in exactly our position.

What this means for :

If the ART process does not fully resolve her funding gaps, and her needs change significantly before her next scheduled review, we may have no mechanism to address that.A 20-month-old with complex cerebral palsy cannot wait 12 to 24 months for a scheduled review if her situation changes.

Budget Resets for Capacity Building and Social/Community Participation

From October 2026, budgets for social and community participation will be reset, with overall reductions expected. Capacity building daily activity budgets will also be reset as part of new framework planning from April 2027.

Capacity Building - Improved Daily Living is the funding category that funds ’s therapy. It is currently the most contested part of her plan and the subject of our ART proceedings. The current allocation of 112 hours per year - approximately 2 hours per week - is, in our submission and that of ’s treating team, clinically inadequate for a GMFCS Level V child in the early intervention window.

Furthermore, the introduction of Social and Community Participation supports through the NDIS has fundamentally changed how Australia views disability. Disabled people are no longer hidden away or excluded from everyday life — they are visible, valued members of their communities, participating in playgrounds, libraries, swimming lessons, music groups, appointments, family outings, and social activities alongside their peers. These supports do not simply provide “activities”; they create inclusion, connection, dignity, and equal opportunity.

If a family is physically, emotionally, or financially unable to take their child out safely and consistently, what happens then? Is a child like expected to remain isolated at home, unable to participate in meaningful social experiences purely because of the extent of her disability? Removing or restricting these supports risks reversing a decade of progress toward inclusion and increasing the stigma and invisibility historically experienced by disabled people and their families.

What this means for :

We are fighting for adequate therapy funding right now. If capacity building budgets are reset under a new framework before our ART matter is resolved, or before ’s plan is adjusted to reflect her actual needs, we risk those gains being undone by a standardised reset that does not reflect her severity of impairment.

New Framework Planning and Support Needs Assessments

From April 2027, NDIS plans will be created through a new framework using standardised support needs assessments. The government has described these as more equitable and consistent.

Equity and consistency are important values. We do not oppose them. Our concern is with what consistency means in practice for participants at the most severe end of the spectrum.

The current planning system is broken in a specific way: outcomes depend heavily on which planner a family is assigned. Two families with identical clinical evidence and identical disability severity can receive completely different plans. We have experienced this directly. This is a real problem that needs fixing.

But standardisation carries its own risk: will the standard be set by reference to the average participant, not the most severely impaired? A standardised plan that is appropriate for a child with mild-to-moderate disability is not appropriate for a child at GMFCS Level V. Consistency must not come at the cost of individual assessment.

What this means for :

We need assurance that the new framework will produce plans that reflect the actual needs of participants at GMFCS Level V — not plans that are consistent across the full range but adequate only for participants with moderate impairment.

Eligibility Reassessment for Current Participants

From January 2028, eligibility for the NDIS will be reassessed for current participants as plans come up for renewal, based on functional capacity rather than diagnosis alone.

s diagnosis — quadriplegic cerebral palsy at GMFCS Level V — is permanent. A functional capacity assessment, correctly administered, will confirm profound and permanent impairment across all domains. We are not concerned about `s eligibility for the scheme.

I am concerned for the 160,000 people to be transitioned out of the scheme. The government says they will receive supports through Foundational Supports and the Thriving Kids program instead. Will they even exist in time?

What this means for `:

will almost certainly remain eligible. But the collateral damage of removing 160,000 participants from a scheme without first building the alternative services means the resources and specialist capacity that also relies on — therapy providers, assistive technology suppliers, specialist services — may be significantly disrupted.

What We Have Already Lost — Due to Underfunding

We do not write this submission as people who have been failed by a theoretical future system. We write it as a family that has already been failed by the system as it currently operates — and who fear that this Bill will make that failure permanent and systemic.

We lost our paediatric occupational therapist because `s NDIS funding was not adequate to sustain the sessions. Paediatric OT specialists in northern Tasmania are extremely scarce.

She is gone.

We lost our speech therapist for the same reason. A paediatric specialist who understood `s dysphagia, her AAC needs, and her specific communication profile.

Funding ran out.

We trialled hydrotherapy. ` responded beautifully — more clearly and positively than to almost any other modality. We could not sustain it without funded sessions.

We self-funded `s first intensive therapy program at the Centre of Movement in Brisbane because the NDIS would not cover it. That three-week program produced more developmental progress than months of weekly therapy.

We have exhausted our personal savings.

We cannot fund a second without external help.

These are not abstract funding gaps. They are specific, named supports that had, that her treating team recommended, that produced real results — and that were taken away because the NDIS has consistently determined that the cost is not justified.

The Bill does not address any of these failures. It does not reform the planning process that produced them. It does not create accountability for decision-makers who ignore clinical evidence. It does not fix the problem the CEO of the NDIA herself identified — that NDIA staff often do not have time to read the medical reports families are required to provide.

Instead, it restricts reassessments, resets budgets, and introduces a financial sustainability test. For our family, these changes do not feel like protection. They feel like the formalisation of exactly the barriers we have spent the past year fighting through the ART.

What the NDIS Was Supposed to Be — And What It Must Remain

The NDIS was built on the principle that Australians with permanent and significant disability should receive the individualised support they need to live a good life — not the support that fits a budget, not the support that is convenient for a planner, but the support that reflects who they are and what they need.

   is 20 months old. She is in the most critical window of neuroplasticity she will ever

experience. The therapy she receives now — or does not receive — will shape the rest of her life.

She is exactly the person the NDIS was designed to serve.

She has permanent, severe, multi-system disability. She has no prospects of improvement without intensive early intervention. She has no access to specialist services in her community. She has no family network outside her immediate parents and sibling. She has a primary carer who is burning out delivering a clinical program, without training, without adequate support, without respite.

We are not asking for more than she needs. We are asking for what her treating team has recommended, what the clinical evidence supports, and what the original intent of the NDIS requires.

We ask the Committee to consider what “securing the NDIS for future generations” actually means. It cannot mean building a scheme that is financially sustainable but clinically inadequate for the people it is supposed to serve. It cannot mean reducing costs by restricting access for participants who are already underfunded.

Securing the NDIS for future generations must mean securing it as a scheme that genuinely meets the needs of people with permanent and significant disability. For children like , those means intensive early intervention, adequate therapy hours, skilled support workers, and a planning process that actually reads the clinical evidence.

What We Ask of the Committee

We make the following requests of the Senate Community Affairs Legislation Committee:

• Require the government to publish, before this Bill is passed, the specific support levels that will be generated by the new functional capacity assessment tool for participants at GMFCS Level V and equivalent severe functional profiles — so that families can assess whether the new framework will adequately fund participants with the highest support needs.

• Amend or remove the financial sustainability override in Section 3(1)(d). The reasonable and necessary criteria in Section 34 of the NDIS Act already contain value for money and proportionality requirements. A separate financial sustainability test creates a mechanism for rationing support to individuals that is not consistent with the scheme’s foundational purpose.

• Ensure that restrictions on unscheduled plan reassessments include clear and accessible exceptions for participants with complex, rapidly evolving needs — particularly young children with severe physical and neurological disability in the early intervention period.

• Require that the new support needs assessment framework include independent oversight and review mechanisms, so that participants who receive an assessment that does not reflect their clinical evidence have a meaningful and timely pathway to challenge it.

• Do not reduce Capacity Building — Improved Daily Living budgets for participants at the most severe end of the functional spectrum. This funding category is the primary vehicle through which early intervention is delivered for children with complex cerebral palsy. Any reduction will have direct, irreversible developmental consequences.

• Ensure that Foundational Supports — including services to replace those lost by any NDIS participants transitioned out of the scheme — are operational and accessible in rural and regional Tasmania before eligibility reassessments begin in January 2028. Currently, they are not.

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We ask the Committee to ensure it does not.

May 2026