Submission to the National

Disability Insurance Scheme

Amendment (Securing the NDIS for

Future Generations) Bill 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au Date: 29/05/2026

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a parent and carer to an NDIS participant with complex disability related needs and write to outline the harm this Amendment Bill will cause if it passes Parliament. This Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny and amendment before it proceeds.

My daughter, who has Gatad-2b associated neurodevelopmental disorder and Epilepsy with Developmental Epileptic represents one of the original group’s of intent of the NDIS — those with permanent, significant, and complex disabilities requiring lifelong, individualised disability support. Sustainability must not come at the expense of their safety, dignity, or human rights. Australia must PROTECT People with Profound Disability.

• I support the call for a protected cohort of participants requiring 24/7 high-intensity support.

Blanket Funding Cuts Or Ratio Changes Cannot Safely Apply To People With Severe

intellectual And Communication Disabilities.

Protection Of This Cohort Is Essential

to Prevent Injury, Abuse, Crisis, Or Institutionalisation.

Caring For An Individual Like Our Daughter Far Exceeds Ordinary Parenting — Constant

supervision, Overnight Care, Medical Management, And Communication Support Are

constant And Unrelenting. These Extensive Responsibilities, Above And Beyond

‘Parental Responsibility’ Must Be Recognised As Disability-Related Care, Not Typical

parental Duties. The Proposed Provisions Risk Making The Extraordinary Work Of

carers Invisible And Would Deny Essential Supports.

The Rules Put Forward Place Adults With Profound Disability And Ageing

families/parents At Risk Of Harm As The Burden Is Placed Back On Ageing Parents, threatening Their Health And Independence. Reduced Ratios Or Funding Directly

compromise Safety And Participation For Individuals Like My Daughter – So Many examples Could Be Provided Although Some That Come First To Mind Are Choking Risk

during Unscheduled Mealtime Management, Walking Out Onto A Road Unscheduled, putting Non-edible Items Into Her Mouth And Choking, Going Off With Strangers, Not receiving Her Medications (and Therefore Having More And Severe Seizures Which may Lead To Death) And Not Having Personal Care Needs Attended To.

Supported Independent Living (SIL) Arrangements Depend On Specific Staffing Ratios for Safety And May Have Been An Option For Our Daughter Moving Forward However block-funded Or Standardised Models Remove Choice And Accountability. Continuing in Our Current Situation Without SIL Funding Or With Reduced Funding Will Be Impossible For Our Family And For Our Daughter’s Safety. Changes To Rules Will Abolish Reasonable Options For Her Soon, Options That Would Have Allowed Her To Live A Happy And Fulfilling Life.

• Protection of our Allied Health and Behaviour Supports is crucial.

• Speech therapy,

• occupational therapy, physiotherapy, dieticians and behaviour support help us to

• maintain function and safety. Cuts to these services will undermine communication,

• increase behavioural risks, and reduce independence. They are also likely to then

• result in increased needs in other areas due to fastest regression and deficits

Our daughter, like many, has a Communication Disability and requires extensive safeguarding. Individuals like our daughter with severe communication disabilities require extra safeguards before any funding or policy changes occur.

Communication supports must be central to safety, behaviour management, and dignity. As a ’multimodal communicator’, support workers with experience, knowledge and skill as communication partners assist our loved ones to communicate inside and outside of their residence, participate in the community, buid relationships, get across their needs, wants, desires and live their lives fully.

Access to appropriate and skilled allied health practitioners also help to build on the knowledge and Augmentative Alternative Communication (AAC) skills that our daughter has and assists in empowering those around her to communicate holistically with her.

I support calls for independent review rights for all plan changes and advocate for parliamentary oversight and co-design with disability communities before new rules take effect.

Maintaining the current NDIS will continue to enable safety, participation, and family wellbeing. The real-world consequences of proposed cuts — loss of employment, exhaustion, isolation and risk of serious harm are real and I ask you to please consider these in this senate. As you work through and consider EACH proposed change, I ask you to take a few moments to reflect on what you would want, even as a minimum, for your child, your loved one should they need disability services. You just never know when this could affect you. It only takes a medical event – a stroke, 3

• a cardiac arrest, an accident, an Epileptic Seizure, a medication error and you or
• your loved one could be the next one applying to the NDIA for support.

Some say it the ndis is unsustainable – in its current form I agree however, an internal review would show that there are many changes to the current administrative burden f the NDIA alone that could save A LOT of money, next focus on the dodgy providers and leave the most vulnerable alone.

Parliamentary Scrutiny and Transparency

The consultation period for the Amendment Bill is two weeks, which is insufficient to allow for appropriate consultation, considering accessibility and communication needs. The Australian Government Guide to Policy Impact Analysis states that consultation should occur for a minimum of 30 days where possible.

The short timeline impacts me given the significant stressors already in our lives as carers to our daughter with severe and lifelong disability and disability-related health needs. Our daughter has recently required surgery and has also been struck down with a severe chest infection secondary to the limitations of her underlying condition and therefore finding spare time to attend to this submission has been limited and difficult.

Recommendation:

Amend the consultation period for a best practice minimum of 30 days.

Key decisions left to ministerial instruments, not law

The issue:

The Bill allows Ministers to change who gets NDIS support (Schedule 1 Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule 3) by signing an instrument, without going back to Parliament. The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written.

How This Affects Participants

The decisions that shape the lives of participants, whether they qualify for the NDIS and what supports they can access, could be changed without parliamentary debate or public scrutiny. Participants may not know supports or eligibility rules have changed until their plan is affected.

What may seem to be simple changes to this will have dire consequences for our family. If supports are easily removed, I will no longer be able to participate in my 5 day per fortnight work commitments, and this will mean financial demise for us (already living with tight budget and foregoing any luxuries). It will then place further pressure on our marriage which has already faced more challenges than most will experience over decades. Our daughter will be without the care that currently sees her experience and live life to the best of her ability despite the many challenges she experiences each day. I ask you to think about this. What if this was YOUR loved one at risk? Your family… Your marriage.

Recommendation:

Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.

Existing participants face narrower criteria and fewer rights

to challenge decisions

The issue:

The Bill changes the rules for existing NDIS participants and makes it harder to challenge some decisions about supports and funding. It also restricts when you can request a reassessment, removes review rights for automatic plan renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8).

Combined with restrictions on reassessment requests (Part 2), automatic plan renewals without review rights (Part 5), and unreviewable funding reductions (Part 4), existing participants face narrower criteria with significantly fewer avenues to challenge decisions about their supports.

How This Affects Participants

This does not protect participants already on the

NDIS, who could be reassessed under stricter rules. If someone’s funding is reduced

or their plan renewed automatically, they may have limited or no ability to challenge

that decision. This could make it harder for people to get extra support when their

circumstances or disability change.

Already, each year the stress we face preparing for and going through reviews for

our daughters NDIS plan is excruciating. Each year we face decisions and changes

that are made by unqualified planners yet have immense effect on our daughter’s

everyday life. On many occasions we have had to challenge the NDIS on decisions

to have reasonable and necessary supports granted – providing the evidence based

information required in our rebuttal and yet taken 2 or 3 times back and forward –

wasting the time and money of allied health therapists and NDIS resources to

eventually have the supports rightly approved. A hugely costly and time wasting

exercise for the NDIS and for our family and our daughters plan – funds that could

have spent meeting her needs instead of in debate. On a few occasions we have

had to request ‘Change of Circumstance’ reviews, for example when our daughter

Epilepsy and Developmental Epileptic Encephalopathy (directly related to her

Syndrome) escalated so much so that we required increased supports to manage

her care.

If this rule change goes ahead we will no longer be able to reach out during times of

our daughters greatest need.

Recommendation:

Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments preserved.

Unreviewable ministerial power to cut funding across all support categories

The Minister can reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4).

This applies across all budget categories. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5).

How this affects participants:

A participant’s community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. Participants who save unspent funds across plan periods for high-cost items will lose that ability entirely.

This will mean that essential equipment will be missed as the supply of such equipment is slow with long waitlists. It also means that we are unable to build ANY buffer that allows us to increase supports during times of greater need – for example when we require increased active nights (in a plan where only non-active hours are provided a few nights a week, yet it is acknowledged that active hours can and will be required). There’s also NO buffer room provided for me to fall back on if I as our daughter’s primary caregiver becomes unwell again – following on from 5 cancer diagnosis’, the stakes are high.

Recommendation:

Require that unspent funds carry over at plan renewal for participants saving for high-cost items and require independent review rights before any funding reduction takes effect.

Requirement to exhaust treatment options before eligibility

The issue: A person with disability will need to exhaust treatment options before they can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of whole-of-person assessment, replaced by single eligible impairment consideration (Schedule 1 Part 3). The note that previously acknowledged environmental factors

and other ineligible impairments could affect support needs will be removed

(Schedule 1 Part 3).

How this affects participants: People with disability will need to prove their

impairment cannot be treated before they access the NDIS. Once in the scheme, their supports will only be assessed against a single eligible impairment rather than their whole experience. A person’s individual circumstances will not be considered, including ability to pay for treatment, where they live or whether treatment is actually available to them.

Having multiple COMPLEX conditions makes it impossible for our daughter’s needs to be met at all if considering single eligibility impairments. Having a RARE and complex condition means many and multiple impairments and her life will be at significant risk of serious harm if this is passed. Due to the rarity of her condition she does not fall into a ‘box’ whereby a treatment that may be appropriate for some or many just doesn’t work for her. It would be our wish that it was this easy however unfortunately this is not the reality for many with rare, complex disability and disability related health needs.

Recommendation: Do not proceed with a requirement to exhaust “appropriate” treatment options – there are no safeguarding measures around participant harm due to side effects or complications, a participant’s financial ability to pay, or their geographic capacity to access treatments.

Unvalidated functional capacity assessment tool risks misidentifying need

The issue: The Bill shifts assessment from whole-of-person consideration to a single eligible impairment (Schedule 1 Part 3). Read together with the eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment.

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The named assessment tool is the Instrument for Classification and Assessment of

Support Needs (I-CAN). I-CAN requires validation to ensure it will sufficiently identify

the needs of all people with disability, including those whose needs may be

fluctuating or episodic and may not be captured through a point-in-time assessment, and to ensure it is culturally appropriate for First Peoples with disability.

How this affects participants: If the assessment tool does not accurately capture

the full extent of a person’s disability, including needs that fluctuate or vary over time,

a participant may be found ineligible or have their supports undercounted, with no

guarantee the result reflects their actual experience.

In the recent Senate enquiry into Epilepsy In Australia you will have heard from

many professionals and families around the concerns of lack of understanding of

Developmental Epileptic Encephalopathy - a serious consequence of severe

Epilepsy resulting in MANY permanent impairments. The degree of these

impairments is up and down – for example our daughters ability to walk may be

better on 1 day out of 10 – fatigue and neurological demise on another day meaning

she is fully wheelchair reliant. How can her needs be truly assessed and reflected if

an I-CAN assessment is completed on her ‘best’ day? We recently saw this in a video fluoroscopy – carried out on a ‘best’ day and recommending she could go back

to non-thickened fluids and regular diet – as a consequence she choked on regular food the following day an d now has aspiration/chest infection from thin fluids. A concrete example of how assessing these individuals in any ‘given’ time just does NOT work.

Recommendation: Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those with episodic or fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.

Supports cut before replacement system is ready

The issue: From 1 October 2026, the government has announced funding for social,

civic and community participation supports will be cut by 50 per cent and capacity building daily activities by 10 per cent for all participants, reductions that will be implemented through the ministerial instrument power in Schedule 1 Part 4. The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.

How this affects participants: Supports that help participants connect with their community, build skills and maintain independence may be cut before anything exists to replace them, leaving carers and families with greater responsibilities and no additional support. These supports are often what help people stay visible, connected and safe.

This will take inclusion in Australia (aka ‘The Lucky Country’) back 80 years.

Individuals will become institutionalised again and removed from society. They will be stuck in their homes, face isolation and depression and likely death from no or inadequate care.

Taking this away from our daughter and her plan will significantly reduce her ability to participate in her community as she currently requires 1:1 – 1:2 care. It will be impossible for her to be cared for safely in an environment where only lesser ratios are available and her fluctuating needs in one day make it impossible for her to attend a day centre successfully. This will mean I can no longer work, she will become isolated and lose her sense of community, meaningfulness. She deserves to feel satisfaction in helping out and being a valued part of her community

Recommendation: Require that no reductions to community participation or capacity building supports take effect. Foundational Supports need to be fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports and at that time, those whom the NDIS was originally built for can be adequately funded to access the community as they should be.

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Thanking you for your time and consideration.