Submission 2421
Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by:
Date: 31 May 2026
Publication: I do not consent to this submission being published with my name.
I acknowledge that reforms may be necessary to ensure the long-term sustainability of the National Disability Insurance Scheme (NDIS). However, I do not support the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026 in its current form and urge the Committee to recommend substantial amendments before it proceeds.
I am a NDIS participant due to physical disabilities arising from Rheumatoid Arthritis, Fibromyalgia, and Psoriatic Arthritis. I am also the sole carer and mother of two adult sons who are NDIS participants. One has intellectual disability, Autism Spectrum Disorder, MYTL1 Syndrome, and an NAA15 gene variant. The other has intellectual disability and an NAA15 gene variant.
In addition, I am the legal guardian and mother of my 16-year-old son, who was placed with me by Child Protection when he was 12 months old. He is also a NDIS participant due to Juvenile Rheumatoid Arthritis and Autism Spectrum Disorder Level 2.
As both a participant and a lifelong carer, I am deeply concerned that the proposed changes contained in this Bill could have significant negative consequences for my family and many others who rely on the NDIS.
I am in a unique position to compare life under the previous disability support system with life under the NDIS. Before the NDIS, my adult sons had little access to meaningful support. Assistance was often determined by what governments were willing to provide rather than what individuals actually needed. Families were frequently required to fight for even basic supports, and access to therapies was often limited to those who could afford to pay privately.
Young people leaving school were commonly directed into organisations that claimed expertise in disability services but often lacked a genuine understanding of the needs and aspirations of people with disability. Unfortunately, many of these same organisations now operate within the NDIS market. One of my sons was forced to leave two such organisations because they were not meeting his needs. My other son received virtually no support beyond what I was personally able to provide.
The NDIS has changed that. It has allowed my sons to participate in their communities, develop skills, build relationships, and access support when they need it. It has given
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them purpose, independence, and a sense of belonging. While challenges remain, they are now recognised as valued members of society rather than being excluded from it.
For this reason, I am concerned that aspects of this Bill risk moving disability support backwards toward a more restrictive and institutional approach. Many people with disability and their families may reasonably perceive these changes as signalling that their needs are viewed primarily through a cost-containment lens rather than as investments in inclusion, participation, and human dignity.
I recognise that reforms are necessary and that rising costs must be addressed. However, any reforms must protect the people the Scheme was designed to support.
In my view, greater attention should be directed towards the providers and corporations that profit from disability services. Too many organisations treat participants as sources of revenue rather than individuals requiring support. Disability services should not be driven primarily by profit. When governments outsource care without sufficient oversight, costs can increase, participant plans can be depleted by excessive charges, and opportunities for exploitation emerge. Participants should not be blamed for systemic failures that governments had the opportunity to prevent through stronger regulation and oversight of the providers of support from the beginning.
Throughout recent media and public debate about the NDIS, participants have too often been portrayed as the cause of increasing costs. This narrative is both unfair and damaging. People with disability already face significant challenges every day. Families seeking support should not be made to feel like burdens on society.
My own experience with agency-managed services has often been frustrating. Support workers change frequently despite assurances of continuity. At times workers have had limited English proficiency, making communication difficult for my sons. These experiences highlight broader systemic issues that cannot be solved by reducing participant supports.
There are also substantial hidden costs within the NDIS that receive far less public attention. These include the costs of outsourcing administrative functions, engaging external contractors, and defending decisions that are later overturned through review processes. When participants are forced to challenge decisions because evidence has not been properly considered, significant public resources are consumed. This suggests that attention should also be directed towards improving accountability within the system itself.
My specific concerns regarding the Bill are outlined below.
- The Inclusion of the Words “Directly Arising” The inclusion of the words “directly arising” in relation to participant supports is deeply concerning and should be removed.
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This wording departs from the whole-person approach that has been central to the NDIS. Many participants live with multiple disabilities, chronic illnesses, mental health conditions, behavioural challenges, or genetic disorders that interact with one another. These conditions do not exist in isolation. Rather, they overlap and combine to determine a person’s functional capacity and support needs.
For example, a participant may enter the Scheme on the basis of one primary disability while also living with chronic pain, fatigue, mental health challenges, neurological conditions, or other impairments. It is often impossible to separate the impact of one condition from another because they are interconnected.
The introduction of the words “directly arising” risks creating artificial distinctions between disabilities and support needs. Supports could potentially be denied because a need cannot be attributed exclusively to a participant’s primary disability, even when that support is essential to independence, safety, and community participation.
This proposal is particularly concerning for participants with intellectual disabilities, autism, genetic conditions, neurological disorders, chronic illnesses, and multiple diagnoses.
I am concerned that this amendment may operate primarily as a cost-containment measure rather than a participant-centred reform. It may also create unnecessary disputes as participants and families attempt to prove which condition is responsible for a particular support need.
I urge the Committee to recommend removing the words “directly arising” from the Bill or, at a minimum, introducing clear legislative safeguards to ensure that participants with multiple disabilities and complex support needs are not disadvantaged.
- Ministerial Powers I am concerned by provisions that would grant the Minister broad powers to alter funding arrangements and exclude entire groups of participants from support.
Decisions affecting vulnerable Australians should be subject to appropriate parliamentary scrutiny, transparency, and independent oversight. No single Minister should have the ability to make far-reaching changes to participant supports without adequate safeguards and accountability mechanisms.
- Suspension and Revocation of Plans I am concerned about provisions allowing plans to be suspended or revoked if participants cannot be contacted within a specified period.
Many participants and carers manage highly demanding lives. They may miss calls because they are attending appointments, caring for family members, working,
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managing health conditions, or simply avoiding unknown numbers due to concerns about scams.
I personally do not answer calls from unfamiliar numbers. Many participants are likely to do the same.
The assumption that participants can always respond immediately demonstrates a lack of understanding of the realities of disability and caring responsibilities. Appropriate safeguards must be included to ensure participants are not unfairly penalised simply because they were temporarily unavailable.
- Reduction of Social and Community Participation Funding I am deeply concerned about proposals to reduce funding for social, community, and civic participation supports by 50 per cent.
In many plans, funding classified under social and community participation is used flexibly to support daily living activities and other essential supports. A reduction of this magnitude could leave participants without sufficient funding to meet their day-to-day needs.
Similarly, some supported employment and day programs can be funded through core budgets. Significant reductions could have serious consequences for participants who rely on these supports.
If adjustments are necessary, they should be undertaken carefully, transparently, and in consultation with participants rather than through broad reductions that risk undermining independence and community participation.
- Eligibility Changes and Reassessments I am concerned by proposals to tighten eligibility criteria and reassess existing participants under new rules.
This creates significant uncertainty and anxiety for people who already live with substantial challenges.
I am particularly concerned about participants like myself who entered the NDIS before turning 65. By the time future reassessments occur, I will be over 65 years of age. The legislation appears to provide no clear protection for participants in this situation.
There should be explicit provisions protecting people who lawfully entered the Scheme before age 65 from losing eligibility solely because they have subsequently reached that age.
- Requirements to Exhaust All Treatment Options
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The proposal requiring individuals to demonstrate they have exhausted all possible treatment options is concerning.
Most people with disability already spend years pursuing treatments, therapies, interventions, and assessments. Some treatments are unaffordable, inaccessible, inappropriate, or potentially harmful. Others have already been tried without success.
Participants should not be required to repeatedly justify the existence of their disability or continually pursue interventions that are unlikely to improve their condition.
- Automatic Plan Renewals and Unspent Funds While automatic plan renewals may appear beneficial, I am concerned about provisions that could result in unspent funds being reclaimed.
Participants often retain some funding as a safeguard against unexpected circumstances. For example, support workers may become unavailable, equipment orders may be delayed, home modifications may be awaiting completion, or emergency care arrangements may become necessary.
If I were hospitalised unexpectedly, my sons would require substantial additional support. Maintaining flexibility within plans is essential to ensuring participants can respond to unforeseen circumstances without being placed at risk. Capital budget amounts for equipment disability modifications and the like which have not be spent need to remain in the budget not be reclaimed.
- Commissioning of Services I am concerned that the proposed commissioning arrangements may reduce genuine participant choice.
Choice and control are central principles of the NDIS. When service options are effectively selected in advance, participants may have limited ability to choose providers that best meet their individual needs.
While stronger regulation of providers is necessary, participants should not lose meaningful choice as a result.
- Restrictions on Plan Reviews I am deeply concerned about limitations on participants’ ability to seek plan reassessments and reviews.
There must always be a mechanism through which participants can challenge decisions they believe are incorrect.
Mistakes occur. Planners are human. Administrative errors can happen. Evidence can be overlooked. Technology-assisted decision-making can also produce errors.
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Participants must retain accessible review rights to ensure fairness and accountability within the Scheme.
- Lack of Detail Regarding Proposed Changes Perhaps most concerning is that many aspects of the proposed reforms have not yet been fully designed, explained, or publicly consulted upon.
Parliament should not be asked to approve legislation of this magnitude without first understanding how key criteria, assessment processes, and decision-making frameworks will operate in practice.
These details should be fully developed, publicly consulted on, trialled, and independently evaluated before legislation is enacted.
Recommendations
I respectfully urge the Committee to:
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Remove the words “directly arising” from the legislation.
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Ensure ministerial powers are subject to appropriate parliamentary oversight and accountability.
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Protect participants who entered the NDIS before age 65 from losing eligibility due to future reassessments.
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Retain participant review rights and access to independent appeal mechanisms.
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Publish and consult on assessment criteria before legislative changes are implemented.
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Ensure emergency and committed supports are protected under any plan rollover arrangements.
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Strengthen regulation and oversight of providers rather than reducing participant supports.
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Conduct meaningful consultation with people with disability, families, carers, and advocacy organisations before implementing major reforms.
Conclusion
The NDIS was established to provide people with disability with dignity, choice, independence, and inclusion. Any reforms should strengthen these principles, not weaken them.
People with disability are not burdens. They are citizens entitled to the same dignity, opportunities, respect, and participation as every other Australian.
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The NDIS should be protected from waste, exploitation, and poor administration. However, reforms must not come at the expense of the people the Scheme was created to support.
Closing
I acknowledge that we need to make sure the NDIS is sustainable into the future. However, I do not believe that the bill as it is should be passed. There are too many things being changed that were thrust upon participants without knowledge or consultation. This Bill as presented will decreases participants opportunity for support and looses the original intent of the NDIS.
I urge the Committee to reject the Bill in its current form and work alongside people with disability, families, carers, and genuine advocates to develop reforms that address waste and exploitation while preserving the rights, dignity, and wellbeing of participants.
I would be only too happy to meet with you to discuss this.
NDIS participant and carer