National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 265
Submission: for National Disability Insurance Scheme Amendment ( Securing the NDIS for Future Generations) Bill 2026 23rd May 2026
My name is and I am an aged pensioner aged 76 and carer of my bedridden 48 year old daughter who suffers from very severe Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and has done so for over 6 years. She is totally dependent on myself and husband for all activities of daily living. We provide 24/7 care for her and are totally exhausted. Our daughter was refused entry to the NDIS on the grounds of “not all treatments tried” and hence no permanence classification.
NDIS does not disclose what treatments can be tried so this lack of transparency makes it impossible to rectify this classification. Note ME/CFS has no cure and there are NO Australian recommended clinical practice guidelines for ME/CFS. Guidelines are currently being developed by the National Health and Medical Research Council ( NHMRC) but none exist now. In addition from Freedom of Information I have discovered that Graded Exercise Therapy (GETS) and Cognitive Behaviour Therapy (CBT) are on the NDIS list of “compulsory” treatments for ME/CFS despite the fact that the former can be harmful and neither are recommended by the major global organisations Emerge Australia, Bateman Horne Centre (US) and National Institute for Health and Care (NICE) in United Kingdom. If these treatments are embedded in the algorithms of acceptance into NDIS then deserving applications will be excluded. And there will be no course of redress if higher appeals are abolished or diminished.
Our daughter would fit the profile of the severely disabled that the new laws intend to prioritise and yet has been excluded.
When we die in there will be no one and no place to care for our daughter.
I am making this submission because the proposed NDIS Bill poses significant risks to disabled people, their families, and the unpaid carers who already carry the majority of the load in Australia’s disability ecosystem. The Key Concerns With the NDIS Bill are as follows;
- Cuts may increase the load for carers. The recommended framework to ignore the context of the applicant/participant in terms of their living conditions, accommodation and supports seems without logic or humanity.
Unpaid carers already carry a $78 billion load - cuts will push us past breaking point. In my case there is no alternative support or accommodation for our daughter. She is not eligible for high needs aged care facility and this is the level of support that she needs. Unpaid carers provide: • 24/7 supervision • behavioural support • emotional regulation • domestic labour • transport • medical coordination • crisis management • case management
We do this without wages, superannuation, leave, or safety nets.
Any cuts to the NDIS do not reduce the need for support - they simply shift the burden back onto unpaid carers, many of whom are already financially and emotionally exhausted.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 265
- Cuts to Social & Community Participation is probably needed to stop the cost blowouts to NDIS but should proceed with caution and consider individual circumstances.
Removing these supports may save money but it will also transfer the cost to carers, hospitals, police, and the community.
- The Bill fails to define “reasonable and necessary” this is one of the most serious structural flaws.
Without a clear definition: • participants cannot understand their rights • planners cannot make consistent decisions • reviews become arbitrary • appeals increase • families live in fear of sudden cuts
A national insurance scheme cannot function on undefined criteria. The Bill must include a clear, legislated definition of “reasonable and necessary.”
- The Bill fails to define “severe and permanent disability”. This omission creates enormous risk.
Without a definition: • eligibility becomes subjective • planners can interpret criteria differently, especially with government directives. • people with fluctuating or complex disabilities may be excluded • up to 160,000 people could be removed from the Scheme without transparent criteria
This is unacceptable in a system meant to protect the most vulnerable.
- The Bill expands Ministerial and Agency powers without adequate safeguards. The Bill allows broad discretion to: • redefine “reasonable and necessary” • change eligibility • impose new rules without parliamentary oversight
This creates instability and fear for participants and carers. Any system that can change overnight without scrutiny is unsafe.
- The real cost drivers are not participants - they are market failures. In NSW , the issue is not a lack of services. There are many providers - but the problem is price inflation and gouging by registered providers.
Examples include: • charging the maximum price cap regardless of skill • inflating travel fees • charging for non-billable time
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 265
• adding administrative fees • offering low-quality lack of standardised or skilled services at premium prices
This is not caused by participants. It is caused by poor market regulation. The Bill does not address: • price gouging • quality control • provider accountability • regional market distortion
Instead, it focuses on restricting participants - the group with the least power.
- Restricting Plan Reviews Is Government Overreach and an Erosion of Human Rights. The Bill and associated policy directions indicate a shift toward: • fewer reviews • longer plan periods without participant consent • reduced ability to request a review • increased thresholds for what counts as a “change in circumstances” • more power for the Agency to refuse or delay reviews
This is government overreach, and it represents a direct erosion of the rights of disabled people and their carers.
Why this is a human rights issue Restricting plan reviews violates multiple rights under the UN Convention on the Rights of Persons with Disabilities (CRPD), including: • Article 12 — Equal recognition before the law • Article 13 — Access to justice • Article 19 — Independent living • Article 28 — Social protection
It denies people the right to challenge decisions that affect their daily lives.
Impact on carers when supports are inadequate: • behaviours escalate • safety risks increase • carers burn out • families collapse under pressure
Restricting reviews forces carers to absorb the consequences of underfunded plans. This is a clear erosion of procedural fairness.
- Human Rights and Disability Discrimination Act Protections the Bill Risks Eroding. The Bill risks breaching multiple rights under the CRPD, including: • Article 5 - Equality and non-discrimination • Article 7 - Rights of children with disabilities • Article 12 - Equal recognition before the law • Article 17 - Integrity of the person • Article 19 - Independent living • Article 20 - Personal mobility • Article 23 - Respect for home and family • Article 24 - Education • Article 25 - Health • Article 26 - Habilitation and rehabilitation • Article 28 - Adequate standard of living and social protection
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 265
The Bill also risks breaching the Disability Discrimination Act 1992, including: • Section 5 - Failure to make reasonable adjustments • Section 6 - Indirect disability discrimination • Section 24 - Discrimination in the provision of goods and services • Section 35 - Detriment based on disability
Restricting reviews, tightening eligibility, and reducing supports disproportionately harm disabled people and their carers.
Recommendations
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Strengthen participant rights • Legislate clear definitions of “reasonable and necessary.” • Legislate a definition of “severe and permanent disability.” Have NDIS disclose treatments for conditions and have these treatments based on up to date national guidelines. Have exclusions for incurable conditions. Why pursue expensive and possibly harmful treatments that are unlikely to improve conditions and create longer wait times for applicants. The result would also be another industry for specialists giving unnecessary reports with no benefit to the patient. • Require parliamentary oversight for any rule changes. Otherwise with a change of government a minister may dismantle NDIS bit by bit. • Guarantee no retrospective cuts and choice and control is not eroded.
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Address the real cost drivers • Regulate provider pricing and quality. • Invest in workforce development. • Improve early intervention access. • Strengthen mainstream inclusion.
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. Protect unpaid carers • Recognise the $78B economic contribution of unpaid care. • Ensure reforms do not increase carer burden. • Provide stability, not uncertainty. • Prevent families from being forced to use their superannuation again. Note many participants/applicants and families are afraid of NDIS, ourselves included.
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Co-design reforms with disabled people and carers, not consultation after drafting - co-design from the beginning.
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Protect the insurance model The NDIS must remain an investment-based system, not a rationing system that is systemic that does not recognise people with disabilities as individuals, inclusive of hidden, neurological diverse disabilities Conclusion Unpaid carers / person with disabilities like me have already sacrificed our health, income, and retirement savings to support our disabled family members / or our own disability . We need relief from this burden - not return us to the days where families were left to fend for themselves.
Every major review that led to the creation of the NDIS - including the Productivity Commission’s 2011 Inquiry, the NDIS Review 2019, and the Disability Royal Commission - was undertaken because the old disability system had failed. Those reviews found that Australians with disability were living in crisis, families were collapsing under the weight of unpaid care, services were inconsistent and unaffordable, and people were being denied basic human rights. The NDIS was created as a direct response to those findings: a rights-based, insurance-driven system designed to provide individualised supports, early intervention, choice and control, and freedom from discrimination.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 265
For this reason, any new legislation must honour and uphold the core findings of those foundational reviews. The Bill must not erode the principles that justified the creation of the NDIS in the first place. It must not return Australia to a system where families are forced to use their superannuation, where disabled people are left without essential supports, or where carers carry the entire burden alone. Instead, the Bill must focus on the real issues identified repeatedly across all reviews: fraud, price gouging, market failure, and provider exploitation. These are the areas where reform is urgently needed - not in restricting participant rights, limiting plan reviews, or narrowing eligibility.
The NDIS was built on evidence, human rights, and the recognition that disability support is both a moral obligation and an economic investment. The findings of previous inquiries must remain the guiding compass. Any reform must strengthen, not weaken, the Scheme; protect, not diminish, the rights of people with disability; and address systemic failures, not punish participants or carers. The NDIS must continue to reflect its founding vision: a fair, equitable, and rights-based system that supports disabled Australians to live with dignity, independence, and full participation in society.
The NDIS is a lifeline. Any legislative change must be consistent with rights, while being cost efficient. I do acknowledge the need to be cost efficient to save the NDIS.
I urge the Committee to amend the Bill to ensure it protects participants, supports carers, upholds human rights, and remains true to the founding vision of the Scheme.
Thank you for considering my submission.
Yours sincerely