Submission Regarding Proposed Changes to the NDIS Act
Introduction
I am a person living with permanent physical disability and Autism, as well as a parent raising two children with disabilities. The NDIS has allowed me to maintain independence, manage my health, care for my family, and participate in my community in ways that would otherwise not be possible.
I am not asking for luxury or special treatment — I am asking for the supports that allow me to live safely, parent my children, and participate in society.
The supports I receive are not luxuries or optional extras. They are essential supports that prevent deterioration in my physical and mental health and allow me to continue functioning safely and independently.
I am deeply concerned that the proposed changes to the NDIS Act will significantly reduce the choice, control, and support available to people living with permanent disabilities. I believe these changes risk creating greater hardship for participants and families while increasing pressure on Australia’s already overstretched healthcare system.
What does the NDIS mean for you right now?
For me, the NDIS means independence, dignity, participation, and survival.
Without the NDIS, my physical condition would deteriorate significantly and I would most likely become confined to a wheelchair. The therapies and supports I currently receive help me maintain mobility, manage pain and fatigue, and continue functioning as a parent and member of the community.
As a mother with a disability raising two children with disabilities, the NDIS has also provided critical support for my family. Support workers have enabled my daughters to participate in the community during periods where I have been physically unable to drive, too unwell, or in too much pain to support them myself.
These experiences have helped my daughters build confidence, independence, and social connection. The NDIS has not only supported my physical health, but also my children’s emotional wellbeing and opportunities to participate in everyday life.
Without these supports, my family’s quality of life would decline significantly.
How do you feel about the proposed changes to the NDIS Act?
I believe the proposed changes remove the core principles of choice and control that the NDIS was originally built upon.
The proposed reforms would give the NDIA greater power to decide what supports participants can and cannot access, while making it harder for people with disabilities to have input into decisions about their own bodies, health, and daily lives.
The changes around “reasonable and necessary” supports create uncertainty and fear for participants who rely on essential therapies and supports to maintain their functioning and independence. Supports that currently prevent deterioration may no longer be recognised or funded in the same way.
The increased reassessment and evidence requirements are also concerning. People with permanent disabilities should not be forced to repeatedly prove conditions that are lifelong and medically established. Constantly having to justify supports creates emotional stress, financial pressure, and trauma for participants and families.
These changes do not make me feel supported — they make me feel like my disability and lived experience are being questioned.
Do you feel these changes have been explained clearly enough?
No. I do not believe the proposed changes have been clearly explained to participants, families, or carers who will be directly affected by them.
Many people living with disabilities are confused and fearful about what supports may be removed, what therapies may no longer qualify, and how decisions will be made under the new legislation.
While I understand the government wants to address fraud and misuse within the system, genuine participants should not be negatively impacted because of failures elsewhere in the system.
People with disabilities should have been properly consulted throughout this process. Those who rely on the NDIS every day are the people best placed to explain what supports are truly essential and what the real-world impacts of these changes will be.
What would these changes mean for you, your family, friends, carers, or community?
The proposed changes would significantly reduce my ability to safely manage my health and participate in daily life.
If supports are reduced, delayed, or denied due to tighter funding rules or reassessments:
I would struggle to attend medical appointments, physiotherapy, hydrotherapy, and essential daily activities.
My husband would need to take time away from work and family responsibilities to care for me and assist with transport and daily tasks.
I would be forced to push my body beyond its physical limits, causing increased pain, fatigue, injury, and deterioration in my condition.
This would create a cycle of worsening health, increased reliance on hospitals and specialists, and greater emotional and financial strain on my family.
The proposed legislation appears focused on reducing costs in the short term, but in reality, reducing preventative supports will likely increase long-term costs to the healthcare system through avoidable deterioration, hospitalisation, and crisis care.
What would happen if your social and community supports were reduced or removed?
If my social and community supports were reduced or removed, I would become increasingly isolated and dependent on my family.
These supports allow me to remain connected to the community, maintain independence, and continue participating in everyday life despite my disability.
Without these supports:
my physical and mental health would decline,
my family would experience increased pressure and stress,
and my ability to participate in society would be significantly reduced.
Removing community supports does not remove disability — it simply shifts the burden onto families, carers, and the healthcare system.
What would happen if your capacity building supports were reduced or removed?
Without capacity building supports, my physical functioning would deteriorate to the point where I would likely become wheelchair dependent.
I rely on weekly physiotherapy, hydrotherapy, and occupational therapy to maintain mobility, manage pain, and prevent further physical decline. These therapies are not temporary treatments — they are ongoing supports that allow me to continue functioning safely and independently.
The proposed changes create uncertainty about whether these supports will continue to be recognised as necessary under the new legislation.
Without these therapies and the support required to attend them, my quality of life would significantly decrease. The pain, fatigue, and physical limitations I currently manage would become overwhelming, and the life I have built for myself and my family would no longer be sustainable.
What would the proposed changes to the definition of “permanence” mean for you?
The proposed changes to the definition of “permanence” are deeply concerning.
I have already undergone extensive medical assessments, treatments, and specialist input. My conditions are permanent and lifelong. I live with a genetic condition that cannot be cured or removed. I am also Autistic, which is a lifelong neurological condition.
The idea that participants may be required to attempt every possible treatment before being recognised as permanently disabled is unrealistic, harmful, and disconnected from the realities of living with disability.
Not all treatments are accessible, affordable, available locally, or medically appropriate. Requiring people to continually pursue treatments simply to prove eligibility places unnecessary stress and burden on people who are already managing complex disabilities.
Permanence should recognise the reality of lifelong conditions and the expertise of qualified medical professionals who have already provided evidence of disability.
Conclusion
I ask the government to reconsider these proposed changes to the NDIS Act and genuinely listen to the voices of people living with disabilities, families, carers, and support networks.
The NDIS has allowed me to live with dignity, independence, and purpose. It has enabled me to manage my disability, raise my children, participate in my community, and avoid greater reliance on the healthcare system.
Reducing access to essential supports or creating additional barriers to receiving them will not improve outcomes for people with disabilities. Instead, it risks increasing physical deterioration, mental health impacts, family stress, social isolation, and long-term healthcare costs.
People with permanent disabilities should not be forced to repeatedly prove their disability or live in fear of losing supports that are essential to daily life and wellbeing.
I urge the government to protect the original principles of the NDIS — choice, control, dignity, inclusion, and support for people with disabilities to live meaningful and independent lives.
Thank you very much for taking the time to read my submission