Submission 66
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: NDIS Participant, Age 23 NSW
- Introduction My name is . I am 23 years old and I have GMFCS IV Cerebral Palsy and profound high-frequency hearing loss. I rely on the NDIS for the supports that allow me to participate in my community, work, maintain my health, and pursue the same independence that every – young adult deserves.
I am making this submission because the proposed changes in this Bill will directly affect my ability to live safely, independently, and with dignity. I am also making this submission because I have lived through the consequences of an incorrect NDIS decision and I know what it costs.
In 2024, I was denied Supported Independent Living (SIL) and Specialist Disability Accommodation (SDA), despite overwhelming evidence of my need. My mother and I spent 11 months fighting that decision through the ART. We finally received a positive outcome, but I have not yet moved into SIL. I am still living in an inaccessible home, still relying on my mother for every transfer, every shower, every toileting routine, every night-time wake-up, and every emergency.
The NDIS has the power to change my life but only when decisions are correct, fair, and based on the reality of my disability.
- My Disability and Daily Life I cannot transfer independently. I cannot access most of my home. I cannot be left alone safely for more than an hour or so. I require assistance with all personal care, toileting, dressing, showering, and mobility. I cannot drive. I cannot use public bathrooms without a transfer device and a second person.
I have strong cognitive capacity and manage my own finances, NDIS plan, and decisions. But physically, I rely on 24/7 access to care. Without someone present, I am at risk of harm, injury, or being unable to respond to an emergency. My mother is my only personal carer. She works full-time and provides every transfer, every shower, every toileting routine, every meal, every medication, every appointment, and every night-time wake-up.
This is not sustainable. This is not independence and this is not what the NDIS was created for.
Submission 66
- My Goal: To Live an Ordinary Adult Life My mother and I have been having age-appropriate discussions about what I want my life to look like and what moving out of home might entail for decades. Not because I don’t love my mother but because I want to be an independent adult.
I want to:
choose my own routines manage my own space build friendships work more participate in my community have privacy have a life that is mine
Right now, I cannot cook, clean, wash, or access most of my home. I cannot build the independent living skills expected of any adult. I cannot safely be alone for extended periods and I cannot grow into the adult I want to be. SDA and SIL are not luxuries. They are the only pathway to independence for someone with my level of physical disability.
- Our 11-Month Fight for SIL and SDA The NDIA’s initial decision to deny SIL and SDA was wrong. It did not reflect my functional capacity, my support needs, or the evidence provided. It took 11 months from S100 to the ART to correct that decision.
During that time:
my independence was put on hold my mental health declined my mother’s health deteriorated I remained trapped in an inaccessible home I continued relying on unsafe levels of informal care
If the proposed reforms had been in place in limiting appeals to process only, not outcome, I would still be without SIL and SDA today. While a placement has yet to become available and I am still be living in an inaccessible home, we know that will likely change in the coming months. Without that decision, my mother would be providing unsustainable 24/7 care indefinitely and the NDIA’s incorrect decision would have stood unchallenged.
This is not a theoretical risk. This is my life.
- Concerns About the Removal of the Right to Appeal One of the most alarming aspects of this Bill is the proposal to restrict appeals so that participants can only challenge the process, not the outcome of an NDIA decision.
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This goes against the fundamental principles of the NDIS Act, which was built on fairness, accountability, and participant rights.
If this rule had existed last year:
I would not have been able to challenge the NDIA’s incorrect decision I would not have been granted SIL or SDA I would be living in an inaccessible home for an indeterminate period of time My mother would still be providing unsafe levels of informal care My future would still be on hold
The right to appeal outcomes is not an administrative detail. It is a safeguard that protects people with disability from incorrect, harmful decisions.
Removing this right will cause real harm to real people.
- Concerns About Cuts to Community Participation The proposed cap on Community Participation funding will severely limit my ability to:
access my community build friendships attend social events participate in activities outside my home develop independent living skills maintain my mental health increase my work hours
Transport alone consumes a significant portion of my funding because I cannot drive. If Community Participation is cut, I will be forced to choose between:
going to work attending therapy seeing friends participating in my community
No young adult should have to choose between employment and social connection.
Community Participation is not optional. It is essential for wellbeing, independence, and inclusion.
- Comments on Other Provisions of the Bill
7.1 Functional Capacity Definition
My disability is lifelong and stable, but my needs fluctuate with fatigue, pain, and environment. A narrow definition risks excluding people like me.
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7.2 Support Determinations
Predetermined supports may reduce flexibility. Flexibility is how I stay safe and participate in life.
7.3 Plan Renewal and Reduced Reviews
Young adults’ needs change rapidly. I need a system that responds to my life stage, not one that locks me into unsuitable plans.
7.4 “Other Service Systems”
There is no “other system” that can meet my needs. Pushing participants into systems that don’t exist is dangerous.
- What SIL and SDA Will Mean for My Life SDA will allow me to:
access my kitchen, bathroom, and laundry cook my own meals clean my own space build independent living skills manage my own routines participate in my community work more build friendships live like any other adult
SIL will allow me to:
live safely have support when I need it reduce reliance on my mother grow into adulthood build confidence live a bigger life
Without SIL and SDA, I remain dependent. With them, I can thrive.
- Conclusion The NDIS was created so people with disability could live ordinary lives. I am a young woman with dreams, goals, and the right to independence. But independence is impossible without the supports that recognise the reality of my disability.
Submission 66
The proposed reforms, especially the removal of the right to appeal outcomes and the cuts to Community Participation will not secure the NDIS for future generations. They will restrict it. They will narrow it and they will harm people like me.
Reforms must strengthen the NDIS, not weaken it. They must protect the futures of young adults like me. They must reduce the burden on families, not increase it. And they must preserve the right to appeal the substance of decisions because without that right, people like me would have no pathway to justice.
Thank you for considering my submission. I would welcome the opportunity to provide further information.