Submission 2578
Submission to the Senate Inquiry into the National Disability Insurance Scheme
Amendment Bill 2026
Submitted by: Emily Raymond
Author Statement
I have prepared this submission with assistance from my key support worker. Due to my disabilities, I sometimes need support to organise my thoughts and put information into writing. The experiences, concerns, and views expressed in this submission are my own.
My Life, My Supports, and Why I Am Concerned
My name is Emily Raymond, and I am an NDIS participant.
When people talk about the NDIS, they often talk about budgets, sustainability, reforms and legislation.
I understand those conversations are important, but for me, this is not about budgets.
It is about my life.
I am concerned about the proposed changes to the NDIS because I know what my life looks like when I have the right supports around me, and I know what happens when I don’t.
The supports I receive through the NDIS are not luxuries. They are not extras. They are not things that make my life easier.
They are the things that make my life possible.
What My Disabilities Mean for Me
I live with permanent disabilities that affect many parts of my daily life.
I experience significant challenges with executive functioning, communication, emotional regulation, decision-making, daily living tasks, social interaction and community participation.
These difficulties do not disappear because I am trying hard or because I have good intentions.
And they do not disappear because I have become older.
My most recent Functional Capacity Assessment, completed by an Occupational Therapist at the request of the NDIA, found severe impairment across multiple areas of functioning.
The report confirmed what I already live with every day.
My disabilities are permanent, and my support needs have not gone away.
Submission 2578
The Life I Have Built
The NDIS has allowed me to build a life that I am proud of.
I live independently.
I live in a private rental.
I have routines.
I have responsibilities.
I have people in my life.
I contribute to my community.
I participate in work and meaningful activities.
I attend markets and community events.
People know me.
People know my card-making.
People stop and talk to me.
I am not hidden away at home.
I am part of my community.
One of the things I am most proud of is that I am known in my community for who I am, not just for my disability.
Through my card-making and attending local markets, I have built relationships, confidence, and a sense of purpose. People know my name. They stop and chat. They ask how I am. They ask about my cards and what I’ve been making.
Those things might seem small, but they matter.
For a long time, other people made decisions about my life. Now I have a place in my community. I have people who know me. I have somewhere to be and something to contribute.
These are the kinds of things that make life meaningful. They are also the kinds of things that become much harder to maintain when supports are reduced.
That might sound ordinary to some people, but for me it has taken years of support, hard work and persistence to get here.
None of this happened because my disabilities disappeared.
Submission 2578
It happened because I finally had the right supports around me.
Independence Did Not Happen Overnight
One of the things that worries me most about these proposed changes is that they seem to assume independence simply exists once it has been achieved.
My independence did not happen overnight.
Before the NDIS, I relied on state-funded community support workers and the support of people around me to navigate daily life and participate in my community.
Moving out of home was not something that happened naturally or easily. It was the result of years of planning, advocacy, problem-solving, and support from a dedicated Circle of Support who believed I had the right to live an ordinary life in the community.
Many of the supports that helped create that independence no longer exist. Some have been defunded. Some relied on people giving significant amounts of their time because they believed I deserved the same opportunities as everyone else.
Together, they helped me move from dependence on my family into an independent living arrangement with a non-disabled flatmate.
That transition changed my life.
For the first time, I had a home that was truly my own. I was able to develop confidence, build routines, learn new skills, make decisions about my own life, and become part of my community in ways that would not have been possible otherwise.
When people look at my life now, they see the outcome.
What they do not always see is the years of work, support, planning, advocacy, and investment that made that outcome possible.
I am concerned that the proposed changes focus heavily on reducing costs without recognising the significant personal, social, and financial investment that has already gone into helping people like me achieve independence.
If the supports that maintain my independence are reduced, it is not simply a matter of losing funding.
It risks undoing years of work that helped me move from dependence to independence in the first place.
That changes the framing significantly.
The point isn’t just that the Circle of Support helped Emily become independent.
The point is:
Submission 2578
The Circle of Support succeeded.
It achieved exactly what governments say they want.
Then the funding disappeared.
Now the NDIS refuses to recognise the value of the very thing that helped create the outcome they claim to be funding.
That’s a much stronger argument.
I’d replace the Circle section with something like:
My Circle of Support Changed My Life
One of the most important reasons I am able to live independently today is because of my Circle of Support.
Before the NDIS, I relied on state-funded community support workers and the support of people around me to navigate life. Like many people with disability, I wanted the same things other people want: my own home, meaningful relationships, choice and control over my life, and the opportunity to be part of my community.
Those things did not happen automatically.
My Circle of Support spent years helping me build the life I have today. They helped me identify my goals, solve problems, make decisions, build confidence, strengthen relationships, and work through barriers that often felt impossible.
They believed I had the right to an ordinary life in the community.
Their support helped me move from dependence on my family into an independent living arrangement with a non-disabled flatmate.
That was life changing.
For the first time, I had a home that was truly my own. I had greater choice and control over my daily life. I was able to build routines, develop confidence, strengthen relationships, and become part of my community in ways that would not have been possible otherwise.
The frustrating part is that the supports that helped create that outcome have largely disappeared.
My Circle of Support was defunded.
The model that helped me achieve independence is no longer recognised or valued in the way it once was.
I find that difficult to understand.
Submission 2578
Governments often talk about independence, community inclusion, choice and control. My Circle of Support helped me achieve all of those things.
It worked.
Yet the very approach that helped me build an independent life has been progressively defunded, while the NDIS increasingly focuses on individual supports without recognising the value of the relationships, planning, advocacy and community connections that helped create those outcomes in the first place.
When people look at my life now, they see someone living independently in the community.
What they do not see is the years of work, support, planning, advocacy and investment that made that possible.
My independence did not happen by accident.
It was built.
I worry that the proposed changes place too much focus on reducing costs and reassessing supports without recognising how much work goes into creating and maintaining an independent life.
The supports that helped me get here have already been reduced.
I do not want to see the supports that help me stay here disappear as well.
What My Supports Actually Do
My supports help me do the things many people take for granted.
They help me:
keep my home safe and organised manage appointments manage medications maintain routines get to places I need to go participate in work and community activities regulate stress and anxiety make decisions when I become overwhelmed stay connected to other people
My support workers are not doing life for me.
They are helping me do life.
Without those supports, things begin to unravel.
Submission 2578
The Occupational Therapist who completed my Functional Capacity Assessment identified risks including loss of employment, deterioration in mental health, medication neglect, social withdrawal, reduced safety, and increased vulnerability if supports are reduced.
Those risks are not hypothetical.
They are real.
My Biggest Fear
My biggest fear is that someone will look at my life now and decide I no longer need the supports that helped me build it.
I worry that stability is being mistaken for recovery.
I worry that because I have a home, because I participate in my community, because I work hard to maintain my life, someone might decide I am doing “too well” to need the supports I currently receive.
The truth is the opposite.
I am doing well because the supports are working.
My disability has not disappeared.
The supports are doing exactly what they were designed to do.
I am worried that the proposed changes will make it easier for people like me to lose supports despite no reduction in disability-related impairment.
I am also concerned that people with permanent disabilities may be subjected to more reassessments, greater scrutiny, and increasing pressure to continually prove support needs that have not changed.
Reassessments and Constantly Having to Prove Myself
One of the hardest parts of being disabled is constantly having to prove that you are disabled enough.
I have already gone through assessments.
I have already provided evidence.
My most recent Functional Capacity Assessment was requested by the NDIA.
That assessment found severe impairment and recommended continuation of my current supports.
I am concerned about reforms that may result in participants being repeatedly reassessed and repeatedly required to defend supports that are already working.
Submission 2578
Living with disability is exhausting enough without having to constantly prove your worthiness for support.
The Impact on Families
I often hear people talk about families stepping in if supports are reduced.
The reality is that families cannot replace the NDIS.
My family loves me.
They support me.
But they are not an unlimited resource.
Like many families, they are ageing.
They have their own lives, responsibilities, health concerns and financial pressures.
If my supports are reduced, the need for support does not disappear.
The burden is simply transferred onto family members.
That is not sustainability.
That is cost-shifting.
What Happens If Supports Are Reduced?
When people talk about reducing supports, I don’t think about budget lines.
I think about consequences.
I think about:
losing independence losing opportunities becoming isolated struggling to maintain my home losing community connections deterioration in my mental health losing the stability I have spent years building
I think about how much harder life becomes when the supports that keep everything together are removed.
The cost of preventing crisis is almost always lower than the cost of responding to crisis after it happens.
Why This Matters
Submission 2578
The NDIS has given me opportunities that many people take for granted.
It has allowed me to live in my community rather than being isolated from it.
It has allowed me to build confidence, relationships, routines and purpose.
It has allowed me to contribute.
When I read these proposed changes, I do not see legislation.
I see the possibility that people like me could lose the supports that make community inclusion possible.
I see the possibility that stability will be mistaken for reduced need.
I see the possibility that people will have to fight even harder to keep the supports that are already working.
Article 19 and the Right to Live in the Community
Australia has committed to the United Nations Convention on the Rights of Persons with Disabilities.
Article 19 recognises the right of people with disability to live independently and be included in the community.
For me, Article 19 is not an abstract principle.
It is my life.
It is my home.
It is my relationships.
It is my ability to participate in my community.
It is my ability to make choices about my own future.
The supports I receive are what makes those things possible.
Recommendations
I respectfully ask the Committee to:
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Protect participants with permanent disabilities from unnecessary reassessments and support reductions where there has been no change in functional capacity.
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Ensure NDIA-requested clinical evidence is given appropriate weight in planning and reassessment decisions.
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Protect supports that maintain independence, housing stability, employment, community participation and mental wellbeing.
Submission 2578
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Recognise maintenance and prevention of regression as legitimate outcomes for people with lifelong disabilities.
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Strengthen safeguards against shifting disability support responsibilities onto ageing family members.
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Ensure any reforms remain consistent with Australia’s obligations under Article 19 of the UN Convention on the Rights of Persons with Disabilities.
Conclusion
I am not asking for special treatment.
I am not asking for more than I need.
I am asking for the supports that allow me to continue living the life I have worked so hard to build.
My independence was not given to me.
It was built through years of support, advocacy, planning, and hard work.
People keep talking about sustainability.
My life is sustainable right now.
My supports are working.
I am living in my community.
I am participating.
I am contributing.
I am not in crisis.
Please do not create a crisis and then call it sustainability.
Please do not dismantle what took so long to build.
Thank you for considering my submission.