Submission regarding proposed NDIS reforms and future eligibility changes
Executive Summary
I am a late-diagnosed Autistic and ADHD parent with PTSD and Complex PTSD, raising neurodivergent children who access disability supports.
My submission is based on over 11 years of seeking support for myself and my family through health, education, community, disability, housing and family support systems.
My key concerns are:
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Disabled people often require support to access support.
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Delayed support frequently results in crisis, burnout, declining health, loss of functioning and increased long-term costs.
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Community services are often unable to replace specialised disability supports.
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Repeated assessments and evidence requests consume the very capacity disability supports are intended to protect.
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Functional Capacity Assessments require significant review and should not be relied upon without reform.
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Disability frequently overlaps with trauma, chronic illness, mental health challenges and social disadvantage, yet systems often assess these issues separately.
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Participant choice and control are essential because effective support differs significantly between individuals.
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Early support prevents crisis and reduces future demand on health, housing, education, child protection and welfare systems.
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Many of the concerns currently being discussed as future risks are experiences my family has already lived through.
My experience demonstrates that unsupported disability often results in worsening outcomes for individuals, families and government systems alike.
Submitted by: Natalie F
I am a late-diagnosed Autistic and ADHD parent with diagnosed PTSD and Complex PTSD. I am also the primary carer of neurodivergent children who are connected to disability supports through the NDIS and Early Childhood Early Intervention.
I am writing this submission from lived experience.
My concerns are not based on theory or political debate. They are based on more than a decade spent trying to access support, maintain support, navigate disability systems, raise neurodivergent children, survive domestic violence, manage housing instability, and keep my family functioning while living with disability myself.
I sought help early
Before approaching the NDIS, I was working full-time in childcare while raising my children.
I was living independently in rental housing, driving, working, parenting, attending appointments, and actively seeking support for my children.
I attended playgroups when my children were young.
My eldest son attended speech therapy when he was younger.
I attended sleep schools because sleep difficulties have been a long-standing challenge for our family.
I sought help for feeding difficulties, sleep difficulties, developmental concerns, behavioural concerns, and parenting challenges.
I worked with schools, childcare services, health professionals, and community services.
I followed the advice I was given.
I did the things families are told to do.
What is important to understand is that despite years of engagement with services, nobody identified autism or ADHD.
I did.
I was the one who eventually recognised the patterns.
I was the one who continued researching and advocating.
I was the one who kept seeking answers when things were not making sense.
When I sought assistance, it was not because I was unwilling to support my children. It was because I recognised that the level of support my family required was becoming unsustainable without additional help.
At the time I was a full-time working single parent. My eldest son was attending school and experiencing significant difficulties. My younger child was attending childcare. I was actively trying to access support while continuing to meet my responsibilities as a parent.
Despite seeking help early, appropriate support was not available in the way it was needed.
Community services were unable to provide the level of disability-specific assistance required.
When I approached the NDIS, I was turned away.
The consequences of delayed and inadequate support did not occur immediately, but over time they compounded.
Over the years I experienced increasing burnout, declining health, housing instability, financial hardship, loss of functioning, increasing isolation, and increasing difficulty maintaining the level of participation I had previously achieved.
One of the most difficult realities I have faced is that I spent years doing exactly what families are told to do.
I sought help early.
I engaged with services.
I followed recommendations.
I advocated for my children.
And despite all of that, both my children and I still required support because disability does not disappear simply because people work hard.
The reality of cumulative disadvantage
One of the difficulties in writing this submission is that no single document can fully capture the cumulative impact of years spent navigating disability, trauma, parenting, housing
instability, domestic violence, health concerns, community services, education systems, child protection systems, and disability support systems.
Many of these experiences do not occur in isolation.
They overlap, interact, and compound over time.
When systems assess individual events separately, they can miss the reality that disability often exists alongside other forms of disadvantage and stress.
My story is not one of a single crisis or a single barrier. It is the cumulative impact of many years spent trying to keep my family functioning while repeatedly navigating systems that were often difficult to access, difficult to understand, and difficult to sustain.
The system consumed the capacity it was supposed to protect
The greatest impact of my NDIS journey has not been receiving support.
It has been fighting for support.
Over the years I have spent countless hours gathering evidence, attending appointments, completing paperwork, responding to requests for additional information, participating in assessments, following up providers, lodging complaints, navigating reviews, and trying to understand changing rules and expectations.
This process consumed capacity that should have been available for parenting, maintaining my health, supporting my children, maintaining my home, participating in my community, and building a stable future.
I often felt that I was spending more energy navigating support systems than actually receiving support.
The system consumed the very capacity it was supposed to protect.
Disabled people often require support to access support
Many discussions about eligibility assume that people can simply obtain diagnoses, gather evidence, attend appointments, complete paperwork, and advocate for themselves.
My experience has been very different.
I continue to struggle accessing investigation and assessment for significant physical health concerns, including suspected hEDS, POTS, MCAS and related conditions. Not because these issues do not affect me, but because navigating medical systems requires capacity that I often do not have.
Many disabled people need support in order to access support.
The people most in need are often the people least able to successfully navigate complex systems.
Tightening eligibility requirements risks excluding people who are already struggling to access diagnoses, evidence, assessments, and healthcare.
Many undiagnosed people are living in poverty, crisis, burnout, isolation, homelessness, domestic violence situations, or chronic health struggles. Expecting those same people to independently navigate increasingly complex pathways ignores the realities of disability.
Disability does not exist in isolation
One of the greatest weaknesses I see within disability systems is the failure to understand overlapping diagnoses and cumulative impacts.
Autism does not exist in isolation.
ADHD does not exist in isolation.
Trauma does not exist in isolation.
Chronic illness does not exist in isolation.
Mental health challenges do not exist in isolation.
Many people live with multiple diagnoses, multiple barriers, and multiple forms of disadvantage at the same time.
The interaction between those factors can significantly alter functioning, support needs, and capacity.
Any system that assesses people based on narrow categories without understanding how disabilities interact risks making inaccurate decisions about real people’s lives.
There needs to be genuine disability expertise involved in decision-making, including understanding masking, fluctuating capacity, trauma, burnout, sensory needs, executive functioning difficulties, communication differences, and the cumulative impacts of multiple conditions.
Functional assessments and repeated evidence requests
I am concerned about increasing reliance on functional assessments.
I have already completed multiple Functional Capacity Assessments for both myself and my children.
These assessments consume funding, consume time, consume emotional energy, and often require families to repeatedly prove the same needs.
Despite extensive reports and assessments, families are frequently asked for additional evidence.
In my experience, Functional Capacity Assessments themselves require significant review.
They are often expensive, repetitive, and disconnected from practical outcomes.
If they are going to play a larger role in future eligibility decisions, they need to better reflect real-world functioning, fluctuating capacity, masking, trauma, burnout, and the realities of daily life.
Waiting is not neutral
One of the most frustrating aspects of navigating disability systems is the expectation that people can simply wait.
Wait for assessments.
Wait for reviews.
Wait for decisions.
Wait for appeals.
Wait for services.
Wait for funding.
Wait for providers.
But disability does not pause while systems deliberate.
Family responsibilities do not pause.
Housing stress does not pause.
Financial hardship does not pause.
Domestic violence does not pause.
Pregnancy does not pause.
Children’s developmental needs do not pause.
Many disabled people and families are already at crisis point when they ask for help.
When support is delayed by months, the consequences continue to grow.
The result can be worsening mental health, increasing burnout, loss of functioning, loss of skills, financial hardship, housing instability, social isolation, family stress, and greater long term support needs.
By the time help arrives, people are often significantly worse than when they first requested support.
Being connected to services does not guarantee support
Throughout my parenting journey I have actively sought support.
I have engaged with community services, family support services, counselling, disability services, schools, childcare services, therapists, Child Safety-related services, Carers Queensland, Mission Australia, Stride, STARH and many other organisations.
At one point I experienced homelessness while pregnant despite being connected to multiple services and actively seeking assistance.
This experience reinforced an important lesson: being connected to services does not necessarily mean receiving the support required to prevent crisis.
Even while engaged with multiple systems, I was still expected to continue navigating assessments, applications, appointments, reviews, evidence gathering, and support processes.
The existence of services does not automatically mean those services have the capacity, funding, expertise, or flexibility required to meet people’s needs.
Being ping-ponged between services is not support
Many individual workers genuinely care.
However, my experience has often been one of being bounced between systems.
Community services direct people to the NDIS.
The NDIS directs people to community supports.
Families are moved from one service to another and expected to remain functional throughout the process.
Being repeatedly redirected is not support.
Being told that help exists somewhere else is not support.
Being expected to coordinate multiple fragmented systems while disabled and overwhelmed is not support.
The result is exhaustion.
There was no recovery period
One of the most significant aspects of my experience is that there has rarely been an opportunity to recover.
Over the years there has been a continual cycle of disability-related challenges, parenting responsibilities, housing instability, domestic violence, pregnancy, financial hardship, support applications, reviews, assessments, complaints processes, and system navigation.
People are often assessed as though they are functioning under normal circumstances.
However, many disabled people and families are navigating support systems while already experiencing significant stress, crisis, burnout, or survival mode.
The impact of these cumulative demands is rarely reflected in assessments, reviews, or funding decisions.
Early support prevents crisis
I attempted to access support early.
I attempted to access support for my children.
I attempted to access support for myself.
Instead, much of my energy was spent proving need and navigating systems.
The outcome was severe burnout, nervous system shutdown, declining health, loss of functioning, financial hardship, housing instability, increasing isolation, and a prolonged period of survival mode.
I eventually made significant changes to how my family lives, including homeschooling and reducing demands where possible.
These decisions were not made because I believed they were ideal solutions for every family.
They were made because severe burnout and declining capacity left me with very few alternatives.
Looking back, many of the things that helped me function before diagnosis were actually supports for my neurodivergence that I did not yet understand.
Once those supports disappeared or became unsustainable, my capacity declined dramatically.
The cost of failing to provide timely support is often far greater than the cost of providing support early.
Access to meaningful support matters
While some supports have been genuinely helpful, one of my greatest frustrations is that many of the supports I believed would be most beneficial were either unavailable, inaccessible, excluded, or increasingly difficult to obtain.
Throughout my time seeking support, I repeatedly looked for assistance relating to occupational therapy, sensory needs, communication difficulties, disability-specific therapies, practical functioning supports, and strategies that could improve quality of life for both myself and my children.
Many of these supports were unavailable, difficult to access, restricted, excluded, redirected elsewhere, or simply never provided.
Families are often told that these needs should be met through public health systems, mainstream services, schools, childcare services, or community organisations.
However, my experience is that many of these systems are already under significant pressure and often do not have the capacity, expertise, accessibility, availability, or disability-specific understanding required to meet these needs.
The result is not that support is successfully provided elsewhere.
The result is often that support does not occur at all.
This leaves many disabled people and families falling through gaps between systems while each system assumes another service is responsible.
While this submission focuses on concerns, I believe it is important to acknowledge that some supports have been genuinely helpful.
Practical supports such as support workers and cleaning assistance have had a meaningful impact on my family’s quality of life and functioning.
Many individual workers I have encountered have genuinely cared and worked hard to help.
However, support cannot be reduced to a one-size-fits-all model.
The right support can be life-changing.
The wrong support can be ineffective, harmful, or actively undermine a person’s wellbeing and capacity.
What works for one participant may not work for another.
This is why participant choice, control, flexibility, and individualised support are so important.
People with disabilities are experts in their own lives and should be supported to identify what works for them rather than being forced into rigid models of support.
Parents with disabilities supporting disabled children need support too
There is often discussion about parental responsibility.
As a parent, I fully accept responsibility for caring for my children.
However, disability creates additional demands that extend far beyond typical parenting expectations.
Supporting children with sensory needs, communication differences, emotional regulation challenges, executive functioning difficulties, transition struggles, sleep difficulties, feeding difficulties, and disability-related barriers requires significantly more time, energy, patience, planning, advocacy, and resources.
When parents themselves are disabled, those challenges become even greater.
Families are not asking someone else to raise their children.
They are asking for support that allows them to continue doing so.
Looking beyond where I am now
I often feel like people look at where I am now and assume I have always been here.
They do not see the years of working, parenting, attending appointments, advocating, researching, trying different services, trying different approaches, and doing everything I could think of to keep moving forward.
They do not see the years spent trying to make conventional systems work for myself and my children before eventually recognising that many of those systems were not meeting our needs.
I did not end up homeschooling, living a lower-demand life, and constantly navigating support systems because it was easier.
Homeschooling was both a personal preference and an adaptation. Like many of the decisions I have made as a parent, it came from years of observing what was and was not working for my family.
I also reached a point where severe burnout significantly reduced my capacity and removed many of the alternatives that may have once been available to me.
I ended up here because after years of trying to hold everything together, burnout eventually stopped giving me a choice.
The broader consequences of unsupported disability
When disability support fails, the consequences extend far beyond the NDIS.
It affects:
- Health systems
- Mental health systems
- Housing systems
- Education systems
- Child protection systems
- Employment participation
- Community participation
- Family wellbeing I am concerned that disability-related struggles are too often misunderstood as unwillingness, poor choices, poor parenting, or non-compliance rather than recognised as indicators that additional support is needed.
Without adequate support, families can find themselves in crisis despite doing everything they can to hold things together.
Final reflection
Many of the concerns currently being raised about future reforms are not hypothetical concerns for my family.
They are experiences we have already lived through.
Repeated assessments, administrative burden, delayed decisions, service gaps, inaccessible pathways, increasing barriers to support, and being bounced between systems are not future risks.
They are existing realities.
I understand that no system can meet every need perfectly.
However, the success of disability reform should not be measured only by participant numbers, budget figures, or reduced expenditure.
It should be measured by whether disabled people and their families are actually better supported, able to participate in their communities, build meaningful lives, maintain relationships, raise families, and live with dignity.
How are my children and I supposed to have a chance at participating in society authentically and in the way that works for us, and contributing to our communities, when so much of our energy already goes into simply getting through daily life?
Disabled people are not numbers on a spreadsheet.
We are people.
We deserve the opportunity to live, participate, and thrive with the support we need.
Submitted by: Natalie F
AI was used as an editing and drafting tool to assist in organising and presenting my lived experience. All experiences, views and opinions expressed are my own.