Submission 1380

Introduction.

Hi Parliament, my name is . I am a 30 year old woman currently residing in Naarm

(Melbourne). I am late diagnosed AuDHD (ASD level 2 and ADHD inattentive type), diagnosed with ASD at 29 and ADHD at 30. I also live with hypermobile Ehlers Danlos (hEDS, a genetic connective tissue disorder) and Postural Orthostatic Tachycardia Syndrome (POTS, dysregulation of the autonomic nervous system). I am currently studying Social Science Psychology and work as a psychosocial disability support worker.

Although my own access to the NDIS is relatively recent, I grew up in a prominent disability family and have spent my entire life closely connected to disability in various forms, including invisible and unrecognised disability. Through both lived and professional experience, I have seen firsthand how disability support can profoundly alter a persons trajectory, participation, wellbeing and opportunities.

I am writing to express serious concerns regarding the proposed overhaul of the NDIS and the potential long term consequences these reforms may have for disabled Australians, families, carers, and future generations.

Growing Up Undiagnosed.

I grew up on the lands of the Wiilman Noongar peoples in regional Western Australia during the 1990s and early 2000s. At the time, public understanding of disability,

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particularly autism, was extremely limited and heavily shaped by narrow and often ableist assumptions.

I grew up closely alongside my cousin, who would be described within current policy language as having “profound autism”, diagnostically, this translates to ASD level 3 with comorbid intellectual disability and psychiatric conditions. My family worked hard to support him and his family. This eventually led to my Mum providing respite care for other families in our town. I was fortunate to grow up surrounded by a wide range of disability experiences, and I genuinely believed I had a strong understanding of what disability looked like. What none of us recognised was that my own disability was present too.

As a child, I was described as intelligent, witty, “quirky”, and “bossy”. As school became more demanding, those comments shifted into statements such as “more than capable but doesn’t apply herself”. I understood the content being taught and could discuss it extensively, but I struggled significantly with translating knowledge to written work, staying regulated in busy classrooms, and functioning within rigid educational structures.

The older I became, the more I internalised the message that I was lazy, difficult, dramatic, or wasting my potential. What adults perceived as behavioural issues were often autistic meltdowns, sensory overwhelm, and executive functioning difficulties that nobody around me understood at the time.

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My mental health deteriorated significantly throughout adolescence. I became

withdrawn, depressed, engaged in selfharm, and increasingly isolated myself socially

and academically. I developed a deep interest in understanding human behaviour, partly

because I was trying to understand why life felt so difficult for me compared to others

around me.

Misdiagnosis and the consequences of delayed recognition.

At 18, I moved to Naarm and was accepted into Applied Science Psychology. However,

managing independent living, navigating university systems, maintaining employment,

coping with ongoing mental health struggles became overwhelming. Over the

following years I experienced failed classes, multiple university withdrawals, housing

instability, and homelessness. I was repeatedly moved through mental health systems

and eventually was diagnosed with borderline personality disorder.

While some aspects of that diagnosis resonated at the time, it ultimately failed to explain

the broader lifelong patterns underlying my difficulties. I spent nearly a decade living

under that label. During this period I experienced significant stigma within healthcare

settings, was refused treatment by some providers, trialled multiple psychiatric

medications with limited benefit, and internalised harmful beliefs about myself and my

worth in relationships and society.

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It wasn’t until my sister’s son began showing signs of autism that my family’s understanding of neurodivergence expanded. We realised our previous understanding of autism had been heavily shaped by presentations involving intellectual disability and higher support needs, we failed to recognise how autism can present differently in women and girls.

As I researched autism in women, masking, and the overlap between autism and borderline personality, I began recognising myself in ways I never had before. My therapist supported further assessment, and I was eventually diagnosed with ASD level 2, shortly followed by ADHD. For the first time in my life, my experiences made sense.

The Importance of early intervention and appropriate support.

My nephew’s experience has highlighted what becomes possible when children receive early recognition and support. Through access to NDIS early intervention supports, I have watched him grow from being nonverbal to being able to communicate his emotional and sensory needs, recognize overwhelm in both himself and others, and engage meaningfully with the world around him. The difference between his trajectory and my own has been profound.

My own experience demonstrates the long term consequences of delayed recognition and inaccessible support systems. Had my neurodivergence been identified earlier, it is highly likely my life trajectory would have been different. Earlier support may have

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reduced years of mental health crises, educational disruption, welfare reliance, housing instability, and repeated contact with emergency and mental health services.

Since receiving appropriate diagnosis and support, my ability to participate in education has changed dramatically. Returning to university with appropriate learning adjustments transformed my academic outcomes. My GPA increased from 1.8 to 3.0, I now consistently achieve distinctions and high distinctions.

This improvement did not occur because I suddenly became more intelligent or motivated. It occurred because my learning needs were finally recognised and accommodated appropriately. Recorded lectures, closed captions, flexible pacing, sensory regulation, and accessible learning environments enabled me to demonstrate capacities that had always existed. This demonstrates that many barriers faced by people with disabilities are not deficits in intelligence or potential, but failures in accessibility and support.

Living with invisible disabilities.

Living with neurodivergence and connective tissue disorders in systems designed primarily around able-bodied and neurotypical functioning remains incredibly difficult.

My hEDS and POTS are largely invisible disabilities, despite their significant functional impacts. I dislocate joints performing ordinary daily tasks. I have sustained injuries removing clothing or carrying groceries. Activities that once brought me joy, such as playing instruments or engaging in exercise, are now limited by pain, instability, fatigue

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and injury risk. Much of my life revolves around preserving enough physical and cognitive capacity to continue working and surviving day to day.

Despite working as much as I am physically capable of sustaining, I regularly face impossible decisions regarding medications, treatment access, and healthcare costs. Some medications are not covered under the PBS, forcing me to ration or skip doses due to financial limitations. This is not an isolated experience. Many people with disabilities in Australia are surviving within systems that require extraordinary effort simply to maintain basic participation in society.

Professional experience supporting NDIS participants.

I have worked as a psychosocial disability support worker for nearly 3 years, and have supported several participants long term. Through this work I have witnessed the profound difference that stable and appropriate support can make in people’s lives.

I have also witnessed the increasing distress caused by funding reductions, repeated reassessments, and escalating evidentiary demands. The process of continually proving one’s disability and functional impairments is deeply exhausting and dehumanising. For many participants, particularly those with psychosocial disabilities, ASD, ADHD, or fluctuating conditions, the administrative complexity of the NDIS itself becomes disabling. Repeated paperwork, reassessments, inconsistent communication, and uncertainty create a substantial executive functioning burden. Many participants are only able to navigate the system because of unpaid labour provided by carers, support

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current system

coordinators, allied health professionals, and support workers. The current system

frequently reinforces deficit based narratives that reduce people to their most distressed

or impaired moments in order to justify access to support.

Concerns regarding the proposed NDIS “reforms”.

I am deeply concerned that the proposed reforms risk prioritising short term cost

containment over long term wellbeing, participation and prevention.

The NDIS is not simply a funding scheme. For many people it is the difference between:

 - Participation and isolation,

 - Employment and welfare dependence,

 - Stability and crisis,

 - Autonomy and institutionalization.

Reducing access to supports does not eliminate costs; it shifts them into other already

underfunded systems including emergency healthcare, mental health services, housing,

carer supports and welfare systems. My own life reflects this clearly. Earlier access to

support may have reduced years of welfare dependence, homelessness, emergency

mental health intervention, and education disruption.

I am also concerned by the increasing ambiguity surrounding terms such as

“reasonable and necessary”, “functional impairment/impact”, and “permanence”. These

definitions carry enormous consequences for people with disabilities and their lives, yet

often appear inconsistently interpreted. Disability is complex and highly individual. Two

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people with the same diagnosis may require entirely different forms of support. This

complexity can’t be adequately addressed through rigid or overly generalised policy

frameworks.

For example, I have been informed in relation to hEDS that surgical interventions should

be “exhausted” before certain supports are considered. However, hEDS is a systemic

connective tissue disorder affecting the entire body. The expectation that repeated

surgeries across multiple joints should occur before support is deemed appropriate

raises serious concerns regarding quality of life, functionality, and long term outcomes.

Many people with disabilities are only able to maintain employment, education, and

participation because supports are currently in place. Removing these supports may

significantly increase functional impairment and long term reliance on welfare and crisis

systems.

The need for genuine co-design and disability-informed decision making.

I strongly believe that disability policy must be shaped collaboratively with people with

disabilities, allied health professionals, and those with live experience including carers.

There are serious concerns regarding decision-making processes undertaken by

individuals without adequate disability-informed, trauma-informed, or clinical –understanding of complex and intersecting disabilities.

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Planners and decision-makers should receive significantly greater education regarding

invisible disability, neurodivergence, psychosocial disability, executive functioning,

fluctuating conditions, and trauma-informed practice. Meaningful reform can’t occur

without genuine consultation and co-design with the communities most directly affected.

Recommendations.

• Protect access to early intervention supports for neurodevelopmental disabilities, including ASD and ADHD.

• Reduce unnecessary reassessment requirements for life long disabilities.

• Clarify legislative definitions including “reasonable and necessary”, “functional impairment/impact”, and “permanence” to reduce subjective interpretation.

• Increase involvement of allied health professionals and people with lived experience in planning and assessment processes.

• Ensure all planners and decision makers receive mandatory disability-informed and trauma-informed training.

• Recognise and address executive functioning burden created by complex administrative systems.

• Prioritise long term prevention, participation, and stability over perceived short term cost reduction.

• Ensure all reforms are genuinely co-designed with people with disabilities and their carers, support workers, and disability advocacy organisations.

Conclusion.

People with disabilities are not economic burdens to be minimised. We are members of

the community whose capacity to participate is profoundly shaped by access to support, stability, dignity, and opportunity.

The NDIS has changed the trajectory of countless lives, including within my own family.

I urge the committee to consider not only the immediate financial implications of these

“reforms”, but also the long term human, social, and economic consequences of

reducing access to support for those who need it most.

A society should ultimately be judged by how it treats its most vulnerable members. I

ask that these amended reforms prioritise humanity, accessibility, evidence-informed

policy, and genuine collaboration with the disability community. Just as policy makers

do, we want the NDIS to be secure for our future generations. Those of us who navigate

these systems day in and day out have the strongest understanding of where cost

cutting is appropriate and safe. Work with us, not against us.