To the Committee, Submission 2930
I am writing to express my deep concern regarding the proposed changes to the National Disability Insurance Scheme and the devastating impact these changes would have on my family and many others like ours.
My husband is a serving member of the Australian Defence Force, and together we are raising three neurodivergent children with significant disabilities and support needs.
I am deeply concerned that the proposed changes within this bill risk narrowing access to NDIS supports for children and families whose disabilities are complex, fluctuating, behavioural, neurological and not always outwardly visible.
In particular, I am concerned about changes that may make it more difficult for children with autism, ADHD, PDA profiles, anxiety disorders and complex behavioural regulation needs to access ongoing therapeutic and capacity-building supports.
Families like ours already face significant barriers navigating fragmented education, mental health and disability systems. Reducing eligibility, tightening funding access or shifting responsibility back onto mainstream systems that are already overwhelmed will leave vulnerable children without the supports required to remain safe, regulated, educated and engaged in the community.
I am also concerned that the proposed changes do not adequately recognise the cumulative impact of multiple neurodevelopmental disabilities, masking behaviours in gifted children, severe nervous system dysregulation or the hidden level of crisis occurring within many family homes. Children can appear academically capable or superficially “high functioning” while still experiencing profound disability-related impairment and psychological distress.
For families like ours, the NDIS is not supplementary support. It is the only system currently enabling access to therapies, behavioural supports, regulation strategies, and the interventions necessary to prevent further deterioration, family breakdown, mental health crises and long-term dependence on higher-cost government systems.
Our eldest child has been diagnosed with Autism Spectrum Disorder Level 2, ADHD, and clinically significant anxiety.
Our middle child has Autism Spectrum Disorder Level 2, ADHD, a PDA (Pathological Demand Avoidance) profile, clinically significant anxiety and Spina Bifida Occulta. His disability impacts are severe and pervasive. He requires intensive behavioural support and medication management, including chemical restraint prescribed under medical supervision due to the intensity of emotional dysregulation, aggression and nervous system overwhelm associated with his disability.
Our youngest child has been diagnosed with ADHD, OCD and clinically significant anxiety, with suspected Autism Spectrum Disorder and PDA profile currently awaiting formal diagnosis.
All three children require medication managementSubmissionfor2930ADHD and anxiety. Despite extensive therapeutic intervention and parental support, aggression, dysregulation, emotional volatility, sensory overwhelm, executive functioning impairment and nervous system burnout are daily realities within our home.
The impact of disability within our household extends far beyond what is visible externally. Our children are highly intelligent and have been assessed within the gifted range academically. However, this has often worked against them as they mask heavily throughout the school day. The emotional and neurological toll of sustained masking results in severe burnout, emotional collapse, aggression, anxiety and dysregulation within the home environment, where they finally feel safe enough to release that distress. As a result, our home environment operates in a near-constant state of crisis management.
Escalations associated particularly with our PDA-profile child have resulted in property damage and physical altercations involving siblings and parents, including injuries within the household. Our other children are being exposed to ongoing aggression, dysregulation, conflict and instability, which is contributing to secondary trauma, heightened anxiety and emotional distress.
We live in fear and walk on eggshells daily, attempting to prevent escalation and maintain safety within the family home.
At times, we have been required to physically restrain our child as a last resort to protect siblings and prevent immediate harm. These are situations no family should be left to manage alone without appropriate support.
The severity of our child’s disability-related distress has also required involvement from our local hospital Child and Adolescent Mental Health Services (CAMHS) team. Despite ongoing efforts to support him through therapy, medication, educational accommodations and intensive parental intervention, our son has repeatedly expressed thoughts of self-harm and statements suggesting that others would be “better off” if he were not here.
He is only nine years old.
This is not the presentation of a child who is coping adequately within existing systems or whose needs are being sufficiently met through mainstream supports alone. It is deeply distressing as parents to witness a child of this age experiencing such profound emotional suffering and hopelessness.
The suggestion that children like ours require fewer supports, or that funding reductions can occur without serious consequence, fails to reflect the reality families are living every day.
We have no extended family or practical support network nearby due to Defence postings and relocations associated with my husband’s service. All caregiving responsibilities, emotional regulation support, crisis intervention, supervision, school advocacy and therapy coordination fall solely on us as parents.
Carer burnout is severe and ongoing. The cumulative psychological impact of parenting within sustained crisis conditions has become so significant that we have had to privately fund parental psychological therapy for myself, at a cost of $345 per fortnight, simply to maintain capacity to continue functioning as carers.
Additionally, I myself am diagnosed with ADHD and Autism Spectrum Disorder. As a neurodivergent parent who did not receive adequate support or intervention during childhood, I am now attempting to manage my own functional limitations while simultaneously parenting and advocating for three neurodivergent children with complex disabilities.
Financially, we have exhausted our savings on private assessments, diagnoses, therapies, medications, specialist appointments, educational supports and disability-related costs. We are renters with no meaningful financial buffer remaining. While our household income may appear acceptable “on paper,” this fails to account for the enormous disability-related expenses we carry, combined with the significantly higher cost of living in Canberra, where we are required to live due to Defence service obligations.
We are currently paying in excess of $25,000 per year for mid-range private schooling because our local public schools have been unable to safely or adequately accommodate our children’s disability needs. Public schools in our area are overwhelmed, understaffed and lack the resources required to provide the level of regulation and support our children require to access education safely.
Private schooling was never a lifestyle choice or preference for our family. It was a decision made out of desperation after mainstream public education settings repeatedly failed to meet our children’s disability-related needs safely and adequately.
Like many families of neurodivergent children, we were effectively pushed into private education because there were no realistic alternatives available that could appropriately support our children’s behavioural, emotional, sensory and learning needs within the public system. Even with private schooling, our children continue to experience burnout, school refusal, nervous system exhaustion, emotional decline and inadequate accommodation. The financial impact of this has been enormous.
In order to sustain the significantly higher costs associated with raising three neurodivergent children, I am required to maintain full-time employment despite the intensive caregiving responsibilities within our home.
My workday regularly begins at approximately 6:30 am, where I attempt to complete administrative work before the children wake and the daily caregiving demands begin. Due to the number of therapy appointments, school-related issues, behavioural crises, supervision requirements and my children’s inability to independently access public transport safely, my workday is frequently fragmented across the entire day and evening. It is not uncommon for me to continue working late into the night, often until 11:30 pm or midnight, in order to complete my required workload and employment hours after managing the day-to-day care needs of our children.
While we technically maintain dual incomes, the reality is that my wage is modest relative to the current cost-of-living climate and the extraordinary disability-related expenses our family faces.
The expectation that families should simply “absorb” additional care responsibilities and financial burden without adequate NDIS support fails to recognise the unsustainable reality many carers are already living.
This level of demand is fuelling severe carer burnout while simultaneously compounding my own neurodivergent limitations as a parent with ADHD and Autism Spectrum Disorder. There is no meaningful recovery time, no sustainable balance between employment and caregiving; and no realistic capacity for our family to privately absorb further reductions in support without significant consequences to our mental health, financial stability, employment sustainability and overall family functioning.
Without continued NDIS support, we simply cannot afford the therapies, regulation supports, capacity-building interventions, behavioural supports and disability-related services our children require. Removing or restricting these supports will not reduce disability. It will only push already overwhelmed families further into crisis.
Our hope through sustained therapies, behavioural supports, regulation strategies, and appropriate interventions is not dependence, it is independence.
We want our children to develop the emotional regulation, adaptive functioning, social, executive functioning and daily living skills required to eventually participate in meaningful long-term employment, maintain relationships, contribute to their communities, and live fulfilling and independent adult lives.
The purpose of early intervention and ongoing support is to reduce long-term disability impacts and improve future outcomes. Removing or restricting access to these supports risks achieving the exact opposite.
I have personally witnessed the long-term consequences of inadequate childhood support through my own brother’s experience.
My brother received a late diagnosis of Autism Spectrum Disorder Level 2, ADHD, PDA profile and Oppositional Defiant Disorder (ODD) only in adulthood, after years of significant mental health deterioration and functional decline. Without appropriate identification, therapies, regulation supports, or intervention during childhood, he now lives with chronic depression, severe anxiety, repeated suicidal ideation and profound burnout.
He has experienced multiple psychiatric hospitalisations following overdose attempts associated with his mental health struggles. Due to his functional capacity limitations, he has been unable to maintain long-term meaningful employment, achieve financial independence or sustain stable relationships.
He continues to live at home with my elderly parents, who themselves are managing multiple significant health conditions and medical treatments while attempting to support him emotionally and financially during retirement. My parents are retired with no ongoing employment income and are relying heavily on limited savings in order to continue supporting him.
My brother sees himself as worthless and struggles daily with hopelessness and isolation.
I share this because I do not want this future for my children. I do not want them growing into adults who believe they are failures because they were denied the early interventions, therapies, accommodations and supports that could have helped them build capacity, resilience, independence and self-worth from childhood.
The long-term economic and social cost of unsupported neurodivergent children does not disappear. It simply shifts into greater reliance on mental health systems, hospitals, carers, welfare systems, aged parents and crisis services later in life.
The NDIS has the capacity to change the trajectory of children’s lives. Removing or restricting supports risks condemning many families to preventable long-term crisis and intergenerational burnout.
Without adequate support: – our children’s mental health will continue to deteriorate; – Educational participation and long-term outcomes will decline; – family breakdown risks will increase; – carer burnout and psychological deterioration will worsen; – future reliance on mental health systems, welfare systems, hospital systems, and crisis services will likely increase; – opportunities for future independence, employment, and community participation may be permanently reduced.
Removing or restricting access to therapies, behavioural supports, regulation supports, and disability funding in circumstances like ours could be catastrophic. Not only for our child’s long-term mental health and development, but for the safety, stability and wellbeing of our entire family.
Australia has already seen tragic examples of what can occur when families caring for disabled children reach absolute breaking point, including the devastating Clune family murder-suicide. While every circumstance is different, these tragedies highlight the dangerous consequences of chronic carer exhaustion, isolation, inadequate support, and systems that fail families before crisis occurs.
The NDIS is not a luxury for families like ours. It is the difference between stability and breakdown and between future dependence and future independence.
I urge the Committee to carefully consider the real-world impacts these proposed changes will have on vulnerable children, carers and families already operating at crisis point.
Reducing access to support will not reduce disability. It will only deepen trauma, worsen mental health outcomes, increase long-term reliance on higher-cost systems and push more families beyond what they can safely endure.