Submission 1482
To Whom It May Concern,
My name is , and I am writing on behalf of my husband and our family regarding the proposed changes to the National Disability Insurance Scheme (NDIS) and the impact these changes may have on autistic children and families like ours.
Our daughter is an autistic child with complex support needs, including Autism Spectrum Disorder (Level 2 Social Communication and Level 3 Restricted and Repetitive Behaviours with a PDA profile), ADHD, generalised anxiety disorder, and developmental coordination disorder. While she has always required substantial support, the past 12 months have involved a significant escalation in her needs, emotional distress, behavioural challenges, and dependence on adult support for everyday functioning.
For families like ours, the NDIS is not a luxury. It is the difference between survival and collapse.
The supports funded through the NDIS directly affect her ability to remain safe, access education, participate in the community, and maintain her wellbeing. They also determine whether our family can continue functioning physically, emotionally, and financially as carers.
Over the past year, she has experienced severe school refusal driven by escalating anxiety and distress related to demands and expectations. Her emotional regulation has deteriorated significantly, with increasingly frequent explosive behaviours including severe emotional outbursts, verbal aggression, and physical aggression toward family members. These incidents place her and others at risk and require near-constant supervision and co-regulation.
As a result of the severity of her distress, she has recently commenced antipsychotic medication under medical supervision. This was an extremely difficult decision and reflects the seriousness of her current presentation. Despite medication, she continues to require intensive support across all areas of daily life.
She requires hands-on assistance with many self-care tasks that would typically be expected to be independent at her age, including dressing, hygiene, bathing, tooth brushing, and fine motor tasks such as buttons and shoelaces. Without support, these tasks often escalate into distress and behavioural incidents.
Education has become another major challenge. She has been unable to cope safely in a mainstream environment, and we have been forced to change schools again. She will now commence in a Learning Support Unit because this is the only environment assessed as capable of meeting her needs safely. The process of finding an appropriate placement has involved enormous advocacy, emotional labour, research, meetings, and coordination by us as parents.
At home, family life revolves around managing her anxiety, avoiding triggers, supporting transitions, and attempting to maintain emotional safety for everyone in the household. Everyday activities that many families take for granted — attending school, leaving the house, maintaining routines, accessing the community, or completing personal care — require significant planning, supervision, and emotional energy.
Submission 1482
Access to the community for people with disability is a right, not a privilege. Disabled children and adults deserve the same opportunities as everyone else to participate in social, recreational, educational, and community life. For many participants, NDIS supports are what make this possible. Without adequate support, community participation becomes inaccessible, leading to isolation, worsening mental health, exclusion, and reduced quality of life. These supports are not “extras” — they are essential for inclusion, dignity, and equal participation in society.
The cumulative impact on carers is profound.
The physical exhaustion, hypervigilance, emotional strain, sleep disruption, and constant crisis management associated with caring for a child with high support needs cannot be overstated. Families like ours are already operating beyond capacity. Reduced supports would not simply create inconvenience; they would increase family breakdown, carer burnout, mental health crises, educational disengagement, and risks to safety.
I am deeply concerned about the proposed changes to the NDIS, particularly any reduction in supports, narrowing of eligibility, or increased expectations that children must demonstrate “improvement” or engage in ongoing “treatment” in order to justify support.
Autism is a lifelong neurodevelopmental disability. While supports and therapies can improve quality of life, they do not remove disability or eliminate support needs. There is a serious risk that the proposed focus on “permanence” and treatment expectations misunderstands the reality of disability and places unrealistic burdens on families already under extreme pressure.
Children like my daughter often experience fluctuating capacity. There may be periods of relative stability followed by significant deterioration due to burnout, anxiety, developmental changes, school pressures, or mental health decline. The idea that support should only be available where there is measurable improvement fails to recognise the importance of maintaining safety, preventing escalation, and preserving participation and family stability.
In many cases, supports are not about achieving independence in the traditional sense. They are about preventing harm, enabling participation, reducing distress, maintaining education access, supporting regulation, and preserving the wellbeing of the entire household.
I am also concerned that much of the public discussion around NDIS costs has focused on the idea of widespread “rorting,” when in our experience the major cost blowouts appear to stem from inefficient processes, repeated reassessments, delays, and poor decision-making within the system itself. We are being forced into lengthy review and appeals processes simply to obtain reasonable and necessary supports that should have been approved in the first place.
About 70% to 78% of NDIS cases brought before the Administrative Review Tribunal (ART) are ultimately won or settled in favour of the participant, resulting in decisions being varied or overturned. This suggests that many initial decisions are not being made correctly or fairly. Taxpayer money is being spent on lawyers, additional NDIA staff, external contractors, and case management processes because cases were not appropriately dealt with in the first instance, while families are left in crisis waiting for essential supports.
Submission 1482
In our own experience, navigating reviews, complaints, reassessments, and appeals has been incredibly time-consuming, stressful, and adversarial at a time when our focus should be on caring for our child. Families should not have to fight through complex legal and administrative systems in order to access supports that independent evidence already demonstrates are necessary.
Rather than reducing supports for vulnerable participants, reforms should focus on improving decision-making quality, reducing unnecessary bureaucracy, resolving matters earlier, and creating a system that is fairer, more transparent, and less adversarial for disabled people and their families.
I am also concerned that increased barriers to accessing support will disproportionately impact families already overwhelmed by caregiving responsibilities. The administrative burden involved in gathering reports, navigating reviews, responding to changing criteria, and repeatedly proving disability is enormous. Families caring for children with complex needs often do not have the time, finances, emotional capacity, or advocacy skills required to continually fight for essential supports.
Without adequate supports:
- children may lose access to education
- families may experience severe burnout and mental health decline
- behaviours may escalate further, increasing safety risks
- hospital presentations and medication use may increase
- carers may be forced to leave the workforce
- siblings and family relationships may be negatively impacted
- community participation and social inclusion may disappear entirely
The NDIS was designed to support disabled Australians to participate meaningfully in society and to reduce long-term disadvantage and crisis. For our family, it represents the possibility of safety, stability, participation, and hope. Without it, many families will be left in crisis with nowhere else to turn.
I urge the Government to ensure that any reforms to the NDIS remain grounded in the lived realities of disabled people and carers. Funding decisions and policy changes must recognise that disability support is not optional, temporary, or excessive. For many families, it is essential to maintaining safety, dignity, education, mental health, and the ability to function day to day.
Thank you for considering our submission.