National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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.

National Disability Insurance Scheme Amendment Bill

Submission 1482

Access to community participation rights: disabled children adults deserve same opportunities as everyone else social recreational educational life. NDIS support makes this possible without adequate support becomes inaccessible leading isolation worsening mental health exclusion reduced quality these supports extras inclusion dignity equal society cumulative impact carers profound physical exhaustion hypervigilance emotional strain sleep disruption constant crisis associated caring child high needs cannot overstated Families already operating beyond capacity Reduced would create inconvenience increase family breakdown carer burnout mental crises disengagement risks safety deeply concerned proposed changes particularly any reduction supports narrowing eligibility increased expectations children must demonstrate improvement engage ongoing treatment justify support Autism lifelong neurodevelopmental disability While supports therapies can improve quality do remove eliminate support serious risk focus permanence treatment misunderstands reality places unrealistic burdens under extreme pressure Children like my daughter often experience fluctuating periods relative stability followed significant deterioration due burnout anxiety developmental changes school pressures or mental decline idea that should measurable improvement fails recognise importance maintaining safety preventing escalation preserving participation and family stability In many cases not about achieving independence traditional sense They prevent harm enabling participation reducing distress maintain education access supporting regulation preserve wellbeing entire household also concern public discussion around NDIS costs focused widespread rorting our experience major cost blowouts appear stem inefficient processes repeated reassessments delays poor decision-making within system itself being forced lengthy review appeals simply obtain reasonable necessary supports approved first place About 70% to 78% of NDIS cases brought before Administrative Review Tribunal (ART) ultimately won settled in favour participant resulting decisions varied overturned suggests initial are made correctly fairly Taxpayer money spent lawyers additional NDIA staff external contractors case management because were appropriately dealt with instance families left crisis waiting essential supports

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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.