Submission regarding proposed NDIS legislative amendments

Please find attached my submission regarding the proposed NDIS legislative amendments. As the parent of a child with Autism Spectrum Disorder Level 3 accessing the NDIS, I support measures aimed at improving the sustainability, integrity and effectiveness of the Scheme. However, I am deeply concerned that several proposed amendments risk further shifting disability support responsibilities onto families under the broad concept of “parental responsibility”. Parents of children with significant disabilities already undertake extraordinary levels of unpaid care, advocacy, coordination, behavioural support, emotional regulation, supervision and crisis management. Much of this care extends well beyond what would reasonably be expected in typical parenting. For many families, this level of care is relentless and all-consuming. It impacts employment, financial stability, relationships, mental health and the ability to participate in ordinary family life. Many parents reduce work hours or leave the workforce entirely because appropriate supports are unavailable or inconsistent, placing families under significant financial strain at the same time they are managing increased costs associated with disability. I am concerned that provisions relating to “functional capacity”, supports arising directly from disability, permanence criteria, and interaction with mainstream service systems may unintentionally narrow access to essential supports by reclassifying disability-related care as ordinary parenting responsibility. For children with ASD Level 3, the distinction between parenting and disability support is critical.My child’s needs are not limited to standard parenting tasks. They include:• constant supervision for safety• management of dysregulation and behavioural escalation

•   support with communication and social interaction

• assistance with emotional regulation
• sensory management
• inensive coordination across school, health and therapy systems
• osupport to access the community safely
• emanagement of transitions and routine disruption
• sympport during episodes of distress, burnout or shutdownThese supports arise directly from disability-related functional impairment and should not be reframed as parental obligations simply because the participant is a child.Without appropriate supports, children and young people with significant disabilities face increasing isolation, exclusion and reduced access to their communities.Families may become

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

Submission 2008

unable to safely access education, recreation, therapies, social opportunities or even basic community participation. The consequences are not only practical but deeply emotional —participants can become isolated from peers, excluded from meaningful experiences and deniedopportunities for development, independence and connection simply because adequate support is unavailable. I ask that the legislation explicitly recognise:

1. That parents are not a substitute workforce for funded disability supports.
2. That the presence of a committed parent does not reduce the participant’s level of disabilityor support need.
3. That unpaid caregiving provided by families should not be assumed to be unlimited,sustainable or clinically appropriate.
4. That carers and parents are at significant risk of burnout, financial disadvantage, socialisolation and mental health impacts when disability supports are reduced or denied.
5. That “reasonable parental responsibility” must be clearly defined and separated fromdisability-specific care requirements. I also request that functional capacity assessments for children with neurodevelopmental disabilities:• consider the cumulative impact of care across all environments, including home, schoolandcommunity settings• include substantial weighting of parent and caregiver evidence• recognize fluctuating presentations and masking behaviours• be conducted by assessors with appropriate autism-specific expertiseIn relation to the proposed concept of “all appropriate treatment” and permanence, I stronglyurge Parliament to recognize that Autism Spectrum Disorder Level 3 is a lifelongneurodevelopmental disability.Families should not be required to repeatedly demonstratepermanence through ongoing therapy participation or treatment attempts in order tomaintain access to necessary supports. Finally, while sustainability and fraud prevention are important objectives, these reformsmustnot create a system where families are expected to absorb increasing levels of unsupporteddisability care in order to compensate for reduced scheme expenditure.The sustainabilityof the NDIS cannot depend upon the exhaustion, financial hardship andemotional collapse of parents and carers.A sustainable Scheme must also protect thewellbeing,dignity and inclusion of the families and participants who rely upon it every day.Thank you for considering this submission.