National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1261
To whom it may concern,
I am writing as the parent and primary carer of my 13-year-old son, Heath Pittiglio, who is an NDIS participant with complex disabilities and high daily support needs.
Heath has Level 3 autism, ADHD, a rare chromosome deletion, Mast Cell Activation Syndrome (MCAS), chronic eczema, fatigue, emotional dysregulation, developmental challenges, and significant sensory and nervous system difficulties. He requires constant supervision, extensive emotional support, assistance with daily living, and coordinated medical and therapeutic care.
The NDIS has been critical in helping Heath access therapies, support workers, regulation strategies, equipment, respite, and services that allow him to remain safely at home and participate in the community. Without this support, myself and my son would not cope.
Our daily life is extremely challenging. Heath experiences periods of profound autistic burnout, severe fatigue, sensory overload, repetitive behaviours, emotional dysregulation, sleep difficulties, toileting regression, and ongoing medical issues. Small changes or stressors can lead to major dysregulation and exhaustion for both Heath and myself as his primary carer.
As a parent carer, I provide support around the clock. The emotional, physical, and financial pressure is immense. Access to respite and support coordination is essential to prevent family breakdown and protect both Heath’s wellbeing and my own mental and physical health.
I am deeply concerned about any NDIS changes that may reduce flexibility, limit access to supports, increase reassessments, or make it harder for families with complex children to receive appropriate funding and understanding. Families like ours already spend enormous time gathering evidence, attending appointments, advocating, and trying to keep our children safe and regulated.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1261