National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2406
NDIS Bill Submission (Anonymous)
I am submitting this anonymously because I fear negative consequences for my cousin’s NDIS funding. I personally know families whose plans have been significantly reduced despite profound disability.
I am the primary carer for my 13-year-old cousin, who has lived with me for the past 4.5 years. He has cerebral palsy with right-sided hemiplegia, a moderate intellectual disability, autism, ADHD, epilepsy and a significant trauma history. The severity of his disabilities qualifies him for a specialist school placement.
My cousin’s parents were unable to meet his needs, and he was raised by my mother from the age of 2.5 years. As her health declined, NDIS supports enabled him to remain in her care for longer than would otherwise have been possible. When she suffered a heart attack, he moved into my care.
At that time, his behaviour was extremely challenging. He displayed severe aggression including hitting, kicking, biting, hair-pulling and property destruction. Without NDIS- funded supports, it is likely the placement would have broken down, resulting in further instability, trauma and escalating disability-related needs.
Today, our lives look very different. Through a combination of allied health supports, behaviour support, respite and Social and Community Participation funding, my cousin is thriving. His aggression has reduced significantly, he participates in community activities, has friendships, pursues interests, and enjoys a meaningful relationship with my mother, whom he sees most days after school.
Social and Community Participation funding has also enabled me to continue working. This benefits my own wellbeing while allowing me to maintain financial security, pay my mortgage, contribute to my superannuation and save for my cousin’s future.
I am concerned by suggestions that parents should assume greater responsibility for delivering therapeutic and developmental supports. Parenting a child with severe disability already involves significantly more than typical parenting. Families are expected to support physical development, communication, emotional regulation, executive functioning, social skills, behaviour management, self-care, community participation and independence. Parents cannot effectively fulfil all of these roles while also maintaining a healthy parent-child relationship.
One of the most important lessons I learned was that my primary role needed to be his caregiver and family member, not his therapist. Allied health professionals, therapy assistants and support workers allow children to develop essential skills while preserving family relationships.
The impact of allied health support has been substantial:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2406
Behaviour Support provided strategies that dramatically reduced my cousin’s morning aggression and improved family functioning.
Play Therapy helped us understand the emotional drivers behind his behaviour and respond more effectively during periods of stress and change.
Physiotherapy has enabled him to walk, run, jump and ride an adapted tricycle. He has developed strength, balance, coordination, endurance and confidence while also building social connections through group programs.
Occupational Therapy continues to improve the function of his affected hand, increase his independence and build skills for everyday tasks such as preparing food, problem- solving and managing frustration.
Speech Therapy played a critical role in developing his communication skills from early childhood, enabling him to engage more meaningfully with those around him.
I also wish to highlight the importance of respite. Increasingly, the phrase “parental responsibility” is being used to justify funding reductions. However, caring for a child with significant physical disability, intellectual disability, autism, ADHD, behavioural challenges and sensory needs extends far beyond ordinary parenting responsibilities.
Without regular respite, caregivers face exhaustion, burnout and declining physical and mental health. Respite is not a luxury. It is an essential support that enables carers to continue providing safe, stable and effective care. When carers are supported, children remain in stable family environments, avoid placement breakdowns and achieve better long-term outcomes.
My cousin’s progress is not the result of one support in isolation. It is the result of a coordinated package of NDIS-funded supports that has strengthened his skills, improved his quality of life, maintained family stability and reduced the likelihood of far more costly interventions in the future.