National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1226
Submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment Bill 2026 To the Committee, I am writing this submission not as a policy expert, lawyer, or politician, but as a mother and full- time carer trying every day to keep my child safe, supported, and alive. My son is 15 years old. He lives with Autism Level 3, intellectual disability, ADHD, severe anxiety, depression, and significant mental health risks. He is bright, funny, caring, and deeply loved. He is also profoundly vulnerable. He also has a younger brother, 13 years old with Autism level 2, ADHD, severe mental health issues, who is also homeschooled not by choice but because school couldn’t cater to his complex needs.
For our family, the NDIS is not an optional extra or a luxury. It is the difference between survival and collapse. I understand the need to protect the sustainability of the NDIS. I understand the frustration Australians feel when they hear about waste, fraud, or exploitation within the system. Families like mine want accountability too. But I am deeply afraid that reforms focused too heavily on cost reduction, reassessment, compliance, and restriction will hurt the very people the scheme was created to protect. Behind every “participant” is a human being. Behind every “support package” is usually a family already stretched beyond breaking point. My son is no longer able to attend mainstream school. He was severely bullied to the point where continuing to send him became unsafe. We did not choose homeschooling because it suited our lifestyle. We chose it because we were trying to keep our child alive. Like many families caring for children with complex disabilities, our lives revolve around managing risk, emotional regulation, appointments, therapies, supervision, crisis prevention, paperwork, and exhaustion. There are no weekends off. No real breaks. No guarantee that tomorrow will be easier. The administrative burden alone can feel overwhelming. Families are constantly required to prove and re-prove disabilities that are lifelong and permanent. We gather reports, retell trauma, justify supports, complete forms, attend reviews, and live with ongoing fear that essential supports could disappear because of changing policy language or administrative interpretation. Each reassessment is not simply a “review process.” It is stress. It is fear. It is sleepless nights wondering whether someone behind a desk truly understands the reality of caring for a vulnerable child with complex needs. I am deeply concerned about proposed changes that appear to tighten eligibility requirements and expand reassessment and compliance powers. Autism, intellectual disability, and severe mental health challenges are not conditions that can simply be “treated away.” Supports are not replacing parenting. They are what allow families like ours to function at all. Without appropriate support: • carers burn out, • families break down, • participants become isolated, • mental health deteriorates, • and crisis services ultimately carry the burden. The NDIS often saves money in the long term by preventing hospitalisations, homelessness, institutionalisation, family violence, and mental health crises. But those outcomes are harder to measure on a spreadsheet than annual budget targets.
Real-world impact of inappropriate funding decisions One of my greatest concerns is that the current direction of the NDIS increasingly prioritises assumptions, rigid frameworks, and administrative decisions over the lived reality of participants and families.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1226
Our family has recently experienced this directly. My son’s support worker funding was significantly reduced because the NDIS determined that he “should” be attending school and therefore would not require that level of support during the day. The reality is that he cannot safely attend school. He was severely bullied, his mental health deteriorated significantly, and continuing mainstream education became unsafe for him. This is not a parenting preference or lifestyle choice. It is a consequence of disability, trauma, and lack of appropriate educational support. The loss of support worker funding has already had a noticeable negative impact on his wellbeing, emotional regulation, independence, and community participation. What is most heartbreaking is that this support was actually working. For the first time in years, we were seeing genuine progress: • increased confidence, • improved emotional regulation, • development of life skills, • safer community access, • and growing independence. We finally had hope that with consistent support he may one day require less intensive care and become more independent in adulthood. That outcome would not only improve his quality of life — it would ultimately reduce long-term costs to government systems. Instead, funding for practical supports that were clearly effective was reduced, while funding was allocated for services we did not request and that our son does not engage with effectively, including support coordination and therapies that do not meet his current needs. It is deeply frustrating to see lower-cost, highly effective practical supports removed while more expensive and less effective services remain funded simply because they align more neatly with administrative expectations. Our son’s support worker hours were helping him actively build capacity, life skills, confidence, and independence in real-world environments. Removing those supports does not reduce disability. It simply shifts the burden back onto families while increasing the likelihood of future crisis, isolation, regression, and higher long-term support needs. Families living this reality need the NDIS to listen to what is actually working, not what should work “on paper.” I urge the Committee to ensure that future reforms: • allow genuine flexibility and individualisation, • recognise non-traditional educational circumstances where disability prevents school attendance, • and place greater value on participant outcomes and functional progress rather than rigid assumptions or standardised funding models. I am also concerned by the increasing use of standardised systems and automated decision- making within the NDIS. Disability cannot always be reduced to checkboxes, formulas, or generic assessments. A child who appears “functional” on paper may still require constant supervision to remain safe. A family may appear to be “coping” only because carers are sacrificing their own health, financial security, careers, and wellbeing to hold everything together. Many carers continue because there is simply no alternative. I ask the Committee to remember that participants and families are not obstacles to scheme sustainability. We are the reason the scheme exists. Most families are not asking for luxury or excess. We are asking for stability, dignity, safety, and the ability to give our children the best chance at a meaningful life. Please ensure that reforms: • do not further traumatise disabled people and carers, • do not create additional barriers for vulnerable participants, • and do not punish genuine families in the pursuit of reducing costs. A sustainable NDIS should not only be financially sustainable. It must also be humane. Thank you for taking the time to read my submission and consider the lived reality behind these policy decisions. Sincerely,