National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission: Submission 1907
Introduction
I am the parent and full-time primary carer of a six-year-old child with profound and lifelong disability. My son has diagnoses including intellectual disability, Autism Spectrum Disorder Level 3, ataxia, developmental epileptic encephalopathy (severe complex epilepsy), and a CACNA1A gene mutation. My son is non-verbal, incontinent, requires assistance with all activities of daily living; he also lacks awareness regarding danger/safety due to life-threatening seizures that necessitate emergency medical intervention.He needs support concerning feeding, medication administration, personal hygiene, mobility communication & community access. We’ve been involved w/NDIS almost four years. While imperfect, its funding changed our lives significantly. The current supports we receive aren’t luxuries—they’re essential tools enabling my kid’s safety, interaction within society, continued skill development & independence. Concerns about many aspects of proposed amendment bill & practical consequences on children/families dealing wtih long-term/disabled conditions are deeply felt here.
Lifelong Disability Repeated Assessments
One concern I have relates specifically towards increased focus re-assessments, plan end dates, as well as repeated justification for ongoing support requirements among participants suffering from permanent/profound disabilities. Some individuals may require short term or temporary interventions where reassessment might be necessary but it must not overshadow the reality some disabling conditions will persist indefinitely. It won’t happen overnight: My child cannot suddenly become independent nor outgrow severe epilepsy intellectual disability or constant supervision/care needed. Repetitive assessments create enormous stress for families every review forces parents onto focusing solely upon what their kids can’t do rather than progress they’ve made and who they truly represent emotionally exhausting process repeatedly explaining vulnerability your child faces to justify basic necessities.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1907
Plan reviews also consume significant time and money through repeated specialist reports and assessments. In cases of permanent disability, this becomes an inefficient use of both family resources and NDIS funding. That money would be better directed toward actual supports and therapies. There is also significant inconsistency within the system. Outcomes can depend heavily on which NDIS employee is assigned to a case and their personal interpretation of disability and funding needs. This creates uncertainty and fear for families who are already under immense pressure.
“Appropriate Treatments” Requirements
I strongly oppose any requirement that participants must undertake “all appropriate treatments” before receiving disability supports. No government body should have the authority to effectively dictate what treatments families must pursue for their child in order to access necessary supports. Children with complex neurological and developmental disabilities are not one-size-fits-all cases. Families work closely with medical specialists and therapists to make highly individual decisions about care, therapies, medications, and quality of life. Supports such as continence products, therapy funding, communication devices, wheelchairs, and supervision supports are not rewards for complying with treatment expectations. They are necessary for safety, dignity, communication, and daily living.
Choice and Control – Self-Management
I strongly oppose any reduction in self-management options under the NDIS. I currently self-manage my son’s funding and believe this is the best option for our family. While self-management does involve administrative work, it allows me to ensuremy son’s funding is used ethically, appropriately, and entirely for his benefit.I support reasonable accountability measures and stricter record-keeping requirements where necessary. However, removing self-management because some individuals have misused the system unfairly punishes families who are responsibly managing supports. I also have concerns about increased restrictions around plan management. I have heard many accounts from families whose invoices were delayed, rejected, or mishandled by third parties. Self-management allows me to ensure supports are delivered properly and funding is used correctly. Removing choice and control undermines one of the core principles the NDIS was originally built upon. The Reality of Full-Time Care
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1907
What is often missing from policy discussions is the reality of what caring for a child with profound disability actually looks like. My care responsibilities do not stop. I provide supervision and care 24 hours a day. Due to severe sleep difficulties and seizure risk, I must co-sleep with my son. There have been many nights over the years where he has remained awake all night and required continuous supervision. This occurs in addition to monitoring for life-threatening seizures. I have personally funded security cameras throughout my home so I can monitor my son at all times, including when I need to briefly leave the room. I have installed additional mirrors in my vehicle so I can constantly observe him while driving due to his seizure risk and inability to communicate verbally. I am currently installing additional in-car monitoring systems to ensure I can safely supervise him even during routine activities. I have had to structure my entire life around maintaining constant supervision. I pay privately for a babysitter for several hours each afternoon so I can continue limited paid work from home. Without this arrangement, I would likely be forced to leave the workforce entirely. Most days I do not have time for my own basic personal care or medical needs because every activity requires planning around my son’s safety and supervision. The hardest part is the relentless nature of 24-hour monitoring and responsibility. The Importance of Current Supports The supports my son receives through the NDIS have made an enormous difference to his quality of life and our family’s ability to function. His wheelchair has significantly improved his ability to access the community and participate in outings safely. It has also given him greater independence and autonomy. Therapy funding has been essential. We have seen meaningful progress over the years, can ongoing therapy is critical to maintaining and improving his quality of life communication mobility functional skills Support worker funding has provided something many carers rarely experience: moments of safety relief Being able shower complete household tasks attend appointments brief ly leav e house knowing child safe invaluable At point families are asking additional funding simply hoping retain support already Consequences Reduced Supports
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1907
If my son’s funding were reduced, the consequences would be immediate and serious. We would face additional financial pressure from having to self-fund continence products and disability-related expenses. I would lose the limited support that currently allows me to manage basic household responsibilities, maintain employment, and attend medical appointments. My son’s safety risks would increase substantially if all supervision and care responsibilities rested solely on me without support. as he grows older, community access would also become increasingly limited many community-based programs services require participants with support workers accompany them. Without funded supports our son risk increasing isolation reduce opportunities independence participate most importantly ongoing burnout would inevitable If I unable sustain level of care due exhaustion lack sleep or financial strain long-term consequence severe likely forced leave employment entirely resulting further hardship increased dependence other systems Reducing does remove need simply transfers burden onto already exhausted families Recommendations:
- Provide greater long term certainty permanent profound disabilities - Reduce unnecessary reassessments repeated evidence requirements lifelong conditions Protect participant choice control including right to self-manage funding Ensure reforms do not unreasonable reliance unpaid carers appropriate recognition Support Reject rigid “appropriate treatment” undermine clinical family decision-making Ensures community participation therapy communication worker funding remain essential extras.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1907
- Improve consistencyandttransparency inplanningfunding decisions.
- Recognise that reducing supports for high-needs participants may ultimately increase costs across health, hospital, mmentalhealth,and social support systems.