Submission 1907

Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill

Submitted by: Parent of a child with complex disability

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, has no awareness of danger or safety, and requires constant supervision due to life-threatening seizures which require emergency medical intervention. He requires assistance with feeding, medication administration, personal hygiene, mobility, communication, and community access.

We have been involved with the NDIS for almost four years. While the system is far from perfect, NDIS funding has been life-changing for my son and our family. The supports we currently receive are not luxuries. They are essential supports that allow my child to remain safe, communicate, access the community, and continue developing skills and independence.

I am deeply concerned about many aspects of the proposed NDIS Amendment Bill and the practical consequences it may have for children and families living with lifelong and complex disability.

Lifelong Disability and Repeated Reassessments

One of my greatest concerns is the increased focus on reassessments, plan end dates, and repeated justification of support needs for participants with permanent and profound disability.

I understand that some participants may require short-term supports or temporary interventions, and reassessments may have a place in those circumstances. However, there must be recognition that some disabilities are lifelong and will never resolve.

My son will not suddenly become independent. He will not outgrow severe epilepsy, intellectual disability, or the need for constant supervision and care.

Repeated reassessments create enormous stress for families. Every review requires parents to focus on everything their child cannot do rather than the progress they have made or the person they are. It is emotionally exhausting to repeatedly explain how vulnerable your child is in order to justify basic supports.

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 ensure my 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

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, and ongoing therapy is critical to maintaining and improving his quality of life, communication, mobility, and functional skills.

Support worker funding has provided something many carers rarely experience: moments of safety and relief. Being able to shower, complete household tasks, attend appointments, or briefly leave the house knowing my child is safe has been invaluable.

At this point, many families are not asking for additional funding. We are simply hoping to retain the supports we already have.

Consequences of Reduced Supports

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 and services require participants to attend with support workers and do not allow parents to accompany them. Without funded supports, my son risks increasing isolation and reduced opportunities for independence and participation.

Most importantly, ongoing burnout would become inevitable.

If I become unable to sustain the level of care required due to exhaustion, lack of sleep, or financial strain, the long-term consequences for our family would be severe. I would likely be forced to leave employment entirely, resulting in further financial hardship and increased dependence on other systems.

Reducing supports does not remove need. It simply transfers the burden onto already exhausted families.

Submission 1907

7. Improve consistency and transparency in planning and funding decisions.

8. Recognise that reducing supports for high-needs participants may ultimately increase costs across health, hospital, mental health, and social support systems.

Conclusion

Families caring for children with profound disability are already carrying enormous responsibility every hour of every day.

The NDIS has provided supports that have improved my son’s safety, communication, development, and ability to participate in the community. It has also helped our family remain functional and sustainable under extremely demanding circumstances.

I understand the need for accountability and sustainability within the NDIS. However, reforms must not come at the expense of the safety, dignity, and wellbeing of people with lifelong and complex disability.

I ask the Committee to ensure that any changes to the NDIS protect the people who rely on these supports not for convenience, but for survival, safety, communication, and quality of life.