National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 4009

to the Senate Committee,

I’m writing on behalf of my small family - myself, my wife , and my son . My family is extremely concerned about how cuts to the NDIS will affect his social and community participation funding, as well as his carer support.

My four-year-old son has Down syndrome and a Level 3 autism diagnosis. He was recently assessed for school placement, and his developmental level was considered equivalent to that of a 6- to-12-month-old infant. However, the psychologist and paediatrician at ISDAS (lllawarra Shoalhaven Diagnostic and Assessment Service) could not make a formal diagnosis regarding his intellectual disability because his autism presents so strongly that it is difficult to determine which developmental challenges stem from autism and which stem from his learning disability related to Down syndrome.

Getting our son onto the NDIS was an extremely difficult process whilst also taking care of his high level of needs. Thankfully LifeStart were helpful and provided us with a support coordinator so that my wife could focus on our son. The amount of phone calls, meetings, paperwork, and bureaucracy involved was a huge task in itself. Navigating the complex NDIS system has been extremely challenging for my wife, as it is time-consuming and overwhelming. Raising already requires an immense amount of work, and managing the NDIS is just one more responsibility added to my partner’s already enormous workload caring for our son.

As ’s father, I work full-time and am the sole income earner, apart from my wife’s carer payment, which also helps us greatly.

      is completely non-verbal and, while he is a very good climber, he is showing little sign of walking

unassisted in the near future. Due to his low muscle tone and gag reflex issues, he cannot eat solid food. Every meal takes a long time to prepare and around 40 minutes to feed him.

He has numerous appointments each week, including physiotherapy, occupational therapy, speech pathology, dietitian and several specialist doctor appointments. These include appointments for his vision, treatment for his feet due to being born with severe talipes, sleep studies, swallow studies, heart operation check-ups, eye checks, hearing checks and many others. The list goes on. My wife , ’s mother, is his primary caregiver.

      is considered high-needs within the NDIS. So much so, that he was moved onto the full scheme

at the age of 3. There are many essential supports funded through the NDIS, including orthopaedic shoes, mobility devices to help him walk, nutritional formula, meal preparation tools, communication devices, a wheelchair, educational tools, and many other necessities.

One of the most crucial supports we receive other than Allied Healthcare is his carers. We currently have one carer who comes on Wednesdays for five hours and another who comes on Thursdays for eight hours. We only began receiving this support after turned three years old. They not only provide care for social interaction, they assist in his therapies and are trained in his complex feeding routine.

After numerous attempts over more than a year, was finally accepted into a daycare program a few months ago, which he attends one day per week for seven hours.

My wife is extremely grateful for the carers because they finally give her some respite to manage extra chores around the house, attend her own medical and allied health appointments, and organise ’s many appointments and therapies. As ’s father, I also do a great deal to help, including making all the dinners, even when I finish work extremely late. I regularly work 12-hour days.

Without carers, we would be in an extremely difficult situation, with very little time to do everything that is required. We have no family that live within 200km of us, and no support network of friends capable of assisting us. Before we received this support, my wife was at breaking point. The carers made her full- time role as ’s caregiver slightly less impossible. She is extremely anxious about these proposed changes to the NDIS.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

If ’s carer hours were reduced, it wouldSubmissionplace enormous4009 physical and mental strain on her well being.

There is no way we could have raised without this huge support network around him. As he gets older, some things become easier while others become much harder. It would be detrimental not only to ’s wellbeing, but to our entire family’s wellbeing, if these supports and appointments were reduced or stopped.

The contribution ’s carers make is enormous. I never see them distracted or disengaged. They are constantly interacting with him, helping him learn and develop. They have also become extremely important people in his life and provide him with valuable social interaction that he otherwise would not receive.

Our entire lives revolve around caring for a child with very high needs, but all of these people help give quality of life and opportunities for development that he would otherwise miss out on.

We are also extremely anxious that cuts to community participation funding will greatly reduce his interaction with the outside world. These supports are crucial to his development and wellbeing.

I have written this letter on behalf of my wife because she is extremely time-poor. Otherwise, she would do a far better job of explaining the realities of how demanding full-time care for truly is.

Sincerely,