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

Submission from a Parent of a Child with Severe Disabilities and NSW Public School Teacher

My name is [Name redacted] and I am the sole parent and full-time carer of my 10-year-old son, [Child’s Name redacted], who has Level 3 non-verbal Autism Spectrum Disorder, moderate Intellectual Disability, Cerebral Palsy, severe Hypermobility Spectrum Disorder, severe hypotonia, and PICA. I also work full-time as a teacher within the NSW public education system and have worked in education for over 15 years.

I am writing this submission because I am deeply concerned about proposed NDIS reforms that may reduce Community and Social Participation funding impacting people with disabilities’ possibilities of accessing communities with the necessary support they require. Adding further to my concerns are the plan to narrow what is considered ‘reasonable and necessary’, and place greater expectations on unpaid carers.

Caring for [Child’s Name redacted] is a 24-hour-a-day role. He requires full supervision and support with every part of daily life including feeding, toileting, dressing, hygiene, meals, continence care, emotional regulation, and safety supervision.

[Child’s Name redacted]’s most dangerous conditions are his severe level 3 non-verbal Autism Spectrum Disorder, combined with moderate intellectual disability and PICA. PICA is a condition where a person compulsively eats or chews non-food items such as plastic, rubber, wood, or fabric. This has resulted in multiple hospital admissions for choking and surgeries to remove foreign bodies and bowel obstructions.

Our day starts around 2:30-3:00am each morning when [Child’s Name redacted] wakes. Bright as a button and firing on all cylinders after 4 hours of sleep!! From wake-up time until his school transport arrives at 8am, I provide care supervision before a support worker attends at 6am to allow me to get myself ready for work. When I finish work each afternoon, we have a support worker for 2 hours between 3-5pm. Support workers have trouble managing his behaviours, so I am often required to be here. Which means little respite for me.

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

Submission 1527

Support workers are unable to toilet during the time of support if I am not home, as he cannot be unsupervised, so I am often home to ensure 2:1 care. has an older sister Hailie, Age 19, however, she recently had to find her own housing due to the danger of living at home and the constant burnout she was facing as his sibling. In his household we get on average 3-4 hours sleep a day.

The physical and emotional impact of caring for alone has been enormous, without living it you wouldn’t even be able to imagine. During the hours of 230am-6am and 5-10pm, when I am solely responsible for his care, I have to take him into the bathroom and engage him when I need toilet or shower myself. This is not appropriate now he is getting older, nor suitable for a parent of a 10 year old boy to do. I cannot sit and read a book, unable to be in another room away from him, or have a friend over for coffee. Even cooking dinner is completed in short bursts.

Over the years, I have sustained hundreds of injuries during behavioural incidents, more of late especially when forcing him to stay in a small bathroom so I can complete my own personal care/toileting, be the target, or move in front of support workers during aggressive outbursts, or staying in his personal space due to having to supervise his PICA behaviours.

For many years, we received very little meaningful help by the NDIS and for that I am very grateful. It was not until was eight years old that he finally received NDIS funding for Community and Social Participation supports which is when we saw his capacity to build on social relationships, manage community visits and build on independence thrive. Those supports have genuinely changed our lives.

Over the last two years, has slowly begun building trust with support workers, tolerating time away from me, and learning how to safely access the community. His behaviours have improved significantly, and he was no longer completely isolated within the home environment. Before these supports, our lives were extremely isolated. During COVID lockdowns, there was effectively no difference to our day-to-day life because we were already unable to safely leave the house or participate in the community. While the world suffered in isolation, we lived a normal day to day life.

Moving forward in addressing the reason for this submission, I am very concerned that supports like Community and Social Participation may be viewed as non-essential under future reforms. For families like ours, these supports are not optional extras. They are what allow children like to develop regulation skills, social tolerance, independence, and safe community access. They are also what allows carers like me to continue coping and working.

My job as a public secondary school teacher begins at 8am and finishes (If I’m lucky) I can leave at 330pm, 5 days per week. This is a career I fought hard to develop prior to birth, and since Having has been very difficult to manage. I often find myself not being able to focus at work due to lack of sleep or preparation tie.

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

Submission 1527

Financially, as a sole parent, I am unable to rely on carer pension and pay for general living expenses. I have been on the social housing waitlist for 9 years, unfortunately I earn too much and there is no housing support for parents of children with severe disabilities who require safe and affordable housing if you have a ‘job that pays well’.

Will I be soon forced to relinquish my position, and quit the permanent role I worked 6 years at university and 7 years of experience to obtain to source housing? That is another fight in the world of a parent of a child with disabilities.

Now to discuss the increasing expectations on unpaid carers without recognising the reality of long-term caring. Families are already stretched beyond capacity. There seems to be an assumption that parents will simply continue absorbing whatever support is removed, regardless of the impact on their own health, finances, safety, or wellbeing. I cannot do this long term. I have been fighting this for a decade already and just keeping my head above the surface in the past two years. With the changes, it’s looking more like I will be forced to pass on care to the state. Yes, relinquish my son due to not being able to provide the support care he needs, imagine being forced to do that with your own child.

Without adequate support, including access to community and social participation, I have no doubt that redacted behaviours would escalate again and our isolation would return, we have recently had this happen due to a funding issue. It has not been simple. My own physical and mental health that is already on the edge would continue to decline, and I genuinely fear reaching a point where I may no longer be able to safely care for him within the home. This is a very scary reality in my life.

I do not want my only son to end up in crisis systems or out-of-home care simply because early and preventative supports were reduced. I have already accessed DCJ multiple times for support and counselling.

What you have read is only a snippet of daily life for redacted and I. I respectfully ask the Committee to consider:

• protecting Community and Social Participation funding for participants with severe disabilities and behavioural needs
• recognising the limits and sustainability of unpaid caring roles
• considering carer wellbeing and safety when making funding decisions
• ensuring “reasonable and necessary” supports are not interpreted too narrowly for families with complex needs

The NDIS has allowed my son opportunities that were previously impossible. It has helped him slowly build connection, safety, and participation within the community. I am deeply worried about reforms that may unintentionally remove the very supports that have made this progress possible.

Thank you for considering my submission.

Submission 1527