Submission 2388
To the Senate Committee,
My name is and I am a mum to two children under six. I live with severe physical and neurological disability and rely on the NDIS every day not only for many basic daily tasks and personal care needs that most people take for granted but also to participate in life and care for my children.
Before illness changed my life almost overnight, I was a social worker, active mum, and active member of my community.
I now use a powered wheelchair and cannot safely leave the house on my own, even with my children, without a support worker. Without adequate support, many activities also become physically unsafe for me and my children.
Submission 2388
I also understand that the NDIS needs to be sustainable long term, and like many people who rely on it to live their lives, I care deeply about that sustainability.
There absolutely is waste, overcharging, and inefficiency within parts of the system that should be addressed. Previous reviews and inquiries have already identified opportunities to reduce costs and improve the system without removing essential supports that allow disabled people to safely live their lives and participate in ordinary life.
What is difficult is that many participants who rely on these supports to survive and participate in life did not create those systemic problems, yet are now carrying the consequences of significant cuts and restrictions.
Submission 2388
My fear is that essential participant supports are being reduced before those broader systemic issues are properly addressed.
What worries me about these changes is that there seems to be a misunderstanding of what support and “community participation” actually look like for someone like me, and many others.
For me, it is not art classes or cooking groups.
It is being able to get my children to school, take my child to a doctor’s appointment, get to my son’s school assembly and see him receive an award, attend parent teacher interviews, see family and friends, manage a playdate, go to the park, or sit outside painting with my kids in the backyard.
Those things might sound small, but they are actually the moments that make up a life. They are what allow me to still be a present mum despite profound disability.
Therapy supports are also not optional extras for me. They help me maintain the limited level of functioning I still have and stop further deterioration. Without them, my world becomes smaller very quickly.
After years of severe illness, my children are finally getting parts of their mum back again. I am finally starting to participate in life a little more instead of just surviving.
The thought of losing those moments again is devastating.
There is a lot of discussion about “foundational supports,” but those supports do not currently exist in any meaningful way. And even if they eventually do, I worry they still will not understand or accommodate the reality of being both severely disabled and parenting very young children, which is often my experience when trying to work with large organisations.
My life does not fit neatly into categories of “medical,” “social,” or “parenting” support. I need supports that are flexible and actually work for the reality of different disabilities, different lives, and different family situations.
I have also found that more rigid provider structures do not always work well for people with complex disabilities and young children. Flexibility, consistency, and support workers who understand my medical needs and family life are incredibly important.
Independent support workers have often been what made participation in family life possible for me. They also allow funding to stretch further and be used more effectively. All of my independent support workers would be happy to become registered, but the current system is too difficult, expensive, and restrictive, and is largely designed around large providers.
At minimum, there should be a simple and affordable pathway for independent workers to access appropriate screening and low-level registration without needing to work under a large provider.
Submission 2388
I genuinely do not think I could have managed the NDIS without support coordination and plan management. Even with a background in social work, navigating the system while living with severe disability is incredibly difficult and cognitively demanding.
When my previous plan manager was bought out by a large provider, I experienced significant problems and moved back to a smaller provider very quickly. I have also had difficult experiences with large contracted agencies outside the NDIS, including poor communication, unreliable staffing (whilst still charging), and situations where there was very little understanding or care about why unsuitable or inconsistent support was harmful for me and my family.
When support is both essential and difficult to access, poor quality or inflexible support can become harmful.
I am concerned that moving toward large commissioned provider models risks creating major power imbalances where participants have little real choice or ability to leave if supports are not working well. When people cannot leave, there is also far less motivation for large providers to improve the quality or flexibility of their support.
I also worry that some of these changes reinforce the idea that disabled people should quietly stay home and be grateful for what they get. I also worry these attitudes feed into the idea that disabled people should not or cannot parent. My support workers do not replace me as a mother. They are what make it possible for me to safely be one.
I am not asking for extra, I am asking for the supports that allow me to live and to remain part of my children’s lives and part of my family life.
Please do not design systems that only allow disabled people to survive at home, rather than participate in ordinary life.
Can you imagine not being able to take your children to the park, attend their school assembly, see them receive an award, go to a parent teacher interview, or even take them to a doctor’s appointment without support?
And then imagine finally getting some of those moments back after years of severe illness, only for the support that makes them possible to be reduced or removed.
These are not luxuries or extras. These are the ordinary but deeply meaningful parts of life and parenting that people cherish when they look back on their lives.
Most of my support is already used on essential daily life, keeping me alive, medical appointments, and parenting responsibilities. There is no excess. If supports are reduced by 20– 50%, it is these moments and parts of life that disappear first.
Submission 2388
I ask the Committee to please recognise that community participation includes ordinary family and parenting activities, not just formal programs or group activities.
Please preserve flexibility for people whose disabilities, family lives, and support needs do not fit neatly into rigid categories or service models.
I have personally had decisions made about my supports that were clearly not fit for purpose and later needed correcting through review processes. Each time, it has taken enormous time, energy, advocacy, and emotional capacity while already living with severe disability.
It is deeply concerning to me that these checks and balances appear to be being eroded. For people with complex disabilities, the consequences of poor decisions are not minor. They directly affect safety, health, parenting, isolation, and the ability to just live.
Please also ensure independent support workers remain a viable option for people where they provide safer, more flexible, more consistent, and more affordable support. For many of us, they are the reason our funding can stretch far enough to actually participate in life.
Most importantly, please do not reduce supports for people with severe and complex disabilities before genuinely workable alternatives are properly in place.
But more than anything, I ask you to please seriously consider what is truly being taken away from families like mine, and how you would cope if it was your life or your family.
Thank you for listening to lived experience.