National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1677
To whom it may concern,
I am writing to you regarding the proposed changes to the NDIS and the very real impact these changes will have on families like mine.
Firstly, I would like to state the minister in charge of announcing the proposed changes, having absolutely no idea what he was talking about was highly concerning, while everyone clapped and cheered, it was, dehumanising, and scary! 130,000 is not just a number, it is a person! A child, an adult, it doesn’t matter it is vulnerable person!! A person who lives, breaths and bleeds exactly the same as you guys do! Behind that person is an exhausted burned-out carer, that is doing their absolute best on very, very little, with no real income, its just pure love! Then the government goes NAH! You can do more!! We can’t!! We really truly cannot give any more! You cannot take this away!
I think something you also seem to forget… we all vote! Every single person my household are voters! Every single one of those 130,000 are either voters or have voters behind them!
This is what I would like to state for my family.
For the past 20 years, I have been the primary carer for my two younger children. My daughter is 20 years old and lives with Autism, an intellectual disability, and epilepsy. She began having seizures at just nine months old. My son is 18 years old, also Autistic, and experiences severe anxiety that requires medication. Since 2023, he has been completing his education through distance education because he was no longer coping in a mainstream setting.
I also have an older daughter who is married and was recently diagnosed with Crohn’s disease. She has a beautiful three-year-old daughter who lives with multiple disabilities, including Autism and spina bifida.
I manage all of this largely alone. I intentionally use the word “carer†rather than “parent,†because the reality is that I have spent most of my life coordinating care rather than simply being afforded the opportunity to parent my children. We have no safe or reliable family support network, and my husband works 12-hour days to keep us afloat financially. The responsibility of managing appointments, therapies, specialists, schools, and services has fallen entirely on me.
For years, our lives have revolved around occupational therapy, speech therapy, psychology appointments, medical specialists, and implementing therapy plans. Like many carers, I am often dismissed because I am not considered an “expert.†However, while I may not hold formal qualifications, I know my children better than anyone.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1677
I am 43 years old, and while that may seem young to some, the physical and emotional toll of long-term caring has left me exhausted. I live with chronic pain and chronic illness, and I am currently undergoing assessment for Autism myself. I am not incapable, and I am not unstable — I am simply exhausted after decades of carrying responsibilities that never stop.
The NDIS is not a luxury for my family; it is our lifeline. Despite the public narrative, most families accessing the NDIS are not living comfortably or taking advantage of the system. We are surviving day by day, doing everything we can to hold our families together.
I have had little to no ability to maintain employment because of the level of care my children have required throughout their lives. Even during school years, I was frequently called to collect them or manage crises, making regular employment impossible.
Currently, my children are still not funded appropriately, and we are due to attend the NDIS Tribunal on the 4th of June. I am terrified. The NDIS will arrive with legal representation, while my son has only his exhausted and overwhelmed mother advocating for him. Yet I have no choice but to fight, because without appropriate support, I genuinely do not know how we will survive.
In October, we will lose Family Tax Benefit support, and I am facing the reality that I may need to work despite already being stretched beyond capacity. I honestly do not know how we will continue to manage financially, emotionally, or physically.
People living with disability deserve better. They are among the most vulnerable members of our community, and the families caring for them are carrying enormous burdens behind closed doors every single day. My family is only one story among thousands. We are not the “dregs of society,” as public discourse sometimes suggests. We are ordinary people working tirelessly to keep our loved ones safe, supported, and cared for.
I think you have all forgotten that we are people too, we breath, we hurt the same as you! Stop making decisions about us, without us!
I ask that you please consider the human impact these proposed changes will have on families like mine.
Sincerely,