National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2345
I am making a submission to Parliament regarding the ‘Securing the NDIS for Future Generations’ Bill.
THIS BILL MUST NOT BE PASSED.
I am writing this on behalf of my son. I am his mother, his carer and his advocate.
My son lives with Level 3 Autism. He is non-verbal. He also has an intellectual disability, high anxiety & Epilepsy. He relies on NDIS Funding to allow him to get out of bed, to shower, to toilet, to eat. This is the funding that allows him to leave our home and remain safe. This is the funding that allows myself and the rest of my family to stay employed and continue contributing to society knowing that he is safe while we work. Our family live the reality of supporting a family member with a disability. To our family, the NDIS is not an added bonus, it is the difference between our family surviving or collapsing under the unsurmountable strain placed on us just to live.
We understand the importance of ensuring the NDIS remains sustainable and has a high integrity within our society. By cutting NDIS funding, this means to a person with significant disabilities (like my son) and their families, that you are cutting their lifeline. Without the added support that NDIS funding provides, the consequences are severe and life threatening.
The proposed reforms seem to be highly focused on limiting what is considered reasonable and necessary to a personal with a disability.
It is reasonable for an Australian adult person to be able to choose who assists them and at what time with getting out of bed, showering, toileting and eating when the are unable to do this on their own. It is reasonable not to expect that an aging family member be relied on to handle all these tasks for a fully grown adult.
It is necessary for an Australian adult person to get out of bed each day, to shower, toilet and eat. It is necessary for an adult person to be able to leave their home and experience community events, to work, to socialise with peers of their choosing.
For Australians with intellectual disabilities, psychosocial disabilities, behavioural complexities, communication difficulties and high support needs, this is not possible without the support of a team of support workers. It is not sustainable for a family member to be able to do this each and every day.
My son needs his support workers to provide not only supervision to him but assist him with emotional regulation, ensure behavioural support is implemented when needed and provide crisis support within the home and community.
Reducing his capacity to pay his support workers by reducing his Assistance with Social, Economic and Community Participation Funding, reduces his ability to be a part of his community which is a basic human right. It reduces his ability to access his community, to socialise and work within his community. It will increase his isolation from society. It will take away his chance of a meaningful life within our community.
Reducing and restricting the flexibility of how these funds can be used, will not ensure the longevity of the NDIS, it will take life away from the people that rely on this funding. It will take away their dignity, their choice, their independence, their ability to contribute meaningfully to society and their opportunity to be included.
NDIS costs need to be reduced from overheads such as external lawyers and consultancy fees. Let’s crack down on the fraud from registered providers, not cut back the funding that genuine NDIS participants desperately need.
The NDIS was intended to support people with permanent and profound disability, to support their inclusion, participation, dignity, choice and independence in society.
As explained above, my son has multiple disabilities. These intertwine, overlap and integrate with each other. They cannot be individualised. The NDIS cannot be changed to only allow for one disability per person. This is not realistic and will only reduce the capacity of my son to be able to contribute meaningfully to our society.
The people proposing this Bill do not seem to understand the mental exhaustion that constantly comes with having to fight for basic human rights, safety and support for my son. They do not seem to understand that our family (and many like ours) have spent years having to prove my son’s disabilities, prove his genuine needs and prove that he requires extensive support. We are constantly having to explain to different people the same things over and over again. We constantly need to prove that without the supports that the NDIS provide, his life is at risk.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2345
Living with and loving a person with a severe disability is exhausting both physically and mentally. We don’t need the constant added stress associated with each review or policy change. We don’t need the worry about what will happen to our son should these supports not be made available to him.
I am speaking from lived experience, My caring role involves sleepless nights, crisis management, constant appointments, behavioural incidents, emotional exhaustion and years of fighting and advocating for my son to have the supports he requires that I cannot provide for eternity. I fight to ensure, when I am no longer here, that he will still be able to live a fulfilling life within our society, not in isolation and excluded from society.
I ask the Government to reconsider these reforms that will reduce quality of life for our whole family (and many like us), increase carer burnout, limit opportunities and meaningful contribution to society. These reforms will create isolation for my son and reduce our ability to function as a family.
From a mother on behalf of a son who’s life will be severely and negatively impacted from these proposed reforms.