Submission 2782 - Supplementary Submission
To Whom it may may concern within the Senate committee,
I am writing to you with deep concerns around proposed changes for the NDIS. The NDIS has changed my life. Not because it gave me luxury. Not because it gave me “extras”. But because it gave me a chance to actually live instead of merely survive.
People who do not live with disability often do not understand this.
The NDIS is not a bonus system where people with disability are living extravagant lives. For many of us, the NDIS is the difference between isolation and participation, despair and hope, survival and complete breakdown.
What terrifies me most about this Bill is the increasing power being handed to Parliament and ministers to make decisions about the lives of people with disability without truly knowing us, listening to us or understanding the reality of our lives.
Honestly: I am frightened.
I am frightened that people whose disabilities are not considered “obvious enough” will be abandoned and left behind. I am frightened that people will be forced to constantly prove their suffering, constantly justify their existence and constantly fight to be treated like human beings worthy of support.
That is not justice. That is not reform. That is cruelty dressed up as financial responsibility.
Yes, there have been significant and real problems within the NDIS. Yes, there have been providers who have manipulated the system or acted dishonestly. Deal with them. Hold them accountable. But stop punishing people with disability for failures we did not create.
Why are the people who need support the most always the first ones expected to carry the burden? Taking away support is not a small thing. It is not a budgeting exercise. It is not numbers on a spreadsheet.
For people like me, taking away support means taking away freedom, dignity, independence, mental health, safety and community connection. It means shutting us out of society while pretending we still belong in it.
The proposed cuts to social and community participation are devastating. I am a mother. I deserve to be part of my community. I deserve to participate in life with my children. I deserve opportunities to contribute, connect, grow and exist outside the walls of my home.
Why is that treated like it is optional?
Why are disabled people expected to accept lives of isolation that nobody else would willingly accept for themselves?
Submission 2782 - Supplementary Submission
Before the NDIS, I knew what isolation felt like. I knew what it felt like to slowly disappear emotionally and mentally because the world became smaller and smaller and smaller. I was not living. I was existing. There is a difference.
No human being should have to fight this hard simply to participate in society.
And I genuinely believe that if these supports are stripped away, Australia will see worsening mental health, worsening family breakdown and rising suicide among people with disability and carers. You cannot remove people’s ability to participate in life and then act surprised when despair follows.
Families are already exhausted.
People speak as though family members can simply “step in” and provide care forever. Caregiving is physically exhausting. Emotionally exhausting. Financially exhausting. Families break under that pressure. Relationships break under that pressure. People collapse under that pressure.
When families finally break apart after years of carrying impossible loads, where is the support then?
Choice and control must be protected because people with disability are the experts in their own lives. We know what we need. Our families know what we need. Removing choice and control is not reform. It is power being taken away from the very people whose lives are affected the most.
Broad funding cuts without proper individual understanding are reckless and unfair. Disability is complex. Human lives are complex. You cannot understand someone’s reality from paperwork, assumptions or political talking points.
If government genuinely wants fair reform, then spend time with real people. Sit in our homes. Watch what daily life actually involves. See the exhaustion. See the barriers. See the emotional toll. See the reality before making sweeping decisions that affect millions of lives.
Assessments must be fair and transparent. People with disability should not be terrified to tell the truth about their lives because they fear losing support. Right now many people are living in fear. Fear of saying the wrong thing. Fear of not sounding disabled enough. Fear of being abandoned.
That fear is real.
People with complex and high support needs must be protected. You cannot understand complexity from a checklist. You cannot understand someone’s life without listening to them properly.
Submission 2782 - Supplementary Submission
And most importantly, people with disability and their families must be involved in designing these changes. If our voices are removed from this process, then this becomes something done to us instead of with us. That is not democracy. That is not justice. honestly, it starts to feel like control.
My greatest fear is that in trying to “fix” the NDIS, the government will crush ordinary people and families who are already struggling to survive each day.
Please stop talking about people with disability like we are financial problems to manage.
We are human beings.
We deserve the right to live full human lives.