National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 183
NDIS submission 2026
I am a 58 year old struggling with CPTSD, depression and anxiety. I grew up amid domestic violence. My childhood was heavily coloured by physical violence and emotional abuse. First committed by my father and once old enough, by my brother. My brother often threatened to kill my family, then burn the house down. He bragged about shooting the next door neighbours cat. I found its lifeless body between our house and the side fence. It obviously died in agony, as it’s mouth was open unnaturally wide. My brother pointed his .22 rifle at my nose and threatened to blow my brains out.
Once when I was 15 years old and the police were again at our house due to my brother’s frequent violent outbursts, I asked the officer if I could press assault charges. The policeman said that this was a bad idea, because they would just lock my brother up over night and then he would be released in the morning, even angrier. I asked him what I was supposed to do then? He replied that I should leave home (to a 15 year old girl) Back then, there was little to no help or support. The mental health system was like a revolving door.
When my brother was 24 years old, he beat up my father (kicking him while he was on the ground etc) my parents kicked him out of the house. We all went into hiding. My parents stayed at a motel. My sister stayed with friends. I stayed with my boyfriend’s family. We fully expected my brother to come after us and kill us, like he had constantly threatened. He did not. He killed himself instead.
I mention this, to give a little bit of context, to my permanent and ongoing struggle with my own mental health difficulties. My brain was wired for threat at a very young age and my ongoing mental health challenges have been compounded over the years by other significant traumas. For example 2 unreported sexual assaults and being bullied out of my job as a teacher from a position I had held for 18 years. (I was just one of many who were unethically, but legally forced to resign from this elite private school…so it wasn’t ‘just me’)
After I had a nervous breakdown, over the years I tried all available therapies, CBT, ECT, DBT, EMDR, TMS, various psychologists and psychiatrists . I read copious amounts of ‘self help’ books. I undertook multiple courses and programs. During this time and whilst working and raising a family of 3 daughters, I tried really, really hard to keep functioning.
I did not have family to help me. I did not have a husband who helped me. My husband had childhood leukemia, (including 2 relapses from the age of 9 years old - 18 years old). He did not have as much stamina as most people his age. But he is also a product of the patriarchy. He was conditioned to believe that a husband’s role and sole responsibility, is to earn an income and mow the lawn; not change nappies.
Because of my husband’s health history we undertook a sperm count when we got married. We were told we had a low (1 in 200) chance of conceiving. So we tried every method and trick to make a baby. After 3 years of trying, we welcomed a healthy baby girl. Unfortunately I suffered from post natal depression and my baby was anxious and had trouble with sleep. I did not at that point have a driver’s licence. I was isolated with no support.
My husband and I never bothered with contraception because we thought out first born was a miracle baby. A little over 2 years later I discovered I was pregnant. I again struggled with post natal depression. After this we used contraception. But two years later I was pregnant with a third daughter.
I struggled with working, raising three daughters, running a house hold and all that entails. The night before my eldest daughter sat her final year 12 exams, one of her school friends died by suicide. Three years later my eldest daughter was sexually assaulted. A few months later, she killed herself.
I have had to live with the grief of not only losing my precious daughter, but the knowledge that I have inadvertently passed on generational trauma to my girls. My middle daughter is officially diagnosed with Autism and ADHD. My youngest daughter blames me for her older sister’s death. She has cut me off and currently resides in a different state. To say I am heartbroken by this is an understatement. There is a whole different level of grief around losing a living child.
I am my husbands primary carer. He has Smart syndrome and Fahrs disease. (Presents like dementia) He suffered multiple Tia’s in the past and a few months before we lost our daughter to suicide, he had a stroke. He has severe hearing loss, vision issues, mobility and balance issues. He has extreme cognitive challenges. He can no longer safely navigate the world on his own. Caring for him is like caring for a 2 year old in an adult sized body. I am burnt out. I am so ‘bone deep’ tired. Both my husband and I have the NDIS. We would both likely, not still be breathing, without it.
I do not have family to help me. I have friends who I will not burden with my difficulties. I have struggled on and off over the years with suicidal ideation. Sometimes the emotional pain and struggle of living in this world is too much and I have tried multiple times to end my pain. Despite knowing the damage I would cause my remaining daughters.
The NDIS provides us with support workers who provide practical help like taking my husband to appointments. But they also provide me with emotional support. They are a consistent, familiar friendly face in an otherwise often challenging existence. Without them we would both be completely isolated.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 183
One of my husband’s support workers (at the suggestion of his exercise physiologist) has just begun doing Aqua therapy with him, using exercises provided by E.P. She also takes him to play cards with a group, once a week. There are so many things my husband has lost as his disability has progressed (it is degenerative). Most of the things that able-bodied people take for granted. He has not been allowed to drive for years. He is no longer allowed to use power tools. He used to love making things and using his chain saw. He is basically confined to painting watercolours and watching TV. Compared to many people we live a very quiet existence, spent mostly at home. Our world is already small, it would shrink considerably if access to the community was cut further as is the plan, the government has proposed.
I know we no longer contribute to society, the way we once did when we were both teachers. I know that there are thousands of people who need help and cannot access it. I have never taken the support we receive through the NDIS for granted. For most of my life I made the mistake of trying to ‘battle’ through my difficulties on my own. But this was also partly because the supports I did try to access were actually harmful (or non existent). The NDIS allows me to exist. I am not thriving, but I am existing. It allows me to care for my husband. Without me, he would have to have 24/7 support or move into a nursing home at the age of 60.
The government should be absolutely ashamed of the way they are framing the proposed changes to the NDIS. They have caused the anger in the community that is being directed at people with a disability who are presently using the scheme. The NDIS does need reform. Evicting 160000 participants off the scheme, who have been forced to pass rigorous assessments (often repeatedly) to prove their need for support, is cruel and inhumane. It does nothing to address the systemic bureaucratic waste inherent in the current system. It will NOT save money, it will just result in poorer quality of life, for people who need help.
My husband’s condition is degenerative. He currently has significant challenges and has been deteriorating at a rapid rate. Yet he is and will in the future, be required to constantly prove his need for support. This is a waste of time, money and resources. He is never going to get better. He is going to continue to get worse. There are so many ways the government could save thousands of dollars if they trained their staff to actually read the specialist reports that they themselves require.
I have multiple stories of wasted funding because of the way the scheme is set up. None of the proposed plan will address the issues and wasted $$$ with the current scheme. And people who are prevented from accessing support are not going to magically stop needing help because they have been refused access; it will just move the need to other areas, such as already overstretched hospitals, schools and burnt out carers.
I am truly disgusted with the current NDIS proposals and government rhetoric! They are not designed to tackle fraud, NDIA mismanagement or incompetence. They aim to strip vulnerable disabled people of choice and control over their lives and the right to live with dignity. Tightening the access criteria for the NDIS does nothing but prevent people who genuinely need help from accessing it. The government are targeting people with a disability instead of looking at the flawed system that they created. Limiting the choice of plan managers or support coordinators to a small number does not guarantee compliance of NDIA standards. Just like registration does not ensure a business has best practice.
It has taken me years to put together the right team of independent support workers. It will be devastating if we lose them because the government enforces registration. Two SWs do not look after any other participants and one only looks after two other participants. The cost of the current registration process is prohibitive. And after experiencing the transition to mandatory registration for teachers, all registration did was add an unnecessary layer of bureaucracy and move the handling of ‘problem’ teachers to an organisation. It added $$ cost and compliance obligations to already busy teachers; so a waste of teachers time, money and energy. It did not prevent dodgy teachers.