National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1682
Below is my deeper impacts and story but first is In short this proposed bill will directly impact
I will have to give up work- i.e. pay less tax.
I will have to present to hospital for social admissions far more regularly without my regular ongoing allied health supports.
Medicare will need to be funding a Mental Health Care Plan for every person in my family AND chronic disease management plans where applicable.
My ageing parents are unable to step in and help - due to my assistance I can still offer them some help/care but without my supports they too will suffer and have higher needs that will fall to the government.
I am unable to find an employer who can accommodate repeated absences for caring responsibilities, without my own business I am at a high risk of loosing my home rendering my two children and I homeless and heavily reliant on Centrelink and public housing.
when people lose the support that helps them regulate emotions and safely participate in the community, do police become the new behaviour support practitioners I am BEYOND FEARFUL when my sons have a meltdown down in public due to their lack of supports -Will they be harmed by people who cuff/detain/shoot first ?!?
If I cannot maintain my private housing because I am not able to be in the workforce to provide care, will there be a safety net in our swamped social housing programs?
If I and my children no longer have support to attend routine medical appointments, will those health issues escalate to be treated later and more expensively through public hospitals?
A brief overview of my story-
I have two ;now adult children on the NDIS. I spent the early years of their lives doing it without much support. Before the early autism funding Leaning heavily on Medicare; the public hospital system ; all of the charities (Anglicare;StVinnies; Salvos etc) for food support and emotional support and any organisation that could help as I felt like I was drowning. My youngest wasn’t toilet trained until he was 8 and could not communicate functionally until around the same time. I couldn’t work- as a single parent my entire income came from Centrelink. No child care centres would take them due to their needs.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1682
I had no extended family to help; my friends grew scarce - not understanding or having children themselves. When school came they got sent home again and again for their ‘behaviours’ My youngest was assaulted by a teacher at kindy- his arms bruised where fingers dug deep.. My eldest at 6 attempted to take his own life -yes at 6!
I had to pull them out of school and home school them just to help them regulate and to show them at least one person in the world understood and cared.
Our world grew smaller and smaller So when the NDIS came it was a literal lifeline for the three of us. With the support of the NDIS slow gains were made for my children and for the first time I felt what it was like to have time to just be their mum and love them rather than being their therapists; social connection; supporter; OT; physio; speech - the list goes on. My world got much harder in 2012 when I suffered an acquired brain injury.
Thankfully the ndis continued for my now older supported children.. to give me time to heal as much as I could.
Their world was at least steady with their support network of OT; Physio; Psychologist; Support workers; speech. They stumbled a little but were ok. After about 18months + of rehab through the public system came to an end and my impairments were now deemed permanent I went back to work. Each day that went by my ‘new’ disability ate away at who I had been.
How now I couldn’t support my children the way I used too
And how I too now desperately needed support myself.
And after a few short years of pushing myself without support I attempted to end my own life.
I just could t do it any more.
My physical, mental and emotional needs had changed drastically and no matter what I did I couldn’t make it work without help- and I didn’t want that stigma.
I didnt want to be a burden. I didn’t want to be disabled I didn’t want to have the Government to hold my life in its hands.
So I tried to end my life. I survived it. I reached out to the NDIS
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1682
I got supports - shower chairs; grab rails; OT’s; Physio; Psychology; support workers. It saved me. It saved my children loosing their mum. My children are now grown adults. They still live at home with me- with the supports of NDIS they have achieved a lot.
Studying at University; performing over seas; learning to tie their shoes at age 21! Too much to put in a short ish email.
They are now quite ‘functional’ - and will continue to be due to the scaffolding of a system that allows them to be. They both earn money pay tax study and give back to the community. Let me be clear This would NOT have happened without the supports of the NDIS. I am deeply concerned what their lives will look like without the level of supports they currently have.
Will they be re assed and ‘punished’ for the work out in and how far they’ve come- to be kicked off. To regress and loose so much we’ve worked for hard for? Right now My youngest son’s plan has been slashed so heavily we are awaiting a tribunal review. In just 6 short months waiting he has become withdrawn; lost his means of income; social connections and his skills that have been built are slowly slipping without the ongoing support that is needed for him. I know just in the short six months how heavily we are now back relying on his GP and the public health system.
I know how deep of an impact this is having on not just him but me as his primary carer.
I cannot fathom the fall out if his plan were to be permanently reduced or cut altogether. I’d be loosing the brilliant happy contributing human who has worked so darn hard to get where he was. For myself - I now with support- run my own business from home I contribute to society I pay tax I help other participants in a social and community participation based program I run. The proposed changes not only affect me personally the supports I use daily getting to my medical appointments etc but also if this bill goes through I loose My micro buisness My community connections My meaningful activity My ongoing skill development and maintenance. My identity and sense of purpose Plus all of the above for the participants I support AND for the support workers I employ and they employ.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1682