SUBMISSION TO THE COMMUNITY AFFAIRS LEGISLATION COMMITTEE
NATIONAL DISABILITY INSURANCE SCHEME AMENDMENT (SECURING THE NDIS FOR
FUTURE GENERATIONS) BILL 2026
ALISON BARBER
NDIS PARTICIPANT
Email: Phone:
DATE: 27/5/2026
My name is Alison Barber. I am a 61 year old mother of 3 young adult children and am about to celebrate my 39th wedding anniversary with my husband. In addition to my life experience of having been a carer for my sons who have lived with disability for the past 25 years, I personally acquired a C2 incomplete spinal cord injury in late 2019. I am now a permanent power wheelchair user, navigating life as a C2 incomplete tetraplegic. Although I am making this submission on my own behalf, I am a Board Member for Queenslanders with Disability Network, a State Carer Ambassador for Carer’s Queensland, and am actively involved in numerous codesign projects and advocacy work.
As a self managed participant looking after my own complex NDIS plan, in addition to undertaking the role of nominee for my two sons’ complex NDIS plans, I feel that I am well experienced to present an informed, multifaceted viewpoint in relation to the impact of the various changes proposed in the Bill, in its current format. Whilst I acknowledge the government’s concerns regarding the high cost of the National Disability Insurance Scheme, I would like to point out that this scheme was promoted to all Australians as an insurance scheme that would be available for any one of us, or our family members, should we find ourselves or our loved ones faced with the reality of living with disability in our futures.
There are many, many aspects of the proposed Bill which concern me greatly, ranging from the inordinate power that is given to current or future Ministers to cut funding without appeal (s.34A), to the tougher unscheduled reassessment rules and the loss of review rights to the automated decisions and algorithms with no individual appeal. For the sake of making this submission as brief as possible however, and to highlight the severe reality of its potential impact, I am going to focus on the proposed 50% cut to social and community participation funding from October 2026.
The Minister states repeatedly that his goal is to return the NDIS to its original intent of being a scheme for people with severe and permanent disabilities. His proposal of reducing the social and community participation budget of ALL plans (from October 2026) is going to seriously impact not only the lives of the people he considers less worthy to receive assistance, but also will drastically affect the daily lives of people like myself who require one on one 24 hour assistance with every aspect of daily life.
Imagine spending your days starting with assistance to empty bowel contents from a colostomy bag that is attached to you and that you require support to empty as your hands and arms simply cannot complete the task independently. You then require assistance to get out of bed, and assistance to transfer to a bathroom and be positioned on a toilet (after you have had assistance to remove your clothing as, again, your arms and hands no longer can complete the task independently). You have been blessed to retain the control and use of your bladder, so this is one task you fight fiercely for the right to be able to complete independently. Following a few minutes of privacy, you then again require assistance to redress and transfer, a process that requires a hoist or other transfer device, to your wheelchair, where you are assisted to position footplates, and reposition your body into a somewhat supported position to commence your morning routine. You then require assistance to have bowel medications dissolved and mixed in water, and morning medications, which consist of an ever changing concoction of drugs that are meant to keep each system of your body functioning in a way you never dreamt of requiring assistance for. And this is just the start of your day. Every aspect of every part of your day continues in much the same way, as the reality is your body no longer functions in the way it once did, and in the way that I hope you are never in the situation to have to live with.
I currently am funded for four hours per day of social and community participation (28 hours per week). If this budget is reduced by 50%, as is proposed, I ask the question of what is to become of me during the 14 hours per week that I am left without support. What if I need to access the bathroom during this time? What if my colostomy bag suddenly fills and there is no one with me to assist in its emptying. Believe me, when I speak from experience, that a burst colostomy bag spilling bowel contents all over your body is an experience I would not wish on any one of you. What if my body goes into an episode of Autonomic Dysreflexia, a risk which is directly related to my disability with a high level spinal cord injury. This condition is potentially life threatening and is frequently triggered by the brain detecting a threat below the level of injury, which causes my blood pressure to rise rapidly to a point where I could have a stroke or, worse case, die. Common triggers for this condition involve the bladder or bowel. I am not trying to be dramatic, but point out that this is a serious possibility for participants with high level
spinal cord injuries being left without support for any period of time. What price of cost savings do you put on the value of these lives?
My goal is to point out that participants who require 24/7 support, require this many hours of support in whichever form you label it. If you are to remove 50% of these participants’ social and community participation budgets, have you considered that you will need to increase their assistance with daily living budgets in order to ensure their safety? There are many, many differing disabilities which require full time support in order to ensure, not only their safety, but their basic human rights and dignity.
Participant budgets for those living in SIL homes will need to be adjusted, as will budgets for participants with various other forms of private 24/7 models of support. What do you propose is going to become of participants with severe behavioural needs requiring robust accommodation when they suddenly are without support for half of whatever their allocated time had been to access the community each week?
I could continue, and provide many, many more illustrations, however I believe I have made my point. This is just one of the changes that on face value, to people who do not live within the realities of life with a disability, could seem a reasonable way to save money. After all, aren’t we proposing to reduce this budget, which is simply used for people to go to coffee shops, have haircuts and, during which, support workers have often been seen scrolling on their phones? I can see where the drastic realities and possibilities that I have pointed out above could be overlooked.
I will momentarily digress by pointing out that there are many other ways to address budget issues rather than by penalising some of the most vulnerable members in our society. We could potentially raise the tax on the hugely profitable gas export companies. We could choose to possess one less nuclear powered submarine to protect us from a war that may or may not reach our shores. I am sure there are many other options that could be considered by the very educated personnel who choose to spend their work lives balancing the budget of our nation. The proposal of cutting billions of dollars in funding and removing hundreds of thousands of vulnerable people from disability supports before any alternative options are in place appears to me to be a Draconian measure.
Terrifyingly, if this Bill is to be passed in its current form, we are giving the Minister (or any future Minister) the power to change any form of support budgets from any group of participants and by any percentage they see fit WITHOUT THE SAFEGUARD OF RETURNING TO
PARLIAMENT TO ENSURE THE PROTECTION OF DUE PARLIAMENTARY PROCESS! Are
you sure that this is something that you wish to support? I sincerely hope that you don’t, and on my behalf, in addition to all people in Australia who rely on this scheme, our National Disability Insurance Scheme, that you will VOTE AGAINST THIS BILL and not undo the brilliant progress that has been made in disability rights in Australia since the scheme’s inception.