National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission
We are a peer group of people and carers of people with disability. Some in our group work in the disability sector as well as having disabilities and/or being a carer. We are aged between 18 and 80 and of different backgrounds and sexes.
We do not support the proposed bill. We very much understand that the NDIS needs to change. We live it every day. We see the overspend on some and the under spend on others. We see the bureaucracy and the people profiting on a system based on paperwork and confusion. We see our plan money being spent on endless reports and people behind the scenes. We see the most vulnerable people with disability getting the least help as they are not supported to advocate for their needs. Those with access to advocacy support, or who are better able to advocate for themselves, getting majority of help.
We also see the great things about the NDIS. We see a 50-year-old peer member finally gain full independence and confidence now he can interact with the community with the help of a support worker. Their parent is now able to enjoy retirement knowing their adult child is supported. We see parents in our group able to work and pay tax because they have some physical and mental load taken by support workers. We see their teenager having the chance to get involved in teenage activities without mum following them around helping with behaviour, communication and self care. We see a member able to walk without fear of falls due to equipment, who has now joined a gym with support from a support worker. We see a member with intellectual disability who is able to save up his hours and travel out of town. Before the NDIS he could not leave Whyalla. Through the NDIS people have been able to gain confidence, work on goals and aim for dreams like others do. Cutting back on this life changing support will simply cut back on life!
We know the first thing you plan to cut is access to the community! Section 34A — Minister can cut your plan (% off whole categories) This is cutting access to life, this is our connection to friends, family, healthcare appointments, shopping, volunteering, sport, entertainment, information and making those connections for informal support that is so vital. We simply ask that you put in the bill that you can’t make changes without hearing from us! That we must be consulted and that changes are co designed and planned with us, so we don’t have our lives outside our homes cut in half with no hope. I’m sure you plan to be kind but who will be in future government and how could they use this rule how it is written? Please while you safeguard our countries finances please safeguard our access to community and other supports.
A support worker who attends our meetings had this to say; “I will give a perspective that perhaps doesn’t get thought of as much and that pertains to Support Workers rights to feel safe and go home being able to cope as well. This also pertains to client safety and support. As someone who has had to tell staff they had a duty of care to check on a client who I believed had ended his life and then as the person who had to go and identify, see what had taken place and have seen and been a part of the aftermath of clients action, which sadly for us, was successful. I am very concerned that taking social avenues and supports away from clients will harm not only clients but also Support Workers and Management. It is us that live with the panic and day to day dread if a door isn’t answered and we have to go and do a welfare check. It is us that has to literally clean up. It is us left with a feeling of failure and stress and the unknowing of if we could have done better or if this new system emerges, the anger of not having been able to Support a client effectively with what they may have needed.”
Section 34(1)(aa) — directly arising only.
Short points here, this puts added strain on families, clients ,support workers, emergency services will, in my opinion, be called out to homes more - placing more pressure on mental health wards and not to state the obvious, but also tying up the time of nurses, doctors, pyschologists, psychiatrists and families then missing time at work, placing further strain due to not paying tax… the list goes on.”
As a peer group we all agree that our disabilities are a part of us as a whole person! We cannot separate outcomes neatly into boxes tied to a single diagnosis. Every aspect of our lives influences the others, including our disabilities. Physical conditions can often make it hard to get in to the community or can make you feel “othered” these often lead to psychosocial issues like social anxiety or depression. Studies have shown the impact COVID had on people who lost social contact for even a relatively short time. So how can we overlook the experience of people with disability, who often face lifelong barriers to community participation and may also have additional c-morbidities to manage? They may not have the financial means or the support to get additional diagnoses but these will affect them and will make it harder to deal with their underlying conditions. When looking at how to support them, we need to look at their whole life not one aspect.
Another barrier to diagnosis is finding the experts who can see diagnoses separately. We live in Whyalla, a regional city nearly 6 hours from Adelaide. We have limited specialists, with long waiting lists and costs. We have limited allied health supports too. It’s very hard to find a professional who will understand enough about each diagnosis to separate it in to parts and work out what affects what. One peer member looked for years to find a psychologist who understood Down syndrome enough to be able to see past it to give a fully understood diagnosis of Down syndrome, Autism and ADHD. After submitting an 80 page report they were told by the NDIA “we will not accept this, we need three separate functional capacity reports to see how each area affects the child” the family paid $3000, travelled 6 hours and stayed in Adelaide for a week. They didn’t want extra supports, down syndrome already gave them max support, all they wanted was for their child to be recognised and understood as a whole person, not just a person with down syndrome. Functional capacity tests are designed to test the whole function of a person not to break them down into separate parts. The test would have costs thousands and wasted over 3 working weeks of a regional Occupational Therapists (OT) working time. The family choose not to go ahead as it was a waste of government resources when nothing would be added to the plan. This is not affirming. We are more than boxes. This is not money saving but money wasting. There is now not even an option of an OT as he left to work elsewhere and no replacement has been found. Stop wasting resources on putting people in boxes.
Section 50A — auto-renewal, unspent funds gone.
We live in Whyalla, remote South Australia. Waiting lists are long, professionals are hard to come by. It can take 9 to 12 months to see a physiotherapist; some wait for years. It’s a long process to get things in place. This rule means that by the time we have gathered all the paperwork, made all the measurements and finally got around to ordering much needed equipment. The plan runs out and poof. No money left to buy what you had on order. Custom made parts can take months or even years to arrive. We can’t have a system that makes such a firm timeline. People will not have wheelchairs, people will be stuck at home or even in bed due to life changing equipment not coming in the right timeline. Also allow people to save money in one plan and use it in the next. Yes we agree it can’t sit there forever but allow a system where you can update the NDIA on unspent funds, “yes I have x amount left, there is a wheelchair on order, its due to come in 6 weeks, I will contact you if it arrives or the timeline changes” or “I am
Section 40A / 30(1A) — suspension & revocation.
Yes, we understand plans may have to be suspended if you can’t contact someone. All we want here is clear guidelines put in the bill. Such as “you may suspend a plan after reasonable attempts to contact have been made. These reasonable attempts must include demonstrating that you have tried each provided contact method four times over the course of one month, making contact at least once per week. People have life events that are really tough and sometimes you won’t be answering your phone or emails. This could be major surgery, cancer treatment, the death of a loved one, an accident, a mental health issue, a pregnancy or child birth, not being able to pay phone and/or internet bill, domestic violence, a change in support workers or housing, moving house, a burnt out carer, a broken phone. This list goes on. These things happen to everyone but are more likely to happen to someone who has already been made vulnerable by their circumstances. This change won’t affect people who are well able to advocate for themselves but those who are in really tough situations already.
The peer group knows of a man in NSW who was found dead after several weeks. A letter saying his plan had ended was in his mailbox with a mountain of other letters piled up. His fridge was empty. His sister who lived interstate was told he may have died when support workers didn’t turn up to take him shopping because his plan was cancelled. Don’t do this. Be reasonable and outline what “reasonable contact” is.
Section 9B — new eligibility test from 2028.
One peer member with cerebral palsy took 10 years to finally be accepted on the NDIS. It has been life changing. But now we look around the room and wonder who will be on the NDIS in the future? We try to calm fears by saying the government plans to have the NDS not “be the only lifeboat in the ocean” but what has been put in place other than this great big lifeboat. You terrify us with numbers like sending 300,000 people off of the life boat but there are no ships out there—we can just see sharks.
What do we want to see instead? We need to see Co-designed plans on what will be there for those who are no longer eligible. We need information on who might be eligible or how eligibility might be decided to take the fear of the unknown away. We just want to be included and informed which is what we fight for every day! We want the bill to have safeguards to protect our rights so no matter who is running the government in the future we can just hope they are reasonable but that it remains in the law that they must be reasonable and that those laws are co-designed by the people who will be affected! Please, please, please listen to us. Disability is the largest minority but also the one that anyone can become part of at any time in their lives. Please safeguard the NDIS as you, or your loved ones may be affected in the future too!