National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2456
A parent’s perspective on NDIS reform.
I am writing this submission as a parent of an autistic/ADHD 10-year-old on a self- managed plan and someone employed in education support in Victorian schools.
My daughter was diagnosed autistic between 18 months and 2 years old. At the time, she had gross motor/coordination concerns, was non-verbal and had obvious sensory concerns.
After obtaining a diagnosis, we started our NDIS journey through the clinic that helped in getting our diagnosis, starting with weekly sessions of speech therapy. At this point, my daughter could not communicate needs or wants or seek connection through communication. This resulted in screaming, emotional breakdowns and physical outbursts such as hitting and biting because she could not verbally communicate and experienced frustration because of this. This continued until after she was three years old.
Fast forward seven years, and she is now a highly articulate, very expressive, nearly 11- year-old. She can communicate with peers and adults, expressing feelings/desires and dislikes and holding conversations more effectively; however, she continues to benefit from the social support and education she has received and continues to receive from therapists.
Without the NDIS, this could never have happened, as I am a single parent who receives next to nothing in support from my ex-partner. For one, I could never afford the supports she has had so far and being a single parent, pretty much organising my children’s lives on my own, I would never have been able to afford the money and time to educate myself to be able to support a neurodivergent child and then enact those supports from scratch.
For myself, when I started this journey, I knew nothing of autism. Being recently separated, I was completely overwhelmed by what my future journey might look like and what it might look like for her. Through the NDIS, I have watched my daughter grow into someone who has a greater chance of a future because of what her therapy supports have given her. Speech therapists have given her voice, OTs have given her a better understanding of her body/how to regulate herself better, and improvements in gross and fine motor skills. Art therapists/counsellors have given her opportunities for connection with both people and situations, and a safer, better way to explore the nuances of life that can be hard for autistics to grasp. The NDIS has given me the choice and control to choose therapists who are a good fit for us as a family, to refuse things that can cause trauma, such as ABA-based therapies, and to be able to choose to leave if it doesn’t work, which will lead to our future success. This could never happen if I were forced to accept a program like Thriving Kids for my daughter
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2456
The NDIS has also given me many opportunities to grow as an informal support by including parent education as part of my daughter’s plan and by being able to learn alongside my daughter in therapy. Slowly, my participation in sessions with my daughter has become less as she moves from needing ground-level intervention to working towards life skills with therapists.
This is evidence of her moving from ‘intervention’ to needing higher level skills to use to have a better chance of being able to live in the most basic way that most non disabled people take for granted, things as easy as reading a transport timetable, knowing what it means and how to complete a trip using all the steps successfully. It connects to the purpose of the NDIS to help people with disabilities have a more accessible life, but also represents that while there is growth and needs may change, these supports may and most likely will always be necessary in some form.
This is also why minimising plan reviews, keeping plans the same and forcing participants to seek a change of circumstances to get an adjustment is ignorant, ableist and removes the participants’ voice. It’s ignorant to assume the needs of a person will always stay the same, and by doing so, we are basically assigning them a label of non- importance as we are saying there will never be any improvement and as such, support will never need to change, essentially putting them into a box not recognising them as a human.
It takes away their chance to talk about their successes as well as their future needs. It also forces people to have to fight unnecessarily to justify why, as a human, they deserve to have support to enable them to live at least a basic life, to live a life that is a fundamental human right. Most people who are affected by disability in some form do not have the capacity to continually fight for the basic rights that everyone else takes for granted.
Likewise, changes to social and community participation and to the use of support workers also fall under this. Without assistance with this, a majority of participants and participant families will be left feeling isolated, leading to increased mental burden and emotional deterioration.
As it is for a lot of families, even with access to this, every day we are still making a choice. Can we make this accessible for our people so that it can be successful, or do we make them miss out because, as informal supports, we don’t have the skills or resources to make it so? What do we sacrifice in ourselves and the rest of our family as informal supports to give our person with disability a chance to experience things that nondisabled people take for granted?
For me, as a parent, to experience any social outing involves things such as
- What tools/sensory items will she need to stay regulated and successful?
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2456
- What time do I need to allow for entry and exit to make sure there’s no overwhelm or burnout for either of us?
- Pre-empting potential problems, so that I can have possible solutions before they happen
- What do I need to do for my older nondisabled daughter to make sure she still gets enough attention, as she also deserves?
- Coordinating with my elderly mother to support either or both daughters so that I can have something for myself, because my ex-husband is non-existent in their lives, and I cannot even consider him as another informal support.
- If we are successful in getting out, staying hyper vigilant to be able to jump in if something happens.
Being able to access appropriate programs in social and community services, and the use of support workers, gives participants a chance to grow and enjoy life with a chance at independence, and gives families someone else who is qualified to help them do this. Most of all, it can give carers a chance to breathe, which can mean the difference between parents staying together, a mother continuing to provide successful informal support, and other family members receiving equal attention and care.
Investing in supporting and upskilling participants and families benefits the workforce. There is a growing number of people entering disability/care/education professions because they have lived experience and have developed skills that benefit these fields. I myself chose education support because I wanted to hopefully be able to help students with what I have and am still learning. This can provide skilled workers in high-demand fields with experience that courses and degrees simply can’t give for the starting worker. As often stated in this debate, for every dollar spent, approximately $2.25 is returned. You strip back to generic supports and push intervention into schools a lot of this will be lost.
I am in Victoria where we have a decent support system for students with disabilities. However, even with this, teachers are already stretched, and not every school has the resources to obtain the information needed to apply for the funding needed to support students appropriately, which increases the risk of burnout. Add to that Victorian education staff are the lowest paid in the country, and you want to add to that burden by adding more to the environment.
Let’s be realistic, you’re shifting money from a federal budget to a state budget, and there are no guarantees that all states will apply that funding the same way, if they even do in the first place. I see kids who could benefit from more specialised settings and support in mainstream schools, because there is no other option. Having NDIS supports has made these settings more successful and gives education staff more information to better understand and educate these students. It’s the middle of term two and I’m already seeing a lot of exhausted education staff. We simply just don’t have
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2456
the capacity to start from scratch. NDIS supports/allied health support means we don’t have to.
Also consider the fact that no two schools are the same or equal. I’m lucky to have been in schools that actually care about inclusion for disabled students, but this is not the case in all schools. Even in a supportive school, my daughter has a better chance at success because of the information I give them, the information from therapists, not because she is a funded student with a decent amount of funding and a decent amount of aide time.
Even with all this, if I have a work excursion, I keep my daughter home with my mother because if I’m farther away, I can’t leave to pick her up and I have no one else to do it. If I can’t make an excursion for her as a parent helper, it involves a lengthy discussion with her teacher, attempting a backup plan to stay at school, which usually ends up with her staying home again because if something goes wrong, I’m not available to fix things, because quite simply even with best intentions, the education system is not well enough equipped to provide support at the level needed.
Most education programs are aimed at higher volume delivery and in many places support and inclusion are an afterthought, but again, ‘we will try pushing more disability intervention supports to school responsibility’.
While the NDIS needs to be sustainable, it needs to be investigated higher up the food chain, charities/corporations with executive using their own properties for supported independent living (and this has been documented), not the parents working tirelessly to make sure their kid has a chance to experience any part of life that many people take for granted.
Parents/Carers are already tired. These NDIS reforms are only going to increase spending and community problems elsewhere.
It will result in
- More mental health problems in families and individuals, including more family breakdowns and possibly a higher suicide rate amongst the disability community.
- More parents having to choose between a chance to work and possibly have a life, or needing to be a stay-at-home carer because they have no other choice, leading to a higher amount of those on welfare. Again, leading to more mental health problems and isolation.
- Overburdened school systems and education staff because they’re suddenly dealing with more students without intervention and foundational supports and they are not equipped to but expected to.
- More isolation for individuals and families alike.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2456
And most of all, a big step backwards in inclusion and the value of human life. We’re putting a monetary value on what is essentially someone’s right to exist with dignity and identity, not recognising this as the fundamental right of someone as a human being. This may set a dangerous precedent for how society views disability and the worth of someone who lives, breathes and bleeds into just a number to be slashed or cut because they aren’t disabled enough and as such aren’t worth as much. This will be the highest cost of all.