Submission 222
Senate inquiry: National Disability Insurance Scheme Amendments (Securing the NDIS for Future Generations) Bill 2026
Submission
Friday 22nd May 2026
I have three sons, two have Down syndrome and intellectual delay, the third has a permanent brain injury.
The National Disability Insurance scheme has provided them with regular therapy and assistance with daily living support and community access, splints, orthotics and others. So let’s address the Proposed changes to the NDIS
“The government will introduce significant changes to social and community participation funding to reduce spending in this area and change how supports are delivered.” I think the key message here is not about “how supports will be delivered” but “reduce spending“
We have had to fight every step of the way to ensure our boys receive what is fundamentally their human right. Including:
- Accessibility: People with disability are entitled to equal access to public spaces, transportation, education, technology, and information.
- Right to Participation: People with disability have the right to participate in civil, political, cultural, and social life on an equal basis with others. Reduce Spending by: taking away human rights
Where a planner sees fit to allocate 3 hours a week community access to a 13 year old, knowing at least one hour will be taken up with travel.
- Require tighter assessment of reasonable and necessary supports for both new and existing participants (to be progressively implemented from 1 February 2027).
“Tighter Assessment“ as if it isn’t hard enough to get necessary funding, this Bill will make it more difficult.
Planners who are trained to understand the needs of a person living with Down syndrome by comparing them with a child with Autism? (lived experience) Assessors who are rude and intimidating, who relish bullying tactics, is this the training they
Submission 222
undergo? It’s seems unbelievable that apart from one assessor, they’re all trained this way. I have personally experienced this and been chastised by planners, saying “ I won’t fund that“ and having three children with disabilities was “your choice,”, And checking in? Simply more reason to harass, bully and intimidate the parent/carer. As early as last week I received another unexpected NDIS phone call, the tone was harsh with long intimidating pauses as if I was on trial. My three sons, need support to engage in the community safely. Yes this will be drastically reduced if this Bill succeeds. They will be stripped of their right to lead inclusive lives that mirror same age peers. What kind of society chooses who gets to live a normal life? And who is liable when this new Bill fails to meet existing needs of those living with disabilities. More cases to front the Tribunal, more tax payers paying the NDIS private litigation lawyers?
“In the 2024–25 financial year, the National Disability Insurance Agency (NDIA) spent $60.7 million on private law firms to defend its decisions at the Administrative Review Tribunal (ART). This marked a significant ~60% increase from the $37 million spent in the previous year.” The Guardian “Tribunal rulings favoring participants in about 50% to over 70% of contested disputes that progress to an external review.” The Guardian
I have taken the scheme to Tribunal to fight for their rights following a mandatory internal review where, incidentally another child’s name was copied and pasted into my son’s review, by another trained assessor. I have no faith in the I- CAN assessment, questions do not take in to consideration the dynamics of the home or the logistic and how far away supports are. NDIA asked me two questions before Tribunal
- What does a good day look like?
- What does a bad day look like? I answered them in a ten page written statement, what life with disabilities looks like. Sadly NDIS Assessor’s have no idea of the impacts of living with a disability, after all they couldn’t possibly be trained to understand the complex needs of each individual that needs disability support. Support Needs Assessment: sound so compassionate, yet: I was told by an NDIA agent that my son could be “ kicked off“ the scheme if I didn’t provide evidence of his ongoing support needs and I had 24 hrs to gather reports. It wasn’t a review, I had no prior warning and I cried myself to sleep that night. The said child has permanent brain damage and several associated disabilities that he will never recover from or lead an independent life without support, he also has a life threatening blood disorder.
Submission 222
As a primary Carer I really don’t need the additional stress from the “trained assessor”.
- Support coordination: A similar approach is expected to apply for support coordination, where participants will choose support coordinators from a government-vetted panel, from July 2028.
I will no longer be permitted to engage with a support co ordinator who understands the dynamics of living with three people who have significant disabilities. Who understands the family dynamics, their individual characteristics, their life threatening health risks. The type of services that work best for them and where to find them and overall reliable support when engaging with service providers. Because “a simple approach” is expected Again who is liable, when this watered down approach harms my children? What happened to a client’s right to choose? The Disability Judgement movement argue that true inclusion requires a transformation of how society distributes resources and defines value. “, Not what society takes away.
Perhaps if the Bill took into consideration Disability human rights and no doubt the increase in Tribunal hearings, it may “reduce spending” which will be upwards of the 60 million dollars it has allegedly spent in one year going to Tribunal , not to mention possible liability costs due to death/ injury from negligence.