Submission - NDIS legislation 2026

I am wanting to comment on the proposed changes to the NDIS.

My name is , and my date of birth is

I am 47 years old.

I have been an NDIS participant since about 2017 when it rolled out in my area. My primary disability is Psychosocial Disability which I have from Schizoaffective Disorder (Bipolar type) which started around 2006, and Delusional Disorder which I had for 3 years from 2015-18. I have a secondary disability of Autism Level 2, which I got a late diagnosis of in about 2019.

I live in a regional area of Victoria.

I am concerned about the changes to the NDIS because they will affect me and my friends.

Firstly, I believe that the problems with the NDIS costs can be traced back to the Gillard ALP government and the lack of proper debate on the NDIS Act in 2013. I read all the speeches and only three mentioned costs. Paul Fletcher (Liberal) mentioned the updated 2012 cost estimate by the Australian Government Actuary (made for Treasury) of $22 billion in 2018-19. Ed Husic (Labor but not in Cabinet) refuted Paul Fletcher and stated the costs would be about $15 billion a year, which referred to the earlier Productivity Commission estimate in 2011 which was not in future dollars and had not been able to include the 2012 Fair Work SCHADS decision. Andrew Wilkie stated the costs should be whatever was necessary. Nobody else mentioned costs at all.

The Bills Digest for the NDIS Act used the 2011 Productivity Commission estimate of around $14 billion, not the updated 2012 AGA estimate of $22 billion.

I do not know where the Bills Digest authors get their information from, but I presume it’s from the politicians and their staff. As this was a Labor bill I expect they got the information from Cabinet.

This means one of three options - Treasury did not give the Treasurer Wayne Swan the AGA update to the NDIS costs, or Wayne Swan did not pass the AGA update on to Cabinet, or the Cabinet deliberately did not give the Bills Digest authors the AGA update.

I have not been able to find out which.

Why I bringing this up is that I feel like Labor has been blaming NDIS participants for the costs of the NDIS, but it is actually Labor’s fault for not debating the costs of the NDIS properly in 2013, and not giving the Bills Digest authors the 2012 AGA update on the costs.

It is not our fault as participants that the costs are so much higher than the 2011 Productivity Commission estimate of $13.6 billion.

We have no control over how the NDIS runs. The government, the Board and CEO of the NDIS, make all the decisions not us.

I think it is unusual to roll out a program which is generous and then roll it back to being a lot less generous.

I also think this is an organisational change problem, and the government is not managing it well. They are blaming participants when we have no say in the rules of the NDIS, they are failing to take responsibility for their own actions, and they are not doing anything to support NDIS participants and families try to adjust to any changes.

I do agree the NDIS costs need to be sustainable in the long term. The Productivity Commission in 2011 stated that disability support services (not including health or the DSP) cost $7.1 billion a year. Now at roughly $50 billion a year with the NDIS, costs have multiples by 7, in around 15 years. This is a much higher rate of growth than most other government programs, but it also reflects the low level of spending in the past that hadn’t met the needs of severely or profoundly disabled people.

The main problem with both the Productivity Commission and AGA cost estimates, is they both gross underestimated the number of participants.

There was a Senate Estimates (Budget) hearing on NDIS costs in May 2012, and the Liberals did question the Productivity Commission and the AGA on the issue with the 2011 report not being in future dollars, the Fair Work SCHADS decision adding costs, and the lack of certainty with participant numbers, even asking if they modelled the costs for higher numbers of participants such as 700,000 participants. The answer was no. Penny Wong shut down this line of questioning by saying the Liberals didn’t support the NDIS.

Now we have a lot of problems with the costs.

Logically I agree with the government that the only ways of really containing the NDIS costs is controlling or reducing the number of participants, or reducing the amount of average funding participants get, or some combination of both.

This is logical.

But my heart says that this is going to affect people’s lives. Everyone that doesn’t access the NDIS or who is booted out of the NDIS will miss out on supports that would make their lives better. Everyone who has their funding reduced will miss out on doing things that would have made their lives better.

The Budget will be sustainable.

But a lot of people’s lives will get worse.

One thing I really wanted to bring up was that as an NDIS participant the plans and funding are already so inconsistent.

My own funding has ranged from about $25,000 a year to $105,000 a year. When I was the least functional in 2017-18 I had $40,000 a year which was way too low, but I did not have the capacity to fight for more funding then.

Some people are given generous amounts of funding, or like me they are able to go to Tribunal and fight for more generous funding, and other people don’t get nearly enough funding.

I am very worried that the changes to the NDIS could exacerbate already unfair and inconsistent funding decisions.

I am very worried it could lead to much poorer outcomes for some people, or cause harm or even deaths in some cases.

I feel concerned that we don’t know enough about how the new plan funding system is going to work.

As somebody with Schizoaffective Disorder I am personally really anxious about the cuts to social participation the government wants to make.

I rely on my social participation funding to help me do things like go to a bigger town to shop at Aldi, pick up bargains on Facebook marketplace, go to events like markets or occasionally concerts.

My social life is fairly narrow if I take out the NDIS part of it. I see my Dad and his partner and her family at least once a week usually. I have a couple of friends that I see. And I go to an inclusive choir. I also am part of an advocacy group for people with psychosocial disability, but we mainly meet online as we live in different places. Online forums are also a way for me to keep in touch with people socially while I’m at home alone.

I really do not want to lose my social participation funding.

People with psychotic mental health conditions on average spend 20 or less hours in social activities a week, compared to average people who spend more than 60 hours in social activities a week (this includes work).

Research shows that social activity is necessary for people’s mental health, so forcing people with severe or profound Psychosocial Disability to socialise less and be more isolated, is likely to end up making our health worse.

• I also think it is unfair to target people who have disabilities that mean they require help with social situations, while prioritising people who have physical disabilities who need help with self care etc.

• I understand that it’s logical. Lack of self care is more likely to cause harm than lack of social participation. But again my heart says that this is going to make some peoples lives worse just because of the type of disability they have, and the type of supports they need.

• I cannot work out how the government can safely cut social participation from people with severe or profound intellectual disability who go to social groups most days of the week.

• Overall the NDIS has been very positive for me. By the time the NDIS rolled out in my area repeated psychotic episodes had been reducing my functioning capacity, and having Delusional Disorder 24/7 for 3 years straight from 2013-18 had made me much more in need of support.