SUBMISSION FROM – 30/05/2026
WIFE, MUM, ADVOCATE
BUT NOT AN ECONOMIST OR AN ACCOUNTANT
How has it come to this? That the burden of fixing the NDIS rests, once again, on the shoulders of disabled people and their families. Frankly, you get paid to work this out, not me.
What do you expect will happen when you cast people off the NDIS, by pretending some people’s disabilities just don’t exist? Or what do you expect will happen when disabled people are not allowed to leave the house, go shopping, sit in a café with friends or just live a life? What is the NDIS for if not to give disabled people and their families the ability to live a regular life without fear of being taken advantage of and manipulated? Why would the Government expect a different outcome for roboNDIS than what happened with roboDEBT? Have they learnt nothing? Why isn’t the bigger picture being discussed around rights of people with disabilities, the type of society Australian’s want to live in and the total economic impact of the NDIS, not just the narrow view of the “budget”?
I want to live in a world where the most disadvantaged and vulnerable in our society are cared for with compassion, empathy and dignity. Not made to feel guilty, a burden or ostracised. I want a society where the disabled community are just part of the regular, everyday community, out and about. Why is it that abled bodied people feel so secure in judging disabled people just for existing in society? Do we look askance at the elderly when they are in the community? Maybe it’s because we can all imagine one day being old but a lifelong disability won’t happen to us? Well, disabilities don’t discriminate, they can and do happen to literally anyone.
So, what can we do to ensure that the NDIS provides services for those who need it? We need to maintain the following core principles that the NDIS was originally set up:
- Ensuring choice and control rests in the hands of disabled people and their informal supports.
- Ensuring those supports are reasonable and necessary
That’s it really. Why don’t we do that? Why isn’t the NDIS set up to appropriately provide this? What are the real issues? When politicians talk about an NDIS overspend, does it take into account the vibrant and expanded industry that has sprung up around the NDIS? What about the ability for disabled people to enter the workforce (not sheltered work(sweat)shops) and contribute income tax? What about all those independent support workers and new and improved providers who are earning and contributing, whilst also providing individualised support in all types of settings, whether 1:1, or groups; a breath of fresh air instead of the stale old institutionalised model where disabled people are forced into “bowling every Wednesday” whether they like it or not? That is choice and control.
The role of the NDIS should be to ensure those supports are reasonable and necessary as determined by THE EXPERTS, not bureaucrats or generic tick boxes, and that those supports are provided by reputable providers. It’s not rocket surgery!
To the numbers! :
When looking at the broad NDIS figures, sure the budget looks scary, but this is not the whole picture. You must look at the financial impact as a whole:
P a g e 1 | 3
-the ability of one or both parents being in the workforce, contributing to income tax, superannuation, etc
- the difference between being fully funded retirees or minimal aged pension
- ability to build up assets which can be used to fund housing
The difference the NDIS has made in our own family can literally be quantified as follows:
Let’s look at a real-life scenario. My own family (simplified, high level):
Husband – earning 100k+ at a full-time job Wife (me) – now earning 100k+ at a full-time job Son no. 1 – went to university, moved out of home, etc Son no. 2 – has severe and lifelong disabilities from birth, living at home, costing currently $250k per year on the NDIS
Let’s have a closer look at our son’s NDIS plan:
My son’s plan is actually quite simple and has been the same for the last 5 years. Ironically, his three-year plan as already been extended for another two years because it is managed so well (pat on my back for this one as we are self-managed). We have survived 2 x attempts to cut his funding based on his obvious requirement of 1:1 support, and 2 x audits. Unless and until he decides to move out of home, there should be no changes to his life or routine, so stop asking us to provide more and more evidence, proof and costly reports that nobody reads.
Our son’s plan for his multiple disabilities is made up of:
| Consumables | Daily Activities | Social Community and Civic Participation | CB Daily Activity | CB Relationships | Assistive technology |
|---|---|---|---|---|---|
| 1.01% | 50.39% | 43.02% | 2.37% | 1.74% | 1.47% |
The cost for his Social Community & Civic Participation funding, is 43% of his plan. This is where there is going to be a truly arbitrary cut to his plan. The irony is that the time he spends outside the house doesn’t actually cost the NDIS anything more than the time he spends at home. My husband and I paid for his car, we pay for his petrol, we pay for his activities. The only thing the NDIS pays for are the support workers when he is out and about, and they would be paying for that if he was at home anyway!
Compare this to his multiple disabilities; he has cerebral palsy, autism, ADHD, epilepsy, is mobile, non-verbal and incontinent. He is also intelligent, affectionate, funny and kind. Because of his disabilities, he is obsessive, anxious, aggressive, manic and can cause harm to himself and others. He was first in line when they were handing out disabilities, that’s for sure. But the supports we have in place, backed by appropriate behaviour support and his medical reports (and no, we should not have to provide additional reports every year, what a waste of NDIS funds!), has resulted in a workable and long-term plan. Please don’t stuff this up now!
Annual Financial Impact (Government Perspective)
NDIS
Component
| ($250k) |
|---|
| NDIS expenditure -$250,000 |
| Tax from spouse working $25,000 |
| Tax from support workers $45,000 |
| GST & indirect tax $15,000 |
| Actual yearly cost of NDIS -$165,000 |
This also doesn’t take into account the future savings of the disability aged pension of up to $60,000 per annum. Doesn’t look as scary now does it?
Now, more importantly, let’s look at the benefits on a broader societal level using our little microcosm family:
- The quality of life for us and our disabled son is greatly improved – I’m sorry I am not able to put a $ figure on this – priceless
- My husband and I are still married.
- Less stress, improved health outcomes for the entire family.
- I am able to spend my free time on volunteer and advocacy work (5 hours today to just research and prepare this submission).
My last concern remains, what the hell happens if the NDIS doesn’t get it right? Who’s going to fix it when you take away our ability to challenge the NDIS on an individual basis?
I could go on but I really need to go and fix myself and my son some lunch so we can keep fighting. Again, and again and again. It is exhausting.