I am wriƟng to you as I am concerned about both how the government is communicaƟng about the changes they have proposed for the NDIS and the impact that those changes will have on Australians, most of whom are struggling.
To understand where I am coming from you should know a liƩle about our family and why we are so concerned about these changes. Our family of three consists of two people who have been diagnosed with auƟsm spectrum disorder (ASD) and we also have several relaƟves in our extended family with auƟsm, one of whom also has a co-occurring intellectual disability.
My son (level 3) was diagnosed with auƟsm in 2023, and I was diagnosed (level 2) not long aŌer that. Both of those diagnoses helped us to all understand a lot more about ourselves and why many circumstances that others seem to manage without issue were not so simple for us. I have since discovered that I most likely have hypermobile Ehlers-Danlos Syndrome, a condiƟon that oŌen co-occurs with auƟsm, which has been the cause of many injuries (osteo arthriƟs and athleƟc pulbulgia) and pain throughout my life. You should also know that my son started refusing to engage with school and eventually we were forced to make the difficult decision to transiƟon to homeschool two years ago when his issues with school were too significant to conƟnue.
I have a number of issues which I will outline below, these are not in any parƟcular order.
- CommunicaƟons from the government are driving anƟ-disability senƟment At the very beginning of this saga when changes were first proposed to ‘secure the future of the NDIS’ there was a lot of discussion about how much the program costs and that there were some fraudulent acƟviƟes taking place.
The way the government has communicated to the public has implied that the fraud taking place is an act of the parƟcipants defrauding the system when we know that the fraud is predominately coming from dodgy providers and disabled individuals being taken advantage of. This has led to a significant upswell in anƟ-disability commentary and anger from the community. Comment threads across the internet are liƩered with people saying that disabled people are misusing the funds, that they are rorƟng the system and that the program should be limited to only those with severe disabiliƟes i.e. creaƟng a disƟncƟon between the worthy disabled (presumably those with visible disabiliƟes and/or people to feel compassion towards) and the unworthy disabled (mostly those with auƟsm or less profound needs).
Stop generaƟng anger in the public domain at the expense of my family and the disabled community.
- The fact that NDIS generates economic acƟvity The second part of the above, and an important enough point on its own, is that the communicaƟon has been wholly about cost and not a whit of discussion about the benefits. Several major studies and economic models have demonstrated that the NaƟonal Disability Insurance Scheme (NDIS) acts as a strong economic driver. It sƟmulates GDP, creates jobs, and improves both community and workforce parƟcipaƟon. If there is a percepƟon about the NDIS that it costs too much then the responsibility of telling the above story and correcƟng the record lies with the government of the day i.e. yourself and your colleagues. This narraƟve has, in no small part, been driven by the Labor Party and that is a failing on you.
NDIS supports give back to the community more than they take. Investments in making people’s lives beƩer are good investments.
- Misunderstanding of how auƟsm levels work The level system associated with ASD is not related to ‘how disabled’ a person is but rather how much addiƟonal support they might need. The idea that mild auƟsm (presumably level 1) is something that can be easily overcome or doesn’t require ongoing support/assistance is fundamentally untrue. Even without communicaƟon deficits, Level 1 adults and children struggle with sensory processing, employment discriminaƟon, and chronic burnout. AuƟsm is quite oŌen co-occurring with many issues like (not an exhausƟve list) hypermobility, POTS, PMOS, dyscalculia and dysgraphia. Even an individual diagnosed at Level 1 can need quite a lot of addiƟonal help once one or more of these issues are layered on top - many of which are irrelevant to the diagnosis and eligibility for the NDIS.
AuƟsm is lifelong and complex - it cannot be reduced to a 1, 2 or 3.
- Thriving Kids as an alternaƟve to NDIS When proposing that you would ‘divert’ 1000s of families off the NDIS, inferring that it will predominately by those with ASD, one of the new supports is a program that will be delivered predominately by schools. Schools that have been wholly unable to properly support students with diverse needs, which is why the largest proporƟon of homeschool families are neurodivergent. It seems to be a fundamentally flawed idea to deliver support through mainstream schools for a community that is most likely not to aƩend mainstream schools.
The way that my family uses most of our NDIS funding, (and we use only a small porƟon of what we are budgeted/allowed) is to help my son engage with his community via social groups targeted towards auƟsƟc kids. Many auƟsƟc children are demand-avoidant and find more value in targeted social groups than therapies.
Perhaps, rather than build an enƟre system around keeping kids in schools that are unsuited to neurodivergent folks, more money could be put towards providers that deliver the services that we need to support our families. Perhaps via some kind of federal government iniƟaƟve where we get funding to allocate to services in our area. Sounds a lot like the NDIS, doesn’t it?
You can’t help auƟsƟc kids by pouring money into a space they don’t use.
- Fraud in the NDIS not being tackled, people being kicked off instead Coming back around to economics an ABC arƟcle indicates that your own government audits esƟmate that 6-10% of total NDIS funding (roughly $2.8 billion to $4.6 billion annually) is lost to inflated invoices, organized crime, and ineligible payments. The fact that the vast majority of NDIS fraud and misuse is provider-led (i.e. not parƟcipant misuse) but the ‘soluƟon’ to the cost of the NDIS is to kick people off it seems to be unnecessarily cruel. You are punishing the very people who are being taken advantage of or abused in an effort to make the economics stack up. Referring back to point 2 (The fact that NDIS generates economic acƟvity) it seems to me that your party has chosen the easy path to solving this problem at the expense of the very people that the NDIS was setup to help.
Stop punishing those who the system was conceived to support.
- Government spending is about prioriƟes; you can afford what you decide is important I understand that budgets are difficult things to balance and that there is a lot of poliƟcal power/Ɵme spent to ensure that the best outcomes are delivered but at the end of the day what the government can afford is what it choses to spend money on. It is wholly untrue that the NDIS is unaffordable when, at its heart, it was designed to liŌ families and individuals struggling to cope with lifelong disabiliƟes out of the darkness and into the light of day. If we can afford to spend money on nuclear submarines and massive subsidies to top income earners, then we can afford the NDIS. If you need money to balance the budget don’t go aŌer the most vulnerable in society, go aŌer businesses and mulƟ-naƟonal corporaƟons who avoid tax, mining companies who benefit from the minerals that belong to all Australians and the ultra-rich in the top 1% of our society who quite frankly benefit no-one but themselves.
PrioriƟse budgets towards things that make peoples lives beƩer, not worse.