All it takes is a quick search on Reddit to get a sense of what the National Disability Insurance Scheme (NDIS) can be like for people with a disability.
The truth of the matter is, the NDIS can sometimes do more harm than good, and as a support worker and social work student, I have witnessed this.
As a woman with Autism, I have not personally sought out the assistance of the NDIS. In fact, I probably wouldn’t be eligible. I’ll get to why that is, later. Even though I can’t speak about my own personal experience with the scheme, I still feel I can offer some insight. I have been an advocate in NDIS planning meetings, and I have been required to write letters of support for clients seeking extra funding. I have also done relatively extensive research on the scheme in my studies, so I like to think I’m pretty informed about what is supposedly intended to make the lives of people with disabilities easier.
But after all that, perhaps you are asking questions. You might be wondering why I am prepared to discuss the reasons the NDIS can be harmful. Perhaps you are surprised to hear that such a great idea has become such an underfunded, convoluted mess. Well, allow me to explain why, and outline the issues with the NDIS.
If you look at the NDIS act (2013), you will find that it emphasises the importance of individuals with a disability participating fully in society, economically and socially. It also proposes that it’s sole intention is to function on the idea of granting people with a disability “choice” and “control”. So essentially, it wants people with a disability to be included in society, and treated like valuable citizens. Woo! Now this is all well and good, but when you look beneath the facade of those kind and inclusive words, you’ll see that the scheme is pedalling an agenda fuelled by conservatism. These values include economic ‘growth’, jobs and small business. For this government too, it means that they like to cut down on spending so they can ‘save money’.
Now, you might call me out in saying “Oh but Hectic, you do realise that it was the labour party that came up with the NDIS, right?” Yes, that’s correct, but the NDIS first came into action around 2013, (and it took its sweet time in reaching all parts of Australia). The liberal government also came into power in the same year, and its now 2021. You can imagine how much the NDIS has ‘evolved’ in that time right?
Unsurprisingly, since its birth, NDIS funding has been slashed significantly. In fact only this year has a new taskforce been established, designed specifically for cutting funding to the NDIS. Now if that isn’t a fine nugget of satirical comedy, I don’t know what is. Why is this so hilarious? Because in the 2019 national budget, it was reported that there was a 1.6 billion dollar underspend within the NDIS. Shows how much they value the lives of people with a disability.
Further to this, when you look at how frugal the liberal government is with anything apart from coal and destroying the environment, you can only imagine how much spending they cut to services that don’t appease their agenda. I’m talking about services such as the NDIS, and any kind of social service. They cut the expenses to save money, even though the services being requested by the client could potentially benefit the person in perhaps, having a job!? Maybe even opening up their own small business! Did you know that the founder of Pokemon, Satoshi Tajiri is on the Autism spectrum? He’s a millionaire now!
So despite the la-di-da-boo-wah about jobs and economic growth, by cutting funding for people, the government are inadvertently compromising their own intentions.
Good one Scomo.
Now if you didn’t like my bias-fuelled political rant, then you can move on to the broken down points I’ve established that outline the issues with the NDIS:
- The CEO Martin Hoffman has about as much experience with disability as Abraham Lincoln with a Dell XPS 13. In other words, he has no qualification in any relevant field, meaning he would most likely be unable to bring empathy and insight to his role. He has a finance and economics degree. Relevant.This is contrary to other CEO’s for disability organisations, such as Laurie Leigh of the National Disability Service (NDS), who has a background in mental health nursing, health services and social psychology. So basically, Martin Hoffman probably isn’t qualified to be making business decisions that influence the quality of service that participants will receive. Another more qualified CEO is the newly appointed CEO of Amaze, Jim Mullan. According to the Amaze website he has experience with youth and community work and working with people on the Autism spectrum. He may not be an expert, but he still puts Abraham Lincoln’s computer abilities to shame!
2. In order to get the best/most funding, you need to amplify your deficits and basically just explain how shit it is to have a disability. Strengths won’t help you, because that will just give the NDIS a reason to give you less funding. This is ironic given that the NDIA insist that they use a “strengths-based approach” to understanding what participants need. It’s as if they think people with disabilities are either totally hopeless individuals or perfectly capable in every way. They don’t seem to understand that there are nuances to our existence.
3. NDIS goals are not always goals that have been determined by the participants. Yes, fortunately some participants do get to make their own decisions. However, I have worked with many participants with cognitive disabilities who don’t even attend their own NDIS plan meetings. It is usually their parents or carers who make the decisions, in quite a few cases. By the way, I despise the assertion that people need decision makers because they are deemed unable to make ‘important decisions’. What do you deem important? What drove you to that conclusion? Whether the person needs a decision maker or not, I think it’s worth asking those questions. Another thing, what is important to you might be different to what is important to the participant.
4. The support plan meetings feel like a year 12 English exam. Your abilities and eligibility for funding are measured by how well you can answer queries and concerns under the pressured timeframe of about 30 minutes to an hour in a bland office space. You are basically being interrogated into proving how debilitating your disability is. Otherwise it will all be done over the phone, or these days, teams or zoom.Too bad if you have processing challenges. Maybe they will give you more funding for that, or maybe they won’t even notice that as apart of your disability, and just view it as you being unable to adequately justify why you should be eligible for more support.
5. Your plan could be reviewed at any time, at the discretion of the NDIA. This means you will have very little stability and certainty regarding how long your services and supports will last. In other words, you could go from having 12 hours of support per week to two without a reasonable explanation.
6. More isn’t always better. If a person needs 24hr support, giving them a thousand different support workers to work with them during the week could be traumatic and overwhelming. Do you have a thousand friends that you see every week? No. You don’t even need to answer that unless you’re a rambunctious 2008 Cory Worthington.
7. As a person with Autism, you will be ranked in levels 1, 2 or 3. Level 2 is considered to mean ‘requiring substantial support’ and level 3 is “requiring very substantial support’. This means that if you so much as miss the mark for level 2, you can say bye bye to your NDIS funding. You’d think that having a diagnosis in general would be enough to make you eligible for funding. This is not the case. Apparently, diagnoses are ranked in terms of how ‘significant’ they are. As someone who was diagnosed with Asperger’s Syndrome (before that label was scrapped), I would technically come under the category of level 1, meaning no funding for me. That is, unless I exacerbate every one of my ‘afflictions’.
8. The NDIA’s favourite two words are “choice” and “control” in reference to people with a disability. Yet, the requests of people with a disability are more often than not, rejected on the basis that what they are asking for is ‘too expensive’ or impractical. Do they even realise they are literally NOT spending enough money on the scheme?! *Ehem* *1.6 Billion Dollar underspend* I sigh in frustration. Sometimes if a person understands the NDIS lingo, and has a giant support network to back them, they might be more likely to get what they need. So much for choice! This can be difficult for people who do not have a background in healthcare, disability, welfare etc. or from a low socioeconomic group. So much for “control”! When a person’s funding is slashed, they are forced to fight for themselves, and waste the time they could be spending living their lives fulfillingly. They waste this time, arguing with people who claim to ‘understand’ their challenges, without knowing anything about their personal challenges at all.
If the participants of the NDIS are supposed to have choice and control, then explain this contradictory section of the website to me?
So, the NDIS decide what is reasonable and necessary for the person and “makes decisions”. Right.
9. NDIS is largely inaccessible to ethnically/culturally diverse families and individuals. Recently in fact, the ABC did a brief report on a Sudanese family from Adelaide. This family had applied for the NDIS multiple times before finally being approved. This child had been diagnosed with non-verbal Autism, and still couldn’t get funding after multiple application attempts. Interestingly, half the population in Australia are either from overseas or had parents born overseas (ABC News, 2021), so it was expected that at least 20% of that population would be accessing the NDIS (ABC News, 2021). However, this is not the case. In fact, only 9.5% have access to the NDIS (ABC News, 2021).
Some of these points may not seem super alarming to you, but trust me, when you live with a disability and breathe the atmosphere of the disability sector, it’s really easy to see the flaws in the system. More concerningly, I imagine there are many neurotypical individuals in the industry who honestly feel they are doing right by people with disability, when in actual fact, they’re not.
I hope this blog, despite its heavy biases, urges you to at least do your own research, and to think critically
Here are some links I used:
k https://www.abc.net.au/news/2021-08-16/ndis-too-complex-for-people-from-diverse/13498444 – WATCH THIS VIDEO UPLOADED 16/8/21
That’s my rant for the day.