Kirsty: [00:00:00] Hello and welcome to Enabled, the podcast where we talk about, normalise and celebrate disability and mental health. How are you feeling, Colin?
Colin: I'm feeling fine, but I think I can see the smoke coming out of your ears.
Kirsty: There's, look, this is what I think we're going to be calling the We Told You So episode.
Colin: Yeah, how long ago was that that you told us?
Kirsty: Cast your attention back to episode four. One of our more controversial episodes on account of the pitch of my voice is so high and it's just uncomfortable, but in any event, moving on from that, in that episode, we made a prediction. Based on the relentlessly negative media attention that was coming out linking autism to the unsustainability of the NDIS, that Bill Shorten was going to announce that he was going to be tightening the leash on funding for autism, effectively trying to oust as many autistic people from [00:01:00] the National Disability Insurance Scheme as possible.
So it's just been announced in the news that they are going to restrict funding for autism. And Bill is continuously saying that the NDIS “can't be the only lifeboat in the ocean.” So, my question is why? Why can't it be the only lifeboat in the ocean? Why do we need other services? I don't understand why.
Colin: Because other services would duplicate bureaucracy and setup and management and everything.
Kirsty: I think it's fairly well acknowledged in the community and social support industry that there is an enormous duplication of services, which just means a duplication of funding, duplication of effort.
It creates a more confusing landscape for consumers who are trying to find services to assist them. I don't think it does assist anybody to have that duplication, but that's effectively what they're saying [00:02:00] needs to happen now. I mean, surely centralization of something… helps.
Colin: If it's run properly, then yes, and that is the big point.
I often think that if they could sort out the wastage in the NDIS, then they would have the money to properly support these programs.
Kirsty: Because the wastage is not the money that is spent for people with autism. And again, the other thing that I really don't understand, and I feel kind of dumb saying this again, because I feel like surely I'm missing something.
Like, he's not saying this money doesn't need to be spent.
Colin: No.
Kirsty: He's saying we need services to do these things. I just don't want to be personally, out of my budget, I don't want my portfolio paying for it. So I'm going to Hail Mary pass that to somebody else.
Colin: And again, you take it out of the NDIS system. And create a whole other whole new agency. An agency that's going to soak up a heap more money in [00:03:00] establishment and running.
Kirsty: So whether the Commonwealth is paying for it or whether the states and territories are paying for it, do you know who's ultimately paying for it? The taxpayers. And it costs us the same, possibly more if they outsource it to somebody else to just start the whole process all over again.
Another thing that Bill Shorten is saying is that the NDIS is only intended to fund “profound disabilities.” To me all that says is they only want to be funding visible disabilities.
Colin: Automatically, I would think that, yes.
Kirsty: So you have to have a diagnosis of level 2 autism or above to be eligible for funding on the NDIS. What they're saying is that level 1 autism diagnoses have effectively disappeared, and that level 2 is the new level 1, basically.
So I have several problems with this. And my biggest one is that if they tighten this eligibility, if they say, no, we don't want to be funding all of these people with autism, if they're not reaching this level of disability that we think, or [00:04:00] functional impact that we think is required, it's going to disproportionately affect girls.
Autistic girls are the ones who are going to be penalised for this, because what we know is that Autism manifests differently in girls than it does in boys. The diagnostic criteria that they created for autism assessments way back in the day was created for the typical autistic boy in mind, not for the way that autism manifests itself in girls.
Girls, for example, typically more effectively mask their autism symptoms than boys do. They are much harder to diagnose because it's not manifested in the same ways that boys do. Masking is so detrimental for mental health. And girls are the ones who are so good at that, so they're the ones who are going to be missed, who are going to be kicked out of the system.
It's wildly discriminatory. But that's what's going to happen.
This is an opinion piece [00:05:00] from Elena Filipczyk. Apologies if I have not pronounced that name correctly. We will post a link to it. But what she has said is that she's autistic, but she can't afford to be autistic because it's so expensive to get all the therapies and the different things that you need to get.
She wants to apply to the NDIS, but she's made to feel like she's rorting the system because of all of the negative press that's coming out. And as she says, “so called high functioning autistic people like me aren't a priority for the NDIS, let alone broader society, because a lot of the time we can”, and this is in quotation marks, “keep it together.”
“Even though we're eight times more likely to be unemployed, a lot of the time we can just about survive cycles of constant burnout of work. Though we have a long list of co morbidities, we can make sure we only scream and cry in the privacy of our own homes. And though we have a disproportionately high risk of suicide and a life expectancy 20 to 36 years shorter than the general population, we can generally mask our deep debilitating unhappiness.”
So effectively, what I think Bill Shorten is saying is, if you can hide it, [00:06:00] I don't want to fund it. And guess who can hide it? Autistic girls and autistic women
Colin:. Okay. And you talk about the “profound disabilities”, my question for that sort of thing is who makes that line in the sand? And where, where is it?
Is it that level, or is it this level?
Kirsty: Well, apparently the line in the sand is how much does it cost the disability portfolio.
And all of the hullabaloo about how our autism rates are higher than the global average… But, as the Sydney Morning Herald reports, we're higher than the UK and the United States, but we're on par with Japan, where early intervention is common and has been proven to help children later in life.
So, like, calm down, for one. And secondly, as Elena Filipczyk says, that makes sense. It makes sense that autism diagnoses are higher in a country where the government helps autistic people to get the support that they need. The benefit outweighs the cost.
The other thing that I saw in the news today is that autism has [00:07:00] been added to the National Assessing Fitness to Drive Standards as a condition that should be assessed individually.
So autistic people might have to prove, on a regular basis, whether or not they're fit to drive, on the basis of their neurotype. I mean, that's a whole other issue, but like, there's stigma, there is a cost to these diagnoses, unfortunately. There's a cost to all these things.
Colin: There you go.
Kirsty: I’m mad.
Colin: And we would love to, like I said before, if, if you're somebody...
In government, in something that would love to talk to us, we would love to talk to you about it.
Kirsty: And please explain to me how this isn't disproportionately going to affect women, because I don't see how it's possible that it won't.
And why is nobody talking about the multiplier effect again? And if you don't know what that is, go back and listen to episode four because I can't even talk about it. It's just so frustrating.
Colin: The multiplier effect. Go and check it out.
Kirsty: Yeah. Episode four. We'll link to it. Anyway, that's our rant. That's what's going on in the news again for [00:08:00] disability and specifically for autism. It's not heading in the right direction.
Especially for women. So, you know, there's that intersection of disadvantage that happens to so many people.
Colin: Are you putting this out as a, like a special call to action? It's going to be out tomorrow. Like, I think you should,
Kirsty: Maybe. Maybe write your local member as well. Like it's a real problem and we should be, we should be doing better than this.
Colin: That's it. We can start a movement,
Kirsty: Let’s start a movement.
Alright, well look, thanks for listening, let us know what you think, if you agree or you disagree. If you disagree, talk to Colin, for at least the next week because I'm too mad about it. But anyway, we'll catch you next time.
Colin: Check you later. Bye.