In March 2021, WWDA’s Project Officer, Vanamali Hermans spoke out against NDIS Independent Assessments on C3R morning breakfast radio.
You can listen to the interview at: https://www.3cr.org.au/thursday-breakfast/episode-202103110700/adam-thompsons-born-birrarangga-film-festival-united-workers
Priya Kunjan 0:00
Now we’re going to go to an interview with Mali Hermans, who’s a Wiradjuri organizer, writer and community worker, as well as Project Officer at Women with Disabilities Australia who lives on Ngunnawal and Ngambri land, and joins us to discuss the government’s plan to introduce independent assessments in the National Disability Insurance Scheme act, and why these proposed changes are so concerning. So hi, Mali. Thanks so much for joining us today.
Mali Hermans 0:25
Thanks for having me.
Priya Kunjan 0:28
So for people that are unfamiliar with the NDIS, maybe we can just provide a bit of broad background around that. So what role do assessments play in the process of accessing the NDIS and reviewing one’s plan?
Mali Hermans 0:42
Yeah, of course. So, basically, in order to be eligible for the NDIS, you need to meet certain access requirements. And you need to have – or need to provide – documentation that assesses your disability. So the types of documents that you can provide, can be GP reports, for instance, but usually, it’s a report from or multiple reports from treating specialists such as physios, neurologists, psychologists, you know, the types of people as a disabled person, you tend to have longer standing relationships with. And I would say, that even at this point in the scheme, this is already a massive barrier for people such as Aboriginal and Torres Strait Islander people who can find it a lot harder to create, or have those relationships of trust with medical professionals, people who can’t afford training specialists, like, I see a lot of training specialists, it’s like $150 out of my pocket every time. So already, there’s a barrier there. And then, when you are found eligible for the schme, you have what’s called an NDIS plan. And that plan regularly gets reviewed, usually annually. And during this big planning review process. This is again, where you have lots of assessment reports from your service providers. So they are people like physiotherapists, occupational therapists, psychologists, etc. And these assessments, paint a picture for the NDIS and that is how they, I guess, determine how your disability is tracking and determine the level of funding that they’re willing to give you based on those assessments.
Priya Kunjan 2:27
Yeah, absolutely. And I mean, with, with the sort of limited familiarity that I have with how the NDIS works, even if you have the the best possible relationships with the service providers that you engage with, that is still not necessarily a guarantee that you’re going to get the supports that you need, right?
Mali Hermans 2:45
Absolutely, absolutely. Yeah. Like, I think like, one of the big problems with the scheme, is that a lot of the times, even if your disability is not changing, it’s going to stay the same for the rest of your life, if not deteriorate, the whole purpose of the NDIS is to try and increase people’s capacity. So they need less support, which isn’t realistic for the majority of disabled people. Yeah.
Priya Kunjan 3:16
I mean, it’s it’s very, it’s a very neoliberal model.
Mali Hermans 3:19
Priya Kunjan 3:20
And I mean, you know, in that vein, what are some of the changes that government is planning to bring in with these independent assessments?
Mali Hermans 3:28
Yes, so basically, what happened at the beginning of 2019, the government and the NDIA introduced the first stage of the independent assessment pilot. And so this ran in I think it was nine regions in New South Wales with around 500 participants. And the second half of the pilot was set to take place, first half of 2020. But then, obviously COVID hit, that wasn’t possible. And so a report was released on this. It’s like, commonly known as the Tune Review, it’s the 2019 review of the National Disability Insurance Scheme. And so it, it kind of talked about the basis for introducing independent assessments. Because the government and the agency, I guess, were concerned that there weren’t consistent and fair decisions being made in who could access the NDIS or not. But the disability community has just a plethora of concerns with these changes. Because quite frankly, the changes aren’t being made in consultation with disability community advocates, it’s not being made in consultation with disabled people’s organisations and other peak bodies. And I think like, broadly, our community bottom line is really scared that this is a cost cutting measure. And this is going to fundamentally alter the scheme and how it operates. So there are lots of different concerns. So first and foremost, independent assessments require the use of standardized assessment tools. So essentially what will happen is, the government will contract providers who will then carry out the assessments. And they’ll use standardized tools, which just absolutely do not account for everybody’s different presentations of disability as well as experiences of race of class of gender. Like we know that standardized assessments are usually based on some crap idea of who the universal disabled body is it’s usually a white wealthy man, for instance, and they’re never – or very rarely – culturally appropriate. So WWDA, who I work for, Women with Disabilities, Australia, we’ve asked our members, you know, what are your concerns with independent assessments? We’ve had people say that, you know, “I’m someone with multiple issues. I don’t fit into a standard textbook, tick box, I have a history of falling through the gaps, and have been traumatized. So, you know, I’m very fearful of standardized, one size fits all, blanket assessments.” One of the other big concerns is limitations for people with what is commonly called complex disabilities, so people with invisible disabilities, or psychosocial disabilities. And in particular, if you take a gender lens, or if you take a racial lens, you look at the way that people are often misdiagnosed. So for instance, women with autism is a big one. The majority of people with autism who are a part of the scheme are men, and that is because women with autism, usually, are not diagnosed in the same way because assessment tools just are horribly gendered and doesn’t account for women’s and gender diverse people’s experiences of autism. I think there’s another concern too, that for people who have multiple disabilities, so you might have a physical disability, as well as a psychosocial disability. So that is like the phrasing for like, different mental illnesses or trauma disorders. An independent assessor will often pick one or the other to focus on, which in reality isn’t how disability works. You know, lots of disabled people have multiple disabilities, and they compound and they interact with each other. So I think, yeah, like one of the the huge concerns is that in a very short assessment with somebody you don’t know, it’s never going to provide the whole picture of your disability. And it’s kind of like, going back to previous models of disability care, where disabled people are dehumanized, and you’re forced to prove and show how dysfunctional you are. And speaking on behalf of WWDA as well, taking that gender lens, we are especially concerned about the impact that this will have on women with disabilities and gender diverse folks who have histories of trauma. So it’s, it’s not trauma informed. And it is not safe to expect women and gender diverse folks who have complex histories of trauma – and a lot of the time that trauma has come as a result of ableism or violence because of people’s disabilities, whether that be institutions, in hospitals, etc. – to then have to retell their story to someone that they don’t know or that they don’t trust. It’s, yeah, it’s a completely re-traumatizing experience for these people. And the Tune Review did recommend that there be protections in place for people who may be affected by this. So making sure that for instance, people have a choice of you know, who their assessor is maybe they can choose if the assessor it’s a woman or not. But at the heart that doesn’t change the fact that disabled people often have a really fucked up time, honestly, finding treating specialists that we can trust and we know will not perpetrate harmful ideas, and ableist ideas about a disabilities, and the idea that we can just have that assessment again, with someone we don’t know, have to re-tell our disabilities in some yes or no tickbox way. It’s just laughable. It’s really laughable. I think it’s… yeah.
Priya Kunjan 9:43
Yeah, absolutely. And I mean, I think you can’t underscore enough of the fact that these independent assessments you know, are with- are with strangers, people that you’re not familiar with, and the idea of “choice” there is laughable as well. You know, you get to- you get to choose potentially whether you see a man or a woman, or you know, somebody, that- somebody who fits into a category that you’d might technically be comfortable with, but at the same time doesn’t account for the relationships that you build with service providers over time.
Mali Hermans 10:13
Priya Kunjan 10:13
And I think, yeah, it also seems to stem from a fundamental distrust of disabled people to know about their own conditions and be able to, through relationships with service providers, convey that.
Mali Hermans 10:29
Absolutely. We actually- so again, like I said, WWDA has been strongly listening to our members and what they’ve had to say, and I think one member said something along the lines of “you know, I’ve got a really complex history. Even after 30 years, my GP still defers to me or my ideas about what’s happening inside my body.” Because, you know, that disabled woman is the expert on what is happening inside their body. And so I think this particular person was really scared. But you know, what makes the NDIS think that any independent assessor can comprehend what challenges their disabilities pose, when even the doctors at the top of this field that are treating this person still defer to them, rather than guessing and judging? You know, based on… whatever. Yeah.
Priya Kunjan 11:20
Yeah, absolutely. So you mentioned that there was a pilot program that’s being trialed. so far. Have you seen any of the concerns that we’ve raised just now arise across the course of the pilot?
Mali Hermans 11:33
Absolutely, absolutely. So there have been multiple disabled people who are NDIS participants who have come forward and said the process didn’t work for them. There was one man, Aaron Carpeter- Carpenter, sorry. He took part in the assessment pilot. And I believe he has autism. And so he told The Guardian, that essentially, the independent assessment was just a whole bunch of yes or no questions with very little context, and he was assessed by a physiotherapist, which is just like, you know, beyond the scope of this physiotherapist’s training within allied health care within broader disability politics, or whatever. And I think, yeah, the word that Aaron used was it was “dehumanizing”. There have been multiple other people as well, who have said, you know, it was really distressing, that it falls in line with the concerns that I just talked about, that um… Yeah, people weren’t believed, there wasn’t a nuanced approach to people’s different presentations of disabilities, and that it WAS a traumatizing experience. And the fact that disabled people have spoken up about independent assessment, and have said: “This was distressing. This was dehumanizing. This was re-traumatizing.” And that still hasn’t been listened to, I think, speaks very loudly to the fact that the introduction of an independent assessments are not being held in good faith, or not meaningfully engaging with the concerns of disabled people whose concerns should be at the forefront, because, you know, the NDIS is, is our scheme. And unfortunately, yeah, that’s not the case right now.
Priya Kunjan 13:33
Yeah, absolutely. So in terms of addressing some of these really serious concerns, what are Women with Disabilities Australia, and other members of the disabled community, other peak bodies as well asking about the- the independent assessments, what are they asking from representatives? Sorry, elected representatives, rather?
Mali Hermans 13:58
Yep. So I think, overwhelmingly, disabled people’s organizations and disability advocates are asking the government to just bloody listen to disabled people and engage in meaningful co-design. So the Tune Review recommended that there be different protections in place and that, you know, consultation happen with disabled people over the introduction of independent assessments, but that is not happening. Independent assessments are supposed to be introduced by the middle of this year, when you know, the full pilot didn’t even get to run because of the pandemic. And I think a lot of people are concerned that this is just a cost saving measure. So yeah, I think the community is asking for the government to engage in co-design of disabled people and listen to our concerns. And I would say do a lot of community advocates and a lot of DPOs aren’t in favor of independent assessments altogether. So a lot of us are calling for the process to be scrapped, because it doesn’t, and it never will, capture our experiences of disability properly in the way that disabled people deserve to be listened to. In particular, from WWDA’s perspective, as well, as I said, was very concerned about the, I guess, lack of a gender lens that the introduction of independent assessments has- the fact that it will be very traumatizing for a lot of women with disabilities. And so we’re asking on the- we’re asking the NDIA, sorry, to act to develop an NDIS gender strategy, in consultation with women and girls with disabilities, as well as obviously their representative organizations such as WWDA, and Women with Disabilities ACT, Women with Disabilities Victoria, etc. And we’ve been asking for that strategy since the introduction of the NDIS, and it still hasn’t happened. So I think that’s another big ask. You know, and if, if that strategy were already in place, I think it would, you know, speak to the fact that independent assessments are not okay, and aren’t trauma-informed… But there’s no benchmark for trauma informed care right now. So yeah.
Priya Kunjan 16:19
Yeah, absolutely. And I mean, I think the very least that elected representatives can do in the wake of the Disability Royal Commission, is really take these concerns seriously, because, you know, after- after everything, you know, the incredibly traumatic and heartbreaking, you know, testimonies that people gave during the commission, you know, if anybody was listening, now is the time to step up and make some of those changes in a way that actually allows people with disabilities to live self-determined lives.
Mali Hermans 16:55
Absolutely. Yep, and Priya, that’s just the perfect word, self-determination. The whole- the whole purpose of the NDIS was about choice and control. And unfortunately, right now, it does not see disabled people have choice or control over the way that they’re being assessed and the way that we’re being treated.
Priya Kunjan 17:17
Yeah, I mean, it’s so often, right, in- in these kinds of schemes where choice and control just becomes a code word for individualized responsibility and punishments. And it’s, it’s so unacceptable. So before we wrap up, where can people find out more about these issues and also support the pushback against these proposed changes? Because I’m aware that a meeting is being organized for elected representatives?
Mali Hermans 17:44
Yes. So today, at 12PM there is a Zoom briefing with different disability advocates, from a lot of the DPOs, so DPOs are disabled people’s organizations. So people from People with Disability Australia, the Australian Federation of Disability Organizations, and Every Australian Counts, are holding this briefing, hoping that MPs and senators will tune in and listen to disabled people’s concerns. So they can’t say that they haven’t had the opportunity to listen to us, essentially. So yeah, this video conference is happening at 12PM today. It’s all over Every Australian Counts’ social media. The public is welcome to tune in as well, so if you want to know more straight from the mouth of disabled people about how these changes are going to affect us, please tune in. And there’s still opportunity as well to call your MPs and your senators office offices, and ask them to tune in and really, really, you know, give them that final push and say that they need to listen to disabled people. And I think more generally, you can follow on social media organizations like Women with Disabilities, Australia, like First Peoples Disability Network, who are really speaking up on behalf of multiply marginalized disabled people. And in particular talking about, you know, the effects that indepent assessments would have for disabled people who already have been traumatized by deeply ableist systems within our society.
Priya Kunjan 19:18
Yeah, definitely. And considering that it is just about 8:16 in Narrm right now, people can head to @EveryAustralianCounts on Twitter – I think that might be the easiest way to find some of those links to- to send those last minute emails and calls to your members, your local federal member and to senators as well to really push them to attend this meeting at 12PM. So thank you so much for taking the time to speak with me Mali, I really appreciate it.
Mali Hermans 19:47
Thank you so much for having me, Priya, and for, yeah, amplifying and platforming disabled people’s voices.
Transcribed by https://otter.ai