NDIS Supports webinar transcript
MARG RENWICK: Good morning, everyone, and welcome to the National Disability Insurance Scheme Supports Webinar, the NDIS Supports Webinar.
My name is Marg Renwick, and I work for the Australian Government. I’m here and part of my role is to support the changes to the NDIS. I’m also a person with a disability, an NDIS participant, and a parent of an NDIS participant, so the NDIS is in lots of parts of my life.
To begin today, I’d like to acknowledge Aboriginal and Torres Strait Islander peoples throughout Australia and their continuing connection to land, water, culture and community. We pay our respects to Elders both past and present. Today we’re coming to you from Ngunnawal country here in Canberra.
I’d also like to acknowledge people with disability, their families, carers and supporters as we all work together to improve the NDIS.
Today we have Auslan interpreters Dalia and Nat with us as well as some live captioners. The live captioning should be on the screen just below us. Thanks to our captioners and interpreters for helping us deliver this inclusive event.
So today we’re going to be discussing some recent changes to the NDIS. We’re going to share some information about a consultation process that’s currently underway for the NDIS supports lists and we’re going to be taking questions and listening to your feedback about how those recent changes are working or not working for you. But first I want to talk about all the changes for participants and how they all fit together.
So you’ll see a slide on the screen come up that in 2023 the findings from an independent NDIS review and the Disability Royal Commission were given to government and the government agreed to make some changes to the legislation. Then last year the Australian Parliament made changes to the NDIS Act. These changes set the direction for how the NDIS is going to improve. The legislation changes were based on the issues and changes and recommendations that came out of the NDIS Review.
Now, to put these changes into action, some new NDIS rules are being made, and some existing rules are being updated. Other rules are going to stay the same.
Now, the NDIS rules kind of set out how the Act works in practice. Rules provide the detail for how we operate the NDIS. Some of the changes to rules affect NDIS plans, like the way the funds can be used. Today we’re going to be discussing the NDIS Supports rules. These rules show participants what they can and cannot buy with their NDIS plans and funds. Now, the NDIA, the National Disability Insurance Agency, implement the rules and of course, all of it sort of ends up with how the participants experience and use the NDIS.
But before we get into that rules discussion, I’d like to introduce these panel members who are with us here today. On my left at the end here is Sarah Hawke, who is leading the changes to the NDIS. Her branch is going to join the newly formed Department of Health, Disability and Ageing in the Australian Government. Sarah has been involved with the NDIS from the very beginning. She has a law degree; she has a wealth of experience when it comes to the NDIS and the rules. Welcome, Sarah.
SARAH HAWKE: Thanks, Marg. It’s great to be here.
MARG: And with me here is Alex Rosenthal. Alex is with us here from the National Disability Insurance Agency, which is the agency responsible for implementing the NDIS. Alex has worked in the agency for 10 years in leadership and policy roles, and communications and engagement. Welcome, Alex.
ALEX ROSENTHAL: Thanks for having me, Marg.
MARG: And finally, we’re very lucky to have with us today two people from Disability Representative Organisations, Megan Spindler-Smith, from People With Disability Australia, and Darryl Steff, from Down Syndrome Australia.
Megan is the Deputy CEO at People With Disability Australia. They have over two decades of experience driving inclusion and change initiative across many sectors. Megan is a proud disabled person and is passionate about intersectionality, accessibility and integrated inclusion.
And Darryl has led Down Syndrome Australia since 2023 but has been involved with the community for 10 years. He has a wealth of experience in advocacy and leadership and is also a parent of a child with a disability. So welcome, Megan and Darryl.
MEGAN SPINDLERSMITH: Thank you.
DARRYL STEFF: Thank you.
MARG: So, in our webinar today the panel is going to discuss and answer as many of your questions as we can. We’re going to use a tool called Slido where you can post a question or a comment online. If you see a question you’d like answered, please vote for it. We’re going to aim for the panel to discuss the most popular questions and think about how it relates to the NDIS supports lists and we really want to get into a bit of a discussion about what’s working and what’s not working.
Now, I know that there’s a lot of conversation about lots of things about the NDIS, but today we’re really going to try to focus on NDIS supports, so if you’ve got questions that are out of scope of that, we’ll take note of those questions, but we’re going to really focus on answering questions around the support lists today.
We’ve also got a team of people online, both from the department that I work in as well as the agency. These people are going to try to answer as many questions online as we can as well on the Slido tool.
So just a reminder when you’re posting your question or comment, please refrain from using any personal information, like people’s names or where they work. We really want to protect your privacy, but we want to hear your experiences as well.
So, to start us off, I’m going to invite Sarah to give us a little bit of an overview of how we got here. Sarah.
SARAH: Thank you, Marg. So, I think we’ll start right where many of you know that in October last year, to support the commencement of the changes to the NDIS Act, the Government put in place a transitional rule about NDIS supports. So I’ll share a little bit more information about how we got there and many of you will know that we didn’t have the opportunity to take the time that we needed to do the deeper consultation that we wanted to and should undertake and that’s what we are keen to do now is to listen and to learn from participants about their experience with the NDIS support lists.
So, the rule makes it clear what types of supports and services the NDIS participants can spend their funds on. It created three types of support lists: a list that are NDIS supports, which are really broad categories of NDIS supports that are not intended to be exhaustive; a list of specific supports that are not NDIS supports; and a replacement support list. The NDIS supports rule was created as part of the changes to the Act and it is intended to specifically clarify, or generally clarify, what participants can spend their funds on.
So we have had meetings and discussions and listened to lots of engagement with ministers and across with my colleague Alex in the NDIS about how people have experienced the NDIS support lists and feedback about what is and what isn’t working for them. On the slides you will see some areas of things that we have heard feedback about so far and we are keen to review the NDIS support rules to make improvements and work closely with the agency about how to support participants to exercise choice and control within the broad categories of supports.
Your feedback today will provide us with lots more information that will help us make decisions and provide advice to government about changes to the NDIS support rules. We want to take the time to listen.
We know there’s still confusion and concern about how the lists are working and we’re listening so that we can work out what needs to be improved to give participants the confidence to exercise choice and control in using their plans and making decisions about the supports that they need. That’s why it’s important that we hear from all of you and others as part of our consultation process that is underway at the moment on the DSS Engage website. I might leave it there, Marg, and throw back to you.
MARG: Thanks, Sarah. So since October, NDIS participants have been working with these lists. Alex, you are part of the agency that is working with participants on the implementation of the rule and I’m sure you’ve heard lots of feedback from participants. It would be really great if you could share some of that feedback with us now.
ALEX: Yes, I’m happy to. Thank you, Marg. I think from the last kind of 10 years of the scheme, more now, we’ve heard pretty consistently that participants wanted to understand more clearly what was allowed and what was not allowed and particularly people who self-manage their own funding as a way to kind of make flexibility easier. So in some ways the lists have helped. It’s easier to know what can I buy and answering that question is a little bit easier, but we do also know that there’s been unintended consequences with the lists.
I think, as Sarah said, there has been confusion and anxiety. The lists were published on 2 October and then came into force on 3 October. That’s not ideal for anybody. That wasn’t ideal for the agency, that wasn’t ideal for participants. And so while the lists I think in concept are a good idea, there’s still what we’re hearing from participants and wonderful advocates like Megan and Darryl is where is it less black and white and where do we need to think about particular definitions or specific items that might actually be appropriate for some people, but not appropriate for all.
So some of the areas that I’m sure will come up today, but that we already know kind of fall into that category. We need to do more work on defining what is appropriate short-term accommodation, particularly for people who self‑manage. So the agency knows that, is doing some more work on that one.
We used a term that was ‘evidence-based therapy’ and so we need to do a bit more work about what does that mean? And working with our colleagues in the department through the establishment of the Evidence Advisory Committee really to be clear about what is evidence-based therapy.
We also know, which I’m sure we’re going to talk about today, there’s lots of kind of grey interpretation around what is an everyday item and what is a household item, versus what is a disability specific item. So that’s something that has caused that kind of confusion and questions and kind of captures the work that is already ongoing in the agency to provide more clarity and advice on those topics.
As Sarah said, there are three lists. There’s the What is an NDIS support – what is in, what is out – What is not an NDIS support, but there is also a Replacement supports list where you can request to have supports replaced. And that was something that we designed following feedback. So we designed that in collaboration with the community in the window of consultation we did have on the rule, but we probably need to look at that again as part of these consultations and make sure we’ve got the right items, make sure that the process for replacement supports is easy. We’re seeing it used and we’re seeing a lot of those requests be approved and so there’s probably some lessons there for us.
The other things I’ll just mention off the bat, just like there has been some confusion for participants, I also think it’s fair to say there’s been some confusion for our staff. And so making sure that we’re training our staff to have these conversations as part of planning conversations is really important and something we’re continuing to work on. And we’ve started to talk directly to participants over the last couple of months who might be making errors in their claims. And so we’re starting to pick up the phone and have conversations with them about okay, why isn’t this quite right with the new rules and how do we correct that in the future?
And then the last thing is, we know this is a big change and we do want to get it right. We do want to provide clarity with how to use your funds and make sure that we’re protecting participants from exploitation and unscrupulous providers and all of those things. We also want to maintain choice and control and flexibility, which are integral to the scheme. So the agency is also conducting an evaluation that will be ongoing for the next 12 months, but just yesterday we’ve released some of our very early observations that speak to the things about how do we need to improve the implementation of this rule. So I know the team are going to drop it in the chat, but there’s some early observations as part of that evaluation and that will be ongoing for the rest of this year.
So that’s my early kind of observations so far. Thanks, Marg.
MARG: Excellent. Thanks, Alex. And now I’d like to actually throw to Megan and Darryl because these are the things that we’ve heard. Does that resonate with you and what you’re hearing from your members, Megan?
MEGAN: Yes, look, absolutely. I think the important part of why we’re even here in the first place is because of the fact that we’re hearing these things from our members. We’re hearing these things from our individual advocates, many of whom are NDIS participants, about the fact that their experiences are not always clear, and the confusion is quite high, and that there are things that they do need that are not clearly able to be agreed to or supported through this process, but there is also some grey areas because disability is dynamic. It is not a one size fits all, and so we need to make sure that the voices of people with disability, our representatives and our families and carers are at the core of how these things are done. Because if not, that confusion will continue and then there will be fear. And we already see the fear of not actually wanting to utilise our funds that we need to be able to just engage in everyday life, have jobs, go out in the community, do the things that we need to do every single day to just be like everyone else.
MARG: So when you say “fear”, do you mean people are worried about getting in trouble?
MEGAN: Yes, absolutely. People are afraid that they might ask for this wrong thing and that wrong thing. Or they might pre spend their money on something that ends up being not appropriate or doesn’t fit the requirements. And I think that talks to the fact that we need to make sure that things like the replacement process or the substitution process is really clear what is able to be substituted. But also where are the grey areas we’re allowed to consider because of the fact that, again, people with disability, we are not a one size fits all. Once you meet one person with similar disability or impairments, you’re meeting one person with that specific set of needs.
MARG: Yes. Thanks, Megan. Darryl?
DARRYL: Yes, thank you. I’d echo the comments made, and Megan’s in particular, around the importance of listening to the participants as part of this consultation process. I mean, it’s great Megan and I have had the opportunity to be here, but the participants’ voice and what they’re experiencing is one of the most critical things we’d like to see listened to as part of this consultation.
And I think it’s worth acknowledging and you touched on it briefly, Marg that these changes, whilst we’re here to talk about NDIS supports, participants are experiencing these changes in the context of a raft of other changes happening to the NDIS. So, I don’t want to derail this conversation, but I think when the rules are being updated, that’s an important consideration as part of that.
In terms of some of the things we’ve heard, I would again echo Megan’s comments around some of the challenges with the list approach and particularly how the lists are being applied at the moment. And how that doesn’t appropriately recognise that everybody experiences disability in their own unique way and therefore a black and white list of what is and isn’t a support doesn’t kind of correlate with that process. And that’s why as an organisation and the DROs, the Disability Representative Organisations, collectively have been calling for that principles based approach to NDIS supports accompanied by clear guidance so that people can make those decisions themselves as to what is an appropriate support for them.
And then just to maybe touch on one or two other really important areas that we’ve seen from some of the feedback from the lists, when you look at the out lists, there is a number of references and Alex, you touched on these too – standard items, be that household items, furniture, scooters and mobility equipment. And I think what that fails to recognise is that what’s a standard item for someone might actually be a genuine and really valuable disability support for another.
So just to throw a couple of examples in there quickly, noise cancelling headphones. You know, for someone with sensory or anxiety needs, they can actually provide a genuine and really valuable way to access the community that they wouldn’t otherwise be able to do. Completely acknowledge for others it’s a bit of a gadget or a tool that doesn’t fit that.
And another example along those lines would be for people with intellectual disability. Often visual supports are really important, a visual timetable. Communication supports, and therefore the ability to access a printer and often a laminator, or something, to be able to develop those communication supports quickly and efficiently is another genuine disability support for some. So, again, we’d like to see more flexibility around the application of that term “standard items” so that somebody can identify what is a genuine support for them.
And then probably just the final area to touch on is again one that’s been mentioned. But that interpretation I think has been a big challenge. I think there are a number of different parties involved in the interpretation of these rules, from NDIS staff that Alex mentioned, to local area coordinators, support coordinators. And we’re seeing inconsistent interpretation. And that’s, as Megan touched on, increasing that anxiety and that concern around doing the wrong thing and therefore whatever consequences may flow from that. So it will be great to see some of those addressed as part of the updating to the rules.
MARG: Yes. Thanks, Darryl. I might just pick up on one of the things because you’ve got a lot there, between you and me. But one of the things maybe we can talk about around the grey areas is those particular, you gave an example of the noise cancelling headphones and perhaps we can just tease that out a bit more because I think we’ve heard that quite a bit. Sarah and Alex, do you want to talk through what sort of appropriateness, you know, when we were talking about the lists, where that sits?
ALEX: Yes, it’s a really good example of something that, as Darryl said, lots of Australians want to use. I have a pair that I use when I fly and lots of people can purchase those and they’re a standard item off the shelf, they’re not modified. And so in a lot of cases they won’t be specifically disability related, would not meet the funding criteria and would be appropriate to be on the list of things that are not NDIS supports. That is true and that is kind of currently the interpretation of the list.
I think what Darryl is getting at is, and as Megan said, everybody’s experience of disability is unique and individual and so what is reasonable and necessary for one individual has to consider their personal circumstances and so having an item like that on a no list, on an out list, does create that confusion.
I think lots of people consider items like that as assistive technology. But when we think about assistive technology, we think about things that are designed to help with your everyday life, things that are meant to assist with kind of your experience of your functional impairments related to disability. And something off the shelf like noise cancelling headphones doesn’t necessarily fall into that category.
So it is a good example of where, in the pursuit of clear definitions, we’ve actually created a little bit of confusion about that particular item. And particularly when people have things like low cost AT and consumable budgets that you might have purchased kind of low cost tech devices and so that is an area that would benefit from clarification, I think.
I think in most cases, as Darryl said, it’s probably not specifically related to someone’s disability and it wouldn’t be appropriate for the NDIS to fund, but maybe in a very small number of cases it would be and so how do we define that better.
MEGAN: I would really talk about the fact that things like this can end up being actually cheaper and more cost effective than similar items that would be more requirement of, so we might require more soundproofing or things like that. Whereas in things like loops, which I need to use every single day to be able to just do my job, fidget devices, even like the fact that I’m holding one now to be able to do this webinar and to be able to be articulate and be able to communicate in a way that is, you know, socially viable, these are things that mean that I can do my job, but there are more expensive versions that I could be using. These things should be covered for people where this actively makes sure that they can engage in everyday life. Like it needs to be clear what is the line and how we do that? And how we do that as part of replacement processes as well is going to be so important. How we educate local area coordinators, planners, everyone on what is viable for the individual for that choice and control is going to be so key.
MARG: Mmm. So can I go back, Sarah, then to the actual rules, like how can we, you know, this is a consultation process and listening to the feedback, how can we actually take some of that feedback and what could the rule look like to assist, you know, that more choice and control or more specific this relates to my disability piece?
SARAH: Mmm, yes, thanks, Marg. I might start with a comment that Darryl made about that we’ve heard lots of questions about why can’t the lists be, why can’t we have a principles-based approach for the NDIS supports, why do we need lists?
So, at the moment we have principles-based guidance around funding for participant plans and people are really familiar with that in the reasonable and necessary criteria of the Act. Accompanied by that, there were many lists that the agency promulgated to help participants to understand what could be reasonable and necessary, and what we funded, guidelines and the like. And there was lots of disputation and reviews about individual supports for participants.
So putting aside the fact that we now, we have a current principles-based approach and there are things that weren’t working, aren’t working, about that, I’m going to take a very straightforward legal response to the question of why we have to have lists. And that is quite simply the interpretation of section 10 on its face, it specifically requires the declaration of things which are or are not supports. It’s very much identifying things and not principles.
So when we were working on developing the lists, our focus was to create these broad categories so that there was confidence and room to work within the grey. And what we’re hearing even and discussing today, is there’s so much more work to be done to enable and empower participants to make decisions about their own supports related to their personal circumstances with confidence within those categories of supports. And not have plan managers and other people in their lives worried about whether a thing appears on the list. Really quite simply, if it’s not specifically described as not an NDIS support, then we should be thinking creatively and broadly and empowering participants to make decisions within those broad categories of supports that are not intended to be exhaustive.
But I think, I really encourage people to, all the bush lawyers out there, and I know there are plenty of you, I can tell you we’ve looked at it inside out and I know there was a lot of confusion about. It’s the constitution, it’s the vibe, it’s really the plain reading of section 10 that requires the rules to declare specific things that are NDIS supports.
So we pushed it and we want to stick with these broad categories. And we want to get clarity and hear what we’re hearing already in this discussion about where concepts and definitions like standard item need to be adjusted. And there’s lots of things that we can do, Marg, and the explanatory guidance for the rules, thinking about the definitions, thinking about interpretive guides to help participants think about. And we talked about this, Darryl what are the four things that I can think about with confidence to make a decision about whether I can purchase a support within the broad categories of NDIS supports. So I think there is lots we can do.
MARG: And I’m just going to clarify when you say section 10, that’s the part of the Act that lists NDIS supports?
SARAH: Yes.
MARG: Great, excellent, thank you. We might go to some questions online, perhaps, to see if we can answer some of the big questions. It’s so easy to get caught up in our conversation, but we want to hear some of the questions that are coming in. So, when we go through this process… oh, here’s a question online: “Will there be an exposure draft of the proposed rule?”
SARAH: That’s what we are absolutely committed to working towards.
MARG: Sorry, can I just before you answer, what’s an exposure draft?
SARAH: An exposure draft, that’s a good question. So, at the moment we’re consulting and gathering feedback, we’ll produce a report, but people need and want and deserve to see the actual text of the draft rule before it’s made and to be able to comment on that. So that is what we are working towards. And that’s why we’re starting consultations now. Because we know it’s really important to the disability community to see how the consultation translates into changes to the rules and be able to provide feedback and ask questions about that.
MARG: So you’re aiming to have an exposure draft of this rule?
SARAH: Yes.
MARG: And we talked earlier that there’s going to be lots of changes coming up. Will they all have exposure drafts or is it sort of a case-by-case basis depending on the timeline?
SARAH: So it really will be a case-by-case basis. But what we are working closely with the agency to do, is to communicate information as and when it’s available. And what we’ve previously done, is published guidance which is in effect the text of rules as early as we can. And that’s what we will continue to do as government makes decisions and works with us and the agency about the roadmap for reform, which we know the disability community are really calling for.
MARG: Thanks, Sarah. There’s another question that’s come in, and it talks about the in list and the out list. So, if the in list isn’t an exhaustive list, it doesn’t have everything on it, then why have an in list? Why don’t we just have an out list?
SARAH: Again, that’s what the rule requires us to include, is to specifically declare what is an NDIS support and at the moment there’s 36 categories of supports. They are based, they were based loosely on the provider registration categories. What’s missing in those categories of supports that people are struggling with, and missing out on supports that they would previously have and need access to for their personal circumstances, is what we are keen to hear about.
MARG: Those 36 categories, can I just check in with Megan and Darryl perhaps, is it hard for participants to map their needs in those categories, you know?
DARRYL: Yes, I think it often can be hard for people to think about it in those strict categories. And then to have to look at an in list and then refer to an out list to make sure it’s not on that as well. And I think that the clarity that Sarah offered before around more guidance on the fact that the in list is an indicative list and then there’s some interpretation allowed and how an individual might do that interpretation, I think would be really valuable.
MARG: Mmm. Do you think that’s possible? Like do you think we could provide that kind of guidance, you know, a key, I don’t know, five questions that a participant can ask themselves?
MEGAN: I think so. I think the other thing we have to think about with the categories, is that sometimes within the disability community we use more colloquial terms or different terms that mean the same thing. And we’ve seen a few of the things that we would use colloquially, but are not actually the terminology that’s used as part of the overarching on the out list even if it’s actually something that falls under the in list requirements.
So, you know, we know that things like, there was a big debate, obviously, around gaming therapy and the fact that there is actually a lot of demonstration that different types, not necessarily you know, there’s many different types but that are part of community building or ability to build social connection and communication tools that are actually part of that. But because of the differential use of how terms are used and what they actually mean for the disability community versus under kind of therapeutic or provider requirements this is where people get confused. And we’ve seen noes to things that actually do fit the categories correctly. And we’ve seen some really proactive providers go in and go, “Actually, this is what this means and here’s the information to help you with that”, but they’re doing that to help people off their own bat and not doing it for money.
There’re small groups that are doing that, but then when you’re an individual trying to do this yourself, that’s not necessarily resources that you have access to. And so how we make sure that you’re not only understanding what it is, but what is the difference between the term we use within the community versus a provider term.
MARG: Mmm, yes.
DARRYL: I think another great example would be for the intellectual disability community conferences. So often people with intellectual disability will get together and there’s a peer support, capacity building component, similar for families around building capacity to support someone with disability. Historically they’ve been billed as a conference and now that word conference is on the out list. But if you look at the nature of the support, there would be, I would hope, very little doubt that it was a genuine disability support for those people. Again, another unintended consequence that we’d hope could be addressed as part of the consultation.
MARG: Yes, good examples, thank you. There’s another question that’s come in: “The in list is being used by plan managers and NDIS staff. As it is written, there is no flexibility at all. How is that being managed by the NDIA as well as in reviewing the rule?” I might throw to you for this one, Alex.
ALEX: Thanks, Marg, and thanks to the person who asked this question. It’s a beautiful segue from the conversation we were just having.
We know that, as we’ve talked about, these changes happened quickly, and we were communicating about them as they kind of came into being. And so it is an ongoing work of the agency to continue having conversations with our staff or our partners, our plan managers, our support coordinators, the advocates that support people with disability. To make sure there is shared understanding. And also, to make sure that those interpretation of the ways we use different words, the unintended consequences, like the example Darryl just shared, rise to the surface. So that the agency and the department can understand them and work to resolve them.
So we appreciate that particularly plan intermediaries, people like plan managers and support coordinators, are doing their best to also interpret these lists. And so we’re trying to offer as many opportunities as possible for them to come and talk to us. We’ve done lots and lots and lots and lots of information sessions specifically for them. We’ve also recently launched a dedicated part of our contact centre, so our 1800 number, that providers can call us and have those conversations directly. But we appreciate that kind of training engagement education needs to be ongoing. And as we’re discussing here today, we also need to kind of update and make sure the rule is fit for purpose itself. So, no easy answer, but a really great question. Thank you, Marg.
MARG: Yes, thank you. I’m just checking, Sarah, is there anything that you wanted to add around that?
SARAH: No.
MARG: No? All good? Thanks. Okay, another question that’s come in, thank you, is: “What therapies that were removed from the approved list has the NDIS had the most feedback about?” This is a great question for everybody. You touched on gaming therapy before and we’ve also heard a little bit about the Evidence Advisory Committee, so I think this is a really good start. Maybe do you want to start, Alex, and we’ll sort of ‑‑
ALEX: Yes, I mean, I’ll say what I’ve heard, but I’m keen to hear, Megan and Darryl, your views as well.
So, I think Megan is exactly right, when we first started having these conversations on 3 October, it was animal assisted therapy, it was gaming therapy, it was music and art therapy. I’m not deliberately picking the controversial topics, but they are genuinely what we’ve had the most questions about. I think Megan has kind of hit the nail on the head already. It is not to say that therapies are banned. It is, I think, there has been a difference in how we use that term “therapy”.
So, for example, animal assisted therapy, if it is delivered by an occupational therapist or a psychologist or a speech pathologist as part of delivering a service that is funded in someone’s plan, the agency does not mind if there is a dog or a horse or Dungeons & Dragons used in that setting. That is absolutely something people can continue to access.
I think what we tried to clarify in the establishment of this rule, is running a normal Dungeons & Dragons club and calling it therapy and charging people with disability to be there as something that would have existed in communities for free at games workshops, at people’s houses, at the local library, isn’t appropriate and shouldn’t have been allowed. You shouldn’t have been able to draw on NDIS funds to deliver social clubs that existed well before the scheme did.
So, I think that’s where people have used language in a way that has had unintended consequences. We want people with disability to engage in their local clubs just like every other Australian has an opportunity to. We don’t want them to be in special segregated Dungeons & Dragons that are costed. So, we want that social inclusion. So, if you do go to D&D, but you need a support worker to help you get there, that’s absolutely what the NDIS would fund and should be used from your plan.
So, this is such a great question, and I think goes exactly to Megan’s point that the terminology we use sometimes is not, we’re not using the same definition when we use the same word, yes. But what have you guys heard?
DARRYL: Agree with most of your points, Alex. I think the only one I would add would be that there’s then this grey area on some therapies. Which is not different to the conversation we had before around standard household items, where something like remedial massage for some people with disability can be a genuine disability support. But completely agree, you know, people shouldn’t be funding trips to the day spa out of their NDIS plan. So again, it’s that need to identify the individualised basis what is a genuine support for that person.
MEGAN: Some of the things we hear are around obviously the evidence-based aspect, especially around who is deciding what is evidence and we know that that is something that is in the works, but obviously this is happening now, and the evidence aspect is in the works.
The reason that we hear about this is because people with disability have historically been left out of research. Because from ethics requirements, they actually haven’t been allowed, especially people with intellectual disability have not actually been allowed to be part of research, let alone lead their own research. So, when you sort of talk about evidence based, you’re talking about evidence based that’s based on not necessarily including the people that it’s for. And so I think that’s going to be something that’s really important is how do we determine what is valid evidence in these set of circumstances.
The other thing we’re hearing about is things like obviously you’ve touched on many of them and so has Darryl, but things like even just going to the hairdresser to have your hair washed. And the reason that we talk about that is it’s not about going and doing all these things. But sometimes you need to go to a hairdresser to have your hair washed because you physically cannot do it yourself. And a lot of the time it’s a social aspect, it’s also a safety aspect because there’s a third party outside of your support workers, outside of your family, that if you’re not turning up to this, then they know there’s a safety issue or they’re able to determine if things are going on. But then in addition to that, actually a lot of the time it ends up costing a lot less than having a support worker come in just to wash your hair.
So we have to think about these sorts of things of, are these actually things that should be on the out list in the way they currently are? Or do we need to think about how do we do that replacement supports process so that it’s not rigid or confusing, as many people are feeling and experiencing, and therefore is being potentially underutilised. I think that is going to be such an important part of if the lists have to stay and we can’t go just, you know, back to the principles based process, then choice and control is going to be so important through how that replacement support process is done and how people are educated to support people through the replacement support process as well.
MARG: Yes, absolutely.
DARRYL: And in that process, let’s make sure that we acknowledge the participant’s right to choice and control, as you say, Megan. And in most cases, their ability to effectively exercise that choice and control. So, we’ve seen a couple of things from the agency where everyone gets bundled into the same bucket with a view to, you know, restricting some of the wrong practices that were happening. We all acknowledge they were happening, and they need to be stopped, but most participants are out there trying to do the right thing and let’s give them that credit and provide them the tools for them to be able to make the right decisions.
ALEX: Make it easier to do the right thing, yes, absolutely agree.
MARG: Yes. We’ve got another question here. So “The current setup is not the only way of meeting the requirements of section 10. Why can’t we codesign the solution?”
SARAH: So that’s a very broad question, so I might tackle it first from the perspective that we have to follow the requirements of the Act. So, it’s within that context that we have room to codesign and to engage and listen and hear about what is and isn’t working.
Some of that might be part of the rule design, but I don’t think that’s ever the solution. So, so much of it is what Alex has been reflecting on and that you’ll see also reflected in the agency’s evaluation. So, they’re learning as they’re implementing, and Alex has reflected on some of that. So, I think we are working now to look at what we can do creatively to meet the needs and respond to the experience of participants where that has been unnecessarily restrictive or if there’s something that we can do to make changes to the legislative settings.
ALEX: I would just add, Sarah, that participants’ voices are very much being heard as part of this process. So, you know, different people have different definitions of codesign. We try to say, like Darryl said in his opening remarks, the most important thing is hearing from people with disability whose lives are impacted the most. And so we’re running this consultation process, but also we’re looking at every single phone call that’s being made to our 1800 number, every single application that’s being made to the replacement process, every, we’re surveying, you know, hundreds of people as part of our evaluation, we’re working so closely with sector advocates like Darryl, like Megan and many others in overseeing that evaluation process.
We’re analysing the data. To Megan’s point, we want to make sure there isn’t an unintended consequence where people are not utilising their plan. So we are incredibly lucky and grateful to have such amazing data and insights about how participants use their funding. We’re using all of that in considering what we need to change for this rule.
So, I completely appreciate there is so much changing about the scheme right now and we have to make sure that we are focusing our deep codesign efforts on building a scheme for the future while we continue to refine and listen and hear from people with disability to fix these other problems right now.
So, I don’t think it’s a choice we’ve made to say this is codesign and this is not codesign, but rather we’re thinking about how do we incorporate the voices of people with disability and participants in the scheme across all of the reform work that we have to do. So, I think that’s something we are genuinely committed to.
MARG: There’s a question that’s come in that sort of dovetails into this around service providers, like how will we be consulting with service providers to get their feedback as well to make sure that the current lists are fit for purpose?
SARAH: Yes, absolutely, and we have, and I personally have had some recent engagement with the NDS and a number of providers through a variety of mechanisms and that’s really important too. And I know there’s been lots of provider engagement being done by the NDIA.
ALEX: Yes, lots of conversations with providers. Providers can also take part in the survey. They can complete a submission. It’s absolutely not excluded to them. They’re an important voice in the consultation, so I really encourage them to take part. But yes, we’re out and about talking to them on an everyday basis as well.
SARAH: Yes, yes.
MARG: That’s great. I might just go back a step because we’ve mentioned the Evidence Advisory Committee a couple of times and we’ve talked about what is evidence therapy. So, can you, Sarah, maybe just give us a bit of an overview on what the Evidence Advisory Committee is and when is it going to kick off and those sorts of things?
SARAH: Yes. So, we’re really excited about the Evidence Advisory Committee commencing from July. Obviously they can’t look at everything always. And I think the recent meeting of disability ministers considered their work plan and they will be able to start communicating what their priorities are and how they will gather evidence. And really importantly, reflecting on Megan’s comments, the evidence of people with lived experience is I know forefront in terms of the way that they want to work.
So we’ll be able to find out more information about what their work priorities are and who’s on the Evidence Advisory Committee really soon. And that Evidence Advisory Committee will provide advice to disability ministers and help inform us about continuous improvement of NDIS supports and practice, understanding and awareness for the agency and providers and for participants to again have confidence in the way in which they use their plans.
MARG: Excellent. Thanks, Sarah. Can I just check, will the Evidence Advisory Committee be able to put like how will we know what they’re doing? Will it be on the website?
SARAH: Yes, it will. I think they’ve got some priority areas that they’re focusing on and they’re some of the ones that we’ve talked about today, but they obviously can’t do everything at once and so they will be releasing some information about some of the priority areas that they’re looking at in the NDIS supports on the DSS website, actually it will be the Department of Health website, I think shortly.
MARG: Yes.
SARAH: But we will certainly promote through our good partners in Megan and Darryl and others when that information is available.
MARG: Great. Thank you. We are almost out of time. I just want to check we’ve noticed that there’s been some issues raised around sound and access, being able to access this webinar. We’re going to actually be publishing the webinar, recording of the webinar, on our website soon. And any questions that we haven’t been able to get to, we’re going to use that information to publish a frequently asked questions kind of document. And as sort of Alex mentioned, everything that we’ve talked about today as well as the questions online that we haven’t got to we’ll build into an evaluation report for the consultation process.
So, I’m going to give a little plug to the Slido QR code that you’ll see up on the screen. We really want to hear your feedback. There is a survey that’s active. We did a survey because we just wanted to make it as easy as possible for people to be involved in the process. If you wanted to do a formal submission, you’re welcome to do that as well. There’s a discussion paper online, so feel free to get in contact and take part in whichever way that suits you best.
The consultation process is open for another month or so. It closes on 27 July. It’s a six-week process. So, I just wanted to point everyone to the website, that would be great.
I think we’re just about out of time, so I would like to thank you very much, Megan and Alex and Darryl and Sarah, for your time today.
Before we finish up, I just wanted to check if there was one thing perhaps, Sarah, that you might want to think about as we update the rule, what’s some sort of key things from today’s discussion that you think we will take away with us?
SARAH: Yes, so every time we have a discussion there are many things that go around. And I think, I mean, the thing that concerns me most in the meantime while we are reviewing the rule is how can we really give confidence to participants to work in the grey, to make decisions that work for them and their personal circumstances within the broad categories of support. So in the meantime, I’m really interested in working more broadly with the agency and with the disability community in looking at and understanding how people are currently interpreting and working within those categories.
But obviously the key issues coming up are how standard items are treated and interpreted to enable participants to meet their needs. That’s a really key issue that we’ve heard in conversation today. And really key things like conferences and the importance of community participation and events to build capacity and confidence and be able to reinterpret and think more broadly about some of the items on the exclusion list without waiting for the rules to be updated. We’ve obviously heard about the need for ongoing training and guidance and some of the tricky areas around understanding and being confident about therapy and the replacement support process.
So, there’s plenty for us to take forward, but it’s not all about the rules. Let’s try and get confidence and clarity in working with those broad categories of supports that we have at the moment.
MARG: That’s great. Thank you, Sarah. Thank you, everyone, for your time today and thanks for being a part of the webinar.
There will be a little link in the chat, the Slido chat, that gives us an evaluation link. We really want to hear your feedback about how today went. As part of the consultation processes as we develop new rules and update other rules, we’re going to be doing more and more of these webinars, so really keen to get your feedback on how today went. Clearly, there might have been some sound issues, so we’ll work with that, but really keen to improve and look for other ways to engage with you as our audience. So, feel free to give us some feedback.
For those online who have registered, we’re going to make sure that we email out once the webinar is live on our website. So, if colleagues couldn’t make it today, feel free to share the link around as well.
So, thank you to our audience for being here today. It’s been great having you online with us. Thanks again to our panel and we’ll see you next time. Thanks, all.