Full Transcript for NDIS Changes Part 2: Self care amid the uncertainty

TRANSCRIPT 🔗

WEBVTT 00:00:00.479 --> 00:00:06.639 Get Real is recorded on the unceded lands of the Boonerong and Warunjury peoples of the Kulan Nation. 00:00:06.639 --> 00:00:11.279 We acknowledge and pay our respects to their elders, past and present. 00:00:11.279 --> 00:00:24.719 We also acknowledge that the first peoples of Australia are the first storytellers, the first artists, and the first creators of culture, and we celebrate their enduring connections to country, knowledge, and stories. 00:00:28.160 --> 00:00:31.519 Welcome to GetReal, talking mental health and disability. 00:00:31.519 --> 00:00:34.240 Brought to you by the team at NAMA365. 00:00:34.719 --> 00:00:44.880 Join our hosts Emily Webb and Karenza Louis Smith as we have frank and fearless conversations with special guests about all things mental health and complexity. 00:00:48.640 --> 00:00:55.359 We recognize people with lived experience of mental impact and disability, as well as their families and parents. 00:00:55.359 --> 00:01:07.519 We recognise their strength, courage and unique perspective as a vital contribution to this podcast so we can learn, grow and achieve better outcomes together. 00:01:09.920 --> 00:01:14.079 Welcome to Get Real, Talking Mental Health and Disability. 00:01:14.079 --> 00:01:15.760 I'm Emily Webb. 00:01:15.760 --> 00:01:24.640 This is part two of our episodes on the changes to Australia's NDIS, which is the National Disability Insurance Scheme. 00:01:24.640 --> 00:01:35.120 If you haven't already, go to part one, which is a conversation with our co-host Karenza Louis Smith and National Disability Services CEO Michael Perusco. 00:01:35.120 --> 00:01:47.439 In this episode, we talk about self-care amid this time of uncertainty for people who access the NDIS, their families, and also those who work in the sector. 00:01:47.439 --> 00:02:03.280 But firstly, here's some thoughts about the NDIS changes, or what we know so far, from Shane Clifton, who is an associate professor at the University of Sydney and Director of the Centre for Disability Research and Policy. 00:02:03.280 --> 00:02:06.560 Shane is also an NDIS participant. 00:02:06.560 --> 00:02:12.800 He lives with spinal cord injury and he is a board member of the Disability Trust. 00:02:14.159 --> 00:02:20.560 This week is the culmination of a long period of challenge for people with disability. 00:02:20.560 --> 00:02:27.919 I lived experienced person with disability, as I've got many friends and colleagues who have lived experienced. 00:02:27.919 --> 00:02:30.879 And for the last at least a year, maybe longer. 00:02:30.879 --> 00:02:42.400 The the press, particularly certain portions of the press, as well as as the public have been waging a relentless campaign against the NDIS. 00:02:42.400 --> 00:02:44.479 I had a spinal cut injury. 00:02:44.479 --> 00:02:48.479 I've lived with spinal crit injury since 2010. 00:02:48.479 --> 00:02:53.120 And so I indeed quite substantial support. 00:02:53.120 --> 00:03:09.919 So I'm I'm really not just speaking on my own behalf, but recognising the anxiety distressing an unlucky. 00:03:09.919 --> 00:03:15.599 I recognize that the screen needs to change. 00:03:15.599 --> 00:03:18.080 We need a sustainable screen. 00:03:18.080 --> 00:03:20.800 We need a public support. 00:03:20.800 --> 00:04:12.319 I guess that's a very concern that I've got my second concern is really about those people who happen to be equal to the game because that creates anxiety either way. 00:04:12.319 --> 00:04:19.120 And I'm not an expert on who should or shouldn't be on this game. 00:04:19.120 --> 00:04:22.000 What I do know is that and Mr. 00:04:22.000 --> 00:04:33.279 Butler announces that the scheme has been a lifeboat in an ocean, the only lifeboat in an ocean for many people with disabilities who were desperate for help and support. 00:04:33.279 --> 00:04:39.199 And when they got on the scheme, it transformed their lives and made a huge difference for them. 00:04:39.199 --> 00:04:51.680 And you know, if if the NS has been this lifeboat in the ocean for so many people, what happens to those who are taken off the scheme or who are worried about it? 00:04:51.680 --> 00:05:00.959 Will there be the necessary supports in place for them to be able to live a good life to get that help that they need to flourish? 00:05:00.959 --> 00:05:09.439 And I'm not easily convinced that those mechanisms are in place here for the people who come off the scheme. 00:05:09.439 --> 00:05:32.639 And also, whatever happens in the meantime, we're still in this period of data uncertainty for people with disabilities who are worried about what happens to me if I get kicked off, or am I going to be one of those who get kicked off or what's going to happen to the size of my package on the doing wealth? 00:05:32.639 --> 00:05:35.759 It's a difficult time for people with disability that is official. 00:05:35.759 --> 00:05:38.720 People say it is welfare. 00:05:38.720 --> 00:05:41.759 People don't like welfare changes today. 00:05:41.759 --> 00:05:43.360 It's not welfare. 00:05:43.360 --> 00:05:45.360 You know, we're not paying cash. 00:05:45.360 --> 00:05:47.519 It's the provision of support. 00:05:47.519 --> 00:05:54.560 And yeah, it's really distressing to see the way in which the community has responded to it, to be frank. 00:05:54.560 --> 00:05:54.959 Yeah. 00:05:54.959 --> 00:06:00.000 I've been through these changes on a lot in the last 58 years. 00:06:00.000 --> 00:06:05.600 Unfortunate, you know, I'm an academic with a reasonable summary. 00:06:05.600 --> 00:06:06.879 I've got a spinal cord injury. 00:06:06.879 --> 00:06:10.480 I'm not one of the ones likely to be kicked off this game. 00:06:10.480 --> 00:06:14.319 So my concern really isn't about myself. 00:06:14.319 --> 00:06:19.360 That's not determined to say crazy button. 00:06:19.360 --> 00:06:29.920 It's just that I think the more vulnerable parts of the population and those with a less obvious

Load full transcript

and less visible disability are likely to be doing it much tougher than I am at the moment. 00:06:29.920 --> 00:06:34.240 I think the key is this is going to be a difficult time. 00:06:34.240 --> 00:06:39.040 Let's allow ourselves to be angry, to complain, to cry, whatever you need to do. 00:06:39.040 --> 00:06:42.480 Reach out to one another in support is, I think, the key. 00:06:42.480 --> 00:06:48.720 And so you know, reach out to if you're with a disability trust, to your support workers and to your peers. 00:06:48.720 --> 00:06:59.439 I guess my experience of times of crisis is that they're horrible and terrible, but they also are potentially times where we come together and provide strength to one another. 00:06:59.439 --> 00:07:07.519 And hopefully that will be the case for people with disability during the next few months and years as we go through these changes. 00:07:09.839 --> 00:07:15.120 Now let's go to our conversation about self-care amid this time of uncertainty. 00:07:15.120 --> 00:07:28.319 Joining Karenza and I to talk about this is Evelyn Ireland, known as Ev, a psychologist, a behaviour support practitioner, and general manager of the Disability Trust's clinical services. 00:07:28.319 --> 00:07:35.360 Ev, there's been a lot of changes, a lot of news about the NDIS. 00:07:35.360 --> 00:07:47.120 The detail is still a bit murky, but it's been a big lead up and probably quite a distressing time for people with disability and the people who support them. 00:07:47.120 --> 00:07:48.399 How's it been? 00:07:48.399 --> 00:07:52.480 Yeah, look, I think it is really difficult. 00:07:52.639 --> 00:07:58.800 As you said, the the uncertainty I think is a very difficult landscape for us to all be in. 00:07:58.800 --> 00:08:00.720 Merkey is a really great word for it. 00:08:00.720 --> 00:08:08.639 It's trying to lead people and work with people and provide some assurance and certainty in a time that feels very, very challenging. 00:08:08.639 --> 00:08:23.759 I think another layer of that for us working in disability services and for the people that we support is that some of the rhetoric and some of the conversation can lead to people feeling quite devalued or that their services aren't important. 00:08:23.759 --> 00:08:29.279 And that is really it's a really challenging place to work in and to advocate for people. 00:08:30.079 --> 00:08:33.120 I think what we're seeing is that these changes are really big. 00:08:33.120 --> 00:08:35.600 And as Emily said, there's not a lot of details. 00:08:35.600 --> 00:08:41.840 So, you know, with people are saying that they feel significant anxiety, you know, there's a lack of trust. 00:08:41.840 --> 00:08:43.039 What does this mean? 00:08:43.039 --> 00:08:48.639 And I think I'm really keen to think about when things feel really difficult and there are no answers. 00:08:48.639 --> 00:08:52.960 How can you look after yourself when everything feels a bit scary? 00:08:52.960 --> 00:08:56.159 You're worried

about will my supports change? 00:08:56.159 --> 00:08:58.960 Will the supports for my son or my daughter change? 00:08:58.960 --> 00:09:00.960 What does that mean for my plan? 00:09:00.960 --> 00:09:03.440 And there aren't any answers, you know. 00:09:03.440 --> 00:09:05.519 So people aren't going to have the answers to that yet. 00:09:05.519 --> 00:09:11.600 And for some people, there'll be no changes, other people there might be some changes, they might be small, they might be bigger. 00:09:11.600 --> 00:09:15.360 But I think the thing is people are sitting not knowing what they are. 00:09:15.360 --> 00:09:19.039 How can people look after themselves in this time? 00:09:20.240 --> 00:09:22.080 It's a really important conversation. 00:09:22.080 --> 00:09:31.279 I think I would start with having an understanding that these stressful events and this has a significant impact. 00:09:31.279 --> 00:09:38.240 Stress has a significant impact on people, and being attuned to or understanding how that impacts you yourself. 00:09:38.240 --> 00:09:45.600 So learning some of those early warning signs or an understanding of your own nervous system or how that impacts you. 00:09:45.600 --> 00:09:56.399 So it might be, you know, changes in your sleep habits or changes in your relationships or feeling, you know, extra cranky or or irritable and you know not being able to hold interest in things. 00:09:56.399 --> 00:10:08.159 And so, as a first step to taking care of yourself, is that having some acknowledgement or or some noticing that you might not be coping and what that might look like for you is a good place to start. 00:10:08.320 --> 00:10:09.679 That's hard, isn't it? 00:10:09.679 --> 00:10:17.600 Because sometimes you just kind of keep going and you push it to one side or you push it away and you think, I'll I'll I'll deal with that later. 00:10:17.600 --> 00:10:19.679 I think that's a really important thing, isn't it? 00:10:19.679 --> 00:10:21.679 So do you you notice those things? 00:10:21.679 --> 00:10:24.559 What are the sorts of things that people should look for? 00:10:24.559 --> 00:10:32.159 You're saying, you know, maybe I'm not sleeping as well, I'm starting to have thoughts that, you know, don't stop in my mind. 00:10:32.879 --> 00:10:43.039 Yeah, I think yeah, changes in in your relationship, any sort of changes in in habits that you might usually have that are helpful to you. 00:10:43.039 --> 00:11:01.279 And I think that's a good point you make, Kerenza, around that noticing is difficult, especially if we are in that stress response ourselves, if we're in, you know, what we might call fight or flight, or if we're in that stress response, stopping and noticing can feel impossible or cannot be easily available to us. 00:11:01.279 --> 00:11:09.200 And then so starting to talk about self-care or the strategies that you're going to use can also feel like an extra burden, right? 00:11:09.200 --> 00:11:22.159 It can feel like, well, oh gosh, you know,

like I'm already feeling super stressed and I don't have enough room for the things in my day and I've got all this uncertainty, and now I've got to like, what, take some extra time to have a bubble bath or something? 00:11:22.159 --> 00:11:24.080 It can feel like a real burden. 00:11:24.080 --> 00:11:36.080 So often where I start with people is to really talk about self-care or some of those strategies as being not necessarily things that we have to add, but what is something that we can take away that's not serving us? 00:11:36.080 --> 00:11:39.279 What are some of those things that might creep in? 00:11:39.279 --> 00:11:56.320 They might be some of those early warning signs that we're not coping, like doom scrolling or not engaging in our exercise or you know, skipping our Pilates class or whatever it might be, missing a coffee catch-up with a friend, some of those early warning signs that might indicate that we're stressed. 00:11:56.320 --> 00:11:59.440 Some of these things can serve us or not serve us. 00:11:59.440 --> 00:12:02.159 So it might be, yeah, what are the things that we can take away? 00:12:02.159 --> 00:12:15.600 Do we need to limit some of our screen time or watching our favorite TV show might be really rewarding for us, but is it about not watching that extra episode that kicks us over to one in the morning so we get some extra sleep? 00:12:15.600 --> 00:12:24.480 So sometimes I invite people to think about what's something you can maybe take off your plate that's not serving you as your first act of self-care. 00:12:25.519 --> 00:12:32.480 You talk about doom scrolling, and I really want to go there because I think that's a huge thing for us, isn't it? 00:12:32.480 --> 00:12:34.480 You know, everything is negative. 00:12:34.480 --> 00:12:40.480 You jump on, you're reading commentary, you're seeing the things that people say, you're reading the words cuts, cuts, cuts. 00:12:40.480 --> 00:12:43.679 Yeah, feeds it feeds the anxiety, doesn't it? 00:12:43.679 --> 00:12:46.240 It feeds the fear, it feeds the worry. 00:12:46.639 --> 00:12:47.759 It absolutely does. 00:12:47.759 --> 00:12:52.799 And it's a really I could have a whole session talking about social media. 00:12:52.799 --> 00:13:02.720 I feel really strongly about how we have a good, balanced conversation about that, especially, you know, for the people we support and in different communities and for our work. 00:13:02.720 --> 00:13:12.960 Social media can be an incredibly important place where people feel connected to like-minded people, they can feel, you know, build relationships or have some get some important information. 00:13:12.960 --> 00:13:27.840 And also a side effect is if your feed is anything like mine, every second article is about NDS cuts, every second article is about, you know, somebody sharing their worries or concerns, and it can feel really difficult to escape from. 00:13:27.840 --> 00:13:40.720 If we think about stress, these stressful situations, I'm used to feeling a bit stressed when I go into a difficult meeting or if I'm about to have a particular session that I want to do really well. 00:13:40.720 --> 00:13:51.200 I'm not used to having that feeling, sitting on the couch scrolling at 11 o'clock at night, that stress response is not a helpful thing to be having in that time where it should be restful. 00:13:51.600 --> 00:13:58.639 So you're sort of saying first find the time to notice that that these things are happening to you. 00:13:58.639 --> 00:14:01.600 What advice would you give, you know, to our listeners? 00:14:01.600 --> 00:14:04.159 What are the things that you can do to start to notice? 00:14:04.159 --> 00:14:07.600 So if we go right back to the beginning, first thing, are you being stressed? 00:14:07.600 --> 00:14:08.720 Is this having an impact? 00:14:08.720 --> 00:14:11.360 Let's notice yourself what's going on. 00:14:12.320 --> 00:14:16.799 A really important component of this is preparation. 00:14:16.799 --> 00:14:24.799 I think often we think about and we want to activate and think about self-care often when we're in that peak point of stress and anxiety. 00:14:24.799 --> 00:14:26.879 So it's that preparation. 00:14:26.879 --> 00:14:33.519 I think that we, for those of us that cook, I'm trying to find an appropriate analogy. 00:14:33.519 --> 00:14:34.879 You know, we follow a recipe. 00:14:34.879 --> 00:14:37.120 If we go to the gym, we're following a program. 00:14:37.120 --> 00:14:41.039 Our self-care and our own maintenance shouldn't be any different to that. 00:14:41.039 --> 00:14:52.559 So I think having a self-care plan or things written down, having a conversation with a close person in your life around, you know, these are the things I notice about myself, you know, is there anything that you notice? 00:14:52.559 --> 00:15:10.399 And trying to open up transparency and some open conversations about that and and being honest with yourself, whether you write it down, whether you make a voice note, you know, young people have all, you know, sorts of different ways, you know, if you use notes on your phone or whatever it is, have a little checklist around some of those things that might be and bring that up. 00:15:10.399 --> 00:15:20.000 And and although when we're feeling stressed, our first response if someone can be to bring something up to you to say, hey, I've noticed this, it can be quite defensive or feel like something extra. 00:15:20.000 --> 00:15:26.879 But yeah, I guess having those close relationships where people can can help show that mirror a little bit to us. 00:15:28.240 --> 00:15:46.320 You know, we'll have people listening who might be parents, you know, they're worried about their children's plans, all of these things, you know, in in those moments of extreme stress, what are some of the things, you know, when you're completely overwhelmed, when you're feeling like the stress crisis, stress overload, I can't even think properly at the moment.

00:15:46.320 --> 00:16:03.039 What's some of the first aid things that you could do that I could do as a worried mum that that would actually help ground me again to take some of that steam or intensity out of all of those worrying thoughts? 00:16:03.679 --> 00:16:14.720 So there are individual strategies that that we can do and that are going to be different for each person around what what you find regulate your nervous system for your own personal self-care. 00:16:14.720 --> 00:16:30.000 We know the value of eating well, meditation, you know, having a moment to have some breaths, going out touching grass, as the young people like to say, connecting in with nature, having a valued conversation with somebody. 00:16:30.000 --> 00:16:34.480 They are all like immediate things, immediate sort of first aid strategies. 00:16:34.480 --> 00:16:43.039 I think another really important part of the discourse around self-care is that self-care strategies can actually be quite boring. 00:16:43.039 --> 00:16:49.279 It's not all bubble baths and yoga classes and why I'd like the idea of nice. 00:16:49.360 --> 00:16:49.519 Don't worry. 00:16:50.480 --> 00:16:52.480 Don't worry, Crunchy, they can also be part of it. 00:16:52.480 --> 00:16:56.879 I do mention, sorry, yeah, bubble baths have gotten a bit of a bad rap from me, this conversation. 00:16:56.879 --> 00:16:57.679 They are important. 00:16:57.679 --> 00:17:01.200 I do like them myself, but it can be about meal prepping. 00:17:01.200 --> 00:17:08.880 It can be about getting that basket of washing off the dining table and put in the drawer if that's going to help you tomorrow morning feel a bit more regulated. 00:17:08.880 --> 00:17:16.720 So I think to not necessarily feeling in that first aid moment, Karenza, that oh my gosh, I have forgotten my meditation. 00:17:16.720 --> 00:17:18.160 I need to add something on. 00:17:18.160 --> 00:17:22.240 It is really about what is something that I can do right now that soothes my nervous system. 00:17:22.240 --> 00:17:29.119 It might be playing Candy Crush for 15 minutes, it might be going for a walk, it might be sitting outside phoning a friend. 00:17:29.119 --> 00:17:37.519 And I think another really important component of self-care is that we shouldn't lose it in the context of community care or care for each other. 00:17:37.519 --> 00:17:56.240 And a lot of the self-care things that we talk about or strategies about our own nervous systems and what we can do for ourselves, but equally about what we can do for each other and reaching out if you're seeing somebody struggling or if you're having a difficult time that you've got someone that you can reach out and talk to. 00:17:56.240 --> 00:18:14.319 Advocacy can be a really nice way, you know, like writing a letter to the minister if or, you know, writing a letter to somebody if you feel like that is going to help you feel listened to and and heard in those stressful moments can also be an act of self-care or community care as well. 00:18:14.960 --> 00:18:21.119 Yeah, I was gonna ask about advocacy because often people can get such a heightened feeling and they can get really fatigued. 00:18:21.119 --> 00:18:37.680 And I just saw an email in my inbox this morning from people with disability Australia, and it's like, right, we've got to mobilise, do this, do that, and I get it because I know that I feel like taking an action is often a way to feel a little bit of control or a tiny bit of power. 00:18:37.680 --> 00:18:47.359 But there's also that I guess there's gonna be a lot of really tired people like who feel like they can't stop with this butt when you're coming up against the government. 00:18:47.359 --> 00:18:58.720 I mean, I don't think anyone who works in the sector, even I've spoken to people with disabilities who say, yeah, some things need to change, but I guess it's just the what is it all? 00:18:58.720 --> 00:19:01.279 Am I gonna lose some of my funding? 00:19:01.279 --> 00:19:12.960 What do you think about I guess that balance with just going so hard, like trying to advocate for your life and stuff, but sometimes the rest of us have to pick up the slack here. 00:19:12.960 --> 00:19:21.119 I don't access the NDIS, you know, I work for an NDIS provider or you know, different issues where you're trying to be an ally, I guess. 00:19:21.519 --> 00:19:43.279 It's really that intersection, isn't it, around where self-care becomes, you know, community care and how do we lean in as a community and know that the NDIS and supports that we provide for people are good for everybody and everybody it's worth fighting for for everybody, whether you're a participant on the scheme, whether you know you work in an organization or your next door neighbor. 00:19:43.279 --> 00:19:52.960 But as a society, that we all have to rally and stand up for the rights of the people that the NDIS helps and supports. 00:19:52.960 --> 00:20:06.160 And I think it's such a good point, Emily, in that we can't rely on the advocacy just coming from from the people that, as you say, can can be tired and burnt out, and that we all play a really important role in that. 00:20:06.160 --> 00:20:08.319 And like anything, it's a balance. 00:20:08.319 --> 00:20:14.799 We certainly, uh, you know, I say advocacy as a form of of care if writing those things down helps you. 00:20:14.799 --> 00:20:43.039 But if you're gonna stay up all night at three in the morning and and lose sleep over it, that's the that's the balance, the tipping point, and and I think a really important part of the conversation that needs to be as well as sharing the, you know, there's cuts and there's concerns around what can we do as people in society, what can we do to to support the people that we know this is so meaningful for, which is, yeah, everyone. 00:20:43.039 --> 00:20:47.839 I certainly want to be part of a country that that values people with disability. 00:20:49.039 --> 00:20:49.599 Me too. 00:20:49.920

--> 00:20:51.920 Corenzo, any final thoughts? 00:20:51.920 --> 00:21:03.200 Yeah, I think you know, there's some really clear takeaway messages, Evan, and I think they're really important because I think looking after yourself and caring for yourself is huge in this because this isn't changing overnight. 00:21:03.200 --> 00:21:05.279 This change isn't happening tomorrow morning. 00:21:05.279 --> 00:21:09.200 It's a change that's going to take a little bit of time to work our way through. 00:21:09.200 --> 00:21:15.359 I think the things that we're talking about is co-design, what these changes look like is going to be really important. 00:21:15.359 --> 00:21:21.039 And I think when people are feeling anxious and feeling stressed, it's maybe how can we lean into that space? 00:21:21.039 --> 00:21:26.240 We'll certainly be advocating for safeguards to ensure that people don't fall through service gaps. 00:21:26.240 --> 00:21:27.519 That's really, really important. 00:21:27.519 --> 00:21:30.000 As an organization, we're really passionate about that. 00:21:30.160 --> 00:21:30.400 Yeah. 00:21:30.640 --> 00:21:38.559 You know, um and obviously as an organization, we we continue to be here to provide supports, work with people and families. 00:21:38.559 --> 00:21:44.559 And I think this is the start of many conversations that we we will keep having about these changes. 00:21:44.559 --> 00:21:49.359 But I I think you've given some really great practical advice, Ev, for people. 00:21:49.359 --> 00:21:54.559 And and we'll certainly put some links in the show notes as well for people to actually have a look at. 00:21:54.559 --> 00:21:59.680 And if you're comfortable, Eve, it would be great to come back and have you know another conversation, especially I think around the dooms. 00:21:59.680 --> 00:22:09.119 scrolling piece, which I think can be really, really difficult as we continue to talk about, you know, how to navigate such big change. 00:22:09.119 --> 00:22:14.400 I don't know if you had any closing comments, Ed, that you might like to give to some of our listeners about self-care. 00:22:14.640 --> 00:22:14.880 Yeah. 00:22:14.880 --> 00:22:38.319 I think you wrapped it up well, Corinda, I think what ultimately I would like to reaffirm or reassure people is that you're not in this alone and that self-care, whilst it's focused on the self and your care, you don't have to do that by yourself and that we are there and and everyone has sort of different roles or different skills or experience. 00:22:38.319 --> 00:22:50.559 But the very nature of of the work that we do is that we don't want anyone to ever feel like they are alone and yeah to reach out and yeah we can support where we can. 00:22:50.559 --> 00:22:52.559 Thanks so much for your time Ev. 00:22:54.079 --> 00:22:59.920 You've been listening to Get Real talking mental health and disability brought to you by the team at Irma365. 00:22:59.920 --> 00:23:05.599 Get Real is produced and presented by Emily Webb with Karenza Louis Smith and special guests. 00:23:05.599 --> 00:23:08.319 Thanks for listening and we'll see you next time.

Edit transcript