NDIS Changes Part 2: Self care amid the uncertainty

This is part 2 of our episodes on the changes to the NDIS. 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. 

Sharing his thoughts is Shane Clifton, an Associate Professor at the University of Sydney and Director of Centre for Disability Research and Policy. Shane is also an NDIS participant – he lives with spinal cord injury – and he is a board member of The Disability Trust. 

You'll also hear from Evelyn Ireland - a psychologist, a behaviour support practitioner and general manager of The Disability Trust’s Clinical Services.

If you haven’t already, go to Part 1 which is a conversation with National Disability Services (NDS) CEO Michael Perusco.

MORE INFO

Information on the proposed reforms to the NDIS (Australian Government)

NDS's Wellbeing Program for NDIS Support Workers

The NDIS belongs to us. We fought for it. We sustain it. We’ll protect it. (PWDA).

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Transcript

Acknowledgement Of Country

Speaker 7 0:00

Get Real is recorded on the unceded lands of the Boonerong and Warunjury peoples of the Kulan Nation. We acknowledge and pay our respects to their elders, past and present. 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.

Speaker 1 0:28

Welcome to GetReal, talking mental health and disability. Brought to you by the team at NAMA365.

Speaker 0:34

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.

Speaker 2 0:48

We recognize people with lived experience of mental impact and disability, as well as their families and parents. 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.

Shane Clifton On Fear And Fairness

Emily Webb 1:09

Welcome to Get Real, Talking Mental Health and Disability. I'm Emily Webb. This is part two of our episodes on the changes to Australia's NDIS, which is the National Disability Insurance Scheme. 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. 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. 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. Shane is also an NDIS participant. He lives with spinal cord injury and he is a board member of the Disability Trust.

Shane Clifton 2:14

This week is the culmination of a long period of challenge for people with disability. I lived experienced person with disability, as I've got many friends and colleagues who have lived experienced. And for the last at least a year, maybe longer. The the press, particularly certain portions of the press, as well as as the public have been waging a relentless campaign against the NDIS. I had a spinal cut injury. I've lived with spinal crit injury since 2010. And so I indeed quite substantial support. So I'm I'm really not just speaking on my own behalf, but recognising the anxiety distressing an unlucky. I recognize that the screen needs to change. We need a sustainable screen. We need a public support. 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. And I'm not an expert on who should or shouldn't be on this game. What I do know is that and Mr. 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. And when they got on the scheme, it transformed their lives and made a huge difference for them. 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? 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? And I'm not easily convinced that those mechanisms are in place here for the people who come off the scheme. 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? It's a difficult time for people with disability that is official. People say it is welfare. People don't like welfare changes today. It's not welfare. You know, we're not paying cash. It's the provision of support. And yeah, it's really distressing to see the way in which the community has responded to it, to be frank. Yeah. I've been through these changes on a lot in the last 58 years. Unfortunate, you know, I'm an academic with a reasonable summary. I've got a spinal cord injury. I'm not one of the ones likely to be kicked off this game. So my concern really isn't about myself. That's not determined to say crazy button. It's just that I think the more vulnerable parts of the population and those with a less obvious and less visible disability are likely to be doing it much tougher than I am at the moment. I think the key is this is going to be a difficult time. Let's allow ourselves to be angry, to complain, to cry, whatever you need to do. Reach out to one another in support is, I think, the key. And so you know, reach out to if you're with a disability trust, to your support workers and to your peers. 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. And hopefully that will be the case for people with disability during the next few months and years as we go through these changes.

Self-Care In A Murky System

Speaker 6 7:09

Now let's go to our conversation about self-care amid this time of uncertainty. 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. Ev, there's been a lot of changes, a lot of news about the NDIS. 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. How's it been? Yeah, look, I think it is really difficult.

Evelyn Ireland 7:52

As you said, the the uncertainty I think is a very difficult landscape for us to all be in. Merkey is a really great word for it. It's trying to lead people and work with people and provide some assurance and certainty in a time that feels very, very challenging. 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. And that is really it's a really challenging place to work in and to advocate for people.

Karenza Louis-Smith 8:30

I think what we're seeing is that these changes are really big. And as Emily said, there's not a lot of details. So, you know, with people are saying that they feel significant anxiety, you know, there's a lack of trust. What does this mean? And I think I'm really keen to think about when things feel really difficult and there are no answers. How can you look after yourself when everything feels a bit scary? You're worried about will my supports change? Will the supports for my son or my daughter change? What does that mean for my plan? And there aren't any answers, you know. So people aren't going to have the answers to that yet. And for some people, there'll be no changes, other people there might be some changes, they might be small, they might be bigger. But I think the thing is people are sitting not knowing what they are. How can people look after themselves in this time?

Spotting Stress And Early Warning Signs

Speaker 5 9:20

It's a really important conversation. I think I would start with having an understanding that these stressful events and this has a significant impact. Stress has a significant impact on people, and being attuned to or understanding how that impacts you yourself. So learning some of those early warning signs or an understanding of your own nervous system or how that impacts you. 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. 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.

Speaker 4 10:08

That's hard, isn't it? 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. I think that's a really important thing, isn't it? So do you you notice those things? What are the sorts of things that people should look for? 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.

Self-Care Without Adding More Tasks

Speaker 5 10:32

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. 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. 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? 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? It can feel like a real burden. 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? What are some of those things that might creep in? 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. Some of these things can serve us or not serve us. So it might be, yeah, what are the things that we can take away? 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? 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.

Speaker 4 12:25

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? You know, everything is negative. You jump on, you're reading commentary, you're seeing the things that people say, you're reading the words cuts, cuts, cuts. Yeah, feeds it feeds the anxiety, doesn't it? It feeds the fear, it feeds the worry.

Speaker 5 12:46

It absolutely does. And it's a really I could have a whole session talking about social media. 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. 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. 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. 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. 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.

Speaker 4 13:51

So you're sort of saying first find the time to notice that that these things are happening to you. What advice would you give, you know, to our listeners? What are the things that you can do to start to notice? So if we go right back to the beginning, first thing, are you being stressed? Is this having an impact? Let's notice yourself what's going on.

Build A Simple Self-Care Plan

Speaker 5 14:12

A really important component of this is preparation. 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. So it's that preparation. I think that we, for those of us that cook, I'm trying to find an appropriate analogy. You know, we follow a recipe. If we go to the gym, we're following a program. Our self-care and our own maintenance shouldn't be any different to that. 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? 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. 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. But yeah, I guess having those close relationships where people can can help show that mirror a little bit to us.

First Aid For Overwhelm

Speaker 4 15:28

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. 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?

Speaker 5 16:03

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. 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. They are all like immediate things, immediate sort of first aid strategies. I think another really important part of the discourse around self-care is that self-care strategies can actually be quite boring. It's not all bubble baths and yoga classes and why I'd like the idea of nice.

Speaker 4 16:49

Don't worry.

Advocacy As Care And Community Support

Speaker 5 16:50

Don't worry, Crunchy, they can also be part of it. I do mention, sorry, yeah, bubble baths have gotten a bit of a bad rap from me, this conversation. They are important. I do like them myself, but it can be about meal prepping. 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. So I think to not necessarily feeling in that first aid moment, Karenza, that oh my gosh, I have forgotten my meditation. I need to add something on. It is really about what is something that I can do right now that soothes my nervous system. It might be playing Candy Crush for 15 minutes, it might be going for a walk, it might be sitting outside phoning a friend. 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. 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. 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.

Speaker 6 18:14

Yeah, I was gonna ask about advocacy because often people can get such a heightened feeling and they can get really fatigued. 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. 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. 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? Am I gonna lose some of my funding? 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. 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.

Speaker 5 19:21

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. 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. 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. And like anything, it's a balance. We certainly, uh, you know, I say advocacy as a form of of care if writing those things down helps you. 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. I certainly want to be part of a country that that values people with disability.

Speaker 6 20:49

Me too.

Speaker 4 20:49

Corenzo, any final thoughts? 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. This change isn't happening tomorrow morning. It's a change that's going to take a little bit of time to work our way through. I think the things that we're talking about is co-design, what these changes look like is going to be really important. And I think when people are feeling anxious and feeling stressed, it's maybe how can we lean into that space? We'll certainly be advocating for safeguards to ensure that people don't fall through service gaps. That's really, really important. As an organization, we're really passionate about that.

Speaker 5 21:30

Yeah.

Speaker 4 21:30

You know, um and obviously as an organization, we we continue to be here to provide supports, work with people and families. And I think this is the start of many conversations that we we will keep having about these changes. But I I think you've given some really great practical advice, Ev, for people. And and we'll certainly put some links in the show notes as well for people to actually have a look at. 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. scrolling piece, which I think can be really, really difficult as we continue to talk about, you know, how to navigate such big change. 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.

Speaker 5 22:14

Yeah. 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. 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. Thanks so much for your time Ev.

Speaker 1 22:54

You've been listening to Get Real talking mental health and disability brought to you by the team at Irma365. Get Real is produced and presented by Emily Webb with Karenza Louis Smith and special guests. Thanks for listening and we'll see you next time.