TRANSCRIPT

Reasonable and Necessary with Dr George: Making Sense of the NDIS podcast

Series 4 – Staying safe during COVID-19

EPISODE 3: 16 APRIL 2020

Q: Hi, listeners, and welcome to our Coronavirus series of Reasonable and Necessary.

I’m your host, Dr George Taleporos, and I’m from the Summer Foundation.

We all have a role to play in getting through this pandemic - wash your hands, don’t touch your face, stay at home.

These are things that we all need to do. On top of that, we need to work out how to get the support that we need in the way that is safe.

We don’t have all the answers, but we are here to help you through it.

Please remember that we can’t provide medical advice, talk to your doctor for that, or call the National Coronavirus Info Line on 1800 020 080 or visit health.gov.au

On today’s podcast, we’re talking to support coordinator and disability rights activist Kelly Cox about how she is preparing herself, her organisation and her clients for the Coronavirus pandemic.

Kelly’s organisation took action early and implemented some innovative changes to keep both staff and clients safe.
This interview was recorded on 28 March when the situation started getting serious in Australia.

Joining me now is Kelly Cox, a support coordinator for Karina and Co based in northern New South Wales. She’s one of the key people responsible for the organisation’s Coronavirus pandemic response.

She’s also part of the admin team for the hugely popular Facebook group NDIS Grass Roots and to top it all off, Kelly is a wheelchair user and an NDIS participant. Welcome to the show, Kelly. How are you going?

A: Hi, George, thanks for having me. How am I going - that’s such a big question at the moment that I’m not sure how to answer it. It’s scary times, there are a lot of things going on for a lot of people and a lot of things we don’t know what’s going to happen or how things are going to happen, so scared, I think to summarise all of that, I’m worried and I’m scared and I’m not sure what the future holds.

Q: It’s a very unsettling time for a lot of us, especially if you have a disability and if you rely on other people for support. Now I’m really interested in hearing about your organisation and what you have done as a service to prepare yourselves for the pandemic.

A: Yep, so we feel like we’re as prepared as we could be, we’ve been monitoring and watching and having conversations since the outbreak in China about what we assume that was going to happen in Australia, so we’ve been talking probably since January about how are we going to manage this and support people and what will happen. So what that looked like for us on a practical sense is lots of mapping out the people who we provide support coordination for, looking at how many different providers does that person use and what activities do they do and what parts of the community are they involved in and kind of looking at the risk levels for all of those things. So we know lots of disabled people go 10 pin bowling each week, so that was one of the things where we went, that’s feeling a little bit more gross now because you’ve got balls that lots of people are touching, so looking at that stuff so that when it became time to progress through our pandemic plan where we started talking to people and recommending that maybe let’s look at other activities, we were ready and we’d thought about that.

In a practical sense, we’ve made contact with people who we know use consumables, so continence products or feeding products or sleep apnoea masks or anything like that, where people might need to regularly make orders and we recommended that why don’t we put an order in early. How much stock have you got now? How long will that last and if it was something that in a month or 6 weeks, they were going to need to order again, we said, well, let’s put the order in a little bit early to make sure that you’ve got that supply because we anticipated that there would be international supply disruptions and I think we’re seeing that now and that combined with perhaps some panic buying and people stocking up, so it’s becoming quite tricky for people to buy those products. Certainly 6 weeks ago, we were recommending that people do that and that has been a really helpful thing for the people who we support and hopefully will avoid one aspect of the stress of the many struggles that we’re experiencing and are about to experience over the coming months.

Q: That’s a couple of things there, Kelly, you talked about risk and looking at people’s risk and you also talked about supplies and also looking at the activities that people are doing in terms of risk and I’m interested in maybe breaking that down a bit. So when it comes to being a support coordinator, and there are probably a few support coordinators listening, what do you think people need to be doing differently or better when it comes to looking at risk and planning in terms of risk?

A: We’re quite small, so we I think have a certain level of privilege where we’ve got really good relationships with all the people who we work with and we know their lives quite well because we built those relationships and we’re a small town, so often people know each other regardless of whether you work with someone or not. So looking at individual people and talking to them about are you still working or studying or do you still go to the Men’s Shed or whatever it is that they might be involved in, so then looking at each one of those things individually, so somebody volunteered at a particular place, so we’d look at what happens in that location, what safety precautions is that particular place or organisation, what have they got in place and are they talking about social distancing and are they changing their practices and from there, you’ve just got to kind of feel your way through it, I think.

A couple of weeks ago, it was probably not as a big a risk to do some things that as we see particularly in New South Wales, we’ve got so many confirmed cases here that I think the risk just increases daily and terrifyingly, so looking at where if somebody is doing group based supports and it looks like it might be something that’s in a higher risk category, are there alternatives to that? Well, talking to people and helping them understand what is going on and what Coronavirus is and what that might mean for them and the wider community because we want people to be safe and safety precautions for themselves, but also the people around them, that we’re not unnecessarily contributing to people being exposed unnecessarily and then offering alternative support. So would you like us to talk to your provider about rather than going to the day program or to bowling or whatever the group-based thing it might be about how about some one-on-one support when we go and do something that’s a little bit safer and that doesn’t necessarily have to be alone, it might be with a friend, but yeah, just minimising that risk wherever possible. Not do large group activities in unsafe environments, but making sure that people don’t lose out in the support in the process. I don’t think anybody at the moment wants to see anybody lose support, I think it’s just around helping people make informed choices about risk and what those activities are and work to keep everybody as safe as possible.

Q: I think that’s really useful advice in terms of looking for alternatives. I’d like to pick up on what you said there about people who might be at risk of losing support and I’m talking about that in a context of a workforce where people may no longer feel safe providing services or they may feel unwell and not be able to come in to work, what are support coordinators needing to do to respond to this?

A: It’s a really tricky question.

Q: I know, it’s why I’m asking it.

A: Yeah, because as we all probably know, there’s not a lot of guidance coming in either from the government or the NDIA or NDIS or any of the places where we might expect to be getting guidance, even around things like what is essential versus non-essential disability support because people might think that sometimes that’s really easy, let’s just cancel all the social support because that’s non-essential, that’s, it doesn’t relate to keeping people alive, but actually, in some cases, if you remove that social support where there is a social support worker or a mentor or somebody helping somebody to make safe choices and informed choices about what should we do today, the risk is that people will jump in a taxi or they’ll walk down to the shopping centre or the movie theatre on their own because they’re bored and at home and they’re sick of being locked up at home. So people need to be really thinking about the consequences of if a service provider decides that social support is no longer an essential support, what might that mean for some people because we’re certainly worried about that. People who can leave their house independently and jump in a taxi and go and visit a friend, they’re actually more at risk when you remove that support, so that’s one thing that we are certainly talking to people about and looking at the alternatives.

So if a support person cancels because they’ve decided not to work any more because they’re not feeling safe or they’re at increased risk or have a family member at increased risk, which is really common in the disability sector, there are a lot of carers who work in the sector and there are a lot of disabled people, not quite enough, but we’re here and we’re working in the sector so there are a lot of people who are at increased risk to the impact of Coronavirus so because of that, I’ve noticed a reduction in the people who are available to provide support and I get really conflicted around what is the best way forward with that. Again, we’re a small area, so there are lots of relationships and providers know each other, so it’s possible to find which other provider is doing good work and are taking all the safety precautions that they should be taking at this time and which ones aren’t very importantly and connecting people with those, wherever that’s a possibility and then looking at maybe the irregular support where there are maybe some contractors and sole traders who might be able to do a trip to the supermarket.

We as an organisation, in addition to support coordination, we also provide some direct services, that’s been a bit of a benefit in this current situation because people who might be having trouble, perhaps are using a different service provider who the worker said, I can’t take you to the shops any more because I don’t feel safe at the shopping centre, which I understand that. We’ve introduced a program where we have a dedicated person who goes shopping 3 times a week and who will deliver food to people’s doors, so we don’t have multiple staff members in and out of the shopping centre and people who are feeling fearful of those high risk environments also don’t need to go to the shops if they don’t want to either, they can just get it delivered to their door which has been really successful, given the issues that we’re having with Woolworths and Coles deliveries and being seven o’clock in the morning time slot where you’re supposed to be able to get to the supermarket where we know that that’s not possible for a lot of people and tricky for those who can do it.

Q: That’s a really responsive initiative and I commend it, and did you know that there are some support coordinators who have recently been saying or thinking, hang on, that’s not my job, I’m not a courier, why would they do that?

A: Yeah, so those support coordinators could absolutely be looking for the providers who would be doing that stuff, though, so one of the things that I’ve very keenly been doing is every time I see an email come in to my inbox from another provider or somebody who I support, so if I got an email from such and such a provider, I’d say, would you mind forwarding that to me so that I’ve got a good feel for what’s going on in the local area and what are different providers doing to be adaptive to the current situation to make sure that support continues as much as possible and that people are kept safe as much as possible and including staff because the last thing that we need is support workers to all get sick because we’ve sent them all to the shopping centres because we’re the ones who will suffer for that, we won’t have the staff availability that we need to continue doing the really essential things that keep us alive.

Q: Yeah, and I think that’s really important because this isn’t like anything we’ve experienced before and with all the rules in place, they’re in place in a different kind of situation. Suddenly, we need to look at those rules and say, well, maybe some of those rules need to be looked at from a risk perspective and if you are able to support someone to survive through the pandemic, then maybe we can do things a little bit differently.

A: Yeah, absolutely. So do people need to be going to the supermarket, and we’ve also got to keep in mind that so many people with a disability do live in poverty and below the poverty line, so being able to do a grocery shop that will last you a few weeks just to stock as per the advice, it’s just not possible, so often, people might go to the shop multiple times a week to buy just the bare essentials that they need at that time, so everybody, no matter who they are has to change their habits and the way that they live right now. And that becomes even more complicated when you start factoring in other layers like poverty and disability and your ability to access transport or to access the support that you need, it starts getting really complicated, so as support coordinators, we really need to be thinking through as much as possible with those scenarios.

I think that again I have an advantage because I’m a wheelchair user, so I experience all those barriers myself, so every time I hit a barrier, I kind of go, all right, let’s apply this situation to different people and different kinds of disabilities and see what solutions might be possible for that. But for people who don’t have that lived experience, I think that sharing information and sharing resources right now is really important, so I certainly have been sharing ideas and things that we’re doing on line at the moment, we also shared our complete organisation pandemic plan to any organisations who could use that to build their own. We know that Sam Paior at the Growing Space is sharing lots of things all the time, so that resource sharing amongst other providers, it’s not the time to be competitive and worry about your intellectual property and worry that somebody’s going to take your idea and make it their own, now is the time for all of those things to happen and hopefully by doing that, we literally save lives because that’s what we’re trying to do right now, we’re an incredibly high risk group for the virus and the severity of the symptoms, but also at the peak of this, whether or not we’ll get medical treatment. So I think that if support coordinators and providers and the sector as a whole thought about it in terms of that we are trying to save lives then hopefully, that works and that is something that we collectively do as a sector.

Q: Can we talk about that, Kelly? Can we talk about that? We talk about prevention, but I’d like to talk about what happens if you do come in to contact or become infected with Coronavirus. We know that the health system has historically been challenged, to put it in a nice way, by people with disabilities. What do you think support coordinators need to be doing now in order to prepare people who may end up being infected?

A: Again, it’s so hard to know the answers, with any clarity to any of the situations. One of the things that as an individual I intend to do and something that I mention people do online is to have a one pager of information which might be some of your medical history, what your diagnoses are, what medication you take and what for and at what frequency and one of things, and it’s really heartbreaking to even suggest that people do it, but I’ve also said at the bottom, write some stuff about you and remind the medical profession, it might be looking at your humanity, that you are a son or a brother or a sister or a daughter or a parent or this is what you do for work or you’ve got dogs at home who are dependent on you and children, whatever it might be that reminds those people that people with a disability, we are people, we do live full lives and our lives are valuable and as valuable as anybody else’s.

When you’re putting together that crucial information, just put something at the bottom that reminds people that you’re just as worthy as anybody else of equal treatment which is, like I said, is a heartbreaking thing to even be suggesting to people, but I don’t know what else we can do in the event that we end up in situations like Italy where they’re having to make decisions around things like whose life holds more value. Historically, I rock up to the hospital and they a wheelchair user and it might be all that they see about me, they don’t see the 15-year-old child at home and the pets and the husband and the job and all the people who I support as part of my work and the fullness of my life and if we apply that to everybody and the importance of their lives for them and for the people around them, how do we convey that to people who might not know - they only see us as a diagnosis?

Q: And do you think that people can also talk to their GP or specialist now and say, let’s think about the worst-case scenario, what things might I need to prepare for or think about?

A: Absolutely, I think if people can get appointments with their GP, I’m personally having trouble with that on a local level, our GP has closed their doors and they are flat out with Telehealth, so for us in my house, and my husband’s also a wheelchair user, we’re having lots of trouble right now, even getting basic medical care. I asked for a referral for my husband to community nursing, he’s a paraplegic who unfortunately has an open pressure wound at the moment, and the GP told me, go to the emergency room, but I said, but it’s not an emergency, this is something that we deal with all the time as disabled people, we need a referral to community nursing. So there are already some barriers that I’m seeing in accessing just regular day-to-day health care which really worries me about what might be coming, but absolutely, people who have got good GPs and specialists to absolutely be having conversations with them around what they could be doing personally to reduce their risk and that might be reviewing what medication they’re on and the irony of those medications are likely to make them more susceptible to severe impact if they are exposed to Coronavirus. It might be what do the hospital staff need to know so for people with, I’ve got muscular dystrophy, so anaesthetic can often be an issue for people with at least my specific type of muscular dystrophy.

So all of that information and having that on that one pager, like please don’t give me this type of anaesthetic or please monitor my oxygen levels, people with my diagnosis are more prone to retaining whatever it might be for each individual to have that information to know it, be familiar with it, lots of disabled people and I think it’s maybe more of people with a physical disability. We don’t get too focused on the medical stuff, so maybe learning a little about that, going on to the Muscular Dystrophy Association pages and see what they’re saying muscular dystrophy and Coronavirus or spinal cord injury and Coronavirus or Down Syndrome and Coronavirus, finding out what the impact might be on any particular person and certainly as support coordinators, we could be looking at that information as well and making sure that the people who we support have got access and know the increased risk for their particular diagnostic group.

We know now that people with diabetes are at a really high risk, there’s a really high mortality rate for people with diabetes which I wouldn’t have thought in the early days, so knowing as a support coordinator as much as possible and if you don’t know, have conversations with people, are you diabetic? Do you have any heart conditions? Are you on medication for this, and helping people work through calmly and in an organised way to get all the information that they need to know for now and like you said, if you get down the track and somebody has to go to hospital that they’ve got all the information that those medical staff will need to be able to provide efficient and timely medical care.

Q: That’s really good advice and I think that the most important thing is that people do talk to the medical people in their life, but also their family, friends and support workers and that everyone sits down together with the appropriate social distancing and works out a plan with the person.

A: Yep, absolutely and advanced cancer actives have lots of people maybe have avoided, it might be conversations that they’ve had with family or support people or friends, but do you have something written down about what you might want the end of your life to look like? Wills, all of that kind of thing where I think that perhaps that is a role, although it’s not a support coordinator’s job to help somebody write their Will, but certainly prompting people and helping them identify where to get assistance or information about that, where to find it.

Q: Can you talk about people with cognitive disabilities or intellectual disability? I assume you have some plans and those sorts of impairments and what do you see as the main struggles or issues and how can support coordinators help people though that because I imagine that it would be very difficult for someone. A lot of this information is very complicated and there’s information in Easy English or an accessible format, what can support coordinators do?

A: I think communicating in the way, again, hopefully, they know the people who they support and they’ve identified and built relationships based on people’s particular communication styles and preferences, we know that Sam Paior has created her English version of Coronavirus and what it is. There’s a social story at the moment and I can’t remember who it was who produced that, but I certainly can find it and send you a link, so there’s a social story about it. I think really practical things so one of the things when we’ve been talking to people about hand washing, and we know wash your hands for 20 seconds is the recommended advice, so we come up with things that are equal to 20 seconds, so sing Happy Birthday twice or we might identify that someone we work with is a massive fan of a particular song, so we might find the chorus of that song and how long does that go for and is that 20 seconds? Things like that that are a little bit fun and easy for people to remember, but that also help them change their behaviour and new practices and sometimes it’s really hard. I was talking to a mum the other day about her young son who has autism and one of his stims is actually to rub his hand on his nose, so for her, she said there’s absolutely no way that we’re going to be able to get him to change his behaviour and stop him doing that and that will be the reality in some cases, that people won’t be able to change behaviour because of their disability or because they’ve just been doing it, it’s really hard to stop touching your face and I can’t even lift my arms up very well and I realise that I do it a hell of a lot.

Q: I’m lucky, I don’t have that problem, I never touch my face unless my hands fall on my face.

A: Check your reference George. Again, that’s people around those people taking those extra safety precautions and again, that’s not a support coordinator’s direct job, but absolutely support coordinators right now could be talking to support workers and family members. We know that Disability Services Consulting released that training and the Department of Health have also now released specific training, so sharing that with people, with family members and with support staff perhaps particularly contractors who might not be getting the advice from the NDIS and know that you can go on the website, actually support workers as well from organisations because we don’t know that management are feeding down information in the way that they need to be, so if somebody’s being supported by their support worker and a support coordinator happens to be in contact with them, check in with the support worker, what’s going on at your workplace? Do you feel safe? Do you realise that the person who you’re supporting has increased risk? If you’ve got consent to share that kind of information, to make sure that everybody knows as much as possible what the risk is for people and how to decrease that as much as possible and just changing their behaviour.

I think one of the things that really worries me at the moment is you might have people who are doing all the right things at work and taking all those precautions, but perhaps when they’re not at work, they’re not being as safe, so they might still be going to places that are quite crowded, so that worries me, so we certainly as an organisation have spoken to and we’ve got 4 support coordinators on our team, so we’ve had discussions with them around what are you doing in your spare time and that probably feels really unfair that we’re now intruding in to people’s personal lives, but that’s the only way we keep people safe. We all talk about what we’re doing and what might be a risk and getting other people’s perspectives to realise what might be increasing risk for the people around us and ourselves.

Q: It’s a very different world, isn’t it and I was thinking also that the whole concept of social and economic participation and we were all about people being out in the community and then suddenly, it’s all about coming back inside. But I guess in the meantime, while this is happening, we need to find other ways of connecting to community. Do you have any suggestions on how people can do that? Obviously, there’s the internet, but you’re very much users at all, do you have any other ideas?

A: I think the internet, I think getting outside, everybody in my household at the moment, today is our one-week anniversary that we have not interacted with a person outside because we all left the house last Saturday. I’ve been working from home for a couple of weeks, but would still pop to the shops quickly and my husband was still working and my son was still going to school, so it’s our one-week anniversary today of not interacting with anybody else other than online. Going outside, I took the dog for a walk this morning with, I’ve got a support worker living with me and I realised that it had actually been a week since I’ve been in to an open space like that, I’d been outside into our tiny back yard, but yeah, people were working in the driveway or the garden and kind of waving to the neighbours, so even just that tiny little bit of connection and a reminder that there is still a world outside of your 4 walls, you can’t interact with it in the way that you used to at this point in time, but doing that, going and connecting with the things that you might normally do. We’re a coastal town so we’ve got some beautiful beaches and we’ve got waterfalls and bush walks and I think it’s an opportunity for people to maybe look at what’s available and obviously, I’m not doing bush walks or waterfall climbs, what is in your area that you can connect with that you maybe haven’t before? What are the new opportunities that might be found in this situation and what can you learn about in the local community which might then be something that you can then discuss online? It might be information sharing about did you know that this is the history for the Aboriginal people in our local area and I learnt that because I went walked along the footpath and saw the signs of the cultural stories that we got that in our area, but lots of places probably have things that we don’t know about that will then give us things to talk about because yes, we can all communicate online, but we kind of run out of things to talk about if we’re just stuck in our house. I watched the dog chase its tail again today. I think that and again, for support coordinators helping, I’ve certainly over the last week or 2 as I’ve been working at home, I’ve been coming up with what’s a list of things that people could do that are outside of their house. Activities that are not at risk, I’ve gone through the garage so I’ve realised that we’ve got a kite in the garage, so I’ve given some of that kind of stuff to my workplace to go, well, maybe someone wants to fly a kite because that’s something different that we don’t usually think about doing and collecting shells on the beach or rocks to maybe do some art work and yeah, as support coordinators, we should be helping people to come up with alternative activities that are much less at risk and then the essential things like grocery shopping and that type of stuff as much as possible reducing the need for people to do that stuff.

Q: I’ve decided that I’m going to learn how to fly a plane on my computer, so using a flight simulator, these are things that I’ve never had any time to do, these are things that you just think about. What are things that you’ve never had time to do - all of a sudden, we’re going to have a lot more time because we’re in this together. Make a list what are your interests and go for it, talk to other people.

A: Yeah, audio books, I downloaded Audible almost 12 months ago now and I pay the subscription every month and I get a free book with my subscription, I haven’t completed one of them, so this is quite good, I might actually get to finish one of those books. I couldn’t hold a book and turn the pages, so yeah, audio books are something I’m quite looking forward to actually. My work stuff is pretty full on at the moment as is everyone’s I imagine while we’re trying to organised, we’re also doing things like we’re pre-empting government shut downs and what that looks like for people. We’ve had a staff member go and install Zoom on people who were interested devices and give them lessons on how to use Zoom, so we would do a lot of Zoom based stuff for support coordination and also some group based stuff, so that people who are friends and would usually connect with each other face-to-face can do that as a group online and have group chats about whatever it is that we’re doing and telling silly jokes or how many times a dog chases its tail or that stuff, really thinking about that stuff and support coordinators could be helping people to get through that stuff and connect that with it.

Q: And I feel like at some point, through this, we’re all going to work out the true meaning of life where this is a time when we’re going to work out why we’re here, what are we doing here and sometimes navel gazing, there’s a lot of time for it, let’s put that time to good use. Before we wrap up, Kelly, I just want to ask all of my guests who have disabilities about what they’re personally doing in their lives to reduce the risk of Coronavirus, do you want to briefly talk to us about what you’ve done?

A: Yeah, sure. Two weeks, ago, I had so much anxiety, I had multiple people coming and going from my house, sometimes multiple people in one day at least one person each day and I had so much anxiety, I just couldn’t figure out how to keep myself safe, even though these were support workers. One of them I’ve had for almost 10 years coming and going from my house and I trust and I know that they were washing their hands and doing all the right things, but there was an element of risk that was just not within their control and my control and that’s that they’re going in and out of people’s houses and to the shops and whatever else, so I had a family meeting and I decided that I wanted to cancel everybody from coming and moved to somebody in permanently. So we now have a support worker as I say one week today who moved in with us and is in isolation with us for the whole duration, she’s being paid by my NDIS funding, so I’ve cancelled the other supports and I’m now paying her to run the household essentially and all the domestic stuff, any personal support that I need, if my husband needs some, she’ll help with that as well, it’s had such a huge impact on reducing my anxiety, I actually feel like I’ve got some control over my life and whether I’ll survive.

Q: Kelly, I think it’s important for the people listening to realise that we all are going to have different ways of doing this, that there’s no right or wrong way, there are obviously some risks in the approach that you’re taking, what happens if the person who’s supporting you has a heart attack and dies or God knows, so I guess we all need to do what’s comfortable for us.

A: Absolutely, and I think that what we need to do is be talking to each other about what we’re doing, so what I’m doing won’t be possible or suitable for everybody, it’s working brilliantly for us, but that won’t be the case for everybody, but somebody else might be doing something that works really well for them and if they share what they’re doing, it might give somebody else, it’s information sharing, I think we’ve all got to share information and strategies at the moment to help each other think about what could I change and what can increase my safety and what will I do and that might be talking to your support workers and saying, well, how many other people’s houses are you in and out of and as organisations, I would hope that service providers are looking at that and limiting, we certainly remap for direct support in my work, our staffing to make sure that we haven’t got one staff member going to 6 different people’s houses because if any one of those 7 people contract Coronavirus, we then have to isolate every single one of those people until we know. So limiting risk as providers looking at minimising that risk, but also as individuals, as I say to people, having as much control over that process as we can and being as informed as we can so that we can make decisions that do the best to protect us.

A: I think that’s a great point to end on, thank you so much, Kelly for your time and I really want to wish you all the best and hopefully, we’ll see each other at the end of this.

A: I hope so, thanks for inviting me on to chat, it was good, stay safe, we’ll talk soon.

Q: Thanks, Kelly.

A: Thanks, George.

Q: That’s all we have time for on today’s episode of Reasonable and Necessary, brought to you by the Summer Foundation.

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