00:07S1
This is studio one on Vision Australia Radio.
00:29S2
Hello, I'm Matthew and I'm Sam, and this is Studio One, your weekly look at life from a low vision and blind point of view here on Vision Australia Radio on this week's show, Support workers.
00:42S3
I've got one is he has a team of ten. We discuss.
00:45S2
As we always say at this point, please do get in touch with the show. Whether you have experience of any of the issues covered in this episode of Studio One, or if you think there's something else we should be talking about, you never know. Your story and your insight may help somebody else who is dealing with something similar.
01:01S3
The best way is to email us Studio One at Business Australia. Org, that's studio one at Business Morgue.
01:08S1
This is studio one on Vision Australia radio.
01:14S2
Hello there Sam.
01:15S3
Hello there Matthew. Uh, how goes it, uh, on this, uh, we're out now. It's, uh, autumn on your side of the world, isn't it?
01:22S2
It's the bleak midwinter. It's very cold, and I'm loving every minute of it. Sam, you had, uh, Lizzie and Stephen into the studio yesterday. They're increasingly becoming an important part of this show. How was. How was your afternoon? How was your day?
01:37S3
It was a very productive. We had a nice little chat. Chat as, uh, the listeners will hear and, uh, we swap notes on one getting into the NDIS, which sometimes is a bit of a chore. And also, uh, yes, uh, dealing with, uh, getting a support worker in the first place and, uh, yes, uh, the platform we tend to use actually turns out to all be the same one, which, uh, also coincidentally sponsors this station. So, uh, a big thank you to Mabel for its, um, wonders and its, um, uh, limitations.
02:07S2
All right, let's take a step back. So, the NDIS, the National Disability Insurance Scheme, uh, it changed depending who you are between 7 and 5 years ago. The way that people receive sort of social support, social services. Uh, and what it meant is that, uh, individual people who, in our case, uh, live with a vision impairment, uh, we're able to select the services and service providers that they benefit from. Uh, this has been, uh, I think, Sam, the word is it's been broadly well received, but the admin is a bit of a nightmare. Would that be correct?
02:45S3
Yeah. And there are also some unexpected consequences, as you will find out in this interview, is that, uh, there are some strange things that are starting to happen when we move from a volunteer. Yeah, mainly a volunteer system to a professional one. It's become, uh, rather interesting, you might say. So.
03:04S2
Um, I don't think it's. I don't think it's going, uh, without our legal purview or, you know, upset the Vision Australia lawyers to say that there is a smell of corruption around some of it. There's certainly some abuse of the system that you have and I have come across. I would say anecdotally, everybody's got a story of, uh, you know, triple invoicing or people not turning up or, you know, people being forced to sign things that that attest to things that haven't really happened. Is that fair?
03:34S3
Oh, yeah. And there's been a whole, uh, royal commission that's now established that with, uh, the, uh, uh, various ministers responsible saying that they are working on actually trying to stop this from happening. So, yes, it's not controversial at all to say that corruption has got involved in the, uh, yeah, since 2013, when the, uh, scheme first got started.
03:53S2
All right. Let's go back again and again. Focus. So today's show is about support workers. Um, so basically the way, the way it was explained to me, Sam, is that there are certain things that some people with vision impairments need little help with, uh, and they can decide which ones they want help with. Uh, and these include things like cleaning, uh, getting somebody to drive you to the shops to do that. Support workers are employed and engaged. Uh, I noticed that you recently got one, but it took you a while. Why? Why didn't you do this earlier?
04:26S3
A lot was bureaucracy. Um, it's one of the problems with the NDIS is that it is a very bureaucratic system. And, uh, it there are sort of things you need to fill out properly and certain permissions you need to get. And I mean, to the point where, um, agencies like Mobil have, uh, been created to hopefully streamline things, but sometimes not necessarily it, uh, because uh, if um, in my case, uh, you have, uh, someone that's holding on to a pool of money and they don't, uh, confirm their details with that agency, then it takes another year or so before you can actually get somebody on board. So yes, it's become. Yeah. Each time they find a solution, somebody else finds another way of dragging the chain. It's been, uh. That's what really why it's taken so long with me. And, uh, now that I've actually got somebody, the, uh, the magnificently fantastic, uh, Megan, then, um. No, I'm not looking back. I mean, uh, my backyard has not looked better. The, uh, shed that I'm in, the process of, uh, renovating is, uh, starting to actually, uh. Come about really, really well because I've worked some shelves up there. It means that if I want something big, I don't have to lump it back from Bunnings or wherever on my back. And even, I mean, we went out to Harbour Town to do some just shopping to get some new clothes and stuff like that. And uh, so yeah, it's, uh, been a godsend. Really.
05:47S4
Hmm.
05:48S2
All right, well, let's, uh, listen to you and Lizzie having a chat about this. I believe her husband Steven joined you in the studio as well.
05:55S3
That's right. It was a very merry little chat. All right. So this week we are talking about the, uh, NDIS and uh, the uh, adventures we go through in order to get a simple service. Now, it's taken me quite some time to get a support worker, um, because of various things. Uh, when did you guys first apply to become part of the scheme? And how long does it take for you to actually get any benefit from it?
06:25S5
Well, I applied for the NDIS in 2017 and became a participant in October of 2017. Uh, however, I think it must have been two years before I actually used any of my funding to get a support worker, and the very first support worker I hired was through a an organisation who dealt with community support. And the support worker came to my house once to do a cleaning shift and kept billing me for six months more of cleaning shifts, even though they weren't turning up. So my first couple of support workers that I had were a bit dodgy at best.
07:07S3
What services do you use at the moment anyway? So do you have just the one support worker or do you, have you?
07:13S5
I have two at the moment. Uh, two long standing ones. I have Chris and I've been working with Chris since April of 2020, and he is my physical trainer. He does my gym stuff, we go for long walks, but mostly he spots me in the gym when I do my weights and he writes my programs and he, you know, just make sure that I'm safe. And he takes.
07:38S6
Us out for lunch.
07:39S5
Yeah, he does. Takes us out to lunch as well. Well, he doesn't pay for it. But, you know, he recommends all the good places. But having Chris also means that I've been able to participate in gym classes. So, uh, just this morning, I did core and cardio, and that wouldn't be possible without a support worker to, uh, tell me what everybody else is doing and what I should be doing. I've also got Meegan, who I've been working with since February of last year. She started out as a cleaner, but we actually rode tandems together a couple of times, and we do a lot of hiking and walking and chatting and going out to coffee.
08:17S3
So it sounds like a lot of these things would be the sort of thing you'd normally get a friend or a member of your family or something like that to do. What's the big difference you've found in actually paying somebody?
08:29S5
Well, there's an obligation on their side to actually do what you want to do. So the family or friends, sure, you can go out and do the same things, but if your family or friend doesn't want to do it for whatever reason, they're not beholden to you to do it. They can pull out or say, no, I don't want to do this part, or I don't feel like it today. But when you're with a support worker, they're paid to do what you need them to do.
08:52S6
Not to mention with family or friends, you're sort of on their time and they'll they'll rock up whenever they feel like it. Some of them can be like that, but with when you're booking somebody in from services such as Mabel or whatever else. Uh, your.
09:07S3
Sponsor, Mabel. That's right. Sorry. Station sponsor. Mabel, by the way. Okay.
09:12S6
Good. Um, sorry. Yeah, yeah. Caught me off guard, then. No, uh, you're there on your time. That's what I'm trying to say. So, yeah, you can make the most of your own time with support workers rather than family and friends.
09:28S5
Not only that, but I find that you can get a sort of a routine going. Like with Chris and I, we do Monday and Thursday morning each week, uh, come rain or shine, that is the routine with Megan. It used to be Tuesday and Wednesday. Now it's it's down to Friday mornings. But again, come rain or shine, she will be there. She cleans for us one fortnight and then the, uh, one week of the fortnight. And then the next week we do something social, like a walk or do some shopping or run some errands, whatever we need to do. But either way, it's a scheduled thing for that week and you know what you're going to be doing and you know what time they're going to be there. And you can schedule the rest of your week around it. Whereas with family and friends, they might have work or kids or other commitments, and there's no basis for a routine.
10:14S6
And when you have a reliable source like that, a reliable worker with you, sometimes things can be flexible. So for instance, they can come with you, the Royal Adelaide Show or something like that. Whereas if you're trying to like get somebody from the family to do it, it's, it's, it's it's really tricky. But it's great to have that rapport with a support worker.
10:34S5
So Sam, why did it take you such a long time to get your support worker? What was the troubles that you had?
10:41S3
So I applied I believe it was about uh, 2000, about 2017 as well. And uh, uh, put in the application they wanted some more information, which I sent to them, but then they, then they sent me a letter saying, um, you haven't sent us that information. Therefore, we're cancelling your application. So I was back at the beginning and it took another six months to process. And when I finally got on, then you go, well, what next? The website is completely, uh, inappropriate for anyone with a disability, let alone anyone normal. And you really don't know where to start. So, uh, yes, I started, uh, with the plan manager. And the plan manager, Wren. Um, uh, workers who did some gardening. So I got somebody in to do that, but, um, I just need to get someone in once a month to, uh, just clean things up a little bit and tidy the edges and things like that. But they stuffed that up, and this person kept coming around every week, so I cancelled that. So, uh, then, uh, I, uh, signed up through. Yes, station sponsor Mabel. And, uh, they were waiting on their planet. The plan manager to confirm my details and to get back. And anyway, I've been doing a few other things, and I didn't know about that. So I called them about six months later and said, um, what's going on? And they explained, your plan manager hasn't got back to us. So, yes, uh, threatened to move plant managers and they confirmed the details overnight.
12:20S5
Funny how that works, because, um, previous to, uh, a couple of months back, I've been self-managed, so I've always found it quite easy to go onto, um, a platform like Mabel and look for a support worker to just get anything done. In fact, I posted a last minute job today just to get to the radio station, so, uh, that was kind of fun. But, um, now that I'm plan managed, it just seems that things move a lot slower. And because they're outside of your control, it's kind of more stressful, I find, because not only now do you have to worry about the workers that you have and and sorting that out and getting the right worker for you for the job. But then you have to worry about what is your plan manager going to pay this? What's what are their issues? What issues are they having with paying invoices. And, you know, it adds more stress to your plate rather than taking it away.
13:15S3
So you would would you suggest going back to being self-managed?
13:19S5
Yes, yes, if you can. Definitely. If you've got the skills to budget and to manage that budget over two years or one year or however long your plan goes for, I think self-managed is the best way to go. But luckily for us also, we've got a support coordinator who coordinates all of our services. Um, that'll be Collette. Yeah, she's brilliant and she will get on top of things really quickly for us. She's brilliant and she deals with a plan manager, and she's even, um, been on a few calls with support workers of ours just to to tee things up.
13:52S6
Yeah. She goes above and beyond their duties.
13:55S5
Absolutely. Yeah.
13:56S3
They seem to have got that right with the people that. Yeah, the area coordinators and such like they and a lot of them do actually seem to have disabilities themselves, which basically means that they are a bit more understanding of how things are limited.
14:10S5
Yeah, I find local area coordinators are quite difficult. Uh, it's been my experience in the past, not now, but in when I first started, I had a list of goals and things that I wanted to achieve. And my my local area coordinator at the time was the attitude was, well, no, you can't have that. You can't have this. And I've got a friend that's going through it. At the moment, she's, uh, classes having a psychosocial disability, and she wants to get all these goals into her plan, you know, and the, the local area coordinator saying, well, no, we're not going to help you to get that. And so it seems to me like some local area coordinators are taking more liberties than they ought to.
14:52S3
There's a bureaucratic nature there. And one of the other interesting things that, uh, we've noticed, uh, is, uh, well, on other shows that we've done is that, uh, the NDIS has a trouble with understanding that sometimes people have more than one disability. So you basically have to choose which disability you support, because if you are blind, then maybe you're not deaf, or maybe you don't have any, uh, uh, uh, mental problems or anything like that. It's uh, yes.
15:20S5
I think that's getting better, though, because I will disclose this quite happily. It's fine. I have bipolar type two, and we are going through the process of getting that recognised as a psychosocial disability because that comes with its own challenges. And believe me, challenge is the word to use. Um, and so we are looking at getting psychological support with cognitive behavioural therapy and things like that to help me manage it, because in the grip of the manic episodes or depressive episodes, it can be rather debilitating and disabling and it really impacts on my. Quality of life. And Stephen, if you if you want to.
16:03S6
Well I agree obviously with um, a lot of us do have other things other than just being blind. I have depression and anxiety and other certain things, PTSD and whatever else this cycle psychologist says I've got as well as, uh, borderline autistic and uh, people aren't. Some people are trained just to cope with, uh, the fact that you're blind but don't have other skills around that as well. And that's a stepping stone for us all, I suppose, to try to realize what what we need and try to figure out how to get the best benefits out of or best help out of NDIS, rather.
16:41S3
So, um, your initial application process, uh, to start out with, I mean, did you have any hurdles like I did.
16:49S5
Apart from having a reluctant local area coordinator who didn't understand why my goals were what they were? Um, not really, because I had the support of Guide Dogs SA and as well. So before the NDIS system came in, obviously a lot of the disability support was state funded and I had a case manager through Guide Dogs who helped me get onto the NDIS and pushed my application and uh, advocated for me with the local area coordinator and with the Ndia itself. And I found them to be quite helpful. I was really lucky in the sense that I literally went from being a state funded or getting state funded to support, straight to being on the NDIS.
17:34S3
Stephen.
17:35S6
I had a lot of trouble. It took, uh, it took eight months to be able to get to see somebody through the NDIS to come and do an a sit down interview to see what we even wanted. And they were not clear about what goals were and how to present your goals. And we didn't have anybody to speak up for us at the time. We didn't have a support coordinator or anything like that. So we were sort of thrown in the deep end of the NDIS to start off with. But it was it's a new program and you know, these are still early days for the NDIS. Hopefully it will get a lot better than what it is now. I know a lot of people do have trouble with it. Um, but yeah, I think we'll be we'll we'll see what happens, you know.
18:20S3
Have you been knocked back for anything?
18:24S5
Yes. Um. Not so much a thing or a product, but I wanted support, um, to take my dog to the beach regularly. Uh, Lacey is my seeing eye dog, and even though I go for regular walks with her, I wanted someone to support me to take to take her to the beach specifically so that she could have a free run. And I was told that, um, I that wasn't specific to my disability, that I wouldn't be able to get support to do that because, um, you know, a normal person wouldn't need support or, um, so I got knocked back for that. And also, I remember I got knocked back for my gym membership, which I sort of expected because anybody would have to pay for their own gym membership. But the way we got around it was that I paid for my gym membership, and I got NDIS to pay for my support worker, Chris, who takes me in spots for me and takes me to the classes. So I still had to pay for gym. But instead of having to pay the exorbitant amount that most exercise physiologist charge, I just got a normal support worker who knew their way around the gym and that was happy to spot me.
19:41S3
That's an interesting side effect, because it's usually been a case that, uh, if you present yourself to any sporting organization or feature, that they have to be able to learn how to look after you. So the fact that now we've got support workers coming into somewhere like a gym, I think actually takes away some of the opportunities that, um, the workers at that gym might actually have, because it used to be something that they could add to their resume when they were looking for work elsewhere and saying, yes, I've provided support to special needs clients, etc., etc.. So yeah, I think that's an um, almost a negative side to the NDIS.
20:20S5
Yeah. And I can see why you would say that, because when I was part of a gym before the NDIS, I had to go in by myself. I had a personal trainer who trained me twice a week, and it was a very steep learning curve for her, learning how to teach me to do things. Luckily, I'm pretty good at following directions and my spatial awareness is pretty good and my form and technique were great. But just learning how to communicate with a blind person and and direct them to where they need to be, especially for things like stretching and yoga. Whereas now I've got Chris and he stands behind me and he tells me what to do. So the the trainer just has to do it and demonstrate to the rest of the class. And I've got Chris, so there's no engagement on that level. Uh, from the Pete's.
21:06S3
I'm betting your former personal trainer has got that on her resume saying have provided me provided her assistance to totally blind client.
21:14S5
She probably has. Yes.
21:16S3
So that's a fascinating one. Uh, Stephen.
21:19S6
Yes. About, um. Have I ever been knocked back for anything? Um, yeah, I've been knocked back for loads. I've been knocked back for, uh, a, uh, mobile phone, uh, a laptop, uh, uh, one of those, what do you call them up? Uh, uh, getting all tongue tied. Sorry, folks. Well, uh, iPad and my daughter has been knocked back five times for a talking microwave. And in the end, one of her support workers said, Margaret will go out and buy you one. And she got the top of the range talking, um, microwave for, uh, as far as programs or support, I've been knocked back for horse riding lessons. Sorry about that. Um, horse riding lessons.
22:05S5
Also, um, your son, uh, Jesse stays with us one weekend out of the fortnight, and because he lives down south and his schooling is down south, Stephen tried to get support from the NDIS to get regular driver to drive him to and from school, and also to engage with Jesse and taking him to activities and the NDIS, basically said, well, no, that's your normal parental responsibilities. Anybody else would have to do that. Yeah, I was.
22:35S6
Quite angry about.
22:35S5
That. And they completely looked past the fact that, um, actually my vision impairment makes it so that getting him to and from school on time is, is a very hard thing to do, and especially when you throw something like anxiety over the top of that. And Stephen, you do suffer from quite a lot of anxiety. Absolutely. It makes it really hard.
22:58S3
Something that is fascinating is that, uh, a lot if you're living in, say, Sydney or Melbourne, then getting to and from some places even locally is a lot easier. Whereas living in a more spread out city like Adelaide, it is a it's a car city. So getting a child to school or something like that is not as straightforward as you might think, is it? I mean, it's uh, you if it might be a, uh, 15 minute drive could end up being up to an hour on a on public transport.
23:26S5
Exactly.
23:27S6
Sorry. Can I answer this one? Yeah. When I take Jessie to school in the summertime, he loves traveling with me on public transport. Now, to be able to do that, we have to leave home now. Take this in mind. That school starts at 8:45 in the morning. We have to leave school from Paradise. Sorry. Leave home from Paradise at about 7:10 in the morning to catch public transport. And we'll have to catch three buses to get to school, plus walking time as well. On top of that, he loves it during the summertime or when it's warm, but during winter time when it's freezing cold and wet and nobody can be bothered with all that, it takes forever. Whereas it's about an hour and a half trip on public transport with all the ins and outs, with a car going from A to B, from from Paradise to to his school down south, it it takes about 50 minutes and that's at the most.
24:23S3
So I'm going to tell you about who about my support worker. And I put in a job again through station sponsor Mabel. Uh, and, uh, my, my, um, thing was quite specific. I needed somebody that had a relatively good sized car because I wanted stuff to be taken down to the recycling because I tend to enjoy the old libation. And, uh, I do have a lot of bottles and cans that tend to pick up. So, uh, that was the the request that I put in. And I've got the wonderful Megan who, uh, does turn up, uh, once every. Yeah, once a week, every Thursday afternoon between 2 and 4. And we drive places. It's, uh, like having again, a member of the family taking you around places because also, she's got a working pair of eyes, which is extremely handy. So if we go down to somewhere like Bunnings or, uh, Ikea, we've done that in the past as well. She can actually spot stuff for me. So I'm looking for this and it's like, oh, it's over there. Fantastic. So again, you're it's the benefits of taking a of a member of your family, taking you there somewhere with none of the responsibility. That's been my experience. And so, yes, uh, I've each week I've been been able to find something to do that would warrant a nice big SUV and the back of a car or something like that.
25:40S5
So when you applied to find a support worker or when you posted a job on Mabel, how what was the process like for you when it came to vetting support workers? Because obviously you can get plenty of messages from people, and finding the best one for you is it can be a mammoth task. So how did you go about that?
25:59S7
Oh, it.
25:59S3
Was a nuisance. And I, I was overwhelmed to start out with. I had about, uh, 10 or 11 to that, uh, came through to start out with and I was sort of processing it and going, oh, all right, okay. And picked one of them and she said, sorry, I'm busy. I've got other things to do now. And so I was like, oh, okay. So no, it did take a while. And so really it came down to working out if someone posts a job, you've got to get back to them within 24 hours because otherwise things move so fast. And I just plain got lucky with the person that I picked. Really. Um, and it also helps Adelaide being a small town as it is that, um, her brother actually went away to Seoul with us.
26:36S8
Oh, wow.
26:37S5
That's amazing.
26:38S3
So, yeah. Small town. Um, yes. Her brother's a Paralympian.
26:42S5
I love it when that happens. And you find out that you have mutual acquaintances or something.
26:47S3
So, yeah, that's my experience. And, um, I think this is the big thing is that, uh, and I think something that, um, the sighted world doesn't understand is that it's often not the disability that we have that actually makes us handicapped. It's the inability to drive a car. It's the, uh, society itself that relies on that car. Really?
27:06S2
Right. Well, it seems, Sam, that, uh, getting a cleaner isn't as straightforward. And certainly as one might hope it would be.
27:15S9
We've actually had a really good experiences with air.
27:17S3
Cleaners, but we've gone with a third party agency. We've gone through, uh, spotless Cleaning who have, uh, looked after us quite nicely.
27:25S2
Cool. Lizzie. Stephen, thank you so much. Um, that's your lot for this week. Uh, our thanks go to Lizzie and to Stephen. And, of.
27:33S3
Course, thank you for listening.
27:34S2
We'll be back next week. But between now and then, please do get in touch with the show. Whether you have experience with any of the issues covered in this episode of Studio One, or if you think there's something we should be talking about.
27:45S3
You never know. Your story and your insight may help somebody else who is dealing with something similar. Email is best studio one at Vision Australia. Org that's the studio one at Vision australia.org.
27:57S1
Virgin Australia Radio gratefully acknowledges the support of the Community Broadcasting Foundation for Studio One.
