When I'm 65

00:30 S1

Vision Australia Radio would like to warn our listeners that due to winning a national award over the weekend, this week's episode of Studio 1 might contain some excessive smugness.

00:40 S2

This is Studio 1 on Vision Australia Radio.

00:47 S1

Hello, I'm Sam.

00:48 S3

And I'm Lizzie.

00:49 S1

And this is Studio 1, your weekly look at life from a low vision and blind point of view, here on Vision Australia Radio.

00:55 S3

On this week's show...

00:57 S1

Once more we're talking about the NDIS - but this time with a different slant.

01:00 S3

If you're older, is My Aged Care a genuine alternative? We talk to someone who is currently on the system and talks about the pros and cons of my aged care, and it may surprise you what she has to say.

01:14 S1

As we always say at this point, please do get in contact with the show if you have experience of any of the issues covered on this episode of Studio 1, or if you think there is something we should be talking about. You never know. Your story and insight may help somebody who is dealing with something similar.

01:28 S3

You can email us at studio1@visionaustralia.org - that's studio number one at Vision Australia dot org... or perhaps you can get in touch with us on our socials. Just look up VA Radio network.

01:41 S1

Hello Lizzie, I catch you just as you've jumped off a plane. Or more or less.

01:46 S3

Yes, you have. And I must say I am glad to be home. I had a lot of fun in the Gold Coast, but yes, Adelaide is definitely my preferred location.

01:54 S1

So dear listener, we will tell them why you are on the Gold Coast.

01:58 S3

That's right, I attended the annual CBAA conference, as in Community Broadcasting Association of Australia, and we actually won a national award for Best News and Current Affairs Program.

02:13 S1

So it is nice to actually have a good... bit of recognition, but it also hopefully, fingers crossed, helps us when we get our funding in future as well. So that's the big thing really. We do like to be told we're fantastic, but we already know that.

02:27 S3

I also like to think that it motivates us to keep the good content coming.

02:31 S1

Well, we can't rest on our laurels. And as I said at the South Australian Community Broadcasting Awards, I think that the best, as far as we are concerned, is yet to come.

02:41 S3

I do agree with you.

02:43 S1

This gave you a few new experiences as well. This was the first time. I mean, it's not the first time you've travelled... no, and it's not the first time on a plane. Oh, that would be exciting. This was the first time you've been on a plane with a guide dog. I mean, can you tell us what that experience was like?

02:56 S3

Crazy. So it was a massive learning curve. Firstly, the challenges and the hurdles that we had to jump through just to get the bookings all straightened out. Virgin Airlines, I will say absolutely fantastic, sat us right at the front of the plane. They were more than accommodating. They looked after us every step of the flight. On the way back we had a few other issues, but all in all it was fairly smooth sailing. Lacey was really well behaved, stayed quite calm, lay down for most of it. And, you know, she didn't seem to have much qualms about flying.

03:33 S1

What about the actual hotel experience? I mean, again, you've... travelled before, but I mean, have you have you had much experience with a guide dog in, say, accommodation of this sort of thing?

03:43 S3

Yes, I have, because I've actually stayed in other hotels in South Australia, in apartment buildings and things like that. So I have had this experience. But, you know, obviously the Gold Coast is a different in a different state altogether. But, you know, they were really accommodating to us as well. They had me in a floor right by the elevator so that it was easy for me to get Lacey down into the toilet if I needed to. They gave me a room with plenty of space to, you know, have Lacey's bed situated. And, you know, they were more than helpful when we asked about, you know, options for toileting. 

04:19 S1

And... what about the conference itself? I mean, did you learn anything new or interesting?

04:22 S3

I learned so much. So I actually took a lot of notes, for the four of us. Three of us. And I learnt about interviewing, I learnt about the foundations of program planning. So you know, all the technical sort of stuff that one hopes to learn in the conference. But I also learnt something else. I think I already knew this, but Lacey loves food and she will stop at nothing to get at it.

04:48 S1

Gee... can we name a Labrador that is not like that?

04:52 S3

Exactly. Like I said, I think I already knew that, but you know, it's just reiterated the point.

04:58 S1

So yeah. So at the... the warning at the front of the program said smugness alert, because we are both feeling just a little bit smug at the moment about having won that award. And also a big congratulations to Peter Greco, who I also produce his content for, who also... pulled a gong as well. But anyway, some people that are not necessarily feeling smug about themselves have a few things to say about the NDIS, so let's hear from them now.

05:29 UU (THEME)

I know it's... You know...

05:31 S4

Good intentions and that. But it's got so many annoying obstacles. For instance, the long, slow way and the way that the NDIS has caused a lot of things to change, where services try to limit people with disabilities and what they can and what they can't do due to insurance policies and blah blah blah. But I reckon, I hope it gets a lot better, I really do. Yeah. 

S3

So do you have any, like main positive points, things that the NDIS has given you that you didn't have before? 

06:13 S4

So before I joined the NDIS, I was getting approximately six hours of core support a week where I could go out in the community and go to different places with support workers. But if I didn't use those hours, they build up. Whereas since joining the NDIS, I did have to make an appeal for the plan because the plan was initially I was only going to get four hours of support a week, which was not good. So in the end it went up to ten hours of support a week. So yeah, I can do a lot more things. And yeah, that's the a very good thing that it's done for me.

06:56 S3

And what sort of things do you like to do out in the community?

07:00 S4

Oh, go to the gym, go out for dinner, meet up with social activity groups like... catch-ups with the deaf-blind community in Perth, you know, going to the beach... going to Adventure World, which is a wonderful amusement park here in Perth... visiting Animal Farm, going shopping, whatever takes my fancy, really.

07:31 S5

I'm going to be brutally honest with you. I would not be living the life I am living without it. I would not have the funds to be able to engage the support that I have in my life without it. It has opened up a world of opportunity for me that I feel very grateful and blessed to have NDIS funding. Have I been frustrated with the process along the way? Absolutely. Haven't we all? But it has allowed me to become a self-advocate. I have fought and won battles with them. I have. I've learned a lot. I have learnt to use my funding creatively, um, in that when I say that, I mean to be able to meet my goals in ways that other people may not realise or that they can do. 

I feel grateful every day that I can have someone by my lawns and clean my home... I feel grateful every day that I have a couple of support workers out there that I can call on to... take me places if I need. I couldn't ride without the NDIS. I couldn't ride, I couldn't have my pilot's. I couldn't have... the transport. I need to get the bike around. I couldn't... you know, I couldn't do any of that without the NDIS. So I am I a fan? Maybe not the right word, but I'm very grateful for the NDIS. I think there's a lot to be fixed within it. I think it's very understaffed. I think... things take too long. I think they ask a lot of you, but... when you are trying to... get support or funding for particular things, I understand that you need... professional assessments for certain things, but that process takes way too long. But when it all works, it's life-changing.

09:44 S3

And it's, what are the best things to come out of the NDIS for you?

09:48 S5

I think the thing that I'm most grateful for with the NDIS is that... I'm fairly hands-off with them. So once I have my plan, and I have a three year one at the moment and I'm happy with it, I can self-manage it and I the portal is accessible. I do get my support, I go on, I do a claim, it takes me about five minutes and then I've got funding in my bank account in the next couple of days to pay my support. That, for me, is the ease of that without having to talk to a single soul. That the seamlessness of that, and I hope they never change. That is the best thing that's come out of it for me is that I'm able to self-manage my own supports, which means it is allowing me to live a fairly ordinary normal, if you will, for want of another word, life. That is supported, but it's all happening in the background. Yeah. 

I don't think about it every day, so. Yeah, I and it's a, you know, it's also allowed me to, you know, to be able to do some travel as well as far as... being able to use support to do that. With regard to having people help me. Yeah. So, and the transport, you know, transport is such a big, big thing. Big, big, big, big thing, you know, so they've understood, I think, especially with people with vision impairment, that we have to use taxis occasionally. And at first they went, Oh, well, you've got a cane and you've got a dog. You're okay. Well, actually no, sometimes Tilly's not going to get me to places and the cane is not going to cut it. So I'm going to need to take a taxi. So. Or an Uber or whatever. 

So I, they, they're becoming more and more understanding of what? How transport... of all the disabilities... how transport for someone with vision impairment is so crucial. Yeah. So, you know, I think they're getting better. I think they're getting better. And I'm not I'm not sure, but we'll see. Yeah. But for me... as I said, it's changed my life. Yeah.

11:57 S6

My honest opinion. Yes. It's a bloody joke. It is an absolute joke. Because now, with everything the way it is, when you submit something like an S48 review, a change of circumstance review, which I've done, I'm still waiting and I am just about at the end of my funding. That's going to make things very difficult. In fact, it's already made things difficult.

12:19 S3

Because your job, the one that you're currently doing, is reliant on other people's NDIS funding. 

S6

Correct. 

S3

What are some of the difficulties that you've come across with that?

12:29 S6

I think it's more that people don't know who I am in terms of, you know, what I can do and all that sort of thing. Depending on how much funding a person has, makes it a bit difficult for me to maintain the job that I do. So I have to wait until somebody, you know, got funding enough to be able to use my services. Otherwise they're going to have to pay out of their own pocket.

12:52 S3

Are there any positives that you've gleaned from the NDIS? Any good experiences that you can talk about? Anything that the NDIS has helped you to achieve or acquire?

13:02 S6

Well, quite apart from anything else, allowed me to get out and about and... you know, do a few more things that I otherwise would have problems with. Like if I want to go somewhere saying like down to the animal sanctuary, down near Victor Harbour, feed the kangaroos and all that, I've got to go... do that. I otherwise wouldn't have been able to do that on my own. I would have had to find somebody and, you know, offer them a bucket load of petrol money and maybe a feed on the way. But when Katrina was here, we took her up to the Melba's chocolate factory. It's bloody expensive, though. It is. She spent 120 bucks Australian there. Worked out to about 79 US. And I spent nearly that myself. So.

13:46 S3

Got any of the goods left?

13:47 S6

No, of course not. The chocolate.

13:53 S7

It's great because it kind of just gives you so much more freedom and independence to just live how you want to live. So for me, using it for transport for Ubers has been a huge thing. It just lets me go about my day more independently. When public transport isn't an option, I can. I'm not reliant on others. It's also been great for support workers because, um, it allows me to like, connect with people who can help me with different things. So I'm not reliant on my family. And yeah, it's it's been really helpful.

14:27 S3

So what are some of the, like the most positive experiences that you've had with NDIS?

14:32 S7

I think finding support workers who have kind of become good friends, like that's been a positive.

14:44 S1

Okay, so you've had your say now, Lizzy, you had an interesting chat with Franka, who has a very different approach to things, really. I mean, I was thinking initially that, Oh my God, she wasn't on the NDIS. Things would be terrible.

14:58 S3

I also thought that, I mean, it just shows how much there is a gap in the knowledge of what support my aged care provides, but she has quite a lot to say about her experiences with my aged care. And again, it might surprise you what she has to say.

15:13 S1

So dear listener, if you are losing your sight and you are over 65, maybe it's not all that bad.

15:19 S3

There's hope for you yet. Branka, welcome to Studio 1. It's good to have you back again.

15:27 S8

Thank you. It's nice to be back. 

15:30 S3

So you were in a really unique position, because you actually got signed up with My Aged Care before you turned 65. Isn't that right?

15:36 S8

I turned yes, I joined my aged care before the NDIS came out and I'm only 62, so I do have the option of swapping, but I would prefer to stay where I am on the... My Aged Care. Why is that? I just like the setup. I like the group that I'm with, the organisation that I'm with, the people that I get, the way they run things, I just find it... easier. And I hear a lot of... horror stories about the NDIS and how long it takes to get something approved, whereas I don't have that issue.

16:13 S3

So talk us through, like, what sort of supports do you get on My Aged Care? Because it, I mean, I can't imagine they would be too dissimilar to the NDIS, right?

16:21 S8

I would think it'd be roughly the same. I get cleaning once a fortnight, I get two hours social support. I do get a cab charge which you don't get on NDIS. I'm now going to start a Pilates exercise class, just at the medical centre next to me. And I've also got equipment like I've got a new cane, a talking air fryer I have received in the past, an iPhone and a watch and also a Samsung TV. And when I went to a talk of both the NDIS and My Aged Care, the people that were giving the talk on the NDIS side said that I wouldn't have received those items, the TV or the phone or the watch on NDIS, right?

17:19 S3

I also remember us talking a while back, which is this is why I wanted to really touch base with you, because you were in the position where you actually wanted to get a guide dog.

17:29 S8

I actually contacted quite a few organisations. I won't give their name, but only one of them responded, and straight away. And then another one did after like a month or something, saying, Are you still interested in this? You know? But they all told me that I had to move to NDIS, so they weren't prepared to give me a guide dog under the current circumstances. And I asked, Well, surely people who are over 65 and on My Aged Care, and need a guide dog can get one... and they were extremely evasive in their answers... and one of the people said that you, they would need to contribute some money towards it because I've been given estimates of 70,000 to 90,000 for the dog, the training, the assessments.

And obviously on a level 2 My Aged Care package you get, you know, around 20,000 or just a bit more. So that isn't going to cover it. So... yeah, they all wanted me to get totally funded for... the dog.

18:43 S3

Oh, yeah. And that's understandable because there's not that government funding there anymore. Like there used to be. Yeah, yeah. When I got Lacey, they were it was government funded with NDIS hadn't rolled out at the time. But if I want to get another seeing eye dog now, I would have to apply for the NDIS funding. Yeah. So you said you were on a level 2 package for My Aged Care. So, like, how many levels of My Aged Care packages are there?

19:08 S8

They go up to level 4.

19:10 S3

And would that cover a guide dog if you want?

19:12 S8

No, no, I think that's around 50,000 or 60,000. I'm not 100% sure, but it still wouldn't cover the 70 or 90,000. Umnd for a level four, you have to have a lot of other health issues... not just vision. So I mean a lot of the level fours, this is a general comment, but a lot of the level fours are for older people... you know, that are have a lot of mobility and health issues and, yeah, they... need a lot more help.

19:48 S3

I guess they wouldn't have been willing to give you any of the support while you transitioned between My Care and NDIS.

19:55 S8

One of the organisations, they said they didn't know how to do it, but they'd work it out. But it almost sounded as though I would have to then have them as my care coordinator... like the the organisation that dealt with the... NDIS. Okay. And it just got a bit, a bit much. It just got a bit frustrating. Like no one seemed to know the right answer, and I just thought I'd leave it and and deal with it later and see whether I actually need to or not. 

20:30 S3

Well, what are some of the best things that you've got? Apart from like the TV and stuff, what are some of your best experiences that you've had with My Aged Care?

20:37 S8

I think it's some of the individuals that I've had, like I had a support worker who's now been promoted, and I can understand that she's brilliant. But when I moved from Campbelltown to here, where I'm living at the moment in a two bedroom unit, I wanted to get new furniture and everything and... I had a specific colour, denim blue that I wanted for the lounge, and like she would explain the colours perfectly to me. Oh, this is a bit more green. This is a bit more purple. This is, you know, like the the different undertones... and that's what I needed. They matched me up really well with this person because... she was very in tune to what I needed and what I didn't need. And, like, she didn't overdo it, mother me  sort of thing, but... she offered the assistance I needed. So, yeah, it worked really well.

21:36 S3

So when you get your my aged care package, is that a yearly thing or is it every two years?

21:40 S8

Every year, OK. Yeah. Because NDIS plans, you can either get a yearly... although they're phasing those out and they're wanting to do more 2 to 3 years. I think there are going to be some changes on my aged care as well... they said they were going to be no home appliances covered, but then they did let me have the talking headphones because it's specific to my vision, yeah, not... yeah. I think, like my mum, when she was on My Aged Care, she got an air conditioner, installed. So they've obviously changed... since then, but yeah.

22:21 S3

Well, I think they're cracking down on funding in a lot of places as well. NDIS are getting, particularly gnarly environment with legislation changes as of the 3rd of October. So it's probably going to come across all like package supports and things like that and changes.

22:40 S8

I think they're actually going to change the levels as well in My Aged Care. Someone said this is what they thought was going to happen, but I haven't had a meeting with my care support manager yet to go through it all. So yeah, I'll find out.

22:56 S3

That's fair enough. So if you wanted to get like mobility and cane training, then are you able to claim for that on My Aged Care?

23:03 S8

I am yes.

23:04 S3

Okay, cool. And I guess that would go for any other sort of like OT or therapies that you might need.

23:09 S8

Yeah. Like when I got my... talking airfryer because I'd never used it before and because I set fire to my toaster because I left a piece of cardboard in there, I actually got an OT to come out and... show me how to use it. So, and where the buttons were and everything like that. So I still get that sort of help. I, just they cut it off at the guide dog.

23:34 S3

Yeah, well, that's rather unfortunate. And did they say, like, how long the process would take for you to swap to the NDIS and then how long again, it would take for you to be assessed for a guide dog and how long you'd have to wait?

23:46 S8

They did not know because they have not had... this situation before. They've had people... transfer over from the NDIS to My Aged Care, but not the other way round. So they did not know how to handle it... time limits or what would happen. I asked if... I would be getting any help in the transition and they didn't think so. They'd think I'd have to cancel my My Aged Care and then apply for the NDIS. But they weren't... confident in that either.

24:22 S3

So that means that you'd have to go without supports for some time while you transitioned between services, right?

24:29 S8

That's what they're saying. But they weren't sure. And it didn't appear that anyone knew who would have the answers to that either, because it was such a unique situation.

24:42 S3

Of course. So what's your plan going forward then? Are you still going to try and get the funding for a guard dog, or have you given up on the idea?

24:49 S8

I've given up on the idea through My Aged Care. I do have a couple of years before I go to, you know, that I can swap over to NDIS and I'll see what happens to my vision and my circumstances. And also, you know, whether they come up with something else that might be more useful than a guide dog or another way, like a... technology is always progressing, so you don't know if they'll come up with something that might be a bit more helpful than a dog.

25:22 S4

This is true. This is true. So you were saying before, at the beginning that you they didn't have NDIS when you applied for My Aged Care. So how long have you been on My Aged Care for?

25:33 S8

Yeah, that's a good question. I would think it would be over ten years now. Wow. And yeah, I just wanted... and I was actually square peg in a round hole for that one as well because... I wasn't 65, I was in my 50s then... they had to put it forward as having retinitis pigmentosa, which is an ageing illness. And as I got older it would get worse. And that's how they slotted me in at the time.

26:06 S3

Okay. So what what made you go for My Aged Care support? Because before the NDIS obviously they had state funding.

26:13 S8

I was just referred to that by somebody... I can't even remember who it was. Someone from RSP, I think. And, yeah, they suggested I try them and I did... so yeah. And I got three.

26:32 S3

So do you find it easy to manage your funding? Like, is it funded? Is it managed through an agency or can you...?

26:37 S8

It's managed through an agency. And that makes it a lot easier for me because I don't, I'm not interested in dealing with the finance side of things. And, you know, I can just, if I'm not happy with someone, you know, they can change it. Yeah. I've changed days that I get cleaning or... social support. You know, they're very flexible in that way. So and then also they do like day trips which come out of my package as well. Yeah. So I'm quite happy with that.

27:09 S3

Amazing. So you're just gonna, yeah. You're just gonna wait to see how your vision progresses in the next three years, I guess. 

27:16 S8

Yeah. And technology as well. Yeah.

27:18 S3

Well, thanks for sharing your story with me, by the way. I really appreciate it. [?And I'm worried.]

27:25 S1

That is a wrap for this week. Big thank you to Emma, Lily, Sean and an extra big thank you to Franca. And of course, thank you for listening. Lizzie, what's next week?

27:35 S3

What's it like to pursue a visual arts degree with a vision impairment? We speak to Madeline McNeill about her journey through tertiary education as a student with low vision. We discuss the challenges she's faced and the adjustments that helped her to succeed.

27:50 S1

But between now and then, please do get in touch with the show. Whether you have experience of any of the issues covered on this week's episode of Studio 1, or if you think there is something we should be talking about, you never know. Your story and insight may help somebody who is dealing with something similar.

28:04 S3

You can contact us via email at studio1@visionaustralia.org - that's studio number one at Vision Australia dot org - or perhaps you can drop us a note on our Facebook page. Just go to facebook.com slash Viva Radio Network. We want to hear from you. Goodbye for now.

28:22 S2

Vision Australia Radio gratefully acknowledges the support of the community broadcasting Foundation for Studio 1.