Meredith Prain

00:15

S1 (Speaker 1)

On Vision Australia Radio, this is Vision Extra with Peter Greco.

S2

It's always great catching up with Meredith Prain, one of our finest advocates, particularly there of deaf blind, but just generally one of our finest advocates. Meredith, lovely to speak to you again.

S3

Thanks, Peter, for that lovely introduction. Good to speak to you too.

S2

We only speak the truth on this program, Meredith. So you can take it as gospel. Meredith, just before we talk about what we going to talk to you about later on this month, in the month of June? DeafBlind Awareness Week, Such an important week for awareness and obviously for advocacy.

S3

It ties in with Helen Keller's birthday every year, which is the 27th of June. So always the last week of June is a very important week on the deafblind calendar and lots of things going around happening in Australia this year. But I know you're going to speak to my colleagues about that in an upcoming show.

S2

Yes, you've given us some leads and we will follow them. So thank you so much for that. But you're involved with a pretty exciting stuff yourself at the moment. Yes.

S3

So with our DeafBlind Information Australia project that's funded by the National Disability Insurance Agency, we started through Covid, but we're so excited to finally be able to travel again and run face to face workshops all around Australia. So we've got quite a few coming up. We're going to every capital city. So good to get out to your listeners as early as I can. We've already been to Brisbane and Melbourne, but next, sorry, this month we're in June already, we're in Darwin next week and then in Perth at the end of the month and then Sydney and Canberra workshops are coming up at the end of August and Hobart and Adelaide later in the year. So I'd really encourage people to go to the DeafBlind Information Australia website to see when those workshops are, when the dates are and to register or to get on our mailing list or our Facebook page. Also shares all the information about the workshops, which is if you just go deafblind information in Facebook. 

But just yeah, wanted to touch on some of the topics that we cover. So it's relevant for anybody at all working with people born with Deaf Blindness. So it could be children or adults. So even in day services or adult group homes or kids in school or any kids receiving the NDIS, but we focus a lot on different communication methods, but also touch is so much involved, so really looking at different ways of touching and and how you can guide and support learning through touch. I think a lot of people tend to just grab kids hands or adults hands and there's a variety of other different ways you can do it. So we focus a lot on that and just learning a bit more about vision and hearing how you can optimise any residual vision and hearing. Because most people with deaf blindness do have some functional residual vision and hearing. So looking at how you can adjust environments to to optimise communication and independence. 

So yeah, a variety of topics there. That's not all we cover, but most of our participants walk away pretty happy with the two days and come away with lots of practical strategies that they can apply immediately with their clients moving forward.

S2

It's going to ask you about that a couple of days. I mean, it sounds like it's quite intense, but I mean, apart from the sort of practical interactions, there is kind of stuff they can take away with them to, you know, refer to in the future as well.

S3

Yes, definitely. So. I mean, there's all the PowerPoints, but they get some hands on like practical experience and there's a lot of workshop components where they have to think about the people that they're working with and how they would apply these ideas to to the people that they do work with.

S2

Yeah, well, I probably wasn't the greatest at geography, but when you went through the cities, you pretty much are covering all of Australia, which is fantastic. And as you said, I mean the online stuff has been tremendous, particularly with Covid and the inability to be able to travel. But there's nothing like the face to face stuff, is there?

S3

That's right. For a couple of reasons for this particular topic. So I think with deaf blindness, because you're always doing something in the tactile mode, so to actually be face to face, to support people, to have a go at it and learn how to do it while you're there present and can work with them, that's really important. But the other thing is that deaf blindness we know is a is a low incidence disability. So it's really nice for people to actually meet other people in their city who are working in this area. And it's been wonderful to see that connection and networks building just through the workshop, bringing people together with. Interest and experience. 

So it's that double whammy that you don't get to have those chats over a coffee or at lunchtime when it's online or even just a quick aside in the room. I think when everyone's online, you can't have those those social chats so much. It's a whole group discussion rather than the ah, you work in that area, Oh, I want to catch up with you and actually the opportunity to be able to do that. So yeah, two really good reasons why. Why we think the face to face sessions are so important for this group.

05:35

S2

It's a bit like, you know, when the G7 or the G20 or whatever meet and they talk about the things going on on the sidelines, they're probably more important than what's happening in the big room, aren't they really.

S3

So true, Peter I think we lose sight of that. And this like I'm big for working remotely. It's a huge advantage to me in lots of ways. But still, it's so important to be back in the office as well. And for these workshops, yes, a lot of the work happens in the in between bits. You're exactly right.

S2

What about kind of coming up with the curriculum, if you like, or what's going to be discussed? How do you kind of arrive at that? Because, you know, probably no two people or deafblind are the same as in no two people are just blind or no. Two people who, you know, work as accountants are the same. How do you kind of come up with something that you think is going to be, you know, encompassing what what people are wanting to to cover?

S3

It's a great question, Peter. And the two trainers, myself and Melanie Roberts and have yeah, over 30 over 40 years.

S2

Between us there wasn't a leading question.

06:45

No, no. But guess we yeah, go on our own experience, and yes that no two people are the same. And so a lot of it is around approaches. It's not prescriptive do this or do that. But these are the things to consider for any person that you're working with. And something we start on is a life space model and get people thinking about what aspects of the world can this individual access with their vision, with their hearing, with their grasp, like with their sense of touch, really thinking about individual and the the best way of providing information to them and then all the different ways that you can provide information. 

But it's very much around it's more about ideas and approaches than do it this way, do it this way, do it this way. And we give a lot of video examples. People get to have a bit of a go themself at trying out different things, seeing what you know, what they do and don't like and the person they're with, how they respond. So yeah, not, not too prescriptive. A lot of ideas for people to walk away with, to try.

S2

Now I'll ask you a Dorothy Dixer: I'm assuming that people are deaf, blind, have had an input into this as well. It's not someone that's I've got this really good idea. Yeah, it's been much more consultative and inclusive than that. Yes.

S3

So there's a couple of ways we do that. So we have a reference group that has two parents and for people with deaf blindness on it and any resource that we develop, including the training they look over to make sure there think it's accessible and that it's relevant and meaningful. But we also have people with deaf blindness in each state that come along to to share their experiences as well. That ideal, yes, would be that we had a deaf blind presenter throughout, but we're not quite at that point. 

But yes, definitely. Very much. There's been plenty of involvement from people with deaf blindness and great to see a few family members attending these workshops as well, which is always great that they will share their personal experience as we go through also and people with deaf blindness attending as well. So a real mix of people and yeah, definitely always part of the sessions are presented by people with deaf blindness or family members.

S2

You talked about deaf blindness being a low incident condition, if you like, or disability. I call it what you like. Can that kind of be at strength as well that because obviously there maybe aren't that many people who are deaf, blind or fit into that category, if those services can be provided at the ultimate level or the very best level, yeah, that can kind of be a very big positive as well. Like if you can be an expert, but if you can be really good in this area, it's going to be a huge benefit.

09:37

S3

Yes, I think part of the problem is the geography. So you might have one person in one region, may only have one deaf blind client. But just on the low instance disability. I'm glad you brought that up, Peter, because increasingly we're thinking the numbers are a lot higher than originally thought and that our way of estimating prevalence are a bit lacking for a variety of reasons. I think more and more people are recognising that people with complex disability often have visual and auditory processing issues, and so deaf blindness strategies are very much relevant to them and that they can be considered as deaf blind themselves. I think often if there's a cognitive impairment or a physical impairment or other disabilities, the deaf blind has come so far down the list that it's not considered that much. 

And of course, with our aging population, that's the highest growing population of people with deaf blindness. And that group also just go, Oh, well, I'm just old and don't actually recognise that there is that combined vision and hearing impairment that really creates a more significant disability that that isolation and that there are strategies and services and approaches that could be benefiting them. It's tricky with with in service delivery. I think here a lot of things market is referred to often and they would say that this group is a thin market, which is very much what these workshops are about. It's building networks, building support for people so that there's other people they can contact in their area, but just building their capacity and willingness to have a go. I think people get referred someone with blindness and go, Oh no, I wouldn't know what to do. So just starting to build people's sort of willingness and confidence in taking on deaf blind clients don't want.

S2

To get too much off topic, but I was speaking to someone the other day from Dementia Australia and they were saying what a role that hearing loss can play. Not so much in dementia, but you know, sometimes that can make people feel excluded and all of a sudden they don't communicate as much. They feel more socially isolated. And if they have got, you know, propensity, if you like, to to be vulnerable to dementia, that can also be a very important factor that can sometimes be overlooked or maybe can be corrected if that attention is given to their hearing impairment.

S3

Definitely. Peter. That's right. And I think and you know, it's that that age group, I think people often do just think, well, it's just aging and there's so much more that can be done. And and that isolation is really a big issue. And people who understand deaf blindness can provide strategies or link them in with other services and support networks. I think even just finding other people who have the same issues is really valuable. That peer support is critical in deaf blindness because people, the people themselves feel really isolated and the families and the service providers. So a lot of it's about linking people for peer support and learning from others who have walked the path before them.

S2

Yeah, well, if you kind of feel like someone is getting what you're saying, you know, not just saying that they get it, but you can sort of sense that they get it. It can make a huge difference to the outcome.

S3

It does. I have a vision impairment myself, and I know when my friends who have a vision impairment go, oh, don't you hate that? And you know, they really get it. Like people will say, Oh, that sounds annoying or that must be annoying. And it's like, Yeah, but you don't, you know, they can't fully appreciate what it's like. And then when someone who, you know, has the same really does have the same experience, that sense of belonging and connection is really great.

S2

So your road tour is underway. Well, it's started. It's already underway, as I say. So just give us the areas that you're going to and also how people can find out more. 

S3

There was one other thing I wanted to mention as well. While I'm here for people who can't get to these sessions, they will be recorded.

S2

Oh, excellent.

S3

But also a lot of the resources that we've developed are now all part of a deaf blind course. And so it's not just our group that are making stuff, but anything developed in Australia or around the world. We're uploading in partnership with Nexans, who were formerly the Royal Institute of Deaf and Blind Children, and I will send a link out so this is not just deaf blind information Australia. This is a broader, more national group working on this because we recognise there's just a lack of training generally for people working in this area. 

So I'll answer your first question, which so coming up, we're in Darwin and in Perth in June, then the end of August and into September we're in Canberra and Sydney. And then I don't think the dates have yet even been set for Hobart in Adelaide, but they'll be, yeah, sometime between September, yeah, October I would say. But just in terms of that deafblind resources course, there's a huge amount of content in there. It's self-guided and self-paced. It's pretty easy to click through and find what you want there. Stuff on orientation, mobility, stuff on early communication. There are peer support networks around Australia that you can link with, so just a great resource to work through and lots of. Online webinars, video content and even the Q&A sessions from video content is sorry from webinars is available. 

I'm tripping over my words a bit today, Peter, but I'll send you I'll send you the links to our DeafBlind Information Australia webinars. Sorry, we have webinars as well so people can access the webinars, but also those face to face workshops, just the website itself, the link to the Facebook page, but also to this decline resources course. So yeah, a whole heap of information there for anybody interested. Alright, we'll.

S2

Alright, we'll put that up on our Facebook page. Meredith, always great to catch up. We'll speak again soon.

S3

Great. Thanks for your time, Peter.

15:46

S2

Meredith Prain there, talking about issues dealing with deaf blindness. That is it for the program. If you've missed some of them, if you'd like to hear it again, you can search for Vision Extra on the iTunes store, on Spotify, or your favorite podcast service.