Speaker 1  0:16  
The Disability dialog project presents connecting to community peer support. This webinar was recorded on Thursday the 19th of June, and explores the benefits of peer support and what is needed to create a good peer support program, hosted by kathmani. This event features guest presenters including Arya weibe, Mandy, McCracken, Cheng Fang and Romeo and Roseanne from PPP, this audio presentation of connecting to community peer support is produced by Vision Australia radio.

Speaker 2  0:53  
It's really great to be with you. Just to give you a little visual description of myself. I have white skin, and I have dark brown, straight, fairly thick, short hair, dark brown with a few grays creeping in. I am wearing an orange jumper with a pole with a turtle neck, and I'm wearing some fairly large headphones, apparently similar to gaming style headphones, and in front of me, I'm sitting at my computer, and in front of my computer is a Braille device, which I'm using to just follow our prompts and keep myself on track, hopefully just a little bit about me, because it's, um, first time I've hosted this. So it's really great to be here. But for those of you who I haven't met, which is probably a lot of you, I am in my mid 50s, and I'm blind, and I've been hanging out in the disability peer support space for over 10 years. So obviously, I'm a fan. I've been really privileged to have a number of roles at an organization in the hunter called Cedar community disability Alliance Hunter, which is all about peer support. It's the foundation of what we do there. I love facilitating and training, and I guess my work, if I want to summarize, it really comes from my belief that what we have in common far outweighs our differences. So that's probably my, excuse me, bottom line. So really like to welcome you to today's open dialog. Really warm welcome, if it's if you're with us for the first time today. And I'd like to begin by acknowledging the traditional custodians of the land on which we gather. I'm on the land of the Awabakal people, and I recognize their continued connection to the land and the waters of this beautiful place. Acknowledge that they never ceded sovereignty, and I respect all elders, ancestors and any First Nations people here today. So for those of us who haven't been to one of these events before, I guess you can think of it like a live show where you control the conversation. It's designed to be inclusive, accessible, collaborative, respectful, and, most importantly, fun. So we really encourage you to have your camera on if you're comfortable with that. And so just a quick rundown of how this event will go We'll start by looking at some of the feedback that we received from you before the event. Then we'll get a presentation from Chen about her experiences researching peer support in the Chinese community, followed by an open discussion with the rest of our panelists. We'll then hear we'll also hear from Mandy McCracken, and we'll hear from two people who are part of a peer support group for parents with intellectual disability. Then we'll have some time for questions and answers at the end from from anyone who's participating and would like to do that. So throughout the the event, we'll be collecting and paying attention and noting the questions that you may have and the chat questions and comments, and we'll, you know, be constantly inviting you to join in that chat, as you would like to. So I'm using a screen reader today, so I can't easily read the chat and share your group, your comments and questions. So we have Jess here as our moderator, and Jess is going to share your. Chats with all of us throughout this event. Jess, you should be on camera now giving us a wave, I believe, and you might also say a quick hello and just give us a visual description of yourself. Jess, so that we know your voice and people will know you on screen as well. Thanks.

Speaker 3  5:18  
Bye, everyone. I'm Jess, I'm on war on my country. I am a early middle aged lady, let's say, with short cropped Brown, very graying hair. And I am here to hopefully make things go smooth. I'm wearing, I don't know, a green army jacket today. Have a good session.

Speaker 2  5:39  
Thanks. Jess, so as I started to say before, if you are also unable to access the chat functions, but you want to contribute at any time today, you can email, and you can email the address is info at Disability dialog.com.au, or if you've got an email with a reminder about today's event, you can reply to that email. So that's if you can't access the chat, but you want to make a contribution, and we'll make sure that Jess is aware of those and includes them as well. If you need to, we might have the opportunity for you to come off mute in our Q and A section at the end, and that's particularly for people who might not be able to access the chat or the email. Sorry. I should also like to say a quick welcome, a warm welcome. We have, we have a live captioner, and we have two Auslan interpreters, so that's Bernadette, Angela and Nat so welcome to you as well. So a little bit of background about the disability dialog. It's a project to promote inclusive, collaborative disability led conversations, and we'll just start with a shout out to to our partners. So we have Dana inclusion, Australia, Alliance, 20, Melbourne Disability Institute, and so a shout out to those fabulous partners. We're funded through an information linkages and capacity building grant from the Department of Social Services. And we also want to acknowledge the support of the community broadcasting Foundation, and also shout out to Powerd community broadcasting association of Australia and Vision Australia. So today's discussion is about peer support. It's part of our series of discussions around belonging. Last time we spoke about transport, I guess peer support something close to my heart. I like to think of it as the I get you factor, and for me as a yeah, for me, it's it's about people with the same lived experience coming together and sharing their experiences. It can be social, it could be motivating, it can be encouraging. We can learn new things, and we can make changes in our life through peer support. Sometimes it might be funded through government grants and other sources in order to support workshops and projects and organizations. And sometimes it's super casual, and it might happen when maybe just two people meet by chance and get talking about their shared experience, and I'm sure that we'll learn a lot more about what it means today from our panelists and also from your contributions. So let me introduce our wonderful panelists for today's discussion, and I'm going to ask each of the panelists one of the questions from our survey, and we also encourage all of you to give your own answers in the chat if you wish to. So some of you have probably filled out the survey before today. So the question that we're going to start with is, what's one lesson that you've learned from peer support? And I do encourage people to add their contributions in the Zoom chat. So first up, we're going to hear from Mandy McCracken, after a successful career in publishing and advertising and sales, Mandy McCracken enjoyed time at home raising her daughters since losing her hands and seat to sepsis in 2013 Mandy has worked as a content creator for ABC, radio and online. Is a regular face in the Australian media and a storyteller and public speaker. She. The founder and CEO of get started disability support Australia, and that supports, supports those who are new to disability. She co founded the quad squad. Quad try that again. She co founded the quad squad, our multiple limb loss support group and regularly volunteers with La Trobe University's prosthetic department, helping to educate the next generation of prosthetists. So Mandy, can you start by giving us a visual description, and you might let us know what's meant as well by the words prosthetics and prosthetist. And then can you share with us a lesson or something memorable you've learnt from a peer?

Speaker 4  10:50  
Hi, Cath, hi, everyone out there. Mandy McCracken here, yes, it seems to be we are all the graying hair women today. So I'm here with my curly, what was red hair, which is now going gray. I have glasses and a wooly green scarf because I'm in central Victoria, and it's pretty cold down here at the minute. So thanks for having us. One lesson that I've learned about his support. So when I became disabled at the age of 39 all I wanted to know was that it was going to be okay. That was the key thing. I just wanted to know that my life was had not finished, that there was still vibrant life to live out there, and that I could have someone to talk to. That, as you said before the I get it factor is really important. I just wanted someone who understood what I was going through. They've been through it themselves, and that they were going to tell me that it was all going to be okay. Oh, and, yeah, sorry. Your other question was prosthetics. Yeah, it's a mouthful, so I use prosthetics because I had my hands and feet amputated, and so my prosthetics are, I use robot hands and robot feet, and I also, today, I'm using a body Powerd hook so that just helps me hold on to things like a pen or pencil so that I can write, so that I Yes. Today I'm using my book because it's the easy way that I can access a computer.

Speaker 2  12:29  
Thanks, Mandy, lots of great stuff there. I'm sure we'll come back to and clearly you're a believer in the lessons that you've learned and the lessons that that peer support can offer all of us as we go. So thank you for getting us started. Next up, we have ayah. Wiebe. Ayah is a researcher at the University of New South Wales in Sydney, and ayah focuses on disability with a particular interest in the experiences of Australian Muslim women with hearing loss, and she explores that in her PhD and community work, Aya uses her lived experience and community involvement to make research accessible and bridge gaps between different groups. So Aya, welcome, and I'm going to ask you the same question as we've just asked Mandy, and don't forget people to others. Might want to put that in the chat, but Aya, the question for you is, what is something memorable you've learned from peer support?

Speaker 5  13:35  
My name is Aya. A bit of image description of myself. I'm a Muslim woman. I wear the hijab a man, a very floral, colorful hijab today, and I knit jumper because it's very cold. And I'm joining from the University of New South Wales, Sydney, which is in the medical land. And I also acknowledge the traditional custodian of the land. I'm very happy to be here today during this conversation about peer support. I did work on a project called peer support, I think about five or six years ago. It was funded by the NDIA, and I hired our center, the sociology Research Center, and Australian New Zealand School of Government, to work on a peer support project, and it took about four years, and I was part of that project, and I also do a bit of community work with deaf community, Muslim communities and different disability communities trying to I have very different experiences, but I do prove value in peer support where people you know, coming together that have similar experiences, no matter what it might be. So one group you could have maybe a Deaf connection or disability connection, and then another group you could have a cultural or religious or any other and recently, there's been groups now where there's all of those kind of like identity. It could be more maybe smaller group being emerged, and they could be like Deaf Muslim group, for example, or other gender group, like any specific group. And I feel like there is value in that to be more comfortable with people with more similar experiences, especially when you might be a bit more marginalized or have harder experience with other people.

Speaker 2  15:23  
Looks Aya, that's really good for us to remember that. You know, sometimes we can be in more than one peer support group, I guess, at the same time, and also while we're here today to focus specifically on peer support for people with disability, it's great to remember that peer support is found in all many, many aspects of life. So thank you, Aya, can I just ask you, before we move on, is there a particular lesson, something that you've learned that stands out to you, that you've learned through peer support?

Speaker 5  15:58  
Yes, so one of the roles I had for the Peter pop project was we were developing resources. So I was working with organizations developing resources for Peter Paul. So things like accessible format, easy to read, videos in sign language, different language, translation of glossary terms about peer support. So there are a lot of resources that have been developed by organizations, and our job was to kind of evaluate the resources the process and build the capacity. And some of those resources, I can send you the links later on, and you can have access to some of those. So it was pretty much building the capacity of peace support for organization to have access to them. But we also try to make sure that these resources were accessible in so many different ways and languages and format and working with different language groups, so we had online Sign Language glossary and six other cultural languages, like Arabic, Vietnamese, Chinese, and I can't remember the other one and some of them, for example, there was a glossary of terms, but peer support, peer mentor, a few terms, but it was different and challenging to you to apply in different culture language settings. So some languages don't have a word for PR, for example, they might have friend or something different. So we had to use, or in a way, the people the organization had to do workshops and discussing about what the word PR mean in their language, in their culture, including Auslan, for the deaf community, they came up with a standard PR. So they had a discussion and what peer means in their understanding and context. So sometimes there could be a word for some of the concepts in the language and culture. Sometimes there's not. So they had to kind of have a discussion of what those words mean, if that makes sense. And sometimes they're already doing peer support, but in different ways, if that makes sense, awesome.

Speaker 2  18:00  
So you learned a lot about all the kind of the meanings and the what we might say, the nuances of all of those words. So I'm sure we'll hear more about that as we go. So thank you, Aya. Next up, we're going to hear from Dr Chen Fung Tian, is a lecturer at the University of South Australia and her experiences is is in culturally responsive disability policy and practice for people with disability and their families from diverse backgrounds, particularly focusing on peer support networks run by and For people with disability and their families from diverse backgrounds, and also working with disability organizations who are working with those diverse communities for again, for culturally responsive practice and research on the International Chinese community. So Chen, welcome. We're going to hear more about more about all of your research in a little while, but I'll start with the same question, what is a lesson that you've learned? And you might start with a visual description of yourself as well, and then what's the lesson that you've learned, learnt from peer support.

Speaker 6  19:19  
Thank you. Cass, hi everyone. Nice to meet you all online. I'm joining today's event on the Ghana land. I'm from Chinese background, so the visual description I have black hair today. I'm wearing blue Navy sweater and an orange scarf, and also I'm wearing glasses. So what I have learned the most important thing from peer support is peer support is about human connections. So it means people help each other. Other by sharing their life experiences. So I see in peer support, we see the value in ourselves and also in others. I really like and inspired by this core idea of peer support. So I'm also applying this core idea in my daily life, helping my students, my colleagues and people I know, because I strongly believe that peer support help us, everyone grow and do better.

Speaker 2  20:34  
Thank you, Tian, that's great stuff. And again, we'll hear more from you. So we are, as we said, as I said, before we did ask people before today to give us some of their experiences and their thoughts around peer support and what it means, what, what works, what, what hasn't worked for people, are we going to share some of those responses, we do have some slides on the screen, and if you would like a copy of those later, you can have those as part of the follow up email that you'll get from after today. So the first question which you answered, those of you who did the feedback was, have you or your family member or the person you support, ever had peer support? And we've got a pie chart, and it shows that 75% of people answered yes, 19% answered no, and 6% were unsure. So probably we could say that it might be a bit of a biased sample of people who have chosen to attend this event and fill out the feedback. But Mandy, does this number surprise you at all from your experience?

Speaker 4  22:02  
Well, yeah, it does, actually, because, you know, three quarters of us have had a connection with somebody else who's living with a disability, or, you know, has a connection to disability, and then there's a quarter of us that haven't. So yeah, that's surprising. It would be really lovely if, if that whole graph showed that, you know, 100% of people living with disability had a connection to somebody else who's been going through the similar situation. So yeah, it does surprise me.

Speaker 2  22:34  
Thanks, Mandy, something we can all keep working on building those connections. And so we also asked, What did you learn from peer support? And we had some really great responses, and we've just highlighted a couple of those here on the slide. So we learned people, a person said that, that they learned that our experiences are not unique, even though we may feel alone and isolated at times, another response was resilience, confidence, building a sense of connection with others. That's what they learned through peer support. Other people said, another person said there was huge value in hearing other people's experiences and the power of being seen and heard. Another piece of feedback was self confidence, group norms and topics. That's what they learned from from peer support. And another person said, I can talk with other people. So baya or Chen. Do any of these ring true to you? Would one of you like to give us a response to those things that people thought they'd learnt from peer support?

Speaker 5  23:51  
Yeah, I agree with most of these, and they did come up from the research report that we did about building confidence finding information at the time as well, most of the Peter put groups were about the NDIS and sharing feedback and advice about trying to access NDIS and what you could get. And I think it's still happening now, but at the time that I would kind of taken over a lot of those Peter put topics that were being talked about. But I think it had evolved, and now that, you know, I think once you have like a place to make that kind of part of the problem solved, and then you can organize topics and meetings and what have you. But sometimes we also learned that it doesn't need to be a physical meeting. It can also be a network or online or caught up with friends, the kind of flexibility in organizing the people, but I get the meaning and the value of it pretty much similar for across a group of people.

Speaker 6  24:54  
I agree with Aya. So these benefits that you've. Covered, they closely reflect on a wolf we've heard from our research, from Australian Chinese people with disability and their families and also peer members from other cultural backgrounds. So nom de Linda mentioned that they benefit from peer support in terms of emotional support, whether it is in the short term, as you can see, they can talk to other people, or in the long run, help build up their self confidence and resilience. And they also mentioned that they gain new information and they learn new things from peer support.

Speaker 2  25:39  
Thanks, Jen, so it's really cool. We're all on the same page, which I think is great. So another question that people were asked is, What did you like most about peer support and the responses that we have here on the slide? For what people liked most said one person said the ability to connect with others who shared similar experiences a shortcut to connection as we didn't need to try and explain our situation. There was a common understanding of language and barriers. They liked that, that they get it. Other people get them. They liked a sense of connection with someone who has the lived experience the same lived experience. They liked regular catch ups and meeting others also trust and genuine mutual support was mentioned as well, so I'll get our panelists to comment in a moment, but we'll just go to the next slide, which another question was asked in the survey. And that question was, was there anything that you didn't like about peer support, anything that you didn't like. And some of the comments were, sometimes there are blind spots about how there are many ways to get to the same place. So sometimes blind spots around different ways to get to the same place. Another comment was, sometimes peer support spaces are rife with misinformation, as no one is an expert, and sometimes values are misaligned. Another comment was some peer support I didn't like was when a person had a bit of an ego and kind of said it would be my way, or the was their way, or it was the wrong way. So that was a issue that someone raised, and another person didn't like that. There aren't many opportunities for this. There aren't many opportunities for peer support. And another person didn't like that. Their group was defunded, the funding point is an important one, and we'll hopefully cover it in more detail during the Q and A so Would anyone like to comment? I'll open it up to any of our panelists. Would anyone like to comment on the positives or the negatives that are mentioned in the slide?

Speaker 4  28:19  
If I, if I can. Kathy, it's Mandy, yeah, I had an interesting experience with my peer support. I've, you know, I've been disabled now for 13 years, and it sometimes it takes a while to find the right group or the right connection. Early on, when I was still in hospital, I had a visit from a peer support volunteer, and their frame of mind wasn't really positive. And I actually found it really quite confronting when they came to visit, because I was really looking for that positive, you'll be fine, everything's going to be okay. Experience, and they arrived with a frame of mind that was more this is going to be really hard for you. I've been through a really tough situation myself, and I'm going to share with you how tough that was. So sometimes, you know, you do need to trial and error support groups. Maybe you won't have a great connection to start with. But you know, my experience over the time is I eventually found my people, quadruple amputees, that similar mindset to me, and that's where my real connection started up. Thanks.

Speaker 2  29:36  
Mandy, yeah, really interesting. It doesn't work all the time everywhere, and I guess that's okay and important that we acknowledge. So thank you. Another question on that we asked for feedback on was, would you do peer support again in the future? So for this one, we've got a pie chart with 91% answered Yes. They would. Do peer support again, and 9% answered maybe. So for the most part, it seems that people are having a positive experience. So we're going to quickly finish up with one more slide, and that was any kind of final comments that people made in the survey. So it's got a few quotes on the slide, just comments that people made. One person said, I'm not aware of any peer support programs. Another comment was, combining the goals and interests of a person can improve the outcome dramatically. Combining the goals and the interests. Another person made the comment that it was about visibility, self awareness and self acceptance, and sometimes these things need to occur before people actually access peer support, so we have to be ready for it. Another comment, which is a question was, how do we encourage people to come and keep coming? And another person suggested that the NDIA needs to develop a section on peer support. These are all really great comments, and we appreciate everyone that took the time to fill in the survey before today. So next, there are many different experiences of peer support, and we're going to get Chen now to give us a short presentation about her research looking at the benefits of peer support in the culturally and linguistically diverse communities. So over to you. Thanks, Jen, thank you.

Speaker 6  31:46  
Cath, good afternoon, everyone. Today, I'm going to share some findings about our research on disability peer support in culturally and linguistically diverse communities. We also call health communities. Culturally and Linguistically Diverse Backgrounds means that people from different cultural backgrounds, and many of them do not speak English at home. Today, I'm going to mainly talk about three things. One is disability peer support in health communities. The second is understanding of good peer support from peer members perspective, and the third is challenges to effectiveness and sustain the sustainability of good peer support. So first, I would like to talk about disability peer support in college communities cowed people with disability and their families face various language and cultural barriers accessing and using Disability Support in Australia. So when people face difficulties, they usually tend to seek support from their families, friends and people they trust. So over the time, some of these informal support networks are gradually developed into peer support groups in college communities, we see different types of couch disability support groups, for example, groups run by and for people with disability, or groups that put people with Disability and their families together. We also see youth groups and women's groups. So for some groups that are established and run by people with disability and their families, we see those people they are strongly committed to disability rights and the well being of their peer members. So the good part of these groups are they would listen to their peer members support needs, and they are committed to strong support for their peer members. But the disadvantage is, many of these independent peer support groups facing funding issues. So funding shortfalls in many times make these peer support groups to be struggling with being stable and around various activities to meet their peer member peer members needs. We also see some disability peer support groups are facilitated by disability organizations because these organizations want to better understand the support needs of child people. So the good part of. Of these peer support groups is their funding and support resources are more stable, but we also see mixed results from these peer support groups. Some peer support groups, their peer members didn't show strong leadership roles. They just joined the group activities. And we also see, because of the like high turnover rate of the staff, so they didn't give these groups very strong support until these groups become independent. But we also notice a unique example. One disability organization identified a group facilitator very early on and provide strong capacity building support for the group facilitator. The organization also provide ongoing funding to help the group build up their connections by funding some social events like a young child or outdoor activities, so when the funding ended, the group can still run its own in the long run under the leadership of that peer facilitator. The second thing I want to talk about is a good peer support from peer members perspective. So when we interviewed peer members from different cultural background, their expectations about good peer support are commonly centered around two things, one year's emotional support. So peer members expect to receive emotional support from people who shared similar lived experiences. However, they also mentioned that emotional support is not just like some struggles or the emotional emotions. Peer members also said that they expected to have some encouragement and positive emotions from their pen members, and another thing they emphasized is this emotional support gradually happened over time among members. It means that they feel uncomfortable to be pressured to share their life experiences. So it means that bonding connections happened naturally over the time. The second thing peer members expect to gain from good peer support is learning new things, however, like what kind of new things depend on different persons situations and their support needs. For young people with disability, they are expected to build up their ability to meet people at their age and develop their friendship by joining peer support groups when it comes to family members or middle aged people with disability, they normally mention that they would like to gain new information from peer support groups to help them better navigate The NDIS. The final thing I would like to talk about are the challenges that count, disability, peer support face at this stage. The first thing is how to critically challenge negative culture norms. We know that cultural values significantly influence the dynamics of disability peer support groups. Some cultural values are positive, but some cultural values, they negatively affect the rights and well being of peer members. For example, in our field work, a parent told us that she wanted to explore some government support for her child with disability. However, this support is closely linked with a culture taboo. So every time she brought up this topic, other peer members stopped her because they didn't want to talk about this topic. So the result is the mother couldn't find useful information and advice from her peer members within that group. So this is a challenge the. Second challenge is support for facilitators. We see that most of the support in place currently around money, help funding guest speakers or provide simple advice about how to run the groups. These support are helpful, but not enough to support peer facilitators to run the group in the long run, because these support are not providing facilitators with ongoing capacity building skills for the sustainability of these groups, and also they didn't recognize the time and volunteer work that these facilitators have made for peer support groups.

Speaker 6  40:59  
The third big challenge is the funding shortfall. Since covid, we've heard many sad stories that because of these findings, ended, many independent peer support groups or small community small community organizations, they have to pause or even cancel peer support group activities. If you are interested in our research, the first two links refer to the recent two publications, and also there is a research team in Social Policy Research Center at UNSW, they have done a big research project about good practices in peer support groups in Australia and also internationally. So the third links. Through the third link, you can find all the relevant publications and easy read resources developed from that big project. Yeah, that's all. Thank you. Great.

Speaker 3  42:09  
We're introducing two lovely, wonderful people, Roseanne and Romeo. Welcome. They are both involved with positive, powerful parenting, or PPP, which is a self advocacy group run by and for parents with intellectual disability, which helps people to learn their rights and build a sense of community. Cath, you can just stop me when you're ready. You're ready.

Speaker 2  42:31  
Great, yes, thank you. Jess, so they were both involved in a powerful short film about the experiences of parents with intellectual disability, and we're going to link to that in the chat for those who can access it, but also we'll include it in our follow up email after this event. So Romeo and Roseanne, welcome, and can I ask you to introduce yourselves and the work that you do and you might each give us a little visual description of yourself. So who would like to start for us?

Romeo  43:09  
Hi, my name is Romeo. I am the peer worker for positive, powerful parents. PPP for short, I have short gray hair and are wearing a black hoodie.

Speaker 2  43:23  
Thanks, Romeo. Great to hear that. And Roseanne, would you like to tell us? Introduce yourself?

Speaker 7  43:31  
Yep, hello. My name is Roseanne. I'm a parent member of PPP. I have brown, blonde, green, pink and blue hair and a black top.

Speaker 2  43:47  
Thank you. It sounds amazing. So would you? Would you like to tell us about what PPP, what it does what the group does.

Speaker 7  44:02  
We are going to do an interview. Style presentation, perfect. Hi Romeo, hi rojane. We are both involved with Power of Positive. Powerful Powerd, what does? What does PPP do?

Romeo  44:22  
Romero positive, powerful parents is a self advocacy group run by and for parents with an intellectual disability. PPP does training for parents about safe story sharing, running a safe group, and how to start your own self advocacy group. We protect the rights of parents with an intellectual disability. We connect parents with a disability across Australia. We share information and resources with parents. We have done training for child protection on how to support parents with a disability better. We have we created resources for parents with an intellectual disability, some of the resources are the short film like compare the compare the parents, short film booklets and cartoons. We run Melbourne and Gippsland Friday friendship groups and a national online group. Okay, what do

Speaker 7  45:42  
you do as a peer worker at PPP,

Romeo  45:47  
I answer and respond to emails. I run both Friday friendship groups in Melbourne and land. I make agendas for the committee meetings Friday friendship groups and the online national group. I co run training for parents about how to start a self advocacy group, how to share their story safely and how to run a safe group. I post information on Facebook for parents. I go to meetings with organizations that want to know more about PPP. We have traveled and ran training for parents. We support parents to be involved in activities. I support parents to learn about their rights. I support parents to speak up for themselves. Roseanne, I have a question for you, what do you get out of the support? At PPP,

Speaker 7  47:05  
hi Romeo, the first thing that comes to my mind is friendship and being able to communicate communicate with other parents who have may have or have gone through the same situation. Some parents have gone through the same situation as I have, and some parents are still going through the same situation I found. I found having PPP once a month is beneficial to have a safe place for conversations with people who have or are going through the same situation. If it wasn't for PPP Friday friendship group, I wouldn't I wouldn't have have known about self advocacy groups and resources and my rights to be a parent, I have grown to be confident and be able to share my story and my experience of being a mom within with an intellectual disability, I have spread my wings to be able to communicate for the rights of all parents around the world and

Unknown Speaker  48:32  
and for my children. Romeo, I have a question for

Unknown Speaker  48:39  
you. How do you

Speaker 7  48:43  
how do you support at PPP,

Romeo  48:48  
the way I do hear support is at our committee meetings and at our Friday friendship groups and on Facebook pages. When I am chairing a meeting, I go around the room and check to see if everyone is okay, or to see how everyone is going. We support each other when hearing hard stories and do a final check out at the end to make sure everyone is feeling okay after the meeting, I check in by phone to see how parents are going. I mentor parents who PT, PPP, have helped to start their own self advocacy group. Roseanne, I have a question for you, how do you do peer support at PPP,

Speaker 7  49:55  
if I notice a parent struggling, I go up to them. And ask them if they're okay, and if they would like to step out of the room and have a conversation. I asked the parent if they would like me to stay with them and continue to help them to be more comfortable to come back into the room. I also support parents who have different backgrounds and cultures,

Romeo  50:35  
and I have a question for you, would you recommend joining people joining a self advocacy group or a peer support group?

Speaker 7  50:46  
Yes, I would recommend people with a disability joining a self advocacy group or peer support because you're able to find out about information and resources you may not have been aware of, and it is a safe place to discuss issues, and you can make good connections and friends. Ramirez, Romero, I have questions. How do you fit? How did you first find out about peer support and PPP, and how can people find out more about it.

Romeo  51:43  
I learned about PPP by coming to reinforce and that's how I started with PPP. I have been a peer worker for the last five years, and are learning a lot from my peers. People can find out about PPP on our website, which is www, dot positive, powerful parents.com.au, and they can look up our Facebook pages, or if people want to find out, find a self advocacy group or pig group, they can go to put to the voices Together website, which is www voices together.com.au,

Speaker 7  52:41  
thank you. Thanks for listening to us today.

Speaker 2  52:45  
Thank you so much, Romeo and Roseanne, you guys are doing some really important stuff and really remind us of all the things that peer support can offer us and that we can contribute to it as well. So thank you. We should definitely all check out your short film, and I think that's been in the chat, but also we will make sure that the links to that are are in the follow up email that we'll all get in the next couple of days. So what a lot of fantastic stuff we've we've been hearing lots of food for thought, I'm sure. So let's have a 10 minute break, just to give everyone time to take a breath, grab a drink, do whatever you need to do. We We do hope that you'll stick around and come back for the rest of the discussion.

Speaker 1  53:39  
We're listening to the disability dialog webinar, connecting to community peer support. We'll hear from David Young. It is a peer facilitator in the Australian Chinese community in Sydney, published a peer support group run by and for Australian Chinese people with disability and their families in 2018 now includes over 70 peer members.

Speaker 8  54:10  
Hello, everyone. This, David, this back to the 2018 or something. That's first for the NDIS rollout for my area. So it's based on New South Wales, Sydney hotel area. So at time, I found that you know many Chinese background parents, they are, struggled to assess the information and for the NDIS. So at time I worked for the volunteer at salvation, i. Me so I know some organization what to do for the things. The things is for the you know, the parents you know the most come from China and the language barrier and community assess barrier, all the things added up for the parent, don't know, don't know what to do. And most of my group, the people with disability at time, is at the young age, but they suffered for the mental health problem or the autism, so they can't do anything by themselves and their Parents is, you know, the lack of all the needed assess. I'm not seeing the help. You know, the help everywhere, but they don't know where to assess this and look for the help. So that's really backlash. For the people, so I set up a Chinese disability peer support group try to help the parents to know more about the local and community information government and disability information or something. That's why I start for the group.

Speaker 6  56:53  
Thank you, David. My next question is, could you please share some big moments for your group as a whole, or for yourself as a peer facilitator, yeah,

Speaker 8  57:06  
my group, you know, they started with just a few people, like maybe less than 10 parents. Now I have the more than 40 family in my group, and every you know family, they have at least one child, or the young adult children you know the for the disability, or some people, some family, may have two or more than two or something. So that's really for my group, the growth, you know, the things, is now a time, you know, when first start with NDS, so that people know the right and the government policy. And another, you know, the organization to there to help us later found the you know, the they have all the problem for the like, the center link and housing all the thing you know the most people, if they struggled, and thinking of a lot of people after the like, I don't know another background for the Chinese, you know, the background most people, you know, then they have the kids like that. They must become a single mother and look after the child or children. So they have them all the problem, you know, the not only for the NDS, for the almost everything, and even they got in the, you know, it's really hard to get the NDS, you know, even you got in the funding, all the things, like, even afterwards, you find that, you know the treatment and the specialist, they also have the problem. But another thing is, for the group, you know the time we have to, you know, the parent thing is okay. Maybe can not need too much money. May just do all the volunteers to let people know. But at time, you know, sick, maybe seven years pass, you know, the keys. All get time become a young adult. They need to get more help or education for the to assess to the workforce or the you know, the adult life. So now, for them, you know, there's no funding all the things, really hard and really hard for the all the young adult children, all the things, and, you know, the for the year, I try to find some funding that I don't understand. Sometimes I know, like I've talked talk before, like all the our parents don't know how to assess the nds. Now, for me, the problem is when we I'm a disability, mentally disabled person. Okay, so for us, you know, our the disability people run the disability organization, the peer support is really hard to get the funding. And I see a lot of organization. They easy to get. Then they apply for that one you need to find a writer. That's really, I don't know why you know, maybe the bureaucratic or something, they not knowing how to do the help the disability based the organization or the human life group, just like me, I'm truly to say this money, you know, government have so much money to put in the all the, you know, vulnerable people, like disability people, but may not directly get that one they think that they Put all the things to get, get support, the employment. Not, not if we apply for the I don't know why it's so hard to for that one, but I have the people, they it's so easy to, like, drop our money to the things, yeah, this should be some people like government, listen to that one, and the people manage the funding. They should directly. You know, in contact with us not see the I can't afford a writer to help me to write that application. There should be the people. They should come to us to know, you know what we did and what we do?

Speaker 3  1:03:09  
Yeah, David and Chad, do you mind if I interrupt what I'm hearing for you is there's a lot of struggles. As someone who helps peer parents and people with disability to try and understand all of the systems and everything that is happening, and your peer support group makes that a little bit easier, but there's still lots of problems,

Speaker 8  1:03:26  
yeah, because of language, you know, easy for, you know, the people I just tell you, you know, even they have the interpreter or something, yeah, they are focused on the disability. Yeah, they have a meeting. They book. They not professionally, but they don't know this area, a lot of things, you know, they can

Speaker 2  1:03:53  
write, as you said, Jess David and Chen, lots of really important issues that you've raised. And I'm sure we'll give you ways to follow up if people want to stay in contact with you. So thank you. But Mandy, we would love to hear again from you. Your story's so interesting. I know you've been contributing to the chat a bit, so I can't access all of it, but I know that your name's popped off. So feel free in this next bit, if you've got anything that you want to kind of add from what people, what you've noticed from the chat, but we would just love to hear, I guess, particularly around, what do you think peer support looks like for people? I guess, new to disability,

Speaker 4  1:04:41  
yeah, so the news to disability is a different space, because people go through stages. They need support in the very early stage of their situation, and a lot of them just want to tell what they've just been through. So it's a lot of processing and. And you know the experience that they've just had for them, and often just to say it out loud to somebody else who understands, is really important. And then the next stage they go through is learning what support is available and starting to reach out and connect to those supports and then understand how the system works. Because, of course, the disability sector is a very complex system. And then once they've sort of done that, they start sharing their success stories about, you know what they've achieved, and you know how they're moving forward. And there's a real pride in the ability to do that. And then as they sort of work through the stage, I find that they become more independent, and they might even just move away from the peer support group and go along with their lives, or often, those people that are having that success and getting that independence start supporting the next cohort of people that come through. So that's where we, as you know, as peer support organizations need to grab those people and capture them whilst they're feeling empowered to share their successes with the next cohort of people that come through. Yeah, so that's what has been my experience. And there's been quite a bit of conversation through the chat about what about regional areas? And the work that I'm doing with get started is we're trying to set up support organization, support, peer support groups that are locally based in neighborhoods. So we're working with councils to actually get that embedded in council areas so that it's very much in your neighborhood, rather than the type of disability that you have,

Speaker 2  1:06:42  
it's fabulous. I'm really keen to hear from you briefly, too, about how do you think that your informal peer support helped you to build and I guess, to have those perhaps more informal experiences, but then work to develop get started, which perhaps offers now more formal structures for people.

Speaker 4  1:07:05  
My informal peer support really started in a pub. We got a couple of board ads together, and we bought our families with us, which included little kids and everything. And quite literally, we sat around a table that was covered in various body parts of prosthetics that were the people had pulled off. And the joy that we had in just being in a group together and laughing about literally a table full of body parts was great. And so we said to each other, well, we must continue this, you know. And we all knew somebody else that was going through a similar situation. So we started a Facebook page, and that was the quad squad, and now we've got 400 quadruple amputees from around the world. So it can be really casual, it can be really sort of organic. It doesn't need to be very structured. But, you know, we as a community, we need to have structured peer support so that we don't have people slipping through that system, and we pick up that 25% of people that haven't had a peer peer support connection.

Speaker 2  1:08:10  
Thanks, Mandy, I am a little bit not that I want to encourage drinking and inappropriate, excessive drinking, but I do like to call it beer support when it happens in pubs. So yep, it's really important that we offer both, isn't it, the maybe the more formal things for people who prefer that, but then, yeah, can't get away from the magic of those really informal ways of getting together. So thank you. We would love now to have a bit of a chance to hear just a few minutes, I guess. Jess, I'm wondering if you would like to maybe summarize the chat. Maybe pull out any, pull out any, any themes that we might want to quickly ask our panelists to respond

Speaker 3  1:09:02  
to it. Sure, there are actually some really amazing themes coming up, but we thought that what might be useful is if we address one of the questions that have come up a few times. And Tina, I can see that your hand is up, and I know you've been really patient, we literally have six minutes to go. So what we've offered is that we'll continue this conversation later and maybe stay on and get people's email addresses so that we can make sure we catch people's thoughts. But the big thing that's been coming up is there's a few people really interested in what people have done around the struggles. So how do they handle things when issues come up, when there's difficulties, difference of opinions, the way, you know, people want to do things is a bit difficult, and cam was really clean to hear some tips and tricks. So if anyone Cath, I guess first for you, because you've been doing homework for a long time, would be handy, and then any of the other panelists

Speaker 2  1:09:48  
so tips and tricks around what to do when things get tricky. Yeah, absolute. K, well, I might start and then feel free if our other panelists. Just want to join in and Romeo and Roseanne. You might have some tips. I noticed you did some really good things. You mentioned some really good things that you do, like check outs at the beginning of your sorry at the end of your meetings. I think they're really important. You talked about Roseanne offering people the chance to step outside of the main peer group and have a have a talk. You know, in another quiet space, they're both really important strategies. I think the other thing, actually, I think it came up in someone's feedback that from our survey questions was that one of the other things that's really good to offer is the chance to it's just completely slipped my mind. I'm so sorry. I'll think about that again and jump back in the Yeah, it's gone. Happens. Sometimes they're some of the ones that I have noticed a really important sort of it's come back to me. Jess, you'll be pleased to know it's the group agreement. So whenever a group of us are gathering as peers in a space that we want to be really mutual, there's no kind of bosses, and we're all in together. There might be someone sort of facilitating. But what I think is really important is that we have what we call a group agreement. Some might call it housekeeping. Sometimes we like to call it something as simple as how we work together. And then when something's not going well in a meeting, someone might be, you know, acting or being in a way that's not comfortable. You can go back to those group agreements and say, remember we talked about the importance of being respectful, or, remember we've talked about the importance of not interrupting. So they're some of the things that I think of when things are going a little bit pear shaped. Does anyone want to add anything from the panel, or or anyone else want to throw something in chat for jester feedback?

Speaker 5  1:12:06  
Yes, what in my community work my volunteer role is that I try to kind of organize things for people I definitely have hearing from different backgrounds, but mostly Muslim background, because we also feel like there's a gap, and it could be challenging, because we do get support from other people and other communities helping us, but it's hard for us to kind of set up our own like peer group. We don't have like an organization. We don't have sometimes we organize things, everyone come together. It's amazing, but it's not our like job or our role. So how do we keep it going? Or how do we, you know, like, get resources and support to keep it sustainable and ongoing, to do, like, monthly, because I think part of it is everyone had different jobs or no time to do this as their job. So I think that's something to think about, is, I like how we talked about before, the structure and informal, organic nature of the group, but something also like having one or two people to being like the main job for them to keep it going. If that makes sense, I think that's something that we all can kind of agree on,

Speaker 2  1:13:14  
that that sense of it being someone's actual role, and that's another really way of valuing the importance of peer support. It be we need a coordinator. I think those of us will anyone who's tried to be part of more than one group, or even the first group. Yeah, it's good if we have some leadership. And I guess peer support is a great space to develop that leadership as well.

Speaker 3  1:13:39  
So there is absolutely some chat about how we develop leaders and what that might look like for our future. So what are the things we can think about, in funding people, in training people to make sure we're constantly growing leaders, which, as we all know, some of our pet favors in the world. I'm also really conscious that Tim, you've got your hand up and you've been waving around, and it's been really hard apologies, because there's a million of us trying to do a million things. This will be our very last question. I'm going to unmute you. Hi, Tim,

Speaker 9  1:14:10  
quickly, some quickly notes with PP. With PP, we need to think about more inclusive, more independence and more independence. Some areas we need to have right now, in the PPP, in Northern Rivers, in PPP areas as well. Let's be exclusive importance to that. And I think we need to start talking soon about December, month, instead of December, which is a big international day, is coming up, so we need to start talking about that. Yeah, I was praying for a while to tell you that, because it's very important conversation to think about, and I want everyone to think about. But anyone's on PPP, we managed to start, you guys start a film or conversation in the film, and say, what's more important in your community, and why is, why is the impact to you, and why your your feedback on the film to make into our community. What do you think about that?

Speaker 2  1:15:23  
Kim, there is so much great stuff there. PPP, you are just charging on. Keep up your fabulous work. I love that you mentioned International Day for people with disability. So as we finish off today, what a great challenge. I think we could. I'd like to back you up, Tim, why don't we put out a challenge that let's all find ways to highlight the power of peer support in the International Day for people with disability 2025 we came up with it here at Disability dialog. So how cool might that be? Do just want to say a huge thank you to everyone who participated in our discussion today, our panelists, in particular, everyone who contributed to chat, all our supporters behind the scenes and on screen. We run these events regularly, and we really want to hear your ideas on topics that you'd like us to talk about in the future. So keep those coming in chats, in an email, completely put it in now and then. They're monthly events. So we hope you can join us next month for more debate and discussion. We'll let you know what we're going to do next, and we'll be sending out an email, including, you guessed that a feedback form after the event or you can click through now from the form in the chat. Always good to get your feedback straight away, I reckon. So, yeah, let us know your experiences. Keep telling us how we can make it more inclusive. And don't forget the email info at Disability dialog.com.au, thanks all so much for a fabulous event. Look forward to catching you next time. I'm kathmani, we'll catch you soon.

Speaker 1  1:17:21  
That was an audio presentation of the disability dialog webinar, connecting to community peer support. This project is a joint initiative of Dana inclusion, Australia, Alliance 20, and the Melbourne Disability Institute, and is funded through an information linkages and capacity building ILC grant from the Department of Social Services, DSS and grant funding from the community broadcasting foundation. For more details on this initiative and upcoming events, visit disability dialog.com.au this has been an audio presentation produced by Vision Australia radio.