Episode #112: Aphasia 3D: In conversation with Dr. Assunção (Maria) Matos and Paula Valente

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets. 

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Paula Valente and Dr. Assunção (Maria) Matos from the Portuguese Institute of Aphasia (IPA). In this episode, we'll be discussing Paula and Maria’s role in building three dimensional social, LPAA in Portugal from the ground up.

Biosketch:

Paula Valente is a Speech and Language Therapist, social entrepreneur and responsible for the creation of IPA. She realized that there are important gaps in the therapeutic interventions that are offered to the person with aphasia in Portugal. With the support of partners in Portugal and in another countries, and with a team consisting of a speech therapist, a psychologist, a social worker and volunteers, Paula is convinced that the path will not be easy, but it's possible.

 

Dr. Assunção (Maria) Matos is a Lecturer at the University of Aveiro in Portugal. Her work is grounded in the WHO-ICF model and social, LPAA approaches to aphasia rehabilitation. As one of Paula’s teachers, she influenced the development of the IPA and is a crucial partner in the innovative programming that they offer.

Take aways:

• Shift to Social Approach: SLPs in Portugal moved from a medical model to a social approach in aphasia intervention, realizing the limitations of traditional speech therapy alone.
• Comprehensive Support Program: EPA in Portugal offers a wide range of services, including therapy, psychology, and caregiver support, aiming to enhance the lives of people with aphasia and their families.
• Limited Services in Portugal: EPA is the sole organization providing such extensive aphasia support in Portugal, serving the entire country, with an emphasis on online services to reach distant regions.
• Professional Training Focus: Assunção Matos emphasizes holistic training for speech-language pathology students, preparing them for diverse practice settings by exposing them to various intervention approaches.
• Fundraising Challenges: EPA faces fundraising challenges in Portugal due to limited access to funds and philanthropic support. To sustain their services, they generate revenue through clinical services, therapy programs, online courses, and book sales. They also have associates who contribute annually. Despite challenges, they are working to demonstrate the effectiveness of their approach to gain government support for sustainable funding.

 

Interview Transcript:

Jerry Hoepner: Well, it is my privilege today to have a conversation with Paula and Maria. So, we're going to just begin talking about the programming that they've started within Portugal. And I'm just really excited to have this conversation. I think this is a unique conversation for aphasia access. Because we're really get to talk about the process of building a program within a country from the ground up from scratch. So, I think we're used to stepping into this process partway through and again. This will be a really fun conversation. So welcome, Maria and Paula. And yeah, welcome to Aphasia Access.

Assunção Matos: Okay, thank you. Thank you, Jerry, for the great opportunity of being here with you, sharing our experiences and our dreams. It's an honor to be here with you. Honestly, thank you.

 

Paula Valente: I make my [unintelligible]. It's the same. Thank you very much.

Jerry Hoepner: Absolutely. I have to say I was really privileged to have some conversations with Maria and Paula at the IARC Convention in Philadelphia last spring. So got the opportunity to meet there. And obviously really interested in learning more about your work and programming that you started in Portugal. So. we were talking just before this podcast about your name, and then you call it the EPA or the I.P.A. I was saying that in a in English we'd probably call that the Portuguese Institute of Aphasia. But I'll let you explain the name a little bit from the Portuguese standpoint.

Assunção Matos: So, IPA is Instituto Português da Afasia the so it's exactly what you were saying in in in English. I.P.A. is known as EPA all over all over the country and it was decided to call the association like this? It was actually it was Paula's decision. Paulo, do you want to say something about it?

Paula Valente: No, we just at a name to our legal name is another one, because in when we did the registration of the organization, we had to choose another name. So, our name is Afasia. It's like, if IPA. Afasia Epaphazia. So, our organization of the legal name is Epaphazia. But the trademark Is Instituto to Portuguese Epaphazia. That was the Portuguese Institute of Fascia. When we choose this name it was a little bit scary, remember, as soon, so I don't know if because we were afraid to do. To tell people this is a big thing we are a Institute is an institute is a reference is something that sounds like very credible. And we want to do that. But at the time it was the beginning, and we were like, I hope this will work. So was like, okay, let's do. Let's do, Let's do this with this big name, impressive name. And what's also a strategic name to show the people that we were doing something with something good, something with good basis and good principles, and the with and impact to the person the people with the afasia. So, we were a little bit afraid at the beginning, but with the responsibility we were taking. But I think it was the right choice.

Jerry Hoepner: Yeah, I agree. I think it's a great name and thank you for filling in a little bit of that background. In full disclosure. There's no way I could pronounce the Portuguese version of that name. So really happy to have you do that? But yeah, this really speaks to that kind of building from, you know, from the ground up from scratch. Paula, I'm interested in a little bit more on that. How did the EPA or the EPA come about?

Paula Valente: Okay. So, I was. I've been a speech therapist since 2008, and I did my practice with a Assunção. She was my teacher in the hospital and maybe she can tell a little bit. She influenced me at the time because when I finish that practice internship, I was convinced that my mission, my life mission, and my professional vocation was to work with people with aphasia in a socio model or in more psychosocial model, because she taught me that in the hospital. So, from there I study about that, I did my master in that field like my master. I'm sorry about my English, so try to understand me, please. My master was about partner training aphasia partner training, communication training. And from there I was convinced that I had to do more to help people with the Aphasia to live better, besides the aphasia I was working at the same time in hospital context, public one. And I was also working in a private clinic with patients with a phase. So, I saw the difference of get to work in more functional and communicative way with the people, with the, with the person, with the patient and his family, and in a medical model. So, I was seeing the differences I was studying, and I thought no, I would love to help the people with the aphasia to in Portugal, because I was also understanding better the public services to this, this to these persons to person with aphasia, and I started to feel that I could do more. Something started to make me dream about a common community program or center and at the time I had to I did the A social internship course, Intensive program training program that give tools that I needed to start making my dream a reality. So, at the time after I did that social entrepreneurship course, I said goodbye to my jobs and I started a pilot project. The name of Pilot project was Aphasia 3D. Because at the time I thought already to work in 3 dimensions, person with aphasia, family and friends and community. So, to achieve a better life with the aphasia I needed to working that 3 levels. So, the pilot project was aphasia 3D was the name but when he I did my pilot project I called was from Zoom at the time she was my teacher, but also she gave me orientation in my thesis master thesis a project and I call, and I talk. I talk with her. We had a conversation about these, and she was a big supporter. So, she at the big since the beginning, she told me. Paula, I am with you and I will help you. I will be on your side. Let's go. So, she was very, very important. Since the beginning, since everything I don't know. So, add in the final of that. Here the pilot project began and we started to invite some people with the aphasia, some family members, some friends of mine to be the social organization. I don't know. How do you say in America. But we, when we, we have to have a group of founders to register our organization to founder organization, we have just say, let me see. I think it's the Board of the Association. Yes, it's like we have the board. We have a structure and we invited people to do that with us. And then, born the organization the ONG EPA institute together the maybe I can now talk more about what we do but maybe someone can explain better how she influenced me to do that, because is also our passion.

Assunção Matos: Well, first of all, first of all, I think I need to do a clarification. My name is Maria. I'm also Assunção, so when Paula is talking about this and some, I'm the same person to say and all other people from other countries, what can I say? I started as an speaking language therapist in the nineties and my first job as an SLP was in a cerebral palsy center with children and their families and indicators and in this kind of center we were very already at the time we were very focused in intervention, on communication. So, it was really common to work with the children, with their family members with the augmentative and alternative communication systems, low high technology. So, this was very common for this population already. So when I changed my job 2 years later, and I went to a central hospital with people with aphasia, my idea of working as an SLP was, you know, focused in communication, and not just in speech or language but thinking about people with the aphasia at the time. The medical model of intervention was the strongest one in hospitals in Portugal, maybe around the world. I'm not sure so when I started working with my patients, I thought I have to do more. This is not enough, so I was not happy about what I was doing, because after months and months of therapy my clients, they were just looking the same. They were not improving their functionality, or they were not doing their lives, as I thought they could do if I did something different. So, I start looking. I went to congresses. I went to the International Society. How many different alternative conferences by the time in the Netherlands, and I started looking, for no one uses AAC with the people with the aphasia So I started also looking for papers, and then I could find Linda Worrall, Aura Kagan, Audrey Holland and I started dreaming. So, policies, EPA is my dream, and I used to say that Paula did what I wanted to do, and I was not able to do because I couldn't just quit my job As she did so, I started at the same time I started teaching in the SLP course and in 2000 the ICF appeared. I'm trying to jump, not to be too boring and everything made sense to me. So, I started looking for different ways of working even at the hospital, and I started bringing the family, bringing the family members to the hospital. I started them trying to train my patients with the total communication approaches. I tried to do my best, because it's not easy in a medical context, you know, to change minds and to change in. That's why, Paula, she's saying she came to me as a student. I was doing this this kind of job. I was trying to apply what I've learned from AAC and children with cerebral palsy, and I was doing some experiences with my patients And also suddenly I met some people in in the Isaac Conference that I told you about few minutes ago and I got involved in a multinational project where we were trying to develop a specific software for people with aphasia to communicate better with a portable AAC device, I can say I'm very proud to be involved in in that project. And so that's how I started. That's how I started.

Jerry Hoepner:  That's fantastic. It's just been fun listening to your story kind of a microcosm of things that have happened in other countries, I think, in terms of moving from the sense of the medical model isn't meeting the needs of the people that we're serving. I heard, you know, just a little bit of some of my conversations and everyone's conversations with Audrey over the years so we shift from a very medical behavioral approach to one that is more of a social functional approach. I can just hear those same threads kind of being woven into your stories. And just really, really interesting, I mean.

Assunção Matos: Sorry. Sorry, sorry, Jerry. It's just to say that in Portugal no one was then I know no one was working in this swaying, in a more social approach. And Internet wasn't like it is today. So it was really hard to get access to the papers. But I also remember buying the book beyond the fascia from the connect in London and I got in love about connect. Yes, I still have it here also. And I decided, I said to my husband, I have to go to London, and I decided to go to the connect and see how they were working, and do the training the trainers course that they were that they were well, I was trying. It was hard, but I was trying to do it in a different way, because I could see my patients after months and months of therapy linguistic therapy it wasn't enough, and I felt I have to do something else.

Jerry Hoepner: So insightful. And I think so many people have come to that conclusion about social approaches and the life participation approach. That Doing those impairment-based pieces alone is just not enough right? Not that they don't have a place, but alone. They're not enough. I think it's really great. I was thinking about Paula's thesis on communication partner training, and how that must just sprung out of all of these discussions, and certainly just central to a life participation approach. The other thread that I kind of heard from both of you is this idea of the dream that you started to have to create something to fill this gap? Maria, I like the way that you said that? You know you started dreaming, and Paula made that dream happen.

Paula Valente: Maria knows that I am the crazy, 2 of us is necessary courage conditions of obviously, because as the sun sounds said I was married. But I didn't have children yet. So, at the time I thought, Okay, it's now or never, because soon I will have my family, and it will be very difficult for me to do this kind of choices to quit my jobs. Goodbye, my jobs! No, so it's now, and never. My husband was still in love with me so at the time was easy to convince him that I wanted to do that. I quit my job at that time. For the beginning of EPA. I was doing voluntary work. I did all without receiving anything, so that was not easy. Choice but it was necessary. A little bit of courage and a little bit of  craziness like I was. We were doing something that's in Portugal. We don't. We didn't have a big organization behind us or supporting us. So, in terms of giving us the structure or the security to do something. So, It was like doing a house from the 0 from the ground, so didn't have any money at all. So, everything was started from the 0, and it was a little bit scary. And III admit that I was a little bit crazy, but I think and persistence, because the difficulties were, and they are so almost 9 years later it years later, 8 years later, we are here but this is a big adventure, and he in still is

Jerry Hoepner: Courage, persistence, a little bit of risk taking I'm not going to say that you were crazy, but those are things that help you move it along, and I can see now why you so connected with Maura Silverman and the Triangle of Aphasia Project.

 

Paula Valente: Yes, she was the biggest, when I started. I also. II remember very well to be on the aphasia, because the book, because when I started, my internship gave me the book to read, and I was like I come from the school with a medical model mindset, like language and speech, and she gave me the beyond the feature read this. And let's think about this in your internship. So, when I started to, okay, let's think about these programs. This center I went to connect also was my first experience with the center personal experience. And then I contact there numerous centers around the world, mainly in America, of course, but also some here in Europe and Australia to learn from them, to learn from the programs, to learn about the programs, about the social, the about the business model, how they sustain their activities, how they communicate with the community, how they articulate with another organization. So I did a lot of contacts, and I talk with many people and Maura was one of the most the most easiest person. I don't know how to say that sorry was very available, and she talked and she wrote a letter of support. She was incredible, so that was very important to me at the beginning to start to organize the structure of our programs. I can explain how we work at the moment. what we do at the moment. But I want to say also that many things have changed through the years. We learn a lot with experience, with the errors, with the feedback. That person, either. Persons with aphasia and their families told us so. We learn every year we did changes about the protocols, about the instruments about the programs, about the number of persons that we involve, the number of Anyway, many, many changes were done. And I think we will. We will do that kind of adaptations along the way, because they are very important to achieve our goal better. Okay? So, we have to listen to be aware of the impact, the results. The feedback is very important to getting better. Okay? So, what we do now is, I think our better version of the programs but I think maybe in 2 years we will be doing things differently.

Jerry Hoepner: That makes sense and I think you approach this whole process in the right way by connecting to those people. And you know everything you said about Maura rings true, right that she's available, and she is excited to get me going and to share my knowledge. So why, so I would love to hear about what you're doing right now. I think you said 9 years it's been so...

 

Paula Valente: We, 1916 was the founding year. I started the pilot project in 2015. So, I quick myself therebefore. So, it's almost 10 years in this adventure. It's all. But the organization is only 8 years. So, when our main objective with our association, our mission is to improve the quality of life of people with the aphasia and their families so to do, that we have to we organize our working 3 targets out all the targets. Population. Okay, audiences. Okay, we work with people we work with. And for people with aphasia themselves we work with and for family members and friends and we have we have to work to the community to a more inclusive and community communication accessible community. Okay, so we have activities actions in the these 3 main, groups. Okay, for these 3 main groups for the people with aphasia and the families we have. Hmm, 2  responses. Okay, we have resources and information we wanted to give them the more resources, more information about the aphasia, about how to leave with the aphasia, how to recover the path that the different teams that are important to them to learn more about what aphasia is  And now to leave with the aphasia So we work a lot to offer to Japanese to offer resources and information in our websites in our social networks, with lives in the Facebook, with conversations online, with the workshops, with events, to talk about aphasia, to inform, etcetera. So, we work a lot to give them resources and information free for free. Okay, that's when before EPA, It was very difficult to them to find anything in Portuguese. Okay? In the Internet, or in another ways, in books or in La leaflets, leaflets. Okay? So, they didn't have many choices, many options. So now they have. If they go to our website, to our YouTube channel, to our net, Facebook, page, Instagram, they have videos. They have aphasia friendly videos. They have informational videos. They have testimonials. They have documentaries. They have many things in English that we put legend, subtitles. So, we work a lot in this field of information and resources. Okay at the same time for people with aphasia and families, we develop programs. Okay, you call programs in America and we in Portugal, we don't call that programs but we called like therapies. Okay, it's more the term for us. Your programs for us. We call therapies. We develop different therapies to give responses to the aphasia, the necessities, communication, necessities, and the goals of people with aphasia ask us for help. More concrete, more rehabilitation help. So, at the beginning we were doing only group programs. Okay, with many different types of groups. Okay? But at some point, we saw that was not for some people that was not sufficient because they needed help to communicate better, to develop resources for themselves, to adapt better to aphasia to work some psychology, psychological problems or family problems. So, the group conversational groups, communication pho, functional communication groups, they were good, but they were not, some of them to respond to their particular needs. Okay? And we started to do individual sessions with them also. So at the moment we have like a program, a response to them. So, it's like a service. Okay? That when people with aphasia ask for our help to live with aphasia, to have speech therapy. They want to. They ask us for a specialist. So, they see if a specialist team, so they ask us to help them. So, the first thing we do is an assessment, and the that assessment includes not only the language, the impact of aphasia on the language domain, but also in the participation activities like psychological states, family members, networks social network so we have, we do a global holistic assessment and then we have a reunion. We have a session that we call decision reunion. In that decision reunion we discussed with the person with aphasia in an aphasia friendly way. So, with communication, support to conversation, communication and we show the results. We explain what the evaluation show us and we discuss in in with them their main goals and then we make together a plan and that plan is not only to do things in EPA is not that focus. So, the plan is out. What I can do at the moment to feel better, to achieve my goals. Okay, something, some things they can do with our support. But other things they can do outside. So, we also give them another options. We talk with another professionals or organizations, and we help them to make decisions and go through the process. So, if they want to do something with us, we have only three objectives in the center of the process. So, everything they do they do to achieve the objectives that were clarified in that discussion in that conversation initially and then we start doing. They can do with, not with us individual and group sessions of speech, therapy, psychology, neuro psychology, communication training. All of these approaches are personalized. They follow the pace of the evolution of the person and their needs. And we also and they are all very different. So, some of them do only individual start from start doing only individual sessions. Then they go to the groups. Some of them do only groups, some of them do groups and individual. It depends on their path, their situation, their goals, and the in the continuum of care. So, where they are okay, so with the family members is the same. They are very involved since the beginning, so we will offer to them individual or group sessions that go that will help them in their needs. So, from the beginning and along the way we are always talking with them and give them what they need. So we have also caregiver groups and communication training groups and communication training individual sessions everything to promote adaptation to aphasia, to improve the relationships, the well-being, the success of interactions. We promote also meetings with people with the aphasia, and there, another with them. Sorry. We promote. Provide also meetings with another family members and in in group sessions it makes sense. Sorry about my English.

Jerry Hoepner: Totally makes sense, Paula. Well, you have a just a breadth of services that you offer, and I know those have evolved kind of over the years, but very collaborative, very person centered. It seems like, you've really thought this through. You've obviously brought upon a lot of resources to do that. A couple of things I wanted to know. One is you mentioned those video resources and other resources. We'll make sure that those are available on the show notes, so people can connect and check those out even if like. I watch some of them and just to get a little taste of what they look for obviously, I don't switch Portuguese, but just valuable just to have those resources. The other thing I'm wondering about is what's the area that you serve. I mean because it seems like you may be one of the only collaborative social programs in your area.

Paula Valente: Yes, we at the moment. If you want to say something, please interrupt at the moment we serve. All the country we are. We are not a big country, but unfortunately, people with aphasia in Portugal they don't have many choices, and after the rehabilitation centers or the care the main public centers that in the acute phase they go, they get, they go there, and then they go home. When they go home, the choices to continue the rehabilitation are very few. And we in Portugal we are the only organization that are doing this work, and specifically with aphasia. We people with aphasia. So, we receive calls from all over the country and, but we are in Portugal and that is the second main city in Portugal. So, we have Lisbon. That is the capital, and then we have Porto is another big city, but in North and we are in Portugal. So, we can't see everyone in Portugal, mainly the people that live near us but with COVID we started to do many teletherapy and now we have almost 50 people with aphasia doing online services. So, at the moment, we have also online groups and individual online sessions and consultation sessions that are like a specialty consultation that we do to that families that only want some someone who helps them to decide things to understand what to do next, and that help us help them to decide what to do. So, we do a lot of consultation sessions that are more periodic and we go through. We. We've talked to them through the year to see how things are going. and to give them more information about what they should expect from the rehabilitation, from the therapist, from the communication, and give them psycho education, but also orientate them. We do a lot of that kind of in-service. Okay. So now, we have many people in our presential activities in our center. But we are the only organization in Portugal. So many people from other cities are asking for help and we are trying to go to Lisbon to create some groups and some enlistment. But Lisbon. But it's something that takes time. Okay, so it's another something that will take some time to happen. And this year as soon sound, Maria will start a group also in the university. So, it's something this kind of different points of presential group. Presential groups. I think, will be the next step to give other options to the, to the persons with aphasia in Portugal.

 

Jerry Hoepner: Wow! What an incredible breadth of services, and literally in in terms of area. I can't imagine serving all of the people with the face that in State of Wisconsin, which is probably smaller than Portugal. So that is that's really incredible. And wow! What a service! And I want to shift gears a little bit and talk about training professionals and students, because I feel like that might be an important step for having a broader network of people that concern people with a phage throughout Portugal. Maria, are you willing to talk a little bit about some of the trainings that you've done with professionals and your connection with the university and training students?

Assunção Matos: Yeah, yeah, I can only tell you about my experience. There are other schools SLP, from my perspective. What I tried to teach my students is a bit of every type of approaches, because in one side, I know that when they go to their practices, they will find some places where the medical model is still very active, so I have to prepare them in order to know how to work with people with the phase in a more linguistic approach. But at the same time, I try to tell them about social approaches and about live participation approach. And II it's not easy, because I don't have much time to do it. But I try, you know, I'm a really big fan of the ICF so I try to prepare them to know how to work according to the ICF and how to work in the different domains the ICF suggests at the same time. We have established the Protocol with the IPA at our university, the University of Avairo. So, my final students, some of them those who want to work and wishes to do their practices in the field. Some of them are going to the EPA for 16 weeks and they do their practices there, and also during that that the time they have to develop an investigation project. So, most times I try to see with Paula we share the needs of the IPA, and we try, you know, to go and to work with the students and try to do some investigation that has an impact for the EPA and for the colleagues who work there. And this is this is great work. At the same time, just to finish me and Paula, we have been doing the SCA. The supportive conversation with adults in Canada and since then, we are doing lots of lots of workshops with the health professionals in many different hospitals. I'm also trying to do some investigation about it, because we don't have it in Porto. Well, so I tried to involve my master students and we are, you know, working together, trying to change minds trying to change the settings in order to people with the face you to leave better from the beginning, when they wake up in the hospital. If they have their health professionals prepared to communicate better with them. We read it from other countries, and which really believe it. So, we are trying also to make some changes and I've started also last year. Doing some SCA work with the other students from other courses. In my university we have nursing students. We have physiotherapists. And we have radiology students. So, at the beginning of the of the year we are doing some online courses to prepare them before going to their practical settings and communicate with the people, with aphasia, or with other communication disorders. So, this is my experience. This is what we are trying to do.

Jerry Hoepner: Such important work I can't imagine. I've had so many kind thought leaders and researchers and clinicians that have guided me in this process, and that it wait so much of that groundwork out. So, I just can't imagine building that from the start. And what you're doing is so important.

Assunção Matos: This year we are planning to start group therapy with people with the face, you know, because I am at the moment I am 100% at university. So I left my hospital and I really miss my patients and I miss, you know, to do the to be an SLP in practice And because there are not many groups in the country, as Paulo was saying. So, we are trying to organize group therapy for people with aphasia, maybe to do also some work with their family members and the idea is to do the group therapy and trying to do some investigation at the same at the same time. Now it's better going to be the challenge for this year for me.

Paula Valente: I just want to say that at the beginning we were offering some workshops and training for the professional health professionals about aphasia, about how to communicate, and other topics that are important from for them to manage better the person with the aphasia since the beginning and we started to see that the health professionals. They don't have time to do training and they don't have money they don't have. They don't want to invest in this kind of training. They want training, but they want that accessible for them so it but the accessible means free without costs and preference in their setting. So, we have to go there to give them the training, because if they have to go some an another place, they don't go. So, where LPA was finding these things and was okay, what we can do. So, one of our works was to find funding programs to fund 2 projects that are, that the main objective is train, the health professionals to communicate. And so along these lines, we did a lot of free training in settings like hospitals and rehabilitation centers, and main mainly financed by those kind of funds.

Assunção Matos: Let me just highlight that we are not doing this training alone. So, we are involving people with aphasia in the training. So, we, me and Paulo, we explore the more theoretical parts and then we have people with the aphasia, with us who are the trainers in, you know, in in practice. And II also would like to highlight that this is something that we have tried from the beginning to involve people with the phase in their family members. our Vice President is a woman with the aphasia we have some family members that belong to the Board of EPA. And we from the beginning. The idea was, as Paula already said, work with them and for them and I think this is something that is really is really important. And it's very, you know, for us it's very good. It makes us feel very good about it.

Jerry Hoepner: Totally agree. And I mean, it is really impressive that the amount of work that we've been certainly important work. And I get the feeling that the 2 of you probably don't sleep a whole lot. You're certainly doing a lot. I don't know a lot of good things, and you're doing them the right way. So maybe I can shift gears one more time. To talk a little bit about the business end of things. cause that's a part of building from the ground up.  Would either, if you like to start talking about your model.

Paula Valente: Yes, since the beginning we wanted to be a social entrepreneurship project. So, what is that? We want to solve a social problem that the public services weren't solving. So, we have innovative responses, services, resources but we also have business model near underneath that because we wanted to. We thought, and I think I'm sorry about my English. I can't I my English day. II feel like I have a aphasia because it's like II know everything. I know what I can. I won't say, but I can say it. I don't speak English every day, so I'm sorry I'm not in the academic field, so I don't have many, many opportunities to train my name, my English, what I am saying our goal is to be sustainable and I personally believe and I think that the EPA boards are completely aligned with this is that the solutions that EPA offers to people with aphasia are not only our responsibility to sustain, to provide is something that is a responsibility from all is responsibility. Okay, I, Paul, sound the board. All this, the people involved that we have the responsibility to, because we started that. So, we have the responsibility to provide the organization, and guarantee that all is working. But in the end, the solution doesn't depend only on EPA, we need the community to achieve our goal. We need the people and their families to achieve our goal. So, everyone as responsibility in this this is, I don't have anyone with aphasia in my family. I could have aphasia someday but  is not only my responsibility to bring this to the community, or somebody that has aphasia is our responsibility, because in the end some of us really have aphasia. My family member, my neighbor, also is our responsibility. So, when we started this organization, the social organization. We want it to be sustainable. But we don't want it to be depending on funding on the States because many of our social organization in Portugal. They have the tradition of being funded by the States. They are. They have a lot of funding that comes from the States and that is a problem, because states they don't have many money to owe it. So, they don't do the better job because they don't have money sometimes. Sorry about my English. So, we thought, if you want to do better than the State, we don't,  If they have a responsibility. We want them to participate, but they don't have the only responsibility we have the wrong responsibility. But the piece, the person with the aphasia and their families that are beneficiating from our services. From these services. From this organization they also have to compensate. And as organization, we have to be aware that to be accessible to all okay, we have to be open to different kinds of participation. So, people with aphasia will compensate will pay for some services in different ways, in different measures and that was the difficulty we had to the term to at the beginning. We have to think about how to do that. So, at the moment, we have different recipes.

 

Jerry Hoepner: If we put maybe multiple different funders sounds like that are contributing. Is that what you mean?

Paula Valente: So, we go get money from different our services, clinical services, our programs group programs, okay and individual programs. So, people with aphasia pay for part of it. If go do fundraising to pay another part and our and our objective, our goal is the community, the municipalities and the state pay another part. So, we don't have to lose our sleep. Doing fundraising is very difficult in Portugal, I think, from what I learned from other centers, our reality is different in Portugal. We don't have many we don't have access to fundings and programs and investments. And the philanthropic minds is not something very easy in Portugal, very available. So, we do fundraising in Portugal and do fundraising to help people with the aphasia. What is aphasia? What is that? So that is very, very, very, very, very difficult. So, we need to involve people with aphasia. So, they pay for their services for our services. They pay for our therapies, but they don't pay for resources. They don't pay for information. They don't pay for workshops for some of if events that we do that are open and they are invited to come. But therapy with therapists that we have to pay. They have to pay also we have services. We sell courses some of online courses. We did. In our websites, you can see mainly in Portuguese. But we have online courses with very good programs, very good professionals, international colleagues that help us to do the courses. They are another source of income, not a big one, but they help. We did a translation of some communication books from Aphasia Institute, and then we sell them to give us also some in income. So, we have members of our association and pay a contribution. Yes, like every year they pay a contribution. So, we have, some associates that do pay an annual contribution. We do a lot of fundraising and we try to develop more services to, not to people with the aphasia, but professionals that give us income to sustain the organization. So, it's a hard work. But it's in the beginning, because we, it's difficult to involve the municipalities and the States. In these solutions we have to prove that they are better, or they have major impact in in the lives of the persons with the aphasia, but also in their pockets the state pocket, because we have to prove that our support, our kind of approaches make more difference and the people with the aphasia that stay in the State. The public services consume more resources during more time And they don't go. They don't achieve their goals in the end so we are now trying to show the Government our model of work may for the in the future they maybe support some incorporate some of these approaches in their public services. So, it's another way to support.

Jerry Hoepner: Yeah, that's it. I was going to say, yeah, that's a lot of work to do. I mean, you're providing all of the services you're providing a lot of the fundraising and providing a lot of education to students and professionals throughout the country at no charge in many cases. So certainly, this is a grassroots ground up kind of work. it has been a really fun conversation. And I think we did continue this conversation for hours. It sounds like, but unfortunately, we have to close it up at some point. I just want to see if there's any last thoughts that you want to share with our listeners.

Assunção Matos: I just want to say that it looks like it is a lot of work but I really believe in what I'm doing. I still dream Paula is doing one of my dreams, but I still dream that in the future, if I have aphasia, I will find one of my students doing the best job with me. This is my, this is my dream. That's why I believe so much in what I'm doing in And I'm always trying, you know, to move on into and to do different things and best things because I really don't want to face the difficulties people with the aphasia yet face in Portugal, because it's different to have aphasia in Portugal, or to have aphasia in Australia, for instance and I want to do my best job so I can enjoy it in the future.

 

Paula Valente: I just want to say it's really worth working on a live participation approach, because it really makes all the difference in the people. It's an adventure but it’s worth it. And I hope that this conversation inspired other colleagues to do the same, or to continue doing the same.

Jerry Hoepner: Absolutely. I think that's a great way to end. Thank you both so much. You've been just great to have this conversation with. Really enjoyed it, and I know that our listeners were will enjoy it like you said. I hope this inspires someone else to take on this kind of work. So, thank you so much.

 

Assunção Matos: Thank you, Jerry. It was a pleasure.

Paula Valente: It was a pleasure. Thank you for the opportunity.

Jerry Hoepner: You're welcome.

 

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

 

Resources:

Online courses with national and international lecturers: https://ipafasia.pt/formacao/

Mobile application for communication support and functional and social interactions:  https://ipafasia.pt/aplicacao-movel-da-afasia/

Info-graphic videos: https://ipafasia.pt/videos-informativos/