Aphasia Access Conversations

Ellen Bernstein-Ellis, Co-Director of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences is the host for today's episode with our guest Dr. Liz Hoover. We'll be discussing gaps in aphasia care identified by Dr. Nina Simmons Mackie in the 2017 White Paper and how Aphasia Access and we, as a community, can work together to address these challenges.

Dr. Liz Hoover is a Clinical Associate Professor at Sargent College of Health and Rehabilitation Sciences and the Clinical Director of the Aphasia Resource Center at Boston University. She holds board certification in adult neurogenic communication disorders from ANCDS. Her research and clinical focus is on group treatment for aphasia. She is a founding member of Aphasia Access and is serving as the 2019-2021 board president.

In today's episode you will:

• Find out how the Aphasia Access White Paper can be helpful to a student, clinician, researcher, or instructor.
• Learn about the gap areas in aphasia care identified in the White Paper and some current endeavors and future plans to address these needs.
• Gain understanding how these gap areas impact clinical services and how all stakeholders can address service gaps to improve the lives of those impacted by aphasia.
• Learn some exciting initiatives set by Aphasia Access for 2021.
• Listen to Dr. Hoover's perspective on the value of kindness as we support our clients and each other through these challenging times.

Today's show highlights 10 gap areas outlined in the Aphasia Access White Paper authored by Simmons-Mackie. (Complete citation at end of show notes.):

1. Insufficient awareness and knowledge of aphasia by health care providers and the wider public
2. Insufficient funding across the continuum of care
3. Insufficient availability of communication intervention for people with aphasia
4. Insufficient intensity of aphasia intervention across the continuum of care
5. Insufficient attention to life participation across the continuum of care
6. Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care
7. Insufficient or absent communication access for people with aphasia or other communication barriers
8. Insufficient attention to depression and low mood across the continuum of care
9. Lack of a holistic approach to community reintegration
10. Failure to address family/caregiver needs including information, support, counseling, and communication training

"While significant advancements have been made in knowledge of aphasia and evidence-based management practices, gaps in services for people living with aphasia remain significant. These gaps create substantial personal, financial and social costs to people with aphasia, the people who care about them and to the community at large. With appropriate and sufficient services, the goal of enhanced life quality for those living with aphasia is achievable. The time is now for all stakeholders to come together to address service gaps and lead the way to a better life with aphasia." Simmons-Mackie, Aphasia Access White Paper. (p.126)

Transcript edited for conciseness

Interviewer: Ellen Bernstein-Ellis

Liz, I am just delighted to have this conversation with you today. It's an honor to have this chance to interview you. Our book clubs have collaborated a few times. Our most recent book was Deborah Meyerson's book Identity Theft: Rediscovering Ourselves After Stroke.

But our connection goes much farther back than that because you're the author of a book chapter in The Manual of Cooperative Group Treatment for Aphasia, edited by Dr. Jan Avent, that you wrote after your participation as a clinician in the Aphasia Treatment Program (ATP) as a master's student, and that book is our Bible in terms of guiding an introduction to Cooperative Therapy, especially as I started at Cal State East Bay. So, your roots with group treatment start back in your graduate training under Dr. Avent's mentorship. I think we both want to give her a shout out today.

Liz Hoover

Yes, yes, absolutely.

Interviewer

I consider her a talented mentor and a friend. And I was wondering if that early clinical experience motivated you to pursue research and group treatment?

Liz Hoover

Absolutely. She is just an unsung hero, in our community. She was such a mentor, such a generous professor. She was so impactful in shaping ideas about participation-oriented treatment, about making an impact in living successfully with aphasia, back many years ago in the early 90s. Just her wealth of knowledge and wisdom and sharing with what we now know as those luminaries in LPA movement back then. I cut my teeth on group treatments, so to speak. Thanks to her leadership, I grew up in the community not really realizing that there was any other way. So, what a start to have had in the field, right?

Interviewer

Absolutely, she has been an inspiration for me in my career, that is for sure. I'm glad we have this opportunity to give her some acknowledgement.

Today, we get to talk a little bit broader about some areas of aphasia care that we both feel strongly about. But before we get there, I have a question for you. We, the podcast committee, have been talking a lot about adapting to a changing world, and thinking about how to set the agenda for this year. Right now, it's COVID that has been the catalyst for change in terms of service provision. Would you like to comment how COVID has prompted changes to your practice or your program?

Liz Hoover

I think we're like many others around the country. When the state of Massachusetts went into lockdown during March, that was actually the week of our spring break. We were told, as we went off to spring break, spend the week figuring out how to continue if we don't get to come back. And that's, of course, exactly what happened. We had a week to figure out if we could move our practice onto a HIPAA zoom platform. We needed to quickly, through Massachusetts licensing laws, get 10 hours of telehealth continuing-ed practice that week, so that we were in compliance. We launched, literally, that Monday with groups. We didn't miss the group experience in the semester for many of them.

There were some groups that needed adaptations. So, our aphasia community chorus group, was a challenge to do via HIPAA. So that shifted more to a music appreciation group with some soloist performances, and some choral, but the timing is really difficult over the zoom. So that was one that needed some adaptation. But it's been a really interesting journey to experiment with different flavors of our groups.

Another happy side effect of this or the COVID, a silver lining, as people are starting to call it, is that we've actually been able to welcome some new members due to the changes in the telepractice law. We've had people join us from Connecticut, New York City, Vermont, further north in New Hampshire. Our access has expanded quite considerably, thanks to the telehealth.

Interviewer

That's a really fast turnaround that you all managed. We had two weeks, so we had double that, and still found it challenging to get going. I can appreciate just how busy you've been. And I also appreciate you sharing your program. You've shared on the Aphasia Access Brag and Steal page some wonderful ideas, like your cooking class.

Liz Hoover

That was one with quite a lot of adaptation to do that in your own home.

Interviewer

But very fun though.

This episode, Liz, is going to focus on gaps in aphasia care. But first, can we start by just briefly giving some background on what the White Paper is and why Aphasia Access decided to take on this this weighty project?

Liz Hoover

The White Paper was authored by our founding Aphasia Access president, Dr. Simmons-Mackie. The need for the White Paper was actually conceived during one of the annual strategic planning meetings. One of the big challenges in grant writing and in-service advocacy is that the data on incidence and prevalence were scattered across the internet and papers, and it was really hard to aggregate the data together. And people cover all the data and statistics slightly differently. So, there's no core consensus on those key statistics. So, the board as a whole decided it would be a worthwhile investment to get this research done and done well. So that, as a community, we could advocate for services, and also hopefully identify areas of need using this one comprehensive source. A call for proposals went out and we were just thrilled that Nina agreed to take on the project.

Interviewer

Absolutely. I think it's a really valuable contribution. And I'm so grateful we get this chance to talk about it today. We'll focus on gaps in aphasia care, as well, but would you like to just describe the White Paper's main sections for listeners who may not be familiar with it?

Liz Hoover

It's actually a 125-page report that's divided into seven major sections. The first section introduces the report and reviews the rationale for the report. The other sections are an executive summary, a section on the frequency of aphasia, demographics of aphasia, it's impact into the larger community. And then the final two sections are on communication access, and then services and service gaps.

Interviewer

That's where we're going to focus today, but how can listeners gain access to the White Paper?

Liz Hoover

Alright, so the White paper is available on the Aphasia Access website, which is aphasia access.org The executive summary is actually free to members. So, if you're an Aphasia Access member, you can just download that as part of your membership. If you're not, there is a nominal $20 charge to download it. The full 125-page report comes in two versions, you can get it with or without a graphics package, and there's a slightly different price scale for those two. But a reason to get the full graphics package would be if you wanted to use the visuals in inservices or reports of your own. They're all easily downloadable. So, it's $100 without the graphics and $200 for the full report and graphics.

Interviewer

I can say it's been really valuable to me. I'm going to do an upcoming presentation at a local hospital, and I went right to the White Paper to pull some of that information. It really was so useful to have all the citations and the references and the information all in one central place. Can you elaborate a little more on how it can support the student and the clinician or researcher's efforts to pursue a project?

Liz Hoover

Absolutely. Prior to the White Paper's release, it was just really difficult to compile the statistics, or have the justifications for need. Having this all accessible in one place with current data gives us a broader, more accurate set of data than we've ever had available. Pulling these things together is time consuming. Whether you're a researcher or a clinician, or even just a student who's trying to justify a project or write a small grant of some sort, it's so useful to be able to take these data to advocate for services in an efficient and more easy manner. I know I use our copy in the center frequently for teaching. I've pulled something from this paper for most of my aphasia lectures across the semester. But I also use it frequently for foundation funding proposals, even government funding proposals and applications. For clinicians, if you need to do inservices to allied healthcare professionals, or if you are trying to get funding or justify even more resources for your department talking about the potential need that's out there in your community, whatever your need, I think the best statistic and the best content is within this paper somewhere.

Interviewer

I was really struck by how many powerful quotes are right in that paper that resonated with me and are really great ways to get the message out. So that's another value.

Liz Hoover

Thank you, Ellen. There are these tidbits and personal vignettes and stories throughout the paper that help you tell the story in in a meaningful way. So, it's not just data and statistics, it really justifies the need. Nina always, in a really comprehensive and participation-based way, humanizes the data for us, right?

Interviewer

Absolutely. And I think that's what spoke to us as a podcast committee when we decided to hone in on the 10 gap areas in aphasia care identified in the White Paper as our agenda for the podcast in 2021. We're excited about launching this episode in January so we can talk about where we want to head with our shows this year. Why did the gap areas of aphasia care become such an important part The White Paper?

Liz Hoover

I think if you asked Nina, she would actually say that if you just look at the White Paper, it can be a bit depressing, the true state of the care of aphasia. So, the gap areas, and, as she would say, their call to action, they're supposed to inspire us and get to feel optimistic about where we can make a change, where we can focus our efforts, and how we can make that biggest impact for those living with aphasia. So, there's that piece, and from an organizational perspective, knowing where those gaps exist allow us to think strategically about where we can focus our resources to have the biggest impact.

Interviewer

Absolutely. We will list those 10 gap areas in our show notes. And they're listed in the executive summary that's free for everybody. We'll talk about some of them, as we engage in this conversation today. Where do you want to start?

Liz Hoover

The first White Paper gap area is the insufficient awareness and knowledge of aphasia by healthcare providers and the wider public. I'm not sure how many of our audience have had a chance to read the follow up paper to this. But there's

a paper published in April of 2020, in Aphasiology called Beyond the Statistics: A Research Agenda for Aphasia Care. This paper highlights that the many of the subsequent gap areas that Nina identified in the paper stem from this lack of awareness. The general public doesn't have sufficient awareness of aphasia, and all of the recent surveys show that people may have heard of the word, they may have a vague understanding, but it's a low bar of knowledge of the word, right?

If the general public and those distributing funds don't really have that good awareness, then we don't have sufficient funding across the continuum of care, which is gap number two. If we don't have sufficient funding, then there's insufficient availability of the intervention, right? So, there's this trickle down between awareness, funding, availability of services, the availability of intensive services, across the care continuum.

(It may impact) things like insufficient training for participation-oriented intervention. Nina cited in the White Paper, a study by Katarina Haley that basically revealed that of the 1000 plus treatment goals in the larger goal bank study, less than 5% focused on participation. We have insufficient amounts of care and we're not focusing the intervention at the right area of participation.

And then Nina also highlighted that, as a community, there's insufficient attention to comorbidities such as depression and low mood, which again prompt all sorts of adverse health care consequences. A lack of a holistic approach to community reintegration because we're not thinking about those comorbidities that might be going on.

And then finally, the 10th gap listed is the failure to address family and caregiver needs. So that LPA tenant of needing to provide adequate care to all of those who are affected by aphasia and the continuum of care.

Interviewer

These are all important to all of us who provide services to people with aphasia. And they are part of why I'm an Aphasia Access member. How have these gaps guided Aphasia Access efforts and focus as an organization?

Liz Hoover

We come back to these areas of need whenever we're trying to think about our projects and our programming throughout the year. So, the board meets in December to look at and approve the budget for the subsequent year. We are a lean organization; I'm just going to say that up front. But what little funds we may have to guide programming, they are all driven back to which of these gap areas does this project support or address. We have a development committee who's always actively looking for funds to support a project. This framework and these gap areas are used every time a project is being discussed or we're applying for funding.

Interviewer

I want to drill down even a little more. I'm going to ask you to share some specific examples of how Aphasia Access is addressing these gap areas through its initiatives and programming.

Liz Hoover

I will try. I will add a caveat up front and say that I'd like to apologize if I forgotten anything because 2020 was a busy year. We had our June Aphasia Awareness campaign with weekly initiatives. But the biggest one, of course, was the 24 hours Teach-in where we had 24 hours of continuous programming for a day in June, recruiting people from international areas to just share and spread the wealth. That was a particularly powerful event. The history of the Teach-in is that we're trying to protect something. And if you ask Barbara Shadden about this, who was one of the key members of this program committee, that was the point. We were trying to increase awareness of aphasia with that showy, flashy spread of resources and information.

Interviewer

I've never ever been part of something that went 24 hours in aphasia before. So that was phenomenal to me. But you've really amplified its power and impact because Aphasia Access has posted more than 50 of those presentations. I pulled from them for one of my projects, just this last semester, when I wanted to look more carefully at communication partner training. There were a number of wonderful presentations that I could listen and watch. So just having that "live on" is another wonderful accomplishment for the organization.

Liz Hoover

It just speaks to the willingness of the community to share and to step up. The 24 hours event, absolutely, was the first. There were some of us who thought, gosh, this is madness, absolute madness. But as you said, the library that has come from people graciously sharing their ideas is tremendous. And I think that fueled lots of other virtual webinars, conversations, panels, and programming with the Resource Exchange moving to a monthly Brag and Steal format, where we invite members from practice to just share those great ideas. The Brag and Steal has always been a really powerful part of our Aphasia Access Leadership Summit. We're working on an E-learning project, which is designed to meet the gap in the insufficient training on participation. I can't share too much at the moment, but I've seen the training modules and they're just terrific sets of courses, mini courses, if you will, on how to get certification in these LPA tenets and training participation-based care. We hope very much that that's going to be available in the first half of 2021.

Interviewer

But is that separate from the academic modules that you've already created?

Liz Hoover

Nobody else has seen it yet. It's a sort of a self-learning module where there's tests throughout, but it will allow folks who take this to earn a badge in this participation-based care. So that, again, designed to meet that gap area.

We've got some grants and proposals in the works to try and bring that training to earlier levels of health care, the acute care environment. We've also launched the distinguished speaker series and there's been several already this year where we've featured experts internationally who have shared their knowledge in a webinar format.

We've also had a couple of special events like the LPA anniversary celebrations, including the ASHA breakfast where we had Dr. Audrey Holland and Dr. Roberta Elman speak about their new book. And then we had the founding authors of the LPA projects, that wonderful panel in fall, as well.

So, I think there's been lots of specific virtual programming events that have happened already that are trying to share information and training, practice, and overall awareness, as well. And one of the other things I'd just like to mention is while there have been a lot of experts and luminaries in our field, a lot of this programming, too, has been crowd-sourced from our membership. It's not just those who publish the papers who've been involved in this collective community effort, which I think is special about this organization.

Interviewer

I agree. I have found it, personally, to be an incredibly inclusive and welcoming community. And that has been really valuable to me. You highlighted some things that Aphasia Access has done already; you gave us a hint of something coming up. And that's part of my next question.

Are there other upcoming projects or new endeavors that we're going to see in 2021 furthering this work and hopefully motivating people to renew or begin a membership? That's a little shameless plug, but sorry, go ahead. What on the horizon?

Liz Hoover

Our distinguished speaker series will continue. We have Dr. Miranda Rose from La Trobe University. We have the incomparable Dr. Leora Cherney who will be speaking and Katarina Haley, and Barbara Shannon. And then we close out 2021 with a talk by Dr. Linda Worrall, who needs no further introduction.

Interviewer

Fantastic lineup.

Liz Hoover

We're excited about those talks. Nidhi Mahendra, who you know well and is now at Cal State, San Jose, will be leading our task force on diversity and inclusivity. So, we will be hearing more programming from that task force. There will be the continued Brag and Steal sessions that come through the Resource Exchange.

But I think our biggest piece of programming that will happen in 2021 is the every other year Aphasia Access Leadership Summit. This will take place in the first week of April. We will be virtual this year because as we were planning, the risk of it being able to happen in person felt too difficult to predict and the risk of the costs falling outside of expectations was problematic. So, we will be virtual. The theme of this Leadership Summit is "Uniting for Action, Learning From One Another". There will be a really exciting week worth of events.

The way the programming will work is that there'll be synchronous and asynchronous learning that takes place across the first four days. There will be a talk that happens lunchtime hour central time. So, it's sort of a breakfast hour for those on the west coast. Then the main bulk of the programming will take place on Friday and half day on Saturday. Monday, Tuesday, Wednesday, Thursday, there's a one hour talk that will be available for you synchronously or asynchronously if you can't make that particular hour. Then it continues 9:00 to 5:00 on Friday and 9:00 to 12:30 on Saturday.

A press releases will come out shortly. But basically, there's content on healthcare disparities for people with aphasia, work on telepractice, and innovative programming using technology. There'll be a two-part panel conversation on unpacking aphasia groups. So, I'm really looking forward to that one. There'll be lots of crowdsource talks from the call for papers. But again, in the spirit of all that we do at Aphasia Access, it's about learning from each other and that sense of community. I hope folks will find the content to be really valuable to their daily practice.

Interviewer

Liz, in an earlier podcast that we did with Megan Sutton, she shared that going to her first Aphasia Access Leadership Summit was career changing for her-- it was that impactful. And I feel the same way. I joke sometimes that it's better than a B-12 shot because it just energizes you through the exchanges, the sharing among the wonderful, wonderful, committed people who are there talking about their experiences and their work. It's just a phenomenal experience. So, I recommend it. Even though it will be a virtual platform, it sounds like a lot of thought is going into how to make those connections still be really valuable.

Liz Hoover

While I don't know exactly the specifics, I'm assured there will be time for conversation and mingling in rooms because some of those great ideas come from chatting in line with somebody during these conferences. I'm optimistic that, despite joining from our own environments, we'll still have that same opportunity for sharing and conversation.

Interviewer

A little earlier too, you talked about the need for optimism. I think we'll get that from the conference, for sure. But going back to these gap areas, is there a particular topic where you feel most hopeful or excited in terms of making progress?

Liz Hoover

I do. I think that I share the optimism of many of our members and certainly some of the speakers that we've heard from this past fall, that what once was a subversive or revolutionary movement is now really just part of the conversation that is focused on participation. This client-centered care is mainstream and shared. But you know, it's always been part of my mainstream, but I think I'm less of an outlier these days than certainly 25 years ago.

Interviewer

Absolutely. Yet, I know, there's still challenges. You've alluded to those as well. Are there gap areas that you feel are more challenging to address or getting less attention than the others that you'd like to highlight?

Liz Hoover

I'm an optimistic person at heart. And I'm encouraged by all the work that has been done and is currently being done by people to move the needle for aphasia awareness, but the reality is that there's still a long way to go. The needle hasn't moved much in 16 years in terms of the public worldwide being aware of and truly having a working knowledge of aphasia. I think that that's a gap area that needs to be a continued international focus area of attention, because that will feed the other gap areas, as we've already talked about. So, I think that needs to be our priority. I know there is a sub-committee, an international group of researchers who are planning an agenda for this area, but we will need to keep that need front and center in our our practice.

Interviewer

That leads me to my next question. What can we pose to our listeners today in terms of how to respond to these gap areas in their own practice? Our listeners are across a large variety of settings, but what's the message we should get out?

Liz Hoover

I've been thinking quite a bit about that over the past few days. And I think it's easy for us to get discouraged, right? Or to not think that we can make much of an impact or to ask, "who am I to make an impact", but I think we can, individually and collectively. I was struck, as I often am, by something Maura English Silverman said to me very recently. We were on a call about something and she was reflecting on having listened to some of the LPA speakers this past fall. These were special conversations. If you haven't had a chance to listen to them, they're up on the website, I encourage our listeners to do so. Because there were some really candid humanizing stories that were shared by these giants in our fields, right? And they talked about how the ideas in LPAA were born out of these really common clinical frustrations. And I say common, because I know, I've experienced versions of those similar kinds of frustrations.

And so, Maura reminded me that we have those frustrations, and we have those ideas, too. Maybe our ideas or your ideas could be impactful and powerful on that same level, if you would share and collaborate and get engaged to help bring about some solutions. Remembering that Aphasia Access is a community of equal ideas, and we value each and every experience and idea, and if you've got something to share, and you've got some energy and time, then getting involved and helping us move that needle in any of these gap areas would be tremendous.

Interviewer

I was going to ask you to do a pitch for membership, but I think you just did it, but still, who is aphasia access open to?

Liz Hoover

Absolutely, absolutely everybody. If you're interested in helping to change the lives of people living with aphasia, then we are a place for you to come and make an impact. There will be some exciting membership changes for students, especially in the coming year. So, I think with the resources, the community, the mentorship that's available, it's well worth getting involved.

Interviewer

We're also looking towards expanding our interprofessional interaction. I'm very excited about that as well within the organization.

So, a place for everybody. I like that, Liz. I want to thank you for having this conversation today. And I want to acknowledge how inspired I've been by your work within this organization, and course, you as a director of a very dynamic Aphasia Resource Center. I want to thank you for that work, which has been inspiring to me in my career, as well. Is there anything else you want to say to wrap up today, Liz? It's just been such a pleasure.

Liz Hoover

Thank you, Ellen, you're always way too kind. I think if I could, I'd just like to close with one other thought. You know, gosh, this has been a year, right, unlike any other. I learned a new word from the paper the other day, it was called "doom scrolling", which is what it feels like when you read the paper and it's just doom and gloom as you scroll down the page.

As I was thinking about your questions on impact, I think we as a community, we as people, are kinder than we might remember at the moment, right? And that the good deeds that we do as part of our practice will be paid forward. I have been so inspired by some of my members this semester, on their work, their energy, their attempt to comfort and support each other, and their initiative in figuring out how they can make a difference in their own communities. Like in the shared book club that we have done this semester, there's one woman who's inspired to do an in-service at her local Rhode Island hospital on the need for communication access. She's going to write a blog in case her story can help others. This is somebody who didn't tell people outside of her immediate family that she had aphasia because of the stigma that she felt early on.

Those stories multiply, right? That starts with you doing the best job you can and embracing people in this community and helping to empower. So maybe making an international impact is hard, but that's not the goal that we need to have immediately. It's about remembering that each person on whom we have a positive impact will spread. And kindnesses will travel forward, and we hope that is the impact that is sustainable for us.

Interviewer

That is a beautiful way to close this interview. Liz, I thank you for that perspective. And I am so grateful we've had this conversation today.

References and Resources:

Avent, J., Patterson, J., Lu, A., & Small, K. (2009). Reciprocal scaffolding treatment: A person with aphasia as clinical teacher. Aphasiology, 23(1), 110-119.

Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3-5), 365-375.

Avent, J., & Austermann, S. (2003). Reciprocal scaffolding: A context for communication treatment in aphasia. Aphasiology, 17(4), 397-404.

Avent, J. R. (1997). Manual of Cooperative Group Treatment for Aphasia. Butterworth-Heinemann Medical.

Haley KL & Cunningham K. (2019, March). The aphasia goal pool project: Updates and observations. Poster presented at: Aphasia Access Leadership Summit, Baltimore, MD.

Simmons-Mackie, N., Worrall, L., Shiggins, C., Isaksen, J., McMenamin, R., Rose, T., ... & Wallace, S. J. (2020). Beyond the statistics: a research agenda in aphasia awareness. Aphasiology, 34(4), 458-471.

Simmons-Mackie, N., & Cherney, L. R. (2018). Aphasia in North America: highlights of a white paper. Archives of Physical Medicine and Rehabilitation, 99(10), e117.

Simmons-Mackie, N. (2018). The state of aphasia in North America: A white paper. Moorestown, NJ: Aphasia Access.

Show Notes - Episode 61

Something Sweet... LPA One Cupcake at a Time: A Conversation with Rick Lemoncello

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today's guest, Dr. Rik Lemoncello. We are fortunate to have a conversation about his work on supporting adults with acquired brain injuries in the Sarah Bellum's Bakery & Workshop.

Rik Lemoncello, PhD, CCC/SLP (he/him/his) is an Associate Professor in the School of Communication Sciences and Disorders at Pacific University, Oregon. His work focuses on developing creative solutions to support adults with acquired brain injuries, interprofessional education, and the scholarship of teaching and learning. He founded and directs a non-profit program, Sarah Bellum's Bakery & Workshop, in Portland, Oregon. He serves on the ANCDS TBI Writing Committee, and speaks regularly at local and national conferences.

Take aways:

• Start small, think big
• This organization's mantra is 'serendipity,' as it is a project that "just wants to happen."
• • Serendipity led to much of the initial upbringing of the project and continues to inspire its producers and participants to grow the organization further.
• Sarah Bellum's Bakery uses the OT framework of Doing, Being, Belonging, and Becoming.
• • By doing a task (baking in this case) and getting better, the bakers have this sense of being, and that turns into this sense of belonging, and then the sense of becoming and reformulating their identity.
• The participants are not called individuals with brain injuries or clients or certainly not patients! They are referred to as bakers and salespeople as a way to assist them in creating an identity for themselves other than their brain injury.
• In order to see results, consistently modeling desired behaviors for the participants and the students is an essential part of leading this type of apprenticeship program.
• Interprofessional collaborations with Occupational Therapy and Vocational Rehabilitation are crucial to leading individuals with brain injuries into supportive, paid employment opportunities

Interview transcript:

Jerry: Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin - Eau Claire. I'm privileged to introduce today's guest, Dr. Rik Lemoncello. We are so fortunate to have a conversation with him today about his work in supporting adults with acquired brain injuries in the Sarah Bellum's Bakery and Workshop. Dr. Lemoncello is an associate professor in the School of Communication Sciences and Disorders at Pacific University in Oregon. His work focuses on developing creative solutions to support adults with Acquired Brain Injuries, interprofessional education, and the Scholarship of Teaching and Learning. He founded and directs a nonprofit program, Sarah Bellum's Bakery and Workshop in Portland, Oregon. And he serves on the ANCDS TBI writing committee and speaks regularly at local and national conferences.

Jerry: Well, good to see you today, Rik, how are you doing?

Rik: I'm doing okay, hanging on, you know, COVID-19. It's a day by day week by week process. But...

Jerry: Absolutely. This has been an interesting several months. So, we've all learned a lot.

Rik: Yes. Thanks for having me here. Jerry. I'm glad we could finally make this connection.

Jerry: Likewise, I'm really excited to have this conversation. So, I'm really excited to have a conversation about Sarah Bellum's and the work that you guys do. Before we dive into that really cool conversation. Just as kind of a tradition in my talks, my podcast, I should say. Can you talk a little bit about your mentors and influences?

Rik: Absolutely. I think generally, McKay Sohlberg, who's at the University of Oregon is one of my primary influences. And before I knew her, I was a clinician working at rehab hospitals in the Boston, Massachusetts area. After completing my Master's in Boston at Emerson College, and I hadn't had a lot of background in cognitive rehabilitation. So, after working on the TBI unit in the hospital, one summer, as we do in Boston, we either tend to go up to Maine or down to Cape Cod for the summer, and I tended to be a person who went up to Maine. So, one summer I grabbed McKay Sohlberg and Katie Mateer's textbook on cognitive rehabilitation, brought it with me to the beach, and read it pretty much cover to cover in a week with so many aha moments. And then after reading that and being awoken to the wonderful world of cognitive rehab, I had the chance to see McKay do a live conference in Boston about the next year and I decided then in there that she was someone I wanted to continue to pursue my PhD with. And the rest of that was history. I moved out to University of Oregon to pursue my doctorate. The other person that I met along the way is Lynn Fox, who's now retired. She worked at Portland State University for many years after her work at the Portland VA. And Lynn Fox really is my inspiration for this work at Sarah Bellum's bakery. In my first year at Portland State University, Lynn Fox was running the then called Aphasia Stroke Camp Northwest and invited me to come to camp one weekend and I said, Lynn, I would love to do that, but I don't camp, and I really don't want to sleep overnight in a tent or a cabin. So how about I just come for a day, and she agreed. And it was very eye opening, and wonderful to see speech language pathology and occupational therapy and psychology students all working together in this interprofessional context before interprofessional was even the term we were using. And the focus was not on their impairments or their aphasia. The focus was on camping and having fun. And I said, Lynn, this is an amazing program that you've built. Your population your focus is adults with aphasia and camping is something that you do well, what can I do? I love the acquired brain injury, cognitive rehab population, and I love baking. So, there in 2008, was born and hatched this little idea to one day create a bakery program that would support adults with brain injury. So, to answer your question, I would say McKay Sohlberg and Lynn Fox were two, are two of the people who have really influenced me.

Jerry: Well, those are two pretty terrific people to influence and to grow and learn from. I want to say I think it's pretty funny that you brought along a textbook on cognitive rehabilitation to read on the beach. I admire that kind of thinking very much. That's terrific.

Rik: That is the geek that I am.

Jerry: I'm right there with you. So, I went on a cruise with my wife and in my, in my backpack there was a similar book one time and she's like, really? That's what you're bringing along on a cruise. That's, that's really great. Yeah. So, nerds rule.

Rik: Exactly. Two years ago, I read a brain injury survivors personal account story while I was on a cruise, so there you go.

Jerry: Nice. Perfect. That's terrific. Yeah, and I got to say Lynn Fox's work obviously inspired the camp that we run in Wisconsin as well. So, I'm very inspired by her work and what just what a brilliant individual she is. So, what a terrific lead in to you talking a little bit about Sarah Bellum's. You talked broadly from an inspiration standpoint about what led to the idea of Sarah Bellum's. Can you talk a little bit more specifically about that and how that all kind of started to formulate?

Rik: Absolutely. So literally, it's been on the back burner, plenty of food references along the way, since 2008, as I said, when I met Lynn Fox and went up to camp, and that's where this idea really hatched that one day, I was going to marry my two passions of brain injury rehab and baking. So coincidentally, I've always been a baker and I really started baking cakes when I was in graduate school. So I've been an SLP for about as long as I've been cake baking. So, these two really do go hand in hand for me. And so that idea hatched in 2008. It's been percolating for many years, and I've been trying to find potential funding sources. It's not a traditional research project or research grant wasn't really the avenue I was going to pursue. I've been sort of poking around looking at different foundation grants along the way when I've had the time. And then this wonderful opportunity presented itself to me. And one of the themes for me and for Sarah Bellum's Bakery and Workshop is serendipity. And as our bakers and participants like to say, this project just wants to happen. So, serendipity has led a lot of the initial work and continues to inspire us. The serendipitous thing was in 2016, I was named the Tommy Thompson, distinguished professor of education in the College of Education at Pacific University. And this wonderful honor came with a stipend, an endowment to essentially develop any scholarly program that I would like with the approval of the dean to advance my scholarship and continue to promote to the College of Education. So, I had some funding, I had the opportunity to pursue any scholarly project. So, I graciously accepted this award, of course. And I had some ensuing meetings with the dean, and I pitched several different ideas around Scholarship of Teaching and Learning, around assistive technologies, and around this idea of developing a bakery program. And the one that I really wanted to pursue, of course, was the bakery program. And so, lo and behold, the dean bit, there's our other food analogy. And said, that sounds like a fantastic idea. So, there was the hatching of this idea, and the rest has sort of been history. What do you want to know next?

Jerry: Wow, that's terrific. It truly sounds like it was destined to happen for sure. As long as we're talking about kind of how this got started from kind of a startup standpoint, from a philosophy, your idea what we wanted to accomplish standpoint, maybe we'll move into that, talk about some of the specifics of the program. Like, you know, what your theory and kind of grounding principles were, those sorts of things, and then we'll kind of work into, you know, some more details.

Rik: Absolutely. So cognitive rehabilitation, and systematic instruction, and supported environments, life participation approaches, all of these are sort of my foundation with a heavy foundation and systematic instruction, and participation approaches for something that's functional, relevant and meaningful. We can come back and talk about how I came to these aha moments later if you'd like. So systematic instruction, brain injury cognitive rehabilitation, and cake baking. How could we actually marry these two? How could I actually develop a program that takes something very specific, very precise for baking and developing cupcakes without being an occupational therapist ,without being a physical therapist, without being a psychologist, without being a social worker, you know, and from my background as a speech language pathologist in cognitive rehab, and develop a supportive environment, maximizing external supports? Going through the task analysis of what does it actually entail, to go through baking from start to finish, from setup all the way through packaging and cleanup? How are we going to think about pacing for supporting our folks with brain injury? How am I going to think about the language that goes into formulating the recipe? How am I going to go about teaching concepts and specific skills that aren't necessarily going to be a part of the recipe? How am I going to help folks learn to navigate in a small professional bakery space, visual spatially, as well as the social communication aspects that go into building a team and collaborating in a functional communication workplace setting? So again, this foundation and systematic instruction, really thinking about task analysis, how do we break down? How do we analyze all of these components' skills? How can we then maximize routine and external supports to provide the cognitive orthotics, the cognitive supports, the cognitive crutches to help our clients succeed? And how can we ensure success and use that success that behavioral momentum Mark Ylvisaker's work, to continue to develop and motivate clients to want to continue to move forward? So, to answer your question, I think the influences and theoretical approaches their systematic instruction, life participation models to, again not focus on the impairment. But think about what is the actual activity that we want folks to succeed at? How can we build in the routines, the external supports to make that happen? How can we make it motivating, interesting and fun and collaborative. And I started small. So, anyone wanting to do something like this, I'd be happy to talk about that process too. And starting small, we did just a pilot project the first summer for six weeks. We baked one day a week, we went to a local farmers market one day a week, for six weeks, just with four folks with brain injury and four graduate students working with them one on one and learned so much from that initial pilot program. That gave us then a year to pause, and reevaluate, and reconvene and develop better strategies, better tools for when we started again the next summer with round two.

Jerry: Wow, that's terrific. I mean, that's a really complex, but really well thought out framework to underpin all of the work that you do, I mix, really excited to kind of hear about that aha moment. I appreciate that you weaved Mark Ylvisaker's work in there in terms of the authenticity and contextualized work that you do. And just to highlight that point for our listeners of starting small, and you know, evaluating and continuing to learn from those experiences so that you can continue to grow as you have. Well, we hit me with it. We hit me with the aha moment. I got to hear it.

Rik: Thank you, Jerry. And unfortunately, I've already forgotten what I said. So, give me a quick reminder, and then we can rerecord that little segment.

Jerry: Oh, that's, yeah, absolutely. You said…

Rik: I had several aha's,

Jerry: I'll hit you with the aha moment about when I learned about this kind of philosophy of a systematic instruction, and yeah.

Rik: And, life participation, let's go with life participation. Yeah, ask me that again.

Jerry: So, as I said, hit me with it. Like what is that aha moment that brought all of these ideas' life participation, systematic instruction, meaningful interventions together?

Rik: Yeah. In addition to my work with Lynn Fox, my first year on faculty at Portland State University, a big shift in my own professional development. All of my clinical career has been in acute care and inpatient rehabilitation. So really, those early weeks after a significant brain injury. I dabbled a little bit in skilled nursing and an outpatient care, but really, my focus had been on acute care and inpatient rehab. Throughout my doctoral program as well, and when I came to Portland and started working at Portland State University in 2008, I really got involved with the support group community. And getting to meet and interact with people who are 10, 15, 20, 40 years post brain injury, gave me a whole different perspective that I never had that I never could appreciate when I was working in the acute care hospital and inpatient rehab, when patients had not yet been home to experience their injury, when everything was still brand new, and though we're still in a major period of course, adjustment to living with a brain injury. So, getting involved with the support group community and this population of folks with chronic challenges, and yet still finding joy and meaning and purpose in their lives, while also talking about the actual functional day to day struggles, and lack of resources. So, for me, in addition to what I knew, theoretically, it was really getting involved with working with people with chronic challenges that gave me the opportunity to pause and reflect and say, "Hey, wait a minute." Now that I understand better your perspective, your lived experience, how can I better support you as a speech language pathologist and clinician throughout this entire continuum?

Jerry: Wow, that's a terrific story. I gotta say, I've had some parallels to your progression in my career. I started out working in acute care and acute rehab, from the get-go as well. And like you said, working with support groups is what really changed my way of thinking about things too. I can remember reading Mark Ylvisaker's words about the patient as the expert and thinking I got it until I got it. That was a little deeper, a little broader than I had first given it credit for. So absolutely, that's where the rubber meets the road and those long-term chronic needs. And, and you phrase that so well. I'm excited to dig into this a little bit more. Can we talk a little bit about kind of the logistics of running the Sarah Bellum's bakery, everything, from staffing to supplies, and volunteers, and physical location, all of those things you kind of alluded to earlier?

Rik: It ain't easy. Start small. I've learned so much along the way. Because of course, first and foremost, I am a speech language pathologist, and I am a professor. And that is my primary identity. And that's what I know and love. And where I perform the best. It's where I have the most self efficacy for myself. I am not a professional chef, I have never worked in a professional kitchen. I am also not a businessperson. I've never started a business before. This is a nonprofit company. I've been involved with many nonprofits along the way, in various roles. So, setting up and leading a nonprofit program, we started as a small program before we broke off and became our own independent nonprofit organization in 2018. That work and the legalities around nonprofit work I had had experience with and that was not a steep learning curve. But actually, figuring out how to work and navigate in a professional commercial kitchen, how to get a bakery license, how to follow all of the proper food handling procedures and food safety hygiene and how do I supervise and make sure that all of the graduate students and helpers and bakers with brain injury are constantly following all of the proper hygiene and food safety. It requires a lot of vigilance on my part, to be consciously, continuously aware of everything that's happening. So, there are many logistics I've learned along the way, most of it through experience, which means trial and error. Most of it with trial and success, luckily, and that's my systematic construction background coming through again. I try to task analyze and think of all the things that could possibly go wrong before we walk into a setting so that I can be present to support my other crew. So again, starting small as we ramped up, I learned so much. We worked in three different commercial professional kitchens along the way, just rental spaces called commissary kitchens. And these are set up for pretty much startups to come in when people don't have the need for a full kitchen space yet, and you can rent space, and use all of this shared equipment and follow all of the processes. One of the things I knew going into that was that that would be distracting for our population. And by the way, most of the folks that I'm working with are presenting with mild to moderate cognitive communication symptoms, even though 95% of them have had severe acquired brain injuries. So even with mild to moderate symptoms and thinking about return to work as a purposeful, meaningful life activity, I knew that working with a broad population would have successes and challenges that come with it one of those being distraction. So, learning to live with all of the varieties of music that are played at various volumes in professional kitchens, navigating through space with other professional chefs that don't necessarily have background from a therapeutic standpoint supporting folks with brain injury. So, I did a lot of upfront training with our helpers. As we started off, these were graduate students in the SLP program at Pacific University. This was one of their practicum experiences. So being sure that I took the time to train the students up front so that they knew what they were going to do and how they were going to support the baker's all the way through to being continuously vigilant again, and constantly monitoring everybody. That was one of the logistics I had to learn along the way. And it is exhausting. At the end of the day, in addition to all of the physical labor, I am a professor. I spend most of my time sitting in my wonderful office chair, or sitting in meetings. That's the life of a professor. So just being physically active again, in a kitchen constantly picking up and moving heavy items, our mixers that weigh 40 pounds, bags of flour that weigh 50 pounds, and being on my feet moving around doing dishes, I love doing dishes. So that's one of the things that I like to do in the kitchen to keep things moving along. Where was I going with this tangent? Logistically things that I've been learning. Yes, it's a physically challenging job to work in the kitchen as well. So, I had to learn all about nonprofit management, I had to learn how to set up food handlers' cards and acquire our bakery license and make sure that I am ensuring that we're following food safety precautions. I had to figure out how to set us up at farmers markets. Farmers markets are wonderful community resources, but they're also really logistically challenging to set up and take down every week. And to have all of the appropriate equipment to be able to efficiently move in and move out of a space because you're not the only vendor, they've got 50 to hundreds, depending on the size of the market, 50 to 100 different vendors trying to come in and set up all at the same time and 40 minutes before the market opens. So, there were many logistical challenges there. In addition to all of the logistical challenges of figuring out the actual baking process, how to make a logical flow to a day and work in breaks, and also figure out what the easier tasks were and what the challenging tasks were and how to modify those. So, one example is we do all of the prep work ahead of time before our folks with brain injury come into the kitchen. So those are some of the less safe things like chopping, any knife skills we are doing ahead of time, for safety and liability. Also, some of the more challenging fine motor, visual spatial tasks, like putting the cupcake papers into the pan. Those sticky little cupcake papers are really hard to separate. And when we got started, it would take our crew about 30 to 40 minutes just to put the papers into the pans. So that was not an efficient use of our time. And then they were wiped out and drained. So just figuring out along the way, where and how to best prioritize different tasks. Does that answer some of those questions about logistical?

Jerry: Yeah, absolutely. I was thinking it's kind of ironic that you're helping people with executive dysfunction and need the best executive functions ever just to pull all those details off. Wow.

Rik: Absolutely. Yeah, I like to say and remind the students who are there learning about all of this that I am the executive functions and the person in charge is the executive functions of that kitchen and you have to prioritize, you have to manage, you have to delegate, you have to make decisions. You have to have the big picture and the details. Be vigilant, yeah.

Jerry: Now that is so well said when you said, "I am the executive functions, and those students are the executive functions." Makes me think about Mark Ylvisaker's framework on apprenticeship and self-regulation and how you must model that self-regulation all day long to not only to people with TBI, but your students. That might be the perfect segue into talking about students' roles and kind of your role and training them all of those things.

Rik: Yeah, I wear many different hats in my involvement at Sarah Bellum's Bakery and Workshop and one of those hats is as the program director, and that is my volunteer work handling logistics and making sure the bakery is up and running. One of the other hats that I wear through my professor hat is graduate student education and training. So, this has become a clinical practicum site at Sarah Bellum's Bakery and Workshop for students to come gain experience, for many of them their first time working with an adult with an acquired brain injury, and getting to see this wonderful range of symptoms, everything from sensory processing challenges, auditory processing, challenges, hearing loss, through the motor difficulties, balance, ataxia, spasticity, hemiparesis, as well as dysarthrias. And all of the cognitive communication challenges that come along with that, and we can really see I've enjoyed working with students in this context, we approach it very differently from a traditional setting, where in a traditional setting, you might start with formal assessment, and then move into treatment and get to some more functional things. So, we do it exactly backwards. We start with very functional activities, and students come in on their first day and just observe, how is their assigned client, their baker doing with the task of baking, and how are they doing at breaktime with social interactions, and they just observe for the first one to two sessions, and take it in and try to put some vocabulary and match up the knowledge they have with their actual skills that they're observing. And then they work and develop a treatment plan to support that person and make some goals about how they can help to scaffold and then fade the supports, over the course of a semester to help a person reach some part of their baking goal, to become more fluent, to become more independent, to master some of the recipe techniques, through repetition and practice and a lot of scaffolded support. And then at the end, we do this for the benefit of students gaining the experience, not because the bakers need to do this every semester, at the end, the students do a formal cognitive assessment. So, they've had all of this experience already. And then they do the standardized testing. And they say, "ah, yeah," what surprised you?, what didn't surprise you?, in terms of what might actually come out on a standardized assessment. And that's been for me a wonderful paradigm shift in thinking about student training and student education to really hone those observational skills right up front and challenge what we can and can't learn from standardized norm referenced tests. So that's one role that I've had with our SLP graduate students. Again, as a practicum site assessment, treatment, goal setting, goal planning all the way through a semester, I've also had the opportunity to have occupational therapy students come work with us and to inter weave interprofessional practice. So, we usually do a weekly meeting with our OT and SLP students together. When we're there on the same day, we're asking for an OT consult or an SLP consult so they can see the different lenses. We're all working on cognitive rehabilitation and cognitive supports, but how does an OT lens differ from that functional cognitive perspective and sensory visual processing? With the SLP lens of cognitive communication? And where do they meet? And why might we want to refer to one or the other throughout that plan of care? That's my professor hat.

Jerry: That's a pretty terrific description there. I just think about what an awesome contextualized experience those students are having. And I love the way that you framed or describe that framework of students doing the observation and working alongside of these individuals, and then doing the assessment, that standardized assessment later. And just that opportunity to see, you know, like you said, what makes sense here? What am I a little bit surprised by what are those limitations and abilities of those standardized tests? What a great way to really truly understand that because we can talk about it, but to see it as something completely different,

Rik: Especially in that functional milder, higher level executive dysfunction context because they will ace the standardized norm referenced tests.

Jerry: Well said, absolutely. But in a real-life context with all of the demands of the environment and the emotions and all of the people around them. Things are very different. So absolutely. What a great way to see firsthand. Terrific. You said something that made me want to go off on a tangent. I don't know if that's because we're talking about TBI, but you talked about the people that you work with the people in the bakery restaurant business, the shops and things like that. At aphasia camp, we talk about the ripple effect that that has on, you know, the people that come in leading sessions and things like that. Have you seen a ripple effect in terms of those individuals learning about brain injury and learning about the framework of kind of a social participation approach?

Rik: I think I understand that question. I'm going to answer it in two ways, if my working memory will hold on with me. One is identity for the person with brain injury themself. Referring to our crew as bakers, or salespeople, because we have backup house where folks are doing the baking, we also have front of house where the sales are happening in restaurant lingo. Some folks only work in the back, some folks only work in the front, sometimes people do both. So, we referring explicitly from the beginning, we decided not to use client, or participant, or volunteer, certainly not patient in this context. But "baker" organically came out from that initial pilot work. And it's been really fun to observe, we had three out of the four bakers who started with us four years ago are still with us. One dropped out because of other life demands. And to see their identity formation, and recreation, and re-development all tied to this idea of self-efficacy, developing strengths, feeling success, all back to Mark Ylvisaker's work here to Ylvisaker and Feeney and identity formation and recreation. Our crew, our bakers are actually identifying as bakers, right. And these are people who had never baked before, baking was not their life goal, but participating and having something meaningful to do. And a place to go, a place to feel safe, a place to feel accepted, a place to feel like you didn't need to explain your brain injury, has all become part of that. And we've got a manuscript in process hopefully coming out soon, we've submitted it to the journal work with my colleague, Sarah Foidel, who's an OT faculty, using an OT lens to look at this, how a functional task like baking, like a work task, helps to improve doing, being, belonging, and becoming this OT framework lens. So, by doing and getting better, you have this sense of being, and that turns into this sense of belonging, and then the sense of becoming, and reformulating this identity. So that's been a really fun theme for me to observe and to continue to develop and think about other ways we can help folks with this identity emergence, and really this idea of self-efficacy and feeling good. The second way I was going to talk about that question was the ripple effect on the community. I think that might be what you're referring to as the ripple. So, getting involved with the farmers market had this wonderful way of engaging our bakers and folks with brain injury in a whole new way and reaching the community in a whole new way that I had not experienced before. Right. People go to the farmers market, not because they're going to learn about a medical condition. People go to the farmers market because they want to chat with the vendors and buy their supplies. And so, lo and behold, the first farmers market we went to happens to occur at a hospital, a big, big hospital in Portland called OHSU, and every Tuesday they do a farmer's market outdoors in the summer. So, I didn't even know it existed. I looked on the list of farmers markets, and I said that's the perfect one for us to try to start off with and the community of people, just coming by hearing the story from our bakers firsthand, "I made these cupcakes", I am proud of this work, and let me tell you a little bit about brain injury while you're here. Every farmers market we went to so that first summer we did one a week. The second summer, we were doing up to five a week, five different markets as we were growing and expanding and taking it to scale. Every market we went to there was not a day that went by when someone did not have a personal connection to brain injury. Right. And we talked about this and that was great for the students to see too. We talk about this, that brain injury acquired brain injury is such a big population. And many people have some kind of connection, a mild concussion, uncle, a family member who's had a stroke, someone they know has had a brain tumor, a colleague, a coworker that was involved in a car crash and had a TBI, high school friends. It is so prevalent and so pervasive and the reception from the community throughout has been nothing but positive. And folks seeing how brain injury is so unique from person to person. One of our Baker's has significant dysarthria. And his intelligibility, I would say is probably 50% to an unfamiliar listener. And yet he is so social. He was our front face of the bakery at one of the local farmers market and he developed groupies who would come back each week just to chat with him and hear what he was up to, to see what cupcake he had made that week. He also has significant ataxia by the way and has made so much amazing progress in the three years he's been working with us. He now makes our cupcakes and frosts and garnishes, does all the decoration on our mini cupcakes that we distribute to a local grocery store. And not everyone gets to do that. And so, imagine someone with severe ataxia, intention tremor. Initially, he would just mix our ingredients, I'm getting off on a little tangent, but he's a really powerful story. Initially, he would just mix the ingredients, and he didn't want to scoop the batter because that was too challenging. So, we worked with him hand over hand, did some modeling and support and he learned to scoop. But he didn't do any frosting. So, he went from just mixing, then we added in scooping, then we added in making the frosting then we added in and this was over the course of the first year. Then we added in frosting and learning we do one technique, we do a swirl technique on almost all of our cupcakes and learning to master that with an intention tremor ataxia, hand over hand, the benefit of motor learning, boy did that pay off hand over hand, modeling, fading that over the course of six months, he learned to frost on his own. But he didn't garnish, that was too much of a fine motor task. And eventually, he's now at the point where he's doing our mini cupcakes, which are harder to do and garnishing them in the benefit again, of this systematic, repeated supported learning. Folks can learn.

Jerry: Wow, I am still patting down the goosebumps, Rik, just amazing I, I could have 42 follow ups, but I just want to highlight a couple of things you said. I love the terms, bakers and salespeople. That idea that it's not a person with a brain injury, and it's certainly not a patient, it's just so important. And you highlighted Ylvisaker's principle of renegotiating identity and having a purpose and a value. And certainly, these individuals from what you've described do. Is it okay, if we share some sort of a reference to that forthcoming article in the journal of work?

Rik: Sure. I'll send you the link. It's been submitted. So, we're awaiting a decision.

Jerry: Terrific. And I didn't even know there was a journal of work. But that makes sense. So I wanted to highlight that framework of doing, being, belonging, becoming. What a terrific, insightful framework that really aligns with LPAA. And I think our our listeners will definitely appreciate moving along that continuum and your illustrations, your stories cover that perfectly.

Rik: Yeah, it's apparently a pretty well understood and accepted framework for occupational therapists. It was new to me, but should be pretty part and parcel for most of our OT colleagues.

Jerry: Well, that speaks to your point earlier about interprofessional education and the reason we need to have our eyes and fingers in those OT journals as well to learn those things. Because that that's so insightful in terms of the work that we do, and certainly the work that you do in this context.

Rik: Absolutely.

Jerry: I was gonna ask you to share a little bit about the people and the outcomes, and you kind of started doing that. Can you talk a little bit specifically about speech and language, cognitive communication outcomes in those contexts and any broader ones too? We'd love them all.

Rik: Absolutely. So, we're doing ongoing program evaluation as part of this nonprofit bakery program. Along the way, I've been sort of adjusting and figuring out with the boards, how we are operating and what we are expecting out of our different crew. So initially, the goal was really for folks to come through our training program and graduate and move on into another paid employment. So, our bakery program is really looked at as a pre vocational model. Most of our crew are volunteers and coming in to get this training and opportunity. Along the way, as I've been interacting with more and more folks, we've had about 50 different bakers, salespeople, folks with brain injury come through the program, with varying ranges of cognitive communication challenges. So, along the way with our 50+ folks, we've had three graduates. And when I say graduates, those are three folks who have gone on to other successful competitive paid employment. And if you look at the vocational rehab literature, paid employment is really this gold standard idea of meaningful outcome when it comes to return to work. And full time being that ideal goal. So, we've had three folks successfully graduate from our program. One of them, Leslie, has a testimonial on the website, www.sarahbellumsbakery.org. You can watch her little 10-minute video story, she actually worked as an audiologist for many years before her series of strokes. And then with a series of six strokes over a short period of time, was unable to return to work, had significant interfering cognitive challenges with attention and with word finding and a mild aphasia. And it wasn't until she came and experienced success and got this idea that she could actually do it, she could return to work, she actually quickly moved up the ranks from being a salesperson to a baker, to a person in charge and helping to manage the front of house because of her ability to benefit from the structure and continue to grow. So, she's got a great testimonial on the website. Two of our other graduates, again, moved on, got that confidence, I think that's a big one, the confidence, the experience, the awareness, the ability to integrate that with how to use and adapt their strategies. I can go off on a tangent here too, you got to have a purposeful, meaningful opportunity to use these strategies. And when we're working in our traditional therapy settings, we can drill and talk about how wonderful it would be to use these in everyday real life, but again, I've seen folks with significant memory challenges start to use their external tools much more successfully and consistently now, with an actual opportunity with natural consequences. There are consequences when you don't show up to work. And that affects the entire team. So that was a little tangent about functionality. Where was I going?

Jerry: Um, let's see. I think just thinking about outcomes in general,

Rik: Ah yes, outcomes. We can delete that little segment. Yeah, our other ways that I've been starting to reconceptualize outcomes is not only thinking about competitive employment, paid employment, but also how we can continue to be a place that will support long term volunteer, prevocational, social opportunity, life participation for folks with cognitive challenges. Along the way, I've been reading and learning and collaborating with vocational rehab counselors as well, and the vocational rehab model of supported employment. The philosophy is that anyone can work, and anyone can have a supportive employment, paid employment opportunity. The challenges of getting that to happen for folks with brain injury are real and significant though, which is one of the reasons why I created Sarah Bellum's bakery just because there are not many opportunities for adults living with cognitive communication challenges after brain injury as you know. Where was I going with this tangent? So vocational rehab, this idea that anyone can work in a paid employment. It takes a lot of support. And it takes a lot of work to create a supported setting where folks feel empowered and want to come back to work and want to be able to participate and engage and having this therapeutic mindset and understanding about acquired brain injury and the number of repetitions the amount of systematic instruction, how to provide maximal cueing and support initially, how to do that while supporting the person's self-efficacy and confidence and self-esteem. And how to do that in a way that builds skills. I have found really requires some clinician clinical knowledge of cognitive rehab, and it's really hard to train a paraprofessional, a non-cognitive rehabilitation person to provide that level of support, to really help the person be successful. And of course, with brain injury, especially when we get into more significant challenges, generalization is always going to be a challenge. So, you change and get a new boss, you change, and you have a new work setting, they change the system, they change the process, that's going to be challenging when someone has executive dysfunction, memory challenges and significant cognitive challenges, so being able to provide that ongoing support is also important. And folks with brain injury don't typically get ongoing support through vocational rehab.

Jerry: Yeah, wow. Those are some pretty terrific outcomes. And I want to emphasize this fact, you said, you know, gainful employment, preferably full time is the ultimate kind of gold standard. But this is an opportunity for people to do something meaningful, and something that does rebuild identity, and purpose. And so, what a, what a terrific outcome and just look forward to hearing and reading about more of those over time.

Rik: Our vision for Sarah Bellum's Bakery and Workshop with that hat on as the program director there, the vision of the nonprofit organization is to see people with brain injury in paid gainful employment for every person with brain injury who wants to work. And that's our pie in the sky vision, of course. And one of the ways that I will continue to work on that with my also professor hat on is I'm very interested in continuing to collaborate with vocational rehab and help to get the word out about cognitive supports and cognitive systems that can help support adults with acquired brain injury.

Jerry: Well, you certainly have a lot of experience to draw on for that, so that's terrific. So, with all of these experiences, certainly it's changed you as a person and the way that you look at things. I'm wondering about how that influences the way that you teach, the way that you think about cognitive rehabilitation, both of those things with this new lens.

Rik: It's a blessing and a challenge. Let's say, the more you know, the harder it is to teach. As much as I love cognitive rehabilitation, and I have a class dedicated to acquired brain injury, I'm very fortunate at Pacific University as a relatively newer programmer in our eighth year. In our graduate SLP program, I came in at the beginning and helped to design the curriculum and said, I want a class in acquired brain injury and my colleague, Dr. Amanda Stead, said I want a class in progressive, neurological injuries and dementia is her specialty. So, it's pretty unheard of, to have a separate class on aphasia, a separate class on progressive neurological impairments and a class and acquired brain injury. So, I feel very fortunate that I get a whole graduate class in acquired brain injury and cognitive rehab. That said, it's the hardest class that I teach, because it is my area of expertise, right? So, Scholarship of Teaching and Learning and thinking about how are we actually going to distill down I want them to know everything that I know and have all of my experiences. But how do I actually prioritize? What are the essential things that they really need to know, what's interesting to know, and what's not relevant? So, I think a lot about that my teaching has changed for many reasons. Over the last 12 years I've been in academia and trying to constantly distill it down is one of those thoughts but how has Sarah Bellum's changed my teaching, in addition to getting involved with the support groups and having this really functional life participation, purposeful activity, lens, return to work is something that is much more on my radar now. And when I talk about acquired brain injury, a really honing in on who are the peak incidences of this population to? Adolescence, working adults, and the elderly. Falls, falls, crash, motor vehicle crashes, sporting events, especially for TBIs. So, adolescence, just working on getting through high school transition programs with more severe challenges and entering a workforce. How are we going to help support them through entering the workforce? That's a very purposeful, meaningful life participation goal. Someone in their 20s, 30s, 40s, 50s, 60s, right at their peak in their prime of their working years. Yes. 60s, 70s? Yes, we don't judge. People are working throughout the lifespan. And that's a major part of our identity, and Peter Meulenbroek's work has helped inform this. And he's on our ANCDS TBI writing group as well and chairing that committee currently. What is the purpose? And how do we identify work? as working adults, it's one of our primary identities. I am a speech language pathologist. That's the first way that I identify myself. And if I was not able to return to that, that would be a major reframing required for my identity. So, thinking about return to work, how can we continue to think about return to work as one functional, purposeful, meaningful activity to help our clients get back to regardless of where we are along the continuum of care. If you're working in acute care, inpatient rehab, outpatient, community care, skilled nursing along the way, one of the challenges might be identifying functional goals. So, in addition to the ADLs, IADLs, things that they might need to be able to do to take care of themselves at home. How can we also help to support them in a process to return to work and accessing other community resources like vocational rehab, like a program like Sarah Bellum's Bakery and Workshop, which, again, is why I founded and created this program, because nothing else like it existed. So maybe a little tangent also, may be part of my big picture goal is to inspire others, to want to pick up similar programs and there's no magic in baking, it doesn't have to be cupcakes. It's about finding something that you're passionate about, and helping to create processes that will support folks to have the opportunity.

Jerry: Well, that's a terrific transition to my final big question. And I think you also talked about this idea of starting small before. So, what advice would you give someone who has a big idea like you just to bring it to fruition, as you did?

Rik: First of all, amazing, fantastic. Find another person, at least one who has a similar passion that can help you to initially develop. So, I was fortunate, I was part of another nonprofit organization called Brain Injury Connections Northwest, which ran several support groups. And through that I was the secretary of their board at the time. Through that work, I had the connections, I had some infrastructure to help think about creating this bakery program. That was critical, find collaborators. My occupational therapy colleague, Dr. Sarah Foidel, has also been instrumental, not only in bringing that OT lens, but in helping to think about and shape processes that support our folks. Third, would be funding. There's a lot of startup funds required for any similar startup program. We required startup just to buy some of the initial equipment, we needed mixers, because the mixers that they had at the rental kitchens we were working at, were really small and broken down. And so, we invested in some larger mixers. We had to have money to buy our ingredients, to buy the tent that we needed to go to the farmer's market. So that kind of infrastructure. As a nonprofit, we could also engage in fundraising, so when we actually got in our brick-and-mortar shop in southwest Portland, we held a big fundraiser to help raise funds for that. So, I don't know if I'm answering your question, big picture, I would say one, find some helpers, people who are also passionate about your idea, two, find some funding, and three, take it slow and give yourself grace. You will have a lot to learn along the way. We are speech language pathologists I'm assuming that's most of your listenership here. But I am so open and so enjoying learning something new. As I often try to tell my students too in cognitive rehab or in language aphasia therapy and motor speech disorders, it's all similar. When you get to work with adults, you're not going to be the expert in their life. They're going to be the experts in their life, and they come from all different backgrounds, and experiences. So, we have the lens to think about communication and cognition and speech and language to help them frame that. But my clients have taught me so much I worked with a guy who invented the flat screen TV and worked with a wood shopping person, you know, high school gym coaches, preschool teachers, the whole gamut. And you don't have to be an expert in any of that, right? Because they bring that expertise and knowledge, but we're helping to find that lens through which to view cognitive communication to help give them tools and supports. So, you also, if you are in venturing on a new endeavor like this, don't need to be the expert in all of those areas, but find the people to help you with all of the logistics and give yourself grace to take it slow. We started very small. And in our fourth year, now we're operating a full-time program. And of course, COVID-19 is a whole different story. Everything changed in March of this year, we don't have time for that story.

Jerry: Well, what terrific advice and you have offered so many insights, not into just running a cupcake shop, but into life participation and applications and extensions of that to individuals with acquired cognitive disorders. So, we are just so pleased to have this opportunity. Anything that we missed, anything that you want to get back to that we didn't get a chance to talk about, Rik?

Rik: I'm sure there are things, I'll just highlight and say that it's not about the cupcakes, right, and the public education that's come out of this too and public walking into the shop, walking by the shop and just the name, Sarah Bellum's, that was one of the initial investments that we had also to hire a marketing person. That was the best $3,000 we spent for someone to come up with the name Sarah Bellum's Bakery. Of course, it's a play on words, and when we talk about it, it's fun to see customers say, "who is Sarah? Is she hear?" I say "no, Sarah is not a person." One of our bakers, I'll end with this story. One of our bakers said it best he loves to play on words, with mild executive dysfunction, really one of our star bakers. At one of the first farmers markets, someone asked, "who is Sarah?" and his response was, "you know, she doesn't like to be in the limelight. She stays in the back, but she keeps us all coordinated." How's that for a description of Sarah Bellum?

Jerry: Wow, that is terrific. That might get an A on one of my exams, one of my neuro exams.

Rik: Yes.

Jerry: Well, thank you so much, Rik, this has just been a really fun conversation. I know our listeners are going to love it. So, on behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations podcast. For more information on Aphasia Access and or access to our growing library of materials, go to www.apashiaaccess.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. Thank you, Rik. That was terrific.

Resources:

• www.sarahbellumsbakery.org
• Baking Their Way to Job Skills: A nonprofit bakery pairs speech-language pathology students with survivors of acquired brain injury to pilot a functional return-to-work program. Joanna Close, MS, CCC-SLP, https://doi.org/10.1044/leader.AE.23022018.40
• Foidel, S., Lemoncello, R., McNicholas, J., Livaudais, C., Rogers, K., & Forero, L. (In Review). Doing, being, becoming, and belonging: A mixed methods review of an occupation-based prevocational program. Manuscript submitted September 2020 to Work.

Ellen Bernstein-Ellis, Director of the Aphasia Treatment Program at Cal State East Bay speaks with Dr. Joanne Lasker. We'll have the pleasure of discussing how AAC and LPAA models can work together to support meaningful intervention and participation for individuals with aphasia.

Guest Bio:

Joanne Lasker is an Associate Professor in the Department of Communication Sciences and Disorders at Emerson College in Boston, MA. Most recently, she has served as the Graduate Program Director for the new Speech@Emerson Online Master's Program. She has published numerous papers and chapters related to assessment and treatment of adults with acquired communication disorders who may benefit from augmentative and alternative communication techniques, in particular people living with aphasia and apraxia of speech. In collaboration with Dr. Kathryn L. Garrett, Joanne created an assessment tool entitled the Multimodal Communication Screening Task for People with Aphasia (MCST-A), designed for people with aphasia who may benefit from AAC strategies.

Listener Take-aways:

In today's episode you will:

• Learn how a recreational sailing program for individuals with aphasia positively impacted impairment, participation, and personal domain changes.

• Gain some "insider" advice on how to administer two assessment tools used for aphasia AAC evaluations

• Find out how Life Participation and AAC approaches both embrace a relationship-centered philosophy.

Edited Interview transcript follows

Ellen (interviewer):

Welcome Joanne, I am so glad we get to have this conversation today.

Guest: Joanne Lasker

Thank you for having me, Ellen.

Absolutely. We can just jump into this first question. Do you have a favorite clinical experience that points to the value of incorporating the life participation approach to aphasia LPA into your clinical work?

Lasker: I would love to speak about a client that I worked with fairly early in my career. He was the type of person who loved to tackle difficult things. And he was, of course, before his stroke right handed. When he had his stroke, he chose to keep his " good" working left arm looped behind his back in his belt, and he forced himself to use his impaired limb for all of his daily activities. He essentially implemented a form of constraint induced limb therapy on himself. He was pretty amazing. He ultimately regained full use of his right hemi-paretic arm. When I first met him, he had been doing melodic intonation therapy for his aphasia/apraxia for about six years. We evaluated him and arranged for him to obtain a speech generating device through his insurance.

When he received this system, he immediately took to it. Very quickly after he acquired it, he came in and showed me how he used the pre formulated messages on this tool for his own speech practice. Now, I didn't suggest this, but he chose to do this himself, similar to how he chose to work on his own limb use. We engaged him in treatment around both improving his use of the speech generating device and also improving his speech productions through a series of treatments. We were using a combined restorative and compensatory treatment approach. And he did ultimately regained some spoken language. But he continued, notably, to use his speech generating device across all activities in his life. And his case, illuminated for me how important it is to combine restorative and compensatory approaches to help all of our clients really meet their life goals and fully participate in their own lives.

I think that really very much aligns with LPAA values. And that is the focus of today's conversation. But first, I have one more fun question I want to ask you. I've been following your AAC work for many years and it's truly informed my practice. I want to thank you for that. But at ASHA 2019, we got to share this great conversation about your poster. And your poster wasn't on AAC, it was actually a sailing project with individuals with aphasia. I was quite surprised when I stopped and read it and looked at who I was talking with. Tell us a little bit about that endeavor, even though we don't get to go sailing, right now.

Lasker: Yes, of course. I first want to acknowledge my colleagues at Emerson College, Laura, Glufling-Tham and Lynn Conners who are both involved in the Robbins Center at Emerson College, because without them, the sailing project wouldn't have happened. Laura had a daughter who was very involved with sailing. And at Emerson, the Robbins Center where we see our clients, is a very short walk to the Charles River. There's an active community boating organization there. They offer specifically accessible sailing programs. We decided to offer this as a 10 week activity to adults in our acquired disorders groups from the Robbins center. It was a wonderful experience because we were able to integrate their communication goals with an engaging, exciting activity on the water. The people with aphasia who participated in this were all accompanied by a student clinician. We actually did go out on the water. We began each session with a short school experience where the students and the clients were on the shore with instructors from the sailing school learning all of this terminology on how to operate a sailing vessel. They learned terms like tiller and jib, and we learned terms like tiller and jib. Those concepts were then utilized in the boat, along with visual supports for some of our clients with aphasia. Then we did pre and post test measures on the individuals who participated. We found that many of our participants, and they ranged in severity of impairment and also physical capability, made changes in their auditory comprehension, which is interesting, as well as their self-ratings of their own communicative confidence. And some of the changes that we noticed were also in quality of life as assessed through The Assessment of Living with Aphasia tool. It was a really productive and fun kind of activity that we did with them.

At the ASHA poster we tried to brainstorm on the ever intriguing challenge of what measures best capture outcomes in this type of participation project. I just wondered if you've had any new thoughts about that?

I wish I had a great answer for you. But I continue to believe that we have to triangulate our outcomes. So when we reviewed the outcomes pre and post, we found that we saw changes in different people through both the standardized formal assessments, particularly as I said, auditory comprehension, but also the more self-efficacy related measures, and then also the interview with the client and interestingly, their spouses.

One of the most compelling stories involved one of the clients who had a very significant global aphasia. He was, prior to his stroke, a big outdoors person. He was the Scoutmaster for his sons. Before his stroke, he did sail. While he was really struggling to produce spoken language, on the boat, using the tiller, he was supreme--he was the best one at that activity. His wife spoke to us about the fact that when he was on the water, she actually used this terminology, she said his aphasia disappeared. He became, "like his old self". She used that phrase exactly. He himself communicated to an unfamiliar partner later, using a combination of gesture and drawing to talk about his favorite experience from sailing, which was doing a slalom race in the water. He drew a figure eight on the table. He indicated very clearly how good that experience was. And it was such a beautiful example of using a participation based approach and a combination of strategies and tools to support the communication of our clients. It made such a huge difference in this this person's life

It makes me think of what Dr. Aura Kagan says so often about the importance of unmasking competence. And it seems like that's a beautiful example of that, offering meaningful activities to individuals with aphasia.

I want to credit you with the title of our episode, Cementing the Friendship Between Augmentative and Alternative Communication and Life Participation. It's something you said when we first spoke about this conversation. In fact, in the 2013 SIG 12 article about communication partner training, you say that the Life Participation Approach is consistent with the principles of AAC. So, it seems to me that AAC and LPAA share the same end game Do you agree?

Lasker: I completely agree they have the same end game and the same underpinnings. So meaningful participation is really at the core of AAC. And we want to credit Dave Beukelman and Pat Mirenda for this idea that there's a participation model that underlies all of AAC work. We know that AAC works most effectively when we target that participation in ways that are specific and personalized to every individual. So I, for example always ask anyone I work with whether they are coming to see me for specifically AAC purposes or aphasia related language purposes. What do you want to be doing that you are not currently doing in your life? And with that question, it leads me to a set of meaningful treatment goals and strategies. So I've never seen a division between AAC and the Life Participation Approach. To me, they are the same.

I've often wondered why there was ever a division. One of the thoughts I've had, as we've considered this topic is whether the presence of technology is somehow concerning to folks who are embracing the life participation approach and somehow they feel that AAC is this other approach in our speech treatment arsenal, that doesn't get included. I think that we have maybe somehow turned people off by including AAC technologies as part of our tools strategy kit. But I think, of course, that's crucial.

Another thought I have is that maybe we use the term partner dependent, and that some people might have felt offended by that. One of the things we've tried to do is to stress that this is a continuum of skill. And when we say dependent, we're talking about relying on strategies to support communication, not that the person themself is in any way dependent on another person. So I wonder if there have been potentially some misunderstandings between these two branches of our field and I appreciate the opportunity to clarify what I think is similar, and in fact, I think they're highly similar. We really have tried to emphasize this continuum of skill set for people who have aphasia. We never intended to imply that a partner dependent communicator was a bad thing. We were simply talking about their ability to access the strategies and tools that AAC has to offer. To my mind, LPAA and AAC, are very similar. In fact, I have a hard time finding differences between them.

We were talking earlier, what are the AAC and LPA models? Are we close friends? Are we cousins? Are we siblings? And I think that's what you're what you're really addressing right now.

Lasker: I think I am saying that they are actually super imposed upon each other. If it makes you feel more comfortable to think of the Life Participation Approach as the umbrella and AAC as a set of strategies within that umbrella, that's fine. I don't have a problem with that. I just want us to be clear that we're not operating from opposite or opposing ends of the field. I would say we're very close siblings, if not twins, in terms of how we interact with each other as a field. It's always made me a little sad, that when someone was working with aphasia, they didn't think, "Oh, let me try some AAC approaches." And people from the AAC perspective, many of us have always had a foot in both camps, right? We've always been in the aphasia world and in the AAC world. Kathy Garrett and Aimee Dietz, Sarah Wallace, Julia King, Fischer, all of us have been in both of those worlds. I think it's really important that there's a close tie between these two sets of ideas. I don't see why there should be any conflict.

Linda Worrall and colleagues in a 2010 article argue that relationship-centered care should be at the heart of aphasia rehabilitation and the life participation approach is a receptive model for that relationship centered theory. Now, in your 2013 SIG 12 article about teaching partners to support communication, you spoke to the SLPs role as a privileged and trusted one. So is it a relationship-based approach? Is that another point of commonality for AAC and LPAA?

Lasker: Yes, I think so. Because, certainly, we in the AAC world often think about social purposes of communication. We get a lot of those ideas from Janice Lights work from the 80s, 1988 in particular, where she highlighted what are the reasons we communicate in the first place? What are the reasons we actually engage with other people? To communicate basic wants and needs, to transfer information, and then to engage in social etiquette, but most importantly, to engage in social closeness. So the idea of being able to initiate, establish, and maintain relationships and conversations with other people has been at the core of what we do in AAC. We want to target that isolation that people with aphasia and other people with severe communication disorders experience. Typically, in the cases of people with aphasia, they have means to indicate their basic wants and needs, and they can get that stuff taken care of. What they can't do is engage as they used to in their lives. We try to address the importance of those relationships when we program systems, create messages, and give them strategies and tools that incorporate life activity and partners to improve these outcomes.

You have a award winning 2008 article with Katherine Garrett in the ASHA Leader. It's called Aphasia and AAC: Enhancing Communication Across the Healthcare Settings. Joanne, it's been downloaded 6700 times, which I think is pretty impressive. That article points out that AAC for people with aphasia goes beyond talking boxes and picture boards. Rather, it's a comprehensive collection of communication strategies that provide external support for people who cannot understand or generate a message on their own. That same ASHA Leader article provides a framework for understanding the conversational status of the individual with aphasia as either an independent or partner dependent communicator. And you have a detailed set of subcategories as well. You mentioned this earlier, that maybe that taxonomy has been a problem, but can you describe how that that approach directs treatment planning?

Lasker: So we always want to maximize outcomes for all of our clients, all the people we work with. In the framework that you mentioned, we talk about people across the continuum of living with aphasia, both in acute care in rehab hospitals and outpatient in their lives. After all of that is done, we talk about how they may progress from improving speech and language skills, but also their strategic use of the tools that we can offer them to meet their life goals. When we talk about accessing AAC tools, we talk about moving from a more partner supported end of the continuum where they need those tools. And more importantly, they need support from partners to access those tools. So we're going in with the assumption if we work with people who have aphasia, and we are incorporating an AAC mindset, that we can use whatever tools we want. It's all multimodal, we always want to incorporate a whole variety of tools, but we want to help our clients improve in their ability to strategically access those strategies, right? There's kind of a redundancy to it, but you get what I'm saying?

Absolutely.

We want them to be able to literally make use of all of the various methods for communication and participation. Some people need more support to do that. And then they move through a phase that we would call transitional, where they maybe need some intermittent support or queuing, a partner to say, "Hey, can you show me that in your book?", or a partner to say, "Let me write that out for you so that it's clearer." And then ultimately, on the other end of this continuum. We have a person with aphasia who does what we all love to see, right? You meet this individual, he pulls out his wallet to show you his address on his license. He gestures that he caught a fish last week, and he uses his residual speech and all of the other tools. Well, that's what we all love to see. But sometimes we have to help people with aphasia develop that skill set. And I think that's what an AAC lens to the work with people with aphasia can do.

Maybe we can discuss some other terminology and tools in this conversation. I've noted that sometimes we use the same terms like written choices or keyword writing. And those are both strategies for lengthening and deepening conversation. And they emerged out of the AAC research, is that right?

Lasker: That is so true. So Kathy Garrett and David Buekelman wrote about augmented input conversation strategy and written choice conversation strategy. These are parts of the same overall approach. Augmented input is where we're going to be as partners in the conversation, offering written keywords, gestural cues, or visual supports to help someone with aphasia tune into the conversation who may need additional input to truly understand and decode the language that they're hearing. And then the written choice conversation strategy, which is, instead of helping to improve receptive understanding in a client with aphasia, it's actually helping someone with aphasia use a response pool provided by the partner to engage in an expressive way to participate. They can offer their ideas and information by responding to the choices offered by the partner, or by indicating along a rating scale, how they feel about a particular idea. So those are examples of the written choice conversation strategy. We couple that with augmented input, and we have two very powerful techniques that we can teach partners to help support people with aphasia in conversation.

I wonder if that's one little point of difference? I don't always use the term augmented input. You know, I talk about multi-modality approaches. But are they the same? Are we just using different words?

Lasker: Multimodal, to me, includes incorporates augmented input, but also allows for the use of gesture and picture supports by the person with aphasia. I think it's all a huge collection of tools and strategies. And I agree, maybe that is also a point of difference in that the partner has a role in conversation that may appear initially, for some partners, even to be burdensome, not something that they bargained for. Right? I didn't expect to have to offer the support to someone with aphasia to participate. But in fact, it yields such a successful result that part of what we do is showing that to families in our sessions with people with aphasia. I do this very early in my sessions, showing partners, "Look, I offered these sets of choices to your wife, and she could tell me where she wanted to go to dinner. And she could tell me that she really is not a big fan of your brother" or whatever it is. So yes, incorporating that into the work that we do is really important.

You just really touched base on my next line of thought. There's a growing evidence base around the training and implementing skilled communication partners. Both the Life Participation Approach to Aphasia and AAC embrace that vital role. I'm giving a quick shout out for the Aphasia Access Teach-in, because Aphasia Access has posted all of the presentations, including a fantastic talk by Dr. Christine Marie Hale looking at current practices, teaching models, target groups, and system impact of communication partner training. I just want to let our listeners know that this resource is on the Aphasia Access website.

You've done some wonderful research looking at the impact of communication partner attitude on the outcome of AAC. You address Finger's framework for key personnel in your 2001 article with Jan Bedrosian. Can you describe that for us?

Sure. What we did there was focused not only on the communication partners attitude, but also the person with aphasia's attitude. We actually did some work with a client who had aphasia, who benefited greatly from a voice output device with some preprogrammed phrases on it. However, as is typical with many people who have aphasia, he was initially reluctant to use the system in public because he felt it was stigmatizing. Although, of course, it was a useful tool for him. He acknowledged it was useful, but he actually communicated to us, "Don't feel right. Don't feel right" because it didn't feel right to him to use it in public. It was certainly a change from his habitual method of communication prior to his stroke which didn't require the use of a small computer that spoke. However, he acknowledged this was a good tool.

So we worked with him to desensitize him to using the system in public, as something that might work within his life. We began, of course, by staying within the clinic. We brought in unfamiliar partners to do role plays with him multiple times. Then we started to go out into the community as a team, with us as a support person. We went to various locations and helped him, as sort of a "standby assist", to use the system to engage with people in the community. What we found was that he received a variety of responses. But one in particular was particularly positive. This was from someone in a post office. He went up to the counter and he asked for stamps or something. And she said, "What is that? That is so cool. I wish my my mother had had that tool." She was so positive and so warm and so friendly. That went such a long way in helping this client to feel like, "Hey, this is okay. I was able to use it to communicate what I needed to say, and I didn't get a negative response." And so after that process of desensitization, he did continue to use this tool

It reminds me of the person I mentioned at the outset of our talk, the one who put his hand behind his back to train his other arm. He basically insisted that, even though his speech improved considerably, he needed this machine to help him in all the various aspects of his life. He lived independently. He had to take care of his home. He traveled. When we asked him do you need this system still to talk with, he said, "Oh, yes, I need it, I need it." And in fact, he traveled on airplanes with it. He went to the State Fair. He went out with it. He used it in the bar and ordered his drinks with it. He did everything. He appreciated being an ambassador for this system. Everyone has a different response, of course, to technology and the way it interacts with them and their life. But in his case, it was clear, it was not as much of a stigma for him, as it had been for this other gentleman, and we needed to go through a process of helping him alter his attitude towards the system that he was carrying with him every day.

I'm going to jump to this question then. Because as you reflect on your research exploring user and partner attitudes towards using AAC strategies, would you like to discuss the AAC acceptance models as they tie in here?

Lasker: Sure. We talk about a process by which we need to find the right mix of the person who fits well with the technology we're choosing in the contexts or the milieu that we're working in. So this is sometimes called the Matching Persons and Technology (MPT) model. It comes from work by Marcia Scherer, initially. We adapted it to help clinicians problem solve is this is going to be an appropriate tool for the individual? Do we have the person's skills commensurate with what's required of the system? Do we understand the needs that they have in their environment? Is their desire for participation being met by this tool? And so using this combination of looking at the person, the features that they need that are consistent with the technology and what it offers or the strategies and what they offer, as well as the demands of their own environment? Are they all consistent and aligned? If they are, we're likely to see a more successful outcome. What happens is when we have a person who has a tool that is not usable for them, whatever that tool may be, because it's too difficult or cumbersome or stigmatizing. They don't like the voice. There are lots and lots of reasons why a person might reject a strategy or a tool. So this model helps us begin to analyze that.

I'm going to shift to another tool. We talk about motivational interviewing as one tool for helping to collaboratively set meaningful and relevant goals. And you recommend a careful interview using the Aphasia Needs Assessment. Again, the link for this is in the show notes. The Aphasia Needs Assessment is a comprehensive set of questions looking at: Who are the partners? What are the preferred topics and contexts? What is the method of communication and functions and degree of success? It can feel like a lot to navigate with an individual with aphasia. Can you share some tips on how to use this tool to make it more aphasia-friendly? What's been your experience?

Lasker: We actually don't expect that most individuals with aphasia can do this tool independently. Instead, we offer this tool to the informant, often a family member or a spouse. And at the same time, we also want to take some of the items on this tool and deliver them with augmentation to the person with aphasia. We create a set of questions that have rating scales associated with them. So how important is it for you to talk about your service in the military or how important is it for you to talk about family finances on a scale of one to five? This is a lot like some of the work we talked about in AAC known as Talking Mats.

But we also take a lot from a tool called the Social Networks Inventory. Looking at the circles of communication partners for an individual with aphasia, one of the things we want to do is be sure that not only are our goals helping with a person's activity in life, but that they're engaging with the people they want to engage with. We did an analysis of the social network of a person with aphasia to determine who they would like to be communicating with. The way we had to do this was through written choice and augmented input to get this information from the client with aphasia who was very limited in terms of his ability to speak at that point. What we discovered was that this young stroke survivor wanted desperately to speak with his 10 year old son who was living at a distance and wanted to communicate with him. From this analysis, we came up with the goal of helping our client learn to use email more effectively, because that was something that he was stymied by. And if this had been done, a couple of months ago, or a year ago, it would have been about texting, right? Or FaceTime. But the idea here is that we want to support the completion of those tools through some of the partner supported communication strategies as needed. So we get the information directly from the client with aphasia as we can, and use informants to fill in the rest.

You mentioned another tool, social networks, which I think is a commonality between the Life Participation Approach and AAC. We both use that as a touchstone concept.

Another substantial AAC tool is the measure you and Katherine Garrett developed, the Multimodal Communication Screening Task for Persons with Aphasia. And you've generously made this open source. The link is in the speaker notes to both the test and to your 2006 article. It provides a very different type of information than a standard aphasia battery. Can you describe the tool and how you use it?

Lasker: Thanks for that question. It's so surprising to Kathy and me how widely use this tool has become. We developed it out of our own clinical need. We needed a way to look at the strategy usage by people with aphasia, how we would typify that, and their potential to benefit from AAC strategies. It's been translated into about 12 different languages. And that's amazing to us. We're happy to have that happen.

I know that it's a challenging tool to use, because we haven't created a standardized resource. But, we're certainly working on that. I hope to create some sort of video-based resource for it. But this tool is essentially a sample communication notebook that is given to a person with aphasia. They have an opportunity to look it through, and then the clinician or whoever's administering the MCST-A will say, "How would you tell me that you want to buy some new shoes?" "How would you tell me that you need to refill a prescription?" How would you, etc. So that's the idea.

As those questions are posed, the person with aphasia is encouraged to use any modality to communicate a response. It can be the communication book that they've just been given. It could be their speech or it could be a gesture. And the interesting part of it is that each test item can be delivered three times, so that it's not just once and done. It's a dynamic assessment tool. We're looking to see how much cueing, how much support, does an individual need to communicate this idea adequately to another person. As a result, by making it a dynamic assessment tool, allowing at least three different attempts to respond to this item, and then also cuing in-between items, we've made it very flexible, but also challenging to do as a clinician tool.

We've really appreciated it in our Cal State East Bay clinic when we've used it. But I'm going to be frank that we found the multi-dimensional scoring both incredibly rich and informative, but a little bit daunting to do live, especially with student clinicians. Do you have any advice? Or is it just a matter of practice--we'll get better at it if we just keep doing it? Are there any video training resources? You just were hinting that you might be working towards that?

Lasker: We are definitely working toward that. But, I do want to say that we don't do a good job of scoring it live either. A recording will really help you to score it. I want to also stress the most important scores. From this test, because you don't have to administer all of it, you can do portions of it to show how many attempts the client need to communicate this idea. So we're looking at overall number of attempts and overall number of cues per item because what we found, and this makes total sense when you when you think about it, someone who needs a lot of attempts and a lot of cues, falls more toward the partner supported end of the continuum. Someone who is actually able to communicate an idea, a concept with one attempt, or with only minimal cueing from us as the administrator of the test, that person moves towards that more independent end of the continuum. They're able to access strategies without a partner's support cuing them to do so. So those are the two, I think, most important pieces--how many attempts per item and what are the number of cues you provide? And you're free to provide as many cues as you want, because we want to see how much it takes for the client to be successful at communicating this idea.

That makes sense. That is how you start to hone in on your treatment planning, perhaps?

Yes, exactly. So in fact, that has helped us decide on where does this particular person with aphasia need support in learning how to access the strategies that we're going to offer them. It might be that they need help navigating from page to page or location to location, or maybe they need help determining which is the best method for them to use to communicate an idea.

So maybe we have a client who has lots of skill sets, but they need to learn that they should try speaking first, then looking in their communication book, and then maybe looking somewhere else, or using a gesture or writing down a first letter. We sometimes need to teach that sort of sequence of behavior to help. I think there's a misunderstanding, sometimes, that people should be just able to use AAC strategies without any teaching or learning. That is another misconception. I always tell the students I work with, you know, we don't come out of the womb knowing how to do AAC "right". It's not something we're born being able to do. We need to be taught. The MCST-A does highlight some of the things that we might need to be teaching our people with aphasia, so that they can access the strategies that could be helpful to them.

Joanne, we could do another show discussing how the AAC tools like visual scenes or communication remnants can increase participation of an individual with aphasia in meaningful conversation, because these are two more AAC approaches that are focused on individualization. I wish we had more time. But what else do you want to have opportunity to share about this "friendship" as we wrap up?

Lasker: I understand. I agree. I think I would like to acknowledge that with careful planning, with an extended time for clinical support, AAC interventions can really enrich the communication and participation options for people with aphasia, and their partners, virtually at all stages of their adjustment to living with aphasia. I think we want to be aware of all of the methods available, and not see AAC as a divide, as an other--that there's the AAC world, and then there's the aphasia world. I think that we should focus on ongoing assessment and intervention for people with aphasia over the long term, by reframing all of our work in terms of meaningful participation. And that includes incorporating AAC strategies. I think that can drive what we do in the future.

That is a wonderful closer to help us understand not to see AAC as an "other", but really as a way we work together and bring so much more richness and meaning to the services we provide. Thank you again for sharing your expertise with us today and with our Aphasia Access listeners and members.

On behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Conversations podcast. For more information on Aphasia Access or to access our growing library of materials go to www.aphasia access.org. If you have an idea for a future podcast topic, email us at info@ aphasia access.org

Resources: Citations and Links

• Garrett, K. L., Lasker, J. P. & King Fischer, J. (2020). AAC supports for adults with severe aphasia and/or apraxia of speech (pp. 553-603). In D. Beukelman & J.Light (Eds.), Augmentative and alternative communication for augmentative and alternative communication: Supporting children and adults with complex communication needs. Baltimore, MD: Paul H. Brookes.
• Lasker, J., & Bedrosian, J. (2001). Promoting acceptance of augmentative and alternative communication by adults with acquired communication disorders. Augmentative and alternative communication, 17(3), 141-153.
• Lasker, J. P., LaPointe, L. & Kodras, J. (2005). Helping a professor resume teaching through multimodal approaches. Aphasiology, 19(305), 399-410.
• Lasker, J. P. & Garrett, K. L. (2006) Using the Multimodal Communication Screening Test for Persons with Aphasia (MCST-A) to guide the selection of alternative communication strategies for people with aphasia. Aphasiology, 20(2/3/4), 217-232.
• Lasker, J. P., Garrett, K., & Fox, L. (2007). Severe aphasia. In D.R. Beukelman, K.L. Garrett, & K.M. Yorkston, (Eds.), Augmentative communication strategies for adults with acute or chronic medical conditions (pp. 207-242). Baltimore, MD: Paul H. Brookes.
• Lasker, J. P. and Garret, K. L. (2008). Aphasia and AAC: Enhancing communication across health care settings. https://doi.org/10.1044/leader.FTR1.13082008.10

Multimodal Communication Screening Tool for Aphasia

http://word.emerson.edu/jlasker/past-research/

Aphasia Needs Assessment

http://word.emerson.edu/jlasker/past-research/

AAC-Aphasia Categories of Communicators Checklist

http://word.emerson.edu/jlasker/past-research/

Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin, Eau Claire, speaks with our guest Dr. Louise Keegan about her work and the application of the LPA to serving persons with traumatic brain injuries.

GUEST BIO:

We're fortunate to have a conversation about her work and the application of the LPA to serving persons with traumatic brain injuries. Dr. Keegan is the founding program director of the Master of Science in speech language pathology program at Moravian College in Bethlehem, Pennsylvania. Her primary research focuses on identifying the linguistic skills of individuals with cognitive communication disorders after traumatic brain injury. She employs various linguistic analysis methods to investigate the communication, strengths and skills of this population, and also examines optimal treatment approaches for the communication cognitive communication difficulties experienced after a brain injury. In addition to clinical research, Dr. Keegan also conducts research in the Scholarship of Teaching and Learning one of my favorites, as related to the areas of clinical education, experiential learning, and problem-based learning. Dr. Kagan has numerous peer reviewed publications has received funding from the American Speech Language Hearing Association and has presented her work at many national and international conversation conferences.

In today's episode you will:

• Learn about applications of the life participation approach to serving persons with traumatic brain injuries
• Learn about the INSIGHT group for persons with traumatic brain injuries, a life participation approach grounded in training communication in authentic settings that are personally relevant and meaningful to the participants
• Learn about a chapter Dr. Louise Keegan and Dr. Peter Meulenbroek contributed to Audrey Holland and Roberta Elman's recent book on the Life Participation Approach to Aphasia
• Learn about how a problem-based curriculum helps train future speech-language pathologists and nurture a person-centered learning context that aligns with the life participation approach
• Learn about the application of systemic functional linguistics to research examining contextualized discourse of persons with traumatic brain injuries
• Learn about how humor can be a strength for persons with traumatic brain injury
• And, did you know that there is a parallel movement to the LPAA approach that is blossoming in the treatment of persons with acquired cognitive communication disorders?

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Janet Patterson, Ph.D., CCC-SLP, Chief of the Audiology & Speech-Language Pathology Service at VA Northern California, speaks with Jen Mozeiko, Ph.D., CCC-SLP, about aphasia, discourse and communication, a project at the intersection of aphasia rehabilitation, adaptation deficits, gaming design, and community connectivity.

Jen Mozeiko is an assistant professor Department of Speech, Language and Hearing Sciences at the University of Connecticut, where she leads the Aphasia Rehab Lab. Her research explores deficits in discourse production and adults following brain injury, and dosage and durability of treatment for persons with aphasia. In 2020 Jen was named a Tavistock Trust for Aphasia Distinguished Scholar, USA. In the questions and responses below you will read about Jen's work and the influence of the Tavistock award.

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Ellen Bernstein-Ellis, Director of the Aphasia Treatment Program at Cal State East Bay speaks with Sarah Baar, creator of the Life Participation focused Honeycomb Therapy website and we'll have the pleasure of discussing how to create life participation-based home programs for individuals with aphasia across the care continuum.

Guest Bio:

Sarah Baar is a private practice speech-language pathologist in Grand Rapids, MI. She's had the opportunity to work in many settings across the continuum including acute care, acute rehab, home & community, and outpatient therapy. In 2016, she started the Honeycomb Speech Therapy website as a way to promote person-centered and functional therapy ideas and materials for adult rehab. Most recently, she launched the Activity Studio as a way to share and promote use of participation-focused speech therapy materials. Those who have attended her speaking events enjoy her practical approach and tips that the everyday SLP can implement for a functional therapy approach.

Listener Take-aways:

In today's episode you will:

• Learn how a self-management model of aphasia management empowers the IwA to take an active role in their recovery process
• Hear about the transformation from providing worksheet based to LPAA focused home programs
• Compare and contrast home programs that use the medical vs. social model as their approach
• Learn about the PACT approach to helping your clients prepare for communicating with their medical providers

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Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, speaks with Tavistock Scholar Dr. Brent Archer about the crossroads between the lived experience and qualitative research methods.

Dr. Brent E. Archer was born in Johannesburg, South Africa. He obtained his Master's degree in speech-language pathology (SLP) in 2006, and practiced in rural hospitals and schools. After immigrating to the US in 2011, he provided SLP services in nursing homes located in central New York state and Louisiana. In 2012, he enrolled in the Applied Speech and Language Sciences doctoral program at the University of Louisiana, Lafayette. Upon graduating in 2016, he assumed a position as an Assistant Professor in Communication Disorders and Sciences at Bowling Green State University. Brent's research interests include facilitated conversations for people with aphasia, the lived experiences of people and families living with aphasia and life participation approaches to treating aphasia.

In today's episode you will:

• Learn about applications of qualitative research methodologies towards the Life Participation Approach to Aphasia.
• • Consider how we may best examine client values and perspectives.
  • Consider how we may support and reveal the perspectives of individuals with aphasia in guiding the research questions we ask.
  • Consider how qualitative methods like interpretive phenomenological analysis, ethnography, and conversation analysis may help researchers to uncover the lived experience of people with aphasia and their families.
  • Consider how information about the lived experience can help clinicians to better meet the needs of people with aphasia.
  • Hear examples of how community-based programming, such as training docents at the Toledo Museum of Art to provide aphasia-friendly tours, a program that Brent is involved with, can be a mutual platform for meaningful life participation (meeting an authentic need) and research in an authentic environment.
  • Consider opportunities to examine and support the recreational needs and desires of people with aphasia.
  • Consider roles that people with aphasia can play in their own groups and recovery process.

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Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at VA Northern California Health Care System, speaks with Dr. Katie Strong about the value of stories in the lives of people with aphasia as they think about who they were before aphasia, who they are now, and who they will become in the future.

Dr. Strong is an Assistant Professor at Central Michigan University in the Department of Communication Sciences and Disorders, and by the way, my colleague on the Aphasia Access Podversation team. Katie received her Ph.D. in Interdisciplinary Health Sciences from Western Michigan University in 2015 and at CMU she leads the Strong Story Lab. Her research explores how speech-language pathologists can support people with aphasia as they rebuild their identities and improve their quality of life by co-constructing stories about who they are and will become. Dr. Strong is a 2019 Tavistock Distinguished Aphasia Scholar. She is a founding member of the Lansing Area Aphasia Support Group, and currently serves as a Regional Director for A Bigger BRIDGE, a project dedicated to helping those with communication disabilities engage in research that is about them.

In today's episode we will discuss:

• The Tavistock Distinguished Scholar Award
• Aphasia Access
• Katie Strong's story
• Using stories as a way to connect with people with aphasia

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Ellen Bernstein-Ellis, Director of the Aphasia Treatment Program (ATP) at Cal State East Bay in the Department of Speech, Language and Hearing Sciences and a member of the Aphasia Access Podcast Working Group, speaks with 2019 Tavistock Scholar Dr. Sharon Antonucci from Moss Rehabilitation Center about her work involving semantic feature analysis within a group context, and a pet project, pun intended, involving her pilot research with animal assisted therapy and its connection to the Life Participation Approach to Aphasia, the LPAA model.

Dr. Sharon Antonucci is the Director of the Moss Rehabilitation Aphasia Center in Philadelphia, PA. She is a clinical researcher who has been working with those with aphasia and their families since 2001. Her work in aphasia rehabilitation integrates principles of cognitive neuropsychology, with those of the Life Participation Approach to Aphasia. She directs research in the assessment and treatment of lexical retrieval impairment in aphasia, outcome measurement for group aphasia treatment, and animal assisted treatment for people with aphasia, or work has been funded by the NIH, ASHA, and the American Speech Language Hearing Foundation. And she was one of four inaugural recipients of the Tavistock Trust for Aphasia Distinguished Scholar Award.

In today's episode you will learn:

• Learn strategies for introducing SFA into a group setting
• Learn the difference between Animal Assisted Therapy (AAT) and Animal Assisted Activity (AAA)
• Learn what factors make an individual with aphasia and his/her dog good candidates for an obedience training partnership
• Learn potential benefits to participating in a program that targets teaching your dog new skills

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Janet Patterson, Ph.D., CCC-SLP, Chief of the Audiology & Speech-Language Pathology Service at VA Northern California, speaks with Will Evans, Ph.D., CCC-SLP, about Aphasia Games for Health, a project at the intersection of aphasia rehabilitation, adaptation deficit, gaming design, and community connectivity.

Dr. Evans is an assistant professor and aphasia rehabilitation researcher in the Department of Communication Sciences and Disorders at the University of Pittsburgh. In 2020 Will was named a Tavistock Trust for Aphasia Distinguished Scholar, USA.

Will is spearheading a new project, Aphasia Games for Health, which is a collaborative effort among members of the aphasia community, professional game designers, and aphasia rehabilitation researchers. Together, they are seeking to 1) develop therapeutic games to help people with aphasia to continue to improve and connect long-term, and 2) help build and empower a broader aphasia games movement by providing resources for community groups, clinicians, and professional game designers to make games more aphasia friendly and accessible. This summer Will and his team are working on three prototype group aphasia card games that can be played in person or through group video chat, and which will be shared with the community for free through a creative commons license. Once their first prototype games are developed, they will be looking for people with aphasia and community groups to do playtesting, which is trying out the games and providing feedback to the team to improve the games.

In today's episode you will learn:

• about adaptation deficit, and how games can be used to support behavioral adaptation
• how games developed for use in video chat format can help persons with aphasia interact in each other's space to create rich communication context
• how a team of aphasia rehabilitation experts, people with aphasia, and professional game developers are working to build the vision of an Aphasia Game Library

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