Episode #62 - Identifying Gaps in Aphasia Care and Steps Toward Action: A Conversation with Aphasia Access Board President Liz Hoover

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.): Insufficient awareness and knowledge of aphasia by health care providers and the wider public Insufficient funding across the continuum of care Insufficient availability of communication intervention for people with aphasia Insufficient intensity of aphasia intervention across the continuum of care Insufficient attention to life participation across the continuum of care Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care Insufficient or absent communication access for people with aphasia or other communication barriers Insufficient attention to depression and low mood across the continuum of care Lack of a holistic approach to community reintegration 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.