Nov 24, 2020
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:
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
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