How can you provide the best support for adults with aphasia and help them make a successful return to daily life? Clear answers are in this comprehensive text, the definitive guide to research-based strategies, supports, and technologies that improve outcomes for adults with chronic or acute aphasia. Includes brief, instructive case studies and quick-reference lists of communication strategies and supports.
Original Title
Supporting Communication for Adults With Chronic Aphasia Excerpt
How can you provide the best support for adults with aphasia and help them make a successful return to daily life? Clear answers are in this comprehensive text, the definitive guide to research-based strategies, supports, and technologies that improve outcomes for adults with chronic or acute aphasia. Includes brief, instructive case studies and quick-reference lists of communication strategies and supports.
How can you provide the best support for adults with aphasia and help them make a successful return to daily life? Clear answers are in this comprehensive text, the definitive guide to research-based strategies, supports, and technologies that improve outcomes for adults with chronic or acute aphasia. Includes brief, instructive case studies and quick-reference lists of communication strategies and supports.
MEDICAL / Audi ol ogy & Speech Pat hol ogy A speech-language pathologist and aphasiologist can no longer say, I dont do AAC. Te authors redefne aphasia management and show us that communication supports can be applied in every area, from assessment and treatment to policy and advocacy for all. A must-read. Melanie Fried-Oken, Ph.D., CCC-SLP, Oregon Health & Science University A wealth of practical and relevant information on intervention with the ultimate goal of living successfully with aphasia. Ellayne S. Ganzfried, M.S., CCC-SLP, ASHA Fellow; Executive Director, National Aphasia Association A welcome and long overdue addition to the aphasia literature . . . Practice based on the principles contained in this book can change the face of aphasia treatment! Aura Kagan, Ph.D., Executive Director, Director of Education and Applied Research, Aphasia Institute, Toronto, Canada
T his comprehensive text is the defnitive guide to research-based strategies, supports, and technologies that improve outcomes for adults with chronic or acute aphasiaand help them make a successful return to daily life. Professionals will get the foundational knowledge they need to ensure efective communication support across all health care settings and stages of recovery implement therapeutic assessments that involve people with aphasia as proactive partners leverage technology to support communication weave communication supports into inpatient and outpatient therapy conduct treatment in small groups to enhance communication and reduce social isolation support participation in everyday situations strengthen social relationships by training communication partners maintain ongoing, long-term communication support that adapts to changing needs An ideal textbook for graduate courses on aphasiaand an indispensable resource for practicing SLPs and other service providersthis book will help professionals strengthen the communication skills, social competence, and life satisfaction of people with aphasia. ABOUT THE EDITORS Nina Simmons-Mackie, Ph.D., BC-ANCDS, is Professor and Scholar in Residence at Southeastern Louisiana University in Hammond, Honorary Professor at the University of Queensland, Brisbane, Australia, and Research Consultant at the Aphasia Institute in Toronto, Canada. Julia M. King, Ph.D., is Professor in the School of Communicative Disorders at the University of Wisconsin Stevens Point. David R. Beukelman, Ph.D., is Professor in the Department of Special Education and Communications Disorders, University of NebraskaLincoln. Augmentative and Alternative Communication Series Series Editors: David R. Beukelman, Ph.D., & Janice C. Light, Ph.D. Presenting research-based and practical information on advances in the AAC feld, this series examines the key issues experienced by the diverse range of individuals who use AAC. Developed for all afected by AAC issues, this series is dedicated to improving the lives of people who use AAC by bringing the research basis to the forefront of the feld. Includes case studies and quick-reference lists of communication strategies and supports S u p p o r t i n g
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B e u k e l m a n Series Editors: David R. Beukelman Janice C. Light Supporting Communication for Adults with Acute and Chronic Aphasia Also in the Augmentative and Alternative Communication Series: Transition Strategies for Adolescents and Young Adults Who Use AAC edited by David B. McNaughton, Ph.D., and David R. Beukelman, Ph.D. Autism Spectrum Disorders and AAC edited by Pat Mirenda, Ph.D., and Teresa Iacono, Ph.D. Practically Speaking: Language, Literacy, and Academic Development for Students with AAC Needs edited by Gloria Soto, Ph.D., and Carole Zangari, Ph.D., CCC-SLP Supporting Communication for Adults with Acute and Chronic Aphasia edited by Nina Simmons-Mackie, Ph.D., BC-ANCDS Southeastern Louisiana University Julia M. King, Ph.D. University of WisconsinStevens Point and David R. Beukelman, Ph.D. University of NebraskaLincoln Baltimore London Sydney Paul H. Brookes Publishing Co. Post Ofce Box 10624 Baltimore, Maryland 21285-0624 www.brookespublishing.com Copyright 2013 by Paul H. Brookes Publishing Co., Inc. All rights reserved. Paul H. Brookes Publishing Co. is a registered trademark of Paul H. Brookes Publishing Co., Inc. Typeset by Auburn Associates, Inc., Baltimore, Maryland. Manufactured in the United States of America by Sheridan Books, Inc., Chelsea, Michigan. Purchasers of Supporting Communication for Adults with Acute and Chronic Aphasia are granted permission to photocopy the forms on pages 70, 75, 196, 207, 285, 292293, and 301302 for clinical or education purposes. None of the items may be reproduced to generate revenue for any program or individual. Photocopies may only be made from an original book. Unauthorized use beyond this privilege is prosecutable under federal law. You will see the copyright protection notice at the bottom of each photocopiable page. Individuals in this book are either real people or composites based on the authors experiences. In most instances, identifying details have been changed to protect condentiality. Real names and stories used by permission. Selected clip art and stock photos 2013 Jupiterimages Corporation. The quoted material in pages 193200 is reprinted by permission from Bernstein-Ellis, E., & Elman, R. (2006). The Book Connection: A Life Participation Book Club for Individuals with Acquired Reading Impairment. Manual. Oakland, CA: Aphasia Center of California. Available at http://aphasiacenter.org Library of Congress Cataloging-in-Publication Data Supporting communication for adults with acute and chronic aphasia / [edited] by Nina Simmons-Mackie, Julia M. King, and David R. Beukelman. p. ; cm. (Augmentative and Alternative Communication (AAC) Series) Includes bibliographical references and index. ISBN 978-1-59857-268-1 (pbk.) ISBN 1-59857-268-7 (pbk.) I. Simmons-Mackie, Nina. II. King, Julia M. III. Beukelman, David R., 1943 IV. Series: AAC series. [DNLM: 1. Aphasiarehabilitation. 2. Communication. 3. Social Participation. 4. Social Support. WM 475.5] 616.8595206dc23 2012040696 British Library Cataloguing in Publication data are available from the British Library. 2017 2016 2015 2014 2013 10 9 8 7 6 5 4 3 2 1 v Contents Series Preface ...............................................................................................................vii Series Editors and Editorial Advisory Board .............................................................viii About the Editors .........................................................................................................ix About the Contributors ................................................................................................xi Foreword Audrey L. Holland ................................................................................xv Acknowledgments .................................................................................................... xvii 1 Supporting Communication: Improving the Experience of Living with Aphasia Julia M. King, Nina Simmons-Mackie, and David R. Beukelman .......................1 2 Frameworks for Managing Communication Support for People with Aphasia Nina Simmons-Mackie ......................................................................................... 11 3 Communication Supports Julia M. King ......................................................................................................... 51 4 Supporting Communication with Technology Julia M. King ......................................................................................................... 73 5 Staging Communication Supports Across the Health Care Continuum Nina Simmons-Mackie .........................................................................................99 6 Assess for Success: Evidence for Therapeutic Assessment Deborah Hersh, Linda Worrall, Robyn OHalloran, Kyla Brown, Brooke Grohn, and Amy D. Rodriguez ............................................................. 145 7 Integrating Communication Supports into Aphasia Intervention in Inpatient and Outpatient Rehabilitation Kristy S.E. Weissling and Judy Harvey .............................................................. 165 8 Integrating Communication Support into Aphasia Group Treatment Roberta J. Elman and Elizabeth Hoover ........................................................... 189 9 Communication Support for Everyday Life Situations Nina Simmons-Mackie and Julia M. King ......................................................... 221 vi Contents 10 Supporting Communication with Partner Training Jacqueline J. Hinckley, Natalie M. Douglas, Rachel A. Goff, and Erline V. Nakano ................................................................................................ 245 11 Ongoing Management and Maintaining Communication Support Nancy B. Alarcon ............................................................................................... 275 12 Communication Access, Rights, and Policies Jennifer Horner ..................................................................................................303 Appendix Image Capture and Management David R. Beukelman, Sarah Taylor, and Cara Ullman ....................... 325 Index .......................................................................................................................... 335 vii Series Preface The purpose of the Augmentative and Alternative Communication Series is to ad- dress advances in the eld as they relate to issues experienced across the life span. Each volume is research based and practical, providing up-to-date and ground- breaking information on recent social, medical, and technical developments. Each chapter is designed to be a detailed account of a specic issue. To help ensure a diverse examination of augmentative and alternative communication (AAC) issues, an editorial advisory board assists in selecting topics, volume editors, and authors. Prominent scholars, representing a range of perspectives, serve on the editorial board so that the most poignant advances in the study of AAC are sure to be explored. In the broadest sense, the concept of AAC is quite old. Gestural communica- tion and other types of body language have been widely addressed in the literature about communication for hundreds of years. Only recently, though, has the eld of AAC emerged as an academic discipline that incorporates graphic, auditory, and gestural modes of communicating. The series concentrates on achieving specic goals. Each volume details the empirical methods used to design AAC systems for both descriptive groups and for individuals. By tracking the advances in methods, current research, practice, and theory, we will also develop a broad and evolution- ary denition of this new discipline. Many reasons for establishing this series exist, but foremost has been the num- ber and diversity of the people who are affected by AAC issues. AAC consumers and their families, speech-language pathologists, occupational therapists, physical therapists, early childhood educators, general and special educators, school psychol- ogists, neurologists, and professionals in rehabilitative medicine and engineering all benet from research and advancements in the eld. Likewise, AAC needs are not delineated by specic age parameters; people of all ages who have developmen- tal and acquired disabilities rely on AAC. Appropriate interventions for individuals across a wide range of disabilities and levels of severity must be considered. Fundamentally, the eld of AAC is problem driven. We, the members of the editorial advisory board, and all professionals in the eld are dedicated to solving problems in order to improve the lives of people with disabilities. The inability to communicate effectively is devastating. As we chronicle the advances in the eld of AAC, we hope to systematically dismantle the barriers that prevent effective com- munication for all individuals. viii Series Editors David R. Beukelman, Ph.D. Professor Department of Special Education and Communication Disorders University of NebraskaLincoln 202F Barkley Memorial Center Post Ofce Box 830732 Lincoln, Nebraska 68583 Janice C. Light, Ph.D. Professor Department of Communication Sciences and Disorders The Pennsylvania State University 217 Moore Building University Park, Pennsylvania 16802 Editorial Advisory Board Michelle S. Bourgeois, Ph.D. Professor Department of Speech and Hearing Science The Ohio State University 1070 Carmack Road Columbus, Ohio 43210 MaryAnn Romski, Ph.D. Regents Professor of Communication, Psychology, Educational Psychology, and Special Education Associate Dean of Social and Behavioral Sciences Georgia State University 38 Peachtree Center Avenue Atlanta, Georgia 30303 Nancy C. Brady, Ph.D. Associate Professor Schiefelbusch Institute for Life Span Studies The University of Kansas 1000 Sunnyside Avenue Lawrence, Kansas 66045 Krista Wilkinson, Ph.D. Professor Department of Communication Sciences and Disorders The Pennsylvania State University 404H Ford Building University Park, Pennsylvania 16802 ix Nina Simmons-Mackie, Ph.D., BC-ANCDS, Professor and Scholar in Residence, Department of Communication Sciences and Disorders, Southeastern Louisiana University, 580 Northwoods Drive, Abita Springs, Louisiana 70420 Dr. Simmons-Mackie is Associate Investigator, Centre for Clinical Research Excellence in Aphasia Rehabilitation, and Honorary Professor at The University of Queensland, Brisbane, Australia. She is also Research Consultant at the Aphasia Institute in Toronto. Dr. Simmons-Mackie is a fellow of the American Speech- Language-Hearing Association and has received the honors of the Louisiana Speech-Language-Hearing Association; Veterans Administration Speech-Language Pathology Hall of Fame; and Outstanding Clinical Achievement Award from the American Speech, Language and Hearing Foundation. She is one of the found- ing members of Academy of Neurologic Communication Disorders and Sciences (ANCDS), is board certied by ANCDS, and has served as Secretary and President- Elect. She worked as a clinician, program manager, and department head in health care settings associated with adult rehabilitation and has many years of clinical, academic, and research experience in adult aphasia. She also has published numer- ous articles and chapters in the area of adult aphasia. Her interests include aphasia, qualitative research, and social model philosophies. Julia M. King, Ph.D., Professor, School of Communicative Disorders, University of WisconsinStevens Point, 1901 4th Avenue, Stevens Point, Wisconsin 54481 Dr. King has published articles and chapters on supporting communication and aug- mentative and alternative communication (AAC) intervention for adults with chronic aphasia and adults with primary progressive aphasia. Her research, clinical, and teaching interests are related to neurogenic communication impairments and AAC intervention. David R. Beukelman, Ph.D., Professor, Department of Special Education and Com munication Disorders, University of NebraskaLincoln, 202F Barkley Memorial Center, Post Ofce Box 830732, Lincoln, Nebraska 68583 Dr. Beukelman is a speech-language pathologist who specializes in augmentative and alternative communication and communication disorders associated with physi- cal and neurological conditions. He is the Barkley Professor of Communication Disorders at the University of NebraskaLincoln. He is a senior researcher in The Institute for Rehabilitation Science and Engineering at Madonna Rehabilitation Hospital in Lincoln, Nebraska, and is a partner in the Rehabilitation Engineering and Research Center for Communication Enhancement that is funded by the National About the Editors Institute on Disability and Rehabilitation Research. Dr. Beukelman is coauthor of Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs, Fourth Edition (with P. Mirenda; Paul H. Brookes Publishing Co., 2013); co-editor of Management of Motor Speech Disorders in Children and Adults, Third Edition (with K.M. Yorkston, E.A. Strand, & M. Hakel; PRO-ED, 2010); and co-editor of Augmentative Communication Strategies for Adults with Acute and Chronic Medical Conditions (with K.L. Garrett & K.M. Yorkston; Paul H. Brookes Publishing Co., 2007). x About the Editors xi About the Contributors Nancy B. Alarcon, M.S., CCC-SLP, BC-ANCDS, Senior Lecturer and Clinic Director, Department of Speech and Hearing Sciences, University of Washington, 1417 NE 42nd Street, Seattle, Washington 98105 Ms. Alarcon directs the outpatient teaching clinic at the University of Washington and supervises in the area of adult neurologic communication disorders. Her clinical work in this area with colleagues has focused on supported communication inter- vention in aphasia, the impact of group treatment in reducing social isolation, and long-term patient/family intervention in primary progressive aphasia. Kyla Brown, Ph.D., Postdoctoral Research Ofcer, Centre for Clinical Research Excellence in Aphasia Rehabilitation and Communication Disability Centre, The University of Queensland, St. Lucia, QLD 4072, Australia Dr. Brown is a postdoctoral research ofcer in the Centre for Clinical Research Excellence in Aphasia Rehabilitation and the Communication Disability Centre at The University of Queensland in Brisbane, Australia. Her research interests are in the area of acquired neurogenic communication disorders, with a particular focus on social or functional approaches to aphasia rehabilitation. Natalie M. Douglas, M.A., Doctoral Candidate and Speech-Language Pathologist, Department of Communication Sciences and Disorders, University of South Florida, 4202 East Fowler Avenue, PCD1017, Tampa, Florida 33620 Ms. Douglas is a doctoral candidate and speech-language pathologist working with adults in acute care and skilled nursing facilities. She studies the implementation of best practices for adults with cognitive-communicative disorders. Roberta J. Elman, Ph.D., F-CCC-SLP, BC-ANCDS, President and Founder, Aphasia Center of California, Oakland, California Dr. Elman is President and Founder of the Aphasia Center of California, a nonprot organization providing treatment, clinical research, and training and consultative services. She is an internationally invited speaker and author of numerous profes- sional publications, an American Speech-Language-Hearing Association Fellow, and a board certied member of the Academy of Neurologic Communication Disorders and Sciences. xii About the Contributors Rachel A. Goff, M.S., CCC-SLP, Speech-Language Pathologist and Doctoral Candidate, Department of Communication Sciences, University of South Florida, 4202 East Fowler Avenue, Tampa, Florida 33620 Ms. Goffs primary clinical and research interest is adult neurogenics. Her research explores predictors of the treatment outcomes for individual and group aphasia rehabilitation. Brooke Grohn, BSpPath (Honours), Centre for Clinical Research Excellence in Aphasia Rehabilitation and Communication Disability Centre, School of Health and Rehabilitation Sciences, The University of Queensland, St. Lucia, QLD 4072, Australia Ms. Grohn is completing her doctorate at The University of Queensland, Brisbane, Australia. Her research focuses on how people with aphasia live successfully during the rst year poststroke and how early intervention programs may be implemented to improve the quality of life of people with acquired neurogenic communication disorders. Judy Harvey, M.S., Speech-Language Pathologist, Department of Special Education and Communication Disorders, University of NebraskaLincoln, 350 Barkley Memorial Center, Post Ofce Box 830731, Lincoln, Nebraska 68583 Ms. Harvey is a doctoral candidate in communication disorders at the University of NebraskaLincoln. Her research interests include intervention for individuals with acquired brain injury. Deborah Hersh, Ph.D., Associate Professor in Speech Pathology, School of Psychology and Social Science, Edith Cowan University, 270 Joondalup Drive, Joondalup, Western Australia 6027, Australia Dr. Hersh has more than 20 years of clinical and research experience in speech- language pathology and has worked in the United Kingdom and Australia. She has presented and published in the areas of discharge practice, professionalclient rela- tionships, clinical ethics, group work for chronic aphasia, and goal setting in therapy and is a Fellow of Speech Pathology Australia. Jacqueline J. Hinckley, Ph.D., CCC-SLP, Associate Professor Emeritus, University of South Florida, 4202 East Fowler Avenue, PCD1017, Tampa, Florida 33620 Dr. Hinckley is a clinical researcher, trainer, and clinician with more than 25 years of experience in neurogenic communication disorders. She is interested in develop- ing tools, techniques, and processes that improve the provision of therapy services, and her current work focuses on the implementation of evidence-based practices in clinical settings. About the Contributors xiii Elizabeth Hoover, M.S., CCC-SLP, BC-ANCDS(A), Clinical Assistant Professor, Department of Speech and Hearing Sciences, Boston University, 635 Commonwealth Avenue, Boston, Massachusetts 02215 Ms. Hoover is Clinical Director of the Aphasia Resource Center. She holds adult- focused board certication from the Academy of Neurogenic Communication Disorders and Sciences. Jennifer Horner, Ph.D., J.D., CCC-SLP, Professor and Associate Dean for Research and Graduate Studies, College of Health Sciences and Professions, Ohio University, Grover Center W380, Athens, Ohio 45701 Dr. Horners scholarship focuses on law and ethics. She holds the CCC-SLP from the American Speech-Language-Hearing Association and is board certied by the Academy of Neurologic Communication Disorders and Sciences. Erline V. Nakano, M.S., CCC-SLP, Clinical Speech-Language Pathologist, Department of Communication Sciences and Disorders, University of South Florida, 4202 East Fowler Avenue, PCD1017, Tampa, Florida 33620 Ms. Nakano is a clinical speech-language pathologist who works in the area of cog- nitive rehabilitation of adults with traumatic brain injury. She is pursuing her Ph.D. in adult neurogenic disorders at the University of South Florida. Robyn OHalloran, Ph.D., Postdoctoral Research Fellow, Centre for Clinical Research Excellence in Aphasia Rehabilitation, La Trobe University, Bundoora, Victoria 3086, Australia Dr. OHalloran worked for more than 10 years as a speech pathologist with adults with acquired neurogenic communication disorders before completing a masters degree and then a Ph.D. in speech pathology at The University of Queensland. She is a lecturer in the Department of Human Communication Sciences at La Trobe University, Victoria. Amy D. Rodriguez, Ph.D., Postdoctoral Fellow, Centre for Clinical Research Excellence in Aphasia Rehabilitation, The University of Queensland, St. Lucia, QLD 4072, Australia Dr. Rodriguez is a speech-language pathologist and rehabilitation scientist. Her re- search focuses on the development of novel treatment approaches that incorporate principles of neuroplasticity to promote language recovery in aphasia. xiv About the Contributors Sarah Taylor, B.S., Speech-Language Pathology Graduate Student, Department of Special Education and Communication Disorders, University of NebraskaLincoln, 318 Barkley Memorial Center, Lincoln, Nebraska 68583 Ms. Taylor received her B.S. degree from University of NebraskaLincoln and is cur- rently completing her M.S. degree from the same university. Her future plans include starting a career in the medical setting and pursuing a doctoral degree. Cara Ullman, M.A., Research Technology Specialist/Research Coordinator, Uni ver- sity of NebraskaLincoln, 114 Barkley Memorial Center, Lincoln, Nebraska 68583 Ms. Ullman has worked in research for more than 12 years in both scientic and ap- plied research programs. Her research interests are speech science and disordered motor speech. Kristy S.E. Weissling, SLP.D., CCC-SLP, Assistant Professor of Practice, Department of Special Education and Communication Disorders, University of NebraskaLincoln, 277 Barkley Memorial Center, Post Ofce Box 830731, Lincoln, Nebraska 68583 Dr. Weissling is a clinical supervisor at the Barkley Speech-Language and Hearing Clinic at the University of NebraskaLincoln. Her research and teaching interests include aphasia, cognitive-communication disorders, and augmentative and alterna- tive communication. Linda Worrall, BSpThy, Ph.D., Professor, School of Health and Rehabilitation Sciences, The University of Queensland, St. Lucia, QLD 4072, Australia Dr. Worrall is Director of the Centre of Clinical Research Excellence in Aphasia Rehabilitation and Codirector of the Communication Disability Centre at The University of Queensland in Australia. She is also a Fellow of Speech Pathology Australia and Founder of the Australian Aphasia Association. xv About 20 years ago (late 1990s), modest warfare began regarding approaches to the treatment of aphasia. The rst skirmishes were rather benign, and many of the par- ticipants were unwilling to declare that they were truly on one side or the other. But in 2000, a group of like-minded, visionary clinicians made the insurgent action quite evident through the proclamation titled Life Participation Approach to Aphasia: A Statement of Values for the Future (LPAA Project Group, 2000). This document, known widely in the aphasia world as the LPAA, was a call to arms. In true revolutionary spirit, the LPAA group spoke as a whole, although two of them (Simmons-Mackie and Elman) are prominent in big ways in this book and most of the other participants in that group appear frequently in its reference lists. The LPAA statement awakened the aphasia treatment community to the need for an in- ward look at what clinicians were doing that actually affected the everyday lives of individuals who were living with aphasia and their families. And then, an open, but mostly gentle, conict was on between those whose convictions lay with undeni- able contributions of traditional, impairment-focused, medically driven treatment approaches and those whose convictions were situated in what differences our work made in everyday lives. (And never mind the changes in performance curves or test data that are so crucial to our professions status in the real world of reimbursement for health care services.) Much has happened since the LPAA statement of 2000. Occasionally, this recent history was bitter and, at times, acrimonious. As a person who tried to remain neu- tral, or at least to recognize the merits in both approaches, I often felt like an em- bodiment of Ogden Nashs old couplet that tolerance is nothing but a rubber spine. But since then, times have changed. An increasingly important urging came from the World Health Organization (WHO), beginning in 2001. Through its International Classication of Functioning, Disability and Health (ICF), WHO has consistently supported the fact that the impairment of aphasia (and many other disorders) has grave personal and societal repercussions that demand attention (WHO, 2001). A lovely testament to the growing awareness is the book Aphasia Treatment: The Impairment and its Consequences (Martin, Thompson, & Worrall, 2007), in which in- dividual proponents of those two viewpoints sought common ground. And, recently, following the 2012 International Aphasia Rehabilitation Conference in Australia, its con- vener, Miranda Rose, wrote me to the effect that the skirmish between the Impairment People and the Consequences People appears to have ended peacefully, with both sides recognizing their mutual interdependence in providing the best treatment. And now there is this wonderful book. It is the perfect companion piece to the many more traditional textbooks on aphasia and aphasia rehabilitation. It will be an eye-opener to students whose formal training in aphasia stems mostly from those other texts. This book is also a must-read wake-up call to clinicians who have some- how been shielded from what has been happening in aphasia treatment. I hope that it will demand attention from those who make health care decisions, as well. Foreword xvi Foreword Kagan and Simmons-Mackie (2007) developed a model for the treatment of aphasia called Aphasia: Framework for Outcome Measurement (A-FROM), a practi- cal approach building on the ICF. A-FROM is thoroughly described in this book and takes into account the various domains that dene living with aphasia, in fuller ways that can be put forth in a brief foreword. One of Kagan and Simmons-Mackies core concepts is that excellent treatment for aphasia should be tackled by beginning at the end. That is, treatment should begin by dening what all of us (clinicians, invested others, people with aphasia) jointly would like to see by the end of ideal treatment, given the restrictions implicit in the disorder itself and the environment in which it is situated. This book is a roadmap for that journey. Among the books many strengths is its comprehensiveness. It covers the ter- rain from theoretical concerns to rights and policies. It argues for supporting com- munication across the continuum of care, suggesting how it should be done, and providing many trenchant and tested examples. Not only are individuals with apha- sia included, but so are caregivers. Finally, those who work in venues that provide support, such as aphasia groups and centers, will nd a rich source of ideas here. It is an honor to have been asked to write this foreword. Because I read the book before its publication, (i.e., in electronic form), I cannot wait for it to appear in actual book form. Then, I plan to tuck it under my pillow and in that way absorb all of the marvelous information it contains. Audrey L. Holland, Ph.D. Regents Professor Emerita University of Arizona, Tucson REFERENCES Kagan, A., & Simmons-Mackie, N. (2007). Beginning with the end: Outcome driven assess- ment and intervention with life participation in mind. Topics in Language Disorders, 27, 309317. LPAA Project Group. (2000). Life participation approach to aphasia: Looking to the future. ASHA Leader, 5, 46. Martin, N., Thompson, C., & Worrall, L. (2007). Aphasia and its consequences. San Diego, CA: Plural. World Health Organization (WHO). (2001). International classication of functioning, dis- ability and health (ICF). Geneva, Switzerland: Author. xvii Acknowledgments We dedicate this book to those individuals with aphasia and their families who have collaborated with us through the years as, together, we have learned to com- municate in ways that support their participation in areas of life that are important to them. In addition, we thank the authors for their ongoing contributions to the eld of aphasia. Both editors and authors receive the support of our agencies, universities, and medical centers to provide communication services to those with unmet communi- cation needs due to aphasia. We acknowledge the commitment that these organiza- tions have shown and continue to show. Finally, we appreciate the support of Paul H. Brookes Publishing Co. For this book, we thank Astrid Zuckerman, Susan Hills, and Janet Wehner. 1 Supporting Communication Improving the Experience of Living with Aphasia Julia M. King, Nina Simmons-Mackie, and David R. Beukelman 1 We begin this book by considering what it means to live with aphasia. From the perspective of the person with aphasia, aphasia can be a sudden and frightening change that engenders daily struggles to communicate, perform activities, maintain relationships, and participate in favored situations and events. From the perspective of family members, aphasia is often an incomprehensible change in their loved one that affects their relationships, day-to-day activities, roles, and even sense of well- being. From the perspective of the speech-language pathologist (SLP), aphasia can be a challenging and complex acquired disorder of language that calls for profes- sional knowledge, skill, and compassion. The SLP, the family, and the person with aphasia join together in a journey de- signed to improve communication. The ultimate goal is for all concerned to nd a way to foster a successful life with aphasia (Boles, 2006; Cruice, Worrall, & Hickson, 2006; Hinckley, 2006; Holland, 2006). No one welcomes the onset of aphasia; how- ever, the experience of life with aphasia can be enhanced with sufcient attention to meaningful participation and support. Establishing supports for communication and participation from the onset of aphasia through the long term can signicantly improve the experience of living with aphasia. A Day in the Life of Elsie Baker Hi. My name is Elsie Baker. Im 74 years old, and I live alone in an inde- pendent living facility. Here is a little bit about a typical day in my life (as interpreted by my daughtershe is my ghost writer, but the message is mine). 2 King, Simmons-Mackie, and Beukelman I wake up early and enjoy my usual toast and coffee while watching the news on TV. Today they are reporting on the Olympics. Such impressive young people! I especially like when there are pictures and videos to match the story. That really helps the stories come alive for me. My phone pings. Its a message from Teddy, my grandson: Miss you, Mims. Such a sweet boy. I need to e-mail him today. Oh, and look! Heres a photo of Craig and Holly with the caption Fun, fun, fun! The picture is taken on a cruise ship. I ip through the photos they have been sending from their cruise vacation in the Carib- bean. Its great to be able to keep in touch this way. Lets see what I have in my day planner for today. Oh dear! Theres my book club sticker that shows I have book club at 2:00 p.m., and I havent nished my chapters yet. And the red heart stickertime for Poochie to get his heartworm medicine. I babble to Poochie in a high-pitched voice (he loves that!), and I feed him his pill. I sit at my computer and pull up my e-mailI use a cheat sheet to help me because all this technology is a bit daunting to an old ladyold, but young at heart, of course. I write an e-mail to Teddy: Hi, Teddy. Miss you. School? Love you, XO Mims. I have an e-mail from Vergie, my best friend who moved to California. I fol- low my cheat sheet, and I can hear the e-mail spoken aloud as well as read the text. Amazing! My electronic pill box on the kitchen counter is beeping. Time to take my medicine. My daughter Holly comes and organizes all my pills by day and time for a whole week. My goodness, she must think Im old as the hills! Im sure I could remember without this fancy machine, but we have fun when she visits, and I dont want to disappoint her. Time to prepare for book club. We are reading A Walk in the Woods by Bill Bry- son. Its very funny, and I have really been enjoying it. At our club meeting we laugh ourselves sick! I get my book club materials out and go to work at the kitchen table. Oops. Forgot to arrange for my taxi. When I go to the phone and hit the auto- dial on my landline, they answer immediately: Hello, Mrs. Baker. How you doin today? Need your ride to the center? I say, Yes. Well pick you up at 1:15 today. Yes. See you at 1:15 today. Thank you. All set. After reading my chapters and reviewing the book club questions, I dress and go downstairs to the dining room for lunch. I wave at my friends Marge and Clark, and they signal for me to join them. The waitress shows the days specials; the pic- ture of the chicken stew looks delicious, so I choose that. Marge asks whats new, and I show her the smartphone picture of Craig and Holly on the ship. Marge goes on and on about how precious they are, and I agree totally! Clark is more taken with the ship, and I pull up a few other photos showing the cabins and dining room. I spend a bit too long at lunch, and then I feel rushed trying to get my things together to meet the taxi cab. But I know the driver, and he is very patient with me. I get to the club meeting on time, and, as usual, it is a hoot! After the meeting, the taxi is waiting, and by the time I am nally back in my apartment, Im exhausted. My phone pings. There is a picture of me with my big mouth open in a huge laugh; the caption reads, Funny. I laugh out loud. Albert, Supporting Communication 3 one of the book club members, has snapped this photo of me earlier today. I text him: Noyou funny. The landline rings. I dont recognize the caller ID. I answer: Hello. Is this Mrs. Baker? Yes. A brisk voice begins to speak quickly: This is Dr. Philberts ofce. We need to arrange an appointment for next week. Dr. Sun wants Dr. Philbert to have a look at that mole. We might need to take a biopsy. We have Monday at 4:15 or Wednesday at 9:45. Do either of these times work? I am overwhelmed with words. I have no idea who this is or what they are talking about. I struggle: a a a Noaa MeUh. I grab my message recorder next to the phone, press the speaker button on my phone, and hit the play button on the recorder. Hollys voice says, Please be patient. I had a stroke and have aphasia. I have trouble understanding and talking. Please speak slowly and ask me yes or no questions.
Elsie Baker lives with aphasia. Although her life changed after the onset of aphasia and she still encounters difculties with communication, integration of com- munication supports that facilitate her participation in everyday activities allows Elsie to live independently, enjoy life, and keep in touch with family and friends. Methods of supporting communication that might be inferred from Elsies story are described in detail throughout this book. Such methods provide hope for a new, though different, way of living life with aphasia. Sharing the Decision My wife and I have always made decisions together that have affected our family. I never realized how important that collaboration was until we experi- enced a medical crisis. One morning, I found my wife lying on the oor unable to speak. She was rushed to our local hospital, where I was told that she had a stroke, probably with aphasia. I was presented with the choice of two different stroke centers in our region. I made the decisions because I did not know how to include my wife in the decision-making process. After a few days, her health stabilized, and we had to decide where she would go for inpatient rehabilitation. I found myself talking to the doctors about our options; my wife appeared to listen, but she was clearly not part of the discussion. A few days earlier, I had been taught how to use a written choice strategy when communicating with her. I would slowly write down the important words of a question or statement and then write a word or phrase to rep- resent the optional answers that she might wish to communicate. So, that afternoon, I sat on the edge of her bed and wrote down the choices that had been presented to us by the medical staff. On a separate page, I wrote the names of the rehabilita- tion centers and then, with a word or two, listed positives and negatives associated with each center as I spoke the messages. My wife nodded as I wrote and spoke the choices, and then she pointed to the written words and phrases with her left, nonparalyzed, hand. I slowly talked about our options as she pointed. In time, she turned back to the initial page, and I read the names of the rehabilitation centers as I pointed to each name. She looked thoughtfully at me and then looked back at the notebook and tapped several times on what appeared to be her rst choice. I asked 4 King, Simmons-Mackie, and Beukelman a conrming question, and she pointed to her rst choice again. I felt that she had truly been part of the decision-making process. Research suggests that people with aphasia want to be able to participate in communication not only about their basic needs but also about their opinions, their feelings, and their ideas; they also want information about their diagnosis and avail- able services (Worrall et al., 2011). However, people with aphasia often describe early experiences of feeling excluded from communication with family, friends, and health care personnel. They often report that they have not been included in important decisions or did not understand information about diagnosis, prognosis, or medical procedures. Appropriate communication support can help people with aphasia participate in important decisions, as illustrated in this story. The husband supported communication with his wife, an individual with aphasia, by using a strategy that included her in making an important care decision during the acute phase of recovery. My Aha Moment My name is Lynn. Let me tell you a story about an experience I had one day while working as an SLP. I was walking down the hallway at the rehabilita- tion hospital and stopped to visit with Mr. Smith and Mrs. Green, who had just returned from a bowling outing. When I stopped, I discovered that Mr. Smith and Mrs. Green were showing another therapist a score sheet from the bowling alley to describe how they each had gotten a strike and a spare during the game. Mr. Smith and Mrs. Green demonstrated the special arm movement they each had used that had resulted in such a great performance. Everyone was laughing and enjoying the story; the message was very clear. I noticed the time and let Mr. Smith know it was time for his speech-language therapy session. He said bye to the other people and walked with me to my ofce. As we walked through the hallway, I noticed how he made eye contact with each person we passed and either nodded or said, Hello. He appeared to be in a good mood. We entered my ofce; he took a seat at the end of the table and let out a loud sigh. His smile was gone; there was no expression on his face. Are you ready to get started? I asked. Okay, he replied. I began to ask him to name words pictured in a book on my table. He struggled and began to show frustration. I couldnt help wondering why, a few minutes earlier, he had been laughing and enjoying the interaction even though he had not used specic words to tell the story, but, during the therapy session, he was disengaged and uninter- ested. As I wondered what had happened and why the abrupt change might have occurred, I asked Mr. Smith to tell me more about the bowling game. He looked at me as if to say, Are you sure? Arent we supposed to be doing language drill work? I answered his question as it dawned on me that the stimuli I chose to use had an impact on his performanceWe can practice words you might use during your next bowling game or words you want to say to your family. This story reveals how an SLP realized the importance of making therapy tasks relevant and motivating. She recognized the need to support communication by us- Supporting Communication 5 ing personally relevant stimuli during an intervention session that focused on restor- ing language. By supporting communication, Mr. Smith could practice meaningful words that could be used during authentic communication exchanges in the future. Also, Mr. Smith could more readily recognize the value and purpose of language therapy because the tasks were made relevant to his daily life. Giving the News There are a variety of social gathering places in our community. Some people meet at barber shops, coffee houses, and cafes. My friend prefers the local convenience store. In the morning, he waits for the newspaper to be delivered. With his good hand, he cuts pictures, headlines, and stories out of newspapers and magazines. He puts them in envelopes inside of a bag that he carries over his shoulder. His SLP calls them remnants. In the morning, my friend walks a couple of blocks from his home to the store and has a cup of coffee. He sits at his favorite spot by the window and puts his newest and most popular remnants on the table. When friends and acquaintances come for their coffee, they wave and say hi but sometimes they stop for a while and ask if he has any news about topics such as the arena project, the football team, or the robbery at a local church. He digs through his stuff and shows them what he has. He also carries a communication book and a notepad in his bag to support his limited spoken language and writing. After he has nished conversing with friends, he asks them to sign his visitor log so that he can show his wife who visited with him that day. At home, his wife asks what topic his visi- tors were most interested in that day to support continued conversation between the two of them. My friend and his wife are thinking about getting an iPad with the USA Today newspaper application (app). This app provides multiple news stories, each with an accompanying picture. The limitation is that the stories are national, not local stories. However, his local newspaper is providing more and more elec- tronic access to article summaries with pictures. Actually, he teases his friends at the convenience store that more and more of them are getting mobile technology, such as smartphones and tablet computers, so that they can have pictures to help them communicate. If he decides to get his own mobile technology, I plan to contact the local paper about including relevant pictures in even more of its electronic article summaries. Communication supports, such as remnants and apps, are options that some people with aphasia nd helpful for participating in desired activities with friends, such as talking about local events. As depicted in the case study, new communica- tion supports are continually explored and considered as changes occur (e.g., better pictures on a local newspaper web site). In other words, integrating appropriate and successful communication supports is a dynamic process. What Does This Mean? I am a 47-year-old mother of two teenagers and was just told that my father has primary progressive aphasia (PPA). My siblings and I knew something was 6 King, Simmons-Mackie, and Beukelman going on with Dad because he was having difculty thinking of the words he wanted to say and struggled with understanding us in noisy situations. We recently noticed that his spelling was getting worse. My siblings and I took turns taking Dad to doc- tors. After 9 months and many appointments, we received the diagnosis of PPA from a neurologist who specializes in degenerative conditions. Before we left the appointment, the doctors assistant suggested that we consult with an SLP in our hometown. I had no idea where to start. I read about the diagnosis of PPA on the Internet, but I still had so many questions about what this might mean for my dads future as well as mine: Does he have dementia? Will he forget me and the kids? Will I need to stop working and care for my dad in addition to my responsibilities with my own children? Can I handle him in my home? Will he need to live in a nursing home? I called my good friend Jane, who is an SLP in the local school district, to see whether she could help me nd some answers to my questions. Jane suggested that I call local hospitals and outpatient clinics to see whether any of the SLPs had experience working with people with PPA. I found an experienced outpatient SLP and scheduled an evaluation appointment after getting a referral from my dads primary care physician. Before the appointment, the SLP called me and asked me some questions about my dad. She wanted to know what questions I had, how my dad was currently communicating (and how that was different from in the past), what he liked to talk about, where he communicated, how he communicated (e.g., tele- phone, cell phone, e-mail), and who his communication partners were. During the evaluation session, the SLP answered the questions that my dad and I had about the diagnosis related to changes in communication. She also provided us with resources to learn more about aphasia. She explained that her intervention approach was to support communication so that Dad could participate in the activities that are important to him now and over time. We developed a plan for periodic follow-up as we discussed the possibility that other aspects of communication might need to be supported in the future as the PPA progresses. I think the plan for my dad makes sense because it addresses him as a person. I know my dad has a lot to deal with now that we know what is happening medi- cally, but, since the evaluation session with the SLP, he has looked happier and has started using some of the support strategies. He is communicating with his grand- children via e-mail again, he answers the phone when I call his home, and he even attended his monthly Optimist Club luncheon after missing the past 6 months. He is scheduled to meet with the SLP twice a month to develop and learn new strategies, revise current strategies, and ensure that all his communication needs are being addressed. Either my brother or I attend the speech-language intervention sessions with Dad to learn how we can best support communication. So far, we have learned strategies for how to ask better questions, listen and be patient, and use objects in the environment to support our messages. We also discuss any new areas of need with the SLP to problem-solve how best to support communication with Dad. My teenagers have even noticed a difference when they visit my dad to make sure the computer is working properly, take him grocery shopping, and work on the project car in the garage. They say that he is willing to go more places and is inter- acting with them more. Dad even asked the kids if he could take them out to lunch before shopping this week. He had difculty thinking of the name of the restaurant Supporting Communication 7 he wanted to go to, so the kids pulled out the phone book, and Dad pointed to his choice in the restaurant section of the yellow pages. Two months ago I asked, What does this mean? I now have answers to that question. A diagnosis of PPA means that my dad has aphasia that will increase in severity over time. More important, I learned what it means for my dad and my fam- ily. I now know how we can support him to stay engaged in his life for as long as pos- sible so that he can continue to be a dad, a grandpa, and an optimist. Supporting communication involves meeting an individuals communication needs at the present time as well as planning for the future. For people with PPA, the outpatient SLP is often the rst rehabilitation professional they meet because they are not hospitalized or in need of therapy from occupational and/or physical therapy as in the case of aphasia from a stroke. For this man with PPA, the initial communication supports developed to facilitate participation in desired activities included education, partner training, and the creation of individualized communi- cation strategies and techniques. As with all degenerative conditions, a mechanism must be in place for long-term follow-up to adjust supports and meet future needs. No Supports for Hilda I met Hilda about 6 years after her stroke. She demonstrated almost no functional speech and was facing a transition from living at home to an assisted living facility. Hildas husband and adult daughter had served as effective, well- trained listeners for her. However, with the death of her husband, living at home was no longer an option for Hilda. To support her communication in the assisted living facility, I recommended that she use communication support strategies with which she could tell stories, answer predictable questions, communicate about her care needs, ask questions that would encourage interaction with others, and participate in recreational activities within the facility. Hilda showed considerable interest in these communication strategies, but after about a month, her daughter asked to talk with me. She indicated that she was very frustrated with this communication approach because she felt that I had given up on therapy to recover functional speech. I pointed out that Hilda was almost 7 years poststroke, that her limited recovery did not bode well for future recovery, and that the upcoming change in residence really forced us to take a new approach involving extensive communica- tion support. At that point, Hildas daughter, who had power of attorney, withdrew her mother from my intervention and reinitiated therapy focused on the recovery of spoken language with another therapist. Several years later, the daughter contacted me to indicate that she had made a mistake in her earlier decision but that it was very hard to give up on the recovery of spoken language after all the years of focus- ing on that goal. People with aphasia and their family members would like communication to return to preaphasia levelsfor the loved one to be able to talk again and to com- municate using spoken language. It is difcult to predict the extent of language recovery during the early phases of aphasia intervention; however, working on 8 King, Simmons-Mackie, and Beukelman communication support can be the key to promoting social participation and suc- cessful outcomes. This story highlights the need to assist people with aphasia and their family members to prepare themselves to incorporate communication supports throughout the phases of recovery so that they will be ready to use these strategies to supplement spoken language when the need arises. DEFINING APHASIA Aphasia is dened in textbooks as an acquired language disorder associated with damage to the brain (e.g., Davis, 2007; see Box 1.1). Most typically, this damage oc- curs in the language regions of the left cerebral hemisphere. This damage can occur suddenly from a stroke or brain injury or gradually from a degenerative condition, such as PPA. However, for people with aphasia, the experience of this language disorder goes far beyond textbook denitions and statistics. Aphasia can be a life- shattering experience. For example, one man with aphasia described his experience as one in which everything has been taken away from me (Shadden, Hagstrom, & Koski, 2008, p. 140). With the onset of aphasia, people not only experience problems communicating but also experience a host of secondary consequences that can signicantly diminish quality of life. For example, loss of jobs, inability to participate in familiar events, or social isolation is sometimes reported after the onset of aphasia. No two people experience aphasia the same way. Life experiences, commu- nication styles, personalities, and support networks are some of the factors that inuence the way aphasia affects each person. Understanding how life is affected BOX 1.1 Types of Aphasia Aphasia affects both expressive and receptive communication including speaking, understanding what others say, writing, reading, and symbolic gesturing. The disruption of language is not attributable to a more general intellectual or cognitive decit (e.g., dementia), to sensory impairment (e.g., hearing loss), or to disruption of the motor system required for speaking (e.g., dysarthria) (Darley, 1982). The severity and pattern of language impairment varies depending on the extent and location of brain damage. Aphasia can span a range of severity levels from individuals who are totally unable to speak, comprehend the speech of others, read, or write, to those who experience mild difculties nding the right word during conversation. The most reported decit experienced by people with aphasia is difculty saying what they want to say; however, the constellation of linguistic impairments varies across individuals. The classical taxonomy divides the aphasias into uent and nonuent aphasia based on symptoms exhibited. Nonuent aphasia is characterized by relatively short, incomplete, or telegraphic utterances consisting largely of content words (e.g., nouns, verbs); the utterances often lack syntactic form. Fluent aphasia is characterized by production of more lengthy utterances that either contain word or sound substitutions (paraphasias) or attempts to search for a word. Supporting Communication 9 by aphasia requires looking at the whole person. This view includes determining how participation in desired activities has been or might be affected by the language impairment. The focus of this book is on supporting the person with aphasia in all aspects of communication from the day of onset through chronic stages. The inter- vention approach detailed here addresses the unique aspects of each person with aphasia as they move from one intervention setting to another as well as beyond intervention. DEFINING COMMUNICATION SUPPORT The focus of this book is on communication support for people with aphasia. Communication support is dened broadly as anything that improves access to or participation in communication, events, or activities. Support includes strategies, materials, or resources that are used by the person with aphasia or by others who communicate with people with aphasia. It involves modications in the environ- ment around the person with aphasia or modications to activities in which people engage. It also includes supportive attitudes that foster communicative participation (see Box 1.2). Finally, support includes policies and practices of agencies and institu- tions that foster communicative success. The need for communication support is expressed by Monica Clarke, the wife of a man with aphasia. She wrote about developing a method of communicating with her husband: John and I started a project called Pictures Speak, teaching others how to support com- munication if their work involves people with communication difculties. We noticed that people in wheelchairs are given wheelchair ramps to use, but we also noticed that hardly ever is someone with a communication difculty given a communication ramp. This is unfair and unequal. (Clarke & Clarke, 2003, p. 123) She went on to suggest, Those of us without communication difculties have a DUTY to learn to communicate effectively with those who have difculty using words (Clarke & Clarke, 2003, p. 126). Callie, a young woman with aphasia, de- scribed the chaos of trying to give her husband a phone message while her two young children played loudly and the television blared: I lose it. Cant talk, cant hearcry, cry, cry (personal communication). When an SLP taught Callie and her BOX 1.2 Denition of Participation Participation refers to involvement in a life situation (World Health Organization, 2001). Aphasia can present barriers to participation that can be eliminated with communication supports. A focus on participation is not new. Colleagues in other rehabilitation elds also recognize the value and benet of focusing on participation when developing an intervention program. Baum (2011), an occupational therapist, stated that a focus on participation challenges us to nd ways for people to do the things that they need to do while they recover. Participation itself may foster this recovery because it brings focus to motivation, competency, and self-efcacy (2011, p. 170). 10 King, Simmons-Mackie, and Beukelman husband several support strategies for more effectively managing such everyday communication activities, Callie reported that her communication improved and her condence was bolstered. The experiences of these two individuals and the prior stories provide an introduction to the goal of this book: to promote the integration of communication support into the lives of people with aphasia from acute onset through chronic stages of aphasia. CONCLUSION Aphasia is one of the least understood communication disorders by the general public. People with aphasia report being treated as if they have an intellectual dis- ability such as dementia or a hearing loss as people shout at them. Clinicians have historically viewed aphasia as a language impairment without considering the effect on the persons participation and quality of life postonset. This book outlines and discusses an approach to aphasia intervention that supports communication from the onset. We begin by providing a rationale for this approach, explaining methods that support communication, with considerations for different stages of intervention as well as postintervention. Specic types of support related to aphasia groups and partner training are discussed in separate chapters. Finally, issues related to aphasia advocacy and legal rights are presented. REFERENCES Baum, C.M. (2011). Fulfulling the promise: Supporting participation in daily life. Archives of Physical Medicine and Rehabilitation, 92, 169175. Boles, L. (2006). Success stories in aphasia. Topics in Stroke Rehabilitation, 13(1), 3743. Clarke, M., & Clarke, J. (2003). Directions without words. In S. Parr, J. Duchan, & C. Pound (Eds.), Aphasia inside out: Reections on communication disability (pp. 117126). Berk- shire, England: Open University Press. Cruice, M., Worrall, L., & Hickson, L. (2006). Perspectives of quality of life by people with aphasia and their family: Suggestions for successful living. Topics in Stroke Rehabilitation, 13(1), 1424. Darley, F. (1982). Aphasia. Philadelphia, PA: W.B. Saunders. Davis, G.A. (2007). Aphasiology: Disorders and clinical practice (2nd ed.). Boston: Pearson. Hinckley, J.J. (2006). Finding messages in bottles: Living successfully with stroke and apha- sia. Topics in Stroke Rehabilitation, 13(1), 25. Holland, A. (2006). Living successfully with aphasia: Three variations on the theme. Topics in Stroke Rehabilitation, 13(1), 44. Shadden, B.B., Hagstrom, F., & Koski, P. (2008). Neurogenic communication disorders: Life stories and the narrative self. San Diego: Plural Publishing. World Health Organization. (2001). International classication of functioning, disability and health (ICF). Geneva: Author. Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2011). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25, 309322.