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Life Participation Approach to Aphasia: A Statement of Values for the Future

2000; American Speech–Language–Hearing Association; Volume: 5; Issue: 3 Linguagem: Inglês

10.1044/leader.ftr.05032000.4

1085-9586

Roberta Chapey, Judith Felson Duchan, Roberta J. Elman, Linda Garcia, Aura Kagan, Jon G. Lyon, Nina Simmons Mackie,

Assistive Technology in Communication and Mobility

You have accessThe ASHA LeaderFeature1 Feb 2000Life Participation Approach to Aphasia: A Statement of Values for the Future Roberta Chapey, Judith F. Duchan, Roberta J. Elman, Linda J. Garcia, Aura Kagan, Jon G. Lyon, and Nina Simmons Mackie Roberta Chapey Google Scholar , Judith F. Duchan Google Scholar , Roberta J. Elman Google Scholar , Linda J. Garcia Google Scholar , Aura Kagan Google Scholar , Jon G. Lyon Google Scholar and Nina Simmons Mackie Google Scholar https://doi.org/10.1044/leader.FTR.05032000.4 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In by the LPAA Project Group Unprecedented changes are occurring in the way treatment for aphasia is viewed—and reimbursed. These changes, resulting from both internal and external pressures, are influencing how speech-language pathologists (SLPs) carry out their jobs. Internal influences include a growing interest in treatments that produce meaningful real life outcomes leading to enhanced quality of life. Externally, we are influenced by disability rights activists encouraging adjustments in philosophy and treatment, and by consumers frustrated by unmet needs and unfulfilled goals. Most recently, a strong external influence is emanating from the curtailment of funding for our work that has caused a significant reduction in available services to people affected by aphasia. To accommodate these varied influences on service delivery, it is important to take a proactive stance. We therefore propose a philosophy of service delivery that meets the needs of people affected by aphasia and confronts the pressures from our profession, providers, and funding sources. Our statement of values has been guided by the ideas and work of SLPs as well as by individuals in psychology, sociology, and medicine. We intend neither to prescribe exact methods for achieving specific outcomes, nor to provide a quick fix to the challenges facing our profession. Rather, we offer a statement of values and ideas relevant to assessment, intervention, policy making, advocacy, and research that we hope will stimulate discussion related to restructuring of services and lead to innovative clinical methods for supporting those affected by aphasia. Defining the Approach The “Life Participation Approach to Aphasia” (LPAA) is a consumer-driven service-delivery approach that supports individuals with aphasia and others affected by it in achieving their immediate and longer term life goals (note that “approach” refers here to a general philosophy and model of service delivery, rather than to a specific clinical approach). LPAA calls for a broadening and refocusing of clinical practice and research on the consequences of aphasia. It focuses on re-engagement in life, beginning with initial assessment and intervention, and continuing, after hospital discharge, until the consumer no longer elects to have communication support. LPAA places the life concerns of those affected by aphasia at the center of all decision making. It empowers the consumer to select and participate in the recovery process and to collaborate on the design of interventions that aim for a more rapid return to active life. These interventions thus have the potential to reduce the consequences of disease and injury that contribute to long-term health costs. The Essence of LPAA We encourage clinicians and researchers to focus on the real-life goals of people affected by aphasia. For example, in the initial stages following a cerebrovascular accident, a goal may be to establish effective communication with the surrounding nursing staff and physicians. At a later stage, a life goal may be to return to employment or participation in the local community. Regardless of the stage of management, LPAA emphasizes the attainment of re-engagement in life by strengthening daily participation in activities of choice. Residual skill is thus seen as only one of many requisites. For example, full participation is dependent on motivation and a consistent and dependable support system. A highly supportive environment can lessen the consequences of aphasia on one's life, whatever the language impairment. A non-supportive environment, on the other hand, can substantially increase the chance of aphasia affecting daily routines. Someone with mild aphasia in a non-supportive environment might experience greater daily encumbrances than another with severe aphasia who is highly supported. In this broadening and refocusing of services, LPAA recommends that clinicians and researchers consider the dual function of communication—transmitting and receiving messages, and establishing and maintaining social links. Furthermore, life activities do not need to be in the realm of communication in order to deserve or receive intervention. What is important is to judge whether aphasia affects the execution of activities of choice and one’s involvement in them. Origins of LPAA 1. Functional and Pragmatic Approaches LPAA draws on ideas underlying functional and pragmatic approaches to aphasia and shares some common values with those who take a broad approach to functional communication treatment by focusing on life participation goals and social relationships. In our view, however, the term “functional” does not do justice to the breadth of this work. In addition, the term is often used narrowly to mean “functional independence in getting a message across.” Although LPAA recognizes the value of this type of impairment-level work, it should form part of a bigger picture where the ultimate goal for intervention is re-engagement into everyday society. 2. Human Rights Issues and Consumers’s Goals LPAA is a means of addressing unmet needs and rights of individuals with aphasia and those in their environment. Indeed, the Americans With Disabilities Act (ADA), signed into law on July 26, 1990, requires that physical and communication access be provided for individuals with aphasia and other disabilities and allows them legal recourse if they are blocked from accessing employment, programs, and services in the public and private sectors. In 1992, ASHA provided guidelines for a “Communication Bill of Rights” (National Joint Committee for the Communicative Needs of Persons with Severe Disabilities). Its preface states that“all persons, regardless of the extent or severity of their disabilities, have a basic right to affect, through communication, the conditions of their own existence.” Communication is defined as “a basic need and basic right of all human beings.” ASHA thus views communication as an integral part of life participation. 3. Emphasis on Competence and Inclusion LPAA philosophy embraces a view of treatment that emphasizes competence and inclusion in daily life, focusing as much on the consequences of chronic disorders as on the language difficulty caused by the aphasia. Along with other movements in education and health care, LPAA shifts from a focus on deficits and remediation to one of inclusion and life participation (see Fougeyrollas et al., 1997; WHO, ICIDH-2, 1997). Such international changes in focus point to the need to address the personal experience of disability and promote optimal life inclusion and reintegration into society. 4. Changes in Reimbursement and Service Delivery Health care and reimbursement in the United States have undergone an unprecedented overhaul. Financial exigencies have led to an emphasis on medically essential treatments and others seen as likely to save on future health care costs. Many of the incentives in this model result in the provision of efficient short-term minimal care, rather than the longer term, fuller care supported in the past. LPAA represents a fundamental shift in how we view service delivery for people confronting aphasia. Since LPAA focuses on broader life-related processes and outcomes from the onset of treatment, service delivery and its reimbursement will require novel means that stand outside most current practices. We are confident that cost-sensitive and therapeutically effective models are possible. Our purpose in this introductory article is to prompt a discussion with providers and consumers as to whether life participation principles and values should play a more central role in the delivery and reimbursement of future service delivery for all those affected by aphasia. The Core Values of LPAA LPAA is structured around five core values that serve as guides to assessment, intervention, and research. 1. The explicit goal is enhancement of life participation. In the LPAA approach, the first focus of the client, clinician, and policy maker is to assess the extent to which persons affected by aphasia are able to achieve life participation goals, and the extent to which the aphasia hinders the attainment of these desired outcomes. The second focus is to improve short- and long-term participation in life. 2. Everyone affected by aphasia is entitled to service. LPAA supports all those affected directly by aphasia, including immediate family and close associates of the adult with aphasia. The LPAA approach holds that it is essential to build protected communities within society where persons with aphasia are not only able to participate but are valued as participants. Therefore, intervention may involve changing broader social systems to make them more accessible to those affected by aphasia. 3. Success measures include documented life enhancement changes. The LPAA approach calls for the use of outcome measures that assess quality of life and the degree to which those affected by aphasia meet their life participation goals. Without a cause to communicate, we believe there is no practical need for communication. Therefore, treatment focuses on a reason to communicate as much as on communication repair. In so doing, treatment attends to each consumer's feelings, relationships, and activities in life. 4. Both personal and environmental factors are intervention targets. Disruption of daily life for individuals affected by aphasia (including those who do not have aphasia themselves) is evident on two levels: personal (internal) and environmental (external). Intervention consists of constantly assessing, weighing, and prioritizing which personal and environmental factors should be targets of intervention, and how best to provide freer, easier, and more autonomous access to activities and social connections of choice. This does not mean that treatment comprises only life resumption processes, but rather that enhanced participation in life“governs” management from its inception. In this fundamental way, the LPAA approach differs from one in which life enhancement is targeted only after language repair has been addressed. 5. Emphasis is on availability of services as needed at all stages of aphasia. LPAA begins with the onset of aphasia and continues until consumers and providers agree that targeted life enhancement changes have occurred. However, LPAA acknowledges that life consequences of aphasia change over time and should be addressed regardless of the length of time post-onset. Consumers are therefore permitted to discontinue intervention, and re-enter treatment when there is a felt need to continue work on a goal or to attain a new life goal. Conclusions Our health care systems are undergoing change and, as a result, so are our professions. How we allow this change to affect our clinical practice, our research directions, and our response to consumer advocacy is up to us. We need to educate policy makers that being fiscally responsible means having a consumer-driven model of intervention focusing on interventions that make real-life differences and minimize the consequences of disease and injury. While it is clear that the implicit motivation underlying all clinical and research efforts in aphasia is related to increased participation in life, the way of achieving that goal is often indirect. Because LPAA makes life goals primary and explicit, it holds promise as an approach in which such goals are attainable. We invite other SLPs to join us in discussing and developing life participation approaches to aphasia. References Fougeyrollas P., Cloutier R., Bergeron H., Cote J., Cote M., & St. Michel G. (1997). Revision of the Quebec Classification: Handicap creation process. Lac St-Charles, Quebec: International Network on the Handicap Creation Process. Google Scholar National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities.Asha, 34 (March, Supp. 7), 1–8. Google Scholar World Health Organization. (1997). International classification of impairments, activities and participation. A manual of dimensions of disablement and functions. Beta-1draft for field trials. Geneva, Switzerland: Author. Google Scholar Author Notes Roberta Chapey, is professor in the Department of Speech Communication Arts and Sciences at Brooklyn College, City University of New York. Judith Duchan, is professor in the Department of Communicative Disorders and Sciences at the University of Buffalo. Roberta J. Elman, is president/CEO and founder of the Aphasia Center of California. Linda J. Garcia, is assistant professor in the Audiology/Speech-Language Pathology Program at the University of Ottawa. Aura Kagan, is program and research director at The Aphasia Institute (incorporating the Pat Arato Aphasia Centre) in Toronto, and is affiliated with the University of Toronto. Jon G. Lyon, is director of Living with Aphasia, Inc. in Mazomanie, Wisconsin. Nina Simmons Mackie, is professor in the Department of Special Education and Communication Sciences & Disorders at Southeastern Louisiana University. Advertising Disclaimer | Advertise With Us Advertising Disclaimer | Advertise With Us Additional Resources FiguresSourcesRelatedDetailsCited byAmerican Journal of Speech-Language Pathology32:2 (391-410)9 Mar 2023“Please Don't Assess Him to Destruction”: The R.A.I.S.E. 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