Publication Year: 2013
This volume in The SAGE Reference Series on Disability explores issues involving rehabilitation interventions and therapies. It is one of eight volumes in the cross-disciplinary and issues-based series, which incorporates links from varied fields making up Disability Studies as volumes examine topics central to the lives of individuals with disabilities and their families. With a balance of history, theory, research, and application, specialists set out the findings and implications of research and practice for others whose current or future work involves the care and/or study of those with disabilities, as well as for the disabled themselves. The presentational style (concise and engaging) emphasizes accessibility. Taken individually, each volume sets out the fundamentals of the topic it addresses, accompanied by compiled data and statistics, recommended further ...
- Front Matter
- Back Matter
- Subject Index
- Chapter 1: Introduction, Background, and History
- Chapter 2: Current Issues, Controversies, and Solutions
- Chapter 3: Chronology of Critical Events
- Chapter 4: Biographies of Key Contributors in the Field
- Chapter 5: Annotated Data, Statistics, Tables, and Graphs
- Chapter 6: Annotated List of Organizations and Associations
- Chapter 7: Selected Print and Electronic Resources
The SAGE Reference Series on Disability: Key Issues and Future Directions
Series Editor: Gary L. Albrecht
Arts and Humanities, by Brenda Jo Brueggemann
Assistive Technology and Science, by Cathy Bodine
Disability Through the Life Course, by Tamar Heller and Sarah Parker Harris
Education, by Cheryl Hanley-Maxwell and Lana Collet-Klingenberg
Employment and Work, by Susanne M. Bruyère and Linda Barrington
Ethics, Law, and Policy, by Jerome E. Bickenbach
Health and Medicine, by Ross M. Mullner
Rehabilitation Interventions, by Margaret A. Turk and Nancy R. Mudrick
Copyright © 2013 by SAGE Publications, Inc.
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
Printed in the United States of America.
A catalog record of this book is available from the Library of Congress
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Series Introduction[Page vii]
The SAGE Reference Series on Disability appears at a time when global attention is being focused on disability at all levels of society. Researchers, service providers, and policymakers are concerned with the prevalence, experience, meanings, and costs of disability because of the growing impact of disability on individuals and their families and subsequent increased demand for services (Banta & de Wit, 2008; Martin et al., 2010; Mont, 2007; Whitaker, 2010). For their part, disabled people and their families are keenly interested in taking a more proactive stance in recognizing and dealing with disability in their lives (Charlton, 1998; Iezzoni & O'Day, 2006). As a result, there is burgeoning literature, heightened Web activity, myriad Internet information and discussion groups, and new policy proposals and programs designed to produce evidence and disseminate information so that people with disabilities may be informed and live more independently (see, for example, the World Institute of Disability Web site at http://www.wid.org, the Center for International Rehabilitation Research Information and Exchange Web site at http://cirrie.buffalo.edu, and the Web portal to caregiver support groups at http://www.caregiver.com/regionalresources/index.htm).
Disability is recognized as a critical medical and social problem in current society, central to the discussions of health care and social welfare policies taking place around the world. The prominence of these disability issues is highlighted by the attention given to them by the most respected national and international organizations. The World Report on Disability (2011), co-sponsored by the World Health Organization (WHO) and the World Bank and based on an analysis of surveys from over 100 countries, estimates that 15% of the world's population (more than 1 billion people) currently experiences disability. This is the best prevalence estimate available today and indicates a marked increase over previous epidemiological calculations. Based on this work, the British [Page viii]medical journal Lancet dedicated an entire issue (November 28, 2009) to disability, focusing attention on the salience of the problem for health care systems worldwide. In addition, the WHO has developed community-based rehabilitation principles and strategies which are applicable to communities of diverse cultures and at all levels of development (WHO, 2010). The World Bank is concerned because of the link between disability and poverty (World Bank, 2004). Disability, in their view, could be a major impediment to economic development, particularly in emerging economies.
Efforts to address the problem of disability also have legal and human rights implications. Being disabled has historically led to discrimination, stigma, and dependency, which diminish an individual's full rights to citizenship and equality (European Disability Forum, 2003). In response to these concerns, the United Nations Convention on the Rights of Persons with Disabilities (2008) and the European Union Disability Strategy embodying the Charter of Fundamental Rights (2000) were passed to affirm that disabled people have the right to acquire and change nationalities, cannot be deprived of their ability to exercise liberty, have freedom of movement, are free to leave any country including their own, are not deprived of the right to enter their own country, and have access to the welfare and benefits afforded to any citizen of their country. As of March 31, 2010, 144 nations—including the United States, China, India, and Russia—had signed the U.N. Convention, and the European Union Disability Strategy had been ratified by all members of the European Community. These international agreements supplement and elaborate disability rights legislation such as the Americans with Disabilities Act of 1990 and its amendments, the U.K. Disability Discrimination Act of 1995, and the Disabled Person's Fundamental Law of Japan, revised in 1993.
In the United States, the Institute of Medicine of the National Academy of Sciences has persistently focused attention on the medical, public health, and social policy aspects of disability in a broad-ranging series of reports: Disability in America (1991), Enabling America (1997), The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs (2002), The Future of Disability in America (2007), and Improving the Presumptive Disability Decision-Making Process for Veterans (2008). The Centers for Disease Control have a long-standing interest in diabetes and obesity because of their effects on morbidity, mortality, and disability. Current data show that the incidence and prevalence of obesity is rising across all age groups in the United States, that obesity is related to diabetes, which is also on the rise, and that both, taken together, increase the likelihood of experiencing disability [Page ix](Bleich et al., 2008; Gill et al., 2010). People with diabetes also are likely to have comorbid depression, which increases their chances of functional disability (Egede, 2004).
Depression and other types of mental illness—like anxiety disorders, alcohol and drug dependence, and impulse-control disorders—are more prevalent than previously thought and often result in disability (Kessler & Wang, 2008). The prevalence of mental disorders in the United States is high, with about half of the population meeting criteria (as measured by the Diagnostic and Statistical Manual of Mental Disorders, or DSM-IV) for one or more disorders in their lifetimes, and more than one-quarter of the population meeting criteria for a disorder in any single year. The more severe mental disorders are strongly associated with high comorbidity, resulting in disability.
Major American foundations with significant health portfolios have also turned their attention to disability. The Bill and Melinda Gates Foundation has directed considerable resources to eliminate disability-causing parasitic and communicable diseases such as malaria, elephantiasis, and river blindness. These efforts are designed to prevent and control disability-causing conditions in the developing world that inhibit personal independence and economic development. The Robert Wood Johnson Foundation has a long-standing program on self-determination for people with developmental disabilities in the United States aimed at increasing their ability to participate fully in society, and the Hogg Foundation is dedicated to improving mental health awareness and services. Taken in concert, these activities underscore the recognized importance of disability in the present world.Disability Concepts, Models, and Theories
There is an immense literature on disability concepts, models, and theories. An in-depth look at these issues and controversies can be found in the Handbook of Disability Studies (Albrecht, Seelman, & Bury, 2001), in the Encyclopedia of Disability (Albrecht, 2006), and in “The Sociology of Disability: Historical Foundations and Future Directions” (Albrecht, 2010). For the purposes of this reference series, it is useful to know that the World Health Organization, in the International Classification of Functioning, Disability and Health (ICF), defines disability as “an umbrella term for impairments, activity limitations or participation restrictions” (WHO, 2001, p. 3). ICF also lists environmental factors that interact with all these constructs. Further, the WHO defines impairments as “problems in body function or [Page x]structure such as significant deviation or loss;” activity limitations as “difficulties an individual may have in executing activities;” participation as “involvement in a life situation;” and environmental factors as those components of “the physical, social and attitudinal environment in which people live and conduct their lives” (WHO, 2001, p. 10). The U.N. Convention on the Rights of Persons with Disabilities, in turn, defines disability as including “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” In the introduction to the Lancet special issue on disability, Officer and Groce (2009) conclude that “both the ICF and the Convention view disability as the outcome of complex interactions between health conditions and features of an individual's physical, social, and attitudinal environment that hinder their full and effective participation in society” (p. 1795). Hence, disability scholars and activists alike are concerned with breaking down physical, environmental, economic, and social barriers so that disabled people can live independently and participate as fully as possible in society.Types of Disability
Interest in disability by medical practitioners has traditionally been condition specific (such as spinal cord injury or disabilities due to heart disease), reflecting the medical model approach to training and disease taxonomies. Similarly, disabled people and their families are often most concerned about their particular conditions and how best to deal with them. The SAGE Reference Series on Disability recognizes that there are a broad range of disabilities that can be generally conceived of as falling in the categories of physical, mental, intellectual, and sensory disabilities. In practice, disabled persons may have more than one disability and are often difficult to place in one disability category. For instance, a spinalcord injured individual might experience depression, and a person with multiple sclerosis may simultaneously deal with physical and sensory disabilities. It is also important to note that disabilities are dynamic. People do experience different rates of onset, progression, remission, and even transition from being disabled at one point in time, to not being disabled at another, to being disabled again. Examples of this change in disability status include disability due to bouts of arthritis, Guillain-Barré Syndrome, and postpartum depression.[Page xi]Disability Language
The symbols and language used to represent disability have sparked contentious debates over the years. In the Handbook of Disability Studies (Albrecht, Seelman, & Bury, 2001) and the Encyclopedia of Disability (Albrecht, 2006), authors from different countries were encouraged to use the terms and language of their cultures, but to explain them when necessary. In the present volumes, authors may use “people with disabilities” or “disabled people” to refer to individuals experiencing disability. Scholars in the United States have preferred “people with disabilities” (people-first language), while those in the United Kingdom, Canada, and Australia generally use “disabled people.” In languages other than English, scholars typically use some form of the “disabled people” idiom. The U.S. version emphasizes American exceptionalism and the individual, whereas “disabled people” highlights the group and their minority status or state of being different. In my own writing, I have chosen “disabled people” because it stresses human diversity and variation.
In a recent discussion of this issue, DePoy and Gilson (2010) “suggest that maintaining debate and argument on what language is most correct derails a larger and more profound needed change, that of equalizing resources, valuation, and respect. Moreover, … locating disability ‘with a person’ reifies its embodiment and flies in the very face of the social model that person-first language is purported to espouse. … We have not heard anyone suggest that beauty, kindness, or even unkindness be located after personhood.” While the debate is not likely over, we state why we use the language that we do.Organization of the Series
These issues were important in conceiving of and organizing the SAGE Reference Series on Disability. Instead of developing the series around specific disabilities resulting from Parkinson's disease or bi-polar disorder, or according to the larger categories of physical, mental, intellectual, and sensory disabilities, we decided to concentrate on the major topics that confront anyone interested in or experiencing disability. Thus, the series consists of eight volumes constructed around the following topics:
- Arts and Humanities
- Assistive Technology and Science [Page xii]
- Disability Through the Life Course
- Employment and Work
- Ethics, Law, and Policy
- Health and Medicine
- Rehabilitation Interventions
To provide structure, we chose to use a similar organization for each volume. Therefore, each volume contains the following elements:
Series IntroductionThe Audience
The eight-volume SAGE Reference Series on Disability targets an audience of undergraduate students and general readers that uses both academic and public libraries. However, the content and depth of the series will also make it attractive to graduate students, researchers, and policymakers. The series has been edited to have a consistent format and accessible style. The focus in each volume is on providing lay-friendly overviews of broad issues and guideposts for further research and exploration.
The series is innovative in that it will be published and marketed worldwide, with each volume available in electronic format soon after it appears in print. The print version consists of eight bound volumes. The electronic version is available through the SAGE Reference Online [Page xiii]platform, which hosts 200 handbooks and encyclopedias across the social sciences, including the Handbook of Disability Studies and the Encyclopedia of Disability. With access to this platform through college, university, and public libraries, students, the lay public, and scholars can search these interrelated disability and social science sources from their computers or handheld and smart phone devices. The movement to an electronic platform presages the cloud computing revolution coming upon us. Cloud computing “refers to ‘everything’ a user may reach via the Internet, including services, storage, applications and people” (Hoehl & Sieh, 2010). According to Ray Ozzie (2010), recently Microsoft's chief architect, “We're moving toward a world of (1) cloud-based continuous services that connect us all and do our bidding, and (2) appliance-like connected devices enabling us to interact with those cloud-based services.” Literally, information will be available at consumers' fingertips. Given the ample links to other resources in emerging databases, they can pursue any topic of interest in detail. This resource builds on the massive efforts to make information available to decision makers in real time, such as computerizing health and hospital records so that the diagnosis and treatment of chronic diseases and disabilities can be better managed (Celler, Lovell, & Basilakis, 2003). The SAGE Reference Series on Disability provides Internet and Web site addresses which lead the user into a world of social networks clustered around disability in general and specific conditions and issues. Entering and engaging with social networks revolving around health and disability promises to help individuals make more informed decisions and provide support in times of need (Smith & Christakis, 2008). The SAGE Reference Online platform will also be configured and updated to make it increasingly accessible to disabled people.
The SAGE Reference Series on Disability provides an extensive index for each volume. Through its placement on the SAGE Reference Online platform, the series will be fully searchable and cross-referenced, will allow keyword searching, and will be connected to the Handbook of Disability Studies and the Encyclopedia of Disability.
The authors of the volumes have taken considerable effort to vet the references, data, and resources for accuracy and credibility. The multiple Web sites for current data, information, government and United Nations documents, research findings, expert recommendations, self-help, discussion groups, and social policy are particularly useful, as they are being continuously updated. Examples of current and forthcoming data [Page xiv]are the results and analysis of the findings of the U.S. 2010 Census, the ongoing reports of the Centers for Disease Control on disability, the World Health Organization's World Report on Disability and its updates, the World Bank reports on disability, poverty, and development, and reports from major foundations like Robert Wood Johnson, Bill and Melinda Gates, Ford, and Hogg. In terms of clinical outcomes, the evaluation of cost-effective interventions, management of disability, and programs that work, enormous attention is being given to evidence-based outcomes (Brownson, Fielding, & Maylahn, 2009; Marcus et al., 2006; Wolinsky et al., 2007) and comparative effectiveness research (Etheredge, 2010; Inglehart, 2010). Such data force a re-examination of policymakers' arguments. For example, there is mounting evidence that demonstrates the beneficial effects of exercise on preventing disability and enhancing function (Marcus et al., 2006). Recent studies also show that some health care reform initiatives may negatively affect disabled people's access to and costs of health care (Burns, Shah, & Smith, 2010). Furthermore, the seemingly inexorable rise in health care spending may not be correlated with desirable health outcomes (Rothberg et al., 2010). In this environment, valid data are the currency of the discussion (Andersen, Lollar, & Meyers, 2000). The authors' hopes are that this reference series will encourage students and the lay public to base their discussions and decisions on valid outcome data. Such an approach tempers the influence of ideologies surrounding health care and misconceptions about disabled people, their lives, and experiences.
SAGE Publications has made considerable effort to make these volumes accessible to disabled people in the printed book version and in the electronic platform format. In turn, SAGE and other publishers and vendors like Amazon are incorporating greater flexibility in the user interface to improve functionality to a broad range of users, such as disabled people. These efforts are important for disabled people as universities, governments, and health service delivery organizations are moving toward a paperless environment.
In the spirit of informed discussion and transparency, may this reference series encourage people from many different walks of life to become knowledgeable and engaged in the disability world. As a consequence, social policies should become better informed and individuals and families should be able to make better decisions regarding the experience of disability in their lives.[Page xv]Acknowledgments
I would like to recognize the vision of Rolf Janke in developing SAGE Publications' presence in the disability field, as represented by the Handbook of Disability Studies (2001), the five-volume Encyclopedia of Disability (2006), and now the eight-volume SAGE Reference Series on Disability. These products have helped advance the field and have made critical work accessible to scholars, students, and the general public through books and now the SAGE Reference Online platform. Jim Brace-Thompson at SAGE handled the signing of contracts and kept this complex project coordinated and moving on time. Kevin Hillstrom and Laurie Collier Hillstrom at Northern Lights Writers Group were intrepid in taking the composite pieces of this project and polishing and editing them into a coherent whole that is approachable, consistent in style and form, and rich in content. The authors of the eight volumes—Linda Barrington, Jerome Bickenbach, Cathy Bodine, Brenda Brueggemann, Susanne Bruyère, Lana Collet-Klingenberg, Cheryl Hanley-Maxwell, Sarah Parker Harris, Tamar Heller, Nancy Mudrick, Ross Mullner, and Peggy Turk—are to be commended for their enthusiasm, creativity, and fortitude in delivering high-quality volumes on a tight deadline. I was fortunate to work with such accomplished scholars.
Discussions with Barbara Altman, Colin Barnes, Catherine Barral, Len Barton, Isabelle Baszanger, Peter Blanck, Mary Boulton, David Braddock, Richard Burkhauser, Mike Bury, Ann Caldwell, Lennard Davis, Patrick Devlieger, Ray Fitzpatrick, Lawrence Frey, Carol Gill, Tamar Heller, Gary Kielhofner, Soewarta Kosen, Jo Lebeer, Mitch Loeb, Don Lollar, Paul Longmore, Ros Madden, Maria Martinho, Dennis Mathews, Sophie Mitra, Daniel Mont, Alana Officer, Randall Parker, David Pfeiffer, Jean-François Raveau, James Rimmer, Ed Roberts, Jean-Marie Robine, Joan Rogers, Richard Scotch, Kate Seelman, Tom Shakespeare, Sandor Sipos, Henri-Jacques Stiker, Edna Szymanski, Jutta Traviranus, Bryan Turner, Greg Vanderheiden, Isabelle Ville, Larry Voss, Ann Waldschmidt, and Irving Kenneth Zola over the years contributed to the content, logic, and structure of the series. They also were a wonderful source of suggestions for authors.
I would also like to acknowledge the hospitality and support of the Belgian Academy of Science and the Arts, the University of Leuven, Nuffield College, the University of Oxford, the Fondation Maison des Sciences de l'Homme, Paris, and the Department of Disability and Human [Page xvi]Development at the University of Illinois at Chicago, who provided the time and environments to conceive of and develop the project. While none of these people or institutions is responsible for any deficiencies in the work, they all helped enormously in making it better.University of Illinois at Chicago University of Leuven Belgian Academy of Science and ArtsReferencesAlbrecht, G. L. (Ed.). (2006). Encyclopedia of disability (5 vols.). Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/97814129505102010). The sociology of disability: Historical foundations and future directions. In C.Bird, A.Fremont, S.Timmermans, & P.Conrad (Eds.), Handbook of medical sociology ((6th ed., pp. 192–209). Nashville, TN: Vanderbilt University Press.Albrecht, G. L., Seelman, K. D., & Bury, M. (Eds.). (2001). Handbook of disability studies. Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/97814129762512000). Disability outcomes research: Why this supplement, on this topic, at this time?Archives of Physical Medicine and Rehabilitation, 81, S1–S4., , & (2008). Public health services and cost-effectiveness analysis. Annual Review of Public Health, 29, 383–397. http://dx.doi.org/10.1146/annurev.publhealth.29.020907.090808, & (2008). Why is the developed world obese?Annual Review of Public Health, 29, 273–295. http://dx.doi.org/10.1146/annurev.publhealth.29.020907.090954, , , & (2009). Evidence-based public health: A fundamental concept for public health practice. Annual Review of Public Health, 30, 175–201. http://dx.doi.org/10.1146/annurev.publhealth.031308.100134, , & (2010). Why some disabled adults in Medicaid face large out-of-pocket expenses. 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The Lancet, 374, 1795–1796. http://dx.doi.org/10.1016/S0140-6736%2809%2961527-0, & (2010, October 28). Dawn of a new day. Ray Ozzie's Blog. Retrieved from http://ozzie.net/docs/dawn-of-a-new-day(2010). Little evidence of correlation between growth in health care spending and reduced mortality. Health Affairs, 29, 1523–1531. http://dx.doi.org/10.1377/hlthaff.2009.0287, , , , & ([Page xviii]2008). Social networks and health. Annual Review of Sociology, 34, 405–429. http://dx.doi.org/10.1146/annurev.soc.34.040507.134601, & (2008). Convention on the rights of persons with disabilities. New York: United Nations. Retrieved from http://un.org/disabilities/convention. (2010). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. New York: Crown. http://dx.doi.org/10.1891/1559-4322.214.171.124(2007). Effect of subclinical status in functional limitation and disability on adverse health outcomes 3 years later. 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Rehabilitation Interventions is part of the eight-volume SAGE Reference Series on Disability: Key Issues and Future Directions. It is organized to follow the template developed by the series editor, Gary L. Albrecht, Ph.D. The series encompasses a variety of contexts and issues related to disability, with a goal to elucidate those major topics that challenge people experiencing disability and those interested in disability issues. Consequently, the target audience is not the professionals interacting with people with disabilities, but students and general readers who have access to public and academic libraries.
The term rehabilitation has had many uses and overuses over many decades. The term's origins date back to the 13th and 14th centuries, when it referred to “making fit” or “restoring” to a better condition. Initial use of the term is not altogether clear; however, many types or descriptions of rehabilitation are now in common usage: physical, correctional, vocational, medical, drug and alcohol, urban, cognitive, image and reputation, architectural, ecologic, and political, to name a few. This volume will discuss rehabilitation in the context of intervention programs and strategies; health, activity, psychosocial, and medical interventions; and legislation and policies—all under the umbrella of disability.
How do rehabilitation interventions fit within the umbrella of disability? As is noted in the Health and Medicine volume in this series, there are competing models of disability (i.e., medical, functional, and social), with a recent suggestion of promoting an integrated model of disability through the International Classification of Functioning, Disability, and Health (ICF). Rehabilitation should be viewed through this integrated and coordinated model, with interventions focused on health conditions, impairments, activity, and social participation within the context of the environment and personal factors. Children and adults with disabilities usually engage and participate in rehabilitation interventions and strategies [Page xx]at some time in their lives—some temporarily, some in relation to an unexpected event in life, and some for a lifetime.
Despite this view, there are many interpretations of rehabilitation interventions that concentrate on a single aspect of the ICF. For many, rehabilitation is a medical experience. Indeed, for some people with disabilities, this is often the experience they remember (some not so fondly), dealing with medications or procedures (i.e., medical condition, impairment). Other interpretations focus on a specific discipline that works in rehabilitation, such as physical therapy or psychology (i.e., personal factors). Individual interventions and modalities such as exercise, splinting, gait training, or electrical stimulation are believed by some to represent rehabilitation (i.e., activity). And there are those who view public policy, organization of systems, financing, and legislation as the key aspects of disability (i.e., participation, environment). However, to fully grasp an understanding of rehabilitation interventions requires discussion of each of these aspects. It requires an appreciation of the influence of each element and of the need for coordination of service components. Consequently, compiling this volume required the authors to maintain a broad view of the subject.
There are therefore a variety of concepts to be covered under this topic. The intent is not to provide a detailed review of individual topics, such as service providers or specific modalities, but rather to identify broad topics of interest that describe an overview and history of the field, have shaped the present-day system, will have influence on future directions, or can provide resources or background information.
Of note is the fact that the World Report on Disability (WRD) has been published since we began writing this volume, and since the inception of this SAGE Reference Series on Disability. WRD is an important work on disability that was written and developed over more than 3 years, through the efforts of the World Health Organization and the World Bank. One of the nine chapters in WRD is devoted to rehabilitation (Chapter 4), and it outlines six international recommendations related to policies, financing, capacity for service provision, service delivery, technology, and research/evidence-based practice. The United States, although a leader in some features of each of these areas, does have more to accomplish regarding rehabilitation interventions provided. This volume, although not by design, touches upon each of these six areas and provides the reader with a context for understanding the importance of the broad view.
This volume details the experiences of the United States in the development and growth of the field, identification of key components, creation of policy and legislation, and conception of current issues. Rehabilitation [Page xxi]was not used within the context of a holistic and coordinated approach until the mid-20th century, as a result of military actions and the survival of wounded troops. In the scheme of the history of medical and health systems, this is a relatively new term and concept. In fact, multiple other terms were considered (e.g., reconstruction, reeducation, reconditioning), and rehabilitation ultimately gained the most acceptance. However, it has been shaped, and continues to morph, through military conflict complications, policy and legislation, public outcry, philanthropy, and advocacy. This volume follows the changes into the 21st century.
As noted, the volume follows the designated format for the overall series, with seven chapters as the basis of the topical review.
- Chapter 1 provides an overview of the rehabilitation process, and it includes a historical review of important issues of the times that affected rehabilitation development. Also covered are the importance of legislation, the status of research and science, and issues of financing.
- Chapter 2 reviews the present administrative structure and funding streams and the conflicts among them, outlines the changing organizational structure of rehabilitation in the health care arena, and acknowledges the limited and competing training for health care professionals about disability issues. Additional note is made of the need for attention to transitions of services related to rehabilitation and disability, innovative access prospects, and gaps or leading-edge opportunities in research.
- Chapter 3 follows historically some key activities and actions that have shaped rehabilitation as we know it.
- Chapter 4 offers biographies of important contributors to the field, identifying both historical contributors as well as those who are more contemporary.
- Chapter 5 provides tables and graphs that outline major federal legislation, define the venues of rehabilitation services delivery, and represent the state of rehabilitation service delivery today.
- Chapter 6 lists organizations and associations associated with rehabilitation, with descriptions and contact information.
- Chapter 7 identifies resources about rehabilitation through electronic and print media.
It is our hope that the volume will offer some insights into rehabilitation interventions and develop some excitement about the field. Rehabilitation interventions are built upon partnerships that involve the individual with a disability, his or her family members, and professionals from a number of fields. The focus is not to “cure” but to enable full participation in work, family life, and the community. This is the 21st century perspective on disability.
The challenges for the future, as efforts to rein in health care costs accelerate, will inevitably involve tensions around the financing of interventions that extend beyond the acute phase of a medical event and beyond [Page xxii]the inpatient medical setting. Nonetheless, we would like to offer a vision of a possible future in which healthy, accessible communities, built with the principles of universal design, become seamlessly integrated with rehabilitation interventions for persons with disabilities.Acknowledgments
We would like to thank Jim Brace-Thompson, senior editor at SAGE Reference, for his understanding and patience while we worked and reworked our outline and chapters. Despite our repeated extensions, we appreciate his continued support. Laurie and Kevin Hillstrom, the copy editors, are to be commended for their repeated efforts to move us along to achieve a completed product. Thanks to Gary Albrecht, who provided a cheering section for us in our quest to define rehabilitation in a concise yet broad fashion.
Thank you to the many colleagues who responded to queries, answered requests for assistance, and offered general moral support. Our list includes Dale Avers, Jim Belini, Ruth Brannon, Kim Brown, Dominic Carone, Jan Coyle, James E. Graham, Carl Granger, Lori Holmes, Shernaz Hurlong, Ernest W. Johnson, Steve Lebduska, Chris Lighthipe, Lynne Logan, Michael Marge, Tanya Marsala, Kathy Rake, Brian Rieger, Joanne Scandale, Michelle Taylor, and Dick Verville. We thank Mengke Liang and Chari Mayer for their research assistance. For those whose names we have missed, we are truly sorry.
Dr. Turk wishes to acknowledge the Department of Physical Medicine and Rehabilitation, Upstate Medical University, for supporting this writing project. In particular, she thanks Dr. Robert Weber, chairman of the department, for his support, insights, and knowledge. She also thanks her family and colleagues.
Dr. Mudrick thanks her colleagues at Syracuse University and in the disability research community for conversations that helped in a number of ways, and the staff of the School of Social Work at Syracuse for their assistance. She thanks her husband, Eric Schiff, for his patience and his unflagging encouragement.and
About the Authors
About the Series Editor[Page xxvii]
Gary L. Albrecht is a Fellow of the Royal Belgian Academy of Arts and Sciences, Extraordinary Guest Professor of Social Sciences, University of Leuven, Belgium, and Professor Emeritus of Public Health and of Disability and Human Development at the University of Illinois at Chicago. After receiving his Ph.D. from Emory University, he has served on the faculties of Emory University in Sociology and Psychiatry, Northwestern University in Sociology, Rehabilitation Medicine, and the Kellogg School of Management, and the University of Illinois at Chicago (UIC) in the School of Public Health and in the Department of Disability and Human Development. Since retiring from the UIC in 2005, he has divided his time between Europe and the United States, working in Brussels, Belgium, and Boulder, Colorado. He has served as a Scholar in Residence at the Maison des Sciences de l'Homme (MSH) in Paris, a visiting Fellow at Nuffield College, the University of Oxford, and a Fellow in Residence at the Royal Flemish Academy of Science and Arts, Brussels.
His research has focused on how adults acknowledge, interpret, and respond to unanticipated life events, such as disability onset. His work, supported by over $25 million of funding, has resulted in 16 books and over 140 articles and book chapters. He is currently working on a longitudinal study of disabled Iranian, Moroccan, Turkish, Jewish, and Congolese immigrants to Belgium. Another current project involves working with an international team on “Disability: A Global Picture,” Chapter 2 of the World Report on Disability, co-sponsored by the World Health Organization and the World Bank, published in 2011.
He is past Chair of the Medical Sociology Section of the American Sociological Association, a past member of the Executive Committee of the [Page xxviii]Disability Forum of the American Public Health Association, an early member of the Society for Disability Studies, and an elected member of the Society for Research in Rehabilitation (UK). He has received the Award for the Promotion of Human Welfare and the Eliot Freidson Award for the book The Disability Business: Rehabilitation in America. He also has received a Switzer Distinguished Research Fellowship, Schmidt Fellowship, New York State Supreme Court Fellowship, Kellogg Fellowship, National Library of Medicine Fellowship, World Health Organization Fellowship, the Lee Founders Award from the Society for the Study of Social Problems, the Licht Award from the American Congress of Rehabilitation Medicine, the University of Illinois at Chicago Award for Excellence in Teaching, and has been elected Fellow of the American Association for the Advancement of Science (AAAS). He has led scientific delegations in rehabilitation medicine to the Soviet Union and the People's Republic of China and served on study sections, grant review panels, and strategic planning committees on disability in Australia, Canada, the European Community, France, Ireland, Japan, Poland, South Africa, Sweden, the United Kingdom, the United States, and the World Health Organization, Geneva. His most recent books are The Handbook of Social Studies in Health and Medicine, edited with Ray Fitzpatrick and Susan Scrimshaw (SAGE, 2000), the Handbook of Disability Studies, edited with Katherine D. Seelman and Michael Bury (SAGE, 2001), and the five-volume Encyclopedia of Disability (SAGE, 2006).
Glossary of Key Terms[Page 293]
ACASee Affordable Care Act of 2010 (ACA)
Activities of Daily Living (ADL) A set of daily self-care tasks such as feeding, bathing, dressing, and grooming; the level of ability to perform the ADL items provides a measurement of an individual's degree of disability and functioning. Formal ADL scales are often used in health care settings as part of diagnostic assessments and outcome measurement.
Acute Inpatient Rehabilitation FacilitySee Inpatient Rehabilitation Facility (IRF)
ADASee Americans with Disabilities Act of 1990 (ADA)
ADLSee Activities of Daily Living (ADL)
Affordable Care Act of 2010 (ACA) Also known as the Patient Protection and Affordable Care Act, this health care reform legislation aims to increase the proportion of Americans covered by health insurance, slow the growth of health care costs, and encourage greater attention to prevention, wellness, and use of interventions with proven effectiveness. It includes measures that require some persons without health insurance to purchase it themselves; bar health insurance companies from discriminating based on preexisting medical conditions, health status, or gender; prohibit lifetime limits on coverage; prohibit rescission (dropping) of customers by insurers; create insurance exchanges; require employers with 50 workers or more to offer health insurance benefits or pay a fee; and require the U.S. government to collect data on where people with disabilities get their health care and the accessibility of the facility and medical diagnostic equipment.[Page 294]
Americans with Disabilities Act of 1990 (ADA) This civil rights law prohibits discrimination against people with disabilities in employment, services provided by state and local public agencies, public transportation, public accommodations (private entities that serve the public, such as stores, restaurants, and doctors' offices), and telecommunications; under this law, individuals are considered to have a disability if they have a “physical or mental impairment that substantially limits one or more major life activities,” “have a record of such impairment,” or are “regarded as having such an impairment;” employers are expected to provide “reasonable accommodations,” and public and private entities that provides services (i.e., health care) are expected to make reasonable modifications unless it would cause undue hardship or fundamentally alter the service.
Audiologist A medical professional who identifies, assesses, manages, and interprets test results related to disorders of hearing, balance, and other systems related to hearing.
Case Manager A health professional who collaborates with all service providers and links the needs and values of the patient/consumer with appropriate services and providers within the continuum of health care.
CBRSee Community-Based Rehabilitation (CBR)
Centers for Medicare and Medicaid Services (CMS) A federal agency housed within the U.S. Department of Health and Human Services that has administrative responsibility for the Medicare program and works with state governments to administer the Medicaid and CHIP programs; has other roles with respect to insurance oversight and regulation and the Affordable Care Act; and engages in data collection and research on health care costs, utilization, and outcomes.
Children's Health Insurance Program (CHIP) A federal government program under the Social Security Act that aims to make health insurance available to uninsured children living in low- and moderate-income families that are income-ineligible for Medicaid.
CHIPSee Children's Health Insurance Program (CHIP)[Page 295]
Civil Rights of Institutionalized Persons Act of 1980 (CRIPA) This legislation protects the rights of persons in institutional settings owned or operated on behalf of state or local governments, such as nursing homes, group homes, residential facilities for persons with developmental or intellectual disabilities, mental health facilities, and corrections facilities for juveniles and adults.
CMSSee Centers for Medicare and Medicaid Services (CMS)
Community-Based Rehabilitation (CBR) Rehabilitation services performed outside of institutional settings, including home-based programs with professionals providing services in the home, or community-based services with paraprofessionals or nonmedical professionals providing support.
CRIPASee Civil Rights of Institutionalized Persons Act of 1980 (CRIPA)
Disability A term that encompasses the complex interaction between an individual's physical, built, social, or attitudinal environment and his or her functional limitations from physical or mental impairments.
DMESee Durable Medical Equipment (DME)
Durable Medical Equipment (DME) Assistive devices that serve a medical purpose; are able to withstand repeated use; are not useful to an individual in the absence of an illness, injury, functional impairment, or congenital abnormality; and are appropriate for use in or out of the patient's home.
Early Intervention A broad set of services, including rehabilitation interventions, designed to meet the developmental needs of a child with a disability or developmental delay.
EBPSee Evidence-Based Practice (EBP)
Education for All Handicapped Children Act of 1975 Also known as Public Law 94–142, this was the first federal law ensuring educational opportunity for children with special needs; it established that children with disabilities had a right to a “free and appropriate public education” [Page 296]in the “least restrictive environment;” reauthorized in 1990 as the Individuals with Disabilities Education Act (IDEA).
Evidence-Based Practice (EBP) An approach to medical care that utilizes a systematic review of existing science, combined with clinical experience, to guide decisions regarding care and choice of interventions.
FIM®See Functional Independence Measure (FIM®)
Function The physiological action or activity of a body part, organ, or system.
Functional Independence Measure (FIM®) A widely utilized outcome measure that involves 18 domains of function, can be used for all disabilities and rehabilitation interventions, and describes and can be used to compare the degree of assistance required in each domain prior to and after the intervention. FIM® is a product of the Uniform Data System for Medical Rehabilitation (UDSMR).
HHASee Home Health Agency (HHA)
Hill-Burton Act of 1946 Also known as the Hospital Survey and Construction Act, this legislation provided funding to improve the physical facilities of the nation's hospital system; it also included provisions intended to prevent discrimination by hospitals and to ensure free or low-cost hospital treatment for individuals who could not afford to pay.
Home Health Agency (HHA) A business that offers a wide range of skilled medical services from qualified medical professionals, such as nursing care, physical therapy, and occupational therapy, as well as assistance with activities of daily living from home health aides.
ICFSee International Classification of Functioning, Disability, and Health (ICF)
IDEASee Individuals with Disabilities Education Act of 1990 (IDEA)
Impairment A biomedical, underlying functional condition that is intrinsic to a person and constitutes the essential health component of [Page 297]disability; impairments may be sensory (difficulty in hearing or visual impairment), physical (difficulties in moving or standing up), or psychological (difficulty in coping with stress, depression, or memory loss).
Individuals with Disabilities Education Act of 1990 (IDEA) Also known as P.L. 101–476, this legislation amended and updated the Education for All Handicapped Children Act and established the legal definition of disability used in special education law; it also requires that states provide early intervention services (including rehabilitation services) to infants and toddlers with disabilities (from birth to 3 years of age) and offers financial assistance to states to help fund these obligations.
Inpatient Rehabilitation Facility (IRF) A setting in which services are provided through a separate rehabilitation unit within an acute-care hospital system or in a stand-alone facility.
Instrumental Activities of Daily Living (IADL) A set of daily activities involved in independent living, such as shopping for groceries, preparing meals, doing housework, managing medications, managing money, and using the telephone. The level of ability to perform IADL items is often used in health care settings as a formal measure of function for assessment and outcome purposes.
International Classification of Functioning, Disability, and Health (ICF) Released in 2001 by the World Health Organization (WHO), this conceptual model of disability integrates the medical and social models; it views disability and functioning as outcomes of the interactions between health conditions and contextual factors.
IRFSee Inpatient Rehabilitation Facility (IRF)
Medicaid Created under the Social Security Act in 1965, this public health insurance program targets low-income pregnant women, children, individuals with disability, elderly persons, and some low-income parents.
Medical Model of Disability A conceptual model that focuses on diseases, injuries, and conditions that impair the physiological or cognitive functioning of an individual; it defines disability as a condition or deficit [Page 298]that resides within the individual and can be cured or ameliorated, or its progression stopped, through a treatment or a particular intervention.
Medical Rehabilitation This term describes interventions that are focused on recognition, diagnosis, and treatment of health conditions; on reducing further impairment; and on preventing or treating associated, secondary, or complicating conditions. Although medical and vocational rehabilitation began through joint efforts and programs, they have become separate entities and are regulated and organized through different governmental and service agencies.
Medicare Created under the Social Security Act in 1965, this public insurance program covers persons who have worked and paid Social Security tax and their eligible dependents; it covers hospitalization (Part A), physician and affiliated health professional services (Part B), and medications (Part D), and it reimburses for services provided in a fee-for-service modality or a managed-care structure (Part C).
Mental Health Parity and Addiction Equity Act of 2008 This legislation prohibits group health insurance plans of employers of 50 or more employees from setting different coverage limits for physical and mental health care, provided mental health care is a covered service.
Neuropsychology A medical specialty area in which professionals possess specialized skills in testing procedures and methods that assess various aspects of cognition (e.g., memory, attention, language), emotions, behaviors, personality, effort, motivation, and symptom validity; it is of particular importance in the care of individuals who have sustained brain injuries.
Occupational Therapist (OT) A medical professional who works with patients/consumers through functional activities in order to increase their ability to participate in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), in school and work environments, using a variety of techniques. Typical techniques include functional training, exercise, splinting, cognitive strategies, vision activities, computer programs and activities, recommendation of specially designed or commercially available adaptive equipment, and home/education/work site assessments and recommendations.[Page 299]
Orthotist A medical professional who fabricates and designs custom braces or orthotics to improve the function of those with neuromuscular or musculoskeletal impairments, or to stabilize an injury or impairment through the healing process.
OTSee Occupational Therapist (OT)
Outpatient Rehabilitation Program A set of services that are provided to treat specific health issues, such as pain complaints, musculoskeletal injuries, or a disabling event; the interventions may be single service, informally grouped, or part of an organized team approach. Patients receiving this care live in the community and are not admitted to a hospital.
PACSee Post-Acute Care (PAC)
Patient-Centered Medical Home A model of health care that has been developed to improve coordination across medical practitioners; it generally involves a physician with whom a patient has a strong and continuing relationship so that care is more readily accessible. This physician, aided by information technology, monitors the patient's progress and outcome, coordinates across the individual's team of physicians, and selects treatments with a record of effectiveness.
Physiatrist A physician who specializes in physical medicine and rehabilitation (PM&R), the physiatrist has a focus on function and contributes to the rehabilitation process through diagnosing and managing a patient's medical issues, recognizing the long-term issues of disability and initiating prevention strategies, prognosticating outcomes and needed duration of rehabilitation services, and usually leading the team process.
Physical Medicine and Rehabilitation (PM&R) Also referred to as rehabilitation medicine, this specialty is concerned with evaluating, diagnosing, and treating patients with physical disabilities; subspecialties include brain injury medicine, hospice and palliative care medicine, neuromuscular medicine, pain medicine, pediatric rehabilitation medicine, spinal cord injury medicine, and sports medicine.
Physical Therapist (PT) A health professional who assesses movement dysfunction and uses treatment interventions such as exercise, functional [Page 300]training, manual therapy techniques, gait and balance training, assistive and adaptive devices and equipment, and physical agents, including electrotherapy, massage, and manual traction; the outcome focus of interventions is improved mobility, decreased pain, and reduced physical disability.
PM&RSee Physical Medicine and Rehabilitation (PM&R)
Post-Acute Care (PAC) The continuum of services following an acute hospitalization episode; rehabilitation care over this continuum is designated by site of service and level of care: (1) acute inpatient rehabilitation facility (IRF), (2) subacute care, usually provided within a skilled nursing facility, (3) long-term care, usually provided within a skilled nursing facility (SNF), (4) services provided within the home through home health agencies (HHA), and (5) outpatient services.
Posttraumatic Stress Disorder (PTSD) A type of anxiety disorder that occurs after an individual experiences or is exposed to a traumatic event that involves the threat of injury or death.
PPSSee Prospective Payment System (PPS)
Prospective Payment System (PPS) Introduced by the Centers for Medicare and Medicaid Services in 1992, PPS establishes fixed costs for medical services according to specific diagnosis-related groups (DRGs), under the economic principle that fixed costs improve efficiencies.
Prosthetist A medical professional who works with individuals with partial or total limb absence or amputation to enhance their function by use of a prosthesis (i.e., artificial limb, prosthetic device).
PTSee Physical Therapist (PT)
PTSDSee Posttraumatic Stress Disorder (PTSD)
Recreational Therapist Also referred to as a therapeutic recreation specialist, this health professional uses a variety of treatment techniques and recreation activities to improve and maintain the physical, mental, and emotional well-being of individuals with disabilities or illnesses, with the typical broad goals of greater independence and integration into the community.[Page 301]
Rehabilitation A process designed to optimize function and improve the quality of life of those with disabilities, injuries, or illnesses.
Rehabilitation Act of 1973 A U.S. law that authorizes and provides funding for rehabilitation programs and services, among them the state-federal vocational rehabilitation system, centers for independent living, and the National Institute on Disability and Rehabilitation Research. Section 504 of the act prohibits discrimination on the basis of disability in employment and in the delivery of services by state and private programs that receive federal funding.
Rehabilitation Counselor Previously known as a vocational counselor, this professional assists persons with physical and mental disabilities by determining the training and support their clients need to deal with the personal, social, and vocational effects of their conditions. After evaluating their clients' strengths and limitations, counselors arrange for rehabilitation programs that may include medical care, occupational therapy, and job placement.
Rehabilitation Intervention A comprehensive process to facilitate attainment of the optimal physical, psychological, cognitive, behavioral, social, vocational, avocational, and educational status within the capacity allowed by the anatomic or physiologic impairment, personal desires and life plans, and environmental (dis)advantages for a person with a disability.
Rehabilitation Nurse A medical professional who usually assumes the role of educator and taskmaster throughout the rehabilitation process, and especially within inpatient rehabilitation programs. They are knowledgeable about bladder management, bowel management, and skin care, and they provide education to patients and families about these important areas and also medications to be used at home after discharge.
Rehabilitation Psychology A specialized area of psychology that assists the individual (and family) with any injury, illness, or disability that may be chronic, traumatic, and/or congenital in achieving optimal physical, psychological, and interpersonal functioning.
Section 504 This section of the Rehabilitation Act of 1973 required programs, services, and entities that receive federal funding to make reasonable accommodations and promote accessibility for people with disabilities.[Page 302]
Skilled Nursing Facility (SNF) A facility that provides short-term nursing and rehabilitation care, generally to assist individuals during their recovery following hospitalization for acute medical conditions.
SNFSee Skilled Nursing Facility
Social Model of Disability A conceptual model that focuses on the barriers an individual with disabilities faces when interacting with the environment; it defines disability as a problem that lies primarily outside the individual, in the lack of accommodations in the surrounding environment and in the negative attitudes of people without disabilities.
Social Worker In health settings, this professional may provide case management or coordination for persons with complex medical conditions and needs; help patients navigate the paths between different levels of care; refer patients to legal, financial, housing, or employment services; assist patients with access to entitlement benefits, transportation assistance, or community-based services; identify, assess, refer, or offer treatment for such problems as depression, anxiety, or substance abuse; or provide education or support programming for health or related social problems.
Speech and Language Pathologist A medical professional who assesses, treats, and helps to prevent disorders related to speech, language, cognition, voice, communication, swallowing, and fluency.
Subacute Rehabilitation A set of services, usually housed within skilled nursing facilities (SNF), that are less intense than inpatient services, with lower requirements regarding physician/medical/health accessibility and therapy interventions.
TBISee Traumatic Brain Injury (TBI)
Telerehabilitation The management or delivery of rehabilitation and home health care services remotely, using methods of communication based upon telephones, computers, and the Internet.
Translational Research Planning for research or using existing research so that the results will be applicable to the general population; this term [Page 303]usually relates to basic science research that often identifies one piece of the puzzle and must build from there in order to apply that new knowledge to patient management.
Traumatic Brain Injury (TBI) An injury caused by a blow or jolt to the head or a penetrating head injury that disrupts the normal function of the brain; TBI can cause a wide range of functional changes affecting movement, thinking, sensation, language, and/or emotions. Concussion is a form of TBI, classified as mild TBI, but can result in long-lasting symptoms as previously listed.
UDSMRSee Uniform Data System for Medical Rehabilitation (UDSMR)
Uniform Data System for Medical Rehabilitation (UDSMR) An organization affiliated with the University of Buffalo, State University of New York, that maintains the largest and most comprehensive database internationally about the function of patients participating in medical rehabilitation. The UDSMR FIM® outcome measure has been used and adopted by CMS, certifying agencies, and the majority of the IRF industry. See also FIM®, Centers for Medicare and Medicaid Services, and Inpatient Rehabilitation Facility.
Vocational Rehabilitation (VR) Services designed to help individuals with disabilities gain or regain their independence through employment or some form of meaningful activity and reintegration into society; VR includes such services as vocational guidance, job training, occupational adjustment services, and job placement. See also Rehabilitation Counselor.
VRSee Vocational Rehabilitation (VR)
Workers' Compensation Government-sponsored, employer-financed systems for compensating employees who incur an injury or illness in connection with their employment; such programs typically provide payments for lost wages, health care, and rehabilitation.[Page 304]