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  • 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

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    Series Introduction

    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 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 (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 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 spinal-cord 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.

    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
    • Disability Through the Life Course
    • Education
    • 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 Introduction
    • Preface
    • About the Author
    • About the Series Editor
    • 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
    • Glossary of Key Terms
    • Index
    The 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 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 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.

    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 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.

    Gary L.AlbrechtUniversity of Illinois at Chicago, University of Leuven, Belgian Academy of Science and Arts
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    Preface

    It is fitting that this SAGE Reference Series on Disability includes a volume on Employment and Work. Engaging in meaningful work not only provides each of us the means for economic self-sufficiency and independence, but it also affords us the forum whereby we can utilize our talents and skills and contribute to the community as a whole. All of these benefits of the ability to work are important to everyone, yet people with disabilities historically have been disproportionately underrepresented in the American, and more broadly the global, workforce. The importance of work globally to the well-being of people with disabilities has been confirmed in its inclusion in the United Nations Convention on the Rights of People with Disabilities, adopted in 2006, as Article 27: Work and Employment. It is the purpose of this volume to further elaborate on the importance of work, to individuals with disabilities and society at large, by providing an overview of the employment landscape for people with disabilities over time to the present date, offering an introductory “big picture” overview of selected major areas for consideration and exploration, and suggesting resources where readers might go next in pursuing further information on this topic.

    In Chapter 1, Introduction, Background, and History, we further explore the importance of work, but we also discuss how work limitation has been used over time to actually define disability, and how changing definitions affects the way we count people with disabilities. We provide an overview of factors that affect finding a job in the American job market, including the art of matching supply and demand and the impact of public policy and other factors on the motivation of individuals to seek work. We discuss the Great Recession's impact on the employment of people with disabilities, including resulting economic disparities, as well as inequities in access to health care. This chapter also includes an historical overview of how we have dealt with employment for people with disabilities in America, including services to veterans, industrialization and job injuries, and the expansion of civil rights for people with disabilities.

    In Chapter 2, Current Issues, Controversies, and Solutions, we discuss the factors contributing to continuing economic disparities and employment discrimination for individuals with disabilities, as well as their resulting impact, including failure to accommodate in the workplace, pay gaps, and other compensation disparities beyond wages and salary. Additional disparities experienced by specific populations, such as the aging workforce, ethnic/racial minorities with disabilities, and people with particular types of disabilities, are also discussed. This chapter also includes discussion of some current controversies that scholars, policymakers, and advocates struggle with in their respective work to improve employment outcomes for people with disabilities, including conflicting policy incentives, the extent of employer efforts at inclusiveness versus litigation-avoidance, and equal opportunity versus quota requirements. We end this chapter with a discussion of possible solutions to address continuing challenges.

    In Chapter 3, Chronology of Critical Events, we trace the legislation, systems formulation, public policies, and changing philosophical approaches that have etched their mark into the landscape of employment and work for people with disabilities over the past six centuries, from the 1500s to the present time.

    In Chapter 4, Biographies of Key Contributors in the Field, we provide information on 40 of the scholars, policymakers, and disability advocates who have been instrumental thinkers and leaders in shaping our understanding of the employment status of people with disabilities, and also in creating public policies which address the employment disparities we are confronted with. Biographical sketches and selected key writings are provided for each person.

    In Chapter 5, Annotated Data, Statistics, Tables, and Graphs, we provide information on employment and disability data sources, and how disability and employment are defined across a number of national survey and administrative data sources. We discuss employment and economic disparities, including U.S. employment rates over time, international employment rates, income and earning disparities, and resulting higher poverty levels for people with disabilities. In this chapter, we also provide information on where people with disabilities work, in terms of occupation, class of jobs, and industries. Workplace discrimination information is provided through the U.S. Equal Employment Opportunity Commission's charge data on disability employment discrimination, comparing it to rates of employment discrimination charges under laws affording protections on the basis of age, gender, and race/ethnicity. We end this chapter with information about statistics available on who is out of the workforce, including those displaced through occupational illness and injury and now on workers' compensation; those on public benefits because of disability, such as Social Security Disability Insurance (SSDI) and Social Security Insurance (SSI); and those receiving vocational rehabilitation (VR) services through state agencies.

    Chapter 6, Annotated List of Organizations and Associations, and Chapter 7, Selected Print and Electronic Resources, include extensive reference material to afford the reader ample opportunity for further research on select topics, as their interests might lead them. In these chapters, we provide a brief description, contact information, and Web sites for almost 200 organizations and associations, and 100 print and electronic resources.

    It is our hope that this volume will contribute to the thinking of college and university students, people with disabilities and their advocates and family members, and the general public about the importance of work for people with disabilities. Without employment, many of us do not have the means to live independently, and often feel—if we are not in fact—alienated from the mainstream of American life. Meaningful work, where we are fairly compensated and valued as a contributing member of a work unit and of society more broadly, not only contributes to the American economy, but contributes to our sense of self and self-worth. Everyone deserves to have the opportunity to be an active part of the American workforce. This volume is about how we can make that dream a reality for people with disabilities in America and around the world.

    Acknowledgments

    An effort such as this volume in the SAGE Reference Series on Disability requires the significant work of many people to bring about a successful outcome. We would like to thank Gary Albrecht, series editor, and Jim Brace-Thompson, senior editor at Sage Reference, for their vision, and our publishers at SAGE for conceptualizing and shepherding this series to completion. We would also like to thank Kevin Hillstrom and Laurie Collier Hillstrom of Northern Lights Writers Group for their excellent editorial support and for helping us make sure that our volume aligned with and added value to the overarching series.

    Support for our time to contribute to this series has been funded by a grant from the U.S. Department of Education National Institute on Disability and Rehabilitation Research (NIDRR) to Cornell University for a Rehabilitation Research and Training Center on Employment Policy and Individuals with Disabilities (Grant No. H133B040013). Our thanks go to our NIDRR Project Director, David Keer, for his ever-supportive and collegial guidance and encouragement.

    Closer to home, we would like to acknowledge the contributions of many of our Cornell University ILR School and Employment and Disability Institute (EDI) colleagues whose writing, research, and knowledge added insight and content to this volume.

    Sarah von Schrader and Bill Erickson, researchers from the Employment and Disability Institute, drew upon their robust expertise in disability statistics and national survey and administrative data sets to provide the material presented in Chapter 5, Annotated Data, Statistics, Tables, and Graphs. Their contribution to this volume enables us to provide the reader with up-to-date information on available employment and disability data sources, employment and economic disparities, where people with disabilities work, workplace discrimination, and data detailing who is in and out of the workforce due to disability.

    Thomas Golden, Associate Director of the Employment and Disability Institute, has long-standing expertise in Social Security benefits, as well as employment and disability public policy more broadly. He added substantive insights on legislative history and contemporary public policy issues as well as overall contextual structure to our Chapter 1, Introduction, Background, and History.

    Arun Karpur, EDI research associate, whose specialties include epidemiological research and program evaluation, contributed on the topics of health care policy and employer wellness practices.

    Sara Furguson, Cornell University student research associate, assisted us in identifying events for inclusion for our Chapter 3, Chronology of Critical Events, as well as the related associations and information resources provided in Chapter 6, Annotated List of Organizations and Associations, and Chapter 7, Selected Print and Electronic Resources.

    Margaret Waelder, EDI administrative and research assistant, was of great assistance in tracking down information on individual experts' publications included in our Chapter 4, Biographies of Key Contributors in the Field.

    Melissa Bjelland, EDI economist and researcher, provided excellent technical editing assistance on final versions of our work. Kevin Hallock, Joseph R. Rich '80 Professor and Director of the Institute for Compensation Studies, offered guidance on the topic of pay gaps.

    Finally, our sincerest thanks must go to Nancy Elshami and Sara VanLooy, research assistants from the Employment and Disability Institute and the Institute for Compensation Studies, who were our partners and collaborators throughout this process, helping us to conduct literature reviews and identify needed references, and providing excellent overarching editorial support.

    Without these terrific colleagues, this effort would not have been possible, and we are most grateful for their substantive assistance.

    Susanne M.Bruyère and LindaBarrington

    About the Authors

    Susanne M. Bruyère, Ph.D., CRC, is currently Professor of Disability Studies, Director of the Employment and Disability Institute, and Associate Dean of Outreach at the Cornell University ILR (Industrial and Labor Relations) School in Ithaca, New York.

    Dr. Bruyère is currently Project Director and Co-Principal Investigator of numerous federally sponsored research, dissemination, and technical assistance efforts focused on employment and disability policy and effective workplace practices for people with disabilities, including the U.S. Department of Labor Office of Disability and Employment Policy National Technical Assistance, Policy, and Research Center for Employers on Employment of People with Disabilities; the Rehabilitation Research and Training Center on Employer Practices to Improve Employment Outcomes for Persons with Disabilities; and Organizational Practices to Increase Employment Opportunities for People with Disabilities: The Power of Social Networks. She is a past president of the American Rehabilitation Counseling Association, National Council on Rehabilitation Education, and Division of Rehabilitation Psychology (22) of the American Psychological Association, and past Chair of GLADNET (the Global Applied Disability Research and Information Network on Employment and Training) and the CARF (Committee on Accreditation of Rehabilitation Facilities) Board of Directors.

    Dr. Bruyère holds a doctoral degree in Rehabilitation Psychology from the University of Wisconsin-Madison. She is a Fellow in the American Psychological Association, a member of the National Academy of Social Insurance, and currently serves as an Executive Board Member of the Division of Rehabilitation Psychology (22) of the American Psychological Association.

    Linda Barrington, Ph.D., is Managing Director of the Institute for Compensation Studies (ICS) in the ILR School at Cornell University. ICS is an interdisciplinary initiative that analyzes, teaches, and communicates broadly about monetary and nonmonetary rewards from work.

    Dr. Barrington's work appears in the Review of Economics and Statistics, the Journal of Economic History, and the Historical Statistics of the U.S., as well as in numerous business/practitioner reports. She is editor and contributing author to The Other Side of the Frontier: Economic Explorations into Native American Economic History.

    Dr. Barrington has received underwriting for her research from various sources, including the Atlantic Philanthropies, Rockefeller Foundation, Russell Sage Foundation, Gates Foundation, and most recently the U.S. Department of Education's National Institute on Disability and Rehabilitation Research.

    Dr. Barrington comes to the Institute for Compensation Studies from The Conference Board, a global business membership and research organization. There, she held several positions over the past 10 years, including economist, special assistant to the CEO, research director, and most recently Managing Director of Human Capital. Prior to The Conference Board, Dr. Barrington served on the economics faculty at Barnard College of Columbia University. There she published several articles on gender economics, poverty measurement, and economic history.

    Dr. Barrington earned a Ph.D. in economics from the University of Illinois, and a B.S. in economics from the University of Wisconsin.

    About the Series Editor

    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 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

    ACASee Affordable Care Act of 2010 (ACA)

    Accommodation A modification or adjustment to a job or work environment that enables a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions.

    ACSSee American Community Survey (ACS)

    ADASee Americans with Disabilities Act of 1990 (ADA)

    ADEASee Age Discrimination in Employment Act of 1967 (ADEA)

    Affirmative Businesses Community-based employment training settings that are owned and operated by a Community Rehabilitation Program (CRP) and provide an intermediate employment step to competitive or individualized supported job placement for people with disabilities.

    Affordable Care Act of 2010 (ACA) Also known as the Patient Protection and Affordable Care Act, this sweeping health care reform legislation requires that all Americans have health insurance; bars health insurance companies from discriminating based on pre-existing medical conditions, health status, or gender; prohibits lifetime limits on coverage; prohibits rescission (dropping) of customers by insurers; creates insurance exchanges; requires employers with 50 workers or more to offer health insurance benefits or pay a fee; expands Medicaid and provides premium assistance; and creates temporary insurance pools for consumers with pre-existing conditions until insurance exchanges open in 2014.

    Age Discrimination in Employment Act of 1967 (ADEA) Legislation that prohibits discrimination in hiring, promotion, wages, termination, and other conditions of employment for persons aged 40 or older in the United States.

    American Community Survey (ACS) A continuous data collection effort conducted by the U.S. Census Bureau that is used to produce annual estimates at the national, state, and local levels on the characteristics of the United States population.

    Americans with Disabilities Act of 1990 (ADA) A sweeping civil rights law that prohibits discrimination against people with disabilities in employment, public transportation, public accommodations, and telecommunications, and requires employers to provide “reasonable accommodations” for employees with disabilities. Under Title I of 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” or are “regarded as having such an impairment.”

    Annual Social and Economic Supplement to the Current Population Survey (CPS-ASEC) A national survey conducted by the Bureau of the Census in March each year that collects data in addition to the monthly CPS; it utilizes a single disability screener question identifying what is referred to as a “work limitation disability.”

    Any Annual Employment A definition of employment that includes anyone who worked at least 52 hours anytime in a year (working an hour a week throughout the year or just one intense 52-hour work week in a whole year count the same).

    Charge Data Records of individuals' claims, filed with the Equal Employment Opportunity Commission or a state or local Fair Employment Practices Agency, charging that an employers' actions violate the Americans with Disabilities Act (ADA) or other civil rights statutes that cover the employment of protected groups.

    Civil Rights Act of 1964, Title VII Title VII prohibits employment discrimination on the basis of race, color, religion, sex, and national origin.

    Community Rehabilitation Program (CRP) Nongovernmental organizations that facilitate employment of people with disabilities through a range of work-related services and serve as a catalyst in the supply/demand employment matching process.

    Compensation Remuneration received for work, including wages and salaries as well as benefits such as health care, paid vacation, or unemployment taxation.

    CPSSee Current Population Survey (CPS)

    CPS-ASECSee Annual Social and Economic Supplement to the Current Population Survey (CPS-ASEC)

    CRPSee Community Rehabilitation Program (CRP)

    Current Population Survey (CPS) A monthly survey of about 50,000 households conducted by the Bureau of the Census for the Bureau of Labor Statistics; it is the primary source of labor force statistics for the U.S. civilian noninstitutionalized population.

    Customized Employment A process of finding an individual match between employee and employer. The skills and interests of an individual are matched with the employer's business needs, and a job may be customized or personalized to suit both parties.

    Disability Disability is a complex and multi-dimensional concept. National surveys have often been used to assist in identifying the population of people with disabilities; the disability definition included in these surveys varies. Currently, the major noninstitutional surveys in the United States (the American Community Survey, the National Health Interview Survey, and the Survey of Income Program Participation) all elicit information on sensory impairments, functional limitations, mental disabilities, limitations in activities of daily living (ADLs) or instrumental activities of daily living (IADLs), and work disabilities. People who report having one of these impairments or limitations are counted as “disabled” in these surveys. In 1965 Saad Nagi proposed a model of disability as a social construct, which views disability as an interaction between a person's health condition and the physical and social environment—making disability a function of society. Disability, under this paradigm, is a mismatch between an individual's abilities and the demands of the environment in which the individual lives and works. The World Health Organization (WHO) is working to reframe how disability is defined, more consistent with a social rather than a medical model of disability and impairment. The result has been the International Classification of Functioning, Disability, and Health (ICF), which includes measures of community participation and inclusion, rather than just impairment, in the model.

    Disability Management A workplace program that seeks to reduce the impact of injury and disability and to accommodate employees who experience functional work limitations; the term captures activities ranging from proactive injury prevention to return-to-work interventions, all aimed at improving work outcomes for individuals and profitability for employers.

    Discouraged Worker A person considered “marginally attached” to the workforce who reports that he/she did not look for work recently because he/she believes there are no jobs available.

    Earned Income Tax Credits (EITC) Tax credits for low-income workers, intended to provide an incentive to work.

    EEOCSee Equal Employment Opportunity Commission (EEOC)

    EITCSee Earned Income Tax Credits (EITC)

    Employment Process The various steps involved in being hired for a particular position that is appropriate to one's skills and abilities.

    Employment Rate Also known as the employment-to-population ratio, this figure is the number of employed people in a given group divided by the total number of people in that same group; the rate is calculated across all persons: those working, those actively seeking employment, and those neither employed nor seeking work.

    EPASee Equal Pay Act of 1963 (EPA)

    Equal Employment Opportunity Commission (EEOC) The U.S. federal government agency responsible for enforcing and interpreting several pieces of anti-discrimination legislation in the employment sector, including the Americans with Disabilities Act.

    Equal Pay Act of 1963 (EPA) A law that prohibits employers from discriminating on the basis of sex by paying lower wages to employees of one gender than it pays to employees of the other gender within the same establishment for equal work at jobs that require equal skill, effort, and responsibility, and that are performed under similar working conditions.

    Executive Order 11246 Signed by President Lyndon Johnson in 1965, it requires employers who are federal contractors and subcontractors to take “affirmative action” to recruit and advance qualified minorities, women, persons with disabilities, and covered veterans.

    Executive Order 13078 Signed by President Bill Clinton in 1998, it required the federal government to develop an accurate and reliable measure of the employment rate of people with disabilities, and to publish this figure as frequently as possible.

    Fair Employment Practice Agency (FEPA) Agencies responsible for enforcing state and local laws prohibiting employment discrimination.

    Fair Labor Standards Act (FLSA) The federal regulatory policy that most broadly defines the rules for employment of people in the United States, including standards for wages (e.g., minimum wage) and work hours (e.g., 40-hour work week).

    Fair Wages for Workers with Disabilities Act of 2011 Proposed legislation that would repeal Section 14(c) of the Fair Labor Standards Act; the new law would continue to allow organizations employing majority workforces of people with disabilities to be eligible for set-aside contracts, but it would no longer allow them to pay employees with disabilities below minimum-wage standards.

    Family and Medical Leave Act of 1993 (FMLA) A law that establishes, for employers with 50 or more employees, a minimum labor standard with regard to leaves of absence for family or medical reasons. Under the FMLA, an eligible employee may take up to 12 work weeks of leave during any 12-month period due to a serious health condition that makes the employee unable to perform one or more of the essential functions of his or her job, or due to the employee's need to care for a spouse, son, daughter, or parent with a serious health condition.

    FEPASee Fair Employment Practice Agency (FEPA)

    FLSASee Fair Labor Standards Act (FLSA)

    FMLASee Family and Medical Leave Act of 1993 (FMLA)

    FT/FYSee Full-Time/Full-Year Employment (FT/FY)

    Full-Time/Full-Year Employment (FT/FY) A strict definition of employment that includes only full-time year-round workers (those who work at least 35 hours a week and 50 or more weeks per year).

    Function The normal physiological action or activity of a body part, organ, or system.

    GQSee Group Quarters (GQ)

    Group Quarters (GQ) Institutions housing large numbers of people, such as nursing homes and prisons; residents are not included in U.S. employment statistics, whether they are actively working or not.

    Impairment A biomedical, underlying functional condition that is intrinsic to a person and constitutes the essential health component of 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).

    Labor Force Participation Rate The number of persons “in the labor force” divided by the number of persons in the population. The labor force includes people who have a job, who are on layoff, or who actively searched for work in the last four weeks.

    Management Directive 715 (MD-715) An Equal Employment Opportunity Commission policy that took effect on October 1, 2003, and set standards for establishing and maintaining an effective affirmative action program for the hiring, placement, and advancement of people with disabilities in the federal sector.

    Marginally Attached The relationship to the labor force of an individual who reports wanting a job, being available to work, and having looked for a job in the past 12 months but not during the four weeks immediately preceding the survey.

    MD-715See Management Directive 715 (MD-715)

    National Health Interview Survey (NHIS) A cross-sectional household interview survey that is the primary data source on the health of the civilian, noninstitutionalized population of the United States. It collects information to track health status, health care access, and progress toward achieving national health objectives and displays results based on socio-economic and demographic characteristics.

    NHISSee National Health Interview Survey (NHIS)

    Occupational Safety and Health Act of 1970 (OSHA) A U.S. law designed to protect the rights of employees to working conditions that are safe, healthful, and free of recognized hazards.

    OFCCPSee Office of Federal Contract Compliance Programs (OFCCP)

    Office of Federal Contract Compliance Programs (OFCCP) A section of the U.S. Department of Labor responsible for enforcing the contractual obligations relating to affirmative action and equal employment opportunity required of those who do business with the federal government.

    OSHASee Occupational Safety and Health Act of 1970 (OSHA)

    Person-Centered Planning An approach used to help people with disabilities plan for their futures. People with disabilities are put in charge of defining their own direction and choosing their own pathways based on their personal attributes, gifts, and talents. They are supported in accomplishing their goals by a team of individuals who care about them and help them to figure out where they want to go and how best to get there.

    Poverty A measure that compares the sum of total income from each family member living in the household to the appropriate poverty threshold given the household's composition. Poverty thresholds are adjusted to take account of the size of the family, the age of the householder, and the number of related children under the age of 18.

    Preferential Hiring Employment programs required by federal statutes and regulations designed to remedy discriminatory practices in hiring minority group members. These programs are intended to eliminate existing and continuing discrimination, to remedy lingering effects of past discrimination, and to create systems and procedures to prevent future discrimination. They are commonly based on population percentages of minority groups in a particular area and take into consideration such factors as race, color, sex, creed, and age.

    Quota A specific number of members of a particular group that an employer is legally obligated to employ, or a certain percentage of that group that must be represented in the workforce.

    Reasonable Accommodation Under the Americans with Disabilities Act, reasonable accommodation is any modification or adjustment to a job, an employment practice, or the work environment that makes it possible for a qualified individual with a disability to apply for, perform the essential functions of, and enjoy equal benefits and privileges of employment.

    Reference Period Employment A definition of employment that includes respondents who report having worked at all during a certain period, such as the most recent week, the past two weeks, or the past month (depending on the survey).

    Rehabilitation Act of 1973 A U.S. law that prohibits discrimination on the basis of disability in federal agencies, programs, and employment, as well as in state and private programs that receive federal funding.

    Relative Employment Ratio A figure derived by dividing the employment rate of persons with disabilities by the employment rate of those without disabilities.

    Schedule A An exception to the usual federal hiring process provided by the U.S. Office of Personnel Management that allows a job to be filled noncompetitively by a person who is disabled and has a certification letter from a State Vocational Rehabilitation Office or the Department of Veterans Affairs.

    Service-Connected Disability A disability that has been determined by the Department of Veterans Affairs (VA) to be the result of disease or injury incurred or aggravated during military service.

    Set-Aside Contracts Government contracts that have been exempted from the normal competitive bid process and reserved to award to “worthy organizations” that employ a majority of individuals with disabilities.

    Sheltered Employment A form of employment in which individuals with disabilities are effectively removed from the general labor force and put into “protective environments” where the demands of competitive employment are minimized. Sheltered workplace businesses create goods and services that are sold in the marketplace, but often through specific contractual or outsourcing agreements with local businesses or government agencies. Many of these work environments have 14(c) wage certificates allowing them to pay sub-minimum wage.

    SIPPSee Survey of Income and Program Participation (SIPP)

    Social Security Disability Insurance (SSDI) A federal government program that provides wage replacement income for individuals who have worked and paid Social Security taxes and become disabled according to Social Security criteria; its benefits are paid to disabled workers, their widows, widowers, and children, and eligible adults disabled since childhood.

    SSDISee Social Security Disability Insurance (SSDI)

    SSISee Supplemental Security Income (SSI)

    Supplemental Security Income (SSI) A federal government income supplement program that is designed to help low-income people who are elderly, blind, or disabled meet their basic needs for food, clothing, and shelter. It does not require that an individual have previously worked and paid Social Security taxes.

    Supported Employment A form of employment in which individuals with disabilities are fully integrated within a competitive work environment, with supports of various sorts (i.e., a job coach, specialized training, transportation, or assistive technology) provided by specially trained Community Rehabilitation Program personnel.

    Survey of Income and Program Participation (SIPP) A survey conducted by the Bureau of the Census to collect income data, labor force information, program participation and eligibility data, and general demographic characteristics to measure the effectiveness of existing federal, state, and local programs and to provide improved statistics on the distribution of income and measures of economic well-being in the United States.

    Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) A federal government program intended to help pave avenues to employment for people with disabilities by eliminating work disincentives; it allows people with disabilities to join the workforce without fear of losing their Medicare or Medicaid coverage.

    TWWIIASee Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA)

    Unemployment Rate The number of unemployed persons divided by the number of persons determined to be in the labor force.

    United Nations Convention on the Rights of People with Disabilities Adopted in 2006 and put into effect on May 3, 2008, this international agreement reaffirms state parties' responsibility to take the appropriate measures to support persons with disabilities in order for them to “attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.”

    U.S. Department of Labor's Employment Training Administration (USDOLETA) The agency that administers federal government job training and worker dislocation programs, federal grants to states for public employment service programs, and unemployment insurance benefits; it has designed several initiatives to build the capacity of its Workforce Development System to support job seekers with disabilities.

    USDOLETASee U.S. Department of Labor's Employment Training Administration (USDOLETA)

    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.

    VRSee Vocational Rehabilitation (VR)

    Wage Gap A disparity or difference in pay between two different groups.

    WIASee Workforce Investment Act of 1998 (WIA)

    Work Limitation A determinant of disability status used by the Annual Social and Economic Supplement of the Current Population Survey (CPS-ASEC); it asks whether respondents have a health problem or disability which prevents them from working or which limits the kind or amount of work they can do.

    Work Opportunity Tax Credits A federal tax incentive provided to private-sector businesses that hire employees from nine groups that have historically been discriminated against, including long-term welfare recipients, veterans, residents of certain communities, ex-felons, and vocational rehabilitation program referrals.

    Workers' Compensation Programs Government-sponsored, employer-financed systems for compensating employees who incur an injury or illness in connection with their employment.

    Workforce Investment Act of 1998 (WIA) Legislation that created a “One–Stop” system of job services and employment training to serve every job seeker, with or without a disability, through a central location that provides access to multiple programs.

    Workplace Experience What happens once an employee is on the job.


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