Disability Through the Life Course

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Edited by: Tamar Heller, Sarah Parker Harris & Gary L. Albrecht

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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

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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 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

    Much of the literature on disability focuses on a specific phase of life. Rarely does the literature on childhood merge with that on adulthood or on older age. Yet there is growing recognition that a life course approach, which addresses disability across generations and through various life stage transitions, informs and furthers our understanding of disability. This approach assumes that, beginning prenatally, events occurring early in life affect later periods in one's life. It recognizes that development does not necessarily proceed in neat stages; rather, in a fluid and dynamic manner, impairments interact with social determinants (e.g., culture and socioeconomic status) and environmental aspects (e.g., services and supports) across the life course, resulting in differing outcomes for people. In this book, the disability studies approach adds to this life course perspective by bringing in the concepts of disability identity and societal attitudes toward disability as important factors throughout the lives of people with disabilities. The disability studies lens further emphasizes the lived experience of people with disabilities and the social and political contexts affecting their lives.

    In addition to providing an overall theoretical and historical background, this book addresses disability across the life course through delineation of various age phases and key cross-cutting, lifelong issues that impact the lives of people with disabilities. We discuss disability considerations, challenges, and supports at six life stages: birthrights and early childhood; childhood; youth; adulthood; aging; and death and dying. We also include transition periods, which can often be particularly challenging to individuals with disabilities and their families. The key cross-cutting issues that we highlight are: family; health; policy, legislation, and service; and self-determination and participation. These themes offer a useful contextualization of the lives of people with disabilities. They also encompass key debates within the field of disabilities that center around the challenges people with disabilities face, the worth and value of human life, and ways to promote and respect human rights for all people.

    Chapter 1 provides an introduction to the life course approach. It introduces key concepts, life stages, and important historical developments in approaches to disability. While the medicalization of disability has dominated much of the discussion of disabilities historically, the chapter also covers more recent approaches, such as the human rights approach. It then provides examples of different theoretical approaches to life course studies from various disciplinary traditions, including gerontology, developmental psychology, sociology, and disability studies. The application and limitation of stage theories and theories of “successful aging” to people with disabilities are discussed. Finally, the chapter introduces the cross-cutting issues that affect the lives of people with disabilities throughout the life course, including the role of families, age-related health changes, federal legislation that has had a major impact on people, and the importance of promoting self-determination and community participation as valued goals.

    Chapter 2 delves into challenges, debates, and policies and practices that address issues faced by people with disabilities and their families across each generational stage. From the prenatal period to the end of life, debates center around the value of life and ways to obtain and maintain a high quality of life. Many people with disabilities face challenges, including societal discrimination, poverty, inaccessible environments, and lack of opportunities to lead self-determined lives and to meaningfully participate in community life. Inadequate access to health care and to trained health-care professionals and direct-support professionals pose further barriers. Transitions are often particularly difficult, as expectations and roles change and as support networks and systems change. Family involvement and support is critical throughout the life course. People with disabilities not only receive support from their families but also provide support to their families. A key to reducing the challenges and barriers discussed in the chapter is the enactment of effective legislative policies, services, and supports that promote the health, education, employment, and community participation of people with disabilities and their families.

    Chapter 3 provides a chronology of events that pertain to disabilities across the life course. The period covered is 1900 to 2010. Key events include discoveries, enactment of important legislation, significant speeches and publications, and the founding of major disability organizations. With each of these landmark events, we provide a synopsis of the event and its implications for people with disabilities. These events illustrate historical developments from the eugenics movement that sought to prevent the procreation of people with disabilities to the enactment of legislation that provided civil rights to people with disabilities. Events such as the growth of the independent living and self-advocacy movement have further helped to foster the self-determination of people with disabilities.

    Chapter 4 provides biographies of individuals who have made significant contributions to the study of disability issues. We profile their lives and the impact they have made on the field. Some of these individuals have been leaders in articulating a life course approach to the study of disabilities, while other individuals selected have focused on particular age phases. Many of the individuals have focused on one of the cross-cutting issues addressed in this book.

    Chapter 5 comprises annotated data, statistics, tables, and graphs pertinent to disabilities across the life course. It is organized by age phases and covers the key issues embedded in each of these phases. Key statistics pertaining to early childhood through adolescence include data on birthrights, education, peer networks, and sexuality. In adulthood and aging, the data address employment, parenting, retirement, long-term care and support, end-of-life issues, and spirituality.

    Chapter 6 provides a listing and description of key governmental and non-governmental organizations that impact the lives of people with disabilities. These include key organizations responsible for funding and administering services, supports, and research regarding people with disabilities and their families. They also include consumer organizations, such as family organizations and self-advocacy organizations, controlled by people with disabilities. Key provider agencies and university centers are also listed as important organizations in the disability field.

    The last chapter, Chapter 7, comprises an annotated list of print and electronic resources. The selected resources reflect written publications that have been seminal in articulating various aspects of the life course and disability studies perspectives on the lives of people with disabilities. Some of the publications address specific age phases and others address the cross-cutting issues detailed in Chapters 1 and 2.

    A life course perspective helps us understand the developmental trajectories for people with disabilities and their families. The topic of disability across the life course is challenging, as it brings together literature from different disciplines addressing different aspects of the life cycle. It also encompasses various disabilities, including physical, sensory, cognitive, and mental health disabilities. However, understanding disability across the life course is vital if people with disabilities and their families are to achieve a good quality of life and participate in the wider community.

    The enormous task of bringing together the disparate literature would not have been possible without the tremendous work of the graduate students in the Department of Disability and Human Development (DHD) at the University of Illinois at Chicago, who worked diligently on this book. DHD has the foremost disability studies graduate program in the United States, including both a master's program in disability and human development and a doctoral program in disability studies. Two students in the master's program were Jeannie Zwick, who compiled the initial readings and did much of the work that went into Chapters 4, 6, and 7, and Robert Gould, who took the lead in compiling Chapters 3 and 5. Abigail Schindler and Lieke van Heumen, doctoral students in disability studies, skillfully contributed major sections to the chapters. Abigail Schindler did a remarkable job of combing through the disparate literature to pull together the various perspectives on life course approaches and cross-cutting issues in Chapters 1 and 2. Lieke van Heumen very thoughtfully brought her expertise in gerontology to sections on aging and on death and dying in Chapter 2.

    We would like to acknowledge funding provided, in part, by the National Institute on Disability and Rehabilitation Research, Rehabilitation Research and Training Center on Aging with Developmental Disabilities: Lifespan Health and Function, grant number H133B080009. Finally, we would like to thank our spouses, Robert Heller and Germaine Harris, who supported us throughout this project.

    TamarHellerSarah ParkerHarris

    About the Authors

    Tamar Heller, Ph.D., is a professor and head of the Department of Disability and Human Development, University of Illinois at Chicago, and director of its University Center for Excellence in Developmental Disabilities for the State of Illinois. She also directs the Rehabilitation Research and Training Center on Aging with Developmental Disabilities: Lifespan Health and Function and projects on family support and health promotion interventions for individuals with disabilities. One of these projects is the Special Olympics Research Collaborating Center.

    Dr. Heller has written over 170 publications and presented numerous papers at major conferences on family support interventions and policies, self-determination, health promotion, and aging of people with disabilities. She is the author or co-editor of five books and has edited special issues of Technology and Disability, American Journal on Mental Retardation, Journal of Policy and Practice in Intellectual Disabilities, and Family Relations. She is past president of the board of the Association of University Centers on Disabilities. In 2005 she was then Senator Barack Obama's delegate to the White House Conference on Aging. As a co-founder of the national Sibling Leadership Network, she is a member of its executive board.

    Dr. Heller's awards include the 2009 Autism Ally for Public Policy Award of The Arc/The Autism Program of Illinois; the 2008 Lifetime Research Achievement Award, International Association for the Scientific Study of Intellectual Disabilities, Special Interest Group on Aging and Intellectual Disabilities; and the 2009 Community Partner Award of Community Support Services.

    Sarah Parker Harris, Ph.D., is an assistant professor in the Department of Disability and Human Development, University of Illinois at Chicago. She received her doctoral degree in sociology and social policy from the University of Sydney in Australia, and has worked in social policy research primarily relating to disability policies and programs. Dr. Parker Harris has published papers and presented at major national and international conferences on international rights, neoliberalism, citizenship, comparative workfare policy, and social entrepreneurship.

    Dr. Parker Harris has taught undergraduate and graduate courses in sociological theory, feminist theory, qualitative research methods, and comparative social policy. She currently teaches graduate courses in theories and perspectives of disability studies, and disability policies and legislation. Her research interests include comparative social policy analysis; international and national disability policies and legislation; international human rights; citizenship and social justice; and issues relating to gender, sexuality, and disability. Recent research includes a cross-national project analyzing human rights, neoliberalism, and workfare programs for people with disabilities in three countries; an interdisciplinary study examining the role of social entrepreneurship as an innovative pathway to employment for people with disabilities; and a community-based project on using advocacy and technology to increase civic engagement of people with disabilities.

    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, Sweden, South Africa, 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

    ACIPSee Advisory Committee on Immunization Practices

    Activities of Daily Living (ADL) A term used in health care to describe daily self-care tasks such as feeding, bathing, dressing, or communicating. The ability to perform ADLs provides a measurement of an individual's levels of disability and functioning.

    ADASee Americans with Disabilities Act of 1990

    ADAAASee Americans with Disabilities Act Amendments Act of 2008

    ADLSee Activities of Daily Living

    Advisory Committee on Immunization Practices (ACIP) A group of experts selected by the Secretary of the U.S. Department of Health and Human Services that develops recommendations—based on scientific data, safety and efficacy, and cost-effectiveness—regarding which vaccines children and adolescents should receive, and their dosing intervals.

    Aging and Disability Resource Centers Funded by the Administration on Aging, these centers provide a coordinated system of long-term supports and services for disabled and elderly individuals in the United States and promote health and long-term care initiatives that benefit both groups.

    Aging Well An adaptation of the successful aging model that views aging as a lifelong process, dependent on events occurring at younger ages. It defines positive outcomes as (1) maintaining health and function (physical and mental health and independence); and (2) active engagement with life (friendships, contributions to society, and community participation).

    Aging With Disability A term used to describe people with early-onset disabilities as they grow older, as opposed to people who have mid- or late-life onset of disability (who are said to have “disability with aging”).

    Americans with Disabilities Act Amendments Act of 2008 (ADAAA)

    Passed in response to judicial interpretations that narrowed the scope of the ADA, this law reestablished the broad range of impairments that qualify as a disability and confirmed that mitigating measures should not be considered in determining whether a person's impairment qualifies as a disability.

    Americans with Disabilities Act of 1990 (ADA) This sweeping civil rights law prohibits discrimination against people with disabilities in employment, public transportation, public accommodations, and telecommunications. Under Title 1 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.”

    Assistive Technology (AT) This term describes a variety of devices and strategies that serve to increase the independence and community participation of people with disabilities by aiding them with seating and mobility, communication, access, environmental control, or activities of daily living.

    ATSee Assistive Technology

    Caregiver Burden A concept that applies to stress, financial hardship, perceived inequity in the division of labor, and other factors experienced by people who care for family members with disabilities.

    Cash and Counseling A consumer-directed Medicaid policy that disburses funds to people with disabilities through monthly cash subsidies in conjunction with counseling services, with the goal of fostering greater autonomy and choice.

    CFCSee Community First Choice Option

    Chronic Sorrow Coined in the 1960s, this term describes the reaction of parents to the diagnosis of disability in a child as a form of long-lasting grief.

    CLASSSee Community Living Assistance Services and Supports

    Cognitive Development A theory advanced by educator Jean Piaget that says children progress through four stages of increasingly sophisticated cognitive ability—sensorimotor, preoperational, concrete, and formal operational—which are finalized by the end of adolescence.

    Community First Choice (CFC) Option A Medicaid program, available to states as a waiver option, that provides home- and community-based attendant services and supports for activities of daily living to individuals with disabilities who meet income requirements and who would otherwise require an institutional level of care.

    Community Living Assistance Services and Supports (CLASS) Established under the Patient Protection and Affordable Care Act (PPACA), this voluntary national long-term care insurance program provides individuals with a cash benefit if they have functional limitations or disability.

    DALYSee Disability-Adjusted Life Years

    Developmental Stages An influential concept in developmental psychology and pediatrics that says children progress through a universal sequence of cognitive, social, and personality development.

    Disability An evolving concept that results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.

    Disability Rights Movement An advocacy movement that began in the 1970s, drawing upon earlier successes of the civil rights and women's liberation movements. It was instrumental in pressuring Congress to adopt various disability policies and laws.

    Disability Studies A diverse, interdisciplinary academic field that examines the social, cultural, and political implications of disability.

    Disability With Aging A term used to describe people who develop disabilities as they reach mid- or late life, as opposed to people with early onset disabilities who grow older (who are said to be “aging with disability”).

    Disability-Adjusted Life Years (DALY) A summary measure created by the World Health Organization (WHO) to represent the burden of disease in terms of years of life lost due to either disability or premature death.

    Dismodernism A concept of identity development that acknowledges the interdependent nature of humanity and the universal experiences of bodily limitation.

    Early Intervention Educational programs that target children from birth to three years old and are designed to improve the children's developmental, social, and learning outcomes; such programs often include speech and language therapy, physical therapy, occupational therapy, and social work.

    Elementary and Secondary Education Act of 1965 (ESEA) This legislation funded educational programs for economically disadvantaged children and children with disabilities in both elementary and secondary schools, as well as Head Start and Title I programs; in 2001 it was reauthorized as No Child Left Behind (NCLB).

    Emerging Adulthood A phase distinct from both adolescence and young adulthood that occurs predominantly in industrialized societies and is marked by exploration of social and economic roles without definite commitment, as made evident by factors such as occupational instability and residential mobility.

    ESEASee Elementary and Secondary Education Act of 1965

    Eugenics Movement A form of social Darwinism that sought to promote “genetic purity” by preventing “inferior” people, including individuals with disabilities, from having children.

    Fair Housing Act Amendments of 1988 Legislation that provided individuals with disabilities with protection against discrimination in housing, the right to make reasonable modifications to rented housing, and the right to accommodations in housing rules, policies, and practices.

    Family Demography The study of the ties that bind people and households together in family units, conducted with the goal of better understanding the behavior of both individuals and society.

    Family Systems Health Model A normative, preventative model for the assessment and intervention of families who face the caregiving demands of chronic disorders over time. The model outlines three dimensions: psychosocial types, major phases in their natural history, and family systems variables.

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

    Genetic Engineering Direct human manipulation and alteration of an organism's genetic material in a manner that does not occur naturally.

    Gerontology The scientific study of aging, which takes into account biological and cultural perspectives, lifespan changes in allocation of resources, systematic theory of adaptive psychological aging, and theories of psychological aging in specific domains.

    Herd Immunity The fact that unvaccinated individuals indirectly benefit from vaccinated individuals, because those who are vaccinated prevent the transmission of disease within the entire population.

    Home and Community-Based Services Program A consumer-directed Medicaid program that offers people with disabilities and their families such services as home modification, case coordination, respite, pre-vocational and educational habilitation, and supported employment.

    ICFSee International Classification of Functioning, Disability and Health

    I/DDSee Intellectual and Developmental Disabilities

    IDEASee Individuals with Disabilities Education Act of 1990

    Identity A term that may refer to an individual's core characteristics (personal identity) or definition of self in relation to others (social identity).

    Idiographic Development A psychological approach that involves gathering information that is unique to an individual's development instead of measuring that individual's adherence to or deviance from a common construct or norm.

    IEPSee Individualized Education Program

    IFSPSee Individualized Family Service Plan

    Impaired Role A modification of the sick role that applies to individuals whose condition is unlikely to change, as in the case of a permanent disability. Individuals within this group are expected to live up to normal societal expectations, within the limitations of their impairment, and to make the most of their situation.

    Impairment Any loss, abnormality, or disturbance of psychological, physiological, or anatomical structure or function that interferes with normal activities and may be temporary or permanent.

    Individualized Education Program (IEP) Mandated by the Individuals with Disabilities Education Act (IDEA), the IEP documents and guides the process of identifying and referring eligible school-age children for special education services, assessing their needs, planning and implementing individualized programs to meet their needs, and monitoring and evaluating the programs' effectiveness.

    Individualized Family Service Plan (IFSP) Mandated by the Individuals with Disabilities Education Act (IDEA), the IFSP documents and guides the early intervention process for young children with disabilities and their families, with the goal of improving the children's physical, cognitive, social, and emotional growth.

    Individuals with Disabilities Education Act of 1990 (IDEA) This legislation amended and updated the Education for All Handicapped Children Act (EHA or EAHCA) and established the legal definition of disability used in special education law.

    Intellectual and Developmental Disabilities (I/DD) Severe, chronic disabilities that can be attributed to mental or physical impairments, are manifested in childhood and continue throughout life, create substantial functional limitations in activities of daily living, and result in a need for individualized services and supports.

    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. The relevant domains within this model are impairment, activity limitation, and participation restriction.

    Katie Beckett Waiver Established as a provision of the Tax Equity and Fiscal Responsibility Act of 1982, this program allows states to provide Medicaid benefits to children with disabilities who would not ordinarily qualify because of parents' income or resources. These waivers offer families the means to provide care for children with medically complex needs at home, as opposed to placing them in institutions.

    Least Restrictive Environment (LRE) A mandate of the Individuals with Disabilities Education Act (IDEA) that requires children with disabilities to receive their education in settings that provide greatest participation in the regular classroom while ensuring maximum educational benefit.

    Life Course Approach A conceptual model that addresses disability issues across generations and through various life stage transitions. It views individuals' life trajectories as the result of a complex interplay between four dynamic factors: historical and geographic location, social ties, human agency, and variations in timing of events and social roles.

    Life Stage Categories Generational stages—including birth, childhood, youth, adulthood, aging, and death/dying—that are shaped by cultural and social influences.

    LRESee Least Restrictive Environment

    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 that resides within the individual and can be cured or ameliorated, or its progression stopped, through a particular treatment or intervention.

    Medicalization of Disability A perspective that views physical and cognitive diversity as pathology, or medical issues that require study, measurement, treatment, and cures.

    NCLBSee No Child Left Behind Act of 2001

    No Child Left Behind Act of 2001 (NCLB) Sweeping education legislation that established accountability measures, academic standards, and high-stakes testing designed to ensure that all students gain the skills needed to succeed in college and the workforce. Under NCLB schools are required to report to the state educational authority (SEA) and demonstrate adequate yearly progress (AYP) toward a goal of 100% proficiency of all tested students by 2014.

    Normative Approach A theory of human development that compares individuals and groups along commonly defined psychological constructs, or norms.

    Patient Protection and Affordable Care Act of 2010 (PPACA) Sweeping health care reform legislation that 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.

    Personal Care Program A consumer-directed Medicaid program that offers people with disabilities such services as home health care and assistance with personal care, activities of daily living, and housekeeping chores.

    Persons With Disabilities Individuals who have long-term physical, mental, intellectual, or sensory impairments that, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.

    PPACASee Patient Protection and Affordable Care Act

    Psychosexual Stages A concept originated by Sigmund Freud that views human development in a series of four psychosexual stages, each of which presents a conflict in a child's life. Freud contended that when the conflict is resolved, the child moves on to the next stage; but if the conflict remains unresolved, the individual remains “fixated” at that stage, which dominates his or her adult personality.

    Psychosocial Stages Developed by Erik Erikson as an alternative to Freud's psychosexual stages, this concept views human development in a series of eight psychosocial stages that extend from infancy through adulthood, each of which involves a basic conflict that either positively or negatively influences an individual's personality development.

    Section 504 A provision of the Rehabilitation Act of 1973 that states that no qualified individuals with disabilities can be excluded from, denied the benefits of, or subjected to discrimination under any programs receiving federal financial assistance. Section 504 requires that school districts provide a free and appropriate public education to qualified students in their jurisdictions who have a physical or mental impairment that substantially limits one or more major life activities.

    Self-Determination Actions that enable a person to serve as the primary causal agent in maintaining or improving his or her own quality of life. Self-determination is a central construct in the independent living and consumer movements across disabilities, in which advocates strive for greater autonomy, choice, and personal control of their lives.

    Sick Role A prominent sociological approach to disability that relieves unhealthy individuals from complying with social behavioral norms, but also obligates them to be both compliant to and appreciative of medical intervention.

    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 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

    SSISee Supplemental Security Income

    Successful Aging A predominant paradigm within gerontology that contends that aging well is marked by high cognitive and physical functioning, low incidence of disease and disability, and active engagement with life.

    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.

    Supports Outcome Model of Aging Well A modification of the concept of aging well that is specifically geared to persons with disabilities by emphasizing the primacy of the environment and individualized supports in influencing outcomes for individuals across the life course.

    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; it also allows people with disabilities to maintain Medicare eligibility for four additional years.

    Title V A provision of the Social Security Act of 1934 that gives federal grants to individual states to support maternal and child health services; many Title V programs are vitally important to children with disabilities and their families, including programs providing rehabilitative services, case management, care coordination, and other critical services for children with special health care needs.

    Transition A disruption in an individual's day-to-day life, including both proximal (daily hassles and stressors) and distal (major events) changes, that results in progression to a new life stage (e.g., from school to work, from single to married, from living with parents, to living alone).

    TWWIIASee Ticket to Work and Work Incentives Improvement Act of 1999


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