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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 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 spinalcord injured individual might experience depression, and a person with multiple sclerosis may simultaneously deal with physical and sensory disabilities. It is also important to note that disabilities are dynamic. People do experience different rates of onset, progression, remission, and even transition from being disabled at one point in time, to not being disabled at another, to being disabled again. Examples of this change in disability status include disability due to bouts of arthritis, Guillain-Barré Syndrome, and postpartum depression.

    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 Long-more, 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.Albrecht University of Illinois at Chicago University of Leuven Belgian Academy of Science and Arts
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    Preface

    Education for children and adults with disabilities in the United States is rooted in a 200-year history, with a clear marker being the establishment in 1817 of the first school for persons with disabilities. In the decades since, societal attitudes about people with disabilities have been reflected in the availability and types of care and services offered to them, often varying dramatically with the type of disability and the prevailing religious, cultural, and political beliefs of the times. Today, widely available educational opportunities mask the historical struggles that children and adults with disabilities experienced in gaining access to educational systems. For more than 150 years, American public schools maintained a legal right to segregate and/or exclude some children with disabilities. Children with disabilities did not gain the legally mandated right to a free and appropriate education in the United States until 1976.

    Historic and current factors that justify inclusion, exclusion, or segregation generally focus on two issues: (1) the purpose of education in the United States; and (2) perceptions of whether or not students with disabilities can benefit from the educational opportunities provided in public schools and institutions of higher education. These issues of purpose and benefit become especially salient when educational resources are scarce, and they are firmly grounded in the perceptions of power brokers, educators, and the general public about the nature of disability and the associated value of the person with disabilities. In this book, we have attempted to convey how responses to these issues over time have affected access to education, as well as the type and quality of educational services provided.

    Chapters 1 and 2 lay the foundations and give depth of information that other chapters in the book add to or build on. These chapters provide a detailed history of education for children and adults with disabilities and explore themes and controversies that have defined the educational structures and opportunities from their earliest incarnations.

    In Chapter 1, Lana Collet-Klingenberg and Cheryl Hanley-Maxwell discuss the details of the most salient events in the history of the field. They also provide an overview of the impact of key people and groups, federal legislation, social movements, and litigation on today's educational opportunities for individuals with disabilities. The emphasis in this chapter is on social and moral movements intended to address the educational needs of Americans in general, including those with disabilities, delinquent adolescents, and immigrants. Historically, much of this education for children and youth with disabilities took place in segregated settings, initially in institutions and later in segregated schools and classrooms. This situation began to change in the early years of the 20th century, when the ongoing growth of the social welfare movement and the workforce pressures of the newly industrializing nation encouraged state and federal governments to mandate and expand educational opportunities for marginalized children and adults, including those with disabilities (as well as veterans from the World Wars who returned from service with disabilities). These periods of progress were often interspersed with major setbacks, as evidenced by events such as the rise of the eugenics movement, which vilified the poor, immigrants, African Americans, and people with disabilities and contributed to a shift in emphasis toward protecting society from these people and justifying segregation and institutionalization. The outcomes of these competing pressures led to conditions and events that unfolded during the 1950s and beyond. As revealed in Chapter 1, the initial civil rights litigation, the social movements that followed that litigation, world events, and political upheaval led to a rapid unfolding of legislation and litigation that culminated in legally mandated access to educational opportunities for children and youth with disabilities in the mid-1970s.

    In Chapter 2, Hanley-Maxwell and Collet-Klingenberg build on the foundation established in Chapter 1 by revealing the issues and controversies that lie beneath many of the events described in that chapter. Chapter 2 highlights a few of the most controversial issues in education today and demonstrates how those issues reflect enduring historical disagreements and cycles of change. Most of the controversies focus on the education rights of children and youth, rather than adults. It should be noted, though, that these cycles of change have also brought about increasing educational opportunities for adults with disabilities. Chapter 2 begins with a broad overview of issues and then tackles specific controversies. The chapter is structured to provide a look at the educational issues from early childhood through adulthood. It describes how the meaning of disability affects educational access, placement, and services, as well as the disproportional representation of students from historically underserved groups (e.g., Native Americans, African Americans, children who live in poverty, and children who are English language learners) in special education. It also addresses controversies related to instruction and interventions, including the use of applied behavior analysis (ABA) for children with Autism Spectrum Disorders, inclusive education, eligibility determination (especially using Response to Intervention as a way to determine if a child has specific learning disabilities), participation in high-stakes assessments, and inequitable education and post-secondary outcomes. Chapter 2 concludes with a discussion of issues related to secondary special education, post-school outcomes, and post-secondary education.

    Chapters 3, 4, and 5 support and enhance the depth of the discussions in the first two chapters by providing additional detail regarding the time line of historical events (Chapter 3), biographies of some of the field's most influential people (Chapter 4), and statistics and data that reflect the constitution of the field today (Chapter 5). Specifically, in Chapter 3, Mary-Elizabeth Glass, Chen-chen Cheng, Hanley-Maxwell, and Collet-Klingenberg provide a broad historical overview with a timeline of critical events, starting with the 1817 opening of the Connecticut/American Asylum for the Education and Instruction of Deaf and Dumb Persons and ending with the 2010 passage of the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) by the U.S. House of Representatives. Key contributors identified in earlier chapters, along with other important persons related to education and disability, are described in the biographies presented in Chapter 4. These 41 individuals have created and/or substantially shaped the face of special education and post-secondary opportunities for youth and adults with disabilities.

    In Chapter 5, Amy C. Stevens Griffith and Hanley-Maxwell provide the data that reflect historical trends and changes, demonstrating how the patterns and controversies identified in Chapters 1 and 2 have played out in the lives of children and adults. This chapter depicts changes in eligibility for special education, service delivery patterns, and school and post-secondary outcomes for students who are provided with special education services. It also provides the data that illustrate the concept of overrepresentation introduced in Chapter 2, including differences in disciplinary actions based on race/ethnicity and disability category. Chapter 5 concludes with data that provide insight into student perceptions about school, their personal connections, and post-secondary aspirations, as well as the actual post-secondary outcomes.

    The last two chapters of the book provide additional information and resources related to education for persons with disabilities. In Chapter 6, Michelle Raasch, Minyoung Kim, Collet-Klingenberg, and Hanley-Maxwell provide current information about grassroots groups and governmental agencies (some of which were introduced in Chapter 1 or highlighted in Chapter 3). Additionally, they introduce other groups, organizations, and governmental entities that continue to affect educational opportunities for children, youth, and adults with disabilities. Contact information is provided for each of the entries to enable further exploration of specific topics or areas of interest. Finally, in Chapter 7, Sharon M. Kolb and Collet-Klingenberg provide resources to assist in future research and exploration. These resources augment those identified in the reference lists in the preceding chapters. This final chapter is composed of annotated listings of selected print and electronic resources that have been included based on their relevance to educational issues discussed throughout the book.

    In writing this book, we have tried to help you, the reader, understand the complexities of the meaning of disability as it relates to identifying students with educational disabilities in schools, as well as its impact on access to educational opportunities. Inevitably, this discussion returns to societal perceptions of the value of persons with disabilities within American life, as well as to the purpose of schooling in America today and in the past. Even as we write this preface, world events and economic pressures continue to push public schools to improve the outcomes for all students, including those with disabilities. The desired outcomes are that all people receive the education they need to obtain meaningful and economically viable employment, participate in our democracy, and become valued members of our communities. In the end, the fight for equitable and effective educational opportunities for persons with disabilities is a fight for social justice. We feel fortunate to have been part of that effort and hope that this book provides you with the insight and impetus needed to participate in that fight.

    CherylHanley-MaxwellLanaCollet-Klingenberg

    About the Authors

    Cheryl Hanley-Maxwell, Ph.D., is a Professor in Rehabilitation Psychology and Special Education and an Associate Dean in the School of Education at the University of Wisconsin–Madison. As Associate Dean, she is primarily responsible for teacher education and related initiatives. In her faculty position, she teaches courses in special education. Her research and scholarly interests include secondary special education, reform and inclusion in secondary education, transition from school to adult roles for all individuals with disabilities, and community employment for people with severe disabilities. Dr. Hanley-Maxwell has authored more than 80 publications, including 60 journal articles and book chapters. Her work has appeared in the top journals in her areas of interest, including Exceptional Children, Rehabilitation Counseling Bulletin, Review of Educational Research, and the Journal for the Association of Persons with Severe Handicaps. In addition to her written work, she has provided more than 80 presentations and workshops, including invited peer-reviewed presentations and keynotes. She has directed or co-directed more than $5.5 million in grants focusing on research and personnel preparation. She has also served on the editorial boards for the Journal of Vocational Rehabilitation, Rehabilitation Counseling Bulletin, Journal of Disability Policy Studies, and Review of Educational Research and provided guest reviews for many other special education and rehabilitation-related journals. In addition to her scholarship, Dr. Hanley-Maxwell has provided public service to school districts, families of children with disabilities, and community organizations. She has also provided consultative services at the local, regional, state, and national levels, working with public school systems, state-level task forces and committees, advocacy groups, and professional organizations throughout the country. She earned her bachelor's, master's, and doctoral degrees in Special Education from the University of Illinois–Urbana/Champaign.

    Lana Collet-Klingenberg, Ph.D., is an Assistant Professor in Special Education at the University of Wisconsin–Whitewater. In this role she teaches many courses in the undergraduate teacher-preparation curriculum. She also coordinates the graduate Transition Certificate program and a freshman learning community for future educators. Research and scholarly interests include teacher education and professional development, secondary special education, school reform, transition from school to adult life, evidence-based practice and autism spectrum disorders, and service learning. Dr. Collet-Klingenberg has authored or coauthored more than 20 publications, including journal articles, book chapters, and online modules. This work has appeared in journals such as Exceptional Children and Preventing School Failure. Her most recent work with the National Professional Development Center on Autism Spectrum Disorders appears on the Ohio Center for Autism and Low Incidence (OCALI), Autism Internet Modules Web site (http://www.autisminternetmodules.org). Dr. Collet-Klingenberg has worked on a variety of federally funded grants in the areas of personnel preparation, professional development, and research, and has successfully written grants with awards totaling over $50,000. She has also served on the editorial board for Career Development for Exceptional Individuals and acted as a guest reviewer for Review of Educational Research and the American Journal on Intellectual and Developmental Disabilities. She is also a reviewer for the National Council for Accreditation of Teacher Education (NCATE). In addition to this scholarship and service, she has also presented at a variety of local, state, and national conferences in peer-reviewed forums as well as invited addresses and keynotes. She has also worked as an advocate for families in local school districts and as an education consultant at the local and state levels. She earned her bachelor's and master's degrees in Special Education from the University of Illinois-Urbana/Champaign, and her doctoral degree in Special Education from the University of Wisconsin–Madison.

    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, to be 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

    ABASee Applied Behavior Analysis

    ADASee Americans with Disabilities Act of 1990

    Adequate Yearly Progress (AYP) An accountability measure in the 2001 No Child Left Behind (NCLB) legislation that requires public schools to demonstrate annual gains in reducing performance gaps and meeting specific standards/goals articulated at the federal, state, and local levels.

    ADHDSee Attention Deficit Hyperactivity Disorder

    Agostini v. Felton This 1997 U.S. Supreme Court case reversed a previous ruling that banned the use of public funds to provide special education services for students with disabilities in parochial and other private schools.

    Americans with Disabilities Act of 1990 (ADA) Also known as P.L. 101–336, this landmark civil rights legislation provides protection against discrimination on the basis of disability in both the public and private sectors in the areas of employment, transportation, public accommodations, and telecommunications.

    Applied Behavior Analysis (ABA) An approach, a theory, and a group of interventions that attempt to modify behavior and teach skills by examining the events or circumstances that precede behavior (antecedents), and the events or circumstances that follow behavior (consequences).

    Armstrong v. Kline This 1979 ruling by the U.S. District Court for Eastern Pennsylvania determined that public schools may be required to provide extended school year services to meet the unique needs of children with disabilities as part of a free and appropriate public education.

    ASDSee Autism Spectrum Disorders

    Attention Deficit Hyperactivity Disorder (ADHD) A developmental disorder characterized by chronic and impairing behavior patterns that involve diminished attention, impulsivity, hyperactivity, or their combination.

    Autism Spectrum Disorders (ASD) A set of five pervasive developmental disorders that appear in early childhood and are characterized by varying degrees of impairment in communication skills and social interactions, as well as by patterns of restricted, repetitive, and stereotyped behavior.

    AYPSee Adequate Yearly Progress

    Beattie v. Board of Education In this 1919 case, the Wisconsin Supreme Court supported a school district's decision to deny an education to a student of average intelligence with physical disabilities because he had a depressing and nauseating effect on his teachers and fellow students.

    Behavioral Intervention Plan (BIP) A plan for the implementation of interventions designed to address the needs of students whose behavior impedes their learning, or who have been referred to alternative placement, suspended for more than 10 days, or placed in alternative settings for weapon or drug offenses.

    BIPSee Behavioral Intervention Plan

    Board of Education v. Rowley In this 1982 case, the U.S. Supreme Court decided that an “appropriate” education is determined by whether or not the student benefits from the education, thus limiting the extent of the services that school districts are obligated to provide to students with disabilities.

    Brown v. Board of Education This landmark 1954 U.S. Supreme Court decision outlawed racial segregation in the nation's public schools and declared that all children had a right to an equal education.

    Buck v. Bell In this controversial 1927 decision, the U.S. Supreme Court upheld the forced sterilization of people with disabilities.

    Cedar Rapids Community School District v. Garret F. This 1999 U.S. Supreme Court decision affirmed that intensive, ongoing health care services qualified as a related service in an individualized education program, as long as those medical services could be provided by trained school staff.

    Child Find A mandate of the Education for All Handicapped Children Act (EHA) and Individuals with Disabilities Education Act (IDEA) that requires educational authorities to seek out children in need of a special education.

    Daniel R.R. v. State Board of Education This 1989 ruling by the U.S. Fifth Circuit Court of Appeals established a two-part rule for determining compliance with the Least Restrictive Environment mandate of the Education for All Handicapped Children Act (EHA): (1) whether the student is making satisfactory progress in the general education classroom; and (2) whether the student has been included with typical peers to the maximum extent possible.

    Diana v. California The consent agreement in this 1970 case said that children must be tested (or retested) in their primary language in order to avoid inappropriate educational placements.

    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.

    Discrete Trial Training (DTT) An instructional method in which tasks and skills are broken into their component parts and taught using an errorless learning approach involving systematic, repeated trials of instruction. Sometimes referred to as Applied Behavior Analysis (ABA).

    Disproportional Representation A problem with the distribution of students in special education, or in certain disability categories, in which students from some demographic groups are represented in greater percentages than they are in the total school population.

    DTTSee Discrete Trial Training

    EAHCASee Education of All Handicapped Children Act of 1975

    Early Childhood (EC) Educational programs for eligible children between the ages of 3 and 5 that 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.

    Early Intervention (EI) Educational programs that target children from birth to 3 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.

    EBDSee Emotional Behavioral Disabilities

    ECSee Early Childhood

    Economic Opportunity Act of 1964 Also known as P.L. 88–452, this legislation launched Head Start, a preschool development program for low-income children as well as children at risk for school failure due to a disability or having a parent with a disability.

    Education for All Handicapped Children Act of 1975 (EHA or EAHCA) Also known as P.L. 94–142, this was the first federal law ensuring educational opportunity for children with special needs. EHA contained six mandated rights for qualifying students with disabilities: (a) zero reject and child find, (b) nondiscriminatory or unbiased evaluation, (c) individualized and appropriate education, (d) least restrictive environment, (e) procedural due process, and (f) participatory democracy for educational decision making.

    Education of Mentally Retarded Children Act of 1958 Also known as P.L. 85–926, this act provided federal funding to prepare teachers and researchers to improve the education of children with intellectual disabilities.

    Education of the Handicapped Act of 1970 Also known as P.L. 91–230, this legislation created the federal definition of learning disabilities and consolidated all other legislation related to children with disabilities.

    EHASee Education for All Handicapped Children Act of 1975

    EISee Early Intervention

    Elementary and Secondary Education Act of 1965 (ESEA) Also known as P.L. 89–10, 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).

    Emotional Behavioral Disability (EBD) Emotional, behavioral, or social functioning that is so different from generally accepted, age-appropriate norms that it adversely affects a child's educational performance, social relationships, classroom adjustment, self-care abilities, or vocational skills.

    ESEASee Elementary and Secondary Education Act of 1965

    Family Educational Rights and Privacy Act (FERPA) A federal law that protects the privacy of students' educational records and gives students and their parents access to records maintained by institutions and educational agencies that receive federal funding.

    FAPESee Free and Appropriate Public Education

    FBASee Functional Behavioral Assessment

    FERPASee Family Educational Rights and Privacy Act

    Florence County School District Four v. Carter This 1993 U.S. Supreme Court decision established a precedent that a school district's failure to comply with IDEA could render it financially responsible if a student was then enrolled in a private school.

    Forest Grove School District v. T.A. This 2009 U.S. Supreme Court ruling found legal grounds in IDEA to allow financial reimbursement for private education of a child with a disability, even when the student had not been served previously in special education in a public setting.

    Free and Appropriate Public Education (FAPE) A right established under Section 504 of the Rehabilitation Act of 1973 for the education of children with disabilities in U.S. public schools; the law defines FAPE as an educational program that is individualized to meet a child's unique needs, provides access to the general curriculum, meets grade-level standards, and confers educational benefit.

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

    Functional Behavior Assessment (FBA) Under the Individuals with Disabilities Education Act (IDEA), this assessment must precede behavior-based decisions related to a change of placement for students in special education; the results determine whether dangerous behavior exhibited by the learner with a disability is related to his or her disability.

    Garland v. Wilks In this 1987 case, the U.S. District Court for the Northern District of Texas ruled that when a student does not benefit from the public school program but does benefit from a private extended-day program, the school district must pay for the extended-day programming.

    Goals 2000: Educate America Act of 1994 Also known as P.L. 103–227, this legislation sought to establish structures and standards/goals that would improve students' post-school outcomes through the development of skills necessary for employment.

    Handicapped Children's Early Education Assistance Act of 1968 Also known as P.L. 90–538, this legislation led to the establishment of early childhood and preschool special education programs for children with disabilities.

    Handicapped Children's Protection Act of 1986 Also known as P.L. 99–372, this legislation provided for the payment of attorney fees and court costs to parents who won lawsuits while exercising their due process rights under the Education for All Handicapped Children Act (EHA).

    Hobson v. Hansen This 1969 District Court ruling said that it was unconstitutional to use test scores—and specifically IQ tests—to group students into levels or tracks of education, because such practices discriminated on the basis of race and socioeconomic status.

    Honig v. Doe In this 1988 decision, the U.S. Supreme Court ruled that the suspension of a student with disabilities for more than 10 consecutive days amounted to a change in placement under EHA and, therefore, was prohibited until the review procedures associated with due process had been completed.

    IDEASee Individuals with Disabilities Education Act of 1990

    IDEIASee Individuals with Disabilities Education Improvement Act of 2004

    IEPSee Individualized Education Program

    IFSPSee Individualized Family Service Plan

    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.

    Inclusive Education A system that provides instruction and services for students with disabilities in general education settings rather than in separate classrooms to ensure that these students have access to the same educational opportunities as their nondisabled peers.

    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 (EI) 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) Also known as P.L. 101–476, 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. Major changes in IDEA included the use of person-first language, the introduction of transition planning for students aged 16 years and older, the creation of two new categories of disability (autism and traumatic brain injury), and the addition of new related services.

    Individuals with Disabilities Education Improvement Act of 2004 (IDEIA) Also known as P.L. 108–446, this legislation amended IDEA and aligned it with the accountability measures introduced in No Child Left Behind (NCLB); major changes included adding attention deficit hyperactivity disorder (ADHD) to the disability category of Other Health Impairments, creating new disciplinary requirements for special education students, and revising how individualized education programs (IEPs) were developed and monitored.

    Job Training Partnership Act of 1982 (JTPA) Also known as P.L. 97–300, this act funded programs that provided job training to individuals who were economically disadvantaged and faced barriers to employment; special education and vocational education teachers used JTPA funds to find and support work experiences for students with disabilities.

    JPTASee Job Training Partnership Act of 1982

    Larry P. v. Riles This 1972 decision by the U.S. District Court for the Northern District of California required schools to use unbiased assessments that did not discriminate on the basis of race in determining whether to place students in special education.

    Learning Disability A general term that applies to various disorders that are intrinsic to the individual, adversely affect the individual's educational performance, and are characterized by significant difficulties in the acquisition and use of speaking, listening, reading, writing, mathematical, or reasoning abilities, despite average to above average IQ.

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

    LRESee Least Restrictive Environment

    Mills v. District of Columbia Board of Education This 1972 U.S. District Court ruling said that the needs of the individual student with disabilities, rather than the cost, should determine the educational services provided by the public school.

    National Defense Education Act of 1958 (NDEA) Also known as P.L. 85–864, this act promoted the security of the United States by increasing the educational opportunities and developing the technical skills of American youth; it also established a precedent for federal involvement in education that eventually led to federal intervention in special education.

    National Longitudinal Transition Study (NLTS I and II) A long-term research project, funded by the U.S. Department of Education, that gathers data on students with disabilities related to their school experiences, academic performance, post-secondary education and training, and transition into employment and adult roles.

    National Vocational Education Act of 1917 Also known as the Smith-Hughes Act (P.L. 64–347), this measure enables states to receive matching federal money for vocational education programs and provides the foundation for later employment training programs for youth with disabilities.

    NCLBSee No Child Left Behind Act of 2001

    NDEASee National Defense Education Act of 1958

    NLTSSee National Longitudinal Transition Study

    No Child Left Behind Act of 2001 (NCLB) Also known as P.L. 107–110, this sweeping education legislation established accountability measures, academic standards, and high-stakes testing designed to ensure that all students gained the skills needed to succeed in college and the workforce; 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.

    Normalization The concept that people with disabilities should have as much access as possible to mainstream society and culture; the fields of special education and disability rights have used this concept to create curricular content, provide the rationale for educating students with disabilities in general education settings, and promote self-advocacy and self-determination.

    Oberti v. Board of Education of the Borough of Clementon School District This 1993 decision by the U.S. Third Circuit Court of Appeals reaffirmed the judicial preference for providing instruction to students with disabilities in general education classrooms over separate special education classrooms.

    PARC (Pennsylvania Association for Retarded Children) v. Commonwealth of Pennsylvania The consent decree in this 1972 case affirmed that all children with intellectual disabilities are entitled to a free and appropriate public education, and that educating students with disabilities in a general education classroom is preferable to doing so in a segregated setting.

    Perkins Act (Carl D. Perkins Vocational Education Act) of 1984 Also known as P.L. 98–524, this legislation established economic and social goals related to improving labor force skills and equalizing opportunities for at-risk populations, which included students with disabilities.

    Rehabilitation Act of 1973 This landmark civil rights legislation, also known as P.L. 93–112, prohibits discrimination on the basis of disability in programs conducted by the federal government or receiving federal funding, as well as in their employment practices.

    Response to Intervention (RTI) Recognized as an alternative method of identifying students with learning disabilities under the 2004 amendments to IDEA, RTI employs a three-tiered approach which measures children's responses to increasingly intensive levels of intervention.

    RTISee Response to Intervention

    Sacramento City School District v. Rachel H. This groundbreaking 1994 ruling by the U.S. District Court for eastern California identified four factors for schools to consider in determining whether to educate a child with disabilities in a general education setting: the educational benefits to the child, the non-academic benefits to the child, the effects of the child's presence on the teacher and fellow students, and the costs associated with the child's presence.

    Schaffer v. Weast In this 2005 case, the U.S. Supreme Court ruled that in a due process hearing to decide whether or not an IEP is appropriate, the burden of proof rests with the party seeking to change the plan.

    School to Work Opportunities Act of 1994 Also known as P.L. 103–239, this legislation sought to establish structures and standards/goals that would improve students' post-school outcomes through the development of skills necessary for employment.

    Section 504 This section of the Rehabilitation Act of 1973 required programs, services, and entities that receive federal funding to make reasonable accommodations and promote accessibility for people with disabilities.

    SLDSee Specific Learning Disabilities

    Smith-Hughes ActSee National Vocational Education Act of 1917

    Smith-Sears Veterans Vocational Rehabilitation Act of 1918 Also known as the Soldier's Rehabilitation Act (P.L. 65–178), this measure created a vocational rehabilitation program for disabled World War I veterans; as amended in 1920, the act includes American citizens with disabilities and provides the groundwork for later programs designed to prepare youth with disabilities to transition from school to employment.

    Special Education A field and discipline devoted to the education of children with disabilities, as well as the system for delivering such education services in public schools.

    Specific Learning Disabilities (SLD) A disability category under IDEA that applies to children with normal intelligence who exhibit patterns of severe learning problems over time, including severe difficulties in acquisition, storage, organization, retrieval, manipulation, and expression of information.

    Stay-Put Provision A requirement incorporated in EHA that prohibits schools from changing the educational placement of children with disabilities until the review procedures associated with due process have been completed.

    Stuart v. Nappi This 1978 decision by the U.S. District Court for Connecticut said that schools may suspend students with disabilities for disruptive behavior, but that such disciplinary measures must follow due process procedures because they effectively represent a change of placement under EHA.

    Tatro v. State of Texas This 1984 U.S. Supreme Court ruling required schools to provide medical and health services necessary to allow students with disabilities to access and/or benefit from education, as long as those services could be provided by trained school personnel rather than a physician.

    Teachers of the Deaf Act of 1961 This legislation, also known as P.L. 87–276, authorized training for teachers of students who were classified as hard of hearing or deaf; it also lays the groundwork for future legislation to support students with disabilities in school.

    Technology-Related Assistance for Individuals with Disabilities Act of 1988 Also known as P.L. 100–407, this measure supported the development of assistive technology (AT) for children and adults with disabilities to create greater access to and involvement in their communities.

    Timothy W. v. Rochester School District This 1989 decision by the U.S. First Circuit Court of Appeals affirmed that all children—even those with severe disabilities—are entitled to a free and appropriate education, regardless of whether or not the parents can prove the child is benefiting from the education.

    Vocational Education Act of 1963 This law (P.L. 88–210) and its 1968 amendments (P.L. 90–576) appropriated millions of dollars to vocational education and specified that the funds could be used for persons with mental retardation, hearing impairments, or other disabilities.

    Vocational Rehabilitation Act Amendments of 1954 Also known as P.L. 83–565, this act significantly increased funding for vocational rehabilitation services, made programs available to individuals with intellectual disabilities and mental health needs, and ultimately resulted in the creation of more than 100 university-based disabled student services programs.

    WIASee Workforce Investment Act of 1998

    Winkelman v. Parma City School District This 2007 U.S. Supreme Court ruling said that parents of children with disabilities have the right to represent the interests of their children in court and are not required to have legal representation.

    Workforce Investment Act of 1998 (WIA) Also known as P.L. 105–220, this legislation targeted the creation of accessible job services and employment training for adults and youth by providing a variety of services, including assessment, academic skill instruction and support, occupational training, and work experiences.

    Wyatt v. Stickney This 1972 federal court ruling established minimum standards for appropriate treatment of persons with disabilities in an institutional setting, which included access to education.

    Zero Reject A mandate of EHA and IDEA that says no child may be denied an education, regardless of the type or severity of his or her disability.


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