Health and Medicine
Publication Year: 2011
This volume in The SAGE Reference Series on Disability explores health and medical issues for people with disabilities. It is one of eight volumes in the cross-disciplinary and issues-based series, which incorporates links from varied fields making up disability studies as volumes examine topics central to the lives of individuals with disabilities and their families. With a balance of history, theory, research, and application, specialists set out the findings and implications of research and practice for others whose current or future work involves the care or study of those with disabilities, as well as for the disabled themselves. The concise, engaging presentational style emphasizes accessibility. Taken individually, each volume sets out the fundamentals of the topic it addresses, accompanied by compiled data and statistics, recommended ...
- Front Matter
- Subject Index
- Chapter 1: Introduction, Background, and History
- Chapter 2: Current Issues, Controversies, and Solutions
- Chapter 3: Chronology of Critical Events
- Chapter 4: Biographies of Key Contributors in the Field
- Chapter 5: Annotated Data, Statistics, Tables, and Graphs
- Chapter 6: Annotated List of Organizations and Associations
- Chapter 7: Selected Print and Electronic Resources
The SAGE Reference Series on Disability: Key Issues and Future Directions[Page ii]
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[Page iii]
Copyright © 2011 by SAGE Publications, Inc.
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
Printed in the United States of America
Library of Congress Cataloging-in-Publication Data
Mullner, Ross M.
Health and medicine / Ross M. Mullner.
p. cm.—(The Sage reference series on disability: key issues and future directions; 1)
Includes bibliographical references and index.
ISBN 978-1-4129-8110-1 (cloth)
1. People with disabilities—Health and hygiene. I. Title.
11 12 13 14 15 10 9 8 7 6 5 4 3 2 1
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Series Introduction[Page vi]
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 [Page vii]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 [Page viii]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, [Page ix]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 [Page x]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 [Page xi]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
- 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
- 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
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.
[Page xii]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 [Page xiii]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.[Page xiv]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 [Page xv]time and environments to conceive of and develop the project. While none of these people or institutions is responsible for any deficiencies in the work, they all helped enormously in making it better.University of Illinois at Chicago, University of Leuven, Belgian Academy of Science and Arts,ReferencesAlbrecht, G. L. (ed.). (2006). Encyclopedia of disability (5 vols.). Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/97814129505102010). The sociology of disability: Historical foundations and future directions. In C.Bird, A.Fremont, S.Timmermans, & P.Conrad (eds.), Handbook of medical sociology((6th ed., pp. 192–209). Nashville, TN: Vanderbilt University Press.Albrecht, G. L., Seelman, K. D., & Bury, M. (eds.). (2001). Handbook of disability studies. Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/9781412976251Disability outcomes research: Why this supplement, on this topic, at this time?Archives of Physical Medicine and Rehabilitation81, S1-S4. (2000).Public health services and cost-effectiveness analysis. Annual Review of Public Health29, 383–397. (2008). http://dx.doi.org/10.1146/annurev.publhealth.29.020907.090808Why is the developed world obese?Annual Review of Public Health29, 273–295. (2008). http://dx.doi.org/10.1146/annurev.publhealth.29.020907.090954Evidence-based public health: A fundamental concept for public health practice. Annual Review of Public Health30, 175–201. (2009). http://dx.doi.org/10.1146/annurev.publhealth.031308.100134Why some disabled adults in Medicaid face large out-of-pocket expenses. Health Affairs29, 1517–1522. (2010). http://dx.doi.org/10.1377/hlthaff.2009.0147Using information technology to improve the management of chronic disease. Medical Journal of Australia179, 242–246. (2003).1998). Nothing about us without us: Disability, oppression and empowerment. Berkeley: University of California Press. http://dx.doi.org/10.1525/california/9780520207950.001.0001(2010) Studying disability: Multiple theories and responses. Thousand Oaks, CA: Sage., & (Diabetes, major depression, and functional disability among U.S. adults. Diabetes Care27, 421–428. (2004). http://dx.doi.org/10.2337/diacare.27.2.421Creating a high-performance system for comparative effectiveness research. Health Affairs29, 1761–1767. (2010). http://dx.doi.org/10.1377/hlthaff.2010.0608[Page xvi]European Disability Forum. (2003). Disability and social exclusion in the European Union: Time for change, tools for change. Athens: Greek National Confederation of Disabled People.European Union. (2000). Charter of fundamental rights. 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Measuring disability prevalence (World Bank working paper). Washington, DC: The World Bank.(Key concepts in disability. The Lancet374, 1795–1796. (2009). http://dx.doi.org/10.1016/S0140-6736%2809%2961527-02010, October 28). Dawn of a new day. Ray Ozzie's Blog. Retrieved from http://ozzie.net/docs/dawn-of-a-new-day(Little evidence of correlation between growth in health care spending and reduced mortality. Health Affairs29, 1523–1531. (2010). http://dx.doi.org/10.1377/hlthaff.2009.0287[Page xvii]Social networks and health. Annual Review of Sociology34, 405–429. (2008). http://dx.doi.org/10.1146/annurev.soc.34.040507.134601United Nations. (2008). Convention on the rights of persons with disabilities. New York: United Nations. Retrieved from http://un.org/disabilities/convention2010). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. New York: Crown.(Effect of subclinical status in functional limitation and disability on adverse health outcomes 3 years later. The Journals of Gerontology: Series A62, 101–106. (2007). http://dx.doi.org/10.1093/gerona/62.1.101World Bank Disability and Development Team. (2004). Poverty reduction strategies: Their importance for disability. Washington, DC: World Bank.World Health Organization. (2001). International classification of functioning, disability and health. Geneva: Author.World Health Organization. (2010). Community-based rehabilitation guidelines. Geneva and Washington, DC: Author.World Health Organization, & World Bank. (2011). World report on disability. Geneva: World Health Organization.
People with disabilities are a large and growing sector of the world's population that need medical care, healthcare facilities, and public health services. Disabilities are very broad in scope and include such conditions as birth defects, developmental disabilities, behavior/learning problems, substance abuse, injuries, chronic diseases, and mental disorders. Some individuals are born with disabilities, while others acquire them as they age. Over their life spans, the majority of people will experience disabilities or will have friends and family members who do.
Today about 50 million people in the United States—or one in every five Americans—have a disability. However, because of a lack of standard definitions and survey questions, the true number of people with a disability is unknown.
In the future, it is projected that the number of Americans with disabilities will grow significantly with the aging of the large baby boomer generation, many of whom are already experiencing multiple health problems and chronic diseases. Also, the increasing survival rates of premature infants and the successful treatment of cancer and other childhood illnesses often result in disabilities. Additionally, many children and adolescents will likely develop disabilities in the future because of the rising rates of asthma, obesity, diabetes, and other health conditions they are currently experiencing.
To prevent the occurrence of disabilities, better manage the healthcare of those with disabilities, and rehabilitate people with disabilities in the future, new advances as significant and revolutionary as those of the past will need to be accomplished. In the past century, these advances in medicine, healthcare facilities, and public health have greatly lowered population mortality rates, especially infant death rates, and increased overall life expectancy. For example, in 1900 the average life expectancy at birth for Americans was only 48.2 years, while in 2007 it was 77.9 years—an increase of nearly 30 years.
[Page xix]Past advances such as greater sanitation, the chlorination of drinking water, and the discovery and wide use of antibiotics—including sulfa drugs, penicillin, and streptomycin—have resulted in the control of many formerly deadly infectious diseases. Mass public health immunization programs have resulted in the eradication of the deadly disease smallpox, the elimination of the debilitating disease polio, and the control of such diseases as measles, rubella, tetanus, and diphtheria.
The identification of the underlying risk factors of coronary heart disease and stroke, and their modification (such as blood pressure control), early detection, and better treatment, have resulted in a dramatic decline in deaths from those two diseases. The greater public awareness of the deadly health hazards of tobacco, the labeling of cigarette packages identifying the hazards of smoking, the banning of cigarette advertising on television, and the use of antismoking drugs and patches have resulted in the prevention of millions of tobacco-related deaths from lung cancer, heart disease, and other related diseases.
Better hygiene, the availability of antibiotics, greater access to healthcare, and technologic advances in maternal and neonatal medicine have resulted in healthier mothers and babies—with a 90% decrease in infant mortality and a 99% decrease in maternal mortality since 1900 in the United States. Family planning has provided health benefits such as smaller family size and longer intervals between the births of children, which has lowered infant and maternal mortality.
Safer workplaces have resulted in the decrease of severe injuries and deaths related to mining, manufacturing, construction, and transportation. Motor-vehicle safety, including safer vehicles and highways, along with the increased use of safety belts, child safety seats, motorcycle helmets, and behavioral changes such as decreased drinking and driving, have resulted in lower injury and mortality rates. Safer and healthier foods, with decreases in contamination and increases in nutritional content, have resulted in the elimination of major nutritional deficiency diseases such as rickets, goiter, and pellagra. These advances are some of the crowning achievements of the last century, but they also have resulted in tremendous new challenges. The decline of infectious diseases and the aging of the population have given rise to the new burden of chronic diseases, injuries, and other conditions, many of which often result in the limitation of activities and disabilities.
People are now living longer, but many are also living sicker. Specific examples are dramatic: in 1910, children with Down syndrome in the [Page xx]United States were only expected to survive to age 9. Today, 80% of adults with Down syndrome reach the age of 60, and many live even longer. Prior to World War II, the life expectancy for a person with a spinal cord injury was only a little over one year. Today, many live for decades. In 1973, the average age of survival for a child with cystic fibrosis was 7 years. Today, about one-half of all individuals with the disease are 21 years of age or older. In the 1970s, less than one-third of children with spina bifida reached the age of 20. Today, more than 80% reach adulthood. At the beginning of the HIV/AIDS epidemic in the early 1980s, the disease was a stark death sentence. Today, because of the use of combination antiretroviral drug therapy, a 20-year-old diagnosed with HIV can expect to live 13 years longer than the same person diagnosed with HIV in 1996.
Medicine, healthcare facilities, public health, and indeed all of society must now face a new emerging world. In the near future, for the first time in world history, people age 65 and over will outnumber children under the age 5. Already, the number of people age 85 and over, the oldest-old, are the fastest-growing sector of many national populations. Chronic diseases—such as cardiovascular disease, cancer, dementia and Alzheimer's disease, and diabetes, many of which lead to long-term disabilities—are now the major cause of death among older people in both developed and developing countries.
Realizing that these changes will have an enormous impact on all aspects of society, a number of private organizations and government agencies have called for action. For example, in 1991 the Institute of Medicine (IOM) published the seminal report Disability in America: Toward a National Agenda for Prevention, which proclaimed disability to be the nation's largest public health problem. In 2000, the U.S. Department of Health and Human Services' (DHHS) Healthy People 2010 initiative, which is the federal government's ten-year public health agenda for the nation, included a chapter on the health of people with disability for the first time. In 2005, the U.S. Surgeon General published the Call to Action to Improve the Health and Wellness of Persons With Disability, the first-ever Surgeon General's Call to Action, which identified equipping healthcare providers with the knowledge and tools to screen, diagnose, and treat persons with a disability with dignity among its four goals. In 2007, the National Institute on Aging and the U.S. Department of State published Why Population Aging Matters: A Global Perspective, which identified nine major global aging trends, including the growing burden of chronic diseases. That same year, the Institute of Medicine (IOM) published [Page xxi]The Future of Disability in America, which concluded that American society must do much more to enable people with disabilities to lead full and productive lives. The report also warned that failing to act will lead to individual and societal costs, including avoidable dependency, diminished quality of life, increased stress on individuals and families, and lost productivity. In 2011, the World Health Organization (WHO) and the World Bank published the World Report on Disability, which called attention to the global importance of disability for the economies, health, and well-being of the world's population.
Although people with disabilities are no longer the invisible and silent minority they once were, and many federal, state, and local laws have been passed to protect their civil rights, they still often encounter many barriers in daily life and in healthcare environments. These barriers create significant problems for people with disability in receiving timely, safe, and appropriate high-quality healthcare.
People with disabilities often face inaccessible and inadequate public and private transportation systems that can make healthcare appointments difficult to make and keep. People living in rural areas, which often do not have any public transportation systems, have particular difficulty accessing healthcare facilities. Unfortunately, many hospitals, clinics, and other healthcare facilities do not include transportation as part of the regular services they provide.
The health insurance status of people with disabilities also does not guarantee their ability to access healthcare. Those without health insurance are less likely to have a primary physician, and more likely to have trouble finding a physician who understands their disability, and to postpone or to go without needed healthcare. For those with health insurance, their coverage may only provide very limited preventive care and not provide basic technologies that increase safety and functioning. For example, the nation's Medicare program allows only one preventive medical examination to new beneficiaries during the first year they are in the program. Medicare does not pay for routine dental care, eyeglasses or contact lenses, or hearing examinations and hearing aids.
Despite federal regulations and state and local building codes, hospitals and physicians' offices frequently lack buildings, equipment, and services suitable for people with disabilities. For example, individuals with mobility limitations and other impairments often find that medical examination tables, hospital beds, weight scales, imaging devices, and other common medical products are, to some degree, inaccessible. Additionally, many [Page xxii]healthcare facilities do not have adequately trained staff members and technologies to communicate with people who are hearing impaired or have speech disabilities.
To better serve the needs of people with disabilities, medicine, healthcare facilities, and public health will need to greatly expand their existing programs as well as create many new, innovative programs and services. Medical schools will need to change their already crowded curriculums to better educate students on the healthcare and social needs of those with disabilities. They must also offer more courses in the medical specialty of physical medicine and rehabilitation. Physicians will need to increasingly work in teams to solve complex chronic healthcare problems. They will also need to train their staff and professional personnel to be more aware and sensitive on interacting with people with disabilities, and include those with disabilities in outcome research studies and clinical trials of new drugs and medical devices. Healthcare facilities such as hospitals, clinics, and nursing homes will need to provide a wider array of occupational therapy, physical therapy, and rehabilitation services, as well as provide more social and transportation services. These facilities will also need to incorporate universal design features to ensure the greatest access by the disabled. Public health organizations will need to develop more comprehensive definitions of disability and monitoring systems to track national and local changes in disability rates. They will also have to work to prevent secondary health conditions and promote the overall health of those with disability, and help develop more effective healthcare policies to better serve them.
This volume of the SAGE Reference Series on Disability will address the many important health and medical issues concerning people with disabilities. Specifically, Chapter 1, Introduction, Background, and History, discusses the difficult problem of defining disability, the various widely used models of disability, the diseases, injuries, and conditions that often lead to disability, and the role of medicine, healthcare facilities, and public health in addressing the needs of those with disability. Chapter 2, Current Issues, Controversies, and Solutions, uses a health services research framework to discuss access, cost, quality, and the outcomes of healthcare of those with disabilities. Chapter 3, Chronology of Critical Events, presents a detailed chronology of the major milestones in the histories of medicine, public health, and disability from the earliest recorded times to the present. Chapter 4, Biographies of Key Contributors in the Field, provides the life stories of selected individuals who have made significant discoveries and [Page xxiii]contributions to medicine, public health, and the field of disability. Chapter 5, Annotated Data, Statistics, Tables, and Graphs, presents 14 tables that provide a profile of people with disabilities, healthcare professionals, and facilities. Chapter 6, Annotated List of Organizations and Associations, which is divided into 12 categories, identifies the major academic centers and university programs, government agencies, and national and international organizations and associations involved in the health and medical aspects of disabilities. Lastly, Chapter 7, Selected Print and Electronic Resources, which is divided into nine categories, presents an annotated list of core print and electronic resources for selected topics in health, medicine, and disability.
This book is testament to the efforts of a large number of dedicated and talented people. First, I would like to thank Gary L. Albrecht, the editor of the series, for inviting me to write this volume. Kevin Hillstrom and Laurie Collier Hillstrom of Northern Lights Writers Group provided valuable editorial assistance. I would particularly like to thank Gerard M. Castro, Jessica M. Mazza, Melissa A. Satterlee, and Jacqueline Sieros for writing portions of Chapter 2.
I also appreciate the advice, counsel, and friendship of my colleagues at the University of Illinois at Chicago: Marcia and Gregory Finlayson, Benn Greenspan, Tamar Heller, Kevin Hogan, Anthony LoSasso, Edward Rafalski, Louis Rowitz, and Richard Sewell.
On a personal level, I want to thank my wife, Linda, for her unyielding support, and my two sons, Erik and Jason.
About the Author[Page xxiv]
Ross M. Mullner, Ph.D., M.P.H., is a health services researcher and a public health professional. For over 35 years, Dr. Mullner has worked as an academic, healthcare administrator, and consultant. He is currently an associate professor of health policy and administration at the School of Public Health of the University of Illinois at Chicago. He also holds appointments in the University of Illinois's School of Pharmacy, Department of Pharmacy Administration, and the College of Medicine, Department of Psychiatry. Before joining the faculty of the University of Illinois, he was director of research at the American Hospital Association's Healthcare Research and Educational Trust (HRET) and associate director of the Hospital Data Center.
Dr. Mullner has authored or edited eight books and has written more than 90 articles on various areas of healthcare. His work has appeared in the New England Journal of Medicine, Health Services Research, Medical Care, and Social Science and Medicine. He is the associate editor of the Journal of Medical Systems and has served on the editorial boards of Health Services Research, Inquiry, and Quality Management in Health Care. To keep abreast of the healthcare literature, he has written 45 book reviews for Library Journal, Choice, and Inquiry.
Dr. Mullner has served on a number of national boards and has been a consultant to a number of healthcare and government organizations, including the national Institute of Medicine (IOM), U.S. Government Accountability Office (GAO), Health Resources and Services Administration (HRSA), Joint Commission, and Cancer Treatment Centers of America. Over the years, Dr. Mullner has received a number of honors for his work, including being elected to Who's Who in Medicine and Healthcare, Who's Who in America, and Who's Who in the World. He earned a bachelor's degree from Chicago State University, and two master's degrees and a doctoral degree from the University of Illinois.
About the Series Editor[Page xxv]
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 [Page xxvi]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).