Donald J Lollar. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
Traditional public health approaches to disease prevention and health promotion have failed to take into account the concerns and needs of people with disabilities. As a result, public health messages have often depicted people with disabilities as the negative result of “unhealthy” actions. Acutely aware of this devaluation of their experience, people with disabilities have rejected public health as inimical to their very existence. However, a more positive relationship has begun to evolve over a period of time, but not without continued substantial tension. Developing a positive relationship will continue to require mutual understanding of the different factors that have brought initially disparate movements into contact.
As part of the divergent histories, the concepts and terms, which carry different nuances for public health professionals and persons with disabilities, need to be examined and clarified. For example, terms such as disability and morbidity, constructs such as health and wellness, and factors such as technology and environment have different meanings across communities and among countries (Linden, Me, and Vanek 1996; Madden and Hogan 1997). Forging common ground from substantially different beginnings, in light of medical and technological advances and with a growing disability empowerment movement, is a challenge of great global importance for the future of both communities.
This chapter defines areas where disability and public health can mutually inform one another to respond to the particular needs of people with disabilities. Public health has a long tradition in surveillance and primary prevention activities; both represent strategies that can be translated into methods to better respond to the circumstances of people who experience disabilities. While primary prevention messages are equally valid for people with and without disabilities, public health has an opportunity to focus efforts on preventing the onset of other health conditions (secondary conditions) that may be associated with disability. In addition, traditional public health surveillance activities highlight the magnitude of health problems and are equally applicable to people with disabilities. The major public health need in this area is the development of methods to capture information about disability status as a demographic characteristic of the population, just as gender and age can be captured. Moreover, using a conceptually rigorous framework of disability to describe and measure activity, participation, and environmental factors allows an appreciation of the complexity of an individual’s experience in relationship to society. Understanding the complexity of disability may lead to more appropriate public health interventions and policies that have the capacity to enhance the lives of people with disabilities.
The Public Health Model
The public health movement developed over several hundred years, beginning with efforts to prevent diseases that, unchecked, could affect much of the population. Emphasis, naturally, has been on preventing diseases and conditions that take lives prematurely. In its simplest form, the public health process includes identifying a disease, isolating the mechanism by which the disease is transmitted, and intervening to stop its spread. Initially, public health professionals used whatever interventions were available (e.g., improving sanitation) to halt the transmission of a communicable disease. As science improved, public health used additional new tools, such as antibiotics, for intervention. This approach has been used throughout the world by public health agencies since their inception. To monitor the success of public health interventions, researchers collected mortality data, and surveillance—the procedure for tracking the course of the disease and its impact on human mortality—was used. (The term surveillance itself conjures images of intrusion and elicits feelings of invasion among the general population, including those with disabilities.) An equally important part of the disease prevention process was identification of population subgroups that were more vulnerable to a particular disease. This process of identification, intervention, and follow-up assessment became established as the public health process. Although the process is straightforward, the issues surrounding it are quite complex. In most countries, several agencies have mandates to address various aspects of the process, from conducting cellular research and social marketing surveys to addressing human behavior change. The strength of this scientific process for public good has long been used and accepted.
By the early 1970s, however, conditions other than communicable diseases began to receive considerable attention, and the role of public health changed, expanding to deal with emerging health issues. For example, the ferocity of the HIV epidemic challenged public health to find ways to influence human behavior. Moreover, once public health professionals added new interventions, other conditions and approaches were added. Injuries and chronic diseases, such as diabetes and arthritis, came within the purview of public health surveillance and interventions. In addition, social and behavioral science assumed a greater role in the public health process. As a result, over the past 10 years, numerous structural changes have been made to expand the science and programs to address this broadened public health agenda.
In 1988, the Centers for Disease Control and Prevention’s (CDC’s) National Center for Environmental Health (NCEH) initiated a program for disability prevention in the United States. This initiative was the first of its kind within the U.S. public health structure. Its primary responsibilities were the following:
- To coordinate disability prevention activities,
- To establish surveillance systems for disabilities,
- To identify populations at risk and develop interventions, and
- To provide states with assistance to build their own capacity (Houk and Thacker 1989).
The program initially focused on preventing conditions that contribute to disability, such as traumatic injuries, birth defects, developmental disabilities, or chronic illness. Simultaneously, specific emphasis was given to the specific “causes” of disabling conditions. CDC established two new centers, the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) in 1989 and the National Center for Injury Prevention and Control (NCIPC) in 1991. In addition, the Division of Birth Defects and Developmental Disabilities within the NCEH continued to expand its activities, including work to prevent both fetal alcohol syndrome and autism.
These were important new public health initiatives in several ways. First, they focused attention on non disease causes of death in the population. Second, they required public health to pay attention to outcomes beyond mortality. (In public health, this set of outcomes is referred to as morbidity—the medical outcomes, excluding death.) Morbidity is classified using the International Classification of Diseases (ICD) codes. These changes in public health opened the door for attention to be given to the health of people living with a disability—those who might be viewed in traditional public health terms as failures of the primary prevention model. Third, the initiatives pointed to the need for clearer concepts, constructs, terminology, and data to apply the public health model to people with disabilities. In fact, although morbidity has often been confused with disability (Chamie 1995), morbidity is but one factor that contributes to the disabling process, while environmental factors also contribute substantially to disability.
As primary prevention activities for conditions leading to disability increased, relatively little attention was paid to the health of people with disabilities. The attention that was given usually addressed the relative lack of information about the impact of disability on the quality of life or on a few secondary medical complications that affect independence (Houk 1991). In fact, public health professionals generally lacked an understanding of the factors affecting the lives of people with disabilities. It was natural, then, to spend ever more energy on the time-honored model of primary prevention—identifying the disease (in this case, disability), addressing the mechanisms for its cause (birth defect, developmental disability, injury, chronic illness), and intervening to reduce or prevent the primary condition from occurring. Modifying the model to address secondary problems of people already experiencing disability was difficult, to say the least. Changes included seeing disability not as a negative outcome such as illness and injury but rather as a health state experienced by the person and influenced by the environment, as well as accepting the premise that people with disabilities can be healthy.
People with disabilities have pressed for involvement in any areas affecting their lives. “Nothing about us without us,” the disability community mantra, is now in the public domain. “Disability prevention” is viewed by many in the disability community as an attempt at least to devalue if not eliminate the lives of people with disabilities, and primary prevention activities are perceived as the implementation of this concept. The public health community, on the other hand, has tended to see disability as a purely medical issue. Contributing to the tension has been public health’s failure to frame comments, survey questions, or presentations with sensitivity to the concerns of people with disabilities who increasingly identify themselves as a minority group. Although conceptually it may be possible to move seamlessly from the primary prevention of conditions creating disabilities to promoting the health and well-being of people with disabilities, practically, this shift has not occurred. Over time, it may be possible to integrate the best of public health science and practice into the advocacy and networks of people with disabilities to create a powerful force for improving the health of this segment of the public. Until that time, data, interventions, and programs may continue to seem somewhat artificial. Public health programs that view people with disabilities as a population to whom their primary prevention messages should be directed are the most helpful way to begin the integration. For example, programs should provide information to people with mobility limitations about preventing falls or provide cancer screens for people using catheters or bowel stimulation programs.
Major Works: Data
Data resulting from this emerging public health perspective have grown in their capacity to track conditions associated with disability. Four principal associations have been made with disability in the primary prevention public health model, regardless of the country where people with disabilities reside (Australian Institute of Health and Welfare 1997; Secretary of State for Health 1991). These associations include birth defects, developmental disabilities, injuries, and chronic diseases or conditions. As data are presented, it is important to understand that definitions of disability may differ across various “causes.” For example, a diagnosis of cerebral palsy or spinal cord injury itself often defines a disability. At other times, disability may refer to the activity limitations experienced by a person with a particular diagnosis. Different approaches to data collection produce different statistics, often making comparisons impossible. The reasonable emphasis in primary prevention statistics is to make the connection between certain characteristics and certain outcomes. For example, motor vehicle crashes create the largest percentage of spinal cord injuries. Low birth weight is strongly related to developmental disabilities, such as cerebral palsy, sensory impairments, or mental retardation. It is clear that identifying such relationships is required to provide the basis for interventions if these conditions are to be reduced or prevented. Wearing seat belts and providing adequate prenatal care are examples of primary prevention activities within the public health model. Intervention approaches will be further explored later in this chapter.
Birth Defects Data
Birth defects have been the leading cause of infant mortality in the United States over the past few years (Erickson 1997). Currently, surveillance data are collected in nearly 40 states in the United States, and a National Birth Defects Prevention Network has been developed (Edmonds 1997). The International Clearinghouse for Birth Defects (1991) has chronicled the establishment of birth defects surveillance programs in European countries and the United States as a result of the thalidomide outbreak some 40 years ago. Because there are often no prevention strategies, the natural product of the known strategies focuses on preventing the condition and reducing costs to society. Particular attention has been given to research showing that folic acid use among women in childbearing years could reduce neural tube defects by at least 50 percent (Mulinare and Erickson 1997). Intervention strategies, therefore, emphasize increasing the number of women of childbearing age who have adequate amounts of folic acid in their daily diet. Other conditions are those associated with alcohol use during pregnancy but often not identified until much later (fetal alcohol syndrome [FAS]) or with a chromosomal anomaly (Down syndrome). The prevalence of FAS is estimated to be 1.4 per 1,000 live births, while Down syndrome is estimated at 1 per 1,000 live births. Intervention for FAS can clearly focus on women of childbearing age not drinking if pregnancy is a possibility or not getting pregnant if drinking is not eliminated. There is, as yet, no preventive activity for Down syndrome. Of course, numerous other conditions are monitored in birth defects surveillance systems, but likewise, no prevention strategies have been identified.
Developmental Disabilities Data
Population-based data on developmental disabilities are very difficult to collect. Developmental disabilities is the term used to describe a group of severe chronic conditions that affect basic areas of function during the childhood or adolescent period. The conditions usually include cognitive delay/deficit or sensory or motor impairments. The first population-based study of the prevalence of these conditions in the United States is the Metropolitan Atlanta Developmental Disabilities Study (MADDS). Among 10-year-old children, the multiple-source approach found the prevalence of various conditions per 1,000 children—mental retardation, 10.3; cerebral palsy, 2.0; hearing impairment, 1.0; and visual impairment, 0.6 (Yeargin-Allsop et al. 1992). For this study, most of the data were collected through school system identification. The Research and Training Center on Community Living at the University of Minnesota has analyzed the U.S. National Health Interview Survey, Disability Supplement (NHIS-D). The 1994 to 1995 family household survey produced a prevalence of 1.62 percent of the total population with mental retardation or other developmental disabilities (MR/DD Data Brief 1999). The definition of developmental disabilities explicitly requires substantial limitations in major life activities, such as self-care, receptive and expressive language, learning, mobility, self-direction, ability for independence, and economic self-sufficiency. For purposes of intervention, one study has shown the use of magnesium sulfate associated with decreasing cerebral palsy and mental retardation among very low birth weight infants (Schendel et al. 1996). Murphy et al. (1998) suggest that research addressing the relationship between socioeconomic and other factors for mental retardation, while challenging, is an important area for exploration.
Injuries are also closely associated with disabilities. Given the continuing acknowledgment of the need for primary prevention strategies to reduce mortality and disability associated with injuries, the NCIPC has developed guidelines for collecting information on central nervous system injuries (CDC 1996). This surveillance protocol allows continuity of data collection across states within the United States. Data show that there are 33 million injury-related emergency department visits each year in the United States, the most common causes being motor vehicle crashes, falls, and violence. Twenty-five percent of the injuries treated during emergency department visits are alcohol related. Traumatic brain injuries affect 2 million people, while spinal cord injuries hospitalize 10,000 people each year (CDC 1997b). Rehabilitation services are not available consistently across the country, and many that are geographically accessible are not financially accessible (CDC 1999b). Violence against women has also been a major public health concern. NCIPC estimates that 1.8 million women are assaulted each year.
Prevention activities have emphasized improved trauma care, improved counseling regarding alcohol use, and partnering with the National Institute of Justice to complete a national survey that could estimate partner violence and health outcomes. Results indicate that initiation of a trauma care system can decrease preventable deaths by 50 percent, as demonstrated in Orange County, California. Clinical preventive services focusing on alcohol use counseling can reduce consumption for 20 percent of patients with mild or even moderate drinking patterns (CDC 1999b). The violence survey will identify gaps in information about violence toward women and will provide the basis for a research program to address the problem. Women with disabilities would appear to be a particularly vulnerable group, given the results of research in Texas (Nosek et al. 1997) and Massachusetts (Myers et al. 1997).
Chronic Disease Data
Chronic disease is another major contributor to disability, creating major activity limitations for more than 1 of every 10 people in the United States—approximately 25 million people. Chronic disease also is responsible for 7 of 10 deaths each year. Cardiovascular disease causes about 40 percent (960,000) of all deaths in the United States each year (CDC 1998a). In addition, as the population ages, chronic conditions will increase. The NCCDPHP indicates that 16 percent of the population was older than age 60 in 1998, but by 2020, that percentage will increase to 25.
Preventive measures in the field of chronic diseases focus on four areas: promoting individual healthy behaviors, expanding early detection activities, providing intensive health education in schools and communities, and enhancing healthy communities. These public health activities clearly are relevant to all people, including people with disabilities. The individual behaviors related to extinguishing tobacco use, increasing physical activity, and encouraging good nutrition are extremely relevant for people with disabilities. For example, data from the Behavioral Risk Factor Surveillance System (BRFSS) indicate that people with disabilities are more likely to smoke than are people without disabilities (Wilber et al. 1998). Likewise, early screening for chronic diseases such as cancer, diabetes, and arthritis is crucial for people with disabilities, who may be more vulnerable but often do not receive adequate primary health care. Unfortunately, in many of the population-based surveys, there is no demographic-like variable identifying “people with disabilities” for purposes of comparing rates of cancer, diabetes, and arthritis. Rather, emphasis is on these conditions “creating” disability. Population-based data are not available to make that connection because people with disabilities are not identified, thereby eliminating the opportunity to place this group alongside other subgroups of the population, such as men and women, ethnic or racial groups, socioeconomic status, or education level. Children and adolescents in school may be exempt from physical and health education, and special education classes are often not included in health education curricula. Finally, communities encourage health for the population by establishing health promotion programs or walking trails, but these are not accessible to people with disabilities. The potential for public health primary prevention activities to include people with disabilities is substantial but not currently strong.
All the data sources previously described focus on a particular diagnostic group. The basis for this emphasis is twofold: the medical orientation of public health and the correlative use of the ICD as the basis for data collection and surveillance activities. As a result, public health stresses developing and implementing interventions on the basis of a diagnostic group. The emphasis, then, is on primary prevention, not on the people who already experience the condition. A recurring theme is the lack of public health emphasis on people who fall through the primary prevention net.
Even if public health attempts to address the health of people with disabilities, this approach can only focus on those conditions selected as most prevalent, most severe, or most costly. Although these are worthy criteria, they do not cover all individuals experiencing limitations, thereby excluding from public health interventions many people with disabilities. In view of this gap and in the context of the public health model, an alternative system for identifying people with disabilities is required. A public health framework for disability needs to include a conceptual system that encompasses all limitations, outlines the constructs, and provides a way to classify limitations for the purpose of surveillance.
Proposed Data Framework
The system that most nearly meets these needs is the World Health Organization’s (1997) International Classification of Impairments, Disabilities, and Handicaps (ICIDH-2). This conceptual model is the revision of the classification system begun in 1980 to elaborate the consequences of diseases, disorders, and injuries that are classified using the ICD. This system has been outlined previously in this volume. For these purposes, suffice it to say that the ICIDH-2 provides a classification system addressing broader dimensions of a person’s life beyond diagnosis. For public health use in disability, there needs to be the opportunity to focus on limitations in activities, regardless of diagnosis. A person’s limitations in moving around, for example, because of cerebral palsy, spinal cord injury, or stroke present similar challenges. This cross-diagnosis approach is well illustrated by “seeing” limitations. Regardless of the reason for having poor vision, similar challenges for mobility, personal care, and domestic activities are present. “Activity limitations” is one of the four dimensions of the ICIDH-2. The ICIDH-2 provides the system for crossing diagnostic groups to permit data collection. Additional important dimensions of the ICIDH-2 include classifications of body functions and structures, such as mental functions or reproductive functions; participation in society, including work, self-determination, social relations, civic events, and so on; and environmental factors, including social attitudes, policies, and systems and physical, built, and communication environments.
This approach to conducting cross-diagnostic data analysis, however, is still in its infancy. Lollar and Fedeyko (1999) and Hough, Campbell, and Lollar (1999) have followed the lead of Hogan et al. (1997) in using the disability supplement of the 1994 to 1995 National Health Interview Survey to generate data using activity limitations, rather than diagnoses, as the framework for classifying persons with disabilities. Data from these analyses allow national and state public health programs to focus on the actual limits experienced by people with disabilities, providing the basis for public health interventions regardless of diagnosis. Instruments to measure participation levels and environmental factors have been developed and are being piloted within the disability community and the general population.
For public health to address the health of people with disabilities, the principal focus should be on preventing additional problems—called secondary conditions—and promoting healthy behaviors and a healthy environment. A secondary condition is defined as any condition to which a person with a primary diagnosis is more susceptible and may include medical, physical, emotional, family, or community problems. A second characteristic often associated with a secondary condition for public health purposes is that it does not have to occur; that is, it can be prevented. There is the need, then, to collect information about the various secondary conditions experienced by people with disabilities. Virtually no emphasis has been given to understanding these various conditions. The prime example of secondary conditions that cross diagnoses is that of skin sores, decubitus ulcers, and pressure sores. This breakdown of skin is not unusual for individuals who have poor sensation, regardless of cause. Skin sores are common for people who experience spina bifida or spinal cord injury. Public health should address this secondary condition across diagnoses. Of course, any medical facility or professional specializing in a particular medical condition, such as spinal cord injury, will treat pressure sores. It is only recently, however, that preventing secondary conditions has received attention as a public health concern.
The concept of prevention acquires a different meaning in the context of secondary conditions. Prevention addresses secondary conditions and is usually associated with health promotion. In this context, prevention loses its negative connotation of preventing the person with a disability from living. Instead, emphasizing the prevention of these conditions creates a positive message to maintain health, participate in societal activities, and increase quality of life. To prevent secondary conditions, we must first identify and count them. In rehabilitation, when a secondary condition appears to occur frequently in a group, programs are initiated to prevent its onset. In public health, however, the approach is broader, may involve medical personnel, but may also include advocacy groups, independent living centers, and community organizations, including fitness centers and churches. The key to public health intervention is the ability to monitor how often a condition is occurring, provide an intervention, and continue to track how many people are affected. Surveillance of secondary conditions is even more challenging than surveillance for limitations across diagnostic groups. An important part of the surveillance of secondary conditions is identifying environmental factors that may contribute to a person’s medical status and general well-being. The lack of reliable transportation may lead to poor physical conditioning, creating vulnerability to respiratory problems as well as depression and social isolation. Appropriate surveillance for secondary conditions requires the capacity to monitor these factors in the environment.
Several instruments have been developed to measure secondary conditions among people with disabilities. Seekins et al. (1990) generated a 40-item surveillance tool for use across diagnostic groups. In fact, one of the most important findings of the early structural analysis was the lack of a relationship between specific impairments and secondary conditions—that is, specific diagnoses did not predict which secondary conditions would be found. Rather, certain secondary conditions clustered in a syndrome-like fashion, and others focused on severity of impairment, regardless of impairment (Ravesloot, Seekins, and Walsh 1997). The “common knowledge” that each medical diagnosis includes its own set of secondary conditions was not supported by the data. While it may be true that certain medical and physical conditions are more associated with particular activity limitations, specific diagnoses are not predictive of secondary conditions. White, Gutierrez, and Mace (1993) reported that 83 percent of independent living center consumers had experienced one or more secondary conditions within the past 6 months. Seekins et al. (1990) indicated that people with disabilities in Montana reported an average of 14 secondary conditions within the past 12 months, suggesting that secondary conditions are common.
Lollar (1997) modified the instrument for use with adolescents, including additional areas, such as social relationships, family conflicts, dependence, and behavior problems. Results indicated that secondary conditions among adolescents differed from those among adults in the Montana study. Also of interest were the results of a stepwise regression analysis indicating that behavior accounted for the largest portion of variance related to the number of secondary conditions. This finding indicates that behavioral, rather than medical or physical, factors contributed most to the presence of secondary conditions.
Krause (1998) developed a 50-item question naire to assess secondary conditions among persons with spinal cord injuries. The instrument included six general categories, five addressing body systems, such as cardiopulmonary or skin, plus psychosocial problems. Results suggest that muscle spasms, urinary tract infections, and muscle or joint pain are the three most prevalent physical secondary conditions during the previous 12 months for the sample.
Data on secondary conditions are just now emerging a sinstruments are developed. The need to collect population-based information on secondary conditions experienced by persons with disabilities is crucial for public health to generate health promotion programs and secondary condition prevention activities.
Data issues abound as public health scientists attempt to use the traditional public health model for addressing issues of disability. Particular interventions are much more clearly associated with specific causative factors related to conditions that contribute to disability. For example, substantial activity limitations can be associated with fetal alcohol syndrome, which leads logically to public health interventions focusing on drinking and pregnancy among women of childbearing age. While the risk behaviors of drinking and pregnancy may be difficult to address, there is clarity of data and science. To varying degrees, primary prevention activities have a clearer connection between the data and its collection and the interventions introduced to reduce the condition associated with disability. On the other hand, identifying secondary conditions among people with disabilities across the life span is neonatal by comparison. As surveillance instruments and data collection mechanisms are developed, secondary conditions will be understood more clearly, common patterns of secondary conditions perhaps related to activity limitations will be delineated, and intervention strategies will emerge with scientific and face validity.
In this section, intervention focusing on health promotion and prevention of secondary conditions among people with disabilities will be emphasized. Although each specific etiology associated with disability has substantial intervention activities, the chapter could not easily encompass them all. Particular interventions addressing prevention of secondary conditions and health promotion for specific conditions will be discussed.
Intervention levels can range from broad policy issues addressing poverty as it affects and is affected by disability, public health education, and the personal level associated with clinical or rehabilitation intervention. Public health intervention differs from clinical intervention, however, in that pubic health interventions usually are framed to influence a broad number of people—the public—rather than individually oriented clinical intervention. This does not mean that public health interventions cannot be implemented in a medical or rehabilitation setting. Instead, the aim is not deficit or medically focused but emphasizes health. Also, public health interventions are preventive in nature—that is, the activities attempt to keep a condition from occurring. Most countries, for example, have injury prevention programs in occupational settings, and many work sites provide health promotion activities, such as smoking cessation programs and fitness centers.
Primary Prevention Activities
Primary prevention activities attempt to keep conditions associated with disability from occurring so that the disabling condition is prevented. Moreover, primary prevention activities also try to target particularly vulnerable groups. For example, the Early Hearing Detection and Intervention (EHDI) program (CDC 1997a)is part of a national effort to improve early hearing screening, diagnosis, and intervention in the United States (CDC 1999a). This program focuses on identifying infants with hearing impairment to prevent communication limitations. Project Choices is an intervention targeting women at high risk for alcohol-exposed pregnancy, including women in jail, in alcohol treatment programs, in primary care settings, and women recruited though a media campaign (CDC 1999a). These are but two of the important intervention programs to reduce the incidence of FAS in children and to prevent the communication problems associated with late diagnosis of hearing impairment.
Secondary Conditions Activities
Specific programs addressing the prevention of secondary conditions among people with disabilities are also being developed. The University of Illinois at Chicago has created a comprehensive health promotion program with three major components (Rimmer and Hedman 1998). These components are exercise, nutrition, and health behavior. Individuals from several diagnostic categories, including stroke, diabetes, Down syndrome, and arthritis, are currently testing the program. Providing transportation for participants, culminating in a 90 percent attendance rate, has alleviated a major barrier to participation in such programs. It is important to replicate programs such as these so that health and wellness can become the focus of individuals with disabilities, rather than simply the absence of disease or illness.
Self-efficacy theory is the basis for another set of interventions. Lorig, Mazonson, and Homan (1993) have developed a self-management approach for individuals with chronic illnesses. Individuals are taught problem solving and decision making and how to tell their story to medical professionals. Lay leaders direct a four- to seven-week course using scripted material to help people know what to expect and to feel safe. Four-year follow-up has shown decreased pain and number of physician visits, with increased self-efficacy in the presence of increased activity limitations—a crucial finding. A parallel approach has been taken by Seekins et al. (1991), who developed Living Well with a Disability. This is a curriculum that has been shown to reduce secondary conditions by 37 percent and outpatient physician visits by 43 percent, when individuals with disabilities who have completed the course are compared with other individuals with disabilities not experiencing the course. Currently, the curriculum is being used by eight independent living centers throughout the United States as a way of obtaining data about the potential cost-effectiveness of such an approach (Seekins and White 1997).
Groups who are at risk for a particular condition are usually identified by epidemiological studies; if people with disabilities were identified as at risk for the occurrence of a certain condition, primary prevention efforts could be focused on them. For example, if cardiovascular disease were associated with people with disabilities, hypothesized due to lack of opportunity to exercise, fitness programs for people with disabilities could be developed, implemented, and evaluated for effectiveness. Cardiac problems would be considered a secondary condition, a preventable condition associated with aspects of the primary disabling condition. Therefore, what is called primary prevention activities would be targeted to preventing secondary conditions among people with disabilities. This approach is more akin to the clinical end of the public health intervention spectrum.
Actually, clinical preventive services (CPS) are at the heart of public health interventions. The Institute of Medicine has defined access as “the timely use of personal health services to achieve the best possible health outcomes” (Millman 1993). Although access to clinical services is person oriented, the objective of providing them is prevention. Clinical preventive service guidelines were outlined in a 1989 report, revised in 1995 (U.S. Preventive Services Task Force 1996). The intent is to provide immunizations, screening tests, and counseling within a clinical setting to prevent disease and detect problems early when treatment is more effective. People with disabilities, again, are limited by the lack of available data to monitor whether they are receiving these services. Only two of the most common clinical preventive services address individuals with disabilities. Both focus on women older than age 55 with a disability and their use of Pap smear tests and mammograms. Data suggest that an equal percentage of women with and without limitations have had at least one Pap smear in their lives, but women with limitations of simple movements, such as reaching and grasping, more frequently do not return for regular exams. Older women and those with more severe limitations are less likely than others to adhere to the recommendations. Women with limitations are also less likely to receive mammo-grams (CDC 1998b).
Predictors of receiving clinical preventive services include having health insurance, higher income, and a primary care provider. To the extent that many people with disabilities are relatively poor, are therefore often on government plans that may not provide CPS, and may have specialty but not primary care, they are at risk for not having the services needed to prevent secondary conditions. In addition, the inaccessibility of clinical offices undermines access to the services.
To the extent that an intervention, however, includes people with disabilities as another part of the “public,” the issue is making sure that this select population has access and information, including materials in Braille or in acceptable formats to facilitate communication. Dissemination of information in various formats is a critical public health issue for people with communication limitations.
Education is another major public health intervention, particularly through the dissemination of community-based materials. The National Arthritis Action Plan (Arthritis Foundation 1999) places great emphasis on increasing awareness of arthritis, the importance of early diagnosis, appropriate management, and effective interventions. Physical Activity and Health (U.S. Department of Health and Human Services [DHHS] 1996) was a report of the U.S. Surgeon General. In that report, educational emphasis was placed on increasing the amount of time spent by elementary school students being physically active in physical education classes. However, children in special education classes often are not identified as being at risk for decreased physical activity, a problem that underscores the need for inclusion of individuals with disabilities in important public health messages and activities.
The broadest level of intervention is at the societal level. Fujiura (1999), LaPlante (1997), and Yelin (1998) report the significant relationship between disability and socioeconomic status. Disability may predispose one to lower socioeconomic status, and low-income status may predispose one to disability. While the exact nature of the relationship is unclear, the association is, nonetheless, strong. Hogan et al. (1997) and Bresloski et al. (1999), in addition, have shown that for families that have a child with an activity limitation(s) and adults with activity limitations, having less than a high school education accounts for much of the variance associated with racial or socioeconomic differences. While not directly the mandate of public health, it is clear that interventions to increase educational attainment or achievement and increase employment rates are extremely relevant to people with disabilities.
Given the breadth of data pursued and the range of interventions, public health outcomes are also in the eye of the beholder. Outcomes in primary prevention, for example, are the presence of a spinal cord injury or a particular birth defect, such as spina bifida. The reduction of these events is the desired outcome of a public health intervention. This approach to outcomes is relatively straightforward on the surface. Count the number of children born with spina bifida, for example, before and after an intervention to increase the consumption of folic acid by women of childbearing age, and the outcome is apparent. Of course, at each step of the process, there are substantial barriers. “Counting the number” requires having personnel who will be diligent in reporting each case—whether in a relatively small geographical area, such as metropolitan Atlanta, or progressively larger areas, such as a state, region, or nationally. Consistent counting is much more difficult than it appears. “With spina bifida” requires consistent identification. While spina bifida is usually identifiable at birth, there is no consistent reporting from hospitals. Moreover, in some conditions, such as FAS or autism, identification does not come at birth but later. Criteria for deciding if a child has the condition are often difficult to identify reliably. “Before and after intervention” on a national scale assumes good condition identification and reliable reporting across time, and it assumes the intervention is going to be evenly implemented across whatever population is being targeted. In the case of folic acid consumption, even when the target group is women of childbearing age—not a small group in any country—outcomes are complicated. A second intervention-related level of outcome is added, usually the percentage of women who report taking sufficient folic acid in their normal eating regimen or by supplement. Outcomes become nested, one relating to another.
Spinal cord injury is another example of an outcome targeted by public health interventions. The approach is to use hospital data as a method for tracking the number of individuals coming to hospitals and diagnosed with a spinal cord injury. Information about the cause of the injury and circumstances surrounding the injury and demographic information is collected. Analysis of these data allows public health staff to establish factors most related to the injury (e.g., 18- to 35-year-old men) and develop intervention strategies at this group. This might include media campaigns to increase seat belt use or to discourage diving into unknown bodies of water. As the interventions begin, the outcome sought is a decrease in spinal cord injuries related to these causes in this age group.
Public health outcomes related to secondary conditions are much more difficult to put into effect. For people with disabilities, the outcomes are actually the opportunity to participate in life activities on a par with everyone else in the society. Traditionally presented, public health would focus only on physical or medical outcomes that undermine participation. The World Health Organization, however, has conceived health as not just the absence of disease but as the presence of vitality, and the goals include physical, social, and spiritual well-being. This, of course, substantially broadens the potential outcomes to be addressed by public health professionals. Outcomes could then not only include the actual levels of participation in activities and the negative physical conditions that contribute to that loss of participation but could also address issues of access to health care from both a physical perspective (“Can I get to the physician’s office?” or “Can I get into the physician’s office?”) to systems access (“Are assistive devices covered by my medical plan?”). Environmental barriers can be as toxic to the health of people with disabilities as water or air pollution.
In the broad area of public health outcomes, numerous summary measures of health status have been developed, including years of healthy life and quality-adjusted life years (QALYs).
QALYs have been the accepted U.S. Public Health Service metric for summary health. This measure combines costs with quality-of-life assessment so that economic and person-centered factors are included. Years of healthy life makes the assumption that “healthy” life includes those without a disability. This assumption again equates disability with lack of health, interpreted as illness. WHO, along with the World Bank, has sponsored a project to develop and implement the Global Burden of Disease Study at Harvard University (Murray and Lopez 1996). The basis for the project is to attempt to measure the impact of various conditions on the overall health status of people around the world. The outcome measure generated is called disability-adjusted life years (DALYs). Unfortunately, the developers have chosen to equate any “nonfatal health outcome” with disability (Hough 1999). Actually, the better term for this construct would be morbidity, as described earlier. While the goal of the project is an important one, equating morbidity with disability continues the tension between public health and disability communities. The actual conceptual, methodological, and statistical problems with the approach have been covered elsewhere in this volume; suffice it to say that DALYs represent an additional element to increase suspicion of the public health community by the disability community.
As with every area of endeavor, public health surveillance and research activities should be grounded by the participation of persons with disabilities from the questions asked to the design, implementation, analysis, and dissemination of scientific information. This approach is not the traditional one taken by public health to any scientific study, but communities are beginning to be involved in public health activities. Community in the usual public health approach is defined geographically. When there has been, for example, a concern that an environmental hazard threatens the lives and health of a community, public health staff have become sensitized to the need to involve the community in planning and implementing its assessment and intervention strategies. The concept of community was expanded during the HIV/AIDS epidemic when public health activities targeted the community of homosexual men. The disability “community” again requires expansion of the concept, beyond geography and lifestyle. Diversity is present in the disability community, but the disability perspective must be represented throughout public activity activities.
Given the broad range of public health data, interventions, and outcomes, numerous issues arise. Surveillance issues first emphasize the need for a case definition. That is, if one is to count the number of persons with a condition, that condition must be defined. In primary prevention activities, the case definition is usually associated with a diagnosis (e.g., cerebral palsy or traumatic brain injury) often made by a medical staff member. If, on the other hand, one is striving to identify “people with disabilities” to assess whether their level of participation in school or work or community activities parallels everyone else in the society, defining “people with disabilities” can be enormously challenging. Medical personnel may equate a diagnosis with disability. People with a diagnosis, however, may not identify themselves as having a disability or even a limitation, except that created by environmental barriers. In addition, certain groups of individuals with limitations may be excluded from surveys. For example, people with hearing impairments may not be able to respond to telephone surveys. Individuals with mobility limitations may not be able to get to a telephone before the survey staff hangs up. Persons with learning limitations may be viewed as unreliable in their responses. Research to close these gaps should continue until all gaps are filled.
Problems also arise when research projects are designed to address the needs of people with disabilities. Again, environmental barriers can reduce involvement among those interested in participating (Rimmer and Hedman 1998). Transportation, for example, may also affect retention in the studies (White 1998). In the United States, an additional research issue is framed by emphasis on costs of intervention and the effectiveness of interventions from a cost perspective. As presented earlier, QALYs are an attempt to integrate cost and quality-of-life measures into a summary measure. For people with disabilities, developing a case for interventions to prevent secondary conditions and promote health is a particularly challenging one. Data such as that presented by Kinsman and Doehring (1996) reported that 47 percent of hospital admissions of adults with spina bifida over an 11-year period were due to secondary conditions, which were potentially preventable. These types of data are needed to highlight the need for appropriate interventions. Work by Seekins et al. (1996) has provided evidence that self-help groups targeting preventing and managing secondary conditions have decreased secondary conditions by 37 percent and have decreased physician visits by 45 percent over a six-month follow-up period. A comparison group not receiving the intervention did not show similar results.
In those instances when financial issues may not be as pertinent, other research issues may arise. The Royal College of Physicians (1998) in the United Kingdom published a charter and guidelines, titled Disabled People Using Hospitals. This document grew out of a 1992 charter that outlined the needs of people with disabilities in hospitals and by the 1995 Disability Discrimination Act. This document is important for several reasons, including the cooperative efforts of physicians and consumers in the project, the community-based approach, and the potential for more services for people with disabilities. Research is now needed to evaluate the degree to which the guidelines are being implemented and the impact of this effort on the health of people with disabilities.
Public Health and Disability Communication
A new sense of opportunity is emerging across the world as well as a developing convergence of new and focused direction for the disability community. The disability movement continues to be strengthened through organizations such as Disabled Peoples’ International (DPI) (Hurst 1999) and Rehabilitation International. Public health disability researchers are as likely themselves to have a disability as not. Also, many of those who do not currently experience a disability are in close collaboration with those who do. Disability advocates are intimately involved with public health directions and issues, demonstrated most clearly in DPI’s executive director chairing the World Health Organization’s Environmental Task Force for revising the ICIDH-2. Public health’s awareness of issues related to people with disabilities is growing. Public health history, then, is being changed by this participatory action in both research and policy. The glow of positive change, however, cannot overshadow substantial issues that still exist. Still, the first major direction is the conversation that is developing between public health professionals and the disability community.
Domzal (1995) has presented the 50 or so different definitions of disability included in U.S. statutes. The United Nations (1996) has also indicated the varied and diagnostically oriented definitions of disability in countries responding to United Nations questions about disability surveillance. For the purpose of clarifying policy and program issues, more consistent constructs must be used to identify people who experience disabilities. Definitions have tended to emphasize medically related information as a proxy for disability. A second major public health emphasis is clarifying definitions and a framework for disability.
With collaboration from advocates in the disability community, public health is drawing closer to establishing a common framework from which surveillance, policy, and programmatic activities can emerge. The ICIDH-2, providing a broad framework in which “disability” refers to the overarching construct, can provide that unifying approach. For public health purposes, it is crucial to distinguish among body functions, the person’s activities or limits in those activities, and the person’s participation in the society, as well as to acknowledge the influence of the environment at each of these levels of experience. Otherwise, if these various dimensions are mixed together for counting purposes, there will always be confusion about which factors affect which. Public health historically has used a linear model focusing exclusively on the body functions or dysfunctions of the person, and that assumes the person’s body dysfunctions and activity limitations are totally responsible for the individual’s lack of involvement in the society (e.g., not working). Environmental factors were excluded because of the difficulty in measuring them. ICIDH-2 provides the opportunity to clarify the conceptual framework, differentiate the varied constructs, and provide clearer definitions of dimensions and a classification system. In the coming years, such a unifying effort across public health and disability communities should continue to be strengthened.
The most important reason to address defintional and conceptual questions is to increase awareness of the needs and concerns of people with disabilities around the world. A second reason, however, specifically relates to another major public health issue outlined in this chapter. Primary prevention activities, using the ICIDH-2 perspective, address preventing conditions that can create “impairments” at the body function or structure level. Public health professionals may be concerned about the morbidity associated with these impairments, but they are generally less or not at all concerned with the person-level activity limitations, restrictions in societal participation, or environmental factors that affect health and well-being. The nuances are less important than the actual impairment. Rather than continuing to confound public health data, policy, and programs, awareness of the different constructs related to disability can provide the basis for integration of public health efforts.
Public Health Perceptions
A third basic issue emerges from this discussion—using people who have disabilities in media campaigns as examples of the negative results of “risk behaviors” by the general population. Public health must move beyond its tendency to devalue the lives of people with disabilities in the name of preventing disability. Impairments, even personal limitations, should not be portrayed as inimical to the human condition. This tendency builds mistrust among people with disabilities for anything associated with public health and also is a barrier to public health professionals seeing people with disabilities as a population at risk for other health concerns.
At the heart of this issue is the human tendency to find ways to categorize and place value and to stereotype on the basis of imputed inferiority. Public health, truth be told, is but one part of the global society that fears the loss of perceived physical, mental, or emotional perfection sufficiently to place less value on the lives and experiences of those with limitations. If, indeed, there is still survival of the fittest, then people with disabilities must be the fittest, given the physical, social, and policy barriers to be overcome. The public health community, however, must acknowledge that portraying images of people with disabilities in primary prevention media campaigns demeans the life experience of people with disabilities. This is no way to make a case for encouraging or discouraging targeted behaviors, whether wearing seat belts to reduce spinal cord injuries or taking folic acid to reduce the incidence of neural tube defects.
The public health sector is a part of those mapping the human genome (Khoury 1997). People with disabilities are concerned that this activity will lead to public health decisions that once again devalue the experience of disability to the extent of trying to eliminate those people who have certain genetic makeups that are associated with impairments or limitations. The need for including people with disabilities in the decision-making processes about the use of genome mapping is crucial. In addition, people with disabilities in the United States cannot separate this discussion from the current assisted-suicide debate, in which some medical doctors are moving the line between “death with dignity” for those with terminal illness closer to assisted suicide for people with varied disabilities (Hahn 1998). Those in the fields of public health and disability must use every mechanism at their disposal to discuss these gravely important issues.
Healthy People with Disabilities
A fourth significant and positive contribution, which public health is making to people with disabilities, is the development of health objectives for the year 2010. Healthy People is the national public health agenda, begun for 1990, continued for 2000, and moving into the new millennium (U.S. DHHS 1998). While several countries, including the United Kingdom (1993) have long-term health objectives, these objectives have dealt mostly with primary prevention activities. For the public health objectives for the year 2010, the U.S. Department of Health and Human Services began an initiative to include objectives for people with disabilities. These objectives have provided an opportunity to frame important issues of health and well-being for people with disabilities. Dr. Gro Brundtl and (1999), the current World Health Organization director general, has stated that “health is a basic human right.” She described health as “physical, mental and social well-being which includes participation in the full range of personal and social activities” (p. 57). The Healthy People 2010 chapter, “Disability and Secondary Conditions,” outlines basic directions for the future, encompassing the elements of well-being outlined by Dr. Brundtland.
The objectives in this chapter have been to address major health and well-being concerns for people with disabilities. These include standard data items to identify people with disabilities across health surveys in the United States, a demographic-like variable. This will allow the opportunity to describe people with disabilities along with other select populations, such as sex, race, ethnicity, and socioeconomic status. Sufficient emotional support and assistance will be an objective for both children and adults with disabilities. Emphasis on increasing social participation and life satisfaction is included. Objectives emphasize increasing employment rates of people with disabilities to those without disabilities and increasing regular education time for students with disabilities. Reducing the negative impact of environmental barriers for people with disabilities is also discussed, with additional emphasis on ensuring that, consistent with the Americans with Disabilities Act (ADA), health and wellness facilities and treatment programs be fully accessible to people with disabilities. Other objectives are increasing the use of appropriate assistive technology and devices. Eliminating institutions for children with developmental disabilities and reducing by half the number of adults with developmental disabilities living in institutions are another objective. Finally, the last of the 13 objectives focuses on implementing disability and health programs in each state, territory, and tribal unit in the United States. Surveillance activities and health promotion programs are needed both for people with disabilities and for caregivers.
The history of public health and disability has been long and often filled with tension. There is still tension, but the outlines of a new relationship around the world can be seen. Several public health directions are beginning and will require considerable attention in the coming years to further strengthen the growing commitment to improving the health of people with disabilities.
Developing a public health framework, which can be used throughout the world, will be a first and major step. While this activity may seem of little importance, global acceptance of a mutually acceptable set of concepts and terms by public health and the disability community will provide the atmosphere for significant growth. The World Health Organization’s inclusion of people with disabilities in the revision of its ICIDH-2 is a major step forward. In addition, the United Nations’ disability statistics activity to standardize questions about disability for census and surveys globally using the WHO framework will provide further continuity and direction. The development of a disability-friendly summary health measure is also critical. This, however, will require continued challenging of measures, such as DALYs, which maintain an antiquated notion of disability. Finally, instruments that assess the role of environmental factors on health and well-being will be crucial if data are to influence policy.
From the standpoint of policy development, there will need to be continued efforts to eliminate the disparities in access to medical and other health services. The sources may be as diverse as medical staff’s negative attitudes, poor or no transportation to health care facilities, or equipment that does not accommodate the needs of people with disabilities. In addition, public health mechanisms could be the conduit for evaluating environmental barriers that undermine the health of people with disabilities. Public health personnel are in a unique position to influence medical and health care policy, already possessing a population perspective. The implementation of universal design principles could be evaluated through public health mechanisms across these settings. Public health could lead in this venture to improve the health and well-being by eliminating the environmental barriers to medical and health care. Of course, as with other interventions, these would improve the lives of all people, not just those with disabilities. Public health now has the opportunity to be partners with the disability community, encouraging societal participation, eliminating environmental barriers, and improving health and well-being.