Persons with Disabilities and Public Health Ethics
Abstract and Keywords
This chapter draws on medical, social, and legal perspectives to identify and highlight ethical issues pertaining to the treatment, representation, and inclusion of persons with disabilities in public health policy and practice. A brief history of disability in the United States is provided as a context for examining the key ethical issues related to public health policy and practice. Conceptual frameworks and approaches to disability are then described and applied. The chapter then discusses the imperativeness of expanding access to public health programs by persons with disabilities, the need to address implicit and structural biases, and the importance of including persons with disabilities in public health decision-making.
(p. 219) Introduction
Disability is a complex term that can be defined and conceptualized in numerous ways. While the medical model conceptualizes disability as a problem or impairment localized in the individual body or mind, a social perspective suggests disability is a phenomenon created by social oppression and prejudices on society’s construction of what is “normal” versus “abnormal.” Disability can also be examined within a legal framework. Laws and public policies have changed and adapted over time as the conception of disability has evolved in the medical, social, and political contexts. Disability is now explicitly defined under US law, and individuals with disabilities are granted certain rights and protections.
The chapter will begin with a brief historical perspective of disability in the United States as a context for examining key ethical issues related to public health policy and practice. The chapter will then examine the ethical dimensions of practice and policy flowing from medical, social, and legal perspectives on disability in public health.
Disability and Public Health: Historical Perspectives
Federal programs and data and surveillance systems have differing definitions of disability, so there is no single definition that has been adopted for use in all laws and policies. Nonetheless, six questions used in the American Community Survey are reflected in (p. 220) US federal law as the data standard for survey questions on disability (HHS, 2011). These include questions relating to whether an individual has serious difficulty hearing, seeing, walking or climbing stairs, dressing or bathing, doing errands or concentrating, and remembering or making decisions because of a physical, mental, or emotional condition. Based on a definition suggested by these questions, there are approximately 61 million adults living with disabilities in the United States (Okoro et al., 2018). Disability rates vary by age, with the prevalence of disability increasing with age. Non-Hispanic black and Hispanic adults are more likely to have a disability than are white non-Hispanic adults. Those with lower education levels, lower incomes, and who are unemployed are also more likely to report a disability.
The United States has a long history of excluding and mistreating persons with disabilities. Changing social and political perspectives on poverty during the seventeenth and eighteenth centuries in Europe and the United States, together with the increasing medicalization of disability during the nineteenth and twentieth centuries, resulted in increasing segregation and stigmatization of persons with disabilities (Braddock and Parish, 2001). Indeed, beginning in the 1800s, persons with disabilities were institutionalized and segregated from society (Braddock and Parish, 2001). Institutionalization hit its peak during the 1950s. Also during the twentieth century, women with disabilities were often involuntarily sterilized (Braddock and Parish, 2001). The 1970s marked the beginning of the deinstitutionalization movement, resulting in persons with disabilities being increasingly integrated into their communities.
Progress has been made in reducing discrimination against and segregation of individuals with disabilities since the passage of the Americans with Disabilities Act of 1990 (ADA), a civil rights law prohibiting discrimination. Nonetheless, studies show that persons with disabilities have poorer health than persons without disabilities, and many health issues related to their health status are preventable. Moreover, compared to persons without disabilities, persons with disabilities are more likely to be unemployed, live in poverty, and participate in social safety-net programs (Brucker and Houtenville, 2015).
Implications for Public Health
Historically, the needs of persons with disabilities have often been unrecognized in public health, and efforts to address these needs since the 1990s have been sporadic and fragmented (Krahn, Walker, and Correa-De-Araujo, 2015). Public health professionals and researchers increasingly recognize that the needs of persons with disabilities must be integrated into all facets of public health, and that disability-related disparities are inequities. Yet few state public health departments have taken specific steps to address these inequities. In the United States, federal agencies with responsibility for public health often fail to include disabled people in public health programs, policies, and research. One notable exception is the Disability and Health Program within the National Center on (p. 221) Birth Defects and Developmental Disabilities at the US Centers for Disease Control and Prevention (CDC), which since 1997 has funded state capacity-building to improve the health and well-being of persons with disabilities in some states. Nonetheless, a 2016 public health survey, conducted by the National Association of County and City Health Officials (NACCHO), found only 11 percent of local health department administrators recognized persons with disabilities as a population that experiences health inequities (Leser et al., 2016). Although a large number of public health professionals reported including persons with disabilities in emergency preparedness efforts, only between 16 and 47 percent reported including persons with disabilities in health promotion programs such as tobacco cessation, obesity prevention, or screenings (Leser et al., 2016).
In 2002, the Public Health Leadership Society (PHLS) issued “Principles of the Ethical Practice of Public Health” (PHLS, 2002). This code of ethics was designed for reference and use by US public and other institutions with explicit public health missions, and it was subsequently adopted by the American Public Health Association. Underlying the code’s twelve principles is the belief that human beings are interdependent and that people and their environments are interdependent as well (PHLS, 2002). This perspective is consistent with more contemporary conceptualizations of disability. For example, the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), discussed below, goes beyond the individualistic orientation of the medical model and emphasizes the interaction of individuals with their physical and social environments. The PHLS principles go further to state that “public health should advocate and work for the empowerment of disenfranchised community members . . . [and] be implemented in a manner that most enhances the physical and social environments” (4). Given the historical disenfranchisement of individuals with disabilities, the code demands an emphasis on comprehensive public health efforts to benefit persons with disabilities at the national, state, and local levels, and places an important and necessary focus on the interaction between the person and the environment.
Conceptual Frameworks and Approaches to Disability
To better identify some key ethical issues pertaining to disability in the United States, three distinct conceptual frameworks might be considered. A purely medical model represents a traditional approach to disability, although it has less influence currently because of its limited considerations of the environment. The social model, which emphasizes society’s role in influencing group identity and oppression, is considered the “new paradigm,” although it also has not gone without criticism (Beaudry, 2016). Finally, the legal framework provides historical context on how US policy has changed as the understanding of what it means to be disabled has evolved.
(p. 222) Medical Model
Historically, public health research and policies related to improving the well-being of persons with disabilities were based on a traditional “medical model,” which considers disabilities to be defects that harm a person’s functioning (Shakespeare, 2006). Under this view, persons with disabilities are assumed to have worse health than nondisabled people, which makes disparities inevitable, uninteresting, and even unimportant. This perspective leads practitioners, researchers, and policymakers to consider how persons with disabilities are different and inferior, and it perceives persons with disabilities as inherently limited in their ability to be included fully in society (Evans, 2004). This medical model offers insufficient answers to key questions about the health of persons with disabilities, as examining individual impairments fails to explain the wide gaps in health, function, and access to care between persons with and without disabilities (Meade, Mahmoudi, and Lee, 2015).
The social model of disability, developed in reaction to the medical model, argues that the health of persons with disabilities depends on external and contextual factors—namely, the interaction between individuals and their physical and social environment (Shakespeare, 2006). Health is therefore affected by the degree to which persons with disabilities enjoy full rights and inclusion in society. The social model yields novel questions about the social determinants of health and health care disparities for persons with disabilities. Consistent with other disparity populations (e.g., racial and ethnic minorities), public health research and policies focused on the physical and social environment are crucial in terms of understanding and reducing disability-based disparities (Drum et al., 2005).
In 2001, the WHO published the ICF, a framework that integrates the medical and social models of disability. The ICF framework defines disability as an umbrella term that includes bodily impairments, activity limitations, or participation restrictions that relate to a health condition. Hence, these limitations, which interact with personal and contextual factors of the environment, result in disability. The ICF framework is viewed as the most widely accepted model of disability in public health, although the United States has been slow to adopt it (Iezzoni and Freedman, 2008; Krahn et al., 2015).
Nondiscrimination, the Americans with Disabilities Act, and Related Laws
Two laws, the landmark Americans with Disabilities Act (ADA) and its predecessor, the Rehabilitation Act of 1973, established national mandates prohibiting discrimination based on disability. Collectively, these vital laws prohibit public and private health (p. 223) care providers from discriminating on the basis of disabilities and ensure persons with disabilities have an equal opportunity to participate in and benefit from health care services.
The Rehabilitation Act of 1973 was the first federal civil rights law to protect persons with disabilities. The most well-known provision of the Act is Section 504, which prohibits discrimination against persons with disabilities under any program or activity that receives federal financial assistance.1 Hence, health care entities and providers that receive federal monies through Medicaid or Medicare must comply with the Act.
On July 26, 1990, President George H. W. Bush signed the ADA into law, extending the protections and prohibitions of the Rehabilitation Act to private entities. Titles II and III of the ADA prohibit disability discrimination and require health care providers to be physically and programmatically accessible to persons with disabilities. Health care providers have legal obligations to comply with the ADA unless they can prove that doing so would cause an undue burden or fundamentally alter the service.
Despite these requirements, health care facilities and services are often not fully accessible. Although national data are unavailable, a recent survey of nearly 2,400 primary care facilities serving Medicaid patients in California revealed that fewer than half of the facilities were fully architecturally accessible, only 8.4 percent had accessible examination tables, and less than 4 percent had accessible weight scales (Mudrick et al., 2012). Moreover, according to Krahn et al. (2015), persons with disabilities often receive incomplete medical examinations because equipment such as weight scales, exam tables, and mammography equipment do not accommodate their disability. Notably, in 2013 the United States Architectural and Transportation Barriers Compliance Board (US Access Board, 2013) released standards to define accessibility of medical equipment. However, the standards are voluntary, and no research yet exists on their effectiveness.
Laws Relating to Health Care for Persons with Disabilities
Although the ADA was a significant step forward in advancing the rights of individuals with disabilities, it failed to improve access to private health insurance due to its inclusion of a “safe harbor” provision for health insurers, which permitted them to continue discriminatory practices, such as denying coverage for persons with preexisting medical conditions, as long as those practices were “based on or not inconsistent with state law” and not “used as a subterfuge to evade the purposes of” the ADA.2 This provision has been construed to permit insurers to exclude individuals from or limit their health coverage if such exclusions or limitations are “based on sound actuarial principles or related to actual or reasonably anticipated experience”3 (EEOC, 1993). The Patient Protection and Affordable Care Act of 2010 addressed this interpretation of the ADA by prohibiting the use of preexisting condition exclusions in individual health insurance policies.4 This change in insurance practices increases access to individual private health insurance coverage among individuals with disabilities.
Public Health Law and Policy Relating to Persons with Disabilities
Public health was historically the province of the states as one of the powers reserved to them by the Tenth Amendment of the US Constitution. Within the last century, however, (p. 224) the federal government has increasingly relied upon its spending power and its authority under the Constitution’s Supremacy Clause. That clause establishes the primacy of federal law over state law to implement various public health policies and practices nationwide through the CDC and other federal agencies. The federal government’s efforts to exercise its authority in the field of public health have generally been guided by traditional public health principles emphasizing a population focus and prevention orientation coupled with considerations of social justice (Gostin, 2016).
With respect to disability, the principles requiring a focus on population health and prevention have historically been interpreted as requiring a focus on primary prevention, with disability viewed primarily as an outcome that public health initiatives should endeavor to minimize in the general population. Only recently has an understanding of the principle of social justice begun to change the perception of persons with disabilities as a distinct social group who have the same rights to health and well-being as others, and who deserve access to the resources necessary to make that possible.
Ethical Dimensions of Public Health Approaches
Expanding Access to Public Health Programs
Despite the increased awareness of the health needs of persons with disabilities in the United States, persons with disabilities still fare significantly worse than those without disabilities on most health indicators. Persons with disabilities report higher rates of smoking, lack of daily moderate and vigorous physical activity, and higher rates of overweight and obesity. They also report higher rates of chronic diseases, such as asthma, diabetes, hypertension, and cardiovascular disease. Other challenges include negative clinician attitudes, inaccessible medical equipment, and lack of information and knowledge from health care providers (Mitra et al., 2015).
Social justice has been described as “captur[ing] the twin moral impulses that animate public health,” which are “to advance human well-being by improving health and to do so particularly by focusing on the needs of the disadvantaged” (Gostin, 2016, 18). Health equity, then, is essential to the ethical practice of public health. The emphasis on social justice in public health has resulted in efforts to reduce health disparities through a variety of measures. For racial and ethnic groups, these efforts included the creation of the federal government’s Office of Minority Health, which the Affordable Care Act subsequently imbued with greater importance by placing it high up in the administrative hierarchy in the Office of the Secretary of the Department of Health and Human Services. Health disparities experienced specifically by persons with disabilities, however, have not received the same level of recognition and resources, and they have not been included in these equity initiatives (Krahn et al., 2015).
(p. 225) Public health research and policies concerning multiple identities of persons with disabilities and how disabilities intersect with other identities and affect access to health care has slowly emerged. This emergence is noteworthy, as intersectionality—defined as the recognition that multiple social categories such as race, ethnicity, gender, and disability status intersect at the micro level to reflect macro-level systems of oppression—provides an important framework for public health (Bowleg, 2012). Notably, the limited existing research on intersectionality indicates that people of color with disabilities, as well as lesbian, gay, bisexual, and transgender (LGBT) individuals with disabilities, experience additional significant disparities and difficulties accessing care as a result of their multiple identities and the many layers of discrimination they face (ACMH, 2011; Tarasoff, 2016).
Research indicates that disability is more prevalent among non-Hispanic blacks, which has been attributed to low socioeconomic status, as well as environmental and social factors and poorer health status (Courtney-Long et al., 2015; Goyat, Vyas, and Sambamoorthi, 2016; Kubzansky et al., 2001). The increased rates of disability among racial minorities are notable because studies have revealed that persons of color with disabilities are more likely to experience substantial health care disparities. For example, the life expectancy for whites/Caucasians with Down syndrome is about fifty-five years compared to twenty-five years for blacks/African Americans with Down syndrome (ACMH, 2011). Jones and Sinclair (2008) found persons with both mobility limitations and minority status experienced greater health disparities than adults with either minority status or mobility limitations alone. Moreover, a recent study revealed that Latino and black adults with intellectual and developmental disabilities (IDDs) had worse health outcomes compared to white adults with IDDs, as well as worse health outcomes than nondisabled adults from the same racial and ethnic group (Magaña et al., 2016). These findings indicate that significant gaps in health persist, and that further research is needed to understand the impact of social determinants on the health of persons with disabilities, particularly those from racial and ethnic minority groups.
Likewise, the prevalence of disability is higher among LGBT adults compared with heterosexual adults, which has been attributed to health-related behaviors, decreased access to health care, and socioeconomic factors (Fredriksen-Goldsen, Kim, and Barkan, 2012; Landers and Gilsanz, 2009). Public health research concerning LGBT persons with disabilities is scarce, but it indicates that this population, particularly youth, experience multiple stigmatized identities, which impacts access to appropriate health care (Duke, 2011). Moreover, LGBT persons with disabilities may have an increased need for mental health services, and may face many challenges to accessing appropriate care and services (Olkin, 1999).
Addressing Implicit and Structural Biases
Implicit and structural biases have a negative impact on trust and health care outcomes for persons with disabilities and other historically marginalized communities. Emerging evidence indicates that health care providers, similar to the general population, hold implicit biases (Green et al., 2007; Sabin et al., 2009). In its 2003 report titled Unequal Treatment, the US Institute of Medicine (IOM, now the National Academy of Medicine) (p. 226) concluded that implicit bias against members of a social group may negatively affect communication or the care offered to those individuals (IOM, 2003). Structural bias, which is defined by Schulz and Mullings (2006) as the “privileging [of] some groups and denying others access to the resources of society,” can also result in significant health disparities (quoted in Yearby, 2011, 87).
Remarkably, research has found that the attitudes of physicians and other health care providers toward persons with disabilities are as negative as those of the general public, if not more so (National Council on Disability, 2009; Pendo, 2008). Indeed, the difference between health care providers and persons with disabilities in evaluating life with disability is striking. For example, in a survey of attitudes of emergency care providers, only 18 percent of physicians, nurses, and technicians believed they would be glad to be alive with a severe spinal cord injury, as compared to 92 percent of persons with a high spinal cord injury who reported they were glad to be alive (Gerhart et al., 1994). More recently, Hausmann et al. (2015) found that health care providers harbored implicit bias toward persons with spinal cord injuries, which can lead to worse outcomes for patients.
Structural biases also impact the ability of persons with disabilities to access appropriate health care. Persons with disabilities are disproportionately poor and are more likely to receive publicly funded health insurance (i.e., Medicaid or Medicare), limiting access to certain health care providers (National Council on Disability, 2009). Limited transportation options also create significant barriers to accessible and appropriate health care providers (National Council on Disability, 2015). Other structural biases experienced by persons with disabilities include professional training and competency of providers, inadequate or no health insurance coverage for visits to specialists, and poor physical access to usable and adapted or specialized examination and diagnostic equipment (National Council on Disability, 2009; Pendo, 2008).
Public health professionals must address the implicit and structural biases experienced by persons with disabilities to ensure that public health practice upholds the principles of social justice. One strategy is to provide training that addresses implicit bias and discrimination. The results of the 2014 NACCHO survey (Leser et al., 2016) demonstrate the need for additional training of local health department staff to ensure that they understand the health needs of persons with disabilities, and to ensure their inclusion in local public health programs. This has led to a response by public health officials. Healthy People 2020 is a federal framework issued by the US Department of Health and Human Services that provides ten-year national goals to improve American health. Significantly, one objective is to “increase the number of Tribes, States, and the District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers” (ODPHP, 2016). In addition, NACCHO has a Health and Disability Project, which provides local health departments with “practical strategies and recommendations to promote the inclusion and engagement of people with disabilities in the planning, implementation, and evaluation of public health programs, products, and services” (NACCHO, 2016).
Similarly, medical providers require additional training in caring for persons with disabilities. Krahn et al. (2015, S203) note that “[e]very major report addressing the poor health of persons with disabilities has called for improvements in the training of health care providers.” These include reports issued in 2002 and 2005 by the Office of the (p. 227) Surgeon General and a 2009 report by the National Council on Disability (HHS, 2002, 2005; National Council on Disability, 2009). The IOM has similarly acknowledged that “today’s physicians may be poorly prepared to meet the complex medical and psychosocial needs of people with disabilities” (Field and Jette, 2007, 130).
Empowerment and Procedural Justice
The ethical practice of public health demands greater attention to policies and programs that integrate and address the needs of persons with disabilities and that require representation of persons with disabilities in the decision-making process to define and clarify what their needs are in the social and political contexts in which they live. Increased systematic collection and analysis of data regarding this population are critical, particularly to inform programs that focus on health, wellness, and the prevention of secondary conditions for persons with disabilities. These efforts will require the allocation of resources to reduce the physical and social barriers to participation. A significant increase in resources for both data collection about and participation of persons with disabilities is ethically justifiable to ensure parity in public health and the integration of considerations about disability in all programs.
Reducing these barriers also requires training the public health and health care workforce to enhance their willingness and capacity to engage individuals with disabilities in decision-making. Training should be supported by providing health professionals with appropriate infrastructure and by holding them accountable both for legally required accessibility standards and for developing administrative processes, grounded in procedural justice, that include community stakeholders, such as persons with disabilities, in decision-making.
It is also critical to include persons with disabilities in health research. According to Krahn et al. (2015, S203), “routinely including people with disabilities in general health research will help close the knowledge gap on effective interventions.” Some notable efforts to this end at the federal level include the establishment of the Interagency Committee on Disability Research (ICDR) in 1978 and implementation of requirements to include persons with disabilities in public health research and programs by agencies such as the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILLR); the Agency for Healthcare Research and Quality (AHRQ); and the CDC (CDC, 2006; US Department of Education, 2012; AHRQ, 2016). Notwithstanding some efforts to include persons with disabilities in public health decision-making, the inclusion of persons with disabilities should be required on decision-making panels in public health and health policy agencies.
This chapter has drawn on medical, social, and legal perspectives to identify and highlight key ethical issues pertaining to the treatment, representation, and inclusion of disabled persons in public health policy and practice. A public health approach, grounded (p. 228) in social justice, supports local, state, and federal policies and programs that aim to reduce discrimination and stigmatization of persons with disability, as well as their higher risk factors for chronic disease or chronic disease catalyzers, such as physical exercise and smoking. Public health professionals, animated by PHLS principles to “ensure that the basic resources and conditions necessary for health are accessible to all,” should advocate for programs and resources that address health disparities arising from biological impairment and the social and political context.
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(1.) Rehabilitation Act of 1973, as amended, 29 U.S.C. §§ 794 et seq.
(2.) Americans with Disabilities Act of 1990. Public Law 101–336. 108th Congress, 2nd session §§ 12131 et seq. (July 26, 1990).
(3.) 749 H.R. Rep. No. 45, 101st Cong., 2d Sess., pt. 3, at 70 (1990).
(4.) Patient Protection and Affordable Care Act. 42 USC. §§ 4302, 5307, and 4203; 2010.