Ableism and Its Effects on Patient Outcomes Essay
Ableism and Its Effects on Patient Outcomes Essay
Topic Definition: Ableism in the 21st Century
Although discrimination is recognized as a major social issue and has been addressed for quite a while, some of its forms persist in contemporary society (Nario-Redmond, Gospodinov, & Cobb, 2017). Ableism is one of these forms, and it affects people’s lives to a considerable degree, causing significant distress (Wax, 2015). By definition, ableism is a form of discrimination based on people’s disabilities (Nario-Redmond et al., 2017).
The rationale for Choosing the Topic
The reasons for choosing the identified issue as the topic for discussion are quite obvious. Ableism makes people with disabilities face significant inconveniences in a range of scenarios (e.g., the absence of a wheelchair ramp, the use of ableist language that labels the identified population in a negative way, etc.). Thus, the tools for managing the problem and reducing the levels of ableism in contemporary society must be introduced. Furthermore, the cause of the issue must be explored so that further instances of discrimination against people with disabilities should be prevented successfully. Ableism and Its Effects on Patient Outcomes Essay.
Purpose of the Study: Determining the Solutions
The purpose of the study is to examine the nature of ableism and define the nursing strategies that can possibly reduce its effects and, at best, eliminate the phenomenon completely. To be more specific, the tools for spreading awareness among the community members, as well as the means of providing support to the disabled, will be studied.
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Goals of Exploring the Topic
The goal of the study is to determine the nature of ableism and introduce the tools for managing it. Furthermore, the coping strategies for the disabled will be designed. Ableism and Its Effects on Patient Outcomes Essay. Thus, the negative effects of the phenomenon will be reduced significantly.
References
Nario-Redmond, M. R., Gospodinov, D., & Cobb, A. (2017, March 13). Crip for a day: The unintended negative consequences of disability simulations. Rehabilitation Psychology, 1(1), 1-10. doi:1037/rep0000127
Wax, A. (2015). Putting the ‘‘ability’’ back into ‘disability’. Industrial and Organizational Psychology, 7(2), 253-255. doi:10.1111/iops.12143
Disability is an emerging field within public health; people with significant disabilities account for more than 12% of the US population. Disparity status for this group would allow federal and state governments to actively work to reduce inequities. We summarize the evidence and recommend that observed differences are sufficient to meet the criteria for health disparities: population-level differences in health outcomes that are related to a history of wide-ranging disadvantages, which are avoidable and not primarily caused by the underlying disability. We recommend future research and policy directions to address health inequities for individuals with disabilities; these include improved access to health care and human services, increased data to support decision-making, strengthened health and human services workforce capacity, explicit inclusion of disability in public health programs, and increased emergency preparedness.
People with disabilities have largely been unrecognized as a population for public health attention, but recent efforts have made the poor health of this population visible.1 Adults with disabilities are 4 times more likely to report their health to be fair or poor than people with no disabilities (40.3% vs 9.9%).2 The core mission of public health, which is to improve the health of all populations,3,4 is increasingly framed in terms of health disparities or health inequities. Ableism and Its Effects on Patient Outcomes Essay. Across the amultiple definitions of health disparities and inequities,5–8 there is general agreement that health disparities refer to differences in health outcomes at the population level, that these differences are linked to a history of social, economic, or environmental disadvantages, and that these differences are regarded as avoidable.
The World Health Organization (WHO) differentiates avoidable and unjust health inequities from the broader category of health inequalities, which include both inequities and unavoidable differences. Comparable terms in the United States are health disparities, which refer to avoidable and unjust differentials, and health differences, which refer to avoidable and unavoidable causes. Within a disability context, determining disparities is complex, in that it requires considering which observed differences in health status are avoidable, and which may be unavoidable because they relate directly to the underlying health condition that led to the disability. In this article, we summarize the available evidence on health differences and disparities and recommend that people with disabilities be considered a health disparity population.
Race/ethnic health differences are recognized as inequities in health care and health outcomes, leading to recent concerted federal efforts to reduce these disparities.9 Similar recognition, however, has been lacking for disability-related health differences. Without such recognition and active measures to improve their health, people with disabilities are likely to be at risk for increasingly disparate health outcomes. As a consequence, public health will carry an unnecessary burden in poor health and high health care costs. We examine whether the disability population experiences health disparities by: Ableism and Its Effects on Patient Outcomes Essay.
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defining this population,
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describing its history of discrimination and exclusion,
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documenting the population-level differences in health outcomes,
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demonstrating that at least some of these differences are preventable, and
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recommending public health actions to reduce disability-related disparities.
PEOPLE WITH DISABILITIES
Some people are born with a disabling condition (e.g., Down syndrome) or demonstrate a condition early in life (e.g., autism, bipolar disorder), whereas others acquire disabilities through injury (e.g., spinal cord injury) or a chronic condition (e.g., limb loss because of diabetes), and still others develop a disability in later stages of life (e.g., dementia, age-related mobility disability). The health needs of people with disabilities vary with the type of limitation (e.g., mobility or cognitive) and by the condition underlying the disability (e.g., spina bifida, Down syndrome). For some, such as people who acquire disability through injury, the nature of their disability can be differentiated more readily from their health status. Ableism and Its Effects on Patient Outcomes Essay. For others, their health status may directly lead to their disability (e.g., diabetes leading to limb loss and vision loss). Race/ethnicity, age, language, sex or gender, poverty, and low education can compound the impact of disability, leading to even poorer health and quality of life.10,11 People with disabilities are a diverse group who share the experience of living with significant limitations in functioning and, as a result, often experience exclusion from full participation in their communities.
In 2001, the WHO published a framework that integrated previous models of disability. This framework, the International Classification of Functioning Disability and Health (ICF) for adults (2001) and for children and youth (2007),12,13 has been adopted internationally and is useful for many public health purposes. In the ICF framework, disability is used as an umbrella term to include bodily impairments, activity limitations, or participation restrictions that relate to a health condition. These limitations, which interact with personal and contextual factors of the environment, result in disability. That is, a disability results from the interaction of having a condition-based limitation and experiencing barriers in the environment. The environment includes not only the physical environment, but also social factors like culture, attitudes, economics, and policies that shape our life experiences. Environmental factors significantly affect health-related and functional outcomes, and can foster or impede good health and a high quality of life. Ableism and Its Effects on Patient Outcomes Essay.
The ICF model is the most accepted model of disability in public health,14 but its adoption in the United States has been slow. This may be because the ICF is based on a model of social participation, and not on the medical model that is still predominant in the United States. Use of the ICF would require coding changes to billing and administrative systems that may not seem justified because of difficulties in applying ICF qualifiers in real-world situations, such as the clinical environment, and because of a lack of practical tools for its use. To address the latter problem, the WHO recently endorsed and released “How to Use the ICF: A Practical Manual for the ICF.”15 Two further developments are encouraging and may result in future adoption and adaptation of the ICF framework by different US federal agencies. First, on January 2, 2013, the US Social Security Administration, under federal register docket no. SSA-2012-007, published a notice to solicit collaboration from the public and federal agencies to evaluate the ICF for use by the Social Security Administration to assess disability and to capture data related to functioning.16 Second, on January 1, 2013, clinicians and administrators began a 6-month pilot test of Medicare’s mandated claims-based functional data collection. These new requirements apply to physical therapy, occupational therapy, and speech language pathology outpatient therapy services provided in any setting. This mandated functional status reporting system has associations with the ICF; general categories of functional impairment (G codes) that therapists can use to meet Centers for Medicaid and Medicare requirements are based on the ICF taxonomy and represent aspects of functioning addressed in rehabilitation therapies.17
Defining Disability for Public Health Surveillance
Disability has been defined differently across federal agencies, national data systems, and international frameworks. For example, in 2003, there were no fewer than 67 US federal statutory definitions of disability.18 Definitions that determine eligibility for services and supports, such as Social Security Disability Insurance and Supplemental Security Income, are understandably restrictive to limit the number of beneficiaries, whereas others that guarantee protection of rights, such as in the Americans with Disabilities Act, are deliberately inclusive to provide antidiscriminatory protection to a broad group of people. Ableism and Its Effects on Patient Outcomes Essay. Definition differences also reflect an evolution in our understanding of disability and its relationship to health, the relative value society has placed on people with disabilities, and how program eligibility or legal protections have been addressed. Studies have drawn on data that used different definitions and referred to different segments of this population. Lack of comparability across studies has been a major obstacle to developing a solid body of evidence on the health status, health differences, and the health disparities of this population.19
For the first time in 2000, the US Department of Health and Human Services (HHS) blueprint for the nation, Healthy People, included a specific chapter on goals and objectives for the disability population.20 The first disability objective in Healthy People 2010 called for use of a standardized set of questions to identify people with disabilities in surveys. This was not achieved by 2010 and was continued as a disability objective in Healthy People 2020.4 With passage of the Affordable Care Act (ACA) in 2010, Section 4302 required data collection standards be used for race/ethnicity, sex, primary language, and disability status. This Healthy People objective was achieved in October 2011 when HHS established data standards for defining disability in public health surveys.21 These standard questions across the life span ask about
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deafness or serious difficulty in hearing (all ages);
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blindness or serious difficulty in seeing (all ages);
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serious difficulty in concentrating, remembering, or making decisions because of a physical, mental, or emotional condition (5 years or older);
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serious difficulty walking or climbing stairs (5 years or older);
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difficulty dressing or bathing (5 years or older); and
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difficulty doing errands alone (e.g., visiting a doctor’s office or shopping) because of a physical, mental, or emotional condition (15 years or older).
An affirmative response to any of these questions is considered a disability.
Because surveys have counted disability in different ways, prevalence estimates in public health surveys have ranged from 12% to 30%.2,22 Although sampling and data collection methods have varied, these differences in prevalence estimates relate primarily to how disability is defined and what level of severity qualifies for disability status. Ableism and Its Effects on Patient Outcomes Essay. The recently established HHS standards for data collection specify “seriously limited,” which results in approximately 12.5% of the general US adult population being considered disabled. Other data sets that measure mild-to-moderate limitations include substantially larger portions of the population.2 Among people who report serious limitations, 46% report mobility disability, 39% report problem-solving or concentration limitations, 26% report hearing, and 21% report vision, with 43% reporting more than 1 limitation.23
Disability Across the Life Course
A life course perspective recognizes that health trajectories are particularly affected at certain times in life: (1) health status results from the cumulative impact of experiences in the past and the present, (2) the environment affects the capacity to be healthy and function effectively in society, and (3) health disparities reflect inequities that go beyond genetics and personal choice.24 For children and youths, the term “special health care needs” is used more frequently in public health than “disability,” and includes many children who experience functional limitations. Children with special health care needs have been defined as
those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.25(p138)
When youths with disabilities or special health care needs transition from pediatric care into adult service systems, they and their families often encounter major barriers with health systems that are unprepared to provide adequate health care for their complex needs.26
The cumulative impact of experiences over the life course result in prevalence rates of disability as a proportion of the population that increase with age. Figure 1 is based on the new HHS standards, and demonstrates that by age 85 years and older, two thirds of Americans report functional limitations.Ableism and Its Effects on Patient Outcomes Essay. In the overall population, however, the majority of people with disabilities are younger than 65 years, and one third are ages 44 to 65 years, which are the prime years for contributing to the workforce.23
Weighted population estimate of adults with disabilities and adults without disabilities by age group: National Health Interview Survey, United States, 2010.
HISTORIC DISADVANTAGE FOR PEOPLE WITH DISABILITIES
Disadvantages for people with disabilities are documented by a long history of legislation and legal rulings to address discrimination and exclusion. Dating back to the mid-19th century, common practice in the United States and some European countries was to institutionalize children and adults with significant disabilities. Life in these institutions was often far from idyllic, and by the mid-20th century, media exposure of the dire life circumstances in institutions galvanized calls for their closure.27Involuntary sterilization of women with disabilities in institutions was reflected in the eugenics movement. Following a 1927 Supreme Court ruling, the state’s power to conduct forced sterilization was upheld (Buck v Bell), and was legal until recently in almost half of the US states.28,29 Beginning in the 1960s and 1970s, advocates concertedly pressed for de-institutionalization so that children with disabilities could be raised by their families, and adults could participate in their communities with needed services and supports.
Federal legislation and programs have led the development of services and supports. Title V of the Social Security Act was passed in 1935 and provided resources to all states for services to children with crippling or handicapping conditions. Today, one third of the Title V Maternal and Child Health Block Grant to states must be spent on children with special health care needs.30 Clinical demonstration programs authorized by Congress in 1957 rapidly expanded to become the Health Services and Resources Administration’s interdisciplinary training programs for pediatric care of children with disabilities.Ableism and Its Effects on Patient Outcomes Essay. In the subsequent decades, health care professionals who trained through these programs transformed health care for children and youths with neurodevelopmental and other disabilities. Similar training is not available for the care of young and older adults with disabilities.31 The dilemma of adolescent transition illustrates the growing pressure on our national health care and public health systems to adequately address the existing and future health needs of people with disabilities across their life course. Problems in accessing community-based, quality, and appropriate health care in a timely way have been lamented for decades; these problems were recently summarized.32
In 1963, Congress established the Administration on Developmental Disabilities (now Administration on Intellectual and Developmental Disabilities) state-based networks of university-based teaching and research centers, state councils for grass-roots mobilization, and civil rights protection and advocacy centers. This network of programs serves as a model internationally for collaboration at the state and national levels to improve all facets of the lives of people with developmental disabilities.
A free and appropriate public education in the United States was only guaranteed to children with disabilities with the passage of the Education of All Handicapped Children Act of 1974 (subsequently Individuals with Disabilities Education Act). Section 504 of the Rehabilitation Act of 1973 was the beginning of substantive federal legislation protecting persons with disabilities from discrimination and promoting opportunities for independence and self-determination. This was followed in 1990 with the Americans with Disabilities Act (ADA), the world’s first comprehensive legislation on the declaration of equality for people with disabilities.33 Protection from discrimination in employment, programs, and services provided by public entities (including transportation), public accommodations, and telecommunications was provided by the ADA as passed in 1990 and amended in 2008.34. Ableism and Its Effects on Patient Outcomes Essay.
Opportunities and supports for independent living in the community have progressed notably over the past several decades. The Independent Living movement mobilized disability advocates in pressing for support to live independently in the community. However, many people with significant disabilities who were not living with their families were still cared for in institutional settings at the discretion of the state. It required a Supreme Court ruling, the Olmstead decision of 1999, to uphold the right for a person with disabilities to live in the most integrated setting. That ruling held that unjustified institutionalization constitutes discrimination.35 In response, states have expanded efforts to develop alternative ways of funding and providing community-based services and supports.36 This history of discrimination and institutionalization has contributed to the health differences observed today.
DOCUMENTING POPULATION DIFFERENCES IN HEALTH OUTCOMES
As a group, people with disabilities fare far worse than their nondisabled counterparts across a broad range of health indicators37–39 and social determinants of health. Table 140–43 presents a number of population indicators that are drawn primarily from the Data Indicators Warehouse for Healthy People 2020,40 where goals of a 10% population-level change are often regarded as aspirational. Although the gaps in individual indicators may not be dramatic, their cumulative effects are. Ableism and Its Effects on Patient Outcomes Essay. Adults with disabilities are 2.5 times more likely to report skipping or delaying health care because of cost.2,44Because people with some disabilities require more health care for management of their disabling conditions or increased risk of some chronic conditions, measurement of failure or delay in receiving needed care is important rather than comparing receipt of care. At the same time, women with mobility limitations are less likely to be current in mammograms and Pap tests.
TABLE 1—
Population Differences Between People With and Without Disabilities on Health Indicators of Health Care Access, Health Behaviors, Health Status, and Social Determinants of Health: United States
| Health Indicator | People With Disabilities (%) | People Without Disabilities (%) | Data Source |
| Health care access | |||
| In past year, needed to see doctor but did not because of costa | 27.0 | 12.1 | BRFSS 2010 |
| Women current with mammograma | 70.7 | 76.6 | BRFSS 2010 |
| Women current with Pap testa | 78.3 | 82.3 | BRFSS 2010 |
| Health behaviors | |||
| Adults who engage in no leisure-time physical activitya | 54.2 | 32.2 | NHIS 2008 |
| Children and adolescents considered obese (aged 2–17 y)b | 21.1 | 15.2 | NHANES 1999–2010 |
| Adults who are obesea,b | 44.6 | 34.2 | NHANES 2009–2010 |
| Adults who smoke (100 cigarettes in lifetime and currently smoke)a | 28.8 | 18.0 | NHIS 2010 |
| Annual no. of new cases of diagnosed diabetes (per 1000 persons)a | 19.1 | 6.8 | NHIS 2008–2010 |
| Adults with cardiovascular disease | NHIS 2009–2011 | ||
| 18–44 y | 12.4 | 3.4 | |
| 45–64 y | 27.7 | 9.7 | |
| Victim of violent crime (per 1000 persons)a | 32.4 | 21.3 | NCVS 2007 |
| Adults reporting sufficient social and emotional supporta | 70.0 | 83.1 | BRFSS 2010 |
| Social determinants of health | |||
| Adult (> 16 y) unemployment | 15.0 | 8.7 | CPS 2011 |
| Adult (> 16 y) employment | 17.8 | 63.6 | CPS 2011 |
| Adults with < high school education | 13 | 9.5 | BRFSS 2010 |
| Internet access | 54 | 85 | NOD 2010 |
| Household income < $15 000 | 34 | 15 | NOD 2010 |
| Inadequate transportation | 34 | 16 | NOD 2010 |
Note. BRFSS = Behavior Risk Factor Surveillance System; CPS = Current Population Survey; NCVS = National Crime Victimization Survey; NHANES = National Health and Nutrition Examination Survey; NHIS = National Health Interview Survey; NOD = National Organization on Disabilities Survey of Americans with Disabilities; Pap test = Papanicolaou test. All differences reported are statistically significant. Most of these data were drawn from the HP2020 Data Indicators Warehouse40 additional sources used for mammograms and Pap tests,41 and violence.42
People with disabilities consistently report higher rates of obesity, lack of physical activity, and smoking.2,45 Some also have higher rates of newly diagnosed cases of diabetes, and their percentages of cardiovascular disease are 3 to 4 times higher.46,47Although they have higher rates of chronic diseases than the general population, adults with disabilities are significantly less likely to receive preventive care.48,49 As an illustration, people with cognitive limitations are up to 5 times more likely to have diabetes than the general population47 while potentially receiving less adequate management care.44,50 Inclusion of people with disabilities is critically important as agencies coordinate efforts51 to prevent and manage chronic diseases and conditions like diabetes, cardiovascular disease, and hypertension. Ableism and Its Effects on Patient Outcomes Essay.
Injury is known to be a leading cause of disability, but what is less well recognized is the heightened risk of injury (both unintentional injury and violence) among children and adults who already have a disability. Disability status is as great or greater a risk for unintentional injury than age, sex or gender, race, or education.52–54 People with disabilities are 1.5 times more likely to be victims of nonfatal violent crimes than people with no disability, and more than twice as likely to report rape or sexual assault compared with people without a disability.42 Women are victimized more often than men, and people with cognitive disabilities have the highest rates of violent victimization.42 Both men and women with disabilities are at significantly increased risk for intimate partner violence.55 Mental distress such as depression or anxiety is a common concern for people with disabilities who are also less likely to report receiving adequate social and emotional support.56,57
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Inequalities in Preparedness and Health Insurance
Emergency preparedness is a safety issue of special concern for this population. There is inadequate data collection on emergency planning for people with disabilities, but what is available indicates this is an especially vulnerable time for this population. For example, during Hurricane Katrina, 38% of people who did not evacuate to safety had a mobility disability or were a care provider for a person with a disability.58
Rates of insurance coverage are generally comparable between disability and nondisability populations,2,45 but the nature of coverage differs. Ableism and Its Effects on Patient Outcomes Essay. Approximately 75% of people without disabilities have private health insurance, but fewer than 50% of people with complex limitations (severe disabilities) are privately insured.2 Furthermore, although public insurance provides coverage for many people with disabilities, it does not cover all people, and the greatest gaps are felt by people with emotional disabilities; 28% are uninsured.2 Even with insurance, people with disabilities are much more likely (16% vs 5.8%) to miss getting needed care because of cost.44
Inequalities in Health Determinants
A social determinants approach to health explicitly recognizes the importance of the social environment, individual behaviors, and health services in addition to biology and genetics.4 On virtually all measures of social determinants, adults with disabilities fare poorly. The current experience of living with a disability is associated with more likelihood of not having a high school education (13% vs 9.5%) and much less likelihood for employment (21% vs 59%),40 less access to the Internet (54% vs 85%), much more likelihood of having an annual household income less than $15 000 (34% vs 15%), and inadequate transportation (34% vs 16%).43
People who have systematically experienced the economic and social disadvantages of poverty and discrimination face greater obstacles to optimal health.9 These experiences of disadvantage, discrimination, and difficulties in accessing health care and health promotion services contribute to unhealthier lifestyle behaviors and poorer mental health, creating a cycle of more chronic conditions, poorer health, and increasing functional limitations. Ableism and Its Effects on Patient Outcomes Essay.
