27.5: People with Disabilities
By the end of this section, you should be able to:
- Define disability.
- Describe the health barriers individuals with disabilities face.
- Discuss the health needs of the population of individuals with disabilities.
- Examine how the health needs of individuals with disabilities intersect with the social determinants of health.
- Identify the nurse’s role in caring for individuals with disabilities.
Individuals with disabilities make up a large minority group in the United States, with over 61 million individuals (approximately one in four people) affected (CDC, 2020g). Disabilities occur across all ages, genders, and racial, ethnic, and social groups. The WHO describes disability as an “interaction between an individual’s functional impairments or chronic health conditions and the physical and social environment” (Mitra et al., 2022, p. 1380). In contrast, the medical model often defines disability as an impairment in a person’s body or mind that results in difficulty doing certain activities and interacting with the environment around them (CDC, 2020e). There are many types of disabilities affecting vision, movement, thinking, remembering, learning, communicating, hearing, mental health, and social relationships (CDC, 2020e).
Institutional discrimination , lack of disability cultural competency in health professional curricula, and systemic barriers in the health care system result in significant health disparities between individuals experiencing disabilities and those who are not (National Council on Disability [NCD], n.d.). Health disparities for individuals with disabilities who are BIPOC or living in rural areas are even more significant (Crankshaw, 2023; Steinweg, 2023). Despite the Americans with Disabilities Act (ADA) of 1990 and the Amendments Act of 2008, which mandate equal access to health care services, disparities result from physical inaccessibility of health care settings, inadequate accommodations for communication, ableist discrimination, and implicit and explicit biases among health care staff (Lagu et al., 2022). Ableism is the intentional or unintentional discrimination against individuals with disabilities (National Conference for Community and Justice [NCCJ], 2021). This population often experiences unaccommodating health care settings and substandard care. Discriminatory attitudes among health care staff perpetuate health disparities and discourage individuals with disabilities from seeking care (Lagu et al., 2022).
Many Healthy People 2030 objectives relate to improving the health and well-being of individuals with disabilities . These objectives highlight the importance of promoting the health and well-being of all individuals, regardless of ability, to reduce health disparities and achieve health equity. Recall that health disparities are preventable differences in health between groups of individuals, usually due to social or economic factors, geographic location, environment, or ability.
Health Barriers Experienced by Individuals with Disabilities
Individuals with disabilities face frequent barriers to optimal and equitable care, including an inaccessible physical environment, a lack of assistive technology for communication, a lack of understanding, and negative attitudes.
Many physical barriers may prevent individuals from obtaining health care. Individuals with mobility disorders may have difficulty accessing health care facilities due to unaccommodating sidewalks, curbs, and stairs. Inside the building, stairs, small rooms, immobile exam tables, and standing scales that do not accommodate wheelchairs are additional barriers. ADA regulations for equitable or accessible physical spaces relate only to fixed structures and do not include medical equipment, furnishings, or diagnostic equipment (Iezonni et al., 2022). For example, a lack of accessible equipment for routine Pap smear screening and mammography screening is common (CDC, 2020a). While hospitals may be more likely to have appropriate equipment for individuals with disabilities, most private health care professional offices and outpatient facilities do not (Iezonni et al., 2022).
Negative attitudes toward individuals with disabilities impact health care encounters and contribute to disparities in health outcomes. Data from implicit attitude testing among health care professionals across all disciplines has revealed a pervasive ableist bias (Iezonni et al., 2022). In a 2019–2020 national survey, more than 80 percent of outpatient physicians felt that individuals with significant disability have worse quality of life than nondisabled individuals, and only 40 percent thought they could provide the same quality of care to clients with disability as they do to those without (Iezonni et al., 2022). These assumptions affect the quality of care this population receives. Health professionals often fail to ask appropriate health screening questions or to actively listen to these clients (CDC, 2020a). For example, in one study health care providers did not ask clients with disabilities about sexual activity and therefore failed to screen them appropriately for human papillomavirus and cervical cancer (Iezonni et al., 2022). By stereotyping individuals with disabilities as being unhealthy or having a poor quality of life, nurses and other health care professionals perpetuate stigma and health care disparities.
Another barrier experienced by individuals with disabilities is the lack of person-first language. Instead, the language focuses on the disability versus ability. Person-first language refers to people first to separate the person from a diagnosis or impairment (Crocker & Smith, 2019). An example is referring to a group of children as "children with intellectual disabilities" versus "intellectually disabled children" or referring to "clients with sensory disorders" rather than "sensory disorder clients". The goal is to focus more on the person rather than the diagnosis to decrease the stigma of a disability or condition. It also contradicts the mindset that everyone with a certain diagnosis is the same (Crocker & Smith, 2019). There is also a push toward identity-first language that views the individual’s disability as a large part of that person’s identity. For example, the Deaf community is opposed to person-first language as they view deafness as a medical condition that should not be stigmatized (Crocker & Smith, 2019). While person-first language is often taught in health care programs, it is often not used in the clinical setting, creating another barrier for clients with disabilities (Crocker & Smith, 2019).
If nurses and other health care providers do not receive adequate training to practice culturally sensitive care to clients with disabilities, this creates a barrier to care. In this video, Melissa Crisp-Cooper shares her health care experiences as an individual with a disability.
Watch the video, and then respond to the following questions.
- What are some barriers to receiving quality health care Melissa experienced?
- What are some potential strategies to mitigate these barriers?
- How can the community health nurse address disparities in caring for individuals with disabilities?
The CDC describes communication, programmatic, social, and transportation as other common barriers making it difficult for individuals with disabilities to function.
Communication Barriers
The ADA requires local and state governments, businesses, and nonprofits serving the public to communicate effectively with individuals who have communication disabilities (ADA.gov, 2020). Although it is an ADA violation for businesses to require clients to bring another person to interpret or assist in communication (ADA.gov, 2020), many health care providers do not accommodate alternative communication styles. In a large study, physicians reported relying on clients’ caregivers to overcome communication barriers and often communicating solely with the caregiver, leaving the client with the disability out of the conversation completely (Lagu et al., 2022). These physicians reported cost and time commitment as challenges to accommodating this population’s communication needs (Lagu et al., 2022). Many outpatient providers allot 15 minutes for a client visit, but they may need more time to accommodate alternate means of communication, including working with interpreters and providing health promotion education materials in large print, Braille, or versions made for screen readers (CDC, 2020a). Some auditory messages, such as oral communication or videos, can be inaccessible for individuals with hearing impairments without American Sign Language interpretation or captioning (CDC, 2020a).
Programmatic Barriers
Programmatic barriers include a lack of accessible equipment or adequate time for medical examinations, inopportune scheduling, and providers’ attitudes, knowledge, and understanding of people with disabilities (CDC, 2020a). As discussed previously, there are many physical barriers to accessing quality care, including access to equipment. Clients with disabilities that affect mobility, hearing, seeing, or cognition may require more time for a quality health encounter. Given current reimbursement models and the push to see a certain number of clients per hour, the lack of adequate time for examination is burdensome to many providers (Lagu et al., 2022).
Social and Transportation Barriers
Social barriers to care refer to those SDOH that adversely affect health outcomes. Individuals with disabilities are less likely to have completed high school or be employed and are more likely to have low income levels (CDC, 2020a), placing them at increased risk for economic insecurity, greater adversity, higher levels of chronic stress, and ultimately poorer health outcomes. Additionally, children with disabilities are four times more likely to experience violence, another factor impacting overall poor health (CDC, 2020a). This population may face transportation barriers, including a lack of access to transportation for individuals who cannot drive due to vision, cognitive, or mobility impairments (Figure 27.7) (CDC, 2020a). Economic insecurity may limit access to a private vehicle for those who can drive. Health visits can become less of a priority without easy access to transportation.
Health Needs of Individuals with Disabilities
In the United States, individuals with disabilities are three times as likely as individuals without disabilities to have arthritis, diabetes, and a heart attack and five times as likely to report a stroke, chronic obstructive pulmonary disease (COPD), and depression (NCD, 2023). Individuals living with disabilities are more likely to be obese and have unmet medical and dental needs. Women with disabilities often are not referred for routine pap smears and mammography, and pregnant clients with disabilities have 11 times the risk of maternal death of those without disabilities (NCD, 2023).
This population is at greater risk for victimization —purposely perpetrated violence and abuse—than nondisabled individuals. Victimization commonly occurs at home and in hospitals and includes physical and sexual violence, emotional abuse, and neglect of personal needs, medical care, or equipment. Almost 12 percent of adults with a disability were victims of sexual assault compared to 4 percent of adults without a disability (CDC, 2020f). Children with disabilities are more than twice as likely to be physically or sexually abused as children without disabilities (CDC, 2020d). At every health care encounter, these individuals should be screened appropriately for abuse and treated with a trauma-informed lens. Trauma-informed care is an approach to providing clinical care that encourages a culture of safety, empowerment, and healing for clients (Rittenberg, 2018). For individuals who have experienced sexual assault, victimization, or any other trauma, experiences in a health care facility where they are asked sensitive questions, told to remove clothing, undergo invasive testing, or perceive an overall differential in power can be frightening (Rittenberg, 2018). Using a trauma-informed lens means the nurse and health care provider work together to explain why they are asking certain questions or performing certain exams, taking the time to build a rapport with the client. See Caring for Populations and Communities in Crisis for more information on trauma-informed care.
Individuals with disabilities are more likely to report having overall poorer health and engaging in risky health behaviors such as smoking and physical inactivity than individuals without disabilities (CDC, 2020c). Obesity is more common in children and adults with mobility limitations and intellectual disabilities, resulting in potentially serious health consequences of metabolic syndrome, heart disease, and diabetes (CDC, 2019b). This population may be more vulnerable to preventable health problems and may experience secondary conditions such as pain and fatigue because of their disabling condition.
In addition to poorer physical health, individuals with disabilities report much higher rates of stress and depression than nondisabled individuals (CDC, 2020d). The good news is that many of this population’s health needs are preventable, so health care providers and nurses can intervene at a primary prevention level to effect meaningful change for these clients. With this high-risk group, nurses must consistently apply the many evidence-based strategies to combat smoking and physical inactivity.
How Individuals with Disabilities Intersect with the Social Determinants of Health
The health needs of individuals with disabilities intersect with the SDOH, as other forms of marginalization affect the health disparities among this population (Mitra et al., 2022). Transgender adults have much higher rates of disability compared with cisgender men and women, leading some to consider disability from an intersectionality lens—that is, to consider the intersection of disability with other categories of disadvantage such as gender identity, age, and racial and ethnic status (Smith-Johnson, 2022).
In 2018, more than a quarter of individuals with disabilities in the United States lived below the federal poverty level , compared with 10 percent of the nondisabled population (Semega et al., 2021). Poverty is often the result of unemployment, poor educational access, and discrimination (Engelman et al., 2022). Engaging in meaningful work is an essential aspect of a healthy, economically stable adulthood. Unemployment or inability to work is often associated with economic insecurity and poverty, resulting in direct adverse determinants of health. Across all age groups, individuals with a disability are much less likely to be employed, with an unemployment rate twice as high in this population as in that of their nondisabled counterparts (U.S. Bureau of Labor Statistics, 2023).
A person’s neighborhood can positively or negatively impact their health. For example, a neighborhood’s “walkability” affects the physical mobility of walkers and those with mobility difficulties who are at increased risk for many chronic diseases for which inactivity is a risk factor. Adults with disabilities perceive fewer neighborhood environmental supports and more barriers to walking than their nondisabled counterparts (Omura et al., 2020). Barriers to walkability include a lack of sidewalks, safe walking paths, and curb outlets for wheelchairs.
Like other historically marginalized populations with lower socioeconomic positions, this population is disproportionately affected by environmental conditions like climate change and extreme weather. For example, heat waves adversely impact individuals with spinal cord injuries, diabetes, heart disease, and other neurological conditions (Engelman et al., 2022). While air conditioning helps, not everyone can afford it or the electricity associated with its use. Cooling centers may be inaccessible due to distance, transportation issues, medical conditions, and facility barriers. This is the intersection between disability, lack of employment, and poverty (Engelman et al., 2022).
The Nurse’s Role in Caring for Individuals with Disabilities
The role of the community and public health nurse in caring for individuals with disabilities spans the three core functions of public health nursing: assessment, policy development, and assurance. The public health nurse should assess their community’s health needs and collect and trend data on the health outcomes of vulnerable populations. Using this data, nurses can appropriately educate health care professionals, organizations, businesses, and clients and devise effective policies to address health care issues and gaps. The public health nurse should then follow up to ensure policies are being implemented.
The inclusion of individuals with disabilities in society involves removing barriers that inhibit their full participation and requires a multifaceted approach that includes (CDC, 2020b):
- Addressing discrimination to allow all individuals to access fair treatment
- Using universal design to make the physical environment and communication space accessible to as many people as possible
- Working to eliminate stigma and stereotypes associated with disabilities
- Providing reasonable accommodations
Additionally, nurses should market community health programs to everyone, including individuals with disabilities. These individuals need these programs, just like everyone else, to engage with and be a part of the community.