As defined by the U.S. Surgeon General's Call to Action in 2005, disabilities are characteristics of the body, mind, or senses that, to a greater or lesser extent, affect a person's ability to engage in some or all aspects of day-to-day life. Approximately one in four individuals in the U.S. self-identify as having a disability. As such, healthcare providers, educators, policymakers, and the population at large have a responsibility to promote accessible and comprehensive healthcare and wellness promotion services that support persons with disabilities. Furthermore, to ensure that persons with disabilities receive appropriate and culturally competent healthcare, it is imperative that healthcare educators teach about disability and future healthcare providers learn to treat the whole person, not just the disability. This chapter highlights a few of the many barriers that are experienced by persons with disabilities and the impact of insufficient knowledge and awareness on the delivery of quality care.
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Approximately 15% of the world’s population lives with some form of disability (World Health Organization, 2021), and 1 out of 4 Americans self-identify as having a disability (Okoro et al., 2018). The Americans with Disabilities Act (ADA), a U.S. federal law passed in 1990, defines a person with a disability as one who has a physical or mental impairment that substantially limits one or more major life activities. This includes people who have a record of such an impairment, even if they do not currently have a disability (Americans with Disabilities Act, 1990). Congress later passed the ADA Amendment Act (ADAAA) of 2008 to expand the definition of disability, thereby rejecting the inappropriately high standards applied by courts to the term “substantially limits” and increasing the number of “major life activities” covered by the ADA (ADA Amendments Act, 2008). Disabilities can be categorized into non-apparent (e.g., psychiatric or learning disability, attention deficit disorder, chronic health conditions, traumatic brain injuries, etc.) and apparent disabilities (e.g., physical or mobility disabilities, deaf or hard of hearing, blind or low vision, intellectual or developmental disabilities, etc.). Persons who are protected by the ADA and ADAAA may not be discriminated against on the basis of their disability (Americans with Disabilities Act, 1990; ADA Amendments Act, 2008).
Persons with disabilities receive fewer preventative screenings, less health education, and inadequate emergency care (Carmona & McCabe, 2005; Healthy People 2010 Final Review, 2012; Iezzoni & Agaronnik, 2020; The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities, 2005). Furthermore, studies have cited health disparities in areas that include Pap testing (Iezzoni et al., 2016), mammograms (Andresen et al., 2013; Iezzoni et al., 2015), and treatments for colorectal cancer (Gofine et al., 2018) and lung cancer (Iezzoni et al., 2008), among others (Agaronnik et al., 2022; Iezzoni, 2022; Iezzoni et al., 2022). In one study, most of the practicing physician participants had superficial or incorrect knowledge of their legal obligations when treating patients with disabilities (Agaronnik et al., 2019). Iezzoni and colleagues subsequently surveyed physicians and found that 35.8% of those surveyed knew little or nothing of their legal obligations under the ADA, 71.2% did not know who determines reasonable accommodations, and 68.4% felt they were at risk for ADA lawsuits. These physicians reportedly felt that a lack of formal training or medical education dedicated to these topics was a barrier to their understanding of the needs of persons with disabilities (Iezzoni, Rao, Ressalam, Bolcic-Jankovic, Agaronnik, et al., 2022).