Improving Healthcare Access for Patients with Disability

Steffie* is a nurse who became paraplegic following a spinal cord injury. When she began experiencing “unbearable” pain due to what she believed was appendicitis, she went to the emergency room following her doctor’s advice. Eight hours later, Steffie was sitting alone in a treatment room with no access to a call bell, no assistance to use the restroom, and no medication to ease her pain—the ER physician and staff “kept telling me that I shouldn’t be in pain because I’m a paraplegic.”¹

Adriana is a woman with cerebral palsy. At prenatal visits in her first pregnancy, she was dropped three times—by her doctor and ultrasound technicians—during transfers to an exam table. The first drop occurred when Adriana was four months pregnant and the physician lost her grip on Adriana during transfer. Adriana fell and landed directly on her belly. One week later, she began bleeding. At the hospital, an ultrasound confirmed all was well with the pregnancy, but Adriana remained hospitalized for a week.²

Harry is deaf, and for his first testicular examination, his clinician did not hire an American Sign Language interpreter to accommodate communication with Harry. The doctor began the testicular examination without explaining the procedure or its purpose. Harry later said, “I was scared. I didn’t know if I was being molested or raped, or if this was a sexual advance.… They forget I’m deaf.”³

About 73.4 million adult Americans (28.7 percent of those 18 or older) report having a disability, as do over 3 million children (4.3 percent of those under age 18).⁴ Across the lifespan, nearly everyone experiences some type of disability—and anyone can become disabled in a flash with a major trauma or debilitating health event. Nevertheless, despite its near universality, disability remains frequently stigmatized, and disabled people confront substantial disadvantages in education, income, employment, housing, transportation, and other social drivers of health. In healthcare settings, people with disability face erroneous assumptions about their lives, values, and expectations that contribute to inequitable healthcare and worsen their health outcomes. Physically inaccessible healthcare facilities and failures to ensure effective communication result in disabled people often not receiving equal quality health services as nondisabled people.⁵

This article explores the history of disability and disability rights in the United States and the challenges adult Americans with disability face in accessing healthcare. Throughout, I include real stories from interviews of persons with disabilities that demonstrate their disparate healthcare experiences. Lastly, I discuss ways that clinicians and unions can advocate for greater accessibility and improved care for disabled patients.

How We Talk About Disability Matters

At the outset, it is important to acknowledge that word choices convey views of disability.⁶ Historically, terms such as cripple, handicapped, or imbecile engendered pity and, at least among some people, reflected beliefs that persons’ sins or moral failures caused their disability.⁷ As societies began recognizing biomedical causes in the 19th and 20th centuries, language shifted toward highlighting pathology, with terms like the blind, the mentally retarded, the mentally ill, or the quadriplegic that reduce people to their impairments.⁸ Critics argued that defining people by pathology obscures their humanity. This perspective led to person-first language, positioning personhood before disability (e.g., people with disabilities), which is used throughout the landmark 1990 Americans with Disabilities Act (ADA).

Disability language constantly evolves. Today’s diversity movement, grounded in civil rights and combating disability stigma, has flipped the word order to identity-first language (e.g., disabled persons), which also can connote disability pride.⁹ This perspective views common euphemisms that describe disability, such as special needs, differently abled, or physically challenged, as patronizing or infantilizing. Individuals hold deeply personal language preferences. For instance, Deaf spelled with a capital D reflects the view of many deaf people (i.e., those with an audiological inability to hear) that they are a linguistic or cultural minority—such as belonging to the American Sign Language community—not disabled. Some persons who are autistic, dyslexic, or neurodivergent self-identify as disabled, while others do not.¹⁰

For multiple reasons, many people do not view themselves as disabled, despite reporting functional impairments. In a 2021 national survey of US adults, only 42 percent of respondents who reported impairments said they were disabled.¹¹ For clinicians, the bottom line is to avoid making assumptions about whether people view themselves as disabled and just ask them how they prefer to describe themselves. (In this article, I alternate between person-first and identity-first language.)

Who Are People with Disabilities?

Disabilities are diverse. Some, like Down syndrome or cerebral palsy, as in Adriana’s example above, are congenital; others occur later in life. Some disabilities arrive suddenly, without warning, such as Steffie becoming paraplegic due to an injury; others progress across years, with worsening chronic health conditions. Some are visible; others are not apparent. Disabling impairments affect diverse functions, such as seeing, hearing, speaking, communicating, thinking, learning, emoting, and moving. Disabled people typically perform these various functions, but in different ways than other people. Some people have a single disability, while others have multiple disabilities.

Surveys provide the best data about Americans with disabilities, although surveys have important limitations (e.g., questions must be brief and focused, cultural and other factors may affect responses, and persons may need accommodations to participate). Most federal surveys ask six standard yes-or-no questions about disability, with a “yes” answer to any of them classifying the respondent as disabled.¹² In 2022, 28.7 percent of adults in the United States and its territories reported at least one disability, with disability prevalence rising with increasing age. Women were more likely than men to report any disability. Disability prevalence differs widely by race, although cultural and other personal considerations might affect differences found through surveys. Disabled people are more likely than nondisabled people to face disadvantages in social drivers of health, with lower educational levels, employment rates, and incomes.¹³

Not surprisingly, adults with disabilities are more likely than their nondisabled peers to report being in fair or poor health—37.7 percent compared with 8.8 percent.¹⁴ They are also less likely to be married or partnered. The 2022 survey data do not indicate whether disabled people who report fair or poor health live alone, but lacking family supports could increase their isolation and the challenges of living in their homes and communities. Regardless of disability, few adults want to enter a nursing home if they become unable to care for themselves.¹⁵ It can be easy to focus on these ostensibly negative findings, but it’s important to remember the converse: about two-thirds of people reporting disability do not view themselves as being in fair or poor health. Indeed, a “disability paradox” may exist, as many people with significant disability adapt to their functional limitations and enjoy good quality of life.¹⁶

Who Is Eligible for Support?

Since the Middle Ages, societies have mobilized to assist people who need basic supports to subsist, such as orphaned children, frail elders, and disabled people—so-called “honest beggars” who cannot control their plights.¹⁷ However, among supplicants claiming disability, some people appeared to feign impairments to seek alms or other societal largess. For centuries, therefore, societies have endeavored to distinguish “meritorious” disabled people from imposters.

A breakthrough occurred in the 19th century with the invention of new diagnostic instruments—the stethoscope, microscope, ophthalmoscope, spirometer, x-ray, and others—that exuded scientific objectivity.¹⁸ These technologies could detect disease without relying on what people reported, thereby offering opportunities to determine “legitimate” disability claims. These diagnostic tools also drove discovery of biological causes of functional impairments. By the end of the 1800s, the medical model of disability prevailed, positing that disability is a problem of individual persons, resulting from trauma or other health conditions and requiring treatment by medical professionals.¹⁹ Treatments aim to cure, but if treatments fail, people are expected to adjust to their losses.

By the mid-20th century, perspectives on disability began shifting dramatically,²⁰ motivated initially by millions of injured veterans returning from World War II. Despite significant permanent impairments, these veterans wanted to start families, return to civilian work, and participate fully in their communities. (Ironically, these vets displaced women and disabled workers who had effectively staffed industry on the home front during their absence.) By the late 1960s, the social model of disability emerged, asserting that disability was not an attribute of individuals but instead a result of environmental factors, such as negative societal attitudes, physical barriers, and exclusionary public policies. In failing to accommodate differences and thus isolating people, these environmental factors prevented individuals’ full integration in community life. The social model and its newer incarnations, such as the diversity movement,²¹ view disability as a human rights issue.

In the United States, no single consensus of disability exists. To determine who merits disability-related public federal benefits, from Social Security to civil rights protections, different definitions apply, and the definitions vary in important ways. For example, the Social Security Act’s definition of disability in adults focuses on a binary determination—whether or not someone can be gainfully employed—whereas the US Department of Veterans Affairs quantifies disability along a continuum, assigning benefits based on a disability rating percentage. Most definitions rely on the medical model of disability and demand proof from medical professionals to ensure each applicant deserves support.

Disability Rights Laws

The first major federal disability civil rights law was Section 504 of the 1973 Rehabilitation Act. This law primarily aimed to update vocational rehabilitation policies in effect for 50 years, but somehow—stories vary about how this happened²²—Section 504 made it in. Section 504 was the first federal statute to extend civil rights protections to people with disability:

No otherwise qualified individual with a disability in the United States … shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency.²³

However, this dramatic expansion of disability rights confronted entrenched resistance from the Nixon, Ford, and Carter administrations, all of which refused to enact regulations to implement Section 504. Frustrated by years of stonewalling, on April 5, 1977, disability rights activists entered the federal Office of Health, Education, and Welfare in San Francisco, riveting national attention as they occupied the space and launched what became a multiweek sit-in. Trying (unsuccessfully) to dislodge the protestors, federal officials cut off hot water and telephone service; at windows, deaf protestors used sign language to communicate with the outside world; Black Panther Party members delivered daily hot meals. After nearly a month, the protestors emerged when the Carter administration agreed to sign Section 504 regulations.²⁴

Core to Section 504 is that people must prove they are “qualified” as disabled before they can bring complaints about disability discrimination. This requirement differs from other civil rights laws (e.g., under the 1964 Civil Rights Act, individuals must not first establish their race, sex, religion, or other covered attribute before seeking protection). The ADA, enacted in 1990, followed Section 504’s lead in requiring people to first prove they are disabled. Many early ADA lawsuits that rose to the US Supreme Court focused on this issue, and major court rulings narrowed who is disabled under the ADA. To reverse this trend and ensure that courts construe disability broadly, Congress passed the Americans with Disabilities Act Amendments Act (ADAAA) in 2008, which lists multiple conditions as examples of physical or mental impairments that can substantially limit major life activity and validate disability. Episodic impairments or impairments that are in remission qualify as disability if, when active, they substantially limit a major life activity. When determining whether a person has a disability, the ADAAA requires courts to disregard amelioration of functional abilities based on an assistive technology or treatments—with the exception of ordinary eyeglasses or contact lenses. (To learn more about how various agencies and laws define disability and other related terms, see the table here.)

Disability rights laws require not only that public entities and businesses stop discriminatory actions but also that they take proactive steps to provide equal opportunity to persons with disabilities, within the bounds of what is considered “reasonable accommodations” or “readily achievable.” Framers of these laws adopted this reasonableness standard because of concerns, largely from business owners, that accommodating disabled people would be expensive and cause undue hardship. The laws recognize that determining reasonable accommodations must be highly individualized, as each disabled person has specific needs and preferences for what works best for them.

The fact is that accommodations often cost nothing or have modest costs. According to employer surveys conducted by the federally funded Job Accommodation Network, 56 percent of employers reported that accommodations needed by their disabled employees cost nothing; 37 percent reported a one-time expenditure with median costs of $300; just 7 percent reported ongoing costs with median annual expenses of $1,925.²⁵ Some potentially no-cost employment accommodations include adjusting work schedules, welcoming service animals,²⁶ and providing remote work options. Sally Ann’s story offers a good example.

In the late 1980s, when Sally Ann was in her 20s, her multiple sclerosis worsened. The ADA had not yet been passed, and she worked in an older building that had no accommodations such as stair handrails or designated parking spots; in addition, she had to travel down a flight of stairs to use a women’s restroom because the restroom on her floor was designated for men. Navigating her office work became much more challenging, so she requested accommodations—including a designated parking spot, handrails for the stairs, an air conditioning unit for her office, and reassignment of restrooms so that the women’s restroom was on the floor she worked on. Sally Ann’s boss agreed to make the changes, which cost little, and Sally Ann was able to continue working.²⁷

What Healthcare Disparities Do People with Disability Face?

Disability rights laws and regulations require that people with disability receive equal access to healthcare, which might necessitate accommodations to meet access needs.²⁸ Section 504 covers providers receiving federal funds, such as Medicare and Medicaid; ADA Title II applies to providers supported by state and local governments; ADA Title III covers private practices or organizations (e.g., private hospitals) that serve the public; and Section 1557 of the Affordable Care Act (ACA) prohibits any health programs, insurers, or activities that receive federal funding from refusing to treat or otherwise discriminating against people on the basis of race, color, national origin, sex, age, or disability. Despite these mandates, people with disabilities often receive substandard care and experience worse health outcomes than do nondisabled people.²⁹

Since 1980, the US Office of Disease Prevention and Health Promotion has published decennial Healthy People reports delineating public health priorities for the decade ahead. The 2000 report, Healthy People 2010, was the first to designate disabled people as a population experiencing disparities. The report attributed disability disparities at least in part to common misconceptions about disabled people that result in an “underemphasis on health promotion and disease prevention activities.”³⁰

Relatively little nationwide data are routinely collected about healthcare services received by people with disabilities, apart from limited survey information. Rates of routine checkups in the past year do not vary significantly by disability status, although disabled adults are much less likely to have seen a dentist. Women with disabilities are less likely than other women to receive Pap tests and mammograms, although differences vary by disability type. Colorectal cancer screening rates are comparable by disability status.³¹ Importantly, disparities in routine service use are not primarily driven by insurance status (i.e., ability to pay for the service). Because of safety net programs—Medicare coverage for persons under age 65 with Social Security Disability Insurance and Medicaid for disabled adults with low incomes—people with disabilities ages 21–64 are slightly more likely to have health insurance than nondisabled individuals (90.9 percent compared to 88.9 percent).³²

Over the last three decades, researchers have documented disability disparities in specific healthcare services, especially in sexual and reproductive health services, cancer care, and care during COVID-19.³³ Numerous studies have interviewed disabled people, as well as physicians and other healthcare professionals, providing in-depth insights into their perspectives on disability disparities. Many factors contribute to these inequities; below, I highlight four important concerns, drawing especially from a 2019–20 nationwide survey of physicians about providing outpatient care to adults with disability.

Inadequate Physician Knowledge

Caroline, who became quadriplegic from a spinal cord injury, experienced pain following a hemorrhoidectomy. When she asked for Tylenol, her nurse asked, “Why? You can’t feel.” Caroline explained, “Just because I’m a C-5 quad doesn’t mean I still can’t feel pain. Some people do; some people don’t. You have to ask.” Although skeptical, her physician did eventually prescribe medication.³⁴

As she planned for labor and delivery, Sylvia explored how being a person with dwarfism might affect her care. She brought x-rays of her spine when she met with her anesthesiologist to help plan the epidural approach. The clinician was reluctant to look at the films or listen to her concerns about potential difficulties with anesthesia. Sylvia asked if he’d ever administered an epidural to a little person before, and he replied, “Well no, but it can’t be that different.” Complications during anesthesia administration compromised Sylvia’s labor and delivery, which caused Sylvia distress and made her obstetrician’s job more difficult.³⁵

Diane is a physician and medical educator who uses a wheelchair. She is concerned that disability training is not required in or a core component of medical school curriculum. To her, this omission “reinforces the idea that these aren’t really your patients or they’re not important enough for you to learn about.”³⁶

In the 2019–20 nationwide survey, only 41 percent of physicians in outpatient practices reported feeling very confident that they could provide equal quality of care to disabled patients as to nondisabled patients, and just 56 percent said they strongly welcome people with disability into their practices.³⁷ Patients with disability generally sense when their physicians are uncertain how to care for them—and when they are unwelcome.³⁸ Physicians’ knowledge gaps can be obvious, as Caroline and Steffie learned when they experienced pain. (People with injuries high in the spinal cord can risk life-threatening complications from certain types of pain.) Some people with disabilities, especially those with less common conditions, educate themselves to ensure they get the right care. But as in Sylvia’s case, some healthcare professionals dismiss their concerns.

US medical schools do not have a common curriculum, although all students must pass standard national exams. It is unclear how many of the country’s approximately 155 allopathic medical schools and roughly 40 osteopathic schools currently include disability in their curricula. Anecdotal evidence suggests that few medical schools systematically teach about it.³⁹ Depending on their chosen specialty, physicians may receive training on disability during their residencies. However, disability considerations are not included in standard medical licensure exams or, with some exceptions, in specialty board certification exams.

In the 2019–20 survey, 35 percent of physicians indicated that lack of formal education or training was a large or moderate barrier to caring for patients with disabilities. In addition, 36 percent reported knowing little or nothing about their legal responsibilities under the ADA, despite nearly 30 years passing since its enactment. Most worrisome, 71 percent did not know the correct approach for determining reasonable accommodations (i.e., collaborative discussions between disabled patients and their clinicians), and only 80 percent understood that providers or practices (not patients) pay accommodation costs. About 68 percent of survey respondents believed they were at risk for an ADA lawsuit.⁴⁰

Physical Barriers

Victor has a neurologic condition and uses a wheelchair. Upon arriving for his appointment with a neurologist, he described the “wheelchair accessible” entry as anything but: the arrow indicating accessible entry led him down an alley behind the building to the back door, where there was only a small space barely large enough for him to open the door and turn his chair. Just inside the door, Victor had to maneuver up a four-inch step. “That’s their idea of accessibility!”⁴¹

Ray, who is paraplegic from a spinal cord injury, visited a doctor because of severe groin pain and a growth about the size of a bean in the area. There was no height-adjustable exam table, so the doctor examined Ray while seated in his wheelchair. After sticking his finger into Ray’s groin, the physician diagnosed him with an infection and prescribed a week of antibiotics. “After the seven days, that bean turned into a little tennis ball,” Ray said; three weeks later, it was “the size of a grapefruit.” The “infection” was finally correctly diagnosed as Hodgkin’s lymphoma.⁴²

Accessibility of physical environments involves not only physical features but also lighting, noise, signage, and other aspects of space that affect people across a range of disabilities. The US Access Board, an independent federal agency mandated by Section 502 of the 1973 Rehabilitation Act, coordinates accessibility regulations across federal agencies. Several laws direct its activities, including the Rehabilitation Act, ADA, 1968 Architectural Barriers Act, and Telecommunications Act of 1996. In 1991, the US Access Board issued its first regulations to implement ADA accessibility standards. Those regulations focus on fixed structures, such as parking lots, sidewalks, building entrances, and aspects of interior spaces, like corridor and door widths, elevators, and restroom features (e.g., toilet heights, grab bars, and positioning of sinks). Despite their patient care mission, few hospitals and health centers met these ADA guidelines. Small practices and clinics, especially those in older structures and rural areas, were often inaccessible.

Not surprisingly, early efforts to improve physical access at healthcare facilities started with the 1991 structural accessibility requirements—with some success. For example, from 2006 to 2010, California used a 55-item tool based on ADA regulations to examine accessibility at 2,389 primary care sites contracting with several managed care organizations serving Medicaid enrollees. The state found that van-accessible parking spaces were inadequate, but otherwise parking, exterior access, building access, and interior public spaces generally met access standards—except for physical barriers that remained in bathrooms and examination rooms. The 55-item tool also included accessible medical diagnostic equipment (MDE), although MDE was outside ADA regulations. Only 3.6 percent of primary care sites had an accessible weight scale, and only 8.4 percent had a height-adjustable examination table.⁴³ Having accessible MDE is essential for persons with mobility disabilities to receive safe, respectful, and equitable healthcare. Many studies have documented the hazards, indignities, and compromised quality of care of inaccessible MDE, such as wheelchair users like Ray being examined in their chairs rather than on examination tables or patients with mobility difficulties being weighed at a granary, a cattle processing location, or a supermarket because practices lacked accessible scales.⁴⁴ In addition to improving patient care, accessible equipment also reduces risks of potentially career-ending occupational injuries for practice staff.⁴⁵

The original ADA accessibility regulations viewed MDE, such as weight scales, examination tables, diagnostic imaging equipment, mammography machines, and gurneys, as furniture (i.e., not fixed structures). In the mid-2000s, congressional attempts to develop access standards for MDE failed. However, Section 4203 of the 2010 Affordable Care Act finally required the US Access Board, in consultation with the Food and Drug Administration, to issue accessibility standards for MDE for adults.⁴⁶ The Obama administration finalized these rules in January 2017;⁴⁷ in December 2017, the first Trump administration announced it would take these rules no further.⁴⁸

Although standards now exist for accessible MDE, healthcare providers have been slow to acquire this equipment. The 2019–20 nationwide survey of physicians in outpatient practices found that only 10 percent always used accessible weight scales for patients with significant mobility limitations.⁴⁹ Although wheelchair users systematically underestimate their weight, 32.4 percent of physicians “usually or always” and 40 percent “sometimes” simply asked these patients their weights. Only 19 percent of physicians “always” and 19.9 percent “usually” used height-adjustable exam tables for patients with significant mobility limitations.⁵⁰

Recognizing the “modest voluntary adoption of accessible MDE by healthcare providers,” on May 9, 2024, the US Department of Health and Human Services (HHS) updated Section 504 regulations.⁵¹ All weight scales and exam tables purchased, leased, or newly acquired more than 60 days after publication of the final rule must comply with the 2017 accessibility standards; by July 8, 2026, all settings must acquire at least one accessible weight scale and exam table. (On August 9, 2024, the US Department of Justice issued similar rules mandating accessible MDE at healthcare facilities covered under ADA Title II.⁵²) Unlike other disability rights laws, this provision has enforcement mechanisms,⁵³ but whether the second Trump administration will enforce compliance is unclear.

Communication Barriers

John, who is deaf, was hospitalized with Guillain-Barré syndrome. As he lay in bed, doctors circled him, touching him and talking to each other about his case, but they did not include him. “I didn’t know what anybody was saying.… They come in, treat me like some object in a zoo, and leave,” he said.⁵⁴

Mackenzie is also deaf, and when her newborn son was admitted to the neonatal intensive care unit because of nutrition concerns, his pediatrician became angry with Mackenzie for not following the prescribed formula measurements. The pediatrician, the NICU, and the public health program Mackenzie was enrolled in all refused to hire a sign language interpreter, with the public health program citing the cost. Instead, they relied on Mackenzie’s husband to facilitate communication, “but it’s still not full information.”⁵⁵

Without effective communication between patients and clinicians, patients with communication-related disabilities may not fully understand their health conditions and treatments, raising risks for poor outcomes and making it more difficult for patients to trust or feel respected by clinicians. Section 504 and the ADA require providers to ensure effective communication after first discussing with patients their preferred communication accommodation, even if it is low tech—such as by providing written communication to patients. Many approaches are available to accommodate diverse communication needs, including voice amplifiers, in-person and remote (by video) sign language interpreters, telecommunication technologies, augmentative and alternative communication devices, and myriad other communication tools.

Yet, the 2019–20 nationwide outpatient physician survey found that few physicians provided even low-tech accommodations to many patients with communication-related disabilities. For instance, 37 percent of physicians “never” and 19 percent “rarely” provided printed materials in a large font; 24 percent “never” and 26 percent “rarely” described exam rooms verbally to their patients with limited vision.⁵⁶ People who are blind or have low vision advocate for these basic steps.⁵⁷ Fifty percent of physicians also reported never using an in-person sign language interpreter hired by the practice, and 63 percent never used remote interpreting for their deaf patients.⁵⁸ Instead, 31 percent “always” and 30 percent “usually” spoke louder and more slowly to these patients. Physicians who wrote unstructured comments on the survey complained about costs of sign language interpreters, reporting these expenses often exceeded their visit fee and are therefore unfair.⁵⁹ The ADA requires practices to cover accommodation costs.

On May 6, 2024, HHS issued final regulations under ACA Section 1557. Section 92.202 of these rules requires healthcare clinicians to “provide appropriate auxiliary aids and services where necessary to afford individuals with disabilities an equal opportunity to participate in, and enjoy the benefits of, the health program.… Such auxiliary aids and services must be provided free of charge, in accessible formats, in a timely manner, and in such a way to protect the privacy and the independence of the individual with a disability.”⁶⁰ Whether these rules will be enforced under the Trump administration is unclear.

Diagnostic Overshadowing and Erroneous Assumptions

Clinicians frequently make inaccurate assumptions about disabled people and their health needs that lead to worse outcomes. One common error is “diagnostic overshadowing”—mistakenly attributing all new symptoms affecting disabled patients to their underlying disabling condition.⁶¹ Diagnostic overshadowing can delay detection of potentially life-threatening health problems. For example, across two years and without testing, multiple doctors attributed one woman’s substantial weight loss and abdominal pain to gastroparesis (paralysis of stomach muscles) from her spinal cord injury; she weighed less than 100 pounds when they finally diagnosed her Hodgkin’s lymphoma.⁶²

Perhaps the most insidious erroneous assumption about people with disabilities is biased and uninformed judgments about their quality of life. As noted above, many people with significant disability adapt to their functional limitations and enjoy good quality lives.⁶³ Nevertheless, in the 2019–20 survey, 82 percent of physicians reported their perception that people with significant disability have worse quality of life than nondisabled people.⁶⁴ The COVID-19 pandemic clarified the risks to disabled people of these stigmatized attitudes.

In January 2020, when COVID-19 took hold in the United States, American hospitals and clinicians were not prepared. They lacked not only basics, such as personal protective equipment, but also adequate capacity of lifesaving interventions, such as intensive care beds and ventilators. In times of resource scarcity, states and hospitals dust off “crisis standards of care” (CSCs)—theoretically objective guidance, developed with community input outside crisis periods, to direct allocation of scarce resources. However, some CSCs explicitly endorsed withholding scarce resources from disabled persons, including people with “severe or profound mental retardation” and individuals with neuromuscular conditions “requiring assistance with activities of daily living.” Disability advocacy groups filed complaints against seven states with the HHS Office for Civil Rights alleging disability discrimination.⁶⁵ On March 28, 2020, the Office for Civil Rights issued a bulletin stating that “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.… Our civil rights laws protect the equal dignity of every human life.”⁶⁶

How Can Clinicians Better Support Patients with Disability?

Claire had polio and uses bilateral forearm crutches. After surgery for early-stage breast cancer, she was quickly sent home, with no plans for assistance with mobility. “I literally walk on my arms,” she said. “I have to take almost 100 percent of the weight off my legs. They never thought, ‘How is she going to do that with the 6 to 7 inch scar under her arm?’”⁶⁷

Crystal has an intellectual disability. When she sought prenatal care, she needed accommodations such as written communication. The midwife caring for her respected her preferences. She also took time to listen to Crystal without distractions—even turning off her office computers. “It made me feel more at ease to know that she was actually sitting there, listening to me,” Crystal said.⁶⁸

A starting point for better supporting disabled patients is addressing the barriers to care identified in this article and ensuring that healthcare facilities comply with the accessibility regulations and accommodations outlined in the ADA and ACA. Here, clinicians and their unions can be powerful advocates. For example, they can bargain for and serve on committees tasked with helping staff better understand accessibility barriers to health, assessing facilities’ abilities to provide accessible and disability-competent care, and developing recommendations for improvement.^†

These assessments can help uncover challenges patients may experience with structural access—even in facilities purporting to have accessibility accommodations, as in Victor’s experience. They can also uncover patients’ challenges with information access, such as lack of resources (i.e., sign language interpretation services, augmentative communication devices, or other communication aids) to accommodate effective health communications. And they can help identify areas for improved communication between clinicians, which facilitates greater access for disabled patients across multiple points of care.⁶⁹ For example, Claire’s experience highlights the need for care coordination, including ensuring discharge planning and appropriate home-based supports.

Assessing disability care competence may uncover healthcare professionals’ assumptions and biases about people with disability that could put patients at risk for negative health outcomes—as seen in Caroline’s and Sylvia’s experiences. Beyond identifying biases, clinicians and union members can work to actively mitigate them by advocating for disability competent care training for health professionals. This is a necessary step toward making clinicians and healthcare staff not only more knowledgeable and supportive of disabled patients’ care needs but also more prepared to appropriately meet them.⁷⁰

Clinicians and their unions can also advocate for healthcare administrators to include more disability perspectives in the workforce, including by hiring more physicians and other healthcare professionals who have disabilities, and by making sure their workplaces meet the needs of disabled staff as well as patients. Such moves might influence disability competence and patient outcomes related to patient-provider concordance and fostering patient-clinician trust.^‡ One physician described it this way:

The single most important insight I have gained from being a disabled doctor is that I really have no idea what life is like for my patients…. The disability I know best is deafness. The profession I know best is medicine. So I accept that I’ve no idea how life is for, say, an accountant with cerebral palsy. But I do at least know what not to do if I should meet such a person. I won’t automatically assume that they can’t do certain things—nor will I blithely reassure them that they can. I’ll … try to build up a picture of a more complex reality. Above all, I will let them tell me how it is.⁷¹

Clinicians inviting patients to tell them “how it is” is a crucial point that should be reinforced in the electronic health records. One place some healthcare organizations are adding disability information is in the demographic information section (i.e., where they gather information about race, ethnicity, LGBTQIA+ status, and gender identity). Some hospitals collect information on functional impairments, and they ask a separate question about whether people identify as disabled. Many healthcare providers are also specifying a location in records to note accommodation needs, although that must be continually updated (as indeed all information on disability should).

In terms of policy, health professionals and their unions can advocate for state and federal enforcement of the existing laws described here. In addition, the National Council on Disability’s Framework to End Health Disparities for People with Disabilities identifies core components that clinicians and communities can join forces to push for at the federal level, including designating people with disabilities as a Special Medically Underserved Population, requiring comprehensive disability clinical care curricula and competency training, and improving data collection related to healthcare for people with disabilities.⁷² In addition to individual and union activism, healthcare workers can join with professional associations and other advocacy groups to increase the pressure on lawmakers to make improving care for patients with disabilities a legislative priority. This is especially important given the substantial Medicaid cuts in the so-called Big Beautiful Bill, which President Trump signed into law on July 4, giving tax cuts to the ultra-wealthy. Although the impact of the Medicaid cuts will vary across states, disabled people in rural regions, where hospitals may close because of these cuts, could face significant barriers to accessing healthcare (e.g., because of longer travel distances).

The number of people in the United States who have some disability is expected to increase in the coming years. Our healthcare system must be better equipped to provide these individuals with safe, accessible, and patient-centered care—and everyone has a role to play. As disability affects all of us in ways large and small, collaborating on healthcare solutions that provide dignity and equality for people with disabilities benefits all of us.

Lisa I. Iezzoni, MD, is a professor of medicine at Harvard Medical School, based at the Health Policy Research Center, Mongan Institute, at Massachusetts General Hospital, and a member of the National Academy of Medicine in the National Academies of Sciences, Engineering, and Medicine. In more than three decades of health services research, she has conducted numerous studies examining healthcare disparities for persons with disability.

*Pseudonyms have been used throughout these patient stories. (return to article)

^†One resource such committees may want to draw on is the 
Disability Equity Collaborative (disabilityequitycollaborative.org), which offers a comprehensive array of healthcare trainings, toolkits, and guidelines.
 (return to article)

^‡To learn more about the importance of diverse perspectives and patient-clinician concordance in healthcare, read “From ‘Do No Harm’ to ‘Do More Good’” in the Fall 2024 issue of AFT Health Care: aft.org/hc/fall2024/taylor. (return to article)

Endnotes

1. L. Iezzoni and B. O’Day, More Than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities(New York: Oxford University Press, 2006), 142–43.

2. L. Iezzoni et al., “Physical Accessibility of Routine Prenatal Care for Women with Mobility Disability,” Journal of Women’s Health (Larchmont) 24, no. 12 (December 1, 2015): 1006–12.

3. L. Iezzoni et al., “Communicating About Health Care: Observations from Persons Who Are Deaf or Hard of Hearing,” Annals of Internal Medicine 140, no. 5 (March 2004): 356–62.

4. N. Young and K. Crankshaw, “U.S. Childhood Disability Rate Up in 2019 from 2008: Disability Rates Highest Among American Indian and Alaska Native Children and Children Living in Poverty,” US Census Bureau, March 25, 2021, census.gov/library/stories/2021/03/united-states-childhood-disability-rate-up-in-2019-from-2008.html.

5. M. Mitra et al., “Advancing Health Equity and Reducing Health Disparities for People with Disabilities in the United States,” Health Affairs (Millwood) 41, no. 10 (2022): 1379–86.

6. E. Andrews et al., “#SaytheWord: A Disability Culture Commentary on the Erasure of ‘Disability,’” Rehabilitation Psychology 64, no. 2 (May 2019): 111–18.

7. E. Andrews, R. Powell, and K. Ayers, “The Evolution of Disability Language: Choosing Terms to Describe Disability,” Disability and Health Journal 15, no. 3 (July 2022): 101328.

8. Andrews, Powell, and Ayers, “The Evolution of Disability Language.”

9. Andrews, Powell, and Ayers, “The Evolution of Disability Language.”

10. Andrews et al., “#SaytheWord.”

11. M. Salinger et al., “Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness,” JAMA Health Forum 4, no. 9 (2023): e233180.

12. Centers for Disease Control and Prevention, “Disability and Health Data System (DHDS): Data Guides: Status and Types: Disability Status,” April 3, 2025, cdc.gov/dhds/data-guides/status-and-types.html#cdc_data_surveillance_section_1-disability-status.

13. Centers for Disease Control and Prevention, “Disability and Health Data System (DHDS): United States, DC & Territories: Category: Disability Estimates,” National Center on Birth Defects and Developmental Disabilities, go.aft.org/tvh.

14. Centers for Disease Control and Prevention, “Disability and Health Data System (DHDS): United States, DC & Territories.”

15. Henry J. Kaiser Family Foundation, Update on the Public’s Views of Nursing Homes and Long-Term Care Services (Menlo Park, CA: December 2007), kff.org/wp-content/uploads/2013/01/7719.pdf; John A. Hartford Foundation, “Age-Friendly Insights: Poll Reveals How Older Adults Feel About Nursing Homes,” December 7, 2021, johnahartford.org/resources/view/age-friendly-insights-how-do-older-adults-feel-about-nursing-homes; and M. Brenan, “Americans Give Nursing Homes D+ Grade for Quality of Care,” Gallup Blog, September 12, 2023, news.gallup.com/opinion/gallup/510512/americans-give-nursing-homes-grade-quality-care.aspx.

16. G. Albrecht and P. Devlieger, “The Disability Paradox: High Quality of Life Against All Odds,” Social Science & Medicine 48, no. 8 (April 1999): 977–88.

17. D. Stone, The Disabled State (Philadelphia: Temple University Press, 1984).

18. Stone, The Disabled State.

19. World Health Organization, “International Classification of Functioning, Disability and Health (ICF),” who.int/standards/classifications/international-classification-of-functioning-disability-and-health.

20. J. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Book, 1994); and K. Nielsen, A Disability History of the United States (Boston: Beacon Free Press, 2012).

21. Andrews, Powell, and Ayers, “The Evolution of Disability Language.”

22. Shapiro, No Pity.

23. Office of the Assistant Secretary for Administration & Management, “Section 504, Rehabilitation Act of 1973,” US Department of Labor, dol.gov/agencies/oasam/centers-offices/civil-rights-center/statutes/section-504-rehabilitation-act-of-1973.

24. J. Heumann and K. Joiner, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist (Boston: Beacon Press, 2020); also, this 2018, seven-minute sketch from Comedy Central’s Drunk History series captures the chaotic but intense commitment of the Section 504 protests: Comedy Central, “Judith Heumann’s Fight for Disability Rights (feat. Ali Stroker) – Drunk History,” YouTube, March 25, 2020, youtube.com/watch?v=y505KwHp4O4.

25. Job Accommodation Network, “Costs and Benefits of Accommodation: A to Z: Costs and Benefits of Accommodation,” April 5, 2024, askjan.org/topics/costs.cfm.

26. L. Iezzoni and K. Higgins, “Service Animals in Health Care Settings,” JAMA 331, no. 21 (June 4, 2024): 1854–55.

27. L. Iezzoni, When Walking Fails: Mobility Problems of Adults with Chronic Conditions (Berkeley, CA: University of California Press, 2003), 115.

28. N. Agaronnik et al., “Knowledge of Practicing Physicians About Their Legal Obligations When Caring for Patients with Disability,” Health Affairs (Millwood) 38, no. 4 (April 2019): 545–53.

29. L. Iezzoni et al., “Have Almost Fifty Years of Disability Civil Rights Laws Achieved Equitable Care?,” Health Affairs (Millwood) 41, no. 10 (October 2022): 1371–78.

30. US Department of Health and Human Services, Healthy People 2010: Understanding and Improving Health, 2nd ed. (Washington, DC: US Government Printing Office, November 2000), wayback.archive-it.org/5774/20220417004258/https://www.healthypeople.gov/2010/Document/pdf/uih/2010uih.pdf.

31. Centers for Disease Control and Prevention, “Disability and Health Data System (DHDS): United States, DC & Territories.”

32. W. Erickson, C. Lee, and S. von Schrader, 2022 Disability Status Report: United States (Ithaca, NY: Cornell University, Yang-Tan Institute on Employment and Disability (YTI), 2024), production-disabilitystatistics-org.s3.amazonaws.com/reports/2022-PDF/2022-StatusReport_US.pdf.

33. Mitra et al., “Advancing Health Equity”; L. Iezzoni, “Cancer Detection, Diagnosis, and Treatment for Adults with Disabilities,” Lancet Oncology 23, no. 4 (2022): E164–73; M. Mitra et al., “Maternal Characteristics, Pregnancy Complications, and Adverse Birth Outcomes Among Women with Disabilities,” Medical Care 53, no. 12 (2015): 1027–32; and I. Akobirshoev et al., “Delayed Medical Care and Unmet Care Needs Due to the COVID-19 Pandemic Among Adults with Disabilities in the US,” Health Affairs (Millwood) 41, no. 10 (October 2022): 1505–12.

34. Iezzoni and O’Day, More Than Ramps, 143.

35. L. Long-Bellil et al., “Experiences and Unmet Needs of Women with Physical Disabilities for Pain Relief During Labor and Delivery,” Disability and Health Journal 10, no. 3 (2017): 440–44.

36. C. Haywood et al., “‘The Forgotten Minority’: Perpetuation of Ableism in Medical Education,” Journal of General Internal Medicine 40, no. 6 (May 2025): 1378–86.

37. L. Iezzoni et al., “Physicians’ Perceptions of People with Disability and Their Health Care,” Health Affairs (Millwood) 40, no. 2 (February 2021): 297–306.

38. Iezzoni and O’Day, More Than Ramps.

39. Haywood et al., “‘The Forgotten Minority.’”

40. L. Iezzoni et al., “US Physicians’ Knowledge About the Americans with Disabilities Act and Accommodation of Patients with Disability,” Health Affairs (Millwood) 41, no. 1 (January 2022): 96–104.

41. N. Agaronnik, A. El-Jawahri, and L. Iezzoni, “Perspectives of Patients with Pre-Existing Mobility Disability on the Process of Diagnosing Their Cancer,” Journal of General Internal Medicine 36, no. 5 (May 2021): 1250–57.

42. Agaronnik, El-Jawahri, and Iezzoni, “Perspectives of Patients.”

43. N. Mudrick et al., “Physical Accessibility in Primary Health Care Settings: Results from California On-Site Reviews,” Disability and Health Journal 5, no. 3 (2012): 159–67.

44. N. Agaronnik et al., “Accommodating Patients with Obesity and Mobility Difficulties: Observations from Physicians,” Disability and Health Journal 14, no. 1 (2021): 100951.

45. G. Fragala, “Reducing Occupational Risk to Ambulatory Caregivers,” Workplace Health & Safety 64, no. 9 (September 2016): 414–19.

46. L. Iezzoni and E. Pendo, “Accessibility of Medical Diagnostic Equipment—Implications for People with Disability,” New England Journal of Medicine 378, no. 15 (April 12, 2018): 1371–73.

47. Architectural and Transportation Barriers Compliance Board, “Standards for Accessible Medical Diagnostic Equipment,” 36 CFR Part 1195, RIN 3014-AA40, Federal Register 82, no. 5 (January 9, 2017): 2810–48, govinfo.gov/content/pkg/FR-2017-01-09/pdf/2016-31186.pdf.

48. GovInfo, “82 FR 60932 – Nondiscrimination on the Basis of Disability; Notice of Withdrawal of Four Previously Announced Rulemaking Actions,” US Government Publishing Office, govinfo.gov/app/details/FR-2017-12-26/2017-27510.

49. L. Iezzoni et al., “Use of Accessible Weight Scales and Examination Tables/Chairs for Patients with Significant Mobility Limitations by Physicians Nationwide,” Joint Commission Journal on Quality and Patient Safety 47, no. 10 (October 2021): 615–26.

50. Iezzoni et al., “Use of Accessible Weight Scales.”

51. US Department of Health and Human Services, “Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance,” Federal Register 89, no. 91 (2024): 40066–195.

52. US Department of Justice, Civil Rights Division, “Nondiscrimination on the Basis of Disability; Accessibility of Medical Diagnostic Equipment of State and Local Government Entities,” Federal Register 89, no. 154 (2024): 65180–200.

53. L. Iezzoni and M. Stein, “New Rules Requiring Accessible Medical Diagnostic Equipment—Updates to Section 504 Disability Civil Rights Regulations,” JAMA 332, no. 8 (August 27, 2024): 617–18.

54. L. Iezzoni et al., “Communicating About Health Care: Observations from Persons Who Are Deaf or Hard of Hearing,” Annals of Internal Medicine 140, no. 5 (March 2, 2004): 356–62.

55. G. Saeed et al., “Barriers to and Facilitators of Effective Communication in Perinatal Care: A Qualitative Study of the Experiences of Birthing People with Sensory, Intellectual, and/or Developmental Disabilities,” BMC Pregnancy and Childbirth 22, no. 1 (April 26, 2022): 364.

56. L. Iezzoni et al., “Incidence of Accommodations for Patients with Significant Vision Limitations in Physicians’ Offices in the US,” JAMA Ophthalmology 140, no. 1 (2022): 79–84.

57. M. Cupples et al., “Improving Healthcare Access for People with Visual Impairment and Blindness,” BMJ 344 (January 30, 2012): e542.

58. L. Iezzoni et al., “Accommodating Hearing Loss in Outpatient Physician Offices in the U.S.,” Disability and Health Journal 16, no. 1 (2023): 101397.

59. L. Iezzoni, “What Some Physicians Say About Caring for Patients with Disability: Responses to Open-Ended Question to Nationwide Physician Survey,” Disability and Health Journal 17, no. 3 (July 2024): 101635.

60. US Department of Health and Human Services, Centers for Medicare and Medicaid Services, “Nondiscrimination in Health Programs and Activities,” Federal Register 89, no. 88 (2024): 37587.

61. L. Iezzoni, “Dangers of Diagnostic Overshadowing,” New England Journal of Medicine 380, no. 22 (May 30, 2019): 2092–93.

62. Agaronnik, El-Jawahri, and Iezzoni, “Perspectives of Patients.”

63. Albrecht and Devlieger, “The Disability Paradox.”

64. Iezzoni et al., “Physicians’ Perceptions.”

65. M. Mello, G. Persad, and D. White, “Respecting Disability Rights—Toward Improved Crisis Standards of Care,” New England Journal of Medicine 383, no. 5 (July 30, 2020): e26.

66. HHS Office for Civil Rights, “Bulletin: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19),” US Department of Health and Human Services, March 28, 2020, aahd.us/wp-content/uploads/2020/04/ocr-bulletin-3-28-20.pdf.

67. L. Iezzoni, E. Park, and K. Kilbridge, “Implications of Mobility Impairment on the Diagnosis and Treatment of Breast Cancer,” Journal of Women’s Health 20, no. 1 (2011): 45–52.

68. Saeed et al., “Barriers to and Facilitators of Effective Communication.”

69. Saeed et al., “Barriers to and Facilitators of Effective Communication.”

70. C. Bowen et al., “A Call to Action: Preparing a Disability-Competent Health Care Workforce,” Disability and Health Journal 13, no. 4 (October 2020): 100941.

71. L. Iezzoni, “Why Increasing Numbers of Physicians with Disability Could Improve Care for Patients with Disability,” AMA Journal of Ethics 18, no. 10 (2016): 1041–49.

72. National Council on Disability, Framework to End Health Disparities of People with Disabilities (Washington, DC: April 7, 2025), ncd.gov/report/framework-to-end-health-disparities-of-people-with-disabilities. See also the Core Competencies on Disability for Health Care Education, a rigorous curriculum for training in disability-competent care across healthcare disciplines. The development effort was led by researchers from The Ohio State University, who put together a multi-disciplinary team that included persons with disabilities and caregivers. Alliance for Disability in Health Care Education, Core Competencies on Disability for Health Care Education (Peapack, NJ: Alliance for Disability in Health Care Education, 2019), nisonger.osu.edu/wp-content/uploads/2019/08/post-consensus-Core-Competencies-on-Disability_8.5.19.pdf.

[Illustrations by Mia Nolting]