Can you imagine going to your doctor’s office and not being able to get on the examination table because it is too high? Or not being weighed throughout your entire pregnancy because your primary care physician does not have a wheelchair-accessible scale? Unfortunately, these examples are the stark reality for people with disabilities. Notwithstanding advancements in disability rights, people with disabilities still do not enjoy full and equal access to health care—and recent moves by the Trump administration may make that situation even worse.
The Americans with Disabilities Act (ADA) was passed in 1990 with the goal of ensuring equal opportunity, full participation in the community, independent living, and economic self-sufficiency to people with disabilities. This landmark civil rights law aimed to prevent discrimination in the workplace and guarantee equal access to public and private establishments for people with disabilities.
Undeniably, the ADA has opened countless doors—both literally and figuratively—for people with disabilities. Because of the ADA, elevators and ramps are commonplace. Sidewalks have curb cuts for wheelchair access and sign language interpreters are present at sporting events. Employers can no longer discriminate against people with disabilities and must provide reasonable accommodations to their employees. While the ADA has not eradicated all accessibility barriers, it has resulted in far greater inclusion and accessibility and much less discrimination.
Yet despite these important successes, people with disabilities continue to experience substantial health disparities. Compared with nondisabled women, women with disabilities are far less likely have received a Pap smear in the past three years or to have received a mammogram in the past two years. Similarly, people with disabilities often experience difficulties or delays in getting health care and often do not make an annual dental visit, according to a 2015 article in the New England Journal of Medicine. People with disabilities are also at higher risk of adverse health outcomes, such as obesity and hypertension.
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Moreover, for people with disabilities who are multiply marginalized, the health disparities are even greater. “Aside from the public health issues that most racial/ethnic minorities face, minorities with disabilities experience additional disparities in health, prejudice, discrimination, economic barriers, and difficulties accessing care as a result of their disability—in effect, they face a ‘double burden,'” according to a 2011 report from the U.S. Department of Health and Human Services’ Office of Minority Health.
For example, the median life expectancy for white people with Down syndrome is 50 years, compared to 25 years for Black people, according to a 2001 study by the Centers for Disease Control and Prevention. Similarly, a 2016 study revealed that adults with intellectual and developmental disabilities who are Latino or Black have poorer health outcomes than white adults with intellectual and developmental disabilities; and adults with intellectual and developmental who are Latino or Black have worse health outcomes than nondisabled adults from the same racial and ethnic group.
While the causes of health disparities among people with disabilities are numerous, they often center on issues related to access. “I am in a major city with numerous health-care providers and networks and it is still difficult as a disabled woman who uses a wheelchair to find accessible health-care facilities,” Alice Wong, founder and director of the Disability Visibility Project, told Rewire News.
“In the past, I had to go to a separate office and provider [from my primary care provider] when I needed a pelvic exam using an adjustable-height exam table. I also had trouble monitoring my weight when wheelchair-accessible scales were unavailable or malfunctioning,” she continued.
Wong’s experiences are far too familiar for people with disabilities. A 2012 survey of nearly 2,400 primary care offices in California found that 8.4 percent of offices had an accessible examination table and only 3.6 percent had an accessible scale. That same study found that less than half of the offices surveyed were fully architecturally accessible (such as including ramps, elevators, or wide doors) to people with disabilities. Of course, the ADA should cover these accessibility barriers. However, it’s clear that stronger regulations are needed.
Because of this, people with disabilities were hopeful when the Obama administration proposed regulations that would have required making non-fixed medical equipment and furniture, such as examination tables and scales, accessible to people with disabilities. Unfortunately, on December 26, 2017, the U.S. Department of Justice (DOJ) withdrew four Advance Notices of Proposed Rulemaking pertaining to the ADA, including these proposed regulations.
“When I read about the withdrawal of rules requiring accessibility of medical equipment it showed me that this is one out of a million ways the current Administration is eroding disability and civil rights,” Wong said to Rewire.News.
“It is already a struggle for many people with disabilities to get their health care providers and hospitals to comply with the ADA. Many people have been adversely impacted and experienced delayed care that resulted in harm, especially during emergency or life-threatening cases,” Wong continued.
The DOJ says it is “reevaluating whether regulation of the accessibility of non-fixed equipment and furniture is necessary and appropriate.”
The DOJ’s withdrawal of these rules is not the only recent attack on the accessibility of medical equipment and furniture. In fact, the Affordable Care Act (ACA), which the GOP has repeatedly tried to repeal, included an amendment to the Rehabilitation Act of 1973, the first federal civil rights law for people with disabilities, authorizing the U.S. Access Board to promulgate accessibility standards for medical diagnostic equipment.
These standards, which became effective in February 2017, provide minimum technical criteria to ensure that medical diagnostic equipment, such as examination tables, examination chairs, weight scales, mammography equipment, and other imaging equipment used by health-care providers for diagnostic purposes are accessible for people with disabilities. While these standards are an important step toward improving the accessibility of health care, they do not impose any mandatory requirements on health-care providers and are not enforceable. Their future is also unclear if the GOP is eventually successful at repealing the ACA.
Of course, ensuring that all people with disabilities enjoy full and equal access to health care goes beyond removing physical barriers. Indeed, people with disabilities also contend with programmatic barriers, such as inaccessible communications. According to the National Association of the Deaf, “Health care is routinely inaccessible to deaf people due to communication and linguistic barriers. Individuals whose language is American Sign Language (ASL) or another sign language are often denied access to the health care system because most providers do not provide adequate communication access in ASL or any other sign language, through qualified interpreters …. As a result, it is often a struggle for deaf individuals to find a health care provider with whom they can effectively communicate.”
Additionally, the rising costs associated with health care are notable barriers for people with disabilities. According to the National Council on Disability, “Health care insurance availability, affordability, and coverage for important benefits—including medications, long-term care, durable medical equipment, mental health, rehabilitative and specialty care, and care coordination—are key issues for people with disabilities. Yet national surveys have reported that people with disabilities commonly experience difficulty navigating the insurance system, finding and obtaining approval to visit specialists, and obtaining durable medical equipment. Estimates suggest that these factors obstruct or delay care for as many as 30-50 percent of adults with disabilities.”
People with disabilities are a substantial and growing population that transcend all identities, including race, ethnicity, immigration status, socioeconomic status, religion, gender identity, and sexual orientation. Approximately 56.7 million people—19 percent of the population—in the United States have a disability, according to the U.S. Census Bureau. Most people, if they are fortunate to live long enough, will acquire a disability at some point in their life. Indeed, as advancements in technology continue and life expectancies increase, the number of people with disabilities will grow. Hence, removing accessibility barriers in health-care establishments is an important national issue deserving of significant attention.
Since Donald Trump took office, people with disabilities have had to fight continuously to retain the necessary supports that enable them to live in their communities. While people with disabilities were successful—for now—in staving off attempts by the GOP to repeal the ACA, it is clear that the fight for full and equal access to health care is far from over.