NIH Pushed to Recognize Health Disparities for People with Disabilities

Researchers at the University of Virginia and Johns Hopkins University issued a call to action urging the National Institutes of Health (NIH) and other federal agencies to validate the health disparities suffered by individuals with disabilities.

They argued that healthcare access is not the same for people with disabilities, largely due to the influence of structural ableism. The experience of having a disability is shaped by built, social, political, and economic environments.

As a direct offshoot of this structural ableism, people with disabilities encounter disparities across various social determinants of health.

“People with disabilities face substantial inequities in numerous social determinants of health, ranging from education and employment to housing and transportation, to access to broadband and other technologies,” study co-authors Rupa S. Valdez, PhD, from UVA Health and her colleague Bonnielin K. Swenor, PhD, MPH, at Johns Hopkins, wrote.

“They also experience inequities in health care quality and access stemming from physical, attitudinal and communication barriers; inadequate professional training in legal obligations and the needs of people with disabilities; and inadequate knowledge regarding, and reimbursement for, accommodations,” the pair added.

Even medical spaces often lack the necessary accessibility for people with disabilities. These spaces, intended for providing healthcare, frequently fall short of accommodating the needs of individuals with disabilities.

The authors cited an anonymous focus group in which providers admitted their offices lacked proper accommodation for people with physical disabilities. As a result, the clinicians had to advise patients to weigh themselves at unconventional locations such as supermarkets, grain elevators, cattle processing plants, or even zoos.

“Despite the Americans with Disabilities Act being passed over 30 years ago, much work remains to be done to ensure that people with disabilities have equal access, opportunities, and rights,” Valdez said.

Recognition of health disparities is the first step to mitigating these inequities and enhancing health outcomes. Valdez and Swenor said such recognition could expedite policy changes and motivate government action to rectify these issues.

However, without bestowing health disparity status upon the largest minority group in the US and globally—individuals with disabilities—health equity is limited while research falls short of its full potential.

The researchers suggested that clinicians and policymakers need metrics to effectively gauge structural ableism and the barriers faced by individuals with disabilities. These metrics could align with those used for addressing racial disparities, yet they should also be specific to disability experiences.

For instance, self-reported experiences of unfair treatment could be adapted to measure structural ableism. In housing, metrics might consider instances of mortgage denial. Moreover, it's crucial to account for accessibility in the built environment, such as the prevalence of wheelchair-accessible curb cuts or intersections with audible crosswalk signals in a given area.

Additionally, metrics such as the proportion of people with disabilities who are institutionalized in a region could also be included. These nuanced measures would present a clearer picture of the structural barriers that this community faces and guide the path toward enhanced inclusivity and equity.

The researchers also underscored the value of local partnerships with the disability community to ensure inclusivity and honor the diversity of disability experiences in research.

“Researchers, advocates, and policymakers will have to partner with the wide range of people in the disability community to ensure that efforts are inclusive of the diversity of disability experiences,” the researchers wrote.

“True partnership requires eliminating barriers to participation by people with disabilities in efforts related to science, technology, engineering and math; it also means promoting the inclusion of researchers and clinicians with disabilities,” they Valdez and Swenor continued. “This approach honors a long-time motto of the disability community: Nothing about us without us.”

By examining existing disparities and their causes, researchers stated it could stimulate critical dialogues, allocate resources, and nurture a strong commitment to change.