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Among the discussion of racial equity and disparities in all areas of American life, disparities in healthcare utilization and people’s experiences with the healthcare system have picked up steam between policymakers, clinicians, analysts, and patients. As with any discussion, terminology, or the way the issue is described, can have a big impact on how people understand the challenges and solutions. Dr. Chanee Fabius, assistant professor at Johns Hopkins Bloomberg School of Public Health, says it’s important to differentiate between “health disparities” and “differences” when talking about health and healthcare outcomes.
“There are differences that we often see in groups that are the result of preferences or cultural beliefs,” she said. “But the disparities come in when there are negative health experiences that cannot be justified by any of those factors. It could be the result of racism, the result of sexism, it could be the result of any ‘-ism’ that would prevent or reduce the level of access people have to good, quality healthcare, or that could negatively impact their health directly.” There is mounting evidence suggesting that people with disabilities experience persistent health disparities. Many people with disabilities have access to healthcare through Medicaid, and utilize Medicaid waivers to obtain home and community-based services (HCBS). The HCBS system is often difficult to navigate, which impacts timely access to quality care. Examining contributors to health disparities, not just for people with disabilities but more generally, can help to identify possible solutions.
However, research conducted by The Kaiser Family Foundation found that healthcare is a “relatively weak” determinant of health disparities, including ones related to COVID-19, compared with social determinants of health, like socioeconomic status, education level, the condition of neighborhoods, and employment status. Access to care alone was a less important factor than analysts at Kaiser expected. “What we’ve seen is that the broader and underlying social and economic inequities that are rooted in historic and ongoing racism in this country have persisted and grown across generations and have impacted healthcare and health outcomes for people of color,” says Latoya Hill, senior policy analyst at The Kaiser Family Foundation.
What we’ve seen is that the broader and underlying social and economic inequities that are rooted in historic and ongoing racism in this country have persisted and grown across generations and have impacted healthcare and health outcomes for people of color.
Latoya Hill, senior policy analyst at The Kaiser Family Foundation
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The expansion of Medicaid through the Affordable Care Act was intended to increase access to healthcare, especially for individuals representing populations that experience disparities (e.g., racial minorities, people with disabilities, etc.). Madeline Guth and colleagues at Kaiser Family Foundation conducted a recent analysis that looked at the relationship between health outcomes and health quality with factors like enrollment after Medicaid expansion, access to health care and use of health services. The study found that “Medicaid expansion contributed to reductions in longstanding disparities in health coverage,” Guth says. In the access and use categories of the study, the responses were “more mixed.” They also found many health disparities among Black and American Indian or Alaska Native respondents compared to White respondents in areas like physical/mental wellness and deaths resulting from complications of chronic conditions. While many of these outcomes are influenced by access to healthcare, simply enrolling in health coverage “is not enough to eliminate [racial] disparities,” even though it did help increase access to care and improve health.
“Health coverage like Medicaid can be a source to eliminate health disparities, but that’s not the only place where that happens,” Guth says. “When we talk about something like access to care, there are so many factors that go into that besides having health coverage. Yes, people are getting coverage, and yes, the disparities in coverage were decreasing, but there were still other questions on access, so maybe that has to do with delivery.” Delivery of services, socio-economic barriers to using care, and other factors outside of the clinic are some of other the external contributors to these disparities.
For this reason, Guth also calls Medicaid expansion a “pathway to Home and Community-Based Services,” particularly in rural states that expanded Medicaid to cover more people with disabilities. “While many Medicaid enrollees with disabilities do receive Supplemental Social Security Income, most of them actually don’t,” she said. Generally, the incomes of people with disabilities are often lower than those without disabilities, even if they are not Medicaid beneficiaries. But for those receiving Medicaid services, these avenues to care, and others created by individual states, are crucial to mitigating adverse outcomes for people with disabilities.
When we talk about something like access to care, there are so many factors that go into that besides having health coverage. Yes, people are getting coverage, and yes, the disparities in coverage were decreasing, but there were still other questions on access, so maybe that has to do with delivery.
Madeline Guth, Policy Analyst at The Kaiser Family Foundation
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Hill said part of the reason for these disparities is because of concrete factors like time and money. Employment, income, and education “impact the resources one has to be able to effectively access healthcare, whether that’s through additional, expendable dollars to be able to pay for certain services out of pocket, whether that’s having a quality job that includes benefits, and even having educational status to be able to fully understand the different aspects of the health care process, and being able to navigate that,” she says.
Hill’s research on intersectionality reveals further complexity regarding disability status. “Being a member of multiple underserved groups, whether it’s race, gender, disability status, all of those further increase the barriers to accessing health care, and the risk for poor health outcomes,” she explains. The National Council on Disability (NCD) looked at the relationship between ability to access care and having a disability or disorder. “Disability status remains associated with much greater risk of delayed or foregone care, and mental health disability is associated with greater likelihood of being uninsured (compared to the general population),” according to the journal. For example, NCD found a lack of accessible office equipment for pregnant women with disabilities, as well as delayed care for procedures such as mammograms and Pap smears. In addition, NCD’s report noted that much federal research is primarily focused on disability and disease prevention, rather than on improving healthcare access, outcomes, and healthy lifestyles of people with disabilities.
As a result of these and other findings, the NCD has designed a framework for health equity outlining four main tenants. They include teaching cultural competency related to the disability community in medical schools; regulating medical equipment so that it is accessible to people with a variety of disabilities; adopting more and better data collection on the ways in which people with disabilities experience the health care system; and the “designation of all people with disabilities as a special medically underserved population.”
Any population that you could expect to have barriers in their time, in their resources, in language access, there might need to be more resources there to connect people to care.
Madeline Guth, Policy Analyst at The Kaiser Family Foundation
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A 2021 issue brief written by Elizabeth Hinton and Lina Stolyar recommended that to remedy the gaps in coverage created by social determinants of health, states can rely on Medicaid waiver programs to improve some of the poor outcomes. Traditionally, states were prevented from using Medicaid funds to pay for nonmedical services, like housing and food. But with state Medicaid waiver programs, they can add certain nonmedical services to their benefits packages, like housing, employment, and case management.
Guth agreed that states can rely on Medicaid waiver programs to offer these nonmedical services but emphasized that some recipients of Medicaid might struggle with the complexity of the system, and might not have the time that she, as an analyst, has each day to navigate it. “We know from researching Medicaid that it is not necessarily simple. We’re spending all of our time trying to understand it, and it’s also different from state to state,” she said. “Any population that you could expect to have barriers in their time, in their resources, in language access, there might need to be more resources there to connect people to care.” She also noted that surveys designed to analyze success metrics typically don’t ask about the reasons a person might not be able to pay for care. “When we look at these affordability metrics, those are self-reported,” she said. “They’re generally asking people, ‘Is your care affordable?’ or ‘Did you forego needed medical care because of cost?’ You would expect that having Medicaid coverage should make it likelier that you say that you can afford your care. So, what’s missing?” As analysts, providers, consumers, and payors search for ways to fill the gaps in coverage, all are mindful that expanding access to the health care system is only one aspect of the solution, and one that does not address all the root causes. Though many of these root causes are systemic, the Administration for Community Living (ACL) is among the organizations attempting to alleviate the issue for older adults and people with disabilities.
In addition to providing a variety of grants to organizations working on this issue in the disability community, the Administration for Community Living suggests that “cultural competency is critical to reducing health disparities and improving access to health care that is respectful of and responsive to diverse needs.” Tools like the CDC’s “Health Equity Guiding Principles for Inclusive Communication,” as well as The Health Resources and Services Administrations’ “Culture, Language, and Health Literacy” page provide tips for how to effectively communicate issues of health equity, health literacy, and cultural differences in health. To offset the disparities in care and make sure the needs of diverse communities are met, policymakers, providers, and researchers should keep these diverse needs in mind when building solutions to tackle these complex and systemic challenges.
Sources:
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Administration for Community Living. “Diversity and Cultural Competency.” Administration for Community Living, 08 Dec. 2021, .
Artiga, Samantha. “Heath Disparities are a Symptom of Broader Social and Economic Inequities.” Kaiser Family Foundation, 01 Jun. 2020, .
Fabius, Chanee. Personal interview. 17 Feb. 2022.
Guth, Madeline, et al. “Effects of the ACA Medicaid Expansion on Racial Disparities in Health and Health Care.” Kaiser Family Foundation, 30 Sept. 2020, .
Guth, Madeline. Personal interview. 21 Jan. 2022.
Hill, Latoya. Personal interview. 28 Jan. 2022.
Hinton, Elizabeth, and Lina Stolyar. “Medicaid Authorities and Options to Address Social Determinants of Health (SDOH). Kaiser Family Foundation, 05 Aug. 2021, .
United States, National Council on Disability. NCD Letter to NIMHD, AHRQ regarding health disparity population designation for people with disabilities. National Council on Disability, 7 Dec. 2021,