Center for American Progress

Improving Health Outcomes for Black Women and Girls With Disabilities

Improving Health Outcomes for Black Women and Girls With Disabilities

The COVID-19 pandemic has exposed disparities in access, care, and health outcomes that Black disabled women and girls have had to face.

Part of a Series
In this article
A woman, left, studies Braille with a volunteer teacher.
A woman, left, studies Braille with a volunteer teacher in Richmond, California, April 2019. (Getty/Jane Tyska/Digital First Media/East Bay Times)

Black Women and Girls With Disabilities Series

This series examines the impacts of structural racism, sexism, and ableism on the education, health outcomes, and economic security of Black women and girls with disabilities in the United States.

Introduction and summary

Authors’ note: The disability community is rapidly evolving to use identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this report, the terms are used interchangeably.

Studies show that people with disabilities are more likely than people without disabilities to report having poorer health and less access to adequate health care.1 This is especially true for women and girls of color with disabilities, who face inequalities because of their disability status, race, and gender.2 The systemic and structural barriers faced by Black disabled women and girls in the health care system stem from a legacy of slavery, ongoing anti-Black racism, and ableism.

The COVID-19 pandemic exposed and exacerbated those inequalities. According to the Centers for Disease Control and Prevention, Black Americans are dying from COVID-19 at nearly twice the rate of white Americans and have hospitalization rates that are nearly three times higher.3 People with disabilities are also disproportionately contracting and dying from COVID-19.4

Data are more limited for people with intersecting identities. Specifically, there are insufficient data on the impact of COVID-19 on women—and even less on Black women and still less for Black women with disabilities. According to a study from January 2021,5 U.S. counties with disproportionately high populations of people with intellectual or developmental disabilities experienced higher rates of COVID-19. People with intellectual disabilities are also largely people of color, young, female, and below poverty.6 Moreover, an intellectual disability was the strongest indicator of a COVID-19 diagnosis and, other than age, the strongest independent factor for COVID-19 mortality.7

Though incomplete, the data do suggest that 10 percent to 30 percent of COVID-19 patients develop long-haul symptoms—that is to say, they do not fully recover and experience symptoms lingering for weeks, months, or longer.8 Other studies suggest that up to one-third of COVID-19 patents will experience these kinds of symptoms, resulting in a larger disabled community.9

This report discusses the implications of being a Black disabled woman or girl in the U.S. health care system. It also highlights the historical nature of disparities in health care and some of the social determinants of health10 for Black disabled women and girls. Finally, it briefly examines the shifting conversation around health access, outcomes, COVID-19, and the vaccine.

As with the other publications in this series, this report draws from interviews and roundtable conversations that the Center for American Progress hosted with Black disabled women and girls to understand their views on issues central to health disparities in their communities. Finally, this report offers recommendations to help create a more equitable health care system, including actions such as investing in data collection; expanding Medicaid and other affordable options; and ensuring robust health and social supports.

The Disability Justice Initiative at the Center for American Progress hosted a series of three virtual roundtables in June 2021 with Black women and girls with disabilities. This report is based on the third roundtable, which focused on disparities in access to quality health care and poorer health outcomes. CAP asked participants about myths surrounding race, gender, or disability in medical care; what barriers they experience in accessing COVID 19 testing, vaccinations, or treatment; and what an equitable recovery looks like.

Health disparities stemming from a legacy of racism, sexism, and ableism

The historical racism, sexism, and ableism in the health care system has direct implications for health access, care, and outcomes today.

The eugenics movement

The eugenics movement advanced the belief that certain human populations are genetically superior to others and sought to limit reproduction for populations deemed genetically inferior.11 It gained traction in the United States in the early 1900s, with the first state law aimed at preventing “the procreation of confirmed criminals, idiots, imbeciles, and rapists” passed in Indiana in 1907.12 In many cases, people who lived in institutions were forcibly sterilized without their knowledge or informed consent13—a practice upheld by the U.S. Supreme Court in the 1927 case Buck v. Bell.14 The case involved Carrie Buck and the state of Virginia, which intended to sterilize Carrie because it deemed her “feebleminded.” The Supreme Court ruled in favor of Virginia, and Chief Justice Oliver Wendell Holmes Jr. wrote in his opinion, “Three generations of imbeciles are enough.”15

The eugenics movement was also driven by racism. For example, data from 1950 to 1966 show that Black women were sterilized at three times the rate of white women and at 12 times the rate of white men.16 Hospitals in the South would routinely perform unnecessary hysterectomies on women of color.17 The federal government also forced and funded the sterilization of Native Americans into the 1970s.18 These sorts of forced sterilization programs occurred in more than 30 states and sterilized an estimated 65,000 people.19 Many studies of these programs estimate that the numbers are probably much higher.20

The United States was an international leader in eugenics and even informed similar programs in Nazi Germany.21 In some respects, racially tinged sterilization policies and practices have continued to the present day.22 According to the Center for Investigative Reporting, between 2006 and 2010, at least 148 pregnant women—most of whom were Black and Latina—received tubal ligations after giving birth while incarcerated at two California prisons.23 These practices have also occurred as recently as 2020 in immigration detention centers.24 While many states have repealed their sterilization statutes, the Supreme Court has never formally overturned Buck v. Bell.

Ongoing bias in the medical field

Mistrust of the medical profession goes beyond links to the eugenics movement and partly stems from long-standing bias in medical research and treatment. One of the most notorious examples is the Tuskegee study, in which Black men infected with syphilis were denied treatment without their knowledge for nearly 40 years, starting in the 1930s.25 Other examples of medical mistreatment include the practices of Dr. James Marion Sims, the “father of modern gynecology,” who performed experiments on enslaved Black women without the use of anesthesia, citing the racist belief that Black people do not feel pain like white people.26 And in the 1950s, John Hopkins University harvested the cells of Henrietta Lacks, a Black woman, without her consent; her cells were then used in cell research around the world.27

Unfortunately, research shows that bias, including unconscious bias, among medical providers remains a problem.28 According to a 2016 study in the Proceedings of the National Academies of Sciences of the United States of America, 40 percent of first- and second-year medical students believed that “[B]lack people’s skin is thicker than white people’s.”29 Others believed that Black people are less sensitive to pain and were less likely to appropriately treat Black people’s pain.30

[I wish people] knew how deep ableism is in the medical system. Eman Rimawi-Doster, a Black Palestinian disabled woman

From the roundtable: Personal experiences of medical discrimination

No strangers to disparate treatment in medical settings, CAP roundtable participants shared stories about how bias continues to affect the care that they receive:

  • After Heather Watkins, a Black disabled woman and disability advocate, gave birth to her daughter, the doctors asked her, “Are you really sure you can do this?” She recalls that her partner and mother were in the room providing support. At the time, Watkins thought the doctors asked the question because she looks young, but now, she wonders if they would have asked if she weren’t disabled.
  • Another roundtable participant—when asked if she could provide examples of how myths around race, gender, or disability influence medical care or interactions with the health care system—replied: “I could be here all day.”
  • Eman Rimawi-Doster, a Black Palestinian disabled woman, shared that at a young age, she noticed that that health care providers treated her differently, particularly when her mother was with her compared with when she was alone. Rimawi-Doster’s mother has darker skin, and Rimawi-Doster believes that her mother was not afforded the same level of respect and politeness because of her race. Rimawi-Doster also noted that the lack of respect and civility can be compounded when English is not the patient’s first language.
  • Another roundtable participant recounted a visit to the emergency room where she came in unable walk due to illness and pain. She said the hospital discharged her with a heating pad, lifted her into a cab, and sent her on her way.

Black disabled women during the roundtable and in separate interviews with the authors recalled the times that they did not seek treatment because they knew they would not be believed or be treated. They reported being were mindful of their behavior—even when in pain—in order to avoid being perceived as angry, dangerous, or threatening. They also recounted the frustrations of needing to be an informed patient in order to guarantee their care and of being branded as difficult patients when advocating for their needs. Other participants spoke about having to “credential” themselves to get treatment: One woman said that during one hospital stay, she had to consistently mention her age and Ph.D. to receive help with a bedpan. Another roundtable participant had to constantly remind staff that they are a disability advocate and could file a complaint.

A lack of intersectional health care data for disabled Black women and girls

It can be difficult to obtain an accurate picture of health disparities among certain populations, specifically people with disabilities.31 This is particularly true for data on COVID-19 and different demographics. State reporting varies widely,32 with some states and third parties having ceased tracking data all together. The COVID Tracking Project, for example—which was one of the most complete data trackers on COVID-19 and race and ethnicity—ended in March 2021.33 For people with intersecting identities, data are even more limited on health access, treatment, and outcomes, both prior to and after the onset of COVID-19. Moreover, data on the impact of COVID-19 on women are lacking—and there are even less data for Black women and still less for Black women with disabilities. There are also limited to no health data on nonbinary and transgender Black people.

However, it is clear that during the pandemic, Black people and people with disabilities continue to face significant differences in health outcomes compared with white people and people with no disabilities. As of February 10, 2022, Black or African American people were 2.5 times more likely to be hospitalized due to COVID-19 and 1.7 times more likely to die from COVID-19 compared with white, non-Hispanic people.34

Moreover, research suggests that people of color with disabilities are disproportionately affected by COVID-19.35 According to a January 2021 study,36 U.S. counties with disproportionately high populations of people with intellectual or developmental disabilities also had higher rates of COVID-19. More specifically, people with intellectual disabilities were also largely Black, Asian, Hispanic, or Native American and were young, female, and living below the poverty level.37 An intellectual disability was the strongest indicator of a COVID-19 diagnosis and, other than age, the strongest independent factor for COVID-19 mortality.38 Importantly, in studies reviewing intellectual disability and COVID-19 rates, the mortality rate was higher, but intensive care unit admissions were not. Further research is needed to determine whether patients with intellectual disabilities are less likely to receive higher levels of care.

In both the roundtable discussion and follow-up interviews, participants highlighted the consistent lack of care for people with disabilities. Most had stories of health care workers violating their HIPAA39 rights—federal law restriction release of medical information—or of being treated inhumanely by those same workers. For instance, Eman Rimawi-Doster said that the pandemic brought to light “how people don’t care about my disabled life.”40

Social determinants of health related to health disparities

Social determinants of health are factors that have implications for health outcomes and include poverty, income instability, food insecurity, quality of housing, and racism in its various forms.41 In general, African Americans have worse underlying health conditions than other populations due to the aforementioned factors.42 For example, Black families often live with worse air and water conditions than white families.43 As a result, Black children are more likely to have asthma due to higher rates of exposure to environmental pollutants, vehicular pollution, and mold spores.44 Furthermore, Black families are more likely to live in food deserts, where there is little to no access to healthy affordable food or quality care.45 For instance, the U.S. counties with the highest food insecurity rates have higher populations of African Americans—at least 60 percent.46 Further, African Americans experience hunger at twice the rate of white people, including 1 in 4 African American.47 Hunger can also lead to other health complications—for example, chronic illness, low birth weight, diabetes, and mental distress.48

Health care is often inaccessible

While federal laws, such as the Americans with Disabilities Act,49 prohibit discrimination, enforcement is severely lacking. This results range from persistent barriers to inadequate care or outright denial of care for people with disabilities.50 These barriers include but are not limited to lack of accessible equipment, including exam tables, X-ray equipment, weight scales, and exam chairs that are vital to routine medical exams;51 lack of accessible health communications such as qualified interpreters, Braille, and large-print material; lack of access to a medical navigator or patient advocate; and lack of medical providers.52

Access in medical settings is not limited to physical access. People with cognitive and sensory disabilities also report barriers such the inaccessibility of information.53 There are also barriers encountered before an office visit, including transportation and parking and inaccessible buildings. As mentioned above, disabled people have countless anecdotal stories of implicit bias, lack of cultural competency, and outright discrimination.54 A study from the Equal Rights Center found that less than one-quarter of doctors and hospitals offered large-print information, and only 24 percent offered any accessible format.55 Another study reviewing nine chain pharmacy companies and 18 individual retail pharmacy locations found that only two chain pharmacy companies and two individual pharmacy locations provided Braille labels.56 Of those same pharmacies, only five chain pharmacy companies and six individual pharmacy locations provided audible formats for labels.

Because of these types of barriers, people with disabilities experience disparities in accessing primary and preventative care. For example, 61.4 percent of women with disabilities reported having mammograms compared with 74.4 percent of women without disabilities.57 Further, only 64.6 percent of women with complex disabilities received Pap tests compared with 82.5 percent of women without disabilities.58 These barriers also exist in cancer screening, eye exams, and dental checkups.59

Health care shortages are key to disparities

Concerns over health care quality and access have grown as the country experiences staff shortages and hospital closures. Health care shortages are complex issues with different causes and ultimately different policy solutions. According to research from the University of North Carolina, 19 rural hospitals closed across the country in 2020, more than in other years.60 In counties where hospitals closed, the COVID-19 death rates were 37 percent higher than overall COVID-19 deaths in the state.61 In addition, hospitals in Black neighborhoods have been more likely than those in white neighborhoods to close.62 Those hospitals serving Black neighborhoods are also more likely to have worse safety conditions than hospitals serving white neighborhoods.63

Moreover, health care shortages vary by disciplines. Mental health and primary care are among some of the disciplines in shortest supply.64 In 2021, Health Resources and Services Administration data indicated that 87 million people live in areas with primary care practitioner shortages, and 139 million people live in areas with mental health practitioner shortages.65 Medically underserved populations often include people experiencing homelessness, low-income people, and people eligible for Medicaid.66

The pandemic has made shortages worse,67 highlighting long-standing issues in the medical profession. Many workers, specifically nurses, mention low wages, burnout, and dangerous conditions as causes for leaving their jobs and profession during the pandemic.68

These statistics only give a snapshot of the provider shortages along racial and urban/rural lines in the health care system. Health care shortages also vary between states with Medicaid expansion and nonexpansion states—especially important for disabled people.69 States that expanded Medicaid are set up to manage the COVID-19 pandemic and recession better than states that failed to expand.70

Health care is expensive and unaffordable for many

The United States spends more on health care than any other country but still has lower life expectancy rates than many other developed nations.71 Americans also have high personal health care costs. The U.S. Census Bureau collects comprehensive data on medical debt, which show that 26.5 percent of U.S. households with one or more members with a disability have medical debt, compared with 14.4 percent of U.S. households with no disabled members.72 Further, 27.9 percent of Black households have medical debt, compared with 17.9 percent of white households.73 In addition, due to cost barriers, one-sixth of adults with disabilities who needed health care did not receive that care.74 African Americans with disabilities were the most likely to face these cost barriers.75 While coverage expanded under the Affordable Care Act (ACA), high costs still impede access to care for some—not to mention that millions of individuals live in nonexpansion states. The average American family spends $8,200, or 11 percent of family income, per year on health care premiums, out-of-pocket costs, and prescription drugs.76 The average cost for health care premiums is almost 20 percent of annual household income for African American families.77 Women, particularly Black women, are more likely to report not being able to afford care, even with insurance.78

The disparate realities and outcomes of the COVID-19 pandemic

At the beginning of the pandemic, there was significant fear that COVID-19 would undermine health insurance coverage. A Commonwealth Fund survey from May to June 2020 showed that 40 percent of respondents and/or their partners who lost their jobs also lost insurance coverage.79 A more recent publication from CAP shows that the numbers of uninsured people did not rise to the levels feared because of coverage availability from programs such as Medicaid, the Children’s Health Insurance Program (CHIP), and the ACA.80 Prior to the pandemic, the uninsured rate among African Americans declined after the ACA was signed into law, but they are still more likely to be uninsured than white Americans. In 2018, the uninsured rate among Black Americans was 9.7 percent compared with just 5.4 percent among white Americans.81 While the job loss from COVID-19 did not cause as drastic of a spike in the uninsured rate as anticipated, millions of individuals still lack access to affordable health care.82

Disabled people were some of the first to indicate significant concerns about being left out of government COVID-19 proposals.83 According to a National Disability Institute survey, respondents reported concerns about accessing medical care; feared people with disabilities would be de-prioritized if their providers started rationing care; and feared losing personal care assistance.84 Many of their fears were founded, as hospitals indeed rationed care.85 News stories reported families suspecting that their disabled loved ones died of COVID-19 due to being de-prioritized.86 While home care staffing shortages were already a major concern, the pandemic exacerbated the issue.87 At least 145,270 residents in nursing homes, which include older adults and disabled people, have been confirmed as dying from COVID-19.

When it comes to the ravages of the virus, Black or African Americans are not only at higher risks of dying from COVID-19 but also at higher risk of contracting the virus.88 In part, these numbers are driven by the fact that Black workers are concentrated in service industries and occupations.89 These types of jobs and industries make social distancing harder and put Black workers at risk. Causing further risk, many of these jobs require employees to work under hazardous conditions, without proper protection, and with a lower likelihood of including paid sick and family leave or insurance coverage.90

While everyone has been affected by pandemic-related mental stress, the persistent news around the killing of Black people by police has further increased stress, anxiety, and community trauma among Black Americans.91 There is a need to further examine how COVID-19 and the racial unrest has increased mental health disparities.92

COVID-19 vaccine accessibility

People with disabilities and people of color have faced significant barriers to accessing the COVID-19 vaccine. Many groups, including the American Association of People with Disabilities and state groups such as Disability Rights California had to advocate for people with disabilities—specifically people with developmental disabilities—to be prioritized in the early vaccine release. Black people also faced barriers to accessing vaccines and were vaccinated at significantly lower rates than white individuals.93

The low vaccination rates can also be tied to mistrust of the medical system, lack of access to and information about vaccines, and other preexisting concerns such as ableism in the medical field. There is also a different challenge tied to inequitable vaccine access: issues such as the lack of transportation and an inability to take time off from work.

Black people have received smaller shares of vaccinations compared with their shares of cases, total population, and deaths in most states.94 As of February 10, 2022, the percentage of white people in the United States who received at least one COVID-19 vaccine dose was roughly 7 percent higher than for Black people.95 Lower vaccination rates among Black Americans lead to increased risk for coronavirus and could potentially lead to further disparities.

People with disabilities also experience accessibility barriers at vaccine distribution sites. These barriers may include physical inaccessibility for people with mobility-related disabilities.96 Moreover, millions of older adults, low-income people of color, and people with disabilities who are at higher risk of contracting the virus do not have cars, do not drive, do not live near public transit, or are homebound. In some locations, initiatives offered free rides to vaccination sites, but access concerns remained for many people with physical disabilities.97 It is important to note that many states did roll out programs to reach homebound individuals, but even those locales with such programs encountered challenges. One roundtable participant who received a vaccine through one of these programs noted her concerns of having additional strangers in her home during a pandemic and the lack of choice in the vaccine she received.

For those living in rural areas, often far from vaccination sites, finding transportation was exceedingly difficult. What’s more, public transit operations in many cities have also been reduced during the pandemic. Further examination and data should be collected on this and other matters related to accessibility—Specifically data on the accessibility of individual locations, buildings, and transportation. One roundtable participant recalled that when the vaccine rollout first began in her home state of Missouri, there were few to no sites accessible to residents in St. Louis. And the few sites available were located in suburbs, which are mostly white and wealthy— areas where someone living in St. Louis needed a car to access. Other roundtable participants noted the lack of vaccination site location information and insufficient information needed to determine if a location had ramps or places to rest while in line. Specifically, one participant said: “There was no place for me to find information about the accessibility of a vaccine location and nobody has answers when you ask about accessibility.”98

Vaccine rollout and the digital divided

The pandemic has amplified digital divide issues. Access to websites needed to schedule appointments or attend telehealth visits depends on numerous factors, including accessibility issues and internet access. Blind people and individuals with low vision faced significant difficulties scheduling vaccine or testing appointments due to inaccessible websites. In January 2021, a Kaiser Family Foundation investigation found accessibility issues on nearly all 94 COVID-19 vaccine webpages gathered from all 50 states and Washington, D.C., for the study.99

However, getting to these websites—as flawed as they may be—is impossible if one lacks access to a computer or the internet. Inequalities with internet and broadband access are common among racial minorities and those with low or no income—groups that are also among the hardest hit by the pandemic.100 Individuals without internet also miss out on other vital services that could affect their health or limit exposure to COVID-19, including telehealth services and online grocery delivery.101

When asked about creating an equitable health system, roundtable participant Eman Rimawi-Doster immediately emphasized investing in and keeping telehealth options available. She appreciated the time savings of a 30-minute online appointment versus having to spend numerous hours and expend energy traveling to and from an in-person appointment.

Compared with white households, Black households have less access to computers and the internet.102 For a particularly stark example of how the digital divide affects the vaccine rollout, a ProPublica report highlighted the experience of the poorest ZIP code in Shelby County, Tennessee, where 96 percent of residents are Black and 70 percent of households do not have internet access. These residents experienced challenges when getting the vaccine in particular because the country initially required appointments to be reserved online.103 There are many reasons for disparate vaccination rates, but the role that technology, transportation, and accessibility play in creating and exacerbating vaccination disparities must be addressed.


Health disparities existed prior to COVID-19 and will endure among marginalized groups long after the pandemic is over. Policymakers must work to eliminate barriers and guarantee accessible and affordable health care services for all Americans. However, roundtable participant Heather Watkins warns leaders and policymakers to not reset too quickly, saying that “it’s concerning to hear so many people focused on getting back to normal. Normal was not working for disabled people.”104

Below are some solutions to address the structural inequities that lead to disparate outcomes for Black disabled women and girls.

Increase intersectional data collection

Data collection has been a consistent theme through this discussion on Black women and girls with disabilities. As mentioned in the other reports in this series, there is a need to increase and prioritize intersectional data, specifically on health access and outcomes. The call for increased data must include Black disabled women, the LGBTQI+ community, and specifically Black transgender and nonbinary people with disabilities. Securing disaggregated data is critical to policymakers’ ability to articulate disparities—and promote equitable, targeted solutions.

Pass paid family and medical leave

Also mentioned in the other reports in this series, paid family and medical leave is a critical policy to support people with disabilities and their families.105 Federal policymakers must pass a permanent and inclusive paid family and medical leave law.106

Invest in home- and community-based services

Institutions and congregate settings were some of the most dangerous places during the pandemic.107 While CAP supports increased investment in home- and community-based services in future legislation, the federal government must devote more permanent funding to services allowing people to live safely in their communities.

Pass the Social Determinants for Moms Act

This bill would establish an interagency task force that would develop solutions to address social determinants of health for pregnant and postpartum people; provide funding increases; and ensure access to safe and affordable housing, transportation, and nutrition.108 The bill also requests that the National Academies of Sciences, Engineering, and Medicine conduct a study on the effects of extreme heat, air pollution, poor water quality, and environmental chemicals on maternal and infant health outcomes.

Guarantee universal health coverage

Policymakers should implement health care coverage that would strengthen, streamline, and integrate Medicaid and work toward achieving universal health coverage for all Americans. This should include health coverage for long-term services and supports and mental health care. It is critical for states that have not yet expanded Medicaid to do so and permanently close the Medicaid coverage gap.109 States should move forward with Medicaid buy-in programs that allow people with disabilities to buy Medicaid coverage, as well as public options, which can significantly improve health equity.110 In addition, states should adopt policies that increase coverage and improve affordability under the ACA to improve health outcomes and reduce health disparities.111 State and federal policymakers can also improve Medicaid coverage by employing continuous enrollment for adults, postpartum coverage, and easing the transitions between Medicaid and marketplace coverage.112

Adopt the accessible medical equipment standards

The National Council on Disability recently released a report on the physical accessibility barriers to medical diagnostic equipment for preventative, primary, and specialty care. The report found that equal access to health services are not being adopted and enforced effectively at all levels of the government. Both the U.S. Department of Justice’s (DOJ) Disability Rights Section and the U.S. Department of Health and Human Services’ Office for Civil Rights (HHS OCR) should adopt and enforce the Access Board’s Accessible Medical Equipment Standards to improve access to health care for disabled people.113 The report calls for the HHS OCR to require health care providers to acquire accessible equipment; the DOJ to develop technical assistance on accessible equipment; and the U.S. Department of Education to develop training on accessible equipment and require medical residency programs to include disability competency training.

Ensure robust health and social supports

It is critical that policymakers update, strengthen, and fund social programs for an equitable recovery, such as the Supplemental Nutritional Assistance Program (SNAP), renters’ protections and assistance, unemployment insurance, and Social Security to better match the needs of the most marginalized. This also includes increasing funding and access to mental health services, peer support services, and other culturally competent community-based mental health services. CAP has criticized means testing and asset limits that perpetuate economic hardships for people with disabilities and already vulnerable populations.114 The modernization of the U.S. Social Security Administration is long overdue, and the COVID-19 pandemic has only intensified that need. People experiencing COVID-19 long-haul symptoms could overwhelm the already overworked and underfunded disability benefits system.115 In addition, prior to the COVID-19 pandemic, the system was already hard to navigate and is clearly ill-equipped to handle COVID-19 long-haul symptoms that are not yet easy to document or diagnosis. Officials must update policies and issue guidance related to people experiencing such symptoms, increase support and education campaigns around services, and eliminate waiting periods built into the disability insurance program.

Expand telehealth services

In response to the COVID-19 pandemic, health care payers, including the federal government, changed coverage and payment for telehealth services. The lack of reliable internet connections, along with varying degrees of technology access and literacy, can result in families forgoing or delaying medical care.116 Policymakers should consider removing coverage and reimbursement limitations, expanding the list of eligible sites, and investing in telehealth infrastructure.117 Lawmakers must also act to improve access to broadband and cellular coverage and ensure patients’ privacy while using telehealth services.118


Policymakers should reimagine the U.S. health care system to ensure the physical and mental health well-being and self-determination of the most marginalized populations. An equitable health care system must create conditions that allow all communities, including the Black and disabled community, to heal from generational health and medical trauma.

As noted in the other reports in this series, efforts to address the disparities experienced by Black women and girls with disabilities must start with comprehensive and intersectional data collection. Policymakers must prioritize transitioning people with disabilities out of dangerous institutions and congregate settings; ensure accessibility and equity around COVID-19 vaccines; and ensure nondiscrimination in all health care services.

This report is not a complete look at the health care system or at the policy recommendations and substantive conversations that need to continue around equitable care, accessibility, and affordability; it’s only an important step in securing a more equitable health care system for Black disabled women and girls.


The author would like to thank Taryn Williams, former managing director for the Poverty to Prosperity Program at CAP; Kyle Ross for fact-checking assistance; the Racial Equity and Justice, Health Policy, Poverty to Prosperity Program, and Women’s Initiative teams for their review; and CAP’s Editorial and Art teams for their guidance.


  1. Centers for Disease Control and Prevention, “Disability and Health Information for Health Care Providers,” available at (last accessed July 2021).
  2. Rosaly Correa-de-Araujo, “Integrated health care for women of color with disabilities” (Washington: American Psychological Association, 2016), available at
  3. Centers for Disease Control and Prevention, “Risk for COVID-19 Infection, Hospitalization, and Death By Race/Ethnicity,” available at (last assessed July 2021).
  4. Joseph Shaprio, “COVID-19 Infections And Deaths Are Higher Among Those With Intellectual Disabilities,” NPR, June 9, 2020, available at
  5. Jayajit Chakraborty, “Social inequalities in the distribution of COVID-19: An intra-categorical analysis of people with disabilities in the US,” Disability and Health Journal 14 (1) (2021), available at
  6. MaryBeth Musumeci and Priya Chidambaram, “COVID-19 Vaccine Access for People with Disabilities” (San Francisco: Kaiser Family Foundation, 2021), available at
  7. Jonathan Gleason and others, “The Devasting Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States,” NEJM Catalyst, March 5, 2021, available at
  8. Rita Rubin, “As Their Numbers Grew, COVID-19 ‘Long Haulers’ Stump Experts,” Journal of the American Medical Association 324 (14) (2020): 1381–1383, available at; UC Davis Health, “Studies show long-haul COVID-19 afflicts 1 in 4 COVID-19 patients, regardless of severity,” March 30, 2021, available at
  9. Ibid.
  10. U.S. Department of Health and Human Services, “Social Determinants of Health,” available at (last assessed July 2021).
  11. According to Merriam-Webster, eugenics is “the practice or advocacy of controlled selective breeding of human populations (as by sterilization) to improve the population’s genetic composition.” See Merriam-Webster, “Eugenics,” available at (last accessed February 2022).
  12. Disability Justice, “The Right to Self-Determination: Freedom from Involuntary Sterilization,” available at (last assessed February 2022).
  13. Fresh Air, “The Supreme Court Ruling That Led To 70,000 Force Sterilizations,” NPR, March 7, 2016, available at
  14. Buck v. Bell, 274 U.S. 200 (1927), available at
  15. Disability Justice, “The Right to Self-Determination.”
  16. Alexandra Stern, “Forced sterilization policies in the US targeted minorities and those with disabilities – and lasted into the 21st century,” University of Michigan Institute for Healthcare Policy and Innovation, September 23, 2020, available at
  17. Lisa Wade, “Sterilization of Women of Color: Does ‘Unforced’ Mean Freely Chosen?” Ms. Magazine, July 21, 2011, available at
  18. Gregory W. Rutecki, “Forced Sterilization of Native Americans: Late Twentieth Century Physician Cooperation with National Eugenic Policies,” Center for Bioethics and Human Dignity, October 8, 2010, available at
  19. Equal Justice Initiative, “Racial Eugenics,” October 1, 2013, available at
  20. Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck (New York: Penguin Press, 2016).
  21. Stefan Kühl, The Nazi Connection: Eugenics, American Racism, and German National Socialism (New York: Oxford University Press, 1994).
  22. David M. Perry, “Our Long, Troubling History of Sterilizing the Incarcerated,” The Marshall Project, July 26, 2017, available at
  23. Shilpa Jindia, “Belly of the Beast: California’s dark history of forced sterilizations,” The Guardian, June 30, 2020, available at
  24. Rachel Treisman, “Whistleblower Alleges ‘Medical Neglect,’ Questionable Hysterectomies Of ICE Detainees,” NPR, September 16, 2020, available at
  25. Centers for Disease Control and Prevention, “The U.S. Public Health Service Syphilis Study at Tuskegee: The Tuskegee Timeline,” available at (last accessed February 2022).
  26. Brynn Holland, “The ‘Father of Modern Gynecology’ Performed Shocking Experiments on Enslaved Women,” History, August 29, 2017, available at
  27. Black Women’s Roundtable, “Black Women in the U.S. 2021: Priorities, Policy and Power” (Washington: 2021), available at
  28. Janice A. Sabin, “How we fail black patients in pain,” Association of American Medical Colleges, January 6, 2020, available at
  29. Ibid.
  30. Ibid.
  31. National Council on Disability, “The Current of Health Care for People with Disabilities,” available at (last accessed February 2022).
  32. Musumeci and Chidambaram, “COVID-19 Vaccine Access for People with Disabilities.”
  33. The Atlantic, “The COVID Track Project: The COVID Racial Data Tracker,” available at (last accessed February 2022).
  34. Centers for Disease Control and Prevention, “Risk for COVID-19 Infection, Hospitalization, and Death By Race/Ethnicity,” available at (last accessed February 2022).
  35. Musumeci and Chidambaram, “COVID-19 Vaccine Access for People with Disabilities.”
  36. Chakraborty, “Social inequalities in the distribution of COVID-19.”
  37. Musumeci and Chidambaram, “COVID-19 Vaccine Access for People with Disabilities.”
  38. Gleason and others, “The Devasting Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States.”
  39. U.S. Department of Health and Human Services, “Health Information Privacy,” available at (last assessed July 2021).
  40. Eman Rimawi-Doster, roundtable participant, interview with authors via videoconference, May 26, 2021, on file with authors.
  41. Centers for Disease Control and Prevention, “Social Determinants of Health: Know What Affects Health,” available at (last assessed July 2021).
  42. Reis Theabult, Andrea Ba Tran and Vanessa Williams, “The coronavirus is infecting and killing black Americans at an alarmingly high rate,” The Washington Post, April 7, 2020, available at
  43. Christian Weller, “Systemic Racism Makes Covid-19 Much More Deadly For African-Americans,” Forbes, June 18, 2020, available at
  44. Princeton University Woodrow Wilson School of Public and International Affairs, “Study links unhealthy segregation neighorboods to childhood asthma,” Science Daily, August 7, 2017, available at
  45. Whitney Sherman, “Research Shows Food Deserts More Abundant in Minority Neighborhoods,” Johns Hopkins Magazine, Spring 2014, available at
  46. Jamila Taylor, “Racism, Inequality, and Health Care for African Americans” (Washington: The Century Foundation, 2019), available at
  47. Ibid.
  48. Ibid.
  49. The Americans with Disabilities Act (ADA) requires health care providers to provide equal access to their health care services and facilities. It applies to hospitals, clinics, and health care services. See ADA National Network, “Accessible Health Care,” available at (last accessed February 2022).
  50. Disability Rights Education and Defense Fund, “Disability Healthcare Access Brief” (Berkeley, CA: 2007), available at
  51. Laura VanPuymbrouck, “People With Disability Face Barriers to Basic Health Care,” U.S. News and World Report, October 4, 2019, available at
  52. Rachel Bluth, “For the disabled, a doctor’s visit can be literally an obstacle course — and the laws can’t help,” The Washington Post, October 28, 2018, available at–and-the-laws-cant-help/2018/10/26/1917e04c-d628-11e8-aeb7-ddcad4a0a54e_story.html.
  53. Rob Gould and others, “Research Brief: Health Care Access and the ADA” (Washington: ADA National Network, 2019), available at
  54. VanPuymbrouck, “People With Disability Face Barriers to Basic Health Care.”
  55. Equal Rights Center, “Equal Rights Center Investigation Uncovers Widespread Accessibility Violations by Medical Care Providers,” Press release, November 2, 2011, available at
  56. U.S. Government Accountability Office, “Prescription Drug Labels: Actions Needed to Increase Awareness of Best Practices for Accessible Labels for Individuals Who Are Blind or Visually Impaired” (Washington: 2016), available at
  57. Gould and others, “Research Brief: Health Care Access and the ADA.”
  58. Ibid.
  59. VanPuymbrouck, “People With Disability Face Barriers to Basic Health Care.”
  60. UNC Health Services Research, “Rural Hospital Closures,” available at (last accessed February 2022).
  61. Olivia Goldhill, “Shuttered hospitals, soaring Covid-19 deaths: Rural Black communities lose a lifeline in the century’s worst health crisis,” Stat, May 26, 2021, available at
  62. Joseph P. Williams, “Code Red: The Grim State of Urban Hospitals,” U.S. News and World Report, July 10, 2019, available at; Michelle Ko and others, “Residential segregation and the survival of U.S. urban public hospitals,” Medical Care Research and Review 71 (3) (2014): 243–260, available at
  63. Anuj Gangopadhyaya, “Black Patients Are More Likely Than White Patients to Be In Hospitals with Worse Patient Safety Conditions” (Washington: Urban Institute, 2021), available at
  64. Taylor, “Racism, Inequality, and Health Care for African Americans.”
  65. Health Resources and Services Administration, “Shortage Areas,” available at (last accessed January 2022).
  66. Taylor, “Racism, Inequality, and Health Care for African Americans.”
  67. Laura Romero and Jay Bhatt, “Pandemic has made shortage of health care workers even worse, say experts,” ABC News, May 21, 2021, available at
  68. Ibid.
  69. Rachel Garfield, Kendal Orgera, and Anthony Damico, “The Coverage Gap: Uninsured Poor Adults in States that Do Not Expand Medicaid” (San Francisco: Kaiser Family Foundation, 2021), available at; MaryBeth Musumeci and Kendal Orgera, “People with Disabilities Are At Risk of Losing Medicaid Coverage Without the ACA Expansion” (San Francisco: Kaiser Family Foundation, 2020), available at
  70. Jesse Cross-Call and Matt Broaddus, “States That Have Expanded Medicaid Are Better Positioned to Address COVID-19 and Recession” (Washington: Center on Budget and Policy Priorities, 2020), available at
  71. Roosa Tikkanen and Melinda K. Abrams, “U.S. Health Care from a Global Perspective, 2019: Higher Spending, Worse Outcomes?” (New York: The Commonwealth Fund, 2020), available at
  72. U.S. Census Bureau, “Wealth, Asset Ownership, and Debt of Households Detailed Tables: 2017,” available at (last accessed February 2022).
  73. Ibid.
  74. Nanette Goodman, Michael Morris, and Kelvin Boston, “Financial Inequality: Disability, Race and Poverty in America” (Washington: National Disability Institute, 2019), available at
  75. Ibid.
  76. Kaiser Family Foundation, “The Real Cost of Health Care: Interactive Calculator Estimates Both Direct and Hidden Household Spending,” Press release, February 21, 2019, available at
  77. Taylor, “Racism, Inequality, and Health Care for African Americans.”
  78. Kaiser Family Foundation, “Women’s Coverage, Access, and Affordability: Key Findings from the 2017 Kaiser Women’s Health Survey” (San Francisco: 2018), available at
  79. Sara R. Collins and others, “An Early Look at the Potential Implications of the COVID-19 Pandemic for Health Insurance Coverage” (New York: The Commonwealth Fund, 2020), available at
  80. Emily Gee and Thomas Waldrop, “Policies To Improve Health Insurance Coverage as America Recovers From COVID-19” (Washington: Center for American Progress, 2021), available at
  81. Edward R. Berchick, Jessica C. Barnett, and Rachel D. Upton, “Health Insurance Coverage in the United States: 2018” (Washington: U.S. Census Bureau, 2019), available at
  82. Gee and Waldrop, “Policies To Improve Health Insurance Coverage as America Recovers From COVID-19.”
  83. Rebecca Cokley, “Coronavirus Proposals Leave the Disability Community Behind,” Center for American Progress, March 27, 2020, available at
  84. National Disability Institute, “COVID-19 Community Survey Results: Health and Financial Crisis,” April 26, 2020, available at
  85. Jaclyn Diaz, “Alaska’s Largest Hospital Says The Strain Of COVID Is Forcing It To Ration Care,” NPR, September 16, 2021, available at
  86. Joseph Shapiro, “One Man’s COVID-19 Death Raises The Worst Fears Of Many People With Disabilities,” NPR, July 31, 2020, available at
  87. Howard Gleckman, “Confronting the Growing Shortage of Care Workers For Older Adults,” Forbes, July 6, 2021, available at
  88. Centers for Disease Control and Prevention, “Risk for COVID-19 Infection, Hospitalization, and Death By Race/Ethnicity.”
  89. Danyelle Solomon, Connor Maxwell, and Abril Castro, “Systemic Inequality and Economic Opportunity” (Washington: Center for American Progress, 2019), available at
  90. Weller, “Systemic Racism Makes Covid-19 Much More Deadly For African-Americans.” 
  91. Alyssa Fowers and William Wan, “Depression and anxiety spike among black Americans after George Floyd’s death,” The Washington Post, June 12, 2020, available at
  92. Azza Altiraifi and Nicole Rapfogel, “Mental Health Care Was Severely Inequitable, Then Came the Coronavirus Crisis” (Washington: Center for American Progress, 2020), available at
  93. Miriam Delaney Heard, “Building Trust in the COVID Vaccine in Black Communities,” National Health Law Center, February 24, 2021, available at; National Academy for State Health Policy, “How States Collect, Report and Act on COVID-19 Race and Ethnicity Data,” available at (last assessed August 2021).
  94. Nambi Ndugga and others, “Latest Data on COVID-19 Vaccinations by Race/Ethnicity” (San Francisco: Kaiser Family Foundation, 2022), available at
  95. USAFacts, “US Coronavirus vaccine tracker,” available at (last accessed February 2022).
  96. MaryBeth Musumeci and Priya Chidambaram, “COVID-19 Vaccine Access for People with Disabilities.”
  97. Bill Chappell, “Uber And Lyft Will Give Free Rides To COVID-19 Vaccination Spots, White House Says,” NPR, May 11, 2021, available at
  98. Participant in the Center for American Progress’ Black Women’s Roundtable on Disability and Health Disparities, discussion via videoconference, June 24, 2021, on file with authors.
  99. Lauren Weber and Hannah Recht, “Covid Vaccine Websites Violate Disability Laws, Create Inequality for the Blind,” Kaiser Health News, February 25, 2021, available at .
  100. Pew Research Center, “Internet/Broadband Fact Sheet,” April 7, 2021, available at
  101. Laura Moy and Yael Cannon, “How to build more equitable vaccine distribution technology,” Brookings Institution, February 23, 2021, available at
  102. Bhaskar Chakravorti, “Black Americans are bearing the brunt of the pandemic. Here’s how to make the vaccine rollout more equitable,” CNN, February 23, 2021, available at
  103. Wendi C. Thomas and Hannah Grabenstein, “Memphis-Area Residents without Internet Must Wait Days for Vaccination Appointments, While Others Go to the Front of the Line,” ProPublica, January 15, 2021, available at
  104. Heather Watkins, roundtable participant, interview with authors via videoconference, June 24, 2021, on file with authors.
  105. Diana Boesch and Rebecca Cokley, “The Disability Community Needs Paid Family and Medical Leave,” Center for American Progress, October 27, 2020, available at
  106. Diana Boesch, “Quick Facts on Paid Family and Medical Leave,” Center for American Progress, February 5, 2021, available at
  107. Valerie Novack and Rebecca Cokley, “Investing in Home and Community-Based Care During the Coronavirus Pandemic and Future Disasters,” Center for American Progress, June 24, 2020, available at
  108. Social Determinants for Moms Act, H.R. 943, 117th Cong., 1st sess. (March 9, 2021), available at
  109. Rachel Garfield, Kendal Orgera, and Anthony Damico, “The Coverage Gap: Uninsured Poor Adults in States that Do Not Expand Medicaid” (San Francisco: Kaiser Family Foundation, 2021), available at
  110. Nicole Rapfogel and Maura Calsyn, “Public Options Will Improve Health Equity Across the Country” (Washington: Center for American Progress, 2021), available at .
  111. Maura Calsyn, “How States Can Build on the ACA To Improve Affordability and Lower Health Care Costs” (Washington: Center for American Progress, 2021), available at
  112. Nicole Rapfogel, “Building On the ACA To Reduce Health Insurance Disruptions” (Washington: Center for American Progress, 2021), available
  113. National Council on Disability, “Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities” (Washington: 2021), available at .
  114. Azza Altiraifi, “A Deadly Poverty Trap: Asset Limits in the Time of the Coronavirus,” Center for American Progress, April 7, 2020, available at
  115. Abigail Abrams, “How COVID-19 Long Haulers Could Change the U.S. Disability Benefits System,” Time, July 20, 2021, available at
  116. Black Women’s Roundtable, “Black Women in the U.S. 2021.”
  117. Osub Ahmed, “States Must Expand Telehealth To Improve Access to Sexual and Reproductive Health Care” (Washington: Center for American Progress, 2020), available at
  118. Nicole Rapfogel and Azza Altiraifi, “The Coronavirus Pandemic Has Exacerbated Existing Weaknesses in Telemental Health,” Center for American Progress, October 19, 2020, available at

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Megan Buckles

Former Senior Policy Analyst

Mia Ives-Rublee

Director, Disability Justice Initiative

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This series examines the impacts of structural racism, sexism, and ableism on the education, health outcomes, and economic security of Black women and girls with disabilities in the United States.


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