When the National Council on Disability announced the release of the policy brief, Health Equity Framework for People with Disabilities, the brief set out the need for a concerted government effort to achieve health equity for people with disabilities. Noted was that responses to the COVID-19 pandemic showed bias against people with disabilities that negatively impacted their healthcare treatment decisions. Triage treatment decisions in some states were expressly allowed to be based on the presence of certain disabilities.
Unfortunately, bias exists at the very top of policy makers who make decisions on addressing the COVID pandemic. When Dr. Rochelle Walensky, accomplished infectious disease scientist and Director of the Centers for Disease Control and Prevention, was interviewed on Good Morning America in January, she discussed a research study citing that over 75% of vaccinated people who died from covid had four or more co-occurring conditions. Despite having media consultants and having made clear statements about health equity, her unedited interview remarks stated that people with disabilities were “unwell” to begin with and that the research study findings were “good news” in the context of vaccinations for COVID.
The disability community responded with a public statement signed by 135 disability-related organizations. A blog was also published in Anti-racism Daily in response to Dr. Walensky’s comments. Both the blog and the letter noted that people with four or more chronic conditions are marginalized groups, people with disabilities and disproportionately people of color.
Disability organizations such as the Partnership for Inclusive Disaster Strategies, the World Institute on Disability, and the National Council on Independent Living issued a call to action about the biased language and denial of civil rights protections from governmental and public health organizations, contributing to the deaths of many people with disabilities. Black, Brown, and Indigenous peoples along with other underrepresented groups bear the greatest burdens of this neglect, highlighting systemic inequities that keep people from fulfilling all aspects of healthy professional and social living..
The bias extends to health care providers. According to Health Affairs, the perceptions and attitudes of physicians toward persons with disabilities are still incredibly biased. While 82.4 percent of physicians reported that the quality of life for persons with significant disabilities was worse, only 40.7 percent felt very confident about their ability to provide the same quality of care given to people without disabilities. Furthermore, only 56.5 percent of physicians strongly agreed that they welcome persons with disabilities in their practices.
There is widespread news coverage citing egregious examples of death related to denial of care of people with disabilities.
With the lack of mitigation strategies (other than boosters) to reduce the risk of contracting COVID and becoming seriously ill, some people with disabilities are afraid to leave home and have put off needed medical care. Because the covid crisis continues to be politically divisive, Dr. Walensky’s interview was referenced by anti-vaccine and anti-mask supporters as an example of how the CDC may be overcounting COVID deaths while the actual causes of death could be co-morbidities. Despite disagreements about COVID, there appears to be consensus from both sides of the COVID divide to minimize deaths of people with disabilities.
To address the ableist rhetoric towards disability, healthcare leaders should follow the recommendations that disability advocates shared with Dr. Walensky for the adoption of disability-inclusive policies. The recommendations include regular meetings with stakeholders from the disability community and stakeholders who support inclusive policies that center people with disabilities and other communities disproportionately impacted by COVID. Furthermore, health care education and accreditation bodies need to enforce standards in the education and training of health care providers. In the Health Equity Framework for People with Disabilities, mandates to do so under federal law are recommended.
Other countries are also modeling more inclusive and comprehensive solutions focused on disability. One example would be the United Nations disability policy developed during covid. This policy calls for a disability-inclusive response to COVID using a human rights approach and including persons with disabilities as partners in planning and implementation of strategies. A Disability Area Partnership was adopted by the Parliament in Denmark that agrees to create security while battling dissatisfaction and loneliness for vulnerable groups while reopening. In Canada, the government established a COVID-19 Disability Advisory Group (CDAG). The CDAG advises based on the lived experiences of persons with disabilities during the pandemic, considering challenges and strategies to reduce the disproportional impact of covid on the disability community.
The government and the entire American healthcare system can make stronger efforts to acknowledge the health disparities of covid on the disability community by following the models provided by other nations.In doing so, oversights can be prevented that minimize the deaths of people with disabilities while protecting their health during the current pandemic and in possible national health emergencies in the future.
Sarah Ailey is Professor of Nursing at Rush University and a Public Voices Fellow of the OpEd Project. She is the Principal Investigator for the PATH-PWIDD (Partnering to Transform Health Outcomes with Persons with Intellectual and Developmental Disabilities) Program funded by the Administration for Community Living, and the President of the Alliance for Disability in Health Care Education. She is also the mother of an adult son with intellectual disabilities.