by Elizabeth Pendo
More than 56 million Americans—nearly one in five people—experienced some form of disability as of the 2010 U.S. Census, a number expected to increase as the population ages. Despite forming a significant and growing share of the population, people with disabilities, who can be particularly vulnerable to COVID-19, experience significant inequities in health and health care. One of the reasons for these inequities is persistent disability discrimination and negative bias in the provision of medical treatment. Although bias can be explicit or implicit, studies have consistently demonstrated that health care providers hold negative views of people with disabilities and fail to “fully appreciate the value and quality of life with a disability.” A series of reports from the National Council on Disability explores how people with disabilities are impacted by bias in critical health care issues including organ transplantation, medically assisted death, genetic testing, use of quality-adjusted life years (QALYs) in health insurance, and determinations of medical futility.
Governmental and private responses to the COVID-19 pandemic can compound these longstanding health inequalities. In particular, because the COVID-19 pandemic places tremendous strain on our health care system, states, health care facilities, and professional organizations are developing triage protocols to determine how to allocate critical health care resources, especially ventilators, when there is not enough capacity to treat all patients. Disability advocates and organizations have raised serious concerns about the impact of triage policies that exclude, disadvantage, or otherwise discriminate on the basis of disability. Examples of problematic provisions include:
· categorical exclusions based on disability, such as intellectual or developmental disability;
· explicit or implicit quality-of-life assessments;
· assumptions regarding long-term survival that disadvantage people with disabilities;
· failure to incorporate reasonable modifications in receiving treatment, including allowing for longer time on a ventilator;
· provisions authorizing reallocation of ventilators from chronic ventilator users to other patients;
· assumptions or concerns about the ability of people with intellectual and developmental disorders to comply with post-treatment protocols; and
· overall failure to require an individual assessment of each patient to avoid decisions based on diagnoses and stereotypes.
In creating and implementing triage policies, states, facilities and providers must consider three federal laws that prohibit disability-based discrimination in health care:
· Section 1557 of the Patient Protection and Affordable Care Act (ACA), 42 U.S.C. § 18116
· Americans with Disabilities Act of 1990 (ADA), 42 U.S.C. § 12101
· Section 504 of the Rehabilitation Act of 1973, 29 U.S.C. § 794
Section 1557 of the ACA prohibits discrimination in health care by entities receiving federal financial assistance or administered by the U.S. Department of Health and Human Services (HHS) on the basis of race, color, national origin, sex, disability, and age. It amends Section 504 of the Rehabilitation Act, which applies to entities that receive federal funding. The ADA also prohibits discrimination on the basis of disability in public services, programs and activities (Title II), including state policies and health care services offered by public hospitals, and by places of public accommodation (Title III), which includes private physician’s offices and private hospitals. Although there are differences between these laws, they generally require: physical access to health care services and facilities, including accessible spaces and the removal of barriers; effective communication, including auxiliary aids and services such as the provision of sign language interpreters or materials in alternative formats; and reasonable modification of health care policies, practices, and procedures when necessary to accommodate individual needs. These laws also require that health care decisions be made based on an individualized, evidence-based assessment of the patient, rather than stereotypes or assumptions based on disability, age, or both.
On March 28, 2020, HHS, Office of Civil Rights (OCR), issued a bulletin on the application of Section 1557 of the ACA and Section 504 of the Rehabilitation Act to decisions concerning whether an individual is a candidate for health care treatment during the COVID-19 pandemic based on disability or age. The bulletin reaffirms that “[t]hese laws, like other civil rights statutes OCR enforces, remain in effect.” It also provides:
. . . [P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.
Finally, the bulletin emphasizes the requirements of Section 1557 and the Rehabilitation Act, including the obligation to ensure effective communication with individuals who are deaf, hard of hearing, blind, have low vision, or have speech disabilities, and to make reasonable modifications to address the needs of individuals with disabilities. Although not mentioned in the bulletin, these laws impose similar obligations to ensure effective communication with individuals with intellectual and developmental disabilities.
A large coalition of organizations with expertise in federal disability rights laws published detailed document and evaluation framework regarding application of the legal principles in the HHS bulletin and how states, health care institutions and health care providers can make reasonable modifications to policies and practices to avoid discrimination based on disability.
Disability advocacy organizations have also filed complaints with HHS Office of Civil Rights challenging allocation policies in Washington, Alabama, Kansas, Tennessee, Pennsylvania, Utah, New York, Oklahoma, North Carolina and Oregon based on Section 1557 of the ACA, the ADA, and Section 504 of the Rehabilitation Act. On April 8, 2020, HHS OCR reached an early resolution with Alabama after it removed its allegedly discriminatory ventilator triage guidelines. A few days later, it resolved the complaint against Pennsylvania after the state revised its policy to remove criteria that gave lower treatment priority to persons on the basis of particular disabilities, to require requiring individualized assessments based on objective medical evidence, and to ensure that stereotypes, assessments of quality of life, or judgments about a person’s “worth” are not used to make triage decisions.
Advocacy efforts will continue to ensure that access to lifesaving health care services should not be denied on the basis of disability during this public health crisis. These efforts here featured in an April 14, 2020 webinar, Disability Discrimination in the Rationing of Life Saving COVID Treatment: Who Gets Left Behind?, jointly sponsored by the ABA Section on Civil Rights and Social Justice and the ABA Commission on Disability Rights, available at https://www.americanbar.org/groups/crsj/events_cle/program-archive/disability-discrimination-in-the-rationing-of-life-saving-covid-/.
Additional resources:
You can find legal and ethical analyses, an updated list of complaints filed with HHS OCR, letters from advocacy organizations to federal and state officials, and media coverage at
https://www.centerforpublicrep.org/covid-19-medical-rationing/.
HHS OCR documents are available at https://www.hhs.gov/hipaa/for-professionals/special-topics/hipaa-covid19/index.html.
Finally, you can find self-advocacy resources at The Disability Rights Education and Defense Fund, COVID-19 Advocacy and Resources page, available at https://dredf.org/covid-19-advocacy-and-resources/, the American Association on Health and Disability, Resources for People with Disabilities on COVID-19 page, available at https://www.aahd.us/covid-19/
and #NoBodyIsDisposable, Know Your Rights Guide, available at https://nobodyisdisposable.org/.
Elizabeth Pendo, Joseph J. Simeone Professor of Law at Saint Louis University School of Law, is a specialist in disability law, bioethics and the law, and health law and policy. Her work advocates for greater access to adequate health care, health insurance, work opportunities, integration in the community, and full participation in society for people with disabilities.