NCD letter to National Governors Association on COVID-19

Skip to Page Content

April 9, 2020

The Honorable Larry Hogan
Governor
State of Maryland
Chair
National Governors Association
444 North Capitol St NW #267
Washington, DC  20001

The Honorable Andrew Cuomo
Governor
State of New York
Vice Chair
National Governors Association
444 North Capitol St NW #267
Washington, DC  20001

Dear Governors Hogan and Cuomo:

On behalf of the National Council on Disability (NCD), an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy, I write on a matter of urgency regarding access to medical care for people with disabilities who contract COVID-19, and to urge you to remind governors that their state crisis response protocols must adhere to non-discrimination laws.

As a result of the rapid progression of the COVID-19 pandemic, states are quickly developing and revising crisis care protocols – many that include guidelines on how to ration medical care should the number of patients overwhelm their medical systems. There has been an increasing amount of media attention on the current and proposed plans of several states which clearly target people with disabilities and chronic illness as patients who will not receive necessary healthcare if rationing becomes necessary.[1]

People with disabilities and chronic health conditions are particularly vulnerable during this crisis: they are vulnerable to catching the virus; likely to experience the most severe symptoms; and at the same time, they are most likely to be subjected to healthcare discrimination through limiting and denying necessary care. NCD recently released a series of reports demonstrating that, even in the absence of a crisis, disability bias continues to impact medical decision making, leading to a deadly form of discrimination.[2] The research in these reports attribute this discrimination to strongly ingrained stereotypes and the belief that disabled lives have less value. This is certainly being borne out by many of the state crisis care protocols that we have examined which explicitly allow healthcare providers to deny care based on disability. State protocols allowing medical care rationing for people with disabilities have already resulted in lawsuits and complaints of disability discrimination filed with the U.S. Department of Health and Human Services, Office for Civil Rights.[3]

As a result of the advice of NCD, national disability organizations, and Congress, HHS OCR recently released a bulletin on the civil rights responsibilities of healthcare providers during the COVID-19 pandemic – detailing responsibilities for non-discrimination under the Americans with Disabilities Act and other federal laws. HHS  makes clear that treatment decisions must be made consistent with federal law - based on an individualized assessment of the patient based on objective medical evidence – not influenced by stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities.[4] NCD strongly encourages NGA to distribute this bulletin to every governor and draw attention to it across your network.

We were heartened to read the recent statements of Governor Wolf of Pennsylvania and Governor Newsom of California – each committing to nondiscrimination in COVID-19 medical care. We also understand that NGA is holding regular calls for states to hear from subject-matter experts, learn from their peers in other states, and discuss common challenges related to the coronavirus. This is an important tool for information sharing and we encourage you to connect with NCD or the subject matter experts at national disability rights and policy organizations, such as the National Disability Rights Network and the National Council on Independent Living -  who can join a call and provide more information on ensuring that people with disabilities receive necessary medical care for COVID-19 consistent with federal law.

Every life is valuable. In this unprecedented crisis, it is crucial that each state respond to COVID-19, not only by supporting its medical professionals' abilities to treat, but by committing to protect the civil rights of its residents with disabilities. I can be reached at nromano@ncd.gov and Lisa Grubb, Executive Director is available at lgrubb@ncd.gov to facilitate an opportunity for us to discuss with you or your staff.

If you have any questions regarding this recommendation or if you need additional information, please contact Joan Durocher, NCD’s General Counsel and Director of Policy, at jdurocher@ncd.gov.

Respectfully,

Neil Romano
Chairman

 

 




[1] Ezekiel J. Emanuel, James Phillips, and Govind Persad, “Opinion: How the Coronavirus May Force Doctors to Decide Who Can Live and Who Dies,” (March 12, 2020).  https://www.nytimes.com/2020/03/12/opinion/coronavirus-hospital-shortage.html; Ariana Eunjung Cha, "Spiking U.S. Coronavirus Cases Could Force Rationing Decisions Similar to Those Made in Italy, China,” (March 15, 2020). https://www.washingtonpost.com/health/2020/03/15/coronavirus-rationing-us/

[2] National Council on Disability, Bioethics and Disability report series. https://ncd.gov/publications/2019/bioethics-report-series

[3] “Ventilator Priority and Rationing for Coronavirus,” (March 31, 2020), https://www.medicinenet.com/script/main/art.asp?articlekey=229634