Today, the Center for Public Representation, The Arc of the United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, Disability Rights Education & Defense Fund, and Professor Samuel Bagenstos released critical guidance to states and healthcare providers about how to avoid discriminating against people with disabilities if rationing access to COVID-19 treatment becomes necessary. The guidance is endorsed by 90 national disability and health advocacy organizations.

As COVID-19 cases increase and spread throughout the country, U.S. health officials are predicting that there will not be enough ventilators, medical equipment, hospital beds, and health care personnel to meet the demand of patients with the virus who require intensive treatment. Some states and cities are already experiencing a shortage, and health care professionals and state officials have begun developing and updating protocols to determine who will and will not have access to life-saving COVID-19 treatment in the event care rationing becomes necessary. Last week, advocates filed four complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (HHS-OCR) challenging the treatment rationing plans of Washington State, Alabama, Kansas, and Tennessee as discriminatory against people with disabilities in violation of federal disability rights laws and expressing grave concerns about the threat such plans pose to the lives of people with disabilities. The Consortium for Citizens with Disabilities, National Council on Disability, and members of Congress also sent letters to HHS-OCR, asking it to issue guidance about the application of disability rights laws to rationing plans.     

In response to these complaints and letters, HHS-OCR issued a Bulletin on March 28, 2020 entitled “Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19),” that makes clear that federal disability laws prevent people with disabilities from being “put at the end of the line for health services during emergencies” and “protect the equal dignity of every human life from ruthless utilitarianism.” The HHS-OCR Bulletin explains the obligations of states and health care providers to comply with federal disability rights laws in developing treatment rationing plans and administering care in the event of a shortage of medical equipment.  The guidance released today by advocates elaborates on the requirements in the HHS-OCR Bulletin and explains how states and health care providers can take concrete steps to modify policies and practices so that people with disabilities aren’t denied medical treatment based on their disability and stereotypes and biases about whether they are fit to live or die.

We are committed to ensuring that people with disabilities have equal access to life-saving treatment during the COVID-19 pandemic.  We expect that today’s guidance will assist states and medical providers in collaborating with disability stakeholders in their communities to develop fair, non-discriminatory policies. 

“During times of crisis, we see who we really are. The nationwide strain COVID-19 is putting on our health system puts to the test the legal and moral promises our country has made to treat people with disabilities in a way that is fair and just – that means providing life-saving treatment when it is needed and possible. We urge states and health care providers to take this guidance very seriously,  we expect nothing less and will continue to work aggressively to protect the inalienable civil rights of people with disabilities,” said Peter Berns, CEO, The Arc.

For more information on our guidance and advocacy regarding medical rationing, contact:

Center for Public Representation:  Cathy Costanzo, ccostanzo@cpr-ma.org or Alison Barkoff, abarkoff@cpr-us.org

The Arc of the United States:  Shira Wakschlag, wakschlag@thearc.org 

Bazelon Center for Mental Health Law:  Jennifer Mathis, jenniferm@bazelon.org

Autistic Self Advocacy Network:  Samantha Crane, scrane@autisticadvocacy.org

Disability Rights Education & Defense Fund:  Claudia Center, ccenter@dredf.org

Professor Samuel Bagenstos:  sbagen@gmail.com

Link to today’s guidance: https://thearc.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf