The Trump administration warned states and health care providers not to discriminate against people with disabilities as Coronavirus spreads. In a bulletin issued March 28th, the U.S. Department of Health and Human Services’ Office for Civil Rights said that the Americans with Disabilities Act, Section 504 of the Rehabilitation Act and other laws prohibiting discrimination in federally-funded health programs remain in effect.
“As such, persons 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. 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.”Civil Rights, HIPAA, and the Coronavirus Disease 2019, Office for Civil Rights – U.S. Depart of Health and Human Services (HHS)
Fight for Your Rights
This knowledge is critical if you find yourself advocating for the continuing care of your loved one and to protect s/he against discrimination. With increasing focus on a doctor’s prerogative to ration care to patients with the greatest chance of survival, you need to be armed with every argument at your disposal to fight for equal care. My experience is that the last thing most doctors want to do is ration care but the situation is so severe in some geographies that they may have no choice. When asked what people should do to be prepared for a hospital stay, a New York City doctor said the number one thing is to be prepared for end-of-life discussions.
Most states have some form of Office of Health Care Advocate that may help educate you on rules in your geography and, in some cases, directly advocate for your needs. A Google search for “disability covid-19” returns many country and state-specific resources. Look at your particular situation, learn about your rights, gather any paperwork you need such as a living will, etc., and be prepared to make hard decisions and fight if needed.
Clearly, this is a difficult topic that can’t be adequately covered in a single post, so please leave me a comment or send me an email about your concerns and I’ll try to recommend resources to assist you.