NDSC Statement on Discriminatory Medical Treatment Rationing During COVID-19 Crisis

The National Down Syndrome Congress (NDSC), the country’s oldest national organization serving people with Down syndrome, their families, and the professionals who work with them. NDSC advocates for all people with Down syndrome to be treated equally and works to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. We realize that during this COVID-19 public health crisis that the need for intensive medical care may exceed the capacity and resources of our healthcare system. We also recognize that medical providers may be forced to make decisions regarding who should receive care and how much care an individual will receive. We want to emphasize that making this decision on the basis of disability is in violation of federal disability nondiscrimination laws, such as the Americans with Disabilities Act, Section 504 of the Rehabilitation Act and Section 1557 of the Affordable Care Act. To be clear, legally, a provider cannot:

  • deny or limit care to disabled people because of their disability;
  • deny or limit care based on the fact that a disabled person may have a lower likelihood of survival or require more intensive care;
  • rely on “quality of life” judgments when deciding whether to deny or limit COVID-19 treatment; or
  • deny or limit treatment to a person with a disability because they may require reasonable accommodations.

 

For more details about these legal prohibitions on discrimination, please see a legal brief prepared by the Disability Rights Education & Defense Fund (DREDF).

We are pleased to share that, on March 28, 2020, the Office of Civil Rights (OCR) from the US Department of Health & Human Services issued guidance affirming that rationing of medical care based on disability is illegal.

 

NDSC’s Policy & Advocacy team has been coordinating with our allies to stop this insidious type of discrimination in the following ways:

  • NDSC participates in daily calls with our coalition partners, as well as Hill staff, regarding the impact of the COVID-19 pandemic on people with disabilities. NDSC’s Policy team is aggressively advocating for resources and relief across all areas in federal COVID-19 legislation packages.
  • NDSC is in regular contact with local Down syndrome organizations and advocates around the country about this issue, among other priorities relating to COVID-19. If you become aware of any instances of care rationing or discrimination based upon disability, please contact Heather Sachs, NDSC Policy & Advocacy Director, at heather@ndsccenter.org.
  • Through the Consortium for Citizens with Disabilities (CCD), of which NDSC is an active member and task force co-chair, NDSC supported a recent letter sent to the Office of Civil Rights US Department of Health & Human Services (HHS) asking HHS to convey clearly—and to ensure—that any protocols that may be implemented for rationing treatment comply with the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973. We are appreciative of OCR for issuing positive guidance in response to this letter.
  • NDSC, in coalition with hundreds of other disability, civil rights, faith-based, and health advocacy organizations, signed onto a letter led by the American Association of People with Disabilities (AAPD) to Congressional leaders identifying our community’s main priorities including nondiscrimination in medical care.
  • Several disability rights organizations, with whom NDSC regularly collaborates, have filed complaints with the HHS Office of Civil Rights (OCR) regarding illegal disability discrimination in treatment rationing protocols being developed in response to the COVID-19 pandemic. To date, there have been complaints filed against the states of Washington, Alabama, Kansas, and Tennessee for discriminatory protocols regarding medical treatment and the rationing of ventilators.

NDSC will continue to remain vigilant and advocate for people with Down syndrome and other disabilities to be given the same treatment and opportunities as people without disabilities. Not only is medical rationing based on disability illegal discrimination, but it is also morally reprehensible.

You can join in NDSC’s advocacy efforts by: