NCD statement in support of President’s Executive Order on protecting vulnerable newborns and infants

WASHINGTON–The following is a statement from National Council on Disability (NCD) in support of the President’s Executive Order on protecting vulnerable newborns and infant children, calling for the Department of Health and Human Services’ (HHS) Office of Civil Rights (OCR) to commence rulemaking:

NCD applauds the President’s Executive Order of Sept. 25, 2020, on protecting vulnerable newborns and infants from medical discrimination. We agree that every infant born alive has the same dignity and the same rights as every other individual and is entitled to the same protections under Federal law.

The need for this Executive Order is abundantly clear to NCD. The life and death consequences of the devaluation of life with a disability is the prominent theme in NCD’s recent bioethics reports. Our reports highlight that despite federal protections, medical treatment decisions about patients with disabilities are frequently influenced by the assumption that a life with a disability is not a life worth living – or of saving.

For too long, such biased assumptions have resulted in physicians’ unwillingness to provide or continue life-sustaining care to a patient who has a disability classified as medically “severe.” This is true no matter the age of the patient - physicians frequently predict a poor quality of life for children born with a disability and medical discrimination results by withholding medical treatment or nourishment based on such predictions.

NCD has allied with the Department of Health and Human Services’ Office of Civil Rights during the past year on the common goal of nondiscriminatory access to healthcare for people with disabilities, working to ensure that medical care is not denied based on, or influenced by, value judgments about quality of life. We commend OCR for its guidance of March 28th on medical provider’s obligations for nondiscrimination and for its enforcement actions to address healthcare discrimination against people with disabilities in the COVID-19 era.

This Executive Order allows HHS to take further action to ensure nondiscrimination in healthcare by directing HHS to issue regulations or guidance necessary for its implementation.

Today, NCD calls on HHS OCR to quickly respond to this directive and issue a proposed rule to implement the Executive Order and protect newborns and infants with disabilities from medical discrimination.