HHS Office for Civil Rights Publishes Proposed Rule Protecting Infants Born Alive from Discrimination on the Basis of Disability

OCR Publishes Proposed Rule Protecting Infants Born Alive from Discrimination on the Basis of Disability

On Friday, the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) issued a proposed rule promoting the fundamental human dignity of individuals with disabilities in the nation’s health care system and protecting the rights of parents seeking treatment for infants with disabilities. The proposed rule, “Special Responsibilities of Medicare Hospitals in Emergency Cases and Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities,” updates and clarifies existing Departmental regulations to conform with statutory protections against disability discrimination, and establishes that HHS’ regulations:

·         Protect patients, including infants born alive whose parents or guardians consent to treatment, from disability discrimination under Section 504 of the Rehabilitation Act (Section 504), which OCR enforces in Federally funded programs and activities;

·         Protect patients, including infants born alive, from unlawful denials of emergency screening or stabilizing treatment under the Emergency Medical Treatment and Labor Act (EMTALA), Section 1867 of the Social Security Act, as well as under hospital facility regulations, which the Centers for Medicare & Medicaid Services (CMS) enforces in covered hospitals;

·         Prohibit disability discrimination in the provision or withdrawal of life-saving or life-sustaining care;

·         Prohibit covered providers from basing certain life and death medical decisions on evaluations of the relative worth of the life of a patient with a disability, or on stereotypes or bias with respect to disability;

·         Prohibit covered providers from exerting undue influence or steering patients toward the withdrawal of life-saving or life-sustaining care, or toward the provision of life-ending services such as assisted suicide, mercy killing, or euthanasia, on the basis of disability; and

·         Require hospitals to inform a patient or the patient’s legal representative if and when a “do not resuscitate order” is entered for the patient without consent under facility regulations.

This proposed rule implements President Donald Trump’s Executive Order 13952 “Protecting Vulnerable Newborn and Infant Children.” The Executive Order notes that, despite Federal antidiscrimination law, some hospitals have refused life-saving or life-sustaining treatment to premature or disabled infants because they believe these infants may not survive, may have to live with long-term disabilities, or may have a quality-of-life deemed by some to be inadequate.

OCR has received multiple complaints alleging instances in which hospitals refused to treat premature infants on the basis of their age or disability despite parents’ requests for treatment. Likewise, in May 2020, CMS determined that an Ohio hospital had failed to meet its obligation under EMTALA to ensure medical screening examinations were performed on twin boys born prematurely (at 22 weeks gestation) in 2017.  The hospital did not send the twins to its neonatal intensive care unit and the brothers died within several hours after delivery.

The proposed rule also addresses reports on potentially discriminatory medical futility and quality of life judgments in medicine issued by the National Council on Disability, an independent Federal agency.

“When parents seek emergency treatment for their newborns, hospitals should never deny care on the belief that lives of infants with disabilities are not worthy of saving,” said Roger Severino, Director of OCR. “Americans across the political spectrum agree that people should be protected from disability discrimination in matters of life and death. This rule will promote the fundamental American principle that all lives are created with equal worth and dignity, no matter the circumstances of one’s birth,” added Director Severino.

OCR enforces a number of Federal antidiscrimination laws, including Section 504 of the Rehabilitation Act of 1973, Title II of the Americans with Disabilities Act, Title VI of the Civil Rights Act of 1964, the Age Discrimination Act of 1975, Section 1557 of the Patient Protection and Affordable Care Act.

OCR has actively enforced Federal civil rights laws during COVID-19 and has come to numerous resolutions regarding discrimination concerns during the pandemic, including providing technical assistance to states to ensure that Crisis Standards of Care (CSC) do not use discriminatory criteria, that patients have reasonable access to support persons in hospital settings during COVID-19, and that patients can receive safe religious visitations during COVID-19.  

To view the proposed rule and for more information about discrimination on the basis of disability, please visit www.hhs.gov/civil-rights/for-individuals/disability.

For more information about OCR’s enforcement of civil rights laws during COVID-19, please visit https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/index.html.

To learn more about non-discrimination on the basis of sex, race, color, national origin, age, and disability; conscience and religious freedom; and health information privacy laws, and to file a complaint with OCR, please visit www.hhs.gov/ocr.