OCR Publishes Proposed Rule Defending Infants Born Alive from Discrimination on the Foundation of Incapacity

The U.S. Department of Health (HHS) today issued a regulatory proposal to promote the basic human dignity of people with disabilities in the national health system and protect the rights of parents seeking treatment for infants with disabilities. The proposed rule “Special Responsibilities of Medicare Hospitals in Emergency and Disability Discrimination in Programs or Activities for Critical Health and Human Service” updates and clarifies the department’s existing regulations to comply with statutory protection against disability discrimination, and states that HHS ‘regulations:

• Protect patients, including live born infants, whose parents or guardians consent to treatment, from discrimination based on disability under Section 504 of the Rehabilitation Act (Section 504) enforced by OCR in federally funded programs and activities.
• Protect patients, including live born infants, from unlawful denial of emergency screening or stabilization of treatment under the Emergency Medical Treatment and Labor Act (EMTALA), Section 1867 of the Social Security Act, as well as under the regulations of the hospital facilities that the centers operate for Medicare & Medicaid Services (CMS) prevails in covered hospitals;
• Prohibition of discrimination on the basis of disability in the provision or withdrawal of life saving or life sustaining care;
• Do not allow insured providers to base certain life and death medical decisions on assessments of the relative worth of a patient with a disability or on stereotypes or prejudices about disability.
• Prohibit insured providers from exercising undue influence or leading patients to withdraw life-saving or life-sustaining care or to provide lifelong services such as assisted suicide, pardon or euthanasia due to a disability. and
• Encourage hospitals to notify a patient or the patient’s legal representative if a “do not resuscitate order” is placed on the patient without consent under facility policy.

This proposed rule implements President Donald Trump’s Executive Order 13952 to protect vulnerable newborns and young children. The Executive Ordinance notes that, despite the federal anti-discrimination law, some hospitals have declined life-saving or life sustaining treatments for premature babies or disabled infants because they believe these infants may not survive, may have to live with long-term disabilities, or have a quality of life that some may have is considered insufficient.

OCR has received several complaints alleging that hospitals have refused to treat premature babies because of their age or disability, despite requests from parents for treatment. Likewise, in May 2020, CMS found that an Ohio hospital had failed to meet its EMTALA obligation to ensure that premature infants (22 weeks gestation) received medical checkups in 2017. The hospital did not send the twins to its neonatal intensive care unit and the brothers died within hours of delivery.

The proposed rule also addresses reports of 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 refuse care because they believe the lives of infants with disabilities are unsaved,” said Roger Severino, director of OCR. “Americans across the political spectrum agree that people should be protected from discrimination on grounds of disability on matters of life and death. This rule will promote the basic American principle that all lives, regardless of the circumstances of their birth, are created with equal worth and dignity, ”added Director Severino.

OCR enforces a number of federal anti-discrimination laws including Section 504 of the Rehabilitation Act 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 Patients Protection Act and affordable care.

OCR actively enforced federal civil rights laws during COVID-19 and passed numerous resolutions on discrimination issues during the pandemic, including providing technical assistance to states to ensure that the Crisis Standards of Care (CSC) do not use discriminatory criteria that patients have adequate access to support personnel in hospital settings during COVID-19 and that patients can receive safe religious visits during COVID-19.

For more information on Disability Discrimination, visit www.hhs.gov/civil-rights/for-individuals/disability.

For more information on enforcing civil rights laws through OCR during COVID-19, please visit https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/index.html.

Learn more about non-discrimination based on gender, race, color, national origin, age and disability; Conscience and freedom of religion; The laws on protecting the privacy of health information and filing a complaint with OCR can be found at www.hhs.gov/ocr.

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