OCR Seeks Information on Addressing Disability Discrimination in Health Care and Child Welfare Contexts

Today, the Office for Civil Rights (OCR) at the U.S Department of Health and Human Services (HHS) announces the issuance of a Request for Information (RFI) on disability discrimination in health care and child welfare contexts. In carrying out its enforcement activities under Section 504, OCR has become aware that significant discrimination on the basis of disability may still exist in the nation’s health care and child welfare systems. OCR has received reports of discriminatory practices from researchers, advocates, organizations of persons with disabilities and the agency’s own enforcement, monitoring, and technical assistance activities.

OCR has undertaken a review of its existing disability nondiscrimination regulations, and is considering revising the regulations to address important and pressing issues that have been raised in the health care and child welfare contexts in recent years. Because of the extensive reach of the issues under consideration, OCR feels it is appropriate to solicit public comment on the key issues that any future updates to such regulations would or should address.

To that end, OCR seeks information on disability discrimination with respect to:

• Organ transplantation, including discrimination arising from the denial of reasonable modifications for individuals with disabilities seeking transplantation;
• Life-saving or life-sustaining care, including from undue influence or steering persons with disabilities toward the withdrawal of life-saving or life-sustaining care as well as denials of care emerging from medical futility determinations;
• Suicide prevention and treatment programs, including from undue influence or steering persons with disabilities toward the provision of life-ending services on the basis of disability;
• Crisis Standards of Care at the state and provider level;
• Health care value assessment methodologies, including by use of measures that assign percentage values to the lives of individuals or groups of individuals with disabilities due to their disability or judgments regarding quality or relative worth of life.
• Child welfare, including discrimination against parents and prospective parents with disabilities involved with the child welfare system; and
• Availability of auxiliary aids and accessible medical equipment.

The RFI seeks information on the types of discrimination that arise in these areas, as well as on the costs and administrative burdens associated with potential approaches to addressing such discrimination. OCR welcomes feedback from stakeholders and covered entities, including individuals with disabilities, family members, provider organizations, disability advocacy organizations, hospitals, medical providers, social workers, case workers, state and local child welfare agencies, and other participants in the child welfare system.

“We believe that persons with disabilities should not be discriminated against in vital health and human services including organ transplants, suicide prevention, the provision of life-saving care, and child welfare,” said Roger Severino, OCR Director. “We believe the American public agrees that persons with disabilities deserve full protection under law and we seek public input on achieving that goal with respect to the most consequential, life-altering contexts.”

Click here to view the RFI.*

For more information about how OCR is protecting civil rights, please visit https://www.hhs.gov/civil-rights/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.

* Individuals using assistive technology may not be able to fully access information in this document. For assistance, please contact the Office for Civil Rights at (800) 368‐1019 or (800) 537–7697 (TDD).