30 Organizations Urge HHS/OCR To Take New Steps To Prevent Healthcare Discrimination

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Not Dead Yet, with partners the Disability Rights Education & Defense Fund and the Patients Rights Action Fund, have assembled a total of 30 disability rights and racial justice organizations to support further regulatory action by the U.S. Department of Health and Human Services Office for Civil Rights. Specifically, the groups are urging the formal HHS release of the recently issued but not yet published Request for Information (RFI) on “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (PDF) (RIN: 0945-AA15).

The RFI details and seeks public input concerning disability discrimination in a number of healthcare areas, including life-sustaining care, organ transplant eligibility, Crisis Standards of Care, suicide prevention programs and services, the child welfare system, health care value assessment methodologies (e.g. QALYs), and auxiliary aids and accessible medical equipment.

In the introduction to the RFI, the Office for Civil Rights noted having received reports of discrimination from many sources, making particular note of the National Council on Disability’s Bioethics Series:

OCR has received reports of discriminatory practices from researchers, advocates, organizations of persons with disabilities, and through its own work. The National Council on Disability (“NCD”), an independent Federal agency, has issued studies examining disability discrimination in health and human services and has recommended that OCR provide guidance, regulations, and increased enforcement with respect to multiple aspects of these issues as they relate to health and human services programs and activities funded by the Department.

The advocates’ letter urging formal publication of the RFI is below (and on a separate page here). Interested persons can support this effort by emailing messages to Secretary@hhs.gov.

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