The federal Department of Health and Human Services (HHS) is proposing important and beneficial new regulations under Section 504 to clarify how the law prohibits healthcare discrimination based on disability. The notice of proposed regulations from the federal government is full of examples of disability discrimination by healthcare providers. For example, based on a report from the National Council on Disability, the notice states:
In its report, Medical Futility and Disability Bias, NCD discusses the example of Terrie Lincoln who, at age 19, was in an automobile accident that severed her spinal cord and caused her to become quadriplegic. The report describes that when Terrie “was in the hospital just following her accident, Terrie’s doctors repeatedly tried to influence her family to `pull the plug,’ stating that Terrie was a `vegetable’ and, even if she were to regain consciousness, would have no quality of life.” When Terrie did regain consciousness, she was pressured by her doctors to forego additional medical treatment that would extend her life due to judgments that life with the disability of quadriplegia was not worth living. This would be a violation of the proposed regulation….Terrie persisted, later coming off the ventilator, earning degrees in social work and public administration, and becoming a disability rights advocate and mother.
The notice requests public comments on the proposed regulations and includes specific questions concerning examples of healthcare discrimination. Public comments can be submitted HERE.
One of the topic areas and questions is:
84.56(c)(1) Professional Judgment in Treatment…
Medical Treatment Question 3: The Department seeks comment, including from health care professionals and people with disabilities, on the examples described in this section, whether additional examples are needed, and on the appropriate balance between prohibiting discriminatory conduct and ensuring legitimate professional judgments.
A very helpful explanation of the proposed rule and how to submit a public comment or personal story of healthcare discrimination is provided by the Autistic Self Advocacy Network HERE.
1 thought on “HHS Requests Public Comments and Stories of Discrimination in Healthcare”
My name is Kate and while I’m a nurse I am also a patient. About six months ago my husband and I received an infertility diagnosis. We got on the fertility clinic’s wait list and waited anxiously for our appointment. Our appointment went mostly well until we got to what medications I’m taking and there was a noticeable silence broken by the doctor saying that I would need a letter from my psychiatrist before I could begin treatment. I should not need my psychiatrists permission to begin a family. Fertile women don’t need psychiatric evaluations before they get pregnant. My father was an alcoholic when I was conceived but no doctor tried to argue he shouldn’t become a parent. Even my psychiatrist has never heard of such a thing.
My name is Kate and while I’m a nurse I am also a patient. About six months ago my husband and I received an infertility diagnosis. We got on the fertility clinic’s wait list and waited anxiously for our appointment. Our appointment went mostly well until we got to what medications I’m taking and there was a noticeable silence broken by the doctor saying that I would need a letter from my psychiatrist before I could begin treatment. I should not need my psychiatrists permission to begin a family. Fertile women don’t need psychiatric evaluations before they get pregnant. My father was an alcoholic when I was conceived but no doctor tried to argue he shouldn’t become a parent. Even my psychiatrist has never heard of such a thing.