CW: Ableism & Eugenics
Federal officials are proposing new regulations that will bar medical professionals from discriminating against people with disabilities and would establish new accessibility standards in doctor’s offices.
The Department of Health and Human Services announced Thursday that it is proposing a rule that “updates, clarifies, and strengthens” regulations connected to Section 504 of the Rehabilitation Act, nearly 50 years after the law was created.
Specifically, the rule would bar medical treatment decisions from being based on biases or stereotypes about disabilities. Likewise, judgements about the value of an individual’s life or their burden on others could not factor into treatment decisions related to organ transplants, life-sustaining care, crisis standards of care or otherwise.
The COVID-19 pandemic has shown that disabled people are often treated poorly and discriminated against regarding medical care. According to a report released in October 2021 by the National Council on Disability, one-third of COVID-19 deaths in the United States occurred in facilities for the elderly and disabled between the start of the pandemic and March 2021.
Sarah McSweeney, who died in 2020, had Cerebral Palsy. The doctors were perplexed by a document the staff members from McSweeney’s group home had with them. It was a legal document outlining the medical care that this disabled woman, who was unable to speak for herself, desired.
The staff didn’t understand why it wasn’t a DNR. A do-not-resuscitate order is a legal document issued by a doctor stating that you do not wish to be resuscitated in an emergency. Because of her disabilities, the staff thought her life wasn’t worth saving.
The proposal also establishes enforceable standards for accessible medical diagnostic equipment and would require certain medical providers to have at least one accessible exam table and one accessible weight scale within two years of the rule being finalized.
The rule would apply to federally funded programs and activities, as well as those carried out by government agencies. It requires that services for individuals with disabilities be delivered in the most integrated environment possible, establishes criteria for web, mobile, and kiosk accessibility for health-related programs, and prohibits the discriminatory use of value assessment methods.
Additionally, the proposal would ensure that individuals with disabilities are not discriminated against in child welfare programs such as parent-child visitation, reunification services, child removals and placement, guardianship, parenting skills programs, foster and adoptive parent assessments, and other services.
Before it can be completed, the proposed rule will be open for public comment for 60 days.
Disabled people’s lives are valuable. We deserve to be treated with respect and dignity in all healthcare settings. It is long overdue that healthcare settings are more accessible.
Sources:
Diament, Michelle. “Biden Administration Proposes Rule to Curb Disability Discrimination in Health Care.” Disability Scoop, Disability Scoop 8 Sept. 2023, http://www.disabilityscoop.com/2023/09/08/biden-administration-proposes-rule-to-curb-disability-discrimination-in-health-care/30537/.
Garcia, Eric. “Biden Is Wrong. the Pandemic Isn’t over for Disabled Americans.” MSNBC, NBCUniversal News Group, 23 Sept. 2022, https://www.msnbc.com/opinion/msnbc-opinion/biden-wrong-pandemic-isn-t-over-disabled-americans-n1299051.
Shapiro, Joseph. “As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access? .” NPR, NPR, 14 Dec. 2020, https://www.npr.org/2020/12/14/945056176/as-hospitals-fear-being-overwhelmed-by-covid-19-do-the-disabled-get-the-same-acc.