Activists say Pennsylvania’s critical-care guidelines discriminate against the disabled for COVID-19 care
Advocates object to the heavy weight a Pennsylvania Department of Health draft has given to life expectancy and quality of life as key factors in who gets care.
Disability Rights Pennsylvania has filed a federal civil rights complaint alleging that the state’s draft of the medical treatment rationing plan for prioritizing who gets critical care during the COVID-19 pandemic discriminates against people with disabilities.
The advocacy group, whose official role is to ensure that Pennsylvania policies do not violate the rights of people with disabilities, objects to the heavy weight a state Department of Health draft has given to life expectancy and quality of life in deciding who gets care, said Kelly Darr, the group’s legal director.
“Studies show that determinations of life expectancy are the product of bias and are not really grounded in actually life expectancy,” Darr said Tuesday. “We want them to put in the triage guidelines cautions against those kinds of biases very specifically.”
A draft of the guidelines, dated March 22 and called “Interim Pennsylvania Crisis Standards of Care for Pandemic Guidelines,” was posted online by the New York Times.
Asked for comment on the Disability Rights Pennsylvania complaint filed Friday with the U.S. Department of Health & Human Services’ Office for Civil Rights, a state health department spokesperson said:
“The interim guidance that was sent to hospitals was a draft that was not meant for further distribution. We will be working with these and additional stakeholders on a final document.”
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An official at the Pennsylvania Department of Human Services, which oversees services for those with intellectual and developmental disabilities, on Tuesday acknowledged the potential of health-care professionals not grasping the quality of life that disabled people enjoy.
“We want to be sure that the guidelines eliminate the bias,” said Kristen Ahrens, deputy secretary for the Office of Developmental Programs.
The interim document proposed a point system with higher scores landing individuals farther down the priority list for treatment. The proposal said people receive points if they have conditions such as Alzheimer’s, heart failure, or other major illnesses associated with decreased long-term survival.
State officials on Friday gave Disability Rights Pennsylvania a revision of the guidelines. Darr said in a letter Tuesday to state officials that the guidelines still violated federal law, which requires care decisions to be “based on individualized determinations using objective evidence rather than assumptions, stereotypes, and myths about people with disabilities."
Asked for an alternative, Darr acknowledged that there are no good answers. “This is a horrific question to try to figure out,” she said.
As a preferable model, she cited Arizona’s policy, which requires only an assessment of a patient’s response to COVID-19 treatment in a a hospital.
“You don’t get docked additional points because you walk in the door with a preexisting condition,” Darr said.