Disabled People & Pandemic Priority

By: Aspen Miller

The COVID-19 pandemic struck fear in hearts across the globe. Further, fears became justified for disabled people as their needs and vulnerabilities were overlooked by state governments, policies, local communities, and neighbors.[1] Andrew Pulrang, a freelance writer with disabilities, shared, “From the very start of the pandemic, elderly, disabled, and chronically ill people heard the unusually clear message that we are less worthy of saving, that our lives are worth less.”[2] This bleak outlook of treatment during the pandemic defies the promises made to disabled people by the federal government.

One of the first federal acts preventing discrimination on the basis of disability was Section 504 of the Rehabilitation Act of 1973 which prohibited discrimination on the basis of disability in programs and activities that receive federal financial assistance and in federally conducted programs.[3] Later, the Americans with Disability Act (ADA) became active in 1990 protecting qualified individuals with disabilities from discrimination on the basis of disability in services, programs, and activities provided by state and local government entities.[4] However, as a surge of patients swarmed hospitals limiting resources, States began frantically adopting new crisis standards of care that discriminated against disabled people.[5]

A crisis standard of care is the protocol healthcare professionals follow when extreme circumstances resulting from emergencies, disasters, or pandemics arise.^[6] This protocol helps guide health care providers to objectively decide who is given care when resources are limited by adopting a utilitarian framework emphasized on “transparency, protection of the public, proportional restriction of individual liberty, and fair stewardship of resources.”^[7] Specifically, Washington and Alabama failed to protect disabled people.[8] Washington State considered a patient’s “baseline functional status” as a priority on whether or not to allocate resources. [9] Alabama’s emergency plan explicitly ordered hospitals not to offer mechanical ventilators to patients with severe or profound mental retardation, dementia, and traumatic brain injury.[10] In response, the Office of Civil Rights enforced the federal acts stating that persons with disabilities should not be denied medical care based on assessments of quality of life or judgements about a person’s relative “worth”.^[11]

Arizona, for the first time in its history, declared and authorized a crisis standard of care which allowed for a new triage protocol in response to COVID-19. ^[12] With the estimated population of adults with disabilities in Arizona being 946,481, there needs to be clear and specific protections.[13] Numerous advocacy and civil rights organizations mailed Governor Ducey a letter requesting changes and revisions to the crisis standards of care.[14] Specifically, to prohibit healthcare providers from making decision based on disabilities or perceived quality of life; provide necessary accommodations for communication, mobility, or other conditions; modify scoring instruments to accommodate specific disabilities that reflect an objective assessment of immediate short-term survival; and require regular base ventilator users (unrelated to COVID-19) be allowed to retain their ventilator and not be reallocated to other persons.[15] These revisions were made adhering to the message that, “medical rationing is not based on disability, age, race, ethnicity, or other categories prohibited by law.” ^[16] Despite the constant reactive, adjusting, and changing policies, disabled people still fear for their well being and health.

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[1] Andrew Pulrag, What I’ve Learned as a Disabled Person from the COVID-19 Pandemic, Forbes (Dec. 28, 2020) https://www.forbes.com/sites/andrewpulrang/2021/12/28/what-ive-learned-as-a-disabled-person-from-the-covid-19-pandemic/?sh=2ba7ad405e97; Jessica Contrera, People with Disabilities Desperately Need the Vaccine. But States Disagree on When They’ll Get It., Washington Post (Jan. 13, 2021) https://www.washingtonpost.com/dc-md-va/2021/01/13/disabled-coronavirus-vaccine-states/; Maavani Singh, ‘Essentially a death sentence’: California’s vaccine plan outraged disabled residents, The Guardian (Feb. 12, 2021) https://www.theguardian.com/us-news/2021/feb/12/california-coronavirus-vaccine-disabled-chronically-ill.

[2] Andrew Pulrag, What I’ve Learned as a Disabled Person from the COVID-19 Pandemic, Forbes (Dec. 28, 2020) https://www.forbes.com/sites/andrewpulrang/2021/12/28/what-ive-learned-as-a-disabled-person-from-the-covid-19-pandemic/?sh=2ba7ad405e97.

[3]United States Department of Labor, Disability, U.S. Dept. of Labor (Feb. 13, 2021) https://www.dol.gov/general/topic/discrimination/disabilitydisc#:~:text=Section%20504%20of%20the%20Rehabilitation,and%20in%20federally%20conducted%20programs.

[4] Id.

[5] Andy Jones, COVID-19 Raises Fears of Health Care Rationing, Disability Discrimination, Special Needs Answers (Apr. 1, 2020), https://specialneedsanswers.com/covid-19-raises-fears-of-health-care-rationing-disability-discrimination-17677.

[6] American Nurses Association, Crisis Standard of Care COVID-19 Pandemic, nursingworld.org https://www.nursingworld.org/~496044/globalassets/practiceandpolicy/work-environment/health–safety/coronavirus/crisis-standards-of-care.pdf.

[7] Id.

[8] Andy Jones, COVID-19 Raises Fears of Health Care Rationing, Disability Discrimination, Special Needs Answers (Apr. 1, 2020), https://specialneedsanswers.com/covid-19-raises-fears-of-health-care-rationing-disability-discrimination-17677.

[9] Id.

[10] Id.

[11] United States Department of Health & Human Services, OCR Issues Bulletin on Civil Rights Laws and HIPAA Flexibilities that Apply During the COVID-19 Emergency, U.S. Dept. of Health & Human Serv. (Mar. 28, 2020), https://www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on-civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19-emergency.html.

[12] Arizona Public Health Association, Arizona Authorized Crisis Standards of Care Patient Triage Protocol, AZPHA.org (July 6, 2020), http://www.azpha.org/wills-blog/2020/7/6/arizona-authorizesnbspcrisis-standards-of-carenbsppatient-triage-protocol (Last visited Feb. 13, 2021).

[13] Arizona Department of Health Services, COVID-19 Vaccination Plan, AZDHS, 22 Table 2S—Sub-Populations at increased Risk for Acquiring or Transmitting COVID-19 (3rd Ed., Jan. 15, 2021) https://www.azdhs.gov/documents/preparedness/epidemiology-disease-control/infectious-disease-epidemiology/novel-coronavirus/draft-covid19-vaccine-plan.pdf; Arizona Public Health Association, Arizona Authorized Crisis Standards of Care Patient Triage Protocol, AZPHA.org (July 6, 2020), http://www.azpha.org/wills-blog/2020/7/6/arizona-authorizesnbspcrisis-standards-of-carenbsppatient-triage-protocol (Last visited Feb. 13, 2021).

[14]Arizona Center for Disability Law, Crisis Standards of Care Must be Revised for At-Risk Populations during COVID-19 Crisis, ACDL (Jun. 30 2020), https://www.azdisabilitylaw.org/crisis-standards-of-care-must-be-revised-for-at-risk-populations-during-covid-19-crisis/.

[15] Id.

[16] Arizona Center for Disability Law, Letter to Governor Ducey, (Jun. 23, 2020) https://www.azdisabilitylaw.org/wp-content/uploads/2020/06/Letter-to-Gov-Ducey-Crisis-Standards-of-Care-Vulnerable-Arizonans.pdf (emphasis added).