July 20, 2020
In states that are hard hit by COVID-19 surges, older adults, people with disabilities, and people of color face a real risk of being denied life-saving medical care during the pandemic. This week, individuals represented by a coalition of state and national disability and civil rights advocacy groups filed complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) challenging the crisis standard of care plans in Arizona and Texas, two states hit hard by the COVID-19 pandemic.
The COVID-19 situation in both states is dire. Arizona has the highest number of confirmed COVID-19 cases per million residents in the world. In Texas, COVID-19 cases continue to set new records each day, with Dallas County recently reporting over 1,000 new cases for six days in a row. Based on the unprecedented spread of the virus, medical officials in both states have warned that some hospitals have reached capacity and the crisis plans have been activated. While decision-making in these scenarios is bound to be challenging, it is unacceptable and illegal for decision-making guidelines to be discriminatory.
The complaints allege that, among other things, the plans categorically exclude people with certain disabilities from life-saving treatment; fail to modify policies and procedures that discriminate against people with disabilities, including no-visitor policies and the use of assessment instruments; and fail to prohibit treatment decisions that are based on discriminatory assumptions regarding future medical resources the patient may require—all of which impact older adults. In addition, denying life-saving treatment to people who have certain illnesses or underlying conditions, as well as those with life-expectancy of less than five years will inevitably have a further discriminatory impact on individuals from Black, Native, and Latinx communities, who are more likely to have certain underlying conditions and a shorter life expectancy than white individuals.
These communities also face a disproportionate risk of COVID-19 infection and hospitalization, putting them at greater risk of being subject to these discriminatory plans. As such, the plans reinforce current and historical inequities in access to health care, and risk importing quality of life criteria and unconscious bias into the triage process, which will inevitably lead to inconsistent and subjective decision-making, higher rates of clinical error, and discriminatory allocation of care.
Since Texas has never adopted statewide crisis standards, despite repeated requests from the disability community, the Texas complaint challenges the North Texas Mass Critical Care Guidelines issued by the North Central Trauma Regional Advisory Council. This Regional Advisory Council is responsible for overseeing the provision of emergency medical services for 8 million Texans, or 30% of the state. The Arizona complaint challenges the statewide Crisis Standard of Care guidelines along with the recently-issued COVID-19 Addendum.
State partners, working with national groups—Justice in Aging, The Arc, the Center for Public Representation, Disability Rights Education and Defense Fund, the Autistic Self Advocacy Network, and the Bazelon Center for Mental Health Law—argue in the complaints that the crisis care plans place communities at risk of substantial and imminent harm by being denied basic and emergency treatment during a pandemic.
“The Texas and Arizona Crisis Care Standards are biased against older adults. They reach outside of relevant clinical considerations of recovery and health, and in doing so systemically devalue the lives of older adults, especially older adults of color”, said Regan Bailey, Litigation Director at Justice in Aging. “Nor do the standards take into account older adults’ impact on and contributions to their communities and the people who love them. These standards introduce subjective notions of whose life is more valuable in ways that will always cut against older adults.”
“Right now, given the limited supply of hospital beds and life-saving equipment, the medical rationing plans in Arizona and Texas could result in a death sentence for some persons with disabilities, older adults, and people of color. They are clearly discriminatory in light of OCR’s recent guidance and resolutions,” said Steven Schwartz, Legal Director of the Center for Public Representation. “We call on OCR to take urgent action to protect the lives of people with disabilities, whose lives are at imminent risk as these discriminatory plans are being activated.”
Justice in Aging and California advocates successfully worked with the state of California to create guidelines that don’t discriminate against older adults and people with disabilities. Advocates should use these guidelines as a model in their own states. The national disability organizations have also created resources at Center for Public Representation and The Arc to assist stakeholders across the country in evaluating and advocating for non-discriminatory medical rationing plans.
For more information, contact
Vanessa Barrington, Justice in Aging