April 2020 Newsletter

Apr 1, 2020 | Newsletter | 0 comments

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I really appreciate the many followers of Orange Socks. One of them sent me an article from the Mirror, a newspaper in England. The headline reads, “Coronavirus: People with Down’s [sic] syndrome could be left to die to ‘save’ medical supplies.” I thought, “how could you England?” “How could you be so barbaric, and blatantly discriminatory.” As I read further, I was horrified to discover that the article’s author was citing officials in the U.S.A. “What?” Apparently, the State of Alabama, in an effort to ration ventilators, has taken the position that people with “severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” And that persons with “profound mental retardation, moderate to severe dementia, or catastrophic neurological complications such as persistent vegetative state are unlikely candidates for ventilator support.”
Then I thought, “how dare you Alabama,” only to discover that the States of Washington and Arizona have similar policies. Arizona’s policy states, “allocate resources to patients whose need is greater or whose prognosis is more likely to result in a positive outcome with limited resources.” That is less proscriptive but could result in the same discriminatory implementation.
As the Arizona Daily Star reports: “Between a person with cognitive difficulties and a person without them, who decides whose needs come first? Medical triage always forces hard decisions about who lives and dies. For instance, older people with shorter life expectancy or those with severe dementia are often deemed less deserving of scarce medical resources than younger, healthier individuals. The state plans make clear that the fate of those with intellectual disabilities is part of the wrenching debate.”
As expected, disability advocacy groups have filed complaints against the US Department of Health and Human Services asking for further clarification and guidance. These groups are seeking assurances that people with disabilities won’t be discriminated against when it comes to receiving emergency care.
I like the following statement by Ari Ne’eman, disability rights activist and author, in an op-ed piece in The New York Times: “This idea is both straightforward and concerning: Patients with disabilities may require more resources than the non-disabled. In a crisis, the non-disabled can be saved more efficiently. As a result, when doctors must choose between a disabled and a non-disabled patient with similarly urgent levels of need, the non-disabled patients should get priority, since they will recover more quickly, freeing up scarce resources. Adopting such an approach would be a mistake. Even in a crisis, authorities should not abandon nondiscrimination. By permitting clinicians to discriminate against those who require more resources, perhaps more lives would be saved. But the ranks of the survivors would look very different, biased toward those who lacked disabilities before the pandemic. Equity would have been sacrificed in the name of efficiency.”
I understand how difficult choices can be in these extraordinary circumstances. I just hope treatment isn’t denied for anyone now with the thought that someone “more deserving” might need it later.

Gerald Nebeker, Ph.D. Orange Socks President 


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