By James W. Lytle
Katrina Jirik’s compelling post on the dangers posed to people with disabilities if care is rationed during the COVID-19 pandemic powerfully characterizes discriminatory allocation criteria as a form of “updated eugenic thought” that cannot be reconciled with the Americans with Disabilities Act and other anti-discrimination statutes.
I worry, however, that persons with disabilities and other vulnerable populations face an even graver threat: policymakers may unintentionally adopt policies that neglect to consider the unique needs of persons with disabilities and inadvertently place them at much greater risk.
In recent weeks, the debate over potential rationing strategies for addressing COVID-19 health needs has been intense in the medical journals, bioethics publications, and the mainstream press: Freakonomics Radio devoted an entire podcast to the topic. Disability rights organizations have initiated complaints against several states that threaten to place people with disabilities at the back of the line for ventilator allocation and ventilator-dependent individuals have become concerned that their ventilators may be confiscated. To its credit, the Department of Health and Human Services recently reiterated that discrimination against persons with disabilities in the allocation of life-saving treatment is illegal.
While one hopes the worst of these concerns will not materialize, it is clear that responses to the pandemic—with respect to more basic resources than ventilators—has been uneven, particularly for the most vulnerable, including persons with intellectual and developmental disabilities (I/DD):
- According to a New York association of I/DD providers, persons with I/DD receiving supports and services have proven to be 5.34 times more likely than the general population to develop COVID-19 and 4.86 times more likely to die from it;
- A single I/DD facility in Florida has 77 clients with COVID-19;
- In Massachusetts, forty percent of the residents of a state-run facility for people with developmental disabilities tested positive for COVID-19;
- In St. Louis, residents and staff at psychiatric and I/DD facilities accounted for 57 COVID-19 cases and two deaths.
The disparate burden borne by people with developmental disabilities—and shared by individuals in nursing homes across the country—was not the result of rationing high technology services, like ventilators. It primarily reflected the systematic failure of regulators and healthcare decision-makers to plan, prepare or provide for the foreseeable needs of persons with I/DD in a pandemic—whose risks are exacerbated by the congregate living experience and, in some cases, by other medical conditions.
When the crisis hit, access to personal protective equipment (PPE) was necessarily a priority for the hospital sector, which eventually received the attention it deserved. But the care systems that provide supports and services to the I/DD, seriously mentally ill and aging populations received less attention and even less PPE. In fact, until very recently in New York, home care agencies were not even considered eligible for emergency PPE supplies, even though they render care to some of the most medically fragile New Yorkers.
As J.W. Goethe observed long ago in The Sorrows of Young Werther, “misunderstandings and neglect occasion more mischief in the world than even malice and wickedness.” Whether care or protection is being denied to classes of individuals because of conscious and intentional implementation of discriminatory rationing policies or because of sheer ignorance or neglect does not make much difference to the victim. Let us hope that one of the results of this crisis may be that, before the next catastrophic event, we consider how we might best protect everyone.
James W. Lytle is Senior Counsel at Manatt, Phelps & Phillips, LLP.