Valuing and Devaluing the Disabled Human Life in Florida
By Matthew Dietz
As of April 19, 2020, over 300 assisted living facilities and nursing homes have had COVID-19 cases, no numbers are known for all congregate care facilities such group homes for persons with developmental disabilities, or detention facilities and jails. There are also hundreds of thousands of Floridians who receive daily home health care that may be slowly suffering in their homes, however the toll of this pandemic is not going to be fully revealed until we compare the typical mortality rate with the mortality rate during the pandemic.
The response to this outbreak is far from the empathetic “American Way,” but instead, we have lapsed into the Hobbesian ethic, where we deny essential testing to the most vulnerable, deny scarce life-saving equipment, rationalize the denial by claiming that the old and disabled would have died in any event. Then to place insult onto the injury, Florida may immunize those who deny care from total immunity. Even in the event we are overreacting to this pandemic, it still should be a clear signal that disability discrimination may be the only tenet that will be alive and well in our society.
Failure to test for COVID-19
In partnership with municipalities, the Florida Division of Emergency Management and the National Guard, developed drive-thru or walk-thru COVID-19 testing facilities for those with symptoms, and have evolved to any person who would like a test. However, there was no provision at all made for those persons who could not drive to these testing facilities and wait hours for their turn. The failure to ensure that the testing program is available to persons with disabilities who cannot drive to a drive though facility who are susceptible to contracting COVID-19, constitutes discrimination under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. While some long-term care facilities can contract for private labs to conduct testing, very few (if any) have done so, and residents have no options. Most of the persons without access to transportation have no alternative. Since the pandemic, paratransit services are limited to essential medical services, such as dialysis and chemotherapy; accordingly, there are no transportation options. Miami-Dade County has expanded its food delivery program, but for those areas without a robust food delivery program, or for persons without knowledge of community services, this lack of transportation further leads to food insecurity.
Recognizing that this blanket denial of a program to those persons with disabilities, Disability Independence Group joined with Disability Rights Florida to demand that the State of Florida, Dade and Broward Counties immediately provide mobile testing facilities to go to those who need to be tested. (DRF Press Release and Letter to Miami-Dade) Miami-Dade County immediately implemented a program to test those persons over 65 and persons with disabilities who cannot travel to testing sites. Miami-Dade also recognized that such persons are more susceptible to COVID-19 and urged such persons to stay home. Broward Country has not, citing that it’s not their responsibility to do so. Many counties in Florida have acted like Broward County, such as Palm Beach County.
Deciding that Persons with Disabilities should not receive lifesaving care
To the extent that a person with a disability is able to be tested and goes to the hospital for treatment, the question is whether he or she will receive the care that is needed. However, in the midst of this crisis, on April 9, the Florida Hospital Association urged the approval of the guidelines of the Florida Bioethics Network (FBN Standards) to implement standards of which persons should receive life-saving ventilators. The overarching premise of the guidance is that “Patients most likely to survive to discharge and live longest in the community after discharge are given priority.”
On March 28, 2020, the U.S. Department of Health and Human Services issued guidance that persons cannot be discriminated against in the provision of health care. According to this guidance, that no person will be disqualified from receiving critical care solely on the basis of their disability, and that all decisions must be based on an individualized analysis of the patient, and not based on stereotypes, assessments of quality of life or judgments about a person’s ‘worth’ based on the presence or absence of disabilities or other factors.
The use of life expectancy, long term prognosis, or “life years” as a basis for exclusion from treatment during COVID-19 is just this type of discrimination against people with disabilities who have or who are thought to have a shortened life expectancy due to their disabilities.
Such individuals include people with cystic fibrosis, spinal muscular atrophy, ALS, kidney disease, and metastatic cancer. People with these and other disabilities regularly outlive the prognoses that doctors ascribe to them, often by decades. Moreover, having disability diversity is valuable and essential to our society, even if some people with disabilities do not live as long. People with disabilities make unique contributions – including to developing the systems of care we need during a public health crisis. The guidance names co-morbidities with no connection to COVID to determine longevity, such as mild dementia, heart conditions, cancer diagnosis, and immunocompromised states. By naming certain conditions, that have no relationship to the short term survivability to COVID-19 or even those that do, the message that it sends out is that their lives are not worth saving, and those persons will not even seek treatment – whether or not there is a shortage of equipment. In a pandemic situation, where rumors circulate with as much frequency as the truth, this message is harmful. This message of lives not worth saving.
Last week, Disability Independence Group, along with a consortium of Florida disability organizations, voiced our opposition to these standards to Governor DeSantis (letter to Gov. DeSantis), and had discussions with the Florida Bioethics Network about our concerns and provided our input.
Qualified Immunity for COVID-19 decisions by Hospital and Long-Term Care Facilities
The Florida Health Care Association sent a letter to Gov. Ron DeSantis this month requesting immunity from any liability to nursing homes, hospitals and other facilities, civil or criminal, for any harm or damages alleged to have been sustained “as a result of an act or omission in the course of arranging for or providing health-care services,” during the COVID-19 public health emergency.
So, the trifecta is that (1) we will not test you; (2) we may not treat you; (3) there’s nothing you can do about it because we are immune to liability, either criminal or civil.
While I have the highest respect for medical professionals, I have been suing hospitals and providers of medical care for twenty years for intentional discrimination under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act for violations of theses acts in their practices against persons with disabilities. As a general issue, without targeted disabilities training, doctors and medical staff do not recognize implicit bias with regards to disability discrimination. The most frequent issue is the failure to provide a sign language interpreter for a Deaf patient – despite clear rules and policies requiring effective communication. In this situation, the failure to provide such accommodations when providing care will lead to the failure to adequately disclose medical histories, comorbidities, and will result in miscalculations of the short-term survivability scale.
However, the most common effect of a disability in this instance is the view that such disability is a chronic medical condition that may affect care or long-term survivability. In most circumstances, the disability should not have an effect on the ability to survive the COVID-19 illness. The use of speculation as to long-term survivability violates the ADA because survivability is inherently speculative. For example, under ADA/504, a risk must be real, and not speculative or hypothetical.
Primarily, the treating professional for COVID-19 will not have detailed knowledge about the specifics of the conditions of a person with a disability and will make assumptions about the condition. In addition to the assumptions that are made about disability, when assessing survivability past the duration of the specific condition, even with accurate information, the risk is inherently hypothetical and speculative. It also allows the professional’s own bias to seep in to determine the applicable risk on that individual person. Accordingly, assessment for such hypothetical risk is tantamount to discrimination.
By immunizing such decisions, the government may be encouraging such decisions to be made, and if they are made, such decisions will be based upon speculation and stereotypes of disability and not actual risks.
Future Steps
The biggest failure of our community is the failure to incorporate pandemic planning into our disaster plan. The creation of programs on the fly without provisions for persons with disabilities demonstrates the scope of this failure. When this is all over, it is essential to convene all stakeholders to investigate this failure and how to ensure that it does not occur again in the future.
