Advocates are seeking clear state policy to prevent discrimination when it comes to medical rationing decisions due to the COVID-19 pandemic.
A previous post covered disability advocates filing complaints against state policies that explicitly discriminated against those with disabilities when it comes time to choosing who gets scarce medical resources, like ICU beds and ventilators. Since that post, at least two more states, Tennessee and Kansas, have had complaints filed against them for their respective state policies.
But, what to do if a state has no stated policy on how those with disabilities should be treated in a time of medical scarcity?
Existing laws & guidance
There are multiple federal laws prohibiting such discrimination. The American with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act each have provisions prohibiting discrimination against those with disabilities when it comes to access and delivery of medical care. In a perfect world, these laws, some of which have been on the books for decades, would be enough.
But they’re not.
This is why the initial complaints against the guidance of Washington and Alabama prompted Health & Human Services’ Office of Civil Rights to issue a bulletin explicitly directing that:
[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements about a person’s relative “worth” based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.
The Disability Rights Education & Defense Fund has provided a helpful document on applying the OCR guidance to avoid disability-based discrimination in treatment rationing.
Nature abhors a vacuum
While the laws on the books prohibit discrimination and the OCR guidance is laudable and useful, they likely will still not be enough. This is because in the absence of specific guidance, practitioners will fall back to their default settings, which studies have shown result in discriminatory choices, whether they be conscious or unconscious.
These concerns are not meant to be a broad indictment of medical professionals. Indeed, they are the frontline heroes in the fight against the COVID-19 pandemic. They deserve our respect and praise.
And, they need our help.
In this crisis, and particularly if/when the time arrives when tough choices must be made on who gets an ICU bed and who does not, who gets a ventilator and who does not, the stress on these professionals will be even greater. In these moments, we all fall back on our training, our own experiences, and, knowingly or not, our own biases. When it comes to fairly treating those with intellectual and developmental disabilities, unfortunately, that training and experiences are often lacking or misguided and bias persists against the disabled.
Alice Wong is an author and disability advocate who is ventilator-dependent. She has written a powerful article about her concerns of how she and others like her will be treated in times of medical scarcity. She quotes Dr. Joseph A. Stramondo from San Diego State University, who is himself disabled, who explains the “disability paradox”:
…there is a significant body of empirical evidence showing that there is a substantial gap between a disabled person’s self-assessment and how their quality of life is judged by folks that have never experienced their disability. Some prominent bioethicists even refer to this as the “disability paradox.” To me, there is little paradoxical about disabled people valuing their own life more than it is valued by non-disabled people making judgments based on stereotype and stigma. To conceptualize it as paradoxical is to wrongly assume that disability inevitably diminishes well-being.
Yet, when having to decide which patient gets a needed medical resource, a person with an intellectual disability vs. a person without one, this paradox will consciously or subconsciously guide a medical practitioner to lean towards caring for the patient without an intellectual disability.
The need for state guidance
In this context of laws on the books and federal guidance that says discrimination should not occur on the basis of disability, but the disability paradox that will inform medical decisions in times of scarcity, there is a need for explicit state guidance prohibiting that discrimination.
As anyone who has followed the news can ascertain, in America’s federal system, it is the state governors and agencies who have the greatest impact on how to deal with the COVID-19 pandemic. On a near daily clip, a new executive order or agency guidance is announced to implement mitigation measures to slow the spread of the virus.
Similarly, an executive order or guidance should be issued and publicly broadcast to remind health care professionals of their legal obligation to not discriminate against those with disabilities.
Here in Kentucky, our Protection & Advocacy Agency is seeking this measure from the Kentucky Governor and his agency officials.
On the day of this post, P&A issued a letter to the Governor outlining the need for this executive order or guidance and seeking its announcement like all other measures that have been implemented to ensure safe, effective care is rendered.
P&A commends the Governor for his efforts to include all Kentuckians in our efforts to slow the spread, not the least of which is the prominent role his sign language interpreter has played in his daily briefings, with her enjoying some well-deserved credit and a little bit of fame.
By issuing this guidance prohibiting the discrimination of individuals with intellectual and developmental disabilities from receiving and continuing to receive medical treatment, it will be another forward-thinking measure, and an inclusive measure, in the fight against the COVID-19 pandemic.
P&A calls on the order to include the following criteria to avoid discriminatory outcomes:
- Treatment allocation decisions must be based on individualized determinations, using current objective medical evidence. Treatment decisions should not be based on generalized assumptions about a person’s disability, including the severity of the individual’s disability.
- Treatment allocation decisions cannot be based on misguided assumptions that people with disabilities experience a lower quality of life or that their lives are not worth living.
- Treatment allocation decisions cannot be based on the perception that a person with a disability has a lower prospect of survival. While the possibility of a person’s survival may receive some consideration in an allocation decision, that consideration must be based on the prospect of surviving the condition for which the treatment is designed—in this case, COVID-19—and not other disabilities.
- Treatment allocation decisions cannot be based on the perception that a person’s disability will require the use of greater treatment resources. Modifications must be made where needed to ensure persons with disabilities have equal opportunity to benefit from treatment.
Suggested measures as the days are numbered
In those states, like Washington, Alabama, Kansas, and Tennessee, where existing policy explicitly calls for discrimination against those with disabilities, advocates should follow the example of the advocates in those states by filing a complaint with OCR.
In those states, like Kentucky, where there is silence and no guidance, advocates should seek their own version of guidance in their home states from their governors. The letter from P&A should serve as a template and hopefully help others proactively seek to prevent discrimination rather than react when discrimination occurs.
For every state, the days are numbered. In Kentucky, the peak of COVID-19 cases is projected to occur on April 21, just two weeks from the date of this post. If the guidance is to have any effect, the sooner it is issued the better, so that it can be disseminated throughout the various communication channels and reach the largest numbers of hospitals, health systems, physicians, nurses, emergency responders, and other health professionals.
The guidance should be seen for what it is: a resource, guiding health care professionals to prevent discrimination. This guidance is needed in these stressful times to ensure the law is followed, that all people are treated fairly, and that those with intellectual and developmental disabilities will not be discriminated against.
Author’s note: I was grateful to be included in the task force assembled by P&A in drafting the letter seeking guidance and am proud to be a signor of the letter. The views expressed here are entirely my own and are not to be attributed to P&A or any of the other, numerous organizations endorsing the letter.
Recent Comments