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Tuesday April 7th, 2020
Note: The following op-ed co-authored by Rep. Jim Langevin (D-R.I.) and Jay Ruderman appeared in the April 7 edition of The Hill.
The skyrocketing infection rate and increasing death toll from COVID-19 has revealed just how vulnerable our communities are to a global pandemic. Older Americans are considered to be at a particularly high risk for complications from the virus.
However, what too often flies under the radar is COVID-19’s threat to an even larger demographic community – the one in four Americans living with a disability. Many people with disabilities have underlying medical conditions that place them in a higher risk category, but there is not nearly enough discussion about the difficulties they face during these fraught times. Simultaneously, in some U.S. states, the disability community’s civil and human rights are being dangerously flouted as they face unprecedented levels of risk.
For people with disabilities, navigating community barriers is a challenge even in normal times. In a pandemic, those barriers become even more complex. If a person has a mobility issue, they may not be able to obtain supplies that are critical while they are isolated. If a home health aide gets sick, who will provide life-sustaining supports? For those with mental health conditions, losing access to all forms of face-to-face human interaction due to social distancing could exacerbate existing feelings of anxiety and depression.
People with disabilities should be among the first Americans protected by the medical system and their governments in the age of coronavirus. Yet scenarios once relegated to dystopian novels are becoming frightening realities, especially in regard to the rationing of lifesaving medical care and equipment, including ventilators. In Alabama, “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” Washington state recommends transferring patients with “loss of reserves in energy, physical ability, cognition and general health” out of hospitals and into outpatient care.
Appropriately, the federal government is taking action to prevent these disturbing developments on the state level. On March 28, the Office for Civil Rights within the Department of Health and Human Services (HHS) issued a bulletin with guidelines aimed at ensuring that entities covered by civil rights authorities keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of race, color, national origin, disability, age, sex, and exercise of conscience and religion in HHS-funded programs.
Nevertheless, fears remain that Americans with disabilities such as Down syndrome, cerebral palsy, and autism will be cast aside by a health care system that is increasingly overwhelmed by COVID-19, conjuring images of the harrowing reports of Italians over age 80 being “left to die.”
While some may feel that the treatment of younger, abled-bodied individuals should be prioritized over people with disabilities and compromised immune system, we cannot make judgments on who lives and who dies. We cannot cast aside any human because of their age or disability. We can and must do better.
This complex ethical conundrum will not be resolved overnight. But even for Americans who do not work in health care and its associated regulatory bodies, or those who do not hold elected office in state legislatures and on Capitol Hill, there are modest steps that can be taken immediately to support the most vulnerable among us — from seniors to people with disabilities to other at-risk individuals.
Be human. Be a good neighbor. A simple text message, phone call, or video chat makes an immeasurable impact. Going a step further, by ensuring that at-risk individuals have the supplies they need while maximally adhering to hygiene and safety standards when providing assistance, can save a life. Lend a hand, but from a safe distance. Strictly follow all local, state, and federal guidelines on COVID-19, as the last thing people with disabilities and other vulnerable populations can afford is exposure to infected individuals.
Simultaneously, we will do everything within our power to ensure that COVID-19 in not a threat to the civil rights of people with disabilities. America’s medical system must not discriminate against people with disabilities in need of treatment on the basis of a disability alone. America was built on certain inalienable rights, and even a pandemic should not threaten those.
U.S. Rep. Jim Langevin (D-R.I.) is the first quadriplegic to serve in the House of Representatives. Jay Ruderman is president of the Ruderman Family Foundation.