Vulnerable citizens get short shrift in pandemic
Sarah K. Lanzo, Independent Living
April 24, 2020
Unless you’ve spent the past several weeks marooned on a remote Pacific island, you probably know that the biggest fear of the 21st century is something very few of us had even heard about three months ago: the COVID-19 (Coronavirus Disease-2019) pandemic.
Something that is rarely discussed during this time is that people with disabilities, who are often likely to have underlying conditions that make them more susceptible to the novel coronavirus, are pushed to the back burner when issues of testing and treatment come up.
One month ago, in a New York Times editorial, scholar and disability rights author Ari Ne’eman spotlighted the decision by some doctors, hospitals and states to ration limited health care resources by a so-called “quality of life standard” that places patients with existing disabilities at the back of the line.
This sort of gross discrimination is not just unethical, it is illegal under the Americans with Disabilities Act, the Rehabilitation Act, the Affordable Care Act and other statutes. The U.S. Department of Health and Human Services’ Office of Civil Rights has formally deemed this practice “illegal discrimination.” The American Association of People with Disabilities and the Disability Rights Education and Defense Fund have both mounted legal challenges to it. Advocates have pointed out that the solution is not to pit one group’s needs against another, but to work to make sufficient resources, such as personal protective equipment (PPE) and ventilators available.
Even in Niagara County, hundreds of people with disabilities receiving health care through Consumer-Directed Personal Assistance Services, who have their medical supports provided by individuals coming into their homes, were not considered when those in need of PPE were prioritized.
Disability Rights New York has filed a complaint with the U.S. Department of Justice against Governor Andrew Cuomo for not having an American Sign Language (ASL) interpreter for the deaf at his live COVID-19 broadcast briefings.
In an effort to guarantee that the rights of people with disabilities are protected, the IL-NET National Training and Technical Assistance Center at Independent Living Research Utilization, TIRR Memorial Hermann Research Center, has collected links to COVID-19 resources permitting students with disabilities to learn about their civil rights and explore their options for emergency distance learning.
To further discourage discrimination, the Center for Dignity in Healthcare for People with Disabilities published a new fact sheet for health care professionals that describes best practices and legal requirements for health care when serving people with disabilities.
To help in having people with disabilities’ medical needs addressed, two staff members of Stony Brook University, a SUNY college, created a form for individuals with disabilities to complete prior to seeking medical attention for COVID-19 symptoms, to record their needs and wishes to assure quality medical treatment.
With the push on both the local and national fronts to make sure the needs of people with disabilities are being addressed, the Centers for Disease Control and Prevention now has more than a dozen COVID-19 informational ASL videos available on its website.
Various organizations have issued COVID-19 information sheets in plain language for persons with intellectual and developmental disabilities, and a point-to-words-or-symbols communications card for the hearing impaired.
We all have family members who are vulnerable to this invisible enemy. Provided the same consideration that’s given to the rest of mankind, people with disabilities can continue to live in their neighborhoods, work in their communities, and engage and support all elements of our society.
Sarah K. Lanzo is the director of Independent Living of Niagara County, a member of the Western New York Independent Living Inc. family of agencies that serve individuals with disabilities. For more information, call 284-4131, extension 200.