AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

As hospitals scramble to make room for patients with COVID-19, patients with developmental disabilities are remaining in local hospitals past the point of medical necessity because the residential programs that care for them are not equipped to bring them home safely.

Who's Next?

BY H. BARRY WALDMAN, DDS, MPH, PHD, RICK RADER, MD, DHL (HON), SETH M. KELLER, MD AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

DATE: 2023

"Influenza, or flu, is a virus that attacks the respiratory system. The flu virus is highly contagious: When an infected person coughs, sneezes or talks, respiratory droplets are generated and transmitted into the air, and can then be inhaled by anyone nearby… The flu pandemic, the deadliest in history, infected an estimated 500 million people worldwide—about one-third of the planet's population—and killed an estimated 20 million to 50 million victims, including some 675,000 Americans. The flu was first observed in Europe, the United States and parts of Asia before swiftly spreading around the world. At the time, there were no effective drugs or vaccines to treat this killer flu strain. Citizens were ordered to wear masks, schools, theaters and businesses were shuttered and bodies piled up in makeshift morgues before the virus ended its deadly global march."1 

NO!

This may sound as an all too real future post-mortem on the current coronavirus-19 (COVID-19). In reality, this is a review of the 1918-1919 Spanish Flu written in the 21st century.

the 1918-1919 Spanish Flu written in the 21st century. "The Spanish Flu did not originate in Spain, (sic) though news coverage of it did. During World War I, Spain was a neutral country with a free media that covered the outbreak from the start, first reporting on it in Madrid in late May of 1918. Meanwhile, Allied countries and the Central Powers had wartime censors who covered up news of the flu to keep morale high. Because Spanish news sources were the only ones reporting on the flu, many believed it originated there (the Spanish, meanwhile, believed the virus came from France and called it the "French Flu.") 1

DATE: APRIL 2020

In all the reports reviewing the horrendous results from the flu pandemic in the early years of the twentieth century, there were no references to the care and impact on individuals with special needs during that period. The reality was that persons with special needs "did not exist" on the public's conscience. Individuals with special needs were sequestered in institutions or backrooms of homes and educated to some degree in separated educational environments. (In many instances, they were perceived as somehow reflecting shamefully on their families and/or were totally unable to develop in some manner.) As a result, it was only within the last decades that any attention was being paid to fully ensure the education and preparation of students training for the health and education sciences to care for this population.

Now, with coronavirus cases continuing to climb and hospitals facing the prospect of having to decide how to allocate limited staff and resources, the Department of Health and Human Services (HHS) is reminding states and health care providers that civil rights laws still apply in a pandemic.

"States are preparing for a situation when there's not enough care to go around by issuing "crisis of care" standards. But disability groups are worried that those standards will allow rationing decisions that exclude the elderly or people with disabilities… the HHS Office for Civil Rights put out guidance saying states, hospitals and doctors cannot put people with disabilities or older people at the back of the line for care." 2 "We're concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability, said Roger Severino, the director of the Office for Civil Rights. We're concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care." 2

"Overall, the guidelines from HHS serve as a warning to states. The department's Office for Civil Rights can investigate health care providers who are accused of violating civil rights law and tell them to correct something. If the issue is not corrected, the office can ask the Department of Justice to prosecute." 2 (emphasis added)

WHOSE LIFE IS WORTH SAVING?

"While the physician's responsibility remains with the health and welfare of individual patients under the physician's care, the well-being of the community as a whole must also be considered at a systems level including in institutional policies and other guidelines. This requires prioritization of resources. But prioritization must not be discrimination. Fairness and other professional responsibilities of physicians require that clinicians, their institutions and health care systems not discriminate against a class or category of patients (e.g., based on age, race, ethnicity, disability, sex, gender identity, social status or other personal characteristics). Treatment decisions must not be based on unjust and prejudicial criteria." 3

As hospitals scramble to make room for patients with COVID-19, patients with developmental disabilities are remaining in local hospitals past the point of medical necessity because the residential programs that care for them are not equipped to bring them home safely. "The Office of Emergency Management said the program for the disabled was too low priority to qualify for assistance in this case." 4 (emphasis added)

Advocates in Washington State fear that people who are disabled could be at higher risk of death when doctors and hospitals make end-of-life triage decisions. 

"The triage care plan could result in end-of-life decisions that disadvantage those with disabilities… complaint calls for the federal government to quickly intervene to investigate, and make sure that doctors and hospitals do not discriminate against people with disabilities when making treatment decisions… Washington's rationing scheme places the lives of disabled people at serious risk… quality-of-life judgments document say doctors should consider underlying diseases that have a low likelihood of short-term survival in deciding whether those patients should receive scarce medical resources. That could affect people who have ailments such as cystic fibrosis."5 Then there are individuals with Down syndrome who are already more susceptible to respiratory diseases due to smaller air passages and being more immuno-compromised. Added to that, is the higher rate of cardiovascular pre-existing conditions, poorer access to healthcare and lower levels of vaccinations for the flu. All these factors combine to form the grim outcome for patients with Down syndrome must face if infected with a flu pandemic. 6

Down syndrome must face if infected with a flu pandemic. 6 "These are not the times to throw out our core principles of fairness and equality. We don't want to look back on these times like we had in other (periods) when we've had great fear." 5 (emphasis added)

At the Hubert Humphrey Building in Washington D.C., which houses the Department of Health and Human Services, a quote of his is inscribed: "The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life, the sick, the needy and the handicapped." 5

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TERRIFYING ECHOES: The Lieutenent Governor of Texas infers it's a good idea to save the economy by getting rid of old folks, and we suppose the next step is getting rid of anybody who does not meet some "accepted" physical and mental standard, or racial, color and religious normality. But who is to judge which child, teenager, young and older adult should be sacrificed for those who are more valuable or sacred?

A PERSONAL NOTE (HBW):

"The lieutenant governor of Texas argued in an interview on Fox News Monday night that the United States should go back to work, saying grandparents like him don't want to sacrifice the country's economy during the coronavirus crisis… Patrick also said the elderly population, who the Centers for Disease Control and Prevention said are more at risk for COVID-19, can take care of themselves and suggested that grandparents wouldn't want to sacrifice their grandchildren's economic future." 7

I am 85 years of age; a proud grandfather of five terrific children. (Yes, I am biased.) I continue to teach in my 50th year at the School of Dental Medicine at Stony Brook University in New York State. I have spent more than 60 years advocating for individuals with disabilities. Only by exaggerating (actually by lying), I claimed that a national columnist with a son with Down syndrome was going to go public about the refusal of the Commission on Dental Education (CODA) to require schools to prepare dental and dental hygiene students to provide for individuals with disabilities. Only then did CODA establish new standards to prepare students for the populations with special needs. When I lobbied to do it honestly by describing the omission regarding the needs of tens of millions of individuals with disabilities in our country, it just didn't work! So now the Texas Lt. Governor infers it's a good idea to save the economy by getting rid of old folks and I suppose the next step is getting rid of anybody who does not meet some "accepted" physical and mental standard, or racial, color and religious normality. How does this statement differ from the ones made in Germany in the 1930's and 1940s? When I was ten years old, I remember the excitement when we learned in school that Hitler committed suicide; or was that only a myth?

Yes, the number of pills that I take daily is greater than the number of hairs on my head. We are talking about men and women who have had many years of life and wouldn't it be reasonable for others to have their fair share? But who is to judge which child, teenager, young and older adult with ________________ (fill in any disability, gender, race, religion, etc.) should be sacrificed for those who are more valuable or sacred?

WE STAND WITH YOU

The American Academy of Developmental Medicine and Dentistry (AADMD) is a leading organization for the advocacy of people with intellectual and developmental disabilities; as well as for the education and training of their health care professionals. In the current Covid- 19 crisis, two major issues have surfaced that demand immediate action to protect the health and safety of this medically underserved and marginalized population – equal access to ventilators and the ability to have a caretaker accompany them to emergency rooms. The following two policy statements will be of value for our readership, family members, advocates and health care providers in their efforts to secure needed assistance for the children and adults with special health care needs. •

ABOUT THE AUTHORS:

H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. Email: h.waldman@stonybrook.edu. Rick Rader, MD, DHL (Hon) is the Director of the Morton J. Kent Habilitation Center, Orange Groove, Chattanooga, TN; Senior VP Public Policy, American Academy of Developmental Medicine and Dentistry; Adjunct Professor, Human Development, University of Tennessee-Chattanooga. He is Exceptional Parent Magazine's Editor in Chief. Seth M. Keller, MD is Co-Chair, National Task Group on Intellectual Disabilities and Dementia Practices Chair; Adult IDD Section, American Academy of Neurology; Past President, American Academy of Developmental Medicine and Dentistry. Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles; and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

References

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