People with disabilities have a long history of unequal access to, and discrimination in, oral health and primary care, which has resulted in large health disparities between disabled individuals and their nondisabled peers – as well as poorer health outcomes. The primary causes for this are well known: healthcare facilities lack accessible medical diagnostic equipment, like exam tables, radiology machines, and weight scales, the lack of which is a significant barrier to obtaining preventive care for those with mobility disabilities; dental and medical education lacks instruction on physician’s nondiscrimination obligations under the Americans with Disabilities Act (ADA); and lacks instruction on disability cultural competency – including how stereotypes, biases, and assumptions about a patient with a disability can unjustly impact treatment decisions. This concern spurred a collaborative effort between the National Council on Disability (NCD) and Henry Schein Cares in 2019 to help equip and educate the medical and dental communities in disability competency. COVID-19 quickly highlighted these issues and the critical need for nondiscriminatory access to healthcare for people with disabilities.
In late 2019, NCD published a series of bioethics reports finding that the lives of persons with disabilities are often devalued by medical professionals. Biases and assumptions about the “quality of life” of people with a disability are societally pervasive and have long resulted in the devaluation and disparate treatment of people with disabilities, and in the medical context, these beliefs can seep into treatment decisions with deadly consequences. These findings were validated by the treatment of people with disabilities in response to COVID-19.
Opening any newspaper or media outlet during the past months made clear that people with disabilities should fear for their lives – not only of contracting COVID-19, but of what could happen if they had to seek treatment for it. Widespread reports predicted shortages of ventilators necessary to save lives and of discriminatory Crisis Standards of Care that states were implementing if rationing ventilators became necessary. Several states’ Crisis Standards explicitly stated that people with certain disabilities or chronic illnesses would not receive COVID-19 healthcare if rationing became necessary, others established point systems which put them at the back of the line for care. These plans were shocking given that the Centers for Disease Control and Prevention announced that people with certain disabilities and pre-existing health conditions are at increased risk for the most severe effects of the virus. To implement such plans would allow a deadly type of discrimination. We must ask why.
The overt discrimination faced by people with disabilities in the response to this pandemic sparked a long-needed federal response to help address it. In March, the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) issued a bulletin to medical providers on their obligation to provide non-discriminatory medical care under the Americans with Disabilities Act (ADA) and other federal laws. It makes clear that even when healthcare resources are limited, the civil rights of people with disabilities cannot be suspended or limited, and that treatment decisions must be made consistent with federal law, based on an individualized assessment and objective medical evidence, not influenced by stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities.
Every life is valuable. The presence of a disability does not diminish that value and people with disabilities should not be abandoned by the medical system they must rely on. COVID-19 has reminded us that the medical establishment has a critical role in fulfilling the mandate of the ADA – the landmark civil rights law that turns 30 this week. People with mobility disabilities need greater access to preventive care. Although accessible medical equipment is available, it is not commonly found in medical facilities. Most people with disabilities report a good quality of life, while the medical establishment has often devalued, and misunderstood, life lived with a disability. Let us work vigorously to bridge these gaps in understanding. It is time to increase accessible, nondiscriminatory medical care by breaking down the physical and attitudinal barriers that so often leave people with disabilities behind.
Henry Schein Cares and NCD hope that this national discourse will result in a greater understanding of the equal value of a life lived with a disability, increase knowledge of the civil rights protections of people with disabilities, and end the influence of stereotypes and biases that impact medical decisions.