People with disabilities are admitted into the hospital nearly five times more than those without disabilities. Once there, they should expect to experience the same quality and standards of care as every other patient. After all, hospitals and doctors are required to give every person with a disability the “reasonable modifications” necessary for them to receive equal care. Unfortunately, throughout the COVID-19 pandemic that has not always been the reality. For some individuals with disabilities, pandemic protocols have made hospitals more isolating, restricting, and frightening than ever before.
When the COVID-19 pandemic began, hospitals enacted strict “no-visitor” policies to prioritize the health of hospital patients and staff. While this was not ill-intentioned, the negative effects were disproportionately felt by people with disabilities. Some of these effects were detailed in a complaint filed by disability rights associations against the State of Connecticut in the summer of 2020. The complaint described how these policies “deprived individuals of their right to make informed decisions, provide informed consent, and resulted in harms such as unnecessary physical and chemical restraints”.
To put it plainly, this complaint alleges that individuals with disabilities were forcibly undergoing unconsented medical treatment while experiencing both physical restraints such as limb ties or weighted vests and chemical restraints such as movement restricting/sedative drugs. For one individual hospitalized in Massachusetts, the inability to receive her reasonable modification may have led to her death. In a National Public Radio (NPR) article released shortly after the patient’s death, her family describes how her diagnoses of Down Syndrome, Alzheimer’s disease, and speech disorder should have qualified her for an exemption for a communication aide.
However, she was alone and unable to communicate as she pulled out her IV and oxygen tubes, eventually causing her to be transferred to the ICU and restrained. According to her family, she “died confused and alone.” The NPR article also referenced an inquiry into the policy, to which the American Hospital Association stated, “it is up to each individual hospital to set up their own protocol” and “When possible, hospitals have worked to accommodate companions in the room for those who could not speak for themselves.” Unfortunately for this patient in Massachusetts, honoring her right to communicate that day must not have been ‘possible’.
Although it has taken tragedy and mistreatment to get here, there is currently much more attention on the rights of people with disabilities when hospitalized. Many hospitals have recently released informative bulletins which clearly outline patient rights. In this particular flyer, the rights are referenced to the Americans with Disabilities Act, the Rehabilitation Act, and the Affordable Care Act. While hopefully there will never be another situation like early COVID where three federal laws were disregarded, the more information available to guide patients, families, caregivers, and medical providers, the better.
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