Hospitals Must Do More to Protect the Emotional Well-Being of Intellectually Disabled Patients with COVID-19

Working at a large university hospital during the coronavirus pandemic, we have seen how people with intellectual disabilities (PWID) have been affected by COVID. PWID are four times as likely to get the virus and more than twice as likely to die from it (Turk et al., 2020). This disparity most likely reflects the higher rates of group-home living and increased comorbidities among PWID (Hakim, 2020; Turk et al., 2020). Less discussed are the emotional impacts of COVID on PWID and, specifically, the experience of those individuals that we see—the ones who are admitted to the hospital with the virus.

Many hospitals have enacted strict moratoriums on visitation during the pandemic, meaning that admissions of COVID-positive PWID frequently involve the separation of patients from their caregivers (Hafner, 2020). This separation can be psychologically traumatic for individuals across the spectrum of intellectual disability. PWID who rely on nonverbal communication often rely on their caregivers to be their voice and help them communicate (Purcell et al., 2000). Other PWID frequently rely on those with whom they are familiar to explain things to them and make information more accessible. The sights, sounds, and bustle of the “COVID floor” at our hospital would be scary to any patient, but those with intellectual disabilities have a particularly difficult time navigating this environment without the proper support.

As Human Rights Watch explained, many PWID being treated for COVID-19 without their caregivers may “have difficulty understanding why they are suddenly isolated and alone, and risk not being understood or misunderstood by medical staff in the absence of someone experienced in communicating with them” (Espinosa, 2020). One disability rights activist explained the hospital experience for PWID being treated for COVID this way: “it’s like waking up in the middle of the night and people are coming at you with a mask who you don’t know and then are inflicting pain on you” (Megan, 2020). Routine separation of caregivers from PWID mean that situations like this are happening all over the country

The emotional well-being of COVID-19 patients with intellectual disabilities must be prioritized by allowing certain supportive personnel by the bedside and providing them with personal protective equipment. When strict physical distancing measures cannot be compromised, hospitals should provide staff to stay with patients for emotional support and to help explain the treatment plan and obtain consent for procedures.

Some hospitals have recognized the importance of caregivers of PWID being treated for COVID-19. In Chicago, Rush University Medical Center made an exception to the moratorium on visitors during the pandemic, allowing one designated support person for PWID. The New York Department of Health made a similar stipulation ensuring that the ban on visitation did not apply to visitors of PWID (New York Department of Health, 2020). These are important steps that other hospitals should follow as soon as possible. The well-being of PWID being treated for COVID-19 depends on it.