PATIENT PERSPECTIVE
Caring for the disabled Pandemic-driven new challenges BY JOAN WILLSHIRE, MPA
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or people with disabilities, pandemic-related isolation can be terrifying and tragic. The stress can exacerbate mental illness and other health problems, some of them life threatening. Add the loss of mobility and independence, the disruption of routines, the day program that doesn’t open, the beloved caregiver who doesn’t come, and the lack of support that leaves some families no choice but to institutionalize their loved ones, and you have a sense of what many in the disability community are going through every day due to COVID-19. People with disabilities have been living in isolation for decades, but now their isolation is compounded—particularly for those in congregate living, since many facilities have enacted rules limiting visitation. It’s easy to feel totally alone and without family support because so many people stay close to home, avoid gatherings, and are unable to visit loved ones in a closed facility. The shortage of personal care attendants adds to this issue. Lapses in routine care can turn into crises when people with disabilities go to hospitals, where exposure to COVID-19 is a real danger. When a person with a disability becomes critically ill with the virus, is that person
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the first or the last to receive critical medical care if ICUs are full and ventilators are scarce? A heightened awareness of these issues and a few simple tips could help physicians provide more effective care for patients with disabilities.
Levels of care Several states—among them Alabama and Washington—have seen lawsuits alleging rationing and improper levels of critical medical care being delivered to the developmentally disabled population. In response, states agreed to review and update their medical standards of care to address rationing and discrimination against people based on disability, age, or perceived low quality of life. Excluding certain people with disabilities from access to life-saving treatment such as ventilators based on their disabilities and deprioritizing others based on their disabilities is not the solution to saving supplies or the rationale for choosing who receives critical care during this pandemic. States must also continue to comply with the 1999 U.S. Supreme Court ruling in Olmstead v. L.C., which stated that people with disabilities have a right to access to services in the community of their choice. The medical community must avoid moving people with disabilities into institutional care just to ensure that they are safe. The question is whether or not their safety justifies their segregation. Congregate settings often are not the best solution because of limited support and resources for disabled individuals— as well as heightened risk of exposure to the coronavirus.
Behavioral health issues It is very common for people with physical disabilities to have mental health issues as well. For these individuals, isolation can compound symptoms due to stress and anxiety. Individuals with mental illness may not want to go to a clinic for a variety of reasons, including fear of exposure to the virus. A physical disability could also be the reason stopping them from getting to a clinic with limited access if they start to show signs of the virus. The negative stigma of mental illness is as much of a barrier as stairs in front of a clinic door. Individuals with mental illness may also distrust the medical community due to previous traumatic experiences in and out of hospital settings. Because of this distress, they put off seeking treatment even if they have symptoms. If they contract COVID-19 and recover, they fear having a chronic respiratory condition.
Heightened risk
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SEPTEMBER 2020 MINNESOTA PHYSICIAN
According to an article in the June 2020 issue of Disability and Health Journal, COVID 19 appears to pose a greater risk of severe outcomes, including death, for those with intellectual and developmental disabilities (IDD), especially those living in a congregate residential setting. More common disabilities, such as cerebral palsy and Down syndrome, also are in this category, with patients who are more likely to have pre-existing conditions. People with disabilities are used to the uncertainty of medical care. For example, they’re used to having to try things out first to see if tools,
