Since COVID-19 roared onto the scene in March with warnings about the potential to overwhelm the health system, those of us who have disabilities or loved ones with disabilities started bracing for what that could mean for our families. Sadly, we know that when the going gets tough, people with disabilities are often hit especially hard: they are often cast aside and left behind during natural disasters. Sometimes this discrimination is baked into our emergency preparation and response policies in the form of rationing healthcare, denying medical treatment, and refusing to provide accommodations that are necessary for people with disabilities to get the medical care they need.
As the mother of a 20-year-old with Down syndrome and the Medical Outreach Director at the University of Kentucky’s Human Development Institute, I became particularly scared when the research showed that the death and hospitalization rates for people with intellectual disabilities are higher than for the rest of the population. I have seen my son lying vulnerable in a hospital bed as a child attached to oxygen masks to breathe while battling croup and pneumonia. I know how powerless and scary it feels to sit at his bedside, patting his back to encourage coughing as his oxygen levels drop.
I was scared of the direct impact of the virus on his health, but I was even more worried that Andy would be denied life-saving care and a ventilator if a hospital policy deemed his life less valuable and not worth saving. I was also terrified of him being alone in a hospital without someone to help him understand and communicate. You see, having someone in the hospital for Andy isn’t like a regular visitor—he needs someone there to explain health problems in a way he can understand and to make sure his voice is heard when his speech is sometimes difficult to comprehend.
Since we were concerned about the impact of the virus and the potential for discrimination, we knew the only way to keep Andy as safe as possible was to lock down as a family. Andy stopped working at the grocery store where he has been an employee for over 3 years, he stopped volunteering 20 hours per week at the local food pantries, and we committed to taking protective measures for the long haul until a vaccine is available. The rest of us have been fortunate to have jobs that can be done remotely, and we have been diligent in wearing masks and sanitizing and socially distancing. But we have still worried about what would happen if Andy does catch the virus. How can we protect him?
Janet Shouse, Program Coordinator, IDD Toolkit Project, Vanderbilt Kennedy Center UCEDD, is the parent of a young adult with autism and intellectual disability, and while some of her concerns about her son were similar, some were different. She has been worried about her son, who is basically physically healthy, coping with the stay-at-home measures. Evan, who doesn’t have a functional means of communication, doesn’t understand why he can no longer visit the stores he likes or go to the pool. As a result, he has experienced a good deal of frustration and has had a difficult time adjusting to his new “routine.” He is unable/unwilling to wear a mask, so his mother is still reluctant to let him go about his usual activities as she is worried about his risk of catching the virus and the possible complications he might endure.
Her concerns were less about the rationing of ventilators and healthcare and more about her son’s very real need to have someone with him should he have to be hospitalized. His inability to communicate and his likely unwillingness to cooperate with medical procedures have been deeply troubling to her.
Fortunately, disability advocates nationwide and the Office for Civil Rights (OCR) at the U.S Department of Health and Human Services (HHS) have been working tirelessly to make sure that when people with disabilities do get sick, they can get the help they need. In late March, OCR issued a bulletin shortly after disability rights advocates filed complaints in a number of states alleging discrimination on the basis of disability in protocols that allowed for the rationing of health care. In the bulletin, OCR Director Roger Severino said that “Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism. Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.”
This language has provided people with disabilities and their loved ones a measure of comfort, but it did not address the issue of how to provide supports to people with disabilities if they are hospitalized (with COVID or for any other reason) if a caregiver could not accompany the individual due to visitor restrictions. Recently, resolving a complaint in Connecticut, OCR made clear that to give people with disabilities equal access to health care, hospitals must modify “no visitor” policies to ensure patients with disabilities can safely access necessary in-person supporters. We hope other states follow suit quickly by issuing guidance that support persons are reasonable accommodations under civil rights laws.
Our family and families like ours must still be careful and do the best we can to avoid exposure to this virus that is so much more deadly for people with disabilities, but it is a comfort to know that the law is on the side of people with disabilities to ensure equitable access to health care and supportive services. In the past, families like ours have been left out and left behind during emergencies. So, we are very grateful to the disability advocates and government officials who recognize the value of people with disabilities and are working to ensure that our sons and others like them, have the weight of the law behind them moving forward.
This article was written in collaboration with the Center for Dignity in Healthcare for People with Disabilities COVID-19 Workgroup. For more information, email firstname.lastname@example.org.
HHS Press Office (2020). OCR Issues Bulletin on Civil Rights Laws and HIPAA Flexibilities That Apply During the COVID-19 Emergency. Retrieved from https://www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on-civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19-emergency.html
HHS Press Office (2020). OCR Resolves Complaints after State of Connecticut and Private Hospital Safeguard the Rights of Persons with Disabilities to Have Reasonable Access to Support Persons in Hospital Settings During COVID-19. Retrieved from https://www.hhs.gov/about/news/2020/06/09/ocr-resolves-complaints-after-state-connecticut-private-hospital-safeguard-rights-persons.html?fbclid=IwAR2eM_4IlRo6Ky7BOP36Xv4pRdoVELSZ9NH9a3wAQ8P5j0gO8sAqzusTz2k
Leach, M. (2020). Coronavirus: sixteen times more lethal for kids with intellectual disabilities. Retrieved from https://www.downsyndromeprenataltesting.com/coronavirus-sixteen-times-more-lethal-for-kids-with-intellectual-disabilities/