Yona Lunsky is Director of the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health, and the Health Care Access and Developmental Disabilities Program. She is a Professor in Psychiatry at the University of Toronto, and an adjunct scientist at ICES.
I am writing this primarily for people working in hospitals.
I want you to know some important things about my sister because it is possible that in the coming months you might meet her, or someone like her. If that happens, I hope you will meet me too. But like many others, I am worried that if my sister needs to go to the hospital during COVID-19, I will not be allowed to be there with her.
Most of the time, my sister is a very happy woman, comfortable in her own skin and not afraid to show her emotions in full force. She loves meeting new people, having a conversation, and she will say what is on her mind. She can dance for a long time without getting tired and she has some great moves. She loves all music and in addition to knowing the words to many songs, she can fake the words to the songs she doesn’t know with finesse.
My sister lives in a group home for people with developmental disabilities.
Although she thrives on routine and her many activities with friends and family, she has not been free to do many activities since the onset of COVID-19. She relies on her resourceful and committed staff to come into her home to help her with everything from waking up and getting dressed in the morning, to purchasing food, preparing meals, managing finances, and organizing all of her activities until it is time for bed. She trusts and hopes her staff are not exposed to anyone with COVID-19, so they can keep her safe. Although not receiving the same attention as outbreaks in long-term care, they can happen where people like my sister live and this is a major fear for many people with disabilities, their staff, and their families.
If you meet my sister during COVID-19, she will not be able to tell you about what her life is like outside of hospital. You will be seeing her at her worst, and you won’t have anything to compare her to. She may act as though she understands much more than she does. You won’t know how to interpret her pain, and she won’t know how to ask for the help she needs. Communication tools can be helpful in this regard, but without an informed caregiver at her side, they may not be enough. She needs the support of her family to make any health care decisions. We hold her health history, we understand her the best, and we are essential partners in her care.
I hope that my sister won’t get sick and need hospitalization, and that if she does I will be there to support her. I know, however, that hospitalizations are more likely for adults with developmental disabilities than the rest of us, and that they are almost four times as likely to die prematurely. And I know, through conversations with people with disabilities and their families from across the country, that the extent of my involvement will depend on the hospital she goes to, and the team providing her care. These decisions will be influenced by the knowledge and attitudes of that team, hospital policy, and what else is going on at that hospital at the time of her admission.
I fear that underlying attitudes and knowledge gaps about developmental disabilities in health care workers and hospital administration will play a role in decisions made about my sister in your hospital. And while we saw new federal guidance released last week on disability and health care during Covid-19, I am uncertain how quickly it can impact what occurs provincially and locally for a population that remains so invisible in our healthcare system.
Now may not be the time to fix how we train health care providers or to redesign health care for people with disabilities in Canada. It is an opportunity, however, to acknowledge the harmful gaps that exist, and commit to doing better, one patient and their family at a time. As people with developmental disabilities and their allies, we are doing our best to maintain health and stay safely at home, and if we need to, to come to hospital as prepared as we possibly can be. We hope you can work with us in partnership, and help us help you.