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.
THANK YOU SO MUCH……….Gratitude to you for recording in script such significant acknowledgement and understanding and love in this matter. It is a blessing you are able to express concerns, feelings, and encouragement to the Medical profession for your Sister and so many Exceptional Loved Ones. You are a wonderful sister and your family is blessed. May we all learn along this challenging journey and advocate for our Exceptional Loved Ones. We have asked so much of our Loved Ones Caregivers and this message supports their efforts to advocate as one voice. Thank You so much.
Your words are so poignant and I thank you for speaking for them, they are beautiful souls that bring such joy and pain to our lives and when they are happy everything is incredible but when they aren’t and they can’t advocate for themselves and people don’t understand them it can be hell and painful. Your words made my heart hurt and happy. Quad we all have to advocate for them.
Thank you Yona, for the gift of your writing and allowing us a glimpse into your sister’s valued life. I can only hope that my own children feel this much love towards their brother when he is grown. And for doctors everywhere: your patients are someone’s loved sister, brother, daughter, son, friend.
Your letter was one of deep caring, love and obviously much
concern. I immediately thought of
my daughter and how totally
frightening it would be for her!!!
Thank you Yona for all that you do
to help our children and enlighten
our healthcare community.
Yona, thank you for your compassionate and clear advocacy message, which applies to so many vulnerable people, also those with dementia. We will be discussing the topic of developmental disabilities in medicine – including your reflection – with McMaster’s first year med students next week – so yes, now is a good time to train healthcare providers to best look after people like your sister. 🙂 Thank you!
Thank you Yona, for sharing from the heart. Your personal story infused with such spirit of compassion for your sister, grounded in the sobering knowledge of the realities of our health care system right now is exactly what we all need to hear. A call to keep the humanity at the forefront of all we do.
Thank you so much for your post.. You have put into words what I have been feeling and I appreciate the way you presented it all. May God bless your service to all the developmentally delayed, who are all around us.
Thank you. A powerful message for sure. I hope we can begin to think of people with disabilities and all vulnerable folks differently after this pandemic. I speak as a Mom of a 28 yr old with a genetic disorder, and a nurse who has worked long term care for 18 years.
This article touched me!
We need to advocate for those who can’t speak for themselves and, I’m glad you did that in such a simple, yet poignant way.
Thank you !
Beautiful, tears in my eyes as I read this and think of my patients with developmental disabilities, physical disabilities and my own son…..hope that caregivers at hospitals understand and also don’t judge how much quality someone’s life has without knowing them as a whole. Thank you