BLOG: We, Too, Are Essential
Monday, May 11, 2020

As you read the following family-written blog post, please consider signing the online petition to ensure that people with disabilities can have a support person(s) in health care settings like hospitals, doctors' offices or other medical places.

By: Nadine Hiemstra

As a family caregiver, the idea of my sister needing to seek medical care in these times fills me with an unusual amount of dread.

It wouldn't be unusual for her to seek medical care. While she's overall a healthy woman, she has had complications with her health and been hospitalized for pneumonia and digestive concerns on more than one occasion. While she certainly wouldn't say she loved going to the hospital, we always had an advantage in the past; one of us could be there with her.

Now, in a time of COVID-19, things we took for granted are no longer guaranteed. When the long term care facility the houses my grandfather shut down visitor access, I understood. A single case of COVID-19 in his residence would be devastating to him and his peers. When my grandmother's hospice closed off visitor access to all but those at the very end of their life, my heart broke even as I understood the need to mitigate risk; how could it be that in these last weeks of her life, she would be alone?

I listened on the phone as she struggled with technology to stay connected. While the hospice nurses and staff were willing to assist and treated her with so much care, they could not be there at every turn. She lost touch with family and friends from afar, and struggled to focus on phone calls. Her communication abilities waned, and we relied on our faith in the hospice staff to be able to help her where we could not.

We waited until they called us back in, at the end of her life, so we could say goodbye to her in person before she could no longer speak.

And I imagined the devastation that would happen if my sister ever found herself in this situation, cut off from friends, family, and technology in an unfamiliar medical institution. What it would feel like to rely on strangers to ensure her well-being and facilitate connection to family. Would they see her value as I do?

In the news, I hear stories of staff stretched too thin to make the necessary accommodations for their patients with disabilities. Their stress translates to fear, and in fear they make decisions that cause distress and put patients at greater risk.

In Toronto Grace Hospital, staff took away Tommy Jutcovich's iPad (his only tool to communicate) out of fear that it was being used as a surveillance tool. He is only allowed to use it one hour a day, and his wife is not allowed to visit.

In BC, Ariis Knight was admitted to hospital and denied support after the hospital determined that no communication assistance was necessary. Ariis communicated primarily through facial expressions and eye movement, a system that took her support staff two years to learn properly. She was put on end-of-life care and died within days, without ever seeing her supports or family.

If my sister needs care, will I be allowed to accompany her? Will hospital staff recognize her developmental disability and allow me to stay? Or will they ask me repeatedly about the validity of my presence and pressure me to leave, as has happened to others? Even worse, will they go so far as to deny me entrance altogether at the hospital?

There are so many amazing, kind and generous staff in medical care, and it's nice to think that it would work out okay. But the truth is that it hasn't for so many others. My sister communicates fairly well, and as an adult, could be required to make do without a support. But she also has an easily identifiable developmental disability that might encourage staff to make an exception and allow us to be there for her. I weigh these things. I wonder – and worry – about the decisions that might be made on our behalf, without our input. And I think on the families that have already been at this point, and found a wall of bureaucracy between them and their loved ones.

The only way to be assured that I and other families will not have to face these fears in reality, and to support the families already at this point, is to advocate. We can ask for clarity, and a unified policy across our province and the country. Canada needs to recognize families and supports as so much more than simply visitors.

We are essential partners in care, working in collaboration with our healthcare systems to make sure that all Canadians have their health care needs met. But we have yet to be granted legitimacy through policy, and we need that legitimacy now. Not later, or when all this is done. These questions cannot wait. They are urgent, and caregiver access is of immediate and grave concern.

Please join us – sign this letter to petition for a unified policy in health care regarding supports and caregivers. Please call your MPP and MP, write a letter to your premier and prime minister, and let them know who we are.

Tell them that we, too, are essential.

PETITION: Ensure that people with disabilities can have a support person(s) in health care settings.

Articles on this Topic

COVID-19 highlights existing barriers for Canadians with communication disabilities. CTV News.
LEVY: People who can't communicate treated terribly during COVID-19. Toronto Sun.
Woman with disability dies alone at B.C. hospital amid COVID-19 restrictions. CBC News.
Hospital bans disabled patient from using an iPad calling it 'surveillance tool'. Toronto Sun.
Open Letter RE: Essential Support Person(s) for Patients with Disabilities. Disability Alliance BC.

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