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Everyone Must Have Access

MYTH - Presence of Essential Care Partners is nice to have, but doesn’t impact quality of care

FACT - Impact of restrictive family presence policies has demonstrated risks to patient care, safety, and outcomes, including increased medical errors and inconsistencies in care, especially for those who are medically complex or vulnerable.[1,2]

Pamela is a mother and essential care partner to her son who has multiple complex disabilities. During the pandemic, Pamela has fought to be allowed to be with her son as an essential care partner. Read Pamela’s story.

Everyone Must Have Access

My son is 15, a sweet and joyful child who has multiple complex disabilities. Just before COVID-19 hit Canada, he experienced a seizure that caused an injury to his lip. His caring group home support staff took him to the hospital at our request, where we raced to meet them. Once we arrived, he had been seen by an Emergency Room physician, who advised the group home staff that “it would take too many resources to stitch his lip and we should just let it heal on its own,” despite the fact that it was painfully split open. Questioning the need for additional resources, I was told that because he wouldn’t stay still for the stitches they would have to sedate him, which would require staff from other areas of the hospital. As caring as the group home staff was, they accepted the doctor’s assessment at face value and were prepared for him to be discharged. As his mother and essential care partner, I challenged the advice and asked for a second opinion, knowing that all too often people with intellectual disabilities are treated differently from their neurotypical peers; in school, in access to services, and yes, in healthcare.

Our second opinion yielded what I already knew; OF COURSE he needed stitches, just as any other child who presented with the same injury would receive. The “additional resources” were gathered, and because we were present and advocated on his behalf in a situation where he was unable to advocate for himself, he received the stitches that his younger non-disabled brother would have received without question.

I wonder what the outcome would have been if this incident occurred in April 2020, when I was considered “non-essential” to my son.

There is an intersectionality in this story between essential care partners, congregate care staff and the healthcare system. Everyone in a congregate care setting, and everyone who enters an ER, must have access to their essential care partners to ensure they receive the treatment and care they require and rightfully deserve.

  1. National Collaborating Centre for Methods and Tools. “Rapid Review: What Risk Factors are Associated with COVID-19 Outbreaks and Morality in Long-term Care Facilities and What strategies Mitigate Risk?” (October 2020).
  2. Cacioppo, John T., and Louise C. Hawkley. “Social isolation and health, with an emphasis on underlying mechanisms.” Perspectives in biology and medicine 46, no. 3 (2003): S39-S52.