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Thoughts on health and care

The history of institutional care in Canada is complex, and it is now, thankfully, a new story of better hospitals, community group homes and advocates who work tirelessly for equity and dignity in living together.

Thoughts on health and care

One day, in 1957, six year old Jeff noticed his little sister Molly was suddenly gone. Jeff’s parents would not answer his questions, and Jeff lived for 47 years without knowing what happened to Molly. Unbeknownst to Jeff, Molly was born with mild disabilities, and before she turned three Molly was sent to live at Oregon Fairview Home, an institution for “feeble-minded,” “idiotic” and “epileptic” children. Not until his parents died did he find his sister again.

Family secrets
Jeff found Molly when she had transferred from the institution to a group home, and he enjoyed 10 years with Molly before she passed away in 2014. He struggled with understanding the family’s secret and made a documentary entitled Where’s Molly? Though his mother would not talk about Molly, Jeff learned another family secret. In 1957, Jeff’s father tried to visit his daughter, but little Molly became so upset after his visit that staff asked him not to return. Still determined, Jeff’s dad formed a clown troupe called the Astoria Clowns; he and his clown colleagues entertained children – and regularly visited the Oregon Fairview Home. Jeff’s dad was able to be with Molly, albeit in disguise.

In past years, doctors believed institutional care was in the best interest of the family. It was quite common for doctors to encourage parents to send away their disabled infants and children. Sadly, some families were so overwhelmed or ashamed that their institutionalized child became a secret never to be shared. Aside from the discussion about quality of life with institutional care and how society considered the sick and disabled at that time, I wonder what would have changed had Jeff’s parents shared with him the decision to place Molly in the Oregon Fairview Home.

Family memories
My mom was six years old in 1951 when her brother John was born with special needs. With no home health care support available, John moved to the Ontario Hospital for Retarded Children at Cedar Springs in 1961. Unlike Jeff, my mom and her siblings were aware of their brother, enjoyed his visits at home, and later, took their own children to visit John. I remember walking the halls of Oxford Regional Centre to visit my uncle who had an uncanny sense of balance when he sat on a swing.

The history of institutional care in Canada is complex, and it is now, thankfully, a new story of better hospitals, community group homes and advocates who work tirelessly for equity and dignity in living together. The post-war experiences, most significantly beginning in 1950, illustrated the long-term effects of trauma, loss and separation on children and families and contributed to a shift in thinking about family and healthcare.

Today, our healthcare system in Canada now practices a global philosophy referred to as Family/Patient Centred Care. Though the medical professionals have expertise and wisdom, the intention is to create a team approach with families and their loved ones.

Family-centred care
There is no perfect system of health, but one that strives to create a family-focused approach, where the client or the child is the focus of the care with family, friends and medical staff working together, is one that is worth the work. I am a part of the Canadian Family Advisory Network, and my hope is that the quality of care and support will continue to improve, particularly for those who live with mental health issues and need a safe place to thrive.

Every six months, Rachel and Janneke visit their general pediatrician at McMaster Children’s Hospital. Though the focus is their health and wellbeing, I appreciate the attention Dr. Roy gives our whole family. I am thankful that we have a team of doctors who not only ask about the health and wellbeing of Rachel and Janneke, but they ask about our support system. They ask how the family is coping and what we hope for in the future. There is powerful medicine in listening ears, collaborating heads and compassionate hearts.  

The parts of the body will not take sides. All of them will take care of one another.
If one part suffers, every part suffers with it. If one part is honored, every part shares in its joy.

– I Cor.12: 25-26

About the Author
Thoughts on health and care

Sara Pot, COLUMNIST

Sara Pot is a new columnist with CC. She lives in St. Catharines, Ont. with her husband, four daughters and their golden doodle; she welcomes conversation and feedback to thepotfamily@gmail.com.