Thank you, Senator Seidman, for launching this inquiry.

Honourable senators, for nearly 40 years, I had the privilege and responsibility of walking in and, most importantly, being able to walk out of prisons for children, men and women. I am sometimes asked by those preparing to visit prisons about what to expect, how to act, what to say.

What I suggest is what I was taught: Treat people the way you want your child, your parents, those you love to be treated because each person you meet in isolating and dehumanizing institutional settings is someone’s loved one, someone’s child, someone’s mom, dad, partner, brother or sister.

During the COVID-19 pandemic, my mom died the day before the first anniversary of her entry into an institution of another kind, one of many residential care homes in Canada. We lost mom following a nearly nine-year odyssey with dementia. Many of you, honourable colleagues, have now spent time together in prisons across this country — in meeting rooms, in segregation cells and speaking through meal slots in cell doors — hearing about appalling realities of voices being ignored and human rights violated, seemingly with impunity.

Too often as I went to visit mom, I found myself horrified by the parallels with the total social isolation that exists in our so‑called care homes. A little less than two weeks before mom left us, my daughter and I were visiting her, and as we were on our way out, a woman I’ll call “V,” who was wheelchair-bound, propelled herself into our path. She pleaded with us to take her with us so that the man charged with her care and with my mom’s couldn’t hit her again. It was heartbreaking. We reported the situation and appropriate action was eventually taken, but we were left to wonder how long it had been going on. Other staff said mom and other residents seemed afraid of him, but because most had dementia, their reactions were ignored or considered not credible.

Madison and I could not shake the horror and pain of leaving V or my mom, her Nana, and all of the hundreds of other vulnerable residents.

I am sometimes overcome with anger, other times despair, as I mourn my mom. My heart breaks for my dad, as it did every day for the year he watched mom’s health deteriorate in the home. Pre-pandemic and once she was declared palliative, his vigils were daily. Most days he would feed her lunch and stay until dark, even when my sister or I arrived to get mom dinner, then undressed, bathed and ready for bed.

Many times toward the end of her days, a good day would be when mom woke up and opened her eyes. Still, for dad, that would be enough to put a smile on his face. He sat by the side of her bed, holding mom’s hand and recounting stories of their 62 years together.

I mourn the 81% of Canadians who died of COVID-19 in care homes. I mourn the many more who, like my mom, may not have contracted COVID-19 but died or experienced suffering because they were separated from their loved ones, and because of the deficiencies of care homes struggling to respond to the pandemic.

COVID-19 continues to tear through long-term care homes, exposing conditions that many medical professionals have rightly qualified as a humanitarian crisis.

I mourn and rage for those who remain trapped away in the privatized for-profit institutions that we call care homes. Despite the efforts of some incredibly dedicated and under-compensated staff, usually racialized women, too many are living and dying alone, without their families, without adequate care, without clean clothes or bedding, without food or water, isolated, undoubtedly terrified, most certainly afraid. Too many families and friends are left without contact and information, wondering what has become of them.

COVID-19 has laid bare decades of horrific profit-motivated short-sightedness bound up in long-standing sexist, racist and classist devaluing of care work. When it comes to the treatment that our aged and disabled loved ones receive in times of greatest need and vulnerability, this is not just a case of a global crisis catching a sector off guard. It is the culmination of years of abandoning people to neglect and indignity, to being discarded and to disappearing in a sector that too often appears to be trying to reduce human beings to numbers to crunch, to costs to minimize, and to files to manage.

As the Royal Society of Canada reminds us, poverty, racism and systemic inequality continue to dictate quality of life and quality of long-term care. Particularly as we begin debates about expanding access to medical assistance in dying, we must ensure that people are not placed in situations where they are considering medically assisted death due to a lack of resources or supports within the community or within long-term care.

Eight-five per cent of seniors want to age in place in their homes for as long as they can. Medical professionals see these types of models as beneficial and preferable, but too many cannot afford to pay for all the treatments they need, and for too many, home care is both unaffordable and inaccessible, or unattainable because of a lack of preferring those professions.

For those who cannot be cared for in their homes, Canada could look at the Netherlands and other countries where dementia villages and green care farms ensure that individuals can walk, explore, interact with others, carry out small household tasks, garden, care for animals, and access businesses and services run by those trained in dementia care. The first Canadian dementia village was recently established in Langley, British Columbia. At present, however, it is a private, consumer-funded resource, completely inaccessible to all but the most economically privileged.

Canada’s profit-motivated long-term care system relies on exploitive labour and devaluing of the workers who provide care. Cost-reduction efforts mean that personal support workers now provide 90% of direct care to residents of long-term homes, including work that was previously done by nurses or physical and mental health therapists.

Many care workers receive little formal training, the lowest wages in the health care sector, often minimum wage, and rarely any benefits. Work is usually casual, part-time or otherwise precarious. They face chronic short-staffing and heavy workloads, with 65% of personal support workers reporting that they are allowed too little time to properly complete care tasks. Too many have to work two or three jobs to make ends meet, a physical and health impossibility during this pandemic. Women, in particular racialized women and newcomers to Canada, make up 90% of Canada’s personal support workers.

As the Royal Society of Canada says, “we must solve the workforce crisis” with the federal implementation of national standards and transfer funding to ensure full-time work, better pay, benefits, sick leave, training and mental health supports.

Privatized and profit-driven care harms both workers and those who need support. It shifts the focus away from human interaction that prioritizes quality of life to standardized lists and tick-box monitoring that emphasizes mechanistic and expeditious movement from one person or task to the next.

Such inhumanity breeds the horror stories with which we are now all too familiar, from widespread neglect, to the misuse of anti-psychotic medication to manage those with dementia, to institutional risk management policies that needlessly confine and disable otherwise ambulatory people to wheelchairs versus other means of preventing falls.

Canada has also failed to address the personal, emotional and economic burdens for family and friends who, whether by choice or necessity, step in to provide unpaid care. Nor have we reckoned with the systemic inequality associated with the fact that this work continues to be undertaken mostly by women.

In a recent essay in The Guardian, a woman who cared for her terminally ill mom noted how the pandemic had renewed interest in guaranteed livable income as a measure that could create essential flexibility for those providing care. She said:

Covid-19 has opened our eyes to what’s possible — to the many ways in which we could reimagine our society and economy to put care at the centre.

Honourable colleagues, now that our eyes are open, let’s not allow them to again be averted or otherwise blindered.

Despite some excellent individual care providers, for many of those with dementia, like my mom, it is too often a cruel pretense to call the institutions where they are housed “care homes.”

Twenty-five per cent of those in federal prisons are classified as seniors. Of this group, 99% are living with a chronic condition such as arthritis, cancer, multiple sclerosis, dementia, Lou Gehrig’s disease or the effects of a stroke, for which they are not receiving medical treatment that they need. Worse still, their conditions are intensified by the additional trauma they experience on a daily basis.

How can we in good conscious allow people with these conditions to sit in cells indefinitely? I urge you, honourable colleagues, to imagine how a prisoner with dementia would experience strip searches, pepper spray, physical restraints, and solitary confinement — or structured intervention units, if you prefer.

When a person is told to remove all of their clothes in front of an armed person in uniform, or pepper sprayed for refusing that direct order, or one to lock up, how do we know if they even understood what is going on? We know all too well the stories of so many who, if they attempt to question or delay responding, face forcible interventions, injections, and the cutting or ripping of clothes off their bodies. Imagine how this is perceived by someone with dementia and how detrimental it is to the mental, physical and emotional well-being of all who are institutionalized.