Thank you, Mr. Chair.

Distinguished members of HUMA, thank you for allowing me to participate in the valuable work that this committee has been tasked to undertake.

As you know, I'm Mary Oko. I'm appearing before you today as a family member whose mom is currently at Copernicus Lodge, a long-term care home located in Toronto, Ontario. I'm also the chair of the Family Council, representing the families who have loved ones living in the home. My mom, Wanda Oko, is 95 years old, and has advanced dementia. I come before you to share how my mom and I were impacted by COVID and how I think we can make things better for our seniors moving forward.

I'll start by giving you some background.

During wave 1, my mom's home was fortunate not to have any COVID outbreaks.

During wave 2, my mom's home was hit pretty hard. Twenty-two residents died of COVID, and 100 of 200 residents and 85 of 300 staff were infected. Many residents are still suffering. Their health has declined; many who were once walking and independent now need walkers or wheelchairs or are bedridden. My mom is one such casualty. Before the lockdowns, she was walking; now she is bedridden, and during the lockdown she developed a stage 4 bedsore on her tailbone the size of a golf ball that will likely never heal. She didn't get COVID; however, she suffered due to the lockdown and other restrictions implemented under the guise of keeping residents safe.

Today I will share three concerns that have deeply affected me and my mom.

The first one is insufficient staff support for my mom. My mom has lived in long-term care for nine years. Because of poor supports provided, I felt compelled to hire, at my own expense, a care assistant who helped her with mental stimulation, exercise, feeding, and some outdoor excursions. In addition, I visited her twice per week to help with these and other activities, such as dressing and hygiene. Without this added support, my mom would not have continued walking or maintained mental engagement.

When COVID hit, my mom's care assistant and I were locked out of the home. When I was allowed back into the home in September 2020, my mom had declined because our extra care had not been available. She had stopped talking and she was less engaged. During the wave 2 lockdown, she received no access to exercise and was not able to leave her room. My mom is now bedridden and needs the assistance of a lift to move her from bed to wheelchair.

Assistance with feeding has always been an area where staff shortages are most obvious. Prior to COVID, my care assistant and I helped with my mom's feeding. During the wave 2 lockout, staff shortages and a lack of family support resulted in my mom eating poorly and a decline in her overall well-being.

As my second point, my role as a caregiver for my mom was not considered. Given there is a lack of staff to provide the level of care tailored for each resident, the staff always welcomed my help when I came to see my mom. They also valued that I could quickly identify issues that needed the attention of staff, or in some cases needed to be escalated to the doctor.

When COVID hit, I, like many families across Canada, was shut out. I was reduced to video meetings. At these meetings, my mom didn't acknowledge my presence, as she is better when I'm holding her hand and talking to her.

During wave 2, when families were once again locked out in the midst of our outbreak, as I mentioned earlier, my mom developed a serious bedsore. In pre-COVID lockdowns and restrictions, I could have had access to my mom and worked with the staff in addressing any issues she had. Families were not allowed to help when the home badly needed our support.

Lastly, my mom and I, as her power of attorney, were not properly consulted in decisions that impact my mom. We consider Copernicus my mom's home and not just an institution. Since my mom has advanced dementia, I have always been involved in the discussions and decisions relating to the level of care provided to her. COVID changed this situation. Especially, during wave 2 my mom and I as her power of attorney were not included in some of the decisions that were being made that impacted her level of care.

As an example, on December 14, two residents tested positive for COVID on my mom's floor, and then nine, again mostly on my mom's floor. This led to a decision to confine over 200 residents to their rooms 24-7, many in areas where no active cases existed. This decision was made based on meetings held between Toronto Public Health, the Ministry of Long-Term Care, Unity Health—which is the hospital that's partnered with our home—and the Copernicus management team. Residents and families of residents being impacted by such decisions were not given a voice at these meetings.

Any other patient in our health care system is given the benefit of consultation in decisions that impact their health. During COVID, as it relates to COVID, no such consideration is given to seniors living in long-term care or to their power of attorney. Why is this considered acceptable?

How do we fix this? Here are my four suggestions.

First is national standards for long-term care. Comparing what was happening in my mom's home with other long-term care homes in Toronto or in other provinces, I note there is a lack of consistency in how our seniors are cared for in many areas, including staffing levels, COVID testing, and IPAC controls.

No senior should ever feel that they are discriminated against based on the city or town they live in, the province or territory or the type of home they choose to live in. We are all Canadians, and our seniors should be treated fairly and equitably from coast to coast to coast.

Second, never lock out families. Families serve an integral role in the level of care provided to our seniors. We know our loved ones, and we can and do work with the homes to provide the quality of care our loved ones need. Until adequate staffing levels are addressed and funded, it is essential that families not be denied the right to improve the quality of care and indeed the quality of palliative care for our loved ones who live in long-term care. My mom and our seniors will always need their family for love and support.

Third, raise the profile of family council. During COVID, the Family Council at Copernicus Lodge was a strong voice speaking for their residents. The Family Council pushed for the resumption of regular bathing and showering, demanded increases in mental stimulation and activities and so much more, but family council members are unpaid volunteers, and it is a real challenge to attract and retain members, especially when we are not listened to by well-paid management and health care agencies.

Lastly, a resident voice at the table is needed. In any discussions that impact the health and well-being of the residents, their voice and/or the voice of the power of attorney who represents the resident needs to be included.

I beg you to never silence my mom's voice.

Thank you.

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