When Care Is a Matter of Life and Death

Karmen McNamara saw the writing on the wall about COVID-19 three weeks ago.

McNamara is staff manager of the Kieronator Society, a small non-profit set up to deliver care and services to Kieron Forrester, a 32-year-old man with spastic cerebral palsy who lives with his elderly parents and requires round-the-clock care.

Run by what’s known as a microboard — at least five family members and friends of the individual who requires support who determine the services needed — the Kieronator Society receives funding from Community Living British Columbia (CLBC) for Forrester’s care.

“I’d been watching what was going on in Italy and in Spain,” said McNamara.

“I could see that the sooner that we acted, the safer everyone would be because otherwise it would be very likely that one of our employees would become infected and transmit it before it was obvious that they had symptoms.”

The society had eight part-time employees who provided care, several going to school or working in other service or caregiver jobs part-time.

On March 11, McNarama changed that. Her plan, created in collaboration with her staff and Forrester’s parents, drew on her 15 years of experience working with people with disabilities.

But the society didn’t have support or direction from CLBC on what it should do as the pandemic hit.

McNamara fears that means other care providers are not prepared for COVID-19.

“We started very early,” she said. “And I was quite frustrated with the other organizations that are unable or unwilling to act quickly.”

‘He can’t get COVID’

McNamara started working on a plan for care under COVID-19 on the morning of March 11. It was in place that afternoon.

Eight part-time employees were replaced by two full-time employees working 12-hour shifts, serving as both house cleaners and one-on-one caregivers. The cleaning schedule ramped up from one to two deep cleans per week, as well as constant daily disinfection.

McNamara, whose life partner is immunocompromised, is working reduced hours and self-isolating at home. She is the only backup if an employee gets sick or needs a break.

“My job description four weeks ago was ‘keep Kieron safe and keep Kieron integrated into the community,’” said McNamara.

“My job description today is ‘he can’t get COVID.’ Because, to be morbid, he gets COVID, he has lung problems, he has a severe disability: if they have to make a choice on who to ventilate, they probably won’t choose him.”

McNamara feels confident in the system she implemented to care for Forrester during the pandemic. So confident she’s sharing her cleaning spreadsheet, designed specifically to reduce the likelihood of COVID-19 contamination in the home, on Facebook.

“It’s a very detailed list of what you should be sanitizing constantly. In our house, we do it twice a day. Other places are going to want to do it more,” she said, adding she has become “draconian” about cleaning since March 11.

“It’s not that these things are complicated, it’s just that it’s easy to miss them if you don’t have a list.”

While she cannot legally control where her workers go in their off hours, McNamara has instructed her employees to stay home when off work, only going out for groceries. Any employee who goes elsewhere will not be allowed to work for two weeks.

Running short of needed supplies

Alanna Hendren is executive director of the Developmental Disabilities Association, which operates group homes and other support services for people with developmental disabilities in the Lower Mainland.

“We use universal precautions all the time so this is not much different,” Hendren told The Tyee via email about their cleaning schedule. She said the association gets all its health information from Vancouver Coastal Health and Provincial Health Officer Dr. Bonnie Henry.

“We also have a contract with a retired Health Services For Community Living nurse who has just added COVID to her workload. But again, most agencies do not have a nurse and would have little chance of getting one now.”

So far, except for one false positive last week, Hendren says none of the association’s employees have tested positive for COVID-19.

Hendren’s main concerns, however, are their dwindling supplies — including gloves, masks, and cleaners — and the lack of backup should staff start getting sick.

“We had an emergency supply so we are very lucky, but if people start getting sick, we will run out and there will be none to purchase based on global demand,” she said.

“If staff start getting sick, we have no staff to work with the many group home residents who will also be getting sick. The staffing problem in community living is much worse than in health care because our pay is so much worse.”

On average, residential caregivers make $43,000 annually in B.C.

Gaps in CLBC communication

Community Living BC continues to communicate with families, clients and service providers via notices posted to their website. The most recent notice for service providers, posted Tuesday, advised residential facilities to identify which clients could be moved home with family to ride out the pandemic, as well as which staff can be spared to deliver services to clients in their own homes.

The notice also mentions a Community Living conference call for service providers struggling to implement these changes.

This notice wasn’t helpful for Hendren, who said none of their clients can go live with family.

The information provided is also “contradictory,” Hendren said. After speaking with Vancouver Coastal Health, she learned entering people’s homes to provide services would risk spreading the disease without the use of protective equipment — which is in short supply.

“This is a health issue so, in my opinion, CLBC, whose job is to fund our services, needs to stop talking about what we should do, because they are not health or even service delivery experts,” Hendren said in an email to The Tyee.

“Instead they should do their job and focus on funding, which they’ve said very little about. They should reinforce public health messages.”

Inclusion BC, a provincial disabilities advocacy organization, has more praise than criticism for Community Living BC right now.

“The number one support I see coming from them right now is giving increasing flexibility to service organizations to use their resources more creatively, to be more person-centred and direct supports to where they’re most needed,” said Karla Verschoor, Inclusion BC’s executive director.

CLBC has also solicited questions and concerns from individuals and families who need support, and hosted a conference call on Friday, March 27 where Social Development Minister Shane Simpson and other government staff answered questions.

Verschoor has also heard from people who have taken their family members out of residential facilities to care for them during the pandemic, which will help preserve resources for clients who have nowhere else to go.

Nevertheless, the pandemic has worsened existing vulnerabilities in the care system, she said.

“I sure wish at this point that we had an established medical health director as we had in previous years,” said Verschoor, speaking generally about the disability support sector. “There is a heightened awareness at this point of some of the real limitations to access of medical supports for the group of people we care about and represent.”