When media reported that nearly all residents at a Participation House facility in Markham, Ont., had caught COVID-19, it put congregant living facilities on the radar of Canadians for the first time in the pandemic. It was just after the April 2020 long weekend, and it was the first time that residences for disabled adults entered the spotlight; before that, the focus was squarely placed on long-term care.
Megan Linton, a disability researcher and advocate was “shocked and frustrated by the lack of coverage” about disabled adults from the start of the pandemic. She thought that news about outbreaks at Participation House would trigger widespread attention to these facilities, but then “it just never started. It was so frustrating because no one took it up even though so many disabled people were talking about this.”
The outbreak at Participation House was significant and deadly. The facility is set up in six pods, where each resident has their own room and shares a common area with six or seven others. To staff this, Participation House’s funding limited it to hiring just eight personal care workers to help the residents of all six pods. Depending on the needs of each resident, this put each worker into regular contact with many patients and other workers during a single shift. Participation House says it followed government guidelines and had protocols in place for dealing with outbreaks, but the measures could not stop the spread of COVID.
When the outbreak was declared, Participation House was plunged into a staffing crisis, as many were also infected with COVID-19, or forced into isolation because they had been exposed to COVID-19. Six residents died and nearly all of the 42 residents were infected with COVID-19, according to York Region Public Health.
The facility would have two additional outbreaks, though smaller, the most recent declared this past Tuesday. But where outbreaks like these common?
Early on, it was clear that COVID-19 infection was more deadly for disabled adults. But up until May 2021, the best estimate that I had come up with through nightly COVID-19 death report counting was that there had been 20 congregant care setting deaths from COVID-19: 18 residents and two staff.
That number was very low; these facilities were not included with daily long-term care updates. Thanks to a question tabled by NDP MPP Lisa Gretzky, at the end of May, Linton discovered that at least 69 residents and six staff died from COVID-19 in Ontario congregant care settings, deaths that hadn’t before been publicly revealed. Since then, the Ministry of Municipal Affairs and Housing confirmed one more resident death.
The world of congregant residential care in Ontario is a maze of ministries, municipalities, for profit housing providers and charities. It includes group homes, halfway houses, boarding houses and Children’s Aid Societies’ disability homes. They include forensic psychiatric homes, mental health group homes, addictions, treatment and sober homes and facilities for adults labelled with intellectual disabilities. There are also group homes for children, human trafficking survivor group homes and gender-based violence transition residences.
And while this list is long, these 70 resident deaths and six staff are only from three kinds of facilities: Homes for Special Care, residences for adults labelled with intellectual/developmental disability, and group homes and domiciliary hostels, so it’s likely that there are other deaths not represented in this figure.
Group homes have been completely forgotten during the pandemic, especially facilities for disabled adults, like Participation House. Residents of these facilities have complex care needs. Many residents were locked into their rooms as a pandemic precaution and kept away from close family members. One family took Empower Simcoe, a company that operates 41 group homes for disabled adults and children, to the Ontario Human Rights commission to force the facility to allow in-person visits. Fourteen-year-old Joey hadn’t seen his mother Pamela Libralesso for an excruciating six months, the CBC reported.
It wasn’t until June 9, 2021 that activities that include brief physical contact, like a hug, were permitted by the government to resume.
The 70 resident and six staff deaths come from facilities that fall under three separate ministries: the Ministry of Health and Long-term care manages 73 facilities called Homes for Special Care, the Ministry of Child, Community and Social Services (MCCSS) funds approximately 2,500 residences for disabled adults, and the Ministry of Municipal Affairs and Housing funds 325 other group homes and domiciliary hostels located outside the City of Toronto, managed by each of Ontario’s 47 public health units. There are an additional 223 facilities in Toronto.
Homes for Special Care are for adults who have complex mental illness and are connected directly to a hospital setting. Linton argues that these facilities had the best COVID-19 protections. As a result, they seemingly also had the safest outcomes: 2.1 per cent of residents and 3.5 per cent of staff were infected with COVID-19, and one resident died.
Of the 10,000 developmentally disabled adults who lived in MCCSS facilities, 871 adults had COVID-19 infections and 34 residents died. Cases among staff were nearly double that of the residents, at 1,602 of 26,300 total. Five staff died, despite how many more staff became sick, a reminder of how deadly COVID-19 infection was for disabled adults.
Then, there are group homes and domiciliary hostels funded in whole or part by the Ministry of Municipal Affairs and Housing (MMAH). The MMAH reported that from June 8, 2020 when it started collecting the data until June 10, 2021, there had been 1,040 COVID-19 cases among 8,000 residents at 90 facilities funded at least in part by the ministry. Two hundred and thirty nine of these infections were among staff, and 35 residents died.
The Ministry’s numbers do not include any from Toronto. According to Dr. Vinita Dubey, Associate Medical Officer of Health for the City of Toronto, 28 people have died in congregant settings in the city, but that number includes nine shelter deaths and one death in the Toronto East Detention Centre.
Linton says that with a waitlist of about 20,000 people for MCCSS-funded facilities, many disabled adults live in MMAH-funded facilities as they wait for a spot to open up.
For most of the pandemic, all that has been disclosed publicly about outbreaks in congregant care/group home/congregant other settings is from Public Health Ontario’s regular epidemiological summaries. They report that there have been 918 outbreaks in these facilities with a cumulative 4,941 cases. None of these disclosures include deaths, however.
Unlike the daily reporting from long-term care, there was no public, regular disclosure of how many people living in these facilities had died, or outbreak and infection information per type of congregant care setting.
Each facility received a different level of support depending on which ministry it fell under. Where Homes for Special Care residents were given laptops and room dividers, domiciliary hostels and group homes were mostly not. Linton pointed to one of the few ministry directives that was released to keep residents in domiciliary hostels and group homes safer as an example: residents should sleep head to toe, as the distance allowed between beds was 1.6 metres.
Linton blames the lack of action on an indifferent government that has felt little pressure to respond to questions. Media, she said, asked few questions about life in these facilities. And ministries didn’t proactively offer information up: despite issuing several media releases weekly, the MCCSS only issued a single press release about congregant care settings from May 2020 until today. The Ministry of Health didn’t issue a single media release about Homes for Special Care and the pandemic.
In 2016, a report released by the Ontario Ombudsman found that the conditions for homes for disabled adults managed by the MCCSS were unacceptable. The report made 60 recommendations, all that the MCCSS accepted in principle. But five years later, not only has little changed, but the pandemic has revealed that many of the problems that have long plagued these facilities were exacerbated the pandemic. From when the report was launched until March 2020, the Ombudsman received another 400 complaints about these facilities.
Linton argues that the early focus on long-term care as a location where elderly residents live obscured the fact that the residents were also disabled. Long-term care was not deadly because of the age of the residents alone, but because of the intersection of age and disability, a frame that was far too often erased when politicians and journalists discussed long-term care. Residences for disabled adults should have been at the heart of the discussion too. But they weren’t. They weren’t even included in Ontario’s Phase One vaccine rollout campaign, even though long-term care and retirement residences were.
“People don’t understand long-term care as being a place of disability,” says Linton. “This incredibly narrow vision has cost a lot of people their lives.”
“I hope that [news about deaths within group homes] results in the same reckoning that has happened in long-term care and the same anger towards the people who allowed his to happen,” said Linton. “But there hasn’t been that yet.”