As the province scrambles to contain the COVID-19 crisis in long-term care homes, disability advocates fear their sector could be next in the pandemic’s path of destruction and the “window is closing” for decisive action that could spare them from similar tragedy.

In the long-term care industry, the ingredients for disaster were baked in from the start: A deadly and infectious virus, buildings full of vulnerable people, and a highly-mobile workforce for whom close contact is part of the job description. But these risk factors are also inherent in “congregate” living spaces for people with disabilities and advocates say there is an urgent need for coherent plans aimed at protecting these vulnerable people.

While there is still time to take proactive steps to prevent widespread tragedy across Ontario’s disabled community, “that window is closing,” says Lori Holloway, CEO of Bellwoods Centres for Community Living.

“We don’t want to be the next long-term care scenario, where we’re dealing with mass outbreaks,” says Holloway, whose organization operates six supportive housing sites in the GTA, and helps people with disabilities live independently. “It’s not the time to be critical but it is the time to say there’s a group here that we think has been forgotten.”

While congregate living facilities for people with disabilities tend to be smaller than long-term care homes — and most residents are not elderly — they do cluster people with health complications or underlying illnesses that put them at heightened risk of deadly infection.

People who are disabled, both living in congregate settings and at home, are also highly dependent on personal support workers (PSWs), an underpaid workforce that is largely forced to work multiple jobs at different locations. While the province has ordered workers at seniors’ homes to choose a single workplace to limit the virus’ spread, a similar directive — or specific commitments for supplying personal protective gear — has yet to come for PSWs in the disability sector.

Work is now underway on a residential staffing directive that will limit “staffing flexibility in order to control infection spread,” said Palmer Lockridge, a spokesperson for the Ministry of Children, Community and Social Services (MCCSS), in an email. But he adds that “our goal is to strike the right balance between strong infection control measures to protect individuals and staff, and adequate staffing flexibility to ensure continuity of service from people who are highly dependent on others for their health and safety in everyday living.”

Meanwhile, for some facilities shared by people with disabilities, COVID-19 has already crept in. To date, there have been 33 outbreaks reported by provincially-funded facilities for people with developmental disabilities, affecting 130 residents and staff, according to Lockridge. The threshold for declaring an outbreak is one confirmed case. “We are monitoring this situation and working closely with our partner agencies so that their immediate needs are being met,” he said.

“We will do everything we can to protect our most vulnerable citizens because we all know they are most at risk during this outbreak,” he said in an email. “We’re in constant contact with our agency partners to understand their needs as this situation evolves.”

Among the group homes where COVID-19 has already erupted is Markham’s Participation House, a home for people with developmental and physical disabilities where a massive outbreak has infected at least 37 of the home’s 42 residents. Two have died and a dozen staff members have also been infected.

“I am hopeful that Participation House is a wakeup call for every single home out there,” said Laura Meffen, whose 21-year-old daughter was among the infected residents at Participation House. “I am hopeful that the government is going to now understand the need.”

But addressing the needs of the disability community is perhaps even more complex than shoring up protections for long-term care facilities or retirement homes. The community is diverse, spanning a range of disabilities and age groups, and living arrangements are varied. There are congregate living facilities or group homes, where residents might share bedrooms or communal spaces, and independent living housing sites, like Bellwoods, where people are clustered but live in apartment-style units and receive daily supports from PSWs.

Many people with physical or intellectual disabilities are also cared for in the community by family members or employ their own PSWs — including approximately 150 in Ontario who are on ventilation.

Complicating matters is that responsibility for the disabled population is spread across different ministries. An organization like Bellwoods is a transfer payment agency through Ontario Health, the newly-created “super agency” for delivering health care in the province. But group homes like Participation House fall under the purview of MCCSS, which oversees the “developmental services sector.”

The MCCSS recently announced new measures for its sector, including emergency childcare for workers and enhanced COVID-19 testing. A new, $40-million relief fund will also help offset extra costs for additional staffing, personal protective gear, physical distancing initiatives, and transportation to minimize infection risks but it’s being dispersed across several high-needs residential facilities, including women’s shelters and youth homes.

In the absence of clear guidance or support aimed at the disabled community, many agencies and facilities have been working on the fly to figure out their own solutions. In the mad scramble for PPE, those in the disability sector are competing with not just the rest of the world but also better-resourced sectors in their own community.

“The entire health care system has had challenges around PPE but I do feel that our sector often gets left behind,” says Deborah Simon, CEO of the Ontario Community Support Association.

There is also a lack of direction for PSWs who work in the disabled community, where the need for these crucial workers is high but wages are low. The current pay gap between PSWs who work in long-term care versus home and community care is about $3.50 an hour, according to Simon.

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While restricting PSWs from moving between different workplaces would help prevent further viral spread to vulnerable people, a concurrent worry is that doing so could trigger an exodus of workers from the disability sector, where their compensation is lowest but the work they do is sometimes a matter of life or death.

“We’re kind of holding our breath day to day to see if we do get work refusals or people asking to put their status on hold,” said Holloway, who employs about 300 PSWs, three quarters of whom are part-time employees. “We have clients who are in some cases non-communicative, on ventilators, on oxygen, on life-sustaining electrical powered equipment. They could be completely dependent on us for their activities of daily living.”

Without specific guidance for facilities like hers, Holloway is trying to follow COVID-19 protocols developed for long-term care facilities, but many of them are difficult to adhere to because her housing sites don’t follow a medical model.

For example, some protocols require an on-site medical doctor, which her organization doesn’t have, so she is now working with the Ontario Medical Association to try and cobble together a stop-gap solution.

Her housing model also means her residents are tenants, covered by the Landlord and Tenant Act. So if there were an outbreak in one of her buildings, a quarantine would be much more difficult to enforce. “I can’t necessarily put a supportive housing building on lockdown.”

Other types of congregate living facilities have also taken proactive steps, ahead of explicit direction or guidance from the province. At North Yorkers for Disabled Persons, executive director Cathy Samuelson has been “terrified” for her residents since first reading about the COVID-19 pandemic. Her facility has been on lockdown since March 10.

The 10 residents at North Yorkers, aged 24 to 65, have complex physical disabilities and are also non-speaking or speech-impaired; they need extensive daily assistance with everything from dressing and eating to bowel and bladder care. If any had to go to the hospital, they would need a facilitator to accompany them so that they could communicate. Some residents are also prone to respiratory issues, including one individual who was hospitalized for pneumonia for a week shortly before the pandemic hit.

“An outbreak here would be devastating for us,” Samuelson said.

At Community Living Central York, which operates 16 group homes for people with intellectual disabilities, they have also been racing to get ahead of the outbreak: scrabbling together PPE, cancelling day programs and raising the hourly pay for PSWs while also overhauling schedules so workers are only entering a single home.

But these steps are costly and the organization is making sacrifices in other areas to ensure these proactive steps are taken, said Suzanne Conner, vice-president of the board of directors.

“We don’t have a lot of direction on who’s going to help us from the government but we know it’s the right thing to do,” Conner says. “It is our duty as a society to protect those who are vulnerable and these guys are as vulnerable as it gets.”