Society

One mother's human-rights victory over hardline COVID restrictions

Her son has an intellectual disability and needed to see, hear and touch his parents. But rigid interpretation of public health measures kept them apart.

When Pamela Libralesso reunited with her son last August after six months apart, she could tell he wasn’t himself. His brow was furrowed. He wouldn’t make eye contact. He walked right past his dad, his favourite person in the world.

When he’s himself, her 15-year-old, who is non-verbal and has an intellectual disability, is cheerful, social and “brightens any room,” Libralesso says. “He is just a very easy-to-please joy to be around. He loves his family. He loves all people. If you are kind to him, he loves you.”

After half a year of fighting to see him under his group home’s strict new visitation rules aimed to stop the spread of COVID-19, it was heart-breaking to see J.’s sadness, his mother says. (She requested that we not publish his name, to protect his privacy.) His demeanor said: Where have you been? What took you so long? “There’s zero way to explain COVID to him, to explain a virus, to explain public health measures,” she says. “It took a while for us to get him back. Clearly, he had suffered some impact from the isolation.”

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Today J. is his usual, bubbly self, a teenager who eats like a horse, is obsessed with cars and can’t get enough of the swimming pool on summer days. His parents pick him up on weekend mornings from the group home—where Libralesso says he receives “excellent” care—and drop him back off at bedtime. She is hoping that their family’s recent victory at the Ontario Human Rights Tribunal will keep them from ever being separated again.

In the very early days of pandemic lockdowns, on March 13, 2020, Ontario’s Ministry of Health recommended that congregate living settings allow visits only to dying or very ill patients, or ill children in live-in treatment settings. Empower Simcoe, which manages J.’s government-funded home along with several dozen others, took a strict interpretation of that guideline.

At first, Libralesso accepted the ban, thinking it would probably last only a few weeks. But when it became clear that restrictions could be in place for a long time, the registered social-service worker sprang into action. She began communicating with her local public health region, and the provincial Ministry of Children, Community and Social Services, to see if exceptions could be made for parents separated from their children.

In her lengthy back-and-forth with those authorities and with Empower Simcoe, as detailed in the March 31 tribunal decision, it became clear that Ontario’s recommendations were not binding, and that group homes could use their discretion to interpret the policy. Still, the home followed guidelines to the letter.

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At the end of May, the ministry changed its definition so that parents of any child—not just an ill child—could be allowed to visit congregate settings. But because physical distancing measures were still in place, that was still unworkable. Empower Simcoe offered J.’s parents opportunities to visit using video chat software, or in person with a gate between them, since he is not able to understand and keep to physical distance rules. It was a wrenching decision, but Libralesso decided these types of visits would only be confusing and harmful to J., since he communicates predominantly by touch. “It would be like seeing an animal in a zoo—for him, and for us.”

Despite more bureaucratic back-and-forth, which further clarified the group home’s prerogative to relax the rules using its discretion, it was the end of August—when Ontario re-opened congregate living settings to visitors—before the facility allowed what Libralesso regards as a “meaningful” visit.

Working with ARCH Disability Law Centre, Libralesso had filed a complaint with the human rights tribunal in June. In July, the heavily-backed-up tribunal moved to expedite the case, something that’s “extremely rare,” says lawyer Jessica De Marinis. Despite regular visits resuming in August, Libralesso decided to follow through with hearings in November and December as a sort of “insurance” that J. wouldn’t be kept from his parents again.

In her March 23 decision, adjudicator Jennifer Scott determined that Empower Simcoe failed in its duty to provide accommodations for J. on the basis of his disability, and that this constituted a prima facie case of discrimination. She awarded the family $10,000 in damages and ordered Empower Simcoe to develop an accommodation policy for children under 18.

The group home took no steps to assess the actual risk of the visits, the decision states, offering no evidence that physical distancing had to be maintained in this particular setting—something that the area’s public health officer, in emails to Libralesso and Empower Simcoe, said could be relaxed as long as other preventative measures were in place. J. lived in a residential house where only one other child was receiving care at the time, and the other child’s family was prepared to join a “bubble” with the Libralessos. Over the course of the pandemic, Libralesso learned of no COVID-19 cases among staff.

Scott was careful to assert that the respondent in this case was operating in “an unprecedented time,” and “doing its best to keep its residents and staff safe.” She noted that this was the tribunal’s first merits-based human rights ruling during the pandemic, and that the unique facts of other cases could lead to different conclusions. But she was categorical on one point: “Human rights protections do not go away in a pandemic.”

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De Marinis and her co-counsel on the case, Mariam Shanouda, say that that assurance, and the fact that the decision put service providers’ rights obligations into the context of the pandemic, could be helpful to other families in similar situations.

Empower Simcoe’s request for a “reconsideration” of the decision was denied, but the company has filed for judicial review. With the system backed up due to the pandemic, the timeline for the court’s decision on whether or not to weigh in is unclear.

A statement from Empower Simcoe’s CEO, Claudine Cousins, says an accommodation policy for kids under 18 has been developed, and its current visitation policy has been endorsed by local public health officials and the province. “Throughout this pandemic, and always, our policies and procedures are developed with a view to health, safety, human rights principles and integrity of the person,” Cousins says. “Our commitment to these principles remains unwavering.”

The province is “aware” of the decision, according to social services ministry spokesman Daniel Schulz. Essential visits to congregate settings that maintain both residents’ safety and their “applicable legal rights” are allowed in the province “wherever possible,” except in cases where local public health authorities are managing an outbreak, he said in a written statement: “Service providers are strongly encouraged to consider the importance of the principles of emotional well-being and flexibility for their residents, in addition to efforts to reduce infection risks.”

So many people reached out to her upon learning about the case that Libralesso was able to create a network, a kind of support group, for families similar to hers. She hopes her efforts have opened their eyes to the protections that exist in Ontario and can very much still be exercised during the COVID-19 crisis. “I was fighting for everybody,” she says, “not just for my son.”