An Ontario family has filed a human rights application to be deemed essential caregivers to their 14-year-old son who lives in a group home in the hopes they can visit him for the first time in more than three months.
Pamela Libralesso said she and her family have not seen their son since the COVID-19 pandemic began in mid-March when the province banned visits and short leaves.
Her son, whose identity has been withheld due to the application, has a rare genetic condition that manifests itself as developmental and physical disabilities, she said. He does not speak and does not understand electronics and seemed confused the one time they tried a video call with him, she said.
“He is a child and he needs his parents,” Libralesso said. “I’m not a visitor to my son. We don’t go there and drink tea and play chess — we are his caregivers.”
Libralesso said her son has a seizure disorder that she’s become attuned to over the years and said she can help his medical needs if she’s allowed to visit him as she used to.
The family said they made the difficult decision early on to not continue with video calls or window visits, which have been available to them since he went into isolation.
Her son lives in a small group home with one other resident — a third was taken out by the family at the onset of the pandemic. The home is run by Empower Simcoe.
After months of trying to get in touch with numerous government ministries and medical officers of health, the family said they’re now taking the company to court.
The family alleges in its application filed on June 22 to the Human Rights Tribunal of Ontario that the organization discriminated against their son due to his disability and violated his human rights for failing to accommodate his disability.
Empower Simcoe CEO Claudine Cousins said the company must follow the policies and guidelines set out by the Ministry of Children, Community and Social Services, which does not allow parents or guardians to be deemed essential.
Cousins said the company, which operates 41 group homes, will not reduce or eliminate the safeguards currently in place.
“Empower Simcoe certainly recognizes that this is a difficult time for families with loved ones in residential-care settings, however these actions are key to protecting the people supported and frontline staff that care for them,” Cousins said.
The province recently relaxed some of the rules for visiting congregate care settings, including group homes and long-term care facilities, with conditions.
Libralesso is allowed to visit her son outdoors so long as they have tested negative for COVID-19 in the previous two weeks and they remain two metres apart.
But she said that due to her son’s difficulty regulating his body temperature, outdoor visits during a heat wave are problematic. And so are the physical distancing rules.
“My son is extremely physically affectionate as he’s non speaking,” Libralesso said.
“His way of communicating is through taking your hand and taking you somewhere or giving you hugs.”
The staff, she said, would have to physically restrain her son from climbing all over his father, as he usually does.
A proposal from the company to protect against that physical contact would see the family on the other side of a gate at the home, she said.
“I don’t want to put him through that,” she said.
Since they cannot communicate the complexities of the pandemic and its multitude of rules, the boy has no idea what happened to his family, she said.
Before the pandemic, the boy would see his 10-year-old brother every day at school. But all schools in Ontario went virtual in March.
He used to come home every weekend to visit his family, Libralesso said. But that ended when the province went into lockdown.
“I don’t think he understands why, overnight, he stopped going to school, he stopped seeing his parents and his brother, and he doesn’t leave the house except to go for walks around the neighbourhood.”
During previous summers, their boy would swim in their pool on weekends, Libralesso said.
“His favourite thing to do is to swim, he loves it,” she said. “It’s devastating for us to think about how small his life has become.”
There is some short-term hope for the family, Libralesso said.
The home has agreed to let the family take their son to the Hospital for Sick Children for a few days in mid-July for ongoing tests in the epilepsy monitoring unit, she said.
“We’re essential enough for a visit to the hospital — we are also essential enough for the rest of his life,” Libralesso said.
“We hope this can be fixed sooner than later.”