Families of group-home residents fight 'barbaric' COVID-19 restrictions

By Louise Kinross

As Ontario's COVID-19 restrictions are lifted, there's one group of citizens who have been forgotten, one group still denied real access even to their own parents: disabled children and adults who live in group homes.

"I'm not sure why a 100-year-old long-term care resident can sit on a patio at a restaurant and go shopping at Winner's, as I saw in the news last week, when the vast majority of our group homes are still under barbaric restrictions," says Pamela Libralesso (above photo left), whose son Joey (above right) lives in a group home in Barrie, Ont. Last year, Pamela and her family didn't see Joey, then 14, who requires round-the-clock care, for six months. 

In March, the Ontario Human Rights Tribunal found the group home's policies discriminated against Joey. "Technology is not a reasonable form of accommodation for a child who is non-verbal and communicates, at least in part, through physical touch," adjudicator Jennifer Scott wrote.

Pamela is now able to visit her son, and even hug him. But that's not true for most group home residents, she says. "One agency has flat out said there will be no brief hugs and no trips in the community and no visits to family homes."

Pamela organized a group called Ontario Families of Group Home Residents, which has over 50 members. We spoke about their ongoing challenges to be heard.

BLOOM: Tell us a bit about your son Joey, who lives in a small group home with one other resident. 

Pamela Libralesso: Joey is a really joyful person. It's very rare to see him unhappy. He loves watching cars on TV or in person; he loves swimming, which is his favourite thing to do; and he loves school.

BLOOM: Before the pandemic, you had unlimited access in terms of visiting Joey or taking him out for the day or home for an overnight?

Pamela Libralesso: 100 per cent. We typically brought him home every weekend when my husband was home because his level of care requires two adults.

BLOOM: Why are in-person visits crucial for Joey?

Pamela Libralesso: Children need their parents, regardless of whether they're disabled or not, and parents need their kids. The more complicated answer is that he's always been a part of our lives, and the group home spot didn't take the place of his family. His home is with us. When my younger son was small, he called the group home 'Joey's 'nother house,' and we still call it that. 

There was no way to explain the restrictions to Joey in a way that he could understand. We tried a virtual visit once, and he was confused. He couldn't understand why his parents and family were in this little box he's used to watching videos on. We were offered a visit outside, with us on the grass and him on an elevated deck, separated by a fence. That wouldn't work for Joey. When we pick him up, he barrels out of the door and gives me a hug and heads to my husband and jumps in the car. For him to see us, and be prevented from coming to us—I see that as a restraint. I don't know what that would have done to him, and I wasn't willing to test it.

BLOOM: You brought your case to the Ontario Human Rights Tribunal. The agency that runs your son's home has relaxed restrictions for its homes, but other Ontario agencies haven't.

Pamela Libralesso: That is my understanding. They run 41 group homes for people with intellectual disabilities and the ones I know have the same access to their family as Joey has to us. We bring him home for day visits. We understand that in a pandemic things can't be exactly as normal. For example, we haven't had him overnight since the beginning of the pandemic. If we did keep him overnight, on returning he would be segregated from his housemates for 14 days. 

BLOOM: I thought you said he already had his first vaccination?

Pamela Libralesso: He does, but he would still be isolated if he came home. 

BLOOM: You’ve begun an advocacy group called Ontario Families of Group Home Residents.

Pamela Libralesso: We have over 50 parents and siblings of group home residents. In the last couple of weeks we decided we have to start speaking with one voice because no one is listening to us fighting our individual battles. 

BLOOM: What kind of restrictions are still being imposed in group homes?

Pamela Libralesso: Every agency is different. I can send you three memos from three agencies and they all describe a different way of implementing the latest guidance from the Ministry of Children, Community and Social Services. Some have said you can have a day visit, but staff will accompany the resident to your home, to make sure they don't go in your house. Other agencies have said we'll allow brief hugs, but they have to happen on our property, be supervised, and be time-limited. One agency has flat out said there will be no brief hugs and no trips in the community and no visits to family homes. It's monstrous. 

Something similar happened last year when Ontario came out of lockdown. It took two months after the rest of the community was eating on patios and getting haircuts for our family members to get some semblance of freedom. These are people who led very full lives prior to the pandemic and who have lost everything. I thought once I got what I needed and wanted for my son that all would be well. But unfortunately, our human rights decision didn't have a broader impact. 

BLOOM: Why do we hear so little about this population?

Pamela Libralesso: Historically, this group of people has been overlooked and ignored. It's a much smaller group than those who reside in long-term care homes. They weren't prioritized for vaccines.

BLOOM: Based on a large American study showing that people with intellectual disabilities were almost eight times more likely to die of COVID than the general population, these residents should have been at the front of the line.

Pamela Libralesso: I'd love to hear the Ministry explain why long-term care residents were getting vaccinated at their homes in January, when my son got his first vaccination in the middle of April after I got him his appointment. There are some regions in Ontario that did have specific clinics for people with intellectual disability and went into group homes. But that didn't happen in the Simcoe Muskoka District Health Unit. 

It's incredibly frustrating that the government has argued that this group is super vulnerable, but they didn't prioritize them for vaccines.

BLOOM: What impact did not seeing you for half a year have on Joey?

Pamela Libralesso: When we picked him up after six months he was a different child. Before, he was always a very vocal child—making a lot of vocalizations and sounds that indicate his mood. He was silent for weeks after we picked him up. He was shy. He ignored his father, and that's his person—he's a daddy's boy. It was like his dad was a ghost. It took weeks and weeks to get him back to where he was. I think that's a best-case scenario after being separated from your family for that long. For families who still can't see their kids meaningfully now, we don't know the full impact. 

BLOOM: Have you heard from families outside Ontario?

Pamela Libralesso: I haven't heard from anyone outside Ontario. We're a small community compared to long-term care families. When they got on social media and were picked up by media, people from other provinces became involved with each other's plights.

Prior to the pandemic, there were family councils and resident councils in long-term care. No such thing exists for group homes. Until the pandemic started, I didn't know any family that had a child in a group home operated by our agency. The first thing people say when they join our group is: 'Oh my gosh, I just read through your posts and I've had a child in a group home for 30 years, and I've never had anyone to talk to who knows what I'm dealing with.' We've all been on our own.

One of the reasons people think things are fine in group homes is that the Ministry uses the language of "essential caregivers" throughout documents. However, I've connected with over 50 families, and not a single one has been designated an essential caregiver to their child. In long-term care, it's written in the directive that every resident gets two essential caregivers. When you read about group homes, it says something like parents and guardians can be considered essential caregivers. However, to this day, I'm not designated an essential caregiver to my son. His visits are considered essential, but I'm not essential.

If you'd like to connect with Pamela's group Ontario Families of Group Home Residents, please e-mail OntarioFGHR@gmail.com.