The day before Daniel Zaretsky’s 25th birthday last week, his parents brought a cake to celebrate with him in the backyard of his group home. But the occasion marked another significant moment: For the first time in more than a year, Mr. Zaretsky hugged his mother.
“I’m hoping when he comes home ... it’ll be a tighter, longer, better hug,” said his mother, Mona Taylor, who has been eagerly waiting for COVID-19 restrictions to ease so her son can visit the family house again.
Mr. Zaretsky, who has autism and is non-verbal, lives in a group home in Vaughan, Ont., for people with developmental disabilities. When the pandemic began last year, group homes in Ontario shut their doors to most visitors to protect their residents, many of whom are more medically vulnerable to the virus. Since then, families such as Mr. Zaretsky’s have mostly only seen their loved ones through video calls.
“The whole thing has been extremely traumatic for the family, but beyond that it’s been traumatic for Daniel,” said his father, Dr. Ari Zaretsky, who is a psychiatrist in Toronto.
Although Mr. Zaretsky’s parents have occasionally been able to visit him during the pandemic in the backyard of his group home, those visits have been allowed on and off because of changing government guidance. And when they do occur, Mr. Zaretsky’s parents have to physically distance from him and wear personal protective equipment. They haven’t been able to bring him inside their home for a visit since last summer.
For months, families such as Mr. Zaretsky’s have been struggling to navigate the visitation rules of congregate care settings. While Ontario’s Ministry of Children, Community and Social Services (MCCSS) makes the guidelines, each group home is left to interpret them as they see fit, creating what some families see as a confusing, illogical and onerous patchwork of rules. For instance, the ministry says it has allowed essential visitors throughout the pandemic, but who qualifies as such a visitor varies by group home.
Now, as COVID-19 case numbers drop and visitation rules start to relax, families’ grief over missing their loved ones is being replaced with a new challenge: trying to rebuild relationships strained by months of limited contact.
“He doesn’t trust us any more. Why would he?” Dr. Zaretsky said, adding that his son has been withdrawn and less responsive during their outdoor visits. “That’s the reaction that you see with children who have been abandoned.”
Mr. Zaretsky’s family has been longing to bring him home again for visits that his older sister, Lauren Zaretsky, says are vital because “he doesn’t have any other relationships with anyone else.”
Aptus Treatment Centre, which runs Mr. Zaretsky’s group home, started allowing families to bring their loved ones home at the end of June, but only for outdoor visits.
Group homes say they’re in a tricky situation when it comes to visitation rules.
“We really are trying to balance two really, really important things – being safety and connection – and they don’t work well together,” said Kim Erskine, executive director of Stewart Homes, a for-profit group of homes for people who are medically fragile. “We’re trying to find that right point ... that meets everybody’s needs and keeps them safe.”
Technically, the MCCSS has permitted essential visits to group homes throughout the pandemic, unless their local public-health unit says otherwise because of an outbreak. An essential visitor maintains “the health, wellness, safety and applicable legal rights of a resident,” and could include a parent or guardian, a social service worker or a health care provider, ministry spokesman Daniel Schultz said in an e-mail.
At Stewart Homes, many family members are considered to be essential visitors, but their role mainly takes the form of emotional connection and support, and staff provide “total care,” Ms. Erskine said. Indoor visits to their group homes have generally been restricted to essential visitors or allowed in situations where outdoor visits aren’t feasible and physical distancing can be maintained. Non-essential visits are allowed to take place outside the group home.
But Mr. Zaretsky’s group home, Aptus, doesn’t consider family members to be essential caregivers since staff already support residents with their day-to-day needs, president and CEO Ursula Rehdner said. If staff needed a family member’s assistance with a specific task – for instance, providing support to a resident as they were getting vaccinated – then that family member could be classified as an essential visitor, but only to perform that service.
Ms. Rehdner said she understood that families have been “distressed” by the limited contact with their loved ones, but emphasized that these decisions have been made to protect group home residents from the virus. She acknowledged, though, that Zoom visits aren’t ideal for all residents.
“It can be a challenging means of communication,” she said. “Families feel that loss, most definitely.”
Ms. Zaretsky shared her screen during her Zoom calls with her brother to play YouTube videos of his favourite songs or read his favourite books to him. But sometimes her brother turned off his camera, possibly because the video call was overstimulating to him.
“There’s no real relationship [or] connection building going on,” Ms. Zaretsky said. “I think the biggest concern for us as his family members [is] he has no understanding for why he’s being locked in.”
SurexCARE, which runs 11 group homes in the Greater Toronto Area for people with developmental disabilities, has also been relying on virtual visits for much of the pandemic. While the home has assessed whether families are essential visitors on a “case-by-case basis,” generally it hasn’t considered family visits to be essential, executive director Aruna Ogale said.
Last summer, Barbara Stephens and her husband were able to visit their 46-year-old son, Trever Stephens, outside his SurexCARE group home in Scarborough. But since then, they’ve only been able to talk to him over the phone or through FaceTime. This past Christmas was the first time he couldn’t come to their home for the holidays, Ms. Stephens said. His presents are still there, waiting for him.
She and her husband have been assuring their son that he’ll be home for a visit soon but are worried he’s tired of hearing them say that.
“It’s not easy,” Ms. Stephens said.
Ms. Ogale said SurexCARE started allowing families to bring their loved ones home a few weeks ago, two weeks after all group home residents had been fully vaccinated. Families still have to undergo COVID-19 screening when they pick their loved ones up from the group home, but don’t have to wear masks in their own homes during the visit.
Ms. Stephens and her husband are scheduled to bring their son home for a visit next Sunday. But she is concerned how her son will react. During one of their recent FaceTime calls, he wouldn’t look at them and walked away.
Mr. Zaretsky’s parents have been able to see their son outside at his group home recently, but Ms. Taylor said the visits are “not warm and fuzzy” because of the safety protocols they have to undergo, such as standing at least two metres away.
His family also worry that seeing him in person, but not being able to take him home, was further damaging their relationship with him.
“Daniel’s understanding is that when he sees any of us in person, to him that signals he’s coming home for a visit,” Ms. Zaretsky said. “If he’s not allowed to come home, because he doesn’t understand that he cannot, that will result in physical and emotional … damage on his part.”
On June 9, with an increase in vaccination rates and decline in COVID-19 cases in Ontario, the MCCSS started allowing all visitors to engage in brief physical contact, such as a hug, with group home residents, regardless of vaccination status; visitors, however, must still wear personal protective equipment.
Residents are also permitted to resume recreational activities outside of the group home, as long as they follow the province’s restrictions. The announcement prompted Aptus to resume outdoor, non-overnight home visits.
In a notice to service providers last week, the MCCSS said it would provide further guidance to align with the province’s Step 2 reopening some time in early July, Ms. Rehdner said. She said she expects that after this guidance is released, Aptus will be able to allow families to bring their loved ones into their homes, though families will still have to wear masks and maintain physical distance inside.
Mr. Zaretsky’s parents are frustrated that distinctions aren’t being made for those who are fully vaccinated, and by how slowly visitation restrictions have eased. Ms. Taylor said she thought the ministry and group homes should have done a risk assessment; when case numbers are low and vaccination rates high, the risk of COVID-19 transmission is low compared with the risk that tight restrictions have on residents’ mental health.
For now, the family is looking to put what they call a “cruel year” behind them and focus on repairing their relationship with their son.
In the meantime, Ms. Taylor is clinging to the memory of that birthday visit.
“There is still some trust,” she said. “You take whatever you can get.”
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