Barred from visits, family caregivers say access to loved ones is critical

Joey Libralesso doesn't know where his parents have gone.

It's been nearly seven weeks since the provincial government restricted visitors to long-term care homes and hospitals to try to slow the spread of COVID-19. Shortly after, the Barrie group home where Joey stays on weekdays informed the 14-year-old boy's parents that they would not be able to see him in person until the pandemic is over, said his mother, Pamela Libralesso.

Joey is non-verbal with severe intellectual and developmental disabilities, and isn't able to understand why he no longer goes home every weekend, when both his parents are home and able to take care of him, Libralesso said.

“He has no idea what is going on, or why we've suddenly disappeared," she said.

“I’m devastated. We are devastated,” she said. "This is a child who is an active member of our family, who is home with us every week. To go from that to nothing — to not being able to see him — is devastating.”

The fact that she didn't cry during the interview was "remarkable," she said.

Virtual visits are out, since Joey can't operate technology on his own — and seeing his parents on a screen would likely cause him more distress and confusion, Libralesso said, even if it would make her feel better.

She said she's tried every avenue before resorting to the media or legal options, including trying to contact various government ministries and her local medical officer of health. "But I feel we've sort of reached the end of the road."

On March 13, the province's Chief Medical Officer of Health Dr. David Williams issued a memorandum that restricted visits to congregate care settings in Ontario — places like long-term care, retirement and group homes — to "essential visitors," who are defined as "those who have a resident who is dying or very ill or a parent/guardian of an ill child or youth in a live-in treatment setting." The memo said the guidelines would be re-evaluated in the coming weeks.

But facilities are interpreting these guidelines too strictly, experts say. As a result, many family members who normally provide care for their loved ones have been prevented from doing so.

Patient advocate Julie Drury, the former chair of Ontario's Patient and Family Advisory council, said it's critical for family caregivers to be treated as "partners in care" instead of visitors. Research shows that family caregivers who work with medical staff “have a huge impact on patient outcomes," Drury said, lowering the risk of things like medication errors, falls and hygiene issues.

“The thing that tears at my hearstrings about Pamela is that that child is 14 years old and hasn’t seen his mother, and had a hug from his mom, in seven weeks. And there is no end in sight," she said.

Family members are also necessary to interpret the needs of patients with communication issues, Drury said.

Laura Meffen has been desperately trying to do that from home. Her 21-year-old daughter Emily is currently at Markham Stouffville Hospital with COVID-19, which she caught at Participation House, a facility for adults with disabilities, during the outbreak there.

Emily uses a wheelchair and has limited verbal skills due to the neurodegenerative muscular disease NGLY1, Meffen said. That makes communicating with nurses and doctors difficult. Since Meffen isn't allowed in to see Emily, she has had to call in every day for the past two weeks to check in and answer questions about issues she could easily solve if she were there.

For instance, hospital staff didn't know that when Emily said her stomach hurt, it was due to her period, not the coronavirus, Meffen said. She said she doesn't blame the nurses or doctors for not being able to understand Emily — she just wishes she was there.

“She’s constantly asking, I want mommy, I want mommy, I want home. I don't know what she's thinking — why are her parents not there with her?" Meffen said. “Does she think she’s being abandoned? I don’t know.”

Before she took Emily out of Participation House, Meffen said she hadn't seen her daughter for over six weeks due to the visitation restrictions. Now, after two weeks in the hospital, she's only been able to have a couple of FaceTime calls with Emily, Meffen said.

"It's so hard. I think the hardest part when she went to the hospital was, would this be the last time I would see or hug my daughter?" she said. "If something had happened to Emily, I wouldn’t be there to say goodbye to her physically. I wouldn't have been able to have that last hug, that last holding her hand, that last kiss. And that was just heartbreaking to know that you wouldn't be there for her in the end to comfort her, and to comfort myself, too.”

Thankfully, Meffen said Emily is doing very well and is on track to be released either back home or to Participation House.

The "knee-jerk" guidelines likely violate sections of Ontario's Long-Term Care Homes Act that guarantee patients' rights to see family members and designated decision-makers on their behalf, said Vivian Stamatopoulos, a social sciences professor at Ontario Tech University who studies unpaid family caregiving.

She quoted an article by Franco Carnevale, a McGill University nursing professor: "When older adults are barred from access to trusted family members, their vulnerability is dangerously amplified," she said.

"My mother relies on me to help her remember what was told to her, ensure that her own questions were raised, judge the trustworthiness of the recommendations she was given, and to help her decide what is best for her to do," Carnevale writes, later adding that the same goes for many younger people as well.

As the Star reported earlier this month, Ontario's patient ombudsman has received a flood of complaints about the restrictions.

The decision to restrict visits "was not made lightly," said Gillian Sloggett, the press secretary for Long-Term Care Minister Merrilee Fullerton, when asked if Ontario might explicitly allow visits from family members to long-term care homes, as British Columbia is considering. "However, it was a critical decision to make and is equally critical to keep in place," she said, due to the ongoing threat of community spread in long-term care homes.

Group homes fall under the Ministry of Children, Community and Social Services. Minister Todd Smith's office said each visitation request will be considered on a case-by-case basis.

"We recognize this is a difficult time for families with loved ones in residential care settings but these actions are key to protecting the residents and frontline staff that care for them," press secretary Palmer Lockridge said in a statement.

Sloggett pointed to updated guidelines for care homes, issued on April 15, which allows visits from anyone "performing essential support care services for the resident."

But even that memo “can be interpreted as broad, or it can be interpreted as highly restrictive,” Drury said.

"It needs to be more specific," she said.

Meffen said she's hopeful that with enough pushback, the province will soon make exceptions to its restrictions.

“I am hopeful because I think our voices are being heard,” she said. “I think this pandemic has just shone a light on all the cracks that were always there.”