'He can't understand why he's not seeing his family': Mother of non-verbal son begs for visitor exemption

Pamela Libralesso says her biggest fear amid the COVID-19 pandemicis that her teenage son Joey doesn't knowwhere his family is or understand why they aren't visiting him.

Joey, 14,has multiple disabilities related to a genetic condition, and has lived at a group home operated by Empower Simcoein Barrie, Ont., for seven years. Prior to the pandemic, his family wouldsee him throughout the week at school and bring him home on the weekends.

But now, they've been forced to stop all in-person visits for seven straight weeks due to concerns they may bring the novel coronavirus into the facility.Joey is non-verbal, and his mother says he likely doesn't have the capacity to understand why they're not seeing him.

"We're very frustrated and we're extremely sad that we're not able to see him and we wonder what is he thinking," Libralesso told CBC Toronto.

Libralesso now finds herself among a group of parents and caregivers across Ontariowho have been calling for exemptionsto the strict visitor guidelines put in place by the province.Libralesso worries about warnings coming from advocates in this area that asignificant amount of time without access to loved ones can cause great anxietyand potentially have long-term effects on those living with intellectual and physical disabilities.

The guidelines from the province identifyessential visitors 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."

Libralessosaysshe was given the option to remove Joey from the home, but would have had to care for himuntil the pandemic is over, something she can't handle with her husbandworking long hours. She describes the care her son is getting at the home as "incredible" but says nothing compares to being with a parent.

She says what she wants is permission to have a structured visit with her child, something that's still off-limits based on the provincial rules.

"Joey is not ill, but he's a child," she said.

"We were told we couldn't visit with him at his house or bring him home, which we normally do."

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Libralesso has exhaustedall avenues fighting for the chance to see her son, including reaching out to government officials and their local medical officer of health.

"I alternate between being devastated and being motivated to effect change," she said.

"Not just for my family but for other families dealing with the same thing."

Group home, government responds

A statement sent to CBC Toronto from Empower Simcoe CEO Claudine Cousins says the safety of their residents and staff is top priority.

"To that end, we have implemented many necessary processes and safeguards, including no visitors to any of our 41 group-living locations," the statement reads.

Cousins also adds that a number of families have made the decision to keep their loved ones with them at home.

"Empower Simcoe will not reduce or eliminate any of the safeguards currently in place."

A statement from the Ministry ofChildren, Community and Social Services referred to itsCOVID-19 action plan for vulnerable peopleand says:"In line with the advice of Ontario's Chief Medical Officer of Health its focus includes enhancing the screening of visitors, staff, and residents on sites, as well as restricting non-essential visitors."

The statement goes on to say the ministry "recognizesthis 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."

'It's a very complex issue'

Sherry Caldwell, co-founder of the Ontario Disability Coalition, says she's been hearing these stories play out across the country.

"People that have intellectual delays and are non-verbal are already vulnerable," she said.

"To not be allowed to have their support person with them, their family or caregiverthat can help them communicate their needsputs them at even more risk and vulnerability."

Caldwell says hospitals and group living environments need to start working with families and comingup with a balance that allowsindividuals with higher needs to access that support.

"I think it's a very complex issue," she said.

"We don't want to put people at additional risk but we have to take their accommodations into account."

Caldwell says a prolongedabsence ofthese caregivers can increase anxiety andstress in children with intellectual disabilities and adversely affect their behaviourover time.

"[Parents and caregivers] are not visitors; they are vital parts of these children's and young adults' lives."

Libralesso says she hopes sharing her story will prompt officials to start looking more closely at the different types of scenarios across the community.

She says one of the more painful milestones over this period of time was not being with Joey on his 14th birthday on April 1, when they would normally all be together celebrating and sharingcake.

"We chose to observe it in a very low-key way, knowing that at some point in the future we will have that birthday party."