Toronto

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

It's been more than seven weeks since Pamela Libralesso has seen her 14-year-old son Joey, who is non-verbal. The group home he lives in is restricting visitors, following guidelines from the provincial government to curb the spread of COVID-19. Libralesso is calling on the home and the government to make exceptions for parents.

Group home says it's following government guidelines to restrict visitors during the pandemic

Pamela Libralesso says her family is distraught because they haven't been able to spend time with her son Joey for seven weeks due to COVID-19 visitor restrictions. She's calling on the province to declare parents and caregivers essential visitors. (Submitted/Pamela Libralesso )

Pamela Libralesso says her biggest fear amid the COVID-19 pandemic is that her teenage son Joey doesn't know where 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 Simcoe in Barrie, Ont., for seven years. Prior to the pandemic, his family would see 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 Ontario who have been calling for exemptions to the strict visitor guidelines put in place by the province. Libralesso worries about warnings coming from advocates in this area that a significant amount of time without access to loved ones can cause great anxiety and potentially have long-term effects on those living with intellectual and physical disabilities.

Libralesso describes her son Joey as 'one of the happiest children you'll ever meet.' She says the home gave them the option to connect with Joey online, but they've never done that before and she worries it will confuse him. (Submitted/Pamela Libralesso)

The guidelines from the province identify essential 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."

Libralesso says she was given the option to remove Joey from the home, but would have had to care for him until the pandemic is over, something she can't handle with her husband working 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."

Libralesso has exhausted all 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 of Children, Community and Social Services referred to its COVID-19 action plan for vulnerable people  and 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 "recognizes 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."

'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.

Sherry Caldwell, co-founder of the Ontario Disability Coalition, worries visitor restrictions due to the pandemic will put people with disabilities at risk and have a negative impact on their quality of life. (Submitted/Sherry Caldwell )

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

Caldwell says hospitals and group living environments need to start working with families and coming up with a balance that allows individuals with higher needs to access that support.

Libralesso, bottom right, says Joey, bottom left, has an especially close physical bond with his father. (Submitted / Pamela Libralesso )

"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 prolonged absence of these caregivers can increase anxiety and stress in children with intellectual disabilities and adversely affect their behaviour over 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 sharing cake.

"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."

About the Author

Talia Ricci is a CBC reporter based in Toronto. She has travelled around the globe with her camera documenting people and places as well as volunteering. Talia enjoys covering offbeat human interest stories and exposing social justice issues. When she's not reporting, you can find her reading or strolling the city with a film camera.

now