Before the pandemic, Karina Zwaan's 25-year-old daughter, Allyson, would tell her that she wanted to watch a movie by placing her hand on the remote, or that she wanted a snack by guiding her mother to the fridge.
Allyson Zwaan-Fragomeni lives in a Barrie, Ont. group home due to a genetic condition that makes her non-verbal. She requires around-the-clock care but her mom says she still craves a family connection.
"When we do have interactions, she's touching my face, touching my mouth, she wants me to talk to her," she told CBC Toronto.
Zwaan hasn't hugged Allyson since February, when the Ontario government shut down all visits to long-term care and group homes, like the one in Barrie, Ont. where Allyson lives. Even updated visitor guidelines released this month ban touching.
Parents like Zwaan are now warning the physically distanced visits they can have are brutally tough, and worry they may be traumatizing for their children.
"Comprehensively, she's functioning at about 18 months, so it's like explaining to a toddler they can't touch their parents," she said. "I am fully aware those visits hurt her feelings."
Zwaan and other parents want the government to change its position and allow them access to group homes as essential caregivers, and to remove the physical distancing rules. So far, the Ontario government is sticking with its plans citing the best advice of medical experts, even as the Opposition is increasing pressure for it to allow loved ones more access.
"I can get a massage, get a haircut, have a beer on a patio but I can't hug my child? It's inconceivable to me," Zwaan said.
Zwaan described her first indoor visit with her daughter as 'traumatizing,' and noted changes in her behaviour such as limited eye contact. She says normally her daughter is very affectionate, but that aspect of her personality seems dimmed.
"She walked into the room and she was happy to see me but terrified to come near me," she said. "I get the feeling she believes she has done something wrong, she's so scared and hesitant, trying to be good and behaved to get me to take her home."
Zwaan said the visit ended with Allyson looking sad and defeated, and she didn't even wave goodbye.
In June, Pamela Libralesso filed a human rights application in her effort to become an essential caregiver for her 14-year-old son. She hadn't been able to see her son, who is non-verbal, since mid-March when the province banned visits at group homes.
"Obviously, after four-plus months he is going to want to immediately and repeatedly come to his parents, and would have to be physically restrained in order to prevent that from happening," she said.
Libralesso said she has made a very difficult decision to continue not seeing him, because she believes it would do more harm than good for her teen's mental health.
"We think it's better for his emotional and mental health that he not see us at all versus the frustration of not having his communication method, which is touch, respected or listened to," the mother said.
Trust is being broken, advocates say
Joyce Balaz, who is with Family Alliance Ontario, an organization that supports people living with disabilities, said her group is hearing from several families choosing not to visit their loved ones under the new guidelines.
"The damage is just immeasurable," Balaz said, adding that for people with developmental disabilities, it takes a long time to develop trust with a caregiver.
"If it's a family caregiver that trust is there, but when that person hasn't been there for a while, they start to wonder, 'What have I done wrong? Where are they?'"
Balaz said to rebuild that trust after a long absence where the individual feels abandoned is very difficult.
"The harm that's being done is very long lasting. It will be very traumatic for people in the future," she said.
Government, group home respond
According to a statement from a spokesperson for the Ministry of Children, Community and Social Services, the ministry understands how difficult the last few months have been for residents and families.
"We're taking a gradual approach to resuming visits to ensure the safety of residents, visitors and staff," the statement said.
The ministry said its guidance to agencies "outlines an essential visitor as a person who performs an essential service to the operation of a service agency or is a person considered necessary by a service agency to maintain the health, wellness and safety, or any applicable legal rights, of a resident."
The statement said parents and guardians can be included as essential visitors depending on the specific details of the situation, which service agencies determine on a case-by-case basis.
Lisa Gretzky, MPP for Windsor West and the NDP's critic for community and social services, tabled a motion calling on the government to develop an essential caregiver strategy to allow family members access to congregate-care settings.
Gretzky said there is not enough consistency across the sectors, which means the guidelines are being interpreted differently at various facilities.
"In some places, the congregate care settings are allowing inside visits but it's still not really appropriate inside visits. Others are saying they have to be outside visits. Others are saying no visits at all."
Gretzky said there needs to be clearer guidelines and a strategy in place immediately that includes considering parents and caregivers essential visitors.
In a statement, Empower Simcoe, which runs the group homes where both Zwaan's and Libralesso's children live, said it is following the Ministry of Children, Community and Social Services' guidelines, which include physical-distancing during visits.
Empower Simcoe says its "approach to visiting inside a congregate living setting will consider the health and safety needs of residents, staff, and visitors, and ensure risks are mitigated."
The organization says outdoor visits are preferred.
Meanwhile, Zwaan said she will continue to see her daughter under these difficult circumstances for her own mental health, but she hopes to see people with disabilities being more carefully considered in the pandemic response, and changes to the government's guidelines soon.
"It's an easy group to sweep under the rug," she said.
Referring to her own daughter, she said: "She has lost her voice, she is a different person, she's been silenced."