From March to July 2020, Linda Taylor didn’t see her son at all. Thirty-three-year-old Tom, who has been diagnosed with an intellectual disability and mental illness, lives in an apartment attached to a group home in Windsor. When the pandemic began, so did the restrictions.
Starting in the summer, they had supervised outdoor visits at which masks were required. In September, the group home allowed Tom to have one overnight visit a week at his mother’s home. The visits stopped in November, resumed at the end of February, and stopped again at the beginning of April. They resumed at the end of that month.
Taylor says Tom is usually laid-back and sociable. However, since COVID-19, she says, he’s had outbursts and has become more erratic: “His behaviour escalated drastically because of the COVID restrictions.”
In July 2021, as part of Step 3 of the provincial reopening, the Ontario government changed the rules for group-home visitation: “With continued improvements in Ontario’s key COVID-19 related public health indicators, including an increase in vaccination rates, more outdoor and indoor visits will be allowed for both essential and non-essential visitors, along with recreational activities and overnight stays outside of the residence, with appropriate precautions.”
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Taylor says she felt “relieved” when the rules changed. But she and others with loved ones in congregate settings say the effects of pandemic restrictions have been severe — and they want the government to make it clear that families are essential so that such states of emergency as COVID-19 won’t cut off access.
Congregate-care guidelines from the Ministry of Children, Community and Social Services define essential visitors as those who, like contractors, perform “essential services to support the ongoing operation of a service agency” or those who are “considered necessary to maintain the health, wellness and safety or any applicable legal rights” of a resident. Such visitors, they state, could include parents, health-care professionals, and social workers — and “wherever possible, essential visits such as those necessary to maintain the health, wellness and safety of a resident will be permitted to continue unless the local public health unit directs otherwise as part of outbreak management.”
But not all agencies have consistently allowed for such access. In March, for example, the Human Rights Tribunal of Ontario ruled that Empower Simcoe had discriminated against a teenager at one of their homes by not offering in-person visits.
“Technology is not a reasonable form of accommodation for a child who is non-verbal and communicates at least in part, through physical touch,” the tribunal wrote. The tribunal found that Empower Simcoe had not adequately investigated alternatives that adhered to other COVID-19 protocols, such as mask-wearing, symptom screening, and practising proper hygiene. The tribunal gave Empower Simcoe 30 days to develop an accommodation policy for children under the age of 18. The agency appealed the decision and lost, and has since asked for a judicial review.
“Empower Simcoe has satisfied the direction of the Human Rights Tribunal of Ontario to develop an accommodation policy specifically for children under the age of 18,” a spokesperson for the agency told TVO.org in an email. “The principles described in that accommodation policy are consistent with the requirements of the Ontario Human Rights Code and Empower Simcoe’s long-time approach to human rights and accommodation.”
When asked about the agency’s policy for residents over the age of 18, the spokesperson said, “Our policy, like the policy for those under the age of 18, is consistent with the requirements of the Ontario Human Rights Code and Empower Simcoe’s long-time approach to human rights and accommodation. Requests for accommodation are considered on an individual case-by-case basis and, where required, may involve a collaborative dialogue between all stakeholders.”
Many, though, say such accommodations should be guaranteed for those over 18.
Lisa Pasquariello says pandemic restrictions have caused distress for her son, Joey. For three years, Joey, 21, has lived in a group home in Vineland run by Bethesda Community Services, an agency that supports adults with developmental disabilities throughout the Niagara, Norfolk, and Brant regions. He has autism and an intellectual disability. Bethesda permitted outdoor visits, but Lisa says her son didn’t appear to enjoy them: staff sometimes spent 20 minutes coaxing him out of the house, and the supervision confused him. He couldn’t understand why he wasn’t allowed to hug his parents.
Brian Davies, Bethesda’s executive director, says the agency has taken steps to meet everyone’s needs: it’s made some accommodations for individuals who cannot have meaningful interactions with families while physically distanced, for example, and purchased iPads for residents who didn’t have them. Parents are considered essential visitors.
“We’ll work along with every parent to determine what the individual’s visitation should look like,” he says.
But many families and advocates don’t want visitation rights to be situation-dependent.
Agencies continue to be “gatekeepers” that decide who is an essential visitor, and that’s a concern for Gabriel Reznick, a lawyer with ARCH Disability Law Centre. (While ARCH represented the client in the human-rights case against Empower Simcoe, Reznick was not involved.)
Government-issued visitor guidelines still don’t explicitly state that parents are essential visitors, he says, and give control to group homes and agencies. “That has to be removed and replaced with more clear language,” he says. That would “prevent group homes from making the guidelines even more restrictive.”
Many group-home residents receive good care, Reznick says, noting that quality of care hasn’t been the main concern during the pandemic. Instead, the concern has been that group homes don’t recognize the important care parents give.
“A hug from a parent is a lot different from a hug from a staff at a group home, especially for someone who only communicates via touch,” he says.
According to Yona Lunsky, director of the Azrieli Adult Neurodevelopmental Centre at Toronto’s Centre for Addiction and Mental Health, pandemic restrictions have had “quite awful” impacts on the mental health of many group-home residents and people in supported-living arrangements: “Many people who live in residentially supported settings have very rich lives with their families that were put on hold.”
It’s unclear how long the effects of this could last, she says: “There’s a trauma that’s occurred. If people don’t understand why [they can’t see their family member] or what’s happened, it may not be that different to them than if that person just disappeared and was gone. We have to have a trauma-informed approach, recognizing the different losses that happened to people and helping them move forward. We don’t know how quickly any of us will ‘bounce back.’”
And parents aren’t the only visitors who should qualify as essential, says Andrew Nielsen. Nielsen, 48, has spastic quadriplegic cerebral palsy, which affects his speech, as well as his arms and legs. He uses a wheelchair and speaks and accesses social media through assistive technology. Since July 2019, he’s lived at Participation Support Services Stedman House in Brantford. (He lived in another group home in Brantford before that.)
Both of Nielsen’s parents are dead. His best friend, Todd Stephens, helps him with his social media and assisted with answering questions in an email interview with TVO.org. The two have known each other for 34 years and talk every day.
“I want him to be my essential caregiver because he understands me better than anyone and can help me with all my care,” explains Nielsen. This gives personal-support workers more time to help other residents at Stedman House, Nielsen says. Stephens cuts Nielsen’s nails and trims his hair, moustache, and goatee. Nielsen says he began to look like a “mountain man” while they couldn’t see each other. Years ago, when he found out he would need to use a gastronomy tube to eat, Stephens brought him a final meal of lasagna, fish, and a Harvey’s hamburger. “He helped me deal with the loss of eating,” Nielsen remembers.
He does have relatives throughout Ontario, and while he says he knows they love him, “they don’t have the time like Todd does.”
Many, including Taylor, hope that a private-member’s bill introduced in September 2020 could lead to change. The More Than a Visitor Act, proposed by Lisa Gretzky, NDP critic for the Ministry of Community, Children and Social Services, aims to ensure that caregivers of a group-home resident would not be treated “merely as a visitor,” especially in emergency situations. The bill defines a caregiver as an individual who “continuously or occasionally provides significant, unpaid, non-professional support to a person receiving care, support or services,” shares an “emotional bond” with the person who receives care, and is considered by the person receiving care, or their substitute decision-maker, to be a designated caregiver. “A designated caregiver,” the bill reads, “may be a family member, a neighbour, a friend, a support person, an attorney for personal care or property under the Substitute Decisions Act, 1992 or another similar type of person.”
The bill passed second reading and was ordered to standing committee last September.
According to Ontario Families of Group Home Residents — a group of 60 families that formed during the pandemic to provide support and information — since second reading, the legislation has “collected dust.”
On July 19, OFGHR and the Aptus Family Advisory Committee, a group that represents more than 120 families, wrote to Merilee Fullerton, the minister of children, community and social services, and urged that the bill proceed without delay: “It’s not too late to call it to committee and send it back for third reading.”
The groups are also calling for congregate-care home residents to be allowed to choose two essential caregivers — as those in long-term care can. “We are requesting that the same rights be afforded to people with developmental disabilities,” they write.
Sent before the fourth wave was declared, the letter states that such rights should be respected during a pandemic: “In our view, residents’ access to caregivers as essential visitors should be preserved in all circumstances, including a potential fourth wave of COVID-19 or emergency of another virus.” Fullerton has agreed to meet with the group on September 26, a group spokesperson told TVO.org in an email.
A ministry spokesperson tells TVO.org via email that “essential visits such as those necessary to maintain the health, wellness and safety, or applicable legal rights of a resident have been permitted throughout the pandemic” and that “the ministry continues to work with public health experts to review direction for our congregate living settings, which responds to the unique needs of the clients we serve.” The statement did not address questions about the bill’s progress or whether the government will work to ensure that congregate-care residents have access to designated caregivers at all times, including during a pandemic.
There are, however, no guarantees that its passage would remove the concerns residents and their loved ones have about who qualifies as an essential visitor, says Reznick. As it is currently written, the bill directs the government to create plans to incorporate designated caregivers into congregate-care settings, such as group homes, but it leaves it up to the ministry to interpret what it means to have designated caregivers be “more than a visitor.”
“It needs to be fleshed out more with directives and guidelines to make it more prescriptive,” he says, adding that the government could also create regulations that state how it would apply to different service providers. “It’s drafted quite broadly.”
The proposed law would not only apply to group homes, but also to other service providers, such as long-term-care homes, retirement homes, public and private hospitals, shelters for people leaving human trafficking or women fleeing domestic violence, and emergency homeless shelters. “It’s a statement legislation,” says Reznick. “These problems exist in all of these sectors, in different ways.”
If the bill passes, the government would need to “figure out how exactly to put it into place,” he says, adding that the bill could also change during the committee stage.
Taylor hopes that, for her sake and Tom’s, the situation will change. “Shutting us out is detrimental physically, emotionally and mentally,” she says. “We need to have individuals with intellectual disabilities recognized as individuals with the same rights as everyone else.”
Correction: An earlier version of this article misstated Lisa Gretzky's first name. TVO.org regrets the error.