They're among the most vulnerable—but they're not receiving the adequate care they need.
Liam Skinner will do all he can to avoid mainstream health care providers. The 35-year-old trans man is no stranger to uncomfortable and humiliating encounters while trying to access health care. Once, for example, while visiting the Hassle Free Clinic during men and trans hours, Skinner was told he may have to go to the ladies clinic. “They treated me like a special case in front of a lot of people in the waiting room,” he recalls. “I never went back.”
Fearing further discomfort, Skinner has instead relied on the care of loved ones when in need of medical attention. Before and after his top surgery, Skinner turned to family and friends—and not the doctor—for healing and support.
He’s not alone. Dealing with the health and accessibility issues can be harrowing for many. But for Toronto’s LGBTQ population, it’s a particularly difficult experience.
There are few options for those who are sick in the queer community: long-term care homes are seldom equipped to address their needs (in Toronto, there is just one City-operated home that caters specifically to the LGBTQ community). The burden on family members for care can often be too heavy to handle. Many, such as Skinner, fear discrimination at doctors’ offices.
Instead, some turn to home care, in which services are provided directly to them in the comfort of their own dwellings. But, as a new study out of York University has revealed, LGBTQ people are often invisible in home care.
The research, dubbed LGBTQ Homecare Access Project, found that Ontario’s LGBTQ communities face barriers to finding high-quality home care that meet their distinctive needs. These needs can range from particular health-care requirements—such as physical or medical treatments regarding gender transition or coping with an HIV/AIDS diagnosis—to general concerns about discrimination and just behaviour.
The study revealed one in three home care providers believed they had never worked with an LGBTQ client, while 90 per cent of home care service providers said they never received continuing education when employed in home care that focused on a client’s sexual or gender identity. The research also showed that transgender people in particular actively avoid seeking home care.
Although there have been previous studies and recommendations to meet the specific health-care needs of the LGBTQ community, such as the 2008 LGBT Tool Kit, a City of Toronto initiative—this research project was the first to look at home care access specifically.
The study used a web-based survey, individual interviews, and focus groups to collect findings.
Social work professor Andrea Daley, who was also the lead researcher on the study, says the report addresses the needs of a community that has often had a tumultuous history with the Ontario health system. Historically, traditional health care institutions have been unjust to LGBTQ people.
“The worst is when you think it’s a safer space because of posters of inclusion and then the staff are clueless and harmful in their approach to you,” Skinner says.
There is a direct correlation, Daley adds, between LGBTQ people’s apprehension in asking for home care services and the need for further education of frontline caregivers who enter what is a safe place for people who often feel discriminated against.
“We can think of the ‘home’ as taking on great significance as a place where queer people can ‘do’ their identities and relationships with a greater level of freedom,” Daley says. “In stating this, we imagine that the margin of ‘freedom’ within LGBTQ homes and the potential for self-expression and affirmation is likely affected by the discriminatory reactions and unpredictable support, including overt hostility, that LGBTQ people often anticipate and may experience during interactions with service providers.”
Published in time for Canada’s largest LGBTQ health conference, hosted by Rainbow Health Ontario (who also collaborated on the study), the report not only provided much-needed statistics about home care, but also focused on the improvement of training and education for caregivers and frontline workers.
Toronto Central Community Care Access Centre (CCAC), another project collaborator, is just one organization attempting to improve care for the queer community.
“We’ve worked extremely hard at breaking down barriers for people who experience any form of inaccessibility: colour, race, religion, sexual orientation, financial status, and so on,” says CCAC chief performance officer Anne Wojtak. “We’re excited that with these findings we can continue to explore new ways to support better training, communication, and ultimately access to care.”
Despite the results of the study and the hope that greater understanding and funding will come from it, Skinner doubts he will turn to health care workers as he ages. He says he will likely turn to his own community for help again.
“There is little to no trust on my behalf and many others that there is safety in home care or hospital care for trans folks,” Skinner says. “As part of an ageing generation in the community, this study brings up fear when I think I may one day need rely on a system that makes no effort to include my identity and actually serves to erase it.”