Physical distancing 'impossible' for the deafblind amid COVID-19 pandemic
TORONTO -- In an attempt to stop the spread of COVID-19, government and health officials across the country are continuing to call for physical distancing, but for some, this is more easily said than done.
Barbara Davis was born deaf and with low vision, which progressively worsened as she got older. As someone with significant hearing and visual impairment, Davis is deafblind. She currently lives with her husband, who is also deaf, in Burlington, Ont. and greatly depends on the assistance of an intervenor.
These trained professionals help those who are deafblind access information about the world around them by assisting with communication and mobility. Prior to the outbreak of COVID-19, Davis had access to an intervenor five days a week for a total of about 20 hours. Since then, this time has been reduced significantly.
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“Now, I have an intervenor twice a week for just a short time,” Davis told CTVNews.ca over the phone on Friday through an intervenor. “It's about two-and-a-half hours or less [each day], just enough time to get what it is I need.”
The 61-year-old receives her intervention services through the Canadian National Institute for the Blind (CNIB), an organization that offers support to Canadians who are blind or deafblind. As a registered member of the CNIB, Davis receives newsletters with updates on services. She was recently informed that the organization would be limiting access to intervenors due to the pandemic, in an effort to prevent the risk of contracting or spreading COVID-19.
Davis says spending less time with an intervenor has limited what she is able to do. Before the pandemic, she describes spending lots of time attending different events, going for walks and shopping. Now, she only leaves the house for necessities such as food, medication or doctors’ appointments.
“I love keeping busy so this has really affected me,” said Davis. “I have to find different ways to keep my mind busy but it's hard when having to stay at home all the time.
“Sometimes I feel stuck because it is really hard having limited access to things that are available to most people.”
Something as simple as connecting with family members can be a challenge for Davis. She says she struggles to use certain technologies to connect with her five children and 11 grandchildren. With the ongoing pandemic, communication has been limited to text via a braille display on her iPhone.
“Everybody is meeting using…video conferencing but I'm not able to access that, it's impossible for me,” she said. “I'm not able to see anybody on the screen and they're not able to touch me in order to communicate what’s happening.”
Davis communicates through tactile sign language, which involves signing through touch. Physical contact is an essential part of this type of communication, which makes distancing virtually impossible.
“When I work with my intervenor, I can't do the [physical] distancing, we communicate through touch,” explained Davis. “If I go out with my husband, he has to guide me everywhere and we communicate through touch, so we're not able to keep a distance.”
WHAT INTERVENORS ARE DOING
Karen Keyes, chief operating officer of DeafBlind Ontario Services (DBOS), says the organization is facing a similar challenge. DBOS is a provincial group that supports individuals who are deafblind, with a focus on those with congenital deafblindness, meaning the condition is present from birth instead of having been developed through life.
Just over one per cent of Canada’s population, or about 466,420 people, are deafblind. Ontario alone accounts for nearly half of that amount, with 211,250 people with deafblindness.
More than 200 intervenors provide around-the-clock care at 19 of DBOS’ residentially-based facilities across the province. As a result of the constant care required by clients, Keyes says it is impossible for the organization to implement physical distancing measures at its sites.
“We're in a home with people that require us to be beside them, to be their communication partners,” Keyes told CTVNews.ca on Thursday over the phone. “Even if you're working with your shift partner, your intervenor [or] a co-worker, you're in a home where it would be impossible to be two metres away from each other.”
Kelly Patterson is the manager of client services at DBOS. As a former intervenor herself, she describes the job as being the eyes and ears of those who are deafblind. It is because of this that close contact with clients is crucial.
“We often refer to ourselves as the bridge – we give [clients] that information back and forth from their environment to what's happening around them, and vice versa,” Patterson told CTVNews.ca via telephone on Thursday. “We literally have to have that close contact for that person to know we’re beside them [and] know what we're engaged in for us to be responsive to them when they are communicating.”
While it may be difficult to practise physical distancing within residential facilities, DBOS has taken other measures to reduce the chances of contracting or transmitting COVID-19. These measures include the use of personal protective equipment like cloth masks and gloves. Though gloves aren’t used when communicating with clients, intervenors remain diligent with washing and sanitizing their hands when moving from one client to another.
Patterson explains that the organization’s approach is one of universal precautions, which means avoiding all contact with bodily fluids. Additionally, staff members are prevented from working at more than one site and all visits from family members have been suspended.
According to Keyes, DBOS continues to monitor the progression of the virus and follow general recommendations made by health and government officials.
“Our eye is always on making sure that our clients are safe and that we eliminate as much risk as we can, whatever that looks like,” she said.
Patterson points out that individuals with congenital deafblindness are especially vulnerable to the virus as they are often dealing with several other medical conditions at the same time. In addition to that, it may not always be easy for them to communicate how they are feeling to those caring for them, given that they have been experiencing deafblindness since birth.
“A lot of people can’t articulate when they're not feeling well,” explained Patterson. “We really have to rely on our observation skills and our relationship with clients because they're not going to be able to tell us that they have aches and pain or a fever.
“That also is another level where we've really had to step it up.”
As of now, DBOS has not reported any cases of COVID-19 in any of their facilities across the province.
GOVERNMENT HELP FOR INTERVENORS
Last week, the government of Ontario announced measures to support those working in intervenor services. This includes eligibility for a pay increase of $4 per hour as well as greater staffing flexibility. According to Keyes, this is a first for those working in intervenor services.
“We have never been identified in any sort of communication,” she said. “It would always be [developmental services] or some other sector that maybe we could fit into, but intervenor services has never actually been mentioned.”
Both Keyes and Patterson say they are ecstatic about the awareness and appreciation being given to those working in the sector.
“It definitely shows a step forward of how [the government] is recognizing that role,” said Patterson. “It really validates the profession.”
This validation feeds into the work being done by intervenors at DBOS, says Keyes. She explains that workers have had to get especially creative in terms of engaging with clients and brainstorming activities to boost morale and maintain an overall sense of positivity.
“It's a very confusing time for [our clients] – they’re not able to see their families, their loved ones [and] they’re not able to continue and enjoy regular routines within their community,” said Keyes.
Davis agrees that it is an especially difficult time for those with deafblindness, but says she hopes more awareness can be raised for those who share a similar experience.
“I just want people to be aware that a person who is deafblind has a much harder time in the world today,” said Davis. “A person who is hearing or sighted is able to access a lot of information using their sight and they're hearing…but that is not the case for a person who is deafblind.”