People with disabilities forced to rely on family as PSW options dwindle

The coronavirus pandemic has forced some people living with disabilities into a difficult choice — either suspend visits by personal support workers (PSWs) and find alternative care, or continue them and risk infection.

Many have chosen the first option, meaning partners and other family members have had to take over their care. For some, that has eroded their already fragile sense of privacy and independence.

"That's the feeling I get, that my autonomy is threatened," Liz Winkelaar said during a recent virtual meet-up with other friends dealing with disability issues.

Until recently, Winkelaar was leading the Propeller Dance Company's performers in a groundbreaking showcase. Now she's spending a lot more time indoors, doing what she can to safeguard herself against COVID-19.

That means reducing the number of people she comes into contact with, including her trusted PSWs.

"Now, it's all between me and my husband," she said. "He's doing the lion's share of everything."

Fear of contracting COVID-19

Winkelaar's friend, Christine Malone, said there's a lot more at stake for people living with disabilities.

"There's a big fear out there about how do I protect myself?" she said.

For people living with disabilities, there's an added element of trepidation when it comes to navigating the health-care system. 

"I don't want to be put in a situation where I have to then self-advocate in [what is] a very precarious situation to begin with," she said.

So the option of PSW support, even for menial tasks like house cleaning, is off the table for now. 

"I Swiffered my floor and it took me a good four hours yesterday and I was exhausted," Malone said. "You don't realize how much that's going to impact your ability to be functional afterwards, so all of that has an impact."

Christina Johnson, another friend who joined in on the virtual meet-up, said she's become more risk-averse.

Johnson has a condition that can affect the muscles that help her breathe, and her medication has left her with a compromised immune system. 

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"I'm looking in the long term in terms of quarantining," Johnson said. "Regardless if the province opens up in the next month or two, I've set myself a plan to really not go out for maybe a year or so."

Johnson's partner is able to provide the support she needs to make that plan work. 

Relying on family

Long-term care homes are actively recruiting PSWs, offering pay bonuses, housing and travel incentives to work during the pandemic.

As a result, many people who have relied on home visits by PSWs have no choice but to lean on others for help right now.

Helen Ries shares a home with her brother Paul, who has Down syndrome. She said the respite care provided by PSWs gave them both the independence they needed to make the arrangement work.

"When he has support, he's a roommate," Ries said. "Without that support, he's a dependent ... so it's a very different relationship, and it's not fun for anyone."

According to the Ontario Personal Support Workers Association (OPSWA), family members like Ries might be without that support for a while.

"People that were receiving respite care, longer meal preparation hours … they're not receiving that anymore," said Lindsay Couture, who sits on the president's council of the OPSWA.

Couture said government-funded community hours for respite care have shrunk by more than half during this pandemic as the government redeploys PSWs to long-term care homes. 

That change in focus comes at a cost, according to Couture, who said she's worried about the long-term impact on the health-care system. 

"These caregivers need a break," Couture said. "The whole situation is a  mess right now and there's so much inconsistency…. Caregivers are going to get burned out."

​​​​Ries agreed, saying if supports for people in her situation dry up, the long-term consequences will be much more costly. 

"I think it's probably a misplaced focus to turn the bulk of supports to residential care," Ries said. "Because supporting my brother in his home keeps him out of long-term care and out of the system."