New survey shows home support for disabled 'deteriorated' during COVID-19

When COVID-19 shut down New Brunswick, Kaitlyn Layden had no idea whether anyone would be coming to her Saint John apartment to help her shower, cook, exercise or get her out of herwheelchair.

The 29-year-old has cerebral palsy and requires 46 hours of in-home support to live independently.

But for two long weeks, she said nobody came and nobody called.

"It was chaotic," Layden said."Everything was supposed to stay status quo but it definitely didn't."

Six months later, Layden has yet to see her care levels restored.

She receives 46 hours one week and 25 the next.

Part of the issue was her own fear of exposure.

Back in March, she asked that one of her workers stop coming to her north end residence because that person had other jobs and she didn't want to increase her risk of getting sick.

No replacement has been provided since.

Home support falters during the pandemic for New Brunswickers living with disabilities

4 years ago

Duration 1:14

Kaitlyn Layden says she's been leaning on family but 'they're tapped out.'

Meanwhile, she said, leaning on family can only go so far.

"I think I've tapped them out," said Layden.

"I would call my mom and be like, 'Yeah, I don't have service today.' She would ask if I had errands and I would tell her I just need a shower."

Research shows 'deterioration' of care

Haley Flaro, executive director of Ability NB, said her agency started hearing stories like Layden's as soon as the province went into a state of emergency.

Flaro's staff set out to call more than 300 people who need ongoing care because they've experienced strokes or brain injury or have conditions such as multiple sclerosis, spina bifida, muscular dystrophy, or arthritis.

"We had a home support worker crisis in New Brunswick before the pandemic and it escalated," she said.

A more formal survey conducted in partnership with the Stan Cassidy Centre for Rehabilitative Research, has now been released by Ability NB.

Of the 127 people who responded:

• 47 per cent said their access to Social Development had deteriorated, or greatly deteriorated, during the pandemic.
• 43 per cent said the amount of in-home support they received had deteriorated, or greatly deteriorated, during the pandemic.
• 31 percent said the quality of the in-home support they received, had deteriorated, or greatly deteriorated, during the pandemic.

"I think this is a wake-up call and we need to start innovating," said Flaro.

"In our future pandemic programming, we want our Department of Social Development to set a target to reach every person for a wellness check within five to ten days," she said.

"And to continue wellness checks during the pandemic because this is when people are hurting most and most at risk."

Flaro said she expects to present more evidence to the province upon completing a second research project with the help of funding from the United Way.

Its target is to survey another 1,400 New Brunswickers who are registered as living with a mobility disability.

"This is our social safety net," said Flaro. "This is the mechanism that's supposed to work the best for our vulnerable populations when the going gets tough."

"We have the second highest rate of disability in Canada. This isn't going away."

Home care agencies confirmdrop in service

New Brunswick's Home Support Association saidrecruitment and retention of workers has always been a challenge and COVID-19 added complications.

Some agencies said it was the clients who decided to suspend service because they feared that workers would bring sickness into their homes.

It's very hard to find people who want to come into the home care field.Our wages aren't great. Our benefits are null and void. There's no guarantee of hours.- Darlene Hood

There were also workers who refused to go into homes or refused to wear protective equipment.

Some workers ran into problems finding transportation or child care until child care was provided to essential workers.

Employers said they couldn't find replacements for the people they lost and couldn't compete with the Canada Emergency Response Benefit, which paid $2,000 per month.

Home support workers can make as little as $14 an hour.

"In the early phase, home care did drop," said association president Darlene Hood, who also manages an agency in Harvey with 23 employees.

"Like once we got through April and May, by June things were starting to turn back around," she saidca.

If we had clients who couldn't comply with rules set down by Social Development, we had to refrain from giving services."

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"If we had people with any immune deficiencies, we had to be really cautious about how we worked with them."

"I think a lot of our agencies worked to minimize the number of people going through doors."

As an employer, Hood said she could always use more help. Right now, she'd like to hire two or three more.

"It's very hard to find people who want to come into the home-care field," said Hood.

"Our wages aren't great. Our benefits are null and void. There's no guarantee of hours."

Job ad turns up no qualified candidates after 7 months

Jeff Sparks said he's been looking to hire privately since mid-March but the ads he's been posting on various job boards and social media sites have only drawn about eight expressions of interest.

Sparks said all of them were women and none had the physical strength to do what is required to help him manage in his Quispamsis home.

"Due to my physical limitations, I need someone who can lift," said Sparks, 45, who was born with spinal muscular atrophy and uses a wheelchair.

Even when the province agreed to include private home-care workers in a COVID-related wage top-up program, it didn't seem to make much difference attracting applicants, said Sparks.

However, he said he was thrilled that his loyal team of four full-time staff did qualify for the benefit.

Social Development responds

The former minister of social development, Dorothy Shephard, has acknowledged in the past that home support workers are underpaid.

Tuesday's cabinet shuffle saw her promoted to minister of health and the new minister of social development, Bruce Fitch, was not made available for an interview.

Instead, the department sent an email saying that the disability support program was deemed an essential service and continued to be provided during the first wave of the pandemic.

The department also said that home support services were maintained.

As the province moves into a recovery phase, the department saidit will continue to assess when and how additional services can be safely delivered.

"We are also working to identify any gaps in the system and how they can be addressed in the future," wrote department spokesperson Abigail McCarthy.

"The department looks forward to receiving and reviewing the survey."