'It's pretty isolating': St. John's mothers needing respite care want more awareness, training
Better wages for workers and more funding for families are also crucial, they say
CBC's series Concerning Care takes a closer look at home and respite care in Newfoundland and Labrador, which has Canada's oldest population. It focuses on a shortage of workers, the emotional and financial toll of loved ones providing care to family members, and issues that home-care workers themselves face.
For 12-year-old Claire McDonald of St. John's, occasionally doing things without her parents — like going rock climbing or shopping — is as important as it is for any other pre-teen.
But Claire needs help to do these things. She has cerebral palsy, epilepsy, autism and post-traumatic stress disorder, and she uses a wheelchair.
Yet her activities are possible, says her mother, Jeanine McDonald, thanks to respite care.
"For us as a family, it's extremely important," said McDonald. "I don't know what we would do without it, basically."
Respite workers are support workers who temporarily take over for a caregiver, most often a family member, giving them a break.
In Newfoundland and Labrador, 8,602 people had received either home or respite care through the provincial home support program as of July, according to the provincial Health Department.
Claire needs help with most daily tasks — moving into and out of her wheelchair, getting dressed, using the bathroom, taking medication, personal care and sometimes also with eating.
Having had 15 hours of respite care weekly for the past four years was a blessing for Claire's parents.
"We're her occupational therapist, we're her physiotherapist, we're her teachers, we're her doctors, we're her nurses.… We fulfil a role that goes beyond being a parent," said McDonald.
"Parenting never stops, but for parents of special needs kids, it's a continuation right through adulthood."
For Claire, her two respite workers are much more than helpers — they're older sisters, best friends.
"It's important for her because a lot of kids and a lot of young adults don't have those friendships and bonds with other kids because of their abilities and their difficulties," said McDonald.
But as a board member of the provincial Cerebral Palsy Association, McDonald knows many families haven't had as smooth of a process as hers.
Another 'disappointing' experience
About seven kilometres away, in another St. John's home, Elizabeth Counsel lives a different experience.
Her eight-year-old son John has autism, is nonverbal and self-harms, and behavioural issues keep him out of daycares and after-school programs.
"He's a happy little guy most of the time. But he does have a lot of challenges that most kids don't have to address," said Counsel.
John needs help using the bathroom, getting dressed and eating with utensils. He also requires a lot of sensory input.
When he started kindergarten, Counsel went back to work — and the family's search for a respite worker, hired privately, began. Most of the workers they hired left after only a few weeks.
In need of support, the family approached Eastern Health and, after an extensive application process, hired a home support agency.
"It was a pretty big fail," said Counsel. "There was a lot of, just, incompetence.
"Some of them didn't even understand what autism was."
Counsel said some of the workers spent the day on their phones, ignoring John. Others weren't able to cook meals or prepare snacks, didn't know what to do with dirty laundry or flushed baby wipes down the toilet.
In addition, a new worker came to the house almost every day.
"We did it for months and at the end of it, we fired the agency and I ended up having to quit my job to pick up the slack," said Counsel. "It was really disappointing for us."
Recognize the work for its value
Counsel says a clearer definition of different job roles is needed so workers can better support families.
"Maybe some jobs are just keeping someone company and being a warm body in the house. And that can be one type of work. But then there's people who have to do everything for another individual," said Counsel.
"Some of these things could be a career … but we're not even treating it like it's an actual job."
That's why it's crucial the work gets recognized for its value, she said — by agencies, workers and society generally.
"Even Eastern Health, the first thing they ask you is, 'Do you have someone who can do this for you for free?' You don't ask someone to do a job for free. This is not a hobby," said Counsel.
"No, this is a job. An important role that you're taking on. And we have to treat it that way."
McDonald agrees that more training might help professionalize the workforce.
"There's no actual career as being a respite worker. Why not? Why can't there be a couple months' training course into a college or a trade school … like they do with other trades?" said McDonald.
"Maybe that might encourage people to take it on as a field of work versus just a job."
Increasing workers' wages and offering benefits would also make the field more attractive, she said.
"I would give my girls the world, honestly. They're worth a lot more than their $15 and change an hour," said McDonald.
"They're my family. They do things with my daughter and they provide for her like I provide for her."
'I'm just kind of holding onto every day'
Of the estimated 8,500 home support workers in the province, about 4,500 are employed by an agency in agreement with the Newfoundland Association of Public and Private Employees. They receive $16.95 hourly, with an increase of 10 cents an hour due April 1.
McDonald also wants to see more financial support for families. Those ineligible for funding have to pay for all or part of their respite care out of their own pocket.
It's a scenario familiar to McDonald — due to her income, she said; the family didn't qualify for funding, but the cost of respite care devoured more than what she earned. So she decided to give up her job.
Now the McDonalds access Eastern Health's special child welfare allowance program, which provides financial support to families of an underage child with a disability. The application process includes extensive paperwork, every year.
"You have to give up everything, your bank accounts, your [statements] — there's no privacy left," said McDonald.
"It's a little demeaning. It's a little intimidating. Unfortunately, some parents don't have it in them anymore to fight."
While the family has help at the moment, McDonald knows it's likely not forever.
"If you go online, you'll see hundreds of ads of adults and young children just looking for help," said McDonald.
"I'm lucky but one day, my girls may move on. I might not be that lucky anymore. I'm just kind of holding onto every day so far for myself and my daughter."
For Elizabeth Counsel, the search for a respite worker will likely start over soon, as she wants — and needs — to go back to work.
Counsel hopes that, somehow, the process will be easier this time, and that public perception of respite care will change.
"The public has to realize that this is a problem," said Counsel.
"There has to be more of an outcry saying, 'We can't let families who have needs be ignored.' because it's pretty isolating."
Concerning Care tells the stories of the people introduced here, along with others, on various platforms — including on Here & Now, CBC N.L.'s website and on the radio.
If you have a story to share, contact us at [email protected].
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