'It's pretty isolating': St. John's mothers needing respite care want more awareness, training

CBC's seriesConcerning Caretakesa closer look at home and respite care in Newfoundland and Labrador, which hasCanada'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 Claireneeds help to do these things. She has cerebral palsy, epilepsy, autism and post-traumatic stress disorder, and she uses a wheelchair.

Yether 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 workersaresupport workers who temporarily takeover for a caregiver, most often a family member, givingthem a break.

In Newfoundland and Labrador,8,602 people had receivedeither home or respite carethrough 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 careand sometimes also with eating.

Having had 15 hours of respite care weeklyfor the past four years wasa blessing for Claire'sparents.

"We're her occupational therapist, we're her physiotherapist, we're her teachers, we're her doctors, we're her nurses. We fulfila 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 respiteworkers are much more than helpers they'reolder 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 Johnhas 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 havea lot of challenges that most kids don't have to address," said Counsel.

Johnneeds helpusing 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 andthe family's search for a respite worker, hired privately, began. Most of the workers they hired leftafter only a few weeks.

In need of support,the family approached Eastern Healthand, 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 cameto 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 saysa clearerdefinition ofdifferent jobroles is neededso 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 crucialthe workgets 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 mighthelpprofessionalize 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' wagesand 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 8,500home support workers in the province, about 4,500are employed by an agency in agreement with the Newfoundland Association of Public and Private Employees. Theyreceive $16.95 hourly, with an increase of 10 cents an hour due April 1.

McDonaldalso wants to see more financial support for families. Those ineligible for fundinghave to pay for all or part of their respitecare out of their own pocket.

It's a scenario familiar to McDonald due to her income, she said;the family didn't qualifyfor funding, but the cost of respite care devoured more than what she earned. Soshe decided togive up her job.

Nowthe McDonaldsaccessEastern Health'sspecial child welfare allowance program, which provides financial support to families ofan underagechild 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 hashelp at the moment, McDonaldknows 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 Caretells the stories of the people introduced here, along with others, on various platforms including onHere & Now,CBC N.L.'s website and on the radio.

If you have a story to share, contact us atcare-struggles@cbc.ca.

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