Nfld. & Labrador

No holidays, but red tape abounds as caregivers in Corner Brook speak out about stress

After almost two years of taking care of an adult with intellectual disabilities, a couple in Corner Brook say they've had so few days off they've reached a breaking point.

The Kennedys say they've had about 12 days off in 2 years

Brenda and Gerard Kennedy say in almost two years of providing homecare, they've had about 12 days off. (Lindsay Bird/CBC)

It's barely 9 a.m., but the living room is rocking at Gerard and Brenda Kennedy's small home in Corner Brook, as Gerard squares off for a game of mini pool.

His adversary is Bradley Flynn. Flynn is upbeat, laughs easily at his wobbly aim, and greets strangers with a smile like a sunburst.

He also has intellectual disabilities, and came to live with the Kennedys in August 2017 under the province's Alternate Family Care Program, which places adults in similar circumstances to his in home settings, as opposed to institutionalization. 

It's a worthy cause, but one that's become wearing on the Kennedys, as they say a crucial part of that program's fine print isn't being met. In nearly two years, Brenda Kennedy said they've had about six weekends off — a far cry from the up to 54 days annually the program states it will provide to caregivers.

"You needs a break. He's no trouble, God love him, he's good. But I deserves a weekend off, and it's not fair," she said.

Flynn plays pool on the couple's mini pool table daily, and also bowls, rughooks and loves horror movies. (Lindsay Bird/CBC)

Holidays denied

Kennedy maintains the lack of holidays isn't for a lack of trying.

"Every time I call, there's nowhere to put him," she said she has been told by her program contacts.

Kennedy said she tried for a few days last summer, only to be told the care homes were too full. She tried again in October and said she got the same story.

With a use-it-or-lose-it policy, when the calendar flipped over, those vacation days disappeared, but she doesn't want to be compensated for the lost time.

"It's not about the money. It's about getting a break," she said.

"You turn on the radio every day, it's all about mental health, mental health. What about the caregiver's mental health, that's taking care of these people? Obviously the government don't care."

It's like the government puts them in your home, and tough titty, you're stuck.- Brenda Kennedy

Western Health administers the provincial program in western Newfoundland, where there are 51 licensed homes like the Kennedys.

The health authority refused an interview, and would not comment on the Kennedys' direct concerns, citing privacy issues. In an email it stated it discourages using the words "time off" as "these clients are meant to be integrated into the family." 

The email also stated that once a caregiver gives 30 days' notice, the social worker will go through a listing of alternative placements, or contact relatives.

Kennedy said Flynn's brother and sister are supportive, but can't take him for extended periods, nor should they be expected to.

On a fixed income, Kennedy said she and her husband aren't looking for flights to Florida. They want some downtime in their own house, free from responsibility.

The couple does receive $400 every two weeks for Flynn's room and board.

The Kennedys said they aren't making copious amounts of cash from the arrangement, a claim backed up by a quick sweep of their house. It's tidy but a little tired, the mini pool table, secondhand when it arrived, nearly worn out and kept level by a stack of Archie comics, like a physical reminder of frayed nerves.

Red tape

With the care home route seemingly closed off, the Kennedys began looking for other options, like sourcing another licensed home for temporary time away from Flynn.

They said all they ran into was overregulation and red tape.

Before Flynn came to live with them, the Kennedys went through a home inspection to get their house licensed under the care program, a process they said came at their own expense and involved new fire extinguishers and smoke detectors.

The Kennedys, with Flynn, centre, have known each other for years. Gerard Kennedy's sister was Flynn's caregiver before he came to live with the Kennedys. (Lindsay Bird/CBC)

Flynn spends six hours a day, Monday to Friday, in a daycare arrangement with other caregivers, who the Kennedys said were willing to step up to the plate and get their home approved for overnight stays.

But after an inspector's visit, that couple would have to get new windows installed in their home, and have an electrician change some wiring, at great expense.

"It's safe for him to be there for 30 hours a week, but not safe enough for him to stay there overnight?" questioned Brenda.

"It don't make sense." 

Western Health said in cases of financial hardship, it can help cover renovation costs. But Kennedy criticizes the inflexibility of the regulations in the first place, saying they discourage potential caregivers.

"They gotta change that. Something's got to give. How do they expect people to look after people like Bradley if they're not going to help?" she said.

"It's like the government puts them in your home, and tough titty, you're stuck."

The Alternate Family Care Program guidelines have not been updated since 2007.

Future concerns

Flynn turns 60 this month, but his energy belies his age. He bowls with the Special Olympics, rughooks, and any time Brenda or Gerard are running errands, he's ready to go, too.

With neither of the Kennedys young themselves, Brenda worries about what will happen to Flynn in a system that seems unwilling to make accommodations. Her worst fear is he ends up prematurely in institutionalized care.

"To take him and bar him in, that would be devastating," she said.

Flynn loves painting rocks, and many colourful ones adorn the Kennedys' property. (Lindsay Bird/CBC)

Despite the stress, the Kennedys don't regret taking Flynn in, and even if their complaints fall on deaf ears, they won't pull out of the program.

"This is his home and he's comfortable here," said Brenda.

"And I knows we're not perfect people, and we don't have what a lot of other people got, but he's well taken care of and he don't do without nothing."

Read more from CBC Newfoundland and Labrador

About the Author

Lindsay Bird

CBC News

Lindsay Bird is a journalist with CBC Newfoundland and Labrador, based in Corner Brook.