An advocate for disabled people in New Brunswick says she is seeing a growing number of people struggling to find home care workers.
Haley Flaro, executive director of Ability N.B., says there is a shortage of workers, in part because of the low wage they are paid.
"You do become quite vulnerable … we see people all the time where if there's not a worker tomorrow, they're going to have to admit themselves to hospital where they don't need to be, but there's nowhere else to get the care they need," Flaro said.
Kofi Ampong says that's a situation he has found himself in.
The 32 year old Moncton man is a quadriplegic and needs help to get his medication, to cook meals and to change his catheter.
He says on one occasion he was alone from Friday night until Monday morning.
"I tried to relax, I tried to be calm and I was trying to get by and hoping Monday would come."
Ampong, who is originally from Ghana, came to New Brunswick to attend university and has earned degrees from the University of New Brunswick and St. Thomas University.
In 2007, he was stabbed in the neck and chest three times outside a Moncton nightclub in an attack he says was racially motivated.
Ampong says he had contacted every home care agency in Moncton but none had a worker available on the weekend he was left alone.
His closest family is his father, who lives in New Jersey.
"I was stuck," Ampong said.
"My father was calling me during those times, calling me in the evenings to see how I was doing and I would lie to my Dad and say, 'I'm doing okay.'"
Ampong says the worst part of that weekend was when his condom catheter came off on Saturday night.
"When it comes off the pee goes into the blanket and it goes onto the soaker and so I was wallowing in my own pee."
"That is what I had to go through, to be here stuck in bed, stuck in my own filth for two and a half days. The blanket that I need at night to cover me reeked of pee — concentrated pee."
Flaro is not surprised by Ampong's experience.
'Our present staff, we're very concerned about them, I mean do the math. If you're paying $11 an hour for forty hours of work or less they're almost at the poverty level. In fact, we have some that are at the poverty level.' - Greg McKim, Co-chair NB Home Support Association
"I'd like to say I don't see too many of those stories but we're seeing them increasingly because of challenges with the system," she said. "We have a real shortage of workers. They're paid a really low wage for incredible work."
Flaro says New Brunswick hasn't planned for the aging population and home support needs of individuals.
"The easy solution years ago was, oh a person with a high level disability? Nursing home. And that doesn't make sense economically or socially."
Ability New Brunswick is a registered charity and non government organization that helps disabled people come up with a plan so they can remain as independent as they want to be.
Care workers lowest paid in country
Ampong has one care worker who has been with him for 14 months.
It was Bernadette LaPointe who found him that Monday morning after he spent the weekend alone.
"He was very bad," she said. "Spasms was severe, shaking from head to toe, trouble breathing, stress level over the catheter overflowing up to his own body and [he] ended up with infection over it."
Greg McKim says the province needs a lot more care workers such as LaPointe.
'Flyers at the laundromat and Kijiji would be the top two ways I've observed of recruiting workers in New Brunswick and that is sad, it's scary and it's just a sign of the systemic problem that we're having.' - Haley Flaro, Ability NB executive director
McKim is co-chair of the New Brunswick Home Support Association and also runs a home care agency of his own.
The Association represents 44 agencies in the province, which employ more than 3500 homecare workers.
"The challenge is that the average age of our staff is around 54 years old and we're not getting those younger people coming in because they can go work for a coffee shop and get better pay or at least as good of pay, some benefits, consistent work," McKim said.
He says he pays his workers at least $11 per hour.
"Other provinces would pay trained workers anywhere from $15 to $17 on average."
McKim says the Department of Social Development contracts agencies in the province to provide care and pays $16 per hour for that care.
But after paying overhead, training, insurance and other expenses, he says he can't pay his workers anymore.
"Our present staff, we're very concerned about them, I mean do the math. If you're paying $11 an hour for forty hours of work or less they're almost at the poverty level. In fact, we have some that are at the poverty level."
McKim says his staff turnover rate is 30 per cent annually.
Finding workers left to individuals
In New Brunswick it is usually a social worker who assesses individuals to determine what care they need, and whether they qualify for provincial support.
'People are fighting so hard to stay at home and be independent and it shouldn't be a fight, it should be a right.' - Haley Flaro, Ability NB executive director
The Department of Social Development provides a list of agencies in the area but finding workers is up to individuals.
Flaro says in many rural areas there are no home care agencies available and people have no choice but to hire privately.
"Flyers at the laundromat and Kijiji would be the top two ways I've observed of recruiting workers in New Brunswick and that is sad," Flaro said. "It's scary and it's just a sign of the systemic problem that we're having."
Bernie Auffrey of Shediac is currently trying to find workers to care for his mother who is 102 years old.
He says they have hired workers through two home care agencies for day shifts but the weekends and evenings are more difficult, so he has posted an ad online.
"There's no real way I can do a background check on them, just check references and see who they are."
Auffrey says so far he has been lucky with the people who have responded to his ad.
Ampong has also hired many home care workers privately over the years and he says with no resources to check their backgrounds he has had problems.
Ampong is currently facing criminal charges including forging documents and extortion in relation to his dealings with home care workers he hired through online ads.
He accuses one of stealing money and another of filing billing forms with false information.
He says he trusted workers to fill out the forms correctly.
Ampong denies the allegations, none of which have been proven in court.
Flaro says it may sound shocking that vulnerable people are left to hire their own workers but it is a norm in New Brunswick.
"We encourage contracts, agreements, even if it's on a napkin — these are my responsibilities and these are yours."
Pressure to enter nursing homes
For Bernie Auffrey and his family, the other challenge has been paying for 24 hour care for his mother.
Since she doesn't qualify for provincial help, Auffrey says the family is paying for the care and he has remortgaged his home.
'I know there's a lot of cuts but warehousing people in these homes isn't the answer either. She's seen a lot of changes in her time — 102 years — so as far as I'm concerned she deserves it.' - Bernie Auffrey
The family pays $11 per hour and at the end of every month, Auffrey pays between $4000 and $5000 for home care.
Auffrey says It would be very different financially if his mother entered a nursing home.
"It wouldn't cost us anything in the nursing home because they'd just take Mom's cheque and it would be gone," Auffrey said.
"We use her cheque just to run the household … and I guess the house would just be sold if she was in a home, we never really looked at that we've always just focused on keeping her here."
Auffrey says even though it is difficult he believes his mother enjoys a better quality of life at home than she would in a nursing home.
"I know that she's happy here and she gets a lot of visits where I know that at nursing homes people just don't go in to visit anymore, and not only that — she holds the family together still."
"I know there's a lot of cuts but warehousing people in these homes isn't the answer either. She's seen a lot of changes in her time — 102 years — so as far as I'm concerned she deserves it. Everyone does."
Provincial government promising announcement
Flaro says New Brunswick has done a poor job of planning for the aging population and increasing number of people with disabilities.
"You know we're going to continue to hear these stories until we start to take a really strategic look at what has to happen," she said.
The New Brunswick government says it has a strategy for home care which it calls 'home first.'
A spokesperson said the Minister of Social Development, Madeleine Dubé, would not be available to do an interview and that an announcement on home care is "coming soon".
In the 2014/2015 New Brunswick budget the finance minister promised $7.2 million for home based care and supports to help seniors stay at home.
McKim says the home care associations now require all staff have a 240 hour training course and in exchange it's up to the government to make an investment in those workers and the people they serve.
"You see a number of announcements where we're investing in businesses coming in here for jobs," McKim said. "We can hire people...we're a significant employer but yet we're not getting that corresponding investment and my question is why?"
"We have the need, we have people, we have the process to train them — this would be just a no-brainer type of decision."
Flaro says the benefits of investing more in home care would be huge in New Brunswick.
She says the province is placing far too many people in care homes who don't want to be there and who shouldn't be there.
"People are fighting so hard to stay at home and be independent and it shouldn't be a fight, it should be a right," Flaro said. "Diverting people from nursing homes saves money."