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N.B. family speaks out after home-care fees increase 4-times the amount they were previously paying

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Cindy Sullivan is leaning on her husband, Lester, as she slowly trudges forward, trying to walk outside onto her patio.

She loses her balance, and sends her body into Lester’s who has to brace himself against the door. The two avoid a fall.

But if Lester wasn’t there, getting outside wouldn’t be feasible for Cindy.

The 59-year-old was diagnosed almost 30 years ago with a condition that sees her cerebellum degenerate impacting her movement and coordination, vision and language.

The former legal secretary says she hates asking for help – but her reality forces her to.

“I’m independent, I hate other people doing stuff for me,” she says in a slow but pronounced voice.

The couple live in Janeville, N.B., 15 minutes north of Bathurst. Their home has railings and bars throughout, with a flat, carpet-less floor. Cindy mostly uses a wheelchair, although Lester says it’s good for her to try and use a walker a little each day to help her leg muscles.

She’s bound to the main floor, wheeling from the kitchen to the living room to the bathroom. She says she doesn’t get out much.

Twelve years ago, Cindy had a bad fall. It landed her in the hospital for six weeks – that’s when the department of social development was called.

“She had a personal support worker with her Monday to Friday. There was an environmental assessment done on the house. You can see that there's bars and rails. She has a walker, wheelchair and a ramp outside and she had a falls alert alarm set up at home so that at times when she was alone, if something happened and she would be able to call for help,” explains Cindy’s sister, Amy McLeod.

Amy is Cindy’s biggest advocate – other than her husband Lester – and has been a registered nurse for decades. She’s acutely aware of Cindy’s reality.

“Her condition's not going away. Ever. It's a lifetime progressive degeneration. It's never going away. Our responsibility is to support them, to be able to live a quality, self-determined life,” she says.

Since that hospital stay, the couple has co-paid for the services provided by the province's Department of Social Development.

The amount has been reassessed a few times. Last year they were paying $680 a month.

However, they were told they’d have to start paying more since Lester turned 65 and could access old age security. With that news, they were preparing for an increase of about $1,000 to $1,200.

They were reassessed at $1,500.

The couple appealed. They say the cost went up again, to over $1,800.

Again, they say they appealed.

As a seasonal worker, Lester was laid off over the winter. He was trying to find other work – when another reassessment came back.

This time, the couple says they were told by the home care company their portion would be $2,810 a month, and they were to start paying it in March.

Rather than return to work, Lester made the decision to stay home with Cindy – unable to afford that amount.

“I can’t leave her alone. So this is what it comes to, I stay home. That’s the way it’s going to be,” he said.

Cindy’s sister says by all accounts, their file has been closed by social development – including her access to the falls alert system.

“We’re not pointing the finger just at social development because, as was pointed out in Kelly Lamrock’s report on social development, the failures are across social programs in New Brunswick, or across the board,” she said. “Social development is following their rules, regulations and protocols, right? It's not like they're just randomly saying, 'Yep, you can do this and you can do that.' And that's the problem... The situation just epitomizes the short sightedness of a system that is prioritizing fiscal compliance over human dignity.”

Lamrock, the province’s child, youth and seniors’ advocate, released two reports in March outlining changes needed within the province’s social programming – specifically that individuals need to be assessed on a case-by-case basis, not trying to fit them into a pre-determined box.

A spokesperson for the department said they can’t speak on individual cases, but that there’s been no changes to their formulas for clients receiving home services.

They did say that a client turning 65 can have an impact.

“If a client is receiving a government subsidy, it is their responsibility to inform the department of changes in their financial situation that will affect their subsidy levels. Those changes include…a client that turns 65-years-old and is eligible for programs like Old Age Security or Guaranteed Income Supplement,” said Kate Wright, communications director with the department.

Wright also stated that this process would not close a client’s case “unless the contribution amount exceeded the cost of services, or that the client had not submitted the requested documentation to conduct a financial assessment.”

At this point, Lester and Amy say they can’t leave Cindy home alone. They want her to be able to age at home, and are worried she’ll have another fall and they’ll have to turn to long-term care.

When Lester needs to leave, Cindy and Amy’s 80-year-old mother comes over to help.

“There's so many things that need to be fixed in order to be able to give the people dignity, to be able to live the life that they choose and the environment that they choose. And to feel like their life is worthwhile,” says Amy. “And they're not a, you know, a drain on the system, but as you can see by meeting Cindy and Lester, they are the sweetest people in the world.”

For more New Brunswick news visit our dedicated provincial page.

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