Manitoba woman fights to live independently, says move to group home 'a basic human rights violation'

After more than a decade of living on her own, a Portage la Prairie, Man., woman who lives with cerebral palsy says she is being forced to move into a provincial group home.

'No one is listening to … my rights as a human,' says Helen Roulette, who lives with cerebral palsy

Helen Roulette is advocating for the right to continue living independently. (John Einarson/CBC)

A Portage la Prairie, Man., woman who lives with cerebral palsy says she is being forced to move into a provincial group home after more than a decade of living on her own. 

Critics call it a cost-cutting move that's a violation of her rights.

"I'm so mad," Helen Roulette, 31, said in a written statement to the CBC.

"I feel no one is listening to me, my choices, my rights as a human and what I am saying."

As a result she is considering filing a complaint with the Manitoba Human Rights Commission, she said.

"It's a basic human rights violation."

For the past 10 years, Roulette has lived alone in an apartment supported by the provincially operated Community Living disAbility Services. She receives one-on-one care around the clock to help her dress, eat and bathe. 

Helen Roulette, left, holds Dana Johnston's hand as she talks about her efforts to stay out of a group home. (John Einarson/CBC)

In 2017, however, she wanted to take a further step toward independence, and began advocating to move out of the care of the current agency and join a different agency called In the Company of Friends, created by the province in 1993.

ICOF's funding model is simple: clients self-manage their lives, including where they live, who their caregivers are and what their needs are, with an approved budget funded by the province.

If approved, Roulette's needs would not only be covered, but her desires, too.

"I want to move to Winnipeg," Roulette said. "I want a dog, too."

However, she says her request was denied.

Her only option, she said, will be to enter a newly built Portage la Prairie group home this September where, after a decade of living on her own, she'll now share a space and support workers with three new roommates.

"But Helen has clearly said 'I'm not moving. I'm not moving with three other people,'" said Dana Johnston, a  resource co-ordinator with Innovative Life Options, a non-profit organization that helps Manitobans become clients of ICOF. 

"She's lived on her own for so many years. Why now?"

'It's going backwards'

Rod Lauder says it boils down to the bottom dollar. He is the advocacy co-ordinator for Inclusion Winnipeg, which advocates for Manitobans living with intellectual disabilities. 

"[The province's] concern was money," says Lauder, who helped Roulette apply for the funding.

"If you combine her....care with other people, instead of having a one-on-one person stay with Helen 24 hours a day, seven days a week, now you can have a four-to-one ratio. You're saving money."

But the savings, he says, come with a cost.

"The problem is that might not actually meet what the person needs to live a good life," he says. "It's going backwards."

'I understand her'

Colleen Maruk agrees. Maruk, also 31, lives with schizencephaly — the symptoms of which can include seizures and problems with brain-spinal cord communication. She too requires around-the-clock care. Four years ago, through ICOF, Maruk took charge of her finances, care and lifestyle.

She lives in a small, brightly decorated Winnipeg apartment with electric pink pillows and a collection of favourite TV shows and movies, and is supported by a team of five personally selected caregivers.

"I'm happy that I'm living independently, because I have a chance to make my own decisions," she said, with the aid of a computer.

Most often, however, she and her staff don't bother with the computer to communicate. They have such a close relationship, she says, they don't need to.

"We just talk through our eyes, our actions," says Lorna Swaykoski, her team leader. "I understand her."

Longtime caregiver Lorna Swaykoski, left, and client Colleen Maruk share a close connection. (John Einarson/CBC)

That's the kind of lifestyle Roulette is fighting for, she says.

The province, however, told CBC News that's not likely.

"Community Living disAbility Services does not generally approve one-bed homes for people who require 24/7 support," a spokesperson said in a written statement.

"Clients with accessibility needs such as Ms. Roulette may live in a one-bed residence with 24/7 support if they are the only accessible vacancy in the region until a suitable group home can be found."

Lauder said that doesn't bode well for the future of agencies like Innovative Life Options, Inc.

"I think the government is consciously working at a way of knocking this agency out of being a service provider," he said.

Roulette said she'll continue to fight for it.

"Choice is something we all value in our lives, the right to make choices," she said.

"I want the same rights."

Click here to see the special connection between Colleen Maruk and her longtime caregiver Lorna Swaykoski.

Lorna Swaykoski describes how she communicates with her client Colleen Maruk, who requires 24/7 care in her home because she lives with cerebral palsy. 1:00