Woman with cerebral palsy wins right to live independently, but fight for control over her care isn't over

Winning the right to live independently in Winnipeg was only half the fight for a Portage la Prairie, Man., woman living with cerebral palsy.

Helen Roulette still wants the provincial government to transfer her care to an agency that will let her choose her own caregivers. 

"I want to hire my own staff because I need to trust them," she said in an interview with CBC News, with the help of her assistant, Tracey Lilley.

Last summer, Roulette said the provincial government told her she would have to move into a group home after living on her own for more than a decade.

For the past 10 years, Roulette has lived alone in an apartment supported by the provincially operated Community Living disAbility Services.

In 2017, she asked that her care be transferred to a different provincial agency, called In the Company of Friends. That agency allows clients to choose where they live and who their caregivers are and determine what their needs are, with an approved budget funded by the province.

That request was denied, and Roulette was told she would have to move into a newly built Portage la Prairie group home with three other residents in September.

Now, she says the province is allowing her to move to Winnipeg, but she still won't receive her care through In the Company of Friends.

"I'm going to go with another agency for now and work on my dreams, my goals, live on my own and have my life the way I want it," Roulette said.

She receives one-on-one care around the clock to help her dress, eat and bathe.

"It's different than you and me," said Lilley. "This is everything, her staff does. It's very important to her that she has a choice in those people that are doing those things for her."

Questions remain about care

The move to Winnipeg means that Roulette will be closer to her family, including her brother, and provide her with more opportunities to do activities she enjoys, like dancing.

Roulette also wants to go back to school to study social work.

Although she's glad she won't have to live in a group home, she's frustrated that she had to fight for so long just to maintain the kind of life she currently has, and she's disappointed her care won't be provided by ICOF.

Lilley has known Roulette, now 31, for more than a decade. Lilley was Roulette's educational assistant at her high school, Portage Collegiate Institute.

She wants people to understand that although Roulette has a team of people helping her, she advocates for herself.

"I am very proud of her. Sometimes people see her, and they don't see her," she says. "This is her doing this — nobody telling her what to do."

Many questions about Roulette's care remain unanswered, including when she will make the move to Winnipeg and what agency will handle her care once she does.

She also doesn't know why the province won't agree to transfer her care to ICOF.

'She's not giving up'

In an email, a provincial spokesperson said Community Living disAbility Services continues to provide Roulette with 24/7 assistance.

"A service provider developed a new, accessible group home for people in the region who receive supports through [Community Living disAbility Services]. It was offered as an option, but the individual has indicated she would prefer to move to Winnipeg," the spokesperson wrote in the email.

"CLDS will continue to provide support with the planned move. A Winnipeg-based service provider will be selected to help ensure she continues to receive supports, but that agency hasn't been chosen at this time."

Roulette remains determined to make her own choices about who her caregivers are, Lilley says.

"She's won to a point, but she still really wants to be with ICOF. She's not giving up."

With files from Donna Carreiro.