Care homes for disabled people mostly, but not fully, gone

Long-term institutional care homes for people with disabilities are mostly a thing of the past in B.C.

But one of the few remaining facilities, the George Pearson Centre in South Vancouver, still houses 114 residents, and is scheduled for a modernizing redevelopment in 2018.

But according to some residents who live there, modernizing the facility won't solve its problems.

"Pearson is an extended care hospital based on a 19th century industrial model of delivering care and it's impossible to have freedom and dignity in such a model," said former resident Paul Caune.

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Caune has muscular dystrophy. He uses an electric wheelchair and spent two years living at Pearson to help with his mobility challenges.

He says that places like the George Pearson Centre have no place in 2015.

'Sufficient for a potted plant'

Daniel Gladstone currently lives at Pearson and sits on the facility's residents' council. He says that the rules and structure imposed there limit residents' abilities to live free and dignified lives.

"They do not persecute people. They do not, in any way, attempt to diminish their dignity," he said of the attitudes held by staff and administrators at Pearson.

"But yet, there is so much more to what I consider life. The quality of life is sufficient for a potted plant."

Gladstone cites rules like enforced curfews that limit residents' abilities to live free and dignified lives.

He says he would rather live in his own apartment with health care support but has had trouble finding affordable, accessible housing.

'Scary, disgusting, infuriating'

Paul Caune lives independently in an apartment now, but says he was subject to arbitrary rules and even abuse from staff while at Pearson.

One time, he wanted to go to bed at 10 p.m., but the nurse on duty wanted him to go to bed at 9 p.m.

"I kept on disagreeing with her, and I had had a bowel movement. And she threatened me, that if I didn't go to bed at nine o'clock from now on, then she would leave me laying in my own bowel movement. And she did."

Caune complained the next morning. He says the nurse apologized and he was told she had a note put on her file regarding the incident. But that didn't make it better.

"It was scary, it was disgusting, and it was infuriating," he said.

A different take

Bob Chapman is the director of residential care at Vancouver Coastal Health. He says residents do have recourse if they believe they have experienced abuse.

He says they can speak to staff, the manager, the province's patient care quality offices, the licensing body, various professional colleges, the ombudsperson, or pursuer a human rights complaint.

But with the facility itself modernizing soon, will residents experience more freedom and independence?

"I think when you live in a communal environment or care facility setting and you're actually living with a large number of people, you're living with staff who are supporting a large number of people," Chapman said. "We do our very best to accommodate personal needs."

"I think the Pearson residence and probably the disability community are aligned … and asking for staffing models that are a bit more flexible around allowing for a bit more community integration."

Not every resident has had such negative experiences at Pearson. Hansu Siirala has spent eight years living there after two strokes left half her body paralysed.

"I'm not ready to live on my own. I'm still partially paralysed and can't do many things for myself," she said.

She says that the prospect of change coming along with the redevelopment have her worried.

"I don't think they'll be able to provide some of the core services they can now. It could make many of us more isolated. They have a really good recreation program right now where they take us out shopping and for entertainment and such and I worry they won't have that when they build the new centre."

In Dignity: Disabilities, Freedom and the Fight for Security is a series from On The Coast, CBC Radio One's Vancouver afternoon show that explores the issues of dignity and quality of life faced by British Columbians with disabilities. The series runs Oct. 13–16.

Tune into On The Coast 3–6 p.m. on weekdays at 88.1 FM and 690 AM. In Vancouver. Follow us online @cbcvancouver