Changing the Conversation - Getting Families on Board:

Using a person-centred approach, Dunne started a conversation with individuals and their families. “I started talking about ‘Well all of us have a doctor, all of us have these things that we need, and sometimes we have to have more intensive supports, sometimes we don't,’” he says, “Everybody has different levels of what that need might be, but I'm still a person, and I still have hopes and dreams for my life and what I might like it to be in the future.” 

By taking parents through a visioning exercise, asking them to imagine the best possible outcomes for their children, and how they might see them living in the community regardless of their abilities, Dunne moved the conversation away from, “Focusing just on their physical or medical needs, but really focusing on the person and their life, and what it might be,” he says. He discovered that while parents wanted a better future for their children, many still couldn’t picture their sons or daughters living independently. 

In 1988, PHSS opened their first location, a one-floor South London home, for three women with medical complexities who wanted to live together.  “And it was a big deal. This was a really big deal for the Ministry,” says Dunne, “We switched the thinking, that people could live with any kind of abilities in the community, obviously with the supports that they need.”

Long Term Ventilation - The Evolution of PHSS:

Over the years, PHSS learned of other individuals in the medical system who were considered medically fragile, and had very few options, like Michael, a 17-year old diagnosed with a brain tumor. After his surgery, he was living in the ICU of the hospital, “But the hospital didn't want him living [there] because he didn't need to be there,” says Dunne, “But he was ventilator-dependent now, and no agency would support him. So the hospital reached out to us.” PHSS expanded their services to include medically fragile and ventilator-dependent individuals, enabling Michael to live his final year and a half to the fullest. 

PHSS is currently the only organization in the province with designated ventilator-dependent protected beds, which enable them to support at least eight ventilator-dependent individuals in the community, for the cost of basic care for just one person in the ICU, says Dunne. Additionally, this frees up ICU beds – which studies predict will be at a premium as the population of Canada ages(4) – and enables a lifestyle that would not be possible in the hospital. 

“Anybody should have the opportunity to live in the community that wants to. That shouldn’t be a fight for people to be able to get the supports they need,” says Dunne, “They shouldn't have to go to places that aren't really where they want to be or not appropriate for them. They shouldn't have to live in the hospital if they don't need to. It's not good for the system, it’s not good for the person, it’s not good for the community. And I think a good, healthy community can support all its citizens.”

Donnie Antony, Executive Lead of New Directions and Opportunities at PHSS, says that once in the community, these ventilator-dependent individuals, “Have [more] planned in a week than what I ever do!” For instance Ricky, a young adult who was previously living in the ICU with muscular dystrophy, requiring chronic mechanical ventilation, became a well-known individual in the community on returning to it. “He went to hockey games regularly, he was in a personal relationship, and shared his musical talents on social media. He was very active, everyone knew him, which would not have happened in the hospital setting,” says Antony, “He had a full life.”

Advancing the Person-Centred Approach - Participatory Action Research:

Seeking a process to evaluate the quality and impact of their care, PHSS found that the Participatory Action Research method resonated with their person-centred approach, and adopted the tool in 2000. “We always heard, ‘You're a great service,’” says Dunne, “But I said, ‘We don't have any way of really measuring that.’”

Participatory Action Research uses self-reflection from researchers and participants, and empowers participants to have more control over their lives, with an emphasis on action.(5) “If I'm in your home and you say something has not happened that can be fixed, it doesn't have to wait two months, it can be fixed right away,” Dunne says. 

“That's been a really key driver for the organization, because it includes people we support, their families, staff, board members, community members and funders – everybody is interviewed in that process,” he says. 

Dunne and his team are working to share their person-centred care approach with the broader medical community, through a study in partnership with Schulich School of Medicine & Dentistry.  They most recently presented their initial research findings at the International Conference on Integrated Care, hosted by the International Foundation on Integrated Care, in Belgium this year, with representation from 60 countries. “[I’d] encourage other organizations to really look at themselves and say, ‘We've got some really good things going on here that might be worthy of having some research done to increase learning and knowledge.’”