Making choices, finding their voices Society slowly evolving on how to properly support, include those with developmental disabilities as the era of institutionalization comes to a close in Manitoba By: Melissa Martin Posted: 7:00 PM CDT Friday, Aug. 5, 2022

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This article was published 05/08/2022 (909 days ago), so information in it may no longer be current.

On a sunny July afternoon, in the backyard of a one-storey home on a quiet suburban street, Peter sits on a shaded loveseat, cradling an iPad on his lap. He greets his visitors briefly with a wave of his hand, then turns his attention back to the screen. He beams as a familiar tune jangles from the tablet: it’s the theme song to iconic game show The Price Is Right.

Is that the most popular show around here?

Jovanie, one of several support workers at the house, chuckles.

“It’s the only one, actually,” Jovanie says, cheerfully. “We show him other choices, but still, this is his favourite.”

When the house was built in 2017, Peter was one of the first to move in, and Jovanie, who had moved to Winnipeg from the Philippines just a year earlier, was one of the first staff members. They’ve gotten to know each other well over the five years since — at least one worker is always on site, day and night — and they’ve gone on a lot of adventures.

If the day is nice, Peter likes to walk to a nearby McDonald’s, where other regulars have come to know him, or to the park, or to the bank. Swimming is also an option — or was, before the pandemic — and if Peter or his two roommates want to go on a day trip, like to Gimli, their support staff will drive them where they want to go.

“If Peter wants,” Jovanie keeps saying. This is Peter’s home, after all, and so the shape of his days is his own.

Peter doesn’t speak much, but he can clearly express his thoughts, his needs and his wishes. He’ll tap on his wrist, as if at a watch, to indicate when it’s time to do something, and Jovanie usually knows what. If someone asks Peter a question, he’ll repeat their words back to give an affirmative answer; if he doesn’t like the proposition, he will firmly say “no.”

So: Peter likes his house, he tells us. He loves his family, and the Golden Boy, and setting up his home’s Christmas tree. He likes his room, where he has photos of his parents on the wall and a TV on the dresser. And he is very excited to go see The Price is Right’s live stage show, which will be coming to Club Regent Casino in September.

What Peter doesn’t like is to stay in the same spot for too long. He gets bored. So sometimes, like today, he takes his tablet and goes to sit outside, where he can enjoy the sun and fresh air, and some quiet time watching his favourite show all alone.

For most of Peter’s life, that wasn’t a choice he could make easily. The fact that he can now is part of a slow transformation, not of who Peter is, but of how the rest of society understands how to support people like him. It’s a change driven by years of advocacy from people with disabilities, their families and allies, and it can be found in choices big and small.

And on June 1, when St. Amant officially announced the end of its designation as a developmental centre, it marked a new local milestone in that journey. It means that one of the last such large-scale institutional living facilities in Canada will no longer take people for forever stays, segregated from the broader community, but only for shorter-term stints.

It means that the last 60 people living long-term at St. Amant will soon move into a life that’s a lot more like Peter’s.

That’s a goal that the facility has been working towards for years, but the pandemic shone a glaring light on how critical the change is. While everyone in Canada dealt with some public health restrictions, those imposed on congregate facilities such as St. Amant were “intense,” says Sarah Mankelow, St. Amant’s director of health and transition services.

“This population already has a lack of unpaid friendship in their lives, and this just compounded that,” Mankelow says. “For two years, for the most part, the people supported here only saw staff. They saw their families when they could. We did a lot of virtual visits, a lot of visits through windows. For some, that worked OK. For others, it actually made things worse.”

But at community homes such as Peter’s, there has been more flexibility through COVID-19. At least, residents there could more easily go for walks or chat with their neighbours. But that just highlights one of the core problems with an institution, as opposed to a home: it is set apart from the community around it, which makes it difficult to belong.

Take the St. Amant campus, for instance. It was built in 1931 as a tuberculosis sanatorium, run by the Grey Nuns: from the beginning, it was designed to be a place to hold people away from the rest of the population. The campus is broad, and parts of it are beautiful, dotted with old trees and green lawns. But it is also physically separated from its community by a long driveway, and a large parking lot.

For decades, segregating people with developmental disabilities in large institutions like these was common practice. But it came at a cost. It meant, among other things, that even something as simple as the ability to make spontaneous connections with others in the community was lost. Neighbours make friends with each other, after all, but in order to do that they have to be able to see each other.

“We’re part of this neighbourhood, but are the houses around us truly these people’s neighbours?” Mankelow says, as she walks through the large common spaces at St. Amant, which have become quieter since the pandemic. “I would say no. Like you would see ‘oh, it’s Linda across the street,’ and give them a wave. The people here don’t have that connection.

“So for this group of folk, what is their community? Is it within this building, and the friends they’ve made here, because they don’t have anyone else to make friends with? Is it the neighbourhood surrounding this area? Or is it where they’re eventually going to live? Who do I want to make friends with? Who do I want to live with? That choice isn’t available here.”

“We’re part of this neighbourhood, but are the houses around us truly these people’s neighbours?” – Sarah Mankelow

To understand what those choices can mean for former residents and their families, one can look at Peter’s journey. From the time he was young, his father says, he needed a lot of support; he was just five years old when he moved into St. Amant, which was then one of the only options for kids with disabilities whose families were not able to care for them at home.

For more than 40 years, he had a room there, in the clinical hallways that transect the sprawling brick building on River Road in St. Vital.

To Peter, that was home. He liked his longtime nurse there, Sister Rita Desrosiers, and the activities they did together. But his choices were more limited than they are now. He couldn’t spontaneously decide to walk to the park on a nice afternoon. Couldn’t set his own schedule. Couldn’t choose to get up and spend quiet time outside, alone.

And he couldn’t always choose around whom he spent time, which was sometimes difficult for him. Peter doesn’t like loud noises, but in the busy congregate spaces of St. Amant, he couldn’t easily avoid them. The noise from other residents, his father says, sometimes stressed Peter out: if he heard someone screaming, for instance, he would scream too.

But since moving into the spacious home on the quiet suburban street, Peter, now 52, has thrived. Jovanie says he’s grown more confident, and feels as if he belongs to the community; his parents have also seen changes in their son. For instance, Peter speaks more now than when he was living at St. Amant, his father says. He’s more openly affectionate, and visits are easier to arrange than they once were.

“You can’t even imagine. Now that Peter is happy, I can’t even express myself. We are like free.” – Peter’s dad

Peter is doing “just amazing” now, his father says. For his parents, who are in their 80s, seeing that brings a lot of peace.

“Now, he can say ‘I like my dad, I like my mom,’ and repeat what you’re saying,” his father says. “A few years back, he always accepted what I’m saying. For example, if I’d say ‘Peter do you like me,’ he stayed quiet, he didn’t say anything. Then suddenly, now he says ‘I like that.’ He never did that before… Peter is always happy.

“You can’t even imagine,” he adds, of his relief. “Now that Peter is happy, I can’t even express myself. We are like free.”

Those observations march in step with new research on how people leaving St. Amant fare in their new homes.

For years, researchers had relatively little data on the impacts of such transitions. So in 2016, Shahin Shooshtari, a professor of Community Health Sciences at the University of Manitoba’s Max Rady College of Medicine, launched a study that would track many key health and quality-of-life indicators as people left St. Amant and entered supported community living.

That work began with a lot of questions.

“As these individuals live in the community, what is their experience?” – Shahin Shooshtari

“As these individuals live in the community, what is their experience?” Shooshtari muses. “Do they have opportunities for personal development? Do they feel that they are socially included? Do they have access to a primary care provider? It asks lots of questions, and it helps us to understand more about the lives and the quality of life of these individuals.

“That’s the kind of data that never existed.”

What Shooshtari’s team has found, so far, is heartening. When they evaluated the well-being of 52 people living at St. Amant in eight different areas, from physical health to social inclusion, the group’s overall scores were average for its demographic; areas around social opportunities and personal autonomy tended to be the lowest.

But when researchers evaluated 33 of those people again, at least six months after they’d transitioned into the community, those scores had shot up. Their overall health and mental well-being had significantly improved, as had their relationships with others. They were more socially included.

Health indicators too were widely improved. People seemed to be eating better after moving into community living; they had less chronic constipation, and joint pain improved. Researchers even saw improvements in the rate of epileptic seizures, though the “why” of that is not yet clear.

Some areas did not show the same positive changes: sleep disturbances actually increased in the post-transition group. But that is also useful information, since it puts a spotlight on transition impacts that could be better understood and managed. And overall, both quantitative and qualitative data showed people thrived better, in their houses.

“We are very excited, because it gives us a broad picture about this population.” – Shahin Shooshtari

In interviews with Shooshtari’s team, families said that since moving into their new homes, their loved ones had more choices, more chances to pursue their interests, and more freedom to decide what they wished their lives to be. They also reported seeing health improvements in their loved ones, which in some cases resulted in decreased need for medications.

This combination of health and quality-of-life data for people transitioning out of a complex-care facility is “very unique,” Shooshtari says, and even moreso because people with developmental disabilities in supported care settings are often excluded from other health surveys, such as national surveys done by Statistics Canada or other authorities.

“We are very excited, because it gives us a broad picture about this population,” Shooshtari says. “We have created a very rich dataset, and there is lots that can be done with the data to better understand these individuals and the life that they’re experiencing as they continue to live in the community, and as they age.”

For instance, Shooshtari points out, relatively little is known about dementia or age-related hearing loss in people with neurodevelopmental disabilities. With continued funding, the work they have started could grow into a more comprehensive long-term body of data that could help ensure better supports for those who need them, as their lives unfold.

“This research is about people,” Shooshtari says. “It is about a vulnerable group of people, many of whom are not able to verbally speak on their behalf. Many of them don’t have family members who are involved. So it’s important to be able to actually examine and monitor the health and quality of life of these individuals on an ongoing basis.”

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On the day St. Amant announced it was no longer a developmental centre, Jessica Kowalson was at the press conference, ready for her close-up. At 28, she is outgoing and confident, and comfortable on screen: she’d been interviewed before, as part of Variety fundraising telethons. Once, as a costume, she’d even dressed up as a local TV news reporter.

So at the press conference on June 1, she shared her experience with reporters, of what it was like to move into community living. The next morning she found herself on the set of CTV Morning Live, beside then-St. Amant CEO John Leggat. It felt important to be there, and offer her voice as someone who has lived through the transition.

“Tell my side of it, you know what I mean?” she says. “I just like to educate people.”

Kowalson has a nuanced view of both her eight years at St. Amant and her six years in her own home. She was born with cerebral palsy and uses a wheelchair. When she was about 14, she moved from her family home to St. Amant; it was very much her decision. Her parents “weren’t sold on the idea,” she says with a grin, but she convinced them.

She liked living at the facility: “it was cool,” she says. She made friends easily. She liked its school and her teachers. But one day, in her early 20s, she was invited to a birthday party at a house, where one of her friends from St. Amant had moved to; right away, she was enchanted by the home environment, and how cosy and quiet it felt.

“The next day, I went to my social worker, and said ‘can we do this?’” she says. “And she was like, ‘yeah.’”

From that moment, Kowalson was confident she was making the right move. She’d seen the level of staff support in a home and knew it would be enough. (She does worry about how some of her friends still living at St. Amant, who need more support than she does, will fare in a home setting.) She looked forward to the increased independence she would have.

But there was also a bit of foresight animating her decision. By 2016, she knew St. Amant’s time as a long-term facility was coming to a close: “I knew it was going to happen eventually, whether I like it or not,” she says. Embracing the change on her own schedule, and her own terms, was a way to exert her autonomy in that changing world.

“You took power over your own story,” a St. Amant staff member tells her and Kowalson agrees.

The transition process took about a year. That’s typical, Mankelow says: there aren’t a lot of houses out there, fully staffed and sitting empty, just waiting for people. The houses have to be custom-built to meet residents’ needs, outfitted with wide hallways and all the medical equipment needed for bathing, moving, sleeping and living.

Above all, they have to be intentional about the process. Like Peter, many people transitioning from St. Amant went to the facility as children and are now in their 50s 0r 60s. The change from a more structured institutional setting to the relaxed environs of a home can be disorienting for those who have known nothing else. Preparation is key.

“We involve the people themselves, if they want to be involved, and their support network,” Mankelow says. “It’s not ‘this is Johnny and his list of medical issues.’ It’s ‘this is Johnny and his likes and dislikes.’ It’s a full layout and discussion of every aspect of Johnny. It’s talking about how can we make sure Johnny is successful in the community.

“We involve the people themselves, if they want to be involved, and their support network.” – Sarah Mankelow

“So we talk about, who should he live with? Who does he want to live with? What part of the city? Does Johnny want to be part of interviewing the staff that are going to look after him in the community? And of course we talk about medical needs and training the staff who are going to look after him.”

For Kowalson, the transition was relatively smooth: “The first days were like, ‘this is real. I actually need to unpack. It’s my house,’” she recalls. “It felt really cool.” She decorated her room in her favourite colours — pink and purple — and souvenirs from her favourite TV shows. Before long, she’d settled right in, thrilled to experience having more choices of her own.

One example of that freedom: during the pandemic, Kowalson started her own business making dog cookies. She named it Princess, Dexter, Maverick Cookie Co., after her family pets; she started an Instagram page. It would’ve been hard to do at St. Amant, she says. Maybe not impossible, but getting kitchen time and staff support would have been a challenge.

Soon, the era of institutionalization for people with disabilities will come to a close in Manitoba. St. Amant will now operate only for short-term stays, such as stabilization and end-of-life care. The Manitoba Development Centre in Portage la Prairie will transition its last 130 residents into community homes within the next three years.

But while these are steps towards a more just world for people with developmental disabilities, they are not the end of the journey. Advocates point out group homes are not immune to the problems faced by institutions, such as risk of abuse or restrictions on people’s autonomy; there are many visions for how those models could continue to evolve.

”There’s still work to do at the ground level, in terms of society welcoming people into their neighbourhoods.” – Sarah Mankelow

Above all, society still has a long road ahead, to undo decades of policies that excluded people with disabilities from full and equal participation in their communities. It isn’t enough simply for people to simply live in a neighbourhood; they must also be truly included in it, with opportunities to make organic friendships outside their home’s walls.

“How do we increase unpaid connections in people’s lives?” Mankelow says. “Where are the block parties? What if we held the block party? How do you meet people in the community and make friends and form lasting relationships, so when your support worker finds another job, or your mom passes away, you still have people in your life?”

“When developmental centres were the accepted mode of practice, it was seeing it as people with developmental disabilities aren’t able to live in society, they won’t be able to contribute. Now we’re better than that. But there’s still work to do at the ground level, in terms of society welcoming people into their neighbourhoods.”

melissa.martin@freepress.mb.ca