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July-August 2018

Inside the battle to modernize 1960s-era mental health housing in Ontario

They're home to Canada's most vulnerable. They want change, but many decision makers are fighting it

Megan Marrelli

Illustration by Erin McCluskey

On a rainy Thursday in April, I arrive at a yellow brick, split-level house in London, Ont. People are doing word searches at a large dining table. Some help themselves to a container of freshly baked peanut butter cookies, and CBC News is playing on a television in the living room. This house, tucked away in a quiet, tree-lined neighbourhood a few kilometres from London’s gritty city centre, feels almost like a family home. “You’ve come right in time for morning break,” says Sarah Dutsch, the homeowner, as I take off my shoes. This is one of Ontario’s Homes for Special Care: a controversial custodial housing program for people living with severe psychiatric challenges. Sarah and dozens of other Homes for Special Care operators are now in talks with the Ministry of Health and Long-Term Care about the future of mental health housing in Ontario.

At first I am surprised by the peaceful, if static energy at Sarah’s place this morning. In the weeks leading up to the visit, mental health experts expressed to me major concerns about Homes for Special Care. They are government-funded, for-profit operations, born in the 1960s as a place to live for those discharged from psychiatric hospitals. Today, they are criticized for offering outdated and misguided support to vulnerable people. Sarah and her staff spend 24 hours a day, seven days a week caring for eight tenants living with mental illnesses, including schizophrenia, obsessive-compulsive disorder, and bipolar disorder.

She bought the Home for Special Care and renamed it the Dutsch Residence six and a half years ago, leaving behind a travel and tourism career in British Columbia because she wanted to do something “more meaningful” with her life.

In her kitchen she points to a row of colour-coded cups, one for each tenant, on a windowsill. There is also a code of ethics on the fridge, sign-up sheets for activities, and a list of tenants’ initials on the wall so Sarah can keep track of who is around for mealtimes. Residents can take out money from their monthly allowance from the Ministry of Health and LongTerm Care three days a week; Sarah goes to the bank to do the withdrawals. With the help of staff members, she cooks three meals a day (plus snacks), cleans, does laundry, shops, and supplies personal items like soap, shampoo, and diapers.

Outsiders may criticize the Homes for Special Care program, but it doesn’t change Sarah’s perspective on them. “We can’t lose the reason why these homes exist in the first place: to provide a safe, directed program, based on the needs of the tenant,” she says. “Sometimes the supports need to be pretty active, and that’s okay.”

Research, however, shows that the unconditional and mandatory support in place in Homes for Special Care operations could be hindering some residents from building the skills they need to reintegrate into the world around them. The program “meets almost no best practice criteria, and this has been known for 35 years, at least,” says John Trainor, former director of the Community Support and Research Unit at the Centre for Addiction and Mental Health (CAMH). At one time Trainor was in charge of inspecting some Homes for Special Care operations in Toronto, and for decades he tried to close the program down. “It’s a scandal, really,” he says. “It shouldn’t be there. It’s worse than many models in countries with fewer resources.” In the 1990s, Trainor says he was pulled into a meeting with senior Ministry of Health and Long-Term Care officials who told him that the program was, in fact, slated for closure. But those plans never went through. “We never got called back to another meeting,” he says.

Founded at the start of de-institutionalization, in 1964, and despite the Ministry’s apparent efforts to shut the program down, Homes for Special Care endures. Now, the program that houses some of the province’s most mentally ill citizens is slated for modernization, to be completed by 2020. Homes for Special Care operators and the Ministry of Health and Long-Term Care agree that the program needs to change, but the two sides are at odds about what, exactly, to improve. Talks are stop-and-go. Outside experts, including Trainor, question if the 50-year-old custodial housing program should exist at all.

***

Canadian universal health care has become synonymous with long wait times—and mental health care is no different. For those with debilitating mental health issues, waiting to receive treatment from a psychiatrist can be excruciating. The average time Canadians have to wait to receive psychiatric treatment after being referred by a general practitioner is 19.4 weeks, according to a 2017 provincial survey by the Fraser Institute. In provinces with fewer psychiatric professionals per capita, and rural areas where mental health services are limited, such as Newfoundland and Labrador, patients are added to long waitlists where they may suffer for years untreated.

Here is a breakdown of average wait times in weeks:

B.C.: 17.9
Alberta: 21.4
Saskatchewan: 19.2
Manitoba: 16.1
Ontario: 19.4
Quebec: 14.4
New Brunswick: 37.5
Nova Scotia: 30.4
P.E.I: 33.0
Newfoundland and
Labrador: 93.5

In Sarah’s dining room she begins to introduce me to some of her tenants—eight people who are part of a group of hundreds in Ontario whose lives and homes are at the centre of this debate. A woman named Carol (whose name has been changed to protect her identity) with grey hair and a stable, intense gaze appears from the kitchen. As I turn around to greet her, she immediately asks to speak with me in private. Sarah grows tense as Carol leads me into the living room.

We sit side-by-side on a couch. Carol wears a pink, flowery shirt and though she has asked to talk in private, she speaks loudly enough that Sarah can hear her from the adjoining dining room. “I don’t like the atmosphere here, it has a very negative impact on me,” says Carol. Years ago, Carol lived in a supportive housing apartment for individuals with disabilities with her boyfriend, James. After more than one fire started in the apartment and bed bugs were found, Carol and James were evicted, and Carol found herself living in Sarah’s residence. Her niece now picks her up and drives her for weekly visits to see James who, following the eviction, was placed in a tightly controlled long-term care home. “It was hard for me to adjust, because of not having the nurturing relationship [with him],” says Carol. She says she wants to live independently again, to be with James; she feels restless and isolated. I ask what she likes to do for fun. “I go to the variety store quite a lot,” she says. Sometimes, she stays in her bedroom. “I have my TV in there and I like the solitude.”

As Carol and I talk I can feel Sarah’s presence in the next room. She sighs audibly and then appears in the doorway: “Should we set a time limit on this?” This was not how she expected the visit to start, she admits. Later, she tells me Carol has “stuff on the go” almost every day—community programs three days a week and visits with her niece and James on Tuesdays. Still, Carol maintains that she wants more. “I call Carol my Eeyore, lovingly, because everything is always dark even though she has the most supports,” says Sarah.

In a series of meetings conducted by the Ministry of Health and Long-Term Care for the modernization of the Homes for Special Care program, many residents echo Carol’s sentiment: They want more independence. The Ministry did not agree to multiple requests for interviews, and they would not provide me with the raw data from the survey they conducted, or the interview notes.

But other research shows similar findings. In a 2017 meta analysis of housing choice for people with mental disorders, published in the journal Administration and Policy in Mental Health and Mental Health Services Research, researchers’ pooled analysis showed that 84 percent of study subjects preferred to live in their own apartment, with family, or with people with whom they’ve had a choice in selecting.

However, Homes for Special Care operators argue that some tenants would struggle to live without the constant and custodial support that they provide. “I invite [critics] to come for a weekend. Because this type of program, as much as they disagree with it, it works,” says Lisa Zavitz, an energetic, self-effacing woman who runs another eight-bedroom home down the street from Sarah. For some, she says, “if someone is not there cooking them a meal, they don’t eat. If I don’t remind them to put on deodorant and change their underwear, some of them won’t. This is the reason we’re here.” Jim Akey, who owns one home in St. Marys, Ont., and another in St. Thomas, Ont., had similar concerns about independent living: “Some people might function fine with it, but I think they would be the exception, rather than the rule.”

When I posed this idea to Geoffrey Nelson, a psychology professor at Wilfrid Laurier University whose research focuses on community mental health programs, including Homes for Special Care, he disagreed. “That’s the kind of mindset that makes people stay where they’re at,” he says. “Some operators don’t believe that people have the potential for recovery, but we know from research that a substantial number of people with mental illness do get better.” Nelson conducted a study of mental health housing in London, Ont., in 2003 for the Canadian Journal of Community Mental Health. The study found that while 79.3 percent of subjects said they preferred independent living, 76 percent were not living in independent housing. Also, with the exception of only two people in the study, subjects who said they preferred to live in Homes for Special Care were already living in one. “When you start saying people can’t survive outside these walls, you might get a self-fulfilling prophecy,” Nelson says.

John Sylvestre, vice-dean of research at the University of Ottawa’s Faculty of Social Sciences, is the co-editor of a textbook on mental health housing. When I called him at his office on campus, he agreed. “If people want to try, let them try. Who am I to say that a fellow citizen has gone far enough?”

At the Dutsch Residence, Sarah and Carol lead me to the basement to see Carol’s bedroom. Full of books, photographs, and art, Carol’s room is small and lived in, and she appears proud of it. She is one tenant in the house with her own bedroom. In two other bedrooms, Sarah has created privacy barriers using various objects. For one tenant, a sizeable sheet of plywood from Home Depot and a dark wood dresser that’s taller than his bed separates him from his two roommates. “In a perfect world would he benefit from a single room? Probably,” Sarah says. In another room, she’s separated two beds using a room divider from Jysk, an affordable furniture store.

“We still see that people are sharing rooms with unrelated adults,” says Sylvestre. “They don’t get to choose who [their roommates] are. That’s not accepted in any other part of the specialized housing system. We’re in 2018 and to still see a form of housing that isn’t in its basic form or shape changed since the [1970s], I find it disappointing.” Some homeowners, including Sarah, say some tenants like sharing rooms. Plus, at the current level of funding, she says the only way she can operate this business is by housing eight tenants in a four-bedroom house. Long-term care homes in Ontario, and prisons and hospitals across Canada all get more per diem funding than Homes for Special Care. To keep a resident in hospital costs the province between $700 to $1,400 per day, according to the 2018-19 Ontario hospitals’ interprovincial per diem rates for inpatient services. In Homes for Special Care, a resident costs the province $51 per day.

In Sarah’s kitchen, jazz plays on the radio as Sarah puts together chicken salad sandwiches with the help of one of her tenants. “At first I was worried about you talking to Carol,” she confesses. “But really, she’s the perfect one for you to talk to. She indicates what the struggle is. Somewhere in her mind, she wants more independence, but in the day-to-day realities of how her life trajectory has gone…”

She trails off, but doesn’t need to finish. The mental illnesses that tenants in Homes for Special Care deal with are not minor by any measure. Operators regularly struggle with where to draw the line when it comes to providing support for their tenants—when to let them live their own lives and make their own choices, and when to intervene because those choices are against the best interests and sometimes safety of the tenant.

Every month, tenants get about $140 from the Ministry of Health and Long-Term Care for personal spending. According to homeowners, many spend the allowance immediately. “It’s gone within 24 hours,” says Lisa Zavitz. Often, she says, she finds tenants lying on the sidewalk near their home, having defecated in the street after trips to Valu-mart on payday. “They eat so much their bodies can’t break it down.” Increased appetite is a common side effect of medication for schizophrenia, and “the medication pushes their addiction button.” She says one of her tenants drinks oil. “Within human rights, I can’t physically stop them from that, so I clean up the messes, I make sure they get bathed, I make sure the whole place has been bleached, and then I sit down and have the same conversation with them: ‘I’m here if you need help budgeting money. You can’t do this, this is bad for your system.’”

The Ministry of Health and Long-Term Care plans to increase tenants’ spending allowance to $500 per month, a move that every operator I spoke with opposes. Sarah put her stance on it simply: “Sometimes, them not having money can be one of their only controls.”

***

The homeowners and operators I spoke with are open, even enthusiastic, about giving more individualized care and independence to tenants, but they say they need more funding to do so safely and effectively. Many of the homes are now closing down—smaller ones have become too expensive to run, owners say.

“We’re not like small businesses, we can’t just increase our costs,” says Connie Evans, an owner and president of the Ontario Homes for Special Needs Association. “Empower the homeowner” is a maxim used by several Homes for Special Care operators who say they need more money from the province to survive. “The small homeowners have been struggling, they are not making any money,” says Rahim Charania, another operator.

Policy experts argue that the for-profit model of Homes for Special Care is one of its most fundamental flaws. “It provides an incentive for people making money to keep a stable pool in their house and to have attitudes to say that they can’t do any better,” says Nelson.

Sarah’s Home for Special Care is perhaps one of the best in the business, and not all homes are run like hers. “The one-on-one care, the home-like setting, making sure that they matter and are part of the family. We’re a family, and we’ll argue and bicker and everyone is entitled to that,” says Lisa, who guesses that 50 percent of homes could use significant improvements.

***

On a warm day in May I pull up to a building tucked away on a side street in downtown Toronto. This residence, which opened in 1994, is inconspicuously large with high ceilings and 20 private bedrooms each equipped with an ensuite four-piece bathroom. “This is the Cadillac of mental health housing,” says Janet Huang, the executive director of the non-profit housing program Pilot Place Society, who welcomes me at the door.

With just slightly more staffing than Homes for Special Care, this non-profit is known as one of the best ways to house people with mental illness. “Homes for Special Care went out of fashion, although they were the answer to a lot of things,” Janet says.

The program should not be abolished entirely, Janet says. “There are people who could do well there,” though, she says, it certainly shouldn’t be the only option.

At Pilot Place Society’s three Ontario residences, the philosophy is recovery. “We are re-training people for community living,” Janet explains. They’re taught the basics, like how to bathe and pick out an outfit. Some tenants are employed by alternative businesses as mail couriers and others as helpers in a cafe in the city. There is a Tenant Council run and led by the residents.

Even in this type of housing, where increased independence is an explicit, mandated goal, getting people to recover is difficult. Janet and her staff took at least a year to successfully train residents to go to the corner store next door unsupervised. One Pilot Place Society resident named Ivan showed up in 2009 from CAMH’s inpatient unit, where he says employees told him he could not cross the street because he’d previously been hit by a car. At Pilot Place Society, Janet pairs Ivan up with other residents to go on walks around the neighbourhood. “Here, we’re part of a society,” Ivan says, adding that he’s much happier than his days in the hospital. “I have freedom here.”

Perhaps Carol, the woman in Sarah’s house with the stable, intense gaze, would fare better living somewhere like Pilot Place Society. Or perhaps Sarah and the Homes for Special Care program are offering Carol just what she needs for her specific challenges and abilities.

Carol’s niece, one of her only surviving family members, is happy with the care her aunt gets at the Dutsch Residence. “Sarah has a routine, a grasp on these guys. Carol doesn’t seem happy there, but it’s a wonderful place,” she says. Is the embattled custodial housing program fundamentally and philosophically flawed, or is it in need of a serious fix? Sarah doesn’t know what, exactly, the Ministry’s modernization and the plans to change the program will ultimately mean for tenants.

“We’re all kind of scratching our heads going, are they losing something, or are they gaining something? I’m just anxious about caring for these people.”

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