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Through The Cracks: How Can Mental Health Care Bridge The Language Divide?

How Can Mental Health Care Bridge The Language Divide?
Illustration by Chloe Cushman for HuffPost Canada

Soon after my boyfriend and I moved into our apartment in the spring of 2013, we started to hear her scream.

It would start as chatter; she would talk very quickly in a Chinese dialect. Then it would get louder and she'd start to yell and bang on the second-floor wall we shared. She'd pace back and forth, walk up and down the stairs. The noise would sometimes last a couple of hours before dying down.

Our apartment is on the top level of a semi-detached house that looks like all the others in our east-end Toronto neighbourhood. Our side of the house is painted a light grey, but her side of the house is faded and chipped. Curtains and blinds black out all the windows. No one waters the grass. It feels dark over there.

During those first few months, we heard her through the wall we shared but rarely saw her or the family members who lived with her.

Then one morning in November, I went for a long run. It was warm for late fall but windy. I remember I made banana pancakes after I got home. As I cut one up and swirled it in the syrup, I heard a scream on the other side of the wall.

But this voice was different. I heard loud knocking on our front door. A young woman was standing there, her face red and crumpled. Help me, she said.

"I think my boyfriend is dead."

She said she thought he'd died by suicide. I grabbed my phone and brought her in while I called 911, my hands shaking. Police, fire or ambulance, the dispatcher asked. Ambulance, I said.

Then the girl asked if I could come over. My stomach balled up. "Yes, of course." I followed her outside. As she opened her front door, I did something I've never done before: I crossed myself. I'm not Catholic, but grew up Christian, and thought that this was as good a time as any to ask God to help me with whatever I might find inside.

In a basement bedroom, a young man lay curled up on his side on a mattress on the floor. He was wearing black sweatpants and his arms were wrapped around a teddy bear.

I was still on the line with 911, and the dispatcher began walking me through CPR. But I'd been a lifeguard for years, I knew.

I shook his stiff shoulders, leaned in close to his mouth to listen for breathing. His mouth was like a vise, so I couldn't give him any breaths. I had to remove the teddy bear from his clasped arms to get to his chest, but once I pulled it away, his arms didn't move. I managed to squeeze my arms in and start compressions. I could hear the air leave his lips as I pushed down.

After about four or five rounds in, the paramedics arrived. Soon, they told the young woman what we already knew.

I sat with her as she spoke to the stream of police and paramedics. She told them her boyfriend was 23 and he had been experiencing depression. One officer wanted to know whether there was anyone else in the house. There was: his mother, who had barricaded herself upstairs.

A police officer walked up and knocked on the door. The mother, Cindy, yelled in English that she was in the shower, she'd be right out. When the officer asked the young woman what was happening, she shrugged and said Cindy had schizophrenia and wasn't taking her medication.

At one point, I decided the young woman and I should sit outside on my front steps. She told me she'd probably move back in with her parents. Eventually, her sister arrived to pick her up. As she walked away, she met my eyes. Thank you, she mouthed.

Later, I saw Cindy on her front steps, screaming and waving her arms around, surrounded by police. This was the first time I'd seen her up close. She was short, 60ish, her grey hair pulled into a ponytail.

The police took her to the hospital that day, but she was back home a few days later.

In the months that followed, the screaming got worse.

She'd bang on the walls and pace up and down the stairs. I could never understand what she said, but her screams sounded like a woman in pain.

A year and a half later, she still lives alone. I never see anyone visit. Mail gathers on her doorstep; the flyers folded and stuffed into her door handle left there for weeks on end.

I've tried knocking on the door many times. She never answers.

After her son died, we started to call the police when the screaming lasted more than an hour. It always happened the same way. Two uniformed men would knock on our front door and I'd tell them what I knew. They'd say that they knew of her, that they'd been called to her house in the past.

They'd knock on her door, call her by name, say open up. She never would. I'd step inside my own front door to listen for any noise on the other side of the wall. Silence. Then, they'd leave.

After the first few calls, the police started to send the Mobile Crisis Intervention Team β€” a nurse and cop duo who are trained to deal with mental health crises. They would arrive after the first responders, who were a rotating cast of officers I often had to brief. The first time I met the team, the nurse explained that if they could convince Cindy to open the door, they could calm her down and possibly get her treatment.

None of the mobile crisis team members who attended Cindy's house speak Chinese, something I'd later learn could have made a big difference in how she responded.

But as long as she wasn't a threat to herself or others, there was nothing they could do beyond talk to her through the door. Which she has never opened.

There are currently six mobile crisis teams in Toronto, the result of a partnership between police and area hospitals. The teams respond to calls when police officers feel they need backup or think some specialized training could help a situation.

If the officer in the team decides to arrest a person under Ontario's Mental Health Act, both the officer and nurse accompany the person to a hospital where a doctor decides if they will be admitted for treatment.

Other options include referring the individual to community mental health services, or trying to follow up later by phone.

It's a noble concept, and a necessary one. The first team sprung out of a recommendation from a coroner's inquiry into the death of Edmond Yu. He had schizophrenia and was shot by police in 1997 after wielding a hammer on a city bus. After the deaths of Michael Eligon in 2012 and Sammy Yatim in 2013 β€” both were killed by Toronto police officers β€” the teams expanded across the city.

Det. Sgt. Warren Wilson used to oversee the program in the east end of Toronto. He says that, in part thanks to the teams, fewer people in that part of the city have been arrested, and police have better relationships with local hospitals and shelters.

However, the teams still have their limitations.

They only work from 6 a.m. to 11 p.m., so they aren't much help if someone is in crisis in the middle of the night.

In a 2014 evaluation of the program, one police officer expressed frustration that patients often face long waits in the ER. According to protocol, these patients have to wait to be seen by a doctor before they can see a psychiatrist β€” even though they've already been assessed by a psychiatric nurse.

The study's authors noted that there is no official protocol for how the teams should follow up with people afterwards. They also note that there is debate about whether the officers and nurses should start wearing plain clothes and driving unmarked cars.

Bonnie Wong, director of Hong Fook, a mental health organization for the Asian community in Toronto, says the image of a police officer can vary for people from different cultures.

"People can be a person to support you; they can also be a person who actually puts you at risk."

The Ontario Mental Health Act has provisions that can force people to get treatment. Form 1 is an assessment issued by a doctor that can mandate a person's admission to a psychiatric facility. A family member or other concerned person can also ask a justice of the peace for an order to have the person examined.

They have to prove, however, that there is evidence or risk of serious harm to that person or others. Or that the person has a mental illness that, if untreated, will likely result in their mental or physical deterioration or bodily harm.

Wilson says the teams have little recourse if someone refuses to respond and they aren't a danger to themselves or others.

"It's a very frustrating thing for everyone involved," he says.

Josephine Wong, an associate nursing professor at Ryerson University, thinks that the balance between respecting individual rights and getting people help is tricky.

"There are pros and cons, because we had a history of people who are very marginalized and just get thrown into asylums. But then there's a system where some people's hands are tied."

After a few months, it became clear there was nothing the police or nurses could do for Cindy. Our landlord was sympathetic, but he was just as powerless as we were in getting her help.

She stayed in the house, screaming for hours. All alone, except for us on the other side of the wall.

At one point it got so bad that we considered moving out.

Eventually we heard less and less screaming from the other side of the wall, and we decided to stay.

As the weather got warmer last spring, she appeared outside more often. One day as I was pulling milk from the fridge, I saw her outside our back window, watering the plants in her backyard and talking to herself. Sometimes I'd see her on the sidewalk, walking in her worn shoes as she pulled a buggy of groceries. She would never make eye contact, and I could never muster up the courage to try to talk to her. I wasn't sure what I would have said if I did.

I decided to speak to the woman who lives on the other side of Cindy, hoping to find out more about her. A retired nurse, she tells me that Cindy moved in about 14 years ago, although I have no way of verifying that. She doesn't seem very sympathetic, calling Cindy a "troublemaker."

Police have come by at least 20 times over the years, the neighbour says.

"The son, he was a nice guy, a nice kid," she says. "The mother would yell at him all the time for no reason."

In their conversations, he apparently told the neighbour his mother's insults were weighing on him, and that one day it would be "the end." He told her that his mother wasn't taking her medication and that once, Cindy attempted suicide, she says.

Cindy's mother β€” who had a stronger grasp of English than her daughter β€” approached the neighbour years ago for help. But the neighbour told her that she didn't speak Chinese and couldn't do anything. It seems to me that she didn't want to get involved.

"Sometimes in the backyard, she goes and cries," she says.

The neighbour says she has reprimanded Cindy before about making too much noise. She maintains that if Cindy causes enough of a ruckus, one day the police will break down the door.

I'm not so sure.

Illustration by Chloe Cushman for HuffPost Canada

For thousands of Torontonians like Cindy, English isn't their first language, something that can have a big impact on their experiences with police and the health-care system.

A 2004 U.S. study showed that non-native language speakers spend slightly longer in hospital, and previous research has suggested they receive a lower quality of care in the emergency room.

Dr. Kwame McKenzie specializes in the treatment of underserved populations at Toronto's Centre for Addiction and Mental Health. He says language barriers create an almost impossible situation for both the doctor and the patient.

"If you don't know what is going on, you can't understand what people are talking about, they can't understand you, how do you make a diagnosis, and how do you prescribe the right course of treatment?"

Since 2012, hospitals across the Greater Toronto area have paid for a 24-hour phone service that gives them access to interpreters who speak 170 languages.

But only 73 per cent of health-care providers interviewed for a study last year felt that the over-the-phone service was appropriate for patients dealing with mental health crises. Some respondents said that a voice without a physical presence could be hard for a doctor to explain, or a patient to understand. One social worker gave an example of an interpreter who didn't know a patient was having a delusion, and kept asking them to be clearer.

Hospitals have also made a real effort recently to have face-to-face interpreters available, says Axelle Janczur, executive director of Access Alliance, a multicultural health and community service organization that also trains interpreters to work with people with mental health issues.

She says some hospitals employ their own interpreters, while others contract out the service using groups like hers. However, she thinks it's hard for institutions to get a sense of the demand.

Many patients will bring in their family or friends instead, which Janczur says isn't appropriate for a hospital setting where a communication error can mean the difference between life and death.

"Communities that don't speak English aren't aware of their rights to ask for this," she says.

I get the sense that there are many people who have fallen between the cracks.

Bonnie Wong partly blames long wait lists for psychiatric treatment β€” waits that get even longer when a person in need has a language barrier or relatives who don't know how to navigate the system.

"Every single minute counts," Wong says. "If people have to go through four providers in order to get their diagnosis, and wait until two years to get treatment, then the golden time [is] lost."

She thinks there is also a problem with what she calls "continuity of care," or the lack of follow up once someone begins to heal.

"How do you help people to walk through the system? GPs don't do house calls."

Many of Hong Fook's clients have told her they're left out in the cold.

"[They'll say] 'I'm doing better but there's nothing available for me,'" she says. "So we see a lot of our clients are recovering, but we have nowhere to send them."

Wong also points to cultural stigma against mental illness in Asian communities, which can be so strong that people hesitate to seek help or even fill their prescriptions.

This stigma also has a negative effect on family relationships, she says.

"In Chinese culture, we have seen times [when patients] died because of a suicide, and the family will make it as a case of a sudden death because of a sudden illness."

Ryerson's Josephine Wong says that people become the most isolated when their mental illness isn't managed, and family members can't cope.

"We need to support the person, having accessible treatment and services, but the family members also need support, so that we know what can we do, because the law is there to protect people who are diagnosed with mental illness, but sometimes our hands are so tied."

Wong was in her late teens when a family member began to show symptoms of schizophrenia β€” and her family didn't know how to deal with it.

"I remember how scared I was, because we were family. We tried to support [her] but we didn't know what to do," says Wong. "Those feelings are very overwhelming and that's the reason why I'm not shy talking about it because I know all kinds of people are experiencing that."

But while some might point to cultural beliefs as a major stumbling block for families, Wong thinks that seeing stigma as purely a cultural issue is an excuse.

She says it's present in every culture and that workplaces in particular have a big role to play in training staff to support their colleagues. Individuals need to reach out to their neighbours too, she says, if they notice they need help.

"If we re-frame things that way... then people just can't say that well, it's those people if they don't want help, there's nothing we can do."

Bonnie Wong sees many Asian people with mental illness at Hong Fook. The group runs a clinic staffed by psychiatrists who speak Mandarin, Cantonese, Korean, Vietnamese and Khmer (Cambodian). It also offers services like support groups, English as a Second Language lessons, and hot meals.

They have a case management program, which helps people and their families walk through the health-care system.

I explained to Bonnie Wong that Cindy rarely leaves her house. How would she find out about an organization like Hong Fook now, with services so tailored to her needs?

Wong says that they will make home visits if a family member requests one, depending on the safety of the home and the person's comfort level. But the person also has to give consent first.

The Canadian Mental Health Association also runs Assertive Community Treatment (ACT) teams, composed of nurses, peer support workers, psychiatrists and other mental health professionals who work with people who have a hard time accessing other health-care services. The teams are on-call 24 hours a day. Many of the teams are also multilingual, and someone would definitely speak Chinese.

Adam Wiseman, who manages two ACT teams in Toronto, says they will visit people in their homes and coffee shops as well as hospitals, and can help them take medication, apply for jobs, school and housing.

"We aim to serve people who don't respond to traditional, office-based services but can still live in the community with the right amount of support," he says.

His teams' aim is that 80 per cent of people they see won't spend even one night in hospital for a year, a target Wiseman says that they meet.

He also says he thinks hospitals are well-aware of the teams' existence, and can refer someone through an online application process called Access Point.

But all of these options require a family member to intervene on a person's behalf, and then, that person has to agree to treatment under the Health Care Consent Act, unless someone else has been designated their chief decision-maker.

"If a client's refusing to access services, there's nothing much we can do," says Wong.

I wonder if there's a better way to coordinate mental health services than what Toronto is doing. Dr. McKenzie says that no one city handles mental health services for non-English-speaking groups perfectly.

He says several cities have set up case managers to help people from diverse backgrounds connect to all the different health-care programs and services that are available. In the U.K., the National Health Service tries to do this via its community development workers. Australia and New Zealand have a similar approach.

The idea of a case manager is a common way that governments try to deal with the complexity of their health-care systems, but it isn't ideal, he says.

"It doesn't make a whole lot of sense," McKenzie says. "What you should do is make the system simpler."

I have no way of knowing what happened during Cindy's encounters with doctors. I'm fairly sure she's been taken to a hospital, but can't know if she was ever given a formal diagnosis, a referral to an ACT team, or if anyone ever visited or called to follow up. Maybe her family had access to all the available mental health services. But I do know that now she's all alone.

Wong suggested I leave a Hong Fook pamphlet in Cindy's mailbox, or even some small chocolates on her doorstep; any way to try to make contact.

I don't know if she'd see them before the box got soggy.

"I think you have tried the best you can," she says.

The day after Cindy's son died, I scoured the Internet looking for any information about him or his girlfriend. I felt sad that I'd lived beside this man for several months and never knew who he was.

I wanted to get in touch with his girlfriend, but I could never find her. I didn't even know her full name. However, I did find a memorial page with hundreds of photos, dozens of them selfies of him and her.

I could only find Cindy in one faded childhood shot. In it, she and a man sit on either side of a boy on a couch. The boy looks about nine or 10. They're all smiling.

For many months, Cindy was quiet. Sometimes so quiet that I wondered if she died too. But recently, as often as three or four times a week, I can hear her stomp around and scream again.

I try knocking on the door, but she hasn't answered.

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