Steven Walker first experienced psychosis while composing a song called “Flux.”
Just over a decade ago, the lifelong Barrie resident was hanging around the rooming house where he lived with his mother. His best friend was over, and, “feeling uninspired,” the two hopped onto Walker’s on his laptop to use his new music software.
“I said to him, ‘Listen, man. Pick a few notes — let’s make something random,’” Walker says.
His friend threw down a few notes in Walker’s digital audio workstation, and Walker began to build the track.
“As the build sequence progressed, something very peculiar started to happen,” he says. “It would go faster and faster, climb and climb, and then, as the bass dropped, time slowed down. It just got worse and worse to the point where it was scary.”
Walker describes the song and its pulsating momentum as the “focal point” of his psychosis.
“Eventually,” he says, “it went off like a bomb in my mind.”
In short order, Walker was hospitalized and diagnosed with schizophrenia. This marked the beginning of a six-year journey to find the right combination of medications to treat his psychosis.
It was during this time — what he describes as some of the “most difficult years” of his life — that Walker was taken under the wing of his local Assertive Community Treatment team.
ACT is a model of care for people living with severe and persistent mental illness. First developed in the late 1960s in Madison, Wisconsin, it pairs patients with a multidisciplinary team of professionals to provide wraparound care within their community.
Walker’s ACT team in Barrie is composed of a psychiatrist, addictions counsellors, nurses, and recreational and vocational therapists.
“They all supported me depending on what I was going through at any given time,” Walker says.
Today, ACT is considered the gold standard of care for people with severe mental illnesses, who make up a disproportionate number of Ontario’s unhoused and incarcerated populations. Those who do not meet the high standard for ACT care are often assigned to Flexible Assertive Community Treatment teams, which provide many of the same resources on a case-by-case basis.
According to the Ministry of Health, there are 95 ACT and FACT teams in Ontario. Most of them are funded through hospitals, although some are supported through community agencies and grants.
Despite the model’s evident success in treating Ontario’s most vulnerable patients, however, experts say the province needs roughly twice as many teams to effectively serve the population. In the meantime, hundreds of Ontarians sit on wait-lists for a treatment model that patients like Walker have described as “life-changing.”
Funding, oversight remain challenges
“Most of the work we do is out in the streets,” says John Maher, the president of the Ontario Association for ACT and FACT and a consulting psychiatrist on an ACT team in Barrie. “My daily work is in bug-infested rooming houses, shelters. We go around to see people.”
Maher says the province should prioritize the funding of new ACT teams — and properly resource the teams that already exist.
“With schizophrenia, schizoaffective disorder, time matters,” he says. “These things go downhill unless you stop the progression early.”
A 2016 study by the Royal Ottawa Hospital found that nearly 500 people in the province were waiting to be connected to an ACT team. That number is likely higher today. Maher says more recent epidemiological data shows at least 5,500 people in Ontario meet the threshold for ACT-level care.
John Maher is the president of the Ontario Association for ACT and FACT. (Courtesy of John Maher)
“These are people with degenerative diseases waiting up to five years in some areas,” Maher says, adding that ACT and FACT treatments are necessary to relieve pressure on other parts of the health-care system.
In 2014, the province funded 200 new spaces for ACT treatment in (what was then called) the Central East Local Integrated Health Network, covering Whitby, Port Hope, Peterborough, and parts of Scarborough, an area served by eight ACT teams.
Over the next three years, the first 204 clients admitted for ACT treatment saw a 90 per cent reduction in hospital-bed days — for a total saving of more than 32,000 bed days. A previous analysis done by the OAAF found that a single ACT team saves hospitals $4.5 million in costs simply through bed-day reduction.
But such ambitious investments in ACT have been few and far between over the past decade. Meanwhile, the province’s existing ACT and FACT teams have struggled to stay adequately resourced — often merging into other services or offloading responsibilities such as vocational support to other organizations in the community.
In the absence of provincial oversight, the OAAF has stepped in to conduct reviews of Ontario’s ACT teams to ensure their adherence to the model’s strict standards. These reviews were conducted by the Ministry of Health until 2007, when the responsibility was offloaded to the province’s new local integrated health networks.
Unlike the province’s mandatory reviews, however, the OAAF’s are voluntary, and only about a quarter of the province’s ACT teams have participated.
This lack of oversight, coupled with high turnover in the field, a dearth of stable funding, and high demand for treatment, have chipped away at the effectiveness of Ontario’s existing ACT teams. A study published earlier this year found that these teams have seen a steady decline in their ability to meet the model’s standards.
“I can find no explanation for this underfunding other than systemic stigmatization,” Maher says.
The pandemic effect
The most recent challenge for Ontario’s ACT teams came as a result of the COVID-19 pandemic.
Jessica had been depending on the support of her ACT team for more than a decade. (TVO Today agreed to withhold her name to protect her anonymity.)
Like Walker, Jessica was diagnosed with schizophrenia in her late teens.
“Before I was with ACT, I was constantly in and out of the hospital because they couldn’t figure out what was wrong,” she says. “I was scared, too, because I didn’t know what was going on. I was hearing voices telling me to hurt people and kill myself, stuff like that.”
After a brief stint in hospital, Jessica was prescribed the right medication and began to receive disability benefits.
“As soon as I got things in place, things started to get better,” she says.
Her ACT team helped her manage her disability by providing support such as grocery runs, medication reviews, and face-to-face meetings once or twice a week.
But, she says, “everything changed when COVID happened. We used to do a lot of activities: we used to go in the community and walk the malls or go on trips. That stopped until earlier this year.”
The pandemic and the resulting isolation, uncertainty, and loss of support found her back in the hospital in the mental-health ward.
“It was just not a good experience.”
Samuel Law, a psychiatrist who works as a clinician on two ACT teams in Toronto, remembers the onset of the pandemic as a period of rapid adaptation.
“There was definitely a reduction of in-person visits,” he says. “How much of that was replaced by phone calls, FaceTime, or Zoom? Definitely not 100 per cent.”
The closure of libraries, family-health-team sites, and drop-in centres also posed challenges for clients who did not have a fixed address or a phone they could use to communicate with their teams.
“At the height of that, there was a kind of adaptation going on, but it was wanting in many senses,” Law says.
To close the gap in services, Law says, his team leaned on the support of allied professionals, such as pharmacies that would deliver medications, and clients’ families and friends, who became “more involved with monitoring and collaborating on their health.”
However, the pandemic still had an outsize effect on his patients. A study he published last year on the impact of pandemic lockdowns on people living with serious mental illness found a litany of consequences: social isolation, life disruption, increased hospital and ER use, and a rise in substance use and related deaths.
Looking ahead
Coming out of the pandemic, people living with serious mental illnesses in Ontario still face a difficult road.
“The current housing and opioid crises have hit our clients particularly hard,” Law says. “They’re already vulnerable, marginalized, and struggling to survive. It tends to get blurred in with the pandemic, but make no mistake, this is a whole other clear and ongoing problem.”
Maher maintains that expanding access to ACT and FACT treatments for this at-risk population should be a priority for the provincial government. But, he notes, it has been two years since the last new ACT team was formed in the province, and that came through amalgamating existing services.
“I have gotten more direct about saying how frankly disgusted I am with the system,” he says.
In response to questions about plans to add new ACT teams and fund existing ones, Ontario’s Ministry of Health responded by saying that “work is underway to understand the demand for these services moving forward and will determine the locations and future planning decisions.”
These decisions cannot come soon enough for clients like Jessica and Steven Walker, both of whom credit their current well-being to the timely interventions of their respective ACT teams.
Walker continues to make music and tries to attend as many of his team’s group activities as possible.
Jessica says she is doing well, too: “Yes, some things have fallen through the cracks. But my team has always been really good to me.”
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