Saturday, 22 April 2023

A Radical Experiment in Mental Health Care, Tested Over Centuries


A woman in a floral top and a man with white hair feeding a donkey in Geel, Belgium.
Ann Peetermans and Iosif, who lives with her as a boarder, feeding a donkey in the backyard of her home in Geel, Belgium.

In the Belgian town of Geel, families have long taken in people with psychiatric conditions. Could this approach work elsewhere?

Matina Stevis-Gridneff and 

Matina Stevis-Gridneff, Koba Ryckewaert and Ilvy Njiokiktjien reported from Geel in Belgium, where they met foster families, boarders, community representatives and experts.

A painful loop has defined Iosif’s 53 years on earth: trauma, mental breakdown, psychiatric institutionalization.

From his native Romania to a failed asylum bid in Belgium and later divorce and financial distress, Iosif’s condition has punctuated crises in his life that often spiraled out of control.

But as he sat at the dining table overlooking the woods through wide glass doors, he seemed at peace.

He spoke about his daily chores (feeding the donkey, doing the dishes), favorite pastimes (reading the Bible, shopping), worries (forgetting to take his pills, overspending).

In the living room, the sounds of cartoons filled the air. Etty, 71, and Luc Hayen, 75, were transfixed watching a children’s show involving a mouse on an outlandish adventure. The house cat was curled up on a cream sofa.

All of them live with Ann Peetermans, a 47-year-old beautician, and her teenage son in a long-term arrangement where people with mental illnesses move in with local families.

ImageA portrait of Ms. Peetermans; Iosif; Luc Hayen; Ms. Peeterman’s son, Warre; and Etty, in a shadowy room.
From left, Ms. Peetermans; Iosif; Luc Hayen; Ms. Peeterman’s son, Warre; and Etty.
A portrait of Ms. Peetermans; Iosif; Luc Hayen; Ms. Peeterman’s son, Warre; and Etty, in a shadowy room.
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Ms. Peetermans with bread for her donkey, as Etty sits in an adjoining room in the background.
“I think that if I could have four, I would also be up for it, but three is the maximum they place in one family,” said Ms. Peetermans of her boarders. “I just like having a lot of people around me.”
Ms. Peetermans with bread for her donkey, as Etty sits in an adjoining room in the background.

It is an approach to psychiatric care that has gone on in Geel (pronounced “hail”) since as early as the 13th century, archives show. The locals began building a church to St. Dymphna, the patron saint of mental illness, in the mid-1300s and pilgrims flocked to Geel. They lived in the local farmers’ homesteads, where they worked the land alongside their new families.

Both the tradition and the church still stand.

By the end of the 19th century, nearly 2,000 boarders lived among the Geelians, as the locals call themselves. Today the town of 41,000 in Flanders, the Dutch-speaking part of Belgium, has 120 boarders in local homes.

That has made Geel both something of a model for a particular paradigm of psychiatric care and an outlier, often regarded over the centuries with suspicion (including by The New York Times, which, in a headline from March 23, 1891, called Geel “a colony where lunatics live with peasants” that had been “productive of misery and evil results”).

Those suspicions only grew as Geel’s approach crushed up against the rising medical field of psychiatry. In more recent times, however, the town has come up for reconsideration as an emblem of a humane alternative to the neglect or institutionalization of those with mental illness found in other places.

“There has always been controversy about how ‘disturbed’ or ‘eccentric’ people should be treated,” wrote Oliver Sacks, the renowned neurologist, in 2007, in his foreword to the book “Geel Revisited,” an examination of 19 boarders over the course of decades.

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A church with a spire next to a cemetery and tree-lined pathway in Geel.
The Church of St. Dymphna, the patron saint of mental illness, was built beginning in the mid-1300s.
A church with a spire next to a cemetery and tree-lined pathway in Geel.
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Two teenage girls in period costumes with visitors in modern dress at the Gasthuismuseum in Geel.
Teenagers play the roles of St. Dymphna and a “care sister” during a tour at the Gasthuismuseum in Geel.
Two teenage girls in period costumes with visitors in modern dress at the Gasthuismuseum in Geel.

“Should they be treated as ill, possibly dangerous, confined in institutions?” wrote Dr. Sacks, who died in 2015. “Or is there a chance that a more human and social approach, trying to reintegrate them into family and community life, a life of love and work, will succeed as well?”

For Dr. Sacks, who had visited Geel, the answer was to accept mental illness as individuality, rather than a stigmatizing disability.

Geel proves, Dr. Sacks concluded, that “even those who could seem to be incurably afflicted can, potentially, live full, dignified, loved and secure lives.”

When Ms. Peetermans was growing up in Geel her aunt hosted boarders with psychiatric conditions. This was natural for Geelians, she said.

Seven years ago, when she considered joining the centuries-old tradition herself, it wasn’t a question of if she would take boarders into her newly renovated home, but of how many.

“I think that if I could have four, I would also be up for it, but three is the maximum they place in one family,” she said. “I just like having a lot of people around me.”

For Mr. Hayen, this is his third foster home in nearly 30 years, and he says he gets along well with the other boarders, Etty — “a good woman” — and Iosif — “a gentleman.”

“I have a mighty life here,” Mr. Hayen said enthusiastically. “Because I look to freedom, like every person pretty much.”

His next project, he said, was to get a secondhand bicycle to ride to the activities center next to the psychiatric hospital for his weekday pastimes.

The New York Times is identifying and photographing boarders and their foster families according to their wishes, and a psychologist accompanied Times journalists during the reporting.

Image
Mr. Hayen, balding and in glasses, standing in the doorway of a shed near the Peetermans’ home.
Mr. Hayen in a shed near the Peetermans’ home. “I have a mighty life here,” he said.
Mr. Hayen, balding and in glasses, standing in the doorway of a shed near the Peetermans’ home.
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Bundled-up shoppers at an outdoor food stand at the weekly market in a paved open area in Geel.
The weekly market in Geel. For centuries, the town has been a haven for individuals living with mental illness.
Bundled-up shoppers at an outdoor food stand at the weekly market in a paved open area in Geel.

Since the 1860s, Geel has had its own state psychiatric hospital, which is the anchor and safety net for the program.

Wilfried Bogaerts, a leading psychologist there, said that finding patients for the fostering program was not so much about their diagnoses, but rather about how stable their conditions were. Boarders include people who have schizophrenia or other severe psychoses but who have settled into a treatment and can function well in a family.

Potential boarders are matched with families that have been screened and have had their homes approved to take in a boarder.

Diagnoses are never revealed to foster families, unless the boarder chooses to share. Case workers instead focus on preparing families for what kind of behavior to expect, the medication regimen and red flags that should be swiftly reported.

Key to the trust that underpins the arrangement is the 24/7 availability of case workers at the hospital nearby.

“Foster care is psychiatric care, which means that all the team members that you can find in a regular psychiatric hospital are involved in foster care,” Mr. Bogaerts said.

The Belgian state pays foster families a stipend of 23 to 28 euros per boarder per day ($25-$30). By all accounts, the money is not enough.

And the program has been steadily shrinking in recent years. The local community and the hospital are trying to reverse that trend. Belgium recently submitted a bid for Geel’s fostering program to be recognized as “intangible cultural heritage” by UNESCO, the United Nations Educational, Scientific and Cultural Organization. And the program leaders have rolled out an advertising campaign to get more families to consider fostering.

“I think it’s important that, for example, my grandchildren learn to live with people with such conditions,” said Greet Vandeperre, 66, who leads a community group representing foster families, boarders, the hospital, the town and the police.

Image
A view through window at three patrons sitting on a banquette at a pub in Geel.
Patrons in the Irish Pub Geel.
A view through window at three patrons sitting on a banquette at a pub in Geel.
Image
Greet Vandeperre, a woman with short hair and glasses, wearing dark clothing in a portrait against a dark background.
“I think you must have trust, believe that every person has capabilities. To first see the good in people, and to know that what’s wrong is only a little part of the person,” said Greet Vandeperre, chairwoman of the Psychiatric Foster Care Council in Geel.
Greet Vandeperre, a woman with short hair and glasses, wearing dark clothing in a portrait against a dark background.

For many, the boarders become family. Ingrid Daems and Hugo Vanopstal’s young grandchildren know Janina Bak, their grandparents’ boarder of 18 years, only as “Auntie Nina.” They’re not sure how exactly they’re related, but in weekly visits throughout their lives, they have sat on her lap, eaten with her and celebrated with her.

When Ms. Bak became very ill with a liver problem, spending nine weeks in a coma and a total of four months in the hospital, Ms. Daems was there to see her through it and welcome her back home.

“She’s my guardian angel,” she said.

Ms. Vandeperre’s decades-long career in Geel’s police force offers insights into the questions that often arise from the town’s experience: Is the approach safe? And can the Geel paradigm exist only in Geel?

In Geel, officers regularly come across boarders behaving strangely in public or even breaking the law, Ms. Vandeperre said. But because of the town’s culture of fostering, they know how to de-escalate a situation, and to call the psychiatric hospital immediately.

The approach stands out from that in the United States and elsewhere, where calling law enforcement may be the first move when someone is experiencing a mental crisis. In many situations where the police are involved and training is insufficient, the results can be violent and even deadly.

Ellen Baxter, for one, thinks that core elements of Geel’s approach can be replicated and has spent the last 35 years trying to recreate it in New York.

Ms. Baxter, founder and director of Broadway Housing Communities, a New York housing charity, was fresh out of college in 1975 with a psychology major when, eager to learn more about the fostering program, she moved to Geel for a year. She returned to New York City and started fund-raising to create buildings where people with psychiatric disorders could live within communities.

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Two young children and three women  gathered around a dining table with a board game in a white room, as two men rest on deep red couches in the background.
Janina Bak, center, a boarder in the home of Ingrid Daems, right, playing a game with Ms. Daems’s daughter and grandchildren.
Two young children and three women  gathered around a dining table with a board game in a white room, as two men rest on deep red couches in the background.
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A close-up of a detailed adult coloring book being filled in.
Ms. Bak drawing in a coloring book.
A close-up of a detailed adult coloring book being filled in.

The most recent development, in the Sugar Hill neighborhood of Harlem, is the one she thinks most resembles a kind of “vertical Geel.” It is home to families and single adults, some of whom are living with mental illness and many who are not. The complex contains a day-care center and a museum that attract nonresidents. Everyone knows who everyone is.

“You need two elements: good design, and time,” Ms. Baxter said in an interview.

“Life becomes more about the pragmatism of every day: Setbacks happen, people die, babies are born,” she said. “The proximity of experience in one community makes values emerge — that you don’t throw away the old people or the mentally ill or disabled people.”

Mr. Bogaerts, the psychologist, recalls the police being called only twice to resolve major problems involving boarders in Geel over the two decades.

But incidents do occur.

“Some days are a bit easier than others,” Ms. Peetermans said.

Liliane Peeters, 63, and her husband, Jozef Vleugels, 65, had been fostering a boarder for 11 years when they decided to take in a second person.

As an empty nester who had recently retired, Ms. Peeters felt her home had space for one more. After a few minor adjustments, such as working out that the new boarder struggled to make sandwiches, things seemed to settle.

“I wanted to take on that care, I have that somewhere in me,” she said. “I actually wanted someone I could make the sandwiches for.”

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Jozef Janssens with his foster family, Liliane Peeters and Jozef Vleugels, seated on a couch in their home, looking at a large white speckled dog.
Jozef Janssens, center, a boarder, with his foster family, Liliane Peeters, right, and her husband, Jozef Vleugels, in their home after dinner.
Jozef Janssens with his foster family, Liliane Peeters and Jozef Vleugels, seated on a couch in their home, looking at a large white speckled dog.
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Mr. Janssens, 64, in a baseball cap,  glasses and dark shirts, looking in a mirror at his home in Geel.
Mr. Janssens, 64, has been living with Ms. Peeters and Mr. Vleugels for 11 years. He said he liked his day, which starts at 7:30 a.m., to be organized around a predictable set of tasks.
Mr. Janssens, 64, in a baseball cap,  glasses and dark shirts, looking in a mirror at his home in Geel.

A problem was that the bathroom was on a different floor from the boarder’s bedroom, down steep stairs, and at night, Ms. Peeters asked the new boarder not to use it to avoid falling.

One morning, she woke up to find the boarder in crisis after having defecated on the bedroom floor. Ms. Peeters got gloves and a brush. A case worker helped. The boarder moved back into the hospital.

“There are limits in the care people can and will give,” said Mr. Bogaerts, the psychologist. “If things like this happen, if someone has already been living in a foster family for 10, 15 years or more, then they will manage to find a solution.” He added, “But if it happens in the beginning, it’s too much.”

Other episodes are less confronting, but profoundly heartbreaking.

When Ms. Peetermans, who today fosters Iosif, Etty and Mr. Hayen, was a girl, she would often see a man named Robert, a boarder staying with a family on her street, cutting roses.

Years later, when Robert’s foster family aged, Ms. Peetermans decided to take him in. Robert became like an older brother to her son.

He had been living with them for seven years when, during the pandemic, his condition worsened. Last September he moved into the psychiatric hospital, where she now visits him regularly.

Ms. Peetermans broke down recounting the story.

Asked what the hardest part of fostering was, she didn’t hesitate.

“If they have to leave, that’s the hardest thing,” she said.

Image
Ms. Peetermans and her three boarders having dinner on an outside courtyard against a darkening sky.
Ms. Peetermans having dinner with Etty, Iosif and Mr. Hayen.
Ms. Peetermans and her three boarders having dinner on an outside courtyard against a darkening sky.

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