Radically Inclusive Mental Health Care

Mental health care in the United States is inadequate. But models of radically inclusive community-based mental health care programs may offer a partial solution. 

The Challenge of Mental Health Care

The city in which I live lacks adequate systems of support and care for people experiencing mental illness. The result is many individuals who are houseless, suffering, and left with few good options for securing shelter, support, stability, or community. 

These tragic outcomes are far too common. The existing mental health care system, while arguably improving, is still devastatingly inadequate and causes substantial harm.  

At a high level, some psychologists argue that current mental healthcare isn't truly person-centered; it is overly bureaucratic and too focused on predetermined timelines and pathways to recovery. 

Other problems are more visceral and disturbing. 

For example, millions of people each year are coercively, forcibly institutionalized in psychiatric facilities. These can often be very traumatic experiences. One psychiatric survivor described their experience in Canada’s psychiatric system as "years of white-knuckling it through months-long wait-lists just to get an intake appointment, late nights in the ER with panic attacks that wouldn’t stop, wards with doors that lock behind you with a gut-wrenching click." 

Moreover, the rate of people with mental illness who are incarcerated is an atrocity. According to one study from 2017, roughly half of all incarcerated people in the U.S. have a diagnosed mental illness. This indicates that something is seriously wrong with our existing systems of care. 

And because of its largely Western biases, psychiatry often fails to provide effective mental health care for groups such as certain Indigenous peoples, who may have different conceptions of health and wellbeing. 

I used to often wonder whether there was a better way to provide support and care for people with mental illness. But, like many people, I usually just assumed that it is a tragic part of life with no good solutions. 

That is until I first heard about Geel. 

Introducing Geel 

In the small town of Geel, Belgium, the residents have a centuries-old tradition of welcoming people with mental illness into their homes and community and caring for them as long-term members. 

Geel offers a place for people who are unable to cope on their own and who don't have other supports. These include people with chronic psychiatric issues like schizophrenia, personality, and mood disorders. 

It is, in essence, a therapeutic community. 

But it is not primarily about psychiatric treatment. The people with psychiatric diagnoses are not called patients. They are known as "guests," "boarders," or simply part of the family, and they share a life with the residents of the community, often for decades. They are treated like members of the family and community -- because they are. 

This model seemed to go against what I had previously learned about mental health care. Instead of primarily viewing psychiatric diagnoses as "problems" belonging to "patients" requiring "treatment," often in segregated "facilities," the Geel model understands people with psychiatric diagnoses as people, first and foremost. The community appreciates difference, rather than medicalizing and stigmatizing it. 

How and Why The Geel Model Works 

The Geel model creates a baseline of radically inclusive acceptance. It also demonstrates a person-centered approach to mental health care. 

As one psychiatrist put it: "Accepting what is, not demanding what should be, seems to be the motto." [1]

A Geel resident explains the secret of its success by pointing to three factors: 

• "Geel acknowledges and accepts the human needs of boarders. 
• The city responds to those needs, rather than acting on unfounded or exaggerated fears, by providing social outlets and events as well as opportunities to do meaningful work. 
• Most importantly, those with mental illness in Geel are members of not just a foster family, but a foster community as well." 

There is tremendous evidence of success. For one, the average length of stay in the family care program is roughly 30 years. Moreover, due to the general well-being and a sense of security among guests, levels of medication often drop significantly. [2]

A description of the system in Geel explains how instead of focusing on problems with the guests, the aim is to highlight their abilities and strengths; the focus is on care, not cure. It further explains that: 

"Most radically, the program works to reshape society to be fully inclusive instead of forcing people with mental illnesses to try to accommodate an intolerant society. The end goal is for boarders to be able to live in a world that accepts them for who they are." 

Another reason it works so well is that inclusivity can be healing, while exclusion can lead to further harm. And many other cultures are isolating. As one psychologist describes it: 

"When there is little opportunity for personal contact with [severe mental illness]...this limited, unrealistic exposure to mental illness can feed community fear. It can also help to keep alive the insidious social stigma associated with mental illness, a stigma that contributes to isolation for persons with [severe mental illness] and complicates successful diagnosis and treatment."   

In other words, our current system often isolates people with severe mental illness, rather than including them, or offering the option of inclusion. This limited exposure can further stigmatize mental illness and inhibit understanding and care. 

In contrast, the Geel model of community-based and family care normalizes psychological differences. It allows everyone to see that mental illness is a part of life. And it fosters participation, acceptance, and understanding, which leads to compassion and support. 

Of course, the Geel model has also been criticized. The debate over the efficacy of the family care system was known as “The Geel Question”: Was the boarder system more humane than that of the psychiatric institution, and was it something that could be replicated elsewhere? 

Since the introduction of modern psychiatry as a way to supplement family care and the boarder system, this debate has largely been settled. As the experiences of many people with psychiatric diagnoses make clear, community-based care can be profoundly therapeutic. Geel's approach is considered by many, including the World Health Organization (WHO), to be an example of best practice. 

It is also important to note that the current Geel model works with modern psychiatry. Thus, people experiencing mental illness get the benefits of the incredible advances in psychiatry, while still maintaining a primary focus on inclusion and care. It's not an either/or situation: the approaches are complementary. 

Community-Based Mental Health Care in the U.S. 

If the Geel model is considered best practice, why had I never heard of the family care system until a few years ago? And why is Geel seemingly one of the few places in the Western world where this practice exists? 

After doing some research, I found that similar models do exist. In fact, American psychiatrists have been interested in the Geel model of family care for over 150 years, and have implemented similar programs in the U.S. 

As early as 1885, family care programs were successfully operating in the United States. Psychiatrists carefully documented these programs and noted that "patients placed in family care were generally found to be comfortable, contented, and in good bodily condition." [3] Early analyses concluded that the family care/boarding system was practically feasible and generally ran smoothly, with no violent incidents [4]. 

By the 1940s, there were family care systems operating in Pennsylvania, Utah, Illinois, Maryland, Michigan, California, and Rhode Island. [5] There was an abundance of willing host families, which was encouraging because many people had questioned whether the different social environments in America would be receptive to family care. [6] But contrary to pessimistic predictions, families embraced persons with mental illness, no evidence of exploitation was found, and family care thrived for a period in the U.S. [7] 

These findings dispel the myth that the family care system is unique to Geel and thus impractical elsewhere. In fact, family care has already been done successfully in American communities.  

Today, community programs still exist in the U.S., although they are not very widespread. 

Examples include the Village (which has spread to Full Service Partnerships -- a comprehensive community-based system of care throughout California); Broadway Community Housing; and the Gould Farm, established in 1913 and located in Monterey, Massachusetts. 

Another example is Toward Local Care (TLC), a program run by the state of South Carolina, which aims to help clients remain in the community and decrease reliance on and costs of psychiatric hospitalization. TLC's "Homeshare" program is very similar to the Geel model, and clients overwhelmingly experience significant improvement in perceived quality of life after entering TLC programs. 

All of these programs focus on mental health and wellbeing through human relationships, meaningful work, stability and support, and fostering a sense of community. Together, the various programs discussed here demonstrate that community-based care can be -- and currently is -- done successfully in the U.S. 

However, there is also a large mental health gap between what is available in wealthy countries and poorer countries. [8] A lack of resources and trained professionals in low-income countries often leads to less community mental health care. And in many countries, forms of involuntary or forced treatment are commonly practiced. [9] 

This gap shows the importance of both developing local solutions as well as providing international assistance and resources when they are needed and wanted by communities. 

The Geel Tradition Fades As New Challenges Arise 

Despite its success and its role as an inspiration and model for effective mental health care systems internationally, the tradition of family-based care in Geel has been fading due to several factors. One reason is the increased use of psychiatric medication: more individuals with clinical diagnoses can now live with varying degrees of independence. Deinstitutionalization, medication, therapy, and supported living systems have made care in the community the norm. 

Fortunately, the Geel system has evolved to accommodate these changes even as it cares for fewer people. The improvement and integration of modern psychiatry with the Geel system show how Western psychiatry can coexist with, and supplement, community-based mental health care. It is not an either-or situation. Rather, each individual person has different needs that can be served by a combination of different approaches, including therapy, a supportive community, a stable home environment, and medication. 

Yet another reason for the decline of the Geel system is that few families are able or willing to take in boarders. One reason is that government support -- in the form of stipends -- for the program has decreased, making it more difficult for families to care for additional people.

Moreover, most families no longer work on farms or around the home, so it is more challenging to do traditional day-to-day integrated care. And modern cultural shifts, like the desire to have the freedom to travel, disrupt the patterns on which daily care is based. 

These are all obstacles to any modern community-based family care system in a wealthy industrial society. Implementation of such a system in an American city will have to address these challenges. 

These problems are also related to the increased isolation of the nuclear family so common in middle-to-upper class communities in America. I plan to expand on this idea in a future post. For now, let's note that the isolation of the nuclear family, and the reduced connections with extended family and community experienced by many Americans, have led to a greater sense of insecurity and greater burdens placed on individuals. Because fewer people are burdened with more responsibility, taking care of each other is harder. 

Moreover, in the U.S., millions of people struggle just to pay rent and put food on the table. And the social safety net is full of holes or nonexistent for many. In these situations, it is unreasonable to expect people to take on the responsibility and financial cost of caring for strangers with mental illness. 

In other words, creating systems of support and care is not just a mental health issue, it is a societal problem. As author and historian Mike Jay puts it: 

"Who would not wish to live in a community where such extraordinary resources of time, attention and love were available to those who needed them – but who these days can imagine being in a position to offer them?"

Many of us feel burdened, unrooted, disconnected, and financially insecure. Under these conditions, it is hard to imagine devoting such significant time, energy, care, and resources to a vulnerable person. 

The Shift to Community-Based Care 

Many mental health professionals would probably argue that this shift has already been occurring, and they have a valid point. 

In recent decades, there has been a massive shift toward deinstitutionalization. The success of psychiatric medication has allowed many people with mental illness to live and thrive in their communities. And programs like Assertive Community Treatment (ACT) and others discussed above have facilitated greater community integration and holistic care (at least in the relatively few places where they are available). So, in a sense, we are already moving toward community-based care. 

However, as noted at the beginning of this post, while we can acknowledge that some progress has been made, we must realize that we still have a long ways to go. This is especially true for young people experiencing mental illness and distress. For example, in Alaska, hundreds of foster youth have been sent to facilities out-of-state because there are inadequate community-based mental health programs in Alaska. 

A shift toward more and better community-based care programs would be a positive step. Many successful examples of community-based care exist. Yet people often become discouraged in applying these examples to the existing system because of what they perceive to be a complex and overwhelming problem with no good solution. [10] 

I hope that some of this discouragement can be overcome by better understanding the success of Geel-type programs, and seeing how they could be implemented in our communities. In other words, Geel helps us see how to shift away from a system of fear and isolation, and towards a system of support and acceptance. 

What Does Implementation of Community-Based Care Look Like? 

First, we can continue studying the communities where community-based care is more of a norm. We can learn from these communities and begin implementing or expanding these programs in our own communities. Studying these details can help us imagine how a system like this might work in our own communities. 

For example, in Geel, the acceptance into a family placement typically requires that (a) the acute phase of psychosis or other problems has passed, (b) aggressive behavior needs to be reasonably well under control and there is no history of sexual offenses or serious crime, and (c) patients should be capable of emotional attachment, some form of communication and doing things independently. [11] While these are not always strict rules, they do help us understand the potential scope and limits of a family care program, because we see that not all people could be supported in that way. And they help us see how potential host families could feel more encouraged through having predictable boundaries. 

Another detail is that the foster families in Geel are not trained in psychiatric treatment or care. [12] It is not a medical approach, but a common-sense approach based on experience -- a practice of "radical compassion and kindness." [13] However, when psychiatric expertise would be helpful, there are mental health clinicians available to support families whenever they need it. 

As for the day-to-day life of the guests, half work (at local businesses or in the psychiatric treatment center in town) or attend occupational therapy, while the other half stay at home. All boarders are welcome to frequent one of three community centers. [14]

And, yes, for those of you wondering about the costs -- the Geel-style model is much, much less expensive than psychiatric hospitals or supported living. [15]

Geel can also help us address the relationship between mental illness and violence. [16] The Geel system appears to have successfully prevented violence by people with mental illness and has never had an extraordinary problem with violent behavior. [17] The reasons for this success are varied and include the fact that the community has experience with nonviolent de-escalation and stabilization of potentially agitated or aggressive persons with mental illness, and there is a familiar and reliable support system to do this work. [18] 

The Geel model gives us ideas about which people might be best suited for family care; what training is needed for host families; what day-to-day life could look like; and how to understand issues of violence. 

In the short term, we can push for concrete solutions like more community centers where people with mental illness can spend time; more and better community-based mental health programs; and reform or abolition of coercive psychiatric practices. We can also create educational programs so people can learn to understand and care for those with mental illness; we can teach acceptance and care. 

These can largely be local efforts. But the implementation is only going to occur if there is social and political support. This begins with a culture of acceptance. 

The Cultural Shift 

The transition to radically inclusive community-based mental health care may require a cultural shift. Geel is so unique because there is a long-standing tradition of embracing neurodiversity and supporting those who need additional care: "Because of their exposure to and experience with mental illness, the entire population protects rather than fears members of their community who are mentally ill." [19] 

That said, as discussed above, early family care programs in America showed widespread support and acceptance from families and communities. This suggests that Geel is perhaps not so unique in this respect.

Still, I question whether, with the cultural and psychiatric developments of recent decades, many Americans would be willing to try a similar program. 

I am sensitive to this because when I first learned of Geel, I asked myself: would I be willing to invite a stranger with severe mental illness to live in my home for years? My initial reaction told me a lot about my unconscious biases. However, over time I have come to believe that I would be grateful for an opportunity like that. 

Like many things, the shift will happen over time. If people began inviting and accepting those with mental illness -- and without other supports -- into their families and communities, there would be greater understanding and embrace of neurodiversity. Which would lead to more inclusivity and support. 

I should also note again that this is just one model of care among many. People with mental illness or disabilities are all unique, and each has individual needs and preferences. A model of care that works for some might not work for others. My point is not that all people with mental illness should live as guests with families. I am simply showing that this model has worked for many; that it should be an option; and that greater inclusion of and support for people with mental illness is an important aim to work toward and demand. 

In conclusion, the Geel model -- and others based on it -- has much in common with modern approaches to community-based mental health. But it has changed my perspective through its commitment to inclusivity, acceptance, family relationships, and community participation. 

As two keen observers of the Geel experience noted: "Perhaps Geel just offers one intervention: radical compassion and kindness. And the outcomes are lives lived." [20]

[1] Henck van Bilsen, Lessons to be learned from the oldest community psychiatric service in the world: Geel in Belgium, 40 BJPsych bulletin 207, 209 (2016). Available here.

[2] Id. 

[3] Nana Tuntiya, Making a case for the Geel model: The American experience with family care for mental patients, 42 Community mental health journal 319, 323 (2006). Available here.

[4] Id. at 324. 

[5] Id. at 327. 

[6] Id. 

[7] Id. at 328. 

[8] Graham Thornicroft, Tanya Deb, and Claire Henderson, Community mental health care worldwide: current status and further developments, 15 World Psychiatry 276, 279 (2016). Available here.

[9] Id. at 283. 

[10] Jackie L. Goldstein and Marc ML Godemont, The legend and lessons of Geel, Belgium: A 1500-year-old legend, a 21st-century model, 39 Community mental health journal 441, 442 (2003). Available here. 

[11] Henck van Bilsen, Lessons to be learned from the oldest community psychiatric service in the world: Geel in Belgium, 40 BJPsych bulletin 207, 209 (2016). Available here.

[12] Id. 

[13] Id. at 210. 

[14] Id. 

[15] Id. 

[16] Jackie L. Goldstein and Marc ML Godemont, The legend and lessons of Geel, Belgium: A 1500-year-old legend, a 21st-century model, 39 Community mental health journal 441, 451 (2003). Available here.  

[17] Id. 

[18] Id. at 454. 

[19] Id. at 456. 

[20] Jackie L. Goldstein and Marc ML Godemont, The legend and lessons of Geel, Belgium: A 1500-year-old legend, a 21st-century model, 39 Community mental health journal 441, 451 (2003). Available here.