The Working Community
Fountain House, a much replicated intentionally created Working Community and the winner of the 2014 Hilton prize, serves seriously mentally ill adults who live in and around New York City. Fountain House has developed a unique treatment to diminish the lack of motivation which is the core negative symptom of serious mental illness.
Negative experiences, primarily task and interpersonal failures and rejection cause a diminution in the motivation of people with psychotic defenses. Positive experiences, primarily task and interpersonal successes, at any point in the etiology of the illness or after it has been diagnosed improves motivation. And in so doing the patient’s level of functioning and quality of life.
The Negative Symptoms
Recently the National Institute for Mental Health’s initiative ” Measurement and Treatment Research to Improve Cognition in Schizophrenia” (MATRICS) has determined that lack of motivation, is the core negative symptom of schizophrenia and an important influence on cognition and functional recovery.(1) As a result cognitive dysfunctions and negative symptoms once thought to belong to a single negative symptoms category of deficits in people with serious mental illness have been separated into two related categories. One focusing on cognition, which affects a person’s abilities and the other on lack of motivation which affects the implementation of those abilities. Taken together they impact functional recovery. (2) Another category called secondary negative symptoms result from the social consequences of the illness. Poverty, loss of supportive social systems, self stigma, low self esteem, low self efficacy and confidence are examples. (3) Negative symptoms and cognitive dysfunctions precede and are the probable cause of the positive symptoms that define what mental illnesses are. They are persistent over time, observable in the etiology of mental illness, do not respond to neuroleptics and are enduring and predictive of poor outcomes. And although drug treatments may have a helpful effect on positive symptoms there is evidence that they worsen cognitive and negative symptoms. (4) Finally since a variety of studies have suggested that negative symptoms occur in individuals with bipolar disorder and psychotic depression it appears that their effects are problematic not only for people with Schizophrenia but also all other forms of serious mental illness. (5)(6)
Given this statement by the NIMH “These cognitive dysfunctions and negative symptoms, have not been adequately addressed by current treatments “(Op cit 1 ), this article is well timed and relevant.
Foussias and Remington in an article reviewing the history of the negative symptoms of schizophrenia concluded that because of the recognized influence of a lack of motivation on cognitive dysfunctions and because a lack of motivation is the negative symptom that inhibits functional recovery, lack of motivation is the core negative symptom of serious mental illness. (7)
This effect of motivation on cognitive functioning is best summarized by Dr. S.M. Silverstein, a cognitive researcher at the Center for cognitive Medicine University of Illinois, “when working with people with schizophrenia, it is critical to enhance motivation, as this is intimately linked to attention, task engagement and performance”. Dr. Silverstein goes on to say “what works in changing cognitive dysfunction Schizophrenia is a milieu program in which patients live and work together in an overall learning environment rather than focusing on specific cognitive functions, in such an environment if the person is optimistic and feels good about the tasks, are reinforced intrinsically in the environment, they become motivated to participate which will positively affect cognitive functioning”. It is Dr. Silverstein’s belief based on the evidence that isolating and treating single cognitive processes do not generalize into functional gains, and therefore the only treatment that has a lasting effect on cognition is one that changes the overall self efficacy, esteem and confidence of the person (8).
In addition to the influence lack of motivation has on cognitive processes and functional recovery, it is this lack of motivation that people with schizophrenia say causes much of their personal distress (9) and the strains in relationships which for some results in the loss of their natural support system (10). Finally the poor quality of life with its poverty, inadequate healthcare, poor health habits, and loss of a network of support, linked to a lack of motivation is the probable cause of the horrifying statistic that “the life expectancy among people with serious mental illness is 25 years less than the general population” (11).
One Theory on how Motivation is Diminished
Many studies confirm the fact that subtle neurocognitive dysfunctions early in life based on traumatic events or bio chemical or bio structural brain anomalies lead to developmental failures in childhood, a sensitive time of life. (12) (13) (14). These ongoing frequent negative experiences continue on to adolescence another sensitive developmental stage of life (15) and on to adulthood in the form of interpersonal, work and school failures and rejections which results in the early development of low self esteem. According to Brown and Dutton people with low, self esteem over generalize the effects of failure, have more stress, react to failure with strong negative emotions and a great deal of emotional pain. They conclude that since failure hurts more in people with low self esteem, they try to protect themselves from the pain of failure by avoiding situations in which they are likely to fail. (16) In addition, the result of all of this failure and emotional pain can lead to a sensitization to stress through an unrestrained HPA axis in response to these ongoing stress related failures. This physical sensitization to failure can in turn lead to structural damage in the brain thereby increasing cognitive damage and possibly leading to psychosis. (20) Also since these same ongoing and frequent failures and rejections are the focus of consciousness, are given more weight when people evaluate, themselves, elicit more cognitive activity, tax the person’s resources, create a loss of control and feelings of helplessness, they can cause a psychological sensitization in the form of either a fear of failure and or an expectation of failure, culminating in a defeatist attitude and a lack of motivation. (17) In an article by Grant and Beck a defeatist attitude was found to be a mediating variable between cognitive impairment, negative symptoms (lack of motivation) and poor functioning. (18) After psychosis has struck the negative experiences, in the form of societal and self stigma,(19) (20) the hospitalization experience,(21) the continued interpersonal, school and work failures,(op cit 16) certain side effects of aggressive drug treatment (22) and the loss for some of their natural support systems,(23) continue to exacerbate the already developed defeatist attitude and oppress an already weakened sense of self. In an article by Stefanie Pfeifer et al people diagnosed as schizophrenic who had high scores on a cognitive failure questionnaire, which measures the frequency of self reported subjective cognitive failures had significantly higher depression, sensitivity to stress and avoidance of social contacts because of a fear of failure (24). It is no wonder then that a person who uses psychotic defenses and is then labeled a schizophrenic exhibits low self efficacy, low self esteem and possibly a lack of emotional expressivity, the hallmarks of the motivational problems that will hamper recovery, influence cognition and cause so much distress.
Side by Side Practice at Fountain House
The goal of the Fountain House Working Community is to help its clients ( members ) become motivated to improve the quality of their lives and develop a sense of personal self worth. To this end, treatment focuses on providing members a place in the community that encourages motivation, through successful experiences and impactful relationships.
Fountain House has been intentionally organized into a community in which its staff and membership side by side are needed to accomplish its work. Side by side work is the vehicle for the progressive successes experienced by the membership. Successes that facilitate increases in self efficacy and a willingness to take risks, which translates into an increase in motivation and a decrease in defeatist thinking.
Working together staff and members prepare and serve a daily luncheon to over 300 staff and members. They operate a gym program and teach exercise and wellness classes. They gather data and publish research reports. They run a popular and well known art studio that displays and sells the work of member artists. They teach classes and tutor members in a variety of practical and academic subjects and support members attending academic institutions. They assist in the operation of a farm, collecting eggs and vegetables that are then served in the luncheon program, as well as tending to the herd of alpaca and llamas. They actively participate in training of students and the many people that come from other states and other counties who have or are in the process of establishing their own working communities. They work together in the process of intake of new members. They give tours and explain the working community programs to the large number of visitors that come. They work together in reaching out to members who have been absent or who are in need of some kind of assistance or are in danger of isolating. They publish a daily and weekly newspaper, run the switchboard, and advertise upcoming events. They participate in planning meetings and committees of all types. They in ways to numerous to discuss here, work to help members adjust to independent living in the working communities extensive housing program. They work in or provide coverage in, the Transitional Employment program which gives members the opportunity to try a real paid job in the dominant culture as a step in recovery. They help in fundraising events and the hiring and evaluation of staff. They operate a greenhouse whose flowers are use to beautify the working community space and whose plantings are used create healthy food alternatives. They plan and execute recreational programs three evenings a week, on Sunday afternoons and on all holidays, utilizing the Fountain House building and the Highpoint farm with its swimming, boating, biking and hiking opportunities.
The Side By Side Process
“A small performance success that persuades individuals they have what it takes to succeed often enables them to go well beyond their immediate performance attainment to higher accomplishments and even succeed at new activities or new settings” (25) Bandura pg 81).
The first part of the Side by Side treatment process involves choosing a needed task that a particular member is likely to succeed at. Mastery of the task is the goal. This might mean that the worker will break down an activity into sub tasks to find a job consistent with a particular member’s ability at that time. Second, assuming an authentic and influential relationship between the staff worker and the member exists, the worker is in a position to offer support, lower stress and correct fearful thoughts. Third, there is usually more than one way to do a job, working side by side allows the worker to explain the best way to do the task, relate to others who are part of the task and maintain any equipment that is necessary to the task, all of which is important to mastering the work. Forth, a member must understand how the task will benefit them and the community. Without a clear explanation motivation to persevere in the task is undermined. Fifth, working side by side permits the worker to regulate the amount of time the member is engaged in the task. Time in a task is related to stress tolerance an issue that can be the difference between a positive and negative experience. Similarly expecting a member to perform the task on their own without first achieving mastery is usually a prescription for a failure. Also even when mastery has been achieved expecting regular performance of the task day after day requires an ability a member may not yet possess. Sixth, asking a member who has successfully mastered a task to participate in the training of a new member as a way of offering the support of a role model whose similar member status can create the thought “if he can do it so can I”. Seventh, a staff skill in side by side work is to walk the line between positive feedback and realistic feedback. The member needs truthful feedback but it should be communicated in a positive and constructive manner with less talk and more demonstration. Eighth, working side by side gives the worker an opportunity to teach the various ways the skills involved and mastered in a task can be utilized in other tasks or situations. This part of the process is called “generalization of work and interpersonal skills”. Ninth, when the time is right the worker must withdraw from the side by side helping process and let the member do the task alone. It is at this point in the process that successfully doing the task alone leads to the positive feeling that comes to all people, when they experience intrinsic reward, mastery, and the permanent increase in their personal sense of efficacy. Tenth, at this point in the process staff and the member should discuss a new task that they could do side by side. This new task should be built on the previous success with added skill requirements in task complexity, or increases in time necessary to do the task or amount of social interaction required or all three. Finally if consistency of task performance is an issue, an important skill might be learned if the member was to continue the previous mastered task regularly .
Transitional Employment as Side by Side Treatment
Transitional Employment is a program designed to offer members the opportunity to experience success on a real job in the community. It is an extension of the “side by side” treatment process begun at Fountain House in the real world of business and industry. In the Transitional Employment program, the job is real, the employer is real, the pay is real and the requirements for successful participation are real. Each Transitional Employment placement has six month duration and usually has a four hour a day requirement and Fountain House guarantees year round coverage to employers. This guarantee can be given because staff are prepared to protect ownership of the job, if need be, by doing the job themselves. Clearly, creating a need in the Fountain House working community for members able and willing to take on these work assignments. Doing needed work, representing Fountain House, keeping the job safe for use by other members and relearning the generic qualities for success on a job , are the key motivational elements in this program. This theme of simultaneously doing for oneself and others is played out as a value and practice in all Fountain House activities and projects. A second requirement of side by side practice is that the member experience success in the work. Since staff are the first to learn the work and the employer’s requirements they are able to correct fearful thoughts, clarify goals, utilize other members who have previously mastered the job, give honest and supportive feedback and generalize the specific skills inherent in the job to other work or situations. After mastery has been achieved and self efficacy has been increased the worker and the member can discuss the next progressive step.
The Role of a Significant Relationship in Side by Side Treatment
“It is easier to sustain a sense of efficacy when there are difficulties if a significant other expresses faith in one’s capabilities” ( op cit 38 Bandura p 36)
A significant relationship between a member and a staff coach, is a goal at Fountain House. Which when achieved is influential authentic, trusting and mutual which by definition helps facilitate motivation. It is a relationship in which staff can, help a member, take risks, reduce anxiety, accept feedback generalize their successes and plan additional steps.
In conclusion, we believe that a significant staff member relationship and progressive successes in the side by side processes at Fountain House and on Transitional Employment improves the motivation of people with severe mental illness by reducing the defeatist attitudes that underlie it. Consistent with the NIMH call for programs and research that targets the negative symptoms of schizophrenia; we intend to research our hypotheses by creating a research design utilizing the defeatist attitude questionnaire developed by Beck and Grant (22 op sit) and the Intrinsic Motivation Inventory for Schizophrenic Research developed by Choi, Mogani and Medela. (26)
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