The Store Front, Fountain House, and the Rehabilitation Alliance

Introduction – Statement of the Problem

As recent events, news stories, and evaluations performed at Fountain House have illustrated, men and women with serious and persistent mental illness (generally schizophrenia, bipolar, or other affective disorders), particularly those who are or have been homeless – roughly 60% of the Fountain House membership – are substantially more likely to have comorbid medical illnesses than the general population.[1]

Fountain House, for those unaware of this model of psychiatric rehabilitation, is a community-based, comprehensive support system established in 1948 by patients and volunteers from Rockland (New York) State Hospital. The first program of its kind in the United States, the Fountain House's innovative and consumer-centered model for recovery has been replicated throughout the United States and abroad. Since 1948, Fountain House has pioneered and developed extensive programs for facilitating the social and vocational adjustment of men and women following hospitalization in public and private mental hospitals and has served over 16,000 individuals through a comprehensive array of accessible, integrated, and long-term systems of care. There are now Fountain House Model Programs in close to 40 countries around the world, and approximately 200 in the United States alone.

With the advent of “atypical” antipsychotic medications (such as clozapine, risperidone, olanzapine, quetiapine, and others) the overt symptomatology of patients is likely to lessen, many times becoming transparent to the eye (eg, no herky-jerky motions, involuntary movements, extreme sedation). This result does not mean that the effects of the newer medications avoid the presence of comorbidities (eg, obesity).

An innovative approach to meeting this challenge is currently being tested in a joint effort between 2 New York City facilities – Fountain House and the Saint Luke's/Roosevelt Hospital Center (STL/R). What we are addressing in this article is the well-documented fact that these men and women are more likely to receive substandard or no medical care, especially in urban areas. There are several reasons for this deplorable situation:

1. The lifestyle of people with serious and persistent mental illness often includes poor nutrition (most live on an income significantly below the federal poverty line, leaving little money for food), exposure to infectious diseases (including TB, STDs, and HIV), and high rates of substance abuse, current or historical (over 65% at Fountain House).

2. People with mental illness typically do not seek out primary medical prevention, and often ignore early symptoms of medical illness when they occur. They generally have a mistrust of doctors and medical institutions, and, therefore, they often do not seek medical treatment until they are in the advanced stages of an illness. Further, medical professionals often view people with mental illness as unreliable reporters, and often discount the symptoms they describe. This is highlighted by the following statistics:

   A recent review of medical histories for 278 Fountain House members confirmed that many are, in fact, in poor physical health with, for example, type 2 diabetes (18%), hypertension (46%), and morbid obesity (48%), putting them gravely at risk for life-threatening medical complications. These figures reflect those reported elsewhere.[2–4] For comparison purposes, The National Center for Health Statistics (CDC) reports that in the general population the incidence of type 2 diabetes is at 6%; hypertension is at 30%, and obesity is 30%.[5]

Primary care physicians (PCPs) often do not treat patients with severe mental illness in their practices, for reasons including unfamiliarity with the identification and management of specific mental disorders and fear of persons with mental illnesses.[6] Therefore, general practitioners often do not have the time, interest, or experience to provide adequate care for such patients.

Scientific evidence from the field of behavioral medicine has demonstrated a fundamental connection between mental and physical health (eg, depression is related to the occurrence of heart disease).[7,8] Research shows that there are 2 main pathways through which mental and physical health mutually influence each other.

Physiologic systems, such as neuro-endocrine and immune functioning, are one such pathway. Anxious and depressed moods, for example, initiate a cascade of adverse changes in endocrine and immune functioning, and create increased susceptibility to a range of physical illnesses.

Health behavior is another pathway and concerns activities such as diet, exercise, sexual practices, smoking, and adhering to medical therapies. Further, the health behavior of an individual is highly dependent on that person' s mental health. For example, recent evidence has shown that young people with psychiatric disorders such as depression and substance dependence are more likely to engage in smoking and high-risk sexual behavior, combined with poor nutrition and physical maintenance.[9]

The treatment gap for people with mental illness is one of the most important issues in mental health today. The magnitude and burden of mental and behavioral disorders are common, affecting 20% to 25% of all people at some time during their life. They are also universal – affecting all countries and societies, and individuals at all ages. Mental disorders have a large direct and indirect economic impact on societies, particularly service costs. Perhaps more important, the negative impact on the quality of life of individuals and families is massive. It is estimated that, in 1990, mental and neurologic disorders accounted for over 15% of the total “disability-adjusted life years” (DALYs) lost due to all diseases and injuries.[10] That study also estimated that by the year 2020, the burden of these disorders will have increased significantly. Yet only a small minority of all those presently affected receive any treatment.[11]

In 1992, as part of a new housing initiative by Fountain House, a supervised residence for homeless, mentally ill single adults was opened, with psychiatric services provided by STL/R. This relationship grew over the next 3 years, leading to the leasing of a storefront near Fountain House where individuals could easily access mental health services. It became clear that with the population being served (primarily homeless or recently homeless), many individuals were in desperate need of primary medical care, which was largely not easily accessible. This led to the expansion of the storefront to include a PCP. Having operated the storefront for 11 years, we believe it now qualifies as an evidence-based practice that must be shared with the medical and nonmedical community; following is a brief description of who we are, the approach being utilized, some examples, and where we would like to go in the future.

Who We Are

As the first program of its kind in the United States, Fountain House endeavors to remain on the cutting edge of innovative and consumer-centered models for recovery, such as addressing the physical wellness of patients that are generally seen as being affected exclusively psychiatrically. Fountain House is an “intentional community” based on the belief that those men and women (hereafter referred to as “members,” not patients, clients, consumers, or any other label) suffering from serious and persistent mental illness can and will achieve normal life goals when provided opportunities, time, support, and audience (fellowship).[12] A complete description of all Fountain House programs and services can be found at www.fountainhouse.org and elsewhere.[13,14]

Special mention must be made of how the Fountain House community views medication, psychiatric, dual diagnoses, and medical needs, none of which are offered as part of its continuum of services. Fountain House plays an important role in helping participants maintain themselves on prescribed medication and in assuring that they continue to have access to the clinical treatment care they need.

For many, there is the opportunity to receive a number of these services at a nearby storefront facility operated by STL/R. Currently, the staff includes 3 part-time psychiatrists, 1 part-time PCP, 1 part-time nurse, and clerical staffing. In addition, a variety of other services are available in the storefront, including the following groups: (1) Weight Watchers; (2) double-trouble meetings (a combination of traditional Alcoholics Anonymous 12-step meetings and the understanding for a need for psychotropic medication, started in 1994 by a group of consumers in New York state; prior to this, Alcoholics Anonymous models frowned on psychotropic medications); (3) smoking cessation meetings; (4) diabetes education and support groups; and (5) nutritional education. Storefront hours are 9 AM to 5 PM, Monday through Friday, and several evenings for the various self-help groups. Because of the presence of the storefront facility, access to various services both in- and outpatient at St Luke's/Roosevelt Hospital is easily facilitated.

The Approach

To begin addressing the problems identified above, which affect some 100,000 men and women in New York City, the Fountain House-STL/R storefront partnership attempts to deliver community-based primary medical care to some 500 members with serious and persistent mental illness. The following are some of the major characteristics of the care provided by the storefront:

• Services which are close to home, including general hospital care for acute admissions, and long-term residential facilities in the community;

• Interventions related to disabilities as well as symptoms;

• Treatment and care specific to the diagnosis and needs of each individual;

• A wide range of services which address the needs of people with mental and behavioral disorders;

• Services which are coordinated between mental health professionals and community agencies;

• Ambulatory rather than static services, including those which can offer home treatment;

• Partnership with caregivers that remains consistent over time, helping to meet individual needs.

The treatment gap for most mental disorders is high, but in the poor population it is indeed massive.[11] People with serious and persistent mental illness have traditionally been perceived as too disabled to participate in mainstream society. Advances in diagnosis, treatment, and more effective psychotropic medications, as well as access to community-based rehabilitation programs, have begun to change this picture. Long-term outcome studies[12,15,16] and first person accounts[17] demonstrate that people with the most serious of mental illnesses can dramatically alter their lives through what has been called a recovery process.[18]

Key to the success of this process, we believe, is the innovative device identified as the Rehabilitation Alliance. This approach to community-based programming for members who have experienced serious and persistent mental illness consists, at a minimum, of a member, physician, and at least one other – either a clubhouse staff person or another member. In this alliance, each individual plays a different, but coequal role. The goal of the alliance is the provision of vocational, social, educational, residential, mental, and physical health services along with the time and support needed to fulfill these opportunities. This alliance is described in detail elsewhere.[19,20]

The following 2 examples illustrate what this alliance can accomplish:

Jack is a 65-year-old member who was given access to the storefront PCP on the recommendation of his rehabilitation alliance. As a result, a cancerous growth on his kidney was detected early enough that surgical intervention has led to remission for the past 2 years.

Brigitte, a 40-year-old member, who had not seen a PCP for over 10 years, was, on the recommendation of the rehabilitation alliance, referred to the storefront PCP. Routine examination led to the discovery of a diseased gall bladder, which was removed some 18 months ago, aiding Brigitte to resume normal activities almost immediately.

Both Jack and Brigitte admit to aversion to seeking out medical care because of prior negative experiences.

Goals

We believe that through this unique approach, the following goals and objectives will be met:

Goal A: Cost-Effectiveness

• All medical and psychiatric services will be centrally coordinated, eliminating duplication of services.

• High-cost services (eg, inpatient care, emergency room treatment) will be reduced or eliminated.

Collateral Benefits:

• Easier and therefore greater access to services.

• Enhanced communication between various service providers.

• Greater customization of services for consumers.

• Uniform provision of (a) type of service; (b) quality of service and; (c) quantity of service.

• Uniform system of reporting, data collection, and analysis.

Goal B: Quality of Care: Consumer Satisfaction and Empowerment

• Individualized plans for treatment and recovery, addressing medical and psychiatric health issues.

• Full involvement by participants in all planning and decision making affecting their care and recovery.

• Coordinated, consumer-driven preventive supportive services.

Collateral Benefits:

• Overall improvement in the physical and mental health of participants.

• Increased participant satisfaction with treatment and services.

• Reduction in unnecessary, costly emergency solutions (eg, emergency room treatment, psychiatric, or medical hospitalizations). For those members who are hospitalized, reduction in length of stay through the use of clubhouse support and facilities.

Goal C: Project Replication

• Establish programmatic standards for Comprehensive Care in New York for men and women with serious and persistent mental illness.

• Collect, analyze, and disseminate Demonstration Project findings.

• Incorporate Project into Fountain House National Training Program to facilitate nationwide replication.

Collateral Benefits:

• Demonstration of the efficacy of the Clinical/Clubhouse partnership through research reports.

• Provide training regarding how to establish and operate similar Projects in other states or counties.

• Establish an effective model that can be replicated on a larger scale in New York City and throughout the state.

Summary

This unique approach to improving the psychiatric and medical well-being of men and women with serious mental illness is a revolutionary one, just as the original Fountain House was in its inception. It represents both a challenge and a potential solution to the problems articulated in this paper; unfortunately a challenge that has yet to be accepted in either the medical or psychiatric field by most practitioners, despite the success attained over the past 11 years through the storefront partnership with Fountain House.

A series of goals and objectives has been identified which, if followed, could lead to substantial economic growth, increased social awareness, and improved mental and physical health for a heretofore significant and significantly neglected population. Much work needs to be done to educate the psychiatric and primary care segments of the health field.

What has been described in this presentation is a pilot demonstration of how these goals and objectives might be achieved. Positive results could be recorded almost immediately through diagnosis, intervention, and remission data, but transference and replication of such methods and results to other settings depends on the good will and vision of healthcare providers.