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Consumer/Survivor-Operated Self-Help Programs:
A Technical Report

Chapter Three

CROSS-SITE FINDINGS AND RECOMMENDATIONS

An overall cross-site analysis was conducted with the findings from the qualitative analysis of the thirteen demonstration projects. In completing this task, a matrix was developed to compare and contrast the significant findings between each site in each of the seven domains examined (see Appendix A). The significant similarities and differences in the following domains are presented below:

• Project Goals and Objectives;
• Services Provided;
• Individuals Served;
• Organization and Administration;
• Implementation Issues and Barriers;
• Successes and Evaluation Findings; and
• Recommendations.

It is important to note that there are methodological weaknesses with this approach. As different service models were developed in vastly different environments, there is the potential for many extraneous variables which could impact upon the site-and, therefore, cross-site-findings. Also, as discussed previously, the data are limited in their comprehensiveness and validity. Nonetheless, given that this is a "natural" laboratory, these findings do offer impressions and indications associated with and across these sites.

The last section consists of overall suggestions and recommendations based on the cross-site findings. It is hoped that these will offer guidance for consumers/survivors, State and local mental health authorities, policy makers, managed care organizations, and others involved in the planning, policy development, operation, and evaluation of consumer/survivor-operated services.

PROJECT GOALS AND OBJECTIVES

In examining the findings from the individual projects, a number of similar themes, goals, and objectives were apparent and are discussed below. Please note that goals stated in project materials may differ from the operational goals that actually existed.

In keeping with a major tenet of the consumer/survivor self-help movement, over 75% of the sites indicated that the provision of mutual or peer support was a major goal. This ranged from drop-in center programs in New Hampshire to the shared resource system in California. An array of needs wasaddressed through the provision of mutual support, including socialization, limited resources, employment, and peer counseling.

The provision of direct services to meet critical human needs was also cited by 85% of the projects. The needs included housing, employment, food, independent living skills, protection against discrimination, access to services, socialization, crisis respite care, and outreach. Research has shown that these needs are often cited as priorities by consumers/survivors across the Nation (Ridgeway, 1988b).

Over 50% of the projects noted the general goal of empowering consumers/survivors as a major focus. Again, this is a major philosophical tenet of the consumer/survivor self-help movement. This took the form of increasing both personal as well as collective empowerment via leadership development training, community organizing, technical assistance, and obtaining representation on boards and committees.

The most frequently cited goal (over 90% of the sites) was public education and information dissemination. This ranged from speakers bureaus, to publishing newsletters, to presenting at conferences. Two major foci seemed to be addressing stigma/discrimination and disseminating information about the projects.

Over 75% of the sites noted that rights protection was a project goal. This included both individual case advocacy and systems advocacy and ranged from helping people to access services, to coalition building, to effect needed change. Sites participated in legal and legislative advocacy, as well as hospital monitoring and developing policy and planning initiatives.

Approximately 70% of the sites indicated similar goals. Four of the sites indicated-in one form or another-all of the above five goals within their stated goals or objectives, with five additional sites indicating four of the goals.

Three sites that were unique in their approach were California (with a focus on shared administration and resources among different self-help initiatives), Colorado (developing a "superstructure" to develop businesses), and Vermont (focusing on video production and distribution). While their approaches may have differed from the other alternative service providers, they did share a number of similar goals (e.g., public education, basic needs) with the other sites.

In reviewing the five significant goals/objectives (mutual support, basic human needs, empowerment, public education, and rights protection), it does seem apparent that the philosophy and values of the consumer/survivor self-help movement have a significant impact upon the focus of these projects. In addition, it appears that these efforts focus on priority needs (as identified by consumers/survivors) which are often not addressed by traditional mental health service providers with a focus on professionally driven mental health treatment. Consumer/survivor-operated services are addressing and striving to meet the critical, self-identified concerns of consumers/survivors that are often overlooked in other models.

Services Provided

A range of services were provided via the projects. Documented below are the major categories of services that were provided by these efforts.

More than half of the projects operated drop-in center programs that provided socialization/recreation and other services. This is a model that has gained great popularity as an effective consumer/survivor-operated program. Since the implementation of these projects, drop-in centers have continued to flourish with the development of this model in most States across the Nation.

Over 75% of the projects organized support groups or peer counseling efforts for consumers/survivors. This is indicative of the origins and basis for the consumer/survivor self-help movement-grass-roots self-help groups. A few of the projects were specifically designed to assist in the organizing of local support groups in their region or State. These models help to address the needs for peer support, socialization, and recovery-based approaches that emphasize self-determination, consumer/survivor strengths, encouragement, and hope.

About 40% of the sites provided information and referral services to consumers/survivors to address human and social service needs. These services help consumers/survivors to understand and access services and benefits which may be available to them.

All of the sites indicated that they provided information and education to the public about their projects, mental health issues, etc. A number indicated that they focused on addressing the topic of stigma. One project (Vermont), focused exclusively on public information/education and communications through video production and dissemination.

As mentioned above, advocacy for rights protection and service access was a significant activity by over 75% of the sites. While a variety of advocacy strategies were employed, the facilitation of consumer/survivor representation on boards and committees was a major accomplishment of many of the projects.

Outreach activities were conducted by approximately 40% of the sites. This included outreach to individuals in hospitals, in-home outreach to provide support services to people released from such settings, and street and shelter outreach to consumers/survivors experiencing homelessness.

Nearly half of the sites provided technical assistance and training activities to other consumers/survivors. This ranged from providing training on medication issues to providing technical assistance in other communities to help them replicate these projects.

Direct services to assist persons in independent living were offered by almost 50% of the projects. This ranged from shower facilities, to roommate matching services, to small loan funds for housing or employment expenses.

A complementary, yet significant, finding was that all of the projects employed consumers/survivors in various capacities in their activities. This employment provided valuable experience for the individuals involved. Often, it enabled individuals to cease receiving Social Security and other benefits and become fully employed, tax-paying citizens. It was noted that some of the staff used these positions as "stepping stones" to obtain other employment. Many other individuals participated in non-paid, volunteer employment positions. While the data were incomplete, sites that reported findings indicated that over 260 consumers/survivors participated in employment capacities within these projects.

All of the projects offered multiple services. Five of the sites offered seven of the service categories mentioned above. An additional four sites provided services in six of the categories. Therefore, approximately 70% of the projects provided a minimum of six different services. It is clear that consumers/survivors can provide a broad and diverse range of services. Two of the projects were unique in their focus on select activities: the development of consumer-run businesses and a video production enterprise (Colorado and Vermont).

Individuals Served

The total number of service recipients reported was 5,701 individuals. This does not include the projected 1.6 million homes that were reached via cable television broadcasts by one of the sites. The number of persons served was probably higher as some of the sites did not provide detailed information on the number or characteristics of those persons who were served. Excluding the video project, the number of reported persons served by individual sites ranged from 101 to 3,500.

Demographic findings across the sites are discussed below.

All of the projects indicated that they served individuals with psychiatric disabilities. Interestingly, some had initially developed fairly detailed criteria of who was to be served. Over time, this was found to be cumbersome and broader criteria were employed. As a whole, all of the projects indicated that they served persons with serious mental health problems including per-sons in hospitals or recently discharged.

Projects that reported the income of participants served (over 30%) indicated that they served persons who were in poverty, including individuals experiencing homelessness. One site indicated that 82% of those served were unemployed, and another reported that the average annual income of service recipients was $5,000 per year.

It seems that both genders were attracted to this service model. Four (4) sites reported the majority of members served were men, while three (3) sites reported a higher percentage of members were women.

The reported racial characteristics of members were diverse-however, of those reporting, 70% indicated that a majority of service recipients was Caucasian. Two sites which indicated that a majority of people of color were served were also in highly urbanized areas: the California Bay Area and New York City. A number of projects specifically targeted outreach to people of color communities with varying results.

The range of ages served was from 15 to 80 years old. The average age range seemed to be between 18 and 55 years old, with over 80% of the sites indicating this range.

The one site that reported on this characteristic (CA) indicated that approximately 30% of its recipients were military veterans.

The above data indicate that consumer/survivor-operated projects can serve large numbers of low-income individuals with significant mental health concerns who have diverse backgrounds.

ORGANIZATION AND ADMINISTRATION

Project organization and administration were significant factors that impacted upon the development, operation, and ultimately, outcomes of these initiatives. Only two of the projects operated as bona fide non-profit organizations upon receipt of their funding. Many of the projects learned (and at times struggled) to successfully manage such a structure. Some of the findings in this area are discussed below.

Over the life of the projects, over 90% of the initiatives obtained autonomous nonprofit status with Boards of Directors. Initially, most of the sites operated via a "pass-through" non-profit organization for administrative supports and services, such as financial management. By the end of these grants, almost all had developed the capacity to conduct these functions on their own.

It was reported that over 60% of the sites received some training and technical assistance in organizational and staff development. This ranged from training on marketing, to peer counseling skills, to bookkeeping. There was, however, a lack of a coordinated approach to training and technical assistance as is now generally provided in CMHS-funded multisite evaluation demonstration projects.

Over 75% of the sites reported that they developed project materials to assist with the administration of their organization. This included personnel policies, financial accounting forms, job descriptions, informed consent forms, intake materials, and others. The development of these materials depicts the growth of these organizations.

Approximately 85% of the sites reported increased collaboration with other organizations in the course of their activities. Collaboration to address consumer/survivor needs occurred with many different entities, including: mental health providers, advocates, social services, churches, businesses, universities, and governmental entities.

The total costs for all thirteen projects for their grant years totaled $4.81 million. The amount of funding for project activities (as $167,000 to $540,000 in total costs, with a mean of $370,000 per site for the average three-year period of these efforts. This large variation significantly impacts upon the comparability of these projects. In general, how-ever, each project had a very modest average budget of approximately $124,000 per year. As will be noted later, access to adequate resources was reported as a crucial element in project success.

In reviewing the above, it is apparent that consumers/survivors can develop service organizations with moderate costs that are autonomous and yet collaborate with a myriad of different sectors to meet consumer/survivor needs. In addition, training and technical assistance, along with adequate resources, appear to be key factors in the successful organization and administration of these efforts.

IMPLEMENTATION ISSUES AND BARRIERS

Some of the best lessons are realized by the problems we encounter. These demon-stration projects experienced implementation issues and barriers which offer useful learning experiences for those who are replicating such models.

More than half of the projects reported delays in project implementation which were primarily due to the length of time it took funding to move from the Federal Government to State Governments and, finally, to the projects. As mentioned earlier, in the early phase of most of these efforts, there were additional organizations which acted as fiduciary agents for the consumer/survivor projects which created another layer of bureaucracy affecting funds transfer. In some cases, the startup delays resulted in lowered consumer/survivor interest and partici-pation as well as increased potential for alien-ation from State and Federal bureaucracies.

Almost 50% of the sites reported that a lack of resources impeded their ability to adequately carry out their activities. In a number of the proj-ects, consumer/survivor need outpaced the available funds to address them. This resulted in fewer personnel, as well as a lack of neces-sary equipment for some sites (e.g., typewrit-ers, computers, and video equipment). Many projects believed that more could have been accomplished, given adequate resources.

Changes in personnel were reported by almost half of the sites. This was due to a number of factors, including individuals seek-ing other employment, lack of training, inter-personal conflicts, and health reasons. A num-ber of sites actively pursued staff development training, formal personnel policies, and rea-sonable accommodation practices to address these issues.

Approximately one-third of the sites indicated that a lack of necessary training on organi-zational issues (e.g., financial management) was a significant barrier. As indicated else-where, most of the organizations undertaking these ventures were new themselves and experienced rapid growth. The vast majority of staff had limited knowledge or expertise in nonprofit organizational management issues. The training that was offered on management skills was reported to be helpful, but compre-hensive and coordinated training was missing.

Approximately 30% of the projects reported difficulties working with State bureaucra-cies due primarily to value differences between consumer/survivor efforts and State systems. This resulted in issues surrounding paperwork, evaluation requirements, etc. Interpersonal Conflict

Conflicts between consumer staff and/or board members were reported as barriers by about one-third of the sites. These took the nature of political and philosophical differences, personality and ego clashes, jealousies, and power struggles. These conflicts are not unique to these specific projects, nor are they unique to consumers/survivors. One confounding factor may be the principle of egalitarianism in the consumer/survivor movement, which can be compromised with the introduction of paid staff into such projects.

In several of the sites, it was noted that the project lacked a clearly articulated series of priorities or foci. This was due, in part, to a lack of experience in strategic planning and is related to the organizational expertise mentioned above.

Approximately one-third of the sites also indicated that consumers operating their own pro-grams created tensions with professionals. In a few projects, this took the form of issues of control, paternalism, and "turfism", as professionals were uncertain in their dealings or responded in traditional fashion with these new models, and, at the same time, consumers/survivors, in pursuit of empowerment and self-determination, resisted these responses.

While the above issues will be explored in greater detail in the final part of this chapter, it can be stated in summary that in order to avoid these pitfalls, consumers/survivors need adequate resources, training and development, and mutually respectful collaborations with public and private sectors. It is also interesting to note that a few of the sites had unique issues which they confronted. This included State geographic distances, community resistance to program location, transportation issues, and philosophical debates over having a commercial enterprise orientation versus maintaining an advocacy-based, non-profit status.

SUCCESSES AND EVALUATION FINDINGS

There were wide and varied successes documented within the evaluations of these projects. Overall, the hypothesis that consumers/survivors can successfully develop and operate autonomous service organization was validated.

Perhaps the greatest measure of success is that over 70% of these initiatives were continued with the assistance of other funding sources. These projects demonstrated that they were successful in capturing ongoing financial support. Other significant, cross-site findings, with a focus on person-centered out-come measures, are discussed below.

All of the projects reported that as a result of these initiatives, consumers/survivors had achieved greater levels of independence, empowerment, and self-esteem. Individuals had an improved sense that they could make their own decisions, solve problems, and help others. This helped people to become more confident and to cope better.

All of the projects reported that consumer/survivor quality of life was increased in various aspects. This included better income, housing, and friendships. For some individuals, it meant better knowledge of rights and services. These efforts helped people to stay out of hospital settings and contribute positively to their communities.

The development of social supports was a key success reported by over 60% of the projects. People felt more accepted and had greater numbers of friends. For some individuals, these efforts played a central role in their social lives. These social supports and acceptance helped people to combat the social ostracism and loneliness which often accompanies mental health problems.

As mentioned elsewhere, all of the projects recorded an increase in employment skills and experience among those consumers/survivors participating in these efforts. As poverty and unemployment are other major factors in the lives of consumers/survivors, this success cannot be overlooked.

More than half of the projects reported success in increasing the knowledge of consumers/survivors in various areas such asrights, available services, communication, negotiations, working in a team, and organizational operations. These efforts also played an important role in educating the community about the positive abilities of consumers/survivors, to counter the often negative, stigmatizing portrayals.

Based on these results, it can be said that consumer/survivor-operated services are successful in increasing the overall quality of life, independence, employment, social supports, and education of consumers/survivors.

Other successes cited include that consumers/survivors can be extremely devoted staff members to assist their peers, and that consumers/survivors can overcome difficulties to deliver needed services.

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