Chapter 21

Mental Health Consumer Organizations: A National Picture

Ingrid D. Goldstrom, M.Sc.
Survey and Analysis Branch, Division of State and Community Systems Development
Center for Mental Health Services,
Substance Abuse and Mental Health Services Administration

Jean Campbell, Ph.D.
Missouri Institute of Mental Health
University of Missouri, Columbia School of Medicine

Joseph A. Rogers
Mental Health Association of Southeastern Pennsylvania

David B. Lambert, Ph.D.
TNS

Beatrice Blacklow, M.P.H.
Synectics for Management Decisions, Inc.

Marilyn J. Henderson, M.P.A., and Ronald W. Manderscheid, Ph.D.
Survey and Analysis Branch, Division of State and Community Systems Development
Center for Mental Health Services
Substance Abuse and Mental Health Services Administration

Mental health consumer organizations are those organizations run by consumers¹ for the purpose of providing services to other consumers (National Mental Health Consumers' Self-Help Clearinghouse, n.d.). The principal value underlying consumer organizations is empowerment (Mowbray & Moxley, 1997; National Mental Health Consumers' Self-Help Clearinghouse, n.d.; Van Tosh & del Vecchio, 2000), and the process by which they operate is through peer support (Clay, 2005; National Mental Health Consumers' Self-Help Clearinghouse, n.d.).

The President's New Freedom Commission on Mental Health (NFCMH) (2003) explicitly recognized the critical role that consumer organizations play in the recovery of people with serious mental illnesses. Its final report described consumer organizations as promising best practices and critical features of the infrastructure in a transformed, consumer and family-driven mental health system.

Since 1949, the Center for Mental Health Services (CMHS) (and its predecessor organization in the National Institute of Mental Health), has conducted surveys of the traditional mental health sector (i.e., State and county mental hospitals, private psychiatric hospitals, non-Federal general hospitals with separate psychiatric services, Veterans Administration medical centers, multiservice mental health organizations, and outpatient clinics). Data from these ongoing surveys describe trends in the delivery of services and supports to consumers of mental health services and their families.

Before 2002, consumer organizations and other groups and organizations in the mental health self-help sector had not been surveyed as part of the national mental health data infrastructure; however, their growing inclusion in the continuum of services and supports critical for the recovery of mental health consumers highlighted the need to add them. Therefore, in 2002, CMHS conducted the Survey of Organized Consumer Self-Help Entities (hereafter referred to as the CMHS Survey).

This chapter presents data from the CMHS Survey, including national estimates of the number of mental health consumer organizations; descriptions of their characteristics; and the services, supports, and activities undertaken within them. As the first national survey of consumer organizations, the CMHS Survey reports data that establish a baseline from which to track the changing role of consumer organizations within the context of mental health transformation. Further, this chapter will discuss the policy implications of the findings in light of the 2003 report of the President's New Freedom Commission on Mental Health, specifically with respect to the potential role of consumer organizations in overcoming barriers to mental health care.

Methods

The first step in surveying mental health consumer organizations was to develop an operational definition. As stated earlier, consumer organizations are broadly defined as those that are run by and for consumers. There is a growing literature describing organizations that are peer, consumer, user, or client run; or consumer-operated, administered, managed, or directed (Chamberlin, Rogers, & Ellison, 1996; Kaufmann, Schulberg, & Schooler, 1994; Mowbray & Moxley, 1997; Segal, Hardiman, & Hodges, 2002; Trainor, Shepherd, Boydell, Leff, & Crawford, 1997; Van Tosh & del Vecchio, 2000). However, the variability in definitions of these organizations across studies limits the generalizability of their findings, which are often based on small sample sizes.

The CMHS Survey sought to address some of these methodological issues. It operationally defined consumer organizations within the context of mental health transformation (NFCMH, 2003a, p. 27), in which care is driven, or controlled, by consumers. According to Campbell and Leaver (2003), Van Tosh and del Vecchio (2000), Chamberlin, Rogers, and Ellison (1996), and Johnson, Teague, and McDonel Herr (2005), control in consumer organizations can be specifically identified by such indicators as (1) membership on the board of directors and (2) authority over the budget for the organization. Specifically, if an organization has a board of directors, that board must consist of more than 50 percent consumers. (Agreement about using this proportion was reached through the consensus of the consumers involved in the 1998 CMHS-funded Consumer-operated Service Program Initiative, which studied the effectiveness of consumer organizations). In conjunction with other indicators, consumer control over the budget is considered to be a measure of the autonomy of the organization—an important ingredient of consumer organizations (Van Tosh & del Vecchio, 2000).

For this chapter, then, consumer organizations are defined as those in which more than 50 percent of the people making decisions about how the money is spent are mental health consumers.

Based on this determination, consumer organizations were selected from the full CMHS Survey universe, which contains all mental health mutual support groups and self-help organizations run by and for consumers and family members, and consumer-operated services located in the same geographical areas covered by the National Comorbidity Survey (NCS). The NCS consisted of 172 counties in 34 States, selected by the Survey Research Center at the University of Michigan with probability proportional to size (Kessler, 1994). Data were collected through computer assisted telephone interviews on over 120 variables, including but not limited to questions about the history of the group, organization or service, governance, funding sources, demographic characteristics of participants, and activities.

Based on this definition, 223 consumer organizations fit the selection criteria. This number was then weighted to produce a total of 2,098 consumer organizations nationally. (For further detail about the CMHS Survey and how the consumer organizations were selected, please see Appendix C.)

Findings

Despite variations in structure, degree of formalization, size, and mission, among other qualities, there is considerable agreement in the literature about the factors that make up consumer organizations (Johnsen, Teague, & McDonel Herr, 2005; Mowbray & Moxley, 1997). A number of researchers describe consumer organizations as ideally having a combination of the following characteristics, which can be used as a measure of the autonomy of the organization (Van Tosh & del Vecchio, 2000): (1) the organization is a nonprofit corporation; (2) it has a budget and paid staff; (3) it provides opportunities for volunteers; and (4) its participants are involved in decisions about how the money is spent. The authors found that over one-quarter of consumer organizations (29.3 percent, Standard Error [SE] 7.6) possess this specified combination of characteristics.

The following descriptive data about consumer organizations are organized similarly to Van Tosh and del Vecchio's 2000 description of the first 14 CMHS-funded consumer/survivor operated self-help programs (Van Tosh & del Vecchio, 2000).

Number of Consumer Organizations in the United States

• The CMHS Survey estimates that there are approximately 2,100 consumer organizations in the United States.

History

• Over three-fifths (63.8 percent, SE 5.7) of consumer organizations were started by consumers, 16.9 percent (SE 4.7) by groups or organizations they were a part of or affiliated with, and 8.6 percent by family members.


• The median length of time consumer organizations have been in existence is 11.59 (SE 1.4) years; therefore, approximately one-half of the organizations were started prior to 1990. Perhaps this finding demonstrates considerable stability in operation or can be related to the CMHS funding of the first consumer-operated grant program from 1986-1990.

Staffing

• Percentage of consumer organizations having paid staff is 89.5 percent (SE 4.0).


• Percentage of consumer organizations having volunteers on staff is 74.8 percent (SE 3.3).


• In consumer organizations with paid staff, the mean number of paid staff is 19.3 (SE 4.8).


• In those with volunteer staff, the mean number of volunteers is 14.4 (SE 1.2) (table 21.1).


• Nearly all consumer organizations (95.5 percent, SE 2.6) provide reasonable accommodations for staff.

Funding/Resources

• Nearly all (87.2 percent, SE 4.4) consumer organizations have a budget.


• Approximately one-half (52.5 percent, SE 10.3) of consumer organizations have a budget of less than $100,000; slightly more than one-third (37.1 percent, SE 11.0) have a budget between $100,000 and $500,000.


• Approximately four out of five (80.7 percent, SE 3.9) consumer organizations with budgets receive grants and/or contracts (table 21.2).


• About 14.7 percent (SE 4.3) of consumer organizations with budgets give grants and contracts to individuals or other organizations.


• Around 67.6 percent (SE 4.9) of consumer organizations rent their office space, 26.2 percent (SE 3.5) use donated space, and 15.9 percent (SE 3.5) own their office space.


• Approximately one-fifth (17.9 percent, SE 3.3) of consumer organizations are housed within local community mental health agency office space, and 43.5 percent (SE 5.6) are housed in generic office or commercial space.

Population Served

• English is primarily spoken by the members or clients of nearly all (99.5 percent, SE 0.4) consumer organizations. Close to one-quarter (22.2 percent, SE 3.4) report that Spanish is primarily spoken by their members.

Program Governance

• About 86.6 percent (SE 4.8) of consumer organizations are incorporated as not-for-profit organizations.


• Participants are involved in making decisions about how the money is spent in 83.4 percent (SE 7.0) of consumer organizations.


• Thirty percent (30 percent, SE 7.2) of consumer organizations have both a board of directors or governing board made up of greater than 50 percent consumers and a single consumer participant/staff member, such as an executive director, taking part in making decisions about how the money is spent. An additional 29.4 percent (SE 6.8) have a board without a director. In 15.2 percent (SE 4.6) of consumer organizations, there is a single consumer decision maker such as an executive director with no board. Approximately one-quarter (25.4 percent, SE 8.0) of consumer organizations have neither a board nor a single director making decisions about how money is spent, implying that all decisions are made by participants.

Interaction with the Mental Health System

• Word of mouth (99.9 percent, SE 0.1) is the most common way that people find out about consumer organizations. Although there is a history of ambivalence between consumer organizations and the traditional mental health system, in 2002, 93.1 percent (SE 4.5) of consumer organizations received referrals from that very system (table 21.3).


• Consumer organizations were asked how their participants view working with psychiatrists and therapists; 68.1 percent (SE 6.0) report that their participants view their organization's activities as complementary to those provided by psychiatrists and therapists, while 25.8 percent (SE 6.6) report that they have some participants who see the organization's activities as complementary and others who view them as substituting for psychiatrists and therapists.


• Psychiatrists and therapists are on the paid staff of 15.2 percent (SE 4.6) of consumer organizations; of these, three-fifths (60.4 percent, SE 12.4) identify themselves as consumers or family members.

Services, Supports, and Activities

• The mean number of services, supports, and activities undertaken in consumer organizations is 11.4 (SE 0.3).


• A wide range of services and supports are provided and activities undertaken in consumer organizations (table 21.4).


• Approximately four-fifths (80.4 percent, SE 4.9) of the consumer organizations engage in advocacy or rights protection; within these, legislative action (86.3 percent, SE 3.8) and involvement in antistigma campaigns (72.7 percent, SE 8.1) are the most common activities (table 21.5).


• Four-fifths (79.0 percent, SE 3.3) of the consumer organizations engage in public and community education and outreach; within these, nearly all (97.3 percent, SE 1.2) provide speakers for events in the community at large (table 21.6).


• Three-quarters (76 percent, SE 3.8) of consumer organizations provide opportunities for participants to take part in classes and receive training in addition to activities that may be job related. Approximately three-quarters of these provide classes in recreational activities such as exercise or arts and crafts (77.7 percent, SE 6.5) and "self-care training" (73.7 percent, SE 11.9), defined as stress management, coping skills, and money management skills. Slightly more than half (52.1 percent, SE 8.7) of these consumer organizations provide leadership training.


• Three-fifths (60.8 percent, SE 7.0) of all consumer organizations provide access to case management services or help people to get the services they want or are entitled to; of these, nearly half (49.0 percent, SE 8.7) provide help directly, not on referral. Although nearly all provide help obtaining services from the mental health system (97.5 percent, SE 2.5), of the consumer organizations providing this service, three-quarters or more also help their clients negotiate the broad range of services outside the mental heath system (table 21.7).


• Of consumer organizations that directly help with housing problems, more than four out of five provide help with landlord/tenant problems (86.1 percent, SE 7.1) and in finding housing (85.8 percent, SE 7.5). Slightly less than one-fifth (16.6 percent, SE 8.7) operate housing programs. In addition, 61.1 percent (SE 12.1) help people move. When asked whether the type of housing they help to provide was permanent, transitional, or emergency, approximately one-third (34.55 percent, SE 10.2) report that they help people get permanent housing.


• Peer bridger or peer educator programs are provided in approximately two-thirds (65.8 percent, SE 11.7) of consumer organizations that help people to get jobs (table 21.8). When asked whether they provide assistance with permanent, transitional, or voluntary jobs, approximately two-fifths (39.0 percent, SE 7.2) of these organizations report that they are helping people get permanent jobs.


• Of the consumer organizations engaging in research activities, approximately three-fourths (73.3 percent, SE 7.6) conduct their own independent research.

The CMHS Survey database also contains data on consumer supporter organizations (sample n = 230, weighted n = 1,450), defined by CMHS as organizations in which both consumers and consumer supporters work and in which the budget is controlled by consumer supporters (individuals who provide support in a nonprofessional capacity to a consumer age 18 or older). These are sometimes described as consumer partnership organizations (Solomon & Draine, 2001). In the organizations in the CMHS Survey, the consumer supporters or partners are family members.

When the authors examined differences between consumer supporter organizations and consumer organizations with respect to the proportions providing specified services, supports, and activities, they found that these two types of organizations were similar with the exception of three services. Consumer organizations were significantly more likely to help people to get jobs (consumer organizations 46 percent, consumer supporter organizations 26 percent, chi-square 4.54, p = 0.04), provide a face-to-face mentoring or buddy system (consumer organizations 56 percent, consumer supporter organizations 37 percent, chi-square 4.52, p = 0.04), and provide opportunities for creative or performance arts (consumer organizations 69 percent, consumer supporter organizations 37 percent, chi-square = 8.76, p = 0.005).

Limitations

Before discussing the implications of these findings, some caveats and limitations need to be identified. First, because of the broad definition of "consumer" used in the CMHS Survey (i.e., a person who self-identifies as having received mental health services), there may be instances in which consumer supporters (family members and significant others), sometimes also called secondary consumers, identified themselves as primary consumers rather than family members. Future researchers should be careful to avoid any such ambiguity when constructing definitions. Second, although it may be tempting to compare the CMHS Survey findings with studies reported elsewhere, including papers previously published on the CMHS Survey (Goldstrom et al., in press), the reader is cautioned to make certain that the definitions of consumer organizations are comparable and the number of organizations is sufficient for analytical purposes. Third, although these data provide us with a good snapshot of consumer organizations at a single point in time, they are not outcome data. Therefore, the data tell us nothing about how the consumers, both the providers and recipients, perceive their benefit or objectively benefit from the services, supports, and opportunities provided. Fourth, provision of specified services, support, and opportunities tells us nothing about the need or demand for such activities.

Policy Implications

Only one out of two people with serious mental illnesses seeks treatment. The President's New Freedom Commission on Mental Health cites six barriers to people getting help: stigma, fragmented services, costs, workforce shortages, lack of available services, and not knowing where and how to get care. Consumer organizations are in a unique position among the organizations serving people with mental illnesses. By their very nature, consumer organizations help to overcome each of the six barriers.

Stigma. For individual mental health consumers facing stigma and discrimination, consumer organizations provide a haven where the principles of empowerment, recovery, and mutual support prevail. Public and community education, particularly as it relates to reducing and eliminating stigma and discrimination and rights protection, is of particular concern to the President's Commission. Most consumer organizations actively work to fight stigma and discrimination in the broader community; approximately four out of five (79 percent) engage in public and community education or other forms of outreach to people who are not participants. The President's Commission report specifically recommends the advancement and implementation of a national campaign to reduce the stigma of seeking care. As CMHS moves forward with its national campaign to reduce stigma and discrimination through the Self-Determination Initiative and its Resource Center to Address Discrimination and Stigma (ADS) and the Elimination of Barriers Initiative, the CMHS Survey data demonstrate that efforts to reduce stigma and discrimination already constitute a major role played by consumer organizations.

Fragmented Services. Many of the consumer organizations' services and supports are provided under one roof, in "one-stop shops," so the barriers of fragmentation are ameliorated. As table 21.7 demonstrates, consumer organizations provide links for consumers to services and supports, not only in the mental health sector, but also to the array of services and supports in other areas critical to recovery in the community (e.g., help in getting insurance benefits as well as housing and employment). Consumer organizations help bridge the divide between the mental health system and other systems of care.

Costs. The CMHS database contains only organizations that provide services and supports at no cost to consumers. The costs of providing services and supports are reduced by the use of volunteers and donated space, for example.

Workforce Shortages. Consumer organizations help to address workforce shortages among mental health providers by providing services and supports in communities where mental health providers are scarce or unavailable. Today, as increasing number of consumers are being certified and their services are being reimbursed by Medicaid, we can expect fundamental changes in the character of the workforce serving people with serious mental illnesses.

Lack of Available Services. The President's Commission report (NFCMH, 2003, p. 29) states that the array of community-based options must be expanded. Table 21.4 demonstrates the breadth of services and supports provided through the mental health self-help sector.

Not Knowing Where and How to Get Care. The CMHS Survey data demonstrate that the average consumer organization provides 11 to 12 of the services, supports, and opportunities specified in the CMHS Survey, through any one site. Three-fifths (60.8 percent, SE 7.0) of consumer organizations report that they help people to obtain the services they want or to which they are entitled. The on-site availability of these case management services, coupled with the sheer array of services and supports provided across all systems of care, not just the mental health system, can help consumers meet their information needs efficiently.

In addition, the President's Commission strongly endorses protecting and enhancing the rights of people with serious mental illnesses (NFCMH, 2003, p. 45). The CMHS Survey data demonstrate that slightly more than four out of five (80.4 percent, SE 4.9) consumer organizations report engaging in advocacy or rights protection.

Other areas of concern raised by the President's Commission, which are critical to the SAMHSA mission, are the importance of jobs, housing, and social relationships for recovery. The report (NFCMH, 2003, p. 29) cites as "alarming" the low rate of employment for adults with mental illnesses and states that consumers need employment and income supports. According to the CMHS Survey, nearly half (45.5 percent, SE 6.7) of consumer organizations report that they provide help to people to obtain jobs. In the housing arena, the report acknowledges a shortage of affordable housing and recommends making housing with supports widely available (NFCMH, 2003, p. 42). The CMHS Survey found that more than half of consumer organizations (58.1 percent, SE 6.8) report helping people face these and other housing difficulties. Further, 78.4 percent (SE 6.9) of all consumer organizations report providing social and recreational opportunities.

Conclusions

A transformed consumer-driven system of care can be conceived of as one with consumers and their organizations at its hub, where consumers choose what they need from an array of services and supports (U.S. Department of Health and Human Services, 2005a). Consumer organizations provide, within a nonstigmatizing environment, what the traditional mental health system cannot offer. They integrate the fragmented services needed for recovery that span multiple systems of care, such as housing, employment, and social services. Although partnerships around recovery between CMHS and other Federal agencies serving people with serious mental illnesses are developing (U.S. Department of Health and Human Services, 2005b), State agencies and local communities struggle with shrinking resources and the seemingly impossible coordination of care across multiple agencies with different funding streams. Consumer organizations may be the only organizations in the community that are in fact interacting with each of the disparate agencies and providing integrated services, supports, and opportunities for recovery in one location.

Approximately 2,100 organizations in the United States are controlled by mental health consumers; more than half the number of organizations serving adults in the traditional mental health sector (n = 3,793) (USDHHS, 2004). Optimism about their potential, however, must be tempered by a concern about their general unavailability to most consumers. A recent survey (Hall, Graf, Fitzpatrick, Lane, & Birkel, 2003) reported that within the last year, only 29 percent of consumers received services from consumer organizations. There are 3,066 counties in the United States, and even if consumer organizations were equally dispersed geographically, there is currently less than one consumer organization per county. Further, consumer organizations are always in danger of losing funding; they are often the last to be funded and first to be cut when budgets are tight (Clay, 2005).

It is hoped that data from the CMHS Survey will contribute to the development of replicable models of consumer organizations and outcome studies to move consumer organizations "officially" from the realm of emerging best practices (NFCMH, 2003) into evidence based, or best practices. However, Salzer et al. (2002) comment that consumer provided services have emerged as a best practice based on changing service philosophies that increasingly accept them as an important way to expand the continuum of services, as well as the growing, albeit limited, body of research that has found consistently positive outcomes (Campbell, 2005; Davidson et al., 1999; Hall, Graf, Fitzpatrick, Lane, & Birkel, 2003; Kyrouz & Humphreys, 1997; Solomon & Draine, 2001; Sommers, Campbell, & Rittenhouse, 1999). Cook (2004) goes on to say that the research evidence alone will not meet the needs of those faced with designing tomorrow's service system within a recovery framework. She advocates for consensus building on transformation of the mental health system based on the principles of fairness, efficiency, and consumer choice, as well as empirical evidence.

This debate may continue for some time. In the interim, the data presented here set the baseline for future surveys in this area and provide a basis on which to empirically track the role of consumer organizations within mental health transformation.

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