The President's New Freedom Commission report challenged states to create recovery-oriented systems and made recommendations for ensuring that mental health care is consumer and family driven. One mechanism proposed was for consumers to play an active role in state and federal mental health policy reform. The commission concluded that when consumers are actively involved in developing the policies that shape mental health services, they are more likely to continue in recovery; to take a dynamic role in managing their services, treatment, and support; and to build meaningful and healing relationships with service providers.
Editor's Note: This article is the 13th in a series of reports addressing the goals that were established by the President's New Freedom Commission on Mental Health. The series is supported by a contract with the Substance Abuse and Mental Health Services Administration (SAMHSA). Jeffrey A. Buck, Ph.D., and Anita Everett, M.D., developed the project, and Dr. Buck and Kenneth S. Thompson, M.D., are overseeing it for SAMHSA.
Although there is limited empirical evidence to guide states in enhancing their transformation goals via consumer involvement, examples of successful models of incorporating consumer and family activities into state initiatives exist. One mechanism many states are developing is statewide consumer networks (SCNs).
Why statewide consumer networks?
An SCN is a group of affiliated consumers and family members, advocacy groups, and organizations that support states in the development of policies and quality assurance activities related to mental health services. These networks also have a substantial influence in strengthening organizational relationships and developing leadership and business management skills among consumers. SCNs have an impact on laws governing mental health practice by providing a consumer voice, which is a fundamental step in ensuring that mental health care is consumer and family driven. Networks also provide consumers with leading roles in transforming service provision, developing and implementing training and research, and putting policies into practice. Incorporating consumers into these roles has a direct effect, not only improving service provision but also reducing the reluctance of people with mental illnesses to seek help.
The Substance Abuse and Mental Health Services Administration has provided descriptions of some of the many activities of networks (mentalhealth.samhsa.gov/cmhs/communitysupport). They include teaching the public that mental health care is essential to overall health, promoting consumer- and family-driven care through training, writing position papers for mental health councils and state administrators, eliminating disparities in mental health systems through regional partnerships, developing media and training materials, promoting recovery and resilience through self-help models, promoting use of technology to access information and mental health care by creating interactive Web sites for consumer information exchange, and implementing technological advances to disseminate information statewide and nationwide.
Several states have successfully supported the creation of SCNs, and their experiences provide valuable lessons on initiation and sustainability. In this column we compare the developmental histories and organizational, leadership, and decision-making models of statewide networks in six states—Alabama, Alaska, California, Maryland, Oregon, and Wisconsin. These states were selected because of their regional diversity as well as their willingness to share their experiences with consumers and state partners. Each network and its leadership continue to provide ongoing technical assistance and support to emergent networks in other states.
In spring 2008 executive directors in each state were sent surveys via e-mail to gather information on the developmental process and organizational structure of the network. Responses were received and follow-up calls were made to gather additional details on network sustainability. Responses indicated that networks encountered initial difficulties in organizing and sustaining themselves and that forming an SCN was accomplished through strong leadership and partnership. This column describes methods used by states that were cited by network executive directors as contributing to the successful continuation of their SCN.
The conventional wisdom is that state involvement in the development of SCNs is minimal, unwelcome, and rare. However, for some of the networks surveyed, the state played an active role in identifying and articulating the need for a statewide network, funding the network's activities, and providing ongoing technical assistance to the network and its staff and leadership.
State agencies have been actively involved in initiating and facilitating the development of consumer networks. For example, in California the State Mental Health Agency supported the creation of an independent SCN. The network is 25 years old, and ten years ago state leadership was instrumental in the network's transition from a grassroots organization, which operated more or less like a collective, to an independent not-for-profit organization. Although incorporation as a not-for-profit entity allows the state to contract with the network and the network to contract or subcontract with other statewide organizations, such as the National Alliance on Mental Illness (NAMI), many advocates and activists believe that incorporation has changed the networks' culture and focus. This perspective has frequently led to the development of working boards on which consumers serve as gatekeepers of the values of the consumer movement and its history.
In Wisconsin the first step in the emergence of an SCN was taken when the State Mental Health Agency used NAMI as a fiscal pass-through to fund consumer-run organizations and projects. In response to fiscal concerns, the State Mental Health Agency reached out to consumer leaders with a proposal to start a network. Consumer leaders, in collaboration with the state, played an important role in helping consumer organizations reconstitute themselves into consumer-run and consumer-driven not-for-profit organizations in which 90% of all board members and 100% of staff are consumers.
Even in states where consumers have independently organized themselves into a network or coalition, state government actions have indirectly raised awareness of the need for a network. In Alaska executive-level staff of five local or regional organizations formed a consortium in response to a statewide request for proposals. The goal of the consortium was to mitigate or eliminate the competition among consumer organizations for scarce resources and create a network that would receive and distribute these funds to consumer organizations. This group has grown to include 18 organizations, with representation covering most of Alaska's regions.
In 1985 Maryland's network began as a steering committee of representatives from four local consumer groups that was created to take positions on policy issues affecting the statewide mental health system. At the time, there were only four consumer groups in four jurisdictions in Maryland. Other groups developed over the years, and in 1992 On Our Own received a Service System Improvement grant from the National Institute of Mental Health's Community Support Program to officially start a statewide consumer group. On Our Own of Maryland was incorporated in October 1992; it is one of the oldest and largest SCNs, with membership consumer organizations in every Maryland county.
Finally, Oregon's network represents what can occur when consumers who share concerns over issues such as seclusion and restraint and disaster preparedness evolve into an SCN without funding or institutional support. This network consists largely of consumers who have no formal affiliations to agencies or projects, although many are involved in other statewide initiatives.
State involvement in the development and nurturing of an SCN is not in itself an indicator of future success or failure. Rather, the most reliable indicators of future success are the organizational, leadership, and decision-making models that are adopted and implemented through a consensus of consumer leaders and supporters. In this section we describe how these models were used by the states to make a lasting impact on the development and sustainability of SCNs.
Networks in the six states surveyed all developed organizational models that were designed to support the overall function of the network. Networks that serve as a fiscal pass-through for smaller organizations or discrete projects that receive direct funding from the state have developed more formal organizational models that promote fiscal and leadership accountability. Maryland, Wisconsin, and California fall into this category. Each network is a not-for-profit organization that directly contracts with the state and other organizations for the delivery of services. These deliverables are clearly defined in contracts; advocacy, peer-support services, and training are some of the direct services that they provide. However, virtually all of the networks' resources are spent providing technical assistance and support to the organizations that they fund.
In contrast, neither Oregon's network nor Alaska's consortium have direct oversight over other consumer organizations. Alaska's consortium is a "fellowship," denoting the personal commitment that members have to each other as well as the transparency of their business dealings. Networks in Maryland, California, and Wisconsin emphasize advocacy and represent the interests of their organizational membership.
It is clear that one size does not fit all and that the model that has emerged in each state has been shaped by the network's function. However, it is also important to note that although state governments had some impact on moving things forward, consumers and their supporters ultimately decided which model best met the needs of consumers, their organizations, and funding sources. Some tension continues to exist in moving from informal and more loosely affiliated individuals and organizations to more formal "business" entities. More than anything else, the personality and leadership style of network management have the greatest impact on balancing often-conflicting interests.
All the networks that are membership organizations have boards consisting of representatives from these organizations. California and Alabama have "at large" seats on their boards. California's at-large seats were added to promote diversity. Most boards are required through either bylaws or articles of incorporation to strive for regional representation on the board. Alabama's board consists of 13 members (currently all consumers), who represent 12 regions and one at-large member. Similarly, Maryland's board is primarily composed of representatives of the various consumer-run programs across Maryland.
In contrast, Alaska's model is innovative and probably endures because of the motivating factors that brought the group together. The consortium began operating as somewhat of a business monopoly, or oligarchy, that the state had to recognize. Once the consumer organizations began collaborating and stopped bidding against each other, the state was "forced" to work with the consortium. Alaska's network came together with concrete purposes. The network members decided to divide up the money and not compete with each other. Key leadership features were transparency, financial disclosure, and leaders' concerted efforts to "give away their power."
Most executive directors who responded to the survey were clear about the roles and responsibilities of board members compared with those of staff. However, some observed that an inherent conflict exists when a board sees itself more as a working board as opposed to a governing body. In practice, all the boards have more involvement in day-to-day activities than one would find in more traditional not-for-profit organizations. Most organizations have reached an accommodation with their boards, which makes it possible to operate effectively as an organization. Alaska's consortium does not take official votes and rules by consensus. When consensus is not reached immediately, the issue is tabled and discussed at a later date. In the end, a network's official structure is not always indicative of how decisions are ultimately reached. It is apparent that the consensus-building model used in Alaska actually operates in an informal way within other networks. Most successful organizations seem to maintain some balance between the two decision-making models discussed here.
States have an array of organizational, leadership, and decision-making processes to choose from as they move forward. These decisions should be made during a process that is driven largely by consumers with the support of the state. It is not essential to have unanimity in the consumer community or among its leaders to begin the process of bringing a diverse cross-section of stakeholders together for what may be best characterized as the first step in the process of supporting the development of an SCN.
All the networks, with the exception of Oregon's, which emphasized recruitment and engagement of pioneers and other advocates, experienced tensions with advocates and activists during their creation. It is difficult to explain the roots of many of these tensions. However, the states recognized that engaging pioneers was important to the growth and stability of the network. Most have benefited from identifying and engaging "boundary spanners" (1) within the consumer community. These boundary spanners are frequently pioneers who have their feet in both grassroots and larger, more formal organizations.
Consumers should be part of the planning process for the initial planning meeting. Technology can be used to increase the involvement of organizations and individuals. It is also important for the state to have reasonable expectations for the initial stages of this process. Strong and visionary leadership by a core group of consumers and their partners is a stronger predictor of success and sustainability than how quickly the network comes together and a lack of dissent. The key is to set a strong foundation for growth, with the understanding that setting and achieving more modest objectives may lead to attaining loftier goals.
States that do not have consumer networks should take advantage of technical assistance and support from states that do and decide what role the Office of Consumer Affairs can and should play. Most of the networks surveyed reported that state support and technical assistance were helpful in the formative stages of network development. Some states have used statewide or local not-for-profit technical assistance organizations. All agree that strategic planning and mentoring by older, more established networks were essential to the survival of the nascent networks.
Clarity and transparency in regard to emerging network interests and short- and long-term involvement of consumers in the planning process are needed to avoid the attribution of negative motives to the endeavor. Such an approach also sets the tone for future collaborations between the state and consumer organizations. The dependence of most networks on the state government for operational funds and the manner in which funds are distributed to member organizations frequently create tensions between the network and state agencies. The trend toward state support may compromise the appearance of the independence of networks. Therefore, it is strongly recommended that network founders diversify the funding base of the emergent network.
As states embark on the process of supporting development of a consumer network, the SCNs surveyed for this report provide guidance on how states should move forward and what steps can be formalized to enhance the likelihood of success in creating and sustaining SCNs.
Acknowledgments and disclosures
This research was supported by grant 283-07-3600 from SAMHSA's Center for Mental Health Services. The points of view expressed are those of the authors and do not necessarily represent the official position or policies of SAMHSA.
The authors report no competing interests.
1.Steadman H: Boundary spanners: a key for the effective interactions of the justice and mental health systems. Law and Human Behavior 16:75–87, 1992