Reasons for Consumer Involvement
In her preface to a report on an advocacy and organizing project entitled Adding Seats to the Table: A Community Based Approach to Family Homelessness, Bassuk (2001) describes the projects emphasis on providing resources and support that enable families to shape the programs and policies that affect them as both the right thing and the smart thing to do. While briefs for involving consumers in research, policy, planning, and service delivery refer to both the ethical imperative (the right thing) and positive effects on service outcomes and consumer well-being (the smart thing), in an era of outcomes-based management and evidence-based programming, literature on consumer involvement increasingly argues wisdom rather than righteousness. Indeed, this paper focuses on compiling and assessing the research support, as demonstrated by improved outcomes, for the contention that involving people who have experienced homelessness and respecting their preferences and choices produces more relevant and effective services.
However, the fervor to demonstrate that consumer involvement is smart should not obscure compelling ethical and social justice reasons for promoting it. Boote and colleagues (2002), in a review of consumer roles in health research, ask if consumer involvement is fundamentally about increasing the quality and user satisfaction of the end product or does it relate more to the empowerment of users and the democratization of the research process? Their analysis suggests that the former goal emphasizes satisfaction and value for money, but typically entails passive strategies (e.g., satisfaction surveys, consultation) to respond to consumer demands and does not necessarily include an obligation to enable consumers to make those demands (Boote, Telford, & Cooper, 2002, p. 223; see also Salzer, 1997). In contrast, approaches like participatory research and action research can be a means for changing power relations and advancing equity and social justice.
A similar contrast is evident in approaches to managed care. One approach emphasizes efforts to involve consumers in support of managed care goals, recommending practices that will further quality assurance and persuade consumers of the legitimacy of cost containment, priority setting, and care rationing by managed care providers (Sabin & Daniels, 1999; 2001). In contrast, a legal advocacy guide frames consumer roles in contracting for managed care as a struggle for rights and justice involving contention with other stakeholders [who] are well-represented by powerful groups and can exert great influence on how the managed care contract is written, but their interests do not always overlap with those of consumers (Bazelon, 1998, p. 11).
Although Boote and colleagues focus on consumer roles in health research, and the legal advocacy guide on consumer roles in contracting for managed care, the issues raised also apply to homelessness research and policy. Both the stigma of homelessness, with its associated barriers to services and personal opportunity, and the magnitude of power differentials between those experiencing homelessness and those who design and implement research, policy, and services demand particular attention to issues of social exclusion and a special moral imperative to involve consumers in planning and services (Rowe, 2007).
Philosophy and social theory provide a foundation for considering consumer self-determination and integration as essential for social justice. Fraser uses examples of race, gender, and sexual orientation in arguing that overcoming social injustice requires participatory parity, that is, full inclusion in the process of determining how resources are distributed and diverse identities are valued (Fraser & Honeth, 2003). For Sen (1999) and others (see Hopper, in press; Nussbaum, 2000; Olsen, 2001) who use his concept of capabilities to characterize the combination of capacities and resources that enable people to achieve valued roles and identities, social injustices related to poverty, gender, race, and disability all entail capability deprivation. Redress requires organizing resources to ensure both well-being and the exercise of agency or self-determination (Sen, 1999; Hopper, in press; Nussbaum, 2000; Olsen, 2001). Social justice arguments for participatory parity and agency lend philosophical weight to the claim that fostering consumer integration is the right as well as the smart thing to do.
Strategies for Consumer Involvement in Research
Glassers review of consumer involvement (1999) only briefly mentioned research roles for people with experiences of homelessness. Recently, in large multisite studies, people with experiences of homelessness, mental illness, and addiction dependency have been employed as recruiters, interviewers, or trackers and in administrative and coordinating positions sometimes only after challenging researchers stigmatizing preconceptions that consumers lacked ability to learn or use research skills or that their presence in research roles would destabilize others with mental illness (Campbell, 2006b; McMullin et al., 2006; Mockus et al., 2005).
Evaluations of consumer employment in homelessness research have not yet appeared in the literature; however, in studies of mental health services that employed consumers to administer treatment satisfaction surveys in both self-help and professional settings, interviews conducted by well-trained consumers met quality and accuracy standards (Howard & El Mallach, 2001; Lecomte et al., 1999), with small differences in responses to consumer versus professional interviewers (Nilsen et al., 2006). Consumer interviewers reported high job satisfaction, improved feelings about self, increased self-assurance, pride in working, high motivation, and new friends, despite the work involving difficult tasks and some stress (Lecomte et al., 1999).
Individual research centers and consumer-run agencies support consumer research involvement, but it has taken mandates from funding agencies to induce broader inclusion of consumers in academic research on homelessness. The Substance Abuse and Mental Health Services Administration (SAMHSA), with its several multisite services research initiatives related to homelessness, has been the institutional locus of much of this activity. An agency mission statement (SAMHSA, 2005a) emphasizes consumer involvement in all aspects of SAMHSA programming and includes a specific mandate that [c]onsumers and families should be integrally involved in designing and carrying out all research and program evaluation activities. These activities include: determining research questions, adapting/selecting data collection instruments and methodologies, conducting surveys, analyzing data, and writing/submitting journal articles (McMullin et al., 2006; SAMHSA, 2005a).
Making consumer participation a condition of funding has been an impetus for expanding consumer research roles. The process of implementing that mandate has revealed both barriers to effective consumer integration and strategies for addressing them. Based on experience in Phase I of SAMHSAs Homeless Families Program, a detailed Guidance for Consumer Participation advised applicants for Phase II on how to support consumer integration through selection, preparation, and compensation of consumers in the cross-site Steering Committee and local research projects (SAMHSA, 2001).
Through a series of SAMHSA initiatives (Supported Housing, Consumer-Operated Service Programs, Women with Co-occurring Disorders and Violence, Homeless Families Program), consumers have taken increasingly active roles as consumer panel (CP) members, as local site-based staff (recruiters, interviewers, trackers, data entry clerks, research directors, or principal investigators), as staff at the cross-site coordinating center that manages each initiative, and as participants in the cross-site steering committees that give scientific direction to the projects.
Publications policies initially recommended only that a CP member be present for cross-site presentations at professional meetings (SAMHSA/CMHS, 2000). Later initiatives addressed the need to support consumer travel and participation in such conferences (SAMHSA/CMHS, 2002), which allowed CP members to press for inclusion on study panels and to develop a proactive policy of submitting abstracts for presentations at national professional and policy meetings. Through presentations, journal articles, and books, consumers are reporting to both consumer and research communities their experiences and lessons learned about barriers to consumer involvement and effective strategies to enhance integration (Campbell, 2006a; Clay et al., 2006; McMullin & Reid, 2003; McMullin et al., 2006; Meyers, 2002; Mockus et al., 2005; Pennington & McMullin, 2004). McMullin and colleagues (2006), who described experiences of CP members in the Homeless Families Program, identified three sets of barriers to full consumer integration: tokenism; turnover in panel membership; and issues related to time, effort, and expense of participation. They described 10 strategies that fostered effective consumer integration in this multisite project. (See Exhibit 2.)
Strategies and Mechanisms Used to Foster Consumer Integration
in the SAMHSA Homeless Families Program
|Federally mandated consumer participation and support
- Coordinating Center consumer staff
- Consumer included in all aspects of programs
- Federal project officers address integration barriers
|Financial support to cover consumers expenses
- Payments for time and expertise
- Travel advances covering travel and childcare costs
- Coordinate work of consumer panel
- Consumer liaison for researchers and consumers
- Study recruiters, interviewers, trackers, and data entry
- Identify and address travel barriers
- Hotel check-in without credit cards
- Alcohol free rooms and receptions
|Consumer panel meetings
- Share strategies to overcome integration barriers
- Develop recommendations for steering committee
- Small group discussions with federal project officers
|Steering committee meeting logistics
- Define research jargon as used
- Allowing time for consumer questions and input
|Bridge communication and cultural gaps
- Trainings by consumers on study topics
- Continually addressing integration barriers
- Forum on hiring consumers as research staff
|Communication between meetings
- Staff identified to address consumer integration
- Hard copies of emails and materials sent to consumers
- Monthly conference calls to review study materials
|Reducing turnover and increasing retention of consumers
- Mentoring of new consumers
- Development of consumer advisory boards
- Cross trainings on study topics
- Research methods and how to read and interpret data charts
Consumer panels for SAMHSA initiatives have documented a variety of research, service, and personal impacts of their involvement in research. The Homeless Families Program CP influenced conceptual models, study measures, data collection procedures, dissemination of study findings, and even the interventions being tested (McMullin et al., 2006; McMullin & Pennington, 2005; McMullin & Reid, 2003). The Women with Co-occurring Disorders and Violence (WCDV) consumer panelists, identified as consumer/survivor/recovering (C/S/R) women, reported a strong impact on their studys instrumentation, particularly sections covering trauma and parenting, where they developed measures of the unaddressed aftermath of violence (Mockus et al., 2005). C/S/R women documented members experiences through systematic debriefing interviews and focus groups, followed by qualitative thematic analysis, providing moving detail on the sometimes tense but ultimately rewarding process of finding a personal and collective voice and the individual transformations that ensued (Mockus et al., 2005).
Setting the research agenda. Although SAMHSAs initiatives provide a model for integrating consumers in various aspects of large multisite studies, consumers typically only enter the picture after a studys focus and design have been determined. In contrast, British health services researchers report that consumers have been consulted, have collaborated and have controlled initiatives for setting research agendas across a wide range of topics in health and beyond, including homelessness. Consumers impact is greatest when research organizations see political or commercial benefits and involve consumers in setting priorities, not just in assessing the merits of specific topics (EPPI-Centre, 2006). Moreover, productive methods for involving consumers require appropriate skills, resources, and time to develop and follow appropriate working practices. The more consumers are involved in determining how this is to be done, the more research programmes will learn from consumers and about how to work with them (Oliver et al., 2004).
A report on consumer involvement in the peer review process for clinical research at 16 NIH Institutes determined that consumers routinely participated in review panels at 4 Institutes, and only occasionally at another 3. Institutes that routinely used consumers on review panels did so to obtain perspectives of target populations, expertise regarding the feasibility of interventions in real-world situations, and advice on issues related to the use of human subjects. These Institutes offered consumer review panel members adapted or specialized training, and generally one or two consumers participated in each review panel. In the absence of participants accounts or data on decision-making processes and outcomes, however, it is unclear whether consumer participation extended beyond tokenism (Bartlett, 2006).
Community-based participatory research (CBPR). Public health research has long used a variety of approaches (action research, participatory research) that seek more equitable partnerships between researchers and members of communities in which research is carried out (Lewin, 1946; Freire, 1972). These approaches have recently been conjoined under the rubric CBPR (community-based participatory research), which incorporates and codifies many of the defining principles of these approaches: participatory process, cooperative engagement of community members and researchers, co-learning, system development, and community capacity building. As an empowering process that can increase participants control over their lives, CBPR seeks a balance between research and action (Minkler & Wallerstein, 2003; Bridgman, 2006).
A recent review of CBPR projects in public health reports that, despite uneven data on the research process, many projects achieved community involvement in setting research priorities and generating hypotheses; several described improvements in research quality (recruitment, methods, measures, dissemination) related to collaboration; and a large majority of intervention studies described improvements to the intervention related to the CBPR approach (Viswanathan et al., 2004). CBPR proponents have begun to create methods not only for developing such partnerships but for assessing their fidelity to CBPR principles.
Recently CBPR has begun to appear in the arena of mental health (Wells et al., 2006; Nelson et al., 2006) and homelessness research (Bridgman, 2006; Wang, 2003). CBPR has often involved prevention studies conducted in neighborhoods with limited access to resources for health and mental health care, and neighborhood-based advocacy groups have been primary vehicles for research/community partnerships. Challenges result from CBPRs incompatibility with research development and funding structures that require the research problem, study design, and methods to flow directly from theory and prior research findings, leaving little room for the co-learning process that occurs through negotiation of research agendas, hypotheses, design, and methods of particular projects. While HHS has solicited advice on adapting application and funding processes to accommodate CBPR approaches (Viswanathan et al., 2004), both research funding and academic cultures remain challenged by CBPR.
The role and impact of people with personal experiences of homelessness in designing and conducting research have changed significantly since Glassers review (1999), but these achievements have emerged from hard-won struggles. Even in settings that are committed to bringing in consumers, integration has not been easily achieved. Consumers who perform this groundbreaking work, particularly in academic research settings, can find their positions are a source of contention among staff; their experiences of homelessness are stigmatized; their voices are ignored; and a variety of subtle discriminations, such as the absence of interactions with co-workers outside the work environment and a closing of ranks when uncomfortable topics are raised, exclude them from full participation. At the University of Massachusetts-Bostons Center for Social Policy (CSP), an early interest in consumer participation led to the creation of a constituent coordinator position with a broad job description that included the responsibility to engage people experienced in homelessness and poverty. That the actual tasks of this position were usually restricted to project-based activities was largely due to funding challenges for constituent engagement projects. Challenges around staff acceptance of the shift to include consumers can inhibit substantive integration. The CSP strategy was to form an ad hoc committee of committed staff persons, which was tasked with operationalizing constituent involvement. Over an eight-month period, this group defined a spectrum of consumer roles, a process culminating in a formal constituent internship within CSP. This program, launched in January, 2007, provided an opportunity for a person experienced in homelessness and/or poverty to work in one of several apprenticeship areas: applied research, clerical/office support, communications/marketing, or any combination. One of the Centers collaborating partners, One Family Scholar Program, provided a candidate to fill the position.
McMullin and colleagues (2006) described a progression from consumer tokenism, through consumer involvement, to consumer integration. (See Exhibit 3.) They noted that consumers with experiences of homelessness, mental illness, addiction, and justice involvement encounter stigma, no less in research settings than in communities, service programs, housing, and employment. Members of SAMHSA consumer panels have identified several exclusionary aspects of research practice and culture, ranging from the financing and logistics of collaboration to the use of research language that alienates consumers or mystifies the very issues on which consumers are experts. Consumers have developed skills and strategies to overcome stigma and other barriers to effective participation in research, but without mandates and support from funders, academic communities are unlikely to gain the benefits of consumer expertise. Consumer integration in research is still in the early stages, but models of integration currently being developed and disseminated offer a platform for further expansion.
Consumer Tokenism, Consumer Involvement and Consumer Integration in Research
|12 consumers invited to participate in limited or superficial roles
||Small number of consumers invited
||Significant number of consumers from diverse populations actively involved
|12 consumer expected to represent all consumer perspectives
||Key positions including management, research staff, serving on steering committees or oversight boards
|No concrete decision making authority
||Limited decision-making authority
|Mostly volunteer time
||Some compensation for time and expertise
||Competitive compensation for time and expertise
Strategies for Consumer Involvement in Policy and Planning
Consumer involvement occurs across the varied venues where homelessness policy-making and planning take place. While Glasser (1999) included examples of consumer advisory boards (CABs) and of consumer members of advisory boards, newer initiatives with consumers present in meaningful numbers and in multiple roles (e.g., as CAB members, staff, trainers, and consultants) allow discussion not just of consumer involvement but consumer integration.
Local advocacy. At a local level, consumer advocacy groups use organizing and lobbying strategies to impact policies; planning bodies hire consumer consultants and employees; and CABs serve in monitoring, consultative, and decision-making capacities for local government or health care organizations.
Homes for Families is an advocacy organization that brings together families that have experienced homelessness (half of its staff and half of its board of directors have experienced homelessness) with service providers and advocates across Massachusetts to press for policy changes that address root causes of homelessness. Consumer perspectives have priority in the development of the policy agenda, which thus far includes developing prevention programs, expanding housing options, training leaders, and addressing economic and social justice issues (Homes for Families, 2006).
Other local advocacy groups (Family Housing Solutions in Trenton, New Jersey; Humanity for Homeless in Denver, Colorado; and Warriors for Real Welfare Reform in Hartford, Connecticut), with support from the Better Homes Fund and the W.K. Kellogg Foundation, conducted organizing activities with families in their communities, created forums for dialogue on homelessness with elected officials, developed newsletters and educational programs, influenced state welfare-to-work policies, joined other groups to develop a shelter, changed local criteria for housing eligibility, and obtained guaranteed participation in HUD grants (Better Homes Fund, 2001). It is difficult to attribute specific policy outcomes to consumer advocacy, but sponsors of the effort viewed organizing families as a viable strategy for community change. The project reported on both challenges and organizing lessons. (See Exhibit 4.)
The Better Homes Fund and W.K. Kellogg Fund Findings
|Welfare and shelter regulations
||Value of coalition-building
||Active participation by families
||Supporting womens roles as mothers
|Uncooperative social service providers
||Strategies for leveraging policy change
|Limited resources and capacity
||Generating individual and collective empowerment
Protests around local issues have spurred the development of advocacy groups founded and led by people who have experienced homelessness. Examples include Rhode Islands People to End Homelessness, an organization committed to ending Rhode Islands homelessness crisis through affordable quality housing. This group has organized several highly visible protests to draw attention to growing homelessness in the state (People to End Homelessness, 2006). In New York, Picture the Homeless has organized campaigns to modify approaches to subsidizing housing for people leaving shelters; end selective enforcement of quality of life regulations that target people who are homeless; address barriers to housing; and challenge discriminatory supermarket practices that target recyclers (Picture the Homeless, 2006).
National policies on consumer involvement in local policy and planning processes. Since most funding for local homeless services and housing comes from federal grants, many policies are shaped nationally but carried out locally. At a national level, consumers represent local CABs on national consumer panels, serve individually on policy and planning boards or workgroups, and are employed by federal agencies as consultants, trainers, advisors, or administrative staff for policy initiatives. We describe here several approaches to consumer involvement in these national/local interactions.
SAMHSA. SAMHSAs previously cited policy on consumer involvement in research and evaluation is part of broader Guidelines for Consumer and Family Participation in all aspects of SAMHSA policy and program development and particularly in projects funded through its grant programs. This guide comprehensively details expectations for consumer involvement in organizations and programs receiving SAMHSA grants (SAMHSA, 2005a.) (See Exhibit 5.) SAMHSAs policy on cultural issues for funded research and programs is outlined in Guidelines for Cultural Competence and addresses issues of training and staffing, language, materials, evaluation, community representation, and implementation (SAMHSA, 2005b).
Guidelines for Consumer and Family Participation in SAMHSA Grant Programs
||Reflect value of involving consumers and family to improve outcomes
||Consumer and family members involved in substantial numbers in:
- Conceptualization of initiatives
- Identifying community needs, goals and objectives
- Identifying innovation approaches to address needs
- Developing budgets
- Incorporating peer support methods
|Training and Staffing
||Consumers and family members included as staff
- Consumer and family members hired as staff with pay parity
- Substantive training for staff in consumer and family issues
||Recipients of project services
- Informed of benefits and risks of services
- Make voluntary decisions to receive or reject services
||Consumer and family members fully informed of all rights including:
- Information disclosure
- Choice of providers and plans
- Access to emergency services
- Participation in treatment decisions
- Respect and non-discrimination
- Confidentiality of healthcare information
- Complaints and appeals
- Consumer responsibilities
|Administration, Governance, and Policy Determination
||Consumer and family members:
- Hired in key management roles
- Provide project oversight and guidance
- Sit on all boards of directors, steering committees, and advisory boards in meaningful numbers
- Fully trained and compensated for activities
||Consumers and family members integrally involved in designing and carrying out all research and program evaluation activities including:
- Determining research questions
- Adapting/selecting data collection instruments and methodologies
- Conducting surveys
- Analyzing data
- Writing and submitting journal articles
HUD Continuum of Care (CoC). HUD funding is a primary source of support for housing and service programs addressing homelessness. HUD requires local continuum of care (CoC) planning committees to prioritize needs and assemble a single comprehensive application from each locale. Although HUD has begun to standardize governing processes for CoC planning committees, expectations for consumer involvement remain non-specific: CoCs should have a planning body that is broadly representative of stakeholder interests, with 65 percent private sector representation, including consumers who are homeless, or explain why they do not. Local agencies may win points for demonstrating consumer involvement in their HUD programs, for example through CABs, satisfaction surveys, or tenant councils, and for involving consumers in program design and creation (New York City CoC, 2006).
HUD Homeless Management Information Systems (HMIS). Since 1999, HUD has provided standards and technical assistance to phase in local HMIS systems, mandated by Congress to document the extent of homelessness and service usage by individuals who are homeless. HMIS has become a vehicle for expanding consumer participation in policy and planning, as an initial pilot program for involving consumers in HMIS planning and implementation has evolved into a training initiative introduced in communities across the country. Consumer involvement varies. HMIS raises key issues for consumers both as a mechanism for making their needs known and as a potential threat to privacy and confidentiality.
The earliest proposals for HMIS implementation evoked challenges from providers and advocates around privacy issues. Over time, however, consumer advocacy and consumer-designed trainings on HMIS have promoted consumer involvement as a means to strengthen privacy protection and enhance the benefits the system promises. The Center for Social Policy (CSP) at U-Mass-Boston, which initially was a lone voice for consumer involvement in HMIS, envisioned a system that would be informed in part by the people receiving services, as opposed to program administrators and policymakers only. The Center demonstrated that consumer involvement can be part of an HMIS implementation and, in fact, that implementation could not be as effectively achieved without consumer involvement. Encryption, humane interview protocols, consumer perspective on data findings, and HMIS peer-to-peer trainings proved invaluable to implementation. For example, peer training presentations done by CSP consumer staff in conjunction with other stakeholders identified varied roles for consumers (e.g., as peer trainers; advocates; consultants; and leaders of or participants in steering committees, discussion groups, and advisory panels) and individual benefits of consumer involvement (e.g., skills development, enhanced professional and career choices, employment, leadership development, participation in community decision-making groups). This initiative is described as a point where public policy, HMIS, advocacy, and ending homelessness on a personal and systemic level converge (Tripp, 2004, 2005). The training became a national model for communities to follow in local implementations.
Health Care for the Homeless (HCH). Administered by HRSA, HCH supports 182 local projects that annually provide health services for over half a million people experiencing homelessness. Since 1987, HCH has mandated consumer involvement in project governance. Although HCH programs typically obtain waivers of HRSAs requirement that community health centers have consumer majorities on their governing boards, they must document alternative means to ensure meaningful consumer input into program governance, which has typically been through CABs. In 2003, HCHs National CAB (elected by local CAB representatives at HCHs annual national meeting) developed a Consumer Advisory Board Manual (Dailey, 2003) to guide individual HCH programs. (See Exhibit 6.)
HCHs National Council also contracted with an organizing and advocacy group for a pilot project that used consumer-based outreach to collect and analyze data from surveys with 249 consumers at 13 sites. The project recommended: making the outreach/survey process a routine activity for local CABs, with data aggregated at the national level and findings fed back to local projects and CABs; National Council funding to support increased consumer involvement in outreach and HCH governance; clarification of local CAB functions, with incorporation of CABs into the lifeblood of HCH at every level; pursuit of the vision of majority consumer boards of directors within HCH projects; and support for local HCH staff to be more involved in community organizing and advocacy (Boden & Lozier, 2005).
Ryan White Care Act (RWCA) planning councils. The RWCA, administered by HRSA, provides funding of health and supportive services for people living with HIV and AIDS. Localities must coordinate their RWCA applications through local planning councils, which have decision-making authority over allocations of funds. RWCA bylaws for cities with the greatest concentrations of people with HIV/AIDS have specific requirements to ensure planning council membership is representative of local populations affected by HIV/AIDS. At least 33 percent of members must be individuals who self-identify as being infected with HIV, who reflect the demographics of the populations with HIV, and who are not employees, consultants, or board members of RWCA Title I provider agencies. Consumers have a significant voice in RWCA funding and service planning.
Effects of consumer involvement in policy and planning. While federal agencies have become more proactive in promoting or even mandating consumer involvement in homelessness policy and planning, documentation and evaluation of individual and program or system impacts remains thin. First-person accounts of experiences in homelessness policy and planning settings describe service improvements as well as transformative effects on consumers who are active participants (Tripp et al., 2005). Such accounts, which have appeared in broadcast, newsletter, and slideshow formats, provide critical technical information for consumers and preliminary evidence for the impact consumers have on policies and planning.
One qualitative study in an HCH program in Houston used participatory action research to describe policy and planning involvement of CAB members (Buck et al., 2004). An analysis of agendas, minutes, and transcripts identified four prominent themes: operational practices, roles, and processes involved in achieving CAB goals; emergence of group and individual identities; the salience of power hierarchies not only between individuals who are homeless and staff at shelters or service agencies but within the population experiencing homelessness; and a need for more respectful and comprehensive services. CAB members launched a specific project to disseminate information about existing services. Observed and reported impacts on participants included acquisition of new skills for inquiry, planning, and relationship management.
Controlled studies of approaches to consumer involvement in homelessness policy and planning have not been conducted. A Cochrane Collaboration review identified three controlled studies of the effects of consumer involvement in health policy. One compared phone or face-to-face contact versus mailed surveys in a study of consumer health priorities, and two examined effects of consumer consultation on written educational material prepared for patients. The interventions involved passive strategies consumer consultation, rather than collaboration or control and narrowly defined outcomes (readability of material, rankings of health priorities). The studies had methodological weaknesses and showed only modest effects of consumer involvement, but the authors conclude that randomized controlled trials can be used to assess consumer involvement in health policy and planning (Nilsen et al., 2006).
Strategies for Consumer Involvement in Service Delivery
Consumer involvement in homelessness service delivery arose in part because mental health programs failed to reach some people with mental illness who were experiencing homelessness, creating a service need that consumer providers addressed (Glasser, 1999). Homelessness programs have also drawn on a tradition of mutual aid and peer staffing long established in addiction recovery services (White, 1998). In the last decade, examples of both consumer staffing and consumer-run programs have proliferated. At Housing Works, a minority-run agency that provides housing and services for New Yorkers who are homeless and living with HIV/AIDS, 25 percent of employees are people who are or were program clients. They work in diverse roles in the agencys housing and service programs and in its thrift shops, bookstore, and catering business (Housing Works, 2005). National Mental Health America (NMHA), a collaborative advocacy and service organization for people with mental illness that includes consumers throughout its staff and administrative structure, identifies 10 homeless assistance programs operated by local MHA affiliates across the country (NMHA, 2006). Solutions at Work, an agency in Cambridge, Massachusetts, led and run by people who are or were homeless, helps people transition out of homelessness by providing tangible resources, including paid transitional employment, clothing, furniture, moving services, automobiles, computers, and leadership training (Solutions at Work, 2006).
The Consumer Involvement Workgroup, established by state-level administrators of SAMHSAs Projects for Assistance in Transition from Homelessness (PATH) program, recently surveyed the employment of mental health consumers with homelessness experience in 378 PATH programs in 41 states. One-quarter of the programs employed at least one consumer, mainly to deliver outreach (85 percent), referral (62 percent) or case management (58 percent) services. About two-thirds of these were mental health consumers who had experienced homelessness (PATH Consumer Involvement Work Group, 2006). We review below both studies of peer employment in homeless services and mental health programs and the growing body of research on service programs operated by mental health consumers.
Consumers as staff: Peer outreach/case management. A decade ago, Glasser presented a compelling case for the special abilities of consumers to engage people experiencing homelessness in services (Glasser, 1999). Drawing on work by Van Tosh (1993) and others, she summarized several aspects of consumers experiences that facilitate effective outreach, including knowledge of streets and service systems, flexibility and openness to new approaches, understanding of and responsiveness to client preferences and needs, empathy and rapport with people who are homeless, and positive role modeling. Consumer staffing of homeless services has mainly been studied in outreach and case management programs. In a study of peer engagement of persons who are homeless, Fisk and Frey (2002) describe an 18-month supported socialization project that employed two peer outreach workers eight hours a week. After three months of training and orientation, peers were assigned to join existing staff on weekly outreach runs. The peer workers conducted outreach with 50 individuals who were homeless, working closely with 6 who had been previously unresponsive. They developed relationships with all 6 and successfully engaged 4 in mental health treatment and in moving to shelters or housing. These findings on engagement were extended in a larger experimental study comparing peer-based versus usual case management for people with mental illness, which demonstrated the effectiveness of peer engagement early in treatment. At six-month follow-up, participants perceived higher positive regard, understanding and acceptance from peer providers, and initially unengaged clients had increased contacts with peer case managers and decreased contacts with non-peer case managers. Positive regard, understanding, and acceptance at six months predicted motivation and involvement in psychiatric, alcohol, and drug treatment at 12 months (Sells et al., 2006).
The research literature also includes studies that address consumer integration into assertive community treatment (ACT) teams the personal benefits and structural difficulties consumer staff experience and the effects of consumer staffing on housing and other outcomes. A study of consumer case managers in an ACT program for persons who are homeless identified challenges to consumer staff integration into conventional ACT teams and strategies to address those issues (Fisk et al., 2000). (See Exhibit 7.) This study extends findings on peer staffing in non-homeless mental health programs (Kirsch, 2000; Mowbray, Moxley, & Collins, 1998; White et al., 2003), documenting both individual benefits for peer staff (income, skills, safe and positive work situations) and stresses in the workplace environment (inadequate preparation and support, concerns about boundary issues, superficial supervision, and stigma).
Consumer Case Managers in Homeless Outreach Programs ACT Teams
|Consumer status can evoke discrimination
||Educate and train staff
||Enrich team functioning and undermine stereotypes
|Peer staff face decisions about boundary-breaking service interactions
||Ensure adequate individual supervision for peer staff
||Challenge team members to reduce client-staff distances and improve services
|Workplace discrimination occurs in staff interactions and in pay differentials
||Clarify workplace issues requiring reasonable accommodations
Chinman and colleagues studied outcomes of 987 individuals at six ACCESS program sites employing consumer case managers (Chinman et al., 2000). Baseline data showed that people served at these sites had more difficulties (psychotic symptoms, depression, drug use, homelessness) than those at 12 other ACCESS sites. However, within consumer-staffed sites, persons with consumer case managers did not differ from those with non-consumer case managers in clinical, social functioning, or occupational outcomes; in movement to permanent housing; or in therapeutic alliance with a case manager. The findings indicate consumer case managers are as effective as non-consumer case managers, even at sites serving persons experiencing greater difficulties. The study extends evidence on effectiveness of peer support and case management in non-homeless assistance programs (Felton et al., 1995; ODonnell et al., 1999; Herinckx et al., 1997; Solomon & Draine, 2001), adding support for consumer case management as an effective approach for addressing homelessness.
Emerging practice: Certified Peer Specialists (CPS). Stable funding for peer employment has proven difficult to sustain (Glasser, 1999; Mowbray, Moxley, & Collins, 1998). Georgias Certified Peer Specialist program offers an innovative resolution to this issue. The program combines consumer-provided services, consumer advocacy, and consumer influence on policy. It is open only to current or former recipients of mental health services who openly identify as consumers and have had advocacy or advisory experience in addition to demonstrated effort at self-directed mental health recovery (Sabin & Daniels, 2003, p. 497). Certification requires two week-long training modules, followed by oral and written examinations. CPSs act as change agents to model and support consumers in regaining control over their lives and their recovery through specific supportive activities (e.g., developing a wellness plan, supporting vocational choices, providing help utilizing community social support). CPS services are billable to Medicaid, and Georgia requires ACT teams, community support teams, and adult peer support programs to include CPS as a condition of reimbursement, providing unusual institutional support for recovery-focused services and peer employment.
Hawaii, South Carolina, Massachusetts, and Pennsylvania are among the states that have developed certification programs. Arizona, Iowa, Michigan, Washington, and Washington, D.C., have joined Georgia in providing Medicaid reimbursement for CPS services (National Mental Health Association of Southeastern Pennsylvania, 2006). The CPS approach has face validity (Sabin & Daniels, 2003), but as yet, research has not established the effectiveness of the selection and training aspects of the program, its impact on those who become certified, or its impact on ACT and other service models in which CPS staff are used. Accumulating evidence for consumer case managers in homeless assistance programs (Chinman et al., 2000) and evidence for effectiveness of the CPS model could significantly broaden the evidence-based options for consumer involvement in homeless service delivery.
Parallel efforts are emerging to train and deploy peer specialists in service programs for people with co-occurring disorders (Center for Substance Abuse Treatment, 2004) and to add addiction recovery coaches to the mutual support groups and professional treatment programs that currently dominate addiction services (White, 2004). Both emphasize inclusive, culturally sensitive approaches as well as diverse pathways and styles of recovery, a preference for voluntary versus coerced participation, a focus on wellness/wellbriety/global health versus a singular focus on abstinence (White, 2004, p. 6) There is no research on whether or how these interventions affect homelessness.
Organizational advantages of employing consumer staff. Effectively employing consumers in agencies supportive of consumer integration can be beneficial to both the agency as a whole and specific agency services. Consumer staff can bring expertise about system use and recovery to increase the overall balance of staff areas of competence. In addition, working alongside consumers as colleagues can open agency staff and administrators eyes to the real possibilities of recovery for others using their services. As noted in the PATH Consumer Involvement Workgroup report (2006), Successful integration of consumer practitioners into PATH programs sends an important message to traditional staff and to outside agencies and systems that individuals with serious mental illness who experience homelessness can and do recover, and they can play an important role in the delivery of mental health services to their peers.
Consumer-operated services. There are several descriptive accounts of consumer-run programs offering advocacy, housing, peer support, and drop-in services for people experiencing homelessness, but outcomes research on consumer-operated programs has rarely focused on homelessness. However, the processes underlying peer support variously conceptualized as social support, experiential knowledge, modeling of confidence and coping behavior, and the helper-therapy principle (Solomon, 2004) or as a combination of emancipatory and caring functions (Campbell, 2006a) address the kinds of disempowering circumstances that homelessness imposes.
Descriptive accounts: Diverse models and common principles. In the last decade researchers have studied diverse consumer-operated program models: consumer-run ACT teams and other forms of case management (Paulson et al., 1999; Herinckx et al., 1997; Solomon & Draine, 2001); employment programs (Miller & Miller, 1997); an array of drop-in and socialization services; advocacy and educational programs; and peer support services (Yanos, Primavera, & Knight, 2001; Nelson et al., 2006; Ochocka et al., 2006; Clay, 2006; Segal & Silverman, 2002; Nelson, Hall, & Walsh-Bowers, 1998). The best-documented consumer-operated programs are those providing peer support services to people with mental illness as either an adjunct or alternative to professional treatment services. SAMHSAs Center for Mental Health Services (CMHS) recently coordinated a national survey that identified 7,467 such groups and organizations, including 3,315 mutual support groups that reported 41,363 attendees at their last meetings; 3,019 self-help organizations with 1,005,400 members; and 1,133 consumer-operated services that serve 534,551 members/clients annually. While only 12 percent of mutual support groups reported that they helped participants with housing issues, 48 percent of self-help organizations and 58 percent of consumer-operated services did so (Goldstrom et al., 2006).
Given variations in program modalities and services, several schemas have been developed to identify core or defining features of consumer-operated program approaches. Glassers (1999) report emphasized client-defined needs; voluntary participation; choice in degree of participation and program components; clients helping each other; service recipients responsibility for overall program direction and financial and policy decisions; and program responsibility to clients not to relatives, other providers, or funders (Mowbray, Wellwood, & Chamberlain, 1988). Solomons research review proposed five service characteristics as defining ingredients of consumer-run services: mutual benefit, experiential learning, natural social support, voluntary services, and consumer control of services, though only the first three have been tested in rigorous outcome studies (Solomon, 2004). Campbell (2006a, pp. 38-39) identifies 10 emancipatory functions and 10 caring functions rooted in the philosophy of peer-run support programs that distinguish them from professional mental health services. (See Exhibit 8.) SAMHSAs Consumer Operated Service Programs (COSP) study defined eight core principles within five domains (see Exhibit 9) that distinguish COSP from usual treatment, and used them in outcome analyses reported below (Campbell, 2006b; Clay, 2006; Johnsen, Teague, & McDonel Herr, 2006). Particulars differ, but the themes of support, respect, choice, self-determination, and personal agency recur in the various accounts of distinctive features of consumer-operated services.
Distinguishing Peer-Run Support Programs from Traditional Mental Health Services
- Self-definition of needs
- Role modeling
- Information dissemination
- Inclusion in research and policy-making
- Consciousness raising
- Taking responsibility
- Empathic support
- Non-pressured and non-judgmental support
- Holistic approach
- Responsiveness to diversity
- Group support
- Mutual respect
- Experiential knowledge
- Recovery orientation and hope
- Personal growth in helping others
- Safety in crisis
A study comparing consumer-operated case management teams with non-consumer teams in the same consumer-run agency used staff activity logs, focus groups, and participant observation to describe related differences in the work culture of the two kinds of teams. Consumer teams emphasized flexible boundaries, less often asserted authority to leverage client compliance, valued being there with clients over schedule and task-focused interactions, and less often described their work with clients as burdensome (Paulson et al., 1999).
Effectiveness of consumer-operated service programs: Outcome studies. Early studies established the feasibility of consumers of mental health services providing support and services for other consumers (Mowbray, Wellwood, & Chamberlain, 1988; Segal, Silverman, & Temkin, 1995). Recent review articles summarize several decades of outcomes research on peer support and consumer-operated programs for people with mental illness showing that participants have equivalent or better outcomes across several domains including psychiatric symptoms, rates and length of hospitalization, and social integration (Davidson et al., 1999; Davidson et al., 2006; Solomon & Draine, 2001; Campbell, 2006a; Solomon, 2004; Nelson et al., 2006). Effects on homelessness have rarely been examined.
Two recent quasi-experimental studies support consumer-run programs as a promising practice. One study showed that participants in consumer-run services had better social functioning than those involved only in traditional mental health services; psychological variables were significantly associated with social functioning; and the relationship between involvement in consumer-run services and social functioning was partly mediated by the use of more problem-centered coping strategies (Yanos, Primavera, & Knight, 2001). The other found that active participants in Consumer Survivor Initiatives in Ontario, Canada, had less hospitalization, better social support, and equivalent clinical outcomes over the 18-month follow-up, compared to those who were inactive (Nelson et al., 2006).
Three experimental studies have examined consumer-run case management programs. An early study that randomly assigned participants to usual mental health treatment versus consumer-run vocational support in addition to professional vocational services found better vocational outcomes (employment, income, vocational status) for those receiving consumer support, but the design precludes sorting out the effects of peer supports from the professional vocational services (Kaufman, Schulberg, & Schooler, 1994). Solomon and Draine (1995) compared consumer versus non-consumer ACT teams and found consumer team members more often delivered face-to-face services in non-office settings; symptoms, clinical and social outcomes after two years were equivalent. A study that randomly assigned participants to consumer-run ACT teams, non-consumer ACT, or usual care found no differences in behavioral symptoms or clinical or social outcomes including homelessness (Herinckx et al., 1997; Clarke et al., 2000).
SAMHSAs Consumer Operated Service Programs multisite research initiative. In 1998, SAMHSA launched the largest study of consumer-run services ever undertaken (N=1,827), designed to assess effectiveness of COSPs as adjuncts to traditional mental health services. Study participants were randomly assigned to traditional mental health services or traditional mental health services plus consumer-operated services and followed over 12 months using a common interview protocol and multiple outcome measures in existential, clinical, and objective domains. Consumers were involved at all levels of the project.
Three major categories of programs were included in the study: education/advocacy, drop-in, and peer support services. All met COSP criteria as administratively controlled and operated by mental health consumers, with an emphasis on self-help as the operational approach, and all were guided by principles and practices based on emancipatory and caring functions (Campbell, 2006a). To operationalize consumer-operated services, address program diversity, and specify contrasts between the experimental and control conditions, the research team identified and defined COSP common ingredients, and developed feasible indicators with specified performance anchors. Outcome analysis to date has focused on well-being, a construct developed from the validated scales measuring existential domains of experience recovery, empowerment, quality of life, social inclusion and acceptance, meaning of life, hope. Analyses showed greater program use was significantly associated with greater well-being, and a strong relationship between increase in well-being and recovery-oriented program features. Findings held up across the three COSP models (Teague et al., 2006; Campbell, 2006b).
The COSP initiative was not designed as a study of consumers who are homeless, though baseline data show that over 50 percent of study participants had previous homeless experiences, even more in the drop-in programs (Campbell, 2004). Current analyses are examining housing outcomes, but since most participants, including those who had been homeless, had stable residences when they entered the study, investigators do not expect to find significant effects. The role COSPs can play in addressing homelessness remains to be established.
System impacts of consumer-operated programs. Although most consumer-operated programs provide direct services, some seek a broader systemic impact. One program, Staff Supporting Skills for Self Help, aimed to improve the competencies of mental health providers through manualized programs of education, clinician-client dialogues, technical assistance, and introducing self-help into clinical settings. A quasi-experimental study of the intervention found improved clinician competencies, increases in recovery-oriented services, and growing use of self-help in the experimental sites, though local community events appeared to have countered expected effects on stigma (Young et al., 2005).
Janzen and colleagues used mixed methods to study the system-level impacts of four consumer-run organizations referred to as Consumer/Survivor Initiatives (CSIs) in Ontario. Using staff activity logs, interviews, and focus groups, they identified activities and participant-assessed impacts. (See Exhibit 10.) Since this activity was collaborative, it is not possible to isolate the contribution of the CSI to most of these achievements, though interviews with non-CSI participants support participants perspectives on system-level impacts (Janzen et al., 2006).
Findings of Consumer/Survivor Initiatives in Ontario
|Initiatives engaged in:
- Public education
- Political advocacy
- Community planning and collaboration
- Action research devoted to community planning activities
Changes in policy and practice, including:
- Use of peer support specialists and consumer councils in traditional mental health programs
- Increased referrals to Consumer/Survivor programs
- Increases in supportive housing
- Reinstatement of transportation subsidy
- Reversal of funding cuts for mental health services
Our review of consumer involvement in service delivery finds accumulating examples of consumer staffing in programs that address housing and homelessness. Descriptive studies show that peer staff experience both personal benefits and structural difficulties. Quasi-experimental and experimental studies comparing consumer outreach/case management staff versus non-consumer staff find equivalent clinical and social outcomes among service recipients, lending support to the hiring of consumers in service delivery programs as a promising practice. Despite the long history of some consumer-operated programs that focus on housing and services for people who are homeless, there is virtually no research assessing the effects of these programs on homelessness. However, a growing body of work describes key principles of programs operated by consumers of mental health services, and the recently completed SAMHSA study of COSPs has reported improvements in well-being (a composite of recovery-related measures) associated with key principles of consumer-operated service delivery. Further research will be needed to determine whether such programs effectively address homelessness.
Barriers to and Strategies for Consumer Integration
Many barriers to meaningful consumer participation reflect the exclusionary processes and practices that produce homelessness; concentrate its effects on people already disadvantaged by racism, poverty, and disability; and undermine efforts to end homelessness. Homelessness research typically focuses on individual correlates and risk factors, but a large multidisciplinary literature reminds us of the social machinery that creates differential life chances for individuals and the social conditions that unevenly distribute the risk of risk (Link & Phelan, 1995). Various concepts structural violence in public health (Farmer, 2004); structural racism in analyses of race and poverty (Hartman, 2001; Stone, 2006; Wilson, 1996); capability deprivation in developmental economics (Sen, 1999) have been used to summarize processes that compound historical disadvantages and reproduce them in the structure of contemporary labor and housing markets, educational opportunities, safe environments, and access to health care. Consumer self-determination and integration into research, policy, planning, and service delivery will require acknowledging and addressing the range of constraints that marginalize the voices of those who have experienced homelessness.
Race, ethnicity, and poverty. The overrepresentation of people of color, and particularly African Americans, among those who experience homelessness is widely documented but rarely discussed in reports on homelessness. In one of the few analyses of this phenomenon, Hopper (2003) describes the market losses in affordable housing and decent work, mounting strains on extended families, growth of the drug trade, and continued failures of community-based mental health services that made homelessness among African Americans an all but foregone conclusion. Citing Ellison (1980), he notes that the invisibility of black homelessness is not an accident but the product of a determined refusal to see (Hopper, 2003, p. 171).
Earlier work on homelessness described a Latino paradox (Gonzalez Baker, 1996), noting low rates of homelessness despite high rates of poverty, poor housing conditions, and housing discrimination and suggesting that community networks were able to absorb those who would otherwise enter shelters. In many locales, this has changed. Moreover, Latinos who are immigrants encounter special barriers related to accessing available services including language, but also increasingly virulent discrimination and legal exclusions initiated under welfare reform legislation that deny eligibility for a variety of federal benefits (TANF, SSI) even to many documented immigrants (Broder, 2007).
Although the intertwined impacts of race, ethnicity, and poverty are not prominent in written accounts of consumer experiences in research, policy, and planning, individual members of consumer advisory groups confirm that these issues are discussed within consumer panels and in other interactions among consumers of color. Efforts to introduce these insights in research or policy discussions, however, are viewed as divisive and evoke denials from non-consumer professionals, effectively denying voice to consumers of color who want to bring deeply felt experiences into policy or research discussions. Until the structural nature of racial exclusion, reflected in excess disability and mortality, educational disadvantage, housing discrimination, labor market exclusions, and the stigmatizing assumptions that accompany it are recognized, progress in the effort to address homelessness will be limited.
Poverty has been more readily recognized as a barrier to consumer participation, and strategies to offset its immediate impact have been developed. The Homeless Families Programs consumer panel (CP) distributed prepaid phone cards to ensure that members attending steering committee meetings would be able to stay in touch with childrens babysitters, and found that financial support for travel, childcare, per diems and other expenses were essential to sustain consumer participation (McMullin et al., 2006).
Stigma and discrimination. Reports identify stigma and discrimination as recurring features in homeless service settings, though they do not typically consider how homelessness, mental illness, race, substance addictions, HIV, and poverty are causative factors of stigma in these venues.
Link and Phelan (2001) view stigma as a set of interrelated processes labeling, stereotyping, separation, status loss, and discrimination that co-occur in a context of unequal power. They identify three broad categories of stigmatizing mechanisms that operate at individual, interpersonal, and structural levels. This conceptualization implies that effectively combating stigma and discrimination requires addressing not only labeling and stereotyping (interpersonal stigma), and the negative views adopted by stigmatized persons (self-stigmatizing perceptions) but also the discrimination perpetuated by disempowering institutional arrangements (structural stigma). Consumer accounts of personal experiences in homelessness research, policy, and service contexts provide examples of mechanisms that operate and diverse strategies for countering them (McMullin et al., 2006; Mockus et al., 2005).
Stigma and discrimination are particularly problematic for consumer staff who experience them both in the organizations that hire them and in their interactions with contracted provider agencies. (PATH Consumer Involvement Workgroup, 2006). Fisk and colleagues (2000) highlight the importance of recognizing and responding to both subtle and overt discrimination.
Disclosure of consumer status. The decision of employees to disclose their consumer status to employers, other agency staff, or clients is sometimes a personal decision, but at times it may be required as a condition of employment. Depending on the work situation, disclosure of consumer status can highlight an agencys commitment to the recovery model, which includes hiring consumers as staff. Disclosure of consumer status to an individual using agency services may stimulate hope of recovery on the part of the client, or it may aid both the consumer staffs and the clients recovery process. (PATH Consumer Involvement Workgroup, 2006)
Without clear administrative support of consumers as staff and the education of all staff about the value of including consumers on staff, disclosure can lead to difficulties in working conditions. Fisk and colleagues (2000) note that discrimination is likely to occur immediately after consumers make disclosures. In addition to education of all staff, they recommend individual supervision, which allows an opportunity to discuss workplace difficulties; provision of support as needed; and peer support groups, which give consumer staff opportunities to discuss challenges and successes, observe role models, build solidarity, and decrease feelings of isolation on the job.
Interpersonal stigma (harboring low expectations, negative stereotyping) has been both described and challenged by consumers across all domains of research, policy, and planning. In qualitative interviews conducted by a Homeless Families Program CP member, participants described hostile, disrespectful, and humiliating treatment when seeking help from shelter and social service staff. (Stainbrook, 2004, p. 23; Deming, 2002).
Consumer panel members on SAMHSAs research initiative on Women with Co-Occurring Disorders and Violence, who referred to themselves as consumer/survivor/recovering (C/S/R) women, wrote of their initial experiences at the initiatives Steering Committee meetings:
It was confusing and disturbing to be identified with a label and to be asked to speak as a C/S/R woman. In talking about that early experience, one woman said it was like being a performing monkey, another said she felt like a sham, and others used words like marginalized, tokenism, invisible, discounted, and not heard. True discourse developed slowly over time. Other Steering Committee participants seemed to need time to develop better hearing so that C/S/R women were not discounted because of preconceived beliefs about who they were (Mockus et al., 2005, p. 522).
The women from this project collectively pressed for a variety of supports (including a scheduled place and time to meet together outside the formal steering committee sessions; a training academy in research methods; practical support financial, child care for attendance at meetings) that allowed them to find their individual and collective voice. As researchers became more willing to listen, C/S/R womens influence on the project grew.
Fisk and colleagues (2000) describe the subtly stigmatizing interactions that consumer staff experienced in integrated case management teams. They emphasize the importance of educational and training programs for non-consumer staff, individual supervision for consumer staff, and management intervention to create a more positive work environment.
For many people experiencing homelessness, stigma and discrimination are perpetuated by a mental health system that considers every difficulty people with psychiatric problems experience as an indication of mental illness requiring professional expertise, so that even requests for practical assistance with a job or a place to live are handled within the context of disability (Campbell, 2006a, p. 38). Consumers recount experiences in research, policy, and planning settings, in which the recovery movement has served as both resource and strategy in challenging preconceived notions about the abilities of consumers who have experienced mental illness, recovery from addiction, and homelessness (McMullin, 2006; Clay, 2006).
Self-stigmatizing perceptions (lack of confidence, feeling worthless) arising from repeated experiences of powerlessness and discrimination may also inhibit consumer involvement in research, policy, and service delivery. Shih (2004) emphasizes resiliency and strategies individuals use to overcome stigma as well as distinguishing coping approaches, which may be psychologically draining, from empowering processes that produce resiliency and overcome adversity. In one report, families that became involved in organizing activities demonstrated that active participation of homeless families reduces severe isolation, guilt, and shame and can provide critical support (Better Homes Fund, 2001, p. 13). Tripps presentations on opportunities for consumer involvement in HMIS also emphasize that the experience of participating, learning, and being effective evokes personal growth and improved self-image (Tripp, 2005). Some accounts suggest that individuals who are spurred to action to address the injustice of stigma at the level of individual identity often adopt an empowerment approach that leads to engagement in efforts aimed at removing stigma at the collective level (Corrigan & Watson, 2002).
Structural stigma (barriers to participation due to exclusionary social structures, power differentials, and poverty) can occur even when not directly linked to the negative stereotypes often understood to define stigma. The PATH Consumer Involvement Workgroup (2006) noted that eliminating pay differentials is only one aspect of treating staff equally and encouraged agencies to be sensitive to and address differences between consumer and non-consumer staff. The Homeless Families Program CP resolved issues around exclusionary practices, such as using credit cards to hold plane and hotel reservations, communicating by email, and scheduling conference calls and meetings in distant cities during the workday, which are so embedded in professional research culture that their effects on consumers often were ignored and unacknowledged by researchers. The CP coordinator, steering committee, and individual sites implemented CP recommendations to facilitate participation by CP members, including financial support, aid with travel logistics, and advance distribution of hard copies of written material (McMullin et al., 2006). As long as the larger inequities remain, such efforts are needed to offset their exclusionary effects.
Mainstream employment: Barriers and labor force development strategies. Research on employment of consumers with mental health and other disabilities has documented their strong interest in work but low rates of employment. A New Freedom Commission Subcommittee on Employment and Income Support reported that despite initiatives to reduce barriers to work, ineffective vocational services, workplace discrimination, and work disincentives perpetuate low employment rates of people with mental health disabilities (New Freedom Commission Subcommittee on Employment, 2003). Studies of peer employment show that the Americans with Disabilities Act has not had hoped-for effects on workplace discrimination (Fisk et al., 2000; Kirsch, 2000), and a qualitative study of consumer staff in a mental health agency describes mixed consequences of invoking ADAs reasonable accommodation provisions (Francis, Colson, & Mizzi, 2002). The Ticket to Work program, intended to enhance vocational skills, has served only a fraction of those in need, and creaming, that is, serving only those who are easiest to serve, may result in limited access for people with mental illness (Employment Subcommittee, 2003). Few states have implemented a Medicaid Buy-In initiative to allow working consumers ongoing access to health insurance (Employment Subcommittee, 2003; Silverstein & Jensen, 2004).
Financing of peer staff positions through time-limited demonstration grants has also inhibited consumer employment (Mowbray, Moxley, & Collins, 1998; Center for Substance Abuse Treatment, 2004). Georgias experiment with employing certified peer specialists, who have a mandated role in several Medicaid-reimbursable services, is a notable step in enhancing peer employment. While many states have implemented training and certification programs, Georgias reimbursement strategy has been less widely adopted, although there is growing support for increased use of Medicaid-reimbursable services. This is so despite recommendations that peer support services be integrated into the continuum of community care and that public and private funding mechanisms be made sufficiently flexible to allow access to these services, for example, through a carve-out from federal Community Mental Health Block Grant funding to support both integration of peer support services within the continuum of community care and procedures to encourage use of billable peer services under the Medicaid Rehabilitation Option (Employment Subcommittee, 2003; Center for Substance Abuse Treatment, 2004). Opposition to hiring certified peer specialists remains a reality in many organizations.
Funding issues. Funding issues pose additional barriers. Although early studies showed cost savings associated with peer support programs, in some cases this reflected use of peer volunteers or lower rates of pay for peer staff (Solomon & Draine, 2001). Consumers and researchers have criticized use of peer staffing to reduce personnel costs, emphasizing pay parity as a basic principle of consumer staffing, and noting that its benefits come from the value added to program services (Mowbray, Moxley, & Collins, 1998). This is especially critical at a time when cost-effectiveness is a central selling point in any effort to implement innovative services.
SAMHSAs recent research initiatives underscore a need to fund the supports that ensure peer integration through all of a projects phases and levels. This entails allocating resources for transportation and child care, consulting stipends, per diem expenses, and meetings/conference calls among consumers to ensure adequate discussion to clarify issues and formulate responses; contracts with consultants to provide assistance with group process, training in research methods, and advice on public presentations; and mailing expenses to distribute materials that researchers circulate by email (Campbell, 2006b; McMullin et al., 2006; Mockus, 2005). Overall amounts are not large, and a decision to earmark funds to enable consumers to participate as research, policy, and service delivery partners marks a move from token involvement toward consumer integration.