by
Nicole Glasser
Consumer involvement in programs that serve homeless people has been growing in the past ten to fifteen years. There is a growing body of literature that supports the benefits of consumer involvement on the programmatic, policy, and administrative levels. Consumer empowerment ranges from participation in a community meeting or on an advisory board, to hiring consumer staff, to completely consumer-run programs and organizations.
While there is resistance within any system to hand over power to a stigmatized group, once done, the system may find that it has higher quality and more responsive services. Research finds that consumers can perform as well as non-consumer staff and are especially skilled at engaging potential clients. Within consumer-run organizations, the focus of service delivery is on choice, dignity and respect. There are a number of things that federal, state and local governments can do to encourage consumer involvement in decision-making, staff hiring, and the creation and survival of consumer-run organizations.
Lessons for Practitioners, Policy Makers, and Researchers
Having personally walked many high roads and low roads as a consumer of mental health and homeless services, nothing makes more sense to me than allowing clients, or consumers of services, to have a greater say in their services—from the direct provision of services, to policy, administration and evaluation. Who, after all, knows better what they need and want but consumers themselves? Research has, indeed, found that homeless consumers are eager to define their goals and clarify their support needs (Camardese & Youngman, 1996). But due to the stigma associated with homelessness, which is greater if one happens to be mentally ill and homeless, the public and providers have had a tendency to assume consumers do not know what they need, or that what they want is not ‘clinically’ appropriate.
Housing and services for people who are homeless have become more “user-friendly” as systems and programs involve people who are homeless or formerly homeless in decisions about the services they receive. For years, substance abuse treatment providers have employed persons with addictive disorders and rehabilitative agencies have assisted persons with various disabilities to find and maintain employment. With the passage of the Americans with Disabilities Act in 1990, mental health agencies have made similar efforts to employ persons with serious mental illness marking an important advance in the field of mental health care (Fisk, et al., in press).
Homeless people do not have a long history of organized advocacy efforts on their own behalf. The larger self-help or consumer empowerment movement, a movement where individuals organized into groups to help one another, has come a long way since its roots some 30 years ago. But over the past decade, this movement has begun to really make its presence felt among programs for homeless persons. Among mental health consumers, for example, the early period of the self-help movement was a backlash against what consumers saw as an authoritarian and abusive psychiatric treatment system. Former patients banded together into self-help and advocacy groups to heal from the damages sustained while in “treatment,” and to change the system. Some early groups felt the only way to really help each other was through separate, peer-run services.
More recently, the mental health field has grown rich with self-help groups and consumer-run programs which, rather than competing with professionally run programs, are reaching out to a population that professionals have largely left alone—people who are homeless and mentally ill. In many cases, they are working cooperatively with professionals and/or are funded by public mental health agencies. Instead of letting “the system” off the hook for not providing adequate services, many of these programs are involved in advocacy efforts to make the system more responsive (Long, 1988). Because of this movement, much of the literature on consumer(1) involvement addresses homeless persons with serious mental illness, who account for approximately one-third of the total homeless population (Federal Task Force on Homelessness and Mental Illness, 1992).
The National Association of State Mental Health Program Directors (NASMHPD) recognized that mental health consumers have a unique contribution to make to the improvement of the quality of mental health services in many arenas of the service delivery system. In their policy statement, NASMHPD said that the contribution of consumers “should be valued and sought in areas of program development, policy formation, program evaluation, quality assurance, system designs, education of mental health service providers, and the provision of direct services (employees of the provider system). In order to maximize their potential contributions, their involvement should be supported in ways that promote dignity, respect, acceptance, integration, and choice. Support provided should include whatever financial, educational, or social assistance is required to enable their participation” (Wilson, 1990).
When consumers have the opportunity to be involved and have a voice in the organizations that serve them, either through decision-making/policy involvement or employment, everyone wins: service recipients, agency staff, the programs designed to help homeless people, and the systems in which they operate.
What can happen when providers overlook the importance of consumer input is that many will refuse services or treatment outright due to lack of choices. The dehumanization and depersonalization that can happen while receiving services can make what is already a bad situation, intolerable. Not only do consumers experience a lack of dignity and respect from providers, but they feel that many of these agencies do not meet their needs. And many do not. At best, traditional services tend to treat people in a regimented and impersonal manner (Howie the Harp, 1988). At worst, they are coercive, lacking dignity and without opportunity for self-determination (Van Tosh, 1994).
The phrase “treatment-resistant” is often used to describe homeless persons who refuse mental health treatment and other services. But there are often good reasons for the refusal to accept assistance. From the perspective of homeless people, the services that are offered, and in some cases forced upon them, may be completely undesirable and inappropriate. At other times they may not be enough.
The concept of choice is central to the success of consumer-run programs and is an indispensable part of any program that truly serves its clients. Consumer-run programs have found that when these “resistors” of traditional services are offered services and choices by peer/consumer providers, in a non-coercive, voluntary environment, many of them become cooperative and eager to turn their lives around. Everyone benefits with consumer involvement: providers have a chance to increase the quality of services; consumers can step up to empowerment through employment and helping their peers; and clients can learn the value of peer support.
Project OATS (Outreach, Advocacy and Training Services for the Mentally Ill Homeless), an entirely consumer-run organization, is a perfect example of peer support at its best. Laura Van Tosh, former Project OATS Director, tells of her experience doing street outreach with Mr. Smith (not his real name). It reveals the type of commitment consumers, and consumer-operated programs make to help consumers in need. In part, she writes:
In repeated, informal contacts with Mr. Smith I interacted with him as a peer, not as a “professional” relating to a “client”. This approach helped to gain his trust because we interacted as equals. For example, I sat next to him on the ground. I helped him with immediate needs on the streets like obtaining plastic bags to hold his belongings. I accompanied him sometimes for hours at a time during his efforts to obtain assistance from the system. I was available to assist him 24 hours a day, seven days a week. . . Although it was my belief that his most immediate need was housing, I respect his judgment of which area of his life should be addressed first. . . he trusted me to advocate on his behalf, and my commitment to stand by him was an important part of his decision to seek help” (Van Tosh, 1990).
Mr. Smith, after 14 years of falling through the cracks of the traditional service system and being homeless on and off, is now living in supervised housing and obtaining case management services. It should also be noted that, at the time, Ms. Van Tosh was not an outreach worker for Project OATS, but the Project Director. Nevertheless, given the opportunity to connect with a potential client, she did not let her formal job duties deter her from helping this individual. Such is the flexibility and lack of top down structure inherent in many consumer-run programs.
In a similar example, Laura Van Tosh writes about another homeless individual:
“David (not his real name), a homeless man, has suffered from severe mental illness for over 10 years. When I first met David, he was withdrawn, depressed and incoherent. He was also living on the cold streets in the city. At first he would not communicate with me, but over a period of a few days and nights he began to speak to me. Our “conversations” consisted of my listening to bizarre stories of situations he had been in. My simply being with him and listening meant something to David, for he continued to talk to me each day I stopped by to see him. He understood my compassion and desire to help him.
Since I, too, had been homeless and mentally ill, I knew that it mattered whether or not someone took the time to talk to David. I told David that I also had been without a place to live for a while and also had been hospitalized for mental illness. At first he didn’t believe me, but after I showed him the medication I had in my purse, he did. And he smiled. Suddenly I had gained the trust of David and his willingness to try to improve his life. Through our many hours of conversations, David began to understand what empowerment meant. He learned that helping himself was an integral part of good health and that only he could truly help himself. My help was merely a step in the empowerment process” (Van Tosh, 1988).
Soon David had secured housing, rehabilitation support, and part-time employment. David became a valuable member of a consumer-run project. The peer-support process came full circle when David was able to assist a homeless person who wanted services. Moreover, David’s record of recidivism, which was costly to the system, has been supplanted by stability in the community.
These examples stand in sharp contrast to the structure of many service programs that homeless people need. Professionally-driven services are often office-centered and appointment-driven. They put clients on waiting lists for continuing service and require clients to fit into the routines of structured activities. They focus on clinical rather than survival needs. Moreover, many service providers are often reluctant to serve homeless people due to reimbursement issues or stigma (Long, 1988). Clearly, consumer-run services have the potential to fill some very large gaps in the current service system for people who are homeless.
The research literature on the involvement and roles of formerly homeless consumers in policy, research and service delivery is scant. What is there, is drawn largely from the area of mental health where researchers have examined the effectiveness of consumer staff (Dixon, Krauss, & Lehman 1994; Solomon & Draine 1995; Fisk et al., in press; Chinman et al., in press), the impact of honoring consumer preferences for housing on outcomes for residential stability (e.g., Goldfinger & Schutt 1996), and efforts to empower consumers (Cohen 1994; Ware et al., 1992).
Despite the lack of more extensive research in this area, there is a substantial body of descriptive material in the form of articles, reports, and technical assistance manuals that provides the base for knowledge in this new and developing area. What follows is a review of the available literature as it addresses many levels of consumer involvement, from creating consumer advisory boards, to hiring consumer staff to developing consumer-run organizations. Additional evaluation and outcome-based research are needed to confirm and refine the practices and models that are recommended from the field.
Consumer Advisory Boards and Consumers on Advisory Boards
One of the first efforts an agency might make to develop empowerment-oriented approaches is to create a consumer advisory board. Ideally, such an effort will emphasize the shifting of power and resources to the consumers of services. By giving clients a voice in policy formation, a consumer advisory board is a logical extension to empowerment. But groups aimed at increasing client power are likely to encounter organizational resistance, particularly when clients are members of a stigmatized group. Researchers have found that it is one thing for agency staff to support empowerment as an abstract goal but quite another to shift power to clients, away from themselves. This often feels problematic to staff (Cohen, 1994). Moreover, many attempts to empower clients will fall short of transferring power to consumers, yet administrators and staff will report that they now “empower” their consumers (Salzer, 1997).
One way to overcome professional resistance (due to ignorance and stigma associated with being homeless) is through staff training and education. The most effective training will have consumers involved as part of the training staff. Unless managers include consumers in these activities, their presentations will be limited to their own perspective. Joint leadership between consumer staff and non-consumer staff in education and training efforts will also demonstrate an important partnership between the two groups (Fisk, et al., in press). Non-consumer staff needs to be adequately prepared for the shifting of power to consumers before involving consumers.
Once an organization makes a commitment to involve consumers by educating and preparing staff and creating a mechanism for input (i.e., consumer advisory board or adding consumers to its board), administrators need to:
Cohen’s study of a consumer advisory board in a New England agency serving homeless and low-income clients found that the inadequate preparation of staff and lack of real response to consumer complaints resulted in consumer interest in the group falling off quickly. The agency also failed to appoint a staff person who would be responsible for contacting specific individuals for recruitment and follow-up.
Tokenism, defined as one person on a board or committee to represent an entire class of people, is probably the most common error committed by well-intentioned organizations (Van Tosh, 1993; Wilson, 1990). Limiting consumer involvement on boards or committees to one person means that the consumer has no natural allies on the committee, making involvement, an intimidating or potentially threatening experience. Lastly, given that staff are paid for their time when they formulate policy and make administrative decisions, so too, must consumers be compensated to being involved in such matters. Consumers are the experts when it comes to their needs and desires. Financial compensation is an absolute necessity for consumers sitting on policy boards and other administrative committees.
Surveying clients is another good way to include consumer input in program implementation and evaluation. These surveys are an important step in the development and maintenance of “quality” services and programs (Van Tosh, 1993). But using surveys to substitute for true consumer involvement is not meaningful empowerment. They must be used in conjunction with other types of consumer involvement - on the programmatic, policy and administration levels. Moreover, true consumer empowerment would also involve consumers in interpreting the input and feedback on the development of interventions that result from the input. Anything less than participation in the whole process is not empowerment (Salzer, 1997).
Below are three examples of how consumers are involved in advisory groups or on the boards of national and local organizations.
National Coalition for the Homeless was founded in 1982 by local and state homeless coalitions who felt the need for a national voice to address issues related to homelessness and poverty. The organization, which has a total of eight staff persons, employs two formerly homeless individuals, and mandates that 30% of their policy-making board be consumers. In addition to offering technical and support services to local and state homeless groups, the Coalition trains consumers on how to get involved in HUD’s Continuum of Care planning process and general advocacy skills, including how to be an effective board member. “We feel strongly that consumers must lead the way” states Mary Ann Gleason, Executive Director of the Coalition. The organization recently demonstrated this commitment by raising funds to provide scholarships for nearly 100 consumers to attend the Coalition’s annual meeting.
St. Francis House in Boston is a professionally-run day shelter open from 7:30 AM to 3 PM every day. The day shelter offers an array of services to 150-170 “guests” each day. The Guest Advisory Council was the idea of employees at the shelter who asked, “how do we know what our guests need here?” and decided the only proper way to answer that question was to ask the guests themselves. The Council is an open weekly forum in which guests can voice any issue they might have. The group is facilitated by staff, although Harrison Fowlkes, one of the facilitators, explains that they encourage guests to take charge as much as possible.
When the Council meetings first started there were a lot of complaints about staff, the food and clothing distribution, “but over time the group has begun to take on the flavor of a mini-political arena” states Harrison. Because the shelter has been able to respond in tangible ways to guest concerns, the Council is now able to look beyond their individual situations and into issues affecting them as a community. Guests are currently planning to be involved in a march and rally in Boston for more affordable housing because, as Harrison notes, many guests have jobs but still cannot afford the high price of rent in Boston.
The Central Massachusetts Housing Alliance is committed to helping the communities of Greater Worcester and Worcester County respond to the needs of homeless, and near homeless, people by supporting prevention programs, ensuring the availability of high quality and appropriate sheltering and support services, working to increase the supply of affordable housing, and empowering people through education. The Alliance involves consumers at a policy level by encouraging homeless families to join local and state task forces and committees. They also advocate for consumer representation in the Continuum of Care planning process. They are committed to having consumers on their Board of Directors even though it has been difficult for consumers to stay involved for extended periods of time. The Alliance’s sub-committees, such as welfare reform and the emergency assistance campaign, are totally guided by consumers (Farrell, personal communication, 1999).
The research to date suggests that consumers can make a unique and valuable contribution as program and agency staff. This is particularly the case when agencies are trying to engage homeless persons who have serious mental illnesses and/or substance abuse problems, or multi-problem homeless families. Consumers working as staff possess experiences and characteristics that enhance their ability to provide services to individuals who are homeless (Van Tosh, 1993; Fisk et al., in press; Dixon, Krauss, Lehman 1994; Solomon et al., 1994; Solomon & Draine, 1995; Chinman, Lam, Davidson, Rosenheck, under review). In Working For a Change, Van Tosh (1993) describes some of the unique characteristics of consumer staff, including:
Other unique characteristics of consumer staff include the fact that consumer workers are more tolerant of unusual behavior, do not maintain a rigid distance from the people they serve, and show more empathy for individuals’ struggles. Employing consumers as staff can increase the sensitivity of non-consumer staff to their clients, educate co-workers, can help to locate hard-to-find individuals and to devise creative strategies to engage homeless persons who are resistant to services. Consumers as staff have also shown a special ability to sensitively relate to and help solve problems clients face, identify with client issues and offer coping strategies, and overcome obstacles with information and referral due to their personal experience receiving services and facing these obstacles.
But as Laura Van Tosh warns, “Consumer involvement carries with it certain risks and must be done in a thoughtful manner. When the involvement is implemented correctly, such involvement greatly enhances the quality of services the patients receive.” (Van Tosh, 1993). Any agency hiring consumer staff must be adequately prepared for the commitment of hiring consumer staff.
Newly hired consumer staff are faced immediately with three challenging issues: disclosure of consumer status, client-staff boundaries, and workplace discrimination (Fisk et al., in press). Due to the stigma associated with having been homeless, disclosure of consumer status to non-consumer staff and clients is an important issue for the consumer and his or her supervisor to discuss in advance. How does the consumer wish to be known? Does he or she want to disclose themselves or do they mind being identified by others. Disclosure must be carefully and creatively timed and will vary from one situation to the next. As a general rule, it is suggested that disclosure not happen until one has proven his or her ability to do the job.
Second, client-staff boundaries can be a source of stress for consumer staff especially if they are a former client with the agency. This change can be hard for non-consumer staff and clinicians as well. Other difficulties include having friends who are still clients, not feeling competent enough to do the job as a former client, and other clients wanting to develop a personal relationship with the consumer staff person. Lastly, and unfortunately, it can be quite common for disclosed consumer staff to face some sort of discrimination – whether overt or subtle. Non-consumer staff has been known to treat consumer staff differently, with less respect, than other co-workers.
In order to help the agency and consumer staff to overcome these complications, it is important that administrators actively support unit-based or agency-wide implementation of a number of concrete strategies for encouraging consumer employment. These are: (1) education and training of non-consumer staff, (2) increased individual supervision for consumer staff, and (3) paying special attention to the need to offer reasonable accommodation (ADA) or otherwise modify work responsibilities to meet the needs of consumer staff with disabilities (Fisk et al., under review).
While professional staff working in programs may have the ability to connect in a meaningful way with clients, they cannot replace the sense of “having been there” which consumer staff can provide. Especially for clients who have had negative experiences in the service system, many of whom have given up on getting help or are unable to trust, consumer/peer staff might mean the difference between getting off the streets and recovering or never getting off the streets and never recovering. In the homeless services industry, where so much effort is put into finding ways to reach people who are “help-resistant,” I wonder why there are not more consumer-operated and/or staffed street outreach programs.
Below are two examples of programs that employ consumers as staff.
Vita Nueva, a Shelter Plus Care housing program in Arizona, is a program of Compass Health Care, a large health care facility in Tucson, Arizona. In existence for more than five years, the program serves 44 women and men. The 22 women in the program are in early recovery from addiction and have dependent children. All the women work including a few women who are dually diagnosed. They pay 30% of their income to rent. Nora Stark, Program Coordinator, is a formerly homeless mental health consumer who has hired two former clients of Vita Nueva women’s program, one as Facility Manager, and another as a case manager. Residents meet about every six weeks to, as Stark explains, “go over the rules, regulations and expectations we have for them. If there is an item that is not working for them we discuss it and then vote on it.” Residents can vote to change such things as their own curfews, their children’s curfews, swimming pool hours, and the laundry room rotation schedule.
The McCormick Institute’s Center for Social Policy at the University of Massachusetts–Boston has a central computer server connecting shelters across the state to a common computer system. “So policies formulated from this information will be based on real people who have shared information about themselves with their case workers,” explains Donna Haig Friedman, Director of the Center. In setting up this system, privacy protection was a major issue. Consumers were engaged and paid to participate in setting up the privacy protections. They are also a part of the statewide steering committee. Consumers “advise us on privacy protections and have played a major role in developing our information security system,” states Friedman.
Consumer staff also plan and co-lead forums where case managers are trained in sensitive interviewing and in privacy protection. Recently, two consumer staff presented at a national conference on the role of consumers in data collection and analysis. The two consumers are writing a paper on consumer involvement in this project and one of them has developed a focus group module to inform and empower shelter residents.
In another research project at the Center, four of the researchers are woman with children who have been homeless. The study will survey families on the brink of homelessness to find out what it would take to prevent them from becoming homeless. “The women really knew what questions needed to be asked and how to sensitively ask them, due to their awareness of the particular realities of the families’ lives when in this situation,” states Friedman. “The consumers provided something very important to the project. They also put a human face on the numbers.” The Center does not pre-assign roles to consumers. “Each person is a very rich, complex person with lots of experiences. It is unfair to pigeon-hole them due to just one of these experiences.”
Consumer-run programs for homeless people offer consumers a sense of belonging and an opportunity for growth. Consumer-run programs are empowering, offering staff and participants a wealth of information and experience. These programs show participating consumers that they can function independently and with dignity. The empowerment aspect of these programs goes beyond the staff to the people served. Consumer-run programs often cost-effective and can provide an oversight or quality control function for the systems in which they operate (Van Tosh, 1988).
Because consumers have had personal experience in the service system—getting or trying to get services—when they put together their own service organization, they try hard to tailor the system to the client’s needs rather than the client’s needs to the system (Van Tosh, 1990). Flexibility is key. It might mean allowing consumers the dignity to make mistakes. Instead of telling clients “no” or “we can’t do that here,” consumer-run programs try to find creative ways to fulfill those needs.
In practice this might mean doing system advocacy, offering new types of services, or having to find specialized funding for something no one else offers. When Project OATS in Pennsylvania, a consumer-run organization, was finding it difficult to locate adequate housing resources for clients they decided to do some system advocacy. They organized a “sleepout” to encourage the state of Pennsylvania to develop more housing for people who are homeless and have mental illnesses. The “sleepout” and related activities helped secure $5 million for residential programs for homeless persons with serious mental illnesses in Pennsylvania. When Project OATS identified a need for training and employment for homeless persons, they raised additional funds for the new project, ACT NOW.
The key principles of consumer-operated organizations as follows (Mowbray, Chamberlain, Jennings, & Reed, 1984):
These principles show a great sensitivity to the issue of consumer control, an important issue for people who, while homeless, had no control over such basic decisions as where they were going to sleep, what they were going to eat, or when they could take a shower (Long, 1988). The following examples of consumer-run programs illustrate many of these principles.
National Union for the Homeless was founded in 1985 by three homeless men in Philadelphia, Pennsylvania. The organization was started as an organized response to a drop-in center that was not consumer-friendly. Through successful media coverage of the demonstration, the seeds for the National Union for the Homeless were sown. Following the demonstration, a Philadelphia clergyman offered them a facility to run their own shelter. With the support of a local provider who wrote a grant proposal for them, the group received $23,000 to operate the shelter. “The men vowed that this shelter would be different,” states Leona Smith, current President of the National Union for the Homeless. “What really set it apart was the fact that they focused on advocacy and social and political change.”
One of their first political victories was winning the right to vote for homeless people in Philadelphia in 1985. In 1986 they held their first national conference, where some 3,000 clergy, elected officials, homeless people, and unions came together to elect an executive director for the emerging organization. In 1989, they started the national “Housing Now” movement to challenge governments nation-wide to provide housing for homeless people. Out of this struggle, the Union founded several consumer-run housing programs. Three of these programs are currently operating: Dignity Housing West in Oakland, California; Up and Out Housing in Minneapolis, Minnesota; and Dignity Housing East in Philadelphia. All three programs offer housing opportunities, job opportunities, home ownership and life skills services. The Union is also involved in doing public education and has a professionally-produced video entitled “Take Over,” funded in part by Bruce Springstein and Michael Moore, that is shown every year on PBS television.
The PS Project in Parkersburg, West Virginia, started in 1994 as a consumer-run support group. “But from the very first meeting what kept being brought up was the lack of supportive housing.” explains Jackie Scott, Director of the program. The only options people had were groups homes where their whole life would be controlled or independent living with no supports. One and a half years later, the PS Project became a consumer-run residence for homeless persons with serious mental illness. The house, which can accommodate eight people, has no staff other than Scott who oversees the finances of the project and does not provide any mental health services. Ten hours per month of volunteer work is required of each resident to maintain the residence. Residents also help each other with daily living skills, plan community and other fun events, and encourage each other to prepare for independent living.
INCube. Another innovative idea that has arisen in response to the need for more consumer-run organizations is the creation of organizations whose goal is to help other consumer-run projects get off the ground. One such example is INCube, a not-for-profit agency in New York City whose purpose is to “incubate” consumer-run businesses and non-profit service organizations. Since its inception in 1988, INCube has assisted more than 80 consumer-run businesses to provide full or part-time employment for persons with serious mental illness. Several of these new projects are focused on homeless people, both families and single adults. With 14 paid staff and funding from the state and city departments of mental health as well as foundations, INCube is completely consumer-run.
One program supported by INCube is INCA Housing. INCA Housing is a consumer-run 50-unit scattered site housing program for homeless families and individuals in the Bronx. Run directly by consumers of mental health services, INCA’s highly trained managers assist clients with public benefits, finding and keeping housing, interfacing with treatment teams, and providing oversight to ensure quality of living for tenants. INCA also sponsors a community program to provide networking, linkage and employment opportunities through involvement in small enterprises such as a thrift shop and a catering business (Conrad, 1993).
Hands on the Homeless in Columbus, Ohio, is an all-volunteer, consumer-run, non-profit founded by a formerly homeless woman, Stacey Wright. The organization’s mission is to support people who are homeless by going into shelters to give self-esteem talks, help with job training and referral, and offer follow up once a family or individual leaves the shelter. “We are their best supporters because we have been there,” states Wright. “People tend to trust us and open up with us more than with the shelter staff.” The organization, founded in 1997, currently has 30 volunteers and offers support only to people who are receptive. Wright serves on a city-wide board for homeless providers which helps her learn about new ways for Hands on the Homeless to help. “The providers are very welcoming,” Wright adds. “Some come to us and ask us to give a speech or talk to someone.”
The Homeless Empowerment Advisory Project (HEAP) is a program run by homeless, or formerly homeless persons, with serious mental illness. Funded by the Massachusetts Department of Mental Health through a $20,000 grant, HEAP has been in existence for about six years and is affiliated with the Ruby Rogers Drop-In Center (see below). The project operates with one paid staff person and 10 stipend positions. Members make all decisions regarding activities and other projects of HEAP. Weekly advisory board meetings are held for members to discuss issues related to living in the shelters. HEAP sponsors a number of social and recreational activities for members and organized a consumer-run smoking cessation program. HEAP also has an arrangement with the Cambridge Adult Education Center where members can take courses at no charge.
Since 1985, the Ruby Rogers Drop-In Center in Somerville, MA, has provided a comfortable, safe and non-threatening place where Center members can find mutual support and advocacy for each other. Open seven days a week, the Center has approximately 200 members—nearly half of whom are homeless—and receives between 20 and 45 people each day. The Center offers a variety of social and educational opportunities for its members. There are currently three paid staff and 16 stipend positions. Workers will accompany members if they need support during a court appearance, a visit to the Social Security office or some other kind of support. The Center will also work with members to help them learn how to work while receiving Social Security benefits. All the rules and decision-making for the Center are made by the membership during weekly business meetings. The Center is funded through the Massachusetts Department of Mental Health and private donations.
Consumer-run organizations will face considerable barriers when blazing their way onto the human services scene. Many of these barriers are faced by all programs for homeless persons, but they may be made even more difficult due to public skepticism about the ability of consumers to operate programs. One of the most common difficulties is finding a location for consumer-run programs in the face of resistance and stigma from the surrounding community. Communities do not want those “crazies” or “bums” in their neighborhood. Unfortunately, the “not in my backyard” syndrome is still with us when it comes to people who are homeless. But when communities find out that former clients will be running the program as well, community resistance may grow even stronger.
In Parkersburg, West Virginia, the PS Project is faced with the fact that the local authorities do not want to fund the program (once the three-year demonstration grants end) simply because they are consumer-run. In Sacramento, California, the only drop-in center for homeless people was closed because of neighborhood pressure. In Portland, Maine, it took two years for the Portland Coalition to find handicapped accessible office space. From the perspective of the public, “it was bad enough that the program was for people who were mentally ill, but it was run by people who were mentally ill, too,” Director Dianne Cote has reported (Long, 1988).
While there has been a good deal of experience in siting residential programs for people who are mentally ill in communities, there is little experience in establishing consumer-run programs against local opposition. Although most programs build good relations with surrounding communities once they are established, discrimination based on fear continues to be a serious challenge to the ability of consumer-run programs to establish themselves (Long, 1988).
Other challenges consumer-run programs face include (Long, 1988):
Programs funded adequately on a demonstration basis, face little prospect of being renewed by the same funding source at the end of the period and they are left with no replacement source in sight. Moreover, due to a lack of information and technical support for these newly emerging programs, many are not adequately prepared to deal with how to access ongoing funding. Also, receipt of funds for some of these projects is often delayed while the payment voucher snakes its way through the bureaucracy. New programs, especially those that are consumer-run, are much less able to find ways to carry staff members, landlords and suppliers until the funds arrive.
The recommendations below are designed to increase the level of involvement by homeless and formerly homeless persons in policy, practice and research on homelessness. The recommendations are clustered around the four key themes found in the literature: (1) increasing consumer involvement on decision-making boards, (2) hiring consumers as staff, (3) funding consumer-run programs, and (4) providing technical assistance on how to involve consumers.
Increase Consumer Involvement on Decision-Making Boards
Broaden employment opportunities for persons who are or have been homeless at the local, state and federal level. This is especially important for homeless people with mental illness or substance abuse problems who have the greatest difficulty exiting homelessness and are most at-risk for becoming homeless again.
Provide Technical Assistance on How to Increase Consumer Involvement
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(1) For the purposes of this paper, “consumer” will mean any person who has experienced being homeless. For clarity’s sake, when I use “clients” I will be specifically talking about individuals receiving services from a particular organization, program or agency.
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