In the 35 years since homelessness emerged as a social issue requiring public attention and policy responses, it has become institutionalized in government and civil structures at all levels. So many federal agencies are affected by issues related to homelessness that an interagency council has been created to coordinate their efforts. Our largest cities have full-blown homeless services departments; many not-for-profit agencies are wholly or heavily funded by contracts to provide housing and services to people who are homeless; and a cadre of academics now specialize in homelessness research. Against this background, the new language of ending homelessness announces a disruption of business as usual and issues a challenge to decades of conventional wisdom. Among the new approaches commanding attention are those that claim prominent roles for people who have been homeless long the objects, but rarely the authors, of either research, policy, planning, or services developed to address homelessness or their own housing and service options.
This paper seeks to contribute to this Symposiums appraisal of knowledge about preventing and ending homelessness by addressing two questions: How are research, policy, and service delivery processes and outcomes changed when they involve or are driven by people who have themselves experienced homelessness? And what happens when people who are homeless make the decisions about the housing and services they need? Guided by these questions, we offer a synthesis and assessment of available information some of it in the fugitive or gray literature of reports, newsletters, conference handouts, and web postings; some in peer-reviewed and published research reporting on the involvement of people who are or were homeless in research, policy, planning, service delivery, and on consumer-driven, choice-based homeless services.
For the purposes of clarity in this paper, we use the term consumer to describe individuals who are currently or were formerly homeless. The term is controversial for several reasons, including its connotation that those experiencing homelessness can shop around for services among several available options as well as its links to an economic language of the marketplace. However, in the literature we review, it is the term most widely used to refer to people with current or past experiences of homelessness or those who have received system services. Other terms sometimes used instead of consumer in the mental health movement include psychiatrically disabled (Hensley, 2006) or survivor to indicate people who consider themselves disabled or who have survived psychiatric hospitalization or other trauma. However, these terms apply less broadly, since not all individuals impacted by homelessness have a history of psychiatric illness or hospitalizations or identify themselves as survivors of trauma. The term peer is currently used in the United States to identify people with a collective experience (for example, mental health and/or substance abuse recovery or homelessness) who are working and using their personal experiences and skills to assist others facing the same challenges. When reporting on programs that use the term peer in describing their staffing, we have retained this usage, but because we document participation by people who have experienced homelessness in research, policy, and planning, as well as in service delivery, the term consumer is a better fit than peer with the topic and intent of most parts of this paper.
Institutional and Policy Context
Decisions about and funding for research, policy, planning, and service delivery occur at national, state, and local levels, and are implemented in public, not-for-profit, and private organizational contexts. Several national-level government and advocacy organizations, notably the Interagency Council on Homelessness and the National Alliance to End Homelessness, have now adopted consumer-driven approaches as part of their push for 10-year plans to end homelessness, introducing choice-based housing and services in diverse locales. The National Association of State Mental Health Program Directors promotes state-level support for consumer self-determination of housing and services (NASMHPD, 2005).
Within federal departments that make policy and fund homelessness research, housing, and services, some agencies have strongly advocated consumer involvement. In the Department of Health and Human Services (HHS), the Substance Abuse and Mental Health Services Administration (SAMHSA), which supports homeless services for people with mental health and substance problems and evaluates innovative approaches, has played a leading role. The Health Resources and Services Administration (HRSA) has set high standards for consumer participation in governance of community health centers, though less stringent standards apply to HRSA-funded Health Care for the Homeless programs. At the National Institutes of Health (NIH), which fund most academic research on homelessness, consumer involvement has not been a priority. The Department of Housing and Urban Development (HUD) has endorsed consumer involvement in continuum-of-care (CoC) planning and in the implementation of Homeless Management Information Systems (HMIS). A HUD pilot program to develop consumer roles in HMIS led to a national training initiative on consumer involvement in HMIS implementation.
Changes Since 1998
In the last decade, a wave of initiatives and actions has involved consumers in research, policy, planning, and service delivery; given increased prominence to choice-based approaches to housing and services; and created a growing body of supporting research evidence. The current momentum of consumer-driven programs and expansion of consumer roles emerged in the context of broad social changes limiting the use of public resources to address poverty and homelessness. Activism driving consumer involvement arose from the consumer/survivor movement in mental health services and has carried over into homeless services and advocacy. Concerns about HIV/AIDS, managed care, and a shrinking safety net have also been energizing forces. Even under unlikely social conditions, consumers and their allies have found ways to advance a more consumer-centered agenda in homelessness policy and services.
The context for these developments is complex. Several broad social trends have converged in the last decade to force a reassessment of approaches to homelessness:
- Reduced public commitment to social spending has coincided with losses of affordable housing, growth of wealth and health disparities, escalating incarceration of minority and disabled individuals, and a failure to stem the growth of homelessness.
- Penetration of market principles and management technology into health care and public services has produced managed behavioral health care (Mechanic, 1999) as well as new attention by public agencies and providers to cost saving, outcomes-based management, and evidence-based practice (Nelson et al., 1995); at the same time, demands for personal responsibility on the part of vulnerable groups have increased (Bishop & Brodkey, 2006).
- Even as these processes reflect and promote reductions in social welfare spending, consumers have turned them into new openings for activism:
- Consumers have adopted and reframed calls for personal responsibility to emphasize individual choice, encouraging people to act as agents on their own behalf (National Mental Health Consumers Self-Help Clearing House, n.d.).
- The recovery paradigm in mental health, promoted by the consumer/survivor movement and its allies, is challenging old assumptions about capabilities of consumers and making recovery, self-determination, and choice defining principles (Anthony, 2000; Campbell, 2006a; Mueser et al., 2002).
- Recovery has entered the federal mental health agenda (New Freedom Commission, 2003; SAMHSA, 2005c; US Department of Veterans Affairs, 2005).
- Consumer-operated programs and choice-based program models (Campbell, 2006b; Teague et al., 2006; Tsemberis et al., 2003) are being developed, tested, and disseminated.
- Ten-year plans to end homelessness are expanding opportunities for consumer-focused and choice-based approaches.