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Housing has long been the single largest area of unmet need for people living with HIV/AIDS, and there are few published descriptions of programs that address this need. This paper describes Project New Hope in Los Angeles, California, a faith-based program that may be the nation’s first housing program exclusively designed for people with HIV/AIDS. We discuss why housing is important for HIV positive people; then we describe the project, including how it got started, how it operates, its linkage with the Episcopal Church, and its principal accomplishments and challenges; finally, we conclude with lessons learned that might be applied elsewhere.
Housing has long been the single largest area of unmet need for people living with HIV/AIDS (PLWH) in the United States (Aidala & Lee, 2000; Shubert & Bernstine, 2007). The Housing Opportunities for Persons with AIDS (HOPWA) program managed by the U.S. Department of Housing and Urban Development (HUD) provided nearly $182 million for HIV/AIDS housing assistance in fiscal year 2008 through its Formula Program, which allocates 90% of HOPWA funds to eligible states and cities based on a statutory formula that relies on AIDS statistics (cumulative AIDS cases and area incidence) from the Centers for Disease Control and Prevention (CDC). A total of 846 organizations or agencies were funded through the HOPWA Formula Program in fiscal year 2008, and of these 75% were secular, 15% were government, 10% were faith-based (U.S. Department of Housing and Urban Development, 2008).
Faith-based organizations (FBOs) often play important roles in addressing the social service needs of their communities, including housing. For example, the National Congregations Study (2006–2007) found that 82% of congregations engaged in social services or social ministries in formal or informal ways, and congregations most commonly served emergency needs for food, clothing, and shelter (Chaves & Anderson, 2008; Chaves, Anderson, & Byassee, 2009). FBOs, including congregations and their spin-off community development corporations as well as denominational non-profits organizations, also appear to have an emerging role in addressing more permanent housing needs through housing developments targeting the low-income housing market (Hula, Jackson-Elmoore, & Reese, 2008). Given the important role that many FBOs play in providing social services and housing, they could serve as important partners in addressing and/or advocating for the housing needs of PLWH.
However, little information is available in the literature that describes housing programs for PLWH or, specifically, that examines the role of FBOs in providing housing for PLWH. Although the literature on the relationship between housing instability of PLWH and negative health and social outcomes is fairly well-established (Burke, 2005; Pardasani, 2005), few articles describe housing programs for PLWH. Further, the relatively small but growing literature on FBOs and HIV has focused on HIV prevention (Agate et al., 2005; Baldwin et al., 2008; MacMaster et al., 2007; Marcus et al., 2004; Merz, 1997; Tyrell et al., 2008). We found only two brief descriptions in the literature about FBO efforts to provide housing specifically to PLWH, both concerning projects associated with Catholic hospital systems (Burke, 2005; Dunne, 2005).
This brief report adds to the literature by describing Project New Hope (PNH) in Los Angeles, California, a faith-based program that to our knowledge is the nation’s first housing program designed exclusively for people with HIV/AIDS. PNH is unusual in that it provides single site, new housing for PLWH and their families. Although this project provides an example of only one housing environment, the experience of the project can provide some lessons for other faith-based and/or community-based organizations that want to undertake a similar endeavor.
Housing instability and the need for housing services among persons living with HIV/AIDS have been consistently documented across various settings, samples, and time frames. For example, approximately one-third to one-half of persons with AIDS are homeless or in imminent danger of becoming so (Bonuck & Drucker, 1998). Similarly, about one third of participants in the nationally representative HIV Cost and Services Utilization Study (HCSUS) reported needing housing services, with 39 percent of those needing services unable to access them (Katz et al., 2000). Pooled data from the Community Health Advisory & Information Network (CHAIN) Project, an ongoing longitudinal study of PLWH in New York City, found that 70% of the sample reported one or more episodes of housing need during the study period (1994–2003; Aidala, Lee, Abramson, Messeri, & Siegler, 2007). And, as noted by Aidala and Lee (2000), housing services not only help people secure stable, adequate housing, but may also help those already housed keep their housing.
Homelessness and unstable housing are associated with a variety of health-related outcomes among PLWH. A systematic review of the literature identified a significant positive relationship between increased housing stability among PLWH and better medication adherence, improved utilization of health and social services, better health status, and reduced HIV risk behaviors (Leaver, Bargh, Dunn, & Hwang, 2007). A number of individual studies corroborate the findings for health care utilization and medication adherence among HIV-positive persons. For example, periods of homelessness among HIV-infected persons were associated with higher rates of emergency department utilization and hospitalizations, despite no difference in ambulatory care utilization and even after adjusting for addiction severity and depressive symptoms (Kim, Kertesz, Horton, Tibbetts, & Samet, 2006). Moreover, the unstably housed, including the doubled-up and homeless, were noted to receive less adequate health care, such as seeing a physician regularly, and may be more likely to experience adverse clinical outcomes than the stably housed (Smith et al., 2000). In another study, those who were homeless, unstably housed, or had other housing needs were less likely to have continuous medical care (Aidala et al., 2007). Lack of long-term housing and other unmet needs have also been associated with poorer adherence to antiretroviral therapy (Berg et al., 2004; Kidder, Wolitski, Campsmith, & Nakamura, 2007; Reif, Whetten, Lowe, & Ostermann, 2006).
Lack of adequate housing has also been shown to affect risk behaviors. For example, Aidala, Cross, Stall, Harre, & Sumartojo (2005) found that in a sample of HIV-positive individuals (N=1556), the odds of exchanging sex for money or needed goods and the odds of recent hard drug use were both nearly 4 times higher among the homeless and 2–3 times higher among the unstably housed as among the stably housed. Another large-scale study of PLWH (N = 8075) found that homeless PLWH (N =310) were more likely to have 2 or more sex partners in the past 12 months (OR=1.34) and to engage in sex exchange for money or drugs (OR=2.23 for “ever” and OR=2.07 for past 12 months) and in unprotected sex with an unknown status partner (OR=1.80) than housed PLWH (N = 7765), even after controlling for demographics, risk group, and alcohol and drug use (Kidder, Wolitski, Pals, & Campsmith, 2008).
PLWH often face tremendous discrimination when searching for decent, safe, and affordable housing, whether in public and private housing programs, or in purchasing or renting housing units. For example, in focus groups with persons living with HIV/AIDS, Bonuck and Drucker (1998) found that discrimination because of HIV seropositivity and experience with the criminal justice system or drugs posed formidable barriers to obtaining and maintaining housing. In addition, Brooks, Martin, Ortiz, & Veniegas (2004) found that although most unemployed PLWH (74%) were thinking of re-entering the workforce, a majority (66%) feared workplace discrimination. Such discrimination can make it difficult to obtain and/or keep a job, thereby further limiting housing options.
The literature is therefore clear on the importance of housing for PLWH, but, as noted by Aidala et al. (2005), providing housing for PLWH can be challenging and expensive. Nevertheless, such strategies are important to pursue because individuals benefiting from dedicated housing for PLWH are likely to experience improved health, mental health, and social support networks as a result of reduced stress, an increased ability to organize their medication routine, and emotional support from neighbors in similar circumstances (Smith & Pynoos, 2002). From a societal perspective, providing housing services for low-income PLWH may be cost beneficial as housing costs may be offset by savings realized by the health care system. Aidala et al. (2005) note that the costs to the healthcare system of ongoing HIV transmissions and HIV treatment failure are substantial. Furthermore, providing housing services may have synergistic effects on other aspects of people’s lives. For example, it is much easier to maintain employment if a person has stable housing, and it is easier to access medical services and adhere to medication regimens. Finally, psychological states may also be affected by housing status. People who are homeless or unstably housed often must focus on day-to-day survival, therefore competing needs make it difficult to deal with a chronic illness like HIV/AIDS (Cunningham et al., 1999). In contrast, having stable housing likely makes it easier to think about longer-term health and other concerns.
PNH is dedicated to serving PLWH and their families in Los Angles County and provides affordable housing or group living, as well as vocational services and opportunities. Founded in 1990, PNH is the first housing project in the country to focus exclusively on PLWH and still remains the largest operator of housing for people living with AIDS in Los Angeles. PNH is different from many other projects that provide scattered site housing to PLWH (e.g., apartment units within various buildings that house other types of individuals) because it provides single site housing, usually a building constructed for this purpose. The project began when the then Episcopal Bishop of Los Angeles, Frederick H. Borsch, started a formal ministry for PLWH. Lack of adequate housing and job loss were identified as primary concerns through a needs assessment.
PNH, as of July 2009, has 250 apartments in 11 residential buildings in different areas of Los Angeles with 600 total occupants. All buildings are fully accessible and, in all cases but one, were built for PNH with community input. PNH’s studio, one- and two-bedroom apartments are available for individuals and their families (including spouses, partners, parents, and children). Affordability is guaranteed, with the maximum rent being one-third of the family’s income. Individuals with HIV/AIDS are eligible if they and their families meet income criteria (<200% of federal poverty level), are at risk of being homeless, or are on Social Security Disability or Supplemental Security Income. Residents are referred to PNH facilities by local health care providers, AIDS service organizations and transitional housing providers. Currently, 51% of the residents are single parents, nearly half (43%) are Latino, and one-quarter each African American (26%) and Caucasian (24%).
PNH delivers a variety of services related to housing, employment, and health including mental health and substance abuse. It stresses opportunity, self-sufficiency, and dignity for low-income and homeless PLWH. PNH has incorporated licensed hospice facilities into their agency to serve residents who are not able to live in an independent residential setting because of health problems. Providing housing and service-intensive support is a key component to the continuum of care provided by PNH. The services are contracted through outreach health agencies such as Home Care Nursing and AIDS Healthcare Foundation, and are coordinated through case managers who oversee the care at each residential facility. Case managers are able to contact the respective health care providers on a 24-hour basis. There is also a link to the closest hospital for emergency services.
PNH uses an enhanced housing management approach, which incorporates service delivery and coordination into a traditional housing management model. Property management services are contracted out to agencies with proven ability to manage affordable housing operations, especially with special needs populations. All of the housing units have a bilingual resident services coordinator, most of whom are HIV positive. These coordinators are professionals who assist residents from the time of application during which they identify client service needs and coordinate with case managers and outside service providers as necessary. These coordinators maintain contact with all residents through individual meetings, community-building activities, and on-site groups sessions. They plan group activities with the residents including on-site social breakfasts, meetings, workshops, and parties, as well as visits to parks and museums.
Aside from providing housing to low-income HIV-positive people and their families, PNH also provides an array of training and employment services available at no charge to residents. Through a partnership, PNH provides the space for training while the Los Angeles Unified School District provides the teachers, and the California State Department of Rehabilitation provides the funding for services. These services include job placement, workshops that enhance skills in resume writing, interviewing skills, salary negotiation, conducting a successful job search, and employment preparation. Computer training and Smart Spending workshops that promote financial awareness and enhance money management skills are also provided. Vocational Service Coordinators are available on a weekly schedule to help interested residents develop individualized employment plans that set specific employment goals and identify steps for attaining them. Vocational Service Coordinators work closely with residents and their Resident Service Coordinators to monitor the resident’s progress in their individualized program.
PNH is funded by a mix of public and private sources, with initial funding through HUD and additional funding through the HOPWA Program, the Los Angeles Community Redevelopment Agency, various banks (through no-interest loans), tax credits, and individual contributions, and various fundraising activities. With an annual operating budget of $3.2 million, PNH currently has staff serving a variety of roles: founder and secretary of the board, an executive director, two supervisory case managers (one for the Homestead Hospice Care facilities and another for the other residential facilities), five in-house case managers, 11 residence managers on-site in PNH facilities, two licensed clinical social workers, a development person, three clerical staff members and three accounting staff members.
The linkage with the Episcopal Diocese of Los Angeles has been central to the initiation, success, and sustainability of Project New Hope. The Diocesan Bishop and his staff have provided support in many ways, such as helping to reach out to other community organizations and leaders and key politicians in each of the communities where PNH has developed supportive housing facilities. The Diocese has helped facilitate the necessary funding, land, and community and political support to carry out the projects by helping to get to know the community base, providing connections to congregations in the selected communities, and working with the political leadership to attain goals.
For example, for one of PNH’s projects, the Diocese donated its own land to PNH and for two other projects, the Diocese worked with elected government officials who helped obtain the lowest cost for land which was necessary to complete this housing project. The Episcopal Diocese of Los Angeles also continues to support the project financially by paying for a staff position and providing an office for the project. In addition, the Diocese has periodically provided financial support to PNH through no-cost loans when there are funding shortages and through on-going human resources such as a communications expert who helps PNH with its communications and outreach strategies.
PNH is part of a broader Bishop’s Commission on HIV/AIDS Ministries of the Episcopal Diocese of Los Angeles. The Commission has focused its efforts on outreach within the Episcopal Church and to the broader community. Specifically, efforts have been on building social support and services to individuals and families living with HIV/AIDS, education efforts for Episcopal youth and minority communities, and spiritual and social support for those within the Church who work in the ministry. The Commission has worked to bring together a number of diocesan commissions such as HIV/AIDS Ministries, and Peace & Justice Ministries for joint outreach to the diocesan community. The Commission continues its relationship with PNH as part of the HIV/AIDS Ministries in the Episcopal Diocese of Los Angeles.
The overall work of the Commission is critical to the success of PNH. For example, the Commission works to organize more clergy and lay leaders to be sensitive to the needs of PLWH and their families and develop ways to support them, thus facilitating a strong volunteer base for PNH. Moreover, its broader education about HIV/AIDS, conducted at the parish-level and through diocesan-level workshops, can also help decrease the stigma of HIV/AIDS. These combine to create a more supportive environment in the broader community for one of the principal tasks of PNH, that of developing dedicated housing for individuals and their families living with HIV/AIDS.
The role of clergy and lay leaders is important to carrying out PNH. Spiritual direction and pastoral care by religious leaders of all faiths are available to the housing residents upon request. PNH maintains strong connections with religious leaders in each community where it works in order to maintain this pastoral care network. Lay volunteers, who as of July 2009 number 120, also play an important role in PNH’s work. Volunteers come not only from Episcopal congregations but also from congregations of other denominations and faiths. Volunteers serve on building advisory boards, collect donated goods such as clothing and food, and provide transportation to health care appointments when needed. Individual parishes in the communities where PNH buildings are located often take a special role, for example organizing holiday parties for residents. The volunteers receive training through quarterly workshops to educate and sensitize them to the needs of the residents. Most of the volunteers tend to be middle-aged or older and already know a fair amount about HIV because of having had a family member or close friend who had or has HIV/AIDS. Many are parents of people with AIDS or are gay. Volunteers generally donate five to eight hours a month and are supervised by several volunteer coordinators, themselves volunteers, who work under the founding director. Each volunteer must possess a valid driver’s license and is covered by insurance through PNH.
The faith-based aspect of PNH and the associated linkages with and through the Episcopal Diocese have been key to initiating the project, mobilizing resources, and sustaining it over time. PNH demonstrates a concrete way that FBOs can be involved in addressing HIV/AIDS in their communities, beyond the sometimes very controversial role in HIV prevention and the less controversial yet much less examined role in providing pastoral care and social support to PLWH. PNH’s major accomplishment is providing permanent housing and offering employment training services to 600 residents who are currently living with or affected by HIV/AIDS. For its unique work, PNH has received awards as the Best Non-profit Property (1995, Enterprise Foundation) and Developer of the Year (1999, Southern California Association for Non-Profit Housing).
PNH has faced, and continues to face, numerous challenges. Some of these challenges have to do with housing construction, some with the on-going challenges faced by residents, and still others with the long-term sustainability of the project.
In terms of housing construction, there is often strong resistance from community members, who may endorse the overall goals of PNH but are negative about the agency’s location. This resistance appears to stem mostly from homeowners’ fear that establishment of such housing will have negative effects on property values, certainly a fear that other low-income housing projects face. However, the stigma surrounding HIV/AIDS compounds that fear, creating formidable obstacles. Over time, these challenges have diminished, as community residents see the new, well-maintained buildings that have remained fully occupied and actually have boosted property values.
But beyond community resistance, there are the more practical challenges related to housing construction, such as obtaining the land and financing the construction. PNH has found it necessary to invest a fair amount of time and resources into getting to know the community where it wants to launch a project, including politicians and other decision-makers, and finding architects and contractors who are willing to accept lower profit margins. Further, when local and state governments that have made funding commitments to PNH have themselves faced funding delays, they have borrowed the money from banks and charged the interest to PNH.
A second set of challenges has to do with the on-going struggles of residents. For example, although PNH provides training and job placement services to help individuals acquire new job skills and foster a successful transition into the workforce, many residents fear a return to work because of being discriminated against and others fear losing their current public benefits. Other anxieties include the high cost of antiretroviral therapy because HIV-positive individuals often lack health insurance.
A third set of challenges has to do with sustaining the project and continuing to meet demand. For example, some PNH facilities have long waiting lists of 50–80 applicants because of relatively low turnover rates of 7% per year. HIV is now a chronic condition, so the need for long term housing is greater. Also, the project has found it necessary to constantly monitor the federal government’s policies, since funding availability and eligibility have changed drastically over the years. For example, HUD, the federal agency that initially provided the bulk of funding for PNH, is now focusing less on HIV/AIDS and more on senior and other low-income housing.
The process of developing housing for PLWH can be lengthy and challenging. We summarize in Table 1 the steps taken by PNH to develop HIV/AIDS housing in each community where it has worked. The steps outlined include only those required before opening the facilities, and not those related to developing the enhanced management model described above. Furthermore, the steps and the approaches taken to meet them are not mutually exclusive as there can be a fair amount of overlap. The whole process, from obtaining the promissory money to selecting the residents via lottery, can take anywhere from 3 to 7 years to complete. Much depends on the particular community in terms of the availability of suitable land and the receptivity of religious, business, and political leaders, as well as residents. However, PNH has found that this process can produce success in a variety of communities, as long as one is willing to invest in the necessary relationship-building.
In terms of community resistance or opinion, PNH has found that their strong connection to the Episcopal Diocese and strong support from the Bishop have helped facilitate relationships with key community stakeholders. For example, each project was targeted in a community where there was at least one Episcopal parish that would get involved in the project, leveraged relationships with congregations of other denominations and faiths (e.g., Methodist, Lutheran, and Jewish), and called upon elected government representatives to help secure the land at low cost for this purpose. PNH found architects through local Episcopal parishes that were willing to provide their services at lower cost and these architects in turn found contractors with whom they had already had a professional relationship. PNH’s relationship with the Diocese’s afforded the project legitimacy and access to banks with community development and benefit funds to obtain low-interest loans. The strong connection to the Diocese has therefore enabled PNH to develop a broad set of collaborators, reflecting the importance of partnerships and coalition-building for improving community health (Roussos & Fawcett, 2000). Working across housing, health, and social work boundaries can be particularly challenging, but a collaborative approach that seeks to bridge these boundaries can effective in addressing the complex needs of people with HIV (Cameron, Lloyd, Turner, & Macdonald, 2009).
Although some have suggested that building housing for exclusive use by HIV-positive individuals contributes to a “ghettoization of those with AIDS” (Stajduhar & Lindsey, 1999), PNH’s experience is that co-location fosters a strong social support network for PLWH, as found by Smith and Pynoos (2002). PNH residents support one another and also receive support from resident services coordinators and other community members, especially from FBOs. For example, if a resident is not seen for a few days, the resident services coordinator or another resident will knock on the door to see how the resident is doing. Social workers are alerted if it appears their intervention is needed.
Finally, PNH has found that creating mixed use housing, but with the same supportive environment for PLWH, helps the agency adapt to the changing funding environment. For example, PNH recently completed a $3.8 million senior housing project funded by HUD and HOPWA funds that allocates 14 of 64 units for PLWH (who can be of any age). Most of the seniors who live there do not have HIV/AIDS, are gay, and are very committed to addressing the needs of PLWH. For example, seniors often provide transportation, childcare, and other assistance to PLWH. Such conditions provide a very supportive environment for the PLWH who live in the building, facilitating natural helping networks.
The challenge to HIV researchers is to move beyond merely documenting the negative effects of unmet needs such as housing, to actually developing and evaluating real-world, concrete solutions to meeting these needs. Our descriptive paper documents one model, PNH. However, to obtain broader support for such programs, evaluations and in particular cost-benefit analyses, are needed. One model for such analysis is Kim et al. (2006), whose evaluations of housing for severely mentally ill homeless persons demonstrated costs can be offset by savings realized by reduced hospital and jail stays however, until recently there were no comparable studies of HIV positive persons. One exception is an initial cost analysis that suggests housing intervention will be cost-saving if just one of every 19 Housing & Health intervention clients avoids HIV transmission to an HIV sero-negative partner and cost-effective if it prevents just one HIV transmission for every 64 clients served (Holtgrave et al., 2007). Expanding these goals is a randomized controlled trial in three cities (Baltimore, Chicago, Los Angeles), the Housing and Health study, which will assess the effects of providing rental housing assistance on PLWH in terms of HIV disease progression, medical care access and utilization, treatment adherence, mental and physical health, and risks of transmitting HIV (Kidder et al., 2007).
The Housing and Health study just mentioned and PNH are both examples of programs that provide PLWH “deep” subsidies for housing, that is, ones that reduce the recipient’s housing expenses to a level deemed acceptable by the federal government (usually one-third of the family’s income). Such programs can cost over $9000 per client per year in places like Los Angeles, with additional costs for services such as case management (Holtgrave et al., 2007). Another type of program being tested with PLWH is that of a “shallow” rent subsidy, where the program provides a defined payment regardless of the subsidized household’s income. An example is Project Independence (PI) in Alameda County, which found that even with moderate levels of subsidies, averaging $2700 per year, PI participants were much more likely to remain independently and stably housed than the comparison group (Dasinger & Speiglman, 2007). Certainly more studies are needed that test creative strategies for providing stable housing for PLWH across a range of funding levels.
The potential synergistic effects of providing housing for PLWH and the need to include these when assessing the cost-benefit of providing housing services need to be noted. Federal policies and funding streams that recognize the bundling of services (e.g., housing, health care including mental health, and substance abuse treatment) are needed to truly improve clinical and social outcomes among this population. Projects such as PNH strongly suggest that while challenges are formidable, results prove to be remarkable for many of those at risk of homelessness who are living with HIV/AIDS.
Preparation of this manuscript was supported in part by Grant Number 1 R01 HD50150 from the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of NICHD. Project New Hope (PNH) would also like to acknowledge the following people whose contributions to the overall concept of PNH have been seminal and/or sustaining: The Right Reverend J. Jon Bruno of the Episcopal Diocese of Los Angeles, for his continued support of PNH and his tireless compassion for people living with HIV/AIDS; Ms. Ruth Schwartz of Shelter Partnership, Inc. and Ms. JoAnne Yokota of Beyond Shelter Housing Development Corporation, for advising and guiding PNH’s founder Jack Plimpton through the process needed to implement the project’s vision and make it viable.
Kathryn Pitkin Derose, RAND Corporation, Santa Monica, CA.
Blanca X. Domínguez, RAND Corporation, Santa Monica, CA.
Jack H. Plimpton, HIV/AIDS Ministries, Hands in Healing Jubilee Center, Los Angeles, CA.
David E. Kanouse, RAND Corporation, Santa Monica, CA.