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Community-Based Participatory Research in Disability and Long-Term Care Policy: A Case Study

September 19, 2008

By Minkler, Meredith Hammel, Joy; Gill, Carol J; Magasi, Susan; Vasquez, Victoria Breckwich; Bristo, Marca; Coleman, Diane

From 1997 to 2003, Illinois was spending approximately 80% of its long-term care budget on nursing homes and institutional care and was facing significant challenges to its long-term care delivery and the need to rebalance toward community-based supports for people with disabilities. A case-based program evaluation was done to analyze Moving Out of the Nursing Home to the Community, a community- based participatory research (CBPR) project. The Chicago-based project documented the experiences and concerns of 200 disabled people attempting to transition out of nursing homes to least restrictive community living, actively involving participants in an empowerment and systems and policy change program. The authors describe the partnership between the University of Illinois at Chicago and two centers for independent living; the project’s research, policy-related goals, and activities; and the outcomes realized. Barriers and facilitating factors to long-term care systems change are described, as are implications for other CBPR partnerships focused on disability public policy. Keywords: community-based participatory research; disability policy; long- term care policy; community living; nursing homes; community integration; community participation

When the Supreme Court issued the Olmstead v. L.C. decision in July of 1999, it challenged states to provide services to people with disabilities “in the most integrated setting appropriate” to their needs (Olmstead v. L.C., 1999). Although many states have moved away from institutionalization and toward community-based supports, a number of states, including Illinois, have only begun the systems change needed to rebalance long-term care to offer real choice and access to community living with supports. The number of people with disabilities who are younger than 60 and living in Illinois nursing homes has increased rather than decreased, growing by 25% from 1997 (9,893) to 2003 (13,179; Illinois Department of Public Health, 2005). Approximately 80% of the state’s long-term care funding is spent on nursing homes and other institutional care (MEDSTAT, 2005). As a result, the disability activism group ADAPT (2004) has rated Illinois 1 of the 10 worst states for community services.

The increasing number of people with disabilities in Illinois nursing homes, the difficulties of moving back into the community once institutionalized, and the social barriers experienced by disabled people who have moved out of nursing homes were key factors giving rise to the community-based participatory research (CBPR) project described in this article. The project, titled Moving Out of the Nursing Home and to the Community, involved a partnership between the University of Illinois at Chicago and two large centers for independent living (CILs): Access Living, in Chicago, and the Progress Center for Independent Living, which serves the rest of Cook County.

With funding from the National Institute of Disability and Rehabilitation Research, Moving Out of the Nursing Home was designed to document the experiences and concerns of disabled people1 who were attempting to move out of nursing homes and to develop, implement, and evaluate an individual and community empowerment and policy change intervention known as the Social Action Group (SAG) program. Grounded in an empowerment model stressing community capacity building (Charlton, 1998; Freire, 1970; Zimmerman, 2000), the 5-week SAG program helped participants gain information and develop strategies for community living through a peer-mentoring, social-learning approach while they developed advocacy skills and techniques and participated in activism to effect policy change at the local, state, and national levels. In this case study, we focus in particular on the policy advocacy and communitybuilding components of the broader SAG program effort.

From its inception, Moving Out of the Nursing Home adhered to the principles inherent in a CBPR approach. Such research is participatory and cooperative; emphasizes colearning, systems development, and local community capacity building; is an empowering process through which participants can increase control over their lives; and attempts to balance research and action (Israel, Schulz, Parker, & Becker, 1998). After briefly reviewing the case study methods employed in our exploration of this Chicago-based project, we describe its genesis and evolution, its goals and research methods, and the ways in which community and academic partners worked collaboratively to promote policy change. The project’s perceived contributions to several policy changes are discussed, as are the difficulties inherent in teasing apart its specific contributions given the array of contextual and other factors at play in the policy-making process. Barriers faced and factors facilitating partnership success are discussed, as are implications for other CBPR partnership efforts focused on disability-related policy change.

Case Study Methods

Moving Out of the Nursing Home was 1 of 10 CBPR projects selected for inclusion in a W. K. Kellogg Foundation-funded effort to study and document the impacts of CBPR on health-promoting public policy (see Minkler, Breckwich Vasquez, Tajik, & Petersen, 2008, for a discussion of the larger study). Using Yin’s (2003) multimethod case study approach, data on the Chicagobased project were collected principally though a site visit conducted in May 2004. In-depth interviews were conducted with six academic and community partners concerning the partnership’s genesis and evolution, its research methods and outcomes, and its efforts to have an impact on policy. As one means of better understanding the policy-focused aspects of the partnership’s work, academic and community partners were each shown a list of steps that are common across several key frameworks used to examine steps and stages in the policy-making process, for example, defining the problem, setting the agenda, constructing policy alternatives, deciding on a policy to pursue, and implementing and evaluating the policy (Bardach, 2000). They then were asked whether and how their partnership addressed each step. A focus group with 11 participants in the project’s SAG program intervention also was conducted, as was participant observation of a town hall meeting and the collection and review of reports, mass media accounts, and other written records. Finally, follow-up interviews with two relevant policy makers were undertaken to elicit their feedback particularly concerning their perceptions of whether and how the project may have contributed to policy change.

Audiotapes of the interviews and focus group were transcribed and coded by two research team members to identify key domains (e.g., partnership development, policy steps, and attribution of contribution). The qualitative software package ATLAS.ti then was used to group all key domains for this site, and reports were generated for key domains. Members of the research team independently identified key themes and codes using these reports and then compared and reconciled their findings. A detailed case report based on the findings was shared with partners for member checking to help ensure the accuracy of data interpretation. In keeping with principles of CBPR that stress partnership equality (Israel et al., 1998; Minkler & Wallerstein, 2008), both community and academic partners were invited to serve as coauthors on this article.

Project and Partnership Background and Evolution

Moving Out of the Nursing Home was born in 2000 from a long-term partnership between two professors in disability studies at the University of Illinois and their community partners at two local CILs, Access Living and Progress Center, which were founded by and are operated for and by disabled people. Consistent with CBPR’s emphasis on beginning with a community-identified issue (Israel et al., 1998; Minkler & Wallerstein, 2008), the topic grew out of dialogue between the disability rights community and academic partners who shared deep concerns about the number of disabled people in nursing homes in Illinois and the difficulties they experienced in leaving these settings and reintegrating into the community. The idea of focusing the study in a way that would help build community and try to effect policy change at the same time was described by an academic partner as “almost a mandate” from the CILs.

The project’s goals were threefold. First, it aimed to document the experiences, concerns, and goals of people with disabilities who were attempting to move out of nursing homes and into the community. Second, the project was designed to develop, implement, and test an intervention-the SAG program-that would support disabled people making this transition, through peer-led education about their rights under the Americans with Disabilities Act (ADA) and the Olmstead decision and by helping them access resources and supports for community living. The SAG program built directly on existing efforts by the two CIL partners to provide peer-based case management through their Medicaid-sponsored Illinois/Medicaid Home- and Community-Based Services Community Reintegration waiver program, specifically to provide support to disabled people wishing to transition out of nursing homes (Access Living, 2003; Progress Center for Independent Living, 2003). Finally, and of particular concern to this case study analysis, a third project goal was to encourage participants to apply the knowledge gained through participation in the SAG program in concrete efforts to help bring about policy change promoting community reintegration and local- and state-level compliance with mandates and legislation supporting such reintegration.

Following a brief review of Moving Out of the Nursing Home’s research methods and individual-level findings, we will look in more detail at the project’s policy steps and activities as well as the policy-related outcomes to which it appeared to have contributed.

Research Methods

Moving Out of the Nursing Home included four key research components. A series of three initial focus groups was conducted with 30 disabled people who were at different points in their community reintegration processes. The first group was composed of people still in nursing homes, the second of people in the process of transitioning out, and the third of people who had left nursing homes and had been living in the community for at least 6 months. Focus group members identified the barriers and supports to moving out of the nursing home, the need for information about their rights, and their recommendations for supporting people during this process. Both these and subsequent focus groups were cofacilitated by an academic researcher and a community partner with a disability. Each focus group was captioned both as an accommodation and to provide verbatim transcripts that were then analyzed using an iterative comparative coding process that included member checking by community partners. Findings from the focus groups then were used to inform the creation of the SAG program intervention. The SAG thus included a variety of activities that would support participants in (a) accessing resources and information on community living rights, housing, transportation, and community supports; (b) developing advocacy networks and becoming a part of collective activism to change policies; (c) building strong support networks to facilitate life in the community and reduce the risk of returning to a nursing home; and (d) building consciousness about disability community identity, pride, and culture. The 5-week SAG program intervention was grounded in a sociallearning approach through which people with disabilities who were living in nursing homes, their community- based peers (many of whom had previously been institutionalized), disability activists, and academic partners in disability studies learned from and mentored each other in areas that included disability rights advocacy, community living strategies, social networking and support, community building, and CBPR.

The SAG intervention model was field tested through a controlled intervention trial with 140 people randomly selected from the list of individuals involved in the community reintegration waiver program. Of these, 70 people received the SAG intervention, and 70 constituted a wait-list control group whose members were invited to participate in town hall meetings and other program activities following the trial. Participants in the intervention were provided honorariums, accommodations, transportation, and food to attend and actively participate in all activities, support that is critical for disabled people, particularly those in Medicaid nursing homes for whom participation would otherwise often not be possible.

The project enrolled a diverse, cross-disability sample, including people with physical, psychiatric, cognitive, sensory, and multiple impairments. Many also had coexisting medical problems such as diabetes and respiratory and cardiovascular conditions. The median length of nursing home residence for sample members was 2.5 years, with a range from 4 months to 20 years. Changes in community living status, choice and control over living situation, community participation, social relationships and networks, quality of life, and perceptions of individual and collective power and disability identity were among the outcomes examined through both quantitative and quantitative measures. An interview schedule, containing close to 300 items, was administered to the 140 participants and took approximately 2 hours to complete. Repeated measures were used at baseline and at 3 months and 12 months postintervention with validated instruments including the Duke Multifunctional Assessment for assessing health, function, and social participation; the Flanagan Quality of Life Scale; the Disability Identity Scale; and the IsraeUZimmerman Empowerment Scale (see Hammel et al., 2008 [manuscript under preparation], for details). The use of repeated measures multivariate analysis enabled the researchers to compare outcomes, such as perceived control over one’s living situation, in the intervention and control groups. Participants also were asked to set their own empowerment goals, and they rated their satisfaction with progress toward achieving these goals over time.

Qualitative interviews and life narratives were used to gather additional data about the processes participants were going through during this important life transition and to add meaning, voice, and depth to the findings in the words of the disabled people themselves (Hammel et al., 2008 [manuscript under preparation]).

A final component of the project’s research methods with particular relevance to this article included 10 follow-up focus groups and six town hall meetings that were conducted during and after the intervention to enable participants to “tell their stories,” to help evaluate the SAG program, and to afford the researchers an opportunity to share preliminary qualitative and quantitative findings and receive feedback from participants about the accuracy of their interpretations. Consistent with CBPR’s emphasis on action based on critical reflection as an integral part of the research process itself (Gaventa, 1993; Minkler & Wallerstein, 2008), these focus group and town hall meetings also provided critical opportunities to use study findings to develop action plans, including the community’s next steps in working to effect policy change.

Individual-Level Findings

Because this article focuses primarily on the policyrelated outcomes of the project, we will not describe in detail the individual-level outcomes of the SAG program intervention (please see Hammel et al., 2008 [manuscript under preparation], for a comprehensive look at these study findings). Briefly, however, at the end of the project period, 37% of the participants in the SAG intervention had successfully transitioned out of nursing homes to the community, compared to 20% in the control group. Results also showed that living environment (i.e., whether people remained in nursing homes or transitioned to community living) was the most significant predicator of key outcomes related to increased choice and control over living situation, social support, and networking and to quality of life at 3 months and 12 months postintervention.

Interestingly however, participants in the treatment group also expressed significantly higher dissatisfaction following their participation in the SAG program in ratings of quality of life, including financial and economic status, access to housing, and aspects of social relationships. Community partners interpreted this as a positive outcome, indicating that consciousness may have been raised about the oppression disabled people face, such as economic barriers to living in a city such as Chicago with high rents and long-term care policies that largely fail to subsidize rental costs. Furthermore, being dissatisfied was seen as a positive step in potentially motivating participants to work for policy and other changes to address these lived inequities, rather than simply internalizing the problem as being due to some personal deficit. Such a move, referred to as “conscientization” by Freire (1970) and “empowered consciousness” by Charlton (1998), is critical to social action change and also to community consciousness.

People who were transitioning out of nursing homes (who often spoke of themselves as nursing home “survivors” or “escapees”) also talked about new sense of community and about increasing personal feelings of power and control as a result of their participation in the project. As one stated, “A researcher asked us about the definition of disability. At first we talked about personal limits but now we talk about the power of voice.” Similarly, an academic partner commented that one of the things the project “does very well” is to “challenge some of the internalized negative views they have about needing to be functionally perfect in order to deserve to be in the [community].” Increasing sense of community and perceived individual and community empowerment, in short, were both processes and outcomes of the project and, as noted below, laid important groundwork for subsequent efforts to help effect policy and other systems changes.

As suggested above, another goal of the project, and the one of greatest relevance for this article, involved the SAG intervention program’s emphasis on supporting participants as they developed skills as advocates effecting policy-level changes that could help address the institutional bias in long-term care funding and availability. Redressing this imbalance was a major goal of the Bush administration’s New Freedom Initiative and the Centers for Medicare & Medicaid Services (CMS) systems change grants, which, as noted below, proved an important mechanism for the partnership and the SAG group’s efforts to try to effect policy change. We turn now to a look at the policy steps and activities undertaken by the partnership and the SAG participants and at the policy-level changes to which some of these activities appeared to have contributed. Policy Steps and Their Implementation

As Milio (1998) points out, policy making proceeds nonlinearly and is embedded within changing sociohistorical contexts. Yet a number of policy steps and activities nonetheless shape the content, course, pace, and development of policy. As noted above, traditional steps or stages in the policy process include identifying or defining the problem; setting the policy agenda; and increasing awareness, constructing policy alternatives, deciding on a policy to pursue, and implementing and evaluating the policy (Bardach, 2000). We now use these steps to discuss the partnership’s efforts in each of these areas.

Defining the problem. Kingdon (1995) has argued that situations become identified as problems “when we come to believe that we should do something about them.” In this case study, as noted earlier, problem identification grew out of conversations between the community and academic partners and reflected their joint concerns about the growing number of disabled people living in nursing homes and the difficulties they experienced in leaving these settings and becoming reintegrated into the community. Within this overarching problem area, initial focus groups with 30 current and recent nursing home residents further helped identify more specific policy-relevant objectives, for example, mandating that policy makers coordinate efforts, because at that time, two areas vital to getting out of the nursing home-Medicaid waivers and rental assistance-were governed by different policy makers and very different regulations. For example, people who wanted to leave nursing homes could get transitional support in the form of furniture and start-up costs but not to pay for rent. Yet disabled people in Chicago on subsidized incomes were receiving an average $564 per month at that time (Social security Administration, 2004), far below the basic cost-of-living standard (more than $1,500 per month) for even the lowest cost areas. Furthermore, nursing home residents faced barriers to just getting transportation to visit potential community living apartments, as this was not considered “medically necessary.” Through these and other examples offered during the initial focus groups, SAG members helped further refine the problem, casting in stark relief how existing policies mitigated against moving out of nursing homes and being able to stay in community living settings once residents had made the transition.

Agenda setting and creating awareness. The Olmstead decision, together with growing publicity around Illinois’s poor ranking with respect to the funding ratio for community-based supports and options for disabled people, helped put this issue on the policy radar screen in the state. The “80:20″ slogan (referring to the fact that 80% of Illinois long-term care monies went to institution- based long-term care and 20% to communitybased supports) and the CIL partners’ leadership role in helping to publicize Illinois’s poor standing with regard to funding community-based alternatives further helped create awareness of the need for shifting the balance in long- term care funding toward community-based options. Media advocacy was also used by the partners early and often to create awareness of the problem and of potential policy solutions (Bristo & Naiditch, 2004; Cohen & Facchini, 2005; Tsouderos, 2005; Yednak, 2005). At the same time, and beginning soon after its inception, SAG facilitated a process through which disabled people could tell their personal stories both in written form and in town hall meetings and public hearings, which helped further create awareness and bring needed public and policy maker attention to this issue. Attendance at these forums of stakeholders, including the director of the state’s Office of Rehabilitation Services, as well as other high-ranking administrative officials in government departments such as aging and developmental disabilities, was particularly important in fostering awareness and creating an environment of accountability to the community.

Constructing policy alternatives. To help construct a range of possible alternative policy directions, an academic partner described how she would collect policyrelated information from key sources within and outside the state, finding out, for example, how activists and policy makers in other states had gone about getting a particular policy change. Much strategizing by the community and academic partners took place concerning the pros and cons of different possible policy directions. Data from the initial focus groups, and the ongoing SAG intervention trial, were utilized during these discussions, and potential policy solutions for problems were identified based on the direct input of disabled participants (e.g., providing emergency back-up attendant care to disabled people who may otherwise be forced to return to nursing homes).

Although frequent communication and negotiation with state policy makers occurred in the process of considering policy alternatives, at other times the partnership’s priorities were not open to such negotiation, and local and national strategic community alliances were developed with national disability organizations to move the policy objectives forward.

Deciding on the policy (or policies) to pursue. Moving Out of the Nursing Home proved an unusual project from a policy advocacy perspective, for rather than focusing on a particular policy, the partners tried to increase awareness of the need for, and to promote, a whole variety of policy and other systems changes related to community living and long-term care policy reform. Furthermore, in view of the complexities of both Medicaid and Olmstead, efforts were made to address policy and systems change on multiple levels and across a range of community living contexts.

Among the specific policy objectives decided on, for example, were a Money Follows the Person program for consumer-directed support services; emergency back-up personal attendant services for people at risk of reinstitutionalization without such support; and a community reintegration program for people older than 60 who wanted to move from nursing homes back to the community and who often faced major barriers in doing so. Finally, the project’s academic and CIL partners, together with SAG participants, were committed to the goal of continued funding of the state’s CIL community reintegration waiver program-a particularly challenging policy objective given the context of Medicaid budget cuts being made at this time, coupled with pressure from nursing home lobbyists to maintain or increase funding for skilled nursing facilities.

Policy-Related Activities

In discussing the specific policy advocacy activities they undertook to help address the above policy needs, academic and community partners as well as SAG group members reported testifying, contacting officials, writing letters to the editor, and taking part in rallies and demonstrations to create more public and policy maker awareness of and support for their positions. Effective use of mass media, especially by the CIL partners, also was identified by several key informants interviewed and was illustrated in newspaper articles and op-ed pieces in venues including the Chicago Tribune (cf. Hanney, 2004; Tsouderos, 2005) in which community and/or academic partners were quoted and in one case served as coauthors (Bristo & Naiditch, 2004). Several SAG participants also told their stories on National Public Radio (NPR) programs in 2004 and 2005 and made the case for the critical need to rebalance finances toward community living options. They also spoke of the need to hold states accountable for enforcement of the ADA and for ensuing implementation of the CMS mandate to further rebalance long-term care support to promote more community-based care.

The building of strong coalitions beyond the existing partnership also was identified as a key policy-related activity. Partnership members were founding members of the Illinois Olmstead Coalition, for example, which began in 2003 and whose activities continue to be posted on Access Living’s Web site (http://www.accessliving.org).

As noted above, of particular importance to this project were the participation and firsthand testimonies of disabled people who were currently living in nursing homes or who recently had transitioned out with the support of the SAG program. These program participants received training in advocacy strategies, and many testified about their experiences. An academic partner underscored how critical it was to have these men and women be “front and center” in the testifying, noting that although she and others could and did provide needed facts and figures, the academics’ role was more one of being “the legitimizing footnote” to the more powerful personal information shared by those who had lived through this experience. These powerful data were also documented in life stories or narratives and, as noted earlier, were used to provide national testimony on NPR, on a national disability coalition Web site (http:/ /www.accessliving.org/), and at national hearings for the passage of related legislation and policies to support the rebalancing of funds to support community living alternatives (Singleton, 2005).

Project partners were successful in getting several high-level policy makers and long-term care and community-based agency administrators to the project’s town hall meetings so that they could hear from participants firsthand about their issues and become engaged in discussions of the project’s policy-related goals and objectives. A state-level agency director present at a town hall meeting observed by one of the authors thus commented on how hearing directly from current or recent nursing home residents “opened my eyes” to the need to fight more actively for some of the policy changes being advocated. At the town hall meetings, he and other policy makers were given handouts of both quantitative and qualitative findings from the study, which they in turn could share with others in positions of influence. For example, the finding that 98% of the SAG program participants (n = 140) reported not having access to information about their rights and options to live in the community caused policy makers to look at information access and to consider post-nursing home placement screenings to determine whether residents wanted to leave and what supports it would take to enable this to happen. As noted above, another policy-related activity undertaken by the partnership involved its work through Illinois State Medicaid and disability systems in writing and submitting to the CMS a series of systems change grants. Key among these was a grant to pilot test a Money Follows the Person, consumer-directed approach to community living support provision that was funded in 2007 via a 5-year, $55.7 million Phase I grant from CMS to the state of Illinois (CMS, 2007). Finally, and working in conjunction with other disability rights groups and CILs, legal actions were filed in the form of class action lawsuits to (a) contest Olmstead implementation for people with developmental disabilities in Illinois; (b) mandate the right to power wheelchairs, when needed, for people living in nursing homes; and (c) establish restitution and protocols to address abuse and neglect within nursing homes (Yednak, 2005).

Policy Implementation and Outcomes, and the Difficulty of Teasing Out Partnership Contributions

A changing political landscape (e.g., with increasing pressure to comply with the Olmstead decision) and the fact that numerous policy makers, advocacy organizations, and other players were working to help achieve some of the same policy objectives as the partnership, clearly precluded our teasing apart of the specific contributions of this CBPR effort to the enactment of particular policy changes. Feedback from the two policy makers interviewed, however, as well as substantial media coverage (cf. Adler, 2006; Cohen & Faccini, 2005; Hanney, 2004; Tsouderos, 2005) and interviews with community and academic partners (some of whom were leaders in the disability rights movement statewide and nationally), suggested that the partnership was perceived by a number of stakeholders as having substantially contributed to several policy and systems change efforts and outcomes. As noted earlier, data from the study also were cited as having been important in the policy advocacy undertaken. Both qualitative and quantitative findings from the study, for example, revealed that among those living in nursing homes, disabled people who were aging (e.g., those age 60 and older) and those older adults who experienced disability as seniors lacked access to community reintegration waiver support. Furthermore, older former nursing home residents now in the community were significantly less likely than their younger counterparts to have access to long-term community living supports, such as personal attendant services. Several policy makers used these data to successfully make the case for state funding of the pilot Senior Community Reintegration Program specific to people age 60 and older. Similarly, life story narratives, focus group data, and quantitative study findings showing that disabled people continued to experience personal attendant issues following the move to the community, together with SAG members’ effectiveness in sharing their own experiences and concerns at public hearings and in town hall meetings, highlighted the risks of reinstitutionalization. One significant risk was related to the need for access to a pool of back-up emergency personal attendants if a person’s regular attendant did not show up or was unreliable or unsuited to the position. In response, community activists were able to strategize with policy makers to fund the Emergency Personal Attendant demonstration program, run by CILs, that currently is being piloted. A policy maker we interviewed described the partnership as “instrumental in providing evidence to change our policies and to fund new demonstration projects, like the Senior Community Reintegration Program and the Emergency Personal Attendant Program in Illinois.”

Continued funding of the Illinois/Medicaid Homeand Community- Based Services Community Reintegration waiver, described by an academic partner as a particular victory given the backdrop of state budget cutbacks, was also a policy outcome to which Moving Out of the Nursing Home was seen as having contributed. Furthermore, the state’s reauthorization of a statewide council to evaluate long- term care policy and to prepare a strategic plan for rebalancing long-term care funding toward community-based care was described by several stakeholders we interviewed as an important intermediate step to which the partnership’s research and advocacy had made a contribution. Perhaps the most significant policy advancement was realized within the 2007 Money Follows the Person demonstration grant project in Illinois.

Finally, although two of the class action lawsuits mentioned above (Yednak, 2005) remain in litigation, the third (requiring the provision of power mobility to nursing home residents) was ruled in favor of the plaintiffs in 2006. This outcome was seen as critical in supporting people with disabilities in preparing for and then making the move out of nursing homes and back to the community.

Continued policy successes require the development and nurturing of community groups and individuals who can provide the next generation of policy advocacy leadership. Several sources we interviewed commented on this capacity-building dimension of the partnership’s contributions. Speaking specifically to one of the partnership’s key strategies, a policy maker remarked,

The town hall forums have educated, motivated, and involved hundreds of people with disabilities and provided them with necessary tools to advocate for full inclusion and opportunity for all. The result has been a great influx of new voices carrying the message that it is time for a policy shift in Illinois. . . . Policy makers are hearing this message and are reaching out to the disability community for additional collaboration.

The contributions of people representing these “new voices” also have received national recognition. In addition to the above- mentioned national coverage they received on NPR, the national disability rights organization ADAPT honored several SAG participants in 2004 for their continued activism as they left nursing homes and worked to help others do the same. Project participants’ use of personal narratives in national testimonials and actions to help effect policy change, and SAG graduates’ work on a project speakers’ bureau and in talking to rehabilitation professionals and case managers about how to prevent nursing home placements, also were underscored and have since been expanded and sustained on both the state and national levels (Adler, 2006).

In sum, although no precise attribution of contribution for the specific policy changes mentioned above can be made where the partnership or its SAG program were concerned, the widely perceived role of the partnership as a key player in helping to achieve a number of policy and other systems change victories was apparent in this case study. And equally important, in the eyes of some policy makers and others interviewed, was the role of the program in helping nurture a new generation of disability rights mentors and advocates from among one of the most oppressed social groups: disabled people in and transitioning out of nursing homes.

Barriers and Success Factors

In exploring more deeply the above-mentioned outcomes, numerous barriers were cited by the community and academic partners and by SAG program participants. Key among these was the power of the status quo in state government, particularly when the powerful nursing home and labor industry lobbies were involved. Community partners cited an example of how, largely at their urging, Illinois had commissioned a detailed report on what the state needed to do to comply with the ADA and the Olmstead decision. Bowing to political pressures, however, that report was transformed into a state program description and overview of accomplishments rather than an action plan to rebalance long-term care financing toward community living. As Gold (2005) has noted, absent a formal Olmstead plan, progress toward effecting change and reaching outcomes cannot be measured. Continued state funding for skilled nursing facilities and the state’s efforts to reopen a state institution that had been closed due to multiple violations were cited as additional examples of the government’s resistance to change.

Two related barriers to policy change involved the relative lack of decision-making authority of those allies who did work within state government and the tendency for the partners to be overly trusting in the state as a player. Shortly before our 2004 site visit, for example, a particularly hurtful situation took place. The CILs and their academic partners had put a great deal of energy into Grafting, with the state’s blessing, a systems change grant that would have pilot tested a Money Follows the Person program, including a menu of supports across agencies. Although the grant would have brought money into the state, the state began demanding numerous changes and rewrites and “at the 1 lth hour just pulled the plug.” Various partners we interviewed offered different possible explanations for this upsetting turn of events, but the overriding message conveyed was that “you can’t trust the state” in this kind of work, in part because the nursing home industry has “too firm a grip” for real change to take place. However, systems change progress was realized in the 2007 Money Follows the Person demonstration grant to Illinois allocating $55 million. Although the majority of barriers cited had to do with the difficulty of working through the state bureaucracy and the power of the nursing home industry, obstacles and barriers related to the partnership itself were discussed as well. A community partner highlighted, for example, the difficulty posed by the expectation that they would “put in lots of time” even though “there’s little money in the grants for community partners.”

A far bigger barrier, however, was described as involving the continued discrimination and prejudice against people with disabilities at all levels of society. A nursing home resident participating in a focus group commented on the state’s lack of understanding, saying, “They don’t see what we see and they don’t feel what we feel.” And an academic partner commented in reference to the particular mistreatment of disabled people in nursing homes:

[They are] eloquent, perceptive, talented people. One of the challenges of the project was to keep your equilibrium. You would see such real human tragedy-not the tragedy of disability, the tragedy of what happens to [people with disabilities]. Sometimes it was just mindboggling. We had to take breaks and they are living with it every day.

Often working to help counter such barriers and obstacles were a number of factors facilitating partnership and policy advocacy success. Among the most important of these was the strong and trusting relationship between the CBPR partners. A CIL staff member thus described an academic partner’s commitments to disability rights, saying, “She gets it in her bones.” This community partner also pointed out that within the disability community “a good critical mass of us trust each other. Part of our philosophy is ‘we’ll get farther together.’ Let those with depth of knowledge lead on any given issue.” Although one academic partner talked about CBPR as involving an “unholy matrimony” between scholarship and activism, alluding to the inherent tensions in such relationships, she and others pointed to the strong commitment of all partners in this project to both the research and the activism components of their work.

An interesting finding of this case study was the repeated tendency of a variety of partners to reframe obstacles or barriers to policy change as factors ultimately contributing to their success. As noted above, for example, the state’s 1 Ith-hour pulling of the plug on the initial systems change grants to CMS, although a source of much anger and disappointment, also was seen as having “cemented the relationship” between partners as they went through this painful rite of passage together. However, the long-term commitment of this systems change partnership helped to keep this issue on the table, and Illinois was able to compete for and receive a Money Follows the Person demonstration grant in 2007. This collaborative network continues to monitor the state’s activities within this grant and to participate in implementation of the Money Follows the Person program in Illinois.

The presence in Chicago of a rich network of disability organizations and of a diverse and vibrant disability community was described as greatly benefiting the partnership and the project, in part by providing a diverse pool of talent and expertise that could be called on. The solid relationship and regular dialogue between the academic and community partners, commencing long before this project began, also was cited as an important contributor to the project’s success.

Although, as noted above, the state bureaucracy was identified by many we interviewed as a formidable obstacle to implementing the action agenda of the project, a major facilitating factor involved the existence of some strong allies within that bureaucracy. As a focus group member still residing in a nursing home pointed out, the Division of Rehabilitation Services and its home service program have become “strong vocal partners” in the fight for change and also went with the partners on several occasions to help them seek the involvement of key people in the Department on Aging.

Other success factors included the level of advance work and strategizing in which partners engaged prior to attending key meetings with the state and other stakeholders. As one academic partner noted, “We always had a lot of evidence before we walked into a room [for] a meeting with the state,” including both “a ream of facts [and] life stories from participants … to challenge them to move forward if they can.” Also, e-mailing peers in other states to ask, “What did you do? How did you get this changed?” was described as a helpful strategy in enabling the partners to anticipate obstacles and plan ways for overcoming them.

As noted above, the immense, largely untapped talent of the community of disabled people in nursing homes and the powerful force for community building that ignites when they are brought together also were identified by several people interviewed as important factors in the project’s success. Finally, the existence of strong federal legislation mandating enforcement of the civil rights of disabled people and pressure on the state to comply with existing legislation were seen as having created a critical historical and policy backdrop against which to push for policy change.

Discussion

This case study examined the policy goals and outcomes of a unique CBPR partnership bringing together two grassroots CILs, academic researchers in a disability studies program, and an often- forgotten group of disabled people: those living in and attempting to transition out of nursing homes. Two central tenets at the heart of CBPR-participation and action (Gaventa, 1993)-were well demonstrated in this case study, whose SAG intervention model incorporated multiple strategies for promoting the participation of disabled people within the research process and in related policy- focused activities.

From a research perspective, Moving Out of the Nursing Home had several limitations. Participants included only those disabled people who were residents of Medicaid-subsidized nursing homes in Chicago and Cook County, so the study findings are not generalizable to privately funded nursing homes. The study also included only people with disabilities who were already motivated to move out of skilled nursing facilities. A larger sample across different nursing home and institutional settings, as well as community settings, would have been beneficial, as would cost benefit data that could help determine the impact of the intervention. Finally, loss of contact with some control group members, many of whom had moved from one nursing home to another and some of whom had become homeless, was a limitation of this study. Greater loss in the control group, however, may also reflect program success in achieving one of the its key objectives, namely, designing and implementing an intervention that helps disabled participants transition out of nursing homes and then continues to serve them as a long-term source of community support. In fact, many of the participants in SAG continue to participate in follow-up action research studies and to attend community town halls years after the project’s official end date. These town halls and several follow-up action research studies related to community reintegration, housing, and community participation still continue, with growing attendance by a cross- cutting disability and aging constituency.

Although the project was successful in demonstrating the efficacy of the SAG model in supporting the transition of disabled people out of nursing homes, the primary area of concern in this article- exploring the project’s impacts in the policy arena-proved considerably more challenging. In part, this difficulty stemmed from the complex web of sociopolitical, economic, and cultural forces affecting disability policy and reality, including, importantly, new pressures for policy change emanating from the Olmstead decision and the countervailing pressures represented most starkly in the continuing power of the nursing home industry. In addition, however, the fact that multiple players, including some policy makers and disability advocates well beyond the formal partnership, were concurrently working to study and address the institutional bias in long-term care funding and its meaning for those attempting to transition out of nursing homes makes any attribution of contribution for policy change difficult at best.

A number of policy reports have documented the institutional bias in long-term care policy and have highlighted as well the need for research that is directly tied to actions to address these policy- level issues (CMS, 2004; National Council on Disability, 2003). Two major funders, CMS (2004) and the Robert Wood Johnson Foundation (2004), have sponsored research to compare pilot demonstrations of consumer-directed programs of community living supports to professional or systemslevel-directed service provision. They further have supported efforts to begin to document the effect of systems change in different states. This pilot research consistently demonstrates that consumer-directed programming results in improved service quality, enhanced consumer satisfaction, increased workforce opportunities, and improved support systems to more flexibly meet the needs of people with disabilities (CMS, 2004; Robert Wood Johnson Foundation, 2004). In contrast, however, there is a dearth of research systematically investigating the role of the disability community in attempting to study and address-from the inside-the challenges faced by disabled people attempting to move out of nursing homes and back to the community. This case study represented an initial effort in that regard. The need for such research cannot be overemphasized. More than 80% of the states are spending less than 30% of their long-term care budgets on community living support (MEDSTAT, 2005). With no Olmstead plan in place, the State of Illinois is spending fully 80% of its long-term care budget on nursing home and other institutional care and has experienced a continual increase in the number of working-age people (age 60 and younger) with disabilities who are living in Medicaid-sponsored nursing homes (Illinois Department of Public Health, 2005).

All of these statistics bring to the fore the influence of political economic factors on community living choice. The SAG program partnership and participants repeatedly pointed to the strong opposition of the nursing home and related labor lobbies to the rebalancing of resources toward community living. A lack of political commitment to this policy-rebalancing initiative in the state was widely identified as a severe obstacle to the realization of statewide systems change (CMS, 2004). The dynamic context of political power and economic disincentives to rebalance long-term care budgets provided a compelling incentive for community members and researchers to work together through this CBPR project to attempt to effect policy change. The state’s funding of several pilot demonstrations to improve consumer-directed choice and community living support constituted an important example of a change to which this project was seen as having appeared to make a substantial contribution. Furthermore, these projects, and the community living, peer-mentored model promoted and evaluated within SAG, have been integrated into the Illinois Money Follows the Person demonstration grant project for statewide replication.

Equally important, however, a project like this one may be a promising vehicle for raising the awareness and critical consciousness of people with disabilities in nursing homes, many of whom lack previous involvement with the disability rights movement or action initiatives and who may never have been exposed to ideas such as empowered consciousness or disability rights and community. Building on such concepts, the CBPR partnership explored in this case study has sustained and expanded its initial efforts to actively engage in research and action, successfully applying for and receiving funds from federal sponsors and foundations to continue its CBPR work.

Community partners, academics, and project participants all offered thoughtful lessons learned based on their experiences in the project. A frequently voiced theme involved the need for open and honest dialogue and mutual respect between partners, especially in relation to mistakes made along the way. An academic partner thus commented that “it was around our mistakes that we had the richest discussions with our partners and participants,” often pointing the way to helpful changes in how things were being done. These “mistakes” often involved attempts to partner with the state on systems change grants that were not backed by a strong political commitment. Through honest feedback and shared reflection, these mistakes served to further solidify the community and academic research partnership.

The partnership’s conscious decision to support the needs and issues of the community versus those of the state, although important, does underscore the dilemmas that can surface in relation to mechanisms such as CMS systems change grants in which the state is required to take the lead and bring in community partners.

As in other CBPR projects (Sullivan et al., 2003), the community partners in this case study stressed the importance of having academics “go to the source [e.g., disabled people themselves], not just the providers and experts,” and be realistic about funding to cover the time and resource commitments needed from local community groups as these “could easily be underestimated.” In this project, two of the SAG facilitator positions, which were filled by disabled people, were paid for through the grant, a fact that helped to sustain the project during state budget cuts. The above-mentioned provision of honoraria, accommodations, transportation, and food to SAG group participants also proved important facilitating factors in encouraging high-level participation.

The importance of having a well-developed communications strategy, including a lobbyist in the capitol and other staffing to “get our message out to shape public opinion,” as well as “better packaging of the work we do,” also was stressed by a community partner. The need for-and challenges inherent in-having disabled people who are transitioning out of nursing homes involved in advocacy were pointed to by this same partner. As she noted,

We need to continue to find ways to get more consumers really hands-on involved in the advocacy struggle. If we want someone to go to [the state capitol] to tell the story, it’s not an easy thing to get people that have no money, just got out of a nursing home, probably have never been on a trip-yet they are the ones that [should] be doing it.

This telling quotation points to issues not infrequently encountered in trying to actively involve CBPR individuals who may have been living in oppressive conditions with little control for many years (Minkler & Wallerstein, 2008). Using peer mentors who had been through this experience themselves was an effective strategy for nurturing and scaffolding this participation over time.

Other lessons were shared concerning the involvement of disabled nursing home residents in the communitybuilding and policy advocacy dimensions of a project like this one. Key among these was the importance of creating a true safe zone so that residents are free to share their thoughts and experiences in a group setting, knowing that their remarks will be totally confidential and that they will not risk retaliation on their return to the nursing home environment. Safety considerations also were described as being critical to the project’s efforts to support participants in the creation of advocacy and social support networks, whether these are in physical places such as CILs or virtually via the Internet. Such work was described as central to promoting long-term critical consciousness and building a sense of community, as well as laying the groundwork for collective systems change activism.

Nursing home residents and “escapees” also spoke eloquently of the need to continually appreciate the importance of building their base through coalitions and collective action, particularly in light of the political and economic power issues within the state. The participants’ overriding message, however, was even more straightforward: “Have an effective plan to deal with every obstacle” and “Don’t give up. Just don’t give up.”

Note

1. Although the term people with disabilities often appears in the literature, the term disabled people and other “disability- centered” terms are preferred by many activists and scholars who promote positive disability identity as an act of resistance against disability oppression.

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Meredith Minkler

University of California, Berkeley

Joy Hammel

Carol J. Gill

University of Illinois at Chicago

Susan Magasi

Northwestern University and the Center for Rehabilitation Outcomes Research

Victoria Breckwich Vasquez

City of Berkeley Public Health Division

Marca Bristo

Access Living, Chicago

Diane Coleman

Progress Center for Independent Living, Chicago

Authors’ Note: The larger study on which this case study analysis was based was made possible by a grant from the W. K. Kellogg Foundation, and we are very grateful to the foundation, and particularly program officer Barbara Sabol, for their belief in and support of this project. Many thanks also are extended to study team member Shelley Facente for her help in data analysis, consultant Angela Glover Blackwell and her colleagues at PolicyLink, Project Director Victoria Breckwich Vasquez, and members of the National Advisory Board for their input and assistance throughout. We are grateful as well to the Social Action Group participants and community stakeholders and staff who gave freely of their time, and especially Tom Wilson, Mary Lopez, and Evelyn Rodriguez. Thanks also are due to Access Living and Progress Center for Independent Living, and particularly to Karen Tamley, as well as to the network of centers for independent living and activists who supported the Moving Out of the Nursing Home project. The Social Action Group was funded in part through the National Institute of Disability and Rehabilitation Research, Project No. H133G010033. Address correspondence to Joy Hammel, University of Illinois at Chicago, Joint Doctoral Program in Disability Studies, Departments of Occupational Therapy and Disability and Human Development, 1919 West Taylor Street, Room 311, Chicago, IL 60612; e-mail: hammel@uic.edu.

Meredith Minkler, DrPH, MPH, is a professor of health and social behavior at the School of Public Health, University of California, Berkeley. Her current interests include policy-focused communitybased participatory research to study and address health disparities, functional limitations in older adults, and critical gerontology.

Joy Hammel, PhD, OTR, is an associate professor in the Departments of Occupational Therapy and Disability & Human Development, Doctoral Program in Disability Studies, at the University of Illinois at Chicago and is principal investigator on the Social Action Group project. Her scholarship focuses on participatory action research with the community on community living and participation choice, control, and power, and equitable access to the built environment.

Carol J. Gill, PhD, is an associate professor in the Department of Disability and Human Development at the University of Illinois at Chicago. Her research interests include disability identity development, the health service experiences of women with disabilities, disability ethics, and professional training.

Susan Magasi, PhD, OTR, is a postdoctoral fellow at the Rehabilitation Institute of Chicago’s Center for Rehabilitation Outcomes Research and Northwestern University’s Institute for Healthcare Studies. Her research focuses on disparities in health and participation outcomes for women with disabilities.

Victoria Breckwich Vasquez, DrPH, MPH, MA, is chief of Community Health Action and Assessment for the City of Berkeley Public Health Division. Her interests are in working across disciplines to eliminate health and social inequities and improve health in vulnerable communities.

Marca Bristo is president and chief executive officer of Access Living in Chicago, Illinois, a center for independent living. Access Living serves people with various disabilities through self-help services, advocacy, and public education. She is particularly interested in issues of access and civil rights for disabled people and works on both the community and policy levels. She served as the chairperson of the National Council on Disability from 1994 to 2002, the first disabled person to serve in this position.

Diane Coleman, JD, MBA, is the executive director of Progress Center for Independent Living, a nonresidential service and advocacy organization operated by and for people with disabilities. The Community Integration Center program assists people to move from nursing homes back into their communities, and a number of people in this program were involved in participatory action research.

Copyright PRO-ED Journals Sep 2008

(c) 2008 Journal of Disability Policy Studies. Provided by ProQuest LLC. All rights Reserved.




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