Concept mapping key elements and performance measures in a state nursing home-to-community transition project

Evaluation and Program Planning 29 (2006) 10–22 www.elsevier.com/locate/evalprogplan

Concept mapping key elements and performance measures in a state nursing home-to-community transition project Dennis L. Poole a,*, Deborah Duvall a,1, Bethany Wofford b,2 a

College of Social Work, University of South Carolina, Columbia, SC 29208, USA b 4112 Avenue A, #1, Austin, TX 78751, USA

Abstract The literature reveals a patchwork of state and local efforts to transition persons with disabilities from nursing homes to community-based settings. To advance knowledge development, we conducted a concept mapping study with community participants in five pilot sites of a statefunded transition project in Texas. The study resulted in a visual statistical model of 14 key conceptual elements that they deemed essential in a nursing home-to-community transition project. Community participants reported that strategic components of the state project generally fit well with their perception of the ideal transition model, despite the need for performance enhancements in many areas. The original study did not advance knowledge very far beyond the patchwork of observations and findings reported in the literature. When elements in the original concept map were reduced from 14 to 6, and the new ones examined through the person-in-environment classification system, both the model and current literature on nursing home-to-community transition efforts achieved a greater level of theoretical coherence. q 2005 Elsevier Ltd. All rights reserved. Keywords: Concept mapping; Planning; Evaluation; Nursing home; Transition; Community; Disability

Virtually every state, in an effort to comply with the 1999 Olmstead decision of the US Supreme Court, now has a federal systems change grant to provide services to persons with disabilities in the most integrated setting. While a few states have made great strides in this direction (Reinhard & Fahey, 2003), most are still grappling with ways to transition this population from nursing homes to community-based settings (Center for Medicare and Medicaid Services, 2003). This is not surprising. One of the most difficult steps in any new initiative is to conceptualize key elements of the intervention plan. Another is to identify indicators to measure progress in the implementation of that plan at the local level. Both steps are difficult to accomplish, particularly when policy makers, planners, and evaluators do not have a substantive, integrated base of knowledge to guide the process. In the present case, much has been written on the rights and needs of persons with disabilities to move from nursing homes * Corresponding author. Tel.: C1 803 777 4886; fax: C1 803 777 3498. E-mail addresses: [email protected] (D.L. Poole), deborah.duvall@sc. edu (D. Duvall), [email protected] (B. Wofford). 1 Tel.: C1 803 777 4886; fax: C1 512 232 2165. 2 Tel.: C1 512 663 2698.

0149-7189/$ - see front matter q 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.evalprogplan.2005.11.006

to community-based settings, but comparatively little on strategies to help them do this successfully (e.g. Coleman, Fox-Grage, & Folkemer, 2002; Miller, Ramsland, Goldstien, & Harrington, 2000; O’Day, 1999). Most of the literature consists of anecdotal, descriptive accounts of state or local transition projects, rather than theoretical or empirical studies on strategic elements and performance measures. This trial-anderror approach to knowledge building is a concern, given the potential health, emotional, and social risks to this particular population (Fassino et al., 2001; Forrester-Jones et al., 2002; Gueldner et al., 2001; Howell-White, Palmer, & Bjerklie, 2001). O’Day’s (1999) nationwide survey was one of the first attempts to gather descriptive information on 108 transition projects sponsored by centers for independent living (CILs) in the United States. Initiated before the Olmstead decision, these projects facilitated nursing home-to-community transitions at the local level through the provision of diverse formal and informal support services. Exemplary organizations displayed strong advocacy tendencies, knowledge of federal and state policies and programs, commitment to principles of independent living, and belief in the right of persons in nursing homes to live in the community (Eiken, Burwell, & Asciutto, 2002a). For example, the ENDependence Center in Virginia collaborated with nursing home facilities to teach independent

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living skills to residents. The Center then helped these residents obtain affordable and accessible community-based housing, with financial assistance for apartment and utility deposits and for other transition-related expenses. Liberty resources in Pennsylvania provided peer counseling and independent living skills training, housing location services and financial assistance, adaptive equipment and personal assistance services, and clustered housing arrangements. Nursing facility residents in this consumer-directed program identified their own community support team and assumed responsibility for monitoring the provision of transition-related services. Similarly, the Wyoming Independent Living Rehabilitation Center offered independent living skills training, peer support, and assistance with adaptive equipment to divert individuals from nursing homes to community-based alternatives. Since Medicaid waiver services were extremely limited in the state, the center helped nursing home residents assemble a local network of formal and informal community supports—family, friends, volunteers, respite staff, and visiting nurses—to provide personal care and other community-based services (O’Day, 1999). Many current state transition projects build on these early CIL-sponsored local initiatives. The Nursing Home Transitions Demonstration Program in Michigan is a joint partnership between the Michigan Department of Community Health (MDCH) and the Michigan Association of Centers for Independent Living (MACIL) (Eiken, Burwell et al., 2002a). One of the first states to receive a Nursing Home Transition grant from the Centers for Medicaid and Medicare Services (CMS), Michigan utilizes CIL subcontractors to provide transitional assistance. MACIL develops assessment instruments and guidelines for consumer-centered planning throughout the transition process. CIL subcontractors conduct assessments, provide targeted outreach to enhance nursing facility cooperation, interface with state Medicaid waiver staff to facilitate access to personal care services. They also coordinate with local public and private agencies to obtain durable medical equipment, financial assistance, and other community support services. Barriers to success in the project include an annual cap on the number of individuals that can receive personal care services through the Medicaid waiver program, cumbersome administrative policies and procedures, and lack of affordable and accessible housing. The Homecoming Project in Wisconsin has a similar history (Eiken, Stevenson, & Burwell, 2002b). This project is a joint effort between the Wisconsin Department of Health and Family Services and eight CILs with considerable experience in nursing home-to-community transitions. Each CIL performs community outreach to recruit nursing home residents, and informs discharge planners and nursing home staff about the project to secure their cooperation and support. Relocation services include assessment, case management, independent living skills training, and peer support. Financial assistance is available for apartment deposits and other basic needs. Major barriers to project success stem from historical adversarial relationships between CILs and some county governments, as well as state limits on the number of nursing facility residents

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allowed to bypass the waiting list for the Medicaid waiver program. Another example is the Home to the Community Demonstration Program in Maine, a statewide initiative that preceded the state-operated program funded by CMS (Chaney & Croke, 2003; Saucier, Bolda, Richards, & Keith, 2001). The Alpha One Independent Living Center uses grant funds from the Robert Wood Johnson Foundation to implement the program without an affiliation with a state agency. The program targets individuals who can undertake self-directed care rather than those who prefer assisted living or residential care. Consumer transition services include facilitation, peer support, independent living skills training, and limited follow-up after transition. Advocacy efforts have streamlined state Medicaid procedures to obtain durable medical equipment, clarified use of state Medicaid funds for transition training, and secured resources from Maine State Housing Authority for technical assistance and home modifications. Lack of formal ties with state government and state restrictions on outreach services have been identified as barriers to state agency referrals to this project. Other barriers to success include lack of affordable and available housing, limited transition program options for consumers, inadequate outreach to and engagement of nursing facility staff, and lack of integration of the program with state long-term care entry and reassessment procedures. Thus, current literature on nursing home-to-community transition projects reveals a patchwork of state and local initiatives. Most have been designed and adjusted through trial and error, with little attention to theory or empirical research. Reports typically describe components of the interventions, make observations about lessons learned and best practices, and offer advice on ways to avoid or address flaws in state or local service delivery systems. Although knowledge development is usually an iterative process, which begins with scattered first-hand accounts of what works or does not work in different situations, the field of long-term care is poised for a more systematic, integrated approach to planning and evaluation of transitional programs for community-based living. In an effort to advance knowledge in this area, we conducted a concept mapping study with community participants in the Texas Community Awareness and Relocation Services (CARS) Project. Rigorous quantitative analysis of the qualitative data they contributed to the study generated a visual statistical model of key conceptual elements essential to successful transition of persons with physical disabilities from nursing homes to community-based settings. Concept mapping also generated statistical ratings on the relative importance of these elements, as well as performance levels of each during the pilot year. When elements in the original concept map were reduced from 14 to 6, and the new ones examined through the person-in-environment classification system, the model and current literature on nursing home-to-community transitions achieved a greater level of theoretical coherence. State policy makers, planners, evaluators, and advocates involved in such efforts should benefit from the findings, as well as the theoretical perspective that emerged in the study.

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1. Methodology The Texas Department of Human Services (TDHS) implemented the CARS Project in five areas of the state in June 2002. Its two chief goals were to increase community awareness of persons with disabilities at risk of nursing facility placement and to relocate eligible nursing facility residents to community-based settings. Although the primary target population was Medicaid beneficiaries in nursing homes, project services were available to any nursing home resident that wanted to transition to community-based living. Nearly 90% of the clients in the CARS project who transitioned out of nursing homes during the 1 year pilot project were 50 years of age or older. This was similar to the state percentage of nonCARS clients who did the same during this period (Poole, Duvall, & Wofford, 2003). Lead area service providers were Cambridge, Inc., Accessible Communities (ACi), Austin Resource Center for Independent Living (ARCIL), Crockett Resource Center for Independent Living (CRCIL), and Houston Center for Independent Living (HCIL). As a group, they provided project services in 33 counties of Texas: the City of Austin (Travis County) and eight other counties in Central Texas Hill Country; Bell and Coryell counties; City of Houston (Harris County); Crockett and eight other counties in rural East Texas; and Corpus Christi (Nueces County) and 11 other counties in the Coastal Bend area. Although outreach and relocation strategies varied somewhat, the range of services involved in the effort were similar across the five sites: outreach, assessment, case management, housing vouchers, financial assistance, durable medical equipment, permanency planning for children, home health, other community-based services. Members of an independent evaluation team, we used concept mapping to identify key conceptual elements in the project and to assess performance levels within each element during the pilot year. While there are many different approaches to concept mapping, the technology developed by Trochim (1989) is a powerful tool to conceptualize key conceptual elements or theoretical domains of an intervention plan. It can also be used to compare expected results with actual performance during or after implementation of a project or program (Jackson & Trochim, 2002). Available through Concept Systems, Inc. (2001), the technology allows policy makers, planners, and evaluators to analyze qualitative data on best practices through rigorous quantitative analysis. Multivariate statistical techniques of multi-dimensional scaling and hierarchical cluster analysis translate complex qualitative data on best practices into pictorial forms, or maps. These maps serve as models that display interrelationships among ideas or concepts in an objective form within the specific context of a study. Pattern matching can then be used to determine the degree to which two measures (pre- and post-measures, for example) agree or disagree, as well as the level of agreement between groups of community participants in their assessments (in this case, administrators/managers vs. direct service/support staff). Although this technology has been utilized for a variety of

purposes, we believe our study is the first application to planning and evaluation of a state nursing home-to-community transition project. We used three research questions to guide this component of the evaluation during implementation of the CARS project: † What key elements or conceptual domains must be addressed to help a person with physical disabilities move out of a nursing facility successfully? † How important is each element or domain? † To what extent does the Texas CARS project address these elements or domains?

1.1. Sample The sample consisted of 75 community participants who had prior knowledge and experience in long-term care or community-based services for persons with physical disabilities. Administrators and staff at the five project sites identified them from a list of local agencies and groups that we thought could contribute to the study. Most of them represented local human service organizations (nZ60), with a subset of consumers (nZ8) and advocates (nZ7) mainly representing the elderly. All study participants were assured protection under the guidelines of Human Subjects Review by the Institutional Review Board of The University of Texas at Austin. 1.2. Procedures The concept mapping method used in the study spanned four stages: Idea Generation, Sorting, Rating, and Data Analysis. We completed these stages between February and April of 2003. Interpretation, the fifth stage of concept mapping, was later completed and reported in the discussion section of this paper. 1.2.1. Idea generation The study began with a group brainstorming process. Groups of community participants at each of the five project sites were asked to think broadly about experiences of persons with physical disabilities who move from a nursing home to a community-based setting. They were then asked to brainstorm a list of ideas from the following focus statement: ‘Something that is needed to move someone out of a nursing home successfully is .’. Participants generated a total of 266 statements, including 40 by consumers. We eliminated 96 duplicative or vague statements, thus reducing the final list to 170 statements (Appendix A). A random numbers table was used to input them randomly into the concept mapping software. 1.2.2. Sorting Next, we mailed a set of the 170 statements on cards to 22 community participants in the original group who had agreed to participate in the sorting stage of the study. We asked them to

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sort the cards into groups that made conceptual sense to them, assign a label or name to each group, and return the sorted card groups in a pre-stamped envelope. Sixteen of the 22 participants returned useable packets, meeting the minimum requirement of 10 sorts in concept mapping (Jackson & Trochim, 2002). As a group, sorters were well represented across the five project sites: ARCIL (4), ACi (3), CIRCIL (4), Cambridge, Inc. (2), and HCIL (3). Seven sorters were direct service or support staff, eight were administrators or program managers, and one was a long-term care advocate. Community organizations and groups were well represented in the group: TDHS (3 sorters), CILs (3 sorters), CARS (5 sorters), area agencies on aging (1 sorter), long-term care advocates (1 sorter), and disability advocates (3 sorters). 1.2.3. Rating We then mailed two sets of five-point Likert-type rating sheets with each of the 170 statements to 67 of the 75 individuals in the original group of community participants. (Due to logistic problems and costs associated with direct personal interviews, we did not ask consumers to participate in this stage of the concept mapping study). The two rating questions were: † How important is this for helping someone move successfully out of a nursing home? (5ZExtremely important to 1ZNot important) † To what extent does the CARS project help to meet this need in your community? (5ZA tremendous amount to 1Z Not at all) To increase survey participation after an initial response rate of 50%, we put the same rating sheets on-line and sent them to non-respondents. This accommodated several respondents with physical disabilities, and increased the overall response rate to 73%. Forty-nine participants (73%) returned usable survey instruments for the first rating sheet. As a group, they distributed almost evenly across the five project sites. They represented diverse community organizations and groups, albeit some more than others: CILs (11), TDHS (6), Texas Department of Mental Health and Mental Retardation (5), area agencies on aging (5), community resource coordinating groups (2), nursing facilities (2), transportation (2), long-term care advocates (2), disability advocates (7), and CARS specialists (7). Thirty-four participants returned useable survey instruments for the second rating sheet. They, too, distributed well across the five project sites, with representation from similar community organizations and groups. 1.3. Data analysis We analyzed the data with software available through Concept Systems, Inc. (2001). Multi-dimensional scaling (MDS), a statistical technique similar to factor analysis, generated a concept map depicting graphical representations

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of relationships among the 170 statements. Using the MDS solution, a hierarchical cluster analysis grouped the statements into conceptual clusters, based on similarity of ideas. Since the statistical procedure does not provide a specific mathematical solution to determine the appropriate number of clusters (Shern, Trochim, & LaComb, 1995), we established the final number of clusters through a three part process: first, an examination of cluster mergers; second, an examination of specific values produced to indicate statement position on the map; and third, our conceptual understanding of the statement groupings. Concept mapping software also labeled the clusters, based on the statistically best fitting one from participant-generated labels with each cluster. We reviewed these labels individually and as a team, re-labeling some to best fit statements within the clusters. We later met with a subset of study participants at each of the project sites to get feedback on the cluster maps and our proposed changes in cluster labels. They concurred with the 14-cluster solution, but recommended minor changes in some cluster labels. Several were incorporated in the final concept map. Using rating criteria developed for the study, each conceptual cluster essentially became a domain of measurement. The concept mapping software generated an average rating for each statement from individual participant ratings on the two rating scales. Average cluster ratings from cluster statement averages then generated pattern match comparisons between rating scale clusters, as well as between participant groups (administrators/managers vs. direct service/support staff). A Pearson’s correlation coefficient (r) resulted from each pattern match. This allowed us to determine the level of consistency or agreement between two sets of average cluster ratings and between the two participant groups. 2. Results Results of the concept mapping study are presented in this section. They divide into the two major stages of data analysis: map construction and pattern matching. 2.1. Map construction The 14-cluster map solution produced by participant sorts and subsequent analysis is presented in the form of a point cluster map (Fig. 1). This solution provided the maximum number of interpretable conceptual elements, or domains, without losing distinctions between groups of statements. Equally important, the solution generated a final ‘goodness of fit’ stress value for the model of .30, after 14 iterations. This score falls within the reliability range of .10–.35 for map interpretation (Trochim, 1989). Each point in a map cluster represents one of the 170 original statements or ideas that community participants generated during group brainstorming sessions in response to the focus statement: ‘Something that is needed to move someone out of a nursing home successfully is.’. For example, statement number 93, located in the Consumer-Centered

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Nursing Facility Cooperation

Discharge Planning

22 130 87 42 40 18 29 158 162 125 31 147 52 Administrative 113 Relocation 80 149 20 134 62 163 76 Procedures Case Management 145 157 83 30 165 133 13 89 12 94 122 96 164 48 71 160 101 150 148 35 55 126 11 121 5 120 57 Community Education 102 63 170 37 32 21 38 91 73 & Advocacy 116 107 93 168 103 151 Caregiver 15 106 56 53 82 43 6 136 Support 51 123 128 156 167 81 131 66 27 4 137 Consumer132 108 8886 61 109 84 17 Assessment Centered Planning 19 23 127 39 139 9 99 44 65 118 140 119 112 75 138 85 72 74 45 129 58 7 155 90141 60 79 146 110 161 153 50 143 34 State Policy 26 28 124 92 78 41 2 Personal 47 97 & Funding Support 70 100 115 95 59 166 67 68 159 117 1 169 1016 154 135 111 Community-Based 114 24 98 Independent Living Training 77 33 46 Services 152 54 25 142 83 36 105 14 Housing Transitional Assistance 104 144 64 69 49

Fig. 1. Point cluster concept map: state nursing home-to-community transition model.

Planning cluster of the map, ties to the group brainstorming statement: ‘The resident has a chance to speak out about their experiences and feelings (their voice is heard).’ A complete list of statements within each of the 14 clusters is presented in Appendix A. Conceptual relationships between individual statements are indicated by distances between them in the map. Points located close together mean these statements were most often sorted together by study participants during the sorting stage of concept mapping. The farther apart the points on the map, the less likely study participants sorted them together—and hence,

Administrative Procedures

Community Education & Advocacy

the less likely they felt these statements, or ideas, relate to one another. For example, statement #93 is far from and therefore conceptually different than statement #125. The latter one, located far away in the Relocation Case Management cluster, refers to the idea that ‘On going monitoring of how services are being delivered’ is something that is needed to help someone move out of a nursing home successfully. For clarity and sake of discussion, a cluster map without points and numbers is presented in Fig. 2. The size of each cluster does not reflect importance or strength. One cluster is not more important or stronger than another because of its size.

Nursing Facility Collaboration

Discharge Planning Relocation Case Management

Consume r Center ed Planning

Assessment

Caregiver Support

State Policy & Funding CommunityBased Services

Independent Living Training Housing

Personal Support

Transitional Assistance

Fig. 2. Cluster concept map: state nursing home-to-community transition model.

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Each cluster represents distinct conceptual areas that community participants identified as a key element in helping a person move out of a nursing home successfully. Statements within each cluster therefore ‘hang together’ statistically—and conceptually. What follows is a brief description of the main ideas in each cluster of the map. They are presented in alphabetical order: 2.1.1. Administrative procedures Administrative policies and procedures should be streamlined, simplified, flexible, and oriented toward ‘fast track eligibility’ for a person in a nursing home. Administrators and staff in nursing facilities and local agencies, as well as nursing home residents, must be informed about these policies and procedures. 2.1.2. Assessment Holistic assessment should occur early in the process to empower residents to identify their own goals, needs, and capabilities; to assess their culture, personal risks, costs, and opportunities associated with relocation; and to identify support services available through agencies, family members, friends, peers, or volunteers. 2.1.3. Caregiver support Caregivers in the community should have adequate support services (e.g. training, supplies, assistance with forms and procedures, advice, information, and encouragement) to help family members or friends get what they need to live at home or in another community-based setting. Caregivers should also participate in discharge planning. 2.1.4. Community-based services Community-based services should be available, accessible, and affordable to the individual after leaving the nursing facility. Many involve formal services such as home health, transportation, durable medical equipment, and adaptive technology, while others involve informal services from friends, neighbors, relatives, and other volunteers. 2.1.5. Community education and advocacy Community education and advocacy should inform nursing home residents and the general public about the state nursing home-to-community transition plan, the right of an individual to move out of a nursing facility even with medical necessity, and local benefits associated with independent living. Advocacy is needed at the same time to expand local housing, transportation, and service options, remove barriers to independent living, protect individual rights, and promote interagency cooperation throughout the transition process. 2.1.6. Consumer-centered planning Consumer-centered planning should occur before, during, and after the transition. Consumers must be informed about their rights, encouraged to speak out about their feelings and experiences, participate fully in the assessment, and share responsibility for pushing the process forward. They should

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also be informed about available resources in the community as well as risks and opportunities associated with moving out of the nursing home. 2.1.7. Discharge planning Professionals and staff in nursing homes and community agencies should work as an interdisciplinary team during discharge planning to ensure logistics, timing, and resources are in place for persons to make the transition without a gap in services, their rights being violated, or safety to themselves or others jeopardized, while preserving dignity of risk. 2.1.8. Housing Safe, affordable, accessible housing options should be available in proximity to public transportation and to the mainstream of community life. 2.1.9. Independent living training Training should be available for individuals in transition to gain or regain independent living skills for paying bills, cooking, finding a job, getting around, recreation, entertainment, and other activities of daily living. 2.1.10. Nursing facility collaboration Positive, cooperative, reciprocal relationships with nursing homes should be developed to facilitate the transition process. These types of collaborative relationships help doctors, nurses, social workers, relocation specialists, and ombudsmen expedite paperwork, provide accurate and consistent information to residents, and work together for the greater good of the consumer. 2.1.11. Personal support Individuals moving from a nursing facility to a home or community-based setting should have access to personal support. Intimate and emotional support through a circle of friends, support groups, family or surrogate family members, or spiritual mentors can encourage and sustain those making the transition throughout the process. 2.1.12. Relocation case management Relocation case managers should play a central role in planning, assessment, coordination, and on-going monitoring during and after relocation. They also need to ensure that providers take responsibility for their share of the process and demonstrate sensitivity to individual needs and circumstances. 2.1.13. State policy and funding State policy and funding should enhance rather than impede community efforts to relocate individuals from nursing homes to community-based settings. State policies should eliminate bureaucratic and procedural constraints, integrate state services with local service systems, and enable people with physical disabilities to live in the least restrictive environment. State funding should be available to hire local relocation specialists and to create local incentives for expansion of accessible

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housing and transportation services for persons with physical disabilities.

successfully. The other scale asked them to rate the extent the CARS project met this need in their community. Rank order listings on the left side identify housing, relocation case management, assessment, community-based services, state policy and funding, transitional assistance, and consumer-centered planning as the seven most important elements or need areas for helping someone move out of a nursing home. The average rating score distance between the highest ranked cluster (Housing, 4.46) and the lowest ranked cluster (Personal Support, 3.83) is not large. Community participants believe that all elements of the model are important for helping someone move out of a nursing home successfully, with some elements slightly more important than others. Rank order listings on the right side identify assessment, relocation case management, consumer-centered planning, housing, community-based services, caregiver support, and community education and advocacy as the seven elements of the model most addressed at the community level by the CARS project. A moderate level of consistency or agreement (rZ.58) exists between participant ratings of elements most important to helping someone move out of a nursing home and those most addressed by the CARS project. In order words, community participants believe that strategic components of the CARS project generally fit well with their perception of the ideal transition model. There are three notable differences. First, average ratings scores are higher on the left side of the graph than the right. Participants believe there is a need for improvements in performance in most categories, beyond what was possible in the 1-year demonstration project. Second, consumer-centered planning ranks seventh in moving out need importance, compared to third in CARS project need performance, reflecting the high degree of attention project staff gave to

2.1.14. Transitional assistance Transitional assistance should be available to cover rent and utility deposits, or to purchase furniture and other household goods, when a person moves from a nursing home to a community-based setting. 2.2. Pattern matching The concept mapping software also generated visual statistical comparisons of participant ratings between clusters and among groups. These comparisons are called pattern matches. As shown in Fig. 3, a pattern match generated by concept mapping software looks something like a ladder. In this case, cluster labels appear on each side of the ladder in descending order by the average rating score given by community participants: the more evenly drawn the lines across the ladder, the greater the level of agreement between the rating averages of participants for the clusters. The ladder graph also includes three statistics: the number of participants that rated the clusters (n), the range of average cluster rating scores, and a Pearson’s correlation coefficient (r). The correlation coefficient indicates the level of consistency between average cluster ratings: the higher the coefficient, the greater the level of consistency or agreement between average rating scores on both sides of the graph. Fig. 3 compares average cluster rating scores between the two rating scales in the study: moving out need importance and CARS project need performance. As noted earlier, the first scale asked community participants to rate the importance of each statement in helping someone move out of a nursing home Moving Out Need Importance (n = 49)

CARS Project Need Performance (n = 34)

4.46 Housing Relocation Case Management

3.68 Assessment Relocation Case Management Consumer-Centered Planning Housing Community-Based Services Caregiver Support

Assessment Community-Based Services State Policy & Funding Transitional Assistance Consumer-Centered Planning

Community Education & Advocacy Transitional Assistance Discharge Planning Nursing Facility Collaboration Independent Living Skills Personal Support Administrative Procedures State Policy & Funding 2.84

Community Education & Advocacy Caregiver Support Administrative Procedures Discharge Planning Nursing Facility Collaboration Independent Living Skills Personal Support 3.83 r = .58

Fig. 3. Pattern match rating comparisons moving out transition need importance vs. CARS project transition need performance.

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this element of the model. Third, the sharpest, downward, diagonal line in the graph is average rating scores for the State Funding and Policy cluster. Community participants ranked this cluster fifth in moving out need importance compared to 14th in need performance. In other words, they considered state funding and policy an important component of the transition model, but largely beyond project control at the local level. Two other pattern matches compared average cluster ratings between administrators/managers and direct service/support staff on the two scales. The purpose of these pattern matches was to determine the extent to which these two key groups of community participants agreed or differed in their perceptions of need importance or project performance. The Pearson’s correlation coefficients (rZ.95 and rZ.96, respectively) indicate a high level of agreement between the two groups in both areas of assessment. 3. Discussion Concept mapping up to this point of the study revealed a high degree of complexity in the nursing home-to-community transition process, heavily dependent on personal needs and goals, state funding, and local resources. The methodology helped us identify 14 key elements a state should have in place to facilitate the transition of persons with physical disabilities from nursing homes to community-based settings. Community participants in five test sites rated all 14 elements as important in the process. They also reported that the Texas CARS project generally fit well with their perception of the ideal transition model, despite the need for performance enhancements in most strategic components of the state-funded initiative. Despite strengths, the original study did not advance us very far beyond the patchwork of information currently reported in the literature on similar transition projects. To achieve a high level of coherence, without losing any of the 14 elements of the original concept map, we had to search for a theoretical model that described or explained the relationships between these elements more efficiently. One that fits well with the data is the person-in-environment classification system frequently utilized in our own field, social work (Karls & Wandrei, 1994). The theoretical roots of this system trace to Bronfenbrenner’s (1979) early conceptualization of the environment as a set of nested structures that support (or undermine) human development and social wellbeing. The social ecology of interpersonal helping calls for a systematic, multi-dimensional assessment of the environmental context of the person in need of help or assistance. Building on Bronfenbrenner’s (1979) work, Kemp, Whittaker, and Tracy (1997: pp. 10–11) identify five different types of environments for practitioners to take into consideration: the perceived environment (constructed by the person in need of support); the physical environment (both physical and natural); the social/interactional environment (personal support network), the institutional/organizational environment (web of health and human services with which the client must deal); and the social, political/cultural environment (‘macro system’ of society, consisting of ‘political, cultural, and social values,

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Fig. 4. Nursing home-to-community living: person-in-environment model.

as well as laws and traditions’, which shapes attitudes toward challenges faced by persons with disabilities, and defines preferred solutions). State policy makers, planners, and evaluators involved in the design and assessment of nursing home-to-community transition projects for this population should benefit from this theoretical perspective. As shown in Fig. 4, when we reduce the number of clusters in the original concept map from 14 to 6, and adjust the terminology to fit the nursing home-to-community project, similarities surface between the person-in-environment classification system and the new (more parsimonious) transition model. The components of the new model are now conceptualized as environmental supports, which persons with physical disabilities would likely perceive as helpful in their efforts to transition from nursing homes to community living successfully. We describe each component below— without losing any data from the original 14-element model— and integrate what was once a patchwork of literature on nursing home-to-community transition efforts lacking theoretical coherence. 3.1. Person-In-Environment The core strategic component of the new model, Person-InEnvironment, is rooted in the social ecology of helping, which seeks to nurture and support the person’s active role in planning and assessment, typically from a consumer perspective. The need for person or ‘consumer-centered’ planning is widely cited in the transition literature (Chaney & Croke, 2003; Eiken, Burwell et al., 2002a; National Conference of State Legislatures, 2003; Reinhard & Fahey, 2003; Tilly & Kasten, 2001; Wiener & Brennan, 2002). Nursing home residents must be informed about their rights, encouraged to speak out about their feelings and experiences, and share responsibility for pushing the transition process forward. They must also be informed about available resources in the community, risks and opportunities associated with moving out of the nursing home, and their leadership role in directing the provision of community-based services. Holistic, environmental assessment also is needed to help them identify their own goals, needs, and capabilities; to assess personal risks, costs, and opportunities; and to locate medical and non-medical resources in the

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community to facilitate the transition (Eiken, Stevenson et al., 2002b; Fries, Shugarman, Morris, Simon, & James, 2002; The Lewin Group, 2000). The assessment must be flexible enough to accommodate cultural norms and values, individual goals and circumstances, and preserve dignity of risk (Burr & Mutchler, 1999; Himes, Hogan, & Eggebeen, 1996; National Conference of State Legislatures, 2002; Wiener & Lutzky, 2001). 3.2. Nursing home support Proceeding clockwise from the top of the new model, the first major component of the person’s institutional/organizational environment is the cluster labeled nursing home support. Nursing home doctors, nurses, social workers, and staff must provide accurate and consistent information to residents about their rights to live in the community and work together with community-based organizations for the greater good of the consumer. Administrative policies and procedures must be streamlined, simplified, and flexible to discharge eligible persons from nursing homes expeditiously (Chaney & Croke, 2003; National Conference of State Legislatures, 2002; Reinhard & Fahey, 2003). 3.3. Relocation support Another major component of the institutional/organizational environment is relocation support. Local human service organizations selected as lead contractors in state transition projects must have adequate infrastructure and experience to build positive, cooperative, reciprocal partnerships with community agencies, especially nursing homes, area agencies on aging, home health providers, housing and transportation authorities, and centers for independent living (Center for Medicare & Medicaid Services, 2002; Chaney & Croke, 2003; O’Day, 1999; Saucier et al., 2001). Advocacy experience is another important organizational characteristic (Chaney & Croke, 2003), as long as historical frictions between the relocation agency, nursing homes, and other local entities do not preclude the possibility of collaboration and teamwork for the good of the consumer (O’Day, 1999). Direct service staff of the agency must be skilled in case management, personcentered planning and assessment, and monitoring the provision of community-based support services for this particular population. Case managers should have in-depth knowledge of community-based service systems as well as skills in collaborative discharge planning to ensure logistics, timing, and resources are in place for nursing home residents to make the transition (Eiken, Stevenson et al., 2002b). 3.4. Home and community support The third major component of the new model is home and community support. This component spans both formal community-based services in the institutional/organizational environment and those provided informally through (or in combination with) the person’s natural support networks.

Formal community-based services involve CBA, home health, personal care, durable medical equipment, medications, adaptive technology, and transportation, while others involve personal support services from natural helpers, such as family members, friends, neighbors, and volunteers (Chaney & Croke, 2003; Eiken, Stevenson et al., 2002b). Informal caregiver support from formal service provides must be in place (e.g. training, supplies, assistance with forms and procedures, advice, information, and respite) to help family members, friends, peers, and other natural caregivers assist the person with activities of daily living as needed (Eiken, Stevenson et al., 2002b). Personal support must be available to encourage and sustain the person throughout the transition process (O’Day, 1999; Saucier et al., 2001). 3.5. Independent living support The fourth major component, independent living support, mainly seeks to help the person deal with challenges in physical environments of the community. Safe, affordable, accessible housing must be available in proximity to public transportation and the mainstream of community life (Chaney & Croke, 2003; Choi, 2004). Transitional assistance must be available to help former nursing home residents purchase furniture and other household goods, cover rent and utility deposits, and pay for transportation (Chaney & Croke, 2003; Eiken, Burwell et al., 2002a; O’Day, 1999). Independent living training must be available as well to help the person manage community-based living environments by hiring attendants, taking advantage of recreational opportunities, accessing transportation, and engaging in purposeful community activities (O’Day, 1999; Saucier et al., 2001; Wiener & Brennan, 2002). 3.6. Macro policy support Macro policy support, the final component of the new model, deals with the social, political/cultural environment of the person in need of help. As noted earlier, this environment reflects the macro system of society (values, laws, and traditions) which shapes attitudes toward persons with physical disabilities, and defines preferred solutions to challenges in independent living. State policy and funding must increase the availability of home and community-based services through Medicaid waivers, housing vouchers, and other state programs, and generate systemic change toward community-based models of support for persons with disabilities (Coleman, Fox-Grage, & Folkemer, 2002; Davis, Fox-Grage, & Geshan, 2003; Miller et al., 2000; Reinhard & Fahey, 2003; National Conference of State Legislatures, 2002). State policy and funding also must support community education and advocacy efforts to inform consumers, the public, and nursing homes about the state’s independence plan (Eiken, Burwell et al., 2002a) and to streamline administrative procedures for nursing home residents to get on the ‘fast track’ of eligibility for community-based services (National Conference of State Legislatures, 2002; Miller et al., 2000; O’Day, 1999).

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4. Evaluation lessons learned Findings of this concept mapping study were based on perceptions of 75 community participants, distributed across five community service delivery areas of Texas, who had prior knowledge and experience in long-term care or communitybased services for persons with disabilities. As a group, they represented the views of administrators, staff, advocates, and a small subset of consumers in the five pilot sites of the Texas CARS project. Future studies should include state planners and policy makers as key participants in the process, as well as a larger sample of consumers that have transitioned from nursing homes to community-based settings. This would ensure that all key stakeholders were involved in planning and evaluation and increase confidence in the data generated in the process. The other evaluation lesson is that concept mapping alone did not advance our knowledge very far beyond the patchwork of information currently reported in the literature on nursing home-to-community living transitions. We had to utilize theory, specifically the person-in-environment classification system, to make better sense of the data generated by community participants, and to achieve a greater level of theoretical coherence among the elements of the transition model. Appendix A. Verbatim statements generated by community participants during brainstorming sessions A.1. Number/Statement 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19.

Peer and non-peer relationships Circle of friends—one-on-one individual support system Interdisciplinary discharge planning Educate communities about laws that have changed regarding people with disabilities Service providers accept their responsibility Allow the individual the choice to return to a nursing facility Monitoring and mentoring by peer or natural supports More time for discharge planning In-home healthcare (skilled nursing care, Medicare funded, private pay, insurance) Employability, if applicable Someone to be accountable for service delivery Someone to take the lead role on the team to ensure that services are coordinated Professionals to work with each other so that resources are explained better Housing accessible to transportation and community services Include family and friends in assessment, case management and service coordination Job skills (if employable) Motivation for living on their own in community life A group of people to define who is an appropriate referral for transition Medical network, including medications

20. 21. 22. 23. 24. 25. 26. 27.

28.

29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48. 49. 50 51. 52. 53. 54. 55.

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Simplified paperwork Communication Positive partnerships with nursing facilities Supplies at home to take care of the person (for wounds, bags, etc.) Money is flexible for what is needed Financial resources/income Adequately funded community resources (policy decisions about how resources are used) Culture change and regulatory reform to allow individuals to take personal risks without jeopardizing eligibility for services Extend ‘the money follows the person’ (i.e. Rider 37) mechanism to people who need MH/MR community services Agencies coming together for the greater good of the process A plan to provide intensive services at the time of relocation Fast-track eligibility process for support services when the person is being discharged from nursing home Ongoing services are provided (perpetual care). Fixing only one thing at a time is not sufficient Accurate information on housing Establishment of social network Case worker to suggest providers when the person moves out of the nursing facility Housing available when needed What the person transitioning says should drive priorities Free communication between consumers and other stakeholders Emotional support for care-givers Follow-up mechanism to nursing facility once the individual relocates Adequate family support Discharge planning begins when person comes into the nursing facility Holistic individualized services, supports, and planning (community, medical, mental health) Community supports and resources are available Continued funding and expansion for the relocation specialists without the huge caseloads Alternative funding sources (charitable organizations) Independent living skills training Agencies support flexibility for staff working outside the box Buy-in at the right levels in nursing facilities (administrators as well as clinicians) Insurance Realistic expectations of risks, costs, and available support when the person goes home Organizational and institutional cooperation, collaboration and communication Patient and family member talk about what will happen when the person comes home Accessible/Affordable transportation Relocation case management and service coordination

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56. Identify needs in the community prior to the individual moving out 57. Client advocacy 58. Mentor with independent living skills (getting around, work, paying bills, financial skills, cooking, social skills) 59. Purposeful activities 60. Sense of purpose for existence (self-esteem, dignity, selfworth) 61. Assistance with SSI 62. Better discharge planning to send people home 63. For doctors and nurses to explain to the person how to get what is needed 64. Housing options (shared housing, with family, with support families, on own, assisted living, transitional) 65. Ensure that the individual has assistive technologies that are needed 66. Pre-transitional emotional preparation 67. Access to spirituality, humanities 68. Activity/recreational outlets 69. Affordable housing that is accessible to accessible public transportation 70. Funding these alternate families 71. Professionals to take time to explain their services completely 72. Help with financial management, budget 73. Follow-up and monitoring of informal supports 74. Increase the community capacity and funding (direct care wages) to provide services 75. Adaptive equipment in the home 76. Have professionals take correct messages 77. Individualized transportation planning 78. Someone to help the person in their home (family, volunteer or someone else) 79. Attendant management—what to expect of attendants, how to notify authorities if there are problems 80. Professionals to give better contact information 81. Realistic assessments of supports 82. Systems advocacy (systemZagencies) 83. Safe housing (location, neighborhood environment) 84. Communities to understand how they will benefit by assisting the consumer trying to transition 85. A willing and caring community 86. The consumer is committed to making it happen and accepts responsibility for pushing the process forward 87. Offer better feedback to nursing home staff that are doing the best they can 88. Consumers educated about assessment, transition process, and their rights 89. Be able to get doctors’ signatures when needed 90. Commitment of family and friends to help the person 91. Residents know the individual is allowed to leave the nursing facility even with medical necessity 92. Have a good support system 93. The resident has a chance to speak out about their experiences and feelings (their voice is heard) 94. Community case manager to coordinate all services support

95. 96. 97. 98. 99.

100. 101. 102. 103. 104. 105. 106. 107. 108. 109.

110. 111. 112. 113. 114. 115. 116. 117. 118. 119. 120. 121. 122. 123. 124.

125. 126. 127. 128. 129.

Support from private/for-profit sector Prioritize relocated consumers for doctors’ visits Spiritual support Start up money for rent, furniture, deposits, household goods, clothing, etc. Adequate DHS community program support (Medicaid, CBA, Primary Home Care, Family Care, CLASS, MDCP, Respite Care) Support groups Let the person fail without the threat of re-institutionalization, i.e. dignity of risk being allowed Provide information to individuals who might want to move out of a nursing facility Spend time on educating the consumer on roles and responsibilities they will have Affordable accessible integrated housing Emergency assistance resources for home maintenance Individual needs to take an active role in the process of relocating Assessment of what the person is capable of doing Consumers educated about available resources and any limitations Educate the legislature on the importance of transition programs and other programs which are part of service plans Access to adaptive technology and durable medical equipment Grants to the individual More money from the legislature and other governmental entities For the nursing facility to inform Medicaid and social security that a person is moving out Home furnishings (furniture, pots/pans, linens, etc.) Surrogate or alternative family support Assessment of what services are available Public assistance Move the money available for support in the nursing facility to the community Support and training for family Paid independent service coordinator whose focus is the resident Someone out there recruiting, assessing, and supporting alternate families Community case manager to make sure services are delivered Supplies get to the person quickly Support services (food stamps, CBA, waiver programs, home health agencies, durable medical equipment, medication programs, transportation, and utilities) Ongoing monitoring of how services are being delivered Referrals to available resources Understand the importance of informal supports For the individual to be able to get in touch with nurses when needed Way for the relocated person to contribute (contribution to society, volunteering, interests)

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130. Early assessment while in nursing home of transition probability 131. Ensure community-based primary healthcare 132. Everyone around the person needs to make sure the person gets what he/she needs 133. Make sure everything is in place before they move out 134. Be careful to not screen folks out based upon our perceptions of their disabilities or their support needs 135. Adequate finances for personal items such as food, clothing, transportation, social, recreational activities, etc. 136. More literature going to people to inform them the CARS program is here 137. PR campaign for community options and community services 138. Preparation to learn to live in own home with new skills sets (including assistive technologies) 139. Provide means for consumers to speak to legislators—consumer advocacy 140. Medical support/hospice 141. Family willingness to have person at home 142. Coverage of living expenses 143. Education opportunities (learn a skill or hobby) 144. Housing modified to meet person’s own needs before transition 145. Streamline policies and procedures 146. Funding is based upon individual needs instead of cost caps 147. For the professionals (doctors, nurses, etc.) to take care of paperwork quickly 148. Person must not be a danger to themselves or others while living on their own 149. Assistance and incentives are provided for nursing home industries to transition to a community-based model 150. Prioritize nursing facility residents for immediate access to MHMR services 151. Support people to help the person deal with professionals 152. Housing that meets safety standards 153. Sustained emotional support for continued transition 154. Resource list of wholesale and discounted services (i.e. hair, automotive care, maintenance, tax assistance) 155. Commitment of support services to help the person 156. Be proactive to make community services available so people do not have to go into the nursing facility in the first place 157. The team works together so that there is not a gap in support—logistics and timing 158. Have more reciprocal relationships between nursing homes and agencies 159. Food stamps 160. Follow-up and on-going assessment and assistance 161. In-home support services for the family and client

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162. Educate the management and social workers at the nursing facility 163. Complete assessment (person and environment) for health, safety, and welfare issues 164. Be sensitive to the individual’s needs and circumstances 165. Individual service plan developed with the person who is relocating 166. Community support (faith-based or other organizations) 167. Preventive healthcare education (medication, dental care, common-sense approach to maintaining health) 168. Cultural change and regulatory reform to allow the individual to determine their own level of support 169. Emotional intimacy for the person transitioning 170. Meet people where they are—people need individualized supports and services to get them where they want to be

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Dennis L. Poole is Dean and Professor in the College of Social Work at the University of South Carolina—Columbia. At the time of this research project, Dr Poole was Professor of Nonprofit Management and Community Building at the University of Texas School of Social Work—Austin.

Deborah Duvall is assistant to the dean in the College of Social Work at the University of South Carolina—Columbia. At the time of this research project, Ms Duvall was an associate in the Organizational Excellence Group at the University of Texas—Austin.

Bethany Wofford is a budget analyst for the Health and Human Services team at the Texas Legislative Budget Board.