Massachusetts Health Passport Project Evaluation Final Report

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Boston College Law School Digital Boston College Law School Boston College Law School Faculty Papers Massachusetts Health Passport Project Evaluation Final Report Francine Jacobs Tufts
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Boston College Law School Digital Boston College Law School Boston College Law School Faculty Papers Massachusetts Health Passport Project Evaluation Final Report Francine Jacobs Tufts University, Rachel Oliveri Jessica Greenstone Tufts University, Claudia Miranda-Julian Tufts University, Follow this and additional works at: Part of the Health Law Commons, Juveniles Commons, Social Welfare Law Commons, and the Women Commons Recommended Citation Jacobs, F., Oliveri, R., & Greenstone, J. (2009). Massachusetts Health Passport Project Evaluation Final Report. Medford, MA: Tufts University. This Article is brought to you for free and open access by Digital Boston College Law School. It has been accepted for inclusion in Boston College Law School Faculty Papers by an authorized administrator of Digital Boston College Law School. For more information, please contact Massachusetts Health Passport Project Evaluation Final Report Francine Jacobs, Ed.D., Principal Investigator Associate Professor, Eliot-Pearson Department of Child Development/Department of Urban and Environmental Policy and Planning Tufts University Rachel Oliveri, M.A., Project Director Jessica Greenstone, M.S., Senior Research Analyst with Claudia Miranda-Julian, M.S., Research Consultant Eliot-Pearson Department of Child Development/ Department of Urban and Environmental Policy and Planning Tufts University Medford, Massachusetts July Massachusetts Health Passport Project Evaluation PRINCIPAL INVESTIGATOR Francine Jacobs, Ed.D. Eliot-Pearson Department of Child Development and Department of Urban and Environmental Policy and Planning, Tufts University 105 College Avenue Medford, MA SENIOR RESEARCH TEAM Rachel Oliveri, M.A. Jessica Greenstone, M.S. Claudia Miranda-Julian, M.S. Prepared for Francine Sherman, Esq., Director, Juvenile Rights Advocacy Project at Boston College Law School The Massachusetts Health Passport Project Evaluation (MHPPE) acknowledges the support of Francine Sherman, Director, Juvenile Rights Advocacy Project at Boston College Law School, who received partial funding for this evaluation from the Jacob and Valeria Langeloth Foundation, The Boston Foundation, and the Blue Cross Blue Shield of Massachusetts Foundation. All conclusions drawn in this report are those of MHPPE, and do not represent the opinions of those funders. Massachusetts Health Passport Project Evaluation c/o Prof. Francine Jacobs Eliot-Pearson Department of Child Development and Department of Urban and Environmental Policy and Planning, Tufts University 105 College Avenue Medford, MA This report should be cited as follows: Jacobs, F., Oliveri, R., & Greenstone, J. (2009). Massachusetts Health Passport Project Evaluation Final Report. Medford, MA: Tufts University. Additional copies of this report may be obtained from Francine Jacobs at or Francine Sherman at 2 TABLE OF CONTENTS Executive Summary Page 4 Massachusetts Health Passport Project: Program and Evaluation Page 18 Section One: Needs-Demand Assessment Page 29 MHPP Pilot Health Survey Page 48 Section Two: Describing the Program Page 78 Detailing MHPP Staff, Services, And Participants Page 79 Section Three: Quality Review Page 119 Program Model and Implementation Analysis Page 120 Exploring the Massachusetts Health Passport Project as a Page 193 Gender-Responsive Program The Influence of Parents and Families on Youth s Health Page 240 Practices and Beliefs Section Four: The Perceived Effects of MHPP Page 263 Systems Change and the Massachusetts Health Passport Project Page 275 Section Five: Findings and Recommendations Page 302 3 EXECUTIVE SUMMARY This executive summary highlights the key findings to emerge from the Massachusetts Health Passport Project (MHPP) Evaluation, a multi-year study with data collection spanning from November 2005 through December 2008 of MHPP. This executive summary includes a brief description of the program and the evaluation and summarizes key findings relevant to the program s operations and attainment of goals. Massachusetts Health Passport Project Services and Goals The MHPP began in April 2004, as a pilot program of the Juvenile Rights Advocacy Project at Boston College Law School under the direction of Francine Sherman, Esq. The program was originally called the Girls Health Passport Project (GHPP) and was designed to address the unmet health needs and gaps in health care services for girls committed to the Massachusetts Department of Youth Services (DYS) and re-entering their communities from DYS assessment and treatment facilities. An advisory board of health, juvenile justice, philanthropy, and evaluation professionals assisted the program in its early development. The original GHPP theory of change stated that, Better health care access coupled with system change will yield better health for system involved girls (Massachusetts Health Passport Project Planning Grant proposal to the Jacob and Valeria Langeloth Foundation, 2005). Four key program goals emerged from this program theory: Improve health care access for enrolled youth; Create changes in relevant systems; Improve social supports for enrolled youth; and Improve health status for enrolled youth. Beginning in March 2007, the program expanded from serving DYS-committed girls in Boston to serving DYS-committed boys in Boston. Subsequently, the program expanded to Worcester, first to girls in November 2007 and then to boys in October Evaluation data indicate that the program served approximately 173 youth (109 girls, 64 boys), though this figure does not take into account youth who may have been served by the program informally or indirectly. Until 2008, MHPP was intentionally staffed by nurses who could offer direct medical consultation to youth, access medical records, and educate youth and DYS staff about health issues and community health care services. In February 2008, the MHPP boys program in Boston was staffed by an HIV prevention counselor who had previously worked within DYS facilities. The program has partnered with two community health centers in Boston, first Codman Square Health Center (CSHC) in Dorchester and then Sidney Borum, Jr. Health Center (SBHC) in Boston and one in Worcester, Great Brook Valley Health Center (GBVHC). The MHPP services have varied from site to site, though they have generally included the MHPP 4 health advocates conducting health assessments, referring youth to health care providers and services in their communities, offering individual and group health education, and communicating with DYS and Community Re-entry Center (CRC) staff about clients and program operations. Massachusetts Health Passport Project Evaluation In November 2005, Sherman awarded a six-month planning grant to an evaluation team at Tufts University, headed by Professor Francine Jacobs of the Eliot-Pearson Department of Child Development and the Department of Urban and Environmental Policy and Planning. The MHPP evaluation design is based on Jacobs s Five-Tiered Approach (FTA) to evaluation. 1 The FTA is developmental in nature, organizing research activities at five levels. The first tiers are process, or operations, oriented, and the fourth and fifth tiers are focused on measuring or determining outcomes. The assumption inherent in this model is that outcome evaluation is built on the data collected at earlier stages. The MHPP Evaluation was designed as both a process-oriented and an outcome-oriented evaluation. The research questions were as follows: What are the core needs and preferences for health care among system-involved girls? How do these needs and preferences compare to those articulated by system-involved boys? What are the processes by which the MHPP is implemented in its current sites? Who is the MHPP serving (numbers, demographics of youth served) and what are the ways in which these youth are being served by the program? How do changes in the program s staffing and partnering health centers affect, if at all, the way the program is delivered and received? What does it mean for MHPP to be gender-specific or gender-responsive? Are there similarities and/or differences between how the MHPP is delivered to girls and how it is delivered to boys? What are the perceived roles that parents/guardians play in their child s health care? What are the perceived roles that parents/guardians play in the MHPP? What efforts, if any, has the MHPP made to involve parents? What are the perceived outcomes of parent involvement (or lack thereof) in the 1 Jacobs, 1988; Jacobs, 2003; Jacobs & Kapuscik, program? What do program staff, partners, and youth participants perceive to be the effects, if any, of the MHPP to date? 2 What changes, if any, in the DYS s approach to health care have occurred since the MHPP s inception? What is the perceived role of the MHPP in facilitating these changes in the system? Methodology Sample Size The data collected and analyzed over the course of the MHPP evaluation include interviews and focus groups with senior DYS officials, DYS health care and direct service workers, MHPP staff, community health center partners, and funders (N = 94), as well as interviews and focus groups with system-involved girls and boys (N = 41), a pilot health survey administered to a group of DYS-committed boys (N = 20) and interviews with individuals outside of DYS with expertise in providing health and/or support services to adolescents (N = 4). It should be noted that it was difficult for the evaluation team to gain access to youth due to their frequent movement in and out of the community, the consent requirements of the Tufts Institutional Review Board, and the assistance with recruitment of youth and getting consent forms signed by youth and parents that the evaluators relied on from already overextended MHPP and DYS staff. In total, we collected data from 61 youth (22 girls and 39 boys) through interviews, focus groups, and surveys. A portion of these youth were involved in MHPP and a portion of these youth were not. In their subgroups (e.g., the six girls interviewed for the parent study), the numbers are undoubtedly too small on which to base program initiatives. However, even these small numbers of youth raise provocative issues that program developers might consider. Further, aggregated across subgroups (e.g., girls interviewed for the needs assessment, boys participating in the health pilot survey, and girls interviewed for the parent study) and about a particular topic, for example, their health concerns, or their desire for parents to be involved in their health care, their perspectives take on additional weight. Data Sources The data sources for the MHPP evaluation include the following: Key informant interviews and focus groups with adults; 2 It was the initial intention of this evaluation to assess both MHPP program processes and its observed outcomes. However, due to an unexpected drop in the census of girls at the participating CRCs, and a smaller research budget than anticipated, the assessment of program outcomes is, rather, at the level of perceived effects, or those program effects as perceived and reported, but not observed, by key informants. 6 Key informant interviews and focus groups with youth; MHPP and DYS databases; MHPP health advocates monthly reports; Notes from CRC site visits; Meeting notes; Program documents (e.g., proposals for funding, logic model); DYS documents (e.g., annual reports); and Review of relevant literature. Data Analysis Our interview and focus group transcripts were coded using a qualitative data analysis software package, ATLAS.ti. Codes were generated directly from the data and organized thematically. We used cross-case analysis (Miles & Huberman, 1994) to examine perceptions of systems change shared across the interviews. Analysis of the MHPP database and health utilization surveys involved using a quantitative data analysis program, SPSS, in which a variety of statistical analyses were employed (e.g., descriptives, chi squares, correlations). Major Findings The evaluation produced scores of findings with relevance to MHPP operations and the attainment of its goals. The findings noted here are considered the most consequential for policymakers and program designers. MHPP is an example of a promising private/public partnership in health care. Collaborations of this sort generally are difficult to establish and maintain; Sherman s considerable skills in this area, combined with DYS s and the partnering health centers willingness to join the effort, represent a core strength of this program. This is an essential element of any attempt to innovate in health care services for youth in the juvenile justice system. MHPP appears to have influenced DYS s approach to providing for the health needs of youth under its supervision, as well as the partnering health centers level of attention to, and interest in addressing, those needs. The MHPP s focus on the health of system-involved youth, and the imperative to have good quality health care available when they return to their neighborhoods and communities, was reported by many to have affected the institutional behaviors of both systems. In this sense, MHPP appears to have made significant progress toward achieving its desired outcome of system change. On the other hand, MHPP, in its current form, has not been fully adopted by either system, and is unlikely to be in the near future. The principles that undergird MHPP have found broad resonance among the evaluation s informants, and across the relevant theoretical, empirical, and practice-oriented literatures. These principles pertain both to the desired outcomes for health-related interventions for system- 7 involved youth, and to the approaches to be used to achieve them. They include, for example, the goal of improved health access, and ultimately health status, of systeminvolved youth; the promotion of gender-responsive programming; the investment in developing and sustaining professional collaborations; and the belief that building supportive and nurturing relationships with youth is the cornerstone to achieving these goals. While the full MHPP model may not be sustainable or replicable, there are specific elements of the model which seem eminently exportable. The MHPP model in its current form, with its emphasis on independent health professionals managing youth s health care at community re-entry centers, appears not to be sustainable within this state s juvenile justice system. In addition, other contextual factors such as the reliance on private funding, a relatively health resource-rich state that provides health insurance coverage to all youth committed to DYS, and a relatively progressive juvenile justice system make the model less exportable to other states without such an infrastructure in place. However, certain programmatic components for example, connecting youth to a community health provider, providing youth with health education, and building relationships between community agencies in the interest of serving youth s health needs are likely generalizable to other contexts. The MHPP goals were overly ambitious for a program of its scale, supported by soft funding, and dependent on the active support and participation of the agencies and individuals involved. However energetic the program s director and staff, there are limits on the ability of a modest program such as MHPP to have the effects on health access, health practices, health status, social supports, etc. it intended. At a minimum, this is an issue of dosage too little intervention to comprehensively address the health care needs of system-involved youth. Further, factors on the individual, family, community, and system levels (e.g., the transience and fluctuating census of committed youth, lack of long-term investment in the program from the partnering systems) likely moderated the program s ability to achieve its goals. It is difficult to estimate the reach or penetration of MHPP into the population of DYS-involved youth needing its attention. The program database includes ~116 youth, across the sites, over the five years of MHPP s operations; a percentage of these youth were seen more than once, some on numerous occasions. In addition, MHPP health advocates interacted informally with other youth who are not represented in the database. The MHPP staff work limited hours, and spent a percentage of their time providing indirect or collateral services for their clients consulting to DYS and CRC personnel on specific health problems, working through health insurance matters, etc. Since the program did not set target figures for the number of clients to serve, and indeed, the census at CRCs fluctuates sufficiently to make that hard to do anyway, we cannot judge the effectiveness of MHPP s outreach efforts. There was, however, a large drop-off in Boston girls served which warrants further investigation. 8 While MHPP did not develop a formal health passport document, it did demonstrate with individual youth the possibility of providing continuous care and executing appropriate transfer of medical records. The process of developing and implementing a specific passport was more complicated than initially expected, due in large part to issues of confidentiality and practicality. However, examples from this study suggest that the program s aim to provide continuous care to youth was attainable. Our evaluation documented cases of prerelease health planning for youth, communications, follow-up, and transfer of medical records among facility and community providers facilitated by MHPP health advocates. In at least one case, MHPP staff successfully advocated for a participating youth recently reconfined to a DYS facility, to receive uninterrupted care from a community health provider. The program s visibility faded over the period of the evaluation. During the early phase of this evaluation, the program enjoyed relatively high visibility, related to some degree, to the several advisory committee meetings that occurred during that time and to the first health advocate s regular communications with DYS staff in facilities and in the CRCs. As the program proceeded, this initial level of communication among program partners was not sustained, which might account, in part, for the decrease in visibility. For example, during our final set of interviews, several informants indicated that numbers of youth, parents, and DYS staff were unaware of the program, or had heard of it, but were unsure of the services offered. This appears different than what was the case earlier on. Many system-involved youth who participated in MHPP reported having primary health care providers. Nonetheless, health advocates reported that many were also responsive to, and appeared to need, MHPP services. Adult informants during the needs assessment phase of this evaluation frequently reported that system-involved girls often did not have primary health care providers; these concerns were expressed about boys as well. While this is likely true for a proportion of this population, both girls and boys, our findings suggest that youth may well be more connected to care than some expect. What remains unclear, however, is the extent to which these system-involved youth have a true health care home (as opposed to a primary care physician) an entity that, similar to the MHPP model, coordinates care (including mental health services), follows up on referrals, advocates for the clients in dealings with other institutions, etc. This might be a better indicator of health care coverage for this population, and we suspect that such a gap still exists for numbers of these youth. Many of the health concerns expressed by youth, and by others on their behalf, are shared by girls and boys. Issues that affected both girls and boys included those related to sexual health; hygiene, nutrition and exercise; and mental health; however, these issues appear to aff
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