Building on Strengths: A School-Based Mental Health Program
OLGA ACOSTA PRICE, JODIE FISHMAN, AND MIMI V. CHAPMAN
A TROUBLED STUDENT WITH A TROUBLED PAST
Juanita, a 12-year-old seventh-grader in middle school in New City, Mississippi, was once again in in-school suspension (ISS) for being disruptive in class, fighting with other students, and refusing to follow instructions. School administrators and staff admitted frustration at Juanita’s behavior, and her classroom teacher was overheard saying, “There are rules in place and she just has to learn to follow them, period.”
By design, the ISS classroom had an open section and a section with cubicles where students were restricted from seeing those around them to help students concentrate on schoolwork they were supposed to be doing while in the ISS classroom. This particular setting, however, was triggering potentially traumatic memories for Juanita.
Juanita frequently mumbled, “I hate it here. I wish everyone would leave me alone.”
Juanita and her mother came to the United States in June of 2009 from a small, poverty-stricken town outside of Mexico City, Mexico. Juanita’s mother wanted to give Juanita a better life, and even a low-wage job in the United States would provide a much better standard of living than they were used to in Mexico. Juanita’s mother had a first cousin living in New City, Mississippi. She heard there was a large community of Mexican immigrants already living there and work was plentiful.
The lure of a better life convinced Juanita’s mother to use a coyote to smuggle her and her daughter illegally across the border from Mexico to the United States. While making this journey, Juanita and her mother were subjected to living in tiny spaces, fed only rice and water once a day. They saw several fellow illegal immigrants die of dehydration. Juanita was left alone more than once in the small confinement and when her mother was returned to the space by the coyotes, she did not talk about what happened; Juanita felt a huge distance from her mother.
Having spent all their money on the coyote, when Juanita and her mother reached New City in June, they moved into a small apartment with cousins. Juanita slept on the floor next to the couch where her mother slept. Juanita’s mother worked at the local chicken processing plant, but rumors abounded that the plant would close any day. Juanita attended school, but she had a rough adjustment; she had no friends there and struggled to understand the expectations of her new teachers. She was lonely, frustrated, and angry that she had to leave everything familiar to her.
A PROBLEM STUDENT, OR STUDENT WITH A PROBLEM?
As part of an externally funded, school-based program called Building on Strengths, a school-family liaison, a Latina immigrant, was able to help Juanita. The liaison talked with Juanita about school and the ISS classroom in which she often found herself. Juanita explained being in the cubicle in ISS brought back painful memories of being in the confined space during her “importation” to New City.
“I start to remember that time when my mother and I were with the coyotes and I can’t get those thoughts out of my head,” Juanita complained.
“Why didn’t you mention this to anyone before?” the liaison asked.
“I don’t think the teachers care,” said Juanita, “and they don’t speak Spanish anyway, so it is hard for me to explain it. I just don’t feel comfortable talking with them.”
School staff members admitted they often did not know what their students and their families had been through and were not always aware of the symbolism of their own actions. The school-family liaison spoke first to the school principal, explaining Juanita was likely expressing retraumatization. Although she was not experiencing a true flashback, the ISS experience was triggering potentially traumatic memories. The principal agreed in-school suspension was not productive for Juanita.
The Building on Strengths program allowed the school-family liaison to help change the ISS, as well as work with Juanita and her mother to further address the traumatic experiences in their past. The liaison completed an intake with Juanita and her mother to better assess their mental health needs, and they were referred to Nuestra Comunidad, a community mental health clinic in their area to facilitate their adjustment to New City. Juanita’s mother was connected to county-funded social services to assist her with learning English and to explore other employment opportunities. She also indicated she was willing to participate in a parent night event after learning that she would meet other parents in similar circumstances.
BUILDING ON STRENGTHS
The Building on Strengths program represented a partnership of the school district, two local public schools, the State University of Mississippi School of Social Work, and Nuestra Comunidad, a bilingual and bicultural community mental health center. The 3-year program started in 2007 and was funded through a private foundation for $100,000 per year. The first year focused on launching the program, while the second and third years were dedicated to program implementation.
The goals of Building on Strengths were to create a system of care with an emphasis on early identification of emotional and behavioral problems through the use of a liaison or cultural brokeri and to improve services for immigrant Latino children and their families by reducing barriers to access. The program plan included diversity and cultural competence training for school staff, training for parents about youth mental health issues, and training to enhance mental health knowledge for teachers and staff. The program conducted a number of parent night events every year, attracting an average of 30 Latino parents at each meeting, a significant increase over previous attempts to bring parents together at the school. The meetings included information on school processes and expectations, resources available to parents and their children, and preliminary discussions of typical stresses children face adjusting to life at a new school. Postmeeting feedback indicated parents were satisfied with these events and found the information useful to their lives.
Building on Strengths offered school-based mental health services at James Middle School and Larson High School, two schools in New City with a high percentage of Latino students. A Latina school-family liaison was hired and assigned to the two schools to serve as a cultural broker and to provide limited direct clinical services as well as referrals to other agencies for specialized services. Building on Strengths’ grant funding fully supported the liaison’s salary, although she was employed by Nuestra Comunidad and supervised by its staff. The liaison was a qualified mental health provider who was well liked by the community and earned credibility among parents and educators alike. She provided consultation to teachers and school staff on issues that were interfering with student academic progress, identified students with signs of mental health problems, engaged families in creating solutions and action plans for their children, and advocated for students and families, especially those who were Spanish-speaking and unfamiliar with the American public school or mental health systems. Individual students were assessed to determine the extent of their emotional or behavioral needs, and referrals were made to Nuestra Comunidad for youth with significant mental health conditions. A 16-week evidence-based counseling group was started in the third year of the program in both schools to try to improve the skills necessary for regulating emotions and behavior among 12- to 18-year-old girls. The group demonstrated positive behavioral outcomes among its participants.
NUESTRA COMUNIDAD: MEETING MENTAL HEALTH NEEDS THROUGH COMMUNITY
A coalition of psychiatry residents, members of social service agencies serving Latinos, and primary care clinicians founded Nuestra Comunidad, which is Spanish for our community. This group united around a mutual concern about the unmet needs of Latinos with behavioral health problems. Nuestra Comunidad incorporated in November 2004, received its first grant in the spring of 2005, and saw its first clients in November 2005. The organization had a staff of six employees and four trainees, all of them bilingual. Nuestra Comunidad described its mission as providing, in collaboration with consumers, university partners, and local, state, and national agencies, best practice mental health and substance abuse treatment and resources for the under-served Latino-Hispanic population of Mississippi in collaboration with consumers and local, university, state and national agencies.
Based in Carter, Mississippi, Nuestra Comunidad opened a second office in New City in July 2006. Approximately 78% of Nuestra Comunidad clients had incomes below the federal poverty level; 65% of clients were uninsured, and another 28% were insured by government programs such as Medicaid and Mississippi’s Child Health Insurance Program. The agency was able to seek reimbursement through Medicaid for the clinical services offered (i.e., individual, group, and family therapy) but public funding did not support the outreach and early intervention services provided by the liaison, so those efforts were supported via a private grant. Although Nuestra Comunidad was committed to the prevention and early intervention goals of the Building on Strengths program, its staff were concerned about how to support these activities after the private grant ended.
RISK FACTORS FACING LATINO YOUTH IN THE UNITED STATES
Although local data on Latino youth are scarce, national research on young Latinos indicates cause for worry. Latino youth are engaged in behaviors and situations that put them at increased risk for mental health difficulties or may be symptomatic of existing, untreated mental illness. Information from the Youth Risk Behavior Survey2 shows higher percentages of Latino youth report carrying weapons to school, and a higher prevalence of drug and alcohol use than other youth their age; over 11% of Latino students report they did not go to school at least once in the last 30 days because they felt unsafe, a proportion higher than any other ethnic group. Other studies have found Latinos experience higher rates of physical and sexual abuse than either black or whiteii adolescents.3 Further, Latina girls have the highest incidence of suicide attempts compared to girls from other groups.4 To complicate the picture, about 35% of Latino adolescents nationally report being sexually active, yet they are less likely than their white or black counterparts to use condoms or birth control to prevent pregnancy or sexually transmitted diseases.6
These risk factors have been associated with poorer academic and economic outcomes. Latino youth are less likely to complete high school, are more likely to drop out of school, and fare worse on educational achievement tests than their white counterparts.7 These phenomena also hold true for students enrolled in the New City public schools. Local estimates are that more than half of the 1,500 self-identified Latino students enrolled in school (of the 7,400 students in the school system) have some type of mental health need, but only 3–5% are accessing services in the community. The stigma associated with receiving mental health care is one barrier, with public sentiments of being “crazy” hindering efforts to seek professional help. In addition, service utilization data from the local public mental health agency show that three times more whites and five times more African American residents are served in community mental health agencies in New City than Latino residents, even though the mental health needs are thought to be as significant, if not more so, for Latino immigrants. Focus groups conducted with local Latino adolescents found that the majority of participants reported incidents of discrimination and that, although they would welcome support to address their family’s mental health needs, they do not know where to go or whom to trust.
MIGRATION TO NEW CITY, MISSISSIPPI
The rapid influx of immigrants to New Cityiii meant Juanita was not the only Latino student in the school identified with behavioral and academic problems. In the decade between 1990 and 2000, the Latino population of Mississippi grew 394%,8 primarily due to booming construction and the proliferation of low-wage jobs. Since the 1990s, New City had seen an influx of Spanish-speaking immigrants due to an abundance of jobs in the chicken-processing industry, with the majority of the new residents being undocumented immigrants. According to 2000 census data, Hispanics of any nationality comprised 39% of the population in New City, a small, rural, and high-poverty community in Mississippi. The median income for a household in New City in 2000 was $33,651.
New City is not an isolated case. Southeastern states have some of the fastest-growing populations of Latino immigrants in the United States. Educators in particular have been caught by surprise at the demographic changes in their classrooms, with the proportion of Latino K-12 students in the South increasing from 5 to 17% from 1972 to 2004 and the rate of English language learners in the state skyrocketing by more than 300%.7 The rapid growth and the lack of empirical data about these new arrivals have left schools and other youth-serving organizations to create interventions in an ad-hoc fashion. In particular, there is a significant lack of cohesive information about the social, behavioral, and academic needs of Latino immigrant youth ages 12 to 18 years, most of whom are U.S. citizens but whose parents are not. The burgeoning Latino population has created additional challenges around service delivery, including the poor provision of mental health and social services due in large part to the limited number of bilingual or bicultural providers. Agencies in and around New City, such as county social services, juvenile justice, and child welfare agencies, have tried to adjust to the changing demographics but these institutions have very specific criteria for inclusion in their services and were able to engage only a small segment of the population given their restricted mandates. Additional groups, such as other community mental health providers, psychiatric service professionals, and mental health advocacy groups, remain limited in their ability to respond to the increase in service needs due to the lack of qualified bilingual staff available to work with Latino families. The board of commissioners and the merchants association are also supportive of efforts to expand services but have little ability to shepherd resources toward this needy population.
Latino immigrants in the New City area face a number of barriers to successful acculturation, especially the significant number who are undocumented. New City can be described as moderate politically, but the surrounding counties are socially and economically conservative. The poverty and unemployment rate in and around New City contributed to a growing schism between those who believed dwindling public resources should only be available to citizens of the United States and those who felt that helping all in need ultimately benefits the entire community. Although significant coethnic communities have been developing, the native population is ambivalent about new Latino immigrants. Some communities reached out to the newcomers, welcomed their business, and hired them for previously abundant low-wage jobs, while other factions reacted with open hostility and aggression about the unfair burden on public institutions and the overuse of social services by illegal residents. Their anger was fueled by the growing number of non-Latino families unable to identify qualified mental health providers who could see their own children. This was due, in large part, to the statewide mental health reform that included privatization of the mental health system. Privatization created some efficiencies but also made accessing mental health care much more difficult for many people, both citizens and noncitizens.
When the migration to New City began in the mid-1990s, national anti-immigrant speakers were brought in to rally residents to protest their presence. Across the state, there was continuing debate around higher education opportunities for immigrant youth who were undocumented but educated in the state’s public schools and whether they should be eligible to attend the state’s 4-year and community colleges. Outspoken advocates for new immigrants received death threats and some required FBI protection. Anti-immigrant sentiment in the community and across the state complicated advocacy efforts to create seamless networks of support for vulnerable families. Media stories highlighted accounts of local raids that resulted in detention and deportation of many adults, leaving parents fearful of venturing from their homes and students anxious that they would not see their parents upon returning from school. In addition, service providers, ranging from public schools to mental health agencies, struggled to find teachers, therapists, and other professionals who were able to simply communicate in Spanish, much less provide culturally appropriate services.
A number of community advocates suggested that a public awareness or social marketing campaign highlighting the benefits of population-based prevention strategies would do wonders to help shift public opinion. Such a strategy had been used with some success in this region around other social and health issues, such as the prevention of HIV/AIDS, teen pregnancy, and domestic violence. Yet, sentiments towards the growing immigrant population were particularly charged, and everyone in New City was aware of the ever-increasing community divide. Local business owners warned that if law enforcement officials continued to deport undocumented immigrants, their businesses would suffer and New City itself would be economically devastated. But other realities led program leaders to be cautious. The fight over dwindling mental health resources added to the tension. Accordingly, publicity about programs that provided mental health services to new immigrants were thought to be particularly ill advised. The general sentiment among residents, advocates, and legislators of New City was that assistance to immigrants, especially undocumented immigrants, was successful only when provided “under the radar.” The demise of any helpful policy or program would be assured when brought into public view and scrutiny, resulting in widespread controversy. The exception was the advocacy conducted by a few pastors or other religious leaders who were respected by the community at large and unlikely to be vilified for their support of the disadvantaged.
ADDRESSING CULTURAL COMPETENCY
James Middle School and Larson High School both employed only one school counselor and one school social worker, neither of whom spoke Spanish. Thus, a substantial responsibility rested on the shoulders of the school-family liaison funded by Building on Strengths. How could one liaison reach all of the vulnerable Latino students? Should she even try to identify every student’s needs knowing qualified mental health care might not be consistently available?
Thus, another Building on Strengths initiative centered around classroom-based consultation and skills training offered to teachers. Program staff believed this might prevent the constant flow of students exhibiting behavioral problems and being referred to ISS.
Like many school systems, the New City school system participated in numerous cultural competency initiatives in the past with the goal of creating a climate that welcomed diverse student populations. However, many of these programs focused on specific instructional techniques or descriptions of particular groups that inadvertently reinforced stereotypes or the notion that members of certain groups were completely defined by their cultural background. Expected changes in teacher and staff attitudes were, therefore, not realized. The school system invested heavily in improving language access for Latino students and families. As a result, the number of English-as-a-second-language teachers increased across the school district (from 3 to 28), more interpreters were hired, and bilingual hotlines were created. Yet, school leaders acknowledged that the majority of school staff could use ongoing cultural competence training to adequately address the education and health needs of Latino families and children.
Building on Strengths program staff conducted cultural competency training for 20 teachers, staff members, principals, and district-level administrators in August of 2007. The innovative curriculum was more intensive and contributed to the development of insights about personal biases and discrimination that affected participants in a deeply personal way. Participants were vocal about the impact of the training and their newfound investment in initiating changes that would improve the climate of their schools. The challenge was to keep that initial work moving and spreading throughout the two target schools and the larger school system. The main barriers were scheduling and funding. The 4 teacher training days per year were largely scheduled to conduct mandatory activities, leaving little room for additional training or dissemination of nonacademic information. After-school times were problematic because teachers and staff are involved with sports teams or school clubs and union mandates required overtime pay for activities falling outside of regular school hours.
STORIES OF CHANGE
As the program was implemented, the James Middle School principal expressed some ambivalence about the program and the services offered. His concerns grew about how much time students might spend out of the classroom and away from academic instruction, whether teachers would be asked to take on new roles or responsibilities, and how much flexibility the liaison would request around the interpretation of mandatory school policies and procedures. The principal’s reluctance to embrace the program caused worry among program leaders who knew that school leadership support would be critical to the success of this school-based mental health program.9 Teachers were unsure at first whether referring students to the liaison would prove beneficial, but, after several months, decreases in classroom disruptions and increases in time spent on academic instruction confirmed the value of the liaison’s support. After hearing the positive anecdotes from the teachers, the principal conceded that allowing the liaison to see students individually and having his staff participate in cultural competence training would likely benefit his staff and help keep students out of ISS. He became convinced that gaining a better understanding of the differences in learning and communication among immigrant children and the impact of trauma and loss on classroom behavior would likely improve teachers’ patience, empathy, and effectiveness.
Accordingly, the principal let the Building on Strengths project director know that he was ready to expand programming. However, he also had some barriers to overcome. When past school budgets provided more plentiful resources, principals and the school board had been willing to help subsidize programs for students and families and to fund nonacademic skill development for teachers and staff. Unfortunately, the school budget no longer allowed for that level of generosity. An additional challenge remained about how to identify days and times that school staff could participate in this training since professional development days were already committed for the year.
LIMITED DATA AND ORGANIZATIONAL CHALLENGES
Building on Strengths was entering its last 6 months of funding. Additional organizations (social service agencies, community groups, churches, mental health providers, and advocates) were interested in the physical and mental health needs of newly arriving Latinos and had a brief history of providing services to this growing population. Despite this interest, program leaders had a difficult time forming an advisory committee for the project, and time constraints and political concerns had limited strategic efforts to increase program visibility among potential partners. Although some efforts were made from the beginning of the funding period, existing partners were unable to secure commitments internally to continue services beyond the grant due to the fiscal instability within most organizations. Yet, all agreed that continuing to build broader community and system-wide connections to the program would be beneficial.
There were some university-based resources and supports available to collect and analyze data for the program, but early data collection efforts were problematic, and information collected was unreliable. There was an underdeveloped evaluation plan guiding program evaluation efforts, and no information technology system was available to improve the quality of data collection. The private funding acquired to support the program was not sufficient to invest in a more rigorous evaluation of the main program components. Advisors to the program strongly recommended that additional attention to monitoring the impact of program activities was necessary to successfully secure future funding. Yet, given the day-to-day pressures facing program leaders, resources and time allocated to evaluation were almost nonexistent.
The lack of comprehensive data about positive outcomes associated with the program put willing supporters at a disadvantage. The two school principals in particular, who were beginning to see the changes at the classroom and school-wide levels, were interested in advocating for funding to the school board and the superintendent’s office, but the ever-increasing demand for accountability and results made them reluctant to champion a cause with little evaluation information. Stories of change were accumulating, but teachers were nervous about sharing them for fear of political retaliation in their community, and parents were frightened their testimonials would bring them to the attention of immigration and law enforcement officials.
Juanita’s mother had a powerful story to tell about the help she and her daughter received through the program and the impact it had made in their lives in New City, but her fear of deportation forced her silence.
On the heels of learning that the school principal was finally interested in taking full advantage of the various components of the program, the project director of Building on Strengths received disheartening news that funds for the project were running low and decisions needed to be made about which aspects of the program could be retained. The sustainability of the program’s hard-won accomplishments was at risk.
AT A CROSSROADS—THE CASE SCENARIO
After working in the school system for 2.5 years, Building on Strengths acquired a quiet, but loyal, following of supporters. The program made progress toward its goals, but the project director, whose time was not fully funded through this project, was often conflicted about what to prioritize and how to build public support for what some considered a controversial program. Long-term sustainability plans for the program seemed to rest on the leaders’ ability to explore opportunities among private and public (as well as local and national) funding sources, but program implementation and management took precedence.
The economic recession, which had an impact on the entire country, hit New City particularly hard in 2009. The chicken processing plant was scheduled to close entirely within months, which created a great deal of anxiety among workers and community leaders, as well as elected officials. Latino students and their families faced the likelihood of increased hardship with few places to turn for reliable support. Nuestra Comunidad was not spared the blow of the economic downturn. The agency relied on public financing for its operations, and those dollars were drying up, so the director of the community mental health agency decided to cut programming and release core mental health staff. The tension felt in the community and within homes fueled anxiety among children and youth who had no control over the social and economic circumstances affecting them. These stressors contributed to an increase in the number of behavioral and academic difficulties demonstrated by students across a number of classrooms.
Building on Strengths was forced to reduce its third-year financial commitment to Nuestra Comunidad so that only 40% of the liaison’s time was covered by project funds. The majority of the budget supported staff—the cultural liaison in particular, as well as a small percentage of time for her supervisors at Nuestra Comunidad and for the project director overseeing the entire project. Moving forward, the liaison would need to supplement her salary by billing Medicaid for clinic-based treatment services outside of her responsibilities in the schools. The project director was informed by the project’s accounting office that $25,000 was available for the remaining 6 months of the grant, half of what was expected at that point in the budget cycle. Building on Strengths leadership needed to decide how to meet program objectives, cover expenses, and prioritize limited time and scarce resources. With the end of the school year looming and the grant ending, time was of the essence.
1. What aspects of the Building on Strengths program are most important to preserve in light of impending funding cuts (i.e., training parents, cultural competence training for teachers, providing direct services, improving data collection and evaluation, focusing on partnership development, engaging in antistigma campaigns, etc.?). What is the rationale for this choice? What critical stakeholders should be involved in the planning, implementation, and evaluation of these program components? What additional information does the project director need in order to make this decision?
2. What other sources of funding or strategic actions could the project director engage in to help sustain this school-based mental health project beyond the grant? What program elements are most important to continue, especially given the absence of a strong organizational infrastructure? What cultural and political challenges influence the existence and expansion of such a program?
3. What other partners or advocates should the project director enlist for help? How could Building on Strengths utilize parents and community members more in the development and sustainability of its program? What barriers to engaging immigrant parents (both documented and undocumented) might they encounter, and how can they address these challenges?
About the Authors
Olga Acosta Price, PhD, is director of the Center for Health and Health Care in Schools, a national resource and policy center committed to building effective school health programs. Dr. Price is currently managing a Robert Wood Johnson Foundation-funded program that addresses the mental health needs of children and youth from immigrant and refugee families. She is an associate professor at the School of Public Health and Health Services at The George Washington University in the Department of Prevention and Community Health.
Jodie Fishman, MPH, helped develop this case study as a culminating project for her master’s of public health degree, which she received from The George Washington University in May 2009 in maternal and child health. Mrs. Fishman currently lives in Seoul, Korea, where she runs a Chlamydia education, screening, and surveillance program on an army base for the U.S. Defense Department.
Mimi V. Chapman, MSW, PhD, is an associate professor at the University of North Carolina at Chapel Hill School of Social Work. Her research and teaching focuses on child and adolescent mental health, in particular the needs of new immigrant youth and youth involved with child welfare.
1. Jezewski MA, Sotnik P. (2001). The Rehabilitation Service Provider as Culture Broker: Providing Culturally Competent Services to Foreign-Born Persons. Buffalo, NY: Center for International Rehabilitation Research Information and Exchange. http://cirrie.buffalo.edu/monographs/cb.php. Accessed October 9, 2009.
2. Centers for Disease Control and Prevention. YRBSS: Comparisons between state or district and national results, 2009. http://www.cdc.gov/HealthyYouth/yrbs/state_district_comparisons.htm. Modified June 7, 2010. Accessed March 29, 2011.
3. Tienda M, Kleykamp M. Physical and Mental Health Status of Hispanic Adolescent Girls: A Comparative Perspective. Princeton, NJ: Office of Population Research, Princeton University; 2000.
4. Zayas LH, Pilat AM. Suicidal behavior in Latinas: explanatory cultural factors and implications for intervention. Suicide Life Threat Behav. 2008;38:334–342.
5. Office of Management and Budget (OMB). Revisions to the standards for the classification of federal data on race and ethnicity. http://www.census.gov/population/www/socdemo/race/Ombdir15.html. Published 2003. Accessed November 4, 2010.
6. Abma JC, Martinez GM, Mosher WD, Dawson BS. Teenagers in the United States: Sexual activity, contraceptive use, and childbearing, 2002. National Center for Health Statistics. Vital Health Stat 23 (24). http://cdc.gov/NCHS/data/series/sr_23/sr23_024FactSheet.pdf. Published 2004. Accessed March 3, 2010.
7. Kohler AD, Lazarin M. Hispanic Education in the United States. Washington, DC: National Council of La Raza. http://www.nclr.org/content/publications/download/43582. Published 2007. Accessed October 13, 2009.
8. U.S. Census Bureau. Estimated national demographic components of change: April 1, 2000 to July 1, 2001. http://www.census.gov/popest/archives/2000s/vintage_2001/US-2001EST-02.html. Published 2001. Accessed June 10, 2009.
9. Acosta OM, Tashman NA, Prodente C, Proescher E. Establishing successful school mental health programs: guidelines and recommendations. In: Ghuman HS, Weist MD, Sarles RM (eds). Providing Mental Health Services to Youth Where They Are: School and Community-Based Approaches. New York, NY: Brunner-Routledge; 2002: 57–74.
Although this case is based on a real project, the names of individuals, schools, and locations have been changed to protect the confidentiality of those involved. In addition, some of the issues facing the project have been added for teaching purposes.
i An individual who engages in the act of bridging, linking, or mediating between groups or persons of differing cultural backgrounds for the purpose of reducing conflict or producing change.1
ii White refers to an individual who identifies as a member of the white race and is not Hispanic or Latino. Hispanic or Latino is a term used by a person of Cuban, Mexican, Puerto Rican, Cuban, South or Central American descent, or other Spanish culture or origin, regardless of race.5
iii Statistics provided are for a state within the United States but are not necessarily reflective of the demographics of Mississippi.
The Strategies to Overcome and Prevent Obesity Alliance
ERICA BREESE, CASEY LANGWITH, CHRISTINE FERGUSON, GINAMARIE MANGIARACINA, AND ALLISON MAY ROSEN
A WEIGHTY ISSUE
Imagine a disease that affected two thirds of adults in the United States, with a prevalence that had doubled in the last 25 years and showed no sign of stopping its upward trend. One would expect any disease this widespread would receive national attention both in the media and policy arena. Policy makers would demand insurance coverage for treatment and prevention. The public would actively protect themselves and their families from contracting the disease or seek treatment if they contracted it. Physicians would screen for the disease regularly and have straightforward conversations with those who contracted the disease. The American public health and medical systems would be geared toward treating and preventing further spread of this disease.
Surprisingly, there is a disease that currently affects two thirds of the U.S. population, yet has not received the expected response. In 2009, 66.4% of the adult population in the United States was overweight or obese (body mass index ≥ 25),i which is more than twice the prevalence rate from 3 decades before.1,2 Adults are not the only ones affected; childhood obesity rates have also tripled in the last 30 years.3 Additionally, if the existing rates of increase continue, 86.3% of U.S. adults will be overweight and 51.1% will be obese by 2030.4 These are staggering numbers for any health condition, but especially one that is related to a multitude of chronic diseases, such as diabetes, hypertension, high cholesterol, stroke, heart disease, certain cancers, and arthritis.5 Beyond the individual health risks, overweight and obesity also contribute to increased health costs, both nationally and for individuals. For example, in 2008, medical spending attributable to obesity was estimated to have been $147 billion, accounting for 9.1% of annual medical spending.6
These statistics show obesity plays a major role in the U.S. healthcare system and affects the lives of millions of Americans. However, despite the extreme prevalence of obesity, the disease often does not receive adequate attention in the healthcare community. In 2010, First Lady Michelle Obama launched her Let’s Move campaign, which aims to reduce childhood obesity within a generation, helping to bring the issue of childhood obesity to the forefront. In contrast, adult obesity continues to garner little interest. Some groups, however, are focusing on this often overlooked area because they believe real change can be made. The Strategies to Overcome and Prevent (STOP) Obesity Alliance is a collaboration of consumer, provider, government, labor, business, health insurance, and quality-of-care organizations united to drive innovative and practical strategies that combat obesity. The alliance’s history is unique, demonstrating how partnerships among public relations teams, public health researchers, business and labor leaders, advocates, and the private sector can work together to make important changes.
In 2006, the France-based pharmaceutical company sanofi-aventis issued a request for proposals for public relations firms to help promote and improve coverage for an obesity drug in their pipeline. Chandler Chicco Agency (CCA) responded, pitching the idea of pulling together major health advocacy organizations to form a coalition focused on the issue of cardiometabolic risk. A key element of CCA’s proposal was to create an administrative home for the coalition at an academic institution, which would take the lead on generating policy research related to cardiometabolic risk. After securing the contract, the project lead at CCA, Allison May Rosen, identified The George Washington University Department of Health Policy (DHP) as a potential academic home for the coalition. CCA approached DHP professor Christine Ferguson, JD, to become program director, because of her unusual experience working in both federal and state government.
CCA believed a partnership between a healthcare public relations firm and an academic institution, such as The George Washington University, would be ideal for both the creation and maintenance of the coalition it envisioned. CCA and DHP worked collaboratively to develop the idea. CCA brought public relations expertise and knowledge of how to structure and orient the coalition to get the attention of policy makers. CCA was assisted by Mehlman Vogel Castagnetti Inc, a seasoned government affairs firm in Washington, DC. On the other hand, the team at DHP brought academic expertise and an understanding of policy making in the public and private sectors, as well as research and publishing capabilities unavailable to CCA. The strong teamwork and equality between CCA and DHP was exceptional—the groups used one another’s skills and resources to create something stronger than either could achieve individually.
Conversations between CCA and DHP initially focused on how to develop the project to address public and private policy makers’ needs, recruit member organizations, and achieve the goals outlined for the project. Cognizant of the way policy makers think about public health issues, Ferguson maintained that while cardiometabolic risk was the accurate term to describe the condition, the phrase would not resonate with policy makers or the general public. Instead, she suggested obesity was truly at the heart of the equation, and was a significant public health problem that had long been ignored by policy makers. After significant discussion, the group adopted obesity and its comorbidities, such as diabetes and heart disease, as the main focus for the coalition. They chose to name the new group Strategies to Overcome and Prevent (STOP) Obesity Alliance. Surgeon General Dr. Richard Carmona was recruited as the health and wellness chairman of the alliance to provide high-level public health visibility to the alliance leadership and steering committee members. Ferguson served as the director. The next step was to recruit representatives of influential health-focused organizations to serve as a steering committee to help direct the work.
Recruiting the organizations from a cross-section of disciplines to serve on the steering committee was a months-long process that involved identifying the organizations, setting up initial discussions, and securing official sign-offs for the organizations to join the alliance. These conversations were important to ensure the organizations understood and agreed with the overall goals of the alliance. As seen in Figure 10-1, the resulting steering committee was comprised of medical, patient, government, labor, business, health insurance, and quality-of-care organizations dedicated to changing the way policy makers think about and approach obesity. The steering committee drew members from diverse groups with an interest in obesity, including the American Diabetes Association, the American Heart Association, America’s Health Insurance Plans, the American Medical Group Association, the Canyon Ranch Institute, the Centers for Disease Control and Prevention’s Division of Nutrition, Physical Activity and Obesity, DMAA: The Care Continuum Alliance, the National Business Group on Health, the National Committee for Quality Assurance, the National Quality Forum, the Service Employees International Union, and Trust for America’s Health.
Question 1 The steering committee organizations represented groups from across the policy spectrum. What views did the various steering committee organizations bring to the alliance, and can you identify any possible conflicts between the organizations?
ESTABLISHING THE STOP OBESITY ALLIANCE
The first steering committee meeting was held in July 2007. Representatives from each of the steering committee organizations came to a daylong meeting to discuss the state of obesity efforts and barriers to addressing obesity. Unexpectedly, many of the steering committee representatives shared stories of their personal struggles with weight.
At the meeting, DHP researchers presented data from existing obesity research, focusing on three major barriers they identified. First, patients, physicians and even weight loss researchers often used unrealistic definitions for successful weight loss based more on physical appearance than health. In 1998, the National Heart, Lung and Blood Institute issued guidelines recommending obese individuals attempt to lose 10% of body weight over a 6-month period and then evaluate whether additional weight loss was needed.7 The alliance referred to medical research, which showed many health benefits of weight loss can be achieved after a sustained 5–10% weight loss.ii,8 Despite these results, a group of The George Washington University researchers found evidence suggesting many patients would consider this amount of weight loss a failure.9,10
FIGURE 10-1 STOP Obesity Alliance steering committee members (as of July 2010).
Source: Courtesy of STOP Obesity Alliance.
The second major barrier was that although medical interventions for obesity exist, there is a widespread perception that weight loss treatments do not work.11 In addition, some view medical treatments for obesity, especially bariatric surgery, as an easy way out. This attitude prevents people from seeking and receiving appropriate medical interventions. Finally, stigma toward the obese was an overwhelming driver in the way the public and policy makers thought about the problem of obesity.12 Most saw obesity as rooted in a failure of willpower and personal responsibility. The belief was that because the obese had brought the condition upon themselves, they did not deserve to receive treatment, and especially insurance coverage, for their obesity. In the meeting, steering committee representatives talked about how they saw these barriers reflected in their own areas of expertise and brain-stormed ways their organizations, both individually and as part of the alliance, could work to overcome the barriers.
Out of these discussions, the steering committee came to agreement on the following principles to guide the work of the new alliance:
1. Redefine success to be based on health rather than physical appearances
2. Encourage innovation and best practices in obesity prevention and treatment
3. Address and reduce stigma as a barrier to treatment
4. Broaden the research agenda on obesity
The alliance issued these principles publicly in 2008 as policy recommendations and have since used the principles to direct the actions of the alliance.
Question 2 While these recommendations were created specifically for obesity policy, they are also applicable to other diseases and health conditions. What other diseases might warrant similar recommendations? Are some of the recommendations more transferable than others? Which ones?
Question 3 What is the role of stigma in other conditions? Think of examples (HIV, mental health, tobacco).
Question 4 Do you think people who feel they have a connection to obesity—either personally or in their families—are more likely to be interested in the issue and accept its complexities?
ACTING AS AN ALLIANCE
The cornerstone idea in the founding of the alliance was the creation of a coalition that would operate through consensus. While the CCA-DHP team managed the daily activities of the alliance, the steering committee met monthly and was integrally involved with all the alliance’s work, including helping direct the research agenda, providing expert advice, and supporting alliance initiatives. Beyond this guiding role, steering committee members also reviewed and agreed to all publications issued under the alliance’s name. Achieving consensus among steering committee members took time but ensured the work of the alliance represented all members and did not create conflicts for any individual organization. This consensus approach strengthened the message of the alliance from the beginning. Any policy recommendation from the alliance was backed by its diverse membership body, many of whom found themselves on opposite sides of policy debates. While this variety was a significant asset for the alliance, it also forced the alliance to remain neutral on issues where consensus could not be reached.
Question 5 The alliance specifically chose a consensus governance model for its strengths, but there are weaknesses. What are the strengths and weaknesses? What other public health problems could benefit from the alliance’s model?
ACTIVITIES AND OBJECTIVES OF THE ALLIANCE
From the beginning, the alliance mainly targeted its work towards policy makers in both the private and public sectors. In order to reach this specific audience, the alliance conducted a range of research and activities about obesity. One of the key functions of the alliance was to bring together policy makers and influential stakeholders to discuss and brainstorm innovative solutions to obesity prevention and treatment. The alliance was not an advocacy organization, but instead used education and research to provide policy makers with tools to create effective approaches toward obesity and its related conditions.
During the first 3 years, the alliance hosted numerous roundtables and discussions on various topics, such as primary care, body image in the media, and the impact of obesity on women, to highlight current research and innovative practices. The diversity of research topics and activities of the alliance represented its broad membership base and message. The alliance continually stressed that all decisions must be based on the existing obesity research and evidence and worked to bring this information to policy makers. In addition, the alliance engaged in its own primary research activities in order to expand the evidence available to decision makers.
Highlights from the Alliance’s Research and Activities
To advance its goals, the alliance engaged in a number of key research, communication, and advocacy activities.
• Obesity GPS (Guide for Program and Policy Solutions): The alliance created a navigation tool to guide the development and assessment of policies aimed at addressing overweight and obesity. The Obesity GPS offers questions to consider when designing legislative or private sector initiatives focused on health, research, and clinical issues. The tool is intended to help policy makers create programs that reflect the four policy principles of the alliance. The tool was publicly released at an event at the U.S. Capitol in December 2008.
• Health Decision Makers Survey: The alliance commissioned a survey on employer and employee attitudes toward obesity. The results were published in the January/February 2009 issue of Health Affairs. The article was one of the 20 most viewed articles on the journal’s website in 2009, indicating growing interest in obesity.
• STOP Obesity Alliance E-Newsletter: The monthly newsletter provided commentary and news on alliance and member activities. In addition to the website, the newsletter was the primary way for people outside of the alliance to receive information about alliance updates. As of mid-2010, the newsletter had over 2,000 subscribers, including members of Congress and staff, federal agency representatives, healthcare advocacy groups, physicians, and academics.
• Has America Reached Its Tipping Point on Obesity? Forum: Although alliance member organizations were on opposite sides of many issues within the national health reform debate, in September 2009, the alliance reached consensus on four recommendations that should be included to address obesity within health reform. These four recommendations were: (1) standardized and effective clinical interventions; (2) enhanced use of clinical preventive services; (3) effective, evidence-based community programs and policies; and (4) coordinated research efforts. At the forum to release the recommendations, former Surgeons General Dr. David Satcher and Dr. Richard Carmona spoke about the urgent need to address obesity. The event and simultaneous webcast were attended by over 100 policy makers and health advocates. The release garnered significant media attention, including ranking as the No. 1 most e-mailed story on Yahoo! News.
• Improving Obesity Management in Primary Care Roundtable and Paper: Recognizing the significant role primary care physicians could play in addressing obesity, the alliance convened a roundtable of physicians and stakeholders in August 2009 to discuss strategies for improving the prevention and treatment of obesity in primary care. The DHP research team translated the key ideas from the roundtable into a white paper, Improving Obesity Management in Primary Care. The paper was released in March 2010 along with preliminary results from a Harris Interactive survey commissioned by the alliance on primary care physician and patient attitudes toward obesity.
• Weighty Matters: Working in partnership with the National Eating Disorders Association, the alliance convened an expert media panel in April 2010 on the depiction of weight issues in the media. The panel emphasized the impact of media on body image, the importance of portraying realistic images and weight loss stories, and the need to focus on health rather than appearance. This unprecedented collaboration was attended by nearly 100 attendees and attracted high-level media interest.
• Task Force on Women: In 2010, the alliance created a task force on women to call attention to the significant and disproportionate impact obesity has on women’s health. Comprised of 18 advocacy and research organizations, the task force identified the following four ways in which women are uniquely affected by obesity: (1) physiological, psychological, cultural, and socioeconomic factors; (2) pervasive racial and ethnic disparities in obesity prevalence and health outcomes; (3) systemic, gender-based biases portrayed in the media and encountered in educational, workplace, social, and healthcare environments; and (4) the role of women as caretakers for their families.
Question 6 These activities showcase the broad range of research topics and event types that the alliance engaged in during the first 3 years. Which do you think was the most effective based on the goals of the alliance? How might these activities differ if the alliance was targeted at the public instead of policy makers?
MEASURING THE IMPACT
Expanding the Alliance: Associate and Government Liaison Members
Since its founding, the alliance grew immensely; each year, more groups expressed interest in partnering with the alliance or becoming involved with its work. As a way to broaden its reach by engaging additional groups while thoughtfully managing growth, the alliance created an associate member category. Associate members are organizations that partner with the alliance, but do not serve on the steering committee. As of mid-2010, there were over 30 associate members. Because of the significant racial and ethnic disparities in obesity prevalence, one focus area for associate membership has been groups with ties to minority communities, including the Black Women’s Health Imperative, the National Hispanic Medical Association, and the National Indian Health Board.
Alliance leadership also saw the need for another membership category that reflected the unique position of government agencies. Called government liaison members, these members participate in steering committee meetings but do not comment on or endorse certain alliance activities, such as commenting on obesity-related legislation.
Question 7 Why were these new membership categories needed? What did the associate and government liaison members bring to the alliance?
Forming Strategic Partnerships
In addition, the alliance partnered with or supported many obesity-related initiatives, including:
• Virgin HealthMiles’ National Employee Wellness Month, 2009 and 2010
• Obesity policy forum at the Obesity Society annual scientific meetings in 2009 and 2010
• World Health Congress 2009 and 2010 obesity congresses
Beyond growth of the group, the alliance gained national media coverage for its research and sponsored events. For example, the release of the alliance’s policy paper, Has America Reached Its Tipping Point?, based on the steering committee consensus-driven recommendations for health reform legislation, received significant attention, including an op-ed piece by former Surgeons General Satcher and Carmona in The Atlanta Journal Constitution. An article on the recommendations and the event also became the most e-mailed news story on Yahoo! News. Similarly, the release of primary care survey research by the alliance garnered coverage in national news media, including The New York Times, USA Today, and The Washington Post.
As obesity gained more prominence nationally, federal policy makers included suggestions supporting the alliance’s recommendations, shifting the use of some of the work of the alliance. In 2009, the Government Accountability Office recommended the federal government provide guidance to states for the coverage of obesity-related services, such as screening and counseling, for children enrolled in Medicaid, as well as consider similar guidance for coverage of Medicaid-enrolled adults.13 Additionally, federal health reform efforts began with little support or mention of obesity, but the Patient Protection and Affordable Care Act passed on March 23, 2010, included many obesity-specific provisions, which supported alliance recommendations.
These successes demonstrated the strength of the alliance’s research. Many of the alliance’s continued achievements can be attributed to the strong partnership between CCA and DHP. Since the inception of the alliance, CCA and DHP worked as equal partners in the day-to-day maintenance of the group. Both groups participated in all planning, messaging, and research, but brought their own expertise to each decision. Loosely, CCA handled the logistical planning and messaging for the alliance; specifically, it managed press contacts, organized events, and monitored the media presence of the alliance. Conversely, DHP was the research arm of the team. DHP staff monitored research on obesity, both in policy and clinically, and engaged in and analyzed primary research. DHP brought quick and responsive research capabilities to the alliance, but also added an academic legitimacy. Despite these dual roles, all projects involved the efforts of both CCA and DHP staff. This close working relationship between CCA and DHP helped ensure that the work of the alliance was communicated clearly and effectively.
Question 8 Both CCA and DHP played important roles in the creation and maintenance of the alliance. Why were both roles necessary and how might the alliance have differed without one or the other?
When reflecting on the events that have occurred since the founding of the alliance, the leadership of the alliance identified the beginning of three fundamental shifts in the way policy makers and the public think about obesity. First, the conversation about obesity has shifted from portraying obesity as mainly an appearance issue to acknowledging its serious health consequences. Beyond the impact on health, the increasing recognition of the impact of chronic diseases on the U.S. health system has also raised the profile of obesity. Second, policy makers and the public began to realize that fighting obesity is not just about personal responsibility—it’s about creating a society where good personal choices are possible. These trends were reflected in alliance decision-maker surveys, in which many employers and primary care physicians agreed that they have a role to play in addressing obesity. Third, many started to recognize that beating obesity goes beyond simply losing weight; in fact, sustaining the weight loss may be the hardest part. This recognition is especially relevant when promoting the creation of healthy communities that support individual success for weight loss.
As obesity begins to gain more traction as a prominent health issue, the alliance hopes to help bridge the gap between the public health and health services communities. Rather than viewing obesity as a problem requiring a single approach or having a silver bullet solution, the alliance believes policy makers should focus on creating environments that support healthy choices that are easy to make, while also providing access to medical treatment for obesity.
In the future, the alliance hopes to expand its influence into state health policy by identifying barriers policy makers face when trying to address obesity at the state level. Many important public health decisions are made at the state level, so making sure policy makers understand the complexities of obesity is essential. Additionally, with the passage of the Patient Protection and Affordable Care Act, there is increased emphasis on the prevention and treatment of obesity and other chronic diseases. Alliance leadership hopes that as the federal government implements the health reform law, it will use the research findings and recommendations of the alliance to further create communities and solutions that support healthy choices for obesity prevention and treatment.
About the Authors
Erica Breese, BS, is a research program coordinator in The George Washington University Department of Health Policy in the School of Public Health and Health Services. Erica primarily provides project management support for multiple projects with the Department of Health Policy, including the STOP Obesity Alliance. In addition to project management, Erica’s work with the alliance focuses on community health centers and state-level obesity initiatives. She graduated with a bachelor of science degree in neuroscience and behavioral biology from Emory University in 2008.
Casey Langwith, BA, is a research assistant in the Department of Health Policy within The George Washington University’s School of Public Health and Health Services. Casey primarily works on the STOP Obesity Alliance, drafting research papers and conducting project management. Most recently, she has focused on developing materials, including memoranda and summary tables, highlighting the public health and prevention provisions in the Patient Protection and Affordable Care Act. Casey also works on obesity management in primary care, the economic costs of obesity, and state-level obesity initiatives, including coverage issues. Casey graduated magna cum laude with a bachelor of arts degree in sociology and history from Rice University in 2009.
Christine Ferguson, JD, is a professor in The George Washington University School of Public Health and Health Care Services in the Department of Health Policy. She has served at the highest levels of federal and state government. Her areas of research include Medicaid, state health policy and financing, federal health reform implementation, and obesity. Prior to joining the School of Public Health and Health Services in 2006, she served as commissioner of the Department of Public Health in Massachusetts; the director of the Rhode Island Department of Human Services, and counsel and deputy chief of staff to then-U.S. Senator John H. Chafee. Her accomplishments as an influential health policy maker have been recognized by Faulkner & Gray14 and by National Law Journal, which named her one of the nation’s 100 most influential lawyers. Ms. Ferguson was also named one of the top 25 most influential working mothers by Working Mothers magazine. She is a sought-after speaker and commentator and has appeared on Good Morning America, NPR Marketplace, in USA Today, The Wall Street Journal, The Washington Post, The New York Times, and various other regional news outlets and trade publications.
GinaMarie Mangiaracina, BA, has worked in healthcare public relations for more than 10 years. She joined the Chandler Chicco Agency in 2006 and is currently the team lead for the Strategies to Overcome and Prevent (STOP) Obesity Alliance. Past work at CCA has included playing leadership roles in public relations and public affairs efforts for the not-for-profit hospital alliance, VHA Inc., and the VHA Foundation.
Allison May Rosen, BS, serves on the Global Leadership Council for the Chandler Chicco Companies from its Washington, DC, office, where she provides strategic communications counsel, coalition management, and editorial services and media training for clients trying to build support for an issue, influence public opinion, or launch a brand or service. Her planning, issue framing, messaging, and advocacy development skills have been put to work for clients including the Strategies to Overcome and Prevent (STOP) Obesity Alliance; the Robert Wood Johnson Foundation Commission to Build a Healthier America; VHA, the national not-for-profit hospital alliance; and other major consumer brands and disease-specific campaigns. Previously, Allison was press secretary for the U.S. Overseas Private Investment Corporation, worked for Texas Governor Ann Richards in Washington, DC, and was an aide on Capitol Hill. Allison served as lecturer for The George Washington University Department of Health Policy chair’s seminar and regularly speaks to industry associations on communications and the media. She received her BS from the S.I. Newhouse School of Public Communications at Syracuse University.
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11. Jain et al., 2007.
13. Government Accountability Office. Medicaid Preventive Services: Concerted Effort Needed to Ensure Beneficiaries Receive Services. Washington, DC: GAO-09-578; 2009.
14. Healthcare Information Center. Health Care 500: A Complete Guide to the Most Influential Health Policy Makers in the U.S. Washington, DC: Faulkner & Gray; 1992.
i The body mass index is defined as an individual’s body weight (in kg) divided by the square of his or her height (in meters). A body mass index of 25.0 to 29.9 is considered overweight while a body mass index of 30 or more is considered obese.
ii In addition to the cited reference, see also Lavie CJ, Milani RV, Artham SM, Patel DA, Ventura HO. The obesity paradox, weight loss, and coronary disease. Am J Med. 2009; 122 (12):1106–1114. http://www.amjmed.com/article/S0002-9343%2809%2900500-2/abstract.