The workshop’s final panel session explored how to bring groups of people together to support change in communities and develop systems that will create a culture of health. The panelists, representing three of the seven winners of the 2016 Robert Wood Johnson Foundation Culture of Health prize, were Yesenia Castro, the Mid-Columbia Health Equity Advocates coalition coordinator at Nuestra Comunidad Sana/The Next Door1 in the Columbia Gorge region of Oregon and Washington; Shelton McElroy, a project manager at Metro United Way2 and a Change Makers leadership instructor at Jefferson Community and Technical College in Louisville, Kentucky; and Stephanie Co, a special assistant to the president at Beyond Housing3 in the 24:1 Community of North Saint Louis, Missouri. Following the presentations (highlights provided in Box 4-1), Jomella Watson-Thompson, an associate professor of applied behavioral science and an associate director of the Work Group for Community Health and Development4 at the University of Kansas, moderated an open discussion.
2 For more information, go to https://metrounitedway.org/servlet/eAndar.article/342/Metro-United-Way-Online (accessed March 31, 2017).
In the region of Mid-Columbia where Castro works, the demographics are majority white, with roughly 30 to 40 percent Latino, and the schools are about 65 percent Latino. Castro explained that her job is to work in the Latino community to find out what the members of that community think about the community needs assessment that was developed from the perspective of powerful leaders in the community—county officials, doctors, school administrators, and others. For example, the community assessment stated the need for more housing, so she asked her community members what more housing would look like to them. With this information in hand, the coalition that she coordinates has been able to go to the decision makers and develop a plan for working collaboratively to change policies that would facilitate the development of housing to meet her community’s needs. The stories she gathered about lived experiences from community members were critical to getting the decision makers to take the time to work with the coalition.
One outcome of this process, Castro said, was that members of the community became incentivized to be more involved in the decision-making process, to learn how to run for the school board or an elected position in city and county government, and to explore how to take decision-making positions in the community. Finding that there was no curriculum in Spanish designed to help community members learn how to get more involved in decision making, Castro and her community health worker colleagues built a curriculum, starting with translating Robert’s Rules of Order into Spanish. Soon, she and her colleagues began hearing community members say they were part of a committee or that they ran for city counselor. As a result of those anecdotal reports, Castro shifted the focus of her work to help Latinos become part of the region’s decision-making groups. She remarked that making these type of connections and doing this kind of educational outreach outside of the traditional realm of health is an important role for community health workers, promotoras,6 and health navigators. She noted, too, that Oregon’s Community Health Workers Association now offers training to certify community health workers.
Castro said that her community was proud to be recognized as a Culture of Health prizewinner, particularly being a rural community where
5 This section is the rapporteurs’ synopsis of the presentation by Yesenia Castro, the Mid-Columbia Health Equity Advocates coalition coordinator at Nuestra Comunidad Sana/The Next Door, Inc., and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
the needs are great and program staff is always thinking about what needs to be done next. However, she said that what she is most proud of is the true collaboration between the decision makers and the community that she and her colleagues have helped foster. Today, she said, community decision makers look to the area’s community-based organizations to ask important questions and actively engage community members in the decision-making and policy-change processes. One recent example of what happens when there is true collaboration has been the development of plain language training materials so that documents given to community members, including applications for programs and letters, are now understandable by everyone.
The rural community in which Yesenia Castro works is fortunate to have a newly hired individual whose title is collective impact specialist and whose job is to write grants for the community, Castro said. This is important, she explained, because he will only write grants when there are collaborating organizations participating in a proposed project, which has helped eliminate inter-organizational competition in the community.
In discussing some of the principles of engagement for recruiting members of the community to participate in group discussions and focus groups, Castro said that she gets popular disc jockeys (DJs) or radio hosts at a local nonprofit community radio station to announce meetings. She also schedules these meetings to include dinner and to be after work hours so that people have time to go home, shower or change clothes, and come to a meeting with dignity. She arranges for childcare and even provides a small stipend, particularly for focus group participation. Also important, Castro said, is always reporting back to the community. “Whatever we are asking the community to inform us on or to share stories, we always explain what the project is, what the community is doing, and then offer a space to report back on the results or whatever happened,” she said. Having clear goals for a meeting and talking about mutual benefits is an important part of the recruitment process, too. It is also important to remember, she added, to not take too much advantage of people’s time and to not expect so much from community members that they get exhausted. She said that transportation, particularly in rural areas, can be a barrier to participation and that acknowledging and discussing historical traumas is also important before starting any conversations about solutions. “Recognizing that and allow[ing] a space to heal is very important,” she said.
Castro then said that she and her fellow community health workers are also important recruiters because they are trusted members of the community. “Using community health workers that most of the time are born and raised in the community and are part of the community is such a key for community engagement of people that live there,” she said. One
technique that community health workers in her program use in meetings is known as popular education. “When we hold meetings with our community members, instead of sitting down and lecturing like you would typically do in a normal school setting in the United States, we gather in a circle where we can all see each other,” she explained. Popular education also involves asking people what they already know about the topic at hand before launching into a discussion. Doing so enables the group to address misguided ideas and information and enables conversation to build on knowledge already in the room.
Popular learning can be fun, Castro said—even for chief executive officers and doctors—and it allows people to retain more information and respect the different learning styles of individuals in a group. As an example of a popular learning exercise, Castro had the workshop participants stand and she then turned on music and threw around a “cabbage” made of green paper layered to form a ball.7 Each piece of paper had a barrier or challenge to effective community partnerships, and when the music stopped, whoever had the cabbage would peel off a “leaf” and read aloud what was on that piece of paper.
When thinking about how to invert the pyramid of power that George Flores discussed in his opening remarks to the workshop, Castro said that one question to ask is how the process is meaningfully including or excluding people who are affected. For example, a discussion about underage drinking should include teens in the community. When it comes to building relationships, she said, it is important to define clear roles and for everyone at the table to understand why they are there and what they are trying to accomplish. Humanizing the conversation with personal details is another key to relationship building, she said.
McElroy framed his presentation in terms of childhood development work that he does through the Metro United Way. He works with a lot of families in Parkway Place, one of the last two housing projects in Louisville. There, McElroy and his colleagues have been focused on trying to prepare children for kindergarten using the Ages and Stages
7 The video of Castro’s activity (starting at the 30:35 minute mark) may be found at the roundtable’s website. http://nationalacademies.org/hmd/Activities/PublicHealth/PopulationHealthImprovementRT/2016-DEC-08/Videos/Panel%203/15-Activities-Video.aspx (accessed March 2, 2017).
8 This section contains the rapporteurs’ synopsis of the presentation by Shelton McElroy, a project manager at Metro United Way and a Change Makers leadership instructor at Jefferson Community and Technical College, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
Questionnaire.9 This questionnaire, he explained, is a development tool that follows children from birth to 66 months. Parents administer the questionnaire, which in the process of doing so teaches them about and engages them in their child’s early developmental needs. The benefits of using this tool, McElroy said, have been that developmental issues, such as balance problems requiring a relatively simple medical solution such as placing tubes into the children’s ears, are recognized before they reach kindergarten, where such problems are normally identified.
Part of the process that his program goes through with parents is to have them play with their children in defined spaces, which helps parents better understand the developmental level of their small children. “We are working with parents to connect them with actual activities that are relevant to developmental milestones,” McElroy explained. Currently, 250 families are participating in the Ages and Stages project, one result of which is that 54.7 percent of children living in Parkway Place are deemed ready for kindergarten, up from 49.3 percent prior to the start of the program. He said that when the program began, there was no penetration in the community. “We thought everybody is going to want to do this with their kids, but we had to build trust in the community first,” McElroy said. To do that, he engaged advocates who live and reside in the community to knock on doors and get parents involved and remain engaged in using the questionnaire and working with their children.
Another project in the community, called Heart of Trees, has involved the community’s children in planting trees around the housing project. One 11-year-old now thinks of himself as a forester because he learned not only how to plant trees but also how to lead others to plant trees. This project came out of the community deciding to plant trees and beautify the housing project. Each tree planted, McElroy said, represents something, such as resiliency, legacy, and the future hopes and dreams of the community’s families.
Concerning the principles of engagement, McElroy discussed the importance of using language that is inclusive, not exclusionary, when conducting asset framing. Too often, he said, mission statements and requests for proposals use language similar to the following (relevant words have been bolded):
- The Center’s mission is to transform lives, schools, and troubled neighborhoods, from the inside out.
- By using a national model of a youth violence reduction and high-risk student mentoring program.
- Designed to operate in the most trouble-plagued schools in urban centers with high levels of crime and violence.
This kind of language, McElroy said, frames people as being served by a project from a deficit angle, making it harder to see people as assets. One thing that he said he likes about the Live Algoma project is that it did not talk about the community members in this manner, though he said he wondered if that was because the population of Algoma, Wisconsin, is 97 percent white. In other places, he said, it is common for programs to refer to the community members being served using terms such as “minority” and “underserved.”
McElroy said that typically there is different language used by the people doing the serving and the populations that they are serving. For example, people who are doing the serving tend to characterize themselves with labels such as
- Change Agent
Furthermore, the work that they do may be characterized as
In contrast, the communities in which residents live whom the service providers are engaging may be framed in the following manner:
- Troubled neighborhood
- Target neighborhood
- Priority zip code
- Problems of poverty
- Youth violence
Furthermore, community residents may be labeled using such words as
- Low-income individuals
- [Poor] behavior and life choices
- At risk
- High risk
McElroy stressed that he was not talking about wordsmithing. Rather, he said, it is about recognizing the value that individuals have and who they are at their core. “If I keep framing the conversation around ‘high risk’ and ‘underserved,’ I keep anchoring folks’ thoughts to actually underserving, and I create a workspace in which there is no sustainability,” he said.
McElroy shared a brief example of a provocative interactive activity that he has used at community meetings to help people to understand asset framing. He asked everyone in the room to stand and find another person who was sitting close to them, then stand in front of the person and look at them and “please tell that neighbor what’s wrong with them.” People in the room were quite unsettled by this provocative exercise.10
In closing, McElroy pointed out that asset framing is about shifting the language and rejecting narratives that denigrate people and instead using language that gets people to work together to build a better society. Instead of saying “at-risk children,” reframing one’s language could instead identify “children of promise.” McElroy said that asset framing is a struggle in the “nonprofit-industrial complex” because it is the language of requests for proposals and annual reports. “How do you release your annual report without sounding like Superman?” McElroy asked. “Nobody needs Superman. We need community. We need collaboration. That is sustainability.”
The 24:1 Community comprises 24 small municipalities totaling approximately 40,000 people that make up the Normandy School District in North Saint Louis County. Initially these small municipalities grew out of the “white flight” phenomenon, Co said. These areas had restrictive covenants and were almost 100 percent white, but over time people migrated out of the dense public housing projects in St. Louis to
10 To see McElroy’s presentation on asset framing and the group exercise (starting at the 15:31 mark), please go to the roundtable’s activity page at http://nationalacademies.org/hmd/Activities/PublicHealth/PopulationHealthImprovementRT/2016-DEC-08/Videos/Panel%203/13-McElroy-Video.aspx (accessed June 6, 2017).
11 This section is the rapporteurs’ synopsis the presentation by Stephanie Co, a special assistant to the president at Beyond Housing’s 24:1 Community of North Saint Louis, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
these communities. In 2008, the foreclosure crisis and other factors led the Normandy school district to the brink of losing its accreditation. As a result, Co said, the mayors and other elected officials of these municipalities started meeting with one another for the first time to strategize on how to work together on problems that were too large for any one of the municipalities to address on its own.
This group of decision makers invited Beyond Housing to work with them on housing issues and soon came to realize collectively that home is much more than the house in which people live—that it is about everything that makes up a thriving community. Beyond Housing and its partners developed a robust community engagement process that resulted in the 24:1 Community plan. This plan calls for the 24 communities to have a unified vision for creating a strong community, successful children, and engaged families. This plan includes a broad definition of health that recognizes that health outcomes are affected by where people live and by factors such as the availability of affordable housing, access to healthy food and affordable retail outlets, and access to good schools that provide quality education and wraparound services such as early childhood development and kindergarten-readiness programs. Responding to community input, the program has already facilitated getting a grocery store and health clinic for the 24:1 Community, Co said.
The 24:1 Community’s approach to addressing the problems, issues, and ideas identified as the partners created the community plan has been to act on them through collective impact and collaboration. For example, the Five By Age Five coalition includes advocates, community-based organizations, and daycare providers working together to ensure that all children in the 24:1 Community have access to opportunities at an early age that prepare them for kindergarten by age 5. Another coalition is involved in what Co called wraparound services and basic needs, both to address trauma and mental and behavioral health and to ensure that people have clothing and food that make a difference in a child’s success in school.
The 24:1 Community has created a few coalitions focused on more traditional health outcomes as well. The Healthy Community Coalition is a cross-sector group of youth and health organizations working to improve child wellness in the community. Initially this coalition focused specifically on childhood obesity, but it has since taken a more holistic view of health. Based on a community health needs assessment that it conducted, the coalition is now starting to expand to deal with health care access and various wellness activities.
One issue that the municipalities in the 24:1 Community face, Co said, is that Saint Louis County, where these communities reside, has not provided them with the same level of support that it has provided for wealthier areas of the county. As an example, during the time when the
county had an African-American led administration, the county agreed to fund a health clinic in the area, but after a change in administration the county closed the clinic. “Fortunately, our organization was able to fund another health care provider to come in, but that was a few years later,” Co said. “That is one example of the importance of focusing on community empowerment within the local community.” This is particularly true, she said, in cases where state or county governments may not prioritize making these types of investments in the community. “It is important to do as much as we can individually while continuing to advocate on a larger level,” Co said.
Concerning the issue of additional resources and capacities that have been helpful for her program to sustain its community health partnerships, Co said that one resource is having a backbone agency with dedicated staff that keeps the partners accountable. It is also important, she said, to create a common agenda that supersedes individual interests and the agendas of specific organizations. Having funding attached to a specific agenda, which is the case for the Healthy Community Coalition, is helpful, though everyone from the time the coalition was formed was onboard with the larger vision of creating a healthier community even without the availability of grant funding. Trust among the partner organizations and with the larger community has been an essential ingredient for success, Co added, because in the past organizations would come and go and had no permanent status in the community. Recently, Beyond Housing and the 24:1 Community have made a big investment in the community by consolidating all of their offices, which had previously been in more informal spaces such as churches, into a single headquarters in an old school building in one of the municipalities. “Even though it is a symbolic shift, it shows we are committed to this community and are not going to leave,” Co said. “We make sure the partners who come around the table are aware of this as well and make sure they are not here for a year to get some grant dollars but are really there for this larger vision.”
Co noted, as other speakers had, that every action plan must be based on community engagement and community feedback and not on some projection of what program officers think the community needs. Co added that having both short-term and long-term wins within a coalition is important for maintaining momentum. “We know we have these larger challenges on policy and build environments that we continue to work on, but we also know that having these shorter wins gets the coalitions and partners to continue to be engaged because they see some progress,” she said. One of those shorter wins was having the school district score in the provisional accreditation range, which was a major step toward the goal of regaining accreditation. This accomplishment will have a huge
impact not only on better educational outcomes for the children in the school district, Co said, but also on both staff morale and pride among community members who have stuck with the school district and worked to regain accreditation.
Co’s interactive activity for the session was an example of how to stimulate discussion on coalition forming and power sharing. Co had the workshop participants at each table discuss one of two questions. The first question asked participants to consider whom they would invite to participate in a coalition on child health and wellness in their communities. Answers included hospitals, including pediatrics and obstetrics-gynecology specialties; public health and behavioral health departments; health advocates; housing departments and homeless shelters; school districts and community college; child care providers and Head Start; community members, including youth and grandparents; the faith-based community; fire and police departments; policy makers; social services; community organizers and connectors; city planners; executive office leaders; justice system; tenant organizations; business associations; neighborhood associations; libraries; and senior citizen centers.
Co remarked how important it is to invite participation from a broad range of grassroots and community perspectives (and not just health professionals) who decide what is best for the community. Her program’s coalitions, for example, include youth football coaches, local food pantry volunteers, and a local boxing gym instructor. Getting a range of perspectives is helpful, she said, both for learning what might work and also for turning some ideas into actions.
The second question asked the audience to indicate three key ways and approaches to sharing power and ownership within the group. Answers included the following:
- Ensure that language accessibility for non-English speakers and hearing-impaired individuals is common across all activities.
- Develop group principles and a decision-making process.
- Develop a situational analysis at the beginning to ensure that everyone participates and contributes equally.
- Do not assume that all participants have equal power; reflect on individual positional power.
- Engage in group decision making.
- Invite individuals who are not like-minded to participate.
- Acknowledge the historical context to issues.
- Lead from within by defining where group members are coming from and what are their implicit biases.
- Use facilitation strategies that enable a democratic process.
- Grow a change process that redefines the roles and values of the people in power.
- Engage in processes that engender trust and participation.
- Ensure transparency in the decision-making process.
- Rotate meeting sites and hosts, and use a neutral convener.
To this list, Co added that her organization tries to share power, which at coalition meetings is accomplished by having many voices on a meeting agenda so that there is not just one organization reporting on the coalition’s activities. Subcommittees can be an important facilitator of power sharing because they can enable members from different constituencies to serve as chairs. So, too, can having one-on-one meetings so that individuals who are uncomfortable speaking in front of groups can provide input. The best meetings also have an interactive social component and food, both to get people to want to come to meetings but also to provide an opportunity for people to engage with one another and get to know people outside of their own social circles. Finally, Co said, it is important to have celebrations.
Andrea Manzo opened the general discussion by asking Castro who develops the challenges used as part of the popular education process and whether it is done collectively or by the facilitator. Castro replied that the exercises are developed through a combination of input from everyone in the room and data that may exist about challenges in the community. She noted that it is important to look at these exercises through the lens of equity and empowerment.
Anne De Biasi of Trust for America’s Health asked the panelists how they know when they have succeeded in engaging the community. The clearest measure of success, Co said, is trust. “When you feel like you can be invited to the table to work on specific initiatives from the community, that is one form of success,” she said. Echoing what Co said, Castro added that creating spaces in which community members feel safe to be and to speak up and not be afraid to ask questions or say “I do not know” is another measure of successful engagement. McElroy said that he sees success in his community when he sees leadership within the community developed and people who were previously excluded now at the table.
Shauneequa Owusu of ChangeLab Solutions asked the panelists how they mitigate or address community fatigue, given that many solutions can take a long time to develop. “How do you keep folks engaged and then pull in those who tend to fall through the cracks or are not engaged at all?” she asked. Co said that her community definitely suffered from
fatigue and that this is why she tries to avoid holding too many meetings. When seeking community input, she and other program staff may go to grocery stores and ask questions there or form community street teams that go door to door and ask people what they think about an issue. Still, she acknowledged, fatigue is a reality when there is so much to do in a community and she has no great answer to that problem.
Castro said that having the members of the community set the agenda is another way to mitigate fatigue because then the conversations are addressing the problems that are most important to them. When people are not showing up at meetings or other events, it is time, she said, to step back and ask if the project is not respecting the community. On the other hand, when meetings are well attended and people continue talking after the meeting is over, that to her is a sign of success. Recently, for example, her program received an additional year of funding, and when she announced that to community, one community member said that the program was so valued that community members would have pitched in five dollars each to keep it going.
Jomella Watson-Thomson added that having early wins and celebrating them can forestall fatigue, though she noted that getting input from the community on how it wants to celebrate those wins is important. Making the work meaningful and framing it as a way to protect the best interests of the community is another key to mitigating fatigue. McElroy said that being realistic about the pace of progress and letting the people who are putting in the effort know that they might not see the end result can help them push through the moments of fatigue.
Teal VanLanen asked the panelists if they had trouble getting system leaders to the table and, if so, if that is a problem of them not feeling comfortable. McElroy said that his approach is to create spaces where community members and system leaders come together to share a meal at round tables. He calls them network nights and said that these have changed the power dynamics of the community. These evening get-togethers have been so well received that he holds them monthly and system leaders regularly attend them.
Mary Pittman from the Public Health Institute asked the panelists how they keep their communities going when their efforts hit a major roadblock and they have to regroup and perhaps go in a different direction or invite additional voices to the table. Castro said that the result of the recent presidential election was just such an event. She had scheduled a meeting for the Thursday after the election that was going to provide a robust training on how to connect with their newly elected legislators. Instead, the community had its usual gathering with food and had the opportunity to talk about what had happened and what the community needed going forward. “Nobody knew, but we all got together and had
space to talk about how we felt on the happiest day of our lives, how they felt after the elections, and how they felt today,” Castro said. The meeting also featured several facilitators who had been involved in Oregon politics and who were able to share some of the big wins for the state. She said that while the discussion did not shy away from negative feelings about the election’s outcomes, it also raised a number of positive points, such as people registering to vote and voting for the first time.
McElroy said that he is in the middle of just such an event. His employer, Metro United Way, is a funder, not a direct contact organization, but it started Ages and Stages because nobody else was doing it and it needed to be done. Now, however, the program is in what he called a “redesign phase” in which Metro United Way is looking to hand the program off to a local nonprofit organization. For McElroy, this will mean telling the advocates he has worked closely with that they will no longer work for Metro United Way, and it may be that the nonprofit has its own people who will carry on this work. In that case, all of the relationships these advocates have built with the community will vanish. He added that he appreciated Pittman’s question because that is the nature of this work. What keeps momentum going at these times is leadership, he said. “Leadership development creates sustainability, so however it pans out, these folks are leaders. They have built their own capacity, and they can go and speak up and advocate for their community without us,” McElroy said. “That is sustainability. They do not need us.”
Phyllis Meadows from The Kresge Foundation asked a related question about the impact of turnover and what can be done besides leadership development to support communities so that they do not give up in the face of turnover. Castro replied that this is the nature of the nonprofit world, where grants come and go and funding sources can change regularly. While this is the reality and points to the importance of having good grant writers available, a program’s hard-earned momentum can be halted by the fact that different granting organizations and requests for proposals can have different deliverables and metrics. In her opinion, she said, it is the responsibility of funders to offer funding that is more long-term and more sustainable for successful programs. Castro recounted how she heard a story at a recent conference about a company that had 10 years of funding to plan for developing its next big product. “If we could do that with our communities,” she said, “I can guarantee you there would be a lot of cost savings in health care.”
One trend that Co said she saw in the wake of the unrest in nearby Ferguson, Missouri, following the police shooting of Michael Brown was that funding organizations came in with huge short-term grants and expected programs to be sustainable over too short a time. “Sometimes you have to say no even though it looks like an amazing opportunity,”
she said, because in the long run it will not move the community closer to its goals.
With regard to staff turnover, Castro said there is often high turnover among paid program leaders who usually have Ph.D.s and master’s degrees and who are looking for new opportunities that pay better. Co pointed to the importance of recognizing long-time volunteers and residents in these communities who often have more knowledge about a program than the paid staff and charging these people with being leaders.
In response to a question from Marthe Gold of The New York Academy of Medicine about whether the idea of improving the health of a community serves as a draw to bring people to the table, Castro replied that she recruits people by asking them if they want their community to be a better place, not specifically a healthier place. Co agreed with that approach, particularly when trying to get a community’s youth to the table. Once a program has some momentum, she said, then the conversation can be broadened to include health and health care. In his response to the question, McElroy noted how the Robert Wood Johnson Foundation and other funders are framing health in the broadest possible terms—something that he said he believes the community perhaps has a better grasp on than many practitioners, academics, and health system executives. The members of his community understand that health is housing and economics, and while they may not use the term “health” explicitly, they know that wanting something better for their families and their neighbors is about being healthier.
When asked if any of the panelists’ advocacy work had addressed policy change within institutions that can help sustain the positive changes their programs have achieved, McElroy discussed a specific example of doing just that. At one point, a disproportionate number of children in his community were going into the foster care system. Using a strategy developed by a mother in New York who had worked through the system to be reunited with her children and who had begun working to help other families reunite with their children, Metro United Way piloted the same approach and demonstrated that it worked. The Department of Community-Based Services eventually hired this mother and some of the other mothers and fathers who had had engagement with Child Protective Services. These department employees now walk hand in hand with families with whom they have a shared experience and help them navigate a case plan developed by their Child Protective Services officers. Nearly a decade later, that program is still heavily embedded in the Department of Community-Based Services.
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