Wabanaki Generations – Addressing HIV/AIDS in tribal communities in Maine A project of GENERATIONS: Strengthening Women and Families Affected by HIV/AIDS Wabanaki Mental Health Association Maine Migrant Health Program Maine Community AIDS Partnership Opening slide, introduce speakers and project. Mention National AIDS Fund and Johnson & Johnson when giving title of program. Talk about how important it was that J&J was willing to invest in us and trust us to develop a program that built on “best practices” but which was guided primarily by community knowledge, values, and “what works” as drawn from true social marketing (listening to the audience) rather than federally sanctioned programs. Talk about the medicine wheel on the slide, what it means, how it works, and what it stands for M INE

Background HIV in tribal communities is still a hidden problem surrounded by lack of knowledge and stigma Focus on women taps into matriarchal culture in Wabanaki tribes Here we talk about why we felt this project was needed and how we came together to craft the project. This is a place to start talking about the need to engage women in HIV. At the time we thought the HIV numbers were disproportionate to the population size but they were still mostly men who were testing + There was a small men’s outreach program but little else. To make better understand the scope of the problem among the women and clear the way for the men’s program to grow, we had to make progress with the women. In our tribal communities you don’t get much done until the women, especially the grandmothers, are on board. So while the men run the tribal council and are the Governor’s in four of the five tribal governments in Maine, regardless of how the Council may vote, not much is going to happen unless that vote or that policy has the support of the women. This was brought home to us in a very vivid way during our first site visit with the TA team from CAPS and the National AIDS Fund. The meeting was held on one of the reservations and the Governor talked with us about HIV and his fear of HIV becoming a brush fire in the community and about the role of women using the example of the grandmothers guiding family discussions about reproduction and abortion. M INE

Collaborative Description Three agencies 8 days of training for outreach workers Management team: email and phone calls as needed (at least monthly) “All hands” meetings bi-monthly, alternating conference calls /in person Monthly outreach worker contact sheets We are a team Recipe for successful collaboration: everyone has something to risk, everyone has something to gain, everyone agrees to transparency, everyone shares responsibility for failures, everyone gets credit for successes, Talk about distances involved, strategies for communication and coordination, tracking activity, etc. M INE

Program Overview Capacity building with tribes in Maine Focus on women and families Goals reduce stigma bring topic into consciousness Awareness of risks & protective behaviors Talk about the type of project, the emphasis, the outcome goals (all are outlined on the slide, but give it some context) Some context to include notion of always two things going on in the community, by nature there is no heirarchy but there is a class system of sorts while they’re functioning in a shared economy… there’s no such thing as “it’s just business” because everything EVERYTHING is based on relationships. --- which is part of why one particular person was so key to helping us get started M INE

“ I have a gift for you.” M INE This slide has a picture of Sharon’s face and then we tell the story of how there were people living with HIV in the community but they weren’t public and if it was known is was a problem. When Sharon decided to go public, the virus made her the teacher and she became the messenger bringing light into the darkness, illuminating the problem and diminishing the stigma. We teach best by example, we learn best by example, she became the living example. Also good to mention here the notion of the medicine wheel and all “bad” things having good in them or coming from them as well. The notion of building on the community of women is important here as well. Sharon, through the place her family held in the community, bridging two reservations and two tribes, gave her entre’ and her personality was such that when she talked, you could hear a pin drop. The youth listened to her and the adults cared about her so her willingness, as a WOMAN with HIV in the tribe to talk about the issue and personalize it broke down a lot of barriers and helped really jumpstart a reduction in the stigma. M INE

“We are the program” Investing in the wisdom, training, capacity and empowerment of key individuals is the cornerstone of both the intervention and the transformation. This is where we talk about how there was the need for a lot of time, energy, and training at the beginning to make sure we were all grounded in the same information (American Red Cross instructor training for HIV 101, state-sponsored HIV testing, DOE Be Proud Be Responsible, CDC’s social networks DEBI, etc.). It’s no mistake who these women are or why we organized this way. The project evolved because we take cues from the community and integrate, adjust, etc. and build from there. There is a “natural way” in the community. By hiring and investing in women from within the community we were creating a sustainable model that would outlast the typical foundation funding cycles AND assure that whatever we did reflected the customary protocols. Barbara Ginley from MMHP, for example, would never have done what the Ex Dir of WMHA did she charged out into the blueberry barron to approach the lease holder and get permission to do HIV outreach in the camps. M INE

Program Features Outreach – bring messages to audience One on One Small groups Health Fairs Large Gatherings Talk about outreach in the fields, at the camps, through leaseholders, at the laudromat, in the grocery store check out line, at sweats, health fairs, etc. Emphasize importance of testimonials and story telling. Explain about the focus on vocal communication rather than posters or brochures (though we had those too) M INE

Program Features Strategies Education and information Testimonials and storytelling Counseling and testing Referrals This slide has a photo of Donna, one of our outreach workers who is a traditionalist and tribal elder. This is a good place to offer a story about how we do the work, such as the different people playing off each other at health fairs (people at table, testing in back rooms, circulating people engaging with folks 1x1, etc. This is also a good place to talk about the collaboration with DEAN and RMCL for connecting with testing before we started doing our own testing, for additional person power at camps and group events, and for case management access for anyone who screens positive. We didn’t start out with an intention to do testing. Training the outreach workers to also do C&T was a response to outreach worker feedback and, frankly, an “added value” for the women themselves in that it added to their skill set and marketability, not to mention local credibility. Talk here about Patty and how the health center director wants to have her there on the res to do testing because of the confidentiality issues within the health center. M INE

Program Sites Laundromats Grocery Stores Raker Center Campfires Blueberry Barrens Health Fairs Camps Gatherings Social Networks Senior Centers Boys & Girls Clubs People’s Homes Community Kitchen Methadone Clinics Schools Link to “we are the program” because the idea here is to build capacity in the tribes so that HIV conversations can take place wherever and whenever, as opportunities appear, in addition to situations we create (e.g. at socials). Never under estimate the power of a woman in the community just because she may not have a title. As you finish here, talk about how to track capacity and outcomes in this kind of capacity building project – basically that there are some challenges. M INE

Evaluation Description Process Measures Number of events, contacts Number of tests, referrals Feedback from Champions and community leaders Instances of community initiated contact Speaking of those activities and keeping track of things, it was hard to do. We spent quite a bit of time over the past 2 years trying different ways to successfully measure activity – e.g. “what is a contact” and then how to capture the information in ways that were unobtrusive, would work in the field (literally), and didn’t ask too much of us a people from a culture in which what is written is less important than what is said. If this is a longer presentation, take time to talk abou: * Feedback from champions and women with HIV that it’s working, that they feel less stigma, etc. * Examples when the community came to Patty to help with the kid in the camp who had slit his wrists in the common building and about the community coming to Patty to talk about what was happening with the woman who was HIV+ and wasn’t being safe and them demanding that she help solve the situation (and the intervention we did, if there’s time) M INE

Contacts Outreach Contacts: 1x1 = 232 17 Groups = 220 8 Gatherings = 300 Testing = 160 women Exposure to information =>1,000 additional people Total: , which may seem small, but remember that we a) spent much of the first six months getting everyone up to speed, getting to know one another, etc. then we b) threw out some of the early ones that we later decided didn’t meet our definition of a true contact AND that c) the entire universe of potential contacts of tribe members in Maine is a little less than 12,500 people. 1x1 = 164 13 Groups = 122 people 6 Gatherings = 250 people Tested = 44 women THESE NUMBERS NEED TO BE UPDATED !!!!! I THINK THESE NUMBERS ARE THROUGH NOV OR DEC OF 2006. M INE

Findings Eventually, we were welcomed Indigenous and ingenious outreach generated large volume of testing Stigma has gone down Issue awareness has increased Collective acceptance in community This is a summary slide, you don’t need to spend much time here but you can talk about how surprised we have been at how open people have been to testing, how the people organizing the heath fairs now ask us to come compared to at the beginning when we had to call and ask if we could participate, etc. Explain about process measures. M INE

Lessons Learned Invest in training and team building Hiring / Staffing decisions are key HIV+ women willing to speak Traditional healers for outreach and education encounters Part time / Full time doesn’t matter because eventually they’re always working because they become community resources The key message here is that the project works not because of some CDC approved DEBI but because we listened to our people and invested in out reach workers who are already recognized leaders in their communities. Talk about the importance of having Sharon Paul as a respected HIV+ person who was willing to go public and in so doing break through the denial. Talk about having a mix of champions, outreach workers (e.g. Patty), and traditionalists and how key it is to have that mix in order for it all to work. M INE

Reflections Senior Center “How do you build trust” Stigma, capacity Evolution This is another place to tell stories and use up time if it’s a longer presentation. If it’s a short presentation allude to these in brief and if we have them, offer summaries. The Senior Center story is from the fall of 2006 when Miigam’agan and Sharon were at Indian Island at the senior center, the woman who came out from the kitchen to talk about her son who had died four years before, etc. and then the unexpected invitation to go next door to the Boys & Girls Club to talk with the kids about HIV (a place we’d been trying to get into for a while but which had previously rejected our overtures). CAPS and others would ask us, “How do you build trust” Trusting the people in the community, trusting the process, “white girls in the back seat,” it wasn’t that we had to build trust, it was that they had the communities trust so they didn’t have to build it. The trust that was built was us with them and there’s no doubt that strong women can work well together. Stigma is alive and well but with time you can make progress but it needs to be on their timetable, not ours. They live in small communities, there aren’t many secrets, etc. Describe Kirk Francis during the 2nd NAF site visit with CAPS at Indian Island. Finding the right “community guides” is essential and worth the upfront time. “Adapting” our own way of operation our own expectations -- Normative was native not white. Cultural Competency – training we did for mental health providers; Patty participating in the statewide strategic planning for the Maine Office of Substance Abuse; inservice training for MMHP staff on white privilege that Donna presented on; Sharon and Tara presenting in Ct. as a follow up to the minority health conference with a group that had heard us at the conf re native culture, HIV and substance abuse prevention. M INE

Thank You Donna Augustine Sharon Paul Patty Neptune Mulian Dana Sharon Tomah Stephanie Brady Barbara Ginley Miigam’agan Kate Perkins Lauren Stevens Amy Joseph RMCL DEAN Jill Devereaux

Wool-lun-kay-uzz Take good care of yourself Wabanaki Mental Health 207-990-0605 www.wabanaki.org Maine Migrant Health 207-622-9252 www.mainemigrant.org MCAP 207-622-7566 x225 www.maineaids.org This photo is Lauren Stevens in the summer of 2006 with her father at a tribal gathering. The focus here is the “take good care of yourself” message and point out that people are welcome to contact us. M INE