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CHW Project Sites Gather at Unity Conference 2019

Evelyn Nicholson, Shala Perla, and Savi Bailey address CHW implementation challenges in HIV healthcare.

Community Health Workers (CHWs) from all over the United States and abroad gathered from April 14th-17th for the annual Unity conference in Las Vegas, Nevada. Known as a conference for CHWS by CHWS, Unity 2019 had over 750 people registered, one of the most attended Unity conferences since its inception. CHW project sites from the Center for Innovation in Social Work and Health (CISWH) presented their work in HIV care through poster and roundtable sessions. The Southern Nevada Health District (SNHD) team, Keanu Medina, Lourdes Yapjoco, and Merlyn Yegon, presented a poster session on their team approach to having a CHW program that focused on linking and retaining HIV-positive Latinx population in their region. Savi Bailey from Legacy Community Health in Houston, Texas, Evelyn Nicholson from the JACQUES Initiative in Baltimore, Maryland, and Shala Perla from the McGregor Clinic in Fort Myers, Florida, gave two presentations focused on implementation challenges and solutions of CHW programs in their respective sites. The CHWS shared unique challenges and shared commonalities that they experienced in integrating the CHW program at their organizations. The conference also marked the launching of the National Association of Community Health Workers (NACHW). Conference organizers and boards members gathered to light the torch signifying the launching of NACHW, an effort to unify and strengthen the CHW workforce across the nation. Unity 2019 ended with awarding the Esther M. Holderby Award to CHWs who have overcome personal adversity to promote health, for which Evelyn Nicholson from the JACQUES Initiative received an honorable mention. 

National Association of Community Health Workers Launches at Unity Conference 2019

On Monday, April 15, 2019, the National Association of Community Health Workers (NACHW) officially launched at the Unity Conference in Las Vegas, NV. The organization aims to unify the voices of community health workers (CHWs) and strengthen the profession’s capacity to promote healthy communities.

NACHW grew out of a partnership between Sanofi US, CHW leaders and allies, and Boston University School of Social Work’s Center for Innovation in Social Work & Health, and builds upon decades of previous work by CHW leaders to establish a national professional organization.

CHWs play a unique role in promoting health equity, increasing access to care, and improving health outcomes. They are particularly effective at reaching patients from low-income communities and communities of color, as they are often trusted members of these communities or have a deep understanding of them, and can serve as a bridge to services.

“We know how to talk to our communities to get them to understand the value of health,” said Wandy Hernandez-Gordon, NACHW co-chair, at the launch event. “We know how to talk to people in hospitals to let them understand that the reason [a patient] is not doing x,y,z is maybe because of where they reside. Maybe there is danger in the community and that’s why they can’t walk a long distance, or maybe there’s no healthy, quality food.”

Shala Perla, Evelyn Nicholson, and Savi Bailey present at a poster session at the 2019 Unity Conference.
Shala Perla, Evelyn Nicholson, and Savi Bailey present at a poster session at the 2019 Unity Conference.

Despite increasing interest among policy makers, providers, and payers in efforts to promote health system transformation, the CHW workforce has experienced low pay, limited job security, and lack of recognition. “We don’t just work 9-5, we work 24 hours a day, 7 days a week. A lot of us reside in the communities where we practice, and so we really needed to move forward in this effort,” said Hernandez-Gordon.

The new organization will provide professional development and networking opportunities for members, as well as develop policy positions and advocate for CHWs at the federal level.

CISWH’s involvement with NACHW has included strategic planning, conducting a comprehensive national survey of CHW membership organizations, serving as a liaison to legal services, and managing Sanofi’s fiscal sponsorship. Geoffrey W. Wilkinson, Clinical Associate Professor at the Boston University School of Social Work, serves on the NACHW board of directors.

CHWs affiliated with CISWH’s Improving Access to HIV Care Using CHWs project also presented at the Unity Conference on April 16. Savi Bailey of Legacy Community Health, Evelyn Nicholson of The Jacques Initiative, and Shala Perla of The McGregor Clinic discussed how their organizations successfully implemented new CHW programs to improve care for people living with HIV. Lourdes Yapjoco, Keanu Medina, and Merylyn Yegon of Southern Nevada Health District discussed their work with the Latinx community.

Unpacking a Client’s Past to Move Forward: A Community Health Worker Intervention Story

Dan,* a veteran living with HIV in Fort Myers, Florida, was one of The McGregor Clinic’s more difficult cases. He did not regularly take the medication needed to keep his HIV suppressed. His doctors, nurses, case manager, and his girlfriend had been frustrated with his behavior for years. They all told him that if he didn’t take his medicine, he could die. Dan didn’t seem to care.

Dan was then referred to Shala Perla, a community health worker at the clinic. She was determined to help him. “Tell me your story?” she asked when she first met him. But answering even this question wasn’t simple for Dan because he had neurological issues that caused him to speak in short, halting phrases. Just getting the words out to communicate was often a challenge.

Shala learned that Dan wasn’t receiving the veterans’ benefits to which he was entitled. He expressed interest in receiving his benefits, but the process seemed overwhelming, and he didn’t feel like he even deserved the benefits—but at least Shala had found a way to connect. She started meeting him weekly at a McDonald’s near his home to help him with the application, and to get to know him and earn his trust. Yet months later, progress on his health was still slow. 

One sweltering summer day, Dan showed up at Shala’s office with a large suitcase in tow. Dan had to take three busses to get to the clinic, so Shala knew something serious was happening. Did he break up with his girlfriend? Would he now need to find housing on top of all the other difficulties he faced?

“You asked me my story,” said Dan. “This is my story.” And he opened the suitcase.

He showed Shala photo albums and piles of letters—his whole life before the military, before his diagnosis. He shared how he felt his family had abandoned him, how he hadn’t talked to his son in years, how he felt depressed and hopeless, how traumatic it was to learn he had HIV.

“I was so overwhelmed it made me want to cry—it was a huge breakthrough,” said Shala. “It wasn’t like he didn’t want to try. He was saying, ‘these are the pieces of the puzzle, this is why things are tough for me.’ Everyone at the clinic was shocked. He had never opened up to anyone like that before.”

After sharing his story, Dan was more receptive to getting the help he needed. “If I told him he had to go to an appointment, he would,” said Shala. Months later, Dan now takes his prescriptions, and his viral load is undetectable, which means he can’t pass HIV on to others. He has gained weight and looks healthy; his case manager can’t believe he’s the same person, said Shala. He is also engaged to his girlfriend, and has become an advocate for his own health. His turnaround has been “phenomenal,” said Shala. “He knows he has value.”   

“You don’t have to coddle clients. We are just there to bring the light out,” said Shala about the role of community health workers in reaching clients who seem resistant to change. “If you give clients the tools to succeed, they will go after it—you just need to be there when they’re ready.” Perseverance is key, she added. “It’s hard getting a door shut in your face. But for every five times you try, the sixth time might be the time that opens the door for them.”

*Name has been changed.

Article by Nilagia McCoy of the Center for Innovation in Social Work & Health, as told by Shala Perla of The McGregor Clinic. Photo credit: scorzonera, Flickr. The McGregor Clinic is a partner in CISWH’s Improving Access to HIV Care Using CHWs project.

The Improving Access to HIV Care Using CHWs project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U69HA30462 “Improving Access to Care: Using Community Health Workers to Improve Linkage and Retention in HIV Care” ($2,000,000 of federal funding). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

Words of Wisdom from Community Health Workers on Developing and Sustaining a Program

What does it take to be an effective Community Health Worker (CHW)? How can health organizations seeking to improve their outreach to marginalized communities best implement a CHW program? On January 15-17, 2019, the Center for Innovation in Social Work & Health (CISWH) hosted more than 30 CHWs and their supervisors to discuss these issues, share their accomplishments, and network.   

With roots in the communities they serve, CHWs play a valuable role in connecting underserved populations to the health and social services they need. However, the roles and responsibilities of CHWs are not always clearly defined, and more health organizations could make use of CHW services if they had effective programs in place.   

To help address this need, CISWH’s Improving Access to HIV Care Using CHWs project is providing training, evaluation, and technical assistance to ten HIV/AIDS service providers that are developing CHW programs. The January conference was part of a series of convenings that began in 2016, which will help inform the creation of resources for CHWs across the U.S.

During an interactive session, attendees shared their advice for CHWs and for organizations considering starting a CHW program. From logistics to working with clients, the session provided insight and words of encouragement relevant to CHWs in a range of settings. Below are some highlights from the discussion.    

On working with clients:

CHWs share their experiences

“Connecting is the most important thing. Connect with providers regularly so they remember what you do. Connect with other departments so you know who to ask for resources. And connect with your clients in a genuine way. They are experts in their own experiences; use their expertise as you work together to improve health outcomes.” — CHW supervisor, Houston, TX

“Be flexible; ask tons of questions; don’t be afraid to tell your clients you don’t know the answer to a question they may have but you will try to find the answer; but most importantly, be open to learning new things.”— CHW, Mobile, AL

“Patience is a virtue. The ability to wait for something without frustration is a useful skill and a good aspect of one’s personality.” — CHW, Baltimore, MD

“Listen to the small things, because that’s where the story will be.” — CHW, Baltimore, MD

On developing a CHW program:

CHW presenting at conference.

“Clearly define the roles and functions of the CHWs. This will avoid any role confusion.” — CHW supervisor, Las Vegas, NV

“CHWs and case managers can co-exist indefinitely. Their end game may be the same but the routes are different.” — CHW supervisor, Mobile, AL

“Choose CHWs who are flexible, open-minded/not afraid, knowledgeable, resourceful, dedicated, passionate. Create a system/structure for: regular check ins, communication, standardized documentation, and connecting the patients to the healthcare team and community resources.” — CHW supervisor, Baltimore, MD

“Continue to offer trainings and staff development, refreshers on motivational interviewing, conflict resolution, etc. Remember to say thank you for service and to those who go above and beyond – kudos!” — CHW supervisor, Lake Charles, LA

“Don’t be disappointed if you don’t see immediate change after implementing your program. Change sometimes happens slowly, no matter how much love and attention you are putting in.” — CHW, Houston, TX

On dealing with difficult times:

“Celebrate your successes, no matter how seemingly small. Small successes may make a big impact!” — CHW supervisor, New Orleans, LA

“Be encouraged; even when it seems no one is watching your hard work, someone is. Your ‘shine’ is not unnoticed.” — CHW, Fort Myers, FL

“Self-care should be your number one priority. Your work will be ineffective, lack passion, and direction if you aren’t intentional about taking care of you.” — CHW supervisor, Greenville, NC

“Open yourself to receive as much as you give. You are worth the effort, joy and passion you give to others.” — CHW, Birmingham, AL

CHWs and supervisors representing 10 project sites attended the January conference.

Article and photos by Nilagia McCoy of the Center for Innovation in Social Work & Health.

The Improving Access to HIV Care Using CHWs project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U69HA30462 “Improving Access to Care: Using Community Health Workers to Improve Linkage and Retention in HIV Care” ($2,000,000 of federal funding). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.