PEERS AS SUBJECT MATTER EXPERTS IN CARE & COMMUNITY PROGRAMS
TOOLKIT FOR INCLUDING THE PEOPLE YOU SERVE
PEERS AS SUBJECT MATTER EXPERTS PEER SUPPORT FOR PWH PEER SUPPORT BEST PRACTICES EDUCATION AND TRAINING
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MATTIE: “I am my story.”
CONTENTS INTRODUCTION ........................................................................2 PEER SUPPORT FOR PEOPLE WITH HIV (PWH) .........................3 - Toolkit Goals ...............................................................................3 - Definition of Peer Support .........................................................3 - Opportunities ..............................................................................3 - Checklist: Where to start ...........................................................4 UNDERSTANDING PEER ROLES AND SUB-ROLES ...................6 - Table 1: Role & Sub-roles ..........................................................7 - Table 2: Skills – Related Abilities ...............................................8 IDENTIFYING SMEs: WHO IS A GOOD CANDIDATE? ...............10 - Candidate Characteristics .......................................................10
DEVELOPED BY Alabama AIDS Education Training Center (Alabama AETC) of the Southeast AIDS Education Training Center (SE AETC).
CONTRIBUTORS National Association of Peer Advocates DeAndra Brown-Tuyishime, MAEd, CHES Michael S. Buchanan Jacob Buchanan-van Megen, PE Tony Christon-Walker Bretia Gordon, EdD, MPA Lisa Johnson-Lett Doug McCloud Landon L. Nichols, Jr., MPA Wilko van Oosterhout Elana M. Parker Merriweather, EdS, LPC, AADC Cordelia Stearns, MD, AAHIVS Thomas L. Stephens
This resource is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U1OHA30535, AIDS Education and Training Centers Program. The content and conclusions presented here are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government. For more information, please visit HRSA.gov.
DISCLOSURES Photographic images appearing in this publication are used with permission specific to educational and promotional purposes of this or related programs referenced herein. Crediting consideration reflects documented use restrictions. Images may not be extracted from this document for unrelated use without written authorization from the pictured individual and Medical Advocacy and Outreach (MAO). Documentation of image disclosures and permissions of use to MAO and its affiliated programs, including Alabama AETC, and partners are in the possession of MAO’s Manager of Communications and Marketing.
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IS YOUR ORGANIZATION READY? ...........................................12 - Special Considerations ............................................................12 - Table 3: Organizational Readiness ...........................................13 - Key Organization Considerations .............................................14 MORE BENEFITS OF PEER SUPPORT .....................................16 - Core Values ...............................................................................16 - Reasons ....................................................................................16 - Strategic Benefits .....................................................................17 - Key Participation Points ...........................................................17
SMs AS PART OF A PROCESS .......................................18 IN THE CONTEXT OF THE HIV CARE CONTINUUM ........19 - HIV Care Continuum ......................................................19 - The Status of HIV & the End the HIV Epidemic Plan ....20 EDUCATING & TRAINING SMEs ....................................22 - SME Training Considerations ........................................22 - Developing Peer Training ..............................................23 - Checklist: How to begin ................................................23 - Table 4: Who Should Be Involved in Setting Up Systems for A SME Workshop? .....................................24 EXAMPLES OF PROGRAMS & BEST PRACTICES ..........25 - Why It Works? ................................................................25 - Best Practices ................................................................25 - NO LOOK Campaign ......................................................26 - The “E” Goals of Learning & Activities .........................26 TRAINING & STAFF ORIENTATION ................................27 - Advocating for SME Certification ..................................27 ACHIEVEMENTS ...........................................................29 - Preparation Activities ....................................................29 - The Snowball Effect .......................................................29 - Revising NO LOOK .........................................................29 BEHAVIORAL HEALTH INTEGRATION ...........................34 - Table 6: Functional Considerations ...............................34 - Table 7: Staffing and Hiring Considerations .................35 - Specialty Programs .......................................................36 - Recovery .........................................................................36 - Mental Health ................................................................36 REFERENCES ...............................................................37 APPENDICES ................................................................38
INTRODUCTION: PUTTING PEER SUPPORT IN PERSPECTIVE
by Landon L. Nichols, Jr. MPA he/him/his Peer support first began in the 1980s as a significant form of assistance for people dying from AIDS-related illnesses (Denver Principles and MIPA, Meaningful Involvement of People with HIV). This Toolkit will function as a manual for implementing intentional peer support services, offered by Subject Matter Experts (SMEs), for and by people living with HIV. Peer support services have become essential for realizing the federal goals in the Ending the HIV Epidemic: A Plan for America (EHE) by helping people cope with an HIV diagnoses, deal with HIV related stigma, and navigate care and social services that can be daunting for the newly diagnosed. Putting people with HIV at the heart of the HIV Care Continuum as experts, and seeing them as essential healthcare workers in ending the HIV epidemic, builds mutual empowerment, leadership development and healing through personal storytelling and empathy. No one understands the reality of HIV better than a person with HIV. As observed by Mattie, each person has their own story to tell and experiences to share. Since the beginning of the epidemic, people living with the virus have been on the front lines fighting for resources that prevent new HIV infections, promote improved HIV treatments, and expand the availability of care and services. Trained peer advocates bring a unique, experiential perspective that care professionals, social workers and others who are not living with HIV simply cannot provide. Studies of peer programs have shown again and again that they are effective in improving self-efficacy of managing illness while decreasing hospitalization, helping to maintain healthy behaviors and a higher quality of life for participants. Many policy makers, educators, and healthcare practitioners have stressed the importance of cultural competence in the delivery of HIV services.
“No one understands the reality of HIV better than
The practice of incorporating SME into existing care teams is also recognized as a crucial step towards culturally competent care. The Centers for Disease Control and Prevention (CDC) has even highlighted the effectiveness of using peers in promoting positive health outcomes in underserved and marginalized communities. SMEs accomplish this by acting as liaisons between providers and clients, translating medical jargon into layperson terms, providing education and informal counseling, serving as navigators to help clients access the healthcare system, and providing connections to other community resources. SME can also relay information from clients to providers about improving the quality of their care. Many HIV-related publications and literature have attested to the effectiveness of peer support programs in improving medication and appointment adherence among the clients of these programs. The quality of healthcare services increases when people with HIV play an instrumental role in advancing that access for others.
a person with HIV.”
This Toolkit advocates for the integration of SME into a multidisciplinary care team, depending on the needs of the organization, SME can work as part of an advisory board or in teams with case managers to find people who are out of care, or communities disproportionately impacted by the HIV epidemic. They can provide support and education individually or in groups. The information, tools and resources provided will help organizations and communities work together to effectively involve people with HIV in their own care and treatment as and treatment of others, elevating them to something more than just another patient with HIV.
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PEER SUPPORT FOR PEOPLE WITH HIV “If there were the implementation of Peer Support services across the nation and in every agency or organization that provides services for people with HIV then I would not have received a paper slid in front of my face and leaving me all alone at the age of 19 to
Toolkit Goal #1 With this toolkit the Alabama AIDS Education Training Center (Alabama AETC) wishes to encourage the integration of people with HIV (PWH) as Subject Matter Experts (SME Peer Support) into multi-disciplinary care teams and, subsequently, strengthen their capacity to reach at-risk communities and, in turn, to enable those communities to access updated information and HIV care.
decipher for myself
--see definition--
If I am HIV+.” T.I., N.A.P.A.-NY
Toolkit Goal #2 We hope to urge Ryan White Clinics to utilize SMEs to carry out community activities in HIV prevention, care, and treatment. These workers may have a variety of titles, including: outreach worker, patient navigator, peer educator, counselor, linkage care coordinator, health system navigator, or promoter. Many Ryan White recipients have already successfully integrated these types of roles in their care continuum. --see opportunities--
Definition • Peer support is a flexible approach to building healing relationships among equals, based on a core set of values and principles. • Peers serve as role models for living and thriving with HIV, providing hope to clients living with HIV, and share strategies for overcoming the challenges of living with HIV.
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Opportunities • Bridging the gap between clients and providers. • Developing relationships with clients and encouraging them to share information they might not otherwise share with their providers. • Ability to spend more time with clients. • Address social determinants of health such as housing, food, transportation, employment, and other support services.
Checklist Where to start... F Determine the goal of SME involvement: What do you want to achieve by including an SME as part of the medical team? F Identify the role of the SME. F Examine and revise staffing plan for the HIV clinic, including a designated SME supervisor. F Share with all team members for buy-in and support. F Set up a plan for orientation with all team members so the SME and the team members can discuss how they can work together.
GLENDA: “I want everybody to understand the difference between HIV and AIDS”
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MARVIN: “I have been thriving with HIV for many years.”
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UNDERSTANDING PEER ROLES AND SUB-ROLES
Peer support offers a level of acceptance, understanding, and validation not found in many other professional relationships.
Peer support encompasses a range of activities and interactions between people who share similar experiences of being diagnosed with HIV. This mutuality between a peer and person using services promotes connection and inspires hope. Peer support offers a level of acceptance, understanding, and validation not found in any other professional relationships. They both work to improve and enhance the lives of other people with HIV. Peers can meet in small groups or through individual contact in a variety of settings such as churches, community-based organizations, clinics, hospitals, in a shelter, or anywhere else people like to gather. Their goal is to share lived experience and practical guidance. Peer workers help people to develop their personal goals, create strategies for self-empowerment, and take concrete steps towards building fulfilling, self-determined lives for themselves. Peers offer encouragement, practical assistance, and guidance. Peers are often involved in community work such as outreach and education, participation on HIV advisory and planning council committees and speakers’ bureaus. Regardless of their specific tasks and objectives, they are uniquely positioned to provide insight and support to PWH. As a part of a multidisciplinary team, peers can facilitate client-provider communication and provide a sense of how other individuals experience their HIV diagnosis and treatment. Often peers have more accurate information about actual and potential challenges for clients and are also able to communicate the healthcare team’s messages to clients more effectively.
different in nature from more traditional professional positions, it is necessary to be more explicit in defining peer roles, responsibilities, and activities. Defining a clear role for peers in an organization can also help to avoid overlapping or duplication of responsibilities with other members of the health care team such as case managers. A sample job description is provided at the end of this Toolkit. See Appendix A. Of course, the roles and responsibilities of peers can vary widely depending on the focus of the organization or program. Organizations need to first identify the role of the SME within the broader care team and then create a new, or adapt an existing, organizational infrastructure in order to support and empower the SME in their work. Thinking about existing services and a service delivery model is an essential element in planning a new SME program. After doing this, you can then determine how SME services will best complement current services to improve patient outcomes. Tables 1 and 2 on pages 7 and 8 provide examples of potential roles and skill-sets you may wish to consider.
Regardless of how peers are used, it is essential to define their roles, responsibilities, and interaction with clients. Because the job skills and activities entailed in peer work are 6
Table 1
Role
Sub-roles
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Cultural Mediation among Individuals, Communities, and Health and Social Service Systems
a. Educating individuals and communities about how to use health and social service systems b. Education systems about community perspectives and cultural norms (including supporting implementation of Culturally and Linguistically Appropriate Services (CLAS standards) c. Building health literacy and cross-cultural communication
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Providing Culturally Appropriate Health Education and Information
a. Conducting health promotion and prevention education in a manner that matched linguistic and cultural needs of participants or community (community outreach) b. Providing necessary information to understand and prevent diseases and to help people manage health conditions (including chronic illnesses)
Care Coordination, Case Management, and System Navigation
a. Participating in care coordination and/or case management b. Making referrals and providing follow-up c. Facilitating transportation to services and helping to address other barriers to services d. Documenting and tracking individual and population level data e. Informing people and systems about community assets and challenges
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Providing Coaching and Social Support
a. Providing individual support and coaching (short track metal health assistance) b. Motivating and encouraging people to obtain care and other services c. Supporting self-management of disease prevention/ management of health conditions (self-care) d. Planning and/or leaving support groups
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Advocating for Individuals and Communities
a. Advocating for the needs and perspectives of communities b. Connecting to resources and advocating for basic needs (e.g.food and housing) c. Conducting policy advocacy
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Building Individual and Community Capacity
a. Building Individual and Community Capacity b. Training and building individual capacity with SME peers and among groups of SMEs
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Providing Direct Service
a. Providing basic screening tests (e.g. heights & weights, blood pressure) b. Providing basic services (e.g. first aid, diabetic foot checks) c. Meeting basic needs (e.g. direct provision of food)
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Implementing Individual and Community Assessments
a. Participating in design, implementation, and interpretation of individual-level assessments (e.g.home environment assessment) b. Participating in design, implementation, and interpretation of community-level assessments (e.g. survey of community assets and challenges, community asset mapping)
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Table 1
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10 Table 2
Role
Sub-roles
Conducting Outreach
a. Case-finding/recruitment of individuals, families and community groups to services and systems b. Follow-up on health and social service encounters with individuals, families, and community groups c. Home visiting to provide education, assessment, and social support d. Presenting at local agencies and community events
Participating In Evaluation and Research
a. Engaging in evaluating SME services and programs b. Identifying and engaging community members as research partners, including community consent processes c. Participating in evaluation and research: 1. Identification of priority issues and evaluation/research questions 2. Development of evaluation/research design and methods 3. Data collection and interpretation 4. Sharing results and findings d. Engaging stakeholders to take action on findings
Skills
Related Abilities
Communication Skills
a. Ability to use language confidently b. Ability to use language in ways that engage and motivate c. Ability to communicate using plain and clear language d. Ability to communicate with empathy e. Ability to listen actively f. Ability to prepare written communication including electronic g. Ability to document work h. Ability to communicate with the community served
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Interpersonal and Relationship Building Skills
a. Ability to providing coaching and social support b. Ability to conduct self-management coaching c. Ability to use interviewing techniques (e.g. motivational interviewing) d. Ability to work as a team member e. Ability to manage conflict f. Ability to practice cultural humility
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a. Ability to coordinate care b. Ability to make appropriate referrals Service Coordination c. Ability to facilitate development of an individual and/or group and Navigation Skills action d. Ability to coordinate SME activities with other services e. Ability to follow-up and track care of referral outcomes
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Capacity Building Skills
a. Ability to help others identify goals and develop to their fullest potential b. Ability to work in ways that increase individual and community empowerment c. Ability to network, build community connections, and build coalitions d. Ability to teach self-advocacy skills e. Ability to conduct community organizing
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Advocacy Skills
a. Ability to contribute to policy development b. Ability to advocate for policy change c. Ability to speak up for individuals and communities
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TONY: “When I was first diagnosed with HIV, I was scared.”
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IDENTIFYING SME S: WHO IS A GOOD CANDIDATE? Since SMEs are members of the community they serve, this connection will be essential to the program’s success. Because of this connection, SMEs might have access to hard-to-reach populations. SMEs can be employed for recruitment purposes, and they can serve in the capacity of liaison, facilitating linkages between the healthcare setting and those in the community who needs access to health information and/or provider services.
The personal knowledge and experience within the community is an invaluable asset when it comes to tailoring programs and services to meet the community’s needs.
The personal knowledge and experience within the community is an invaluable asset when it comes to tailoring programs and services to meet the community’s needs. People like Tony offer a unique real life perspective. Lacking an undergraduate’s degree such as an Associates or Bachelor’s degree should not disqualify someone from consideration for the SME program. The success of the program in HIV-specific care, is dependent on the unique experiences and knowledge of PWH and that should be the most important consideration for hiring. Additionally, a demonstrated ability to connect with and work within one’s community is an equally important asset. Being a member of a community in need can be defined in a variety of ways. It could mean that an individual is living with HIV; it could also mean that they have lived experience with substance use, homelessness, incarceration, or social isolation. The bulleted characteristics below are examples of what you may wish to consider when considering candidates. You may also wish to revisit the Roles, Sub-Roles, Skills tables on pages 7 and 8.
Candidate Characteristics • • • • • • • •
A desire to help individuals and the community. An ability to communicate with people. An outgoing personality. The respect of community members. Living in the community with plans to stay there. Having a reputation as a leader in the community. Adaptability. Able to build effective relationships across groups by age, gender, race/ethnicity, sexual orientation, religion, immigration, incarceration history, and socioeconomic status. • Language capacity. • Basic computer skills or a willingness to learn. • Personal readiness, especially for people with HIV who wish to serve as SME.
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Tony Christon-Walker he/him/his
TESTIMONIAL “I was diagnosed in the early days of HIV crisis. At that time there was very little hope of survival and the idea of having peers for newly diagnosed patients was nonexistent. So, many people like me did not engage in treatment because we were afraid and had no idea how to navigate the systems. I went almost ten years without treatment and as the signs of HIV became more pronounced in my physical appearance; I sought help from the internet. I met this guy in Atlanta and he introduced me to a woman living with HIV in Birmingham named Jackie. They were acting as peers and didn’t know it. Jackie saved my life. She was a bubbly, beautiful woman with the soul of an angel, most importantly she was patient. Even though she knew my time to reverse the affects was waning, she let me guide the process. I went to two different clinics before I found one that made me feel comfortable. Without her, I’m not sure I would be here. The peer model works, and peers are important, they can save lives but only when you have the right people providing peer support. The mentor/mentee relationship is most beneficial when it is driven by the needs of the mentee. Having served in both roles, I realized the importance of not being overbearing even when the mentee is not taking the advice given. Many mentees are eager to learn how to care for themselves and readily accept direction from their mentors. They are the textbook cases that are easy to handle. Then there are the ones like me, not sure how or when to engage in care or disclose their status. The wrong mentor for me would have been someone who wanted me to engage before I was ready. I thank God for Jackie! She didn’t push me or get upset when I wasn’t ready to engage. She is still one of the best mentors I know.”
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IS YOUR ORGANIZATION READY? As much as it is critical to pair the right peer or mentor with the right mentee as Tony has shared, assessing if your organization is ready is an equally important step in peer program development or enhancement. If an organization is not prepared to support a peer program, the likelihood of success deminishes. Therefore, organizations should conduct an assessment of both their capacity to build a peer program and their ability to sustain the program. This means that an organization needs to value the concept of peer support in order to provide the necessary resources for that program. Resources might include: the accessibility and support of key organization decision-makers; the use of available dollars; management structure; peer support; and focused efforts on creating a multidisciplinary care team. Each phase of this process needs to include those decision makers and stakeholders who have a vested interest in the program. It is ideal for one or two point people to emerge as the champions or leaders of the process of assessment to determine the information to be gathered, analyze results, and share and act upon the results. Table 3: Organizational Readiness on page 13 provides a phase-based breakdown of considerations that may help organize your actions and guide your organization through its assessment. The information captured from the organizational assessment will also support the development of a Peer-led Support Program Plan. See Appendix B: Sample Peer-led Support Program Plan, pages 39 and 40.
Special Considerations If your organization is ready to employ SMEs it is important to remember that some PWH may be receiving social benefits which could be impacted by taking a salaried job. Before recruiting PWH to serve as SME, gather the necessary information from the Social Security Administration or the State’s Human Resources Department on how a salaried position could impact a candidate’s benefits, such as Supplemental Social Security income (SSI) or Social Security Disability insurance (SSDI), Medicaid, housing subsidies, or food and nutritional benefits (e.g., SNAP, WIC). Taking on a paid position could reduce those benefits for candidates in these situations. However, creative minds are able to find different ways that will not conflict with government benefits, think about: hourly positions instead of a salary, provide contract work, allowances, stipends and/or honorariums. Offering such information upfront will facilitate the hiring process, making it more efficient and transparent. Additionally, encourage candidates to seek out this information independently to ensure their understanding. These important steps will help you support staff retention for the care team as well as the agency overall.
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Table 3
Phase
1
Phase
2
Organizational Readiness
Program Conceptualization
The first step is to identify why the peer program is crucial and what it ideally should An initial look like when understanding operating at its of the rationale best. In this or need for the way, there is a development or enhancement of common goal/ vision that a peer program and determining directs how the what needs to be program gets developed or accomplished enhanced. In with a peer order to create a program. program goal/ vision, the following questions should be answered:
Gathering Information
That can help determine the readiness of the organization to develop and implement a peer program, including the organization’s current strengths or capacity
Using formal assessment tools may help an organization think through its program readiness. It is important to think about who should be part of the assessment process.
a. Why is having or enhancing a peer program important? b. What are the goals or expected outcomes of a peer program? c. How does this peer program fit the organization’s mission and existing services? d. What will the program look like when these goals are being met? e. Who needs to be involved in the peer program and at what phases in the process? f. What are the funding options for a peer program? g. Why is having or enhancing a peer program important?
a. Who are the decision makers at the organization? b. Who understands peer programs from a range of perspectives (consumers, clients, patients, program staff, etc.)? c. Who from the community could serve as a support or referral mechanism? d. Who is invested in the success of the peer program? •
Phase
3
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Program Development Process
The third phase addresses all of the programmatic and Creating a organizational development issues that were road map identified by (program assessment planning tools by using worksheet) that serves as a guide both a work plan and a program during the planning tool to start-up or direct activities enhancement. toward the goal of program development or enhancement.
•
•
•
A work plan is an ideal way to put the program vision down on paper. It is important to outline and include objectives, activities, and evaluation methods. Objectives are concrete descriptions of the changes to services as a result of the peer program. Activities describe exactly what peers and other key staff or community members will do and the resources that may be needed to achieve objectives and goals. Evaluation measures and methods are proposed mechanisms for determining if the goals and objectives of the program were met.
Key Organizational Considerations • • • • • • •
What is the breakdown of the recipient population to be served? What are the social demographics of the recipient population? How many recipients can benefit from peer engagement? What organizational beliefs and attitudes influence peer integration practices? What types of policies and procedures are needed for peer integration? Which stakeholders need to be included in the planning and development? What type of staff development and training is needed to support peer based programs? • What are some potential barriers to program and service implementation? • How can peers be trained on evidence based practices and interventions to ensure effective service delivery and quality care?
OPINION STATEMENT
A Doctor’s Perspective
“As a physician and MAO’s Medical Director, every day I see patients who are newly diagnosed with HIV and coming in for that critical first appointment with our clinic. Medically, HIV has evolved into a chronic condition that is very treatable and manageable - one pill, once a day is enough for almost everyone to stay healthy. But any medical center that approaches treating HIV that simply will fail their patients. Peer support is crucial to treating people instead of just treating the virus. Treating people with HIV means addressing stigma, building up self-worth that has been chipped away, repairing relationships after years of mistreatment by the medical system, confronting biases, and fighting against social inequities. The patients I see who are new to HIV care so often come wrapped in a tight shell, unable to open up or trust the healthcare team because of all they have been through before. They come in believing they are going to die, or that no one will ever love them again, or that they cannot tell anyone what they are going through. Those are heavy, heavy burdens to carry, and for some patients just participating in their care - taking medicat ions, coming to appointments - becomes such a horrible reminder of their HIV status that they stop. As much as I think our team of physicians and nurses cares deeply and tries to break through, there is just nothing like having a peer support person who can come in and say, ‘I’ve been where you are, I know those feelings, and you are going to be OK.’ That bridge away from isolation can make all the difference. There is a growing and identified need for passionate leaders who have particular interest in managing their health, as well as purpose for improving health and social services to their community. See the value of peer support workers. Be clear about the roles you need or would like them to play. Also, be clear to them and to yourself about your organization’s expectations. And, most important, make sure your organization and existing team members are prepared to support your peer support workers.”
Cordelia Stearns, MD, AAHIVS she/her/hers 14
DEBORAH: “Educate yourself! Talk about HIV. It doesn’t rub off.”
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MORE BENEFITS OF PEER SUPPORT Since the beginning of the AIDS crisis in the 1980s several initiatives have been launched to improve access to care: using peers to improve linkage and retention in HIV care, to provide training, technical assistance and support. Today, the only financial assistance to support the integration of peers into multidisciplinary care teams, strengthen their capacity to reach racial and ethnic minority communities, and reduce racial and ethnic inequities in HIV care is accessible to The Ryan White HIV/AIDS Program (RWHAP) recipients. In general, many RWHAP recipients have utilized peer support initiatives to carry out community activities in HIV prevention, care, and treatment. RWHAP recipients have integrated these roles in a variety of ways. To the extent possible, HIV/AIDS program activities strive to support the National HIV/AIDS Strategy with a focus on the Participation Points listed at the bottom of page 17. Beyond the core participation points, there are many reasons for using SMEs in health care settings. SMEs are becoming increasingly recognized as important members of the public health and health care workforce. SMEs’ unique ability to connect with the community can facilitate a patient-centered approach to improve health outcomes and lower costs. SME jobs can also improve employment opportunities for underserved communities and increase economic vitality in those communities. Hiring and recruiting SMEs also reinforces care and organizational values like those bulleted below.
“I was told I had a million copies, I felt if my viral load had spiraled out of control and it was too high and too much for me to handle, but I had a peer navigator to guide me to an understanding that through treatment it could be manageable and after 29 years I am still here today.” D.R.,N.A.P.A.-FL
Core Values • Awareness of self and others • Root Cause Analysis and Intersectionality • Mentorship • Meaningful Involvement • Leadership Development • Accountability • Healing & Resilience • Interpersonal Communication • Reflective Listening - (Motivational interviewing)
Reasons • Belief that SME are effective in peer support programs • Belief that using SME in Peer support is cost effective • Evidence that SME are able to organize communities in developing comprehensive health action plans • Evidence that programs addressing racial and health disparities are more effective when using one-on-one outreach by SMEs
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Strategic Benefits Many RWHAP recipients have consumer advisory boards in place to ensure services respond to the social and medical needs of people with HIV, and to advise on the allocation of resources to address unmet needs and improve the quality of care. Despite this history, there are no current standards or guidelines on how to integrate SMEs into care teams to improve access to and retention in HIV care and treatment. This Toolkit incorporates peer best practices from past research and state and local SME association standards. For the purposes of this Toolkit, a SME is defined as Subject Matter Expert and, as such, projected to work as a front-line public health worker who is a trusted member of and/or has a unusually close understanding of the community they serve. This trusting relationship enables the SME to serve as a liaison between health/social services and the community to facilitate access to services and improve the quality and cultural competence of service delivery. As a vital part of the care and prevention process, a SME builds individual and community capacity by increasing health knowledge and self-sufficiency through a range of activities such as: outreach, community education, informal counseling, social support, and advocacy. SME are often referred to as a multifunctional bridge, connecting individuals and the community they live with HIV clinics and support service agencies (ie., housing and food), and public health departments. Their work is considered bi-directional, meaning improving health outcomes of clients and strengthening the community while benefiting the program or clinic in which they function. Key strategic points or opportunities for SME participation are bulleted below. Page 18 examines SME functions as part of a process.
Key Participation Points • Using outreach workers to locate PWH out of medical care. • Peer counselors/educators to support retention in care or adherence to treatment. • Patient/peer navigators to connect people with HIV to referrals and resources, such as housing, food assistance, substance use treatment, specialty care, or mental health care. • Linkage-to-care coordinators to connect newly diagnosed individuals to HIV medical care RWHAP recipients have historically encouraged people at risk for and with HIV to be part of the model of care and to help shape service delivery. • Translation and interpreter services for providers to patients and patient to providers.
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SME S AS PART OF A PROCESS Definition of peer (Entry 1 of 3) 1: one that is of equal standing with another: EQUAL //The band mates welcomed the new member as a peer. especially: one belonging to the same societal group based on age, grade, or status //teenagers spending time with peers - helpers - supporters - educators - specialists - experts J Assisting, educating, and supporting PWH to become aware of their status. X Reduce new HIV infection. X Explain health benefits and other types of available assistance to PWH. Explain strategies for safer sex practices.
J Linking and engaging PWH into medical care. X Increase access to care and optimize health outcomes for PWH. X Creates opportunities for PWH to seek wellness and empowerment (autonomy) in their lives. X Helping PWH adhere to treatment. X Reduce HIV/AIDS related emergency visits.
J Reduce HIV-related health and gender, inequities and address social determinant’s of health.
J Reduce the rising demand on mental health services. X Peer support is a form of upstream suicide prevention. X Providing mental health care before the a crisis arise.
J Achieve a more coordinated response to Ending the HIV Epidemic. X Peer support is intertwined with wraparound services and gets lost when provider of services are billed for psycho-education or Basic Living Skills filled under medicaid, but offered and provided by HIV- peers. We need peers helping peers who really are about our very best interest and not utilize or mishandle HIV service just to cash-in on on insurance.
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IN THE CONTEXT OF THE HIV CARE CONTINUUM The HIV Care Continuum is a public health model that outlines the steps or stages that newly diagnosed people go through from diagnosis to achieving and maintaining viral suppression (a very low or undetectable amount of HIV in the body). X X X X X X
Step 1 w diagnosis of HIV infection Step 2 w linkage to HIV medical care Step 3 w receipt of HIV medical care Step 4 w retention in medical care Step 5 w achievement and maintenance of viral suppression
This Care Continuum model is useful both as an individual-level tool to assess care outcomes, as well as a population-level framework to analyze the proportion of PWH in a given community who are engaged in each successive step. This helps policymakers and service providers better pinpoint where the gaps in services exist and develop strategies to better support PWH to achieve the treatment goal of viral suppression.
Implementing Subject Matter Experts as part of the HIV Care Continuum for the support of the newly diagnosed is an additional step which could be a critical addition to moving successfully through the continuum in the early stages of the diagnosis to achieve and maintain viral suppression. There are important health benefits to getting a suppressed viral load as soon as possible and as low as possible: PWH who get and keep an undetectable viral load can live long, healthy lives. There is also a major prevention benefit: PWH who take HIV medicine daily as prescribed and get and keep an undetectable viral load have no risk of transmitting HIV to their HIVnegative sexual partners. For individuals with HIV to receive these benefits, they need to be aware that they have HIV, be connected to and engaged in regular HIV care, and receive and adhere to treatment. However, there are obstacles that can contribute to poor engagement in HIV care and treatment, substantially limiting the effectiveness of efforts to improve health outcomes for those living with HIV and reduce new HIV transmissions.
HIV Care Continuum Subject Matter Experts Achieved Viral Suppression
Engaged or Retained in Care
Diagnosed with HIV Linked to Care
Prescribed Antiviral Therapy
Peer support should be available from the moment an individual is newly diagnosed with HIV. People who are successfully treated for HIV, cannot transmit HIV to another individual if they are virally suppressed. They who don’t know their HIV status, they who knew they had HIV, but did not get care, and those not suppressed yet, are responsible for 100% of the new infections. Basic HIV 101 education is a crucial part of effective peer support as noted on page 22. 19 - PEER TOOLKIT
MORE WORK TO DO
The Status of HIV & the End the HIV Epidemic Plan
KNOW THE PLAN hiv.gov/federal-response/ending-the-hiv-epidemic/
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TESTIMONIAL “I was in my twenties during the AIDS crisis. People where dying. I was an openly gay guy in Amsterdam, afraid of sex. I got HIV infected in the mid-nineties. It was one of my earlier sexual experiences. My doctor told me I was an HIV positive elite natural controller. I had no idea what that was supposed to mean, but what I understood was: my body was able to maintain HIV-RNA values below 50 copies/ml, while remaining therapy naïve. I didn’t need to start HIV meds, but in 2008 a Swiss scientist published his breakthrough research about being undetectable and thus not sexually infectious to others. I started HIV meds in 2011 just because I didn’t want to take the risk to pass on my HIV to my lovers. I connected with local human rights groups to get the U=U message out in discotechs and gay circuit parties in major European cities. That’s how I met my peers. They have always been a significant part of my journey living with HIV. I’m truly grateful for all the empowerment efforts, medical explanations, support and encouragement my peers have always provided to me. It’s because of their support I wholeheartedly believe: no one of our brothers, sisters with HIV should be living in the shadows. Yet many of us still are. Even in this toolkit, some quotes and testimonials are anonymous. People are still afraid to disclose their status because of the judgment of those in their most intimate circle. Yes, most new infections still happen amongst key populations: people who identify as gay, and other men who have sex with men, people of trans experience, people who work in commercial sex, and people who use drugs. Many of them do not have access to prevention and treatment because of social, political and economic marginalization. Too many adolescent girls and young women are impacted by the HIV epidemic because they don’t have access to information about sexual health and adequate reproductive services. Many face inequality, discrimination, and violence. If we want to solve the problems these populations face, we first have to make sure that all people are seen, heard and respected equally. In Alabama children age 13-25 face high HIV infection rates. Please make sure your children have access to latest information to protect themselves on their sexual journey, and support them when they need it most. Remember that HIV ignorance is a choice. We can all play a part to improve the quality of education and availability of factual information. Nowadays, for many of us, HIV is a medical non-issue. Judgment was our biggest struggle in the eighties, and it’s still our biggest obstacle today.”
Jacob Buchanan-van Megen, PE he/him/his
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EDUCATING & TRAINING SME s This section of the Toolkit describes the systems that need to be in place within an organization to support a SME as part of a care team, and it also makes recommendations for how to clearly define the SME role. The traditional HIV care team clinic structure consisting of health care providers, nurses, medical case managers and/or social workers may not be sufficient to address all client needs and promote achievement of viral suppression.
SMEs, who may include outreach workers and/ or navigators, are members of the health care workforce who can reduce the burden and stress of large caseloads and enhance the traditional RWHAP care team to meet the needs of PWHA. At this moment the State of Alabama doesn’t require training for SME certification, BUT we recommend intensive training be provided to SMEs and program staff prior to and ongoing during service delivery.
Additional staff members are needed to step out of the clinic to reach out and engage with people who are not aware of their status, who have fallen out of care due to other competing psycho-social needs (e.g., homelessness, substance use, mental health, or mistrust of the health care system), or who are busy and may feel healthy, and do not prioritize a need to seek HIV care and treatment.
While there are no national standards, the number of required training hours for SMEs to be certified averages in most states 60–80 hours. Based on best practices and lessons learned the National JSI Healthy Start EPIC Center recommends up to a 40-hour initial training for anybody who wants to work in a peer/SME role. Below you will find a bulleted list of SME training topics to consider including in your plans common to many successful models, and which have proven particularly beneficial to the SMEs who participate in the initiatives launched by Medical Advocacy and Outreach (MAO) in Alabama.
SME Training Considerations • Basic information about HIV and the viral life cycle • Communication skills • Role in the HIV care team/history of peers in organization • Motivational interviewing (MI) • Trauma-informed care (TIC) • Documentation of work • Use of supervision • Understanding medical terminology such as: medications, lab reports, as well as names of opportunistic infections • Cultural Competency/Humility
• Harm reduction strategies • Safety in the field. • Reporting and documenting critical incidents/sentinel events • Maintaining professional boundaries • Mandatory reporting—policies, procedures • Working with challenging clients. • Stigma and discrimination • Resources for PrEP and other prevention • Social Determinants of Health • Common co-morbidities (e.g.diabetes)
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Developing Peer Training Although to some it may not need to be repeated, you MUST complete the preliminary planning process of identify the SME role(s) in the context of organizational goals and structures before you can even begin to develop or design a system or process for peer training. Organizations need to first identify the role of the SME within the broader care team and then create a new, or adapt an existing, infrastructure model in order to support and empower the SME in their work. Thinking about existing services and the service delivery model is an essential element in planning a new SME program. After doing this, you can then determine how SME services will best complement current services and improve patient outcomes. In adequate pre-planning can lead to disruption, disatisfaction, and significantly curb success. Once your team has completed organizational assessments and have a grasp on the roles and functions SMEs are envisioned to fill, consider the checklist at right to begin putting pieces in place that will support both SME training and subsequent program operation. Please note, some of these bullets are purposefully a revisiting or refinement of steps, questions and/or actions from preliminary planning. Table 4 on page 24 - Who Should Be Involved In Setting Up Systems for A SME Workshop? - is offerred to help you identify possible stakeholders that may bring valuable perspectives to the development of your SME/ Peer Support Program and to the development of a training system.
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Checklist How to begin... F Involve existing staff to identify and prioritize the service gaps that SMEs might help fill. F Clarify how SMEs will help meet the needs of the agency or program and how they will contribute to fulfilling the agency mission. F Involve representatives from the care team (including case managers) and programs in the preliminary planning and decision-making stage. - This involvement will help create a strong foundation for SME services as the program develops. F Develop a flow chart to show how SME activities fit with other programs and services. F Work together as a team to create a workflow with care team members to establish which clients the SME could help support and how the SME’s tasks would complement other care team member tasks. F Identify any specific populations that the SME program will serve.
Table 4
Who Should Be Involved In Setting Up Systems for A SME Workshop?
Whether the SMEs are new to your organization, or you are strengthening the capacity of an existing program, this table includes a list of potential stakeholders to involve. Internal Partners J Medical and social service providers, including: X Health care providers (e.g., nurses, nurse practitioners, certified medical assistants, (CMAs), physician assistants, physicians). X Behavioral health staff X Other support services staff (e.g., benefits counselors, outreach workers, etc.) X SMEs on staff X Case managers X Program supervisors X Administrative directors
External Partners J Hospitals, medical specialists, and social service agencies from outside your organization
J Your organization’s board of directors/ executive directors
J Statewide/organizational consumer advisory boards
J Human Resource departments and department heads with whom the SME may interact (e.g., nutrition, primary care)
J RWHAP Planning Councils & Advisory Councils
J Supervisors/department heads where SMEs will be assigned
J State and regional SME/peer organizations
J Funders/donors
J City and State departments of public health
Use RWHAP enrollment and outcome data to inform the SME program planning process. Every RWHAP recipient is required to submit annual reporting and quality management data to HRSA/HAB about its services, called The Ryan White HIV/AIDS Program Services Report (RSR). If you are a community health center, consider using information from your Uniform Data System (UDS) which you are required to report to the Bureau of Primary Health Care or other quality management system to help you identify key gaps a SME could address in your programs and services. Review the program data to identify linkage, retention, and viral suppression rates for your clinic and identify client groups (e.g., young men, women of color, immigrants, etc.) experiencing lower than expected viral suppression or retention rates compared to your overall clinic populations (i.e., health inequities). These groups could be populations that would benefit by engaging with a SME. Also, engage with your local and state health department leaders and review HIV epidemiological reports to identify at-risk populations for HIV or those who may be lost to care.
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EXAMPLES OF PROGRAMS & BEST PRACTICES The Lead (Leadership, Education, and Advocacy Development) Academy, is a nationwide Peer-led Program for Peer Support Services developed, in part by, the Southern AIDS Coalition. Peer Support offered by SMEs is recognized by the National Association of Peer Advocates (N.A.P.A.) as a best-practice model for supporting people with HIV with co-occurring disorders or illness (i.e., Hepatitis C, Substance Use Disorder, mental health challenges, etc.). Peer support can be a significant tool for a person on their journey to positive living. The LEAD Academy model relies on PWH to provide peer-to-peer support to others, drawing on their personal experiences to promote wellness and positive living. Peer support is about getting guidance from someone who’s been there.
Why it works? • It provides people an essential resource for positive living/living positive. • It is easier to identify and communicate with someone who has lived through and survived some of the same events or experiences. • There are no limits except if someone is in danger of hurting themselves or others. • It takes place in a one-on-one, confidential setting and creates a special bond of trust between two individuals. • People feel a sense of hope and inspiration from peers. • It offers an opportunity for a person to achieve a greater level of independence and self-sufficiency through role modeling and encouragement by peers.
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Best Practices
1. It’s based on mutual respect and personal responsibility, peer support focuses on wellness rather than on illness and disability. Peers share with one another their experiences, their strengths, and their hopes – a powerful combination for living positively. 2. Peers are people living with HIV and/ or other co-infections who have completed specific training that enables them to enhance a person’s wellness by providing peer support. 3. Peer support can be a one-on-one experience or a group of people sharing together. 4. Peers provide nonjudgmental, nondirective support to a peer who is experiencing issues in relation to living with HIV. It is short-term and provided by a peer instead of a health professional. 5. After training peers use active listening and problem solving skills to assist other peers. This is evidence based and is supported on the concept, “People are capable of solving most of their own problems of daily living.” 6. Peer Supportive Psycho-social sessions are structured to value the practice of autonomy and generate solutions.
NO LOOK Campaign Initiating a Peer-Led Support Program within your organization will increase the quality of life and well being of PWH, and it does not need to present a significant restructuring of your care service system. Medical Advocacy and Outreach (MAO) successfully implemented the No Look Campaign within the guidelines of The Lead Academy, a nationwide development program, created for and led by PWH, as a grassroots anti-HIV stigma initiative. Organizations who serve PWH must develop leadership opportunities and foster their involvement in HIV for programming. It was with this realization that MAO’s recruitment slogan “Nothing about us without us” was coined. To recruit PWH as peer-leaders for its The Lead Academy project, MAO looked to its own clients, using strategies such as word of mouth, folders in the clinic waiting areas and discussions at the Alabama Consumer Advisory Board (ACAB) meetings. These efforts resulted in thirteen (13) participants: 6 males, and 7 females (including one self-identified female of trans experience). In 2018, a community grant, known as SPARK (Southerners Awareness and Real Knowledge), awarded by the Southern AIDS Coalition, provided resources for MAOs Lead Academy members for additional education and interactive activities to foster empowerment through education, engagement, and embracing life with HIV.
In 2019 the SPARK grant supported the launch of a city-wide No Look Campaign led by the same academy members. The intent of the No Look Campaign was to dispel the myth that PWH have a certain look and are unclean people. Since Montgomery is the capital city of Alabama and the largest city in MAO’s service area, the Campaign elected to pilot efforts with a Montgomery focus. Montgomery’s public transportation system and strategically chosen digital billboards at high-trafficed intersections presented the means by which to deliver public health and stigma-combating messaging to the masses. Simple messaging stemming from “SEE PEOPLE, NOT ILLNESS” were paired with large real-people action photos of the seven academy members displayed on city buses as well as billboards. The No Look Campaign, made an enormous impact on engagement and care retention of PWH. It went on to grow into a popular conversation starter in rural communities about what HIV looks like, and how you cannot know who might be living with HIV by appearances alone. Members of the Lead Academy went on to provide other community educational programming such as PrEP activities, serving on focus groups, and sharing personal stories at testing events and other high profile activities that attracted the attention of our community members. See Achievements on page 29.
The “E” Goals of Learning & Activities
X Empowerment — Lead Academy members were encouraged to tell their stories with confidence, become advocates for themselves, and strong leaders for others. X Educate — Lead Academy members were instructed how to host educational programs, engage in public speaking activities, develop a true working knowledge to help overcome myths with facts, and teach risk-reduction strategies to others by challenging their personal obstructive beliefs. X Engage — Peer-to-Peer interaction and adult learning principles is critical. X Embrace— Being a person first and add the fact that HIV is merely a part of your or someone’s individual life story.
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TRAINING & STAFF ORIENTATION Adding a new member to the HIV care team requires training for existing staff about communication strategies, new referral processes, and documentation procedures. Its advised that organizations offer an initial training to all staff (including direct service, administrative, and security staff) about the value of the SME, their role, responsibilities, and interaction with clients, including referrals, scheduling, and other relevant information. Provide detailed information about the SME during organization-wide meetings, and via emails or newsletters. Establish Connections with the National Association of Peer Advocates (N.A.P.A.).* If your state has a local peer association, make connections and provide contact information to SMEs and supervisors.
Encourage SMEs to sign up for mailing lists/ email subscription lists to receive updates from their local AIDS Education and Training Centers. Nationally, organizations and peers can check out e-HIV Review which jointly provides expert insight and analysis providing information directly relevant to HIV care from John Hopkins University School of Medicine and the Institute for John Hopkins Nursing. These connections to both SME and HIV associations can provide opportunities for professional growth, knowledge, and advocacy for SME positions. As mentioned earlier, SMEs are in a unique position as a member of the health care workforce to affect and promote health equity by elevating the voices of people who are often marginalized by the healthcare system.
* The National Association of Peer Advocates (NAPA) is an organization founded and operated by peer advocates, based in Alabama. Information and member quotations included in this Toolkit were contributed by Lisa Johnson-Lett.
Advocating for SME Certification • Encouraging SME certification may help an organization with financing and sustaining the SME position as a member of the health care workforce. • While not all states require certification to practice as an SME, it can be a useful step for professional growth and development. • Certification helps assure that SMEs share common knowledge and exposure to the same SME principles and local resources. For resources about certification, secure funding and work on a curriculum for the State of Alabama through the AIDS Education Training Center for Peers (led by Peers) and consult the stewards of the Positive Leadership Council (PLC) at AIDS Alabama to assist.
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OPINION STATEMENT A Prevention Specialist & Public Health Perspective “Implementing a robust structure of Subject Matter Experts with leaders and champions, could very well serve as a best-practice model for supporting people who have been diagnosed with HIV. Peer support can be one of the most significant tools a person can use on their journey with HIV. Peers rely on individuals who live with HIV to provide peer-to-peer support to others, drawing on their personal experiences to promote wellness and positive living. Peer support is about getting help from someone who has been there. It’s primarily based on mutual respect and personal responsibility. The relationship focuses on wellness rather than on illness and disability. Each shares their experiences, their strengths and their hopes. Peer support workers are people living with HIV and/or related co-infections who have completed comprehensive training designed to enable them to enhance a person’s wellness by providing experience-based support and understanding. It’s not so much a relationship built on advice, but rather on the development of a personality. Peer support can be a one-on-one experience or a group of people sharing information together and broaden their behavioral choices by sharing life experiences. It should be non-judgmental and non-directive to the individual who is experiencing issues and challenges in their journey of living with HIV. The most important peer support tool is the use of active listening and problem solving skills to assist another person based upon the concept that people are capable of solving most of their own problems. Peer support sessions are structured so that the person generates solutions that they are more likely to act upon. Peers also have a unique and vital role to play in advocating for programs and services; as well as educating and representing the community about current political trends impacting the social determinants of health; and identifying health disparities that are products of a challenging healthcare system. With that in mind, our goal should be to focus on nurturing the leadership skills of individuals living with HIV, and building their harm-reduction knowledge, including best practice condom use, PrEP for prevention and the concepts of U=U (Undetectible Equals Untransmissible).”
“The community wants leaders who are present. There is a growing and identified need for passionate leaders who have particular interest in managing their health, as well as purpose for improving health and social services to their community.”
Bretia Gordon, Ed.D, MPA she/her/hers 28
ACHIEVEMENTS Preparation Activities • Lead Academy members completed training’s with the consumer support specialist on how to read body language when in the community to know how to engage the audience participating in educational activities. • MAO Behavioral Health provided a series of training’s to help lead members develop strategies to deal with societal stigma while also beginning to process and overcome internalized stigma and how to respond to community remarks. • MAO’s Manager of Communication and Marketing provided ongoing technical support to the members in the development of campaign messaging and advertising, in addition to individualized guidance on public presentation and personal storytelling. • Gilead Community Services provided HIV education and helped lead members to develop a better understanding of their disease state that could be articulated to individuals when presenting for speaking engagements. • Lead Academy Members met once or twice monthly to foster the bonding process. During these meetings members provided feedback on personal experiences, brainstormed ideas and served as peer support to one another.
The Snowball Effect A third SPARK grant in 2020 initiated the kick-off of a statewide anti-HIV stigma campaign titled: Confronting HIV in Alabama:Live! Love! Life!, four LEAD Academy members made a short film as part of a global project with ATLAS2018 and LES ENFANTS TERRIBLES Foundation about their life with HIV, and then took seats in a series of virtual panel discussions after public viewing. Some 700 Alabama healthcare workers participated in the viewings and discussions. The openness of the panel members changed hearts and minds. The panel discussions were offered through Alabama AETC. 29 - PEER TOOLKIT
Revisiting No Look • The campaign was a collaborative effort by 13 community leaders to combat stigma and the idea that HIV has a look. • No Look grew into a conversation starter on what HIV looks like in rural communities. How can you tell who has HIV by looking at them?
NO LOOK
Lisa Johnson-Lett, BPS she/her/hers
TESTIMONIAL “As an advocate for change, it is my duty to educate- to aim to reduce HIV related stigma, discrimination, judgments, and criminalization. The more I learn the more I can assist and provide education and disseminate information to others. To advance change, we first have to be aware of people’s belief system around the “taboo” topic of HIV. We have to be able to connect to people and change the general public’s perception of HIV. HIV is not taboo and is no more a death sentence unless left untreated. When I first received my HIV diagnosis I didn’t understand HIV therefore I didn’t expect others to understand! I have to always remain teachable and remember my humble beginnings. It is through lived-experiences that teaches me to remain humble yet unapologetic: no more shaming or blaming myself or others. Through these twenty-six years I’ve triumphed and embraced HIV. I’ve learned I am a person beyond my status and that I can live Happy in Victory, that’s my HIV! Because I didn’t know and now I know, there is no excuse! I am a firm believer in health literacy and awareness. It is my legacy to enlighten others in hopes to re-frame the narrative and change the trajectory of HIV. It was the fear of the unknown that lead me to depression, anxiety, and panic attacks. It was the fear of living alone and hiding this secret of mine because I didn’t understand HIV, therefore I felt no one else understood. But today, I am the change and steadily advancing towards healthier outcomes. I still battle with anxiety and bouts of depression but I found advocacy. Through networks I have support. Today I have knowledge of HIV through education and my own lived-experience as the Subject Matter Expert where I can teach others an understanding of HIV in hopes to increase awareness as I advocate for change. Success starts with commitment and a plan. Join people like me. Make a plan. Get started!” 30
OPINION STATEMENT A Volunteer’s Perspective “I’m not a lawmaker, but I try to focus on doing what I can to help my community. When it comes to HIV, laws often gets in the way of our efforts to reduce new transmissions and prevent people from dying.
Michael Buchanan he/him/his
After I volunteered in vaccine research (AIDSVAX) in the late nineties, I started to look into HIV and the law and the barriers to effective responses to the spread of HIV and how to respond in a way that respects human rights. After reviewing all the information and listening to hundreds of people around the world, my conclusion was clear: harsh laws undermine rights, hinder treatment programs, and waste precious money. As a peer I call on our local governments to work with the civil society to ban all forms of HIV-related discrimination and violence, including against those most vulnerable to HIV. In 2022, there’s still a lot of work to do. The United States still has laws that criminalize HIV non-disclosure, exposure or transmission. In fact, these laws exist in more than 30 states and Alabama is one them! Roughly half of the world’s population lives under laws that ban or place restrictions on sex work. In more than 70 countries it’s still illegal for members of the same sex to have consensual sexual relationships. We know by now that these laws and policies are counter-productive in fighting the epidemic, and are discriminatory. it’s about time our federal government introduced legislation to get rid of laws in the United States that criminalize or discriminate against people with HIV. These laws often target and disproportionately punish sex workers, people who use drugs, people of trans experience, men who have sex with men, migrants and people of color. It’s time to bring those laws to a halt, and to base our policies on public health, not prejudice. Our laws should reflect our societal values as a nation, but on its own, the law can only do so much to end stigma, discrimination and social exclusion. In our own lives and communities we must actively advocate for policies and programs that unite rather than divide us. Once and for all, we must make everybody understand that respecting human rights goes hand in hand with fighting the HIV epidemic, and for that massage we need advocates, and peers and experts.”
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XYTARIUS: “I’m 21. I was diagnosed when I was 20.”
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BEHAVIORAL HEALTH PROGRAM INTEGRATION The idea for implementing Peer Support Programs in the Department of Behavioral Health can be found in the rational that peers provide assistance in daily management, social and emotional support, and linkages to clinical care and community resources. Peers provide a range of services that compliment formal health care services. Peer support programs for chronic disease self-management improve health outcomes, quality of life and adherence to treatment regimens. However, there are many factors that should be considered when exploring the integration of peer support services into a Behavioral Health Program.Some factors to consider include: X X X X X
Organizational Readiness Functional capacity Staffing and hiring needs Integrative Care Services Special Programs of Significance
Table 6 below provides a snapshot of Functional Considerations from a Behavioral perspective. Table 7, located on page 35 recaptures some of the Roles and Skills simplified into a bulleted listing of Staffing and Hiring Considerations and with some added considerations for when SMEs are expected to support roles with more of a Behavioral Health focus.
Table 6 Key Functions
Functional Considerations Descriptions
Assistance in daily management
Peer supporters help recipients of care to figure out how to implement behavioral life skills including communication skills, anger and stress management, conflict resolution and coping skills that they have developed with their behavioral health provider. Peers use their own life experiences to share how they self-manage day-to-day challenges and stressors. They can also help in identifying key resources, such as who to call and where to go for help when experiencing trauma and recovery triggers.
Social and emotional support
Through empathetic listening and encouragement, peer supporters are an integral part of helping service recipients to cope with social or emotional barriers and to stay motivated to reach their personal goals. The more we learn about the fundamental value of social support, the more we realize that simply “being there” can be of enormous help to people in managing disease and coping with behavioral health problems.
Linkages to clinical care and community resources
Peer supporters can help bridge the gap between the recipients and health professionals and encourage individuals to seek out clinical and community resources when needed.
Ongoing support, extended over time
Peer supporters successfully keep recipients engaged by providing proactive, flexible, and continuous long-term follow-up.They don’t talk to recipients every day, but they can be available for support when needed, which has proven to be invaluable for recipients who are in recovery from different addictions.
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OPINION STATEMENT
A Therapist’s Perspective
Elana M. Parker-Merriweather, Ed.S., LPC, BC-TMH she/her/hers “What we think impacts how we feel. How we feel impacts how we act. How we act is often influenced by our perceptions which can result in both positive and negative behaviors. It is important that we identify with how we feel so that we are accurately informed and intentional with our responses in all encounters. As individuals, we fulfill a multitude of different roles and responsibilities in life. As women, some of us embrace the constantly changing role of a working professional, a wife, a mother and a friend. A few of us extend ourselves beyond those roles to fulfill other responsibilities within our community, churches and Panhellenic organizations. The demands frequently become stressful and overwhelming which can impact our capacity to address the many life encounters that are unplanned and unanticipated. We should recognize when our minds and bodies are prompting us that something is not quite right or perhaps a change in thinking patterns is needed. Managing our thinking patterns in a culture that is driven by emotions and people feeling some type of way can be difficult to navigate. However, as individuals, we bring our own mental unfinished business to the table that we are juggling with how to resolve. We have to challenge ourselves to remember that everyone has a story to tell. Everyone has unresolved traumatic experiences from the past whether they are public knowledge or not. Everyone has experienced grief, loss and hurt along with an abundance of joy and happiness. Collectively, we must recognize when there is a need to reach out for assistance and support, which is not always the easiest thing to do. Frequently, I encourage friends and colleagues to identify and create that safe space to share difficult thoughts and unexplainable emotions. We have the innate ability to create the journey to the path in which we want to experience.We have the freedom and flexibility to add the things we need and to remove the things that cause harm. All of which influences how we think, feel, perceive and act. I recall a few significant principles from The Four Agreements. In this book, Don Miguel Ruiz challenged readers to remember the following: be impeccable with your word; don’t take anything personally; don’t make assumptions; and, always do your best. Let us all take time out to self-reflect and self-assess using the different principles. With peer support and engagement, a patient can start the journey to have a higher quality of life. Together, we can experience better behavioral outcomes if we adjust our thinking patterns which will positively impact how we act and feel.”
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Table 7
Staffing and Hiring Considerations • •
Qualifications
• • • • • • •
• • •
Knowledge and Skills •
• •
• • • • Roles and Responsibilities
• • • • •
Have a minimum of (2) years of continuous demonstrated recovery time from a diagnosed substance use or mental health disorder. Open minded and willingness to publicly share personal story and journey to recovery. Must be at least 18 years of age. Must be a High School Graduate or have obtained a GED. Must have effective written and oral communication skills. Must have a clear understanding of recovery from substance abuse and mental illness. Proficient in multiple forms of community outreach and public engagement. Must have the ability to work a set schedule with flexibility for adjustments based on recipient and program needs. Ability to assist in establishing support systems and engage with human service agencies and groups. Basic understanding of the behavioral health systems of care within the service region. Basic knowledge of consumer rights and advocacy. Ability to communicate effectively and connect with people who have been diagnosed with a behavioral health disorder. Serve as a source of motivation and inspiration. Ability to coach recipients on how to establish and maintain a social and physical environment that is supportive of recovery. Understand the unique experiences of persons struggling with substance use and mental health issues. Serve as a role model to recipients of care who are accessing behavioral health services. Serve as a valuable resource for information.. Serve as a mentor and source of motivation to assist recipients to understand their personal journey to recovery. Link recipients to community resources that assist with basic living needs to include food, clothing, transportation and shelter. Assist recipients in recovery with linkages to resources that help to address their personal goals to include gaining employment, going back to school, forming sober social relationships. Removing personal and environmental obstacles to recovery. Facilitating linkages to the recovery community by connecting people to 12-step programs, supportive services, and other recovery oriented groups and treatment services when necessary. Case management including advocacy, linkages and referrals to care.Facilitate peer support and self-help groups and activities for recipients of care.
The contents of the tables presented in this Toolkit derive content from HRSA, HHS, A Guide to Implementing a Community Health Worker (CHW) Program in the Context of HIV Care. Improving HIV Outcomes through the Integration of CHWs in Care Teams.
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Specialty Programs The integration of peer support services within behavioral health programs can be beneficial to recipients of care. MAOs Behavioral Health encounter numerous clients who have been impacted by unresolved childhood and traumatic life experiences that have impacted the capacity to function in adulthood. As a result,many recipients have difficulties with coping with life on life terms thus resulting in unhealthy thinking patterns and sometimes destructive behavior. This leads to mental health disorders and substance abuse disorders which can compromise their capacity to live healthy with HIV. Human service agencies who employ qualified staff including licensed therapists, case managers and support staff can integrate SMEs and other peer support staff to assist with the coordination and delivery of evidenced based services to recipients who are living with HIV and co-occurring disorders including mental illness, and/ or a substance use disorders. Through the integration of peers as subject matter experts and collaboration with qualified behavioral health providers, recipients can receive an array of coordinated services to assist with their recovery needs.
Recovery • • • • • • • •
Mental Health In several Programs of National and State Significance peer support and recovery services have been an integral part of addressing the opioid epidemic in Alabama. Through the Alabama Department of Mental Health, The Peer Support Services Program has been established for individuals who are seeking recovery from a substance use disorder. Recovery Organizations of Support Services (ROSS), a statewide peer support and recovery organization, was established to assist recipients of care who are diagnosed with a substance use and/ or opioid use disorder. ROSS employs trained Peer Support Specialist and Certified Recovery Support Specialist who complete the ADMH Peer Support Certification Training. Prospective peer staff participated in a fiveday intensive training that includes instruction, discussion, role playing and a final examination. Upon completion of the training, a Certified Peer Specialist can apply for jobs at State certified community mental health centers and substance abuse treatment centers. Certified Peer Specialists provide services in a recovery oriented environment to assist recipients on their personal journey to long term recovery from opioids and other substances.
Screenings and Assessments Service Coordinat ion Individual and Group Support Workforce Development and Training Peer Support and Recovery Services Case Management Referrals and Linkages Advocacy Crisis Intervention
“Peer Support offered a mental break from anxiety and depression because my peer coached me into feeling better before I developed a crisis that would spiral out of control.” J.T.,N.A.P.A.-WA 36
REFERENCES 1. Peers for Progress. Economic Analysis in Peer Support: Breadth of Approaches and Implications for Peer Support Programs: American Academy of Family Physicians Foundation; 2014. http://peersforprogress.org/wp-content/uploads/2015/04/150417-economic-analysis-inpeer-support.pdf (Accessed August 5, 2015) 2. Accleston, S.M., Ewing, H.M., Nixon, C.T., Bayham, M.E., Rall, K.E., Henley, J.S., Shields, S.L., & Moyhuddin, H.A. (2016). Developing the HIV workforce: Nashville, TN:Peabody College of Vanderbilt University.Retrieved from: (site). Peabody College, Vanderbilt University. https:// aidsetc.org/sites/default/files/resources_files/SEAETC_Strengthening_HIV_Workforce_11022016_ Final.pdf 3. Peers for Progress.Opportunities for Peer Support in the Affordable Care Act [issue brief]. http://peersforprogress.org/wpcontent/uploads/2012/12/140728-peer-support-and-the-affordablecare-act-2014.pdf [Updated June 2014.Accessed August 5, 2015] 4. HRSA, HHS, Aguide to implementing a community healthworker (CHW) program in the context of HIV care. Improving HIV Outcomes through the Integration of CHWs in Care Teams. https:// targethiv.org/sites/default/files/fileupload/resources/CHW_ImplementationGuide_508.pdf 5. The Ryan White HIV/ AIDS Program. https://hab.hrsa.gov/about-ryan-white-hivaids-program/ about-ryan-white-hivaidsprogram 6. Building Blocks to Peer Program Success:AToolkit forDeveloping HIV Peer Program.Multiple authors from American Red Cross, BU SPH, Center for Health Training, Columbia University, Harlem Hospital, JRI, Kansas City Free Health Clinic,WORLD. https://ciswh.org/resources/HIVpeer-program-dev 7. The Use of PeerWorkers in Special Projects of National Significance Initiatives, 1993 ? 2009 March 2010 U.S.Department of Health and Human Services Health Resources and Services Administration HIV/AIDS Bureau Special Projects of National Significance (SPNS). https://targethiv.org/sites/default/files/file-upload/resources/spns%20Use%20of%20Peers%20Report%20 2010.pdf 8. Denver Principles and MIPA,Meaningful Involvement of People Living with HIV/AIDS. https:// data.unaids.org/pub/externaldocument/2007/gipa1983denverprinciples_en.pdf 9. National JSI Healthy Start EPIC Center. https://www.jsi.com/project/national-healthy-start-epiccenter-supporting-healthy-startperformance-project/ 10. What is Peer Support? http://peersforprogress.org/learn-about-peer-support/what-is-peer-support 11. yes. J & Cahill M.Best Practice Framework. http://www.chronicillness.org.au/index.php/peersupportnetwork/best-practiveframework 12. Hibbard MR, Cantor J, Gundersen N, Charatz H, Gordon W, Brown M, Avner J, Lowenstein J, Berk W, Quick S,Weinberger J. (2005). Mentoring Partnership Program:Program Manual Planning and Implementing a Peer Mentoring Program for Individuals with Brain Injury and Their Families. http://icahn.mssm.edu/static_files/MSSM/Files/Research/Centers/Traumatic%20 Brain%20Injury%20 Central/ProgramManual.pdf 13. The Alabama Department of Mental Health (ADMH) is responsible for the regulation of Alabama’s public substance abuse services delivery system. X https://mh.alabama.gov/division-of-mental-health-substance-abuse-services/substanceabuse-treatment-services/ X https://mh.alabama.gov/wp-content/uploads/2021/01/2020-Annual-Report-Alabama-OpioidOverdose-and-Addiction-Council-Report-to-Governor-12.29.2020-FINAL.pdf X https://mh.alabama.gov/division-of-mental-health-substance-abuse-services/peer-programs/ X https://mh.alabama.gov/wp-content/uploads/2019/01/ Guidelines_and_Requirements_of_ the_AL_CertifiedPeerSpecialistsTrainingProgram.pdf
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APPENDIX A
- SAMPLE SME JOB DESCRIPTION
Position Title Subject Matter Expert Position Summary The Subject Matter Expert is a member of the HIV/AIDS community (PWH) who will provide intensive home and community-based intervention services to support linkage and retention of clients (PWH) in healthcare. The SME accompanies or meet individuals enrolled in care through services (as needed) to help to successfully navigate these systems and address barriers to successful retention in care. The SME will assist in outreaching to clients newly diagnosed and lost to care and support engagement, support clients in achieving optimum health outcomes through the identification and removal of barriers, conduct orientation to medical services, accompany to appointments, provide education, offer emotional support and linkage to support services and system, address language and cultural barriers and assist the team with screening for co-morbidities which can impact access and retention in care. Supervision Behavioral Health Counselor Supervisor Activities • Act as a member of the multidisciplinary Care Navigation Team to address the needs of clients. • Provide support to referred clients by assisting with navigation of medical appointments, orientation to care system/services, peer support and collaborating on addressing the needs identified in the joint service care plan. • Offer emotional (peer-to-peer) support and assist with linkage needed to mental health services. • Complete initial client intake (completing goal planning) and maintain enrollment of 20–25 clients per year. • Participate as a member of the multidisciplinary team weekly staffing. • Work with the Community Nurse to monitor kept medical appointments & CD4 counts quarterly to review each client’s adherence. • Help remove barriers to attending medical appointments by referring to appropriate professionals as needed such as mental health services, case management, substance abuse treatment, coordination of transportation, & delivery of on-site child care. • Conduct home visits as appropriate to execute plan of care for clients. • Maintain and complete required documentation for the client record for each care plan and intervention completed. • Complete trainings in the delivery of strength-based care and complete required orientation. • Attend CNT and medical provider staffing meetings. • Participate in the Ryan White Care Consortium Meeting. Minimum Qualifications • 21 years of age or older • High School diploma or GED • Cultural and linguistic competency • Access to reliable transportation • Basic computer skills • Knowledge about HIV/AIDS & client confidentiality Preferred Qualifications • Persons of color living with HIV • Prior participation in consumer leadership training
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APPENDIX B Program Area
Organizational commitment prior to peer hire
Peer job description
- SAMPLE PEER-LED SUPPORT PROGRAM PLAN
Activity Description
Who
Gain agreement of how peers will be part of multidisciplinary team through discussionof how peer worker will collaborate with team on Current team support group curriculum, (case manager, recruitment of client members clinic supervisor, Outline need for peer-led social worker, support groups by reviewing nurse etc.) narrative and other evaluative material that supports the needs of peers co-leading groups
Outline peer job description including expectations and goals Outline process for peer selection that includes staff input
Current Team
Time Frame
Make case for having peer co-lead groups Gain commitment from staff due to expressed need and documentation to 1 month support need Clear agreement of goals, operation of support group as well as referral system from providers and other client recruitment
2 weeks
Determine who within team is best fit for providing administrative supervision and supportive or clinical supervision Supervision
Determine how peer will be integrated into multidisciplinary team
Desired Outcome
Peer job description outlining skills and competencies needed to run support group and methods of contribution to team
Team presentation Current Team
2 weeks
Well designed supervision plan
Understand clearly defined job expectations and supports that need to be in place
Recruitment, hiring and compensation
Determine through established process of recruitment any existing clients who might be able to serve as peers. Outline hiring process with team (interviews, references, observations, etc.) Determine method of compensation influenced by funding, diability issues, etc.
39 - PEER TOOLKIT
Administrative supervisor, supportive or clinical supervisor and team
2 months
Hiring process that is equitable and meets organization needs Compensation outlined Peers are hired
APPENDIX B Program Area
Orientation
- SAMPLE PEER-LED SUPPORT PROGRAM PLAN
Activity Description
Determine and outline orientation plan for peer including introductions to all areas of organization, time period and learning expectations Provide samples of organization policies, procedures and confidentiality agreements
Who
Time Frame
Desired Outcome Make case for having peer co-lead groups
Gain commitment from staff due to expressed need and documentation to Supervisors and 1 month support need team Clear agreement of goals, operation of support group as well as referral system from providers and other client recruitment
Provide ongoing support/ mentoring
Training
Provide training for peers on how to facilitate a support group, communication styles, content
Supervisors and 2 peers months
Peers trained and ready to co-facilitate support groups
Ongoing peer development
Determine ongoing supervision system that follows the coaching model and addresses areas of development including skill training and job satisfaction
Supervisors
Creation of year-long staff development plan
Based on goals of program and job description Performance management/ program goal management
Ongoing
Goals for program being achieved through peer-led support groups
Determine ways to measure Supervisors and effectiveness of peer-led Ongoing Clients of peer peers support groups (i.e., client support groups satisfaction survey, retained in medical attendance sheets, knowledge care, i.e., 2 medical and practices survey, etc.) visits in the past 6 months
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LISA: “They don’t understand! They don’t understand HIV.”
FOR ASSISTANCE WITH THIS TOOLKIT Phone: (334) 280-3349 ext. 4006 Email: info@maoi.org
