Understanding and Refining the System of Care

1. Understanding and Refining the System of Care Roles of Peers and the Planning Process Tuesday, July 6, 1:00-3:00 pm EDT presenters: Harold J. Phillips Robert Hewitt

2. Introductions, Objectives & Overviews

3. INTRODUCTIONS:Project Consumer LINC Background Cooperative Agreement funded by HRSA The role of consumers in addressing unmet need and the unaware and the range of available strategies Understanding and Refining the System of Care - Roles of Peers and the Planning Process

4. OBJECTIVES:Webinar To provide a brief overview of the project including the 4 broad strategies Learn and understand Strategy #1- Understanding and Refining the System of Care Learn of the peer-led and peer-driven actions of 3 Part A programs have taken as a result of CLINC to better understand their system of care (Strategy #1) Understanding and Refining the System of Care - Roles of Peers and the Planning Process

5. TOPICS COVERED BY PANELWebinar Indianapolis: training and technical assistance is helping PLWH make changes to their system of care as this new TGA gains a better understanding of their roles and the system of care. Detroit: peers are being trained to lead focus groups in an effort to gather more information regarding barriers and needs New Orleans: an increased knowledge of the system is helping them make decisions about where to place peers at key points of entry and how standards of care can be changed to facilitate the use of peers. Understanding and Refining the System of Care - Roles of Peers and the Planning Process

6. TYPES of MODELSBrief Review of 4 CLINC Strategies • Volunteer/planning body-based: • Understanding and Refining the System of Care • PLWH Caucus/Committee • Staff/service-based • Linking PLWH into Care • Integrated Clinical Care Team Understanding and Refining the System of Care - Roles of Peers and the Planning Process

7. TYPES of MODELS4 Strategies • Two strategies involve consumers primarily as volunteers – as a part or extension of their roles in Ryan White planning and decision making: • Understanding and Refining the System of Care • PLWH Caucus/Committee • Two strategies involve consumers as provider staff, full- or part-time: • Linking PLWH to Care • Interdisciplinary Clinical Care Team Understanding and Refining the System of Care - Roles of Peers and the Planning Process

8. TYPES of MODELSFactors to Consider in Reviewing/Applying Models Your unmet need rate and profile Current PLWH leadership & participation Connections to PLWH communities Service opportunities for PLWH within existing system of care (current provider models) Capacity of planning body, grantee, providers Understanding of current system of care Commitment/readiness – of PLWH, planning body, grantee, providers Cost issues Contracting issues Understanding and Refining the System of Care - Roles of Peers and the Planning Process

9. Benefits and Challenges of Engaging Consumers to Link Other PLWH to Care

10. ACTIVITY A ONLINE POLL What are the most important benefits or “value added” of adopting consumer-based strategies? What do consumers offer that makes them valuable in such roles? Social Networks – Every PLWH in care knows 2-3 PLWH not in care Flexibility – Play many roles and can change to meet new needs. Assist in the transition to “chronic disease model” – Empower to manage HIV disease. Lower costs than other models Proven Effectiveness of community health workers in other healthcare situations Enhanced consumer involvement in community planning process Understanding and Refining the System of Care - Roles of Peers and the Planning Process

11. BENEFITS & CHALLENGESChallenges and Costs • Resistance to change • Some provider/clinician resistance to peers, especially in clinical settings • Procurement and contracting issues • Few documented models • PLWH health issues • Challenges of volunteering for PLWH with very limited incomes • Income limits for some PLWH • Need for initial and ongoing training • Need for ongoing supervision for employees, staff support for volunteers • Boundaries and confidentiality issues • Retention issues Understanding and Refining the System of Care - Roles of Peers and the Planning Process

12. BENEFITS & CHALLENGESUnmet Need and Unaware Effective Strategies for Addressing Each Must Originate From Estimating: What are the sizes of these populations Assessing: What are the needs, barriers and gaps of these groups? Note: there may be similarities but there are also differences Addressing: Implementing strategies, models, services designed to address both unmet need and those who are unaware and out of care Understanding and Refining the System of Care - Roles of Peers and the Planning Process

13. Learning & Exploring Strategy #1:Understanding and Refining the System of Care

14. LEARNING THE STRATEGIESSome Things to Look For Purpose and use of the strategy Key components What needs to be in place to make this strategy work Who needs to be involved – necessary roles for PLWH groups, planning body, grantee, providers Costs/resource needs Unanswered questions Understanding and Refining the System of Care - Roles of Peers and the Planning Process

15. Volunteer/Planning Body-based Strategies1. Understanding & Refining the System of Care

16. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Purpose To understand, assess, and make refinements in the system of HIV/AIDS care to make it easier for PLWH with various backgrounds and characteristics to: • Find out about available services • Get eligibility determined so they can enter the system of care • Obtain needed services and remain in care Understanding and Refining the System of Care - Roles of Peers and the Planning Process

17. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Approach • Engages PLWH in Ryan White planning bodies, committees, and caucuses in a leadership role to: • Identify and analyze barriers to access in the system of care – overall and for specific PLWH populations • Explore and recommend actions to reduce or eliminate these barriers and increase access to care Understanding and Refining the System of Care - Roles of Peers and the Planning Process

18. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Key Components/Steps Form a PLWH leadership group for action Analyze the current system of care Explore ways to overcome access and retention barriers Decide on needed changes in the system of care Agree on actions the planning body can take Recommend solutions requiring grantee action Understanding and Refining the System of Care - Roles of Peers and the Planning Process

19. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Models for Analyzing the Current System of Care Population Access Exercise Community meetings with providers and PLWH Lead focus groups to help gather more information regarding various population groups PLWH-led data review – unmet need and other needs assessment and cost & utilization data Understanding and Refining the System of Care - Roles of Peers and the Planning Process

20. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Decisions/Actions Planning Bodies Can Make Changes in priorities or resource allocations – such as funding or expanding resources for a service category Directives to the grantee (Part A) about how best to meet priorities – e.g., refined funding models Changes in Standards of Care – e.g., call for use of peer community health workers Understanding and Refining the System of Care - Roles of Peers and the Planning Process

21. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Decisions/Actions By or Involving the Grantee Service approach and contract changes to address identified barriers – requirements around outreach, intake, language/cultural competence, follow up Linked and jointly funded prevention and care outreach efforts Funding of new service models using PLWH as peer community health workers New links with prevention or other points of entry Understanding and Refining the System of Care - Roles of Peers and the Planning Process

22. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Ongoing Actions Led by the Planning Body Targeted community awareness building PLWH-led outreach and training Other social marketing Tasks often led by PLWH caucus/committee (Strategy #2) Understanding and Refining the System of Care - Roles of Peers and the Planning Process

23. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Requirements Roles: PLWH members of planning body or PLWH committee in lead role; planning body involvement & staff support needed Costs: Analysis & recommendations supported as part of ongoing planning body activities (administrative costs); implementation costs may involve program or administrative costs Training: Primarily related to understanding Ryan White & the system of care, using data, facilitation & communications skills Understanding and Refining the System of Care - Roles of Peers and the Planning Process

24. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Benefits Engages and strengthens PLWH involvement and leadership Increases visibility of Ryan White services Provides solid base of knowledge for action Often more cost-effective to change the system of care than to help individual PLWH overcome systemic barriers Identifies low-cost steps to improve access to care and improve services Helps prepare for adoption of new service models Understanding and Refining the System of Care - Roles of Peers and the Planning Process

25. VOLUNTEER-BASED STRATEGIES | STRATEGY #1Challenges Hard to implement if PLWH involvement is limited or weak Requires genuine outreach to PLWH not generally involved in the community planning process, non-Ryan White providers, and others whose voices are not already being heard Community meetings need to be well planned, coordinated, and facilitated Must avoid having non-PLWH dominate the information-gathering process Understanding and Refining the System of Care - Roles of Peers and the Planning Process

26. Indianapolis: Training & Capacity Building Technical AssistanceHelping Peers Understand their Roles and the System of Care

27. INDIANAPOLIS | STRATEGY #1Background Training and capacity building technical assistance for peers played key roles in helping members build more valuable skill sets towards understanding and applying public health, fiscal and program data. Indianapolis 1 of 5 Transitional Grant Area’s (TGA’s) established in 2006 Prior to 2006, unmet need in the area was estimated at 43.5%. Current figures put unmet need at 38.5% In 2009 the number of new clients at 340, re-enrolled at 640 and new clients/never been in care at 76 Indianapolis Council has a greater than 33% consumer make-up Understanding and Refining the System of Care - Roles of Peers and the Planning Process

28. INDIANAPOLIS | STRATEGY #1Building Blocks/Readiness • Membership is diversified as it is distinct with PLWH in key positions of leadership on the Council • Take seriously their role in being link to the community by participation in: • Community festivals • Health fairs • Workshops and forums discussing the council and Ryan White Services • Have been able to build on this commitment and energy of our PLWH Membership Understanding and Refining the System of Care - Roles of Peers and the Planning Process

29. INDIANAPOLIS | STRATEGY #1Results of CLINC Participation Those who attended CLINC training in Nashville returned to their own Planning Council and facilitated a similar CLINC Training helped entire council have the same understanding of what we needed to do. Difficult to say if CLINC Participation is a direct result but it did re-enforce and brought clarity to PLWH council members. Consumer committee has increased its membership PLWHA, through facilitated training and capacity building, continues to increase their knowledge and understanding of the various demographic breakdowns as well as the RW lexicon Understanding and Refining the System of Care - Roles of Peers and the Planning Process

30. INDIANAPOLIS | STRATEGY #1Results of CLINC Participation Our consumers have taken an active role in developing the needs assessment and comprehensive plan thereby becoming valuable partners in our health planning efforts Two-4 hour sessions to discuss data in-depth as part of priority setting and resource allocation. Over 75% of the participants were PLWH. Their input was also considered before moving to final approval. A series of community meetings to introduce resource guide, explain planning process, obtain additional data, and recruit or the council. Nearly 60 PLWHA attended. Understanding and Refining the System of Care - Roles of Peers and the Planning Process

31. INDIANAPOLIS | STRATEGY #1Changes Confirmation of essential needs and barriers found in the needs assessments used in FY 2010 planning process. Most needed services identified: access to primary medical care, medications, increased case management, and medical transportation. Directives regarding cultural and linguistic competency are now included Identified need to better market to the Hispanic/Latino community and increase program visibility, revision to the special populations were additional changes MAI to help improve retention and entry into care; EIS will help us identify and bring individuals into care Understanding and Refining the System of Care - Roles of Peers and the Planning Process

32. Poll Results Let’s Look at the results of our online poll………. Understanding and Refining the System of Care - Roles of Peers and the Planning Process

33. Detroit:Peer Led Focus Groups to Gather New Knowledge

34. DETROIT | STRATEGY #1Background The Detroit EMA covers urban Detroit, suburban, and rural areas so it is geographically diverse with the largest concentration of HIV providers found in Wayne County covering the urban area of Detroit. Detroit’s HIV Epidemic has impacts for the entire State Large numbers of those late to care, lost to care and out of care. Unmet need for those with HIV 46%, those with AIDS 32% according to 2009 Estimates. Stigma, lack of health education, and lack of knowledge of Ryan White all contribute to the problem Understanding and Refining the System of Care - Roles of Peers and the Planning Process

35. DETROIT | STRATEGY #1Building Blocks/Readiness Our Council has been asking the tough questions about services and the system We have been receiving additional training and technical assistance some though HRSA and some from our own budget We have expanded some of our needs assessment efforts, which have raised additional questions General feel among some of the membership that we need to do and think about things differently Understanding and Refining the System of Care - Roles of Peers and the Planning Process

36. DETROIT | STRATEGY #1Building Blocks/Readiness • Following CLINC training in St. Paul, • returned to give small presentation at full council meeting. • A more comprehensive presentation at November Consumer Committee meeting. • April 2010 Mosaica Team 2-day Training on CLINC Part A/B as part of a collaborative effort between the State of MI and Detroit Understanding and Refining the System of Care - Roles of Peers and the Planning Process

37. DETROIT | STRATEGY #1Results of CLINC • April 2-Day CLINC Training Attendees: ALL ABOARD • Detroit EMA Planning Council Members • Members of the Statewide Planning Body • Part A & B Grantee & State Prevention Staff • Providers from across the State • Consumers from across the State • Training confirmed the need for additional information regarding some special populations, those in areas outside of Detroit • Our planning council also needs more information on the services available outside of Wayne County and additional information on key points of entry Understanding and Refining the System of Care - Roles of Peers and the Planning Process

38. DETROIT | STRATEGY #1Change: Peers Led-Focus Groups • Mosaica Perspective + Comprehension + Increased Knowledge Base equals a valuable skill set: • Able to ask those questions of why one is out of care with empathy • Familiar with problems/issues related to entering care and enable us to get a deeper understanding of the issues • Help clients to relax and develop trust • Gives our consumer committee a sense of direction and purpose • Able to assist in creating recommendations based on data Understanding and Refining the System of Care - Roles of Peers and the Planning Process

39. DETROIT | STRATEGY #1Changes 30 hours focus group training (12 Peer Leaders) New to care/Returned to care in last year Working with pharmaceutical companies on venues, dinners and $25.00 gift card for those who participate Directives for CLINC Peer Navigator Models using 2009 carryover and waiting for HRSA approval in following categories: Primary Care, Medical Case Management, Early Intervention Services, Outreach, Non-medical Case management, Health Education/Risk Reductions, Treatment Adherence TA on reviewing standards of care and adjusting to allow peer models. Understanding and Refining the System of Care - Roles of Peers and the Planning Process

40. What Are Some Of The Other Ways That CLINC Participants Have Looked to Enhance Their Understanding of the System of Care Made Changes in the System Briefly share some of your experiences with us as we get ready to hear from our final presenters in New Orleans. Understanding and Refining the System of Care - Roles of Peers and the Planning Process

41. New Orleans: Increased knowledge of the system leading to better peer placement and changes in the standards of care

42. New Orleans | STRATEGY #1Background Participation in the CLINC workgroup led to the grantee’s development of a vision for a peer-led outreach intervention to connect to care those who know their status but do not access medical care. New Orleans has the second highest AIDS case rate in the nation (CDC, 2007). The unmet need estimate has improved but requires further attention. In 2007, unmet need was 49%; in 2008, it was 46%; in 2009, it was 43%. The 2008 Needs Assessment revealed: Consumer Need Rank #4 Referrals for Service with 9% Reported Consumer Gap; Consumer Need Rank #11 Counseling about living with HIV with 6% Gap; Consumer Need Rank #12 Opportunities to talk to HIV peers with 11% Gap. Understanding and Refining the System of Care - Roles of Peers and the Planning Process

43. New Orleans | STRATEGY #1Building Blocks/Readiness With a strong commitment to reduce unmet need through innovative programs and 49% of planning council members being HIV positive, the community was ready to take advantage of resources through CLINC. Since standard points of entry have more formalized mechanisms for bringing individuals into the Ryan White care system, custom tailored peer-driven interventions were desired by consumers. Lack of knowledge about basic health literacy and service navigation was repeatedly evident in the data. 17% of needs assessment respondents reported not knowing where to access HIV treatment.

44. New Orleans | STRATEGY #1Building Blocks/Readiness The council endorsed a peer-based model to improve service navigation and health literacy among the out of care population due to the anticipated cost-effectiveness and outcome-effectiveness. The engagement of PLWHA to deliver the intervention was strengthened by the council’s promotion of peer-based models. Consumer participation in routine council activities and comfort with system navigation and using data in decision making was a prerequisite. Other requirements: patience, persistence, commitment to completing the work necessary to implement a new project and enthusiastic peers! Resources are available through Mosaica and the Peer Center. Tools are available online related to training curriculums, job descriptions, confidentiality and boundaries, etc. Ongoing support and supervision needs must be factored into the planning process.

45. New Orleans | STRATEGY #1Results of CLINC The existing PLWHA leadership committee informed the development of the Hand in Hand project. The project leverages peer social networks as an intervention to identify, educate and bring into care individuals who can be most difficult to reach. Once certified, peers work with individuals who they personally know to be HIV positive, yet out of care. Peers share information related to health literacy and service navigation and help the individual make a medical care appointment and attend the first and second medical appointments with the individual. Once the individual has attended the appointments, the peers are thanked for their volunteer work with a gift card. 4 individuals have been linked to care in the 4 months since peers were certified.

46. New Orleans | STRATEGY #1Changes The collaborative Hand in Hand project, supported and implemented by the grantee and planning council, is a pilot project. Pending evaluation and demonstrated success, the model may become fully integrated. As a complementary planning activity, the PLWHA committee also worked with the Service Delivery Committee to update Standards of Care for select service categories, such as psychosocial support services, to explicitly promote the work of trained peers in clinic settings. Ensuring appropriately qualified peer participants was a key requirement. A training plan was developed which included a 3-day base training coordinated (based on the Training of the Trainer curriculum through the Boston University Peer Center) and facilitated by peers and an additional project-specific Hand in Hand orientation was conducted by staff.

47. New Orleans | STRATEGY #1Changes At this time, the Hand in Hand project is funded under Early Intervention Services as a pilot project being supported by Maintenance of Effort funds from the Grantee’s General Fund. With the Hand in Hand project, as envisioned by the Community Coalition, the primary cost was related to the 3-day base training requirement. The cost for space, meeting support, presenters and materials can vary depending on the number of participants and potential in-kind sponsors. The cost for incentives will vary depending on the number of successful referrals to medical care.

48. Questions for Our Panel I’LL START: FOR MOST OF YOU ADDITIONAL TA PLAYED A ROLE, HOW IMPORTANT IS TECHNICAL ASSISTANCE IN BEING ABLE TO IMPLEMENT THIS STRATEGY?

49. Questions for Our Panel ADDITIONAL QUESTIONS

50. CLOSING • FOR MORE INFORMATION ON ANY OF THE STRATEGIES • WWW.MOSAICA.ORG • ALSO WE WILL SEE YOU AT THE ALL GRANTEES MEETING IN WAHSINGTON IN AUGUST • THANK YOU TO ALL THE PANELIST TODAY Understanding and Refining the System of Care - Roles of Peers and the Planning Process