Roles and Responsibilities of RWHAP Part A Planning

Roles and Responsibilities of RWHAP Part A Planning Councils/Bodies (PC/PBs) and Recipients Slides for Module 2 Topic: Consumer Roles 1

Consumer Roles in PC/PB Activities & Decision Making • • Legislative Requirements Central Roles of PLWH and Consumers in Planning Benefits of Consumer Involvement Maximizing Consumer Participation Opportunities 2

Training Objectives Following the training participants will be able to: • Explain the legislative requirements for consumer participation in PC/PBs • Describe at least 4 specific roles for consumers in PC/PB activities and decision making • Identify at least 3 ways in which the PC/PB and its individual members can encourage and support consumer participation

Legislative Requirements • Among the groups that must be included in planning council membership: – Representatives of "affected communities, including people with HIV/AIDS…” – “Nonelected community leaders” – “Individuals who formerly were Federal, State, or local prisoners…and had HIV/AIDS” when released • “Not less than 33 percent of the council shall be individuals who are receiving HIV-related services” through RWHAP Part A [§ 2602(b)(2)(G, H&M) and 2602(b)(5)(C)(i)]

Legislative Option for TGAs The CEO of a TGA: “may elect not to comply with the provisions” for establishment of a planning council “if the official provides documentation to the Secretary that details the process used to obtain community input (particularly from those with HIV) in the transitional area formulating the overall plan for priority setting and allocating funds…” [§ 2609(d)(1)(A)]

Legislative Requirements for “Unaligned” Consumers • Must be RWHAP Part A clients (receiving HIV-related services from a Part A-funded provider) • Must be unaligned/unaffiliated: “not officers [Board members], employees, or consultants” of RWHAP Part A-funded agencies • No prohibition on including individuals who volunteer for a Part A-funded provider – as long as they don’t receive stipends [§ 2602(b)(5)(C)(1)]

Other Legislative Requirements for PLWH Input • Priority setting and resource allocation (PSRA) must be based on factors including “. . . priorities of the communities with HIV/AIDS for whom the services are intended” • PC must “establish methods for obtaining input on community needs and priorities which may include public meetings. . . conducting focus groups, and convening ad-hoc panels” [§ 2602(b)(4)(C) and (G)] 7

Consumer Involvement in PCs versus PBs RWHAP Part A planning bodies that are not planning councils: • Do not have the legislative requirement that 1/3 of members be consumers of Part A services • Are expected to obtain input from consumers on community needs and priorities • Are encouraged by HRSA/HAB to have membership that is as much like planning councils as possible

Importance of Consumer Participation in RWHAP “The adaptability of the Ryan White HIV/AIDS Program over nearly 20 years is tied to its ability to be responsive to emerging trends in the epidemic. This responsiveness would never have been possible without consumer involvement at nearly every level of program administration—something so vital that it is now mandated by law. ” —Positive Voices: Living with HIV, A Living History (HRSA website)

Roles for Consumers and Other PLWH • PC/PB member • Member of a PLWH or consumer committee/caucus • Member of a non-governance committee, such as Needs Assessment • Member of a subrecipient’s Consumer Advisory Board • Member of a short-term task force or work group • Member of the public attending PC/PB or committee meetings • Participant in town hall or other public meetings • Needs assessment survey respondent or focus group participant • Clinical Quality Management (CQM) participant – responding to a consumer satisfaction survey or serving on a recipient’s CQM Committee

Benefits of Consumer Involvement • Links the PC/PB and the community it serves • Helps ensure that services reflect client needs • Provides a practical “user” perspective on service models, quality, and effectiveness • Real-time feedback on new and emerging issues • Helps in understanding the diverse service needs of various subpopulations • Other?

Maximizing Consumer Participation Opportunities The PC/PB can encourage consumer participation through bylaws provisions such as: • A PLWH committee or caucus open to both PC/PB members and non-members • A requirement that all committees include consumer members • Quorum requirements that consumers be present at PC/PB and committee meetings • Procedures for non-PC/PB members to serve on non-governance committees (like Needs Assessment)

Maximizing Consumer Participation Opportunities (cont. 1) PC/PBs can encourage consumer involvement through planning processes that call for: • Consumer input through regular needs assessment surveys, focus groups, and special studies • Regular feedback and input sessions in varied locations within the service area • Use of social media to announce meetings and events and report on activities and decisions • Telephone or other electronic access to meetings • Structured public comment periods at all meetings • Regular communication with existing PLWH groups

Maximizing Consumer Participation Opportunities (cont. 2) PC/PBs can also: • Actively publicize opportunities for participation • Identify and actively target specific PLWH subpopulations whose involvement is especially needed – with the help of PC/PB members from those communities • Provide leadership development opportunities for consumers • Other?

How Individual PC/PB Members Can Support Consumer Involvement • Serve as a liaison to a specific PLWH subpopulation or geographic community • Personally encourage participation in PC/PB town hall meetings and needs assessment activities • Represent the PC/PB at community or PLWH events • Invite other consumers to attend a PLWH committee or caucus meeting • Serve as a mentor for a new PC/PB member • Speak positively in the community about the benefits of active participation • Other?

Sum-Up • Legislation requires participation of RWHAP Part A consumers and other PLWH in the work of the PC/PB • 1/3 of voting members of a PC must be unaligned consumers of Part A services • PC/PB must obtain input from PLWH including consumers as part of its needs assessment • Many levels and types of participation open to consumers – all are important for sound planning and decision making

Optional Slides for Role Play Activity

Quick Activities to Apply Knowledge Following are 2 quick activities – a scenario and a discussion – to increase interaction during your presentation/ lecturette and help participants apply what they are learning to practical situations. Revise them if needed to fit your situation, and use them in small groups or pairs, or in the full group. Following is the title of each activity and where you may want to insert it: • Insert Scenario A: Impact of Consumer Participation after slide 11 • Insert Discussion B: Strengthening Consumer Membership after slide 15

Quick Scenario A: Impact of Consumer Participation For several years, your PC/PB has had trouble recruiting and retaining consumer members and getting other consumer input. Over the past year, your PC/PB has placed high priority on strengthening the Consumer Committee. It is now a standing committee, receives extensive training, and works closely with the Needs Assessment Committee on developing survey tools and identifying people with HIV who are out of care. This year the PC/PB had more applications than consumer member vacancies, and the CEO just made appointments. The Executive Committee agenda for this month calls for a discussion of how best to fully engage and retain these new members. • What are the 3 -4 most important actions the PC/PB should take to ensure that these new consumer members become active and participate fully in decision making? 19

Quick Discussion B: Strengthening Consumer Membership Think about your PC/PB’s current status regarding consumer membership, including percent of unaligned consumer members, training provided, level of engagement, and the number of consumers in leadership roles in committees and the PC/PB as a whole. Consider the first question and either question 2 or question 3, as assigned: 1. How well are you doing? 2. What changes in your Bylaws might increase consumer member participation? If you recently made Bylaws changes to support consumer membership, what were they? 3. What changes in planning processes might support consumer membership? If you have recently made changes, what were they? 20

Role Play on Consumer Roles Background for the role play: • PC/PB wants to increase consumer involvement at all levels • An existing group of consumers at a large clinic has expressed interest in PC/PB involvement • PC/PB leaders including Membership and Consumer Access (PLWH) Committee members arrange a meeting at the clinic

Preparing for the Role Play • Three groups will prepare separately for their roles: • PC/PB leadership • PC/PB members from Membership and Consumer Access (PLWH) Committees • Group of consumers interested in some level of involvement with the PC/PB • Groups have 20 minutes to prepare • Then representatives of each group will participate in the role play

Instructions for Groups • Choose someone to facilitate/coordinate your group in preparing for the role play • Decide how many people will represent you at the meeting • Choose your representatives • Use your Role Information Sheet to help your representatives prepare for the role play • If you are not one of the role play participants, be prepared to observe and share your observations

Post-Role Play Discussion • How did the role play go – from the perspective of participants? Observers? • What types and levels of involvement were discussed? • What issues or concerns were raised? • What lessons from this role play might be useful in encouraging enhanced consumer involvement in the PC/PB’s work?