Ryan White HIV/AIDS Program Part A Manual

The Ryan White HIV/AIDS Program recognizes the essential role of persons living with HIV/AIDS (PLWHA, especially those who are consumers of Part A services) in planning and implementing programs to successfully serve targeted populations. A hallmark of Part A participatory planning is meaningful and substantial involvement by PLWHA. 

PLWHA/consumer involvement requirements have increased since the passage of the original Ryan White legislation. The legislation requires at least 33 percent of members to be consumers—an increase from earlier provisions requiring at least 25 percent representation. To be included in the 33 percent, they must be consumers of Part A services but have no financial or governance affiliations with funded providers. In addition, consumer members must reflect the demographics of the HIV/AIDS epidemic in the EMA/TGA, thus paralleling the requirement that the entire planning council membership reflects the local demographics of HIV disease.

New Transitional Grant Areas (TGAs) established as a result of the 2006 reauthorization are not required to have planning councils. However, if the TGA decides against establishing a planning council, the CEO is required to provide documentation of the process used to obtain community input, particularly from PLWHA, in formulating the overall plan for priority setting and resource allocations.

Obtaining and maintaining effective PLWHA involvement is a major challenge. Barriers to eliciting and maintaining effective PLWHA involvement include time constraints, complex planning duties, and health concerns. Recruitment measures are needed to secure representation on the planning council, such as a variety of outreach methods to identify potential members. Retention measures are needed to help members stay engaged and participate fully, such as orientation and training, mentoring, and financial support for the costs of participating.

Section 2602(b)(1) requires each Part A planning council to "reflect in its composition the demographics of the population of individuals with HIV/AIDS in the eligible area involved, with particular consideration given to disproportionately affected and historically underserved groups and subpopulations."

Section 2602(b)(2) identifies the groups that must be represented on the planning council.

Among them are representatives of:

• "affected communities, including people with HIV/AIDS, members of a Federally-recognized Indian tribe as represented in the population, individuals co-infected with hepatitis B or C and historically underserved groups and subpopulations;" and

• "individuals who formerly were Federal, State, or local prisoners, were released from the custody of the penal system during the preceding 3 years, and had HIV/AIDS as of the date on which the individuals were so released."

Section 2602(b)(5)(C) requires that "Not less than 33 percent of the council shall be individuals who:

• "are receiving HIV-related services pursuant to a grant under" [Part A]; individuals are "considered to be receiving such services if the individual is a parent of, or a caregiver for, a minor child who is receiving such services."

• "are not officers, employees or consultants to any entity" receiving Part A funds "and "do not represent any such entity"; and

• "reflect the demographics of the population of individuals with HIV/AIDS" in the EMA/TGA.

Section 2609(d)(1) specifies that

• The chief elected official of a TGA established after the 2006 reauthorization "may elect not to comply with the provisions of section 2602(b) 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 for formulating the overall plan for prioirty setting and allocating funds from the grant."

Following are expectations of the HIV/AIDS Bureau's (HAB) Division of Service Systems (DSS) for planning councils in maintaining full and meaningful PLWHA participation.

• Recruitment and Training of PLWHA. Attaining diverse PLWHA representation requires outreach into many different communities, with the help of a variety of individuals and community groups. In meeting Ryan White Part A requirements for consumer representation, HAB/DSS expects planning councils to not only recruit diverse PLWHA as planning council members but also provide appropriate orientation and training and other supports that enable consumers to be fully active participants. Also required are understanding by planning council members of the importance of PLWHA participation and delineation of the roles of members, including PLWHA members, in planning council activities.

• Monitoring of the EMAs/TGAs Local HIV Epidemic to Maintain Reflectiveness. In meeting requirements for consumer as well as overall planning council Reflectiveness of the EMAs/TGAs HIV/AIDS epidemic, planning councils should establish a policy and procedures to keep membership abreast of the area's changing HIV/AIDS demographics.

• Engagement of Unaligned Consumers.The Ryan White legislation requires that the 33 percent of members of the planning council who are defined as consumers must be Part A clients (defined as receiving HIV-related services from Part A providers) and must be "unaligned" (defined as having no financial or governing interest in Part A-funded agencies, such as being officers, employees or paid consultants to Part A agencies). The law permits consumers to be volunteers at Part A-funded providers.
  
  NOTE: Of course, more than 33 percent of the membership of the planning council may be consumers, although the preceding definition must be followed for the purposes of meeting the percentage requirement. Any additional consumer members above the required percentage may be aligned with Part A providers.

• Consumer Representation of Recently Incarcerated Populations. Because of the high infection rate among the incarcerated, Congress has mandated that at least one seat on each HIV planning council be filled by either a recently incarcerated person or a representative of the formerly incarcerated. An individual who is formerly incarcerated must meet the following three criteria:

  1. Have been in Federal, State, or local prison and released during the preceding three years
  2. Have been HIV-positive on the date of release, and
  3. Be able to adequately represent the health care and support services needs of formerly incarcerated persons.
     

  A representative must have strong linkages with formerly incarcerated and the knowledge and experience to meet the third criterion.

• Self-identification as HIV-positive. HAB/DSS does not require that all consumer representatives self-identify at HIV-positive. It does expect that at least two consumer representatives will publicly identify themselves as PLWHA. 

Planning councils must set up planning council operations to help the planning council to operate smoothly and fairly, and to support strong PLWHA participation as members and as a part of the public. This includes such features as bylaws, open meetings, grievance procedures, and conflict of interest standards. (See below and chapters on Grievance Procedures and Conflict of Interest.) Effective systems and procedures make it easier for all members, including PLWHA, to participate actively.

The whole planning council is responsible for recruitment of PLWHA members. Planning councils often use personal contacts and other individual interactions as the chief means of PLWHA recruitment. Recruitment generally requires personal contacts with potential members, but outreach beyond individual networks is important in widening the search. Membership and outreach committees are ways of overcoming problems encountered in recruitment. Many such committees have identified the following useful practices in recruiting PLWHA:

• Establish Guidelines Regarding PLWHA Member Representation and Affiliation. cConflict of interest guidelines and grievance procedures should be clearly stated. The 2000 Amendments require that PLWHA counted among the 33 percent consumer members not be aligned with any Part A-funded service provider except as clients. This requirement is designed to ensure that they can represent the interests of people living with HIV/AIDS in the community without conflict of interest. The planning council needs to clearly define what constitutes an "unaligned" consumer.
  

• Formalize Recruitment, Nominations, and Outreach Procedures. The Ryan White HIV/AIDS Program requires that planning councils use an open nominations process to recruit members, and HAB/DSS has provided guidance on the components of an open process. Recruitment and nomination procedures should be formalized, usually summarized in the planning council's bylaws and further detailed and adopted as policy by the full council. Nominations procedures should address the special importance and challenges of recruiting "unaligned" consumers to the planning council. Then a Nominations Committee can coordinate recruitment based on this clear and publicly known process.
  

• Implement a Formal Outreach and Recruitment Process. Effective recruitment requires a formal outreach process including contacts throughout the community, not focused on a single organization or limited to individuals or groups personally known to planning council members. The responsibility for PLWHA recruitment should be shared and not placed primarily on the current PLWHA members. Methods of outreach include:

  • Contacts with a wide range of non-HIV-specific health groups, social service agencies, and PLWHA groups

  • Advertisements in local publications, especially publications targeting HIV-positive people, racial and sexual minorities, and underserved populations

  • Posting of opportunities for membership and need for PLWHA members on the planning council Web site.

  • Contacts with local community colleges and universities, and

  • Public meetings arranged in consultation with Part A service providers and PLWHA groups.

Outreach materials and programs should emphasize commitment to a diverse HIV-positive membership and be specific about populations that need to be represented.

• Communicate Expectations Clearly. Like other planning council members, PLWHA need to know what is expected of them in terms of time requirements, travel, roles and responsibilities, public visibility, etc. A job description is especially helpful. Planning councils should clearly state expectations that PLWHA be clients of Part A-funded providers and limitations regarding affiliation with AIDS service organizations (ASOs) or other Part A-funded providers. Recruitment materials should also clearly state what supports are available, such as expense reimbursement, transportation assistance, and child or partner care.
  

• State and Enforce Participation/Attendance Requirements. Procedures can ensure timely removal of members who do not participate, including consumers, and timely filling of vacancies with PLWHA who will become actively involved. They should also state policies relating to participation through the use of technology, such as teleconference calls, to enable PLWHA who are ill to participate in meetings.
  

• Make the Process eEfficient and Timely. If the nominations and selection process is lengthy, planning councils may have PLWHA vacancies for many months, and nominated individuals may lose interest. The selection process should be efficient in filling all membership slots, but especially PLWHA slots. Allowing PLWHA to serve as members of planning council-related committees who may then be upgraded to planning council membership is one way to minimize vacancies.
  

• Ensure That Members Reflect Changes in the Local Demographics of HIV/AIDS. The planning council should revisit its reflectiveness each time a new epidemiologic profile is prepared, then recruit with this information in mind.

Recruiting a diverse PLWHA membership is only the first step in effective PLWHA involvement; sustaining and maintaining effective PLWHA involvement require continuing attention. Many factors-related to the community, the planning council, and the individual-can cause a PLWHA member to become inactive or resign from a planning council. Ongoing recruitment is required because of the changing health status of PLWHA members, as well as to replace members who move, become consultants to (or employees of) a provider and therefore are considered aligned, change their employment or family status, get burned out, or change their community priorities.

Many factors that aid in PLWHA recruitment also contribute to their effective and sustained involvement. Outlined below, they include orientation, training, and mentoring to enable PLWHA to participate actively in deliberations and also make participants, including PLWHA members, feel valued.

Orientation. Orientation should occur prior to the new member's first meeting. New members should receive a practical orientation to their roles and responsibilities as planning council members, the workplan and timeline of the planning council, operating rules for meetings (e.g., bylaws, Robert's Rules of Order), and a list of topics to be addressed at the next meeting. They also need an understanding of the structure-committees, their mandates, when they meet, and their leaders' names and telephone numbers. This kind of orientation offers new members access to the people who are part of the system. The orientation should be supplemented with a member binder that includes copies of bylaws and policies as well as information about the system of care and the work of the planning council, but written materials are no substitute for an interactive orientation process.

Training. Further training can provide the technical knowledge and skills needed for full participation in the planning council's activities. Training should provide an understanding of the Ryan White legislation and implementation process, the service delivery system and provider profiles, and planning and other tasks (i.e., needs assessment, priority setting and resource allocation, comprehensive planning, evaluation). Understanding and accepting some of the constraints within service systems is important; orientation and training can help members understand processes and procedures for change and recognize complexities within the system.   

Training should prepare members to use and understand epidemiologic data and to participate actively in needs assessment, priority setting, and other key processes. HAB/DSS provides publications and other assistance to planning councils in providing training as a requirement of the Ryan White HIV/AIDS Program (see box).

Mentoring. Mentoring helps PLWHA, including new members, feel welcome, learn individual member perspectives, and become comfortable with planning council processes and interaction. 

Some planning councils assign each new member to a "veteran" member who takes special responsibility for making sure the new member understands the background and context of discussions and actions. Mentoring typically lasts for at least three months.

Relationship Building. Developing positive relationships between PLWHA and other planning council members can greatly enhance the planning process with mutual understanding and communication. Periodic retreats or other facilitated sessions build a sense of teamwork and trust among all the planning council members. Requiring PLWHA representation on all committees is another way to increase PLWHA involvement and participation.

Access to Information. PLWHA sometimes do not receive information important to them and the consumer community. Address this need by ensuring that materials from the grantee are shared with all planning council members and with PLWHA caucuses.

Financial Support. One of the greatest obstacles to PLWHA involvement in planning councils is the financial cost of participation. Costs of attending planning council meetings may involve transportation, child or partner care, and meals. Additional expenses may include sending and receiving faxes, making telephone calls, preparing materials, and accessing the Internet. These expenses can present a problem for PLWHA on disability or with very limited incomes, and for PLWHA who do not have jobs that provide them access to office equipment and supplies.

Financial support for PLWHA involvement needs to be addressed with respect to several different categories of issues:

• What kinds of Ryan White or other funds are available for use in providing financial support for activities related to PLWHA involvement?
  

• What kinds of expenses can be covered for PLWHA within legislative requirements regarding "reasonable costs?" and
  

• What allowable expenses need to be covered in order to ensure strong PLWHA participation in the planning council?

Under Part A grants, funds are available not only for administrative costs but also for Planning Council Support. Ryan White funds can be used to cover actual expenses for PLWHA such as child care, transportation, or other meeting-related costs.

Ryan White funds cannot be used to provide cash payments such as stipends or honoraria.

All planning councils need input from PLWHA who are not members of the planning council.

Only a small number of HIV-positive individuals are members of planning councils, and they cannot fully represent the entire consumer community. PLWHA should not feel that they are expected to know everything about people infected with or affected by HIV/AIDS. To avoid this additional-even if unintentional-pressure on PLWHA, planning councils can encourage broader community input. Either unilaterally, or in partnership with PLWHA caucuses, planning councils can: 

• Welcome community PLWHA to planning council and committee meetings

• Let PLWHA know about opportunities for input into Ryan White Part A needs assessment and comprehensive planning processes

• Involve non-planning council members on task forces and work groups so that they can have an active voice in the process without making long-term commitments, and

• Provide regular feedback to appropriate segments of the community. The following approaches have been helpful in various communities:

  • Open committees to nonmembers
    
  • Develop methods for involving those who don't attend meetings, such as a telephone call-in number to connect them to the meeting, enabling them to listen, provide information, or ask questions
    
  • Use publications, including mainstream media and newsletters of PLWHA caucuses and other community organizations, to request input and publicize hearings and community meetings
    
  • Hold town hall meetings to inform PLWHA about planning council activities and obtain input and feedback, and
    
  • Set up a formal communication structure with special PLWHA caucuses and support groups where planning council information and draft plans can be presented and input and feedback solicited.