Chapter 4
PLWH/Consumer Participation  TOP

Introduction

Title II CARE Act planning creates a participatory planning process to ensure that local health care and social service programs are responsive to the needs of persons living with HIV disease (PLWH). Unique PLWH perspectives are a major benefit of consumer involvement in such terms as design of appropriate services and identification of needs. Barriers to eliciting and maintaining effective PLWH involvement include time constraints, lack of understanding about 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.

Legislative Background  TOP

Section 2613(c) requires a consortium to submit an application to the State that, in part:

“(A) demonstrates that the consortium includes agencies and community-based organizations—

(i) with a record of service to populations and subpopulations with HIV disease requiring care within the community to be served; and

(ii) that are representative of populations and subpopulations reflecting the local incidence of HIV and that are located in areas in which such populations reside;”

“(B) demonstrates that the consortium has carried out an assessment of service needs within the geographic area to be served and, after consultation with the entities described in paragraph (2), has established a plan to ensure the delivery of services to meet such identified needs that shall include—

(iv) assurances that the assessment of service needs and the planning of the delivery of services will include participation by individuals with HIV disease;”

Section 2613(b) states that consortia, in order to receive Title II funding from the State, must provide the State with assurances that, in part:

“(2) Consultation.—In establishing the plan required under paragraph (1)(B), the consortium shall consult with—

(A)(i) the public health agency that provides or supports ambulatory and outpatient HIV-related health care services within the geographic area to be served; or

(ii) in the case of a public health agency that does not directly provide such HIV-related health care services such agency shall consult with an entity or entities that directly provide ambulatory and outpatient HIV-related health care services within the geographic area to be served;

(B) not less than one community-based organization that is organized solely for the purpose of providing HIV-related support services to individuals with HIV disease;

(C) grantees under section 2671, or, if none are operating in the area, representatives in the area of organizations with a history of serving children, youth, women, and families living with HIV; and

(D) the types of entities described in section 2602(b)(2).”

Section 2617(b) requires Title II applications to contain, in part:

“(5) an assurance that the public health agency administering the grant for the State will periodically convene a meeting of individuals with HIV disease, representatives of grantees under each part under this title, providers, and public agency representatives for the purpose of developing a statewide coordinated statement of need; and

(6) an assurance by the State that—

(A) the public health agency that is administering the grant for the State engages in a public advisory planning process, including public hearings, that includes the participants under paragraph (5), and the types of entities described in section 2602(b)(2), in developing the comprehensive plan under paragraph (4) and commenting on the implementation of such plan;”

Benefits of Consumer Participation  TOP

• Consumer Perspective. PLWH provide a critical consumer perspective on CARE Act service planning, delivery, and evaluation. This occurs within a diverse consortium membership that provides a forum for participants to interact.
• Reality Check. PLWH help keep the members of the consortium focused and on track by providing a first-hand perspective on issues facing PLWH and their families. PLWH can discuss their actual experiences in seeking and obtaining services.
• Help in Needs Assessment. PLWH can help ensure that needs assessments consider the needs of PLWH from differing populations and geographic locations, including those in and out of care.
• Identifying Service Barriers. PLWH can identify service barriers that may not be evident to others and can help consortia plan to overcome those barriers.
• Outreach. PLWH can help identify ways to reach the PLWH communities served, including minority and other special populations with unmet need for services.
• Quality Management. PLWH who are clients of CARE Act services can provide direct feedback on the quality of services. Their voices can help determine what services are needed.
• Community Liaison. PLWH provide an ongoing link with the community. They can bring community issues to the group, as well as help to bring research and care information to the community.

Recruitment of PLWH  TOP

Recruitment of PLWH members is a responsibility of the entire group. Groups often use personal contacts and other individual interactions as the chief means of PLWH 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 PLWH:

• Establish Guidelines Regarding Representation and Affiliation. This includes clearly-stated conflict of interest guidelines and grievance procedures.
• Formalize Recruitment and Outreach Procedures. These may be summarized in policies and procedures, providing the membership/outreach committee and the full group with a clear and publicly known process to follow, year after year.
• Implement a Formal Outreach and Recruitment Process. The responsibility for PLWH recruitment should not be placed primarily on the current PLWH members but rather shared. Outreach must be extensive, ongoing, and culturally competent. Recruitment requires contacts throughout the community, not focused on a single organization or limited to individuals or groups personally known to consortium members. Methods of outreach include:
  • Contacts with a wide range of non-HIV-specific health groups, social service agencies, and PLWH groups
  • Advertisements in local publications, especially publications targeting HIV-positive people, racial and sexual minorities, and underserved populations
  • Contacts with local community colleges and universities
  • Public meetings arranged in consultation with CARE Act service providers, and
  • 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. PLWH, like other members, need to know what is expected of them in terms of time requirements, travel, roles and responsibilities, and public visibility. A job description is especially helpful. Clearly state disclosure requirements and indicate limitations and expectations regarding affiliation with AIDS service organizations (ASOs) or other providers or membership preference for unaffiliated PLWH (i.e., noninvolvement with agencies with a funding interest). Recruitment materials should clearly state the supports that are available, such as expense reimbursement, transportation assistance, and child or partner care.
• State and Enforce Participation or Attendance Requirements. Procedures can ensure timely removal of people who do not participate and filling of such vacancies by PLWH who will become actively involved. They should also state policies relating to participation of alternates for PLWH members and the use of other technology, such as teleconference calls, to participate in meetings.
• Make the Process Efficient and Timely. If the nominations and selection process is lengthy, planning bodies may have PLWH vacancies for many months, and nominated individuals may lose interest. The selection process should be efficient in filling all membership slots, but especially PLWH slots. Use of alternates who may then be upgraded to membership is one way to minimize vacancies.
• Ensure That Members Reflect Changes in the Local Demographics of HIV Disease. As the demographics of HIV change, it becomes important for the membership to reflect these changes. Attaining diversity among PLWH representation requires carefully planned outreach into many different communities with the help of a variety of individuals and community groups. Policies might state that the PLWH membership will reflect the demographics of the HIV/AIDS epidemic in its service area.

Barriers to PLWH Recruitment  TOP

Recruitment of PLWH requires first understanding and then overcoming a number of barriers that prevent or discourage PLWH membership. Barriers may exist within the planning body, the community, and the person living with HIV disease. Following are frequently identified barriers, from the perspective of PLWH and planning bodies:

• Lack of PLWH awareness of CARE Act programs and planning bodies
• Lack of knowledge about how to become involved
• Lack of written criteria for membership
• Unclear member roles, responsibilities, and expectations
• Lengthy nomination and selection process
• Belief that PLWH members are not taken seriously
• Fear of disclosure of HIV status, sexual orientation, drug-using behavior, etc.
• Financial costs of participation
• Limited physical capacity
• Distrust of public programs and providers, and
• Lack of understanding and/or discomfort with formality and complexity of planning body procedures.

Maintenance of PLWH Involvement  TOP

Recruitment a diverse PLWH membership is only the first step in effective PLWH involvement. Sustaining and maintaining effective PLWH involvement requires continuing attention. Many factors—related to the community, the consortium, and the individual—can cause a PLWH member to become inactive or resign. Ongoing recruitment is required simply because of the changing health status of PLWH members, as well as to replace members who move, change their employment or family status, get burned out, or change their community priorities.

Many of the factors that help with PLWH recruitment also contribute to the effective and sustained involvement of PLWH. Outlined below, they include orientation, training, and mentoring to enable PLWH to actively participate in deliberations and also make participants, including PLWH members, feel valued.

Orientation. Orientation should occur prior to the first meeting. New members should receive a practical orientation to their roles and responsibilities as members, the workplan and timeline of the group, operating rules for meetings (e.g., bylaws, Roberts Rules of Order), and a list of topics to be addressed at the next meeting. They also need an understanding of the structure of 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 handouts, 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 consortium’s activities. Training should provide an understanding of the CARE Act legislation and implementation process, the service delivery system and provider profiles, and planning and other tasks (i.e., needs assessment, priority setting, resource allocation, comprehensive planning, evaluation). Understanding and accepting some of the constraints within service systems is an important area; orientation and training can help members understand processes and procedures for change and recognize some of the 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.

Mentoring. Mentoring helps PLWH, including new members, feel welcome, learn about individual member perspectives, and become comfortable with processes and interaction. Some groups 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 PLWH and other 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 members. Requiring PLWH representation on committees is another way to increase PLWH involvement and participation.

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

Financial Support. One of the greatest obstacles to PLWH involvement is the financial cost of participation. Costs of attending meetings may involve transportation, child or partner care, and meals. Additional expenses might include sending and receiving faxes, making telephone calls, preparing materials, and accessing the Internet. These expenses can present a problem for PLWH on disability or with very limited incomes, and for PLWH without access to office equipment and supplies.

Financial support for PLWH involvement needs to be addressed with respect to several different issues:

• What kinds of CARE Act funds are available for use in providing financial support for activities related to PLWH involvement?
• What are the State contracting restrictions and policies on reimbursement?
• What kinds of expenses can be covered for PLWH?
• What constitutes “reasonable costs?”

Title II grants allow for consortia administrative support. Federal guidelines allow CARE Act funds to be used to cover expenses for PLWH such as child care, transportation, or other meeting-related costs. In addition, contracted services can be used, such as transportation or child care services.

Consortia are permitted to provide budget support for PLWH participation in local conferences. However, State (grantee) contract guidelines may not permit use of the funds to cover expenses in this manner. Stipends or honoraria are not permitted as cash payments using CARE Act funds. If alternate funds are available for stipends, consortia may give PLWH the option of receiving or declining a stipend for services, since such income could affect eligibility for Medicaid coverage or for Supplemental Security Income (SSI) or other entitlements which may have income caps. Some consortia have found it preferable to reimburse allowed expenses instead of providing stipends for PLWH services. Funds can be used to help pay for the cost of participation, which may include transportation, meal costs, and office supplies. For further details, refer to the “Guidelines on Reimbursement of Individuals Serving on a Ryan White Title I Planning Council and/or Title II Consortium” (DSS Program Policy Guidance Number 9), which are included in this manual and available on the HAB website.

Barriers to Sustained PLWH Participation on Planning Bodies  TOP

Planning bodies and PLWH have identified many of the following obstacles to sustained PLWH participation.

Barriers within Structures and Processes

• Lack of clearly defined roles and responsibilities
• Lack of orientation and training or mentoring of PLWH members
• Poor relationships or conflict within the planning body
• Lack of demonstrated respect for PLWH input
• Lack of communication and access to information
• Bureaucratic processes and long delays before results are seen
• Unrealistic time/commitment expectations given PLWH capacities at various stages of illness
• Lack of ongoing supports such as accessible meeting locations, expense reimbursements, rest breaks during meetings
• Financial costs that are not reimbursed
• Lack of support for members with special needs (e.g., visually or hearing impaired, limited English proficient)
• Lack of flexibility regarding participation (not allowing alternates or proxies, no telephone hook-ups)

Community Barriers

• Discrimination against people with HIV/AIDS
• Discrimination against sexual minorities
• Discrimination against people of color
• Lack of or inadequate commitment to meeting needs of PLWH
• Large geographic areas requiring time-consuming, long distance travel

Personal Barriers

• Poor health
• Burnout
• Competing family, professional and/or personal demands on time
• Discomfort with processes and requirements of the planning body
• Change in affiliation

Nonmember Involvement

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

• Welcome community PLWH to meetings and subcommittees meetings
• Let PLWH know about opportunities for input into CARE Act needs assessment and priority-setting processes
• Develop small work groups so that people 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
• Enable anyone to become a voting member of a committee after attending three consecutive meetings, even if he or she is not a member of the planning body
• Develop methods for involving those who do not 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 PLWH caucuses and other community organizations, to request input and publicize hearings and community meetings, and
• Set up a formal communication structure with special PLWH caucuses and support groups where consortium information and draft plans can be presented and input and feedback solicited.

REFERENCES  TOP

Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB). DSS Program Policy Guidance No. 9: Guidelines for Reimbursement of Individuals Serving on a Ryan White Title I Planning Council and/or Title II Consortium, June 1, 2000.

HRSA, HAB. Training Guide: Preparing Planning Body Members. Rockville, MD: U.S. Department of Health and Human Services, 2002.

HRSA, HAB. Consumer Digest for the CARE Act. Rockville, MD: U.S. Department of Health and Human Services, 2002.