4. PLWH/Consumer Participation
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.
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;”
When considering ways to increase involvement of PLWH in CARE Act activities, assess what PLWH involvement is wanted. Roles for PLWH include regular membership, participation in a PLWH caucus, and other kinds of participation.
Success might be realized with recruiting PLWH, but retention as active participants can be harder. Often, this is because PLWH roles have not been clearly defined. Members may not have received orientation or training or other necessary support. Maintaining active involvement of PLWH relates to effective utilization of the skills and resources that PLWH bring to the planning process.
It should never be assumed that the only way a consumer can participate is to be an active member. Some consumers do not have the skills to participate or choose not to participate because they prefer not to assume the responsibilities of active membership. However, their voices and participation are just as valuable to the overall planning process as PLWH who are active members, sit on committees, and participate in mandated activities. Some groups have active consumer caucuses that meet separately and send a representative to the group as a member. Others access local support groups for feedback at targeted points in the planning process. For example, the consumer caucus or support groups may participate in the needs assessment, review a draft of the priorities being recommended from the needs assessment, and review a draft of the final comprehensive plan. Further, PLWH input is often utilized as one component of evaluation (client satisfaction).
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:
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:
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:
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.
RESOURCES FOR TRAINING CONSUMERS
To facilitate the full participation of consumers in the planning bodies, HAV/DSS provides training opportunities and has developed guides including:
In addition, HAB maintains cooperative agreements with various national organizations that prepare training resources and conduct leadership and skills-building training for consumers who are members of CARE Act planning bodies.
Planning bodies and PLWH have identified many of the following obstacles to sustained PLWH participation.
Barriers within Structures and Processes
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:
The following approaches have been helpful in various communities:
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.