Chapter 2. What You Can Expect
How Do CARE Act Planning Bodies Work?
What Can PLWH Expect as Members of Planning Bodies?
How Do CARE Act Planning Activities Relate to HIV Prevention Planning Efforts?

After you have read this chapter, you should have a clearer understanding of how a planning body operates and how you can expect to be treated.

Once you make the commitment to join a planning body, what can you expect from the planning body and from your fellow members?

Use the following questions to assess whether you are getting the support you need-and to identify strategies for addressing deficiencies.

• Key Players in the Planning Process
  
• Planning Council Membership
  
• Main Tasks of the Planning Process
  
• Managing the Process
  
• Annual Planning Cycles
  
• Steps in the Planning Process

• Adequate Notice of Meeting Times and Dates
  
• Reimbursement for Certain Expenses
  
• Access to Basic Information
  
• Getting a Copy of the Planning Body's Bylaws
  
• Respect for Your Privacy and Confidentiality
  
• Consideration of Your Special Needs
  
• Fair and Clear Procedures for Resolving Issues

• Background on HIV Prevention Community Planning
  
• Similarities and Differences Between Prevention and Care Services Planning Processes
  
• Steps in the HIV Prevention Planning Process
  
• Coordination Between Local Prevention and Care Services Planning
  
• Collaboration on Early Intervention Services

• The Division of Service Systems (DSS), the part of the Federal government that is responsible for administering Titles I and II of the CARE Act
  
• The Grantee
  
• The Planning Body

HAB Division of Service Systems. The HIV/AIDS Bureau's Division of Service Systems (HAB/DSS) is the Federal office responsible for administering Title I and Title II throughout the country. The central office is located in Rockville, Maryland, though some Project Officers may be in other locations.

HAB/DSS Project Officers. Each EMA and State is assigned a Project Officer. Project Officers help the grantee and the planning body to do their jobs and make sure that they are running their program according to Federal law and rules. Project Officers regularly contact both the grantee and the planning body chairs by telephone and through site visits to the EMA or the State. More specifically, their duties are to:

• Monitor grantee compliance with the CARE Act and with Federal rules governing grant management
• Assist EMAs or States in the development of procedures to ensure the rapid allocation of funds in the EMA according to priorities established by planning bodies.
• Provide or arrange for technical assistance to the grantee and planning body.
• Strengthen a collaborative working partnership between the grantee and planning bodies.
• Communicate Federal and HRSA priorities and HAB/DSS program requirements.

The Grantee. The Chief Elected Official (CEO) is the person who officially is awarded the CARE Act funds. The CEO has ultimate responsibility for making sure that all the rules about using CARE Act funds are followed. For Title I funding, the CEO is in charge of the major city or county in the EMA, such as the mayor, chair of the board of supervisors, county executive, or judge. For Title II, the CEO is the governor of the State or territory (except in the District of Columbia, where the mayor is the CEO).

The "grantee" is the person or organization that actually carries out CARE Act tasks, whether that is the CEO, the public health department, or another agency that reports to the CEO. As the person who receives CARE Act funds, the CEO is technically the grantee of record. However, in most EMAs or States, the CEO gives responsibility for administering the grant to a local government agency that reports to the CEO. Generally, this agency is the health department, but nonprofit fiscal agents may also be designated to handle CARE Act funds. Many States designate one of the service providers as a "lead agency" as part of their planning process. This agency delivers services and has administrative duties similar to that of a grantee or fiscal agent. The health department or the lead agency sometimes are referred to as the grantee as well.

Grantees have the duty to administer the grant funds (use them correctly). They also have certain planning duties that they share with planning bodies.

The Planning Body. EMAs and States establish planning bodies to assess the needs of PLWH in the community and to develop a plan for how best to distribute CARE Act funds. Under Title I, the planning body is called a Planning Council. Under Title II, States may choose to have planning done by a planning body (often called a Consortium), by several regional consortia, or by a Statewide advisory group.

Title I EMAs are required to appoint a planning council in order to receive Title I funds. Although States are not strictly required to appoint a consortium before receiving Title II funds, as a result of the CARE Act Amendments of 2000, HAB/DSS requires States to conduct planning activities through a planning process, which can include planning bodies or other ways to get public input. In some cases, Title I and Title II planning bodies choose to share staff or work together to conduct some joint planning activities, or to consolidate into one entity in order to enhance HIV services planning. HAB/DSS does not specifically promote consolidation of Title II planning body and Title I planning councils into a single entity.

Every planning body has a designated leader, usually called the Chairperson, or Chair. This responsibility may be shared by two persons, called Co-chairs. HAB/DSS suggests that the chair of the planning council be elected by its members, but the chair is sometimes appointed by the grantee. The grantee or an employee of the grantee may serve as chair of the planning body but in those cases there must be a co-chair. Many planning bodies have found it works well to split the leadership responsibilities between two co-chairs, with one of the co-chairs being a PLWH.

Planning bodies may hire professional staff to coordinate the many duties and communications of their volunteer chairs and members. Planning body staff typically coordinate meeting arrangements, arrange for recording meeting minutes, distribute agendas and other records, handle reimbursements, and track planning body expenditures.

Planning Council Membership. Title I planning councils must include individuals from a variety of organizations and communities and reflect the local demographics of the epidemic. Particular consideration is given to including members with specific areas of expertise as well as disproportionately affected and historically underserved populations. No less than 33 percent of the planning council's members must be PLWH who receive HIV-related services. In the case of minors, these individuals can be their caregivers. These PLWH representatives must not be aligned. This means that they may not serve as an employee, board member or consultant of any entity receiving CARE Act funds.

Title II planning bodies do not have the same legislative requirements for membership. Nonetheless, Title II planning bodies are urged to follow similar guidelines in selecting members to achieve consumer membership, representation, and reflectiveness.

Main Tasks of the Planning Process
The planning process carried out by the planning body and its staff involves many complex tasks. In addition to administrative and procedural activities to make sure that the planning activities are conducted effectively, it is important to ensure that the work of the planning body meets the needs of the community. The CARE Act planning process includes the following elements:

• Find out what services are needed and what populations need care (Needs Assessment).
  
• Decide what services are most needed in the EMA or the State (Priority Setting).
• Decide how much money should be used for each of these services (Resource Allocation).
  
• Develop a multi-year strategy or plan on how to provide these services with CARE Act and other resources (Comprehensive Plan).
  
• Coordinate with other services (Coordination).

In addition to the above, Title I planning councils are required to evaluate how efficiently providers are selected and paid (Assessing the Efficiency of the Administrative Mechanism). These tasks are explained further in the section "Steps in the Planning Process," which follows the next section.

In order to carry out their duties well, the planning body and the grantee need to work cooperatively. Some planning body and grantee responsibilities are identified clearly in the CARE Act, while others must be decided locally. It is important that the planning body and the grantee work together and come to an agreement about their respective and joint duties. This agreement should be written and recorded in planning council bylaws or in a memorandum of understanding.

Managing the Planning Process
In order to efficiently conduct their business, planning bodies must select members, establish procedures to guide their activities, and follow a regular cycle or calendar of activities.

Membership Selection. Grantees and planning councils must use a clear and open process to choose additional planning council members or replace members whose term ends or who resign. Openness requires a public announcement when there are planning council member vacancies. The announcement should include the qualifications and other criteria that are considered when choosing members.

Once candidates for vacancies are identified, the planning council should forward their names to the CEO for consideration for appointment. The CEO retains sole responsibility for official appointment of all members to the planning council. Planning bodies may form a Membership or Council Development Committee to handle tasks such as recruiting and selecting people to fill vacancies. They also may set rules regarding attendance requirements and conduct at meetings.

Meeting Management. In order for any diverse group of individuals to work together, especially when deciding upon issues related to resources for essential health care services there must be pre-established rules that all participants understand-and believe are fair. By establishing procedures for how the planning body conducts its work, members can trust that the process will allow for all viewpoints to be heard. Elements of group process include establishing rules for how the planning body and any committees operate and how decisions will be made. It also includes establishing regular meeting times and locations that are known in advance to all members. At a minimum, bylaws should cover such areas as meeting discussion ground rules, decision making, conflict of interest, and grievance procedures.

• Discussion Ground Rules. Planning bodies develop rules that govern how their meetings are conducted. Such rules are important to ensure an orderly process. Meeting rules or "parliamentary procedures" ensure that decisions are reached in a fair and open manner, with input from all persons interested in particular issues. Robert's Rules of Order are the most commonly used meeting governance tool, but many planning bodies adapt those rules to their local circumstances and styles.
  
  
• Decision making. While it may be desirable for all members of a planning body to reach consensus-wherein everyone generally agrees on an issue and shares the same viewpoint-it is not reasonable to always expect consensus. It is important that the planning body have ways to openly discuss issues and hear a broad range of viewpoints, but it also must make decisions and move the process forward. Important principles of the planning process are that all members are given an opportunity to express their viewpoint, but that decisions are made by the majority. Planning bodies need to have clear procedures for voting and for providing members with opportunities to file a grievance. Even when members are in the minority and their views are overturned by the majority, planning bodies must ensure that they adhere to the rules and treat all members fairly.
  
  
• Conflict of Interest. The planning body must define conflict of interest and outline a procedure to make sure that decisions about priorities and funding allocations are based upon community needs-not the interests of individual planning body members. Planning body members who are involved with agencies that are competing for Title I funds may not make decisions related to that agency. Although this requirement does not apply to Title II, Title II grantees are encouraged to develop policies for handling conflicts of interest in their consortia.
  
  
• Grievance Procedures. The Title I planning body must develop grievance procedures to handle complaints about how funding decisions are made. A grievance is a formal complaint that a member makes when they believe that the planning body's rules have not been followed or that they have been treated unfairly. Grievance procedures must specify who is allowed to file a grievance, types of grievances covered and how grievances will be handled. The Title I grantee must develop its own grievance procedures as well, and they should be written to work with those of the planning body. (Title II grantees and planning bodies are urged to also have grievance procedures.)

Titles I and II Planning Cycle

Planning bodies fulfill their responsibilities by engaging in a planning process that consists of the following five steps:

• How many people are living with HIV disease in the community?
  
• Which areas of the community have the most PLWH?
  
• What is the average age of persons living with HIV disease?
  
• What are the major risk factors for HIV transmission in a particular community?
  
• How many people are living with HIV disease, broken out by racial/ethnic group? How does the size and percentage of each group compare to its size relative to the total population?
• What are the trends, in terms of who has been most affected by HIV, who is being affected now, and who is projected to be affected in the near future?

The next planning step is to determine the needs of various groups living with HIV disease through meetings, focus groups, surveys, or other methods. The CARE Act directs planning bodies to give special attention to identifying the needs of those who know their HIV status and are not in care. Planning bodies are to identify disparities (or differences in care) for various groups at risk for HIV infection and historically underserved populations. They should identify strategies, if needed, to build the capacity of HIV providers in historically underserved communities. The needs assessment should list the key "Points of Entry," which are agencies, organizations or places frequently used for social services and health care by individuals who know their HIV status and are not in care (e.g., homeless shelters, detention centers, emergency rooms). The needs assessment also identifies how CARE Act services should coordinate with other services, such as substance abuse and prevention agencies.

The needs assessment may be conducted by the grantee, the planning body, or an outside contractor. Whoever conducts the assessment, it is important to get many perspectives on how to conduct this activity. The planning body should receive and analyze the results.

HRSA/HAB provides a list of HIV related service categories, including health care and support services (see box below), with definitions of each service. Planning bodies must use a system to rank those services according to a process that has been explained and agreed to in advance. All members should participate in this process. Planning councils also must include program support, planning council support, and grantee administration among their priorities, but these categories are not ranked.

Step 3. Resource Allocation
After setting priorities, the planning body must make resource allocations (deciding how much funding will be used for what purposes). For example, the planning body can designate a specific amount of funding for primary care services for gay men of color. Title I planning councils cannot, however, pick individual agencies to fund, manage, or oversee Title I contracts. In contrast, Title II planning bodies are sometimes involved in contract management and procurement. This tends to occur in States where a consortium also serves as the local lead agency.

Planning councils may choose to use CARE Act funds for special projects, such as an evaluation of HIV services (program support) or assistance to help the planning body do its work (planning body support). Planning bodies that wish to hire staff or pay for consultants must identify this support as a priority in their priority setting process. They should describe how much money is needed and how it will be spent to help the planning council. In deciding how much planning body support to pay for, members should balance the need for such support against the need for services.

The planning body makes its resource allocation decisions based on many factors:

• Needs assessment
• Information about the most successful and economical ways of providing services
  
• Priorities of PLWH who will use services
  
• Coordination of CARE Act funds with other services and funding sources available in the community, such as local government or foundation contributions, and
  
• Need to develop the capacity of providers to deliver HIV services in historically underserved communities.

Planning bodies also work with the grantee to reallocate (or shift) funds from one service category to another if it appears that there is underuse or underspending of particular services. The grantee carefully monitors the spending rate of contractors and provides this information to the planning body. In some cases, the planning body will pre-authorize the grantee to shift a small percentage of funds without its review. Resource reallocation decisions usually occur in the final months of the fiscal year. Planning bodies also are involved in decisions to carry over any unused funds from one year to the next.

Step 5. Assess the Administrative Mechanism and Evaluate Services
The Title I planning council is responsible for evaluating the system that the grantee uses to distribute funds. This involves reviewing such elements as:

• How quickly the grantee pays these providers
  
• Whether the funds are used to pay only for services that were identified as priorities by the planning council, and
  
• Whether all the funds are spent.

The planning council also may choose to evaluate how well funded services are meeting community needs-or to pay someone else to conduct such an evaluation. Evaluation of the grantee's administrative mechanism or services is not a requirement for Title II. Nonetheless, Title II should consider and determine what evaluation activities are appropriate and feasible.

For more information about how planning bodies function, request a copy of the Planning Council Primer or the Priority Setting and Resource Allocation chapter in the Title I Manual and Title II Manual, which were produced by HAB/DSS for planning body members. To obtain a copy of either document contact, see the Tools page on the HAB website, contact your local grantee, or call the HRSA Information Center at 800-ASK-HRSA.

Nonetheless, as discussed below, there are some basic expectations that you can have of your planning body. If you are not provided with these things, then ask for them-or ask why they are not being provided.

Adequate notice of meeting times and dates. As a volunteer member with many other responsibilities, it is reasonable for you to know well in advance when meetings are scheduled. The CARE Act Amendments of 2000 include requirements that notice be given to the public of planning council meetings and HAB/DSS recommends that planning councils announce meetings in local newspapers and other media, as well as on the Internet. Some planning bodies hold regularly scheduled meetings at the same time each month. If so, you simply need to mark your calendar for the same time so that you do not schedule other activities. If you are not given proper notice of meetings, talk to the Chair about your concern.

Reimbursement for certain expenses. Reimbursement refers to paying you back for specific costs you must pay to participate on your planning body. HAB/DSS has issued several policies and guidelines on reimbursement of out-of-pocket expenses to members and non-members who support planning body activities. In addition, each planning body has its own reimbursement policies. Ask the staff or the Chair for a copy of the reimbursement policy and procedures for requesting reimbursement of expenses.

Planning bodies frequently reimburse members who are living with HIVdisease for transportation expenses associated with attending meetings, telephone charges if you are asked to participate on conference calls, and other expenses. You should be aware, however, that planning bodies must be able to demonstrate that they are applying their reimbursement policy fairly to all members and that they are reimbursing only valid expenditures. Therefore, you should check in advance whether an expense will be reimbursed. You should keep and be prepared to submit a receipt or other proof that you actually incurred the expense.

Access to basic information. As a member of a planning body, you cannot do your job effectively unless you have access to certain information. This could include the epidemiologic profile, past needs assessments or other data that may be obtained by the grantee, planning council, or any subcontractors that conduct research. You also should receive a copy of planning body meeting minutes so that you have a record of all issues discussed and major decisions made. The CARE Act Amendments of 2000 require that planning bodies post certified minutes or meeting summaries within a reasonable time after meetings. If you believe that you are being denied information that you need, discuss this matter with the Chair.

Copy of the planning body by-laws. The by-laws are the formal rules by which the planning body operates. By-laws may include other key information, such as the major responsibilities of the planning body and key dates of the planning cycle. When you join the planning body, if you are not given the by-laws, you should ask for a copy and review them carefully.

Respect for your privacy and confidentiality. Privacy can be a tricky issue for PLWH serving on a planning body. Because of the important role of PLWH, it may be necessary for your planning body to make public the names of PLWH members. Before you join, you should ask whether and how the planning body discloses information about its members, including information about HIV or other medical status. If you are not comfortable with its policies or procedures, you may need to consider participating in another way.

Consideration of special needs. Persons living with HIV disease may need special assistance participating in planning body meetings, due to their health status or another reason. If you have such needs, you should communicate them to the Chair and request that accommodations be made. This could include requesting that meetings be scheduled on days or at times when it is possible for you to participate, or that child care, translation services, or bottled water are provided at the meetings. While there may be reasons why all requests cannot be granted, you should not be afraid to request accommodations for any special needs that you have.

Fair and clear procedures for resolving issues. At times, individual planning body members may experience conflicts. This is understandable, given the diverse people involved in planning bodies, the passion they feel about HIV-related issues, and the differences in members' culture, education and other personal characteristics. The planning body should expect that members will treat one another with respect and behave in a professional manner. Members also can expect the planning body to establish a fair process for resolving disputes.

To prevent conflicts from arising, by-laws should provide the rules by which the planning body will operate. Additionally, formal rules should be in place specifying how the meeting is to be conducted. These rules are intended to make it possible for the planning body to consider issues, discuss areas of contention, and resolve matters through voting. If you believe that rules of procedure are not being followed or if you do not understand what the rules are, ask the Chair for information or technical assistance.

III. How Do CARE Act Planning Activities Relate to HIV Prevention Planning Efforts? TOP
As with HIV services funded by the CARE Act, Federal HIV prevention funding is distributed based on local planning and priority setting processes. Federal funds for HIV prevention and care services are appropriated by Congress separately, and are awarded to States and localities through different processes. Nonetheless, at the State and local levels, there is increasing overlap in services funded and in planning activities that prioritize which services are funded. Additionally, many of the same individuals (PLWH, health department staff, epidemiologists, community-based services provider representatives) become involved with both care and prevention planning.

Background on HIV Prevention Community Planning. The Centers for Disease Control and Prevention (CDC) implemented HIV Prevention Community Planning (Community Planning) in 1994. Community Planning is an ongoing planning process intended to improve the effectiveness of State, local, and territorial HIV prevention programs by strengthening the scientific basis, community relevance, and population or risk-based focus of prevention interventions. Community Planning Groups (CPGs), which include representatives of the health department, epidemiologists, PLWH, and other community members, engage in a comprehensive planning process for distributing Federal HIV prevention funds at the community level. Previously, health departments were required by Congress to direct approximately 70 percent of their Federal funding to counseling and testing programs. In response to concerns raised by community advocates that HIV prevention funding was not being directed to programs targeting the most urgent local needs, and a concern that Federal funding did not respond adequately to changes in the epidemic, CDC worked with health departments and community members to develop this participatory model for planning HIV prevention services.

In fiscal year 2001, nearly 80 percent of CDC's HIV prevention funds were distributed externally through cooperative agreements, grants, and contracts. The largest proportion of funding is awarded to State, local, and territorial health departments. A large proportion of this funding supports health department prevention programs based on comprehensive prevention plans developed by more than 200 local and regional HIV Prevention Community Planning Groups, in all 50 States, the District of Columbia, U.S. territories and five directly funded cities (New York, Los Angeles, San Francisco, Chicago, and Philadelphia).

Similarities and Differences Between Prevention and Care Services Planning Processes. Care and prevention planning processes are similar in many respects, but they are not identical. While the steps of the planning process are organized slightly differently, both planning processes develop an epidemiologic profile, conduct a needs assessment, engage in priority setting, develop a comprehensive plan, and carry out evaluation activities. The major difference in the role of the planning bodies is that CARE Act planning bodies allocate resources. In HIV prevention community planning, the allocation of resources is generally left to the State or local health department. Additionally, the scope of planning for CARE Act planning bodies is to provide services for PLWH, while CPGs are focused on providing prevention services to those at highest risk for HIV infection.

There also are some significant differences in the composition of CPGs and CARE Act planning bodies. CPGs usually have co-chairs representing the health department and the community respectively. CARE Act grantees may be planning body members, but CARE Act planning bodies are rarely chaired by health department staff and usually a separate staff and budget is provided to support planning body functions. This is due, in part, to the need to clearly delineate responsibilities for planning from those for procuring (or purchasing) services.

Like CARE Act planning bodies, CPGs require that members of the planning body come from a diverse cross-section of the community. Both CPGs and CARE Act planning bodies must reflect the HIV epidemic in the jurisdiction. Title I planning councils, however, are required to have a specific proportion of PLWH as members. Although each community uses a different formula for determining what communities are at the table, there are three key principles of participatory planning that guide formation of CPGs: parity, inclusion and representation (or PIR).

• Parity. The condition whereby all members of the planning group have equal opportunity and capacity to provide input and to participate, as well as an equal voice in voting and other decision making activities.
• Inclusion. Assurance that all affected communities are represented in the community planning process.
• Representation. Assurance that those who are representing a specific community truly reflect that community's values, norms and behavior.

Coordination Between Local Prevention and Care Planning. In some States and communities, local officials have established unified or joint planning processes in order to integrate planning for prevention and care funds. In these cases, members of a CARE Act planning body may also be involved in planning activities related to prevention. Regardless of whether or not a State or locality has taken steps to formally coordinate prevention and care planning, the planning activities do not occur in isolation. Title I planning council membership, for example, must include grantees of federal HIV prevention funding.

In recent years, both HAB and CDC have placed an increased emphasis on prevention and care coordination, and this extends to supporting efforts to coordinate planning activities at the State and local levels. Additionally, HAB and CDC support a variety of technical assistance activities, including trainings for PLWH conducted through partnerships with various national organizations. Many of these training initiatives have focused on helping local communities to coordinate prevention and care planning activities.

Collaboration on Early Intervention Services. Another area where there is significant overlap between prevention and HIV care services at the State or local level relates to early intervention services. These services are designed to help people learn their HIV status and develop a regular, ongoing relationship with HIV health care providers, as soon as possible after an individual becomes infected with HIV. Traditionally, HIV testing and associated services have been seen as the primary responsibility of prevention services providers. Increasingly, however, the Congress and the leadership of HAB have increased their expectations for CARE Act funds to support early intervention services. Before deciding whether to prioritize and fund early intervention services as a service category, Title I EMAs are expected to assess the need for early intervention services as part of their regular planning and priority-setting process. As part of this planning process, all EMAs should:

1. Identify local points of entry in the EMA for persons who know their HIV status and are not in care.
   
2. Include information on those points of entry as part of the EMA's comprehensive plan and use the information to guide determination of the best location and composition of early intervention services.
   
3. Carry out a resource inventory to collect information on current early intervention services providers in their communities, including those funded by other Federal programs, including other CARE Act Titles, and State and local governments.
   
4. Use this resource inventory and the points of entry referral information to assist the planning council in identifying gaps in early intervention services and other services for those not in care and determining how to best fill those gaps - which may include funding an early intervention service category.
   
5. If it is decided that early intervention services funding is necessary to increase access to care, integrate it into the EMA service delivery implementation plan and the planning council's priority setting and resource allocation process.

Consumers who wish to learn more about HIV prevention community planning should contact the following: National Association of People with AIDS (NAPWA) (202.898.0414); National Minority AIDS Council (NMAC) (202.483.6622); and the AIDS Alliance for Children, Youth, and Families (202.917-AIDS). These organizations conduct technical assistance and provide trainings to participants on prevention and care services planning bodies.

Chapter 3 provides examples of how some planning bodies operate and involve PLWH. It provides information on how health care works and how planning bodies make decisions about housing and substance abuse/mental health services. The chapter will help you sharpen your skills regarding new or challenging issues that some PLWH and other CARE Act planners have had difficulty working through.