Ryan White HIV/AIDS Program Part A Manual

Planning is central to the Ryan White HIV/AIDS Program's focus on local and State decision making in developing HIV/AIDS care systems. Each grant year, planning councils establish service and resource-allocation priorities and implementation plans to address them. Comprehensive HIV services planning goes beyond this annual process and provides a road map for developing a comprehensive and responsive system of care over time. It provides an opportunity for the planning council to step back from short-term tasks to review the current system of care and envision an "ideal" system of care, then develop a three-year plan for working towards it. It does so by reviewing needs assessment data, existing resources to meet those needs, barriers to care. and consulting with the community to obtain their perspectives about the system of care. Additional useful information to review includes performance measure and evaluation data (including data on cost effectiveness and outcome effectiveness of services) and contract monitoring data.

This information is used to set out long-term goals, objectives, and strategies for delivering services. The plan also reflects the community's vision and values about how best to deliver HIV/AIDS care, particularly in light of limited resources.

Participatory comprehensive planning often has tangible benefits that help enhance program implementation. Planning can help a group develop decision-making criteria and contingency plans, preparing the planning council and the community for changes in the epidemic or resources. Planning also places services and systems of care in the context of many funding sources. By providing information, the process allows planning councils to examine ways to increase the efficiency of service delivery and to maximize the use of existing funding streams.

Comprehensive planning helps answer four basic questions:

1. Where are we now? (What is our current system of care?)

2. Where do we need to go? (What is our vision of an ideal system?)

3. How will we get there? (How does our system need to change to assure availability of and accessibility to core services? What steps can we take to develop this ideal system?)

4. How will we monitor our progress? (How will we evaluate our progress in meeting our short- and long-term goals?)

Section 2602 (4)(D) of the Ryan White legislation requires EMAs/TGAs to "develop a comprehensive plan for the organization and delivery of health and support services described in section 2604 that:

1. "includes a strategy for identifying individuals who know their HIV status and are not receiving such services and for informing the individuals of and enabling the individuals to utilize the services, giving particular attention to eliminating disparities in access and services among affected subpopulations and historically underserved communities, and including discrete goals, a timetable and an appropriate allocation of funds;

2. includes a strategy to coordinate the provision of such services with programs for HIV prevention (including outreach and early intervention) and for the prevention and treatment of substance abuse (including programs that provide comprehensive treatment services for such abuse); and

3. is compatible with any State or local plan for the provision of services to individuals with HIV/AIDS."

Multi-Year Comprehensive Plans and Relationship to Implementation Plans. Each year, planning councils establish priorities and allocate resources, which are then turned into goals and objectives in the funding application's annual implementation plan. Comprehensive HIV services planning goes beyond this annual process. The comprehensive plan should drive development of goals and objectives in the annual implementation plan. In turn, the annual implementation plan is a tool to achieve goals and objectives in the comprehensive plan.

EMAs/TGAs are required to submit an updated comprehensive plan based on an updated needs assessment. HAB/DSS expects updating of the comprehensive plan to occur every three years, at a minimum. The planning council has lead responsibility for developing the plan, but the grantee shoiuld also be actively involved, and some of the goals and objectives should involve grantee tasks and responsibilities.

Use of Part A Funds for Planning.  Grantees fund planning council support activities out of their administrative budget, using formula and supplemental grant funds. Comprehensive planning activities can be funded under planning council support.

Focus of Comprehensive Plans. HAB/DSS expects EMAs/TGAs to develop multi-year comprehensive plans that will:

• Address disparities in HIV care, access, and services among affected subpopulations and historically underserved communities

• Ensure the availability and quality of all core medical services within the EMA/TGA.

• Address the needs of those who know their HIV status and are not in care as well as the needs of those who are currently in the care system.

• Address clinical quality measures.

• Include strategies that:

  1. Identify individuals who know their HIV status but are not in care and inform these individuals of services and enable their use of HIV-related services

  2. Eliminate barriers to care and disparities in services for historically underserved populations

  3. Provide goals, objectives, and timelines (as determined by the needs assessment)

  4. Coordinate services with HIV prevention programs including outreach and early intervention services, and

  5. Coordinate services with substance abuse prevention and treatment programs.

Relationship to the SCSN. The comprehensive plan must be compatible with existing State and local service plans including and in particular the Statewide Coordinated Statement of Need (SCSN).

While there is no single approach to comprehensive planning, all planning bodies must develop a planning process and outline planning tasks. The foundation for this is a clear understanding of what the planning body wants to accomplish; the key players who should be involved; and how the completed plan will be used.

Generally, a sound Part A comprehensive planning process and plan:

• Balance openness and inclusiveness with timely creation of a final product

• Are developed in a coordinated manner with the statewide comprehensive Part B plan

• Provide guidance to the planning council in making decisions and developing contingency plans

• Build upon and are coordinated with the planning council's needs assessment process

• Reflect coordination with the planning council's priority-setting and resource-allocations process

• Balance service needs with the resources available to meet them

• Include monitoring and evaluation guidelines to help the planning council self-assess the planning process, and

• Measure progress towards comprehensive plan goals and objectives (e.g. through use of client-level data, use of data in evaluation, and measurement of clinical outcomes).

Steps in the planning process are as follows:

• Plan to Plan

• Data Gathering and Analysis

• Plan Preparation, Approval, and Dissemination

• Implementation of the Plan

Each is described below.

Plan to Plan

During this phase, the planning council committee (usually a standing committee of the planning council) finalizes the goals and objectives for the planning process. The committee determines the questions to be posed about the HIV care delivery system in the area and the tasks required to generate answers to these questions. The planning committee develops a plan and criteria for collecting and analyzing data, makes recommendations to the planning council about a timeline and budget for the planning process, and assigns responsibilities for completing planning tasks. Some planning councils hire consultants to assist with planning, if resources are available; sometimes it is possible to obtain pro bono planning assistance from a local university or public agency.

Data Gathering and Analysis

Because the comprehensive plan is a guide to help the planning council and EMA/TGA respond to the service needs of PLWHA, these needs first must be identified. Typically, the planning council uses information from its epidemiologic profile and other needs assessment data, as well as grantee cost and utilization data, as inputs to the planning process.

If the data have already been collected, they need to be reviewed and organized for use in the development of the plan. Sometimes, if the needs assessment was incomplete or is outdated, additional information must be collected for the development of the plan. If more information is needed, instruments to collect data must be developed and pilot tested. Existing data—called "secondary data"—such as epidemiologic data, can be obtained from public health agencies and published and unpublished studies. Original data collected by the planning council—called "primary data"—can be gathered through surveys, interviews, focus groups, and other methods.

The planning committee can collect data with the assistance and input of the State, members of the planning committee, the needs assessment committee, planning council members, or paid consultants who have expertise in this area. The planning council can hire outside consultants to carry out the data collection and analysis. If a consultant is hired, the planning council still retains responsibility for the planning process and needs to supervise the work of the consultant and ensure that the voices of PLWHA are heard.

Because the EMA's/TGA's needs assessment will generate much of the needs and services information to be used in the comprehensive plan, needs assessment and comprehensive planning committees both benefit from coordinating their efforts.

The information obtained through primary data gathering and review of existing data is then reviewed and discussed in terms of strengths and limitations, and usefulness in answering the questions about the HIV care delivery system in the EMA/TGA. Data are analyzed and formatted, and results are presented to the planning committee and planning council members in a manner that is easily comprehensible and useful in decision making about service priorities and major HIV service delivery issues.

Plan Preparation, Approval, and Dissemination

Once the available data have been gathered and analyzed, it is time to outline and prepare a plan document. The planning council receives a presentation of key information, usually in an open meeting to which the public is invited. The draft plan is drawn up by staff or consultants, then reviewed by the planning committee or by the entire planning council and revisions are made as needed. The comprehensive plan must be approved by the full planning council.

Once the plan is presented, a dissemination plan is developed to ensure that key stake holders receive copies of the plan and have an opportunity to provide feedback and assistance in implementing the plan. The planning council may receive public comments and feedback. about the plan formally at public hearings or through other venues such as community meetings, PLWHA caucuses, and provider forums. PLWHA and other community members of the planning council have a vital role to play in helping the planning council obtain community input, including identifying key contacts in the community, organizing community forums, and serving as a liaison with PLWHA caucuses.

Implementation

The last phase is to put the plan into action. In the implementation phase, the planning council uses the plan to make decisions about service priorities, resource allocation, and other critical service delivery issues.

The planning process should help guide planning councils to consider services and systems of care in the context of a range of funding sources. By gathering information about existing services and methods of service delivery, the planning process allows the planning council to examine ways to increase access to care for specific populations, the efficiency of service delivery and the use of existing funding sources. The plan should prepare the planning council to respond appropriately to changes in the epidemic and to react efficiently to changes in the availability of resources.

A comprehensive plan should cover a three-year planning cycle from the start of the planning process through implementation. However, changes in the epidemic or legislation may render some plans obsolete in a shorter time frame.

Most service priorities and allocation of resources are conducted on an annual basis. The comprehensive plan should provide goals and objectives that guide and are consistent with the annual priority-setting process.

Implementation requires monitoring the achievement of the plan's goals and objectives and assessing the effectiveness and quality of services on an ongoing basis. The schedule or vision for the plan can be adjusted and implemented along the way on an annual basis. It might take three to six months to develop a "plan to plan" (a schedule for major planning activities and tasks), and thus have a clear blueprint for planning. When writing the goals and objectives for the plan, the planning council needs to think about needs and resources three years down the road. Epidemiologic projections should cover at least a three-year time frame.

Community Involvement

The comprehensive planning process should include input from members of the planning council and the community. Increasing the level of community involvement in the needs assessment and planning process may be a challenge, particularly in rural areas. Identifying and involving the right mix of people is crucial.

Creative use of incentives can be the key to increasing community participation. For example, providing transportation to meetings may be especially helpful in rural areas where long distances are involved. However, this must be done in the context of the HAB policy regarding expense reimbursement. Community resources can be used for other expenses, such as refreshments, gift certificates and vouchers for services. These incentives may encourage attendance at meetings or focus groups.

Preserving confidentiality may be a major challenge to widening community participation, particularly in rural areas where PLWHA and their family members are often very reluctant to identify themselves. Planning bodies cannot plan for PLWHA unless they plan with them.

Planning bodies have identified ways to protect confidentiality by enabling PLWHA and their families to provide input without giving their names. A telephone number can be publicized, so that PLWHA can call for anonymous interviews. Similarly, a group or individual in the PLWHA community can make arrangements for PLWHA to call in anonymously for informational interviews.

Participation Issues

The comprehensive planning process is demanding and requires a diverse group to work together to achieve consensus regarding both the planning process and the final document. A diverse group of individuals may not share cultural or social backgrounds, professions, sexual orientation, HIV status, or work styles. They are likely to need some time to begin working together effectively.

Planning council members may contribute to the planning process in different ways and with varying degrees of intensity. The diversity of the planning council membership can enhance, not hinder, the planning process if appropriate steps are taken to address potential challenges related to member participation. For example, consider using small short-term workgroups to focus on specific tasks in order to lessen burden on the whole group.

Planning councils should consider the following factors before embarking on the planning process.

Degree of Diversity of the Planning Committee

The more diverse the planning committee, the more inclusive and representative your planning process. The group should not be limited to members of the planning council. It should include community members who can enhance the expertise of the group.

Varying Levels of Education and Expertise in HIV Service Delivery

Participants working on comprehensive planning bring different levels of education and expertise. There may be participants who have not been involved with HIV-related services for very long or who may be less familiar with committee meeting procedures and Ryan White legislation. PLWHA who have known about their HIV status for several years and provider personnel, on the other hand, may be very familiar with infected communities, as well as policy and resource networks. If the planning committee consists of a significantly diverse group in terms of expertise and experience, it is advisable to consider these differences when setting the timeline for planning.

Special Needs of PLWHA

Some PLWHA members may not have the same amount of physical energy as other planning council members to devote to the planning process. Planning bodies need to consider this factor when they set deadlines and assign responsibilities. It is important to be considerate of PLWHA who have much to offer the process but may not be physically able to follow a tight schedule. Reaching consensus at the beginning on roles and expectations for all participants, can help avoid unrealistic expectations or misunderstandings later on.

PLWHA, especially those who have been recently diagnosed, may be coping with the tremendous stress of facing HIV/AIDS on a daily basis. Although it may not always be easy for the planning body to address this question (tacitly or explicitly), other participants need to recognize that for PLWHA members, planning for HIV-related services is "very close to home." The mechanisms that some PLWHA in the planning body may use to cope with periods of work stress, time constraints, or contentious decision making may not always seem appropriate to others.

The planning council should provide ample opportunities for PLWHA to contribute to the planning process within the physical and psychological constraints the disease imposes on them.

Group Dynamics

Throughout the process, planning councils may have to work with differences of opinion between different groups of participants such as providers, HIV-positive members, and individual health care professionals. People who are HIV-positive may emphasize the many immediate needs of PLWHA as they face the disease. Providers may be concerned with establishing a set range of services. Other participants may stress the need to create a methodically planned, well orchestrated service system that is sustainable in the long run and actively involves non-Ryan White providers and non-HIV-specific services.

All of these perspectives can contribute to developing a realistic and effective comprehensive plan to guide the planning council. The planning body needs to have the capacity to integrate them into the final product.

Confidentiality

Preserving participants' confidentiality may be a major challenge to widening community participation in comprehensive planning, especially in rural areas where PLWHA are often very reluctant to self-identify. Planning bodies have identified ways to protect confidentiality by enabling PLWHA and their families to provide input without disclosing their names. For example, planning councils can publicize their interest in receiving input from PLWHA by providing a telephone number that individuals can use to contact entities involved in the planning process without identifying themselves. Similarly, an intermediary group or individual known in the PLWHA community can identify PLWHA and arrange for them to call in for key informant interviews, again without giving their names. A PLWHA task force that meets through teleconferencing can also provide input to planning council before it finalizes a plan. Community meetings can be open to anyone interested in HIV/AIDS, not targeted specifically to PLWHA, so attendance does not constitute a public disclosure of HIV status.

Coordination with State Plans

Local and statewide planning needs to be conducted collaboratively. The planning council must participate in the development of the SCSN. The more diverse the representation in the statewide and local planning processes, the better the plan will be and the greater the community "buy in" for implementation. Creative approaches are needed to get more people involved in statewide as well as local planning.

Maximizing Planning Resources

Planning councils must find ways to maximize resources for comprehensive planning. The possibility of sharing some costs with other planning councils, other Ryan White Parts, and other HIV-related efforts in the region or State should be explored. For instance, in some cases, the State develops an epidemiologic profile that the planning council can use for planning. In other cases, planning councils may be able to share the cost and effort of developing an epidemiologic profile with the HIV Prevention Community Planning Group. The profile can be used by the local planning council and the State Part B program and may be useful to other Ryan White grantees as well.

Planning councils need not "start from scratch" when designing a comprehensive planning process. Much information is available about other EMA/TGA methods and their successes and shortcomings. Reports and survey instruments from other planning councils and requests for technical assistance may be made to HRSA/HAB. Planning bodies do not learn how to plan in a few weeks. The best ways to learn are by developing a plan and by learning from others with more experience.

EMAs/TGAs can support comprehensive planning by developing suggested comprehensive planning processes and formats, providing training sessions on comprehensive planning, bringing planning councils and Part B consortia together to jointly address comprehensive planning responsibilities and needs, and encouraging coordinated efforts involving multiple planning bodies.

Grantees can assist planning councils in obtaining epidemiologic data and support coordinated needs assessment and comprehensive planning activities that ensure the availability of the information needed to conduct effective planning. Often, much of the epidemiologic and needs assessment data needed for the comprehensive plan have already been developed and used for priority setting and resource allocations, and for the Part A application to HRSA/HAB. To fill information gaps, the grantee may also be able to provide the services of a planner or person skilled in data analysis who can help planning council members to make sound planning decisions. Such individuals may be available within State or local agencies or at universities.

The comprehensive plan should guide the planning council in the development of a coordinated system of care for PLWHA. It should include clear goals, objectives and strategies for action as well as mechanisms for assessing progress. This section presents suggestions for planning councils to organize their planning information in a logical format to best help decision making about HIV service priorities and funding allocations.

The content of a comprehensive plan document should be organized to provide clear answers to these basic questions: Where are we now?, Where do we need to go?, How will we get there?, and How will we monitor our progress?

Where Are We Now? (What is our current system of care?)

This section of a comprehensive plan should describe the status of HIV services within the geographic area of the planning council and describe the needs of PLWHA. It should include the following:

• An epidemiologic profile of the community, including the current epidemic and emerging populations

• A description of the current EMA/TGA response to the epidemic

• The assessed health care needs of the affected population, both in and out of care, in terms of: an estimate of unmet need, gaps in care, and prevention needs.

• A description of the current continuum of care

• An inventory of community resources available to PLWHA in the service area (by core and support service categories)

• An assessment of provider capacity and capability, and

• An assessment of service gaps and barriers to care. *

Where Do We Need To Go? (What is our vision of an ideal system?)

This section of a plan should describe a continuum of care for high-quality core services, and should include:

• A shared vision of how the planning council would like its system of care to function. This description may be an operational definition of "continuum of care," reflecting the context within which the planning council works (i.e., its specific circumstances and needs). This approach incorporates the "continuum of care" concept into the development of the plan at an early stage. It also provides an opportunity for addressing the SCSN, and the coordination of Part A services with other services available to PLWHA, especially services provided through other funding streams. Addressing the SCSN and coordination of services are legislative requirements.

• Shared values or guiding principles that shape the HIV-related system of care in the region. Values may include cost-effectiveness, high-quality services, the role of the grantee or planning council as the payer of last resort, etc.

How Will We Get There? (How does our system need to change to assure availability of and accessibility to core services? What steps can we take to develop this ideal system?)

This section of the plan should oultine goals for developing a comprehensive continuum of care and an action plan to help reach those goals. It may include the following information:

• Goals and objectives. These include long-term systems, planning, evaluation, and service-related goals and objectives and outcomes that need to be considered and reviewed every three years. The objectives need to be stated in very specific and measurable terms.

• Action plan. These are specific steps—strategies and activities—to undertake in implementing the plan.

When identifying service goals, aim to strike a balance between identifying the community's service needs and acknowledging the limited resources likely to be available to meet those needs. Choices may need to be made among competing needs when setting service goals and outlining strategies. This difficult process requires negotiating differences of opinion regarding the continuum of care and the most critical core services. Clear process guidelines for planning, particularly regarding decision making, are necessary to sustain an efficient process as the plan is finalized. Comprehensive planning is not the same as priority setting. The plan should pursue a realistic vision for developing the HIV/AIDS care system.

How Will We Monitor Our Progress? (How will we evaluate our progress in meeting our short- and long-term goals?)

This section should outline a plan to assess progress in achieving goals and objectives and to update the comprehensive plan. The monitoring and evaluation plan should describe a process for tracking changes in a variety of areas with a focus on improved use of client-level data, use of data in evaluation, and measurement of clinical outcomes.

The comprehensive plan should include specific guidelines for evaluating the decision-making process, the comprehensive plan itself, and the quality, costs, and effectiveness of services being considered.

* For more information on developing this part of a comprehensive plan, refer to the Needs Assessment chapter and the HRSA/HAB Needs Assessment Guide. [ Return to Text ]