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CARE Act Title II Manual - 2003 Version

VIII. Program Guidance

3. Comprehensive Plan

Introduction

1. Legislative Background
2. HAB/DSS Expectations
3. Comprehensive Planning Process
4. Approaches
5. Content of a Comprehensive Plan
6. References

Chapter 3 
Comprehensive Plan 

Introduction TOP

Planning is central to the CARE Act’s focus on local and State decision making in developing HIV/AIDS care systems. Each grant year, planning bodies 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 system of care over time. It does so by reviewing needs assessment data, existing resources to meet those needs, and barriers to care. Additional useful information to review includes 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 body 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 bodies 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:

• What is our current system of care? (Where are we now?)
• What system of care do we want? (Where do we need to go?)
• What steps can we take to develop this ideal system? In particular, what strategies are needed to assure access to the system in order to eliminate disparities? (How will we get there?)
• How will we monitor our progress?

Legislative Background  TOP

States

The CARE Act requires States to develop a comprehensive plan for the organization and delivery of HIV care and support services to be funded under Title II. States are permitted to use up to 10 percent of the grant award for planning and evaluation.

Section 2617(b)(4) requires the State’s application for CARE Act funding to contain “a comprehensive plan that describes the organization and delivery of HIV health care and support services to be funded with assistance received under this part that shall include a description of the purposes for which the State intends to use such assistance, and that—

(A) establishes priorities for the allocation of funds within the State based on—

(i) size and demographics of the population of individuals with HIV disease (as determined under paragraph (2)) and the needs of such population (as determined under paragraph (3));

(ii) availability of other governmental and non-governmental resources, including the State medicaid plan under title XIX of the Social Security Act and the State Children’s Health Insurance Program under title XXI of such Act to cover health care costs of eligible individuals and families with HIV disease;

(iii) capacity development needs resulting from disparities in the availability of HIV-related services in historically underserved communities and rural communities; and

(iv) the efficiency of the administrative mechanism of the State for rapidly allocating funds to the areas of greatest need within the State;

(B) 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;

(C) 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);

(D) describes the services and activities to be provided and an explanation of the manner in which the elements of the program to be implemented by the State with such assistance will maximize the quality of health and support services available to individuals with HIV disease throughout the State;

(E) provides a description of the manner in which services funded with assistance provided under this part will be coordinated with other available related services for individuals with HIV disease; and

(F) provides a description of how the allocation and utilization of resources are consistent with the statewide coordinated statement of need (including traditionally underserved populations and subpopulations) developed in partnership with other grantees in the State that receive funding under this title.”

Section 2617(b)(6) requires the State’s application for CARE Act funding to contain
“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;”

The State is expected to provide the following planning-related information to HAB/DSS in describing its use of Title II funding:

• The purposes for which the State intends to use the funds, including the services and activities to be provided, and an explanation of how the State would maximize the quality of health and support services available to all PLWH
• How funded services will be coordinated with related services for individuals with HIV disease, and
• How the allocation and utilization of resources are consistent or not with the SCSN, developed in partnership with other grantees in the State receiving funding under this title.

The vast majority of States have established State-level planning or advisory councils to address the Title II comprehensive planning requirements.

Consortia

Under Title II, some States provide funds to HIV care consortia for assistance in planning, developing, and delivering comprehensive services for individuals and families affected by HIV disease. To be eligible for State assistance, the CARE Act requires consortia to conduct the following planning activities:

• Carry out an assessment of need within their geographic area, and
• Develop a plan, in consultation with PLWH and public health and community-based providers, to ensure the delivery of services to meet identified needs.

In developing the HIV services plan, consortia must ensure that their service areas correspond to the geographic boundaries of local health and delivery systems for support services to the extent possible. In the case of services to rural residents, consortia must deliver case management services that link available community support services to specialized medical services. Consortia must demonstrate that adequate planning has occurred to meet the special needs of families with HIV disease, including family- and youth-centered care. A consortium must budget for comprehensive planning activities unless the State funds them directly.

Consortium Planning Participants

In developing the comprehensive plan, consortia need to involve a broad range of stakeholders, including PLWH. The CARE Act requires the consortium to consult with the following entities:

• The public health agency that provides or supports ambulatory and outpatient HIV-related care in the consortium’s geographic area. If the public health agency does not provide such services directly, it should consult with the entity or entities that provide services directly.
• One or more community-based organizations (CBOs) organized solely for the purpose of providing HIV-related support services to PLWH.
• Public and nonprofit private organizations that are Title IV grantees. If there are no such organizations in the area, the consortium must consult with representatives of organizations with a history of serving (1) women, infants, children, and youth with HIV disease and (2) family members who care for these individuals.
• The types of entities required by the CARE to be represented on Title I planning councils, such as PLWH who are unaligned with providers, health and social service providers, other CARE Act grantees, and other health care programs (e.g., Medicaid).

The consortium is required to make PLWH involvement a priority. The consortium’s facilitation of direct input by those who are most affected by this epidemic is key to successful planning. One of the most important lessons learned from consortia that have completed a comprehensive planning process is that the support of infected and affected communities is vital to ensure a sound comprehensive plan and its effective implementation.

HAB/DSS Expectations TOP

Multi-Year Comprehensive Plans and Relationship to Implementation Plans. Each year, planning bodies establish priorities and allocate resources to meet goals and objectives. However, 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.

Beginning in FY 2003, States are required to submit an updated comprehensive plan based on an updated needs assessment.

Use of Title II Funds for Planning. States are allowed to fund planning activities, using grant funds in a variety of ways.

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

• Address disparities in HIV care, access, and services among affected subpopulations and historically underserved communities
• Establish and support an HIV care continuum
• Coordinate resources among other Federal and local programs, and
• 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.

Include strategies that:

A. 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
B. Eliminate barriers to care and disparities in services for historically underserved populations
C. Provide goals, objectives, and timelines (as determined by the needs assessment)
D. Coordinate services with HIV prevention programs including outreach and early intervention services, and
E. 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).

Comprehensive Planning Process TOP

While there is no single approach to planning, States 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 comprehensive planning process and plan do the following:

• Balance openness and inclusiveness with timely creation of a final product
• Are developed in a coordinated manner with other CARE Act plans
• Provide guidance to the planning body in making decisions and developing contingency plans
• Build upon and are coordinated with the needs assessment process
• Reflect coordination with the priority-setting process
• Balance service needs with the resources available to meet them, and
• Include evaluation guidelines to help the planning body self-assess the planning process.

Steps in the planning process are as follows:

• Plan to Plan
• Data Gathering and Analysis
• Plan Preparation, Approval, and Dissemination, and
• Implementation of the Plan

Each of these phases is described below.

Plan to Plan

During this phase, the planning committee 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 bodies 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 respond to the service needs of PLWH, these needs first must be identified. Typically, the planning body uses information from its epidemiologic profile and other needs assessment data as input 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 group—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 body members, or paid consultants who have expertise in this area. The planning body can hire outside consultants to carry out the data collection and analysis. If a consultant is hired, the planning body still retains responsibility for the planning process and needs to supervise the work of the consultant and ensure that the voices of PLWH are heard.

Because the 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 is reviewed and discussed in terms of validity, strengths and limitations, and usefulness in answering the questions about the HIV care delivery system. Data are analyzed and formatted, and results are presented to the planning committee and planning body 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, outline and prepare a plan document. The State or planning body receives a presentation of key information, usually in an open meeting to which the public is invited. The draft plan is reviewed by the planning committee or by the entire planning body and revisions are made as needed. The comprehensive plan must be approved by the State.

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

Implementation

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

The planning process should help guide the State and its planning bodies 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 body to examine ways to increase the efficiency of service delivery and to maximize the use of existing funding sources. The plan should guide response to changes in the epidemic and the availability of resources.

A comprehensive plan should cover a three- to five-year planning cycle from the start of the planning process through implementation. However, changes in the epidemic 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 the 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, think about needs and resources three to five years down the road. Epidemiologic projections should cover a three- to five-year time frame. For example, it will be important to be able to estimate the number of PLWH three or four or five years from now. These are the people for whom services need to be planned. The goal is to be able to estimate the demand for units of the various types of services offered. Planning is not simply the production of a document—it is a process to help make decisions about services.

Approaches TOP

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 PLWH and their family members are often very reluctant to identify themselves. Planning bodies cannot plan for PLWH unless they plan with them.

Planning bodies have identified ways to protect confidentiality by enabling PLWH and their families to provide input without giving their names. A telephone number can be publicized, so that PLWH can call for anonymous interviews. Similarly, a group or individual in the PLWH community can make arrangements for PLWH 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 body members may contribute to the planning process in different ways and with varying degrees of intensity. The diversity of the 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 bodies should consider the following factors before embarking on the planning process.

Degree of Diversity of the Planning Group

The more diverse the planning group in terms of varying socioeconomic backgrounds, age differences, race/ethnicity, and cultural differences, the more inclusive and representative your planning process. The group should not be limited to members of the planning body. 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 worked on HIV-related services for very long or who may be less familiar with committee meeting procedures and CARE Act legislation. PLWH who have known about their HIV status for several years or provider personnel, on the other hand, may be very familiar with infected communities, as well as policy and resource networks. If the planning body 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 PLWH 

PLWH members in advanced stages of HIV disease 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 PLWH 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, but especially for PLWH, can help avoid unrealistic expectations or misunderstandings later on.

PLWH, especially those who have been recently diagnosed, may be coping with the tremendous stress of facing HIV disease 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 PLWH members, planning for HIV-related services is “very close to home.” The mechanisms that some PLWH 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 body should provide ample opportunities for PLWH to contribute to the planning process within the physical and psychological constraints the disease imposes on them.

Group Dynamics

Throughout the process, planning bodies 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 PLWH 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.

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 PLWH are often very reluctant to self-identify. Planning bodies have identified ways to protect confidentiality by enabling PLWH and their families to provide input without disclosing their names. For example, planning bodies can publicize their interest in receiving input from PLWH 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 PLWH community can identify PLWH and arrange for them to call in for key informant interviews, again without giving their names. A PLWH task force that meets through teleconferencing can also provide input to planning council before it finalizes a plan. 

Coordination with State Plans

Local and statewide planning needs to be conducted collaboratively. The more diverse the representation in the statewide and local planning processes, the better the plan will be and the greater the community support for implementation. Creative approaches are needed to get more people involved in statewide as well as local planning.

Maximizing Planning Resources 

Planning bodies must find ways to maximize resources for comprehensive planning. The possibility of sharing some costs with other CARE Act Titles 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 body can use for planning. In other cases, planning bodies 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 body and the State Title II program and may be useful to Title III and Title IV grantees as well.

Planning bodies need not “start from scratch” when designing a comprehensive planning process. Much information is available about other methods and their successes and shortcomings. Reports and survey instruments from other planning bodies and requests for technical assistance are available from 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.

States can support comprehensive planning by developing suggested comprehensive planning processes and formats, providing training sessions on comprehensive planning, bringing planning bodies and Title II consortia together to jointly address comprehensive planning responsibilities and needs, and encouraging coordinated efforts involving multiple planning bodies.

States can also assist planning bodies 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. States may be able to provide the services of a planner or person skilled in data analysis who can help planning body members to make sound planning decisions. Such individuals may be available within State or local agencies or at universities.

Content of a Comprehensive Plan  TOP

The comprehensive plan should guide the planning body in the development of a coordinated system of care for PLWH. It should include clear goals, objectives and strategies for action as well as mechanisms for assessing progress. This section presents suggestions for planning bodies 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?

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

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 PLWH. It should include the following:

• An epidemiologic profile of the community
• The assessed needs of the affected population, both in and out of care
• An inventory of community resources, including availability of non-Title I funds (include an inventory of EIS and key points of entry, which is needed to identify the adequacy of services to link PLWH into care)
• An assessment of provider capacity and capability (e.g., do current providers have the expertise and infrastructure to meet current and projected service needs?), and
• An assessment of service gaps and barriers to care for special populations

What system of care do we want? (What steps can we take to get there? Where do we need to go, and how will we get there?)

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

• Vision. A shared vision of how the planning body would like its system of care to function. This description may be an operational definition of the “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 Title II services with other services available to PLWH, especially services provided through other funding streams. Addressing the SCSN and coordination of services are legislative requirements.
• Values. 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 body as the payer of last resort, etc.
• Goals and objectives. These include long-term goals and objectives regarding systems planning, evaluation, and service-related action steps for each objective. The objectives need to be stated in very specific and measurable terms.
• Action plan. These are more 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?

This section should outline a plan for monitoring and evaluation 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 including the epidemic itself and the community’s service needs, provider capacity and resources, as well as legislative, regulatory, and/or treatment guidelines. The monitoring and evaluation plan should also provide mechanisms to monitor grantee systems and to evaluate program effectiveness and quality of care.

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. The plan should also specify processes, activities, and responsibilities for monitoring contracts with service providers.

To develop a plan for monitoring and evaluation of their comprehensive planning process, planning bodies can use the Self-Assessment Module (SAM) on comprehensive planning, developed by HRSA/HAB, to review past planning activities and improve future planning. The SAM provides activities to guide planning members through the components of the comprehensive plan and assist them in developing a comprehensive planning process.

For further information on comprehensive planning, see the HAB website. The “Tools for Grantees” section includes materials on comprehensive planning. Many States also have websites that may include copies of the most current comprehensive plan for the area.

References  TOP

Health Resources and Services Administration, HIV/AIDS Bureau. Self-Assessment Module: Comprehensive Planning. Rockville, MD: U.S. Department of Health and Human Services, 2002.

HRSA, HAB. “Comprehensive HIV Services Planning,” CARE Act Technical Assistance Call Report. Rockville, MD: U.S. Department of Health and Human Services, 1996.