Ryan White HIV/AIDS Program Part A Manual

Since its inception, the Ryan White HIV/AIDS Program has mandated that planning involve a range of representative categories in order to ensure broad community input. Amendments to the legislation over time have expanded membership requirements for consumers, providers, care disciplines, and historically underserved populations. These changes are designed to reflect changes in the HIV/AIDS epidemic.

Each category of membership meets a specific need. Involvement of those who use Ryan White services ensures crucial input from persons closest to care delivery. Legislative provisions require that consumers be free of conflict of interest in relation to funding decisions. Other membership categories—comprising government and health professions—are intended to enhance service delivery. This includes coordination of funding streams to better address gaps in care, avoid overlaps in services, and create comprehensive service delivery systems that meet the multiple care needs of clients. All categories of membership are designed to bring together expertise in such areas as health planning, service delivery, client perspectives, and financing of care.

Of course, effective participation in planning council decision making requires more than simply filling designated membership slots. Fostering active and meaningful participation of members requires other mechanisms, including training for planning body members.

Section 2602(b)(1) of the Act requires a Part A planning council to "reflect in its composition the demographics of the population of individuals with HIV/AIDS in the eligible area involved, with particular consideration given to disproportionately affected and historically underserved groups and subpopulations."

Section 2602(b)(2)) lists specific membership categories that must be represented on the planning council. They include:

1. "health care providers, including federally qualified health centers;

2. community-based organizations serving affected populations and AIDS service organizations;

3. social service providers, including providers of housing and homeless services;

4. mental health and substance abuse providers [considered two separate categories];

5. local public health agencies;

6. hospital planning agencies or health care planning agencies;

7. affected communities, including people with HIV/AIDS, members of a Federally recognized Indian tribe as represented in the population, individuals co-infected with hepatitis B or C, and historically underserved groups and subpopulations;

8. non-elected community leaders;

9. State government (including the State Medicaid agency and the agency administering the program under [P]art B) [considered two separate categories];

10. grantees under subpart II of [P]art C;

11. "grantees under section 2671 [Part D], or, if none are operating in the area, representatives of organizations with a history of serving children, youth, women, and families living with HIV and operating in the area;

12. grantees of other Federal HIV programs, including but not limited to providers of HIV prevention services; and

13. representatives of individuals who formerly were Federal, State, or local prisoners, were released from the custody of the penal system during the preceding 3 years, and  had HIV/AIDS as of the date on which the individuals were so released."

Section 2602(b)(5)(C) states that no less than 33 percent of the members must be consumers who:

• "are receiving HIV-related services" from Part A-funded providers;

• "are not officers, employees, or consultants" to any providers receiving Part A funds, and "do not represent any such entity"; and

• "reflect the demographics of the population of individuals with HIV/AIDS" in the EMA/TGA.

This means that the demographics of the HIV/AIDS epidemic must be reflected for the whole planning council membership and the consumer membership. In addition, at least two of these consumer representatives must publicly disclose their HIV status.

The Ryan White HIV/AIDS Program has emphasized representation and reflectiveness from its inception and this has been enhanced with each reauthorization. For example, the Senate Report from the 1996 Amendments emphasized the importance of planning council membership and the responsibility of the Health Resources and Services Administration (HRSA) to provide clear guidance and monitor planning councils to ensure representation and reflectiveness. Similarly, HAB's Division of Service Systems (DSS) has consistently emphasized that planning councils can be truly effective in meeting their legislated responsibilities only if they have well-supported consumer participation and membership reflective of the local demographics of the HIV/AIDS epidemic.

Monitoring

HAB/DSS is responsible for providing guidance that establishes a standard for all EMAs/TGAs regarding planning council membership and helps them meet that standard. This includes regularly monitoring planning council membership to ensure that requirements are met in each of the following three areas:

• Representation

• Reflectiveness, and

• Consumer membership.

In turn, planning councils should monitor their membership requirements at the local level with tools used consistently across all EMAs/TGAs (see attachments to this chapter).

Implementation of Membership Requirements

Representation, reflectiveness, and consumer membership are essential to fulfilling legislative requirements on planning council membership. They are to be addressed as follows.

Representation is the extent to which the planning council includes individuals from the legislatively defined categories of membership. Requirements are as follows:

The planning council must include at least one member to separately represent each of the designated membership categories (unless no entity from that category exists in the EMA/TGA). (See exceptions to this rule, below.) Separate representation means that each planning council member can fill only one legislatively required membership category at any given time, even if qualified to fill more than one. As membership on the planning council changes, an individual member may be moved from one representation category to another to meet legislative requirements. The planning council may choose to include additional representatives within any category to achieve what it considers adequate community representation.

The category "grantees under other Federal HIV programs" is to include, at a minimum, a representative from each of the following:

• Federally-funded HIV prevention services

• Grantees providing services in the EMA/TGA who are funded under the Special Projects of National Significance (SPNS), AIDS Education and Training Centers (AETCs), and Ryan White Dental Programs

• The Housing Opportunities for Persons With AIDS (HOPWA) program of the U.S. Department of Housing and Urban Development (HUD), and
  
• Other Federal programs if they provide treatment for HIV/AIDS, such as the Veterans Administration.

There are three exceptions to the rule on separate representation:

• One person may represent both the substance abuse provider and the mental health provider categories if his/her agency provides both types of services and the person is familiar with both programs.

• A single planning council member may represent both the Ryan White Part B program and the State Medicaid agency if that person is in a position of responsibility for both programs.

• One person can represent any combination of Ryan White Part F grantees (SPNS, AETCs, and Dental Programs) and HOPWA, if the agency represented by the member receives grants from some combination of those four funding streams (e.g., a provider that receives both HOPWA and SPNS funding), and the individual is familiar with all these programs.

Local grantees of, or participants in, other Federal categorical HIV and STD programs should be considered for representation on the planning council, but they are not specifically required.

Reflectiveness is the extent to which the demographics of the planning council's membership look like the epidemic of HIV/AIDS in the EMA/TGA. Requirements are as follows:

• Reflectiveness should be based upon the combined total of HIV prevalence and AIDS pr and age at evalence in the EMA/TGA. This includes at least the following: race/ethnicity and gender.

• As stated above, reflectiveness means that the local HIV/AIDS epidemic must be reflected for the whole planning council membership and also for the consumer membership.

• PLWHA positions on the council should be selected without regard to the stage of disease of the individual.

Reflectiveness does not mean to identically mirror local HIV/AIDS demographics (i.e., it does not mean that if 1.5 percent of local AIDS cases are Asians and Pacific Islanders, then 1.5 percent of planning council members must be from that community).

Consumers are individuals "receiving HIV-related services" from Part A providers and include PLWHA receiving services themselves and the parents and caregivers of minor children who are receiving such services.

Consumers are further defined as unaligned. Unaligned refers to consumers who do not have a conflict of interest, meaning they have no financial or governing interest in Part A-funded agencies. Consumer representatives counted towards the 33 percent PLWHA/consumer representatives must be unaligned. Consumers who volunteer with a Part A-funded provider are not considered to "represent" that entity and are eligible for consumer membership on the planning council as unaligned members. The legislation permits a PLWHA to serve as a volunteer at a Part A-funded agency and still be considered unaligned. *

Tools for Measuring Representation and Reflectiveness

Attached are tools to help EMAs/TGAs meet legislative requirements for representation and reflectiveness.

Attachment 1: Planning Council Information Sheet gathers information from individual planning council members or nominees to help the planning council decide if its current membership meets representation and reflectiveness standards. A "record number" could be used instead of the name. (Forms completed by current members can be tallied on Attachments 2 and 3.) This form can also be used during membership recruitment to gather information about nominees, including membership categories, affiliations, demographics, and skills and interests. For recruitment, you can tailor the areas of interest and expertise listed to reflect the needs of your planning council.

Attachment 2: Planning Council Representation Membership by Category helps your planning council ensure that its membership includes all the legislatively required categories.

To complete Attachment 2, for each mandated category, enter the number of planning council members by race/ethnicity and gender. Each individual member should be included on this chart only once. In the second TOTAL row at the bottom of the table, enter the number of unaligned persons living with HIV/AIDS by race/ethnicity and gender. The totals at the bottom of Table 3 should add to the total number of planning council members.

Attachment 3: Determining Reflectiveness of Unaligned PLWHA on the Planning Council helps you determine the reflectiveness of your planning council overall and of the unaligned PLWHA membership. In column 1, enter the demographics of the HIV/AIDS epidemic in your EMA/TGA in terms of race/ethnicity, gender, and age at diagnosis. Then in Column 2, enter data on the composition of the unaligned PLWHA membership. This process will help you understand the extent to which current planning council membership and PLWHA membership are reflective of the epidemic of HIV/AIDS in your EMA/TGA.

* See the chapter on conflict of interest for more information about criteria for determining which members can be included in the 33 percent consumer membership category. [ Return to Text ]