Consumer Digest: Making A Difference Participation of Persons Living with HIV (PLWH) on CARE Act Title I and Title II Planning Bodies

The grantee, consortium, or statewide advisory bodies play a variety of roles. They give PLWH a voice in the debate on service decisions and policies that affect them. Often, the consumer groups receive leadership development training. This can "level the playing field" by providing consumers with the skills needed to discuss complex planning issues with providers of HIV services. Models in Massachusetts and New York and in the EMAs of Chicago, Illinois and Boston, Massachusetts are described below:

Massachusetts Consumer Advisory Board (CAB) System
Massachusetts Department of Public Health, HIV/AIDS Bureau
250 Washington Street, Third Floor
Boston, Massachusetts 02108-4619
(617) 624-5389

The Massachusetts Department of Public Health (MDPH) implemented a Consumer Advisory Board (CAB) System in 1991. Its mission is to organize HIV-infected people from each region of the State in order to involve individuals in various HIV/AIDS health care programs at the State, regional and community level. The CAB system provides a mechanism for meaningful PLWH input into the development of policies and programs that address their needs. The CAB system has three tiers:

• A Statewide Consumer Advisory Board (SWCAB) with representatives from the six regions of Massachusetts and representatives from special populations, such as individuals with hemophilia and children.
  
• Nineteen (19) regional consortium-level consumer boards.
  
• Sixty (60) or more agency-level consumer boards.

The various levels are managed by a State Health Department HIV/AIDS Bureau staff coordinator and are organized under the State HIV/AIDS Bureau Director.

The CORE Center
2020 West Harrison Street
Chicago, Illinois 60612
(312) 572-4500

The CORE Center for the Prevention, Care and Research of Infectious Diseases is a freestanding specialized outpatient health care facility affiliated with-and located on the campus of-the Cook County Hospital on the near west side of Chicago. It combines the resources of government and nonprofit agencies to address HIV/AIDS, tuberculosis, and other related infectious diseases that affect men, women, and children throughout the Chicago metropolitan area. The CORE Center opened its doors in October 1998 and offers a wide range of services including comprehensive outpatient care for HIV/AIDS patients in a single location. It is the largest provider of outpatient HIV care in the Midwest and receives funding through Titles I, II, III, and IV of the CARE Act.

Consumers play an ongoing role in Center operations, from planning, program design and decision making to service delivery. The CORE Center's consumer initiatives and projects are designed to ensure a variety of consumer involvement opportunities. They include the Peer Education, Volunteer, and Patient Advocacy Programs and the Community Action Committee

The Peer Education Program provides a six-week, 15-hour training curriculum to prepare interested consumers to serve as peer educators who feel comfortable talking to high-risk groups about HIV. Training includes: "HIV/AIDS 101"; information about all aspects of care and risk reduction; and skill development in how to talk to people about HIV and give effective presentations. The CORE Center has three cycles of peer education training per year, with 6-8 consumer participants per cycle. Consumers must apply for the program. Upon completion of training there is a formal graduation ceremony. Graduates join a pool of individuals who carry out varied assignments such as speaking in the community, making presentations inside the CORE Center, helping with clinics, and accompanying counseling and testing counselors to talk to patients and encourage them to get tested.

To support consumer participation, the CORE Center provides bus tokens and refreshments during training (using Title III and Title IV funds) and gives honoraria (supported partly through Title IV funds) for peer educators when they carry out speaking engagements and educational efforts.

The Volunteer Program is supported through Title III and other funding sources and includes many PLWH volunteers. All volunteers participate in a training that focuses on how to assist the CORE Center with its ongoing operations and serve as Client Advocates, rather than on health education. Volunteers visit patients on the special HIV ward, lead tours, serve as hosts at special events, and serve on special committees, such as planning, operations, special programmatic committees, and the Patient Education Committee. Client advocates accompany patients as they go to multiple clinics to receive care. Some volunteers with HIV also receive training as peer educators.

The Patient Advocacy Program employs two full-time patient advocates to obtain consumer input and support patient outreach and education. Paid through Title III, Title IV, and other resources, they serve on committees related to the CORE Center daily operations and planning, help administer a periodic Client Satisfaction Survey, deal with patient complaints and serve as community advocates. In 2002, they were working on a new patient orientation system. The patient advocates also are involved with Chicago's Title I planning council.

The Community Action Committee (CAC) is the CORE Center's consumer and community involvement body. Its mission is to "ensure that the CORE Center's services and programming are consistent with the evolution of the disease and the changing community needs by providing the community with a voice in the operational and planning process." The CAC is a group of committed consumers, activists and community-based organization representatives, at least 50 percent of whom are PLWH. Members are affiliated with more than 70 Chicago and suburban organizations representing 14 different populations affected by HIV.

Boston AIDS Consortium
140 Clarendon Street
Boston, MA 02116
(617) 867-0144

The Boston AIDS Consortium (BAC) provides professional support for the Boston planning council. The BAC is currently administering a pilot program for the planning council that provides laptop computers, printers, and computer supplies to PLWH planning council members who do not otherwise have access to the computer or the Internet. The program also pays monthly service fees for access to the internet and to maintain electronic mail accounts. The pilot program, in its second year, is an outgrowth of a successful former program that provided consumer members with fax machines.

The purpose of the program is to ensure that all planning council members have access to a computer in order to facilitate communication and to ensure that all members are able to use the Internet to access information that is relevant to the council's planning activities. The BAC has purchased 15 computers that are lent out to members for the duration of their term of service. The BAC administers a formal application process and the leadership of the council is involved in prioritizing access to computers among PLWH members. Individuals who are employed and have access to a computer through their job, for example, would be given a lower priority than someone who has no available means to access the Internet.

Additionally, the BAC provides an orientation training that covers basics about how to use a computer, as well as quarterly trainings. In response to participant feedback, subsequent trainings have focused on specific issues, such as how to find information on the Internet or how to use Microsoft Word. The BAC staff believe that the program has been successful by at least three measures. First, communication with and among planning council members is easier and faster. Second, participation in council and committee work has been enhanced owing to increased and more efficient access to information and resources. Finally, the level of computer literacy and proficiency among PLWH council members has increased significantly, with many participants completely integrating computer and Internet usage into their lives.

Entities Established by the Planning Council, Consortium or Other Planning Body

The second type of PLWH involvement model involves caucuses and committees established by the planning body. A caucus or committee is a subgroup of the broader planning body membership that shares common characteristics-in this case, persons living with or affected by HIV disease. Caucuses and committees provide forums for PLWH to discuss items that have been or will be discussed by the planning body. They educate PLWH on how to provide effective input to the planning body and empower PLWH by increasing PLWH participation in the decision making process. Some of these entities were established by planning bodies and expanded to include PLWH concerns beyond those discussed at planning body meetings. Four such entities, in New Orleans, Louisiana; Santa Clara, California; Philadelphia, Pennsylvania; and San Diego, California are profiled below:

New Orleans Community Coalition
Chair, Affected Community Committee
c/o Planning Council Support Staff
2601 Tulane Avenue, Suite 400
New Orleans, Louisiana 70119
(504) 821-7334

The Affected Community Committee is one of six standing committees created by the New Orleans Regional AIDS Planning Council (NORAPC), which serves as the planning body for both Title I and Title II and the Consumer Advisory Board for Title II. The Committee was established by the planning council specifically to ensure PLWH involvement in CARE Act activities. The Committee facilitates direct PLWH input to both planning bodies and has increased planning council/regional council recognition of PLWH concerns so that they are accorded equal weight with those of providers. The Committee also:

• Addresses community outreach issues.
  
• Assesses client satisfaction with Title I priority services.
  
• Provides consumer input on HIV Standards of Care.
  
• Appoints representatives to the Service Delivery, Administrative Assessment, and Nominating/By-Laws Committees to ensure that HIV-related needs and concerns are considered by these committees.
  
• Updates client satisfaction surveys.
  
• Participates in projects such as assessing the PLWH role in planning, access to services, and the effectiveness of requests for proposals.
  
• Coordinates three training sessions a year on medical treatment which are conducted by medical personnel at NORAPC meetings.

The Committee meets monthly, discussing items that will be addressed by both the Title I and Title II planning bodies. It regularly holds "information parties" to inform consumers about available services and opportunities to participate in the planning council. There is ongoing outreach to make PLWH aware of services available to them. The Committee attends health fairs and distributes brochures describing the role of the planning council and how PLWH can participate. Membership is open to all, and both PLWH and non-PLWH are encouraged to join. Voting privileges are open to anyone who attends three consecutive meetings. The Committee has five members appointed by NORAPC and there are currently two additional members from the community. It has a high attendance rate of racially/ethnically diverse PLWH who represent a geographically varied population covering eight parishes. The Committee's demographics also are diverse in terms of transmission mode, gender, and age.

Incentives to attend Committee meetings include childcare for up to five hours per activity, reimbursement for travel, and/or a Personal Care Attendant for up to five hours. Other expenses are reimbursed at the Committee's discretion. Refreshments are served at all meetings in order to accommodate consumers who have dietary needs or restrictions (i.e., the need to take medications with food) or who have to travel long distances during meal times. The Committee faces several challenges. It sometimes has difficulty completing tasks when its PLWH members are tired or ill. Another drawback is that while it can report problems to the planning council, it is not allowed to advocate formally with service providers.

Faces with a Voice Caucus, Santa Clara County Title I Planning Council
Chair, Faces with a Voice
c/o Planning Council Support
1275 South Winchester Boulevard, Suite A
San Jose, California 95014
408-257-4234

The PLWH Caucus of Santa Clara was established by the planning council and serves as its PLWH advisory group. The planning council also established a "sister" women's advisory group to concentrate on women's special issues. The caucus has formal roles and responsibilities and reports to the planning council's executive committee, where it has two seats. The caucus also provides direct input to the California State Office of AIDS.

The PLWH Caucus structures its work and agenda to collaborate with planning council activities and receives assistance and support from planning council staff. The caucus also acts as a forum for PLWH to discuss pertinent issues such as problems with providers. It follows up on PLWH complaints by distributing copies of the provider grievance procedures to PLWH communities.

The PLWH Caucus is composed solely of PLWH. The meetings are held "regularly on an ad hoc basis" with public notification, in accordance with the planning council by-laws. They are managed by three moderators who are all people of color. Membership is very diverse in terms of ethnicity, geography, and gender. To ensure diverse participation, the caucus often shifts its meeting place, using sites such as the African American Community Center and the town hall.

The caucus follows more flexible guidelines than other standing committees. For example, the PLWH Caucus can omit information shared at the meeting from its minutes if necessary to preserve confidentiality. Challenges identified by Caucus members include difficulties attracting new members. Another challenge is that not all issues discussed at PLWH Caucus meetings are pertinent to the planning council agenda. Meetings are used to share information among PLWH, since the caucus serves as the main connection with consumers. The Chair must balance the needs of members to share these concerns with the need to discuss planning council agenda items.

Consumer Caucus of the Philadelphia EMA HIV Commission
Chair, Positive Committee
Philadelphia EMA Planning Council
c/o Office of HIV Planning
1520 Locust Street
Philadelphia, PA 19102
(215) 546-2013

The Consumer Caucus serves as an advisory body to the Philadelphia Eligible Metropolitan Area (EMA) HIV Commission-the planning council. The Consumer Caucus was established to provide direct PLWH input into the planning council's decision making process. The Caucus consolidates and presents the views of five different consumer caucuses that report to it: the African American, Asian/Pacific Islander, Latino, Transgender, and Women's Caucuses.

The goals of the Caucus are to:

• Provide a forum to educate, understand, develop strategies, and advocate about issues associated with living with HIV disease.
  
• Coordinate with the New Jersey and Pennsylvania Suburban Caucuses for quarterly meetings and/or events.
  
• Ensure PLWH participation at out-of- town conferences and arrange for information from these meetings to go back to the population-specific caucuses..
  
• Conduct various needs assessments that cut across care and prevention planning processes.

The Consumer Caucus meets as often as needed, with notice set forth in accordance with the by-laws of the Philadelphia EMA HIV Commission. Meetings are usually scheduled a few days before every regular or special meeting of the planning council. Consumer Caucus meetings are open to the public "except when closed by a majority vote of the consumers present when discussing the personal impact of HIV disease." Some matters, such as problems with providers, are addressed within the caucus and not presented to the planning council.

Caucus membership is diverse in terms of ethnicity and HIV subgroup and is geographically representative of the epidemic. There are no membership or attendance requirements. Meetings are usually attended by consumers, guardians of PLWH, and invited guests. The Consumer Caucus currently has one staff member who serves as a resource person, prepares minutes for the planning council, finds speakers for conferences, conducts research to educate consumers about different treatment options, provides medical updates, and offers information on provider grievance procedures. Challenges identified include difficulties accomplishing goals without formal membership requirements. The level of investment fluctuates based on the individuals present at specific meetings.

San Diego HIV Consumer Council
c/o Office of AIDS Coordination
Health and Human Services Agency
P.O. Box 85524 MS P501-C
San Diego, CA. 92186
(619) 296-3400, ext. 104
(888) 304-4422, ext 104

The San Diego HIV Consumer Council's mission is to support and improve the quality of care and treatment services affecting the lives of PLWH in San Diego County through advocacy, outreach, support and education. As an organization involving over sixty PLWH from diverse backgrounds, the HIV Consumer Council encourages other individuals to participate in the planning, resource allocation and monitoring of HIV services. The council, operating under a set of formal by-laws, meets monthly as a whole and in five regional groups throughout the county. Monthly meetings have simultaneous interpretation into Spanish and for the hearing impaired. Subcommittees on Outreach and Quality Assurance meet regularly as well. The council is deeply involved in the annual "Needs Assessment Survey" and develops its own version of how the EMA HIV services budget should look and passes it forward to the planning council.

Membership is extended to all PLWH and to the parents or legal guardians of minors infected with HIV. The HIV Consumer Council acts as an advisory board to the San Diego County HIV Title I/II Planning Council on needs assessment, service planning and budget allocations both regional and countywide. The council also produces a Ryan White CARE Act 101: Consumer's Guide to the Local HIV Services Planning in Spanish and English to educate consumers on the planning process. It has ongoing trainings to update consumer knowledge and skills and providers often participate as presenters. Training topics include: Why Consumer Involvement?; The Local Planning Infrastructure; Determining Service Needs; Creating an Annual Service Plan; Implementing the Service Plan; and Evaluating the Service Plan. The council also produces a monthly newsletter which is available on its web site.

The Quality Assurance (QA) Committee has a formal agreement with the San Diego County Office of AIDS Coordination (OAC) to provide consultation on issues regarding contract monitoring and Quality Assurance. This allows the QA committee to intercede on a consumer's behalf when there is a problem with services funded by Titles I or II. Completing a "Service Evaluation" form initiates a process by which a member of the QA Committee responds to a consumer complaint or problem within three business days. Members of the QA committee are routinely invited along on provider site visits with County contract monitors.

HIV Community Coalition (HCC) of Metropolitan Washington D.C.
813 L. Street SE
Washington, D.C. 20003
(800) 558-AIDS

The HIV Community Coalition (HCC) of Metropolitan Washington D.C. is an independently formed, nonprofit PLWH organization with close connections to the Washington, D.C. Title I and II planning bodies. HCC was first established to incorporate the voices of disenfranchised PLWH and bring their collective voice to the table. It was the first organization in the Washington metropolitan area to advocate on behalf of special populations, including ex-offenders and transgender persons.

HCC has an informal relationship with both Title I and II planning bodies. Many current members of the People with AIDS Committee of the planning council are current or past members of HCC, as are many PLWH members of the Title II Consortium (called the D.C. CARE Consortium). While PLWH planning body members do not represent HCC formally, they often speak on behalf of special populations, since they are informed and reflective of the many support groups, committees, and caucuses that constitute HCC. Both planning bodies frequently consult HCC for broader consumer input. Seventy-five percent of HCC's board must be self-disclosed PLWH. Ninety-five percent of its staff are HIV-positive; members often begin as volunteers and then become staff. HCC seeks to represent, unify, and advocate on behalf of its members. The organization's mission is to present a collective voice on HIV-related policy making, programs, and services, while reflecting the diversity of the community it represents. Membership is very large and diverse; over 20,000 PLWH subscribe to the HCC newspaper HIV!Alive. Many PLWH participate in the different HCC events, support groups, committees, and advocacy meetings and benefit from services.

BABES Network of Washington State
1001 Broadway, Suite 100
Seattle, Washington 98122
(206) 720-5566

The BABES Network of Washington State is a peer support network established, controlled, and staffed almost entirely by HIV-positive women. Headquartered in Seattle, it provides direct service and direct action to assist women with HIV, including efforts to ensure consumer involvement in CARE Act programs. The Network is involved in both Title I and Title IV programs.

Established in 1989, the BABES Network operated as an informal peer support group for three years. It then went under the fiscal umbrella of the Seattle/King County Department of Public Health and also received its first Title I funding from the newly established Seattle EMA.
From 1994-97, the People of Color Against AIDS Network (POCAAN) served as its fiscal agent and in 1997, it became an independent nonprofit, tax-exempt organization.

Today BABES carries out a variety of training, client advocacy, and peer support services for women with HIV. It trains PLWH to prepare them for participation on CARE Act planning and consumer advisory bodies, self-advocacy and broader advocacy on behalf of HIV-positive women. Support groups, retreats, and other activities provide an opportunity for positive women to "hang out" together. Initially, differences in economic status, social class, and life experiences created barriers among the women, but over time they came to learn and gain emotional support from each other.

BABES receives funds to support its client and community advocacy and receives CARE Act funds for peer support and consumer involvement. The Title I EMA provides funding for counseling and emotional support services and Title IV supports a Consumer/Family Advocate who serves as a liaison among agencies and provides a consumer perspective for the Title IV program. The Consumer/Family Advocate participates in case conferences and accompanies case managers on home visits, helping to clarify and address client concerns from a peer perspective. The BABES Network is represented on the Northwest Family Center Steering Committee and helps that program get consumer input around child care issues.

Client participation is more clearly defined for Title I than for other CARE Act Titles. BABES supports increased cooperation across Titles with regard to consumer involvement to help ensure consistent consumer input. Among the challenges faced by its staff and Board are the competing demands of different programs for participation of women with HIV in planning and advisory groups.

III. What Should PLWH Know About Programs in the United States that Provide Health Care?

Your experience provides you with critical perspectives and information to share with the planning body. You will be an even more effective representative of PLWH if you understand major features of the health care system in the United States. You will be better able to discuss the unmet needs of individuals and populations if you understand the current health care system of services. For example, compare the following two statements:

A. From my own experience I have seen that many African-American women with HIV in my city are not able to get appropriate HIV care.

B. From my own experience I have seen that many African-American women with HIV in my city are not able to get appropriate HIV care unless they have children. If they do not have children, they do not qualify for Medicaid until they have advanced HIV disease. Ryan White-funded clinics could serve these women, but those programs are not located in neighborhoods near where most women with HIV live.

Both of these statements could be helpful to a planning body. The second statement, however, is much more useful because it shows an understanding of health care programs that currently exist and makes it easier to come up with a solution to this problem.

How you communicate your message at the planning body meetings may influence your impact on the planning body. For example, if you made the first statement at a meeting, even people who agree with you may not know what to do to resolve the problem. By contrast, the second statement leads to two possible solutions-work to make sure that women without children can get Medicaid, or work to establish a priority to fund services for women in neighborhoods where they currently are not available.

The system for providing and paying for health care in the United States is very complicated. There are several major programs that provide health insurance to PLWH and they vary widely. It is important for CARE Act planners to have a basic understanding of other funders of HIV services. Planning bodies must consider other sources of funding as they determine priority and allocation levels. The information that follows will help you better understand different types of health insurance and put CARE Act funding into the context of other funding sources.

Private vs. Public Health Insurance Programs

There are many ways that people in the United States have their health care benefits, or services, paid for. Most people have health benefits paid for through private or public insurance.

Insurance refers to public or private health care where a purchaser (such as an employer, a government, or an individual) buys coverage for future health care needs from an insurance company. By charging monthly fees called premiums, the insurer agrees to provide a specific set of covered services whenever a health care provider decides that the individual needs them. The premium is set in advance. As an example, a premium may cost an individual $300 per month. Whether the individual needs no services, $250 of services, or $5,000 of services in a month, the insurance company has to provide them. (Sometimes there is a maximum amount, or "cap," that the insurance company will pay. This has to be established in advance as part of the insurance policy, or rules.)

Public health insurance programs are programs that are operated by the government.
Private health insurance programs are programs offered in the private sector. Of all PLWH in the United States who are receiving regular health care, 32 percent have private insurance coverage.

Group insurance coverage. Group coverage is the most common type of private health insurance. Most people with private health coverage receive health insurance from their employer, or they belong to a specific type of "group" that helps them purchase insurance-such as a labor union. Generally, buying group health insurance that covers a large number of people reduces the cost for each person covered.

Individual insurance coverage. Under individual insurance coverage, an individual contracts with a health insurance company to provide them health insurance. Independent and self-employed persons or individuals whose jobs do not offer health insurance coverage must purchase insurance directly from insurance companies or brokers. While the health insurance laws are different from one State to the next, in most States individual health insurance coverage can be very expensive-and it can provide more restrictions on the amount and the type of services it will cover.

Many individuals who are self-employed or whose employers do not offer health insurance must purchase individual insurance if they wish to have coverage. Many healthy people who do not have group insurance coverage believe it is too much hassle or too expensive to buy their own individual insurance. People who do purchase individual coverage may do so because they need many health care services or because they have children with health care needs. For this reason individual health insurance tends to cover sicker people (or people with greater needs) and cost more than group insurance.

Federal and State laws govern how private health insurers operate. Generally, health insurers are required to treat all members of a group the same way. People who have a health condition that requires them to use a lot of services (sometimes called a pre-existing condition) usually have more protections under group insurance coverage than they would under individual insurance coverage. Health insurers cannot charge them more, provide fewer benefits, or treat them differently because they need a lot of health care.

To learn more about private health insurance in your particular State, visit the Web site www.healthinsuranceinfo.net. The Consumer Guides for Getting and Keeping Health Insurance inform people of their rights under group coverage or individual coverage and explain what programs are available in a particular State.

Public Health Insurance as a Safety Net

Public health insurance programs can be operated by the Federal government, State governments, local governments, or tribal (Native American) governments. In most cases, public programs exist for people who are unable to obtain private coverage. Public programs can also help people who are underinsured -- which means they have some health insurance coverage, but it is limited and does not cover all of the services they need. For example, many people have private health insurance that does not cover prescription drugs. A person living with HIV disease covered under such a policy would be considered underinsured because prescription medications are essential to their survival.

Many Federal programs that serve people who are uninsured or underinsured are not insurance programs. The CARE Act and community health centers programs are examples of public health care programs that do not provide insurance. Instead, the government gives grants to purchase as many services as can be provided with a specific amount of money. If the money runs out, no more services are provided.

Therefore it is important that as many people as possible have insurance coverage. This allows the fixed amount of CARE Act money to be used to pay for only those services not covered by insurance programs. For this reason, the CARE Act is considered and referred to as a payer of last resort. Below are brief descriptions of the three major public health insurance programs in the United States:

Medicaid. Medicaid is the country's primary health care safety net, meaning that it is the major U.S. health insurance program serving our nation's poor and disabled people. Medicaid is operated jointly by the Federal and State governments. As long as States meet Federal rules about specific groups of people that must be covered and benefits that must be provided, States can choose to cover additional groups of people and provide additional services. In exchange for meeting Federal rules, the Federal government pays each State a percentage of its Medicaid spending. At a minimum, the Federal government pays for half of all Medicaid spending in a State. In some States, the Federal government pays up to 80 percent of total Medicaid spending.

Medicaid is the single largest source of insurance coverage for PLWH in the United States. About 29 percent of all PLWH in regular care receive health coverage from Medicaid. Medicaid provides health insurance coverage to low-income people that fall into specific categories. The main categories are: low-income children and the mothers of these children; low-income people with disabilities; low-income seniors. While women with children can qualify for Medicaid simply because they have low incomes, childless adults with HIV generally gain access to Medicaid by being classified as disabled. The following program characteristics apply to disabled persons:

• Social Security Administration (SSA) determines whether an individual is disabled, which requires them to be so disabled that they are unable to work.
  
• Individuals who become disabled and have a low income can receive income assistance through the Supplemental Security Income (SSI) program.
  
• People who receive SSI are generally eligible for Medicaid, except in a few States that require people to have a lower income to qualify for Medicaid than that required by SSI.
  
• For PLWH to qualify for SSI and Medicaid, they generally must be so severely disabled that they have had an AIDS diagnosis.

Most State Medicaid programs cover a broad range of benefits, including prescription drugs, mental health, and certain home and community-based services. However, eligibility rules and covered benefits vary considerably from one State to another. States can request waivers to design programs that do not meet all legislative requirements. States can seek "Medicaid waivers" from the Center for Medicare and Medicaid Services (CMS), formerly the Health Care Financing Administration (HCFA). These have been used by States to develop program innovations, such as Medicaid managed care initiatives.

• HRSA's Web site has several simple documents that explain how Medicaid works and identify opportunities to use Medicaid to expand access to health care. Planning bodies can use these materials to help them assess existing community capacity to provide health care services, when they conduct priority-setting activities. Two documents in particular, are especially helpful: Basic Description of the Medicaid Program, and Rural Health Services. To obtain these and other materials, visit the HRSA Web site or call the HRSA Information Center at 888-ASK-HRSA.

Medicare. Medicare is a Federal program that provides health insurance to retired workers (people over 65) and working people who become disabled and can no longer work.

• For persons living with HIV disease under age 65 to qualify for Medicare, they must meet the same Social Security disability standard as in the Medicaid program. They also must have contributed to Medicare for a long enough period of time to qualify for benefits.
• Working people contribute to Medicare through deductions that are taken out of their paycheck. In most cases, a person must contribute to Medicare for 10 years before becoming eligible for benefits.

Like Medicaid, Medicare is an insurance program that provides fairly comprehensive benefits. One important benefit that Medicare does not cover is prescription drugs. Congress is currently discussing whether Medicare can be expanded to cover prescription drugs. Many PLWH who receive Medicare have low incomes and also may get Medicaid. In these cases, Medicare is the first payer of benefits that are covered by Medicare. Medicaid is used to supplement Medicare by providing prescription drugs and other benefits not covered by Medicare. Individuals who have both Medicare and Medicaid are referred to as "dual eligibles."

Approximately 19 percent of all PLWH who are receiving regular health care qualify for and receive coverage under Medicare. To learn more about Medicaid or Medicare, visit the Center for Medicaid and Medicare Services (CMS) Web site.

S-CHIP. S-CHIP stands for the State Children's Health Insurance Program. S-CHIP gives money to States to provide health insurance to children who are not covered by other health insurance programs. Whereas Medicaid covers children with very low incomes, many other children in working families that do not have health insurance. They are not poor enough to qualify for Medicaid and their parents' jobs do not provide health insurance coverage. The Federal government pays each State a percentage of its S-CHIP spending. At a minimum, the Federal government pays for 65 percent of S-CHIP spending. States have the option of expanding Medicaid to cover S-CHIP-eligible individuals or establishing a separate program.

• Stand-alone programs do not need to meet all of Medicaid's requirements and consumer protections. Therefore, States can use a stand-alone program to offer fewer or less generous benefits.
  
• Roughly one-third of the States operate Medicaid S-CHIP programs, one-third operate stand-alone programs, and one-third use Medicaid for the lowest income S-CHIP populations and a stand-alone program for higher income population groups.
  
• Recently, some States have begun to use their S-CHIP programs to cover parents of children in the S-CHIP program.

S-CHIP programs are relatively new and there is no available data on the percentage of PLWH who receive health care through S-CHIP programs. To learn more about S-CHIP, visit HRSA's Maternal and Child Health Bureau's Web site.

Fee-for-service is a way that health insurance companies pay doctors, hospitals, and other health care providers. Insurers pay a specific amount or percentage of the bill for each specific service provided. Under this system, doctors and hospitals get reimbursed for all care provided with few cost-saving incentives built into the system-although the fee paid might be less than the cost of delivering the care. There are many names for managed care, such as: HMO = health maintenance organization; PPO = preferred provider organization; and MCO = managed care organization.

By contrast, managed care pays doctors or hospitals differently. Generally it pays a fixed amount of money every month for each patient-even if the doctor does not see that patient that month. Under this system, doctors who order a lot of services may reduce their profit. The premise of managed care is that doctors and providers will order necessary services, but will not order services that are not needed.

Many PLWH who receive their health care from managed care programs rate them highly and feel that they receive first rate care. There is a concern, however, that managed care does not always work as intended, especially for people with complicated health care needs and people who use a lot of health care services-such as PLWH. In addition, many PLWH may not understand the complex rules of managed care, such as requiring patients to select a primary care provider (PCP).

The number of HIV-infected individuals enrolled in Medicaid managed care has significantly increased as States have made changes to Medicaid and other health insurance programs in order to reduce costs and expand access to care. Initially, States that mandated managed care for Medicaid beneficiaries focused on women and children. More recently, States have extended managed care enrollment to people with serious disabilities or chronic illness. As States move these Medicaid populations into managed care, PLWH increasingly will be enrolled in managed care programs. Managed care has become widespread-and most people with public or private health insurance are in some type of managed care.

• Slightly more than half of all Medicaid beneficiaries are enrolled in managed care programs, including a growing number of persons living with HIV disease.
• Slightly more than a quarter of people with disabilities in Medicaid (including PLWH) are enrolled in managed care.

Managed care enrollment is increasing among other (non-Medicaid) public and private insurers. In some health care markets, PLWH have enrolled in significant numbers in Medicare's managed care program, Medicare+Choice. This program often provides access to pharmaceutical coverage and reduced cost sharing for outpatient care. In addition, PLWH receiving private health insurance coverage through their employers often are enrolled in some form of private sector managed care.

The rapid growth of managed care in Medicaid has significance for PLWH and CARE Act entities since Medicaid is the largest payer of care for PLWH nationally. Planning bodies must consider the impact of Medicaid managed care programs on the ability of people to access quality HIV care. Managed care systems must be designed to include qualified and experience HIV providers and benefits needed by PLWH. Planning body members should be aware of the extent to which PLWH in their community are enrolled in managed care. Benefits coverage and limits are important to understand when assessing the care system and needs of community members, including those in managed care.

• To learn more about managed care for PLWH, the National Association of People with AIDS (NAPWA) has produced guides that explain how Medicaid managed care works and a tool to help PLWH navigate through managed care programs. Contact NAPWA at (202) 898-0414 or visit the association's Web site to obtain: Your Passport to Managed Care: A Tool for Making Managed Care Work for You; Making Medicaid Managed Care Work: An Action Plan for People Living with HIV; and Building Strong Medicaid Managed Care Programs: A Guide to Help Consumer Advocates Participate in Strengthening HIV/AIDS Provisions in Managed Care Contracts.
• To learn more about general health care issues and HIV/AIDS policy issues, the Kaiser Family Foundation is a good resource. Two documents might be particularly useful: Financing HIV/AIDS Care: A Quilt With Many Holes, and Critical Policy Challenges in the Third Decade of the HIV/AIDS Epidemic. The Kaiser Family Foundation provides materials on Medicaid, including Medicaid at a Glance and Medicaid & HIV/AIDS Policy: A Basic Primer. All of the Foundation's materials are free-of-charge and can be found at it's Web site. For printed copies of reports, call the Kaiser Publication Request Line's toll-free number, 800-656-4533.