Chapter 1
Overview of the Ryan White CARE Act  TOP

Introduction

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is Federal legislation that addresses the unmet health needs of persons living with HIV disease (PLWH) by funding primary health care and support services that enhance access to and retention in care. First enacted by Congress in 1990, it was amended and reauthorized in 1996 and again in 2000.

Like many health problems, HIV disease disproportionately strikes people in poverty, racial/ethnic populations, and others who are underserved by healthcare and prevention systems. HIV often leads to poverty due to costly healthcare or an inability to work that is often accompanied by a loss of employer-related health insurance. CARE Act-funded programs are the “payer of last resort.” They fill gaps in care not covered by other resources. Most likely users of CARE Act services include people with no other source of healthcare and those with Medicaid or private insurance whose care needs are not being met.

CARE Act services are intended to reduce the use of more costly inpatient care, increase access to care for underserved populations, and improve the quality of life for those affected by the epidemic. The CARE Act works toward these goals by funding local and State programs that provide primary medical care and support services; healthcare provider training; and technical assistance to help funded programs address implementation and emerging HIV care issues.

The CARE Act provides for significant local and State control of HIV/AIDS healthcare planning and service delivery. This has led to many innovative and practical approaches to the delivery of care for PLWH.

CARE Act Structure  TOP

The CARE Act is the largest Federal government program specifically designed to provide services for PLWH. Its funding has grown along with the number of HIV/AIDS cases and treatment costs.

The Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB) has lead responsibility for implementing the CARE Act. HRSA is an agency of the U.S. Department of Health and Human Services (HHS). CARE Act programs include:

• Title I – Local Areas
  
  Title I eligible metropolitan areas (EMAs) are urban areas hardest hit by the HIV/AIDS epidemic. EMAs may use funds for HIV/AIDS primary care and support services that enhance access to and retention in primary care. Funds may also be used for early intervention services to move PLWH into care. Grants are awarded to local governments. They, in turn, award funds to providers based on service priorities established by the Title I planning council that is convened by the EMA to carry out HIV/AIDS planning. Supplemental awards are based in part on the EMA’s ability to document severe need for additional funding and the capacity to meet that need.
  
  
• Title II – States
  
  States and territories are funded under Title II to improve access to primary care and support services that enhance access to and retention in primary care. Funds may also be used for early intervention services to move PLWH into care. States have program flexibility to ensure a basic standard of care across their diverse service areas. They may support five different programs:

1. Medications to treat HIV disease (AIDS Drug Assistance Program, ADAP)
2. HIV care consortia (groups similar to Title I planning councils)
3. Services provided directly by States or State contracts
4. Health insurance coverage, and
5. Home and community-based services.

• Title III – Community-Based Programs
  
  Public and private nonprofit primary care providers receive grants for outpatient early intervention services (i.e., comprehensive primary health care and other services, including HIV counseling, testing, and referral). The Amendments of 2000 established Title III capacity development and planning grants that prepare agencies to provide early intervention services.
   
  
• Title IV – Children, Youth, and Women with HIV Disease and Their Families
  
  Funds go to public and private nonprofit entities to coordinate services for infants, children, youth, women, and families and to provide them medical care, support services, and access to research.
   
  
• Special Projects of National Significance (SPNS) – Research Models
  
  Funds go to public and private nonprofit entities to develop innovative models of HIV/AIDS care, including projects targeting Native American/Alaskan Native populations.
   
  
• HIV/AIDS Dental Reimbursement Program – Oral Health Care
  
  Funds go to dental schools and dental hygiene programs, and community-based providers collaborating with them, to help cover the uncompensated costs of providing oral health care to PLWH.
   
  
• AIDS Education and Training Centers (AETC) – Provider Training
  
  Funds go to a network of regional and national entities to conduct multi-disciplinary HIV-related education and training for health care providers. The goal is to increase the number of trained HIV providers and to help prevent HIV transmission. AETCs also disseminate treatment information to health care providers and patients.

The HIV/AIDS Bureau’s (HAB) CARE Act programs are administered as follows:

• Office of the Associate Administrator for HIV/AIDS (OAA) provides the overall leadership and direction for the HIV/AIDS Bureau through the administration and management of its operations and policies.
  
• Division of Service Systems (DSS) administers Title I and Title II, including the AIDS Drug Assistance Program (ADAP).
  
• Division of Community Based Programs (DCBP) administers Title III, Title IV, and the HIV/AIDS Dental Reimbursement Program.
  
• Office of Science and Epidemiology (OSE) administers the SPNS Program; oversees research and evaluation studies related to the effectiveness of the CARE Act and each of its programs; analyzes service data submitted by CARE Act programs; and assesses the success of the Bureau’s programs in achieving their goals and objectives.
  
• Division of Training and Technical Assistance (DTTA) administers the AETC program; oversees HAB planning, training, and technical assistance activities; coordinates quality management/improvement activities of HAB; and coordinates most HAB external meetings.
  
• Office of Policy and Program Development (OPPD) serves as the focal point for the Bureau's policy, regulatory, strategic planning, performance monitoring, document clearance, and program development activities. OPPD also conducts policy studies to inform future policy and legislative decisions and coordinates HAB collaboration with Federal benefit programs, including the review of Medicaid waiver applications. OPPD also provides guidance on interpretation of CARE Act legislative provisions and their implementation.
  
• Office of Program Support (OPS) oversees HAB administrative management support activities and policies and serves as the Associate Administrator’s principal source of management advice.

Title I: Emergency Relief Grants to Eligible Metropolitan Areas (EMAs)  TOP

Although the epidemic has intensified in small towns and rural areas in recent years, the majority of reported HIV/AIDS cases continue to be in urban and suburban areas, particularly the Nation’s largest metropolitan areas. The Title I program provides emergency relief grants to these areas.

Each EMA encompasses an urban center plus surrounding counties and localities included within its Metropolitan Statistical Area (MSA)—a geographic area established by the U.S. Census Bureau that may cross State lines. Title I funds are awarded to local governments (grantees) who work with Title I planning councils to assess the unmet needs of PLWH in the EMA and determine how to address them. (Requirements for making this unique partnership work effectively are outlined below.)

The 51 EMAs meet the following Title I eligibility criteria: they are metropolitan areas with a population over 500,000 reporting more than 2,000 AIDS cases for the most recent five-year period.

Each EMA’s grant consists of a “formula” and “supplemental” part.

• The formula part is based on the estimated number of persons living with AIDS in the EMA in each of the last ten years, with greater weight given to more recent years. The CARE Act Amendments of 2000 require that, beginning in FY 2005, formula awards be based on the prevalence of HIV disease if the Secretary of Health and Human Services has determined that HIV surveillance data are adequate for doing so. In any case, HIV prevalence data will be used for making awards beginning in FY 2007.
  

• The supplemental part is based on the EMA’s ability to document severe need for additional funding and the capacity to use funds to meet community needs.

Use of Title I Grants  TOP

Title I funds support a comprehensive continuum of quality, community-based care for low-income individuals and families with HIV disease. This includes primary medical care that is consistent with Public Health Service Treatment guidelines. Services include:

• Outpatient and ambulatory health care, including HIV specialty care, substance abuse and mental health treatment, oral health, and home health or hospice care.
  
• Comprehensive treatment services including treatment education and prophylaxis/treatment for opportunistic infections.
  
• Case management services that prevent unnecessary hospitalization or expedite discharge as medically appropriate.
  
• Support and health services that enhance access to and retention in primary medical care and promote health and quality of life.
  

• Outreach activities and Early Intervention Services (EIS) to identify and link with care individuals with HIV disease who know their HIV status and are not receiving HIV-related medical care. The grantee must demonstrate that other sources of funds are insufficient to respond to these healthcare needs and that Title I funds will supplement but not supplant other funds available for early intervention.

EMAs may award funds to public, nonprofit entities—or to private for-profit entities if they are the only available providers of HIV/AIDS care in the area. Eligible organizations include community-based organizations, ambulatory care facilities, community health centers, migrant health centers, homeless health centers, substance abuse treatment programs, mental health programs, hospitals, and hospices.

Managing Funds: Title I Grantees  TOP

Title I funds are awarded to the chief elected official (CEO), usually the Mayor or County Executive of the city or county within the EMA providing outpatient and ambulatory services to the greatest number of people with AIDS living in the eligible area. CEOs are responsible for establishing Title I planning councils and share some duties with them. Planning councils are broadly representative of the community.  They plan and set priorities for the allocation of funds. Grantees, in turn, must allocate funds according to these priorities and do so through their local procurement systems. Planning councils may not be directly involved in designating or selecting grant recipients or in administering CARE Act grants (i.e. participating in or sitting on panels that review funding applications for services in the EMA).

The CEO retains ultimate responsibility for submitting grant applications, ensuring that funds awarded are used appropriately, and complying with reporting or other requirements. However, most CEOs delegate day-to-day responsibility for administering their Title I award to the local health department.

Both the grantee and the planning council must establish their own grievance procedures for addressing grievances with respect to funding. These must include procedures for submitting—to mediation and binding arbitration—grievances that cannot otherwise be resolved. Grievance procedures must be consistent with HAB-developed models and must be approved by HAB.

In administering Title I funds to ensure they are used appropriately and fairly, grantees must:

• Establish intergovernmental agreements (IGAs) with other jurisdictions within the EMA that provide HIV-related services and that account for at least 10 percent of the EMA’s reported AIDS cases. Allocation of funds and services to the other jurisdictions are based on these agreements.
  

• Ensure the delivery of services to women, infants, children, and youth with HIV disease. Every EMA must allocate funds for each of these groups in an amount proportional to their representation among the EMA’s total AIDS cases. A waiver may be granted if the EMA can demonstrate to HRSA’s satisfaction that one or more of these priority populations are receiving HIV-related health services through Medicaid, the State Children’s Health Insurance Program, or other Federal/State programs, including other CARE Act programs. 
  
• Use grant funds to supplement, not replace, local funds provided for HIV-related services. Jurisdictions within an EMA that receive Title I funds must maintain their prior year’s level of spending for HIV-related care and may not use CARE Act funds to replace these expenditures.
  
• Not use Title I funds to provide or support services that are reimbursable under any other program.
  
• Require organizations or entities that receive Title I funds to participate in an HIV community-based continuum of care, if such exists.
  
• Provide Title I services regardless of an individual’s ability to pay or health condition, in settings that are accessible to low-income persons with HIV disease; outreach must be provided to inform them of the availability of services.
  

• Ensure that if providers charge a fee, a sliding scale is used that considers the patient's income level and limits charges to a fixed percent of an individual's yearly income.
  

• Establish a quality management program to ensure that services provided are consistent with the most recent Public Health Service guidelines and that services are consistent with guidelines to improve access to and quality of HIV health services.
  
• Require providers receiving Title I funds to maintain “appropriate relationships with entities that constitute key points of access to the health care system.”  The CARE Act defines these points of access to include such entities as:

• Emergency rooms
• Substance abuse treatment programs
• Detoxification centers
• Adult and juvenile detention facilities
• Sexually transmitted disease clinics
• HIV counseling and testing sites
• Mental health programs
• Homeless shelters
• Public health departments
• HIV counseling and testing sites
• Federally qualified health centers, and
• Other specified health care points of entry.

• Expend Minority AIDS Initiative (MAI) funds received by the Title I grantee to serve disproportionately-impacted minority clients in a manner consistent with legislative intent and HRSA/HAB guidelines.

Funds used to administer the grant must be limited as follows:

• No more than 5 percent of funds may be used for routine grant administration and monitoring. This includes developing the annual funding application, developing reimbursement and accounting systems, preparing routine program and financial reports, meeting audit requirements, and carrying out activities related to awarding local contracts.
  
• Up to 5 percent of the grant, or $3 million (whichever is less) may be used for quality management programs.
  
• Local providers and subcontractors and other entities may not collectively spend more than 10 percent of all funds for administrative expenses. This includes “usual and recognized” overhead, management, and oversight of programs, and program support activities such as quality assurance.
  

• No funds may be used for construction, land purchase, or cash payments to intended recipients of services.

Planning Councils  TOP

Planning councils are diverse membership bodies, required by the CARE Act, that are established to plan and decide how to use Title I funds. They work in partnership with the grantee in carrying out needs assessment, comprehensive planning, capacity development, and services evaluation activities. Planning council responsibilities (including duties shared with grantees, which are denoted by a +) are to:

• Determine the size and demographics of the population with HIV disease. +
  
• Determine the needs of that population. They must give special attention to identifying the needs of those who know their HIV status and are not in care and disparities in access and services among affected subpopulations and historically underserved populations. They must use a public process for obtaining community input on needs and priorities. +
  
• Develop a comprehensive plan for the organization and delivery of HIV services, compatible with existing State and local plans. +
  
• Participate in developing a Statewide Coordinated Statement of Need (SCSN), a mechanism for CARE Act programs to address key HIV/AIDS care issues and enhance coordination. +
  
• Coordinate with Federal grantees that provide HIV-related services. +
  
• Establish priorities for the allocation of funds. Decisions are to be based on needs assessment (with particular attention to the unmet needs of those with HIV disease who are not in care), the cost effectiveness and outcome effectiveness of specific services, priorities of HIV-infected communities, and availability of other governmental and non-governmental resources.
  
• Assess the efficiency of the administering agency in rapidly allocating funds to areas of greatest need.

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

Planning councils must also include representatives of the following:

• Health care providers, including Federally qualified health centers
• Community-based organizations serving affected populations and AIDS service organizations
• Social service providers (which are to include housing and homeless-services providers)
• Mental health providers
• Substance abuse providers
• Local public health agencies
• Hospital planning agencies or health care planning agencies
• Affected communities, including individuals with HIV disease and historically underserved groups and subpopulations
• Non-elected community leaders
• State Medicaid agency
• State agency administering the Title II program
• Title III grantees
• Title IV grantees (or, if no Title IV grantee exists, representatives of organizations in the EMA with a history of serving children, youth, and families living with HIV disease)
• Grantees under other Federal HIV programs (which are to include HIV prevention programs), and
• Formerly incarcerated PLWH or their representatives.

Planning Council Procedures. Planning councils must have in place a variety of policies and procedures, including the following:

• Nominations for members based on an open process, with criteria clearly stated and publicized, including a conflict of interest standard
• Training for planning council members so they are able to fully participate 
• Leadership procedures ensuring that the planning council is not chaired solely by an employee of the grantee
• Planning council meetings that are open to the public and minutes that are publicly available and that protect the medical privacy of individuals
• Bylaws that establish how the planning council will conduct business, and
• Grievance procedures with respect to funding, including procedures for submitting grievances that cannot be resolved informally or by mediation to binding arbitration.

Technical Assistance                       

The legislation authorizes technical assistance (TA) to help programs comply with CARE Act requirements. This includes peer TA and assistance to planning councils.[1]

CARE Act Amendments of 2000  TOP

The CARE Act Amendments of 2000 include important changes and additions to the CARE Act. This manual provides guidance for implementing the entire CARE Act, including new and continuing requirements and responsibilities for EMAs—most of which are further described in the sections on Planning Council Operations and Program Guidance. The chart below indicates where in this manual more detailed information can be found.

Notes

[1] See the chapter on Technical Assistance for CARE Act Grantees and Planning Councils. [Return to Text]