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H H S Department of Health and Human Services
Health Resources and Services Administration
HIV/AIDS Programs

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CARE Act Title II Manual - 2003 Version

I. General Information

1. Overview of the Ryan White CARE Act

Introduction

  1. CARE Act Structure
  2. Guiding Principals for CARE Act Programs
  3. CARE Act Amendments of 2000

Chapter 1
Overview of the Ryan White CARE Act

Introduction TOP 

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.

CARE Act Funding 

Fiscal Year
Amount
1991
$220,553,000
1992
$279,086,000
1993
$348,013,000
1994
$579,365,000
1995
$632,965,000
1996
$738,465,000
1997
$996,252,000
1998
$1,150,200,000
1999
$1,411,300,000
2000
$1,594,550,000
2001
$1,807,700,000
2002
$1,919,609,000

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.

Guiding Principles for CARE Act Programs TOP

The CARE Act addresses the 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. The following principles were crafted by HAB to guide CARE Act programs in implementing CARE Act provisions and emerging challenges in HIV/AIDS care:
  • Revise care systems to meet emerging needs. The CARE Act stresses the role of local planning and decision making—with broad community involvement—to determine how to best meet HIV/AIDS care needs. This requires assessing the shifting demographics of new HIV/AIDS cases and revising care systems (e.g., capacity development to expand available services) to meet the needs of emerging communities and populations. A priority focus is on meeting the needs of traditionally underserved populations hardest hit by the epidemic, particularly PLWH who know their HIV status and are not in care. This entails outreach, early intervention services (EIS), and other needed services to ensure that clients receive primary health care and supportive services—directly or though appropriate linkages.
  • Ensure access to quality HIV/AIDS care. The quality of HIV/AIDS medical care—including combination antiretroviral therapies and prophylaxis/treatment for opportunistic infections—can make a difference in the lives of PLWH. Programs should use quality management programs to ensure that available treatments are accessible and delivered according to established HIV-related treatment guidelines.
  • Coordinate CARE Act services with other health care delivery systems.  Programs need to use CARE Act services to fill gaps in care. This requires coordination across CARE Act programs and with other Federal/State/local programs. Such coordination can help maximize efficient use of resources, enhance systems of care, and ensure coverage of HIV/AIDS-related services within managed care plans (particularly Medicaid managed care).
  • Evaluate the impact of CARE Act funds and make needed improvements.  Federal policy and funding decisions are increasingly determined by outcomes. Programs need to document the impact of CARE Act funds on improving access to quality care/treatment along with areas of continued need. Programs also need to have in place quality assurance and evaluation mechanisms that assess the effects of CARE Act resources on the health outcomes of clients.

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.

CARE Act Amendments of 2000:
Summary of Additions and Changes to Title II  TOP 

Issue

Focus of Addition or Change

Description

Manual Section/Chapter

Estimating Unmet NeedPlanning councils must estimate unmet need as part of the needs assessment process

Planning council must “determine the size and demographics of the population of individuals with HIV disease” and then “determine the needs of such population, with particular attention to—

  • “individuals with HIV disease who know their HIV status and are not receiving HIV-related services; and
  • “disparities in access and services among affected subpopulations and historically underserved communities”
Section VIII, Program Guidance, Chapter 1, Needs Assessment
HAB/DSS will assist grantees in estimating unmet needHAB/DSS and grantees are to work together to develop epidemiologic measures “for establishing the number of individuals living with HIV disease who are not receiving HIV-related health services”
Comprehensive PlanPlan must include a strategy for getting people into carePlan must include “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”

Section VIII, Program Guidance, Chapter 2, Comprehensive Planning

Section VI, Planning Bodies, Chapter 1, Planning Body Duties

Plan must provide for coordination with prevention and substance abuse prevention and treatmentPlan must include “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)”
Planning council must consider capacity development needsCouncil must respond to “the capacity development needs resulting from disparities in the availability of HIV-related services in historically underserved communities.”
Plan must be compatible with other HIV plansCouncil’s plan must be “compatible with any State or local plan for the provision of services to individuals with HIV disease,” particularly the SCSN
Getting HIV-positive people who know their status into careOutreach services receive increased emphasisTitle II funds may be used for “outreach activities that are intended to identify individuals with HIV disease who know their HIV status and are not receiving HIV-related services”—in order to get them into care.Section VIII, Program Guidance, Chapter 5, Early Intervention Services
Title II funds may now be used to fund Early Intervention Services (EIS)Title II funds may now be used for EIS, if the grantee demonstrates (a) unmet need for these services, and (b) that other sources of funds are insufficient to respond.
Relationships must be developed with entities that serve as “Points of Entry” to care  Providers receiving Title II funds must maintain “appropriate relationships with entities that constitute key points of access to the health care system.”  Points of access include: 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, and homeless shelters, among other entities.
Emphasis on primary careSupport services must now be linked to primary careSupport services should “facilitate, enhance, support, or sustain the delivery, continuity, or benefits of health services for individuals and families with HIV disease.”Section VIII, Program Guidance, Chapter 4, Quality Management
Ensuring the quality of careQuality management programs must be established

  • EMAs are required to establish a quality management program that measures the extent to which providers are using the latest Public Health Service Treatment guidelines, and must develop strategies for ensuring that services are consistent with the guidelines.

  • EMA may spend up to 5% of total grant or $3 million, whichever is less, to support such programs.

Section VIII, Program Guidance, Chapter 4, Quality Management
PlanningPlanning boides must consult with the same type of entities required to be represented on Title I planning councilsHealth care providers, CBOs and ASOs, social service providers including providers of housing and homeless services, mental health and substance abuse providers, local public health agencies, hospital planning agencies or health care planning agencies, affected communities including PLWH and historically underserved groups and subpopulations, nonelected community leaders, other State agencies such as Medicaid, Title III and Title IV grantees including HIV prevention services, and representatives of individuals who formerly were Federal, State, or local prisonersSection VI, Planning Bodies
Public advisory processThe State must engage in a public advisory process including public hearings that includes individuals with HIV disease, representatives of Title II providers, and public agency representativesSection VI, Planning Bodies
Services for women, infants, children, and youthFunding allocations are specified for health and support services for infants, children, youth, and women with HIV diseaseEach EMA must allocate funds for each group in an amount no less than the proportion that each is represented in the total AIDS cases in the EMA.Section VIII, Program Guidance
Funding based on HIV cases as well as AIDS casesTitle II grants may be based on data on cases of HIV disease (i.e., reported AIDS cases and HIV-infections that have not yet progressed to AIDS) rather than AIDS cases if data are sufficient for doing so.As of FY 2005, formula grants are to be awarded based on cases of HIV disease rather than AIDS cases if the Secretary of Health and Human Services has determined that HIV surveillance data are adequate for doing so. An Institute of Medicine Study will address this issue, and the Centers for Disease Control and Prevention will confirm the reliability of such data. If data are not sufficient by FY 2005, their adequacy will be reconsidered for FY 2006. HIV prevalence data will in any case be used for making awards for FY 2007.Section I, Overview of the CARE Act