| |
| Tools for Grantees: |
CARE
Act Title II Manual - 2003 Version |
<
Previous
| Home |
Next >
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.
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:
- Medications
to treat HIV disease (AIDS Drug Assistance Program, ADAP)
- HIV care
consortia (groups similar to Title I planning councils)
- Services
provided directly by States or State contracts
- Health insurance
coverage, and
- 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 Need
|
Planning
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 need
|
HAB/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
Plan
|
Plan must
include a strategy for getting people into care
|
Plan 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 treatment
|
Plan 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 needs
|
Council
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 plans
|
Council’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 care
|
Outreach
services receive increased emphasis
|
Title 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 care
|
Support
services must now be linked to primary care
|
Support
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 care
|
Quality
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
|
|
Planning
|
Planning
boides must consult with the same type of entities required
to be represented on Title I planning councils
|
Health
care providers, CBOs and ASOs, social service providers including
providers of housing and homless services, mental health and
substane abuse providers, local public health agencies, hospitalplanning
agenices or health care planning agencies, afected communitieis
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 servifces,
and representatives of individuals who formerly were Federal,
State, or local prisoners |
Section
VI, Planning Bodies
|
|
Public advisory
process
|
The 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 representatives
|
Section
VI, Planning Bodies
|
|
Services
for women, infants, children, and youth
|
Funding
allocations are specified for health and support services
for infants, children, youth, and women with HIV disease
|
Each 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 cases
|
Title 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
|
|
