Department  of Health  and Human  Services 
OFFICE OF 
INSPECTOR GENERAL 
THE  RYAN  WHITE  CARE  ACT: 
LOCAL  IMPLEMENTATION  ISSUES  OFFICE OF INSPE(XOR  GENERAL 
The missionof the Office of InspectorGeneral(OIG), asmandatedbyPublicLaw 95-452,as 
amended, is to protect the integrityof the Department of Health and Human Services (HHS) 
programsaswellasthehealthandwelfareof beneficiariesservedbythoseprograms. This 
statutorymissioniscarriedout throughanationwidenetworkof audits,investigations,and 
inspectionsconductedby threeOIG operatingcomponents:  the Office of AuditServices,the 
Office of Investigations,andthe Office of EvaluationandInspections. The OIG alsoinforms 
the Secretaryof HHS of program and managementproblems and recommends courses to 
correct them. 
OFFICE OF AUDIT  SERVICES 
The OIGS Office of AuditServices(OAS) providesallauditingservicesfor HHS, eitherby 
conductingauditswithitsown auditresourcesor byoverseeingauditworkdone byothers. 
Auditsexaminetheperformanceof HHS programsand/oritsgranteesandcontractorsin 
carryingout their respective responsibilitiesand are intended to provide independent 
assessmentsof HHS programsandoperationsinorderto reducewaste,abuse,and 
mismanagementandto promote economy andefficiencythroughouttheDepartment. 
OFFICE OF INVESTIGA~ONS 
The OIGS Office of Investigations(01) conducts criminal,civil, and administrative 
investigationsof allegationsof wrongdoinginHHS programsor to HHS beneficiariesandof 
unjustenrichmentby providers. The investigativeefforts of 01 lead to criminalconvictions, 
administrativesanctions,or civil money penalties. The 01 also oversees State Medicaid fraud 
control unitswhichinvestigateandprosecutefraudandpatientabusein theMedicaidprogram. 
OFFICE OF EVALUATION  AND  INSPECTIONS 
The OIGS Office of EvaluationandInspections(OEI) conductsshort-termmanagementand 
programevaluations(calledinspections)thatfocus on issuesof concern to theDepartment, 
the Congress, and the public. The findingsand recommendationscontained in these inspection 
reportsgeneraterapid,accurate,andup-to-dateinformationon theefficiency,vulnerability, 
and effectiveness of departmentalprograms. 
Thisreportwaspreparedunderthedirectionof WilliamC. Moran,Regional Inspector 
General,andNatalieCoen, DeputyRegionalInspectorGeneral,Office of Evaluationand 
Inspections,Region V.  Participatingin thisproject were:

REGION V
 REGION II 
Joseph L. Penkrot (Project Leader)
 Lucille Cop 
Ellen R. Meara

BarbaraButz
 HEADQUARTERS 
WilliamMoran
 Alan S. Levine 
For a copy of this report, please call (312) 353-4124.
 Department  of Health  and Human  Services 
OFFICE OF

INSPECTOR GENERAL

THE  RYAN  WHITE  CARE  ACT:

LOCAL  IMPLEMENTATION  ISSUES 
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0EI-05-93-O0336  EXECUTIVE  SUMMARY

PURPOSE 
To  describe  local implementation  issues facing Ryan White grantees. 
ReauthcnizationStudies 
The Ryan White  Comprehensive  AIDS  Resources  Emergency  Act  of  1990 (the Act) 
expires in 1995 and its first reauthorization  is pending before  Congress.  We  have 
previously examined  the Acts  funding formulas, reviewed  data on expenditures,  and 
analyzed consortia  activities and special projects  of national significance.  In addition, 
we studied current Centers for Disease  Control  and Prevention  statistics and other 
reports  describing the spread of the disease, 
In this current report,  we utilize data both  from  our previous reports  and from  more 
current field work in developing  our findings and recommendations.  The more  recent 
field work  occurred  in seven major  cities that comprise  43 percent  of the 1994 Title I 
Ryan White  funding.  As a part of our visits to those cities, we reviewed  funding and 
service plans along with progress reports;  listened to issues discussed and 
deliberations  held at planning council and committee  meetings; visited and observed 
on-going  operations  at a wide variety of local providers who receive  funding from  a 
variety of sources including Ryan White;  examined minutes of meetings  and other 
material collected  on site; and held discussions with a range of respondents  including 
public health officials, grantee administrators, local providers,  and persons with 
HIV/AIDS. 
BACKGROUND 
The Act was created  as a comprehensive  response  to the HIV  epidemic  and its impact 
on individuals, families, communities,  cities, and States.  The Act was designed  to 
provide  health care to those who would  otherwise not have access to health care.  It 
was also meant to provide  emergency  relief funding to communities  with the highest 
number  of reported  AIDS  cases. 
The Health  Resources  and Services Administration  (HRSA)  within the Public Health 
Service administers the Act.  In fiscal year 1994, grantees received  $579.4 million in 
Ryan White  funds from  the funded  provisions  of the Act. 
i  FINDINGS 
ErnagingHWL41DSpopulationspresentservicedeliveqproblem for Ryan U%ite 
grantetn 
HIV/AIDS  is increasing among minorities, women,  immigrants, young people,  and 
those who  do not speak English.  In all likelihood,  the number  of those infected  in the 
emerging HIV/AIDS  populations  is greatly underestimated.  In minority, immigrant, 
and non-English  speaking communities,  cultural mores  often  discourage  those who 
might be  infected  with HIV/AIDS  from being tested or seeking treatment.  The 
emerging populations  affected  by HIV/AIDS  are difficult to serve because  of their 
many needs  and often their overwhelming  poverty further complicates  their treatment. 
In addition to living with HIV/AIDS,  they may also suffer from  substance  abuse or 
addiction,  hopelessness,  mental illness, or other conditions  requiring considerable  care. 
Inspiteof Mom  bygrantees,manyrespondentsbelievethatRyan Whiteprogramsdo not 
serveminoritiesandotheremeq$ngpopulationsas wellas theyshould 
In each city visited, respondents  spoke  of the gaps in services or lack of facilities for 
these populations.  Many also pointed  to the lack of cultural, language, or gender 
appropriate  programs.  In some  cities, services for emerging populations  exist, but 
geography  and/or  lack of transportation  make them difficult to access. 
Littleprogramoutcomeevaluationhasbeen undertakenat thenutionalor locallevelk 
While individual success stories in problem  areas can be identified  in each community 
we visited, little program  outcome  evaluation has been  undertaken  that measures 
whether  the Act is accomplishing  its overall goals.  Client satisfaction surveys are 
relatively widespread  among providers  at the local level, but these surveys are limited 
to an assessment of an individual providers  services rather than a comprehensive 
evaluation  of the Ryan White program  in their communities. 
RECOMMENDATIONS 
llaeHW  shouldworkwithRyanWhitegranteesto identifianddisseminatewaysto 
servethe emergingpopulationsaffectedbyHW/!S 
Thel%blicHealthServiceshoulddeveihppracticalwaysto determinewhetherRyan 
Whiteprogramgoak arebeingaccomplkhedoverallandby individuaglrantees 
ii  AGENCY  COMMENTS 
We  received  comments  from the Assistant Secretary for Planning and Evaluation,  and 
the Assistant Secretary for Health.  Both support the recommendations  and suggested 
pertinent clarifications.  Their comments  are included  in Appendices  A  and B 
respectively.  We  made  appropriate  revisions to the report based  on their comments. 
... 
111  TABLE  OF  CONTENTS

PAGE

EXECUTIVE  SUMMARY

INTRODUCITON  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..1

FINDINGS.  . . . . . . . . . . . . . . . .  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...5

.Facing  servked  elivery  problems  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...5

.Difficulties  servingnewHIv/~Ds  populations  . . . . . . . . . . . . . . . . . . . . . . . . . .  7


Evaluating  the  Ryan  White  program  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..,8

RECOMMENDATIONS  . . . . . . . . . . . . ...............................11

AGENCY  COMMENTS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...12

APPENDIX  A  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..  A-l

APPENDIX  B  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..  B-l
 INTRODUCTION

PURPOSE 
To  describe  local implementation  issues facing Ryan White grantees. 
Reauthokation Stu&s 
The Ryan White  Comprehensive  AIDS  Resources  Emergency  Act  of  1990 (the Act) 
expires in 1995 and its first reauthorization  is pending before  Congress.  We  have 
previously examined  the Acts  funding formulas, reviewed  data on expenditures,  and 
analyzed consortia  activities and special projects  of national significance.  In addition, 
we studied current Centers for Disease  Control  and Prevention  statistics and other 
reports  describing the spread  of the disease. 
In this current report, we supplement  previously acquired  data with observations  and 
discussions at the local level.  These  included  our attending planning council  and 
committee  meetings; visiting local project  sites and providers;  holding  discussions with 
grantee administrators, project  staff, providers,  and persons with HIV/AIDSl;  and 
reviewing funding and service plans, and progress reports. 
This study is complemented  by another report, Eramplesof Local  Coordination  (OEI-
05-93-00335)  that describes  experiences  of Ryan White grantees.  The  previous  Ryan 
White  CARE  Act  reports  are:  Funding  Fomwlas  (OEI-05-93-00330);  FY  1992  ~tle I 
and  Title 11 Expendinues  (OEI-05-93-00331);  Consoma Activities  (OEI-05-93-O0333); 
FY  1992  Special  Projects  of National  Significance  - Expenditures  by Service  (OEI-05-93-
00332);  and, Technical  Repoti  of 1992  Expenditures  (OEI-05-93-O0334).  The  General 
Accounting  Office  (GAO)  recently released  a report  describing the extent to which 
Ryan White  services are provided  to minorities, women,  and substance  abusers.  While 
GAO  did not examine the barriers to providing Ryan White  semices  to these emerging 
HIV/AIDS  populations,  their findings dovetail with this report  regarding grantees 
limitations in treating these populations. 
BACKGROUND 
In response  to over  128,000 cases of AIDS  reported  to the Centers for Disease 
Contr~l and Prevention  (CDC),  the 78,000 AIDS deaths, and the nearly one million 
infected  with HIV,  Congress  passed The Ryan White  Comprehensive  AIDS  Resources 
Emergency  Act  of  1990.  The Act was created  as a comprehensive  response  to the 
1 
Since the l@an White Act enables grantees to deliver a wide range of services to people alagnosed with either HIV or AIDS, 
thi.$report uses the term HIV/AIDY to refer to either or both groups of @an  White clienti. 
1  HIV  epidemic  and its impact  on individuals, families, communities,  cities, and States. 
The Act was designed  to provide  health care to persons with HIV/AIDS  who would 
otherwise not have access to health care.  It was also meant to provide  emergency 
relief funding to communities with the highest number  of reported  AIDS  cases. 
Congress  attempted  to meet  a number  of needs with the Act.  They attempted  to 
address the needs  of urban areas hit hardest by the epidemic,  and to assist smaller 
cities and rural areas experiencing  rapid rates of growth.  They also intended  to 
confront  emerging problems  facing local public and private organizations. 
As  a result, the Act  is multifaceted,  with four titles directing resources  to various 
entities and allowing grantees maximum flexibility in the use of funds, particularly at 
the local level.  The  Federal  role is minimized in favor of State and local  control.  The 
Health Resources  and Services Administration  (HRSA)  within the Public Health 
Service administers the Act.  In fiscal year (FY)  1994, grantees received  $579.4 million 
in Ryan White funds. 
Title I - Grants to Cities 
Title I provides  emergency  relief grants to eligible metropolitan  areas (EMAs) 
disproportionately  affected  by the HIV  epidemic.  Congress intended  these funds to 
relieve the overwhelming  burden  that HIV  imposed  on urban health care systems. 
Grants are for HIV-related  outpatient  and ambulatory health and support  services, 
including case management  and comprehensive  treatment services.  Title I funds 
comprise  56 percent  of the FY  1994 Ryan White  appropriation. 
Grants are awarded  to cities, specifically to the chief elected  official  (CEO)  that 
administers the public  agency providing outpatient  and ambulatory services to the 
greatest number  of individuals with AIDS,  in most cases the public health agency. 
Under  Title I, the CEO  is required  to establish a planning council representing  health 
and social service agencies, individuals with AIDS,  State government,  community 
leaders, AIDS  organizations,  and others.  This planning council is responsible  for:  (1) 
establishing priorities for the allocation  of funds, (2)  developing  a comprehensive  plan 
for the organization  and delivery of services, and (3)  assessing the efficiency  of the 
administrative mechanism  in rapidly allocating the funds to areas of greatest need 
within the EMA. 
Public or non-profit  private organizations  are eligible for funding to provide  services 
on a contract basis with the EMA.  These  organizations include hospitals, community-
based  organizations,  hospices,  ambulatory  care facilities, community, homeless  and 
migrant health centers. 
L  Title II- Grants to States 
Title II provides  grants to States and territories to improve  the quality, availability and 
organization  of health care and support  services for individuals and families with HIV 
disease.  A major intent of Title II was to develop  service delivery systems to provide 
essential services throughout the complex  course of HIV  disease.  Title II funds 
comprise  32 percent  of the FY  1994 Ryan White  appropriation. 
States have the option  of using Title II funds in one  or more  of the following ways. 
They may establish HIV  care consortia  in areas most directly affected  by the disease. 
Consortia  are community-based,  coordinated,  continuums of care to which all persons 
with HIV/AIDS  would  have access.  These  continuums of care are intended  to close 
existing gaps in services, coordinate  health and support  services, build community 
infrastructure and service networks with an emphasis on integration of expanded 
community resources,  and provide  continuity of care through case management. 
Other State options  for Title 11funds include providing home  and community-based 
care services, including outreach  services to individuals in rural areas.  States may also 
furnish medications  that prolong  life or prevent serious deterioration  of health.  In 
addition, they may also provide  assistance to assure the continuity of health insurance 
coverage. 
Title III(b)  - Grants to Communitv Health Providers 
Title III(b)  supports  early intemention  services on an out-patient  basis, including 
counseling, testing, referrals, clinical and diagnostic services, and other therapeutic 
services.  It provides  competitive  grants to private non-profit  organizations  and public 
migrant, community,  and homeless  health centers, hemophilia  centers, and federally-
qualified health centers.  Title III(b)  funds comprise  8 percent  of the FY  1994 Ryan 
White  appropriation. 
Title IV - Grants for Pediatric AIDS 
Title IV aims to improve  and expand the system of comprehensive  care services and 
increase  access to research for children, youth, women  and families who  are infected 
with or affected  by HIV/AIDS.  Title IV grantees provide,  arrange, or coordinate  a 
wide range of services.  These  services include prevention  and education  activities, 
primary medical  care, psychosocial  services, substance abuse treatment, housing, child 
welfare,  legal advocacy,  and other support  activities.  Comprehensive  systems of care 
are linked with clinical research trials and other research activities, intended  to 
increase  access for a target population  of children, youth, women  and families.  Title 
IV funds comprise  4 percent  of the FY  1994 Ryan White  appropriation. 
3