Department  of Health  and Human  Services 
OFFICE  OF 
INSPECTOR  GENERAL 
HIV/AIDS:  NURSING  HOME 
DISCRIMINATION  COMPLAINTS 
AUGUST  1993  OFFICE  OF INSPECTOR  GENERAL 
The mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452, as 
amended, is to protect the integrity of the Department  of Health and Human Services (HHS) 
programs as well as the health and welfare of beneficiaries served by those programs.  This 
statutory mission is carried out through a nationwide network of audits, investigations, and 
inspections conducted by three OIG operating components:  the Office of Audit Services, the 
Office of Investigations, and the Office of Evaluation and Inspections.  The OIG also informs 
the Secretary of HHS of program and management problems and recommends courses to 
correct them. 
OFFICE  OF AUDIT  SERVICES 
The OIGSOffice of Audit Services (OAS) provides all auditing semices for HHS, either by 
conducting audits with its own audit resources or by overseeing audit work done by others. 
Audits examine the performance of HHS programs and/or its grantees and contractors in 
carrying out their respective responsibilities and are intended to provide independent 
assessments of HHS programs and operations in order to reduce waste, abuse, and 
mismanagement and to promote economy and efficiency throughout the Department. 
OFFICE  OF INVESTIGATIONS 
The OIGS Office of Investigations (01) conducts criminal, civil, and administrative 
investigations of allegations of wrongdoing in HHS programs or to HHS beneficiaries and of 
unjust enrichment by providers.  The investigative efforts of 01 lead to criminal convictions, 
administrative sanctions, or civil money penalties.  The 01 also oversees State Medicaid fraud 
control units which investigate and prosecute fraud and patient abuse in the Medicaid program. 
OFFICE  OF EVALUATION  AND  INSPECTIONS 
The OIGSOffice of Evaluation and Inspections (OEI) conducts short-term management and 
program evaluations (called inspections) that focus on issues of concern to the Department, 
the Congress, and the public.  The findings and recommendations contained in these inspection 
reports generate  rapid, accurate, and up-to-date information on the efficiency, vulnerability, 
and effectiveness of departmental  programs. 
This report was prepared  in the Philadelphia regional office under the direction of Joy Quill, 
Regional Inspector General and Robert A. Vito, Deputy Regional Inspector General.  Project 
staf~ 
REGION  HEADQUARTERS 
Isabelle Buonocore, Project Leader  Alan Levine, Program Specialist

Nancy J. Molyneaux, Lead Analyst  Barbara Tedesco, Mathematical Statistician

David F. Wright, Program Analyst

For additional copies of this report, please contact the Philadelphia regional office at (215)

596-0606.
 Department  of Health  and Human  Services 
OFFICE  OF 
NSPECTOR  GENERAL 
HIV/AIDS:  NURSING  HOME 
DISCRIMINATION  COMPLAINTS 
AUGUST  1993  0EI-03-91-O0960  EXECUTIVE  SUMMARY

PURPOSE 
This  report  (1) identifies  government  agencies  that  investigate  discrimination 
complaints  filed  against  nursing  homes  that  do not  admit  persons  with the  human 
immunodeficiency  virus  (HIV)  or acquired  immune  deficiency  syndrome  (AIDS),  and 
(2) describes  the  number  and  outcomes  of complaint  investigations. 
BACKGROUND 
As AIDS  takes  on characteristics  of chronic  illnesses,  the  need  for skilled  nursing  and 
long-term  care  becomes  more  urgent.  Studies  indicate  it is difficult  to find nursing 
homes  for persons  with AIDS  or HIV,  and  patients  may remain  in hospitals  longer 
than  necessary  because  nursing  home  care  cannot  be  found. 
Until  now, evidence  of nursing  home  admission  discrimination  against  persons  with 
AIDS  or HIV  has been  largely  anecdotal,  and  the  number  of complaints  filed 
nationwide  was unknown.  This  is the  first national  study to document  the  volume  of 
filed  complaints  and  describe  their  outcomes.  It is also the  first national  study to 
determine  the  complaint  system,  if any, at each  level  of government. 
We  conducted  this inspection  at the  Federal,  State,  and  local  levels of government.  At 
each  level, we identified  which  public  agencies  would  investigate  nursing  home 
admission  discrimination  complaints,  and  we interviewed  the  agency  representative. 
We  collected  data  on complaints  and  used  it to determine  who filed  complaints,  length 
of investigation  periods,  and  case  outcomes.  We  also analyzed  anti-discrimination  laws 
and  published  materials  informing  the  public  about  the  agency  and  how to file a 
complaint  with them.  At the  local  level we went  a step  further,  conducting  interviews 
and  analyzing  data  from  private  entities  that  provide  health  care  or social  services. 
FINDINGS 
Compikirm can be investigated at the Federa~ State, and local leveik 
	 Within  the  Department  of Health  and  Human  Services  (HHS),  the  Office  for 
Civil Rights  (OCR)  investigates  complaints. 
	 Under  certain  conditions,  the  Department  of Justice  and  the  Department  of 
Housing  and  Urban  Development  may investigate. 
	 Most  States  have  at least  one  investigating  agency.  However,  it is not  always 
clear  which  type  of agency  has this responsibility. 
  We found  few investigating  agencies  at the  local level. 
i  We found  615compikzintsfiled against musing homes from  1986 through 1991. 
.  More  than  half  thecomplaints  were  handled  atthe  Federal  level. 
.  There  were  far fewer  complainants  than  complaint  numbers  suggest. 
.	 Federal,  State,  and  local  respondents  believe  complaint  numbers  are  low 
compared  to actual  discrimination. 
Over half the case outcomes  involved corrective actions. 
.  Sixty-two percent  of Federal  and  State  outcomes  included  corrective  actions.

.  However,  few patients  gained  admission.

.  Fines  or monetary  penalties  were  rare.

.  The  majority  of complaints  took  over  6 months  to resolve.

I%e overaU complizint system k dijficult to use. 
.  Investigating  agencies  cannot  be  identified  easily. 
.	 Public  information  does  not  specifically  address  nursing  home  discrimination 
against  persons  with AIDS  or HIV  infection. 
.  Those  in a position  to file complaints  are  reluctant  to do so. 
RECOMMENDATIONS 
The  OCR  has  national  expertise  in the  area  of nursing  home  admissions  discrimination 
against  persons  with HIV  or AIDS.  Its national  database  can  identify  and  track  these 
complaints,  and  its printed  materials  specifically  address  this type  of discrimination  and 
how to file complaints.  Therefore,  we recommend  that  OCR 
	 lead  a departmental  initiative  with the  Public  Health  Service  (PHS),  the  Health 
Care  Financing  Administration  (HCFA),  and  the  Administration  on Aging 
(AoA)  to improve  public  information  about  the  occurrence  of this type  of 
discrimination  and where  to file complaints;  and 
  offer  technical  assistance  to State  and  local  governments. 
We  also recommend  that  OCR 
  meet  its 3-month  timeframe  for resolving  AIDS-related  complaints. 
ii  COMMENTS 
Four  HHSagencies  commented  onthedraft  ofthis  report:  the  OCR,  the  PHS,  the

HCFA,  and  the  AoA.  All commented  favorably  on working  together  on a

Department  initiative  to provide  the  public  with information.  None  disagreed  with the

desirability  of sharing  expertise  and  resolving  cases  faster.  But  an overriding  concern

was how to comply with  our  recommendations  with limited  resources.

We believe  the  agencies  involved  in the  initiative  could  assist each  other  in developing

creative  ways to  address  this concern  since the  need  for nursing  home  care  for persons

with AIDS  is likely to increase.

The  OCR  advised  us they  are  considering  a new policy which will require  that

complaints  involving health-endangering  situations  be  given priority  over  other

complaints.  The  proposed  policy would  replace  the  1987 requirement  to resolve

AIDS-related  cases  within  3 months.  We  continue  to recommend  that  OCR  meet  the

3-month  timeframe  on AIDS  cases  until  such time  as the  policy is officially replaced.

Regarding  the  agencies  general  and  technical  suggestions,  we adopted  several  which

made  the  narrative  clearer  but  did not  alter  our  meaning  or require  additional  data

collection.

The  full texts  of agency  comments  are  in Appendix  D.

... 
111  TABLE  OF  CONTENTS 
EXECUTIVE  SUMMARY 
INTRODUCTION.  . . . . . . . . . . . . . . .  . . . . . . . . . . . . . . . . .....  1 
FINDINGS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .....  5 
Investigating  agencies  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..   ..    .5 
Complaint  cases  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....  7 
Case  outcomes.  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...  11 
Complaint  system  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..  +.   O...  13 
RECOMMENDATIONS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...  16 
ENDNOTES  . . . . . . . . . . . . . . . . . . . .  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18 
APPENDICES

Federal  Investigating  Agencies.  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..A-1 
State  Investigating  Agencies..  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..B-l 
Local  Investigating  Agencies..  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..C-l 
Comments  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..  OO.O.$OOS D-l  INTRODUCTION 
PURPOSE 
This report  (1) identifies  government  agencies  that  investigate  discrimination 
complaints  filed  against  nursing  homes  that  do not  admit  persons  with the  human 
immunodeficiency  virus  (HIV)  or acquired  immune  deficiency  syndrome  (AIDS),  and 
(2) describes  the  number  and  outcomes  of complaint  investigations. 
BACKGROUND 
An estimated  1 million  Americans  are  infected  with the  HIV.l  While  it may take 
years  for the  effects  of the  HIV  to appear,  all those  infected  will eventually  develop 
AIDS.  Although  often  thought  of as a single disease,  AIDS  is a group  of specific 
clinical  conditions  indicative  of a severely  damaged  immune  system.  As of January  1, 
1993, the  Centers  for Disease  Control  (CDC)  expanded  the  official  definition  of AIDS 
to include  additional  conditions.  Under  the  new definition,  the  number  of Americans 
diagnosed  with AIDS  could  double.2 
Until  now, evidence  of nursing  home  admission  discrimination  against  persons  with 
AIDS  or HIV  has been  largely  anecdotal,  and  the  number  of complaints  filed 
nationwide  was unknown.  This is the  first national  study to document  the  volume  of 
filed  complaints  and  describe  their  outcomes.  It is also the  first national  study to 
examine  complaint  systems,  if any, at the  Federal,  State,  and  local  levels  of 
government. 
Growing Need for Long-Term  Care 
Studies  indicate  that  AIDS  is beginning  to take  on the  characteristics  of chronic 
illnesses.  This  change  is associated  with therapeutic  advances  capable  of lengthening 
and  improving  the  quality  of lives of persons  infected  with the  virus.  As the  shift 
toward  long-term  illness becomes  greater,  the  need  for skilled  nursing  and  long-term 
care  becomes  more  urgent.3 
NunwngHome Admkrion  Discrimination Against Pemons with HIV or AIDS 
Studies  also indicate  it is difficult  to place  someone  with HIV  infection  or AIDS  in a

nursing  home.4  Some  attribute  this difficulty to discrimination.  As the  number  of

HIV/AIDS  cases  grows, particularly  among  the  poor,  there  is increasing  concern  about

discrimination  by nursing  homes  in the  Medicaid  program.  The  Health  Care

Financing  Administrations  (HCFA)  Office  of Medicaid  Management  has  advised  its

regional  staff that  discrimination  is thought  to be  a primary  reason  for the  difficulty

HIV/AIDS  patients  have  in gaining  access  to medical  services,  especially  nursing  home
 admission.5  Acting  on this concern,  the  Medicaid  Bureau  included  an element  on 
discrimination  by nursing  homes  in its 1992 program  review  for its HIV/AIDS 
initiative.G 
Patients  with AIDS  or HIV-related  illnesses  may remain  in hospitals  longer  than 
necessary  if discharge  planners  cannot  find nursing  homes  that  will admit  them.  When 
this occurs,  patients  and  their  insurers  pay for a higher  level of care  than  is necessary, 
and  AIDS  patients  in hospitals  are  at risk of developing  more  infections. 
Laws l+otecting the Handicapped  Cover Perxons with HIV or AIDS 
Federally  funded  nursing  homes  that  discriminate  against  persons  with HIV  or AIDS 
violate  Federal  law.  Under  Section  504 of the  Rehabilitation  Act  of 1973, as set forth 
in 45 CFR  Part  84, handicapped  individuals  are  protected  from  discrimination.  This 
law has been  interpreted  to cover  persons  with  contagious  diseases,  including  HIV  and 
AIDS.7  In addition,  nursing  home  regulations  at 42 CFR  Part  442.12 (d)  (2) state 
that  nursing  homes  may not  receive  Medicare  and  Medicaid  funding  even though 
certified  by the  State  survey agency,  if the  facility fails to meet  the  civil rights 
requirements  set forth  in 45 CFR  Parts  80, 84, and  90.  Depending  on their  location, 
nursing  homes  that  discriminate  against  persons  with HIV  or AIDS  also violate  State 
and  local  laws.8 
METHODOLOGY 
We  collected  data  in three  phases,  each  corresponding  to the  Federal,  State,  or local

level of government.  Data  was collected  from  February  to August,  1992.  In each

phase,  we determined  which  public  agencies  would  investigate  nursing  home  admission

discrimination  complaints.  We  interviewed  each  investigating  agencys director,  or a

representative,  by telephone.  Some  agencies  were  prepared  to investigate  complaints

but  had  not  received  any.  We  collected  complaint  data  from  agencies  that  had

complaint  cases.  We  used  the  complaint  documents  to determine  who filed

complaints,  length  of investigation  periods,  and  case  outcomes.  We  also analyzed  anti-

discrimination  laws and  material  informing  the  public  about  the  agency  and  how to file

a complaint  with them.

At  the  local  level we went  a step  further,  conducting  interviews  and  analyzing  data

from  private  entities  that  provide  health  care  or social  services  to persons  with AIDS

or HIV  infection.

Phase One - Federal Level 
Phase  one  focused  on the  Office  for Civil Rights  (OCR)  within  the  Department  of 
Health  and  Human  Services  (HHS).  We interviewed  all  10 regional  managers  and 
obtained  the  total  number  of complaints  received  through  1991 from  OCRs  national 
database.  We  then  reviewed  documents  for all cases  re~eived  in 1989 and  1990.  We 
chose  this period  because  it allowed  us to examine  2 full years  of resolved  complaint 
2  cases  for which  documents  would  still be  available  in OCR  regional  offices.  Cases 
prior  to  1989 might  not  have  been  available,  and  cases  after  1990 might  not  have  been 
resolved. 
Phase Two - State Level 
In phase  two, we contacted  agencies  in all States  and  the  District  of Columbia 
(hereafter  referred  to  as a State)  to determine  if they would  investigate  nursing  home 
discrimination  complaints.  Agencies  were  initially  identified  by OCR  respondents.  If 
the  agency  identified  by OCR  would  not  investigate  the  complaints,  we asked  for the 
responsible  agencies.  With  each  State  agency  contact,  we asked  if there  were  any 
other  agencies  in their  State  which would  investigate.  We did not  interview  agency 
directors  if the  agency  would  not  investigate  complaints  of nursing  home  admission 
discrimination. 
States  received  far fewer  complaints  than  OCR.  Therefore,  on the  State  level we 
collected  data  for  all years  from  1986 through  1991 and  from  four  complaints  received 
in early  1992.  (There  were  no complaints  filed prior  to  1986 at any level.) 
Phase Three - Local  Level 
In the  third  phase,  we collected  data  from  a total  of 10 metropolitan  areas.9  We 
drew  a sample  of cities from  CDCS report  of AIDS  cases  in 95 metropolitan  areas. 
The  sample  consisted  of areas  with a high incidence  of AIDS  and  areas  with a low 
incidence.  After  identifying  public  investigating  agencies  in the  sample  cities, we 
interviewed  an agency  representative  and  collected  whatever  complaint  data  was 
available. 
As previously  mentioned,  we also collected  data  from  private  entities  that  serve  the 
HIV/AIDS  population.  Forty-seven  respondents  were  selected  based  on their 
knowledge  in at least  two of the  following  areas:  (1) appropriateness  of nursing 
homes  for persons  with HIV  or AIDS,  (2) prevalence  of nursing  home  admission 
discrimination,  (3) complaint  process,  and  (4) cases  of filed  complaints.  The 
respondents  were  either  involved  in finding  nursing  home  care  or were  in a position 
where  they  might  provide  information  about  filing a discrimination  complaint.  We 
interviewed  the  respondents  and  collected  data  on (1) the  services  they  provide  to 
persons  with  HIV  or AIDS,  (2) the  complaint  system,  and  (3) complaints  they  filed  or 
were  aware  of.  Most  interviews  were  by phone.  We  conducted  on-site  interviews  in 
only one  of the  sample  cities. 
This  study was conducted  in accordance  with the  Quality Standards for Inspections 
issued  by the  Presidents  Council  on Integrity  and  Efficiency. 
3
 SCOPE 
This report  deals  only with discrimination  against  persons  with HIV  or AIDS  by 
nursing  homes  that  participate  in federally  funded  programs.  Whenever  we use the 
term  complaint,  we are  referring  to this specific  type  of discrimination  complaint. 
This  report  further  deals  only with complaints  that  were  filed with  a public 
investigating  agency.  Anecdotal  cases  of discrimination  in which  a complaint  was not 
filed were  not  included  in our  analysis. 
We  did not  attempt  to determine  the  amount  of actual  discrimination.  Although  we 
know  how many  complaints  were  filed,  there  is no comparative  data  on the  number  of 
HIV-infected  persons  who needed  nursing  home  care  or the  number  who  applied  for 
such  care. 
State  agencies  sent  us complaint  data  in different  formats  and  levels of detail.  As a 
result,  our  analysis  of some  cases was based  on several  data  sources.  For  example,  if 
case  information  was incomplete,  we may have  used  data  from  the  interview  or other 
materials  the  respondent  sent  us. 
In one  State,  a complainant  filed  162 complaints.  This  high number  of complaints  by 
one  complainant  skews the  aggregate  data  on State  complaints.  Therefore,  in our 
findings  we note  if we are  including  or excluding  this mass filing. 
4
 FINDINGS

COMPLAINTS  CAN  BE INVESTIGATED  AT THE  FEDER&  STATE, AND 
LOCAL  LEVELS. 
WithinHHS, the OjJicefor  ~vilRights (OCR)  investigatescomplaints 
Regional  OCR  staff have  investigated  complaints  since  1987 (see  Appendix  A for a list 
of OCR  regional  offices).  Section  504 of the  Rehabilitation  Act  of 1973 grants  OCR 
legal  authority  to handle  these  cases.  In  1992, OCR  was given added  responsibility 
under  Title  II of the  Americans  with Disabilities  Act  of 1990.  The  OCR  now also 
investigates  complaints  against  State  and  municipal  nursing  homes  that  do not  receive 
Federal  funds. 
The  OCR  has  a national  database  which  collects  and  tracks  complaint  information 
from  each  of the  10 regional  offices.  Through  the  database,  one  can identify 
complaints  related  specifically  to HIV/AIDS,  nursing  homes,  admissions,  and  Section 
504 of the  Rehabilitation  Act.  The  OCR  classifies  nursing  home  complaints  under  the 
broader  category  of public  accommodations. 
The  normal  investigation  period  for OCR  cases begins  with receipt  of the  complaint. 
It ends  when  the  nursing  home  is found  in compliance  or when  an  agreement 
addressing  deficiencies  is signed.  The  time  a nursing  home  is given to submit  proof 
that  all deficiencies  have  been  corrected  is called  the  monitoring  period. 
In  1987, OCR  made  complaints  related  to AIDS  its highest  priority.  The  agency 
instituted  an expedited  process  for these  cases  that  was not  to exceed  3 months.l 
As we were  drafting  this report,  OCR  advised  us they  intend  to replace  this policy. 
The  proposed  new policy would  not  be  focused  on AIDS-related  complaints,  Instead, 
any complaint  involving  a life-threatening  or health-endangering  situation  would  be 
resolved  within  80 days. 
Complaint  investigations  result  in a letter  of findings  to the  nursing  home  and 
complainant.  The  letter  indicates  whether  the  nursing  home  is in compliance  with 
Federal  laws and  regulations.  If a nursing  home  is not  in compliance,  a plan  is drawn 
up specifying  the  corrective  actions  to be taken  as well as the  time  period  in which  the 
corrections  must  be  made.  If a nursing  home  refuses  to correct  violations,  OCR  can 
take  steps  to cut  off its Federal  funds. 
Prior  to  1991, some  cases  could  be  resolved  informally,  before  issuance  of a letter  of 
findings.  Nursing  homes  could  take  corrective  actions  and  come  into  compliance  or 
sign a voluntary  compliance  agreement  specifying  how and  when  they would  achieve 
compliance.  While  both  these  resolutions  required  corrective  actions,  the  nursing 
home  was not  cited  for violations.  The  OCR  discontinued  these  types  of resolutions  in 
June  1991. 
5
 Under certain conditions, other Federal ag~es  investigate. 
Two other  Federal  agencies  have  authority  to investigate  complaints.  One  is the 
Department  of Housing  and  Urban  Development  (HUD).  Under  the  Fair  Housing 
Amendments  of 1988, HUD  may investigate  nursing  homes  which  are  considered 
residences.  The  HUD  would  not  be  involved  with other  types  of nursing  homes,  e.g., 
facilities  providing  temporary  skilled  nursing  care.  The  HUDs  national  database 
includes  Fair  Housing  complaints.  However,  it cannot  identify  complaints  associated 
with HIV  or nursing  home  admission.  Therefore,  we confined  our  Federal  level 
inspection  to OCR. 
In our  State  level  inspection,  we found  HUD  has work-sharing  agreements  with at 
least  one  agency  in three  different  States.  In one  of these  States,  HUD  and  the  State 
agency jointly  investigated  four  cases.11 
The  other  agency  with  authority  to investigate  complaints  is the  Department  of Justice. 
As noted  above,  Title  II of the  Americans  with Disabilities  Act  (ADA)  covers  State 
and  municipal  nursing  homes.  The  Justice  Department  designated  OCR  as the  lead 
investigative  agency  for Title  II but  will be  responsible  for any judicial  enforcement 
that  may be  necessary  to enforce  a compliance  agreement  OCR  obtains.  Title  III of 
the  ADA  covers  privately  owned  facilities  that  offer  health  care  or social  services, 
regardless  of whether  they  receive  Federal  funds.  Generally,  the  Justice  Department 
is responsible  for investigating  private  facilities  under  Title  III.  Where  there  is 
overlapping  jurisdiction,  Justice  and  OCR  will coordinate  their  investigative  activities 
on a case-by-case  basis. 
Most States have at least one investigatingageruy.  Howeve6  it is not always clear which 
~pe  of agency investigates complaimk 
Seventy-two  agencies  in 46 States  investigate  complaints  (see  Appendix  B).  Twenty-
seven  States  have  one  agency  and  19 States  have  more  than  one.  Five States  do not 
have  an agency  to investigate  these  complaints.12  Contacts  in these  five States  said 
they would  refer  complaints  to HCFA  or OCR. 
While  most  investigating  agencies  (58 of 72) are  of two types,  overall  six types  were 
identified.  There  were  36 civil rights  or human  rights  agencies  and  22 agencies  that 
license  nursing  homes  and  certify  them  for participation  in the  Medicare  and  Medicaid 
programs.  These  types  of agencies  received  most  of the  complaints  we discuss later  in 
this report. 
The  other  types  of agencies  include  eight  Long-Term  Care  Ombudsmen,  four 
Medicaid,  one  Protection  and  Advocacy  for the  Disabled,  and  one  Health 
Departments  Division  of Disease  Control.  Of this group  of agencies,  two ombudsmen 
received  at least  one  filed  complaint.  While  ombudsmen  ordinarily  serve  as advocates 
for elderly  nursing  home  residents,  we were  referred  to eight  who said they  felt 
responsible  for any type  of complaint  against  a nursing  home. 
6
 State  agencies  investigate  complaints  under  the  authority  of Federal  laws, State  laws, 
or a combination.  Human  rights  agencies  usually  investigate  under  State  anti-
discrimination  laws and/or  Section  504 of the  Federal  Rehabilitation  Act, while 
licensing  agencies  investigate  under  Federal  and  State  nursing  home  regulations. 
Complaint  classification  systems varied  by type  of agency  and  the  legal  authority  to 
investigate.  Civil rights  and  human  rights  agencies  classified  complaints  as public 
accommodations  cases.  Licensing  agencies  generally  classified  them  as residents  rights 
cases.  Overall,  State  databases  and  tracking  systems  were  not  as specific  as OCRS. 
State  complaints  were  generally  identified  by searching  paper  logs or case  folders. 
When  State  complaint  investigations  uncover  deficiencies,  they  are  resolved  through 
corrective  actions  and/or  settlement  agreements.  Procedures  and  names  of 
agreements  vary by agency  type.  Most  human  rights  agency  complaints  were  resolved 
through  pre-determination  agreements.  These  are  essentially  the  same  as the 
voluntary  compliance  agreements  OCR  used  before  1991.  Licensing  agencies  resolve 
complaints  through  a plan  of correction.  Ombudsmen  do not  have  enforcement 
powers.  They  try to reach  settlements  informally  by mediating  with involved  parties. 
If a resolution  cannot  be  reached,  the  case  is referred  to another  agency. 
We found finv investigatingagencies at the local level. 
We  identified  one  public  investigating  agency  in each  of four  cities  (see  Appendix  C). 
One  agency  was a city attorneys  office,  and  the  others  were  human  rights  agencies. 
These  four  agencies  investigated  complaints  under  local  anti-discrimination  laws.  Two 
had  limited  jurisdiction  that  did not  include  federally  funded  nursing  homes. 
Respondents  from  both  of these  agencies  said any complaints  against  a federally 
funded  nursing  home  would  be  referred  to OCR. 
Complaints  against  nursing  homes  would  be classified  as public  accommodations  cases 
in these  agencies.  This  classification  was used  in human  rights  and  civil rights  agencies 
at all government  levels. 
WE FOUND  615COMPLAINTS  FILED  AGAINST  NURSING  HOMES  FROM 
1986THROUGH  1991. 
More than hay  the complaints were handled at the Federal level 
Of the  615 complaints  filed,  OCR  received  363 complaints  in 6 years  while  States 
received  251.  The  number  of State  complaints  includes  one  States  162-case  mass 
filing.  We  found  only one  complaint  filed with a local  public  agency.  Table  1 on the 
next  page  shows the  number  of complaints  agencies  received  each  year. 
7
 Table 1. 
COMPLAINTS FILED ANNUALLY 
FEDERAL  STATE  LOCALJ  TOTALS 
J 
1986 0  1 0  1 
1987 53  17  0  70 
1988  92  22  1  115 
1989 64  1  0  65 
1990  94  10  0  104 
1991  60  2od  o  260 
TOTAM  363  251  1  615 
1 Based on a review of 10 metropolitan  areas. 
2 Number includes four 1992 cases, seven inaccessible cases, and the 162-case mass filing. 
According  to OCRs  national  database,  complaints  regarding  nursing  home  admission 
discrimination  represent  41 percent  of all AIDS-related  complaints  and  94 percent  of 
all AIDS-related  nursing  home  complaints  received  from  1987 through  1991.  We  do 
not  know what  percentage  of AIDS-related  complaints  involved  nursing  homes  or 
admission  discrimination  at the  State  and  local  levels. 
Table  2 shows the  complaint  cases we reviewed  and  the  year  they were  filed.  We 
reviewed  401 cases  representing  nearly  two-thirds  (65 percent)  of the  615 filed.  Of the 
cases  reviewed,  156 were  received  by OCR  in 1989 and  1990.  Files  for two other 
Federal  complaints  received  during  this period  could  not  be located.  At the  State 
level, we reviewed  244 cases  filed with  15 agencies  from  1986 through  1991.  (This 
includes  four  complaints  filed  in early  1992.)  At least  seven  other  complaints  were 
filed at the  State  level, but  the  cases  were  either  pending  or could  not  be  accessed. 
Table 2 
COh4PLAlNT CASES REVIEWED 
FEDERAL CASES  STATE  LOCAL  TOTALS 
Two Years  CASES  CASES 
Au Years  Alf Years 
1986  1  1 
1987  17  17 
1988  22  1  23 
1989  63  1  64 
1990  93  10  103 
1991  1931  193 
TOTALS  156  244  1  dm 
1 Number excludes seven inaccessible cases. 
8
 Asshown  below,  the244State  cases were  handled  bythree  ~pes  of agencies.  While 
we identified  a total  of 72 State  agencies  that  investigate  discrimination  complaints 
against  nursing  homes,  only 15 agencies  were  associated  with the  244 cases. 
TYPE OF
 NUMBER OF AGENCIES  TOTAL NUMBER

INVESTIGATING AGENCY
 WITH CASES  OF CASES

Civil/HumanRights
 9  217

License and Certification
 4  24

Long-Term Care Ombudsmen
 2  3

TOTALS
 15  244

lkere  were far fewer comphinanfi  than complaint numbem su~est. 
Complaints  often  represent  one  individual  who alleges  discrimination  by a number  of

nursing  homes.  The  401 cases we reviewed  were  filed by 65 complainants.  Table  3

below  shows the  types  of complainants  and  how many  of each  type  filed  cases  at the

Federal  and  State  levels.  Some  complainant  types  were  individuals  such as the

patients  themselves,  relatives,  social workers,  and  physicians.  Others  were  groups  such

as hospitals,  advocacy  groups,  public  agencies,  and  nursing  homes.  A patient  filed the

one  local  complaint.  Local  information  is not  included  in Table  3.

While  few patients  were  complainants,  most  complainants  filed  cases  on behalf  of

patients  who were  denied  nursing  home  admission.  Only six complainants  filed  cases

which  did not  involve  an individual  patient.  These  complaints  were  test  cases.  They

were  investigated  to determine  nursing  home  access  for persons  with HIV/AIDS  as a

group  rather  than  for  a specific  patient.  The  test  cases were  filed by advocacy  groups

and  State  agencies.

Table 3. 
FEDERAL AND STATE COMPLAINANTS BY TYPE 
TYPE  FEDERAL  STATE  TOTAL8 
Hospital  8  7 15 
Relative/Friend  6  4 10 
State Ageney  3 6 9 
AdvoeaeyGroup  6 2 8 
Patient  1 5  6 
Anonymous  o	 6 6 
LegalAdvocate  3 0 3 
Federal Ageney  1  1 2 
SocialWorker  o 2 2 
Physician  o  1 1 
Local Agency  o  1 1 
NumingHome  1 0  1 
TOTALS  29  35  64 
9
 Respondents believe complaint numben  are low compared to actual discnrmnahon. 
Respondents  at each  government  level and  in local  private  agencies  generally  shared 
the  belief  that  the  number  of filed  complaints  does  not  reflect  the  prevalence  of 
nursing  home  discrimination  against  persons  with HIV  or AIDS.  The  number  of 
complaints  is much  lower  than  actual  cases  of discrimination,  they  said.  The  main 
reason  few complaints  are  filed  is that  people  do not  complain;  they just  stop  trying to 
place  patients  in nursing  homes  which have  denied  admission  to persons  with HIV  or 
AIDS  in the  past. 
All 10 OCR  regional  managers  believe  the  number  of complaints  filed  is lower  than 
actual  instances  of discrimination.  A common  explanation  for low numbers  was that 
filing complaints  is not  a priority  for persons  in poor  health  or for hospital  discharge 
planners.  Other  reasons  noted  were  that  persons  with HIV/AIDS  handle  their  own 
situation  or seek  help  from  advocacy  groups,  lack of OCR  staff limits  outreach  activity, 
and  public  agencies  at every level  are  not willing to deal  with the  issue. 
Over  half  of State  agency  respondents  (37 of 69) also thought  there  was more 
discrimination  than  complaint  numbers  indicated.  They  said people  tend  not  to 
complain  for the  following  reasons:  they  do not  know their  rights,  they  do not  know 
whom  to call, they  are  too  sick to think  about  it, they  are  afraid,  the  process  takes  too 
long, and  discrimination  is hard  to prove. 
In contrast,  over  a quarter  of State  respondents  (20 of 69) said the  number  of 
complaints  did reflect  the  level  of discrimination.  Eight  of these  respondents  said this 
kind  of discrimination  was not  a problem.  Five  said nursing  homes  admit  persons  with 
AIDS.  The  remaining  seven  said other  care  was available  or the  State  had  a low 
incidence  of AIDS. 
Local  government  respondents  offered  two reasons  why complaint  numbers  are  low 
compared  to actual  discrimination.  One  is that  hospital  social workers,  who are  in the 
best  position  to file complaints,  do not  want  to jeopardize  their  working  relationship 
with nursing  homes.  Another  reason  is that  advocacy  groups  step  in and  resolve 
problems  with nursing  homes  informally.  The  threat  of a law suit by an advocacy 
group  can make  a nursing  home  change  its policy. 
Most  local  private  agency  respondents  (40 of 47) said the  number  of complaints  did 
not  reflect  the  level of actual  discrimination.  These  respondents  provide  health  care 
or social  services  to persons  with AIDS  or HIV.  Reasons  complaints  are  few include: 
people  choose  not  to complain,  people  do not  know how or where  to file, people  do 
not  know  they  have  the  right  to complain,  the  process  is too  cumbersome,  and  patients 
do not  have  the  energy  or resources.  Only two of these  respondents  filed  complaints.  OVER  HALF  THE  CASES REVIEWED  INVOLVED  CORRECIIVE  ACIIONS.

Sixty-two percent  of Federal and State outcom~  inchded  corrective actions. 
Nursing  homes  were  required  to take  different  corrective  actions.  Table  5 shows that 
corrective  actions  were  required  in the  majority  of Federal  and  State  outcomes. 
Typical  corrective  actions  include:  adopting  and  publicizing  a non-discriminatory 
admission  policy, notifying  referral  sources  of non-discriminatory  policy, instituting 
universal  precautions,  training  staff, maintaining  a record  of all persons  who apply  for 
admission  along  with reasons  why any are  not  admitted,  discontinuing  contractual 
relationships  with referral  sources  that  discriminate,  and  modifying  grievance 
procedures. 
Fewer  than  20 percent  (67 of 400) of the  cases  reviewed  found  nursing  homes  in 
compliance.  By this we mean  discrimination  was not  substantiated.  In over  half  the 
Federal  and  State  cases  (23 1 of 400), agencies  negotiated  settlements  wherein  the 
nursing  home  agreed  to take  corrective  action  and  a violation  was not  cited.  The  one 
local  case was filed in court  after  the  agency  found  probable  cause  of discrimination. 
Table 5. 
CORRECTIVE ACTIONS COMPARED TO OTHER OUTCOMES1 
TYPE  FEDERAL  STATE  TOTALS 
Corrective Action./WolationCited  9  9  18 
~  Aetim/Wolation Not Cited  95  136  231 
subtotals  104  145 
(67%)  (59%)  (6:;) 
Nursing Home In Compliance
 34  33  67 
AdministrativeClosure
 3  56  59 
Referred to Other Ageney
 o  1  1 
Wltlldrawn
 1 3  4 
Pending
 14 2  16 
Data Not Available
 o  4 4 
Subtotals
 52  151 
(33%]  (4?%)  (%%] 
TOTALS
 156  244  44m 
(100%)  {100%)  (100%) 
1 Outcomes  for Federal  and  State  cases  reviewed. 
Agreements  resolving  a case  often  specify a timeframe  during  which  the  nursing  home 
provides  evidence  that  corrective  actions  have  been  taken.  This  timeframe  is called 
the  monitoring  period.  The  length  of monitoring  periods  in 62 OCR  cases  ranged 
from  1 month  to 2 years  with an  average  of 8.4 months.  On the  State  level, 
11
 monitoring  in 26 cases  (excludes  the  mass  filing) lasted  an average  of 22 months;  some 
took  3 years.  When  the  162-case  mass  filing is included,  the  average  monitoring 
period  for  139 cases was  16 months. 
Few patients gained admission. 
In the  cases  reviewed,  62 patients  needed  placement  in nursing  homes.  As of the  time 
the  cases were  closed,  only 12 patients  were  admitted.  Six of the  12 went  to nursing 
homes  involved  in the  complaint  cases  and  6 went  to other  nursing  homes.  The  case 
documents  revealed  that  another  14 patients  died,  5 went  to other  care  settings,  2 
withdrew  their  cases,  1 remained  in the  hospital,  1 declined  the  nursing  homes  offer 
to be  admitted,  1 was asked  to reapply  for admission,  and  1 was in the  wrong 
jurisdiction.  The  case  documents  we reviewed  did not  indicate  what  happened  to the 
remaining  25 patients. 
As mentioned  earlier,  test  cases  are  filed  to determine  nursing  home  access  for 
persons  with HIV  or AIDS  as a special  population  and  not  on behalf  of an individual 
patient.  Over  half  the  cases  reviewed,  including  the  162-case  mass filing, fit this 
catego~.  Therefore,  none  of these  could  result  in an admission. 
Fines or monetary penaltitx  were rare. 
Agencies  rarely  proposed  that  nursing  homes  pay money  in connection  with 
substantiated  complaints.  A civil rights  agency  in one  State  imposed  a fine  against  one 
nursing  home.  In another  State,  a licensing  agency  proposed  monetary  penalties  from 
$250 to $3,000 for four  nursing  homes.  At the  Federal  level, the  OCR  does  not  have 
authority  to  assess monetary  fines  or penalties. 
i%e majority of compiizints took  over 6 months to resolve. 
Two-thirds  of the  cases  reporting  length  of investigation  period  (256 of 377 cases)  took 
more  than  6 months.  The  investigation  period  was from  the  date  the  complaint  was 
filed to the  date  findings  were  issued  or a settlement  agreement  was signed.  This  does 
not  include  time  spent  monitoring  the  nursing  home. 
While  OCRs  policy, as mentioned  earlier,  is to resolve  AIDS-related  cases within  3 
months,  the  average  length  of investigation  period  for  142 cases  we reviewed  was 6.6 
months.  Of the  142 cases,  only 18 percent  (25) were  resolved  within  the  required 
timeframe.  (The  length  of the  investigation  period  was not  available  for  14 cases.)  At 
the  State  level,  complaint  resolution  took  an average  of 12 months.  Excluding  the 
162-case  mass  filing, the  average  was 7.4 months. 
12
 THE  OVERALL  COMPLAINT  SYSTEM  IS DIFFICULT  TO USE. 
Investigating agencies cannot be identi&d  ea.wly. 
Public  and  private  agency  respondents  had  difficulty identifying  investigating  agencies. 
As mentioned  earlier,  the  number  and  type  of State  agencies  which investigate 
complaints  are  not  consistent  from  State  to State.  This  can  be confusing  to potential 
complainants.  Some  State  agency  respondents  did not  know  of other  agencies  in their 
own State  which  investigate  complaints. 
Many  State  agency  respondents  also did not  identify  OCR  as a Federal  agency  where 
individuals  could  file a complaint.  This  is a problem  for complainants  who may call a 
State  agency  and  be  told  there  is no other  public  investigating  agency.  The 
complainant  would  then  believe  nothing  more  could  be  done  and  the  Federal 
government  is not  involved. 
On  the  Federal  level, OCR  regional  offices  seemed  well aware  of State  and  local 
human  rights  agencies,  but  not  as aware  of other  types  of agencies.  Nearly  half  (33 of 
72)	 the  State  investigating  agencies  we interviewed  were  not  identified  by OCR.  If 
complainants  call OCR,  however,  their  cases will be  accepted  and  they will not  have  to 
call another  agency.  On  the  other  hand,  complainants  might  be  interested  in filing 
simultaneous  cases  with other  agencies  if they knew  of that  option. 
Local  private  agency  respondents  said people  do not  know where  or how to file a 
complaint  or even  that  they  have  a right  to complain.  Only  12 of 47 respondents 
could  identify  an investigating  agency.  Six named  State  agencies  and  six said they 
would  call OCR.  Five of the  six respondents  identi~ing  OCR  had  been  at AIDS 
seminars  where  OCR  representatives  explained  the  law, described  the  complaint 
process,  and  distributed  complaint  forms.  The  sixth respondent,  a physician,  learned 
of OCR  from  a State  agency  manager. 
I%blic information does not spec~cally  address nursing home  diwimination  agaimu 
persons with AIDS  or HW  infection. 
Agencies  have  not  been  very effective  in letting  the  public  know they  handle  these 
types  of complaints.  When  available,  public  information  is in the  form  of posters, 
pamphlets,  and  fact  sheets,  Printed  material  is usually  distributed  to other  public 
agencies,  nursing  homes,  and  HIV/AIDS  service  providers.  From  the  perspective  of 
local  private  agency  respondents,  the  information  is not  reaching  enough  patients  or 
the  professionals  who help  them. 
The  OCR  regional  managers  said they  distribute  information  to public  and  private 
agencies,  speak  before  various  groups,  and work with nursing  home  associations  and 
HIV/AIDS  organizations.  The  two most  frequently  mentioned  activities  were 
distributing  information  at workshops  (6) and working  with nursing  home  associations 
(5).  Some  of OCRs  printed  material  explains  Federal  law, who is covered  and  under  what  circumstances,  and  whom  to call for help.  Resources,  however,  vary from  region 
to region,  and we did not  determine  if the  same  material  is distributed  by every 
regional  office. 
Public  information  at  the  State  level varies  by agency  type.  State  licensing  agencies 
and  ombudsmen  usually  send  posters  or notices  about  residents  rights  to nursing 
homes.  These  would  not  be  seen  by someone  requesting  admission,  and  rarely  do the 
materials  mention  admission  policy, HIV,  or AIDS.  Civil rights  and  human  rights 
agencies  try to send  information  to HIV/AIDS  service  providers  but  can  only do so 
when  their  budgets  permit.  In addition,  most  of their  material  is written  in agency 
jargon.  For  example,  a pamphlet  might  read,  It is unlawful  to discriminate  in public 
accommodations  against  persons  who  are  handicapped  or disabled.  The  public  would 
not  know that  a nursing  home  is a public  accommodation  and  that  the  handicapped 
include  persons  with HIV-related  conditions. 
Some  respondents  from  State  agencies  and  local  private  agencies  suggested  that 
complaint  cases  be publicized  to increase  general  awareness  about  this kind  of 
discrimination. 
l%ose k  a position to jile complaints are reluctant to do so. 
Respondents  at each  government  level and  in private  agencies  gave similar  reasons 
why complaint  cases  are  not  more  numerous.  The  reason  cited  most  often  is that 
those  who make  nursing  home  placements  rarely  complain.  For  example,  if hospital 
discharge  planners  learn  that  certain  nursing  homes  will not  take  persons  with HIV-
related  illnesses,  those  homes  will not be  called  for  such patients  again.  The  issue 
ends  there.  A  1989 survey of hospital  social workers  in one  State  confirmed  this 
phenomenon.13 
Some  State  and  private  local  agency  respondents  said hospital  social workers  do not 
want  to risk alienating  nursing  homes  by filing complaints.  Also, complaints  are  not 
filed  because  social workers  are  not  in a position  to determine  whether  the  nursing 
homes  reason  for refusing  the  patient  is true.  Among  the  complaints  we reviewed, 
only two were  filed by social workers. 
Although  two-thirds  of local private  agency  respondents  (32 of 47) said they  have  had 
difficulty  placing  AIDS  patients  in nursing  homes,  only two respondents  had  filed 
complaints.  One  respondent  was a physician  and  the  other  was a nursing  home 
discharge  planner. 
Few patients  file complaints.  State  and  Federal  respondents  cited  the  extent  of 
patients  illness as a primary  reason  for this.  Another  reason  is patients  do not  want 
to make  their  condition  public. 
Respondents  at  each  level  said the  complaint  process  discouraged  people  from  filing. 
One  respondent  said, Filing a complaint  is a lot of work  and  effort,  and  many  felt  that  neither  patients  nor  social workers  are  able  to make  filing complaints  a priority. 
Respondents  suggested  that  instead  of entering  the  complaint  system,  placement  staff 
look  for another  nursing  home  or another  type  of care,  discharge  the  patient,  or leave 
the  patient  in the  hospital. 
15
 RECOMMENDATIONS 
THE  OCR  SHOULD  LEAD  A DEPARTMENTAL  INITIATIVE  TO IMPROVE 
PUBLIC  INFORMATION. 
The  OCR  has national  expertise  in the  area  of nursing  home  admissions  discrimination

against  persons  with HIV  or AIDS.  It is in the  best  position  to spearhead  an

information  campaign  with the  participation  of other  agencies  in the  Department.

The  other  agencies  are  the  Public  Health  Service  (PHS),  the  Health  Care  Financing

Administration  (HCFA),  and  the  Administration  on Aging (AoA).  The  initiative

should  target  public  information  to the  following  audiences:  State  and  local

governments,  hospitals,  HIV/AIDS  clinics, health  facility discharge  planners,  medical

societies,  professional  associations,  and  HIV/AIDS  social  service  and  advocacy

organizations.

Public  information  should  specifically  address  two areas.  The  first is that  HIV

infection  is considered  a protected  handicap  under  Federal  law.  All persons  who meet

legal  requirements  for  a qualified  individual  with handicaps  are  protected  from

discrimination  by nursing  homes.  The  second  is which public  agencies  at  each

government  level investigate  complaints  of such discrimination.  People  need  to know

their  rights  and  where  they  can file a complaint.

THE  OCR  SHOULD  OFFER  TECHNICAL  ASSISTANCE  TO STATE  AND 
LOCAL  GOVERNMENTS. 
The  OCR  has the  knowledge  and  experience  that  could  benefit  State  and  local 
governments.  The  OCR  has handled  more  complaints  of nursing  home  admission 
discrimination  against  persons  with HIV/AIDS  than  any other  agency.  It has  a 
national  database  that  specifically  identifies  and  tracks  these  complaints.  It also has 
Fact  Sheets  and  other  printed  information  that  specifically  address  this type  of 
discrimination.  Therefore,  OCR  should  offer  technical  assistance  in these  areas. 
THE  OCR  SHOULD  MEET  ITS 3-MONTH  TIMEFRAME  FOR AIDS-RELATED 
com~. 
In  1987, OCR  recognized  the  need  to expedite  AIDS-related  cases  and  established  a 
3-month  timeframe  for them.  On  average,  however,  the  1989 and  1990 cases we 
reviewed  took  over  6 months  to resolve.  Recently,  OCR  has considered  replacing  the 
1987 policy with one  that  gives priority  to complaints  involving health-endangering 
situations,  regardless  of HIV.  Until  such  time  as the  1987 policy is officially replaced, 
we recommend  that  OCR  meet  its 3-month  timeframe  for AIDS-related  complaints.  We  received  comments  on the  draft  of this report  from:  the  OCR,  the  PHS,  the

HCF~  and  the  AoA.  All commented  favorably  on working  together  on a

Department  initiative  to provide  the  public  with information.  None  disagreed  with the

desirability  of sharing  expertise  and  resolving  cases  faster.  But  an overriding  concern

was how to comply with  our  recommendations  with limited  resources.

We believe  the  agencies  involved  in the  initiative  (OCR,  PHS,  HCF~  and  AoA)  could

assist each  other  in developing  creative  ways to address  this concern  since  the  need  for

nursing  home  care  for persons  with AIDS  is likely to increase.

The  OCR  advised  us they  are  considering  a new policy which will require  that

complaints  involving health-endangering  situations  be given priority  over  other

complaints.  The  proposed  policy would  replace  the  1987 requirement  to resolve

AIDS-related  cases within  3 months.  We  continue  to recommend  that  OCR  meet  the

3-month  timeframe  on AIDS  cases  unti] such time  as the  policy is officially replaced.

Regarding  the  agencies  general  and  technical  suggestions,  we adopted  several  which

made  the  narrative  clearer  but  did not  alter  our  meaning  or require  additional  data

collection.

The  full texts  of agency  comments  are  in Appendix  D.

17
 ENDNOTES

1.	 Centers  for Disease  Control,  HIV Prevalence  Estimates  and  AIDS  Case 
Projections  for the  United  States:  Report  Based  on a Workshop,  MwbidiY 
andk(ortality  Weekly Repori, vol. 39, No. RR-16,  p.  1 (Atlanta:  CDC, 
November  1990). 
2.	 Dear  Colleague  letter  from  James  W. Curran,  M.D., M.P.H., Assistant  Surgeon 
General,  October  1992. 
Faulkner  and  Gray,  CDC Proposes  Expanded  AIDS  Definition,  Medicine  and 
Health,  vol. 45, no. 44, p. 2 (Washington,  DC:  Faulkner  and  Grays Healthcare 
Information  Center,  November  1991). 
3.  A. E. Benjamin,  Chronic  Care:  Perspectives  on AIDS  and  Aging, Generations, 
p.  19 (Fall,  1989). 
A. E. Benjamin  and  James  H. Swan, Nursing  Home  Care  for Persons  with 
HIV  Illnesses,  Generations,  p. 63 (Fall,  1989). 
Erwin  A. Carrier,  Ed.D.,  Jeanette  Bressler,  MSW,  and  Wendy  Blankfort-Doyle, 
MA,  AIDS and  the  Long-term  Care  System:  A Nursing  Home  Sumey, paper 
delivered  at the  Gerontological  Society  of Americas  40th Annual  Scientific 
Meeting  (Washington,  DC,  1987). 
General  Accounting  Office,  AIDS:  Delivering  and  Financing  Health  Services 
(Washington,  DC,  1989). 
J. David  Greenberg,  HIV as a Chronic  Disease:  Implications  for Health 
Services  and  Financing,  paper  delivered  at Decatur,  GA  (Baltimore:  Medicaid 
Bureau,  1991). 
G. Kirby Holland  and  Karen  Ohare  Conley,  Providing  Care  for Persons  with 
AIDS  in a Long-term  Care  (Nursing  Home)  Setting,  prepared  for  Illinois 
Department  of Public  Health  (Dixon,  IL  First  Health  Care,  Ltd.,  1988). 
Nathan  L. Linsk  and  Reggi  Marder,  Facing  Nursing  Home  Resistance  in 
Hospital  Discharge  Planning  for People  with HIV  Infection  (Chicago: 
University  of Illinois,  1989). 
Vincent  Mor,  Implications  of the  AIDS  Epidemic  for Long  Term  Care 
(Providence:  Brown  University,  1988). 
National  Center  for Social  Policy and  Practice,  Beyond  the  Hospital  Door: 
18
 Community  Resources  Available  for Persons  with HIV  Infection  or AIDS  in the 
United  States  (Chicago:  American  Hospital  Association,  1990). 
National  Commission  on AIDS,  Report  of the  Working  Group  on 
Social/Human  Issues  to the  National  Commission  on AIDS  (Washington,  DC, 
1987). 
4.  See  Carrier,  Bressler,  and  Blankfort-Doyle. 
See  General  Accounting  Office. 
Larry  Gostin,  Lane  Porter,  Hazel  Sandomire,  AIDS Litigation  Project:  A 
National  Survey  of Federal,  State,  and  Local  Cases  Before  Courts  and  Human 
Rights  Commissions,  (Washington,  DC:  Public  Health  Service,  1990). 
See  Greenberg. 
See  Holland  and  Conley. 
Nan  Hunter,  Epidemic  of Fear:  A Survey  of AIDS  Discrimination  in the 
1980s and  Policy Recommendations  for the  1990s  (New  York:  American  Civil 
Liberties  Union,  AIDS  Project,  1990). 
Intergovernmental  Health  Policy Project  (IHPP),  AlllS,  A Public Health 
Challenge,  vol.  1 (Washington,  DC:  The  George  Washington  University, 
October  1987). 
See  Linsk  and  Marder. 
See  Mor. 
See  National  Center  for Social  Policy and  Practice. 
See  National  Commission  on AIDS. 
Preinspection  interviews,  August-September  1991. 
Public  Health  Service,  Five State/Local  Approaches  for Preventing  and 
Resolving  HIV-Related  Discrimination,  2 vols. (Silver  Spring:  Birch  and  Davis 
Associates,  Inc.,  1988). 
State  of New York,  AIDS:  New Yorks Response  (Albany:  Department  of 
Health,  1989). 
5.	 Director,  Office  of Medicaid  Management,  BQC,  to all regional  administrators, 
et  al., 16 February  1990. 
19
 6.  Medicaid  Program  Review  Guide,  HIV/AIDS,  Fiscal  Year  1991-1992. 
7.  Wendy  E. Parmet,  AIDS and  the  Limits  of Discrimination  Law, Law, 
Medicine  and Health  Care, pp.  61-72 (Summer,  1987). 
8.  IHPP, A  Summary  of HW/AIDS  Laws from  the 1990 State Legisladve  Sessions 
(Washington,  DC, January  1991). 
9.  The  10 metropolitan  areas  were  Baltimore,  Baton  Rouge,  Kansas  City, Los 
Angeles,  Memphis,  Miami,  Newark,  New York,  San Francisco,  and  Tulsa. 
10.  Memorandum  and  expedited  procedures  from  OCR  Director  to OCR  Regional 
Managers,  October  29, 1987. 
11.  Agreements  were  between  HUD  and  the  Maine  Human  Rights  Commission, 
the  Minnesota  Department  of Human  Rights,  and  the  Wisconsin  Equal  Rights 
Division  of the  Department  of Industry,  Labor  and  Human  Relations.  The 
joint  investigations  were  conducted  in Maine.  Minnesotas  complaints  were  not 
associated  with the  Fair  Housing  Amendments,  and  Wisconsin  has  not  had  any 
complaints. 
12.  The  five States  are  Arizona,  Nebraska,  Nevada,  Utah,  and  Wyoming.  An 
Arizona  agency  did investigate  a complaint  in 1991, but  it will not  do so in the 
future. 
13.  See  Linsk  and  Marder, 
20  APPENDIX  A

COMPL41N13  WILL  BE INVESTIGATED

BY REGIONAL  OFFICES OF

THE  OFFICE FOR  CIVIL  RIGHTS

U.S. DEPARTMENT  OF HEALTH  AND  HUMAN  SERVICES

Region I encompassessixStates: (%mecticu~ Maine, MassachusettsN, ew 
Hampshire,Rhode Islan@ and Vermont. 
JFK  Federal  Building

Room  1875

Boston,  MA  02203

(617)  565-1340

Region II encompassestwo States,New York and New Jersey,as well as Puerto Rico 
and the Virgin Islands. 
26 Federal  Plaza

Suite  3312

New York,  NY  10278

(212)  264-3313

Region III encompassesthe Districtof Columbi~ and Delaware, Marykm@ 
Pennsylvani~VirginiZ and West Virginia. 
3535Market  St.

Room  6300

Philadelphia,  PA  19104

(215)  596-5381

Region IV encompasseseightStates: Alabam+  Florid% Georgi%  Kentucky, 
Mississippi,  North CarolinZ SouthCarolin~ andTennessee. 
101 Marietta  Tower 
Room  1504 
Atlanta,  GA  30323 
(404)  331-2779 
A-1
 Region V encompassessixStates: Illinois,Indian%Michigan,Minnesota,Ohio, and 
Wisconsin. 
105 West  Adams

16th Floor

Chicago,  IL  60603

(312)  886-2359

Region VI encompassesfive States: Arkansas,Louisian~ New Mexico, Oklahom% 
and  Texas. 
1200 Main  Tower 
Room  1360 
Dallas,  TX  75202 
(214)  767-4056 
Region VII encompassesfour States: IOWZKansas,Missouri,andNebraska. 
601 East  12th Street

Room  248

Kansas  City, MO  64106

(816)  426-7277

RegionVIII encompassessixStates: Colorado,Montarq  North Dako@  South 
Dakot~ Utah, and Wyoming. 
1961Stout  Street 
Room  840 
Denver,  CO  80296 
(303)  844-4774 
Region IX encompassesfour States: Arizorq  California Hawaii, and Nevada. 
50 United  Nations  Plaza 
San Francisco,  CA  94103 
(415) 556-8367 
Region X encompassesfour States: Alaskz Idaho, Oregoq  and Washington. 
2201 Sixth Avenue 
Mail  Stop  RX-1 1 
Seattle,  WA  98121 
(206)  553-0473 
A-2
 APPENDIX  B

STATE  PUBLIC  AGENCIES  THAT  WLLL INVESTIGATE  COMPLAINTS 
ALABAMA  CONNECTICUT

Department  of Human  Resources  Commission  on Human  Rights 
Office of Civil Rights  and  and Opportunities 
Equal  Employment  90 Washington  Street 
50 Ripley  Street  Hartford,  CT  06106 
Montgomery,  AL  36130-1801  (203) 566-3352 
(205) 242-1550 
Department  of Aging 
ALASKA  175 Main  Street 
Hartford,  CT  06106 
State  Commission  for  (203) 566-7770 
Human  Rights 
800 A Street  Office of Protection  and Advocacy 
Suite  202  for Persons  with  Disabilities 
Anchorage,  AK  95501  60-B Weston  Street 
(906) 276-7474  Hartford,  CT  06120 
(203) 297-4300 
ARKANSAS

DELAWARE

Department  of Human  Services

Office of Long  Term  Care
 State  of Delaware

Post  Office  BOX 8059
 Division  of Aging

Little  Rock,  AR  72203
 Millford  State  Service  Center

(501) 682-8487
 11/13 Church  Avenue

Millford,  DE  19963

CALIFORNIA
 (302) 422-1386

Department  of Health  Services
 Office of Health  Facility

Office of Civil Rights
 Licensing  and Certification 
714 P St., Room  1050
 3000 Newport  Gap  Pike 
Sacramento,  CA  95814
 Wilmington,  DE  19808 
(916) 657-1411
 (302) 995-6674 
COLORADO
 DISTRICI  OF  COLUMBIA 
State  of Colorado
 Department  of Consumer  and 
Civil Rights  Division
 Regulatory  Affairs 
1560 Broadway,  Suite  1050
 Health  Facilities  Division 
Denver,  CO  80202
 614 H Street,  Northwest 
(303) 894-2997
 Room  1014 
Washington,  DC  20001 
Department  of Health
 (202) 727-7201 
Health  Facilities  Division

4210 East  1lth  Avenue

Denver,  CO  80220-3716

(303) 692-2800

B-1
 District  of Columbia
 ILLINOIS 
Office of Human  Rights

and Minority  Business
 Department  of Human  Rights 
2000 14th Street,  Northwest
 623 Stratton  Building 
Washington,  DC  20009
 Springfield,  IL  62706 
(202) 939-8740
 (217) 785-5119 
FLORIDA
 INDIANA 
Department  of Health  and
 Civil Rights  Commission

Rehabilitative  Services
 32 East  Washington  Street

Office of Civil Rights
 Suite  90

1317 Winewood  Boulevard
 Indianapolis,  IN  46204

Building  3, Room  203
 (317) 232-2600

Tallahassee,  FL  32399

(904) 487-1901
 IOWA

Department  of Health  and
 Civil Rights  Commission

Rehabilitative  Services
 Grimes  State  Office

Office of Licensure  and Certification
 507 10th Street

2727 Mahon  Drive
 Des Moines,  IA  50319

Tallahassee,  FL  32308
 (515) 281-4121

(904) 487-2527

Department  of Inspection

Long-Term  Care  Ombudsman  Council
 and Appeals

1320 South  Dixie Highway
 Health  Facilities  Division

3rd Floor
 Lucas Office Building

Coral  Gables,  FL  33146
 2nd Floor

(305) 663-2085
 Des Moines,  IA  50319

(515) 281-4233/4125

GEORGIA

KANSAS

Department  of Human  Resources

Office of Regulato~  Services
 Human  Rights  Commission

878 Peachtree  Street,  NE
 Landon  State  Office Building

Atlanta,  GA  30309
 Suite  851S

(404) 894-5137
 900 South  West Jackson

Topeka,  KS  66612-1258

HAWAII
 (913) 296-3206

Department  of Health
 KENTUCKY

Hospital  and Medical  Facilities  Branch

1270 Queen  Emma  Street
 Commission  on Human  Rights

Honolulu,  HI  96813
 701 West Mohammed  Ali Boulevard

(808) 586-4077
 Post  Office Box 69

Louisville,  KY  40201-0069

IDAHO
 (502) 588-4024

Department  of Health  and Welfare
 Office of Inspector  General

Bureau  of Facility  Standards
 Division  of Licensing  and Regulations

450 West State  Street
 CHR  Building,  4th Floor  E

Boise, ID  83720-5450
 275 East  Main Street

(208) 334-6626
 Frankfort,  KY  40621-0001

(502) 564-2800

B-2  LOUISIANA
 MISSISSIPPI

Department  of Social Services
 Division  of Medicaid

Civil Rights  Bureau
 Office of Long-Term  Care

546 Main  Street
 Robert  E. Lee Building,  Suite  801

Baton  Rouge,  LA  70801
 239 North  Lamar  Street

(504) 342-2700
 Jackson,  MS  39201-1399

(601) 359-6050

MISSOURI

Human  Rights  Commission

State  House,  Station  51
 Commission  on Human  Rights

Augusta,  ME  04333
 Post  Office Box 1129

(207) 289-2326
 Jefferson  City, MO  65102-1129

(314) 751-3325

MARYLAND

MONTANA

Commission  on Human  Relations

20 East  Franklin  Street
 Human  Rights  Commission

Baltimore,  MD  21202-2274
 1236 6th Avenue

(410) 333-1717
 Post  Office Box 1728

Helena,  MT  59624-1728

MASSACHUSETTS
 (406) 442-5506

Commission  Against  Discrimination
 NEW  HAMPSHIRE

1 Ashburton  Place

Room  1305
 Department  of Health  and 
Boston,  MA  02109
 Human  Services 
(617) 727-3990  Ext. 211
 Bureau  of Health  Facilities 
Administration 
MICHIGAN
 6 Hazen  Drive 
Concord,  NH  03301-6527 
Department  of Civil Rights
 (603) 271-4471 
1200 6th Street

Detroit,  MI  48226
 Department  of Health  and 
(313) 256-2628
 Human  Setvices 
Long-Term  Care  Ombudsman 
Department  of Health
 6 Hazen  Drive 
Health  Facility  Licensing
 Concord,  NH  03301-6505 
and Certification
 (603) 271-4375 
3423 North  Logan

Martin  Luther  King Boulevard
 NEWJERSEY 
Lansing,  MI  48909

(517) 335-8491
 Department  of Health

Division  of Health  Facilities  Evaluation

MINNESOTA
 300 Whitehead  Road

Trenton,  NJ  08625-0367

Department  of Human  Rights
 (609) 588-7758

7th P1. and Minnesota  St.

500 Bremer  Towers

St. Paul,  MN  55101

(612) 296-5667

B-3
 Department  of Law and  OHIO

Public  Safety 
Division  on Civil Rights  Department  of Health

CN 089  Division  of Health  Facility  Regulations

Trenton,  NJ  08625-0089  Complaint  Unit

(609) 984-3091  246 North  High  Street

Post  Office Box 118

NEw MEXICO
 Columbus,  OH  43266-0118

(614) 644-1952

Department  of Labor 
Human  Rights  Division  OKLAHOMA

1596 Pacheco  Street 
Sante  Fe, NM  87502  State  Health  Department

(505) 827-6838  Special  Health  Services

1000 Northeast  10th Street

Department  of Health  Oklahoma  City, OK  73117-1299

Office of Licensing  (405) 271-6868

and  Certification 
525 Camino  De Los Marquez  Department  of Human  Services

Suite  2  Medical  Services Division

Sante  Fe, NM  87502  P. O. BOX 25352

(505) 827-4200  Oklahoma  City, OK  73125

(405) 557-2539

NEw YORK

Department  of Human  Services

State  of New York
 Aging Services  Division

Division  of Human  Rights
 Long-Term  Care  Ombudsman

Office of AIDS  Discrimination  Issues
 P.O. BOX 25252

55 West  125 Street
 Oklahoma  City, OK 73125

New York,  NY  10027
 (405) 251-6734

(212) 870-8607

Human  Rights  Commission

NORTH  CAROLINA
 Jim Thorpe  Building

Room  480

Department  of Human  Resources
 2101 North  Lincoln  Boulevard

Division  of Medical  Assistance
 Oklahoma  City, OK  73105-4904

1985 Umstead  Drive
 (405) 521-2360

Post  Office Box 29529

Raleigh,  NC  27626-0529
 OREGON

(919) 733-6681

Long-Term  Care  Ombudsman 
NORTH  DAKOTA
 Building  B, Suite  9 
2475 Lancaster  Drive,  NE 
Department  of Health
 Salem,  OR  97305 
Division  of Disease  Control
 (503) 378-6533 
State  Capitol

Bismark,  ND  58505
 Department  of Human  Resources 
(701) 224-2378
 Senior  and Disabled  Services 
313 Public  Service  Building 
Salem,  OR  97310 
(503) 378-3751 
B-4
 PENNSYLVANIA  VERMONT

Human  Relations  Commission  Department  of Aging and Disability

101 South  Second  St., Suite  300  Division  of Licensing  and Protection

P. O. Box 3145  103 South  Main Street

Harrisburg,  PA  17105-3145  Waterbury,  VT  05671-2306

(717) 783-6481  (802) 241-2345

RHODEISLAND  Human  Rights  Commission

133 State  Street

Commission  for Human  Rights
 Montpelier,  VT  05633-6301

10 Abbott  Park  Place
 (802) 828-2480

1st Floor

Providence,  RI  02903-3768
 VIRGINIA

(401) 277-2661

Department  of Medical

SOUTH CAROLINA
 Assistance  Services

Division  of Quality  Care  Assurance

Human  Affairs  Commission
 600 East  Broad  Street

Post  Office Drawer  4490
 Suite  1300

Columbia,  SC  29240
 Richmond,  VA  23219

(803) 253-6322
 (804) 786-7933

Health  and Human  Services
 Department  for Rights  of Virginians

Finance  Commission
 with Disabilities

1801 Main  Street
 101 North  14th Street,  17th Floor

Columbia,  SC  29201
 Richmond,  VA  23219

(803) 253-6374
 (804) 225-2042

SOUTH  DAKOTA
 Department  of Health

Division  of Licensure

Department  of Human  Rights
 and Certification

222 East  Capitol  Avenue
 3600 West Broad  Street

c/o Capitol  Building
 Suite  216A

500 East  Capitol  Avenue
 Richmond,  VA  23230

Pierre,  SD  57501-5070
 (804) 367-2100

(605) 773-4493

Department  for the Aging

TENNESSEE  Office of Long-Term  Care  Ombudsman

700 East  Franklin  St., 10th Floor

Department  of Health
 Richmond,  VA  23219

Division  of Health  Care  Facilities
 (804) 225-3141

Office of Civil Rights  Compliance

283 Plus Park  Boulevard
 WASHINGTON

Nashville,  TN  37219-5407

(615) 367-6318
 Human  Rights  Commission

711 South  Capitol  Way

TEXAS
 Suite  402

Evergreen  Plaza Building

Department  of Health  Olympia,  WA  98504-2409

Bureau  of Long Term  Care  (206) 753-0884

1100 West 49th  Street 
Austin,  TX  78756-3199 
(512) 458-7709 
B-5
 Department  of Social and 
Health  Services 
Office of Equal  Opportunity 
Post  OfficBeOX 45839

Olympia,  WA  98504 
(206) 753-0970 
WEST VIRGINIA

Department  of Health  and 
Human  Services 
Health  Facility  Licensure 
and Certification 
Capitol  complex 
Building  3, Room  535 
1900 Kanawha  Boulevard 
Charleston,  WV  25305 
(304) 558-0050 
Human  Rights  Commission 
1321 Plaza  Gast  Room  104/106 
Charleston,  WV  25301-1400 
(304) 558-2616 
WISCONSIN

Board  on Aging and Long Term  Care

214 N. Hamilton  St.

Madison,  WI  53703-2118

(608) 266-8944

Department  of Health  and

Social  Services

Division  of Health

Bureau  of Quality  Compliance

Facilities  Regulation  Section

1 West Wilson  Street

P. O. Box 309

Madison,  WI  53701-0309

(608) 266-2055

Department  of Industry,  Labor

and Human  Relations

Equal  Rights  Division

P. O. BOX 8928

201East  Washington  Avenue

Madison,  WI  53708

(608) 266-1997

B-6
 APPENDIX  C

LOCAL  PUBLIC  AGENCIES 
THAT  WILL  INVESTIGATE  COMPLAINTS 
KANSAS  CITY, MISSOURI 
Kansas  City Human  Relations  Department

414 East  12 St.

Kansas  City, MO  64106

(816)  274-1194

LOS ANGELES,  CALIFORNIA 
HIV/AIDS  Discrimination  Unit 
City Attorneys  Office 
200 N. Main  St., Suite  1600 
Los Angeles,  CAL  90012 
(213) 237-1901 
NEw YoR&  NEw YORK

NYC  Commission  on Human  Rights

40 Rector  St., 9th Floor

New York,  NY  10006

(212)  306-7465

SAN FRANCISCO,  CALIFORNIA 
San  Francisco  Human  Rights  Commission 
1170 Market  Street 
Suite  500 
San Francisco,  CA  94102 
(415)  252-2500 
. 
!  Based on our  contacts  in 10 metropolitan  areas. 
c-l
 APPENDIX  D

FULL  TEXTS OF COMMENTS  FROM  HHS AGENCIES 
Office  for Civil Rights ..................................................D-2

Public  Health  Service ...................................................D-5

Health  Care  Financing  Administration  .....................D-7

Administration  on Aging ............................................D.ll

D-1
  ,.m* .%  [D-2] 
&# offiaoftho~

;.   DEPARTMENT OFHEALTHa HUMAN SERVICES

;
9

%-
 Offbforolvtlm 
4  washhota% D.C. 20201 
3  =~ 
DIG-U  
%s..
=2= 
Ml?MORANDU?f

DATE  : 
FROM  :	 Ronald  G.  Copeland  \- Nu

Act ing  Director

office
 for  Civil  Rights

SUNECT  :	 OCR Comments  on OIG Draft  Report:  WIV/AIDS:  Nursing 
Home Discrimination  Complaints,lt  0EI-03-91-O0960. 
TO  :	 Brvan  B.  Mitchell 
Principal Deputy Inspector General 
Office of the Inspector General 
AS  a  follow-up  to  the  comments  we  made  in  the  March  8  exit 
conference  between OCR and OIG staff, I am forwarding our Cements 
on the  OIG Draft Report: sHIV\AIDS:  Nursing  Home Discrimination 
Complaints.

The Report makes three recommendations.  The first two are already 
being carried out to the  degree possible under our current budget 
restraints. 
. 
RECO~NDATION  #lu
The  Office  for  Civil  Rights  supports  a  Departmental  public 
such an 
information  initiative,  and we would welcome a lead role in 
require

effort  with  PHS, HCFA  a..n.d. 
 AoA.  Such  an  effort  would 
considerable beefing-up of OCRis  public  information capabilities 
(staff and resources).  OCR is already distributing thousands of 
fact sheets in six foreign languages (including Spanishf vietn~we  .

and  Haitian-Creole).  These  fact sheets  offer  specific,  easlry  .

understood  information  on  types  of  discrimination  as  well  as 
complaint filing procedures.  But more publications, newspaper and  . 
radio campaigns (not to mention N  public service annoUncemen*)+ 
and  all  the  other  elements  of  a  successful  public  mfomation 
effort  are  prohibitively  expensive.  We should also be certain that 
these public  information efforts do not displace efforts on  Title 
VI, Hill-Burton  and  the  ADA.  [D-3]

The OCR already undertakes efforts to provide technical assistance

to State and local governments, as well as to nursing homes (as in

Region  111s current program of assistance through  a State-wide

association  of  Pennsylvania nursing homes).  We  are constantly

exploring ways to  improve our technical assistance  initiatives~

including a possible notification system to State agencies and AIDS

advocacy groups.. Budgetary constraints remain a major inhibitor to

doing more.

As we stated in  the  exit  conference, OCR  does  not question the 
goals  set  forth  in  recommendations 1  and  2;  however,  we  are 
concerned that the implication is that we are resistant, if not 
derelict (i.e.: The OCR should offer technical assistance).  In

some way, the repoti should address the problems with available and

anticipated resources.

R=O-DATION  #3<  

The OIG report acknowledges our experience  in dealing with AIDS 
cases  nationally  and  our  ability to track them in our data base. 
On the other hand, it  points out our failure to meet the 90-day

time frame we established ourselves.  The report does not indicate

why this deficiency has  occurred  (See  our  earlier  comments).  W8 
suggest  that the  report highlight  the  effects  of our  range Of 
enforcement  responsibilities, the  increased volume  of complaint 
receipts coupled with a diminution of resources. 
The OCR recognizes the  time-frame problem  and  has  developed new 
processing  guidelines  in  the  revised  Investigative  Procedures 
Manual.  Copy attached for your ready  reference. 
GF!N~  co~

In  discussing  me  investigative  process,  the  repofi  does .no& ._ 
address the enforcement capability of OCR.  The report implles  that  --
compliance agreements are  of enforcing the 
OCRIS  sole  means  hW. 
This was also a recurring criticism  of  the  OIGts  report  on  our  - 
Hill-Burton  activities.  - _____ 
On page 13, in  the  paragraph  Fines and Monetary  Penalties were 
Rare,$the OIG  suggests  that  OCR  willfully  refrains  from  lIUpOSln9 
fines.  The  rePort  should  note  that  OCR has  no  authority  to  impose 
fines.  [D-4

OCRco~#  P 3 
GENERAJ,COMl~@
NT  t. 
The report  refers to OCR as the Office OF  Civil Rights, not the 
Office FOR Civil Rights. 
The use of the word respondents (pp. 11 and 14) is unclear and

confusing.  When referring to OCR, the report should use the words

regional manager(s).

Attachment 
. 
.  *r- * 
. 4
:	 DEF~MENT  oF HEALTH  & HUMAN  SERVICES  Pubfc~ 
.
:  [D-5 
$  -
Memorandum 
.MAY  19~ 
Acting Assistant Secretary for Health

- Office of Inspector ~eral  (OIG) Draft Report  HIV/AIDS: 
Nursing Home Discrimination  Complaints,  OEI-03-91-00960 
Acting  1n8pector  General, OS 
To 
Attached are the Public Health S~ce  comments on the subject

OIG draft report.  We have provided ccnnmentson the reports

recommendations that are directed to the Office for Civil

Rights, as well as suggested narrative changes to clarify

certain statements from a public health perspective.

dfiiA?#
A-&

Audrey P  Manley, M.  , M.P.H.

Attachment
 [D-6] 
We  have reviewed the ffndlngs and conclusions in this draft 
report.  Although there are no recommendatbns  directed 
specifically to PHS, we offer the following comments. 
We concur with the first recmmenda tion which calls for the

Office for  Civil  Rlght8  (OCR)  to  lead  a  De~
initiative  with  PHS,  the  Health  Care  Finanoing  ~strationt 
and  the  l@mi.nistration  on  ~ing  to imp~  public information 
about the occurrence of this type of infommtion  and where to

file complaints.  If it becomes an oCR priority to initiate

and  lead  this  effort,  we  will  be  willing  to  assist  them  in 
this  endeavor. 
We  support in pzinciple  the  reports  second  and  ~ 
recommendations  that  OCR  offer technical assistance to State 
and local ~tsr  and  frame for 
meet  its  three  month  time 
-resolving AIDS-related complaints.  H~?  while  we  support 
the  sharing  of  expertisa  and  expedited  resolution  of  AIDS-
related  complaints,  we  recognize  that  implementation  of  the 
OIG  rec ommendations  could  be  impacted  by  0CR8s  staffing levels 
and budgetary resources.  Therefore,.we defer to OCRs 
position regarding the feasibility of ~lementhg  these

recommendations.

Finally, we offer  the  following  suggested  wording  to  help 
clarify an item in the report.  On pages i and 1, the report 
states that AIDS takes on characterzstfcs of long-term 
illness ..., and ... AIDS h  beginning to  take  on  the 
characteristics  of  a  long-term  dLsease.  . . m  We  suggest that it 
would be more appropriate to s~te  Mat  Iw~Lth therapeutic 
advances that both improve survival  and  quality  of  life, 
persons  with  HIV  and  AIDS  will  need  the  full  range  of  health 
care  sexn7ice8  similar  to  those  a~i~ble  to  ~ferers  of  other 
chronic  illnesses.    GD EPARTMENT  OF HEALTH&  HUMAN SERVI_ 
/ 
1 
Memorandum
7 
8-99
JRulm 
Date 
.. . 
Bruce  C. Vladeck
From 
Administrator 
HIV/AIDS:  Nursing  Home. 
Subject	 Office of InspectorGenera.i(OIG)  Draft  Reporc 
DiscriminatiCoonmplains(OE143-91_) 
To 
Bryan  B. Mitchell 
PrincipDaelp utyInspectoGre
neral

examinedthe handlingof 
We reviewed the above-referen=d  draft report which 
nursinghome discriminationcomplaintsfiled againstnursinghomesthatdo not admit 
persons with the human irnrnunodeficiencyvirus (HIV)  or squired  immune deficiency 
syndrome(AIDS). 
We  commend OIG  for its extensive examinatioonfthedataandforproviding

severauls
eful.insi@ts on theissueof nursinghome discretion  againstPersonswith 
HIV  or AIDS. 
HCFA  concurwsi ththerecommentitiocno ntaineidn thereport.O
ur deticd 
commentsareattachefdo ryourconsideratio~~a nk YOUfOrtheopportuni~to

reviewandcommentonthisd rafrte port.P leaseadviseu
sifYOUagreewithour

positioonn thereportrse commendatioant yourearliecsotn
 venience=

Attachment

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  [D-8] 
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02  mom 
HIV/AIDS:  Nursing Home DiscriminationComplaints 
(OE1-03-91-00960) 
Recommendation 
The  Office for Civil Rights (OCR)  should lead a departmental initiativewith the 
Public Heaith Service,Health Care FinancingAdmi.rtistratio~  and Administration  on 
Aging to improve  public information  about  the  occurrence  of nursinhgome  admission 
discriminationagainstpersonswithhumanimmunodeficiencyvirus(HIV)  or squired 
immune deficicnq syndrome (AIDS),  and where to ~e  complaints. 
HCFA  Resnonse 
We  concur  with  the  recommendation.  We recognize the general need for more 
intensiveuse of outreach materialsto improve access to HIV/AtDS-reiated care under 
Medicaid  and would be happy to work with OCR.  We  have already begun 
preliminary  work within HCFA  to consider  how HCFA  central office and regional 
office (RO)  staffscan help develop Stateand local outreachmaterialsand more 
closelycoordinatewith OCR. 
In addition,HCFA  has been  taking a variety of actions  to addresHsIV/AIDS 
discrimination: 
o  In the  May/June1988issueo f~ublicH ealthRenortsf,ormerHCFA 
Administrator William Roper wrote an article called Making Fair Decisions 
About FinancingCare for People With AIDS.  In the article,Dr. Roper 
indicated  that  a central  principle  guiding HCFA  in the fight against HIv/mS 
is that  care must  never be denied  to a person  who has contracted  AIDS or 
HIVfnfcction. 
o	 OCR  discussed  referral  procedures  and &nds  in complaints  during  HCFAS 
annual  regional  coordinators  meeting  in  1989. 
0  In a February  16, 1990, memorandum  to the  ROS,  HCFA  outlined  the  legal 
basis for pursuing  discrimination  complaints,  procedures  for referrals  to Om, 
aid  possible  remedies.  The.- ROS  subsequently  Conveyd  this  inform.  atio.n. to the 
States.  [D-! 
Page  2 
0	 OXIMay 1, 1992 HCFA  obtained  and disseminated  an opinion  from  the OffiCC 
of the  GeneralCounselindicatitnhgatMedicaidmanagedcareprfide=may   
not disenroll  a recipient  with HIV/AIDS  against  that  persons  will. 
o  A number  of ROS have reported  their active involvement  with their  OCR  and 
Public Health  Service counterparts  in referrirt~  documenting  and  helping to 
negotiate  reported  cases of HIV/~S-relateddiscrimination.  pretiq 
analysis of State Medicaid program reviews in the area of HIV/AIDS  CQ-
that  HCFA  RO  coordinatorshavebeen activein addressingdiscrimination. 
While thisrecmnrnendationisconsistentwith our  previous  activitiesand plans with 
respect to HIV/AIDS  discrimination,Migetaxy  considerationsmay constrainthe 
actual  volume  of materials  HCFA  can produce  and  distribute  directly, given the 
variety  of audienceslistedin MC report.  Model materials  developed either by HCFA 
or by the States  themselves  may provide  a useful alternative. 
General  Comments 
OIG  points out  that  of the  62 individuals seeking admission,  the  eventual  status  of X 
was unknown.  This is an indication  that  more  a~untability  by the  investigating 
agencies  is needed.  According  to the rcpo~  r+idvdy  few complaints  are  filed 
nationwide  and there  is widespread  lack of a~eness  about  the  investigating  agencies. 
The  credibili~  and future  success of lo@  State,  and  Federal  agencies  in resolving 
complaints  will be hindered  if the few alnplainants  they do seine  fall through  the 
cracks. 
Based  on the facts presented  in this repo~  a further  recommendation  OIG  might 
consider  is that  agencies which handle  ~rnplaint.s  about  HIV/AII)S  discrimination  in 
nursing  home  admissions  should emphasize  Mrrecting  current  violations,  as well as 
preventing  future  discrimination.  The  fact thattheaveragelength  of OCRS 
investigation  period  to resolve DS  discrimination  cases is nearly  7 months  (more 
than  twice their  goal) is of great  concern.  It wcdi  perhaps  be interesting  and 
enlightening  if the study looked  in detail  at the causes  for discrimination.  This is not 
to suggest that  any cause for discrimination  is justifiable,  M  the  case  of the 
discrimination  itself could seine  as a prompt  to finding solutions.  For  example  if 
persons  with AIDS are being denied  access to nursing  homes  because  of ignormw  or 
fear,  training  and  education  may  be  a remedy.  However,  if these  individuals  are 
denied  setices  for other  reasons, ~uch as the  cost of their  care,  or a facil[qs  inability 
to provide  the  types  of care  needed,  then  the  recommendations  offered  by the  study 
may  not  alleviate  discrimination  problems. 
  .. 
  [D-

Page  3 
Technical  Comments 
.. 
Page  1: It might be useful to note  in the background  section  how discrimination  in  -
nursing  homes compares  to HIV/AIDS  discrimina tion with other  pruvider  groups. 
It may set a proper  context for nursing  home  dixrimhticm  ~  hdi=~g  how m~ 
and what  the nature  of complaints  are  against other  provide~  such as health 
maintenance  organizations,  dentists,  general  practitionc~  etc 
Page  11:  The report  states  thatof 62 complainants  seeking  admissio~  only 12 wem 
admitted.  While it is titai  that  facilities  against which complaints  are  filed take 
corrective  action  to prevent  future  discrimination  (e.g.  review  admission  policies or 
maintain  a record  of reasons  certain  applicants  are  not  admitted),  the  fact that  the 
complainants  need  to find placement  in nursing homes  is a serioumsatter.  OIG  might 
cons;der  conducting  a de~ed  anal~is  to exar&ne why typical corrective  actions do 
not  include getting the person with AIDS  into a nufiing  home. 
/ 
.  ,.  [D-1 
DEPAR~  OF HEALlli & HUMAN =- Ofiimdlbesaau=y
~4PQl 
W~  DC.ZXUll

To:  Bryan B. Mitchell

Principal Deputy Inspector General

FROM :  Deputy Commissioner on Aging

SUBJECT:  OIG Draft Report:  HIV/AIDS:  Nursing Home

Discrimination Complaints,m 0E1-03-91-O0960

Thank  you  for the opportunity to review the above-referenced

draft  report.  The  report addresses  a  critical  subject,  and  the 
purpose,  background,  findings  and  recommendations  are  clearly 
presented. 
we  suggest  only  the  following  minor  change=: 
  on  page  5,  paragraph  1,  change  Federally  funded 
nursing  homes  to  nursing  facilities  which  parti;& 
in  the  Federal  Medicare  and  Medicaid  programs. 
will  clarify  that  tectilcally  the  residents,  not  the 
homes,  receive  Federal  funding.  (The  homes  are 
certified  to  participate  in  these  federally-funded 
programs.  Also,  the  1987  nursing  home  reform  law  uses 
the  term  nursing  faci.lity1  for  homes  previously 
designated  as  skilled  or  intermediate  care  facilities.) 
	 on  page  6, paragraph 4, change the first sentence to 
specify the type of complaints referred to  complaints 
regarding HIV/Aids discrimination  in admissions  to

avoid any possible confusion on the part of the reader.

	 The finding on page 11   Fewer than 20% of cases 
reviewed found nursing homes in compliance~$ should be 
included in the Executive Summary.  The summary now 
refers only to cases requiring corrective action, but 
the term compliance~~conveys a more descriptive 
concept for those not familiar with the usual Office 
for Civil RightsC approach. 
Many State Long-Term Care  OtiUdsrnen  and attorneys in the Network 
on Aging have developed strategies  for resolving  complaints  about 
nursing  home  discrimination  in  a~isslons  due  to  the  applicants 
physical  condition.  This  experience  may be useful  to  the  work  of 
any  departmental  task  force  which  may  be  formed  in response  to 
this  report.  We  look  forward  to  participating  in  such  a  group  to 
address  the  important  subject  of  this  report. 
2i?%-E@ .