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 OIG’SOffice 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 OIG’S 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 OIG’SOffice 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 

Nunw”ngHome 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 Administration’s (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 agency’s 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 OCR’s 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 CDC’S 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 President’s 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. 

Within HHS, the OjJicefor ~“vil Rights (OCR) investigates complaints 

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 HUD’s 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). Twentyseven 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 

Department’s 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 antidiscrimination 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 OCR’S. 

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 attorney’s 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 State’s 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 OCR’s 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 

1986 

1987 

1988 

1989 

1990 

1991 

TOTALS 

COh4PLAlNT CASES REVIEWED 

FEDERAL CASES 

Two Years 

63 

93 

156 

STATE LOCAL TOTALS 

CASES CASES 

Au Years Alf Years 

1 1 

17 17 

22 1 23 

1 64 

10 103 

1931 193 

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


INVESTIGATING AGENCY


Civil/HumanRights


License and Certification


Long-Term Care Ombudsmen


TOTALS


lkere were far fewer comphinanfi 

NUMBER OF AGENCIES 

WITH CASES 

9 

4 

2 

15 

TOTAL NUMBER


OF CASES


217


24


3


244


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 

Relative/Friend 

State Ageney 

AdvoeaeyGroup 

Patient 

Anonymous 

Legal Advocate 

Federal Ageney 

SocialWorker 

Physician 

Local Agency 

Numing Home 

TOTALS 

8 7 15 

6 4 10 

3 6 9 

6 2 8 

1 5 6 

o	 6 6 

3 0 3 

1 1 2 

o 2 2 

o 1 1 

o 1 1 

1 0 1 

29 35 64 

9

Respondents believe complaint numben are low compared to actual discn”rm”nahon. 

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 CORRECI’IVE ACI’IONS.


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 

Corrective Action./WolationCited 

~ Aetim/Wolation Not Cited 

subtotals 

Nursing Home In Compliance


AdministrativeClosure


Referred to Other Ageney


Wltlldrawn


Pending


Data Not Available


Subtotals


TOTALS


FEDERAL STATE TOTALS 

9 9 18 

95 136 231 

104 145 

(67%) (59%) (6:;) 

34 33 67 

3 56 59 

o 1 1 

1 3 4 

14 2 16 

o 4 4 

52 151 

(33%] (4?%) (%%] 

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 home’s 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 OCR’s 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.w”ly. 

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 OCR’s 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 HIVrelated 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 

home’s 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 Gray’s 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 America’s 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 York’s Response” (Albany: Department of 

Health, 1989). 

5.	 Director, Office of Medicaid Management, BQC, to all regional administrators, 

et al., 16 February 1990. 

19

6. 

7. 

8. 

9. 

10. 

11. 

12. 

13. 

Medicaid Program Review Guide, HIV/AIDS, Fiscal Year 1991-1992. 

Wendy E. Parmet, “AIDS and the Limits of Discrimination Law,” Law, 

Medicine and Health Care, pp. 61-72 (Summer, 1987). 

IHPP, A Summary of HW/AIDS Laws from the 1990 State Legisladve Sessions 

(Washington, DC, January 1991). 

The 10 metropolitan areas were Baltimore, Baton Rouge, Kansas City, Los 

Angeles, Memphis, Miami, Newark, New York, San Francisco, and Tulsa. 

Memorandum and expedited procedures from OCR Director to OCR Regional 

Managers, October 29, 1987. 

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. Minnesota’s complaints were not 

associated with the Fair Housing Amendments, and Wisconsin has not had any 

complaints. 

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. 

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, Massachusetts,New 

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~ and Tennessee. 

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: IOWZ Kansas,Missouri,and Nebraska. 

601 East 12th Street


Room 248


Kansas City, MO 64106


(816) 426-7277


Region VIII 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 

ALABAMA 

Department of Human Resources 

Office of Civil Rights and 

Equal Employment 

50 Ripley Street 

Montgomery, AL 36130-1801 

(205) 242-1550 

ALASKA 

State Commission for 

Human Rights 

800 A Street 

Suite 202 

Anchorage, AK 95501 

(906) 276-7474 

ARKANSAS


Department of Human Services


Office of Long Term Care


Post Office BOX 8059


Little Rock, AR 72203


(501) 682-8487


CALIFORNIA


Department of Health Services


Office of Civil Rights


714 P St., Room 1050


Sacramento, CA 95814


(916) 657-1411


COLORADO


State of Colorado


Civil Rights Division


1560 Broadway, Suite 1050


Denver, CO 80202


(303) 894-2997


Department of Health


Health Facilities Division


4210 East 1lth Avenue


Denver, CO 80220-3716


(303) 692-2800


WLLL INVESTIGATE COMPLAINTS 

CONNECTICUT


Commission on Human 

and Opportunities 

90 Washington Street 

Hartford, CT 06106 

(203) 566-3352 

Department of Aging 

175 Main Street 

Hartford, CT 06106 

(203) 566-7770 

Rights 

Office of Protection and Advocacy 

for Persons with Disabilities 

60-B Weston Street 

Hartford, CT 06120 

(203) 297-4300 

DELAWARE


State of Delaware


Division of Aging


Millford State Service Center


11/13 Church Avenue


Millford, DE 19963


(302) 422-1386


Office of Health Facility


Licensing and Certification 

3000 Newport Gap Pike 

Wilmington, DE 19808 

(302) 995-6674 

DISTRICI’ OF COLUMBIA 

Department of Consumer and 

Regulatory Affairs 

Health Facilities Division 

614 H Street, Northwest 

Room 1014 

Washington, DC 20001 

(202) 727-7201 

B-1

District of Columbia


Office of Human Rights


and Minority Business


2000 14th Street, Northwest


Washington, DC 20009


(202) 939-8740


FLORIDA


Department of Health and


Rehabilitative Services


Office of Civil Rights


1317 Winewood Boulevard


Building 3, Room 203


Tallahassee, FL 32399


(904) 487-1901


Department of Health and


Rehabilitative Services


Office of Licensure and Certification


2727 Mahon Drive


Tallahassee, FL 32308


(904) 487-2527


Long-Term Care Ombudsman Council


1320 South Dixie Highway


3rd Floor


Coral Gables, FL 33146


(305) 663-2085


GEORGIA


Department of Human Resources


Office of Regulato~ Services


878 Peachtree Street, NE


Atlanta, GA 30309


‘(404) 894-5137


HAWAII


Department of Health


Hospital and Medical Facilities Branch


1270 Queen Emma Street


Honolulu, HI 96813


(808) 586-4077


IDAHO


Department of Health and Welfare


Bureau of Facility Standards


450 West State Street


Boise, ID 83720-5450


(208) 334-6626


ILLINOIS 

Department of Human Rights 

623 Stratton Building 

Springfield, IL 62706 

(217) 785-5119 

INDIANA 

Civil Rights Commission


32 East Washington Street


Suite 90


Indianapolis, IN 46204


(317) 232-2600


IOWA


Civil Rights Commission


Grimes State Office


507 10th Street


Des Moines, IA 50319


(515) 281-4121


Department of Inspection


and Appeals


Health Facilities Division


Lucas Office Building


2nd Floor


Des Moines, IA 50319


(515) 281-4233/4125


KANSAS


Human Rights Commission


Landon State Office Building


Suite 851S


900 South West Jackson


Topeka, KS 66612-1258


(913) 296-3206


KENTUCKY


Commission on Human Rights


701 West Mohammed Ali Boulevard


Post Office Box 69


Louisville, KY 40201-0069


(502) 588-4024


Office of Inspector General


Division of Licensing and Regulations


CHR Building, 4th Floor E


275 East Main Street


Frankfort, KY 40621-0001


(502) 564-2800


B-2 
LOUISIANA


Department of Social Services


Civil Rights Bureau


546 Main Street


Baton Rouge, LA 70801


(504) 342-2700


Human Rights Commission


State House, Station 51


Augusta, ME 04333


(207) 289-2326


MARYLAND


Commission on Human Relations


20 East Franklin Street


Baltimore, MD 21202-2274


(410) 333-1717


MASSACHUSETTS


Commission Against Discrimination


1 Ashburton Place


Room 1305


Boston, MA 02109


(617) 727-3990 Ext. 211


MICHIGAN


Department of Civil Rights


1200 6th Street


Detroit, MI 48226


(313) 256-2628


Department of Health


Health Facility Licensing


and Certification


3423 North Logan


Martin Luther King Boulevard


Lansing, MI 48909


(517) 335-8491


MINNESOTA


Department of Human Rights


7th P1. and Minnesota St.


500 Bremer Towers


St. Paul, MN 55101


(612) 296-5667


MISSISSIPPI


Division of Medicaid


Office of Long-Term Care


Robert E. Lee Building, Suite 801


239 North Lamar Street


Jackson, MS 39201-1399


(601) 359-6050


MISSOURI


Commission on Human Rights


Post Office Box 1129


Jefferson City, MO 65102-1129


(314) 751-3325


MONTANA


Human Rights Commission


1236 6th Avenue


Post Office Box 1728


Helena, MT 59624-1728


(406) 442-5506


NEW HAMPSHIRE


Department of Health and 

Human Services 

Bureau of Health Facilities 

Administration 

6 Hazen Drive 

Concord, NH 03301-6527 

(603) 271-4471 

Department of Health and 

Human Setvices 

Long-Term Care Ombudsman 

6 Hazen Drive 

Concord, NH 03301-6505 

(603) 271-4375 

NEW JERSEY 

Department of Health


Division of Health Facilities Evaluation


300 Whitehead Road


Trenton, NJ 08625-0367


(609) 588-7758


B-3

Department of Law and 

Public Safety 

Division on Civil Rights 

CN 089 

Trenton, NJ 08625-0089 

(609) 984-3091 

NEw MEXICO


Department of Labor 

Human Rights Division 

1596 Pacheco Street 

Sante Fe, NM 87502 

(505) 827-6838 

Department of Health 

Office of Licensing 

and Certification 

525 Camino De Los Marquez 

Suite 2 

Sante Fe, NM 87502 

(505) 827-4200 

NEw YORK


State of New York


Division of Human Rights


Office of AIDS Discrimination Issues


55 West 125 Street


New York, NY 10027


(212) 870-8607


NORTH CAROLINA


Department of Human Resources


Division of Medical Assistance


1985 Umstead Drive


Post Office Box 29529


Raleigh, NC 27626-0529


(919) 733-6681


NORTH DAKOTA


Department of Health


Division of Disease Control


State Capitol


Bismark, ND 58505


(701) 224-2378


OHIO


Department of Health


Division of Health Facility Regulations


Complaint Unit


246 North High Street


Post Office Box 118


Columbus, OH 43266-0118


(614) 644-1952


OKLAHOMA


State Health Department


Special Health Services


1000 Northeast 10th Street


Oklahoma City, OK 73117-1299


(405) 271-6868


Department of Human Services


Medical Services Division


P. O. BOX 25352


Oklahoma City, OK 73125


(405) 557-2539


Department of Human Services


Aging Services Division


Long-Term Care Ombudsman


P.O. BOX 25252


Oklahoma City, OK 73125


(405) 251-6734


Human Rights Commission


Jim Thorpe Building


Room 480


2101 North Lincoln Boulevard


Oklahoma City, OK 73105-4904


(405) 521-2360


OREGON


Long-Term Care Ombudsman 

Building B, Suite 9 

2475 Lancaster Drive, NE 

Salem, OR 97305 

(503) 378-6533 

Department of Human Resources 

Senior and Disabled Services 

313 Public Service Building 

Salem, OR 97310 

(503) 378-3751 

B-4

PENNSYLVANIA 

Human Relations Commission 

101 South Second St., Suite 300 

P. O. Box 3145 

Harrisburg, PA 17105-3145 

(717) 783-6481 

RHODEISLAND 

Commission for Human Rights


10 Abbott Park Place


1st Floor


Providence, RI 02903-3768


(401) 277-2661


SOUTH CAROLINA


Human Affairs Commission


Post Office Drawer 4490


Columbia, SC 29240


(803) 253-6322


Health and Human Services


Finance Commission


1801 Main Street


Columbia, SC 29201


(803) 253-6374


SOUTH DAKOTA


Department of Human Rights


222 East Capitol Avenue


c/o Capitol Building


500 East Capitol Avenue


Pierre, SD 57501-5070


(605) 773-4493


TENNESSEE 

Department of Health


Division of Health Care Facilities


Office of Civil Rights Compliance


283 Plus Park Boulevard


Nashville, TN 37219-5407


(615) 367-6318


TEXAS


Department of Health 

Bureau of Long Term Care 

1100 West 49th Street 

Austin, TX 78756-3199 

(512) 458-7709 

VERMONT


Department of Aging and Disability


Division of Licensing and Protection


103 South Main Street


Waterbury, VT 05671-2306


(802) 241-2345


Human Rights Commission


133 State Street


Montpelier, VT 05633-6301


(802) 828-2480


VIRGINIA


Department of Medical


Assistance Services


Division of Quality Care Assurance


600 East Broad Street


Suite 1300


Richmond, VA 23219


(804) 786-7933


Department for Rights of Virginians


with Disabilities


101 North 14th Street, 17th Floor


Richmond, VA 23219


(804) 225-2042


Department of Health


Division of Licensure


and Certification


3600 West Broad Street


Suite 216A


Richmond, VA 23230


(804) 367-2100


Department for the Aging


Office of Long-Term Care Ombudsman


700 East Franklin St., 10th Floor


Richmond, VA 23219


(804) 225-3141


WASHINGTON


Human Rights Commission


711 South Capitol Way


Suite 402


Evergreen Plaza Building


Olympia, WA 98504-2409


(206) 753-0884


B-5

Department of Social and 

Health Services 

Office of Equal Opportunity 

Post OfficeBOX 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 Attorney’s 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 OF HEALTH a HUMAN SERVICES


;

9


“%-
 4 

Ml?MORANDU?f


DATE : 

FROM :	 Ronald 

Act ing 

office


Offbforolvtlm 

washhota% D.C. 20201 

3 =~ 

DIG-U ­

%s..=2= 

G. Copeland ‘\- Nu


Director


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 

information initiative, and we would welcome a lead role in such an 

and AoA. Such an effort would require
 effort with PHS, HCFA ....


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 111’s 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 OCRIS sole means of enforcing the 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- * 

:	. DEF~MENT oF HEALTH & HUMAN SERVICES Pubfc~ .

: [D-5 

‘$ 4-

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 

To Acting 1n8pector General, OS 

Attached are the Public Health S~ce comments on the subject


OIG draft report. We have provided ccnnmentson the report’s


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 report’s second and ~ 

recommendations that OCR offer technical assistance to State 

and local ~tsr and meet its three month time frame for - resolving AIDS-related complaints. H~? while we support 

the sharing of expertisa and expedited resolution of AIDSrelated complaints, we recognize that implementation of the 

OIG rec ommendations could be impacted by 0CR8s staffing levels 

and budgetary resources. Therefore, .we defer to OCR’s 

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. ” 
/ DEPARTMENT OF HEALTH& HUMAN SERVI_ 

1 

8’-99 7 G Memorandum

Date “JRulm .. . 

Bruce C. Vladeck From Administrator 

Subject	 Office of Inspector Genera.i(OIG) Draft Reporc “HIV/AIDS: Nursing Home. 

Discrimination Complains”(OE143-91_) 

To 

Bryan B. Mitchell 

Principal DeputyInspector
 General


We reviewed the above-referen=d draft report which examined the handlingof 

nursinghome discriminationcomplaintsfiled against nursing homes that do not admit 

persons with the human irnrnunodeficiencyvirus (HIV) or squired immune deficiency 

syndrome (AIDS). 

We commend OIG for its extensive examinationofthedataand forproviding


several
 useful.insi@ts on the issueof nursinghome discretion against Persons with 

HIV or AIDS. 

HCFA concurs withtherecommentition contained inthereport.
Our deticd 

commentsareattached foryourconsideratio~ ~ank YOU fOrtheopportuni~to


reviewandcomment on this draft report. Pleaseadvise
usifYOUagreewithour


position on thereport’s recommendation atyourearliest
 convenience=


Attachment


.-


%


o 

Lc o 

0 * 

—— 
[D-8] 

c~) 

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 nursinghome admission 

discriminationagainstpersons with human immunodeficiencyvirus (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) staffs can help develop State and local outreach materialsand more 

closelycoordinate with OCR. 

In addition,HCFA has been taking a variety of actions to addressHIV/AIDS 

discrimination: 

o In the May/June1988issue of~ublic HealthRenorts,formerHCFA 

Administrator William Roper wrote an article called “Making Fair Decisions 

About Financing Care 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 

HIV”fnfcction.” 

o	 OCR discussed referral procedures and &nds in complaints during HCFA’S 

annual regional coordinators’ meeting in 1989. 

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 informationto the . . . States. 

0 
[D-! 

Page 2 

0	 OXIMay 1, 1992 HCFA obtained and disseminated an opinion from the OffiCC 

of the GeneralCounselindicating thatMedicaidmanagedcareprfide=may “ 

not disenroll a recipient with HIV/AIDS against that person’s 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 CQthat HCFA RO coordinatorshave been active in addressing discrimination. 

While this recmnrnendationis consistentwith 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 audiences listedin 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 OCR’S 

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 ignorm’w 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[q’s 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 seriousmatter. 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 HEAL’’lli & HUMAN =- Ofiimdlbesaau=’y

~4PQl 

W~ DC.ZXUll


To: 

FROM : 

SUBJECT: 

Thank you 

Bryan B. Mitchell


Principal Deputy Inspector General


Deputy Commissioner on Aging


OIG Draft Report: “HIV/AIDS: Nursing Home


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


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@ . 

—