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April 12, 2002
Good morning. I am Robinsue Frohboese, the Principal Deputy and Acting Director of the Office for Civil Rights (OCR). At the outset, I would like to join my colleagues in thanking the Congressional Black Caucus, the Congressional Hispanic Caucus, and the Congressional Asian Pacific American Caucus for holding this important and timely hearing and devoting the day to an examination of the research about health disparities and the Department's activities to eliminate them.
Health disparities are life and death issues that are critical to the nation, critical to HHS, and critical to OCR. As the Caucuses, the Department, and the IOM and other researchers agree, the question of whether there are health disparities has long since been answered. The question now -- and the subject of this hearing -- is what we are doing to eliminate them. And, as the Department's primary defender and promoter of the public's right to non-discriminatory access to and receipt of services, the OCR is committed to playing a critical and central role in eliminating these disparities that affect the health, well-being and future of our nation. This morning, I would like to give you a brief overview of the mission and jurisdiction of our office, discuss OCR's role in the Departmental initiative to eliminate racial and ethnic health disparities, and then highlight some of our recent and planned activities.
OCR's mission is to promote and ensure that people have equal access to and opportunity to participate in and receive services in all HHS programs without facing unlawful discrimination. We are responsible for enforcing various civil rights laws and regulations that prohibit discrimination based on race, color, national origin, disability, age, and in some instances, sex and religion. OCR historically has played a major role in a variety of civil rights initiatives in health care, beginning with the desegregation of hospitals following the advent of the Medicare program in the 1960's. Today, OCR continues to promote equal access and non-discrimination through prevention and the elimination of unlawful discrimination and by assisting HHS to carry out its overall mission of improving the health and well being of all people affected by its programs.
OCR'S ROLE IN THE HEALTH DISPARITIES DEPARTMENTAL INITIATIVE
As we carry out our mission, our compliance work is integrated into the Department's Initiative to Eliminate Racial and Ethnic Health Disparities in a variety of ways. In keeping with the Secretary's emphasis on prevention, many of our activities focus on public education, outreach, and technical assistance. With currently 243 staff in headquarters, 10 regional offices, and two field offices throughout the United States, OCR is in a unique position to contribute to the Departmental effort to eliminate disparities on a national and regional basis. We do this by disseminating information and materials on health disparities to all of the organizations that we serve, as part of our effort to prevent discrimination or potentially discriminatory practices by health care providers, educate consumers, and provide technical assistance. Our experiences demonstrate that by working with communities of color as well as with health care providers to enhance access to quality health care, we can prevent discrimination and thereby minimize the need for enforcement. We have focused on building collaborative relationships with our partners within HHS -- such as the Office of Minority Health, the Centers for Medicare and Medicaid Services, the National Institutes of Health, and the Centers for Disease Control -- as well as other federal, state, and local agencies, stakeholders, community and faith organizations, professional health associations and academic institutions, and providers. In addition to outreach, we also conduct compliance reviews to evaluate policies and practices and provide technical assistance to health care providers.
Since 1964, we also have been investigating complaints raising issues of discrimination against members of racial, ethnic and national origin groups in health care settings as part of our authority under Title VI of the Civil Rights Act. As noted in the IOM report, our now nearly 40 year history of investigating Title VI complaints has taken on a heightened importance following the Supreme Court's decision in Alexander v. Sandoval.
As we have heard this morning, despite notable progress in the overall health of the nation, racial and ethnic minorities experience disparities in quality of heath care and access to services. These findings support a large body of previously published studies, many of which conclude that racial and ethnic disparities may remain even after controlling for socioeconomic status and other factors. The IOM is to be commended for taking an important step in looking at the role of bias, stereotyping, and clinical uncertainty, and how these factors may contribute to racial and ethnic health disparities and for its recognition of the important compliance and enforcement role that OCR has to play in eliminating racial and ethnic health disparities. Bias, or discriminatory policies and practices, are factors that we have been addressing in our Title VI complaints for years, beginning with the elimination of the stark vestiges of de jure segregation during the 1960's and continuing to the present in which discrimination and disparities in access to and quality of health care may result unintentionally from facially neutral policies and practices. Our work with health care providers consistently has shown that we have a health care system in which practitioners are committed to nondiscriminatory services. When we have identified problems, we have been able to work successfully with providers to resolve them. Our experience confirms our belief that medical practitioners want to do what's right for all patients and we therefore hope that the IOM report will provide a basis for additional commitment within the profession to explore fully how the provider's role in the clinical encounter with people of color may unintentionally result in disparities.
The elimination of racial and ethnic health disparities in HHS funded programs continues to be a major OCR priority. Our efforts cut across and intersect with many overarching Departmental priorities and themes, including prevention, collaboration, access to quality health care, HIV/AIDS, organ donation, and the New Freedom Initiative. And our efforts reach out to all communities of color affected by health disparities, from African-Americans, Hispanics, Asian and Pacific Americans, and Native Americans. In FY 2002, OCR estimates that we will spend approximately 15-20% of our $32 million budget on health disparities. In some regions, as much as 30 percent of staff time has been dedicated to specific disparities initiatives.
PREVENTION: OUTREACH AND EDUCATION
A major focus of OCR's initiative to eliminate racial and ethnic health disparities has been to increase health care provider awareness of discrimination and disparities issues through innovative outreach and education. For example, in the New York metropolitan area, OCR has taken the lead in a variety of creative collaborative public education, outreach and technical assistance activities to eliminate racial and ethnic health disparities. In consultation with the New York Academy of Medicine and the Greater New York Hospital Association, as well as a number of area hospitals, our OCR NY office has developed a self-evaluation tool to assess policies, practices and procedures to determine whether health care services are accessible to minority patients. A number of New York City metro area hospitals are using this framework to determine what steps are needed to improve accessibility to minority patients. This is an example of prevention at its best -- improving service delivery before the problems rise to the level of a civil rights violation. Our NY regional office's outreach efforts have also achieved other positive results. Based on a series of meetings and listening sessions about health disparities throughout New Jersey, the University of Medicine and Dentistry of New Jersey established an Institute for the Elimination of Health Disparities in January of this year, funded in part, through seed money from the HHS Office of Minority Health. In the next few weeks, our New York OCR office will participate with the HHS Office of Minority Health in "A Call to Action: Eliminating Racial Disparities in Health," a conference sponsored by the African-American Health Education and Development Foundation and the Long Island Minority AIDS coalition and funded by the NY State Office of Minority Health to educate community leaders about racial disparities in health and to promote collaborative activity to eliminate racial disparities.
Recently, OCR's Chicago office initiated a special project to explore and address the disparities in the receipt of kidney transplantation. The regional staff collected data, worked with local and national organizations involved in renal care, visited with dialysis patients and staff, and interviewed transplant professionals and legislators. They found that the disparities were multifactoral, and extended beyond the well documented shortage of available organs to minority patients. From this information, staff concluded that any effort to lessen the disparity must be approached on many levels and through collaborative efforts. Last year, the office held a roundtable discussion on racial disparities in kidney transplantation. The expert panel included David Wirsing, a state representative long involved in transplantation issues; the manager of a local dialysis center; the Director of patient services for the National Kidney Foundation of Illinois; and Dr. Clive Callendar, the Chief of Transplant Surgery at Howard University and founder of the Minority Organ and Tissue Transplantation Project (MOTTEP).
In January of this year, our Philadelphia OCR regional office co-sponsored a health disparities forum with the University of Pittsburgh's Center for Minority Health to reach out to health care providers throughout Pennsylvania.
Last fall and summer, our Atlanta OCR regional office, in collaboration with the Georgia State Office for Minority Health, conducted an active outreach and education program to disseminate information regarding the impact of HIV/AIDS on the African American Community. These sessions were held at several area historically Black colleges and universities, including Savannah State College, Albany State College, Fort Valley State College, and Paine College.
OCR's efforts in New York, Chicago, Philadelphia, and Atlanta serve as models for bringing together diverse stakeholders -- health care providers, academics, and community and faith-based organizations -- to address racial and ethnic disparities issues, while increasing overall awareness of civil rights laws and their applicability in health care settings.
During the past year-and-a half, OCR's ten regional offices have engaged in close to 400 outreach and public education activities on health disparities. In FY 2002, each regional office has committed to continue and expand its health disparities activities. Examples of these activities include:
COMPLIANCE REVIEWS AND COMPLAINT INVESTIGATIONS
OCR also has been successful in remedying individual and systemic health disparities through our complaint investigations and compliance reviews of health care providers. In more than 60 percent of such compliance reviews during the past year and-a-half, OCR's involvement resulted in substantial corrective actions and changes in policies and practices to ensure nondiscriminatory access to quality of health care services. For example, as a result of compliance reviews of major hospitals throughout Idaho last year, OCR entered into ten resolution agreements designed to address access to care barriers faced by limited English proficient patients. Among other things, the hospitals agreed to assess the language needs of their service areas, make individualized assessments of the language needs of each patient identified as in need of language assistance, and conduct staff training on how to address the needs of language minority groups.
In an example of a complaint in which remedying a failure to serve an individual had more broadly systemic results, OCR investigated and resolved an allegation filed by an African American woman who claimed that she had been denied services by a pharmacist in a national drugstore franchise because of her race. The drugstore chain agreed to post non-discrimination notices in each of the approximately 2,800 stores nation-wide for six months and the notice was appended to an advertising supplement that was periodically mailed to approximately 25,000,000 people.
In another case, the mother of a child who used a wheelchair and was fed through a gastrostomy tube, requiring frequent suctioning to clear his breathing passages, filed a complaint with OCR after losing home care services because the home health care agency had decided not to provide services to certain neighborhoods after 1:00 PM "for safety reasons." The residents of those neighborhoods happened to be minorities. Following our investigation, the agency agreed to discontinue its policy and to make determinations about services on a case-by-case basis, including consultation with law enforcement and public housing authorities.
ENSURING EFFECTIVE COMMUNICATION IN HEALTH CARE
As I noted earlier, the Commonwealth Survey and the IOM report stress the importance of direct and clear communication between the patient and the health care provider as an actual and perceived factor among some national origin groups. OCR has taken a lead in promoting effective communication between health care providers and their patients who are limited English proficient. OCR has been actively engaged in outreach and education to promote linguistically accessible services as a means to prevent or ameliorate disparities.
In the course of its outreach and enforcement activities, OCR has found that persons who lack proficiency in English frequently may be unable to obtain information about accessing basic health care services. As a result, such an individual may be turned away, forced to wait for substantial periods of time, use family members or friends not competent in medical terminology to interpret, or forced to make repeated visits to the provider's office until an interpreter is available to assist in conducting the interview. To provide health care providers with practical information about their legal obligations and how to comply with Title VI of the Civil Rights Act of 1964, and its implementing regulations, we published guidance in August 2000, on "Title VI Prohibition Against National Origin Discrimination As it Affects Persons with Limited English Proficiency." Pursuant to a Department of Justice memorandum issued on October 26, 2001, HHS republished the Guidance on February 1, 2002 seeking additional public comment on specific issues. OCR is working with the Department to review the comments we received to determine whether any modifications are needed to ensure unimpeded access to quality health care. Under the direction of the Department of Justice, we also have linked forces with 30 other federal agencies to form an Interagency LEP working group to share best practices and collaborate on public education and compliance activities. HHS hosted the second meeting of this group last month.
OUTREACH TO AND COLLABORATION WITH NATIVE AMERICANS
Our efforts to address racial and ethnic health disparities have also extended to Native Americans. In the past year, OCR HQ and regional staff have participated in more than 20 public education and outreach activities on health disparities for Native Americans throughout the United States, in collaboration with tribes, other HHS components, and state and local agencies. As you can see from this slide, our outreach has spanned across the United States from Atlanta to Boston, throughout the midwest, and into the southwestern regions.
In addition to outreach, education, technical assistance and compliance activities, OCR is working to improve data collection throughout the Department and within OCR. For example, OCR is working with the Centers for Medicare and Medicaid Services and others within the Department to ensure the collection of racial and ethnic data on children enrolled in SCHIP programs. We are also in the process of upgrading our own data systems to improve our capacity to collect and report data on the race, ethnicity and primary language of complainants in accordance with OMB guidelines.
PLANNED FUTURE ACTIVITIES
OCR's FY 2003 budget submitted to Congress includes expanding our health disparities work into new, critical areas. For example, we will be working to address two recent critical Surgeon reports on health disparities: The Surgeon General's August 2001 report on Mental Health: Culture, Race and Ethnicity and the Surgeon General's January 2002 report on Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation.
OCR will conduct public education and awareness activities about civil rights issues in mental health that may serve as barriers to access and receipt of quality mental health services. Our work in this area will include efforts to ensure nondiscriminatory access to Medicaid managed care and State Children's Health Insurance Program (SCHIP) mental health benefits as well as access to TANF-funded mental health programs designed to provide supportive services to women and children. These activities will intersect with OCR's existing work on Title VI access issues, racial and ethnic health disparities, managed care, and TANF as well as support a new focus on children and nondiscrimination. We also are addressing disparities in services for persons with mental retardation and other disabilities as part of our overall work to support the President's New Freedom Initiative.
In closing, OCR is fully committed to fulfilling our critical legal responsibilities to monitor compliance and enforce the law. We also are committed to prevention and believe that collaboration and partnership with our federal, state and local governmental and community partners are key to eliminating racial and ethnic health disparities. We have forged collaborations with health care providers to address policies, practices or procedures that may contribute to racial and ethnic disparities, developed effective public awareness and education campaigns, and committed resources to compliance reviews and complaint investigations of key health care providers. We have a strong commitment to working directly with the beneficiaries of federal financial assistance -- members of racial, ethnic and national origin minority groups, community and faith-based organizations, so that they can share their perspectives on this important health care issue. Our success will only be as good as our innovative collaborative efforts to identify and address all of the factors that contribute to disparities. We know that much work remains to be done -- and we are hopeful that through our combined efforts of prevention, collaboration, and enforcement, we will continue to make progress to ensure that all people regardless of race, color or national origin have equal access to quality health care for themselves and their families.
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Last revised: April 30, 2002