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State Legislation and Disparities

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Kala Ladenheim and Rachel Groman

Excerpted from: Kala Ladenheim and Rachel Groman, State Legislative Activities Related to Elimination of Health  Disparities, 31 Journal of Health Politics, Policy and Law 153- 181, 153-155, 166 (February, 2006)

A national effort to address disparities conducted through state public health efforts, Healthy People 2010 has documented great variation from state to state (U.S. Department of Health and Human Services [U.S. DHHS] 1998, 2002). The role of state policies in this variation, and how such policies are set, remains unknown, although as Timothy Waidmann and Shruti Rajan (2000) point out, better understanding such variation can improve state policy making. Studies that consider state actions that can address disparities have focused more on program design than on legislative decisions. Stephen Morin and colleagues (2002) identified a mix of federal and state-imposed barriers to Medicaid eligibility that created obstacles to services for certain groups. Jill Rosenthal, Neva Kaye, and Lynda Flowers (2002), in the most comprehensive inventory to date, explored state strategies with an emphasis on administrative actions and concluded that states could influence policy in this area as purchasers, through licensure requirements, and by broad public health mandates aimed at closing gaps.

Interest in how state legislative action affects health policy appears to be rising. Recent examples include Hahn et al. 1999 on tobacco policy; Kaskie, Knight, and Liebig 2001 on state dementia laws; Oliver 1999 and Morrisey and Jensen 1997 on insurance; Lear, Eichner, and Koppelman 1999 on the growth of school-based health centers; and Alexander and Succi 1996, Potter and Longest 1994, and Weissert, Knott, and Stieber 1994 on various provider issues. We believe this is the first such study of state legislative actions on this issue.

During the 2001 legislative session, when all the states were in session, a total of 147,470 bills were introduced in the fifty state legislatures. Of these bills, 22,822 (16 percent) were related to health. Over the years an average of 11 percent of bills are eventually enacted into law. The proportion directly addressing disparities, rarely breaking out of the single digits, is minuscule.

This project looked at three types of records of legislative action: codified laws (statutes), full texts of enacted legislation (laws), and full texts of proposed legislation (bills). Statutes alone may not be a good gauge of the level of state legislative action related to health equality, although legislative activity plays an important role in advancing policy in this area. Much of the legislative language about health disparities in any given year does not appear in the state codes because the language related to minorities is in a preamble to authorizing legislation, directs an agency or legislative body to conduct a study, or is in the specifics of appropriations to existing agencies. Beyond the difference between bills and codes, it is often not possible to determine (from legislative language alone) whether rectifying disparities was a motive for legislation and in fact the same legislation may be understood differently by different participants in a debate.

Health programs may treat everyone the same or treat some groups differently. When they treat some differently, it is generally to try to compensate for disparities of one kind or another, specifying the differences that are of concern. Rather than summarize the universe of health legislation that would have an impact on minorities--in effect, all legislation--this project summarized legislation that named race or ethnicity (or things that were convincingly tied to these--sickle cell, culture, and language) and health as things of concern. To be counted, legislation should explicitly mention a disparity-related or minority-health objective, such as improving the health of an identified minority group or attempting to equalize treatment among groups. Elements for inclusion include a health or health care objective and either (1) a mention of one or more target groups or general reference to ethnic, racial, or linguistic differences or (2) language that suggests the measure is directed at a problem characterized by intergroup differences.
.. . .

Trends in Legislation through 2000

We examined the pace and content of state enactments in three time periods: pre-1990, 1990-1995, and 1996-2002 (table 1). A variety of innovative strategies have been implemented by states to reduce health disparities outlined in Healthy People 2000 (U.S. DHHS 2002), ranging from programs that focus on preventing, detecting, and treating race-specific diseases such as sickle-cell anemia to those that recruit minorities into the field of health and encourage medical professionals to work in medically underserved areas.

. . . Table Omitted

From 1990 to 1997, the most common state laws dealing with minority health issues created offices of minority health and promoted minority participation in medical education. We found that disparity-related state legislation over the most recent five years dealt with the issue in a wide variety of ways, including measures related to provider recruitment, culturally competent care, disease-specific programs targeted at certain groups, and support and charges to offices of minority health. A number of specific disease conditions were identified, reflecting the content of the aims of Healthy People 2010 (U.S. DHHS 1998) and in contrast with laws related to sickle-cell disorder, which dominated minority population and disease-specific laws prior to 1990 and through the 1990s. An interesting minor recent trend, not previously noted, is state laws related to minority elders. To our surprise, and despite some creative searching, we did not find legislation focusing exclusively on Hispanic minorities, although recent measures citing cultural and linguistic competence may be especially likely to affect this group.

Office of Minority Health-Related Legislation

Prior to 2001, the most common type of legislation directed at reducing disparities in minority health was that which created an Office of Minority Health (OMH). Thirty-six states have established an agency resembling an OMH, whether it be designated an Office of Multicultural Health (California), Minority Health Commission (Arkansas, Louisiana, South Carolina, Florida, Ohio), Interagency State Council on Black and Minority Affairs(Indiana), Minority Health Promotion Program (Rhode Island), or Center for Minority Health Services (Illinois)(Rosenthal, Kaye, and Flowers 2002). Just over half of these programs were created through some sort of administrative action, about one-third were established through legislation, and the remainder were founded through a variety of grants (see fig. 1; ibid.: 13). We identified fifteen laws in fifteen states dealing directly with these offices, of which eight were enacted between 1996 and 2001.

Some states went a step beyond simply establishing an OMH. Tennessee, for example, established a permanent fund for minority health research and education in its state treasury. Louisiana has a Disparity Commission within its Department of Health that, among other things, collects data related to disparities in death rates. The goal is to identify gaps in health care, improve services, and raise awareness of factors that contribute to disparities among races, sexes, and ages. Nebraska requires the establishment of a satellite OMH in each congressional district to coordinate and administer state policy regarding minority health. Each office must implement a minority health initiative--with a focus on infant mortality, cardiovascular disease, obesity, diabetes, and asthma--in counties with a minority population of at least 5 percent of the county's total population.

Many annual appropriation measures included funding for previously established OMHs. A multiyear budget analysis that would show trends in spending for these offices was not in the scope of this project. In the second year of the biennium, which is typically a budget year, appropriations bills are a significant portion of the bills that mention minority health. We did not include continuing appropriations that did not reflect initiation of a policy, but some budget measures described programs. New York's 2000 health appropriations act (S6404z), for example, included funding for the state's OMH in the form of competitive grants. The grants, specific in their purpose, allowed the state to work with local jurisdictions to determine the direction of OMH activities. Those eligible for the funds included programs that offer outreach and education to minority communities concerning the availability of clinical drug trials, as well as programs that provide specialized AIDS-related services to minority populations.

Other states have shown their commitment to studying health disparities without actually establishing an OMH. For example, Kentucky's Cabinet for Health Services is mandated to report at least biennially on the special health needs of the minority population, as compared to the population at large. The report must contain an overview of the health status and morbidity rates of minority Kentuckians and make recommendations to meet the identified health needs of the minority population. Also unique to Kentucky is its Early Childhood Development Authority which, upon its creation, was mandated to oversee activities to reduce the disparity in maternal and child health status among selected populations. Kentucky's recent legislative history reveals that health disparities can still be addressed quite thoroughly in the absence of an OMH.

Race-Specific and Disease-Specific Legislation

Disease- and population-specific legislation was the earliest activity we found and continues to be an important approach. Before 1990, the most frequently identified statutes pertained to sickle-cell anemia, which mostly affects African Americans. Laws addressing this condition date back as early as 1974. Twelve states, including three in the 2001-2002 session, enacted laws specific to the management of sickle-cell disease. Most of these established programs within the Department of Health that screen for the disease or its traits. About half of these also provide treatment for the victim, coupled with counseling and education about the disease.

In the 1990s, laws focused on making care available and affordable. The Louisiana legislature passed a 1993 measure that went so far as to require that a minimum of seven regionalized sickle-cell clinics be established in the state. Kansas provides financial assistance to people with the disease who are unable to afford treatment or care, and California has authorized demonstration projects to determine the best ways to prevent and test for the disease, provide counseling, evaluate social consequences of being a carrier, and provide training in genetic counseling. Additionally, Alabama and Louisiana have laws prohibiting health or disability insurance carriers from denying coverage on the basis of a sickle-cell anemia diagnosis. Louisiana further prohibits rate discrimination, as well. Recent legislation, by contrast, addresses the knowledge needs of caregivers and the public. Illinois started a public information campaign on sickle-cell anemia for health care personnel in 2000, while a 2002 South Carolina law provides basic education to the general public to eradicate the stigma associated with the disease.

A number of recent disease-specific laws focus on the 2010 target areas. These include Tennessee's Strike Out Stroke pilot project passed in 1999, which emphasized the need to raise awareness about cardiovascular disease and hypertension in minority communities. Maryland also took a new approach by mandating that its Office of Oral Health establish an African American oral cancer initiative to promote screening, early diagnosis, and treatment of oral cancer in African American men. Because this information is captured from databases that include bills (which include explanatory language) rather than statutes (which are the source for information on earlier enactments), we may be overstating the contrast with the earlier period. It is not always clear in this legislation whether the policy is explicitly targeting minorities and is expected to reduce disparities or whether the disparity-related language is included in the preamble of a public health measure as part of an overall effort to coordinate with the Healthy People 2010 programs.

In addition to legislation addressing specific health conditions in African Americans, three states (Florida, Virginia, Tennessee) enacted laws between 1996 and 2001 that established commissions to study the health status and needs of African Americans. Native Americans (four laws) followed African Americans as the most frequently mentioned group in enacted legislation. In this count, we attempted to exclude legislation mentioning the Indian Health Service or funding for specific providers and only count measures that asserted a disparity-related objective. However, this category may be undercounted since we did not conduct separate searches by names of individual tribes. Minnesota, Nebraska, and Wisconsin have enacted projects to address specific problem areas in the field of Native American health, such as infant mortality and tuberculosis. Arizona offered an original approach by requiring that its state Child Fatality Review Team have on its staff a maternal/child health specialist to specifically treat Native Americans, as well as various tribal representatives. California modified the definition of small employer under the Health Insurance Plan of California to include any federally recognized California Indian tribal government that purchases health coverage for eligible members under specified circumstances, opening this state-sponsored insurance product to this population.
Despite the fact that Hispanics surpassed African Americans in the 2000 census, which reported nearly 40 million Hispanics in the United States, we had little success in finding enacted laws aimed specifically at increasing the health status of the Hispanic population. The only result of a Lexis-Nexis search using the search words Hispanic, Latino, and Latina in conjunction with health language was an appropriation by the Massachusetts Legislature to create the Latinas y Ninos Center (n.d.), a twelve-month residential treatment program for Latina women recovering from alcohol and drug addiction. The paucity of legislation may reflect legislative strategy rather than negligence. Hispanics were often grouped with other minority populations in the text of or preamble to general minority health bills, perhaps reflecting the politics of balancing minority groups. In the last two years, five bills introduced in three states focused on the issue of cultural or linguistic competence, a problem that (while first championed by African American advocates) is particularly pertinent to this population. Both of these types of legislation are discussed later in this essay.

Finally, we noted a small but interesting group of state laws that addresses the elderly minority population. Given that the elderly population, in general, is expected to increase dramatically over the next fifteen years, this approach to dealing with health disparities will most likely become increasingly popular among state legislatures. Current initiatives include Kentucky's Cabinet for Families and Children, which provides services to meet the needs of minority elderly, including outreach programs providing information about available programs to address health and social problems. The Illinois Center for Minority Health coordinates with the Department on Aging and Department of Public Aid to meet the needs of minority senior citizens. Finally, Missouri established a twenty-member Commission on the Special Health, Psychological, and Social Needs of Minority Older Individuals under the Division of Aging.

Minority Health Care Professionals Legislation

The third most frequently enacted category of legislation aimed to recruit minority and culturally diverse health care personnel, with nine states (four between 1996 and 2001) enacting a dozen laws (six between 1996 and 2001) with this as their sole purpose. The strategies outlined in these pieces of legislation are multifaceted, with some programs aiming to encourage minority students to pursue a career in health and others attempting to place minorities and other health professionals in medically underserved areas where their skills are most needed. Some states have enacted programs that aim to do both. New Jersey, for instance, authorized grants to increase minority participation in medical education, and Louisiana and Michigan authorized a special permanent fund in their treasuries to be used to provide loans and scholarships to minority students enrolled in medical schools and nursing programs. Other legislative successes, such as California's Health Professions Career Opportunity Program, not only recruit minorities into the field, but also encourage them to work in medically underserved areas in the state upon completion of their training. A Florida law created a family practice physician retention advisory committee to develop a plan for recruiting minority physicians into family practice residency programs and to retain and place minority physicians in local communities. Additionally, Minnesota, Tennessee, and Virginia made use of federal Area Health Education Center Program grants, which promote health careers and access to primary care for medically underserved populations through community academic partnerships. In these three states, each program is explicitly charged to carry out recruitment and health career awareness programs among minority and other students in medically underserved areas. Virginia created a nurse practitioner/nurse midwife scholarship program that provides assistance to students who agree to practice in Virginia's underserved areas. Expanding the scope of medical professionals covered under state assistance programs can be a constructive way to help fill the void of providers in medically underserved areas.

Florida takes a different approach to recruit, place, and retain staff. Florida law states that any entity contracting with the Agency for Health Care Administration to provide health care services to Medicaid recipients must submit a plan demonstrating the entity's ability to recruit and retain minority health care providers. This creative approach facilitates the pairing of minority patients with minority providers who can best understand their needs. Additionally, Florida law created a seven-member family practice physician retention advisory committee that is responsible for developing a program, in conjunction with teaching hospitals, for recruiting minority physicians into family practice residency programs. Also interesting to note is Illinois' Center for Minority Health Services. Rather than attempt to recruit new providers, the center provides consultation, technical assistance, training programs, and reference materials to service providers and other entities currently serving minority populations. Maryland passed legislation in 2000 that, although not explicit enough to be included in our datasets, is still unique in its approach. Maryland's S328 calls for a review of state laws and hospital policies regarding health care credentialing decisions, recognizing that credentialing organizations have a profound impact on the ability of minority physicians to practice medicine.

The various strategies used by states under this category highlight the need for a diversified health care workforce. Expanding health care access to underserved populations requires a combination of measures that focus not only on the patient, but also on those providing the care. A culturally diverse health care workforce tends to stimulate research in areas of society that are often neglected and diversifies the pool of decision makers responsible for meeting minority health care needs. Legislators were emphatic that this is more than a socioeconomic gap. According to Maryland state senator Paula Hollinger, disparities are "not just about poor people .... Well educated black women don't get offered the same options or treatments when they've got insurance as white women. That reflects bias in medical training, and it's happening to non-poor minority folks" (McDonough 2003: 2).

Miscellaneous Health Disparity Legislation

Other legislative successes worth mentioning stand out because of their unique approach to assessing health disparities. Wisconsin, for example, requires the Department of Health and Family Services to conduct statewide hearings on health issues of economically disadvantaged minority group members in the state. In another creative endeavor, the state requires managed care plans to develop an access plan to meet the needs, with respect to covered benefits, of its enrollees who are members of underserved populations. If a significant number of enrollees customarily use languages other than English, the managed care plan must provide access to a translation service. California offers another innovative approach by requiring that women and members of minority groups are appropriately included as subjects of health research projects carried out by state agencies and the University of California. While the inclusion of underrepresented groups in health research is an idea that is still in its infancy, California is helping to bring to light a policy whose importance is greatly understated.

Legislative Initiatives (2001-2002)

The review of previously enacted legislation allows us to track trends in state efforts. Pending bills, recent legislative failures, and newly enacted laws provide a glimpse at the future. The bills include initiatives that have not reached critical mass, yet that hint at future trends and emerging interests in health disparities. Pending legislation may also reveal funding priorities in language within budget bills, details that are obscured in statutes. In the 2001-2002 legislative session, the most common bills called for studies of disparities (eight bills in seven states) and appropriations for identifiable minority health initiatives (seven in six states). Enacted laws include two California measures related to cultural competence and one (of three proposals in three states) minority health awareness month.

The National Policy Context

State policy concerns related to minority health both anticipate and echo federal attention to the issue. The U.S. Department of Health and Human Services, Office of Minority Health was created in 1985. Since then, the majority of states have created state offices of minority health. Several national efforts stimulated recent state legislative activity.

In 1998, the Advisory Committee on Minority Health was created within the U.S. Department of Health and Human Services under the Health Professions Education Partnerships Act (P.L. 105-392). Two years later, President Clinton signed the Minority Health and Health Disparities Research and Education Act of 2000 (P.L. 106-525), which elevated the Office of Research on Minority Health at the National Institutes of Health (created in 1990) to a National Center on Minority Health and Health Disparities. Public Law 106-525 also included provisions aimed at expanding research and data collection on health disparities and increasing the number of minority researchers (P.L. 525, 2000). In January 2002, the Department of Health and Human Services released a report that presented national trends in racial- and ethnic-specific rates for seventeen health status indicators during the 1990s as part of Healthy People 2000 (U.S. DHHS 2001). Perhaps the most influential case for the severity and importance of disparities was made by the Institute of Medicine's March 2002 report on its project, Understanding and Eliminating Racial and Ethnic Disparities in Healthcare (Smedley, Stith, and Nelson 2003).

General Health Disparity Legislation

In keeping with the widening understanding of the nature of disparities and groups at risk, most health disparities legislation introduced or passed in the first eighteen months of the 2001-2002 session was general. For example, Maryland's SB451 (signed into law April 2002; chap. 162) authorizes the State Health Care Foundation to provide financial support to programs that eliminate health care disparities associated with poverty. Under this classification of general legislation, we also included appropriation bills, such as New Jersey's AB2324, which appropriates funds to establish the Eliminating Health Disparities Initiative in the Office of Minority and Multicultural Health, and Minnesota's health and human services appropriations bill SF4 (enacted June 2001), which appropriates funds for a variety of programs under the heading, "Eliminating Health Disparities."

The data collected for the Healthy People initiatives have been a stimulus for actions that encompass the many dimensions of disparate health care raised in Healthy People 2010 (U.S. DHHS 1998). Minnesota state representative Fran Bradley described how a sobering look at one state's statistics led the legislature to enact a historic Eliminating Health Care Disparities initiative. The legislature reviewed the state's public health statistics and found that, although state-level data were excellent, there were glaring disparities. "We are the best place to live in the US, ... [y]et we found that the Hispanic 15-19 year old birth rate was six times that of whites. We found the incidence of low birth weight among African Americans was more than twice that of whites. Down through the list, it was overwhelming" (McDonough 2003: 4). The reaction was immediate and bipartisan. "The Republican-controlled House was as bothered as anybody" (ibid.). The initiative built in strong measurement and called for a 50 percent improvement by 2010 on key measures. "We have eight measures from diabetes to coronary disease to other things where the indicators were clear that communities of color were worse off" (ibid.: 5).

Some of the funding measures represent continued efforts rather than new initiatives. Other bills identify and assign responsibility for state initiatives in this area to a specific entity such as the newly created tobacco settlement foundations. Rather than creating new entities, some measures define and assign roles to existing authorities. For example, North Carolina's SB391, which directs North Carolina's Department of Health and Human Services to make recommendations on ways to eliminate health disparities in health care, must be applauded for simply bringing the issue to the table.

Raising the Profile on Disparities

The problem of health disparities is still a fairly new issue whose significance may not yet be realized by all lawmakers. During phone interviews with sponsors of current disparity-related legislation, several legislators claimed they had introduced such a bill as a way to inform their peers of the severity and immediacy of this problem. Two of these sponsors (Representative Ruth Balser, Massachusetts; Senator James Forrester, North Carolina) were health care providers by profession. A family practice physician and a psychologist, these lawmakers mentioned that they had witnessed disparities in health status and access to care firsthand or understood the severity of the issue as a result of being an active member of that professional community. Senator Forrester, sponsor of SB391, is a physician with a degree in public health practicing in what he labeled "a middle class, somewhat affluent district" (Forrester 2002). Although his patients are not minorities and most have access to adequate health care, he stated, "I am aware of the divide, especially in North Carolina, through my field of work" (ibid.). Senator Forrester also professed that he felt this type of bill, which asks for a study to take place, is a great first step in educating other legislators who may be unaware of this problem. "After the problem is put on the table with evidence," he stated, "then other lawmakers will have more of an understanding and be more willing to support funding for that cause" (ibid.).

But some legislatures ignore the issue despite documented disparities. Mississippi Representative Frances Fredericks contrasted state house indifference with the Office of Minority Health, which published a booklet, Mississippi's Plan to Eliminate Racial and Ethnic Health Care Disparities. "A lot of work has been done through the Department of Health, but not through the legislative process. In Mississippi, our leading cause of death is cardiovascular disease and we have a high incidence of diabetes, but you still don't have the legislature coming out with some way to address these problems" (McDonough 2003: 5).

Cultural and Linguistic Competence Legislation

The barriers imposed by language and cultural differences have received recent attention from policy researchers (Betancourt, Green, and Carrillo 2002; Smedley, Stith, and Nelson 2003) and federal agencies including the Office of Civil Rights, which is enforcing requirements related to access for persons with limited English proficiency (LEP). On June 12, 2002, Executive Order 13166, Improving Access to Services for Persons with Limited English Proficiency, was signed by President Bush, establishing LEP standards nationwide (U.S. Department of Justice 2002). The decision stated that recipients of federal assistance have a responsibility to ensure meaningful access to their programs and activities by persons with LEP. States have been using both regulation and statutory action to bring their programs into compliance with this standard.

In addition to broader bills, more specific pieces have recently been introduced by state legislatures, with those targeting the issue of cultural and linguistic competence appearing to be the most numerous. These bills, aimed at reducing language barriers as a way to increase access to care among minorities, were found using the search words cultural competence, linguistic competence, and limited English proficiency. This increasingly popular strategy illustrates that states have many alternatives available as they attempt to close gaps in health care. It also indicates that the issue of access to care, alone, can be attacked on many fronts. This formerly unexplored method of breaking down the walls that currently prevent many minorities from accessing care is of extraordinary significance to the Hispanic population. Hispanics now represent the largest minority group in the United States. Hispanics are also disproportionately likely to not speak English as a first language. Linguistic access is also an issue with recent immigrant groups such as Southeast Asian refugees, newcomers from the former Soviet Union and the Balkans, and immigrants from the horn of Africa.

California's legislature, alone, passed three different bills under this category from 2000 to 2002. This comes as no surprise considering the fact that more than 32 percent of California's population is Hispanic, compared to 12 percent of the total U.S. population (U.S. Census Bureau n.d.). In September 2000, California's chap. 802 established a Task Force on Culturally and Linguistically Competent Physicians and Dentists. Among other things, the task force was mandated to develop recommendations for a continuing education program that includes language proficiency standards of a foreign language; the goal being to maximize linguistic and cultural competency standards among health care providers. In October 2001, chap. 509 was signed into law, authorizing a physician to report to the Medical Board of California on his or her cultural background and foreign language proficiency. Within the text of this bill lies recognition that California is experiencing an access to health care crisis and that adding to the crisis is a state population that is growing in cultural and linguistic diversity. As such, the bill goes on to state that California lacks data on the cultural and linguistic background of licensed physicians. Then, in September 2002, A2739, which had been pending since the previous February, was enrolled. A2739 requires managed care plans contracting with the state under its Medi-Cal program, as well as health care plans contracting with the state through its Healthy Family program, to implement plans to provide culturally and linguistically appropriate services for recipients.

Maryland, too, passed a law (chap. 141; Senator Sfikas, D-MD) on April 25, 2002, requiring state agencies to provide interpreters and translate government forms to ensure equal access to public services for people with limited English proficiency. The Department of Health and Mental Hygiene's 2003 compliance date is one of the earliest among Maryland's state agencies (Ramirez 2002).

New York and Massachusetts also introduced similar bills in 2001, but neither made it out of committee. New York's AB3181/SB412 would have changed state requirements for medical schools to provide formal training in cultural competence. Massachusetts' H2536 petitioned that insurance companies provide culturally competent and linguistically appropriate mental health care services. When asked about H2536, sponsor Representative Balser (D-MA) affirmed her belief that there is not yet a universal agreement on the definition of "cultural competency" in health care (all quotations in this paragraph from Balser 2002). Instead, she believes that "linguistically appropriate" provisions are more understandable and thus more likely to succeed since, by definition, they entitle people to treatment in their primary language. It is interesting to note that H2536 was cosponsored by members of three caucuses-- the Mental Health Caucus, the Black Caucus, and the Hispanic Caucus. It is also worth noting that Representative Balser is a psychologist by profession and, as such, she stated, "In mental health care it is particularly important to understand the cultural context of the patient. There is a lot of misdiagnosis due to lack of cultural knowledge." When asked why she felt her bill failed, she referred to both opposition on the part of the insurance industry and a possible stigma that may surround this issue. "Identification of racial and ethnic issues is something that needs special attention," she stated. "This might feel like affirmative action to some people." As for future efforts, Representative Balser hopes to file a bill that would at least direct the Massachusetts legislature to study the issue of cultural competence in health care. In order for this effort to succeed, Representative Balser emphasized the need for, "a real study [including] a commission within state agencies to look at the issue of cultural competence."

With the U.S. Department of Justice's June 18, 2002, release of the LEP Policy Guidance Document, aimed at recipients of federal funding who are required to comply with Executive Order 13166, it is likely that we will see an increase in cultural, or at least linguistic, competence legislation among states. New Jersey continued to wrestle with cultural competency legislation, continuing to hear a measure introduced in 1999 and reconsidered as A2297 on May 9, 2002. A2297 would mandate that the State Board of Medical Examiners add certain requirements to physician training. For instance, each college of medicine in the state would have to include instruction in cultural competency to address the problem of race and gender-based disparities in medical treatment decisions. Under this proposal, medical students could not graduate until they fulfilled this requirement. The bill also requires that medical schools offer cultural competency training for continuing education credits. A2297 was referred to committee and was revived again in the next legislative session. Illinois' legislature also has a bill pending (SB2076), which, among other things, would require that pamphlets be published to help seniors comply with directions for proper use of prescription drugs. The pamphlets are to be published in both English and Spanish.

Disease- and Population-Specific Legislation

In the 2001-2002 session, there were not many disease-specific bills relating to minority health. Florida's H1417/S1934, which actually died in committee in 2002, would have required the Department of Health to expand Florida's Birth Defects Registry to include sickle-cell anemia. New Jersey currently has a bill pending (S1306/A1895) that would address the unmet need for cardiac surgery services among minority and indigent populations in a specific county. Union, a very densely populated county, currently has no cardiac surgery program. This bill would require the commissioner to grant a license for the provision of cardiac surgery services to a preexisting acute care facility in Union County. Although not included in our data set, Hawaii passed legislation (H2393) in 2000 mandating that health insurers cover outpatient diabetes self-management training and supplies. The legislation recognizes that Native Hawaiians and Asians experience a risk of developing diabetes that is twice that of the general U.S. population and that Native Hawaiians, compared to other groups in the state, had the highest mortality rate due to diabetes from 1989 to 1991. However, the legislation does not direct action to any specific population.

There were also only a few race-specific pieces introduced this year or last. Maryland legislators introduced a bill (HB1270) in 2002, similar to one that had failed in 2000 (HB1424/SB9019). HB1270 would require the director of the Mental Hygiene Administration to designate a liaison for minority mental health services that would, among other things, study the relationship between substance abuse and mental illness in the African American community. Hawaii lawmakers introduced health legislation in 2002 that stands out because of its unique target population. In H2682, native Hawaiian, Southeast Asian, Filipino, and Pacific Islander children are cited as suffering disproportionately from unmet dental needs. As a result, this bill aims to alleviate that problem by requiring that all dental students receiving state funds to support their education serve in federally qualified health centers or in other underserved communities.

While the lack of disease- or race-specific health legislation in the past two years may seem odd, it does not necessarily suggest a decline in interest in minority health issues among lawmakers. "Disparities is a useful reframing of the issue of minority health," Massachusetts state senator Jarrett Barrios explained (McDonough 2002: 2). "The word 'minority' is not relevant. In the disparities legislation I recently filed, I had the drafters rewrite the bill to take the word 'minorities' out." More comprehensive bills aim to eliminate disparities in health care across groups. "We're not trying to vindicate the legacy of the civil rights movement. I'm interested in closing disparities," continued Barrios. Moving away from group-specific language can attract more support as well. "Politically, the focus on 'disparities' is absolutely helpful" (ibid.).
Tobacco Money for Minority Health

Another creative avenue worth mentioning is legislation that uses tobacco restitution funds to implement minority health programs. Bills of this type illustrate the valuable role alternative money sources can play in states experiencing deficits, but wishing to close gaps in minority health. Massachusetts, for instance, passed an appropriation act in July 2002 (H5300, Sec. 4590-0250) that reauthorizes the use of tobacco settlement funds for the state's smoking prevention and cessation programs under the condition that these programs include grants to evaluate issues unique to minority communities. The law also calls for increased efforts and media campaigns by health and community agencies in minority communities that demonstrate a high rate of tobacco use. An attempt was also made by Pennsylvania legislators in 2001 to use tobacco money to establish an Office of Minority Health and fund a variety of other minority health initiatives. However, the enacted version, Act No. 77, did not include any of the minority health language.

We did not include in the tally one appropriation measure that listed disparity-related activities as an option but did not ensure funding. Colorado passed a law (CO S71) in 2000 that appropriated tobacco settlement funds to smoking prevention and cessation programs. The act went on to list projects that would be eligible for the funds, including "research to develop and improve more effective and culturally appropriate community ... health care programs related to tobacco or substance abuse, especially within specific ethnic and low-income communities" (SB71, Sect. 11). Unlike the aforementioned Massachusetts law, this law offers no guarantee that such projects will be funded.

Miscellaneous Legislation

This category contains legislation that recognizes the existence of health disparities, but does not actually address the issue explicitly in the measure. Two bills worth mentioning are California's SCR35 and Texas's SB1456. SCR35, chaptered on September 7, 2001, proclaims the month of September as Children's Health Month. The bill text states, "Approximately 30 percent of Native American children, 30 percent of Latino children, 10 percent of African American children, 10 percent of Asian Pacific Islander children, and 10 percent of non-Latino white children in California are uninsured" (State of California 2001). Although this bill does not target minorities, it remarks on the problems they face. Texas's SB1456, as introduced, uses a similar tactic. The bill's purpose is to establish a Pediatric Diabetes Working Group in Texas's Department of Health. However, minorities are only mentioned in the Findings section of the bill, which states, "Children who are of Hispanic, African American or Native American descent are disproportionately affected by diabetes than the general population" (State of Texas 2001). The legislation does not offer a solution to the problem, but by recognizing its existence, the legislation directs the attention of the work group.

Implications and Recommendations

Symbolic Action and Agenda Creation
In addition to allocating resources and setting policy, legislators interviewed noted the importance of the public debate around disparity created when such legislation was considered, even when it was not enacted. Studies are sometimes a delaying and deferring tactic, but they also may be part of the process of building an agenda. Lawmakers mentioned that raising this issue served to educate their fellow legislators, health care providers, and the public on issues of disparity. As Arkansas state representative Steve Jones described his role, "Sometimes it's an exposure thing--people haven't been exposed to other cultures and people .... We have a responsibility to point out differences in how they're treated and expect to be treated and how we get treated." In a state with great distances between groups, Jones says, "We have to draw the difference and show the disparities .... There are parts of Arkansas where nobody lives who is African American .... We like to believe everybody will be treated right. But that's not always the case" (McDonough 2003: 12).

A number of bills dealing with public health concerns included mentions of minorities and their health problems in their preambles. Without access to the full history or the debate surrounding a measure, it is not always clear whether this is routine language included in all public health measures, a mechanism for focusing an initiative without creating illegally discriminatory entitlements, or a mixture of these.

Placing disparity language in preambles may be viewed in two conflicting ways: as leadership providing pointed direction to executive branch implementers of public health spending or as leadership reflecting a relatively weak commitment to public policy around disparities, lip service with no real commitment. Furthermore, some opposition to legislation that specifies groups or conditions is based on a universalist preference for comprehensive programs and initiatives. Legislation that affirmatively identifies a skill or activity that will enable access for a group--cultural competence, linguistic access--without singling out and specifying any group, avoids the label of reverse discrimination and the politically charged debate around affirmative action that older measures related to disparities might trigger if debated today.

Budget-Conscious Opportunities

In the context of current state budget problems, a focus on disparities may be interpreted in two contradictory ways as well. On the one hand, it may reflect a commitment to maintaining needed services to groups most likely to suffer as a result of their group membership. On the other hand, such language may be a cover for reductions in the scope of programs that previously had a broader mandate. New allocations of funds from tobacco settlements to offices of minority health may reflect shifts from general fund lines rather than new activities. The exceptionally straightened condition of state budgets in 2002 and 2003 resulted in multiple emergency budget sessions as revenue targets continued to slump, and budgetary analysis of funding for these programs, which would be required to interpret these actions, will not be feasible except in retrospect.

One paradoxical effect of budget crises actually may be to facilitate the passage of disparity-focused legislation, as long as new state investment is not required. If improved efficiency, effectiveness, and quality in the use of limited resources can be demonstrated, targeting programs to disparately affected minorities becomes a politically attractive strategy. "It's costing the state money," Senator Roscoe Dixon urged (McDonough 2003: 2). "It's causing lost productivity. So we have to show them how this is a challenge to the state of Tennessee. It costs money when people die before their time. It costs our Medicaid program. It costs the economy" (ibid.).

To the extent that raising the profile of this issue is itself an important legislative function, as bill sponsors assert, such debates (even when there is little net impact on allocation of dollars) may change the environment in which programmatic and private sector decisions are made. For example, in the next year, national quality standards incorporating measures of disparity as quality indicators will likely be released. Representative Jones described the impact of these reports on the climate for disparity legislation in Arkansas. "We took data regarding hypertension, high blood pressure, diabetes, and stroke and used it to argue why we should take a portion of the tobacco settlement to target minority health. We focused on the fact that we were on the bottom in so many lists" (McDonough 2003: 14). Equating reductions in inequality with quality, whether through mandates, recommendations, or reporting and monitoring requirements, can create an environment of heightened concern for equality across the health sector. "We tried to sell to our colleagues, who are mostly not African American, that when we improve these numbers we improve all Arkansas' numbers" (ibid.).

Legislative Process, Not Product: Methodological Issues for Further Research

Should the paucity of statutes dealing with disparities be taken as a lack of interest in the issue among lawmakers? Not necessarily. State legislative environment--including the norms for executive versus legislative action, the style of discourse within a legislative body, and the legislative role in the budgetary process--vary to a great extent. Each of these elements will affect the extent to which language related to disparities is codified in law. Much of the typical state policy action from year to year is not legislative, even though it may be influenced by legislative proposals and preferences. Some important actions may be carried out in the nonprofit sector or at the substate level. Legislative support of any of these activities may be invisible in an aggregated or undescriptive budget line. Indiana has supported such activities for a decade, according to Representative Charlie Brown, with legislation to create an interagency council on black and minority health, the formation of the Indiana Minority Health Coalition, and twelve coalitions around the state charged with looking at health care delivery for racial minorities, especially in rural areas (ibid.: 4).

The differing racial, ethnic, and institutional environments of states also affect how actions can be interpreted. The following section gives some examples of how state variation makes interpretation difficult.

Problems of Definition

This project focuses on projects with a compensatory/restorative rather than simply a distributive justice objective; the assumption is that fair distribution of current resources is a sine qua non for legislation to be neutral vis-à-vis disparities. Therefore, although they may reflect a change from the status quo, unless a disparity objective is named we did not count legislation dealing with uniform or race-blind distributions. Two examples illustrate why we chose this conservative approach, which will inevitably miss some programs aimed at reducing disparities.
• An argument is made that, since diabetes is especially problematic for several minority groups, all diabetes programs should be designated as addressing disparities. However, Vermont, a state with virtually no minorities, enacts a strong diabetes program. How should this program be categorized? If one sets it aside because it will have little impact on minorities, how should the Office of Minority health in Vermont be construed?
• A community health program serving a minority community is funded. Similar programs are funded throughout the state, at similar per capita levels, without regard to the makeup of the community served. Is this a minority health/disparities program or is it an equitably distributed resource?

Another problem of definition is which disparities to count. Geographic, socioeconomic, and educational disparities may all come into play. An Arizona senator noted, "Issues of health need have not broken down based on minority categories. They break down along poverty and rural lines. We have a disproportionate number of Hispanics in rural areas and poor communities. There is more interest in getting services to rural and underserved areas rather than helping any specific minority population" (McDonough 2003: 11). Legislators commented that tying initiatives to more broadly defined groups helped them succeed in chambers where the majority was not interested in minority health.

How could this be improved without imposing onerous data collection demands? Is there a definable characteristic that might help distinguish disparities-conscious distribution from other distributive objectives? One approach may be to look for programs that track and monitor the distribution or impacts in terms of differences. We have included projects that explicitly seek to categorize or collect data according to possible disparately affected groups. However, such data collection may not rise to the level of legislative language or may be articulated in a single crosscutting requirement that would not easily surface through the sorts of health-specific searches conducted here.

Problems of Interpretation

Some activities that affect disfavored groups are either not labeled as such or the labeling is fugitive and does not appear in the final legislative product. The use of disparity language is likely to be shaped by the culture and discourse of a chamber. Here are some examples of the disjunction between legislative language and action and some concerns about measurement that each raises.

Hidden agenda. The administration (or a member) may propose legislation with an intent to address disparities yet without any mention of disparities in legislation. Without attending sessions where legislation was prepared, which could even be closed planning or caucus sessions, this would not be known and it would not be evident on the face of the legislation. Representative Jones (AR) claimed that "In a state like Arkansas, it's helpful to say, 'disenfranchised' or 'unprivileged' because it creates a larger net to catch more people. I found out poor white people have the same health issues that poor African Americans and Hispanics have, so we focus it in that fashion. It's been more successful. And it helps get some of those initiatives passed in our legislature. It's ... just language" (McDonough 2003: 11).

Unintended consequence. Legislation may have a disparate effect on a population, either positive or negative, with none (or few) of the people involved aware or concerned about its impacts in those terms. For example, a law related to vending machines in schools might disproportionately affect minority communities with few fund-raising options.

Split opinion. Some people may strongly feel a piece of legislation has a disparate impact, while others believe that is not the case or may have unrelated reasons for approving an item. For example, breast and cervical cancer treatment act approval or Sudden Infant Death Syndrome (SIDS) monitoring and education may be introduced by someone who knows they are important to a minority community, but are taken up as a generally good cause. How do you poll a split opinion? How many does it take to define such legislation as motivated by concern for disparities? State representative Barbara Boyd of Alabama passed a heart and stroke resolution that grew out of her own experience, shaped by a sense of disparities but without any reference to them. "After my mother had a stroke, I began to pay attention to statistics about why minorities had more strokes and heart attacks. I contacted the National Stroke Association, who gave information to my district. I decided we needed statewide legislation. I approached it as simply for people; I knew whom it would help the most, but I didn't point that out" (ibid.: 13). By contrast, Tennessee state senator Roscoe believes that the racial component of disparities should be pointed out. "We need a better way to develop a sense of urgency about this widening gap between the health status of blacks and whites. I guess they're saying, 'We don't have a problem giving it to you if you just say 'people.' But take that 'African American' off of it"' (ibid.: 2).

Squeaky wheel. A member of a legislative body may be particularly articulate in framing proposed legislation in terms of racial or ethnic impacts. For example, State Children's Health Insurance Program (SCHIP) funding would be defined in terms of impacts on minorities. General assistance budgets and public health monitoring are other examples of public funding or regulation of health care that may be framed in terms of disparities, but need not be. Similar legislation in another state without such a member would not be framed in this way. "We have a special challenge fighting this battle along the race line. It's difficult because my colleagues say, 'Why does that have to be black and white, why isn't this just people?' Well, it is people --it's just that in my state, more black people are dying than white people" (ibid.).

Standard pork. A member gets something in his or her district. The member (or district) is a member of a minority group. Other nonminorities also get things in their districts. Are the same goods disparity-related when they go to minority-represented districts and not when they go to other districts? Are the only allocation schemes that count ones that explicitly name minority groups or should distributions based on other rules, including geography and political quid pro quo, that affect minority groups differentially be considered disparity-addressing legislation? How would the differential impact be ascertained?
Concluding Thoughts

All these concerns point to the need to validate legislative and other policy measures. Such validation must start with agreement as to the objective of legislative policy: Restorative justice or equal distribution? Changed attitudes among legislators about disparities? Preferred use of disparity and equality frames in defining public health concerns? Demonstrated intent to reduce disparities as measured in budgets? Or intent to ignore any differences and treat all people in the same way? If the legislative role is chiefly one of framing, can legislative impacts result from studies and debates, absent explicitly disparity-focused enactments? This review of legislation adds its perspective to definitional and measurement issues that the project as a whole must address.

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Contact Information:
Professor Vernellia R. Randall
Institute on Race, Health Care and the Law
The University of Dayton School of Law
300 College Park 
Dayton, OH 45469-2772
Email: randall@udayton.edu


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