|
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.
TABULAR OR GRAPHIC MATERIAL SET FORTH AT THIS POINT IS NOT
DISPLAYABLE
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.
|
