1. Psychiatric Conditions: Bias and Shame Prior to engaging in this discussion, read Chapters 7 and 8 in your text as well as the articles by Clark, et al. (2013) and Cummins (2013).
cmober
86141322.pdf
Addressing Public Stigma and Disparities Among Persons With Mental Illness: The Role of Federal Policy
Stigma against mental ill-
ness is a complex construct
with affective, cognitive, and
behavioral components. Be-
yond its symbolic value,
federal law can only directly
address one component of
stigma: discrimination.
This article reviews three
landmark antidiscrimination
laws that expanded protec-
tions over time for individ-
uals with mental illness.
Despite these legislative ad-
vances, protections are still
not uniform for all subpopu-
lations with mental illness.
Furthermore, multiple com-
ponents of stigma (e.g., prej-
udice) are beyond the reach
of legislation, as demon-
strated by the phenomenon
of label avoidance; individ-
uals may not seek protection
from discrimination because
of fear of the stigma that
may ensue after disclosing
their mental illness.
To yield the greatest im-
provements, antidiscrimina-
tion laws must be coupled
with antistigma programs
that directly address other
components of stigma. (Am
J Public Health. Published
online ahead of print March
14,2013:e1–e5.doi:10.2105/
AJPH.2013.301224)
Janet R. Cummings, PhD, Stephen M. Lucas, MPH, and Benjamin G. Druss, MD, MPH
INDIVIDUALS WITH MENTAL
illness experience disparities in health care, education, and em- ployment outcomes, and the stigma associated with mental ill- ness is a central contributing factor to these disparities.1---6 Stigma is a complex construct with four social-cognitive processes (i.e., cues, stereotypes, prejudice, and discrimination) that may be directed by others toward those with mental illness (i.e., public stigma) and may occur within an individual with mental illness (i.e., self-stigma). To examine the role of federal policy in improving disparities resulting from the stigma process, we first provide a brief overview of stigma and highlight how federal legislation only directly addresses one of its components—discrimination resulting from public stigma. Next, we provide an overview of three landmark antidiscrimination laws in health care (Mental Health Parity and Addiction Equity Act [MHPAEA]7 of 2008), education (Education for All Handicapped Children Act [EAHCA]8 of 1975), and employment (Americans with Disabilities Act [ADA]9 of 1990) and highlight three common fea- tures they share (1) expanded protections over time for persons with mental illness, (2) differential protections for subgroups with mental illness, and (3) implemen- tation challenges resulting from label avoidance that undermine the ability of these laws to yield better outcomes. Finally, we high- light how antidiscrimination legis- lation must be complemented by approaches that directly target
other components of the stigma process (e.g., prejudice) to yield the greatest improvement in outcomes for this population.
STIGMA COMPONENT TARGETED BY FEDERAL LEGISLATION
According to Corrigan,2 stigma comprises four social-cognitive processes—cues, stereotypes, prej- udice, and discrimination—that can manifest as public stigma and self-stigma; the former comprises stigma processes that occur in the social environment toward those with mental illness, whereas the latter comprises stigma processes that occur within an individual with mental illness. First, cues such as psychiatric symptoms, social- skills deficits, physical appearance, and labels (e.g. clinical diagnoses) may suggest a person has mental illness. Cues may trigger cognitive associations with stereotypes that are negative (i.e., knowledge structures about a marked group) related to mental illness. Com- monly held stereotypes against those with mental illness include incompetence and a perception that these individuals are more likely to engage in violence and other criminal behavior.10---12 Peo- ple (either outsiders or those with mental illness) can believe in these known stereotypes or reject them; if they endorse the stereotypes, they develop prejudice against those with mental illness—a cogni- tive and affective response. Dis- crimination is the behavioral manifestation of prejudice that occurs when those with or those
believed to have mental illness are differentially treated; discrimina- tion can occur by others toward those with mental illness, or within an individual with mental illness (i.e. self-discrimination).
Low labor force participation among those with mental illness provides an illustrative example of how multiple elements of the stigma process contribute to poor outcomes for this population (Fig- ure 1). For example, stigma might lead to low labor force participa- tion if employers discriminate during the hiring process (i.e., dis- crimination resulting from public stigma), if individuals with mental illness do not apply for a job be- cause they believe they are in- competent (i.e., self-discrimination resulting from self-prejudice), or if individuals with mental illness do not apply because they expect to be stereotyped and rejected by the employer (i.e., self-discrimination resulting from fear of public stigma).2,13 Although federal poli- cies can neither legislate changes in beliefs and attitudes about mental illness nor directly prevent self-discriminatory behaviors, they can directly address discrimina- tory behaviors by others (e.g., employers) toward those with mental illness (Figure 1).14,15
Moreover, these laws also hold tremendous symbolic value and the potential to indirectly improve other components of public and self-stigma (e.g., stereotypes and prejudice) by affirming that those with mental illness should not face discrimination.15 For these rea- sons, antidiscrimination legislation comprises an important federal
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Published online ahead of print March 14, 2013 | American Journal of Public Health Cummings et al. | Peer Reviewed | Commentary | e1
policy mechanism to address poor health care, education, and em- ployment outcomes among those with mental illness resulting from the stigma process.
LANDMARK LEGISLATION FOR MENTAL ILLNESS DISCRIMINATION
Three landmark laws address discrimination against those with mental illness within the domains of health care, education, and em- ployment. Supporters framed the importance of each law as a civil rights issue before enactment, and the passage of each law was hailed as a civil rights victory with im- portant symbolism for the affected populations. Following enactment, the evolution and implementation of these laws have shared several
other common features. First, leg- islative protections afforded to those with mental illness have been clarified and expanded over time in all three domains. Second, despite these expansions, protec- tions offered to those with mental illness are not uniform for all subgroups with specific types of mental illness. Finally, the effec- tiveness of each piece of legislation is undermined by label avoidance, in that some individuals do not seek protection under these laws out of fear of becoming publically identified as having mental illness, and consequently, becoming a target of stigma.
Expanded Protections Over
Time
Mental Health Parity and Addiction Equity Act of 2008.
Health insurance coverage for mental health and substance use disorder treatment has historically been less generous than coverage for medical care,16 and advocates have long contended that these differences in insurance coverage constitute discrimination.17 The Mental Health Parity Act (MHPA)18
of 1996 was the first federal law that addressed parity between mental health and medical ser- vices. Yet, it was extremely limited in the protections it offered be- cause it only required parity for annual and lifetime dollar limits in large private group health plans (i.e., plans with at least 50 em- ployees) that already offered mental health benefits. This law was supplanted by the more com- prehensive, landmark MHPAEA of 2008,7 which required large
private group health plans (i.e., plans with at least 50 employees) that offer mental health or sub- stance use disorder insurance coverage to offer these benefits at parity with medical or surgical benefits in annual and lifetime dollar limits, financial requirements (e.g., deductibles, copayments, co- insurance), and treatment limita- tions (e.g., number of visits and days of coverage). Although the MHPAEA is still limited in that it only applies to large group health plans and does not require these plans to offer any mental health or substance use disorder coverage, the law provided a foundation for further expansion of mental health and substance use disorder parity by the Patient Protection and Affordable Care Act (PPACA) of 2010. The PPACA contains provisions requiring mental health and substance use disorder cov- erage to be included in essential benefits packages for insurance plans offered in the state health insurance exchanges and in Medicaid plans serving enrollees who are moving into the program through expanded eligibility crite- ria. Furthermore, the PPACA re- quires mental health and sub- stance use disorder coverage offered in these plans to either partially comply (in the case of plans serving new Medicaid en- rollees) or fully comply (in the case of state health insurance exchange plans) with existing federal parity regulations established by the MHPAEA.19,20
Education for All Handicapped Children Act of 1975. Legislation addressing discrimination against those with disabilities in school settings offers protections to stu- dents with mental health---related disabilities. Before the passage of the EAHCA of 1975,8 Congress found that four million children with disabilities were either
Public Stigma
Cues
Stereotypes
Prejudice
Discrimination
Self-Stigma
Cues
Stereotypes
Prejudice
Discrimination
Federal Legislation
Legal Effect
Symbolic Effect
Poor Employment Outcomes
(e.g., Low Labor Force Participation Rates)
FIGURE 1—Role of federal legislation in improving poor employment outcomes resulting from mental
health stigma.
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e2 | Commentary | Peer Reviewed | Cummings et al. American Journal of Public Health | Published online ahead of print March 14, 2013
excluded from public school ser- vices or served inappropriately.21
The EAHCA of 1975 granted federal funding for states that provide a “free appropriate public education” for disabled students, including students classified as having a severe emotional distur- bance. For students who qualified, the legislation required schools to provide education alongside non- disabled peers to the maximum extent appropriate (i.e., in the least restrictive environment possible), an individualized education pro- gram, and any “related services” (e.g., physical therapy and psy- chological counseling) necessary for the student to benefit from special education.22,23
In 1990, the EAHCA of 1975 was renamed the Individuals with Disabilities in Education Act (IDEA), and it has been amended multiple times since then with a trend toward increased protec- tions for children with mental health---related disabilities.21 For example, coverage has been ex- tended to children of younger ages (e.g., toddlers and preschoolers), and to children with types of mental health disorders other than SED; these include autism, trau- matic brain injury, and attention deficit hyperactivity disorder. The IDEA of 1990 also expanded the definition of “related services” that schools must provide for eli- gible students by including social work services and rehabilitative counseling.21
Americans With Disabilities Act of 1990. Legislation addressing workplace discrimination against those with disabilities also pro- vides protection for those with psychiatric disabilities just as the EAHCA does for school-based discrimination. Title 1 of the ADA of 19909 prohibits employers with at least 15 employees from discriminating against disabled
persons in job application proce- dures, hiring, advancement, dis- charge, compensation, and other employment-related conditions. The statute defines a disability as a mental or physical impairment that substantially limits one or more “major life activities.” Fur- thermore, it requires covered entities to make “reasonable ac- commodations” to persons with disabilities (i.e., changes to the workplace to allow a person to perform their job), unless these accommodations impose “undue hardship” on the employer (i.e., accommodation is too expensive or disruptive for the business).
In 1997, the US Equal Em- ployment Opportunity Commis- sion (EEOC) released enforcement guidelines to clarify how the ADA applies to psychiatric disabilities. These guidelines included a de- scription of what constitutes “mental impairment,” examples of major life activities that may be affected by mental impairment, and examples of reasonable ac- commodations that can be pro- vided to persons with psychiatric disabilities.24 However, ambigui- ties in these guidelines remained, and researchers documented con- tinued challenges faced by those with psychiatric disabilities when seeking protection under the ADA.25,26 For example, claimants had difficulty convincing courts that cognitive processes, such as concentrating and thinking, con- stituted major life activities.25 Ad- ditionally, the Supreme Court ruled that workers cannot be classified as disabled if their condition is con- trolled by mitigating measures (e.g., medication),27,28 which directly af- fected workers with mental illness whose symptoms were controlled by psychotropic medications. The ADA Amendments Act of 200829
sought to clarify these issues by including an expanded list of major
life activities that could be affected by disability and a provision that mitigating measures (e.g., medica- tions) should not be considered when assessing whether someone has a disability, thereby overriding the Supreme Court rulings.
Protections Not Uniform for
All Subgroups
Although antidiscrimination protections for those with mental illness have become more expan- sive over time, these protections are not uniform for all subgroups with different types of mental ill- ness because of (1) explicit lan- guage about inclusion and exclu- sion criteria in the statute or implementation rules, (2) vague statutory language that yields var- iation in the interpretation about which groups qualify for protec- tion, and (3) incentives created by the legislation that affect specific groups differently. The ADA pro- vides an example of how explicit language in the statute yields dif- ferential protection for subgroups with mental health or substance use disorders. Although the EEOC guidelines allow individuals with most diagnoses recognized by the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edi- tion30 to seek protection under the ADA, some diagnoses are explic- itly excluded, such as abuse of or dependence on illicit drugs.24
The MHPAEA and the EAHCA both contain statutory language that is open to interpretation as to which groups qualify for protec- tion. For example, the MHPAEA allows insurers to determine which mental health or substance use disorder diagnoses are cov- ered by the health insurance plan. Because this discretion could re- sult in the systematic exclusion of specific diagnoses from health insurance plans, the MHPAEA also requires the Government
Accounting Office to monitor trends in mental health and sub- stance use disorder insurance coverage and whether systematic exclusions have occurred. When considering the EAHCA, re- searchers have noted that there is enormous variation in the inter- pretation of the severe emotional disturbance criteria across school districts and states.31 Children may qualify for special education services if they meet one or more of five inclusion criteria for severe emotional disturbance laid out in the legislation, such as an inability to learn that cannot be explained by intellectual, sensory, or health factors32; however, the legislation also excludes children who are classified as socially maladjusted, unless they also have an emotional disturbance. Social maladjustment, however, has never been defined in federal guidelines, and the lack of a definition has led to confusion and controversy.33 In some school districts, the social maladjustment clause has been interpreted in a manner that excludes youths from special education services if they have conduct disorder or opposi- tional defiance disorder.31
Finally, the ADA provides an example of how incentives created by legislation could potentially exacerbate discrimination for some populations with mental ill- ness. Although the ADA prohibits employers from asking about mental illness during the job ap- plication process, some employers could attempt to screen out (by using cues such as affect, commu- nication skills, or gaps in work history) those with mental illness because of what must be offered to disabled applicants once they are hired.34 Therefore, the ADA could be more likely to protect to those with less severe types of mental illness who already have a job or who are able to hide their
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Published online ahead of print March 14, 2013 | American Journal of Public Health Cummings et al. | Peer Reviewed | Commentary | e3
mental illness when applying for a job. This phenomenon also illus- trates how stigmatizers may be- come more careful and perpetuate discriminatory behavior even if antidiscrimination laws have been implemented.
Effectiveness Undermined by
Label Avoidance
Each of the previously de- scribed laws is limited in its ability to improve disparities resulting from stigma because there are multiple components of the stigma process that are beyond the reach of federal legislation. As an exam- ple, label avoidance undermines the effectiveness of antidiscrimi- nation laws because individuals with mental illness might not seek protection from discrimination out of fear of becoming more publi- cally identified as having mental illness and the stigma that may ensue. In health care, research in- dicates that fear of receiving an official psychiatric diagnosis is a major barrier to seeking help for mental health and substance use disorder treatment.2 Thus, pro- viding insurance parity through the MHPAEA cannot compensate for those who avoid treatment, regardless of whether they have insurance coverage. Similarly, an- tidiscrimination legislation in edu- cation and employment settings cannot protect disabled children whose parents are resistant to having their child labeled with a psychiatric disability, or job ap- plicants and employees who are reluctant to disclose their mental health status to an employer.6,34
Although the extent to which label avoidance occurs is difficult to ascertain, there is reason to be- lieve its impact is of consequence. The MHPAEA took effect for most insurance plans in January 2010 and has not yet been systemati- cally evaluated; however, studies
evaluating the implementation of mental health and substance use disorder parity in the Federal Employees Health Benefits Pro- gram found that parity had little effect on overall mental health or substance use disorder treatment rates and overall spending.35,36
Although this outcome could be caused by several factors, label avoidance provided one possible explanation for why more indi- viduals did not seek services de- spite having received more gener- ous mental health or substance use disorder insurance coverage. Similarly, data suggested that chil- dren with severe emotional dis- turbance might be underidentified and underserved in special edu- cation programs. Approximately one percent of school-age children were identified with severe emo- tional disturbance for the pur- poses of receiving special educa- tion services, although national estimates of severe emotional dis- turbance were at least five times higher.4,6,37 Finally, researchers have noted that employment- related outcomes remain subopti- mal for those with mental illness as evidenced by the low rate of labor force participation of this population resulting from under- employment, unemployment, or being out of the labor force.26
Although label avoidance might limit the number who seek pro- tection from discrimination, these laws provide a foundation to im- prove adverse outcomes resulting from the stigma process by offer- ing protection against discrimina- tion that would not otherwise be afforded. These laws might also symbolically help reduce stigma in their shared assertion that those with mental illness should not face discrimination. However, to yield the greatest improvements in outcomes for those with mental illness, antidiscrimination laws
must be complemented by other approaches that directly target other components of the stigma process—including stereotypes, prejudice, and self-discriminatory behavior.38,39
As an example, antistigma pro- grams that target attitudes and behavioral intentions toward those with mental illness directly address components of public stigma that are beyond the reach of legislation. The literature con- cerning these programs is vast and described more in depth else- where.40---42 Briefly, however, these programs target the cogni- tive and affective components of public stigma by implementing one of three strategies at a popu- lation level or in specific environ- ments (e.g., employment settings): (1) education that challenges in- accurate stereotypes, (2) increas- ing interpersonal contact with in- dividuals who have mental illness, and (3) presentation of stigmatiz- ing behavior as a moral injus- tice.43,44 Notably, a recent meta- analysis found that antistigma programs implementing education or contact strategies significantly improved stigmatizing attitudes and behavioral intentions toward those with mental illness.40 This study provided promising evi- dence that these programs could complement antidiscrimination legislation when seeking to reduce stigma against mental illness.
CONCLUSIONS
Extant federal laws directly ad- dress one component of the com- plex stigma process—discrimination resulting from public stigma—and provide an important foundation to improve disparities in health care, education, and employment out- comes for those with mental illness that result from the stigma process. The protections offered by these
laws against discriminatory behav- ior have expanded over time, and they may indirectly improve other stigma components (e.g., prejudice) through their symbolic value. However, these protections are not uniform for all subgroups with mental illness, and future research is needed to assess the differential consequences of each law across subpopulations. Furthermore, there are multiple components of the stigma process that are beyond the reach of federal legislation, and individuals may not seek pro- tection from discrimination out of fear of stigma that may ensue once they become identified as having a mental illness. Bolstering these laws with programs that di- rectly target other components of the stigma process (e.g., stereotypes and prejudice) has the potential to improve health care, education, and employment outcomes for this population. j
About the Authors Janet R. Cummings, Stephen M. Lucas, and Benjamin G. Druss are with the Department of Health Policy and Management, Rollins School of Public Health, Emory University, Atlanta, GA. Correspondence should be sent to Janet R.
Cummings,PhD,DepartmentofHealthPolicy and Management, Rollins School of Public Health, Emory University, 1518 Clifton Road NE, Room 650, Atlanta, GA 30322 (e-mail: [email protected]). Reprints can be ordered at http://www.ajph.org by clicking the “Reprints” link.
This commentary was accepted December 27, 2012.
Contributors J. R. Cummings led the conceptualization, literature review, and drafting of the article. S. M. Lucas assisted with the conceptualization, literature review, and drafting of the article. B. G. Druss assisted with the conceptualization and drafting of the article.
Acknowledgments This work was supported by the National Institute of Mental Health (grant 1K01MH09582301).
We are grateful for the helpful com- ments and suggestions by Neetu Chawla,
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e4 | Commentary | Peer Reviewed | Cummings et al. American Journal of Public Health | Published online ahead of print March 14, 2013
Sarah Blake, Lindsay Allen, and three anonymous reviewers.
Human Participant Protection Institutional review board approval was not required because human participants were not used in this study.
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