PSYCHIATRIC DISABILITIES, EMPLOYMENT, AND THE AMERICANS WITH DISABILITIES ACT

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PSYCHIATRIC DISABILITIES, EMPLOYMENT, AND THE AMERICANS WITH DISABILITIES ACT BACKGROUND PAPER
Office of Technology Assessment

PROJECT STAFF

CLYDE J. BEHNEY
Assistant Director, OTA
Health, Life Sciences & Environment Division

LAURA LEE HALL
Project Director

JACQUELINE T. KELLER
Research Analyst

CHAPTER 1
EXECUTIVE SUMMARY

The Americans with Disabilities Act (ADA) is a watershed in the history of disability rights. It outlaws discrimination against people with disabilities in nearly every domain of public life: employment, transportation, communication, recreational activities, and other accommodations (table 1-1, not available). The ADA enjoyed bipartisan support during its legislative sojourn, winning the President's signature on July 26, 1990. Disability rights advocates celebrated passage of the ADA, hailing it as the single most far-reaching legislation ever enacted against discrimination on the basis of disability. Although the news media had largely ignored previous disability rights legislation, it showered attention on the ADA's passage and its early implementation. Executive branch agencies prepared requisite regulations. Businesses geared up for compliance and voiced concerns about the lack of specific guidance, costs, and the risk of litigation associated with this new law. And a new industry emerged, marketing ADA expertise and technical assistance.

At this early juncture in the law's implementation, it is useful to evaluate current efforts under the ADA in the area of psychiatric disabilities and employment, and to review data that may assist future implementation. This study by the Office of Technology Assessment (OTA) examines these issues, at the request of Senator Edward M. Kennedy (D- Massachusetts), Chairman of the Senate Committee on Labor and Human Resources, and several members of the House Working Group on Mental Illness and Health Issues--Congressman Dave Hobson (R-Ohio), Congresswoman Marcy Kaptur (D-Ohio), Congressman Mike Kopetski (D-Oregon), Congressman Ron Machtley (R-Rhode Island), and Congressman Jim McDermott (D-Washington).

What does the ADA require, in terms of employment? Title I bars employers from discriminating against qualified individuals with disabilities.

No covered entity shall discriminate against a qualified individual with a disability because of the disability of such individual in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment (42 USC 12112).

The ADA's construction of discrimination prohibits, among other things, pre-job offer medical examinations or inquiries or the segregation of employees with disabilities. The most important definition of discrimination is an employer's refusal to make a reasonable accommodation. When requested by a qualified applicant or employee with a disability, an employer must provide a reasonable accommodation unless doing so would impose an undue hardship.

In the first 15 months after the ADA went into effect, 17,355 employment discrimination charges were filed with the U.S. Equal Employment Opportunity Commission (EEOC); nearly 10 percent of these charges--1,710--related to mental disorders (figure 1-1, not available). That mental disorders accounted for the second largest block of charges, as broken down by type of impairment, hints at the importance of the issue of employment to people with psychiatric disabilities. The numerous charges of discrimination that involve mental disorders also signal that employers will not infrequently face issues around psychiatric disability and the ADA.

This assessment has two major goals. The first is to compare the ADA's employment provisions with what is known about mental disorder-based or psychiatric disabilities. The second goal is to review Federal activities relevant to the ADA, employment, and psychiatric disabilities. This chapter summarizes major findings of the subsequent chapters and underscores areas of needed research, guidance, and technical assistance.

Chapter 2 provides an overview of the ADA's requirements and the political and legal antecedents.
Chapter 3 begins with a discussion of the ADA's definition of disability and its potential impact on people with psychiatric disabilities. A description of psychiatric disabilities, their prevalence, common symptoms and treatment, associated functional limitations, and their impact on employment forms the chapter's second section.
Chapter 4 considers many of the crucial requirements of Title I of the ADA, including disclosure, qualification standards, reasonable accommodations, and the issue of direct threat. The ADA's potential impact on mental health benefits is also discussed.
Chapter 5 reviews Federal enforcement, technical assistance, and research support related to the ADA, psychiatric disabilities, and employment.

The ADA represents a significant advance in the history of disability rights. The language of the law, the regulations and guidelines offered by the EEOC, experience with the Rehabilitation Act of 1973, the activities of employers and employees implementing the ADA, and technical assistance efforts all guide the ADA's implementation. Nonetheless, employers and people with psychiatric disabilities have concerns about the law and its implementation. Employers fear the costs of implementation and liability under the law and want more specific guidance as to their responsibilities. People with psychiatric disabilities fear that the language of the law and relevant guidelines often do not speak to their needs. Indeed, OTA concludes that inadequate knowledge of relationships between psychiatric disabilities and employment coupled with few efforts to apply available knowledge to the requirements of the ADA are impediments to the law's implementation. In the absence of further research and guidance, employers and people with psychiatric disabilities are handicapped in exercising their rights and responsibilities under the law.

DEFINING DISABILITY

Drawing from the Rehabilitation Act, the ADA offers a three- pronged definition of disability. Disabled individuals are:

those with a physical or mental impairment that substantially limits one or more major life activities,

those with a record of such an impairment, or

those who are regarded as having such an impairment.

The first prong of the definition asserts that a disability reflects impairment and functional result. This definition limits the ADA's protection to those individuals with significant or non-trivial impairments. The second and third prongs are based on the widely held belief that disability is the result of an impairment and the way others perceive an individual with an impairment. Since mental disorders commonly provoke negative reactions and attitudes -- stigma -- these two prongs of the definition are especially important to people with psychiatric disabilities. Part of the ADA's mandate is to make questions about psychiatric disabilities or mental health history things of the past. Title I of the ADA prohibits employers from asking about disabilities or using any information sources that disclose disability status, including voluntary medical examinations, educational records, prior employment records, billing information from health insurance, and psychological tests, prior to a job offer.

Although the law excludes several specific psychiatric diagnoses, the ADA explicitly includes mental disorders under its protection: "(M)ental impairment mean(s)...

(a)ny mental or psychological disorder, such as... emotional or mental illness" (29 CFR 1630.2(h)(2)). While the EEOC does not rely on a specific diagnostic framework to identify such impairments, many experts contend that as a practical matter, a DSM-III-R (the Diagnostic and Statistical Manual, 3d edition, revised) diagnosis will be necessary, if not sufficient, to meet the ADA definition. Beyond the problems involved in diagnosis, mental disorders present problems related to relapsing and remitting symptoms and impairing side-effects of medications. EEOC staff, in review of an earlier draft of this report, indicated to OTA that the upcoming compliance manual will state that episodic disorders may be ADA disabilities and that side-effects of medications may also be substantially limiting.

Having an impairment does not equal having a disability. Under the ADA, disability is an impairment that "substantially limit(s) one or more of the major life activities." Of the major life activities listed by the EEOC--caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working--working is the only one that really applies to people with psychiatric disabilities, according to some commentators on the ADA. Thus, people with psychiatric disabilities may find themselves in a Catch-22 situation, having to prove that they are substantially limited in working, and yet are qualified for the job--both requirements of the ADA. Others, including the EEOC, note that the list of major life activities provided by the EEOC was not meant to be exhaustive and that mental disorders can limit many of the life activities listed. Importantly, assessment of functioning in mental disorders is not an easy or validated technique (see box 1-1). Additional guidance from the EEOC and others on how mental disorders may limit now specified and other major life activities would help clarify this issue, as would research into functional assessment.

The above discussion begs the question: What activities do mental disorders commonly limit? A variety of sources point to three major areas of functional limitations related to mental disorders and especially relevant to work: problems in social functioning, difficulty concentrating long enough to complete tasks, and problems coping with day-to-day stress.

This OTA report unveiled substantial disagreement among mental health experts as to the relationship between mental disorders and employment outcome. Some say nearly no correlation exists. Others point to data that show a significant correlation between psychopathology, treatment status, and work performance. Such disparate conclusions point out that existing data are obviously incomplete. Studies have used different measures of psychiatric symptomatology, work performance, and vocational outcome. Furthermore, treatment status and individual ability are almost always ignored, as are traditional labor predictors, the type or amount of vocational services that an individual may have received, job history, changes in demand for labor, and demoralization caused by stigma and discrimination. Resolution of how impairment, functional limitation, and work disability relate to one another awaits further research. Nonetheless, some conclusions can be drawn about people with mental disorders and work: Research data support a link between symptoms and work performance. Furthermore, data indicate that treatment may significantly improve work functioning and outcome. Thus, even though treatment may not be mandated by the ADA (see later discussion), access to effective treatment will be paramount for some individuals with mental disorder-based disabilities to maintain employment.

The precise relationships among impairments, functional limitations, and work are obscure and complex. Diagnoses do not predict rehabilitation and employment outcomes except in the broadest terms, and there are wide variations in outcomes within diagnostic groups. Moreover, research data support the contention of many working in this field that treatment itself can sometimes result in other functional impairments. One thing that is clear is that prior work performance remains the best predictor of future work performance.

People with psychiatric disabilities are by no means a homogeneous population. Distinct subgroups exist--ranging from people with the most severe mental disorders and others with less severe conditions--whose members can probably expect different things from the ADA.

People with the most severe mental disorders, clearly covered by the ADA's definition of disability, are unlikely to achieve competitive employment by virtue of the ADA alone. They will require a broad range of educational, psychosocial, and vocational services to prepare them to find and keep jobs; to make them "qualified people with disabilities" as required by the ADA.

Some mental health experts and advocates have suggested that the ADA's impact will be most strongly felt by people with less severe mental disorders, who are already working in a competitive setting. Diagnosable mental disorders and symptoms are common among working-age adults. However, much less is known about the functional limitations of the population with less severe mental disorders, their employment characteristics, accommodation needs, or even who among this group would be covered under the first prong of the ADA's definition of disability, which refers to individuals with serious or nontrivial disabilities. While courts have been expansive in defining mental impairment per se under the Rehabilitation Act, substantially limiting psychiatric impairments have sometimes been defined more restrictively. Unless questions are answered concerning these less severe conditions--Which ones are covered? How can such determinations be made?--the ADA is open to excessive subjectivity in claims of psychiatric disability.

DISCLOSING A PSYCHIATRIC DISABILITY TO AN EMPLOYER

Before an employer provides an accommodation, indeed before the ADA requires that one be provided, an applicant or employee must disclose his or her need. The obvious gateway to disclosure is employee awareness: A person with a disability must know about the ADA's protections before tapping into them. However, a 1993 Harris poll shows that less than 30 percent of people with any disabilities had ever heard or read about the law.

Ignorance of the ADA's provisions is only the first hurdle to disclosure. A person with a psychiatric disability faces what may be a wrenching decision about divulging his or her mental disorder to a current or would-be employer. Lack of awareness that a mental disorder exists or unwillingness to label oneself disabled prevents such self disclosure. Another obstacle to disclosure is the fear that disclosing a condition invites the stigma attached to mental disorders. While attitudes toward mental disorders may be improving, research data continue to show that ignorance and negative attitudes are attached to these conditions. By disclosing a psychiatric disability, an individual risks discrimination, teasing or harassment, isolation, stigmatizing assumptions about his or her ability, and the labeling of all behavior and emotions as pathological. The most pernicious aspect of stigma may be the way in which it undermines an individual's self-esteem and social interactions.

Disclosure may garner benefits for the individual with a disability, however. In addition to invoking the protection of the ADA, in the right circumstances, openly admitting a mental disorder may enhance self-esteem, diminish shame, permit supervisors and coworkers to offer support, and even lengthen job tenure.

After making a decision to disclose a mental disorder, a person also must consider what to disclose, to whom, and when. Legally, an employee need disclose only enough information about his or her disability-related work limitations to support the need for accommodation. There is no legal requirement to disclose prior to the need for an accommodation. However, problems may arise if disclosure occurs only when performance problems have been raised or acted upon by the employer. Little guidance is available to assist people with psychiatric disabilities and their employers during the disclosure process. With the passage of time and the gaining of experience, the researchers, the EEOC, and other organizations may be able to delineate the methods of disclosure that work well, determine the factors that led to their success, and disseminate this information to employers and people with psychiatric disabilities.

ACCOMMODATING QUALIFIED EMPLOYEES WITH DISABILITIES

Title I of the ADA requires employers to provide reasonable accommodations to qualified individuals with disabilities, unless these accommodations pose an undue hardship. As the linchpin of the ADA's antidiscrimination requirement, the identification of effective accommodations for people with psychiatric disabilities becomes critical. Because many people construe a disability as a physical disability, such as being in a wheelchair, accommodations are often viewed in physical terms, such as building a ramp. Some changes to the physical environment, such as a private office or secluded work space, may be useful to those with psychiatric disabilities along with other measures, such as restructuring job tasks or schedules. OTA found that several mental health experts and consumer groups have compiled lists of accommodations. In addition, at least one study surveyed businesses as to the accommodations provided to employees with disabilities under the Rehabilitation Act (figure 1-2, not included). Many of the identified accommodations address the functional limitations commonly associated with psychiatric disabilities: difficulties in concentrating, dealing with stress, and in managing interpersonal interactions (e.g., table 1-2, not included).

Lists of commonly desired or used accommodations, while informative, do not supplant the need for case-by-case assessment. Work places and jobs vary, as do people with psychiatric disabilities, who have a broad range of talents, abilities, and functional limitations. Furthermore, more information and guidance are needed about the cognitive, behavioral, and social requirements of jobs. Also, questions about applicability, effectiveness, preference, cost, and impact on the work place of various accommodations are largely unaddressed.

Commonly suggested accommodations include those that address treatment needs, such as leave for short-term hospitalization. The need for occasional medical leave raises some difficult issues for employers. Based on experience under the Rehabilitation Act, an employer's duty of reasonable accommodation will almost certainly include the duty to tolerate additional, unpaid absences. However, regular and predictable attendance is commonly viewed as a minimum standard of performance. Differentiating between additional absences as a reasonable accommodation and absences as a performance problem will prove challenging to many employers.

While the EEOC does not require employers to provide treatment to employees as a reasonable accommodation, other complicated, controversial, and often unanswered questions concerning treatment are sure to arise. Can employees be required to take medication to maintain their jobs? Can employers monitor medications as a reasonable accommodation for employees? Full discussion of these issues--by mental health and legal experts, employers, and people with psychiatric disabilities--is clearly needed.

Accommodating aberrant or unusual behavior, which is sometimes associated with mental disorders, also raises some difficult issues for employers. Most lists of accommodations prepared by advocates and mental health experts recognize that increased tolerance of unusual behavior is desirable. It is noteworthy that the EEOC's guidance on undue hardship goes beyond dollars: "'Undue hardship' refers to any accommodation that would be unduly costly, extensive, substantial, or disruptive..." However, the EEOC provides no specific guidance on disruptive behavior. Case law under the Rehabilitation Act generally limits the employer's responsibility to accommodate disruptive behavior. While work place training may sensitize supervisors and coworkers to some of these issues, and decrease the stigma against mental disorder, EEOC staff, in comments on an earlier draft of this report, indicated to OTA that it is undecided as to whether coworker training could be a reasonable accommodation. Furthermore, effective work place training, whether required or voluntarily instituted by the employer, is likely to require more than the distribution of pamphlets; a clear work place policy and thoughtful and evaluated educational activities will be vital.

THE ADA'S DIRECT THREAT STANDARD AND PSYCHIATRIC DISABILITY

Under the ADA, employers may include as a qualification standard "a requirement that an individual shall not pose a direct threat in the work place." The EEOC regulations and guidelines procedurally narrowed the definition of direct threat to include only significant risk of substantial and imminent harm, individually and expertly assessed, which cannot be eliminated or reduced by reasonable accommodation.

Clearly, employers and coworkers have legitimate concerns about their safety at the work place. Still, the ADA's reference to direct threat touches a raw nerve among people with psychiatric disabilities, their families, and other advocates. If any one stereotype of mental illness is most prevalent and damaging, it is that of the homicidal maniac. To counter this stereotype, anti-stigma campaigns typically assert that people with mental disorders are no more violent than the average person. However, a variety of data show a link, albeit a modest one, between mental disorders and violent behavior. In particular, data suggest that a small subset of mental disorders--psychotic disorders, indeed specific aspects of psychosis, when a person feels personally threatened or the intrusion of thoughts that can override self-control--are linked to violence. Many studies show, however, that substance abuse and a history of violent behavior are more tightly correlated to violence in people whether or not there is evidence of psychiatric disability.

On the basis of relevant case law and concerns about employer liability, the EEOC broadened the direct threat provision to include not only a threat to others, but also to one's self. For example, an employee with narcolepsy could be at risk of harming him or herself if he or she fell asleep while operating a piece of heavy machinery. Many disability rights advocates decried this interpretation, however, claiming that it went well beyond the law's language and intent. Neither the ADA nor the U.S. Department of Justice Title II regulations mention direct threat to self. Experts and advocates on both sides concede that the issue likely will be decided by the courts.

HEALTH INSURANCE FOR PEOPLE WITH PSYCHIATRIC DISABILITIES

The ADA prohibits discrimination against a qualified individual with a disability in regard to the privileges of employment. Among the most valued privileges of employment is health insurance. Health insurance is also among the most important issues for people with psychiatric disabilities, as limits are commonly placed on mental health benefits. Employer concerns, however, center around cost. The language of the law, its legislative history, and related regulations and guidelines indicate that the writers of the ADA did not intend a complete revision of insurance industry policy and practice. Thus, while the EEOC regulations that implement the ADA ensure that employees with psychiatric disabilities will not be discriminated against if a health plan is offered; it does not mandate access to mental health benefits.

A key question considered by the EEOC in determining the ADA's influence on mental health benefits is: Is disparate treatment of mental disorders by insurance a disability- based disparate treatment? While excluding treatment for a particular mental disorder, such as schizophrenia, would likely lead to an affirmative response to this question, the EEOC's recent guidance, citing case law under section 504 of the Rehabilitation Act, answers a resounding "no" for mental health benefits in general.

[A] feature of some employer provided health insurance plans is a
distinction between the benefits provided for the treatment of
physical conditions on the one hand, and the benefits provided for
the treatment of "mental/nervous" conditions on the other.
Typically, a lower level of benefits is provided for the treatment
of mental/nervous conditions than is provided for the treatment of
physical conditions... Such broad distinctions, which apply to
the treatment of a multitude of dissimilar conditions and which
constrain individuals both with and without disabilities, are not
distinctions based on disability. Consequently, although such
distinctions may have a greater impact on certain individuals with
disabilities, they do not intentionally discriminate on the basis
of disability and do not violate the ADA.

RELEVANT FEDERAL AGENCIES' ACTIVITIES

The ADA requires a variety of Federal activities, including the preparation of implementing regulations and guidelines; the enforcement of the law; the rendering of assistance to those with rights and responsibilities under the law; and the coordination of enforcement and technical assistance among different agencies. Beyond the mandates specified by the ADA itself, the U.S. Congress has required Federal research and service agencies to provide technical assistance and conform services with the ADA's mission. Furthermore, the Federal Government is a principal supporter of disability-related research. OTA surveyed the current efforts of various Federal agencies: the EEOC; the National Institute on Disability and Rehabilitation Research (NIDRR); the Center for Mental Health Services (CMHS); the National Institute of Mental Health (NIMH); and the President's Committee for the Employment of People with Disabilities (President's Committee).

OTA's analysis found the Federal Government's psychiatric disability research enterprise to be sparse and splintered. The principal supporters of research relevant to psychiatric disabilities and employment include NIDRR, CMHS, and NIMH, who together spend approximately 1.3 percent of their total annual budgets on this topic, less than $15 million (table 1-3, not available). As with disability research in general, psychiatric disability is not a priority with any Federal agency, and mechanisms for interagency communication and cooperation lie moribund (box 1-2).

IMPLICATIONS FOR TECHNICAL ASSISTANCE AND RESEARCH

Despite increasing attention on the part of Federal agencies, OTA's analysis indicates that the current level of guidance, technical assistance, and research activities are unlikely to optimally assist employers and people with psychiatric disabilities in implementing the ADA. The need for gathering and distributing information reflects several factors: Psychiatric disabilities are still poorly understood and greatly stigmatized in our society. These conditions can be complex; they can be difficult to assess in an objective fashion, and, with their impact on behavior and social interactions, they sometimes raise difficult issues for employers. Limited Federal resources and the low priority historically assigned to the topic of employment and mental disorders also have constrained research and technical assistance efforts. From the information drawn together in this report, OTA suggests a technical assistance and research agenda.

People with psychiatric disabilities and employers are the ultimate targets of guidance, technical assistance, and education. How can these audiences be reached? Organizations already providing technical assistance to businesses and people with disabilities--including the EEOC, NIDRR (box 1-3), and the National Council on Disabilities--can better incorporate information on psychiatric disabilities. OTA's research highlights several other specific targets:

Mental health advocacy organizations: All mental health advocacy organizations, assert the importance of employment or meaningful activity for people with psychiatric disabilities. Expanding on current ties with consumer groups, the Community Support Program funded by the CMHS, the two Rehabilitation Research and Training Centers supported jointly by NIDRR and the CMHS, the two national consumer self-help centers funded by the CMHS, and the DEPRESSION Awareness, Recognition, and Treatment (D/ART) program funded by NIMH could provide information on the ADA in the form of materials and training sessions.
Employee assistance programs (EAPs) and other human resources professionals: Many mid- and large-sized companies have EAPs and/or other human resource offices, whose responsibilities include health education, the provision of or referral for counseling services, disability management, and ADA implementation. These managers and service providers clearly need and are prime targets for information on psychiatric disabilities. NIDRR, with its grant to the Washington Business Group on Health, and NIMH's D/ART program have already begun targeting these groups. Continued and expanded efforts could build on this foundation.
Private- and state-affiliated care providers: Mental health care providers and advocates, in the private sector and State mental health and protection and advocacy agencies interact with individuals with psychiatric disabilities and they are a potentially useful conduit for information about the ADA. OTA's research reveals a considerable lack of knowledge about the ADA among these care providers and advocates. Federal mental health agencies could develop professional training materials and disseminate them at national and regional meetings sponsored by the Federal Government and professional societies. Also, materials and information could be disseminated in cooperation with State mental health and protection and advocacy agencies through the granting mechanism of the CMHS.

OTA identified another critical target requiring information on psychiatric disabilities: the EEOC field offices. Many lack any information on psychiatric disabilities. Federal mental health agencies, especially the CMHS, could assist the EEOC by providing baseline information and by linking field offices with resources in State and community mental health centers and advocacy groups. These local resources could then provide seminars for the field offices in their communities, and perhaps more importantly, form a network of local experts to which EEOC investigators could turn when specific cases arise.

Several topics identified by this OTA report require further guidance from the EEOC as well as experts, representatives of businesses, and people with psychiatric disabilities:

the impact of and mechanisms for disclosing a psychiatric disability;
the identification of behavioral and social requirements on the job;
accommodating difficult or threatening behavior; and
issues surrounding access to and potential requirement of psychotropic medication or other treatment.

Workshops focused on such topics would be a useful first step. A fair and full exploration of these specific topics would include the perspective and expertise of legal experts and the EEOC, experts in psychiatric disabilities, people with psychiatric disabilities, and employers. The workshop discussions could inform ongoing technical assistance activities as well as official EEOC guidance and research.

Finally, this OTA report identifies many research questions (table 1-4). These questions require different types of research approaches, including:

descriptive research, aimed at ascertaining current issues and practices (e.g., typical approaches to disclosure; the prevalence of violence and mental disorders in the work place);
evaluation studies, which would assess the effectiveness and costs of interventions or procedures (e.g., the impact of coworker education or disclosure; the net costs of accommodating psychiatric disabilities; the effectiveness of stress reduction techniques in accommodating people with psychiatric disabilities); and
hypothesis-driven research aimed at clarifying such issues as the confluence of factors involved in the path from impairment to work disability, and validity of functional assessment techniques.

Clearly, this research agenda falls under the jurisdiction of NIDRR, NIMH, and CMHS. Workable communication among agencies is required to avoid overlap, to assist in collaboration, and to ensure that new information flows among the research agencies as well as to those enforcing the law and providing technical assistance.

CHAPTER 2
THE ADA AND PEOPLE WITH DISABILITIES: AN OVERVIEW

The Americans with Disabilities Act (ADA) is a watershed in the history of disability rights. It outlaws discrimination against people with disabilities in nearly every domain of public life: employment, transportation, communication, recreational activities, and other services (table 2-1, not available). The Act's extension of employment provisions to many people with psychiatric disabilities has captured the attention of mental health advocates (see references 24,32,33,35,42,44,47). Jobs are of particular concern to many people with mental disorders: For most people with severe mental disorders employment remains an elusive goal (see ch. 3). Many employees attempt to keep their current or past mental health problems a secret, for fear of stigma and discrimination. Reflecting the misperceptions, fears, and lack of information about mental disorders as well as the difficult issues sometimes raised by these conditions-- subjectivity of claims, impact on behavior, and social interactions at work--some employers have expressed concerns about the ADA's provisions for employing people with psychiatric disabilities (see reference 27).

This chapter provides an overview of the ADA and some of the factors that led to its passage. First, it summarizes the ADA's provisions, highlighting issues of employment. Second, legal antecedents of the ADA are discussed, illuminating important forebears of the law and their impact on people with psychiatric disabilities. Third, the chapter describes how people with disabilities have influenced disability policy.

THE ADA AND ITS LEGAL ANTECEDENTS

This OTA background paper has proclaimed the ADA "a watershed in the history of disability rights" and "the most far-reaching legislation ever enacted against discrimination of people with disabilities." But what exactly is the ADA? What are its specific provisions? Its history? Philosophical roots? This section considers the law and its forerunners. While not exhaustively detailing disability legislation--many other texts do so (e.g., 57)--the section will highlight information that specifically relates to people with psychiatric disabilities.

Overview of the ADA

The ADA intends sweeping and active antidiscrimination efforts and outcomes. Noting the high and increasing prevalence of disabilities, the lamentable socioeconomic straits of people with these conditions, and the exorbitant costs to society of disabilities, the law sets out:

1. to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities;

2. to provide clear, strong, consistent enforceable standards addressing discrimination against individuals with disabilities;

3. to ensure that the Federal Government plays a central role in enforcing the standards established in this Act on behalf of individuals with disabilities; and

4. to invoke the sweep of congressional authority. . . in order to address the major areas of discrimination faced day-to-day by people with disabilities (42 U.S.C. 12101(b)).

Drawing from the Rehabilitation Act of 1973, the ADA offers a three-pronged definition of disability:

with respect to an individual,

(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

(B) a record of such an impairment; or

While the definition of disability is discussed in detail in the following chapter, a few observations warrant mention here. Although specific conditions are explicitly excluded by the law, including current illegal drug use (box 2-1), the definition is not simply a laundry list of disorders and conditions. Rather, the definition acknowledges the necessity of considering both impairment (e.g., symptoms of a mental disorder; see ch. 3) and functional sequelae. Furthermore, by defining disability in this way, flexibility is maintained, permitting the coverage of disabling conditions that are yet to appear (e.g., a new infectious disease).

The second and third prongs of the definition extend the protection of the law to those who have a history of a substantially limiting impairment or disability, or simply are regarded as such. This language recognizes the discriminatory use of such history or perceptions regardless of an individual's abilities. Because negative attitudes are attached to mental disorders, these prongs of the definition are especially important to them.

Title I of the ADA focuses on employment. It forbids discrimination against qualified people with disabilities in every employment decision, including hiring, advancement, or discharge by employers with 25 or more employees. In July 1994, Title I extends to employers who have 15 or more employees. Key definitions of this section include:

Qualified Individual With a Disability. An employer is not required to hire, promote, or retain any individual with a disability. Rather, the protection of the ADA is afforded to people with disabilities who are qualified for the job. Being qualified for a job often entails relevant training and work experience, factors that may prove problematic for people with psychiatric disabilities that emerged during their education or that disrupted work tenure (see ch. 3). The law defines "qualified individual with a disability" as "an individual with a disability who, with or without reasonable accommodation, can perform the essential functions of the employment position that such person holds or desires." Embedded in this definition are two key terms:

1) "essential functions of the employment position," and

2) "reasonable accommodation."

Essential Functions of the Employment Position. The term "essential functions" can be taken at its face value: essential functions of a job are those functions that are not marginal. Employers are vested with considerable, though not unassailable, power by the ADA in determining essential functions of the job. The Act itself says "consideration shall be given to the employer's judgment as to what functions of a job are essential, and if an employer has prepared a written description before advertising or interviewing applicants for the job, this description shall be considered evidence of the essential functions of the job."

Reasonable Accommodation. Providing a reasonable accommodation is the action required of employers by Title I of the ADA. Appropriate accommodation must be determined on an individual basis. However, the law lists some specific possibilities, including job restructuring, part-time or modified work schedules, or reassignment to a vacant position, all of which may prove useful to people with psychiatric disabilities. The ADA indicates that a reasonable accommodation is required unless it poses an "undue hardship" on the employer. Undue hardship "means an action requiring significant difficulty or expense." Factors, specified by the law, that may make an accommodation an undue hardship include "the nature and cost of the accommodation... the overall financial resources of the facility... [and] the number of persons employed at such facility..." (42 U.S.C. 12111(10)). Undue hardship is not limited to financial difficulty, however, a point especially relevant to psychiatric disabilities; it also refers to any accommodation that would be "unduly. . . extensive, substantial, or disruptive, or that would fundamentally alter the nature or operation of the business."

What constitutes employment discrimination under the ADA? Section 102 of Title I enumerates a variety of practices forbidden by the law--a level of specificity that is uncommon in civil rights law (see reference 15). The ADA deems "not making reasonable accommodations to the known physical or mental limitations of an otherwise qualified individual with a disability [42 U.S.C. 12112(b))" unless the employer can prove the accommodation is an undue hardship. Note that the employer's obligation is to "known" limitations, a critical issue for such "hidden" conditions as psychiatric disabilities. Other expressly prohibited actions include discriminatory:

limitation, segregation, or classification of job applicants or employees on the basis of disability;
contractual arrangements, such as with an organization that provides training or facilities for a meeting; and
use of employment tests or other qualification standards that "screen out" a person with a disability, unless the standard is "job-related and consistent with business necessity." Another common employment practice that is expressly forbidden by the ADA relates to medical examinations and inquiries. Employers can no longer inquire about the medical or disability status of a job applicant. This provision makes illegal such job application questions as: "Have you had a nervous breakdown?" Employers may require, however, medical exams and inquiries after a conditional job offer is made, provided such exams and inquiries are required of all applicants in the job category, and the information is kept confidential. A job offer may be rescinded only if the exclusionary criteria are job-related, consistent with business necessity and reveal that an applicant could not perform an essential function of the job or could not do the job without posing a direct threat to health or safety, even with a reasonable accommodation. In regards to current employees, employers can only require medical examinations or make medical inquiries if they are "job-related and consistent with business necessity."

One qualification standard specifically permitted by the ADA is "the requirement that an individual shall not pose a direct threat to the health or safety of other individuals in the workplace" (42 U.S.C. 12113(b)). This standard requires individualized and nonspeculative determinations of direct threat, not generalizations based on stereotypes or myths. Also, the law requires reasonable accommodation that may eliminate or sufficiently reduce a direct threat. Chapter 4 discusses in further detail the direct-threat standard, the regulations and technical guidance proffered by the Federal Government, as well as information on the relationship between mental disorders and violence.

The ADA's potential impact on employer-provided health insurance fuels much speculation, especially in the mental health field, where benefits are generally more limited (see ch. 4). Title I forbids contractual relationships, including those with "an organization providing fringe benefits to an employee" (42 U.S.C. 12112(b))--that result in discrimination against employees with disabilities; this provision applies to health benefits (see reference 15). In fact, the ADA and its legislative history directly assail discriminatory practices in the area of health care benefits. However, the Act permits "benefit plan(s) that are based on underwriting risks, classifying risks, or administering such risks..." (42 U.S.C. 12201(c)) in accordance with State law (where insured plans are involved), so long as the practice "shall not be used as a subterfuge to evade the purposes of Title I." (See ch. 4 for further discussion of mental health benefits and the ADA.) In addition to preparing regulations and providing technical guidance, the U.S. Equal Employment Opportunity Commission (EEOC) is responsible for enforcing Title I (see table 2-1). Administrative and judicial remedies are identical to those provided for under Title VII of the Civil Rights Act of 1964, as expanded in 1991 (P.L. 102-166). After commencing the EEOC's administrative process, an individual may file a private law suit. Upon proving "a discriminatory practice intentionally engaged in with malice or with reckless indifference to the rights of the aggrieved individual," the accusing party may also recover punitive damages. The Civil Rights Act of 1991 limits the maximal compensatory and punitive damages of $50,000 to $300,000. An employer may avoid damages in an ADA reasonable accommodation case if it can show good faith efforts to accommodate the applicant or employee. Chapter 5 provides a detailed discussion of the EEOC's role in implementing and enforcing Title I of the ADA.

Titles II, III, and IV of the ADA prohibit discrimination in public services (e.g., State-run services or programs, public transportation by commuter rail), privately owned public accommodations (e.g., hotels, theaters, restaurants, etc.), and telecommunications, respectively. These titles leave almost no aspect of public life untouched by the ADA. The ADA charges the U.S. Departments of Justice and Transportation with the enforcement of Title II. The U.S. Department of Justice (DOJ) also has enforcement jurisdiction for Title III. Telecommunications, as covered by Title IV, is in the purview of the Federal Communications Commission. Title II of the ADA also bans employment discrimination on the basis of disability by State and local governments; regulatory and enforcement jurisdiction for this provision lies with the DOJ.

Several Federal authorities are responsible for the sometimes overlapping provisions of the ADA and the Rehabilitation Act. In order to avoid duplication of effort or conflicting standards, the ADA requires executive branch agencies to coordinate their activities. Specifically, the law charges the EEOC, DOJ, and Office of Federal Contract Compliance Programs (in the Department of Labor) to "establish such coordinating mechanisms. . . in regulations implementing this title and Rehabilitation Act of 1973 not later than 18 months after the date of enactment of this Act" (42 U.S.C. 12117(b)). Similarly, DOJ, EEOC, and other agencies must coordinate technical assistance efforts. In addition, the Rehabilitation Act was amended in 1992 to provide that the standards of Title I of the ADA shall apply to complaints of nonaffirmative action employment discrimination under the Rehabilitation Act. Acknowledging the importance of technical assistance to the ADA's success, Title V of the law (which includes "miscellaneous" provisions) also requires EEOC to provide technical assistance manuals and other support for implementation. Chapter 5 discusses technical assistance efforts and resources relevant to employment and psychiatric disabilities.

Federal Policy Antecedents

Federal disability policy did not begin with the ADA. Many other policies and programs affect people with disabilities. Nor is the ADA the first law to offer protection to people with psychiatric disabilities. In fact, most disability efforts explicitly include this population. A review of the Federal building blocks of the ADA (as well as some disability programs in chapter 3) clarifies the legal precedents for this law and shows how people with psychiatric disabilities have fared under them. The analysis leads to the conclusion that psychiatric disabilities do not always have an easy fit with Federal disability policies that cover them.

Legislation attempting to chip away at discrimination against people with disabilities began with the Architectural Barriers Act of 1968 (see references 46,57) (table 2-2, not available). Title V of the Rehabilitation Act of 1973 formed the most important legal antecedent to the ADA. Sections 501 and 503 of the 1973 Act require affirmative action in the hiring and advancement of people with disabilities by the Federal Government and any of its contractors (and, under section 503, subcontractors) receiving over $10,000. These sections forbid Federal executive agencies and Federal contractors and subcontractors from job discrimination against people with disabilities. Section 504 prohibits discrimination or exclusion because of disability in all programs or services offered by recipients of Federal funds and by executive agencies.

The Rehabilitation Act, however, was implemented slowly. Its regulations were finalized only after several years and a court challenge (see reference 49). Many commentators conclude that the impact of the law on people with disabilities was not overwhelming. Studies that evaluated the level of employment of people with disabilities, thefrequency of accommodations, and other measures, lead to the often cited conclusion that while the Act "has unlocked the door for handicapped persons to enter the mainstream of society, it has failed in its goal of opening the door wide" (see reference 51). Analysis argues that sections 503 and 504 have had even less effect on people with psychiatric disabilities, in terms of favorable employment outcomes and decisions stemming from complaints (see references 2,5,36).

The existing research and analyses implicate several factors in the modest effect of the Rehabilitation Act, including: attitudinal barriers toward people with disabilities; less than vigorous enforcement; the relative obscurity of the law (see reference 51); its complexity and limited scope; and the lack of dedicated, Federal leadership (see reference 4). Nevertheless, legislative support for the ADA stemmed from its similarity to the Rehabilitation Act. The ADA was seen as an extension of the Rehabilitation Act to the private sector.

What lessons emerge for ADA enforcement and implementation? Attitudes, especially toward people with psychiatric disabilities, are a formidable barrier (see next section). The law itself, as well as the nature of disability-- especially psychiatric disabilities--are complicated and obscure to many. And enforcement activities, at least of Title I by the EEOC, are limited by budgetary constraints (see ch. 5). Finally, ongoing evaluation of the ADA's impact stands as a critical tool in adapting and improving enforcement and implementation efforts. Without attention to these issues, the ADA's ultimate effect, like the Rehabilitation Act's, may be limited.

The Fair Housing Act (FHA) Amendments of 1988 form another legislative building block for the ADA. The original FHA, passed in 1968, prohibits discrimination in public and private real estate transactions based on race, color, religion, sex, or national origin. After an abortive attempt in 1980, the U.S. Congress successfully extended FHA's coverage to people with disabilities in 1988 (see reference 46). This signaled the first time that an antidiscrimination mandate for people with disabilities was extended into the private sector, an important precedent for the ADA. Indeed, many of the features that appear in the ADA come directly from FHA.

Mental health advocates lauded the FHA amendments, mindful that many people with psychiatric disabilities desperately need housing and suffer considerable discrimination in this arena. However, problems soon arose (see reference 52). One resulted from the subsequent influx of young people with psychiatric disabilities into public housing for the elderly that prompted an outcry from public housing agencies (PHAs). Many of the PHAs urged lawmakers to exclude people with mental disabilities from public housing projects for the elderly. In response to their protests, Congress requested that the U.S. Department of Housing and Urban Development (HUD) reexamine the policies that require housing older people and people with mental disabilities together in public housing projects. Although HUD rejected suggestions to exclude people with mental disabilities from the housing projects, subsequent legislation (P.L. 102-550) did authorize separate housing, a reminder that legislative gains are not immutable. To the knowledge of OTA, people with psychiatric disabilities face no current effort to exclude them from the ADA's protection. However, given the stigma and misunderstanding attached to psychiatric disorders and the complex issues they sometimes raise, a backlash is always possible. Efforts aimed at informing people about ADA implementation may be the best means to forestall exclusion of people with psychiatric disabilities.

THE ROLE OF PEOPLE WITH DISABILITIES

The ADA is the culmination of more than two decades of effort to transform Federal disability policy from one fostering dependence and segregation, to one encouraging independence and integration (see references 49,50,57). While not always the initial agents of public policy changes, people with disabilities, a broad coalition of groups, forced policy reforms by their advocacy, sustained attention, and forceful leadership. They can rightly call the ADA their victory. Without a doubt, people with disabilities will continue to play a pivotal role in the ADA's implementation as well as in disability policy in general.

The disability rights movement generally comprises people with physical disabilities. People with mental disabilities, and especially psychiatric disorders, normally stand apart from the larger disability rights community. Given the disability rights movement's profound impact on public policy, the question emerges: What role do people with psychiatric disabilities play in policies, such as the ADA, that affect them? After summarizing the development and role of the disability rights movement, this section considers the alliances of people with psychiatric disabilities and their potential role in implementing the ADA.

The Disability Rights Movement

The disability rights movement evolved slowly over the twentieth century (see references 12,49,50,57). While some groups organized around a shared occupation-related illness (e.g., miners with black lung disease), specific disability (e.g., the National Federation of the Blind), or other common ties (e.g., war veteran status), the social isolation of individuals with disabilities and their low socioeconomic status essentially barred them from organizing.

Social changes that began the 1960s inspired the vigorous growth of the disability rights movement. The disability rights movement embraced the values of equal opportunity and social integration advocated by people of color and women, and appropriated the political activism of the civil rights, womens, and consumer movements. The concepts of self-determination and freedom of choice also nurtured the concept of independent living (see reference 57). This model of coping with disability, in contrast to the medical dependence model, provided a framework for living with long- term disabilities. It emphasized the role of individuals with a disability in making decisions.

Changes in the populations of peoples with disabilities in America also helped foster the nascent disability rights movement. Many adolescents and young adults joined the ranks of people with disabilities after the epidemic of polio in the early 1950s and the Vietnam war in the 1960s and 1970s (see reference 49). More recently, an aging population (see reference 26) and the relative increase in chronic medical illness have added to the number of people with disabilities. Medical and technological advances lengthened life span and resulted in the survival of people with previously fatal diseases or congenital conditions. People with disabilities were no longer being instilled with a life-long experience of dependency and segregation. Thus discrimination, as opposed to physical impairment or personal attitude, assumed more importance in the lives of individuals with disabilities.

A leader of the disability rights movement, Patricia Wright, has noted that "(a)ll disabled people share one common experience--discrimination" (see reference 12). The recognition of discrimination as a key problem for people with disabilities had an important result: Individuals with disabilities gained a common identity (see reference 18) which fostered their work together in the public policy arena. Advocates documented discrimination and developed an arsenal of information that fueled their advocacy efforts (see references 18,41). The publicizing of problems that people with disabilities face in society as a result of myths, stereotypes, and exclusionary practices was a driving force behind the ADA and is reflected in the language of the law itself:

The Congress finds that . . . individuals with disabilities. . . have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the ability of such individuals to participate in, and contribute to, society... (42 U.S.C. 12101(a)).

Disability language also changed, moving away from "patronizing and stigmatizing descriptors to empowering and respectful terminology" (see reference 57). While differences exist in the disability community over appropriate language and its relative importance, in general "people first" language prevails: the phrase "people with disabilities" is used as opposed to "disabled people." The term "handicap" is generally rejected because of its negative connotations; it does not reflect how the environment contributes to producing disabilities.

Clearly, people with disabilities have made significant strides in the last 30 years. While still disproportionately poor and unemployed (see reference 21), they have formed a strong coalition, effectively and passionately advocating changes in public policy. They are increasingly at the helm of disability organizations, other interest groups, and Federal disability programs. The disability rights movement continues pressing for policy reform--in health insurance, home health care, and personal assistants--and ADA implementation (see references 37,38).

People With Psychiatric Disabilities and Their Family Members

The growing coalitions of people with psychiatric disabilities and their family members share some features with the broader disability rights movement, including social influences, an evolving sense of shared identity, and increasing involvement in public policy. People disabled by mental disorders often suffer lower socioeconomic status and unemployment. Medical advances contributed to social and public policy trends, such as deinstitutionalization (see reference 23). The civil rights and consumer movements of the 1960s and 1970s motivated some individuals with psychiatric disabilities as they did the disability rights movement in general. Beginning in the early 1970s, small groups of former patients railed against institutionalization and mental hospital abuses, as well as the perceptions of mental illness held by mental health professionals and the public (see references 6,7). These former patients and other advocates fought for and often won policy changes concerning involuntary commitment standards, patient civil rights, independent and community living, and treatment issues.

Changes in language were also a part of the movement of people with psychiatric disabilities. While all of the movement's members agree on the importance of destigmatizing, "people first" language, preferred designations for people with psychiatric disabilities include clients, consumers, ex-patients, patients, and psychiatric survivors (see reference 11). In this OTA report, people-first language will be used. Unless referring to a particular body of research in which there is a distinct and more specific designation (e.g., people with a particular diagnosis), the report will refer to people with mental disorders or psychiatric or mental disorder-based disabilities .

Coalitions of people with psychiatric disabilities and their families, primary and secondary consumers, are neither singular nor unified. Rather, various groups of people with psychiatric disabilities and mental health problems and their family members have joined together on the basis of need, treatment experience, types of disorders, and ideology (see references 13,55). It is important to note that while some leaders in the various groups have eloquently described the evolution and beliefs associated with their respective coalitions, little empirically based information (e.g., from surveys, ethnographic studies, etc.) documents these movements, or the experiences and beliefs of people involved in them (see references 13,20,55).

Nevertheless, hundreds, perhaps thousands of local consumer groups have formed across the nation (see references 13,55). At the national level, several groups figure prominently, including (in alphabetical order): Anxiety Disorders Association of America; National Association of Psychiatric Survivors; National Depressive and Manic-Depressive Association; and the National Mental Health Consumers' Association (see reference 20). An organization of family members as well as some primary consumers--the National Alliance for the Mentally Ill--also has a strong national voice. A brief description of each organization is provided below (and see table 2-3, not included):

Anxiety Disorders Association of America (ADAA): Between 2,000 and 4,000 professionals, consumers, and other interested parties form the membership of the ADAA (see references 1,20). Founded in 1980, the ADAA has an annual budget of more than $500,000 derived from membership fees, as well as individual and corporate contributions. Activities of the ADAA include: self-help/support groups, lobbying and public education efforts, and professional training seminars. When asked to describe its driving philosophy, the ADAA responded that "anxiety disorders are to be viewed on a par with physical illnesses which are currently most responsive to both medication and cognitive/behavioral therapy. No preference is expressed for either medication or therapy" (see reference 1).
National Association of Psychiatric Survivors (NAPS): NAPS, which began as the National Alliance of Mental Patients in 1985, emerged as a national coalition of local groups (see references 7,8,20). Individuals angry at their treatment by the mental health care system, including many of whom have experienced involuntary treatment and hospitalization, constitute the 2,000 active members of NAPS. The group shares some goals with other primary consumer organizations, such as the promotion of mutual support and self-help (see later discussion). But NAPS principles and tactics make it the most radical of consumer organizations. Members categorically oppose involuntary or forced treatment as well as the medical model of mental illness and treatment. They frequently adopt a confrontational approach in policy discussions and public forums.
National Depressive and Manic-Depressive Association (NDMDA): The NDMDA, formed in 1978, identifies as its primary objectives self-help and support for people with serious mood disorders and their families, and education (see reference 20). With more than 30,000 members and an annual budget approaching $800,000, NDMDA sponsors more than 200 local groups; forums and lectures for professionals, a semiannual national conference, several regional conferences, and publishes a quarterly newsletter, books, and other material. NDMDA views major depression and manic-depression as biological illnesses that can be treated with medication and therapy (see reference 39).
National Mental Health Consumers' Association (NMHCA): Most of the estimated 1,000 members of the NMHCA have serious psychiatric conditions, with many having experienced hospitalizations, involuntary treatment, and reliance on the public sector (see references 7,10,28). Formed in 1985 as a network of local consumer groups, NMHCA engages in a variety of advocacy, technical assistance, and self-help activities. While sharing a strong commitment to civil rights for people with mental disorders, self- representation, and self-help, the organization is less doctrinaire about the issue of forced treatment, and has worked for access to appropriate treatment, including medical interventions.
National Alliance for the Mentally Ill (NAMI): NAMI was founded in 1979, as a national alliance of parents and family members of people with severe mental disorders. Most of the approximately 140,000 members are secondary consumers, with the "typical member (being). . . a mother in her sixties with a son in his twenties who has schizophrenia" (see reference 19). Increasingly, primary consumers are active although not dominant in NAMI. They are members of the Client Council and Board of Directors at the national level and leaders of some local groups. NAMI is the most influential of national mental health consumer groups, as reflected in its annual budget of more than $2 million, large membership, and influence on public policy (see reference 20). The organization focuses on individuals with the most severe mental disorders and strongly advocates biomedical research and treatment.

Differences among these groups are real, and sometimes acrimonious. However, as they coalesce around shared goals, they also have much in common, including the experience and repudiation of stigma and discrimination, their insistence on the importance of empowerment and advocacy, and, notable for this report, the availability of jobs or meaningful activity (see reference 7).

While stigma and discrimination affect the lives of all people with disabilities, people with psychiatric disabilities suffer some of the harshest and cruelest attitudes (box 2-2). Although attitudes toward mental disorders may be improving (see reference 9), a recent national survey of public attitudes toward people with disabilities shows that, from the public's perspective, mental illness is the most disturbing of all disabling conditions (see reference 41) (figure 2-1, not available). This is not surprising given the exceedingly negative images of people with mental disorders--as incompetent, ineffectual, or violent--routinely projected by the news and entertainment media, the public's primary source of information about mental illness (see references 16,28,31,48,53) (see ch. 4 for discussion of mental disorders and violence).

The negative attitudes attached to mental disorders have profound implications for the implementation of the ADA. Fear, ignorance, and misperceptions about psychiatric disability undoubtedly contribute to employment discrimination (see references 40,56). Furthermore, the education of employers and coworkers about mental disorders as well as employee willingness to disclose a psychiatric disability will be critical (see ch. 4). Stigma and discrimination also inspire the adoption of a principle that seems to be universally held by consumer groups: empowerment.

Before defining empowerment, it is important to explicate one of the most insidious results of stigma and discrimination. People with psychiatric disabilities often internalize the attitudes and practices of people who victimize them (see references 7,28,40,43,56). Research findings support the observation that stigma and discrimination attached to mental illness undermine an individual's self-esteem and social interactions (see references 31,56). For example, one study (see reference 30) correlated the expectation of rejection with demoralization and unemployment among people with mental disorders.

To counter these crippling effects, many people with psychiatric disabilities and their family members hold empowerment as a fundamental goal (see references 5,34,55). While the term may suffer from overuse and some ambiguity (see reference 34), empowerment connotes a sense of personal and social potency. "Empowerment means acquiring the ability to make decisions that affect an individual's life" (see reference 55). Government officials at the Federal and State level increasingly endorse the principle of empowerment and have legislated consumer involvement in policy making and the delivery of mental health care (see reference 55). For example, the statement from the Federal consensus conference on "Strategies to Secure and Maintain Employment for Persons with Long-Term Mental Illness" prominently highlights consumer involvement (see reference 40): "It is important to promote the active participation of people with psychiatric disabilities at all levels of research development, implementation, and evaluation." Similarly, the National Association of State Mental Health Program Directors asserts in a position paper that "former mental patients/mental health consumers have a unique contribution to make to the improvement of the quality of mental health services in many arenas of the service delivery system. . . Their contribution should be valued and sought in areas of program development, policy formation, program evaluation, quality assurance, system designs, education of mental health service providers, and the provision of direct services" (see reference 43). Federal legislation also has required the involvement of people with psychiatric disabilities and their family members in mental health services and policy. The Mental Health Planning Act (P.L. 99-660) and the Protection and Advocacy for Mentally Ill Individuals Act (P.L. 99-319) require the formal involvement of consumers on State advisory bodies. A more recent development is the establishment of the Consumer/Survivor Mental Health Research Policy Work Group by the Center for Mental Health Services (CMHS). The group, which includes several people with psychiatric disabilities, identifies roles for consumers in mental health policy and research (see reference 3).

The Community Support Program (CSP) in CMHS is among the most prominent governmental supports for groups of people with psychiatric disabilities and their families (see reference 8; see ch. 5). Since its inception in 1977 as the first national program to promote consumer involvement in mental health care, CSP has funded several national conferences, two national technical assistance centers, a self-help clearinghouse, a national monthly teleconference, and various model programs for self-help and consumer service involvement (see ch. 5). In fiscal year 1993, CSP provided $4.4 million (about 35 percent of the CSP budget) in grants to 31 States to support family and consumer initiatives. In addition, the CSP funds research into the consumer movement (see reference 55).

Two activities commonly performed by consumer groups could effect better ADA implementation. First, these groups may offer technical assistance to businesses. Because people with psychiatric disabilities and their family members have a long involvement in rehabilitation, job clubs, and consumer-run businesses, they have first-hand knowledge of the issues that arise in employment (see reference 55). For example, Fountain House, founded in 1957 in New York, pioneered "club houses," an approach to psychosocial rehabilitation that provides for transitional employment services. The club houses place individuals in temporary jobs with on-site support and training. Second, many groups have considerable experience educating outside groups about mental disorders, a service that many employers may find helpful. Thus, many consumer organizations can help employers devise accommodations and sensitize them to the issues associated with psychiatric disabilities. As mentioned, the CSP supports two consumer-run national technical assistance centers--Project Share in Philadelphia, Pennsylvania, and the National Empowerment Center in Lawrence, Massachusetts--as well as the National Mental Health Consumer Self-Help Clearinghouse. These centers can assist employees and employers in finding local groups and employment/ADA related information.

Consumer self-help groups form another potential resource during ADA implementation. Such groups, in operation since the late 1970s, offer empowerment, inspiration, education, and support (see references 7,8,14,34,55). Self-help group functions range from support services to advocacy (see references 25,55). Recently published data detail the nature of these services and provide evidence that many people with psychiatric disabilities and their family members utilize them (see reference 55). While empirical proof of performance is yet to come, new and ongoing studies suggest that self-help groups can provide effective services (see references 25,55). Given their apparent wide use and the support that they provide, self-help groups may be useful in helping people with psychiatric disabilities address ADA employment issues.

The above discussion asserts that consumer groups may advance ADA implementation by serving as a source of information and support to employers and employees. Three caveats warrant notice, however: First, in general, employers have not tapped into the experience and expertise of people with disabilities; people with psychiatric disabilities and their family members may be even more underutilized. Second, characterization and evaluation of consumer-provided services to identify the groups that are most effective are at a very early stage (see references 25,29,34,55). Third, to be effective agents of information and support for the ADA, people with psychiatric disabilities and their family members need to understand the law.

SUMMARY AND CONCLUSIONS

This chapter summarizes the ADA's provisions, highlighting issues of employment. While not an in-depth analysis of the ADA's legislative history or requirements, the overview points out the importance of this legislative mandate for people with psychiatric disabilities. The overview also points out some potential problems. Chapters 3 and 4 consider these areas in greater detail.

The ADA stems from a 25-year history of antidiscrimination laws. Review of the policy antecedents of the ADA in this chapter and in the next led OTA to the conclusion that psychiatric disabilities do not always have an easy fit with Federal disability policies. This reflects the stigma attached to mental disorders and the complexity of psychiatric disability. This history has important implications for the ADA: Federal leadership, public education about the law's goals, and understanding of psychiatric disabilities will be critical for fair and effective implementation.

This chapter also outlines the history of people with disabilities in making public policy. Individuals with physical disabilities organized over the last three decades; they worked to invest disability policy with values of self-determination, equal opportunity, and full participation in society. United against discrimination, the disability rights movement passionately worked to win the ADA's passage. In addition, people with physical disabilities have achieved important policy goals, political clout, and leadership.

Although not yet at the same level of leadership and political influence as those with physical disabilities, people with psychiatric disabilities and their families have founded several national organizations and have gained a voice in public policy over the last 10 to 20 years. While often divided over priorities and ideologies, these groups express common concerns over the need for employment and the problems of discrimination. Their experience with employment, technical assistance, support groups, and public education has the potential to inform and promote ADA implementation.

CHAPTER 2 REFERENCES

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40. National Institute on Disability and Rehabilitation Research, "Strategies To Secure and Maintain Employment for Persons With Long-Term Mental Illness," Consensus Validation Conference, Washington, DC, September 1992.
41. National Organization on Disability, "Public Attitude Toward People With Disabilities," survey conducted by Louis Harris and Associates, Inc. (Washington, DC: 1991).
42. O'Keeffe, J., "Disability, Discrimination and the Americans With Disabilities Act," Consulting Psychology Journal: Practice and Research 45:3-9, 1993.
43. Parrish, J., "The Long Journey Home: Accomplishing the Mission of the Community Support Movement," Psychosocial Rehabilitation Journal 12:107-124, 1989.
44. Parry, J.W., "Mental Disabilities Under the ADA: A Difficult Path to Follow," Mental and Physical Disability Law Reporter 17:100-112, 1993.
45. Percy, S., Disability Rights Mandates: Federal and State Compliance With Employment Protections and Architectural Barrier Removal (Washington, DC: Advisory Commission on Intergovernmental Relations, 1989).
46. Rubenstein, L.S., "Mental Disorder and the ADA," Implementing the Americans With Disabilities Act: Rights and Responsibilities of All Americans, L.O. Gestin and H.A. Beyer (eds.) (Baltimore, MD: Paul H. Brookes Publishing Co., 1993).
47. Scallet, L.J., and Rohrer, C.F., Analysis: Americans With Disabilities Act and Mental Health (Washington, DC: Mental Health Policy Resource Center, 1990).
48. Scheff, T.J., Being Mentally Ill: A Sociological Theory, 2nd ed. (Chicago, IL: Aldine, 1984).
49. Scotch, R.K., From Good Will to Civil Rights: Transforming Federal Disability Policy (Philadelphia, PA: Temple University Press, 1984).
50. Shapiro, J.P., No Pity (New York, NY: Random House Inc., 1993).
51. Tucker, B.P., "Section 504 of the Rehabilitation Act after Ten Years of Enforcement: The Past and the Future," University of Illinois Law Review 4:845-921, 1989.
52. U.S. Congress, Government Accounting Office, Report to the Chairman, Subcommittee on Housing and Urban Affairs, Committee on Banking, Housing, and Urban Affairs, U.S. Senate, Public Housing: Housing Persons With Mental Disabilities With the Elderly, GAO/RCED-92-81 (Washington, DC: August 1992).
53. U.S. Congress, Office of Technology Assessment, The Biology of Mental Disorders, OTA-BA-538 (Washington, DC: Government Printing Office, September 1992).
54. U.S. Department of Health and Human Services, Office of the Inspector General, Revitalizing the Community Support Program (Washington, DC: June 1993).
55. Van Tosh, L., "Consumer/Survivor-Operated Self- Help Programs," in preparation.
56. Wahl, O.F., and Harman, C.R., "Family Views of Stigma," Schizophrenia Bulletin 15:131-139, 1989.
57. West, J. (ed.), The Americans With Disabilities Act: From Policy to Practice (New York, NY: Milbank Memorial Fund, 1991).

CHAPTER 3
HOW THE ADA AND RESEARCH DEFINE PSYCHIATRIC DISABILITIES

What is a disability? Being in a wheelchair? Not being able to see or hear? At first blush, the term may seem self-evident, conjuring up familiar images. But, in fact, disability is complex and much misunderstood. Various models and definitions of disability can be confusing (box 3-1). Stigmatizing stereotypes and misperceptions attached to disability further obscure its meaning. Finally, a disability is not simply what a person has, but reflects an individual's functional limitations and abilities, as well as the supports and demands of the environment in which that person lives and works.

Defining the disabilities that result from mental disorders may be even more difficult. Dubbed "invisible," psychiatric disabilities often are not obvious. Mental disorders engender such difficulties as problems in concentration or social interactions, which are usually not readily apparent. And public perceptions are even more fallacious and cruel: People with psychiatric disabilities often are considered dangerous, morally corrupt, inept, weak, or even fakes.

Clearly, the first order of business with the Americans With Disabilities Act (ADA) is the task of ensuring that all people who are affected by the law understand its definition of disability. Furthermore, implementing the ADA requires a nexus between the legal definitions and regulations and the true nature of these conditions. This chapter describes the ADA's definition of disability, along with relevant regulations and guidelines from the U.S. Equal Employment Opportunity Commission (EEOC), and how research characterizes these conditions.

THE ADA'S DEFINITION OF DISABILITY

Chapter 2 of this report introduces the ADA's three-pronged definition of disability: individuals with a current impairment that substantially limits a major life activity, those with a history of such impairment, or those perceived as having such an impairment. Regulations and interpretive guidelines from the EEOC expound on thisapproach to disability, and draw from the ADA's legislative history and regulations, and case law from section 504 of the Rehabilitation Act.

After repeating the ADA's disability definition, the EEOC expands on the first prong to include explicitly mental disorders: "Physical or mental impairment mean(s)... [a]ny mental or psychological disorder, such as... emotional or mental illness... (56 FR 35735)." Note that the EEOC does not equate mental impairments with a particular diagnostic framework (e.g., the Diagnostic and Statistical Manual, third edition, revised--or DSM-III-R) (see reference 2). However, many experts contend that as a practical matter, a DSM-III-R diagnosis will be necessary if not sufficient to cross the impairment threshold in the first prong of the ADA definition (see reference 12). The EEOC further delimits the notion of impairment and specifies that an impairment exists even when the condition is completely controlled by medications or other devices (56 FR 35741). Distinguishing between "impairments and physical, psychological, environmental, cultural and economic characteristics that are not impairments" is, however, considered paramount. For example, normal traits, such as poor judgment or a quick temper, are deemed distinct from impairments (56 FR 35741).

ADA and EEOC regulations do not explicitly protect people genetically predisposed to a disease under this prong of the definition. Indeed, the EEOC's guidelines explicitly exclude "predisposition to illness or disease" in defining impairment. Because some mental disorders have a genetic component and genetic tests for predisposition may become possible, this distinction could have future ramifications for people with psychiatric disabilities (see references 19,46). Given concerns about employment and insurance discrimination against people with genetic diseases, some experts and advocates have urged the EEOC to delineate such coverage (see reference 51). However, others concerned about simplistic and discriminatory perceptions of genetic predisposition to illness maintain that it is critical to distinguish between such predisposition and the illness itself (see references 10,37).

Two recent analyses note that courts rarely disputed whether an individual had a mental impairment under the Rehabilitation Act (see references 19,40). According to Haggard, "the impairments to qualify for protection under the Rehabilitation Act [have included]: paranoid schizophrenia, manic-depression, depression, post-traumatic stress disorder, borderline personality disorder, schizoid personality disorder, passive aggressive personality disorder, kleptomania, apraxia, transsexual disorder, and mental retardation" (see reference 19). The ADA excludes some of these and other disorders--specifically, transvestism, transsexualism, pedophilia, exhibitionism, voyeurism, gender identity disorders not resulting from physical impairments, other sexual behavior disorders, compulsive gambling, kleptomania, pyromania, or psychoactive substance use disorders resulting from current illegal use of drugs--as noted in chapter 2. While these restrictions are decried as stigmatizing (see reference 40), or at least detrimental to treatment (see reference 23), they reflect the contentious issues surrounding substance abuse and various DSM-III-R diagnoses (see reference 46).

Simply having an impairment--any impairment--does not equal having a disability under the first prong of the definition. The ADA further circumscribes the concept of disability by adding that the impairment must "substantially limit one or more of the major life activities (42 USC 12102.3(2)(A))." The EEOC's spelling out of "substantially limits" and "major life activities" upholds the basic principle that a disability reflects impairment and functional result, although the interpretation of those terms will be difficult. In line with the spirit of the law and the opinion of many advocates, the EEOC's interpretation also asserts that the ADA's protection is for those with "significant" or nontrivial impairments. The EEOC's regulations state:

The term substantially limits means:

(i) Unable to perform a major life activity that the average person in the general population can perform; or

(ii) Significantly restricted as to the condition, manner or duration under which an individual can perform a particular major life activity as compared to the condition, manner, or duration under which the average person in the general population can perform that same major life activity. . .

The following factors should be considered in determining whether an individual is substantially limited in a major life activity:

(i) The nature and severity of the impairment;
(ii) The duration or expected duration of the impairment; and
(iii) The permanent or long term impact, or the expected permanent or long term impact of or resulting from the impairment (56 FR 35735).

As noted above, this explanation connotes significant impairment. Certain mental disorders, by their very nature, possibly could be considered a disability under the ADA. The EEOC guidelines state:

The determination of whether an individual has a disability is not necessarily based on the name or diagnosis of the impairment the person has, but rather on the effect of that impairment on the life of the individual. Some impairments may be disabling for particular individuals but not for others, depending on the stage of the disease or disorder, the presence of other impairments that combine to make the impairment disabling or any number of other factors. Other impairments, however,. . . are inherently substantially limiting (56 FR 35741).

Certain mental disorders are, by their nature and definition, chronic and quite disabling. For example, the DSM-III-R diagnostic criteria for schizophrenia include severe symptoms (e.g., hallucinations and catatonic behavior), marked functional impairment, and a duration of at least 6 months (see reference 2). People with schizophrenia often suffer a lifelong, degenerating course. Certainly the determination of a work accommodation normally requires more information than a diagnosis, for mental disorders or other conditions. And some advocates and experts note that classifying a particular disorder as "severe" or "chronic" can be stigmatizing. Nonetheless, it is clear that the diagnostic criteria for certain mental disorders make them, by definition, "inherently substantially limiting." Advice to the EEOC on this point from experts and advocates could assist in delineating diagnoses that fall in this category.

Another point to consider, in regard to the definition of "substantially limiting," is the duration of an impairment. The EEOC, in its regulations and guidelines, asserts that the duration of an impairment is an important consideration in determining whether it is substantially limiting. The guidelines elaborate: "[T]emporary, non-chronic impairments of short duration, with little or no long term or permanent impact, are usually not disabilities" (56 FR 35741). Department of Justice regulations for Title II also indicate, in slightly different language, that "short-term or transitory illnesses are not disabilities if they do not place a substantial limitation on a person's major life activities." Some mental health advocates and experts object to defining "substantial limitation" in terms of duration or temporal limits (see reference 24). While the guidelines do not list a psychiatric impairment as an example ("[S]uch impairments may include, but are not limited to, broken limbs, sprained joints, concussions, appendicitis, and influenza."), conditions such as short-term depression following the loss of a spouse, which is a temporally delimited mental disorder included in the DSM-III-R, may not be considered disabilities under this rationale.

Mental health experts and advocates have expressed concern over how impairments that episodically remit then intensify fit into the ADA's definition of disability (see reference 40). While many major mental disorders are chronic conditions, like some physical impairments (e.g., multiple sclerosis), symptoms may wax and wane over time. EEOC staff indicated to OTA that a new chapter for the compliance manual on the topic of "Disability" will expressly address this issue. "Episodic disorders, which remit and then intensify, may be ADA disabilities. They may be substantially limiting when active or may have a high likelihood of reoccurrence in substantially limiting forms. In addition, such conditions may require a substantial limitation of a major life activity to prevent or to lessen the likelihood or severity of recurrence. Finally, side effects of medications may be substantially limiting in themselves" (see reference 48).

"Major life activities" is the other defining term discussed by the EEOC: an impairment rises to the level of disability if it limits a major life activity. The EEOC defines major life activities in its regulations as "functions such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working." The interpretive guidelines provide further details: "Major life activities are those basic activities that the average person in the general population can perform with little or no difficulty. Major life activities include caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working" (56 FR 35741). Even though the list of major life activities provided by the EEOC is not meant to be exhaustive, many mental health advocates and experts have criticized it, asserting that none of the examples is especially relevant to psychiatric disabilities (see references 19,40). To quote the American Psychological Association's comment on the regulations:

In the listing of "major life activities," the only activity listed which is likely to pertain to people with mental disabilities is "working." "Working" is a very general term and so persons with mental disabilities will be put in the difficult and possibly untenable position of having to prove they are qualified to work at the same time that they have to demonstrate that they are substantially limited in their ability to work in order to be covered by the ADA (see reference 3).

It is important to note that neither the EEOC nor all mental health experts concur with this viewpoint (see reference 29). As noted by analysts with the EEOC, "In our view, the major life activities of learning, caring for oneself, and performing manual tasks all may be substantially limited by psychiatric disorders or by the side effects of psychotropic medications" (see reference 48). Advocates' concerns reflect, in part, the fact that people do not generally appreciate how mental disorders can impair function.

Various mental health advocates have suggested that the following life functions be added to EEOC technical assistance materials or guidelines: remembering, concentrating, thinking, information processing, communicating, perceiving, reasoning, and maintaining social relationships (see references 3,40). Although the list of major life activities in the EEOC's guidelines is not meant to be exhaustive, more explicit guidance in terms of mental disorders and related disabilities would undoubtedly be very useful to employers and employees attempting to implement the ADA. The next section summarizes information on the functions and activities that are limited in psychiatric conditions.

It is also relevant to note how the EEOC defines a substantial limitation in the major life activity of working. First, the EEOC states that this consideration is one of last resort. "If an individual is substantially limited in any other major life activity, no determination should be made as to whether the individual is substantially limited in working" (56 FR 35741). In the absence of a limitation in other major life activities, the EEOC advises an individualized evaluation of work limitation. Consideration should be given, in the view of the EEOC, to the geographic area to which an individual has reasonable access, as well as the number and types of jobs--with similar or distinct qualification demands--affected by the work limitation. The EEOC is careful to note that "an individual does not have to be totally unable to work in order to be considered substantially limited in the major life activity of working.

While the guidelines do not provide a description, they do refer to a case relevant to psychiatric disabilities brought under the Rehabilitation Act--Forrisi v. Bowen, 794 F. 2d 931, 934 (4th Cir. 1986). This case shows that while courts have been expansive in defining mental impairment per se, substantially limiting psychiatric impairments have sometimes been defined more restrictively. In this particular case, the court held that acrophobia--fear of heights--did not substantially limit a utility systems repairman from jobs that do not require climbing and exposure to heights; he did not have a disability under the law.

The last two prongs of the ADA's disability definition add a record of past impairment and the perception of such an impairment in the law's definition of disability:

Has a record of such impairment means has a history of, or has been misclassified as having, a mental or physical impairment that substantially limits one or more major life activities.

Is regarded as having such an impairment means:

(1) Has a physical or mental impairment that does not substantially limit major life activities but is treated... as constituting such limitation;
(2) Has a physical or mental impairment that substantially limits major life activities only as a result of the attitudes of others toward such impairment; or
(3) Has none of the impairments defined (above). . . but is treated by a covered entity as having a substantially limiting impairment (56 FR 35735).

The law itself, these regulations, and guidelines from the EEOC reflect an attitude of zero-tolerance for employment decisions based on stereotypes or discriminatory beliefs. The often-cited decision of the U.S. Supreme Court in SchoolBoard of Nassau County v. Arline (1987) underscores the point that the attitudes of others are important contributors to disability:

. . . [S]ociety's accumulated myths and fears about ability and diseases are as handicapping as are the physical limitations that flow from the actual impairment (480 U.S. 273 (1987)).

As noted in chapter 2, the stigma attached to psychiatric disabilities epitomizes this U.S. Supreme Court finding. Indeed, the negative attitudes surrounding mental disorders are so strong that job application forms commonly asked: "Have you had a nervous breakdown?" "Have you ever been hospitalized in a mental institution?" or "Have you ever received treatment for a nervous or emotional condition?" These questions evince the firmly entrenched belief in our society that mental illness, present or past, is incompatible with work. Research and experience reflected in the second part of this chapter show that this simplistic belief is false.

The ADA should make such questions a thing of the past. Title I of the ADA prohibits employers from asking applicants about their disabilities, an important protection for such "invisible" conditions as psychiatric disabilities. Under the ADA, employers are barred from using any source of information about disability status--voluntary medical examinations, educational records, prior employment records, billing information from health insurance, psychological tests, and others. In addition to prohibiting pre-job-offer medical exams and prescribing a specific mechanism for conducting post-offer exams, the burden of proof placed on employers serves to protect applicants and employees with disabilities. While the burden of proving that one is disabled under the ADA's definition lies with the individual alleging discrimination, the EEOC's guidelines indicate that the second prong "of the definition is satisfied if a record relied on by an employer indicates that the individual has or has had a substantially limiting impairment." In terms of the third prong of the ADA's definition of disability, the EEOC guidelines require employers to "articulate a non-discriminatory reason for the employment action. . . (or else) an inference that the employer is acting on the basis of `myth, fear or stereotype' can be drawn" (56 FR 35743).

RESEARCH CHARACTERIZATIONS OF PSYCHIATRIC DISABILITIES

The above discussion reveals several questions about psychiatric disability that are relevant under the ADA. How do mental disorders affect life activities? Which impairments are most limiting? How long do the symptoms and functional limitations of various mental disorders last, and do they recur? Many of the legal issues concerned with these questions await further governmental guidance and adjudication. However, knowledge from research on and past experience with mental disorders can assist ADA implementation. This section describes current models of and provides information on psychiatric disabilities.

Mental disorders and their functional sequelae are prevalent and costly to society at large and in the workplace:

People with mental disorders account for approximately 10 percent of the charges filed by individuals with the EEOC between July 26, 1992 and October 31, 1993; they represent the second largest population of disabilities (see reference 48).
Decreased productivity and lost work days are the largest cost imposed by mental disorders on society. Of the total estimated cost of $136.1 billion in 1991, $60.0 billion or nearly 50 percent accrued from lost output, exceeding the cost of hospitalization, care provider consultation, and medication combined (see references 38,43).
Data from a recent survey of white collar workers confirm the high toll of depression on business: 9 percent of the men and 17 percent of the women surveyed experienced an episode of major depression during the previous year. More than 50 percent of employees with depressive symptoms reported work impairments (see reference 14).
Data from several studies link depression to disability at work (see references 13,22,50): Individuals with depression were shown to experience four times as many disability days when compared to asymptomatic individuals. In fact, depressive symptoms lead to levels of disability comparable to major heart conditions and exceed other major medical disorders such as diabetes. Furthermore, simply the presence of depressive symptoms--far below the threshold for a diagnosis of major depression--significantly impairs functioning.

What are mental disorders? As noted in an earlier OTA report, The Biology of Mental Disorders (see reference 46), mental disorders encompass a broad range of conditions,classified on the basis of expressed thought processes or emotions, observed behaviors, physical symptoms, and functional impairments. Some of the most common and serious conditions afflicting American adults, their symptoms and common treatments are listed in table 3-1 (not accessible online). As in physical conditions, mental disorders can range from temporary, relatively minor conditions to chronic and severely incapacitating disorders. The more common and serious conditions listed in table 3-1 typically have a chronic course, with symptoms remitting and relapsing. While the causes of many mental disorders have not been determined, ongoing research is providing more clues about the biological and psychological substrates and contributors. Furthermore, in many cases effective treatment approaches, including medication and psychotherapy, are available (see reference 47).

Just how prevalent are mental disorders? The most recently reported findings from the National Institute of Mental Health's (NIMH's) Epidemiologic Catchment Area (ECA) program show that more than one in five American adults has a diagnosable mental disorder in a given year (see reference 42) (table 3-2, not available). Conditions range from the less common disorders of schizophrenia and bipolar disorder, with a 1-year prevalence rate of 1.1 +/- 0.1 percent and 1.2 +/- 0.1 percent, respectively, to the exceedingly prevalent mood disorders of major depression (5.0 +/- 0.2 percent), and dysthymia (5.4 +/- 0.2 percent). The ECA data also reveal that 14.7 .percent of American adults--more than 23 million people--sought treatment for mental or addictive disorders from mental health specialists, primary care providers, other human service personnel (such as pastoral counselors), and/or peers, families, and friends (table 3-3, not available).

The ECA data underline the broad spectrum of diagnoses and service needs that typify mental health problems in the United States. Although it is clear that all of these conditions would not equal disabilities under the ADA, this diversity will undoubtedly surface in the workplace, as indicated by requests received by the Job Accommodation Network (JAN), which is funded by the President's Committee on the Employment of People with Disabilities. While 47 percent of the inquiries received by JAN related to mood disorders, calls sought information on a wide variety of mental disorders (table 3-4 not available). What these data on diagnoses, symptoms, and service use do not reveal is the nature of associated disabilities. Current models of psychiatric disability began with the need to apportion resources and to deliver useful services. Psychiatric or psychosocial rehabilitation comprises a broad range of services that "assist persons with long-term psychiatric disabilities increase their functioning so that they are successful and satisfied in the environments of their choice with the least amount of ongoing professional intervention" (see refe¯rences 5,7). The psychosocial rehabilitation model, based on the WHO's model for disability (see references 5,21,27) (table 3-5, not available), specifies that an impairment, which entails the symptoms of a mental disorder, may restrict certain skills or functions including various social skills. Psychiatric disabilities may impede an individuals' ability to fulfill certain roles, such as holding a job. This model has clear implications for service delivery: While treatment to alleviate a psychiatric impairment remains important, interventions geared toward improving skills, functional performance and environmental supports are also critical.

What data exist concerning the prevalence and nature of psychiatric disabilities (box 3-2)? No data specify how many people with psychiatric disabilities are covered by the ADA. However, recent information from a random survey of adults living in communities detail the prevalence of psychiatric disabilities and associated serious limitations in activity (see reference 8). The results of the 1989 supplement to the National Health Interview Survey indicate that approximately 5 million adults with 3.3 million currently in communities-- 1.8 percent of the total population--have a serious mental illness: a mental disorder during the past year that seriously interfered with daily life. Nearly 80 percent of individuals with a psychiatric impairment were limited in: taking care of personal needs such as eating, dressing, and bathing (activities of daily living); managing money, doing everyday household chores, and getting around outside the home (instrumental activities of daily living); and, cognitive and social functioning. Impaired functioning translated into employment problems for many: Nearly 50 percent of the people with serious mental illnesses between the ages of 18 and 69 were either completely unable to work (28.9 percent) or limited in work (18.4 percent). Unsurprisingly, a significant fraction of these individuals--23.2 percent--receive disability payments from the government, because of their mental conditions.

This study also defines functional limitations that stem from mental disorders and are especially relevant to employment. More than 90 percent of those restricted inwork: 1) experience problems in social functioning; 2) have problems coping with day-to-day stress; and 3) find it difficult to concentrate long enough to complete tasks (table 3-6, not available). These data mirror guidelines for assessing disability (e.g., SSA disability determinations), experience in service delivery, and a large body of research (see reference 17). Preliminary data and analysis related to the ADA also echo these findings. Telephone requests handled by JAN since the ADA's implementation identify stress intolerance as an important functional limitation in mental illness (see reference 25). Other limitations related by callers include behavior that may contribute to problems in interpersonal relationships, and the reduced ability to concentrate. Similarly, in a report on 12 employed individuals with serious mental disorders, common functional limitations included difficulty concentrating, handling stress, initiating personal contact, and responding to negative feedback (see reference 31).

While the conceptual model of psychiatric disabilities embrace the notion of impairment and functional limitation, the relative role of each factor in work is unclear and controversial. On the one hand, many people in the psychosocial rehabilitation community disavow a high correlation between symptoms or diagnosis and employment outcome (see references 4,5,35).

A number of studies illustrate the lack of relationship between a variety of assessments of psychiatric symptomatology and future ability to live and work independently. . . Although occasional studies do report a relationship between a type of symptom and rehabilitative outcome . . . the evidence is overwhelming that little or no relationship exists (see reference 5).

On the other hand, some researchers offer evidence of significant correlation between psychopathology and work performance. For example, data from a recently completed study of nearly 500 individuals with various mental and addictive disorders implicate a close correlation between the type and severity of symptoms and work performance and employment (see references 28,30,32).

[A]ssessments of psychiatric symptoms and vocational performance... documented that severity of psychiatric symptoms was significantly related to the functional capacity for work in a wide variety of mental disorders. Persons with psychotic disorders performed much more poorly on work performance than those with non-psychotic disorders (see reference 30). These seemingly antithetical results reflect differing measures of psychiatric symptomatology, measures of work performance, and vocational outcomes. Furthermore, treatment status and individual ability are almost always ignored in these studies as are traditional labor force predictors (e.g., age, gender, ethnicity, and social class), the type or amount of any vocational services that the individual may have received, and prior job history (see reference 15). Complete resolution of how impairment, functional limitation, and work disability relate to one another awaits further research (box 3-3). That is not to say that some conclusions cannot be drawn. Data and experience permit the following assertions.

Psychiatric symptomatology has practical relevance for employment. Some research data suggest an important link between certain psychiatric impairments and ability to work. Indeed, several scholars, upon review of the research literature, acknowledge data supporting the link between symptoms and functioning, and point out the association between severe and chronic conditions, psychotic features, and subsets of symptoms and work (see references 5,16,49). What does this mean now, in practical terms? People with psychiatric disabilities as well as care providers, advocates, and other experts note that exacerbation of symptoms may require brief time away from work for treatment (see discussion of reasonable accommodations in chapter 4). In fact, access to treatment may become paramount.

Many people with psychiatric disabilities will find access to appropriate treatment necessary for maintaining employment. Even experts who highlight the importance of functional and environmental interventions admit that medication, psychotherapy and/or other clinical interventions are a necessary component of care. "Psychiatric treatment and psychiatric rehabilitation procedures ideally occur in close sequence or simultaneously" (see reference 5). Results from a recent study of depression reinforce this point. Data from 10 major studies of depression treatment revealed that symptom relief significantly improved work function and outcome (see reference 33). The authors of the study concluded that "behavioral impairments, including missed time, decreased performance, and significant interpersonal problems are common features of depression that appear to be highly responsive to symptomatically effective treatment given adequate time" (see reference 33). Although many effective medications, psychotherapeutic interventions, and other approaches are available (see references 1,47), access to effective treatment is far from universal. Research and policy analyses point to several barriers to treatment, including: Limitations on insurance coverage, under-recognition of symptoms by care providers, and inadequate or inappropriate treatment offered by some care providers (see reference 46). Without access to treatment, the protections and requirements of the ADA become a moot point for many people with psychiatric disabilities.

While important, the relevance of psychiatric symptoms and treatment to employment remains limited and not clearly understood. The precise relationship among impairments, functional limitations, and work is obscure and complex. For example, the course of symptoms over time does not parallel that of functional limitations. An author of one recent review of the data concluded that "diagnoses do not predict rehabilitation outcomes except in the broadest terms, and there are wide variations in outcomes within diagnostic groups" (see reference 49). Also, while research data increasingly characterize the nature of cognitive impairments in schizophrenia--including problems with attention, memory, information processing, and other aspects of learning--very little is known about how these specific deficits relate to job performance (see references 18,20,34,39,41,49). Certainly the presence of even unusual symptoms does not necessarily hamper work performance. An example, shared by a rehabilitation specialist, conveys this last point: A computer programmer, who suffered hallucinations that could be distracting, found that audibly responding to the voices allowed him to continue successfully with his work (see reference 9). No doubt, the young man's talking to himself appeared unusual to his coworkers, but his work did not suffer.

Clinical treatment can have a paradoxical impact on disability and employment. While, as noted above, effective treatments are available for many mental disorders, they are not a panacea. Medications are not effective for everyone, and some of the most disabling symptoms of mental disorders may resist their effects. In fact, medication has little direct impact that has been measured on such functional issues as interpersonal relationships (see references 6,49). Furthermore, the side effects of psychotropic medications can prove quite annoying if not outright disabling. Some common side effects of psychoactive medications include: Dry mouth, constipation, blurred vision, memory difficulties,restlessness, tremor, and sedation. Data from a recent survey of employed individuals with psychiatric disabilities confirm this observation: Medication side effects commonly led to functional difficulties on the job (see reference 31). Similarly, a reviewer of the research literature concluded that while standard or minimal medication dose in schizophrenia was associated with positive work outcomes, a "surprising number of studies [suggested] that higher dose or more consistent neuroleptic treatment might be associated with poorer work outcomes" (see reference 32).

This research on impairments and their treatments notwithstanding, one of the most reliable indicator of future work performance is prior work (see references 11,16):

Notably, every study that investigated the link between prior work history and future vocational performance has found a significant, positive relationship between these two variables (see reference 16).

Some of the most severe mental disorders interrupt key aspects of developing a work history, however. For most people, late adolescence and early adulthood are critical times for building vocational skills and gaining knowledge, through education or early work experience. This is just the time that symptoms of disorders such as schizophrenia first erupt. ECA data reveals the resulting disruption of educational achievement. While the educational achievement of people with schizophrenia is comparable to others at the beginning of college, achievement diverges by the end of college: Only 4.8 percent of individuals with schizophrenia obtain a degree compared to 17 percent in the total population (see referen