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 reference 26).

What do these data imply for the ADA? Quite bluntly, people with the most severe mental disorders, and often with less education and a checkered work history, are unlikely to achieve competitive employment by virtue of the ADA's passage alone. Individuals with severe psychiatric disabilities will require a broad range of educational, psychosocial, and vocational services to prepare them to find and keep a job. While the ADA is an important tool for fighting the discrimination commonly attached to psychiatric disabilities, it is only one piece of the puzzle for people with the most severe conditions.

Several experts have commented that the ADA's impact will be most strongly felt by people with less severe mental disorders (see references 12, 45): There are many people, probably a much larger number, in the workforce with less severe conditions or less pronounced functional limitations, who have much to gain from the ADA. It is particularly for their vocational needs that the provisions of the ADA provide a good fit (see reference 12).

Indeed, data described throughout this section demonstrate the prevalence of diagnosable mental disorders and symptoms among working-age adults. However, much less is known about this population's functional limitations, 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. As noted above, the first prong of the ADA's definition 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.

SUMMARY AND CONCLUSIONS

The ADA's definition of disability explicitly includes people with psychiatric disabilities, as does Title V of the Rehabilitation Act. Furthermore, the law addresses some specific concerns of this population, such as discrimination on the basis of past impairment. More recently, the EEOC has been developing guidelines especially relevant to psychiatric disabilities, including a discussion of issues surrounding episodic disorders and the potentially impairing effects of treatment. The charge coding system used by the EEOC is also being updated to reflect more specific diagnostic terminology. Further guidance from the EEOC concerning psychiatric disabilities would still be useful. Specifically, questions remain on whether any mental disorders are, by definition, "substantially limiting impairments" and how to determine the functional implications of psychiatric impairments. A useful first step on these questions would be to convene groups of experts to help fashion guidance.

OTA's review of the literature reveals some general characteristics of psychiatric disabilities:

Mental disorders range from relatively short-lived, minor conditions to extremely debilitating, chronic ones with remitting and relapsing symptoms.
Data do not divulge the number of people with psychiatric disabilities covered by the ADA. We know that mental disorders are common, with more than one in five American adults having a diagnosable mental disorder in a given year. Five million adults in the U.S. have a serious mental illness: A mental disorder during the past year that seriously interfered with daily life.
Studies document a few, specific functional limitations associated with mental disorders and relevant to employment: Problems in social functioning; difficulty in concentrating; and problems coping with stress.
The relative role of symptoms and functional limitations in employment for people with psychiatric disabilities has been a contentious topic. Data do permit some conclusions, however. Psychiatric symptoms have been linked to work performance and employment outcome. Thus, access to effective treatment and time off during symptom exacerbation, or other accommodation of symptoms, will be important for many people with psychiatric disabilities. Symptomatology is not the whole picture, however. Functional limitations and environmental supports (or lack thereof) are critical issues for people with psychiatric disabilities.
It is unlikely that people with the most severe psychiatric disabilities will gain competitive employment-- the underlying value of the ADA--in the absence of treatment, access, and vocational and other psychosocial supports.
Many more people with less severe conditions may be covered by the ADA. However, much less is known about this population's functional limitations, 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. 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.

OTA recommends research into the following issues to close the psychiatric disability data gap:

The relationship between mental disorder symptom and treatment to work disability.
The number of people with mental disorders covered by the ADA.
The development of functional assessment measures of psychiatric disabilities for clinical and public policy arenas.
The impact of the ADA on the relationship between mental disorders and employment status.

CHAPTER 3 REFERENCES

1. Agency for Health Care Policy Research, U.S. Department of Health and Human Services, Public Health Service, Depression in Primary Care: Vol. 2: Treatment of Major Depression, Clinical Practice Guideline No. 5, AHCPR Publication No. 93-0551 (Rockville, MD, April 1993).
2. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (Third Edition- Revised), DSM-III-R (Washington, DC: 1987).
3. American Psychological Association, letter to Equal Employment Opportunity Commission, Apr. 29, 1991.
4. Anthony, W.A., and Jansen, M.A., "Predicting the Vocational Capacity of the Chronically Mentally Ill: Research and Policy Implications," American Psychologist 39:537-44, 1984.
5. Anthony, W., Cohen, M., and Farkas, M., Psychiatric Rehabilitation (Boston, MA: Center for Psychiatric Rehabilitation, 1990).
6. Armstrong, H.E., "Review of Psychosocial Treatment for Schizophrenia," Current Psychiatric Therapy, D.L. Dunner (ed.) (Philadelphia, PA: W.B. Saunders Co., 1993).
7. Bachrach, L.L., "Psychosocial Rehabilitation and Psychiatry in the Care of Long-Term Patients," American Journal of Psychiatry 149:1455-1463, 1992.
8. Barker, P.R., Manderscheid, R.W., Hendershot, G.E. et al., "Serious Mental Illness and Disability in the Adult Household Population: United States, 1989," Advance Datafrom Vital and Health Statistics of the Centers for Disease Control/National Center for Health Statistics, No. 218, Sept. 16, 1992.
9. Bell, C.G., Attorney, Jackson, Lewis, Schnitzler and Krupman, Washington, DC, personal communication, Jan. 13, 1993.
10. Billings, P.R., Kohn, M.A., de Cuevas, M. et al., "Discrimination as a Consequence of Genetic Testing," American Journal of Human Genetics 50:476-482, 1992.
11. Bond, G.R., and Friedmeyer, M.K., "Predictive Validity of Situational Assessment at a Psychiatric Rehabilitation Center," Rehabilitation Psychology 32:99-111, 1987.
12. Bonnie, R.J., Visiting Professor of Law, Cornell Law School, Ithaca, NY, personal communication, Oct. 1, 1993.
13. Broadhead, W.E., Blazer, D.G., George, L.K. et al., "Depression, Disability Days, and Days Lost From Work in a Prospective Epidemiologic Survey," Journal of the American Medical Association 264:2524-2528, 1990.
14. Bromet, E.J., Parkinson, D.K., Curtis, E.C. et al., "Epidemiology of Depression and Alcohol Abuse/Dependence in a Managerial and Professional Work Force," Journal of Occupational Medicine 32:989-995, 1990.
15. Cook, J.A., Director, Thresholds National Research and Training Center on Rehabilitation and Mental Illness, Chicago, IL, personal communication, Sept. 15, 1993.
16. Cook, J.A., and Rosenberg, H., "Predicting Community Employment Among Persons With Psychiatric Disability: A Logistic Regression Analysis," Journal of Rehabilitation Administration, in press.
17. Goldman, H.H., Gattozzi, A.A., and Taube, C.A., "Defining and Counting the Chronically Mentally Ill," Hospital and Community Psychiatry 32:21-27, 1981.
18. Green, M.F., "Cognitive Remediation in Schizophrenia: Is It Time Yet?" American Journal of Psychiatry 150:178-187, 1993.
19. Haggard, L.K., "Reasonable Accommodation of Individuals With Mental Disabilities and Psychoactive Substance Use Disorders Under Title I of the Americans With Disabilities Act," Journal of Urban and Contemporary Law 43:343-390, 1993.
20. Hogarty, G.E., and Flesher, S., "Cognitive Remediation in Schizophrenia: Proceed. . . With Caution!" Schizophrenia Bulletin 18:51-57, 1992.
21. Institute of Medicine, Disability in America: Toward a National Agenda for Prevention, A.M. Pope and A.R. Tarlov (eds.) (Washington, DC: National Academy Press, 1991).
22. Johnson, J., Weissman, M.M., and Klerman, G.L., "Service Utilization and Social Morbidity Associated With Depressive Symptoms in the Community," Journal of the American Medical Association 267:1478-1483, 1992.
23. Jones, N.L., "The Alcohol and Drug Provisions of the ADA: Implications for Employers and Employees," Consulting Psychology Journal: Practice and Research 45:3-9, 1993.
24. Jones, N.L., Legislative Attorney, American Law Division, Congressional Research Service, Library of Congress, Washington, DC, personal communication, September 1993.
25. Judy, B., Executive Director, Job Accommodation Network, remarks at "Americans With Disabilities Act, Mental Illness, and Employment," a workshop sponsored by the Office of Technology Assessment, U.S. Congress, Apr. 21, 1993.
26. Keith, S.J., Regier, D.A., and Rae, D.S., "Schizophrenic Disorders," Psychiatric Disorders in America: The Epidemiologic Catchment Area Study, L.N. Robins, and D.A. Regier (eds.) (New York, NY: The Free Press, 1991).
27. Liberman, R.P., Psychiatric Rehabilitation of Chronic Mental Patients (Washington, DC: American Psychiatric Press, 1988).
28. Liberman, R.P., "Psychiatric Symptoms and the Functional Capacity for Work: Provisional Final Report, Research Grant," No. 10-p-98193-9004 from the Social Security Administration, Mar. 23, 1989.
29. Liberman, R.P., Professor of Psychiatry, UCLA School of Medicine and Director, Clinical Research Center for Schizophrenia and Psychiatric Rehabilitation, Camarillo, CA, personal communication, Aug. 30, 1993.
30. Liberman, R.P., Mintz, J., Massel, H.K. et al., "Psychopathology and the Functional Capacity for Work," abstract provided to OTA, 1993.
31. Mancuso, L.L., Case Studies on Reasonable Accommodations for Workers With Psychiatric Disabilities (Sacramento, CA: California Department of Mental Health, 1993).
32. Mintz, J., Mintz, L.I., and Phipps, C.C., "Treatments of Mental Disorders and the Functional Capacity to Work," R.P. Liberman (ed.) Handbook of Psychiatric Rehabilitation (New York, NY: Macmillan Publishing Co., Inc., 1992).
33. Mintz, J., Mintz, L.I., Arruda, M.J., et al., "Treatments of Depression and the Functional Capacity to Work," Archives of General Psychiatry 49:761-768, 1992.
34. Mueser, K.T., Bellack, A.S., Douglas, M.S. et al., "Prediction of Social Skill Acquisition in Schizophrenia and Major Affective Disorder Patients From Memory and Symptomatology," Psychiatry Research 37:281-296, 1991.
35. 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.
36. Natowicz, M.R., Alper, J.K., and Alper, J.S., "Genetic Discrimination and the Law," American Journal of Human Genetics 50:465-475, 1992.
37. Nelkin, D., and Tancredi, L., Dangerous Diagnostics: The Social Power of Biological Information (New York, NY: Basic, 1989).
38. National Foundation for Brain Research, The Costs of Disorders of the Brain (Washington, DC: 1992).
39. Nuechterlein, K.H., and Dawson, M.E., "Information Processing and Attentional Functioning in the Developmental Course of Schizophrenic Disorders," Schizophrenia Bulletin 10:160-203, 1984.
40. Parry, J.W., "Mental Disabilities Under the ADA: A Difficult Path to Follow," Mental and Physical Disability Law Reporter 17:100-112, 1993.
41. Penn, D.L., Willem Van Der Does, A.J., Spaulding, W.D. et al., "Information Processing and Social Cognitive Problem Solving in Schizophrenia: Assessment of Interrelationships and Changes Over Time," The Journal of Nervous and Mental Disease 181:13-20, 1993.
42. Regier, D.A., Narrow, W.E., Rae, D.S. et al., "The de Facto U.S. Mental and Addictive Disorders Service System: Epidemiologic Catchment Area Prospective 1-Year Prevalence Rates of Disorders and Services," Archives of General Psychiatry 5:85-94, 1993.
43. Rice, D.P., Kelman, S., Miller, L.S. et al., The Economic Costs of Alcohol and Drug Abuse and Mental Illness: 1985, report submitted to the Office of Financing and Coverage Policy, Alcohol, Drug Abuse, and Mental Health Administration, U.S. Department of Health and Human Services (San Francisco, CA: Institute for Health and Aging, University of California, 1990).
44. Robins, L.N., and Regier, D.A., Psychiatric Disorders in America: The Epidemiologic Catchment Area Study (New York, NY: The Free Press, 1991).
45. 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).
46. U.S. Congress, Office of Technology Assessment, The Biology of Mental Disorders, OTA-BA-538 (Washington, DC: Government Printing Office, September 1992).
47. U.S. Congress, Office of Technology Assessment, Benefit Design: Mental Health Services and Substance Abuse Treatment, in press.
48. U.S. Equal Employment Opportunity Commission, Washington, DC, staff communication, Oct. 14, 1993.
49. Wallace, C.J., "Psychiatric Rehabilitation: Summary for NIMH," draft report, 1993.
50. Wells, K.B., Stewart, A., and Hays, R.D., "The Functioning and Well-Being of Depressed Patients: Results of the Medical Outcomes Study," Journal of the American Medical Association 262:914-919, 1989.
51. Wexler, N.S., Beckwith, J., Cook-Deegan, R.M. et al., "Statement of Recommendations by the Joint Working Group on Ethical, Legal, and Social Issues (ELSI) Concerning Genetic Discrimination and ADA Implementation, Apr. 29, 1991," Human Genome News, September 1991.
52. Yelin, E.H., Professor of Medicine and Health Policy, University of California, San Francisco, personal communication, Aug. 25, 1993.

CHAPTER 4
THE TOOLS FOR EFFECTING EMPLOYMENT

The Americans With Disabilities Act (ADA) can be thought of as a tool box. In it exist several tools and blueprints to build a structure to end employment discrimination and provide meaningful work opportunities for people with psychiatric disabilities. Perhaps the most important implement in the ADA tool box is the law's requirement that employers provide reasonable accommodations for qualified individuals with disabilities. As with any tool, effective use of the ADA's reasonable accommodation tool requires an understanding of its potential, limits, and intended role. The next section of this chapter provides a description of the reasonable accommodation tool; a step-by-step blueprint of the accommodation process as defined by the law, research, and experience; and how these work with the building materials--the requirements of the workplace, and people with psychiatric disabilities, their abilities, impairments, experiences, and problems.

At least two issues covered by the ADA raise questions around psychiatric disability:

1) the threat of harm posed by an individual with a disability, and

2) the provision of health insurance. The second part of the chapter addresses these two issues.

EMPLOYMENT OF PEOPLE WITH PSYCHIATRIC DISABILITIES: REQUIREMENTS UNDER THE ADA

One way in which the ADA defines discrimination on the part of an employer is "not to make reasonable accommodation to the known physical or mental limitations of an otherwise qualified applicant or employee with a disability" (42 U.S.C. 12112(b)). This section discusses the legal requirement related to the disclosure of a disability, qualifications for a job, and reasonable accommodation.

Deconstruction of the legal requirements of the law into key components may assist analysis, but such dissection does not realistically reflect expression of needs, desires, limitations and decisions between an employer and applicantor employee. To a certain extent, the U.S. Equal Employment Opportunity Commission (EEOC), charged with implementing the ADA, recognized the dynamic aspects of these areas of human communication. It did not simply define the key terms listed above, but also offered guidance on how employers and applicants or employees decide these issues. It said: "[T]he appropriate reasonable accommodation is best determined through a flexible, interactive process that involves both the employer and the qualified individual with a disability" (56 FR 35748). The EEOC suggests that employers, upon request for an accommodation, should:

(1) Analyze the particular job involved and determine its purpose and essential functions;
(2) Consult with the individual with a disability to ascertain the precise job-related limitations imposed by the individual's disability and how those limitations could be overcome with a reasonable accommodation;
(3) In consultation with the individual to be accommodated, identify potential accommodations and assess the effectiveness each would have in enabling the individual to perform the essential functions of the position; and
(4) Consider the preference of the individual to be accommodated and select and implement the accommodation that is most appropriate for both the employee and the employer (56 FR 35748).

Although the ultimate decision about accommodation rests with the employer, the EEOC guides employers along a practical course, imbued by mutual input and respect for employer and employee. But even this advice reflects a linear process and hinges on adequate knowledge of the law and effective accommodations, as well as communication skills on the part of the employer and an individual with a disability. OTA has uncovered few data concerning the interactions between employers and individuals with psychiatric disabilities. Evidence from a preliminary study indicates that discussions among employers and employees about psychiatric disabilities or accommodations are rare (see reference 35). Employers may lack knowledge about mental disorders or be uncertain as to how they should address the topic. And as discussed in chapters two and three, people with psychiatric disabilities may lack self- esteem, a characteristic that they need to request accommodations.

Disclosing a Psychiatric Disability to an Employer

Before an employer provides an accommodation--and before the ADA requires one--an applicant or employee must disclose his or her need. As indicated in the EEOC guidelines:

Employers are obligated to make reasonable accommodation only to the physical or mental limitations resulting from the disability of a qualified individual with a disability that is known to the employer. Thus, an employer would not be expected to accommodate disabilities of which it is unaware. If an employee with a known disability is having difficulty performing his or her job, an employer may inquire whether the employee is in need of a reasonable accommodation. In general, however, it is the responsibility of the individual with a disability to inform the employer that an accommodation is needed (56 FR 35748).

For many individuals, revealing the presence of a disability is not a voluntary decision. Although the specific impairment and needed accommodations may not be apparent, a person in a wheelchair visibly discloses the presence of a disability. This is not the case for many people with psychiatric disabilities that are not physically obvious. Thus, disclosure is a deliberate--and often wrenching-- decision. Many factors may influence the decision to disclose, including awareness of the ADA, perceived benefits and drawbacks of disclosure, and practical decisions as to when, how much, and to whom. OTA found almost no empirical data on disclosure of psychiatric disabilities to employers, and the EEOC is largely mute on the subject. The following discussion stems from data from preliminary studies and the published or verbal testimony of people with mental disorders, rehabilitation experts, other mental health advocates, and business representatives.

Employee awareness of the ADA is the gateway to disclosure. Chapter 2 notes that considerable media attention was focused on the passage and early implementation of the ADA. Other factors suggest that at least some individuals with psychiatric disabilities are aware of the ADA: National consumer-run technical assistance centers as well as the national offices of mental health advocacy organizations have advertised and prepared information on the ADA (see chapters 2 and 5); Federal funds have been granted to two private organizations for technical assistance that focuses on the ADA and psychiatric disabilities (see chapter 5); and a sizable proportion of information requests of the Job Accommodation Network and charges of discrimination with the EEOC relate to psychiatric disabilities (figure 4-1, not available) (see chapter 3). In fact, mental illness accounted for the second highest percentage of charges of discrimination, as broken down by impairment type, filed with the EEOC to date.

Nevertheless, many people with psychiatric disabilities and employers are unaware of the ADA. Informal surveys of business representatives, and ADA and rehabilitation experts indicate that many employers and employees have no knowledge of the ADA or its coverage of people with psychiatric disabilities. Data from a recent survey of people with all disabilities showed that less than 30 percent had heard of the ADA (see reference 19). Given that awareness of the ADA is a prerequisite for invoking its protection, efforts to insure ADA awareness in business, consumer, and service organizations seems critical. Attorneys, Federal officials, rehabilitation professionals, and people with disabilities indicate that service providers can be critically important for educating people with psychiatric disabilities about the ADA (see reference 56). At the Federal level, obvious sites for increasing awareness of the ADA include: government- funded programs targeted to people with disabilities, such as the Social Security Administration's disability income maintenance programs; mental health services that receive Federal dollars from block grants and the Community Support Program (administered by the Center for Mental Health Services); protection and advocacy programs; vocational rehabilitation programs; and the EEOC (see chapter 5).

People with psychiatric disabilities, experts and advocates testify that the largest obstacle to disclosure appears to be, ironically, the ADA's intended prey: stigma and discrimination. By disclosing a psychiatric disability, an individual risks discrimination, teasing, harassment, isolation, stigmatizing assumptions about his or her ability, and the labeling of all of one's behaviors and emotions as pathological (see chapter 2) (see references 35,56,67). Data from the EEOC seem to confirm the problem that people with psychiatric disabilities have with harassment: While mental illness accounted for 7.9 percent of all ADA-related charges of discrimination received by the EEOC during the first 6 months the law was in effect, these conditions made up 12.5 percent of all ADA charges having to do with harassment (table 4-1, not available) (see reference 72). A leader in the consumer movement describes the difficulties and implications of disclosure (see reference 12):

Disclosure of one's psychiatric history is a very personal matter which can aid in one's recovery, allow reasonable accommodation under the ADA, and yet can lead to discrimination... Though I am presently open about being a mental health consumer/survivor, I only arrived at this position through a gradual process. At first I did not appreciate the stigma involved in having a psychiatric label. This quickly changed. While strolling down a corridor on pass during my first hospitalization, I met a surgeon who was a colleague of my father's and whom I had known since childhood. He asked me what brought me to the hospital. When I told him I was a patient on the psychiatric unit, a look of horror gripped his face momentarily. This expression was too quickly replaced by forced humor. `That's a good one Danny,' he laughed too loudly and briskly walked on. I knew from that time on I was branded and should not lightly share information about my hospitalization.

As indicated in the above passage, disclosure also may lead to benefits. Experts, advocates, and people with psychiatric disabilities have said that openly admitting the diagnosis of a mental disorder may enhance self-esteem, diminish shame, permit coworkers and others to offer support, and even empower another individual's revelation (see references 12,32,35,46). Data from one study of people with psychiatric disabilities participating in a vocational rehabilitation program suggested that refusal to disclose was linked to a shorter job tenure (see reference 11). Data from another study indicate that employers who knowingly hire individuals with mental disorders have a more positive attitude about accommodations and abilities of such individuals than employers who do not (see reference 7). Evidence also suggests that experience with workers who have psychiatric disabilities decreases the perception that mental illness is linked to violence or hostility (see reference 7). Important to this discussion, disclosure invokes the protection of the ADA. At least one conclusion can be drawn about the difficult decision to disclose a psychiatric disability: Research into the impact of disclosure, of which there is a dearth, undoubtedly would assist in this process.

The decision to disclose a psychiatric disability is only the first of several considerations. What exactly should one disclose? to whom? when? The EEOC suggests that "an employee needs to disclose enough information about his disability-related work limitations to support his need for accommodation" (see reference 72). Such a goal would rarely necessitate a complete medical/treatment history: "[B]ecause of the flexible nature of this process, the EEOC does not necessarily require employees to disclose specific diagnoses (psychiatric or otherwise), as a prerequisite for reasonable accommodation" (see reference 72). A recent case study found that managers of people with serious psychiatric disabilities, many of whom were referred by rehabilitation services, seem to know surprisingly little about the nature of their employees' impairment (see reference 35). This finding confirms the general experience of vocational and psychosocial rehabilitation service providers.

Care providers must also consider the question of what to disclose. The ADA permits employers to call on experts to confirm the presence of an "invisible" disability and to offer advice on reasonable accommodations. Of course, psychiatrists, psychologists, and other mental health professionals have long been involved with work-related assessments of mental health. Disclosure of a mental disorder raises a host of ethical, legal, and practical concerns, including informed consent and confidentiality (see references 50,51). Professional associations are cautious: The American Psychiatric Association's "Principles of Medical Ethics with Annotations Especially Applicable to Psychiatry" counsel psychiatrists to "fully describe the nature and purpose and lack of confidentiality of the examination to the examinee at the beginning of the examination," when evaluating individuals for job suitability or security purposes (see reference 50). The American Occupational Medical Association advises physicians to

treat as confidential whatever is learned about individuals served, releasing information only when required by law or by over-riding public health considerations . . . and should recognize that employers are entitled to counsel about the medical fitness of individuals in relation to work, but are not entitled to diagnoses or details of a specific nature (see reference 50).

The ADA tells care providers, when requested, to provide information that is sensitive to the needs of the employee and employer at work.

Like the issue of what to disclose, employees must consider when and how to do so. Should one reveal a psychiatric disability or history of one at the time of application? when hired? when an accommodation is needed? after perceiving that one has been discriminated against? Again, few research data shed light on this issue. Some people with psychiatric disabilities interviewed recently recommend waiting until after first establishing oneself as a good employee (see reference 35). While little reason, and no legal requirement exists, to disclose before an accommodation is needed, and ample reason exists not to disclose too soon, waiting too long also may be a problem. As noted at a recent OTA meeting (see reference 1):

: From the employer perspective the big concern is that these issues tend to arise when there is some kind of performance problem or conduct problem. Somebody isn't coming to work on Mondays and Fridays or is missing a lot of work, and the employer doesn't know why and begins progressive discipline. And, typically, what happens is the person doesn't say anything relating to a medical condition, and then when the axe is about to fall and termination is proposed and is imminent, all of a sudden the person says, "Wait a minute. All of my problems are due to my medical condition, my disability, and you can't discharge me."

At that point the employer's emotional reaction typically is, "Well, you never said anything about this before and it's too late." Whether or not it's too late is an interesting legal issue for the EEOC, but that's where it arises and that may be the only reason why someone may wish to disclose in advance of problems to deal partly with the legal requirement and partly with the interpersonal relationship with the employer.

An employee may also be uncertain whom to tell about a psychiatric disability. The EEOC regulations and guidelines make clear that information about a disability may be distributed to various individuals, including one's direct supervisor, who may be responsible for providing the accommodation; medical or emergency personnel, who may be called on during a crisis; and government officials investigating compliance with this and other laws. Neither guidance on who in the organization should be contacted first, nor research data on whom employees should approach and what happens as a consequence exists. Establishing a procedure for disclosure may help ease employees' tasks, and assist employers in implementing the ADA. A mental health advocate and expert explains at a recent meeting (see reference 53):

The assumption behind this discussion--that revealing a psychiatric disability is a voluntary and premeditated action--is not always correct. As noted in the ADA and relevant regulations and guidelines, information about an impairment or history of impairment may arise from a variety of sources, such as medical examinations after an offer of employment, for medical insurance or for workers' compensation purposes. Also, some people with serious psychiatric disabilities have gaps in employment history, arrest or criminal records that reflect the course of their condition. The EEOC stresses that an employer may not make pre-offer inquiries about disability, and that this prohibition extends to requests for workers' compensation records, health insurance records, references, or other relevant materials. In terms of criminal records or gaps in employment or educational history, an employer may inquire about the employment gaps and criminal records but may not ask whether they reflect the course of disability. If the applicant inadvertently discloses a disability (physical or mental), the employer may not ask follow-up questions about the disability and may not make employment decisions on the basis of the disability. Once an employer knows that an applicant has a history of disability, the employer will have to prove that this was not the reason for an adverse employment action if the individual later files an ADA charge (see reference 72).

People with psychiatric disabilities who have an arrest, criminal record, or employment history gap stemming from their disability may face the dilemma of not gaining employment because of these factors or having to disclose their disability in order to explain work history gaps, for example. The prevalence of this occurrence is unknown.

Employers may face another difficult situation related to the disclosure of a psychiatric disability. A change in behavior or performance may suggest to a coworker or employer that an employee is suffering from a psychiatric impairment. However, the employee may not recognize such symptoms or may not be willing to admit to having such a problem. Indeed, a psychiatric impairment may not exist. Under the ADA, employers are generally forbidden from inquiring about a possible impairment or disability. However, medical inquiries may be made during employment if they are job-related and consistent with business necessity. This means, according to the EEOC,

: that the inquiries must be related to the specific job at issue and must concern performance of an essential function of that job. Under this standard, medical inquiries are allowed . . . if an employee is having difficulty performing essential job functions effectively, an employer may inquire about the difficulties and whether they may have a medical cause without violating the ADA (see reference 72).

These limitations on medical inquiries offer important protection to employees with psychiatric disabilities, given the stigma attached to mental disorders, the ease with which our society equates poor job performance or unusual behavior with a mental illness, and the cultural diversity that exists in our society, which makes inferences about individual behavior difficult. Guidance from people with psychiatric disabilities, employers, and other experts on how to manage such situations, and research on the prevalence and potential outcomes would help clarify these difficult questions for employees and employers.

Qualifying for a Job

A critical question under the ADA is: "Are you qualified?" The requirements of Title I apply only to those who meet the definition of "qualified individual with a disability." The EEOC's guidance on answering it bounces back and forth between an evaluation of the individual with a disability as well as the requirements of the job (box 4-2).

The first branch of this decision tree focuses on general prerequisites of a position. As explained by the regulation, a:

: [q]ualified individual with a disability means an individual with a disability who satisfies the requisite skill, experience, education and other job-related requirements of the employment position such individual holds or desires (56 FR 35735).

That an employee must meet such basic requirements as holding a particular degree, such as an M.D. to practice medicine, or has a particular skill, such as knowing how to type for a secretarial position, is neither onerous nor surprising. Such standards have become the currency by which a minimal level of knowledge or expertise is assured. But even this most basic hurdle may be difficult for some people with psychiatric disabilities to overcome. As described in chapter 3, the onset and course of some severe psychiatric conditions interrupt educational and occupational advancement. Thus, for some people with psychiatric disabilities, the first step toward an affirmative "I am qualified" will rest on other policies and services aimed at supporting education and training (e.g., vocational and psychosocial rehabilitation, supported education).

For the person who has earned a degree and/or garnered the necessary skills and licenses, the question now becomes more specific: "Can you, with or without an accommodation, perform the essential functions of the job?" The focus is shifted to the job itself. What exactly are essential functions? The statute defines essential functions as

: the fundamental job duties of the employment position the individual with a disability holds or desires. The term "essential functions" does not include the marginal functions of the job (56 FR 35735).

The EEOC's regulatory language outlines various reasons for calling a task an essential function:

(i) The function may be essential because the reason the position exists is to perform that function;
(ii) The function may be essential because of the limited number of employees available among whom the performance of that job function can be distributed; and/or
(iii) The function may be highly specialized so that the incumbent in the position is hired for his or her expertise or ability to perform the particular function (56 FR 35735). Employer judgment, previously written job descriptions, the actual experience of a previous worker in that position, as well as time spent doing a task and implications of not doing it determine essential functions. The EEOC's guidance does not eschew employer judgment on what is essential. Rather, one way in which the law approaches the goal of nondiscrimination is by equating the defined essential components of a job with what is actually performed. An employer cannot select employees by a higher standard than he or she is in fact tolerating.

Nor is an employer obliged to lower performance standards under the ADA. To quote the EEOC's guidance:

: It is important to note that the inquiry into essential functions is not intended to second-guess an employer's business judgment with regard to production standards, whether qualitative or quantitative, nor to require employers to lower such standards . . . If an employer requires its typists to be able to accurately type 75 words per minute, it will not be called upon to explain why an inaccurate work product, or a typing speed of 65 words per minute, would not be adequate. Similarly, if a hotel requires its service workers to thoroughly clean 16 rooms per day, it will not have to explain why it requires thorough cleaning, or why it chose a 16 room rather than a 10 room requirement. However, if an employer does require accurate 75 word per minute typing or the thorough cleaning of 16 rooms, it will have to show that it actually imposes such requirements on its employees in fact, and not simply on paper. It should also be noted that, if it is alleged that the employer intentionally selected the particular level of production to exclude individuals with disabilities, the employer may have to offer a legitimate, nondiscriminatory reason for its selection (56 FR 35743).

Performance standards, especially in terms of attendance, may raise especially difficult issues for employers. Regular and predictable attendance is a standard of performance commonly viewed as essential--whether it is in the job description or not. The courts basically have upheld this position. Even so, attendance is not so easily dealt with. As noted in the previous chapter, a characteristic feature of some psychiatric disabilities as well as some other health conditions is the intermittent and often unexpected flair of symptoms, which may preclude work for a short time. People with psychiatric disabilities and others who have pulled together lists of desired or useful accommodations universally bring up occasional medical leave or part-time work. Indeed, an employer's duty of reasonable accommodation will almost certainly include the duty to tolerate additional absences. Differentiating between additional absences as a reasonable accommodation and absences as a performance problem will prove challenging to many employers.

Given the ADA's requirements, many experts and advocates advise businesses to write job descriptions and requirements before filling a position and to make sure that review of an applicant's qualifications are based on the requirements of the job. So does the EEOC:

: Although part 1630 (of the regulations) does not require employers to develop or maintain job descriptions, written job descriptions prepared before advertising or interviewing applicants for the job . . . are among the relevant evidence to be considered in determining whether a particular function is essential (56 FR 35743).

Survey data indicate that employers, especially in large businesses, have focused a considerable portion of their implementation efforts on preparing job descriptions (see reference 74). Employers--especially large employers-- increasingly summon experts to conduct job analyses to guide their hiring and employment practices.

The ADA is just the latest in a series of laws, judicial decisions, and professional trends fostering job analysis. For example, the Federal Uniform Guidelines on Employee Selection Procedures--published jointly by the U.S. Civil Service Commission, the U.S. Department of Justice, the EEOC, and the U.S. Department of Labor in 1978--specifically recognizes the relevance of job analysis in demonstrating selection procedures when an employer is charged with discriminatory hiring practices. In addition, professional guidelines issued by organizations such as the American Psychological Association, the American Educational Research Association, the National Council on Measurement in Education, and the Society for Industrial and Organizational Psychology of the American Psychological Association stress the importance of job analysis to assess the essential functions of a job.

What exactly is job analysis? Basically, it is the process of gathering and synthesizing information about job functions and the work environment. A job analysis determines the essential and nonessential job functions and forms the criteria for recruiting, selecting, accommodating, training, and determining fair wages.

There are several ways to conduct a job analysis. Typically, an expert, such as an industrial/organizational psychologist, will observe workers performing the job in question, examine the context of the job, conduct interviews with workers and their supervisors, and occasionally make use of a questionnaire to be completed by a representative sample of people currently holding the job (see references 14,20).

There are dozens of systems of job analysis. They vary widely in their objectives, theoretical foundations, and methods of data gathering and analysis. They can be divided into two general groups: "Job-oriented" systems focus on the mission, tasks, and other substantive features of jobs; "worker-oriented" systems focus on the abilities, skills, and other characteristics of the workers performing the job (see references 2,15).

Functional job analysis, a job-oriented approach developed by the U.S. Department of Labor (DOL) in the 1930s, is the most established method of job analysis. The approach is comprehensive, simple to use, and expandable. Virtually all job analysis systems have used or adapted its materials. The DOL system forms the basis of the Dictionary of Occupational Titles (DOT), which is the most comprehensive source of information on the occupational structure of the U.S. economy. The passage of time has rendered the DOT out of date, especially in regards to the cognitive, behavioral, and social demands of a job. These job components are especially relevant not only to psychiatric disabilities but to an economy that is increasingly based on services instead of manufacturing. The DOL is conducting research to improve job analysis methodology, which will provide guidance on the cognitive, behavioral, and other requirements of jobs (see reference 70). Also, DOL chartered the Advisory Panel for the Dictionary of Occupational Titles to make recommendations for a new DOT system that will reflect the changes taking place in the workplace. The advisory panel has submitted a final report to the Secretary of Labor, who will review the recommendations and develop a plan to implement a new DOT (see reference 70).

Ascertaining the psychological and social demands of a job and how well an individual meets such demands is especially relevant to people with psychiatric disabilities. Some ofthe most vexing management and legal questions also will arise around behavior. Cases under the Rehabilitation Act vividly illustrate some of the difficulties employers have encountered in managing emotional outbursts, insubordination, threats, and other erratic behavior in employees with psychiatric disabilities (see reference 10). Given such concerns, employers may be well-advised to consider carefully the specific psychological, behavioral, and social requirements of positions in their organization.

Providing Reasonable Accommodation to a Qualified Employee

The ADA requires employers to provide "reasonable accommodations" for qualified individuals with disabilities. The law equates discrimination with not making such accommodations. As the linchpin of the ADA's antidiscrimination requirement, the identification of effective accommodations for people with psychiatric disabilities becomes critical. Just as it appears that 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. Many experts and advocates note that employers are unfamiliar with the types of measures that may assist people with psychiatric disabilities in the workplace (see references 10,34,35).

A variety of workplace modifications may assist people with psychiatric disabilities. Changes to the physical environment, such as a private office or secluded work space, may be useful; however, measures such as restructuring job tasks or schedules may be required. Such "nonphysical" interventions may form "reasonable accommodations" under the ADA, according to the language of the law itself, EEOC regulations and guidelines, and case law interpretations of the Rehabilitation Act. EEOC regulations say:

Reasonable accommodation may include but is not limited to . . . [j]ob restructuring . . . [or] part-time or modified work schedules (56 FR 35736).

The guidelines go further:

: [O]ther accommodations could include permitting the use of accrued paid leave or providing additional unpaid leave for necessary treatment . . . An employer . . . may restructure a job by reallocating or redistributing nonessential, marginal job functions . . . An employer . . . may also restructure a job by altering when and/or how an essential function is performed. For example, an essential functioncustomarily performed in the early morning hours may be rescheduled until later in the day as a reasonable accommodation to a disability that precludes performance of the function at the customary hour . . . The reasonable accommodation requirement is best understood as a means by which barriers to the equal employment opportunity of an individual with a disability are removed or alleviated. These barriers may . . . be rigid work schedules that permit no flexibility as to when work is performed or when breaks may be taken, or inflexible job procedures that unduly limit the modes of communication that are used on the job, or the way in which particular tasks are accomplished (56 FR 35744).

The legal definition of accommodation, thus, makes explicit reference to adjustments useful to people with psychiatric disabilities. The question then becomes: "What measures should be enacted for a specific individual with a psychiatric disability in a specific workplace?" Of course, this question cannot be answered in the abstract, but must be addressed on an individual basis, taking into account a particular employee's limitations, abilities, and preferences, as well as the nature of the job, work site, and the employer's resources. Enumeration of potentially useful measures, however, could aid this decisionmaking process. While few data speak to the impact of such measures in a competitive work setting, OTA found that several experts and consumer groups have begun compiling lists of potentially useful accommodations, based on surveys, experience in vocational rehabilitation, and preliminary studies (see references 5,8,11,18,34, 35,46,48,59,65,69) (tables 4-2 and 4-3, not available).

All of these sources strike similar chords. In general, many accommodations address the functional limitations commonly associated with psychiatric disabilities: difficulties in concentrating, dealing with stress, and interacting with others (see chapter 3). To help an individual concentrate on work tasks, employers may: provide a private office or space for work, so as to limit interruptions and noise; maintain structure through well-defined daily task schedules; eliminate nonessential or secondary tasks that may be distracting; and minimize supervisor/coworker interruption of an employee. Accommodations that may help an employee better deal with stress include: increased positive feedback and sensitivity on the part of supervisors and coworkers; making time or other resources (e.g., support from supervisor or willing coworker; counseling services at the office) available for contacting support network (figure 4-2, not available); and permitting self-paced workload, flexible hours, and work at home (with provision of necessary technical equipment such as a computer). Orienting supervisors and coworkers may also help ease the difficulties people with psychiatric disabilities may have with interpersonal interactions (figure 4-3, not available).

Among the most common accommodations listed by experts and people with psychiatric disabilities are those that address symptoms or treatment side effects. All lists compiled include providing leave when short-term hospitalization is required to control symptoms. Other accommodations include: use of part-time work schedules, job-sharing, or more frequent breaks (for those who do not have the stamina for full-time work); flexible hours (that take into account medication side effects, such as early morning drowsiness); time off each week for clinical services; and limited night or shift work when symptoms or effects of medication interfere.

Some advocates have suggested that decreased work standards may be a useful accommodation for people with psychiatric disabilities (see reference 67). In fact, evidence from the preliminary study of people with psychiatric disabilities participating in a vocational rehabilitation program show that "accommodations" often involved modifying performance expectations (see reference 11). However, case law under the Rehabilitation Act does not appear to support compromise on legitimate performance standards to accommodate individuals with psychiatric disabilities (see reference 10). And the EEOC's statements regarding essential functions of the job indicate that the ADA does not bar legitimate productivity requirements, so long as they are enforced in a nondiscriminatory manner: "[E]mployees with disabilities should not be evaluated on a lower standard or disciplined less severely than any other employee. This is not equal employment opportunity" (see reference 73).

Lists of commonly desired or used accommodations, while aiding the decision making process, do not supplant the need for case-by-case assessment. Work places and jobs vary, as do people with psychiatric disabilities, who include a broad range of talent, ability, and functional limitations. Some individuals with psychiatric disabilities may even be insulted by the suggestion that they cannot work full time, need very detailed supervision, or should be secluded. A former director of Fountain House commented, "I have seen lists of accommodations and some seem highly unnecessary for most people such as an accommodation which arranges for a person having difficulty with people to work in isolation (see reference 54)."

The education of supervisors and coworkers emerges as a commonly cited accommodation. People often do not understand psychiatric disabilities, may feel uncomfortable around people with such a disability, fear them, or may simply not know how to act. At least two studies have shown that inservice education in higher education settings decreases fear of disruption by people with mental disorders (see references 6,75) Worksite training and orientation must proceed carefully, however. For example, coworker training may have a variety of purposes, such as dispelling the ignorance and harmful myths attached to mental disorders or providing information on how best to manage an employee with a psychiatric disability. But, focusing a training course around an individual employee identified as having a psychiatric disability may be exceedingly stigmatizing and illegal. Experience with AIDS workplace education programs shows that while effective education need not be costly (see chapter 5), simply distributing pamphlets about AIDS increased employee anxiety rather than diminishing it (see references 21,22). Also, a workplace policy defining the company's position and practices as they relate to an employee with a disability appears critical (see reference 74): It guides employee attitudes and behavior, establishes a framework for communication, instructs supervisors on how to address the issue, and lets all employees know where to go for confidential information and assistance.

Many mental health advocates and experts note the parallel between useful accommodations for people with psychiatric disabilities--such as workplace flexibility and an individualized approach to management--and good management practices that would benefit any worker. They assert that adjustments of job demands to the temperament, sensitivities, strengths, weaknesses, and preferences of a valued employee happens all the time. Data from a recent preliminary study support this observation (see reference 35). Several supervisors responded that they made accommodations to employees with psychiatric disabilities "because it made good business sense and because they made such modifications for any employee who needed them." Data from another recent study indicate that those who already employ persons with psychiatric disabilities are quite knowledgeable about the needs of these workers for accommodations, have more positive attitudes, and may be quite open to accommodating these workers if need be (see reference 7). Thus, exposure can be a critical part of the equation.

But, the apparent routine nature of such management practices is paradoxical and potentially problematic. Employers, familiar with "accommodations" that may be useful for people with psychiatric disabilities, do not equate the concept with common management practices. Also, some accommodations--such as working at home or flexible hours-- that may be necessary for a person with a psychiatric disability to perform his or her job, are desired by many employees. Coworkers may resent such "special" treatment, especially if the employee with an invisible disability has disclosed to his or her supervisor alone, and not to fellow coworkers. Data from a preliminary study have suggested that people with psychiatric disabilities can suffer negative social and/or personal consequences from receiving accommodations in the workplace, in part because of the general desirability of such accommodations (see reference 35). Perhaps the most troublesome legal issue emerges when an accommodation conflicts with a collective bargaining agreement. Shift work, office space, and leave time--all issues that may arise when accommodating people with psychiatric disabilities--are often dealt with in collective bargaining agreements. The law and EEOC regulations and guidelines have not fully addressed the overlap between collective bargaining agreements and reasonable accommodations. Clearly, further guidance is needed in managing such complexities and conflicts. The EEOC is now developing policy about reasonable accommodation and undue hardship in the context of collective bargaining agreements.

While the accommodations described thus far form an important resource for employers and employees, the information, as noted time and again in this chapter, was not derived from carefully controlled research. Questions about applicability, effectiveness, preference, and impact on the workplace are largely unaddressed. For example, many of the listed accommodations stem from the experience of people with the most severe conditions who receive a high density of services and support; the application of such accommodations to people with other types of psychiatric disabilities in the competitive work environment are unknown.

The ADA does not require businesses to enact every accommodation that an employee requests. As stated in the EEOC regulations: It is unlawful for a covered entity not to make reasonable accommodation to the known physical or mental limitations of an otherwise qualified applicant or employee with a disability, unless such covered entity can demonstrate that the accommodation would impose an undue hardship on the operation of its business (56 FR 35737).

An undue hardship refers to significant difficulty or expense incurred by a covered entity. Factors to be considered in determining an undue hardship include:

The nature and net cost of the accommodation needed under this part, taking into consideration the availability of tax credits and deductions, and/or outside funding;

The overall financial resources of the facility or facilities involved in the provision of the reasonable accommodation, the number of persons employed at such facility, and the effect on expenses and resources;

The overall financial resources of the covered entity, the overall size of the business . . . with respect to the number of its employees, and the number, type and location of its facilities;

The type of operation or operations of the covered entity, including the composition, structure and functions of the work force of such entity, and the geographic separateness and administrative or fiscal relationship of the facility or facilities in question to the covered entity; and

The impact of the accommodation upon the operation of the facility, including the impact on the ability of other employees to perform their duties and the impact on the facility's ability to conduct business (56 FR 35736).

Based on a study of the practices of 2,000 Federal contractors under the Rehabilitation Act, many claim that the cost of accommodating people with psychiatric disabilities is negligible (see reference 71). In fact, the survey data indicated that half of the accommodations made for all types of disabilities (physical and psychiatric) were cost-free; another 30 percent cost less than $500. Notably, the cost-free accommodations (e.g., changes in management practices) were among those most frequently used for people with psychiatric disabilities. These cost data, however, are not comprehensive. Estimates did not include the cost of extended leaves of absence,increased supervision, or work site training. Certainly, these accommodations can represent a significant expenditure, especially for smaller companies without extensive management resources or a large work force to absorb demands. Advocates and other experts increasingly recognize the more elusive nature of costs for accommodating people with psychiatric disabilities. As recently acknowledged by the Job Accommodation Network: "Costs usually are $0 in terms of purchasing equipment. Costs come in terms of training, absenteeism, and lost productivity." And Mancuso, a rehabilitation counselor and researcher on the ADA, notes that costs may be sustained over time: "(S)uch accommodations have the disadvantage of requiring sustained changes in practice over time. This stands in contrast to one-time, physical adaptations such as raising the height of a desk to accommodate a worker using a wheelchair (see reference 34)." More research is needed to ascertain the costs of accommodating people with psychiatric disabilities.

The EEOC's guidance on undue hardship goes beyond dollars, as indicated above: "Undue hardship" refers to any accommodation that would be unduly costly, extensive, substantial, or disruptive..." This does not translate into accommodating misperceptions and ignorance, however.

: It should be noted . . . that the employer would not be able to show undue hardship if the disruption to its employees were the result of those employees fears or prejudices toward the individual's disability and not the result of the provision of the accommodation. Nor would the employer be able to demonstrate undue hardship by showing that the provision of the accommodation has a negative impact on the morale of its other employees but not on the ability of these employees to perform their jobs (56 FR 35752).

While outright stigma and prejudice are not valid excuses for discrimination, accommodating aberrant or unusual behavior raises some difficult issues. Most lists of accommodations recognize that increased tolerance of unusual behavior is desirable. Some of the sources list conflict resolution counseling as a useful accommodation. The EEOC provides no explicit guidance on this issue. Case law under the Rehabilitation Act generally limits the employer's responsibility to accommodate disruptive behavior. Review of court decisions under the Rehabilitation Act led one legal scholar to this conclusion: When the employee's mental disability leads to episodes of disruptive behavior most decisions require little accommodation on the part of the employer, under the Rehabilitation Act . . . The holdings in these cases reflect that inappropriate behavior justifies adverse action, if the same action would have been taken in the absence of disability. (see reference 10)

Reasonable accommodation should not be equated with supported employment. Nevertheless, how the ADA deals with supported employment services may prove to be of critical importance for people with severe psychiatric disabilities. Research data and experience suggest that supported employment can assist many individuals maintaining employment (see reference 59). But, preliminary data indicate that neither employers nor people with psychiatric disabilities view supported employment as a reasonable accommodation (see reference 35). The EEOC draws a careful distinction between the two:

: The term "supported employment," which has been applied to a wide variety of programs to assist individuals with severe disabilities in both competitive and noncompetitive employment, is not synonymous with reasonable accommodation. Examples of supported employment include modified training materials, restructuring essential functions to enable an individual to perform a job, or hiring an outside professional (job coach) to assist in job training. Whether a particular form of assistance would be required as a reasonable accommodation must be determined on an individualized, case-by-case basis (56 FR 35747).

While the ADA may require some employers in large companies to provide a job coach or other supported employment service as an accommodation, undoubtedly many employers, especially those in smaller businesses, will not be required to do so, given the costs. Alternate sources of funding for supported employment services may prove critical for some people with severe psychiatric disabilities. The EEOC, in its guidance, explicitly permits alternative funding streams.

If the employer or other covered entity can show that the cost of the accommodation would impose an undue hardship, it would still be required to provide the accommodation if the funding is available from another source, e.g., a State vocational rehabilitation agency, or if Federal, State, or local tax deductions or tax credits are available to offset the cost of the accommodation (56 FR 35745). These guidelines specify two potential sources for funding: the vocational rehabilitation program and tax incentives offered to businesses. The U.S. Congress has required the Federal-State Vocational Rehabilitation program to apply supported employment services to people with the most severe disabilities and to dovetail these efforts with the requirements of the ADA (see chapter 3). In fiscal year 1993, the Federal Government provided nearly $2 billion in grants to the States for vocational rehabilitation programs; another $32 million was for development of collaborative programs to provide supported employment services. Although 42 State vocational rehabilitation agencies have funded supported employment programs since 1985, people with psychiatric disabilities can find it difficult to obtain those services (see reference 52,59). The challenge remains to gear supported employment services to people with psychiatric disabilities and for employers to tap into such services, through State vocational rehabilitation, mental health agencies, and other providers.

Three types of Federal tax assistance are available to businesses to reduce the costs of accommodating people with disabilities in the workplace. Under section 51 of the Federal Internal Revenue Tax Code, businesses may be eligible for a Targeted Jobs Tax Credit of 40 percent of up to $6,000 of an employee's first year of wages when hiring people with disabilities and other groups of individuals with special employment needs. Under section 190 of the Internal Revenue Tax Code, businesses may be eligible for a tax deduction of up to $15,000 for costs incurred to remove architectural and transportation barriers from the workplace. And, a few months after the ADA was passed, Congress created a new tax credit, specifically aimed at small businesses. The Omnibus Reconciliation Act of 1990 (P.L. 101-508) added section 44 to the Federal Internal Revenue Tax Code, allowing eligible small businesses a tax credit equal to one-half of expenditures in excess of $250 but not greater than $10,250 to reduce the costs of providing access to people with disabilities in the workplace. In general, these methods of tax assistance have rarely if ever been applied to the accommodation of people with psychiatric disabilities (see references 24,43).

SPECIAL CONCERNS RAISED BY THE ADA Employment is not simply a matter of doing one's job and being paid for it. A wide assortment of benefits and issues emerge directly or tangentially from work. Thus, the ADA impinges on a variety of issues, many of which have not beenthoroughly considered to date. Two specific issues, which are critically important to people with psychiatric disabilities as well as employers, warrant attention: the direct threat standard in the ADA, and employer-provided health insurance. Employers are understandably concerned about the risk of violence in the workplace. On the other hand, people with psychiatric disabilities, their family members, and advocates protest the stigmatizing and exaggerated perception of the people with mental disorders as being violent. Similarly, while employers voice concern about the costs of health insurance, mental health advocates cite the need for improved mental health benefits. The following sections discuss the ADA's impact on these areas as well as the relevant information concerning psychiatric disabilities.

The ADA's Direct Threat Standard and Psychiatric Disability

While it is "unlawful for [an employer] to discriminate on the basis of disability against a qualified individual with a disability," under the ADA, employers may include as a qualification standard "a requirement that an individual shall not pose a direct threat in the workplace." The EEOC defines direct threat in the regulations as:

: ...a significant risk of substantial harm to the health or safety of the individual or others that cannot be eliminated or reduced by reasonable accommodation (56 FR 35736).

The EEOC's inclusion of direct threat to self as well as others led to an outcry from many people with psychiatric disabilities and other mental health advocates. Opponents to the EEOC's position note that it encourages employer paternalism (see references 47,53). The fact that paternalistic powers formed the rationale for involuntary hospitalization of mental patients in the past, and dangerousness to self is a common criterion for involuntary commitment, heightened sensitivity to this issue (see reference 3). Legal experts and mental health advocates also claim that the EEOC's interpretation goes well beyond the law's language and intent. The ADA makes no mention of direct threat to self: "The term `qualification standards' may include a requirement that an individual shall not pose a direct threat to the health or safety of other individuals in the workplace." The U.S. Department of Justice's Title II regulations also do not mention direct threat to self. In its own defense, the EEOC notes that this interpretation is consistent with the legislative history of the ADA and caselaw interpreting section 504 of the Rehabilitation Act. In fact, one of the few cases involving psychiatric disabilities turned on proof of a direct threat to self: Doe v. New York University, 666 F.2d 761, 777 (2d Cir. 1981). An academically gifted but suicidal and self-destructive medical student sought readmission to NYU Medical School as a remedy for alleged discrimination in violation of the Rehabilitation Act. The court found that the individual was not qualified for readmission because she could not handle the inevitable stresses of medical school without posing a danger to herself or others, thus subjecting the medical school to liability for knowingly permitting such exposure (see reference 10). The concern about employer liability was reasserted at a recent OTA workshop by one of the original authors of the EEOC regulations:

: The bottom line for me on this issue is this: I'll make an analogy. If anybody in this room wants to go sky diving, you can do it. And before you board that plane, you're going to sign a waiver of liability that is as long as your arm, and those waivers are enforceable . . . But if you want to go to work and you actually pose, in the words of the Commission's regulations, a high probability of substantial harm to yourself in doing your job, you cannot waive your right to Workers' Compensation . . . the reality is that in the workplace the employer's got to pay the bill if you get injured . . . The employer cannot make the employee waive that (see reference 1).

Experts and advocates on both sides concede that the issue likely will be decided by the courts (see references 47,67).

The EEOC regulations and guidelines procedurally narrow the definition of direct threat: "Direct threat means a significant risk of substantial harm that cannot be eliminated or reduced by reasonable accommodation" (56 FR 35376). Thus, the risk need not be eliminated entirely to fall below the direct threat definition; instead, the risk need only be reduced to the level at which there no longer exists a significant risk of substantial harm.

The direct threat standard "must apply to all individuals, not just to individuals with disabilities" (56 FR 35745). A direct threat determination must be based on "an individualized assessment of the individual's present ability to safely perform the essential functions of the job" (56 FR 35736). This clarifies that a determination that employment of an individual would pose a direct threat must involve an individualized inquiry and must be based on the individual's current condition. This is reinforced in the interpretive guidance. Furthermore, the interpretive guidance indicates that "[r]elevant evidence may include input from the individual with a disability, the experience of the individual with a disability in previous similar positions, and opinions of medical doctors, rehabilitation counselors, or physical therapists who have expertise in the disability involved and/or direct knowledge of the individual with the disability" (56 FR 35745). Factors to be considered when determining whether employment of an individual would pose a direct threat includes "the imminence of potential harm" (56 FR 35736).

These guidelines attempt to limit speculative assertions of risk or the application of stereotypic assumptions about such risk. One of the few examples to be found in the EEOC's regulations or guidelines pertaining to psychiatric disabilities illustrates this point further: "[A] law firm could not reject an applicant with a history of a disabling mental illness based on a generalized fear that the stress of trying to make partner might trigger a relapse of the individual's mental illness."

Concerns about danger to others can arise in a variety of contexts, depending on the functions of the job. For example, difficulties in concentration may pose a "direct threat" if the individual is operating heavy equipment. However, if any one stereotype of mental illness is most prevalent and damaging, it is that of the homicidal maniac. As evident to any patron of the news and entertainment media in the U.S.--and supported by research data--the image of people with mental disorders most often relayed to the public is a violent and deranged one (see reference 66). Results from a 1990 nationwide telephone survey indicate that the majority of the American public links mental illness to violence (see reference 33). Stigma-busting campaigns have been aimed at dispelling this cruel and exaggerated stereotype. The message in those campaigns is: People with mental disorders are no more violent than the average person.

Nevertheless, mental illness is sometimes associated with violent behavior. Supporting data are accruing, often from the research efforts of those who did not anticipate or desire the result. Several types of studies support the link between mental illness and violent behavior, including those evaluating arrest and jail rates of people with mental disorders, and hospital and community-based surveys (see references 31,40,63). For example, data indicate that people with mental disorders experience higher arrest and imprisonment rates for minor offenses and violent crimes (see references 27,28,29,36,49,60,61). People with serious mental disorders constitute 5 to 15 percent or more of the jail and prison population in the U.S. (see reference 25,62).

Despite the consistent finding in the 1970s and 80s that mental disorders have some link to violent behavior, many of these studies suffer serious methodological weaknesses, including inadequate definition of violence and selection bias. More recently, however, data from two large and methodologically sound studies confirm the findings from the early, imperfect efforts (see references 31,58). Data from the ECA study--a large, community-based survey--demonstrated a statistically significant link between some mental disorders and self-reports of violent acts (see reference 58). Link and colleagues compared violent behavior among people who currently were or had been in treatment for mental disorders and people who were never treated. The subjects with mental disorders and controls were matched for various demographic characteristics, treatment status was assessed, and carefully drawn measures of violence included official and self-reports of arrest rates, as well as self reports of fighting, hitting others, and weapon use. While confirming the importance of social and demographic factors in violent behavior, the data show a significant, if modest, link between all measures of violence and mental disorders. It turned out that only those experiencing recent psychotic symptoms showed elevated rates of violence. Data from another study suggest that specific aspects of psychosis-- when a person feels personally threatened or the intrusion of thoughts that can override self-control--are linked to violence (see reference 33).

Taken together, the available data impute a relationship between mental disorders--especially, psychotic disorders-- and violent behavior. The limits of these data must be emphasized. First, the demonstrated link is modest at best: Demographic factors, substance abuse, and a history of violent behavior are far more tightly correlated to violence in people with and without psychiatric disabilities. Secondly, the assertion that most people with mental disorders are not violent remains unchallenged. Finally, and relevant to this discussion, none of these data emerge from research in the workplace.

Evidence of a correlation between mental illness and violence certainly does not translate into ADA-sanctioned exclusion of people with these conditions from the workplace. As mentioned above, individualized assessment of imminent, significant risk of substantial harm constitutes the EEOC's standard. The EEOC guidelines also allow for the expert opinion of medical and other professionals in carrying out this standard. However, performance of this task has been surrounded by nearly as much controversy and doubt as the link between mental illness and violence.

How well can clinicians predict future violence by people with mental disorders? The prevailing opinion has been "not well at all." In large part this lack of confidence was based on a review of research published in 1981 (see reference 38). Monahan, a leading researcher in the field, concluded that for every time a clinician correctly predicts violent behavior, he or she would be wrong two times. More recent data paint a somewhat more optimistic picture of clinician assessment of violent behavior. While the studies reviewed by Monahan focused largely on institutionalized patients and the assessment of violent behavior over the long term, more recent efforts focus on more specifically drawn measures of violent behavior in the short term. For example, data from a large sample of individuals with mental disorders, recruited to the study from emergency room admissions, demonstrated clinician accuracy in predicting violence over the next 6 months significantly better than chance, at least for male patients (see reference 30). Similarly, prediction accuracy exceeded that of chance in a study of post-hospitalization adjustment of people with mental disorders over the course of 6 to 12 months (see reference 26). These and other data imply, in the words of one reviewer, "that the use of actuarial data and techniques may result in predictions whose accuracy exceeds chance" (see reference 45).

This conclusion is hardly a ringing endorsement. Indeed, there are important caveats. First, further research is crucial for identifying the variables that may lead to more accurate prediction. Factors other than mental health status, such as a past history of violent behavior and substance abuse, are linked to violence, and undoubtedly must be included in any attempts to predict violence. Situational and interactional variables are known to be important contributors to violent behavior and must be considered (see references 39,44). Furthermore, situational and interpersonal factors will highlight many of the accommodations that may reduce the threat of harm. Results from a MacArthur Foundation- and NIMH-funded study will be available in 1996 (see references 41,57); they will likely shed light on the process of predicting violent behavior in people with mental disorders. Even with better methods, the prediction of violence will never be error free. Thus, the acceptable level of accuracy for disqualifying someone from work will require consideration of ethical, legal, and public policy concerns (see reference 17).

The issue of the risk of violence and its treatment warrants special attention, as people with disabilities, advocates, experts, and employers have raised concerns. Are employers required to provide treatment to employees who present a direct threat? Are employees required to take medication in order to maintain their jobs? Can employers monitor medications as a reasonable accommodation for employees who have posed a direct threat without medication and who have a history of failing to take medications? While the legal questions are complicated, controversial, and unanswered, there can be no doubt that this issue will arise. The EEOC does not require employers to provide treatment as a reasonable accommodation (see next section); however, the Commission has not yet taken a position on whether employees can be required to take medications to keep their jobs (see reference 72). OTA interviews of various vocational rehabilitation professionals and other experts and advocates also reveal that treatment compliance is a very real issue. People with mental disorders often do not comply with prescribed treatment, for reasons that can include denial of a chronic illness, or intolerance of side effects (see references 9,13,16). And the data linking mental illness to violence suggest that severe symptoms and nontreatment do play a role (see references 31,63). Research and full discussion of this issue are clearly needed.

Where do we stand? This review of the research literature bespeaks limited gains in understanding the link between mental illness and violence. Critical questions remain unanswered about the specific predictors and modifiers of threatening behavior.

Health Insurance for People With Psychiatric Disabilities

Health insurance is typically considered a privilege of employment. And the ADA prohibits "discrimination against a qualified individual with a disability in regard to... privileges of employment" (42 U.S.C. 12112(a)). (See footnote 9, not available) Federal regulations and interim guidance recently drawn up by the EEOC echoes the ADA's stance against insurance exclusions used as a subterfuge to evade the purpose of Title I. To this end, EEOC regulations specifically prohibit various discriminatory practices. For example, employers may not:

make employment decisions based on potential increases in health insurance premiums;
limit health insurance eligibility on the basis of voluntary medical examinations in employee health programs; or
deny a qualified individual with a disability equal access to the same terms or conditions of insurance that other employees enjoy.

It should come as no surprise that the prospect of ADA-compelled health benefit reform allured disability rights advocates. In fact, lists compiled by people with psychiatric disabilities and other mental health advocates often include better health insurance coverage as a useful and desired accommodation. The barrier to affordable health insurance that millions of Americans currently confront is a familiar problem for people with disabilities; they have long endured exclusions and limitations from private sector coverage (see reference 42). For people with psychiatric disabilities, the situation is even worse. Data and analyses clearly document the limitations commonly placed on mental health benefits by such means as high co-payments, large deductibles, and separate (usually lower) limits on annual and lifetime expenditures or services (see references 55,68). Caps on mental health benefits reflect insurer concerns about uncontrollable costs and the ill-defined nature of some disorders; the evolution and availability of a public sector system of care and the apparent lack of public demand for more generous coverage are also a factor. Many also attribute the inequity to discrimination (see references 55,66).

While the need for improved access to mental health care may make a compelling case for health care reform, the question remains as to what role the ADA can or should play in achieving this goal. The language of the law, its legislative history, and related regulations and guidelines indicate that the ADA does not intend a complete revision of insurance industry policy and practice (see reference 4). As stated in the law and EEOC regulations:

[T]he act shall not prohibit or restrict:

(1) an insurer, hospital or medical service company, health maintenance organization, or an agent or entity that administers benefit plans, or similar organizations fromunderwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State law; or
(2) a person or organization covered by this Act from establishing, sponsoring, observing or administering the terms of a bona fide benefit plan that are based on underwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State law; or
(3) a person or organization covered by this Act from establishing, sponsoring, observing or administering the term of a bona fide benefit plan that is not subject to State laws that regulate insurance. (56 FR 35739)

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 require access to mental health insurance. The regulations clearly allow traditional insurance practices of preexisting condition clauses, underwriting and risk assessment and classification and ERISA-regulated, self- insured plans, "even if they result in limitations on individuals with disabilities." Essentially, the law requires that an employer offer the same benefits to all employees. This does not provide a carte blanche for disparate health insurance coverage on the basis of disability. According to interim guidance from the EEOC, employers must demonstrate that the disability-based distinctions in coverage are fiscally necessary (N-915.002).

Because the employer has control of the risk assessment, actuarial, and/or claims data relied upon in adopting a disability-based distinction, the burden of proof should rest with the employer . . . If the employer asserts that the disability-based distinction was necessary to prevent the occurrence of an unacceptable change in coverage or premiums, or to assure the fiscal soundness of the insurance plan, the evidence presented should include nondisability- based options for modifying the insurance plan and the factual data that supports the assumptions and/or conclusions.

How might the ADA be used to influence mental health benefits? One question to consider 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 resoundingly "no" for mental health benefits in general (N-915.002).

: [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.

This interpretation of the ADA seems to leave little room for using this tool to abolish the traditional disparity between mental health benefits and other health benefits. It is important to note that advocates argue that this analysis is specious. For many disabled people with mental disorders who are otherwise qualified for a job, the lack, inequity, or insuffiency of insurance coverage is the barrier to employment (see reference 23). Furthermore, the people with the most severe and chronic conditions are most affected by restricted mental health benefits.

What proves to be an interesting question under the ADA, especially for people with psychiatric disabilities, is whether providing some health care could be construed to be a reasonable accommodation, and thus required of the employer, absent undue hardship. Health care benefits are generally provided by employers. Chapter 3 noted data that show treatment is often important for controlling the clinical symptoms of mental disorders and may be linked to work functioning. And as discussed in this chapter, treatment may figure prominently in controlling symptoms related to harmful behavior. One legal expert's review led to the conclusion:

: Can employees expect an employer to pay for medication or provide insurance that will pay for such medications? To date, there is no good answer to that question in the statute, its regulations, or the case law. Logically, it would seem that if the expense to the employer is reasonable, perhaps only slightly more than what the employer pays for other employees' health care, such an accommodation is required (see reference 47).

Another view is that "that's the kind of personal service ruled out . . . [It] goes beyond . . . removing a barrier caused by the workplace or the way work is customarily performed, which is . . . the lode star for reasonable accommodation (see reference 1)." Guidelines prepared by the EEOC indicate that employer provision of medication is not, in the view of the agency, a reasonable accommodation:

The obligation to make reasonable accommodation is a form of nondiscrimination. It applies to all employment decisions and to the job application process. This obligation does not extend to the provision of adjustments or modifications that are primarily for the personal benefit of the individual with a disability. Thus, if an adjustment or modification is job-related, e.g., specifically assists the individual in performing the duties of a particular job, it will be considered a type of reasonable accommodation. On the other hand, if an adjustment or modification assists the individual throughout his or her daily activities, on and off the job, it will be considered a personal item that the employer is not required to provide. Accordingly, an employer would generally not be required to provide an employee with a disability with a prosthetic limb, wheelchair, or eyeglasses (56 FR 35747).

Given the conflicting viewpoints, it may be that the courts will be called upon to interpret the Act. Considering medications a reasonable accommodation may be opposed by some advocacy groups who worry about coerciveness and psychiatric treatment. The distinction between providing a medication as an accommodation and requiring an individual to take a medication to keep his or her job may be viewed as a slippery slope. A consumer spokesperson said, "I can imagine a scenario in which `reasonable accommodation' is deemed to mean that the employee must take psychotropic medication as a condition of employment. Given the many negative `side effects' of these medications, it can create a negative cycle of further impairment, especially when the person identified as psychiatrically disabled feels coerced or is forced into taking these drugs" (see reference 64). Representatives of small businesses also express reluctance in further involving employers in clinical care (see reference 43). Clearly, the ADA will address some of the health benefit practices that are disability-based. But the Act's jurisdiction over employer-provided health benefits is explicitly circumscribed. Achieving insurance parity for mental health benefits under the ADA appears even less likely. These limitations and uncertainties have served to focus the attention of advocates and experts on health care reform efforts in general. As stated by an EEOC representative at a recent meeting: "[W]hatever we say about health insurance at this point is like the tail wagging the dog, because the real discussion about what's happening . . . is taking place elsewhere (see reference 37)." However, if health care reforms are too costly, too limited, or occur too slowly, people with psychiatric disabilities may be motivated to seek adequate treatment via this route.

SUMMARY AND CONCLUSIONS

OTA's analysis points out many unanswered questions concerning psychiatric disability, the workplace, and the ADA (see table 4-4, not available). First, a better characterization of the questions, concerns, and current practices around disclosure and accommodation is needed. Information derived from workshops, surveys, and case studies on disclosure, accommodation practices, and problems could guide further research and those who are implementing the ADA. The most useful information will come from forums representing the full range of viewpoints and concerns. This includes people with disabilities, managers and supervisors, coworkers, and mental health and legal professionals. It also requires consideration of such sensitive issues as confronting an individual about an undisclosed disability, the impact of psychiatric disability on performance, possible behavioral problems, and potential coworker fear or resentment of accommodations.

Even though we know that much more knowledge is needed, implementation must move forward. This chapter points to a substantial amount of information to aid in that goal. Consumer organizations, experts, and researchers have compiled lists of useful accommodations for people with psychiatric disabilities. Because research indicates considerable ignorance about the ADA, the challenge is to disseminate this information to people with psychiatric disabilities and employers, and to increase awareness and understanding about psychiatric disabilities among employers and coworkers. The Federal Government can assist by building on current ADA technical assistance [e.g., by NIDRR and the EEOC (see chapter 5)] and strengthening existing ties in thecommunity, including consumer organizations (see chapter 2), mental health and rehabilitation services in States, counties, and local communities [e.g., funded by CMHS, NIMH, NIDRR (see chapter 5)]. Because the impact of education such as teaching coworkers about psychiatric disabilities, is unknown, such education needs to be evaluated.

The chapter ends with a discussion of two issues raised by the ADA and of keen interest to people with psychiatric disabilities: the threat of violence and employer-based mental health benefits. People with mental disorders, their families, and others decry the media's stereotyping of people with these conditions as violent. Because the ADA includes as a qualification standard "a requirement that an individual shall not pose a direct threat in the workplace," the question of the link between violent behavior and mental illness becomes relevant. Recent data and reviews of research indicate a link between the threat of violence and some mental disorders. Given the prevailing stereotype, it must be emphasized that the link is modest--demographic factors, substance abuse, and a history of violent behavior are far more tightly correlated to violence. In addition, violence appears to be related to a small subset of psychotic conditions and symptoms. Clearly, the correlation between mental illness and violence does not translate into ADA-sanctioned exclusion of people with these conditions from the workplace: The EEOC's regulations and guidelines narrow the definition of direct threat to one that is substantial, imminent, individually determined, and not abated by accommodation. Furthermore, the law and research in this area raise questions concerning the prediction of violence, the link between violence and mental illness in the workplace, and treatment issues in the workplace.

Mental health benefits are another key issue for people with mental disorders in general and under the ADA. Mental health benefits are commonly limited, compared to general health coverage, with the result that people sometimes do not receive treatment. Access to effective treatment will be important for many people with psychiatric disabilities to gain and maintain employment (see chapter 3). Although the ADA prohibits various discriminatory practices in terms of employer-provided health insurance, the law, its legislative history, and interim guidance from the EEOC enjoin against its use to abolish the traditional disparity between mental health benefits and other types of benefits. Furthermore, guidelines from the EEOC indicate that the provision of medication is not a reasonable accommodation.

CHAPTER 4 REFERENCES

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37. Mastroianni, P.R., Assistant Legal Counsel, ADA Policy Division, U.S. Equal Employment Opportunity Commission, Washington, DC, remarks at "Americans With Disabilities Act, Mental Illness, and Employment," a workshop sponsored by the Office of Technology Assessment, U.S. Congress, Apr. 21, 1993.
38. Monahan, J., Clinical Prediction of Violent Behavior (Washington, DC: U.S. Government Printing Office, 1981).
39. Monahan, J., "Dangerous and Violent Behavior," Occupational Medicine: State-of-the-Art Reviews 1:559-568, 1986.
40. Monahan, J., "Mental Disorder and Violent Behavior," American Psychologist 47:511- 521, 1992.
41. Monahan, J., and Steadman, H.J., "Toward a Rejuvenation of Risk Assessment Research," Violence and Mental Disorder: Developments in Risk Assessment, J. Monahan and H. Steadman (eds.) (Chicago, IL: University of Chicago Press, in press).
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CHAPTER 5
RELEVANT FEDERAL AGENCIES' ACTIVITIES

The Americans With Disabilities Act's (ADA's) success depends on many individuals and organizations. Employers and people with disabilities who educate themselves about the law and comply voluntarily will be most important. Consumer, advocacy, and business organizations can assist employers and people with disabilities by providing materials and other forms of educational outreach. State and local governments, who must also meet ADA requirements, will further extend knowledge of and compliance with the ADA by dove tailing their disability programs and business support activities with the law.

The Federal Government must also play a role in translating the law's vision into reality. The ADA requires the Federal Government to prepare regulations and guidelines to implement the law; to enforce the law; to assist those with rights and responsibilities under the law; and to coordinate their enforcement and technical assistance efforts. In addition to these requirements, specified by the ADA itself, the U.S. Congress has ordered Federal research and service agencies to provide technical assistance and to conform their activities with the ADA's mission. Furthermore, the Federal Government is a key source of monetary support for ADA and employment research.

This chapter describes Federal activities relevant to Title I of the ADA and psychiatric disabilities. The agencies and offices discussed in this review are as follows:

U.S. Equal Employment Opportunity Commission (EEOC);

National Institute on Disability and Rehabilitation Research (NIDRR);
Center for Mental Health Services (CMHS);
National Institute of Mental Health (NIMH); and
President's Committee for the Employment of People with Disabilities (President's Committee). The chapter also briefly discusses the research efforts of the National Institute for Occupational Safety and Health (NIOSH). Of course, not every ADA activity supported by the Federal Government is reviewed. Federal programs that collect disability statistics were discussed in chapter three; and although the National Council on Disability (NCOD) is among the Federal Government's most prominent ADA actors, the agency does not devote any special attention to psychiatric disabilities and Title I of the ADA. The U.S. Department of Justice--another key player under the ADA-- also is not discussed, as its efforts do not focus on employment.

While the ADA clearly assigns to the EEOC the enforcement of Title I, technical assistance and research responsibilities do not neatly disperse among the various agencies listed above. Before commencing an agency by agency review, this section takes a closer look at technical assistance and research activities.

"Technical assistance" includes just about any form of information dissemination: brochures, public and video presentations, conferences, training programs, toll-free help lines, computer bulletin boards, clearing house activities, posters, or manuals. Compliance with the requirements of a new statute like the ADA depends on awareness and understanding by people whom the law affects. The minimal impact of the Rehabilitation Act's antidiscrimination provisions reflects, in part, the general lack of awareness of this law (see reference 21) (see chapter 2). The congressional sponsors of the ADA were well aware of the importance of technical assistance, mandating such activities in the language of the law and in other legislation.

Executive branch agencies have responded to the call for technical assistance with a veritable blizzard of materials and activities (see references 16,30). But surveys of businesses and individuals indicate that the campaign has been inadequate (see references 2,5,8). For example, results from a survey of businesses employing 25 or more individuals revealed that nearly 40 percent of the respondents had little awareness of the ADA (see reference 5). Also, a recent Harris poll found that only 30 percent of people with disabilities had heard or read about the ADA (see reference 6). Corroborating these observations, a recent report that assessed Federal ADA activities concluded: "The need for information and technical assistance continues to grow, outstripping Federal and State resources" (see reference 16). The report highlighted the need for information aimed at small businesses and minorities with disabilities, as well as the requirement for more sophisticated information that focused on specific kinds of disabilities and complex provisions of the ADA (e.g., health insurance, workers' compensation, and collective bargaining agreements).

Information on psychiatric disabilities and the ADA rank among the most critical of technical assistance needs (see reference 10). As noted in previous chapters, mental disorders and psychiatric disabilities are poorly understood and greatly stigmatized in our society (see chapter 2). With their impact on behavior and social interactions, they raise difficult and somewhat unique employment issues (see chapters 3 and 4) that cry out for technical assistance. Although fairly primitive and generally not critical in its analysis, the response has begun (see reference 19). For example, in 1992 the Bazelon Center for Mental Health Law published Mental Health Consumers in the Workplace: How the Americans With Disabilities Act Protects You Against Employment Discrimination for consumers (see reference 13). In 1993, The American Bar Association and National Mental Health Association published The ADA and People With Mental Illness: A Resource Manual for Employers (see reference 33). And NIDRR funded a technical assistance center with the Washington Business Group on Health (see later discussion).

It is important to keep in mind that the type of technical assistance needed varies, depending on the target audiences' expertise, available resources, and role in implementing the ADA. For example, what will help businesses with fewer than 100 employees differs from that which will assist larger firms. Smaller firms are much more limited in the time, staff, or money that they can devote to learning about a new law and complex area of disability.

In considering the Federal Government's psychiatric disability research efforts, estimates of total Federal expenditures on disability-related research provide a useful perspective. Comprehensive estimates, however, are not easy to derive, given the diverse range of conditions, methods, and sponsors that constitute the disability research enterprise. OTA, citing a survey by the National Institute of Handicapped Research (NIHR, now NIDRR), proffered one of the most comprehensive estimates of Federal disability research dollars more than 10 years ago (see reference 22). According to the NIHR survey, 16 agencies and offices devoted nearly $66 millionto disability- related research in fiscal year 1979. Nearly half of that amount -- $31.7 million--was provided by NIHR. A 1991 Institute of Medicine (IOM) report provides a more recent (if less complete) tally of disability research expenditures (see reference 7): NIDRR spent $60 million in fiscal year 1990, which reflects a 10-percent increase from 1979, when adjusted for inflation. The U.S. Veterans Administration devoted $22 million to disability-related research in that same year. In addition, the National Institutes of Health estimated that $78 million was spent over several years on rehabilitation research projects beginning in 1984.

Analysts repeatedly have concluded that the Federal Government's disability research expenditures are much less than the amounts spent on health care research in general or the economic toll of these conditions. For example, the 1982 OTA study estimated that Federal funds spent on disability-related research equaled less than 1 percent of all health-care research dollars, and more recent computations show that the cost of disabilities to the nation each year is 1,000 times higher than the public funds spent on disability research (see references 7,22). Specifically, disability research receives no more than $200 million annually from the Federal Government, while disabilities cost our society an estimated $200 billion each year, including health care expenditures, lost or diminished productivity, and income maintenance (see reference 7). Given these expenses and other factors, OTA's conclusion from the 1982 study holds true today:

: The amount of funds devoted to research and development in the disability area is quite small in comparison to the number of people affected, the complexity of the research problems involved, and the total health-care research and development budget.

Many of the characteristics of disability research in general hold true for the psychiatric disability research enterprise: A diverse range of approaches is involved, as described later in the chapter. And despite the costs imposed by mental disorders -- an estimated $136.1 billion in 1991, with the largest part, $60 billion, stemming from lost or diminished productivity -- only $14.3 million are available for research (see references 17,18,23). Those funds total approximately 1.3 percent of the combined total annual budgets of NIDRR, CMHS, and NIMH -- the key Federal funders of research (and technical assistance) related to mental disorders and disability -- devoted to issues directly relevant to psychiatric disability and employment (table 5- 1, not available). Moreover, research on employment and mental disorders is fragmented within the Federal Government, with little interagency coordination and no agency or office currently offering leadership or making this issue a priority ( box 5- 1).

U.S. EQUAL EMPLOYMENT OPPORTUNITY COMMISSION

Established by law in 1964, the EEOC, or Commission, enforces Title I of the ADA, as well as Title VII of the Civil Rights Act, the Age Discrimination in Employment Act, section 501 of the Rehabilitation Act, and the equal pay provisions of the Fair Labor Standards Act. The EEOC is composed of five individuals (no more than three from one political party) (figure 5-1, not available),with the chair and vice-chair designated by the U.S. President. As of this writing, no new Chair of the EEOC has been appointed. In addition to national headquarters staff, the Commission has field offices in all 50 States.

The Commission's enforcement of Title I of the ADA, as spelled out by the statute, involves issuing regulations, providing technical assistance to covered entities and people protected by the law, and coordinating activities with the U.S. Departments of Justice and Labor. As noted in the 1993 NCOD report, the EEOC's regulations were issued in the time frame required by the law, and technical assistance activities have been extensive. However, and as documented throughout this OTA report, the regulations, guidance, and technical assistance promulgated by the EEOC provide minimal guidance on many issues specifically relevant to psychiatric disabilities. As reiterated throughout this report, the complexity of psychiatric disabilities and the general lack of knowledge about these conditions engenders the need for further information and guidance, an observation shared by the EEOC itself. "Cases involving individuals with alleged mental disabilities are frequently more complicated than those involving physical disabilities. Investigators may require more time to determine whether a mental impairment exists, whether a disability exists, and whether an individual with a mental disability is qualified (which may involve consideration of whether a reasonable accommodation is needed, and if so, what would be an effective accommodation)" (see references 24,31). This concern is magnified by the fact that charges related to psychiatric disabilities account for approximately 10 percent of all charges, second only to back problems (see chapters 3 and 4). The EEOC's budget, in fiscal year 1991, was approximately $200 million, with $1 million provided to begin the required preparations for implementing the ADA. In addition, in fiscal year 1991, Congress provided EEOC $3.6 million in supplemental funding. In fiscal year 1992, Congress appropriated a total of $211 million, with $4 million for ADA implementation. The EEOC also received a supplemental appropriation providing $1 million available through fiscal year 1993. A total of $222 million was appropriated to the EEOC for fiscal year 1993.

Many analysts have concluded that despite these appropriation increases, the EEOC is under considerable fiscal and staffing strain (e.g., references 1,19,20). Between fiscal year 1981 and 1992, while the average annual real rate of the total EEOC budget increased 8.13 percent, staff were being significantly reduced (figure 5-2). Between fiscal year 1980 and fiscal year 1991, staff was reduced by 594 full-time equivalents--a 17.5 percent decrease. Although the U.S. Congress provided for 32 additional staff positions for ADA implementation in fiscal year 1992, total staff fell from 2,853 in 1990 to 2,791 in 1992. The overall decreases in staff--which with rent, communications, and utilities consume approximately 90 percent of the total budget--were mirrored in the number of investigators. In the field offices, assigned enforcement investigators dropped from 949 in fiscal year 1988 to 782 in 1992, a 17.6 percent decrease. At the same time its staff was being reduced, the EEOC was given more responsibilities--enforcement of the ADA and the Civil Rights Act of 1991. Overall charges of discrimination received by the EEOC increased by 13 percent between fiscal year 1991 and 1992 and continue to rise (see reference 31).

These staff and budget figures have significant implications for ADA enforcement and technical assistance activities of the EEOC. For example, the staffing constraints curtail the time available for investigation of charges and conciliation efforts (see references 20,31). These constraints are likely to have a particularly acute impact on the investigation of complaints relating to psychiatric disabilities, which raise complex issues and require more time for investigation than other disabilities. Additional technical assistance and monitoring or other research efforts are also likely to be restricted.

Title I of the ADA orders the EEOC to use the same enforcement procedures as used for Title VII of the Civil Rights Act of 1964. In general, charges are received and investigated by the field and headquarters offices. The EEOC's 1992 Technical Assistance Manual provides a detailed description of the enforcement process, which is summarized below (see reference 30).

The process begins when an applicant or employee files a charge of discrimination with the EEOC. A group or organization may also file a charge on behalf of an individual. Commissioners also may file charges when they have evidence of discrimination but no charging party. It is incumbent upon the charging party to file with the EEOC within 180 days of an alleged discriminatory act. Charges, including basic identifying information, the nature of the alleged discrimination, and the disability involved, can be filed in person, by telephone, or by mail.

Investigating officers in the field offices investigate each claim: They review the written charge and interview the charging party, witnesses, and the employer or alleged discriminator (the respondent). In approximately 95 percent of charges, the investigator finds no cause to believe discrimination occurred under the statutory definition. The charging party still maintains the right to sue privately, however.

In approximately 5 percent of cases in which the investigator finds reasonable cause to believe discrimination has occurred, the EEOC attempts to resolve the issue and to avoid litigation. If conciliation fails, the EEOC may file a lawsuit on behalf of the charging party, or it may issue a right-to-sue letter to the charging party. Most charges are conciliated or settled before a court trial begins, and EEOC-initiated lawsuits account for less than 5 percent of all cases that reach court.

Investigators in EEOC field offices are critical for the enforcement of Title I of the ADA. They are the engine of charge investigation. Each investigator's high case load can obviously diminish the quality of each investigation. Knowledge of the ADA and psychiatric disabilities is another critical factor. To ascertain field office investigators' resources on psychiatric disabilities and the ADA, OTA contacted each of the 50 field offices asking questions about training received on the ADA in general, psychiatric disabilities, other available resources, and the perceived need for further assistance (see chapter 5 appendix). EEOC headquarters provided general training to all field offices on Title I of the ADA in two sessions: The first session was in 2 days to provide a legal analysis of ADA principles. A second week-long session focused on how to investigate and process complaints related to the ADA. The EEOC headquarters also provided an investigation manual, the "Desk Book," and the "Technical Assistance Resource Directory"--a comprehensive list of agencies and services available, by locale.

How well did these information resources cover psychiatric disabilities? Given the general focus of these training sessions and materials, it is not surprising that the answer to this question is "sparsely." The week-long training on investigatory procedures used hypothetical cases for discussion purposes; only one of the cases dealt with an employee with a mental disability who required time off from work for periodic treatment or diagnostic services.

While investigators have received little formal information on psychiatric disabilities from headquarters, some field offices have tapped into additional resources. Twelve of the 40 respondents have sponsored seminars by local experts, and 15 have connected with a local network of experts to call for assistance on a case-by-case basis. Most field offices indicated that additional training on psychiatric disabilities would be very helpful. One of the most suggested needs was training or assistance for the initial stage of the investigation, including guidance on the types of information that are important. For example, 28 of the 40 responding field offices said information on the nature of mental illness, impact on employment functioning, and useful accommodations would be very useful. EEOC headquarters could address this resource need with additional guidance in technical assistance manuals and policy papers. Other Federal agencies, including NIDRR, CMHS, and NIMH, could also develop resource information in consultation with the EEOC. Nearly all of the field offices indicated that seminars would be useful. However, individuals associated with the Washington, DC and Chicago IL field offices indicate that intensive training sessions or seminars do not suffice. Since people with disabilities, the workplace issues that arise, and the philosophy of the ADA require case-by-case assessment, outside experts, who can be consulted as needed, are among the most useful resources. The issue thus becomes identifying local, knowledgeable experts. The Federal Government may be able to help by bringing together EEOC field offices with federally-funded service providers, including those funded by mental health block grants, vocational rehabilitation funds, and the community support program supported by the CMHS.

NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH

NIDRR is the lead Federal agency supporting disability research. Located within the Department of Education's Office of Special Education and Rehabilitative Services (OSERS), NIDRR develops and implements long-range plans for rehabilitation research, coordinates the work of all Federal agencies supporting or conducting such research, and disseminates research results to businesses, professionals, and people with disabilities.

With an annual budget of $62 million in fiscal year 1992, NIDRR's research portfolio emphasizes clinical and applied studies in conjunction with service provision. Psychiatric disabilities are not the prime focus of NIDRR's program; rather its research portfolio spans all disabilities. Of the $62 million spent in fiscal year 1992, 5.6 percent--$3.5 million--went to psychiatric disabilities (see reference 25). NIDRR, along with CMHS, funds two Rehabilitation Research and Training Centers that focus on people with severe and chronic mental disorders: Boston University's Center for Psychiatric Rehabilitation, and Thresholds National Research and Training Center located in Chicago, Illinois. Both of these centers receive additional funds from NIDRR for field-initiated research projects. The Boston University's Center receives funds to explore the long-term outcomes of a specific rehabilitation program, and the possibilities of including consumers in the conduct and definition of research regarding services. Thresholds National Research and Training Center received a field- initiated research grant supporting research on the effectiveness of educating State rehabilitation counselors about the ADA and psychiatric disabilities.

NIDRR has recently increased its commitment to psychiatric disabilities. In September 1992, NIDRR sponsored a consensus validation conference on "Strategies to Secure and Maintain Employment for Persons with Long-Term Mental Illness." A panel of experts commissioned papers summarizing research in the field and heard one day of testimony from consumers, providers, family members, and researchers. NIDRR also awarded the Matrix Research Institute a $400,000 per-year grant, for 4 years, for support of a Rehabilitation Research and Training Center on Long Term Mental Illness. The U.S. Congress has assigned NIDRR with considerable responsibilities under the ADA. Specifically, 15 grantees receive approximately $5 million in funds from NIDRR to provide information, training, and technical assistance to businesses and agencies with duties and responsibilities under the ADA. In addition to 10 regional Disability and Business Technical Assistance Centers, two National Peer Training Projects provide education about the ADA: One project targets staff, associates, and volunteers at independent living centers, and the other targets individuals with disabilities and their family members. Three materials development projects develop and test technical assistance, training materials, and programs for use by the Technical Assistance Centers and the Peer Training Projects. While these ADA-technical assistance activities include information on psychiatric disabilities, in general, they have had but little impact on consumers and employers (box 5-2). Recognizing that more technical assistance is still needed, NIDRR recently provided $120,000 for each of 3 years for a resource center on psychiatric disabilities organized and coordinated by the Washington Business Group on Health (WBGH), a nonprofit membership organization of employers. The purpose of the center is to provide information and technical assistance to employers, advocates, service providers, unions, and others to assist in achieving voluntary compliance with Title I of the ADA. Among the project's goals are: The creation of widespread awareness among employers about their responsibilities under the ADA; the establishment of a WBGH/ADA Resource Center consisting of a database of effective employer policies, "best practices" and resource individuals and materials; the provision of information and technical assistance; the production and wide dissemination of a series of ADA mental health information briefs; and the production of an employer's guide to accommodating individuals with mental disabilities in the workplace.

CENTER FOR MENTAL HEALTH SERVICES

Public Law 102-321 created a new Center for Mental Health Services within the Substance Abuse and Mental Health Services Administration (SAMHSA) of the Public Health Service, Department of Health and Human Services (DHHS). The CMHS is the Federal Government's leading administrator of funds devoted specifically to mental health services. The largest portion of its budget-- $278 million of a total of $385 million in fiscal year 1993--funds mental health block grants, the categorical Federal support of community mental health and social service programs (table 5-2, not included) (see reference 28).

Although employment is not a top priority for CMHS, several programs and activities sponsored by the CMHS touch on the issue. Perhaps most significant are those efforts undertaken by the Community Support Program (CSP). CSP was created in 1977 for people with severe psychiatric disabilities, not institutionalized, but rather living in communities (see reference 14). Under this program, States receive funds for community services, including psychiatric and general medical care, housing, social supports, and case management services. Lauded by many as an innovator and stimulus for much needed services, CSP has supported a few activities relevant to employment and the ADA. Of the 26 research demonstration projects it funds, 6 focus on vocational rehabilitation and other employment-related services, including supported education. The total amount dedicated to these projects is $7 million over 3 years; in fiscal year 1993, costs totaled $802,000.

As mentioned in the previous section, the CMHS, through CSP, cofunds with NIDRR two national rehabilitation research and training centers, at Boston University and Thresholds National Research and Training Center in Chicago, Illinois. These centers conduct research, disseminate knowledge and information, and provide technical assistance on service approaches to increase employment opportunities and successes for this population. The CMHS provides approximately $600,000 each year to support the centers.

CSP is a leader in Federal support for the psychiatric consumer movement (see chapter 2). Thirteen 3-year consumer-operated service demonstration projects, totaling approximately $4 million, recently completed their Federal funding period. Through a small contract ($18,000), the program results are being analyzed and synthesized. The report, available in 1994, will provide information on the supervision needs, problems encountered, and accommodations used by consumers employed by these projects. Also, CSP provides $700,000 per year to two national consumer self- help centers: Project Share in Philadelphia, Pennsylvania, and the National Empowerment Center in Lawrence, Massachusetts. Each center conducts some technical assistance activities related to employment and reasonable accommodations (see reference 28). For example, the National Empowerment Center conducted a national teleconference with consumers and consumer organizations in approximately 30 States to educate them on the ADA and to discuss how to ask for reasonable accommodations. Project Share conducted training for the business community on hiring people with psychiatric disabilities. Approximately 20 percent of the efforts of both centers are directed toward employment issues.

CSP has supported some ADA-related activities, although significant funding has not been devoted to this subject. CSP produced a special issue of "Community Support Services Network News" in December of 1991 that focused on the ADA's provisions (see reference 3). Also, a 1992 survey of CSP participants provided information about the kinds of accommodations that may be useful to people with psychiatric disabilities (see reference 28). Earlier this year, an in- house training session, in which outside experts were invited to talk to CSP and other CMHS staff, was devoted to the ADA. And CSP contracted with a rehabilitation/ADA expert consultant to conduct case studies on reasonable accommodations and prepare a technical assistance document (see reference 12).

The program for the Protection and Advocacy for Individuals with Mental Illness (PAIMI), administered by CMHS, was signed into law in 1986 (P.L. 99-319) and reauthorized and amended in 1988 and 1991. Annual formula grant allotments are made to existing Protection and Advocacy (P&A) Systems that were previously designated by the Governor in each State to protect and advocate for the rights of persons with developmental disabilities under the Developmental Disabilities Assistance and Bill of Rights Act (P.L. 94-103, as amended, 42 USC 6012). In fiscal year 1993, CMHS allocated nearly $21 million in funds to P&As. These PAIMI programs engage in administrative, legal, systemic, and legislative activities to protect and advocate for the rights of individuals who have a significant mental illness or emotional impairment and are inpatients or residents in public or private residential facilities or have been within the last 90 days, and specifically, to investigate incidents of abuse and neglect.

While employment issues are not a major priority, PAIMI programs have both received and provided training on issues concerning the ADA and psychiatric disabilities (see reference 15). Based on an April 1993 survey conducted by the National Association of Protection and Advocacy Systems (NAPAS) to which nearly 50 percent of the P&As responded, most reported having received some form of training about the ADA. OTA's analysis indicates that the CMHS has supported some activities related to employment, the ADA, and psychiatric disabilities. With its focus on community services and consumer participation, the CMHS could play a more useful role in research and service provision, and especially technical assistance. Indeed, among the strongest conclusions of the DHHS Inspector General report was the need for the CMHS to increase and improve its technical assistance (see reference 29). However, support for activities concerning the ADA and employment can be characterized as very modest to date, with approximately $1.5 million dollars--1.4 percent of the non-block grant budget--spent in fiscal year 1993. Various factors likely contribute to the limited support for employment and ADA- related issues. First, because the ADA is a relatively new statute, many Federal and non-Federal researchers and policy makers have yet to become actively engaged in this issue. Furthermore, employment is not a priority at the CMHS. No office, budget line, or specific legislative language addresses this topic. Funding is also an issue. In the last fiscal year, funding for programs under the CMHS declined by 6 percent, which translated into cuts for all but two of the CMHS's existing programs. This decrease in funding follows a decrease in purchasing power in the area of services (excluding the block grant program) of 1.1 percent per year between 1980 and 1992 (see reference 23). It is important to note, however, that services purchasing power increased an average of 13.4 percent per year since 1986. Finally, the development of new programs and priorities have likely been stalled by the reorganization of the CMHS in 1993.

NATIONAL INSTITUTE OF MENTAL HEALTH

NIMH is the nation's top supporter of mental disorders research (box 5-3). Recently reunited with the National Institutes of Health by Public Law 102-321, the vast majority of NIMH's funding--more than 70 percent of its budget in fiscal year 1991--goes to basic biomedical and behavioral research and clinical studies (see reference 23). Services research is also part of NIMH's mandate, with the Services Research Branch in the Division of Epidemiology and Services Research forming the focal point for support of investigator-initiated research on mental health services. To underscore the need for services research, the U.S. Congress mandated that 12 percent of the NIMH budget be dedicated to mental health services in fiscal year 1993, and 15 percent in subsequent years. Recently, NIMH published a plan for services research: Caring for People With Severe Mental Disorders: A National Plan of Research to Improve Services (see reference 27).

As part of its services research portfolio, NIMH supports studies of disabilities and employment (box 5-4). However, relative to the institute's overall budget, little money is spent on this area.

OTA requested that NIMH specifically delineate its support for research on:

1) general disability and psychiatric disability, including its characterization, assessment and measurement;
2) vocational rehabilitation, employment issues in general, and the ADA specifically; and
3) public attitudes attached to mental disorders.

NIMH provided a list of 32 grants, totaling $9.3 million in fiscal year 1992, 1.5 percent of NIMH's total research budget (see reference 26). Of these 32 awards, 7 grants, receiving $3.3 million in fiscal year 1992, focused specifically on psychiatric disability and vocational rehabilitation.

In addition, NIMH is seeking to increase its research portfolio in this area. In 1993, it awarded a contract to two new researchers in mental disorder-based disability and funded a new grant. The contract examines disability data collected in the Baltimore site of the Epidemiologic Catchment Area (ECA) study (see ch. 3). Its objective is to provide national estimates of disability due to mental disorders as well as some information to be used in developing estimates of benefits for health care reform. The grant examines the extent to which job requirements and health status affect the age specific probabilities of work disability or retirement of persons with severe mental disorders.

NIMH's National Plan also specifically identified the need for research to assist in implementing the ADA. A program announcement, Research on Disabilities and Rehabilitation Services for People with Severe Mental Disorders, has been active since 1991 and will remain so through July 1994, when NIMH plans to revise and update it. This request for grant applications encourages research on the characterization and classification of disabilities; the assessment of types and combinations of psychosocial and vocational rehabilitation; vocational incentives and disincentives; various environmental factors that affect disability and rehabilitation, including community and employer attitudes and structure and accommodation of work settings; and implementation and effects of the ADA.

Few researchers applied under the program announcement. Based on conversation with several researchers and individuals at the NIMH, OTA found that several factors probably contribute to the lack of interest. First, the program announcement was the first time NIMH announced it was funding research on disabilities due to mental disorders; in general, it takes about a decade to create a full program of research (see reference 26). Secondly, several people in the vocational rehabilitation field stress that the review committees at NIMH, with their expertise and preference for randomized research designs typical of biomedical research, do not respond favorably to the types of studies needed on the issues of the ADA and employment (e.g., longitudinal, survey designs). To stimulate research in this area, NIMH held two workshops. The first focused on the state-of-the-art in disabilities and rehabilitation services research. The second was designed to assist new investigators (or those new to NIMH research funding) to develop research proposals that would be acceptable to NIMH. In a separate one-day session, the NIMH convened experts in physical disability research to discuss the state-of-the-art in research instrumentation and methodologies for possible use in research on disabilities due to mental disorders.

PRESIDENT'S COMMITTEE ON THE EMPLOYMENT OF PEOPLE WITH DISABILITIES

The goal of the President's Committee in the U.S. Department of Labor is to develop employment opportunities for people with disabilities. Created by President Eisenhower in 1955, the President's Committee has an annual budget of $4.0 million and works with approximately 600 individuals (see reference 32). They include employers, training and rehabilitation specialists, educators, labor leaders, veterans organizations, medical and health professionals, service organizations, community leaders, as well as people with disabilities and their organizations and advocates.

The ADA has been a cause celebre of the President's Committee. Before the statute's passage, the President's Committee helped to organize nationwide hearings on disability and discrimination. Justin Dart, Jr., the former chair, headed the 63 public forums of the Task Force on the Rights and Empowerment of Americans with Disabilities. The testimony at these hearings provided key "data" on this type of discrimination and helped to propel the ADA's passage. As recounted by Mr. Dart at a congressional hearing:

Although America has recorded great progress in the area of disability during the past few decades, our society is still infected by the ancient, now almost subconscious assumption that people with disabilities are less than fully eligiblefor the opportunities, services, and support systems which are available to other people as a matter of right. The result is massive, society-wide discrimination.

Since the ADA's passage, the President's Committee has maintained its support for this statute by organizing an ADA employment summit on December 2, 1992 and conducting a series of teleconferences across 50 States to review ADA implementation.

Recently, the President's Committee has paid more attention to psychiatric disabilities by focusing on their negative images and perceptions. To help fight the pervasive stigma and discrimination, the President's Committee has organized a "Coalition Against the Discrimination of People with Psychiatric Disabilities" (CADPPD). Building on a 1992 summit of 42 national leaders and organizations concerned with media images of mental illness, CADPPD's goals have broadened, as reflected in their mission statement:

: People with psychiatric disabilities must possess the same inalienable rights and responsibilities as all other human beings. The mission of the Coalition is to eliminate discrimination against people with psychiatric disabilities. The purpose of the Coalition is to serve as a forum to share information, discuss policies and opportunities, and to encourage cooperative action to achieve common goals.

CADPPD work groups are developing language guidelines and position papers on such issues as civil rights, and it has prepared a list of workplace accommodations. The coalition includes a diverse membership, representing such groups as the National Alliance for the Mentally Ill, the National Association of Psychiatric Survivors, the National Mental Health Consumers' Association, as well as professional associations.

The Job Accommodation Network (JAN) , located on the Morgantown campus of West Virginia University, provides one of the most practical services available from the President's Committee. With an annual budget of less than $1 million ($825,378) in fiscal year 1993 and a staff of 15, JAN provides information and referrals to employers, rehabilitation and social service counselors, and people with disabilities on workplace accommodations. Receiving approximately 4,500 inquiries each month, JAN represents one of the most comprehensive source of information concerning job accommodations currently supplied by the Federal Government. Just a few years ago JAN answered very few callsconcerning psychiatric disabilities (see reference 10). Today, 5 percent of the 4,500 calls each month focus on these conditions. Prior to the ADA's passage, about 60 percent of calls about psychiatric disabilities came from people with such conditions or their families. Since the President signed the ADA, however, only 19 percent of the increasing volume of calls come from these individuals, while 41 percent come from businesses. In addition, 20 percent come from health care facilities, 11 percent from educational institutions, and 9 percent from counselors and other service providers (see reference 9). Although JAN has not amassed a great deal of in-house expertise on accommodating people with psychiatric disabilities (see reference 11), it has developed a list of mental health services that may provide useful information to employers and others.

SUMMARY AND CONCLUSIONS

The Federal Government has a prominent role to play in the ADA's implementation. Besides the law requiring Federal enforcement, technical assistance and research are needed to guide and inform implementation. This chapter surveyed Federal activities relevant to Title I of the ADA and people with psychiatric disabilities.

The ADA requires the EEOC to enforce Title I and calls for the Commission to issue guidelines and regulations, and to provide technical assistance. Despite the considerable amount of technical assistance activity supported by the Commission, little discussion of psychiatric disabilities has occurred. OTA's inquiry of EEOC field offices determined that EEOC investigators consider themselves in need of more information on psychiatric disabilities. While the EEOC has not traditionally focused on a particular class or type of disability, the lack of knowledge about mental disorders and associated disabilities, even among EEOC investigators, and the complex questions that can be raised by these conditions argue for specific attention. Given current staffing and budgetary constraints, it appears unlikely, however, that the Commission will address this area.

In addition to the EEOC, several other Federal agencies-- NIDRR, CMHS, NIMH, and the President's Committee -- have supported some technical assistance efforts concerning psychiatric disabilities, employment, and the ADA. This assistance has targeted employers and people with psychiatric disabilities. Continued efforts are necessary, as ignorance of these conditions and the law itself apparently abound. Collaboration among the mental health/disability research funding agencies and the EEOC may help assure continued and expert technical assistance in today's constrained budgetary environment.

Research is the final category of Federal activity important for ADA implementation and people with psychiatric disabilities. Federal money spent on disability research is historically small, in comparison to the overall expenditures on health research. The research dollars devoted to psychiatric disability and employment fit this same pattern. The leading Federal funders of disability and mental health research--NIDRR, NIMH, CMHS--spend approximately 1.3 percent of their annual budgets on research and technical assistance combined--less than $15 million last year. However, all three of these agencies have recently increased their commitment to psychiatric disabilities and employment research. The challenge will be sustaining and increasing attention to this topic, in order to generate the types of information necessary to effect optimal ADA implementation and employment for people with psychiatric disabilities. As the different research-funding agencies have distinct missions and cultures, a further challenge will be to develop relevant and appropriate research portfolios: relevant to the real world needs of employers and people with psychiatric disabilities and appropriate to a particular agency's mission. Collaboration and coordination of interagency research funding could help in identifying the relevant and appropriate activities in the most efficient way possible. While mechanisms for communicating across agencies have or do exist, they lie moribund at the present time.

CHAPTER 5 REFERENCES

1. Bell, C.G., Attorney, Jackson, Lewis, Schnitzler and Krupman, Washington, DC, personal communication, Jan. 13, 1993.
2. Buck Consultants, Inc., survey findings presented at "Sixth Annual National Disability Management Conference and Exhibit," Washington, DC, Oct. 26-27, 1992.
3. Center for Psychiatric Rehabilitation, Boston University, "Focus: The Americans With Disabilities Act," Community Support Network News, vol. 8 (Boston, MA: Center for Psychiatric Rehabilitation, December 1991).
4. Council of Economic Advisers, Economic Report of the President (Washington, DC: U.S. Government Printing Office, 1992).
5. Gallup Organization, Inc., "Baseline Study to Determine Business' Attitudes, Awareness and Reaction to the Americans with Disabilities Act," (Washington, DC: Electronic Industries Foundation, February 1992).
6. Harris, Louis and Associates, Attitudes of Disabled People on Politics and Other Issues (New York, NY: Louis Harris and Associates, 1993).
7. Institute of Medicine, Disability in America: Toward a National Agenda for Prevention (Washington, DC: National Academy of Sciences, 1991).
8. Jones, B.J., Gallagher, B.J., Kelley, J.M. et al., "A Survey of Fortune 500 Corporate Policies Concerning the Psychiatrically Handicapped," Journal of Rehabilitation, pp. 31-35, October/November/December 1991.
9. Judy, B.T., Director, Job Accommodation Network, West Virginia University, Morgantown, WV, personal communication, Apr. 21, 1993.
10. Mancuso, L.L., "The ADA and Employment Accommodations: What Now?" American Rehabilitation, winter:15-17, 32, 1990-1991.
11. Mancuso, L.L., Consultant, Goleta, CA, personal communication, October 1993.
12. Mancuso, L.L., Case Studies on Reasonable Accommodations for Workers With Psychiatric Disabilities (Sacramento, CA: California Department of Mental Health, 1993).
13. Mental Health Law Project, Mental Health Consumers in the Workplace: How the Americans With Disabilities Act Protects You Against Employment Discrimination (Washington, DC: 1992).
14. Mulkern, V.M., and Manderscheid, R.W., "Characteristics of Community Support Program Clients in 1980 and 1984," Hospital and Community Psychiatry 40:165- 172, 1989.
15. National Association of Protection and Advocacy Systems (NAPAS), Washington, DC, personal communication (ADA survey), April 1993.
16. National Council on Disability, ADA Watch--Year One: A Report to the President and the Congress on Progress in Implementing the Americans With Disabilities Act (Washington, DC: Apr. 5, 1993).
17. National Foundation for Brain Research, The Costs of Disorders of the Brain (Washington, DC: 1992).
18. Rice, D.P., Kelman, S., Miller, L.S. et al., The Economic Costs of Alcohol and Drug Abuse and Mental Illness: 1985 (San Francisco, CA: Institute for Health and Aging, University of California, 1990).
19. Rubenstein, L.S., "Implementation of the ADA on Behalf of People With Psychiatric Disabilities: The First Two Years," in preparation.
20. Solomon, M.L., "Is the ADA `Accessible' To People With Psychiatric Disabilities?" Journal of Rehabilitation Administration, August:109-117, 1993.
21. 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.
22. U.S. Congress, Office of Technology Assessment, Technology and Handicapped People, OTA-H-179 (Washington, DC: U.S. Government Printing Office, 1982).
23. U.S. Congress, Office of Technology Assessment, The Biology of Mental Disorders, OTA-BA-538 (Washington, DC: U.S. Government Printing Office, September 1992).
24. U.S. Congress, Office of Technology Assessment, "Americans With Disabilities Act, Mental Illness, and Employment," OTA workshop, Apr. 21, 1993.
25. U.S. Department of Education, National Institute on Disability and Rehabilitation Research, William E. McLaughlin, Acting Director, personal communication, September 1993.
26. U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of Mental Health, Rockville, MD, Frederick K. Goodwin, Director, personal communication, July 27, 1993. 27. U.S. Department of Health and Human Services, Public Health Service, National Institute of Mental Health, Caring for People with Severe Mental Disorders: A National Plan of Research to Improve Services DHHS Publication No. (ADM) 91-1762 (Washington, DC: Superintendent of Documents, U.S. Government Printing Office, 1991).
28. U.S. Department of Health and Human Services, Public Health Service, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, Rockville, MD, personal communication, 1993.
29. U.S. Department of Health and Human Services, Office of Inspector General, Revitalizing the Community Support Program, June 1993.
30. U.S. Equal Employment Opportunity Commission, A Technical Assistance Manual on the Employment Provisions (Title I) of the Americans With Disabilities Act (Washington, DC: U.S. Government Printing Office, 1992).
31. U.S. Equal Employment Opportunity Commission, Washington, DC, staff communication, Mar. 18, 1993.
32. U.S. Department of Labor, The President's Committee on Employment of People With Disabilities, Washington, DC, personal communication, September 1993.
33. Zuckerman, D., Debenham, K., and Moore, K., The ADA and People With Mental Illness: A Resource Manual For Employers (Washington, DC: American Bar Association and Alexandria, VA: National Mental Health Association, 1993).

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