Unemployment rates of mentally disabled people and the Americans with Disabilities Act: A qualitative study
TABLE OF CONTENTS
LIST OF TABLES viii
I RESEARCH OBJECTIVE 1
Introduction 1 The Problem 2 Research Questions 4 Need for the Study 5
II RELATED LITERATURE 7
Prevalence of Mental Disorders 7 History of Mental Illness 11 Americans with Disabilities Act 14 Mental Illness and Employment 17 Equal Employment Opportunity Commission 20 Conclusion 22
III METHODOLOGY 24
Qualitative Content Analysis Assumptions 24 Researcher’s Stance 28 Research Participants 32 Data Collection: Semi-Structured Interviews 34 Data Analysis 35 Coding and Coders 35 Reliability and Validity 36
vii IV RESULTS 40
Introducing the Individual Participants 41 Findings 49 Summary of Participants’ Responses 50
V CONCLUSION 64
Purpose of the Study 64 Summary of Major Findings of Individual Interview Questions 65 Summary of Major Findings 91 Strengths of the Study 97 Limitations of the Study 98 Recommendations 98 Implications for Future Research and Practice 99
A SELECTION CRITERIA 114
B LETTER OF INTRODUCTION TO THE STUDY 115
C INVITATION LETTER/CONSENT FORM 116
D INTERVIEW QUESTIONNAIRE 118
E INTERVIEW GOALS 120
F CODEBOOK 121
G INTER-RATER RELIABILITY 131
H RESPONSES, BY PARTICIPANT, FOR EACH INTERVIEW QUESTION 136
LIST OF TABLES
1 Participant Demographics 45
1 RESEARCH OBJECTIVE
People with mental disabilities have suffered a long-standing history of discrimination and mistreatment (Noe, 1997). Some fear them because they relate their condition to evil (Sullivan, 1998; Tartakovsky, 2010). Others view mental illnesses as well-deserved punishment for wrongdoing and curses (Porter, 2004). Unfortunately, such erroneous thoughts and negative attitudes have evolved into a stigma against the mentally ill − stigma being defined as a “characteristic of an individual that is deemed by others as negative" (Barker, 2003, p. 418). Kendell (2001) asserts that "the causes of this stigmatization are complex and largely derived from deeply rooted cultural attitudes to madness and assumptions about the nature of mental illness" (p. 1). Stigmas against people with mental disorders have been and continue to be widespread, leading to distress for and discrimination against this population (Stuart, 2004). The Center for Reintegration (2003) reports, "Mental illness affects millions of Americans, yet it remains among the most misunderstood of all medical maladies" (CR, p. 1). This population is taunted, degraded, and penalized because its members deviate from society’s norms (Porter, 2004). People with mental illnesses are often misjudged as being violent, but studies show that they are no more violent than people without mental illnesses (CR, 2003; Grohol, 1998; Lichtenstein, 1998). Although it has been documented that some mental
2 illnesses may cause unique behaviors that digress from standard conduct, there is no evidence to suggest that people with mental illness are more aggressive than those without mental illness (Grohol, 1998; Srikameswaran, 2000). Society’s misperceptions have caused many to be unsympathetic towards people with mental disabilities. Indeed, the unfair treatment to which people with mental illness have been subjected has often been the result of discrimination, disparity in laws, unequal insurance coverage, and lack of appropriate healthcare. (Noe, 1997). Moreover, these stigmatizations are partially responsible for people with mental illnesses being slighted by health-care funding: When there is intense competition for resources, as there frequently is, any new funds tend to go to services for the kinds of patients the public regard as most deserving, children with life threatening diseases, perhaps, or people with cancer or heart disease, but not the mentally ill. (Kendell, 2001, p. 1)
Such funding decisions document society’s fear and lack of understanding of people with mental illnesses, primarily due to an unwillingness to accept those considered to be abnormal (Noe, 1997).
Many studies indicate a connection between stigma, discrimination, and low employment rates among people with mental disabilities (CAS, 2001; Gouvier, Sytsma-Jorden, & Mayville, 2003; Kendell, 2001; Rothenberg & Barrett, 1998). In fact, a major problem facing people with mental disabilities is difficulty obtaining and sustaining gainful employment (Stuart, 2004), and many
3 attempts have been made to rectify it (SAMHSA, 2006), especially through advocacy organizations (e.g., Center for Psychiatric Rehabilitation, National Alliance for the Mentally Ill, National Association of State Mental Health Program Directors). The US government has been actively implementing nondiscriminatory policies and regulations. In 1990, The Americans with Disabilities Act (ADA) was mandated to stop discrimination towards people with physical and mental disabilities. Johnson (1997) notes the lack of coverage for mental disabilities under the ADA and its emphasis on visual disabilities. Vatz and Weinberg (1999) even question whether mental illness should fall under the ADA, noting that "the guidelines for implementing the ADA and parts of the act itself are as muddled as the underlying concept of mental illness upon which it rests" (p.. 52). Yet, according to the Census Brief (1997), A major purpose of the Americans with Disabilities Act of 1990 was to increase the employment rate of people with disabilities by making it illegal to practice discrimination against individuals who happen to have a disability. (US Census Bureau, p. 1)
Unfortunately, employers voiced several complaints regarding implementing the ADA, and lawsuits emerged against employers regarding problems with accommodation and discrimination. Consequently, seven years later, the Equal Employment Opportunity Commission (EEOC) developed guidelines for accommodating individuals with psychiatric disabilities under the ADA, but, unfortunately, those guidelines have not resolved the employment issues faced by people with mental illnesses. In fact, the guidelines for implementing the ADA
4 are known to be confusing and problematic (Vatz & Weinberg, 1999) and have not had an impact on employment accommodations for people with mental illnesses (Delieire, 2000a). Interestingly, people with physical disabilities have been found to experience the same difficulty with employment − although not nearly as severe (SAMHSA, 2003a). Even though the ADA has been in effect since 1990, progress has been slow in the area of employment (CAS, 2001). Despite the enactment of the ADA in 1990, from 1989 to 2000, the employment rates of people of working age with disabilities declined (Burkhauser & Stapleton, 2004; Houtenville & Burkhauser, 2004; Maag & Wittenburg, 2003). Twenty years after the ADA and 13 years after the EEOC guidelines had been enforced, the unemployment rates of those with mental illnesses were listed as 60% to 80% for people with mental disabilities and up to 90% for those with serious mental illnesses (NAMI, 2010). The purpose of this study is to qualitatively examine the effectiveness of the ADA in curtailing employment discrimination against people with mental disabilities. This researcher will identify the Act's regulations since its inception and evaluate the guidelines implemented to assist the mentally disabled population.
1. What do rehabilitation experts report with respect to implementation of this law?
5 2. What is the opinion of participants regarding the impact of this law with people with mental disabilities? 3. What are the different perspectives of this law with respect to rehabilitation experts?
Need for the Study
According to Rogers (1995), "Work is a critical element in the recovery of people with mental illness" (p. 5). Although the unemployment rates of individuals with mental illnesses are high, studies show they want to work (Crowther, Marshall, Bond, & Huxley, 2001). Individuals with disabilities who are able to work often have higher self-esteem and experience a greater sense of fulfillment and a better quality of life (NASMHPD, 1996; Rogers 1995). In addition, people with mental disabilities are a contributing part of our society, creative and equally or more motivated, providing the same or better work quality, job tenure, and productivity as those without disabilities (Digh, 2001; Paterni, 2010). Reuters (2002) points out a connection between creative geniuses and people with mental illnesses. In fact, many leading figures in our country had mental disabilities and many continue to be resources for the community (CR, 2003). The US government offers tax credit incentives to businesses for employing individuals with disabilities, a motivational tool to employ people who are qualified to work in select jobs. Insuring equal opportunity for employment of
6 people with mental disabilities has a two-fold effect: it purports to help people with mental illnesses make progress in several areas, and it may aid in eliminating some of the costs of mental healthcare. Therefore, it is in the best interests of the government to improve employment rates for people with mental disabilities. This study addressed whether the provisions of the Act have had an impact on employment rates of people with mental disabilities in the US. It provides significant information on the ADA that may, in the future, aid in insuring that individuals with mental illnesses are granted the same rights as individuals with other disabilities and those who are not disabled. It also identifies insufficient legal areas that should help to make the ADA more pertinent to improving the high unemployment rates of people with mental disabilities. For the purposes of this study, only the content of Title I- Employment of the Americans with Disabilities Act was examined. The clarity, appropriateness, and enforcement of the provisions related to the mentally ill population were the primary points of analysis.
CHAPTER II RELATED LITERATURE
Prevalence of Mental Disorders
Various definitions can be found for the terms mental disorder and psychiatric illness (used synonymously with the term mental illness). According to Leupo (2001), the Colonial American Society’s definition (1630-1763) used the term lunatic when referring to someone suffering from mental illness. Centuries later, the American Psychiatric Association (2000) defines a mental disorder as a clinically significant behavioral or psychological syndrome or pattern that occurs in an individual and that is associated with present distress (i.e., a painful symptom) or disabilities (i.e., impairment in one or more important areas of function) or with a significantly increased risk of suffering, death, pain, disability or an important loss of freedom. In addition, this syndrome or pattern must not be merely an expectable or culturally sanctioned response to a particular event (i.e., the death of a loved one). Whatever its original cause, it must currently be considered a manifestation of behavioral, psychological or biological dysfunction in the individual. Neither deviant behavior (e.g., political, religious or sexual) nor conflicts that are primarily between the individual and society are mental disorders, unless the deviance or conflict is a symptom of dysfunction in the individual as described above. (p. xxxi)
Barker (2003), in the fifth edition of The Social Work Dictionary, defines mental illness as an "impaired psychological or cognitive functioning due to disturbances in any one or more of the following processes: biological, chemical,
8 physiological, genetic, psychological, or social" (p. 190). Five years later, the Mayo Foundation for Medical Education and Research (MFMER) (2008) defined mental illness as those conditions that included those that affect your mood, your thinking and your behavior. To be classified as a mental illness, a condition must cause distress in your life and reduce your ability to function in one or more areas of your life, such as at work, in relationships or in social situations. (para. 1)
According to the Center for Psychiatric Rehabilitation (2010), “Mental illness refers to one portion of the broader ADA term mental impairment and is different from other covered impairments such as mental retardation, organic brain damage, and learning disabilities” (p. 1). Various factors specifically distinguish a developmental from a mental illness: the former is a condition with which a person is born or has an onset by age 18 (CDC, 2005); mental illness does not involve intelligence and can affect a person at any time or any age (Public Images Network, 2010). Major depression, schizophrenia, and obsessive compulsive disorder are all examples of a mental illness (Center for Psychiatric Rehabilitation, 2010). In 2003, approximately 450 million people worldwide experienced mental illness, making it one of the primary causes of poor health (WHO, 2003). According to the National Institute of Mental Health (NIMH, 2009), approximately 26% of Americans over age 18 (i.e., 57.7 million people) had a diagnosable mental disorder in 2004. These numbers appear to be growing: according to Grohol (2010), 32.4% (75 million) are living with mental disabilities in the US. On a global scale, NAMI (2004) projected that major depression will
9 be the primary cause of disability for women and children by 2020. In addition, the US has more people diagnosed with mental illnesses than the following 13 evolving and progressive countries: Belgium, China, Columbia, France, Germany, Italy, Japan, Lebanon, Mexico, Netherlands, Nigeria, Spain, Ukraine (AP, 2004). Unfortunately, however, those living with mental illness in the US often have difficulty obtaining treatment or being treated properly for their illness (Weiss, 2005). According to the National Alliance for the Mentally Ill (NAMI) (2005), mental illness can range from mild to severe, and the more serious illnesses can lead to a person having difficulty being independent; mental illness is exemplified mainly by behavioral changes that negatively affect the individual’s ability to function normally. Serious mental illnesses and psychiatric disabilities signify more disabling conditions and cause disturbances in functioning, such as activities of daily living (ADLs) (NAMI, 2009). When the term disability follows the word mental, the two words together signify the manifestations of the illness in the form of restrictions (Center for Psychiatric Rehabilitation, 2010). More specifically, the mental or illness/disorder is the impairment and the disability signifies the limitations as a result of the impairment (Schweitzer, 2010). Psychiatric disabilities interfere with a person’s ability to function in areas such as a jobs, school, or social environments (The Center or Psychiatric Rehabilitation, 2010).
10 Biases toward people with mental illnesses have led to stigmatization and discrimination (Arboleda-Florez, 2002). Historically, stigma has always existed (Arboleda-Florez, 2002). As Byrne (2000) points out, “mental illness stigma existed long before psychiatry” (p. 66). The word stigma originated from the Greek word stizen, which refers to a mark that was put on slaves to “identify their position in the social structure and to indicate that they were of less value” (Arboleda-Florez, 2002, p. 25). The National Stigma Clearinghouse (2010) defines stigma as “ a narrow set of beliefs that damages a broad diverse group of individuals. Byrne (2000) defines it as “a sign of disgrace or discredit, which sets a person apart from others” (p. 65). Stigmatization is demeaning and brings on separation in terms of what is perceived as the worth of an individual, but its cause is not clear (Arboleda- Florez, 2002). According to the MFME (2010), stigma against people with mental illnesses is based on stereotypes, “a negative judgment based on a personal trait – in this case, having a mental health condition” (p. 1). Although some researchers identify lack of knowledge as a major cause for stigma and suggest education as a solution, current research indicates that stigma has not decreased, despite people being better educated about the causes of mental illness (Wyckoff, 2010 & Anwar, 2007). Stigma has resulted in the mistreatment of those with mental illness in school, job, or social environments and their apprehension to seek health care (MFME, 2010). They also receive insufficient distribution of government funding due to politicians’ lack of knowledge concerning the needs of these
11 people and the financial requirements needed to improve their health care (Corrigan, Watson, Warpinski, & Gracia, 2004). Policymakers tend to allocate funds according to where they see the greater need and, unfortunately, mental illness is not typically viewed as very deserving, especially by those legislators who consider those mental illness as being responsible for their illness (Corrigan & Watson, 2003).
History of Mental Illness
From the Colonial times until the mid-1840s, treatment for the mentally ill was barbaric (Leupo, 2001; New York State Archives, 2009). Patients were subjected to such medical treatments as massive shocks to the brain and the inducement of vomiting and bleeding to expel what was considered evil or bad (Leupo, 2001). At that time, treatment was identified as "hospitalization," since it advocated institutionalization (Leupo, 2001). The next revolution, "moral management," which began in the early 20 th Century, focused on making institutions more comfortable and home-like, with the belief that such an environment would promote recovery (Carson, Butcher, & Mineka, 2000; Leupo, 2001). Interestingly, it was quite effective, even though psychotropic medications were not used (Carson et al., 2000). After 1954, when antipsychotic drugs were introduced, it began to take less time to recover from mental illness (Bloom & Schafer, 2009).
12 By the 1960s and 1970s, social reform movements, such as the Federal Community Mental Health Centers Construction Act and the Federal Social Security programs, created a new atmosphere that advocated the cessation of dehumanizing medical treatment, including closing asylums and other barbarous medical facilities (Leupo, 2001; New York State Archives, 2010). The Civil Rights Movement played a significant role in the deinstitutionalization of people with mental disabilities by initiating a vision of a more nondiscriminatory society (Shreve, 1982). This evolutionary stage, referred to by Leupo (2001) as "society cooperation and interaction" (p. 1), included developing support systems within the community and further de-institutionalization of the mentally ill. This new era of outpatient treatment and social support centers, coupled with new antipsychotic drugs, created some positive changes in the mental health field. However, these changes related more to adjustments in the medical treatment of mental illnesses rather than to efforts to decrease discrimination against the mentally ill (Leupo, 2001). The 1980s witnessed a transition from institutionalization to the beginning stages of rehabilitation; the 1990s encouraged prevention, treatment, and rehabilitation (Anthony, Cohen, & Farkas, 2000). According to Goldstein (2005), a widespread approach to treating mental illness is the recovery model, which “suggests that, rather than being ‘cured,’ one learns to live with mental illness” (p. 1). In April 2010, the State of New Jersey introduced the Wellness Promotion Act, the first of its kind in the United States (Johnson, 2000), as wellness-and-recovery model that promotes more active
13 health management and preventive care on the part of those with the illness (Houston Chronicle, 2000 & Johnson, 2000). Another model, the Wellness Inventory Illness-Wellness Continuum by Travis, first published in 1975, measures the connection between treatment and wellness (2010). The goal of the continuum is to achieve high-level wellness and maintain it through good health care and assertiveness on self-well-being. The continuum begins with premature death. This area designates a more chronic condition, with the goal of obtaining treatment and working toward becoming medically stable. As an individual progresses on the continuum, falling around the onset of the illness or the root of the problem, he/she works backwards to improve health. Once these areas, labeled disability, symptoms, and signs, have been surpassed, the continuum leads to the neutral point, which suggests a more stable health condition. The ideal direction for an individual to move on this illness- wellness continuum is to the right, which indicates a more holistic health state that signifies great improvement and stability. The areas in this direction − High Level Wellness-Awareness, Education, and Growth − signify mental, physical, and emotional well-being. Mental illnesses do not discriminate, and disability rights advocates have paved the way toward equality for those with mental disorders. Their efforts have been vital in making the public aware of the characteristics of mental illnesses and the needs of those diagnosed (Powell, 1995). They have also played a significant role in creating the majority of disability laws by working with policymakers to
14 form nondiscriminatory guidelines. Discrimination has been an ongoing problem in the US, with only recent moderate growth in understanding, accepting, and respecting people with mental illnesses. According to Bryne (2000), Mental illness stigma existed before psychiatry, although in many instances the institutions of psychiatry has not helped to reduce either stereotyping or discriminatory practices. Further, the ubiquity of stigma and the lack of language to describe its discourse have served to delay its passing: racism, fatism, ageism, religious bigotry, sexism and homophobia are all recognized descriptions for prejudiced beliefs, but there is no word for prejudice against mental illness. (p. 66)
Therefore, the principal objective of disability rights advocates has been to ensure mainstreaming on a universal and individual level and to counter all forms of discrimination.
Americans with Disabilities Act
The Americans with Disabilities Act (ADA) was designed to eliminate discrimination against and ensure equality for people with physical and mental disabilities. The Act sets standards and implements guidelines regarding employment, public services and transportation, public relations, and telecommunications. The roots of the ADA lie in the Civil Rights Movement of the 1960s, including but not limited to the Civil Rights Act of 1964 and the Rehabilitation Act of 1973 (US EEOC, Commission, 2009). In 1988, the National Council on Disability (1997) recommended that a nondiscriminatory disability rights law be developed, laying the groundwork for the foundation of the ADA; the second draft was in 1989, and by July, 1990, a
15 final version of the bill, including amendments, was passed by both houses of Congress (Senate and House of Representatives) and became law (NIDRR, 2010). On July 26, 1992, the ADA regulations went into effect for businesses with 25 or more employees, and on July 26, 1994, for businesses with 15 or more employees (US Dept. of Justice ADA, 2010). Title I of the ADA prohibits employment discrimination on the basis of a disability (Equal Employment Opportunity Commission, 1992). However, it appears that the ADA has not had a significant impact on discrimination against people with mental disabilities thus far; in fact, employers have lodged numerous complaints and employees have brought forth numerous litigation cases regarding discrimination. Ensuring coverage under the ADA is not clear-cut. For example, just the diagnosis of mental disorder does not guarantee coverage under the ADA (Seligman & Schiff, 1996); in fact, under the law, one must be significantly impaired to be covered. Moreover, the same traits that deem a person’s disabled and that protect that person’s employment rights under the ADA often are misperceived (Seligman & Schiff, 1996). This has been a significant problem because employers who do not understand mental illness can mistake such behaviors for bad work habits and attitudes and fire the employee. According to Lissy (1994), "Dealing with mental illnesses under the ADA is a large problem for management, [and] there is lack of guidance from the EEOC in this area" (p. 2). Gleick, Blackman, Dowell, & Hornblower (1997)
16 specifically address the problem small businesses face and suggest solutions for accommodating the mentally ill in the workplace, such as assuring work schedule variations to accommodate an individual who has an appointment. Forster (2000) further addresses employers’ difficulties in understanding their responsibilities under the law in the area of accommodations. He indicates the complications involved in accommodating people with mental illnesses and points out the difficulties employers are having because mental illness is individualized. One major complaint employers voice regards how specific the ADA is regarding covering people with physical disabilities but how evasive it is regarding covering people with mental illnesses (Vatz & Weinberg, 1999). For example, if an individual has to use a wheelchair to get to employment but there is no ramp to get into the facility, the guidelines provide the employer with specific changes, if any, that need to be made to reasonably accommodate the individual. However, there is a lack of the same degree of specificity regarding how to accommodate environmental disturbances that could interfere with a mentally disabled person's ability to concentrate in an employment setting. Unfortunately, because of the diverse nature of mental illnesses, including extreme differences in severity levels, no quick fixes are found in employment accommodations (Croghan, Kniesner, & Powers, 1999). Researchers question whether the ADA properly covers people with mental illnesses, and, not surprisingly, employers have difficulty applying it to people with mental disabilities (Croghan et al., 1999; Vatz & Weinberg, 1999),
17 given the decrease in employment rates of those with mental illness since the law was enacted (Scwochau & Blanck, 2003; Deleire, T., 2000a).
Mental Illness and Employment
Employment rates of people with mental disabilities are far lower than those without any type of disability but significantly higher than those with other disabilities (Rehabilitation Research and Training Center on Disability Demographics and Statistics (RRTCDDS, 2005). Estimates of unemployment rates for those with mental disabilities range from 60% to 90%, with the more severe the mental disability, the closer to the higher percentage rate (Ahrens, Frey, & Burke, 1999; Garske, 2009; Mechanic, Bilder, & McAlpine, 2002; NAMI, 2010; RRTCDDS, 2005). People with mental disabilities face major problems because of the nature of the illness (Stuart, 2004). Serious and persistent mental illnesses interfere with individuals’ abilities to function socially and often have a negative impact in the employment setting (NAMI, 2009). Moreover, these individuals have difficulty focusing and keeping up with the pace of regular daily activities and often suffer from low energy and fatigue (NAMI, 2009). Not surprisingly, meeting production quotas and interacting with others is a typical major problem (Mancuso, 1990). As a result, many mentally disabled individuals are unemployed, homeless, and live in impoverished conditions (Jans et al., 2004).
18 Zuckerman, Debenham, and Moore (1993) have identified the work habits and behaviors of individuals with mental illnesses that make it difficult for them to sustain employment: • Consistent late arrivals or frequent absences • Low morale • Lack of cooperation or a general inability to work with colleagues • Decreased productivity • Increased accidents or safety problems • Frequent complaints of fatigue or unexplained pains • Problems concentrating, making decisions, or remembering things • Making excuses for missed deadlines or poor work • Decreased interest or involvement in work (p. 59). Zuckerman et al. further explains that these work habits are caused by “the irregular nature of mental illness; stress associated with non-disclosure; side affects of medications; interrupted education or training; comorbidity” (p.13). Yet, although people with mental illnesses likely experience some of these difficulties, each person’s experience is an individual one, depending upon his/her diagnosis and should be addressed accordingly (Pioneer Counseling Center, 2010). If mandated by the Federal government, employers can accommodate the needs of people with mental illnesses and can provide what this population needs to be more productive in the work setting. Some of these accommodations could be as simple as being flexible with time, thereby allowing individuals to go to
19 their medical/psychological appointments or giving them quieter environments in which they could concentrate better on their work (Cornell University, 2000). People with mental illnesses are typically unfairly treated by employers (SAMHSA, 2010). They may be terminated from their jobs, be ridiculed by their coworkers, or not be awarded deserved promotions (MFMER, 2005). Brandt (2004) recounts many employee stories regarding their employers’ attitudes toward those with mental disabilities and lists many examples of internal demeaning workforce behaviors. These problems may stem from management’s lack of a clear understanding of the ADA employment guidelines (Schwartz & Post, 2000). As Scheid (1998) reports, Although not a significant predictor of compliance [with the ADA], employers were uncomfortable with potential employees who had a history of mental illnesses, and perceived mental illnesses to be associated with functional limitations and potential dangerousness. (p. 11)