Rehab Rounds: Use of the Americans With Disabilities Act by Young Adults With Schizophrenia

Title I of the Americans With Disabilities Act (ADA) specifically prohibits employment discrimination against "qualified individuals with a physical or mental disability that substantially limits a major life activity" (8). Although little is known about how people with mental illness understand and use their ADA rights in the workplace, 86 percent of focus group participants with serious mental illness were unfamiliar with their rights to reasonable accommodations under the ADA (9). The consumer participants lacked knowledge regardless of whether they received help in their job search from an employment specialist.

Using semistructured, qualitative interviewing, we assessed the responses of 20 young adults with recent-onset schizophrenia to key questions about the ADA and other work-related experiences to better understand the role of the ADA in their lives (10). The individuals queried were participants in a schizophrenia aftercare clinic that provided biweekly case management, skills training in disease management, and medication management and brokered referrals to the California Department of Vocational Rehabilitation (DVR) for vocational assessments. No organized education about workplace rights under the ADA was provided.

The ten men and ten women who participated in the study were selected because they had a work history before they developed schizophrenia, and all made the transition to competitive employment after they became ill. These criteria were used to enable us to focus on successful reentry into the workforce and to better understand why individuals with a work history were more successful in reestablishing employment. All participants were receiving Supplemental Security Income, were judged to be compliant with their medications at the time of the interview, and were receiving services from a multidisciplinary treatment team. The study was conducted between April 1999 and March 2000.

From the interviews, it was possible to categorize the study participants into three distinct groups based on knowledge and use of the ADA. Group 1 (nine participants) had no knowledge or use of the ADA, group 2 (seven participants) had knowledge of the ADA workplace accommodations but did not use them, and group 3 (four participants) had knowledge of and used ADA accommodations. We highlight themes from the narratives of the 20 individuals—especially those from the third group, who had knowledge of ADA legal protections, enlisted support to find and keep a competitive job, and used ADA accommodations.

A little ADA knowledge is better than none

Although there is much to learn about how the ADA protects persons with psychiatric disabilities in the workplace, having even a small amount of correct information benefited all members of group 3. The four men in group 3 learned about the ADA from family members or mental health professionals in an informal manner. Although their knowledge about the ADA was skeletal, it was enough to convince each person of the probable utility of the ADA in the workplace. All four men were pleased to learn of the existence of legal protections against employment discrimination, which prompted them to request and use employment support from multiple sources, including vocational rehabilitation providers (three men), mental health professionals (all four men), and family advocates (two men). Although the knowledge these study participants received was not provided formally, it was factually correct and contributed to their motivation to use workplace accommodations in current or future jobs.

Individual awareness and work adaptation

The four men in group 3 expressed awareness that the disability they experienced as a result of their mental illness was profound, and this awareness led them to ask for vocational support. They all desired competitive work as an indicator that they were recovering. Because of their higher level of employment functioning before they became ill, they were aware that they did not have the same productivity and persistence as they had previously and would probably need help. As otherwise healthy young men, they believed that earning at least some income was associated with a more positive self-image, greater well-being, and better quality of life. Thus they were willing to work, despite persistent symptoms, if they could galvanize support, encouragement, and reinforcement.

Mr. E, a 24-year-old white man, was the only one of the four participants in group 3 to resume his job bagging groceries after his diagnosis of schizophrenia. He was also the only one to earn more than the minimum wage. His symptoms were initially job related. He believed he was receiving messages from the products he was bagging and that he had to perform actions by rhyming key words from the messages. He stated that as things got worse, "every decision was based on a sign."

When these incidents began, Mr. E did not know what was happening to him. However, after his hospitalization he became aware of how severe his problems had become and how difficult it might be for him to return to work. He took a break from work and school to recuperate. However, his paranoid thoughts continued to be a daily presence. After two months Mr. E received a call from the store manager asking him to come back to work because the store was short staffed. Mr. E had given his father permission to intervene by disclosing the nature of his illness to the store manager in order to preserve his job.

Mr. E's father knew about the ADA's protections and told his son about them. Mr. E did return to work with a reduced hourly schedule, and along with his father he worked out an accommodation plan with the store manager. "I would sometimes take breaks when I didn't feel well. I would sit in the lounge, get something to eat, and then go back to bagging groceries." When asked to articulate why he has been able to work despite his persisting symptoms, Mr. E replied, "I don't do a variety of jobs in the store. All I do is bag groceries."

Mr. E's point about not engaging in challenging and varied job tasks was echoed by all the young adults in the study. The accommodations they obtained enabled them to maintain the status quo, develop personal work strategies that were shared with their boss, and gain maximum proficiency in their current job rather than climbing the employment ladder.

Requesting help with employment and accommodation

People with severe mental illness tend to have better job success when they are matched with their preferred jobs (11). However, the steps that lead from identifying a job preference to obtaining a job are complex and difficult to negotiate for persons with mental illness. Some individuals get stuck at the level of identifying a job preference and never seek work because they believe that the symptoms of their mental illness prohibit them from acquiring their preferred job. It is also true that a higher level of individual communication, assertiveness, and problem-solving skills are necessary for making requests to an employer about preferred job tasks and accommodations.

Mr. S, a 33-year-old white man with a five-year history of schizophrenia, was highly motivated to seek work but realized that he had limitations in his thought processes, which made him fearful of initiating a job search. He started with the DVR and was educated about the protections afforded by the ADA. After months of traditional DVR activity, Mr. S was ready to find a job. He was able to turn his job preference into reality by asking for assistance with job procurement, making it clear that he would do "whatever it took" to work at a paid job but that he would need help and support from his counselor. He expressed a desire to resume hotel work, so the DVR enrolled him in trade school and arranged for his placement as a trainee at a hotel.

Mr. S's job duties consisted of sweeping, washing doors, setting up banquet tables, and putting out pens, paper, and candy. He was comfortable with the overall level and pace of his workload and appreciated the fact that his supervisor allowed him to adjust his weekly hours depending on his mental state. He said that this flexibility enabled him to work effectively and retain his job.

Disclosure and job tenure

Individuals must decide whether to disclose their disability to their employer on the basis of their understanding of what aspects of their illness are disabling, their knowledge of legal protections, and the unique features of their situation. Of course, the disclosure of mental illness is a personal choice that is mandatory only if the individual believes he or she is in need of the workplace accommodations afforded by the ADA. For most people, the decision to disclose a disability is complex and is specific to their unique situation.

All four of the men in group 3 made the decision to disclose their disability to their employer. All reported that disclosure enabled them to better perform the essential functions of their job and helped make their work environment less stressful. They each felt that by being honest with their employer they were more likely to have someone in the workplace to turn to if problems were to arise. They also reported that this sense of safety and support helped them avoid quitting their jobs when their symptoms were exacerbated.

Mr. L, a 28-year-old Mexican-American man who is married and has two small children, had many jobs before he became ill. He experienced a very pronounced life change as a result of his schizophrenia, and it severely affected all his relationships. Unable to live independently, he eventually moved into a comprehensive residential program in Los Angeles. Mr. L participated in various in-house vocational tasks, such as maintenance work, before obtaining competitive employment. He had an employment specialist who "encouraged us and helped us out when we wanted to do something. We had her ear." Mr. L learned about disclosure and believed that the only way he would work again would be by being honest with his employer about his symptoms.

The employment specialist met with Mr. L and the manager of a local Mexican restaurant that had previously employed mental health consumers. The manager was sympathetic to the needs of persons with mental illness and was familiar with the value of ADA accommodations. A plan was jointly developed that would enable Mr. L to begin work and to sample some of the jobs in the kitchen. He tried preparing vegetables but rejected this task because he felt uncomfortable working with knives. Instead, Mr. L developed a routine of tending to various cleaning tasks in the kitchen. He enjoyed these tasks, and his manager supported and encouraged his efforts. As a result of his disclosure and subsequent job planning, Mr. L has kept his part-time job at the restaurant for more than a year.

Conclusions

Four themes can be identified from the experiences of the people in group 3 who we interviewed about their return to work. First, these four individuals recognized that their work history had value and allowed them to believe that competitive employment was possible for them. Second, each person realized that previous work experience could be used to identify a preference for future work. Third, they understood that they may need to modify both their approach to job procurement and the amount and type of help obtained from mental health professionals. Finally, they found that disclosure to their employer could be beneficial, although they recognized that the decision to disclose their illness was a personal choice. However, knowledge and use of the ADA was not a determinant of the study participants' return to work—all 20 participants attained that goal regardless of their awareness of the ADA.

Afterword by the column editors: Assuming that awareness of the ADA can be helpful to people with mental disabilities who are seeking competitive employment, how should mental health practitioners go about the key task of educating clients about the ADA and work incentives? Of course, clinicians should first become familiar with the ADA and how it applies to people with serious mental disorders. The consumer handbook developed by the Bazelon Center for Mental Health Law (12) is an excellent introduction to this topic. Informed clinicians should help clients focus on the healthy aspects of their work functioning before the onset of their illness, thus establishing a mutual belief in the value and possibility of rejoining the workforce. Interested clients should be assisted in their efforts to identify desirable work opportunities while honestly appraising the potential barriers to successfully obtaining and maintaining the sought-after job. It is in overcoming these barriers that the ADA can have its most significant impact. Mental health practitioners can provide guidance to clients as they attempt to balance their desire for privacy with the potential work-related advantages of disclosure.

An important caveat, however, is that clinicians should not oversell the benefits of the ADA to their clients. Recent Supreme Court decisions have markedly constricted the scope of the ADA for employees with disabilities (13). Moreover, case law has established that there are very limited ways in which the ADA can operate to provide accommodations for persons with mental illness. Examples include several recent judicial rulings in which the request for privacy, reduced social stimulation, and greater levels of feedback and structure in a job were not considered to be reasonable accommodations. Clearly, the evolving nature of this area of law suggests that up-to-date knowledge of the utility of the ADA is a critical component of a supportive, tailored, and effective vocational plan.

Acknowledgment

This study was supported by grant RO3-MH-60481-01 from the National Institute of Mental Health to Dr. Gioia.

Dr. Gioia is affiliated with the University of Michigan School of Social Work, 1080 South University, Ann Arbor, Michigan 48109 (e-mail, [email protected]). Dr. Brekke is with the School of Social Work at the University of Southern California in Los Angeles. Robert Paul Liberman, M.D., and Alex Kopelowicz, M.D., are editors of this column.