Identifying the job accommodation needs of American workers with mid-career neurological disabilities: A multiple case study investigation

1.1 Work disability as a stressor

The combined physiological, sensory, and psychological impact of a significant disability frequently compromises one’s prospects for continued employment. This results in considerable psychological stress, which can serve to undermine one’s medical treatment, exacerbate disabling symptoms, and affect performance in a wide range of social roles (Marini & Stebnicki, 2012). Collectively, these experiences with mid-career disability interfere with the person’s belief in the ability to exert personal control in daily affairs and achieve daily living, educational, recreational, financial, and vocational goals (Mohr et al., 2002, 2004). Mid-career disability is also apparent to others in one’s family, social network, and employment settings. Research indicates that others view mid-career illnesses and injuries as stigmatizing conditions associated with stereotypical perceptions of the person as contagious, a safety risk, unproductive, dependent, and unstable (Smart, 2016). These stereotypes may cause family members to emphasize what the person cannot do, friends to avoid social contact with the person, and employers to initiate actions that cause the person to resign or retire (Kosciulek, 2007; Vickers, 2012).

This cursive review of the impact of mid-career disability illuminates why attempting to retain employment while coping with injuries and illnesses is such a stressful proposition. It is a real and present threat to assets or resources that enable the individual to maintain a fulfilling life. This threat of loss or actual loss of resources causes individuals to conclude that mid-career disability will have multiple negative and uncontrollable (i.e., stressful) effects on their lives, a conclusion that only serves to further exacerbate the impact of disability on the individual and on her or his ability to work (Mohr et al., 2004).

1.2 A resource perspective on mid-career disability

Based on the preceding information, one can reasonably assert that mid-career injuries and illnesses are experienced as stressful given the losses that their presence causes and/or portends to cause. Viewing stress as resulting from loss of life resources (e.g., personal, social, material) provides a concrete and objective perspective both on when and why events are interpreted as stressful and on the amount of stress they create (Chen et al., 2015; Hobfoll, 2012). These resources are viewed as critical to the ability of individuals to “conduct the regulation of the self, their operation of social relations, and how they organize, behave, and fit into the greater context of organizations and culture itself” (Hobfoll, 2012, p. 228). Resources are essential because they enable individuals to pursue and achieve their primary motive of maintaining central and universal values such as “health, well-being, peace, family, self-preservation, and positive sense of self” (Hobfoll, 2012, p. 228). Any disruption in the person’s ability to create and preserve resources needed to achieve these motives is, therefore, highly detrimental to overall well-being and quality of life.

The motive to create and preserve resources is central to the Conservation of Resources theory (CRT) developed by Hobfoll (1989, 2002, 2011) and examined in multiple investigations (Alvaro et al., 2010; Brummelhuis & Bakker, 2012; Haggar, 2015; Taylor et al., 2006). Individuals are motivated to enhance their resources and to counter any events that might cause their diminution. Corollaries to CRT principles postulate that resources accumulate in aggregate, which Hobfoll (2012, p. 229) referred to as resource caravans that are “encouraged, discouraged, or outright prevented by environmental conditions called resource caravan passageways.”

Applied with respect to mid-career disability and the present study, the CRT principles and corollaries maintain that workers appraise the illness or injury condition as a severe and chronic stressor because its effects can lead to losses in four categories: personal, condition, object, and energy resources. Personal resources refer to characteristics of the person such as age, gender, racial/ethnic status, and educational level; psychological characteristics such as self-esteem, self-efficacy, sense of coherence, and resilience; and health characteristics such as the presence, severity, duration, and type of illness or injury symptoms. Condition resources pertain to the life statuses and roles available to the person in terms of social relationships that promote independence and quality of life (e.g., married/never married, divorced, separated), employment (e.g., fulfilling work or unfulfilling work), and social support (e.g., supportive or unsupportive). Object resources refer to those tangible attributes of the person’s environment such as housing (e.g., adequate and accessible or not) and transportation (e.g., sufficient, suitable, and reliable or not). On the other hand, energy resources are tangible and intangible entities such as money, time, and effort that can be exchanged to acquire and build resources in the other three categories.

Because resources exist in aggregate and can generate each other (e.g., employment provides income, condition and energy resources; good health increases social support, personal and condition resources; income makes adequate housing and transportation more achievable energy and object resources), any threat to one is a threat to all, with the cumulative outcome being the increased stress level and reduced quality of life experienced by people whose careers are thwarted by injury and illness (Brummelhuis & Bakker, 2012; Strauser, 2014).

1.3 The work experience survey: building personal, condition, object, and energy resources to facilitate job retention

The Work Experience Survey (WES; Roessler & Rumrill, 2019) is a structured interview designed to assist employed people with disabilities in identifying resources that remove or reduce barriers to worksite accessibility, performance of essential job functions, job mastery, and job satisfaction. Developed in research with adults with MS, arthritis, and TBI (Allaire et al., 2003; Roessler et al., 2017), the WES concludes with the development of a job accommodation plan drawing on knowledge of the employee, employer, rehabilitation professional, and Job Accommodation Network (JAN; Rich et al., 2009). The employee, employer, and rehabilitation professional evaluate accommodation strategies to determine the extent to which they increase the worker’s job retention resources and are viewed by the employer as practical and cost effective. When these conditions are met, individuals with mid-career disabilities experience an increased probability of retaining satisfying employment. Empirical findings regarding the significant relationship between the number and quality of accommodation resources and job satisfaction support the importance of this rehabilitation intervention (Rumrill et al., 2004).

1.4 Rationale and purpose of the present study

Taken in aggregate, two well researched components of the literature, namely, the effects of mid-career neurological disability on continued employment and the effects of joblessness and receipt of disability benefits on person, condition, object, and energy resources, form the rationale for this case study investigation of the workplace accommodation needs of people with mid-career neurological injuries and illnesses. Specifically, we demonstrate the use of the WES, a psychometrically sound assessment instrument, and a resource-driven planning procedure designed to help workers with disabilities resume or retain their employment rather than enrolling in disability benefits.

2.1 Participants

Ranging in age from 35 to 48 years, the sample included two African American females, one Caucasian female, and one Caucasian male. The participants’ primary disabling conditions were stroke (two participants), post-concussion syndrome, and MS. One participant held a bachelor’s degree, one held a two-year nursing degree, one had some vocational training after high school graduation, and one held a high school diploma. Three participants were employed full-time at the time of the investigation, and one participant was employed part-time (15 hours per week). Full-time weekly gross salaries ranged from $660 to $752 (one participant chose not to disclose her or his salary), and the part-time worker reported earning approximately $360 per week. Participants had been living with their neurological disabilities for relatively short periods of time, ranging from a few months to three years.

2.2 Instrumentation

During one telephone interview, each participant completed the six sections of the WES: background and work experience information, barriers to worksite accessibility, barriers to performance of essential job functions, job mastery concerns, job satisfaction ratings, and job accommodation plan (top priority barriers and feasible solutions). In the barriers to worksite accessibility section, participants indicated whether they encountered any obstacles created by public walks, parking lots, steps, elevators, and other aspects of the physical environment. The section on barriers to essential job functions included tasks in six areas: physical abilities, cognitive abilities, task-related abilities, social abilities, working conditions, and company policies. The job mastery concerns section is an abbreviated version of the Career Mastery Inventory (adapted with permission; Crites, 1990) consisting of 24 items addressing six areas of career mastery: getting the job done, fitting into the workplace, learning the ropes, getting along with others, getting ahead, and planning the next career step. Previous research supports the internal consistency of the job mastery scale (Cronbach’s Alpha = 0.78; Rumrill et al., 2004). The job satisfaction rating section presents 20 work reinforcers from the Minnesota Theory of Work Adjustment (Swanson & Schneider, 2013). With respect to their current employment experiences, participants used a three-point scale to indicate whether their access to a specific reinforcer was: (a) too little, (b) about right, or (c) too much. In previous research (Rumrill et al., 2004), the internal consistency reliability (i.e., Cronbach’s Alpha) of the job satisfaction scale was 0.91.

2.3 Procedures

The WES telephone interviews (one per participant) required 60–120 minutes to complete and were all conducted by the same interviewer. Following the interview, based on the accommodation strategies identified by each participant during the WES interviews and information from the Job Accommodation Network (JAN) website, the interviewer provided each participant with an accommodation plan. The participant and interviewer decided on a final accommodation plan, and the interviewer suggested strategies for participants to use in requesting needed accommodations from their employers (Roessler & Rumrill, 2015). Where feasible, these accommodations were implemented in the job setting and monitored to determine the extent to which they improved the individuals’ job performance and satisfaction.

3.1 Case #1

The first case is that of a 44-year-old African American woman who sustained a stroke approximately one year prior to her WES interview. Holding a high school diploma and having completed some additional job training upon graduation, this participant works full-time as a travel agent. She earns approximately $18 per hour. This participant’s job entails filing, using the telephone, typing, faxing, and interacting with customers to provide travel advice and guidance. When asked what symptoms associated with her stroke pose functional limitations at work, she noted issues with balance, fatigue, strength, difficulty breathing, walking, memory, aphasia, forgetfulness, and concentration.

3.2 Case #2

The second case study involves a 48-year-old Caucasian female who had a stroke several months before the WES interview. She was told by treating physicians that high blood pressure contributed to the stroke. Employed as a licensed practical nurse, this participant works full-time and has held her position for 25 years. Her current job primarily involves fielding medical calls, assisting with routine medical procedures, and taking vital signs of patients. When asked how her recently acquired stroke impinges (or has impinged) on her job performance, she identified experiencing short-term memory loss, lack of muscle strength, and difficulties with balance.

3.3 Case #3

The third participant is a 35-year-old Caucasian male who acquired post-concussion syndrome at the age of 33 by slipping in the shower and hitting his head on the wall. This participant also explained that he frequently has severe feelings of anxiety and occasionally experiences panic attacks, though he does not have a generalized anxiety disorder (GAD) or panic disorder diagnosis. Throughout the interview, it seemed that this participant’s levels of anxiety, perhaps even more so than his concussion-related symptoms, significantly impacted his ability to work. He holds a high school diploma and describes himself as being self-employed doing property maintenance work. Prior to his concussion, he worked approximately 40–45 hours a week and averaged an income of $19,200 per year. He currently works around 15 hours a week. Specifically, his position involves physical labor and his most common projects are grass-cutting, trimming hedges, washing cars, and general landscaping. He identified problems with anxiety, balance, “brain fog,” and being constantly fatigued (both physically and mentally) as his most prominent work-related limitations.

3.4 Case #4

The final participant in this study is 44 years old and has been living with MS for three years. She has a bachelor’s degree in psychology, and, similar to participant 2, she is employed as a licensed practical nurse (LPN). She has held this position for 4 years and works 32 hours per week. She earns $750 per week before taxes. In terms of required tasks, this participant’s job entails handling admissions and other administrative duties; obtaining vital signs from patients; and administering immunizations. When asked what symptoms of her MS present functional limitations at work, she noted issues with her cognition, her mood “[going] up and down,” fatigue, and dizziness.

4.1 Specific accessibility concerns

Issues pertaining to parking, balance, and light and temperature sensitivity emerged as common themes in the description of accessibility barriers in the WES interviews. Three of the four participants described balance issues as being significant barriers for them. They particularly had issues with strength, fatigue, and ambulation. Two of the participants commented that lighting in the workplace was too bright and frequently led to headaches that negatively affected their job performance. Two participants also had problems with the temperature at their work sites; participant 1 mentioned that she frequently found herself either too hot or too cold, whereas participant 3 said that he was often too hot when working outside. Two participants had barriers related to parking, in one case because the parking lot was too large and in another because of the anxiety the participant experienced.

4.2 Specific essential function concerns

The impact of participants’ cognitive and physical limitations was perhaps most strikingly evident (with the exception of participant 2) in the number of essential function difficulties they experienced in their work (i.e., participant 1 n = 22, participant 2 n = 6, participant 3 n = 23, and participant 4 n = 33). Obviously, employed participants experiencing 6 to 33 concerns are in a vulnerable position vis-a-vis job retention and, thus, must receive early and intensive assistance to build resources and remove those barriers. One of the strengths of the WES assessment is that these essential function difficulties are specifically described, which serves to guide discussions among rehabilitation professionals, employers, and employees as well as searches of job accommodation suggestions using resources such as JAN (Rich et al., 2009; Rubin et al., 2016).

4.3 Specific job mastery concerns

Job mastery concerns identified in WES interviews are often useful in providing further and unique insights into potential problems in job retention. However, three of the four participants in this case study investigation reported that they had no job mastery barriers. It is important to recall that the items in this scale are centered on career advancement, promotion, etc. Reasons why the majority of participants did not report any barriers here may include the facts that participants had worked in their positions for many years and had no aspirations of advancing. However, for the one participant who did indicate a total of nine barriers in this section, these difficulties may have a direct bearing on her long-term career development. For example, she identified not having the tools, knowledge, or skills necessary to do or advance in her job; she also expressed uncertainty regarding whom to approach when asking for promotions. This latter issue highlights that, when it comes to advancing in one’s career, it is important that the worker has the capacity to navigate the organization and “climb the ladder,” which also includes having the specific skills and work environmental factors that are necessary to success. Certainly, identifying what the specific limitations are is an important first step toward obtaining a solution. Therefore, for this participant and other workers with similar concerns, job mastery barriers should be addressed in rehabilitation follow-along interventions in the workplace (Rumrill, 2016). Here again, we remind readers of the importance of early-intervention return to work or stay at work services to ameliorate potentially career-threatening job mastery concerns before they become unresolvable.

4.4 Specific job satisfaction concerns

Participants reported mixed but overall moderate to high levels of job satisfaction. This is somewhat surprising given the relatively high numbers of accessibility and essential function barriers some participants identified. Among the 20 work reinforcers included in the WES, two participants reported no areas of dissatisfaction, whereas one reported six areas and one reported 10 areas. Two participants both expressed dissatisfaction with the following items: doing something different every day (too little), pay comparing well to that of others in similar positions (too little), and the job having good working conditions (too little).

For the two participants who identified specific areas of dissatisfaction with their work, the implications of these findings are born in a major proposition of the Minnesota Theory of Work Adjustment, namely, that job satisfaction is a predictor of job tenure. Workers with disabilities (and workers without disabilities, for that matter) who report low levels of satisfaction with their jobs are at high risk for job loss (Strauser, 2021). Therefore, remediating barriers to job satisfaction in an early-intervention context is an important step toward increasing the probability of job retention among adults with disabilities in general and, based on the results of this study, among workers with mid-career neurological disabilities in particular. The early-intervention emphasis allows rehabilitation professionals to pro-actively engage with workers, employers, and often healthcare providers (with external team members like employers and healthcare providers being included only with the worker’s consent) to address potential areas of dissatisfaction and thereby increase the reinforcement that workers derive from their jobs –all with the ultimate goal of long-term career success.

4.5 Best practices in client assessment, vocational evaluation, and accommodation consultation

We believe that the assessment protocol demonstrated in this study, the WES, is highly consistent with current best practices in rehabilitation counseling client assessment. Wehman (2017) accurately noted that rehabilitation professionals should place strong emphasis on gathering ecological information (i.e., person-in-situation data) to increase the effectiveness of rehabilitation interventions and the probability of job retention for individuals coping with neurological disorders. To that end, sections of the WES are compatible with recommended requirements for vocational evaluation following the onset of disability. Rumrill (2016) recommended that vocational evaluations should address aspects of the person’s work history, physical work environment, workplace culture, and available supports and opportunities. He also called for greater involvement of employers in the process of helping individuals with mid-career injuries and illnesses adapt to the work setting in terms of suggesting both behavioral changes on the worker’s part and changes in the work environment, including universal design principles that make environments accessible to all users regardless of disability status (Sheppard-Jones et al., 2021). Indeed, universal design principles alleviate the need for individualized, often stigmatizing workplace accommodations to address one worker’s needs, and they do not require beneficiaries of those principles to disclose their disabilities to employers as is required in the provision of individualized accommodations (Roessler & Rumrill, 2015).

The suggestions provided by JAN in response to each participant’s accommodation profile provide a basis for workers with neurological disabilities to discuss their needs for on-the-job accommodations with their employers, and for rehabilitation professionals to help facilitate that dialogue (Rumrill, 2016). Rehabilitation counselors are increasingly being called upon to provide worksite-based interventions that facilitate the accommodation request and implementation process (Strauser, 2021). Often, facilitating accommodation dialogue is achieved as part of an over-arching effort to help employers establish inclusive workplace policies and practices as per Title I of the ADA. In discussing the role of the rehabilitation professional as a consultant and technical advisor to employers in the ADA era, Mullins et al. (1995) and Brodwin (2016) stressed the importance of helping employers:

Establish an ADA compliance office.

Employers may need to be educated about the low cost and ease of most accommodations (e.g., flex-time, flex place, telecommuting, schedule modifications, natural supports; Rubin et al., 2016) for workers with neurological disabilities. The ADA presents the accommodation process as a continuous, rather than one-time, matching of person and job. Therefore, rehabilitation professionals must continually update their knowledge not only of the medical and psychosocial aspects of neurological disabilities but also of the range of job accommodations that can help workers conserve their job retention resources (Chen et al., 2015), as is evident in the case studies reported in this article. In parallel to increased understanding about accommodations for individual workers, readers are reminded that rehabilitation professionals must also help employers gain appreciation for the implementation of universal design principles, as a way to increase overall productivity, accessibility, and morale in the workplace (Sheppard-Jones et al., 2021).

Looking ahead to the return to work and stay at work outlook for employees with neurological disabilities in the post-COVID-19 era, one potentially positive outcome of the pandemic may be that, because so many workers are now telecommuting, the option of working from home will be more readily available, not only as a reasonable accommodation, but as an alternative for larger numbers of employees than ever before. Expanding this option to workers with and without disabilities is emblematic of the universal design strategies advocated by Sheppard-Jones et al. as the most cost-effective and enlightened ways to promote total workplace inclusion. Even though none of the participants in this study were working from home during the pandemic, the expanded capacity of technology to allow workers with and without disabilities to work from home will have an enduring impact on the way work is performed in the global economy long after the Coronavirus crisis is over.

4.6 Limitations

Readers should keep in mind a number of scientific limitations when interpreting our results. First, the case study design limited the sample to four participants. This approach restricts the representativeness of the participants in terms of the broader population of employed people with neurological disabilities and therefore limits the generalizability of findings. Second, this study was focused on incumbent employees, not on workers who had left the workforce for disability-related or other reasons. Although the larger project from which this study’s sample was drawn was expressly for employed people with mid-career disabilities, future studies focusing on job retention barriers from the points of view of workers with disabilities who have disengaged from their careers could add valuable insights regarding job loss following disability. It is also the case that the time frame of the investigation, which was conducted during the COVID-19 pandemic, represents an atypical historical period and therefore may not permit accurate observations of the job retention resource needs of workers with neurological disabilities in what will soon become the post-COVID era.