Abstract
BACKGROUND:
The COVID-19 pandemic has wrought an unprecedented toll on vocational rehabilitation efforts to assist workers with disabilities in maintaining their careers.
OBJECTIVE:
To demonstrate the use of a psychometrically sound assessment instrument and resource-driven planning procedure to help workers with disabilities resume or retain their employment.
METHODS:
Four employed people with neurological disabilities who took part in a larger job retention project funded by the United States Department of Labor completed structured interviews to determine their needs for employment accommodations during COVID-19. A trained interviewer administered the Work Experience Survey (WES) in teleconsultation sessions with each participant to identify: (a) barriers to worksite access, (b) difficulties performing essential job functions, (c) concerns regarding continued job mastery, and (d) extent of job satisfaction.
RESULTS:
Owing primarily to the sequelae of their disabling conditions and less so to social distancing requirements and telecommuting technology, participants reported a wide range of accessibility barriers and difficulties in performing essential functions of their jobs that they believed had the potential to significantly affect their ongoing productivity. Considering the stress and uncertainty that have accompanied the COVID-19 pandemic, it is surprising that the majority of participants reported high levels of job mastery and job satisfaction.
CONCLUSION:
The interviewer concluded the WES interview by recommending a job accommodation plan, which included suggestions from Job Accommodation Network (JAN) consultants.
Introduction
Research clearly documents the multiple ways in which mid-career disability constitutes a significant life stressor. The presence of a disability that affects one’s employment status has the potential to undermine an individual’s health, cognitive and psychological functioning, personal relationships, long-term vocational outcomes, life outlook, and overall quality of life (Kosciulek, 2007; Martz & Livneh, 2007). Without rapid-response return-to-work interventions focused on health maintenance, transitional or light-duty employment, and workplace accommodations, the worker with a mid-career disability progresses through sick or injury leave, short-term disability, and long-term disability to membership on Social Security Disability Insurance (SSDI) rolls (Marini, 2003; Rubin et al., 2016). The health, economic, and community living costs of disengagement from the labor force are high for the worker with a disability, and the costs to society of maintaining the ex-employee on Federal disability benefits is also high (Strauser, 2014).
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).
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).
Mid-career disability and personal resources
Symptoms of mid-career injuries and illnesses result in loss of resources pertaining to physical, cognitive, and affective functioning, losses that are further exacerbated by the interruption of the person’s ability to work. The medical and psychological characteristics of the injury or illness are predictors of unemployment (Rubin et al., 2016). Physical limitations include issues with mobility, coordination, fatigue, and bodily functions. Cognitive limitations influence a person’s capacity to process and retain information, and affective symptoms are manifested in depression; anxiety; and reduced self-esteem, personal control, overall mental health, and resilience (Alvaro et al., 2010; Dirik & Karanci, 2010; Fraser et al., 2009; Krause et al., 2013; McNulty, 2007; Wu & Amtmann, 2013). Andrew and Andrew (2017) noted that people with neurological injuries and illnesses (e.g., stroke, multiple sclerosis [MS], traumatic brain injury [TBI]) are particularly vulnerable to experience interruptions in personal functioning as a result of the multi-systemic effects of their disabilities. The effects of mid-career neurological disability on career development range from decreased hours and responsibilities to disengagement from the labor force and long-term unemployment (Rubin et al., 2016; Strauser, 2014). Although the data are somewhat equivocal regarding gender, research indicates that other personal resources (e.g., age and education level) can mediate the negative effects of injury and illness on employment status (Dirik & Karanci, 2010; Julian et al., 2008; Krause et al., 2013; Moore et al., 2013; Simmons et al., 2010).
Mid-career disability and condition resources
Mid-career disability, especially resulting from a neurological condition, threatens losses of condition resources that buffer the negative impact of the illness or injury. Loss of social roles (e.g., spouse, employee, family member, worshipper, recreational participant) is a common outcome of mid-career disability and therefore a significant drain on condition resources (Kosciulek, 2007; Nissen & Rumrill, 2016). Employees with MS, for example, often hesitate to disclose their illness for fear that their employers will view them as potentially less productive workers who will require excessive support (VanDenend, 2006; Vickers, 2012). Although eager to remain employed or return to work, people with mid-career injuries or illnesses frequently encounter support systems (e.g., family members, physicians) who encourage them to stop working as an injury or illness management technique (Johnson et al., 2004).
Mid-career disability and object resources
Object resources pertain to tangible aspects of the environment that support pursuit of primary life motives such as self-preservation and well-being. Quality and accessibility of housing and adequacy and reliability of transportation are two very important examples of object resources (Bishop et al., 2013; VanDenend, 2006). Housing and transportation barriers are often identified by people with spinal cord injuries, stroke, and TBIs (Koch & Rumrill, 2017). Frequently associated with mid-career disabilities that result in job loss, any loss of these resources leads to higher levels of stress and to the “vicious circle” of stress and negative long-term health, vocational, and financial outcomes.
Mid-career disability and energy resources
Energy resources represent commodities such as money, time, physical and psychological energy, and knowledge that are required in the pursuit of resources in the other three categories. Mid-career neurological disability threatens current and future levels of income, which impedes access to adequate health care and ability to maintain home and family (Smith & Arnett, 2005; Uccelli et al., 2009). Sometimes more time, energy, and knowledge are required to fulfill the responsibilities of work and home life to satisfy primary life motives given the energy resources that people must marshal to cope with their injuries or illnesses (Johnson et al., 2004). As a drain on each of these energy resources, mid-career disability, especially neurological disability, and the impact it has on employment are construed as a collective threat, thereby increasing a person’s level of perceived stress and compromising long-term outcomes (McNulty, 2007).
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).
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.
Method
Utilizing qualitative purposive sampling techniques (Creswell, 2014), the authors selected the four participants in the study to represent a range of career fields and job duties. The sample, drawn from the participant registry of a Federally funded demonstration project to promote job retention for workers with mid-career injuries and illnesses (see Author Note), was limited to four participants to enable an in-depth description of each participant’s job retention profile (see Results section).
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.
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.
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.
Results
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.
Accessibility
This participant reported a number of accessibility concerns regarding parking, the temperature in her building, the ventilation, the entrance, access to general use areas, and hazards or obstacles in pathways and in her office. She also reported that the vending machines in the facility are far away from her desk, so she has to do much walking to obtain snacks or drinks. The parking lot at her building is quite large, and she explained that she frequently has to park far away and walk a long distance to get to the building, which contributes to her fatigue and often drains her of strength. She also mentioned that the ventilation in the office is poor, and that she often finds herself feeling either too hot or too cold, which can lead to discomfort, distract her from her duties, and interfere with her memory and concentration.
Essential functions
With respect to barriers in the performance of essential job functions, this participant identified a total of 22 problems from the checklist: working 8 hours straight; some kneeling; much talking; seeing well; using her right hand; using her right leg; immediate memory and short-term memory; thought processing; problem solving; repetitive work; work pace/sequencing; performing under stress or deadlines; following specific instructions; writing; remembering; speaking/communicating; working alone; working with hostile others; too cold in building; temperature changes; and obstacles in path.
Job mastery
Participant #1 did not report any concerns regarding job mastery. She did not have any plans for career advancement at the time of this interview.
Job satisfaction
Participant #1 indicated moderate levels of dissatisfaction with her current job. She responded, “too little” to the following statements: “I can work alone on the job,” “I do something different every day,” “my pay compares well with that of other workers,” “the job has good working conditions,” and “I can do the work without feeling it is morally wrong.” Additionally, she responded “too much” to the statement “I do things that make use of my abilities,” indicating that she often has too much work to do, that her energy is easily exhausted, and that she sometimes is asked to do things that are beyond her abilities.
Employee-identified accommodations
The culminating section of the WES asks participants to suggest reasonable accommodations for their most prominent job retention barriers and identify resources that could assist them in implementing those solutions. When asked which three of the 35 total barriers the participant reported were the most significant or intrusive, she identified mobility, seeing well, and a “tie” between fast-paced work and not being able to work alone. Regarding mobility barriers, some potential solutions that the participant identified were moving to an office that may be closer to important destinations for her (e.g., restrooms, vending machines, conference rooms, the entrance to the building). Since fatigue and loss of strength were also barriers for her, she suggested that she may benefit from some mobility aides to assist her in navigating from point A to point B. Loss of vision was another significant barrier for participant #1. She explained that the solutions to her low vision would be quite simple, including large-print display software for her computer, having larger print on physical paperwork and documents that she handles, and a magnifying glass. The barriers of fast-paced work and not working alone both seemed to be related to feelings of anxiety for participant 1. She explained that, when she is overwhelmed with work, she feels anxious, busy, and isolated. After some thought, this participant explained that simply slowing down, doing one task at a time, writing things down, keeping organized, and prioritizing tasks may help her balance the excess workload and also subdue some of her anxiety or feelings of stress and urgency.
Accommodation strategies suggested by the job accommodation network
After completing the WES interview with participant #1, the interviewer consulted the Job Accommodation Network (JAN) and visited the JAN website for additional recommendations to address the participant’s highest-priority job retention barriers. JAN consultants suggested the following strategies that the participant’s employer could implement to help this individual cope with her mobility issues, paying particular attention to her difficulties with balance and fatigue/loss of strength: Provide an all-terrain scooter. Provide a cane. Provide a walker. Provide a low task chair. Install grab bars. Explore other personal transportation and mobility products. Provide an aide/assistant/attendant. Provide and/or install ergonomic equipment. Facilitate a flexible work schedule. Restructure certain aspects of the job. Allow periodic rest breaks. Implement telework or allow the employee to work from home or work remotely. Redesign the worksite/modify the workspace.
To address the issues with vision that the participant identified, JAN consultants recommended the following as possible accommodation choices: Accessible mobile phones. Apps for individuals with vision impairment. External computer screen magnification. Head-mounted magnifiers. Large button phones. Large visual display for telephone. Low vision office supplies. Screen magnification and screen reading combined. Screen magnification software.
Finally, JAN offered several accommodation suggestions regarding difficulty with fast paced work and being unable to work alone: Apps for organization/time management. Checklists. Color coded filing/organizational system. Electronic organizers. Job coaches. Job restructuring. Excuse the employee from performing marginal functions. Organization software. Reminders from the employer. Task separation. Wall calendars and planners. Written instructions. Apps for anxiety and stress. Behavior modification techniques. Counseling/therapy (and allowing the participant time off work to attend the sessions). Disability awareness/etiquette training to coworkers and other staff. Employee assistance programs. Flexible scheduling. Support animal and/or support person.
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.
Accessibility, essential functions, job mastery, and job satisfaction
Of the four participants in this study, participant #2 noted the fewest barriers across sections of the WES. Regarding accessibility of the worksite, she indicated that the job site was totally accessible and that there were no barriers. She did report some barriers to performance of essential job functions, which are as follows: standing all day; walking for eight hours; some kneeling; seeing well; lifting 10–25 pounds; and short-term memory. As for job mastery and job satisfaction, participant #2 indicated no barriers, explaining that, since she has been at this position for a “quarter of a century,” she does not plan on leaving or advancing in her position and has “no complaints, none at all,” in her words.
Employee-identified accommodations
At the end of the structured interview, the participant was asked which three barriers that she mentioned throughout the WES interview were the most significant obstacles to her success at work, and if there were any other barriers she was experiencing that she had not yet mentioned. The participant identified lifting, standing for too long, and walking/kneeling for long periods of time as the three most significant issues.
Regarding lifting heavy weight (she indicated 25 pounds or so being her limit), participant #2 suggested that a simple solution to this barrier could be to ask for help from a coworker- whether it be for a “team lift” or to ask the co-worker to lift or carry the item for her. She also suggested that restructuring of the job would be a useful accommodation. In a similar vein to waiving marginal functions, here the employer could restructure the tasks of the job and no longer require this participant to solely lift objects weighing more than 25 pounds. Whenever something of that weight or greater needs to be lifted or relocated, the employer could remember to either ask another employee to complete the task or ensure that someone else will be present to assist the participant.
Standing for too long was another significant barrier for this participant. Some accommodation suggestions that were noted here were being allowed to take sitting breaks, being provided with a comfortable stool, and being reassigned to another position in the facility that requires less standing.
The last barriers that the participant and the interviewer discussed in-depth were the participant’s difficulty with walking and kneeling. The participant readily identified several accommodations to help with these issues, including: exercise and strength training to help improve her overall physical functioning and balance issues; handles (grab bars) to pull herself up after kneeling; soft floor matting/padding for her to kneel on; and asking a coworker to help her up.
Accommodation strategies suggested by the job accommodation network
JAN consultants recommended the following accommodation strategies to help this participant with issues she is having with memory: Additional training time/ training refreshers. Apps for memory. Electronic organizers. Recorded directives, messages, materials, and reminders. Verbal cues. Wall calendars and planners. Written instructions.
In terms of accommodations to overcome issues this participant is having with balance and her reported fatigue/loss of strength, JAN recommended: A cane. Grab bars. Ergonomic equipment. Flexible schedule. Job restructuring. Low task chair. Periodic rest breaks. Worksite redesign/modified workspace.
Finally, to assist with her lifting difficulties, JAN offered the following solutions: Provision of carts. Compact material handling. Provision of lift tables. Periodic rest breaks. Education on proper lifting techniques.
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.
Accessibility
Due to being self-employed, this participant does not have a designated worksite. He travels from location to location and works at a number of different settings. Therefore, because the majority of the items in this portion of the survey are job-site-specific (e.g., the entrance, elevators, bathrooms), the questions were asked in more general terms. This participant noted difficulties with parking (and driving), the temperature often being too hot (when he works outside), and the “lighting” (i.e., the sun) being too bright. This participant noted that, in regard to parking and driving, he often feels self-conscious, and that people are looking at him disapprovingly or “judging him” when he gets out of the car due to his difficulties with balance and ambulation.
Essential functions
This participant checked a total of 23 essential job functions that pose problems for him. They included: working 8 hours, some stooping (it makes him feel dizzy), some climbing, much talking, seeing well, using right hand, lifting over 100 pounds, immediate memory, short-term memory, interpersonal judgement (the participant noted he often feels depressed and “shuts down” and has difficulty navigating social/interpersonal situations and interactions), thought processing, problem-solving, planning, organizing, work pace/sequencing, remembering, speaking/communicating, working alone, interacting with supervisors (in this case, the supervisors being the homeowners or whoever hired him to do the job), working conditions being too hot and too wet, encountering slippery surfaces (especially on rooves after rain), and often being outdoors.
Job mastery and job satisfaction
Similar to participants 1 and 2, this third participant did not report any barriers in regard to job mastery. He also noted no items of dissatisfaction on the job satisfaction scale, even though he had numerous accessibility and essential function concerns. This may relate to his stated feelings of autonomy regarding his self-employed status.
Employee-identified accommodations
The third participant generated several possible solutions to his on-the-job barriers. The three most significant barriers he reported were driving, working alone, and depressed/anxious moods resulting in low motivation. As for driving difficulties, this participant noted that he often experiences social anxiety when people watch him get in and out of his vehicle. He also noted that he often feels “on edge” while he is driving –claustrophobic, panicked, and concerned about getting lost. Some potential solutions he identified included having someone go with him (such as a support person or a support animal); using his phone or a GPS for navigation; bringing a water bottle with him so he can pull over, have a drink, and catch his breath if he starts to feel panicked; and calling people for support if he starts to feel lonely or anxious. This leads to the next significant barrier identified by participant 3, difficulty working alone. Here, the participant related that when he works by himself, he often feels that something negative might happen to him. He said he tries to distract himself with his work and by listening to music and podcasts using headphones. He also explained that he always keeps friends and loved ones informed of where he is working. That way, if anything does happen to him, they will know where to find him. Finally, the last barrier reported by this participant was his “depressed mood” and lower levels of motivation. When asked about what the participant does or might consider doing to alleviate these barriers, he responded that he needs to take better care of himself, paying deliberate attention to his diet and exercise; participate in more mindful, relaxation, breathing-centered exercises such as yoga and stretching; sleep more effectively; take up some new hobbies outside of work; and seek mental health counseling.
Accommodation strategies suggested by the job accommodation network
JAN offered several helpful accommodation suggestions for this participant. Particularly focusing on his mental health concerns and his anxiety when driving and while he is at work, these suggestions included: Designate a rest area or a private space for himself where he can go on his breaks to relax. Breaks throughout the work day. A support animal. With the help of a counselor, identify and reduce environmental triggers for panic attacks and anxiety. Apps that help with anxiety and/or stress.
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.
Accessibility
This participant reported a total of four concerns about the accessibility of her worksite. These included restrooms (she noted that she is often not allowed restroom breaks); lighting (being too bright and causing her headaches); floors/floor coverings (she often trips when she walks); and seating/tables (she sometimes experiences pain/discomfort in her back when she is seated).
Essential functions
Of the 75 item prompts in the essential functions section, participant #4 identified 33 as barriers to job performance related to her MS. The concerns included physical abilities (i.e., working for 8 hours, walking for 8 hours, some kneeling, some stooping, seeing well, hearing well, using both legs, using her right hand [particularly her thumb], lifting 25–50 pounds), cognitive abilities (i.e., immediate memory, short-term memory, long-term memory, thought processing, reasoning, planning, organization), task-related abilities (i.e., work pace/sequencing, variety of duties, performing under stress/deadlines, reading written instructions, being able and licensed to drive, writing [citing difficulties with spelling and grammar], remembering, speaking/communicating, initiating work activities), working conditions (i.e., too cold, odors, always inside), and company policies (i.e., inflexible work schedules, inflexible job descriptions, vague job descriptions, infrequent reviews of job descriptions, rigid sick/vacation leave policies).
Job mastery
In contrast to the first three participants, this participant identified several concerns that affect her success in completing career advancement tasks. These included “having what I need to do my job (knowledge, tools, supplies, equipment),” “scheduling and planning my work ahead of time,” “knowing who to go to if I need help,” “knowing my way around work,” “feeling a ‘part’ of what is going on at work,” “having a plan for where I want to be in my job in the future,” “knowing what training to complete to improve chances for promotion,” “talking with my supervisor about what I need to do to get promoted,” and “considering what I will do in the future.”
Job satisfaction
For the job satisfaction section of the WES, this participant gave “too little” ratings in response to the following statements: “I do things that make use of my abilities,” “The job gives me a feeling of accomplishment,” “I do something different every day,” “My pay compares well with that of other workers,” “The job has good working conditions,” “The job provides an opportunity for advancement,” “I get recognition for the work I do,” “I am ‘somebody’ in the community,” and “My boss backs up the workers with top management.” She responded with “too much” to “I am busy all the time.”
Employee-identified accommodations
This participant identified memory issues, stress, and fatigue as her most significant functional barriers. To help with her difficulty in remembering, she stated that one possible accommodation may lie in modifying her job role such that she would have fewer responsibilities and tasks to manage. She also suggested that a personal assistant could help her keep track of her job tasks and timelines. The interviewer and the participant also discussed some useful assistive technology devices and memory “apps” for her smart phone or tablet computer that could help her compensate for cognitive limitations. Regarding the heightened levels of stress she experiences on the job that hinder her productivity and psychological well-being, she again cited some procedural modifications that could be made. These included being allowed additional time to complete tasks, having a reduced workload, and being allowed to take breaks at specified intervals. Finally, to address the difficulties she often faces with fatigue, she identified having an extended lunch break so she could rest and recover her energy as a possible accommodation.
Accommodation strategies suggested by the job accommodation network
To address participant 4’s reported cognitive and memory issues, JAN suggested the following as accommodation options: Additional training time/training refreshers. Apps for memory. Electronic organizers. Job coaches. Memory and organizational software. Electronic prompts scheduled at specified intervals. Digitally recorded directives, messages, and materials. E-mail and text message reminders from supervisors. A support person. Verbal cues. Wall calendars and planners. Written instructions.
JAN consultants also recommended several strategies for reducing stress: Apps for organization/time management. Checklists. Clear communication from supportive supervisors. Breaking tasks down into manageable components. Apps for anxiety and stress. Counseling/therapy. Environmental sound machines/tinnitus maskers/ white noise machines. Flexible schedule. modified break schedule. rest area/private space.
Finally, JAN offered the following as accommodations to help combat and minimize fatigue: Aide/assistant/attendant. Ergonomic equipment. Job restructuring, eliminating physically demanding or tiring tasks. Periodic rest breaks. Worksite redesign/modified workspace.
Discussion
The main objective of this study was to demonstrate a strategy (i.e., the WES) that provides a situational, easy-to-administer, and worker-centered assessment of the interaction between employed people with disabilities and their immediate work environments. Never before has the interaction between workers with disabilities and their work environments been more important than it is during and in the aftermath of the COVID-19 pandemic. That said, it is noteworthy that all four participants were working primarily at their actual worksites at the time of their interviews, which were conducted during the pandemic. Consistent with the different contexts in which participants worked and the different effects of their neurological disabilities, a variety of accessibility, essential function, and job satisfaction concerns emerged from the WES interviews. Although only one of the four participants indicated any barriers in regard to job mastery and career advancement, those results are still worthy of consideration given the highly individualized nature of career choice and development (Zunker, 2015).
First and perhaps foremost, as would be expected within a sample of workers with neurological disabilities, participants reported a wide range of cognitive limitations that interfered with their success in the workplace. These included difficulties with immediate memory, short-term memory, long-term memory, thought-processing, reasoning, organization, and problem-solving. They also experienced physical difficulties such as fatigue and loss of strength, balance problems and difficulty walking, and some problems with kneeling. Regarding psychological functioning and processes, the majority of participants indicated difficulty with one form of anxiety or another, whether it be due to work-related stressors such as deadlines and busy work schedules or to more existential/global worries and concerns. Three participants also indicated feeling symptoms of depression and loneliness or being “unable to work alone” on the job, along with their moods being described as “up and down.” Some other commonalities among participants included difficulties concentrating, working for 8 hours, barriers to parking, temperature changes at the facility/job site, too far of a distance between their work stations and important break destinations such as vending machines and restrooms, floor coverings being inaccessible (due to slippery surfaces and other obstacles in the path), and sensitivity to bright light.
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.
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).
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.
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.
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. Communicate with other employers and community agencies regarding accommodation techniques and resources. Determine that all company policies are consistent with ADA guidelines regarding such considerations as job interviewing, medical testing, and promoting employees. Consult with rehabilitation professionals in the development and implementation of accommodations for employees. Evaluate accommodation efforts to determine whether they have had the desired effects.
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.
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.
Conclusion
As the beginning point in a targeted, early-intervention job retention program, the WES is a practical method for identifying barriers that workers with mid-career neurological disabilities encounter in their efforts to stay in the labor force. WES interview results can prompt discussions among workers, employers, healthcare providers, and rehabilitation professionals about ways to reduce or remove those barriers, with the assistance of national-level resources such as JAN. The WES helps workers and rehabilitation professionals specify the ways in which disability influences access to the worksite, performance of essential functions, job mastery, and job satisfaction. If left unaddressed, problems in each of these areas have the potential to drain the worker of personal, condition, object, and energy resources that are necessary for continued employment. Addressing these problems and helping workers build job retention resources, however, constitute an important vocational rehabilitation intervention that may help society to more fully capitalize on the valuable labor resource that exists within the disability community.
Conflict of interest
None to report.
Disclaimer
The preparation of this article was funded by the United States Department of Labor, Office of Disability Employment Policy in the amount of $3.5 million under Cooperative Agreement No. OD-32548-18-75-4-21. This document does not necessarily reflect the views or policies of the U.S. Department of Labor, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.