The employment concerns of Americans with multiple sclerosis: Perspectives from a national sample

1.1.1 Demographic factors

Age and gender are two demographic variables that predict employment outcomes for adults with MS [9–16]. Typically, older minority group individuals with MS are less likely to be employed. Results are mixed regarding the impact of gender, with women with MS more likely to be unemployed than men in some studies but not in others [4, 17]. Both men and women with MS are more likely to leave the work force if they have a spouse who is working [18]. People with MS who have higher levels of education and/or more money in savings and investments are more likely to be employed than are those in lower socioeconomic strata [10, 19]. This finding may not be surprising given that people with higher levels of education tend to occupy positions that require less physical exertion, and the physiological effects of MS therefore may not impose work impediments to the extent that they do for those whose jobs require more physical exertion. Similarly, Smith and Arnett [20] reported that individuals with MS holding higher occupational statuses had the flexibility and, most probably, the authority to maintain employment by cutting back on their work duties and hours.

1.1.2 Disease-related factors

Several studies have revealed the exacerbation and progression of physical symptoms to be strong predictors of job loss [14, 21]. In denoting the most frequently cited reasons that people with MS leave the work force, Rumrill [8] and Fraser et al. [22] noted that as many as 30 percent of unemployed people with MS attribute their jobless status to the physiological effects of the illness, especially fatigue. Nearly half of unemployed respondents in a survey of people with MS conducted by Edgley et al. [23] cited ambulation difficulties as the primary reason for leaving the work force. Thirty-nine percent described fatigue as the most important contributing factor. Bishop et al. [12] reported that people with MS whose physical disabilities compromised the accessibility of their home environments and/or their ability to travel independently were at much greater risk for job loss than were people with MS who have more accessible homes and transportation options.

Roessler et al. [19] found that people who experience MS symptoms most or all of the time, especially if the persistent symptoms are greater in number and more severe, are more likely to be unemployed than people with other symptom patterns. More symptoms, more persistent symptoms, and more severe symptoms are generally associated with primary or secondary progressive MS, so it follows that people with progressive forms of the disease are at greater risk for job loss than people whose MS experience is more episodic and/or less intrusive.

Cognitive deficits associated with MS are one of the most frustrating aspects of the illness [22, 24–26]. By their own reports, employees with MS identified significant career maintenance barriers and resultant needs for on-the-job accommodations related to thought-processing and memory deficits in a study conducted by Rumrill, Fraser, and Johnson [27]. Roessler et al. [19] found people with MS who reported cognitive impairments four times more likely to be unemployed than people with MS who did not report cognitive impairments.

People with MS often experience affective disorders and psychological problems that can affect their prospects for continued employment. In a recent follow-up study of the on-the-job accommodation patterns of employed people with MS, Rumrill et al. [27] found that workers with MS had the most difficulty arranging workplace accommodations to address depression, anxiety, and bipolar disorder. Relatedly, Krause et al. [14] also found that individuals reporting higher depressive symptom levels were more likely to be unemployed.

1.1.3 Contextual factors

The previous discussion summarized the well-known impact of the more unchangeable demographic and physiological characteristics on the employment outcomes of individuals with MS. However, the intent of this research was to investigate contemporary contextual factors influencing the employment status of adults with MS and to examine strategies for ameliorating perceived barriers to employment in workplace, rehabilitative service, and social programs. Past research provides insights into the types of environmental conditions requiring attention.

Ketelaer et al. [28] reported that people with MS employed in the medical field and in jobs that required them to work out-of-doors, stand for long periods of time, and/or exert physical strength were far more likely to lose their jobs than were those working under other occupational conditions. Duggan et al. [29] simply asked unemployed people with MS why they had left their jobs. Approximately 75 percent reported stopping work voluntarily, but worksite barriers were frequently cited as reasons for that choice. These on-the-job obstacles included less-than-helpful employee assistance programs and a lack of reasonable accommodations. Many respondents believed that they could have benefited from such assistance as home-based work, education for their employers about MS, and individual employment counseling. A number of respondents also felt that information concerning the Americans with Disabilities Act (ADA), other legal protections, health insurance, and Social Security Disability Insurance would have helped them to retain employment.

Supportive of the need for contemporary research regarding the way in which perceptions of contextual barriers change, Rumrill et al. [30] reported survey results for 227 adults with MS in a mid-western state in which respondents were satisfied with their access to adequate health insurance. They also were satisfied with other employment supports, e.g., encouragement to take control of their lives, access to similar benefits at work as other workers (e.g., compensation), support regarding personal potential to work, and availability of reasonable accommodations at work. In the Rumrill et al. [30] survey, adults with MS identified the following areas as deficiencies in employment programs and policies: protection against discrimination in the hiring process; access to service providers who are knowledgeable about the needs of people with MS; availability of adequate information about Social Security programs; assistance in making plans for the future; access to employers to discuss reasonable accommodation needs; adequate information about funding for assistive devices at work; and the availability of retraining, if needed to return to work.

Again underscoring the need for contemporary research, other studies document that, across time, people with MS are not always in agreement when it comes to identifying employment strengths. In fact, in these studies, areas referred to as employment strengths in other reports were singled out as employment deficiencies. For example, people with MS in Jackson and Quaal’s [31] survey and in O’Day’s [32] qualitative study reported a lack of employer support and difficulties accessing reasonable accommodations at work (i.e., employment deficiencies).

Information reported by LaRocca et al. [33] and Jackson and Quaal [31] corroborated findings in the Rumrill et al. [30] survey. In those studies, people with MS indicated that they were not well prepared to return to work and expressed desires for additional training. Individuals with MS identified other deficiencies inherent in employment services. For example, people with MS were concerned about the lack of workplace protections such as those included in Title I of the Americans with Disabilities Act (ADA). In one study predating implementation of the ADA, respondents indicated that they needed greater (a) flexibility in their work hours and work settings (e.g., work at home), (b) availability of assistive technology at work, and (c) physical accessibility of the work environment [31]. In calling for more research to identify barriers to employment for people with MS, Jackson and Quaal [31] reported another weakness in employment services for workers with MS, namely the lack of periodic on-the-job follow-up and support services for employees who are coping with chronic illnesses such as MS (see also [34, 35] for a discussion of the need for job retention services).

Though the choice to leave the work force is most often made by the person with MS himself or herself, it is not entirely clear to what extent the phenomenon of discrimination in the workplace affects that choice. What is known is that perceived discrimination is a major obstacle to continued employment following diagnosis with MS, and that people with MS often believe that their employers treat them unfairly in comparison to workers without disabilities. In the national survey conducted by Roessler et al. [6], no fewer than six items related to implementation of the ADA and the Family and Medical Leave Act (FMLA) were reported among the 12 most prominent employment-related problems identified by Americans with MS. Specifically, the majority of respondents reported having been treated unfairly in the hiring process by employers (73%), having been denied reasonable accommodations (58%), having received lower pay compared to their peers who are without disabilities (53%), being refused schedule modifications that would have enabled them to continue working (59%), having received inadequate health insurance coverage (73%), and having received little or no information about their legal rights from employers (69%).

Between 1992 and 2003, the United States Equal Employment Opportunity Commission (EEOC) received and resolved 3,669 allegations of employment discrimination from people with MS under Title I of the ADA [36]. Allegations of unlawful termination constituted the most commonly cited form of workplace discrimination (29.9%), followed in descending order by complaints related to reasonable accommodations (21.9%), terms and conditions of employment (9.8%), harassment (6.7%), hiring (3.8%), discipline (3.4%), constructive discharge (i.e., creating a work environment that makes it impossible for the person to continue working; 3.0%), layoff (2.8%), and promotion (2.5%). People with MS filing ADA Title I allegations were mostly female (66.5%), predominantly Caucasian (76.1%), and of mid-career age on average (M = 42.47 years, SD = 8.54). Allegations were most often filed against employers in the South United States Census tracking region (35.7%), and employers in the service, financial, insurance, and real estate industries were most often the subjects of ADA Title I complaints.

In comparison to ADA Title I complainants with other disabilities, people with MS were more likely than people with other disabilities to allege discrimination under Title I of the ADA in the areas of reasonable accommodations, terms and conditions of employment, constructive discharge, and demotion; less likely to allege discrimination in the area of hiring; and more likely to have their allegations of discrimination resolved in their favor by the EEOC [37].

Contextual factors outside of the workplace also have an impact on the careers of adults with MS. For example, it is well documented that people with MS who receive disability benefits from private insurers or from government agencies face extreme difficulties in restarting their careers. Indeed, the benefits paid by most long-term disability insurance carriers and the Social Security Administration’s two disability programs (i.e., Social Security Disability Insurance [SSDI] and Supplemental Security Income [SSI]) are predicated on the beneficiary being too disabled to work [38]. This requirement provides a powerful systemic disincentive that keeps thousands of Americans with MS from participating in the labor force. Once they have been adjudicated as too severely disabled to work by either long-term disability insurers or Social Security (or sometimes both), they integrate the external confirmation of their disabled status into their own self-concepts – self-concepts that do not necessarily include the role of worker [39]. From that point on in the vast majority of cases, unemployment and receipt of disability benefits conjoin in a self-fulfilling prophecy for people with MS. According to Fraser et al. [40], people with MS progress from active employment to short-term disability insurance, long-term disability insurance, and, finally, SSDI at higher and faster rates than people with most other disabilities. This is especially problematic given the estimate that less than one percent of Americans with MS who receive SSDI benefits will ever resume gainful employment [13, 22].

4.1.1 High strengths

The most prominent employment strengths for people with MS cluster into themes such as personal control and expectations of others, employee benefits, communication with employers, equitable workplace policies and fair treatment, physical accessibility of the work place, performance evaluation, and access to service providers. Compared to findings from the 2002 Roessler et al. survey, which predated the ADA Amendments Act, the Affordable Care Act, and the Great Recession, these high strength themes suggest significant progress in the optimism that people with MS hold for their future employment prospects. These findings indicate that perceptions of people with MS regarding the cooperativeness of employers, access to service providers, and the independence with which employment and other life decisions are made have improved considerably since the turn of the 21st Century. So, too, are improvements evident in the perceived fairness of personnel policies, in employee benefits, and in the physical accessibility of the workplace.

The fact that these improvements in the perceptions of people with MS regarding their employment situations have not translated into improvements in the rate of labor force participation underscores what a durable and deeply entrenched phenomenon unemployment is as an accompaniment of MS. Undoubtedly, factors such as disincentives in disability benefits programs [38], the combined effects of cognitive and mobility impairments [24], and more subtle forms of workplace discrimination [36] are more potent impediments to employment than these perceived strengths are facilitators of job retention and return to work.

Still, the overall employment picture for people with MS is likely to improve over time if continued progress is realized in (a) the access that people with MS have to service providers, (b) their communication with employers, (c) the control and independence that people with MS assert in their lives, and (d) the attitudinal and physical work environment. The state-Federal vocational Rehabilitation (VR) program, which has historically underserved people with MS, could contribute to this ongoing progress through redoubled outreach and consultation efforts aimed at people with MS. Nissen and Rumrill [45] called upon VR counselors to increase job retention and post-employment services for people with MS who are currently employed but who are at risk of losing their jobs. Bishop et al. [12] underscored the importance of helping people with MS procure assistive technology and access transportation as a means of enhancing community and labor force participation. Fraser et al. [24] exhorted rehabilitation professionals to interface with both health care providers and employers in providing employment assistance to people with MS. These strategies would help to preserve the high strength items identified by respondents in the present study.

4.1.2 Moderate strengths

The 16 moderate-strength items cluster into themes such as Social Security and other disability benefits, training and advancement opportunities, health insurance coverage, hiring and promotion policies, access to technology, layoff and termination, and civil rights and workplace discrimination. Here, the need for accurate information, focused advocacy efforts, and direct services concerning these critically important employment issues is clear.

Specifically, to move these moderate-strength items into the high-strength designation, people with MS need up-to-date and easily understandable information about Social Security disability programs, employer-based short and long-term disability insurance benefits, and private or employer-based health insurance benefits. They also need to understand employer policies regarding discipline, layoff, and termination, not to mention what to do if they experience those actions in a manner that is unfair or unlawful.

Information about the 2008 ADA Amendments Act will help people with MS understand their civil rights to fair treatment in the workplace [46]. This law is discussed in greater detail in subsequent paragraphs, and rehabilitation professionals can play an important role in educating people with MS about changes to the ADA that hold significant promise for people with MS. Likewise, accessible information concerning the Affordable Care Act, which was the most prominent weakness identified by respondents in this study, could enhance awareness of health insurance benefits and protections among people with MS, thereby preserving and bolstering the moderate strength associated with health insurance coverage in general.

Finally, the employment situation for people with MS could be enhanced if services and supports related to on-the-job training and promotion or advancement could be improved. Consultation for people with MS regarding their next career steps helps solidify their identities as productive workers, which is especially important given that the onset and progression of MS often require them to reconsider their vocational identities [45]. Maintaining their identities as productive workers makes people with MS less vulnerable to self-perceptions that focus on declining health, dependency, and lack of employment potential [39], and it enables them to enjoy longer and greater access to the well-documented health and lifestyle benefits of paid employment [7, 47].

4.2.1 Understanding the affordable care act

For adults with chronic illnesses such as MS, the Affordable Care Act of 2012 represents comprehensive and critical legislation protecting their right to health insurance and medical treatment [41]. The Affordable Care Act provides access to low-cost insurance coverage to people who are uninsured and requires employers to provide group health insurance coverage for employees who work at least 30 hours per week, the latter provision being especially important for people with MS who may need to reduce their hours at work due to changes in their health status [45]. This law also prohibits health insurance companies from excluding people from coverage based on pre-existing conditions in a more comprehensive manner than was previously set forth in the Health Insurance Portability and Accountability Act [41]. Needless to say, people with MS and other chronic illnesses will benefit greatly from the elimination of pre-existing condition exclusions, which were identified as a major employment weakness in the only other national survey of employment strengths and weaknesses among people with MS [6]. Furthermore, the Affordable Care Act prohibits health insurance companies from imposing annual or lifetime “caps” on coverage, a provision that will benefit people with MS as their life expectancies continue to increase at rates similar to those of the general public; no longer must people with MS worry about exhausting their health insurance coverage as they experience age-related changes in their health status.

Given the fact that the item regarding the Affordable Care Act was the greatest source of dissatisfaction among all 38 items in this employment concerns survey, it is imperative that people with MS have access to clear and understandable information about the important protections available to them through this legislation. Advocacy and direct service efforts to help people with MS understand their health insurance options and access quality health care are an important adjunct to state Vocational Rehabilitation and other employment-related services for people with MS. Physicians, social workers, nurses, counselors, and rehabilitation professionals alike must be well versed in the provisions of the Affordable Care Act, and they must make concerted efforts to communicate those provisions to adults with MS if the most prominent weakness reported by respondents in this study is to be ameliorated. All working Americans dealing with MS should understand that employers are required to provide health insurance coverage to full-time workers, that adults with MS cannot be denied coverage due to the presence of a pre-existing condition, and that adults with MS do not face any type of lifetime “cap” to their coverage.

4.2.2 On-the-job accommodations and Title I of the ADA

Three of the employment weaknesses pertained to deficiencies that respondents experienced regarding how to initiate a discussion of their need for an accommodation, how to review accommodation options without invoking employer resistance (i.e., retaliation), and how to carry out the entire process within the protections of the ADA. All three of these weaknesses are closely connected in terms of subject matter, with the best beginning place being an understanding of the important changes regarding on-the-job accommodations present in the ADA Amendments Act (ADAAA)).

Prior to the ADAAA, people with disabilities first had to achieve the designation of “person with a disability,” which was no easy task given concepts in the legislation such as “substantial limitation” and “mitigating measures.” Put simply, an individual with MS might not qualify for protected class status under the ADA (i.e., person with a disability) if his or her MS was episodic and not substantially limiting at certain times or if the effects of the MS were controllable with medication or other medical aids (i.e., mitigating measures).

Thanks to the work of disability advocates, Congress implemented the ADAAA on January 1, 2009 with specific provisions that strengthen the position of people with MS in their efforts to present their accommodation needs to their employers and to discuss their options without retaliation from the employer. First, the ADAAA simplified the process of qualifying for protections accorded a person with a disability by specifying that some impairments are automatically considered disabilities without a test of “substantial limitation” (e.g., multiple sclerosis, deafness, blindness, diabetes, epilepsy, cancer, psychiatric disorders, muscular dystrophy, HIV and AIDS to name a few). Similarly, conditions considered to be in remission such as MS or cancer, often through mitigating measures (e.g., medication or medical aids), are considered disabilities if they would substantially limit the person in life activities when active or without the benefits of mitigating measures. Rather than disability determination, the ADAAA placed greater emphasis on determining whether discrimination occurred and whether the employer made adequate efforts to reasonably accommodate [46].

In relation to initiating a request for an accommodation, people with MS need to know that they have easier access to ADA protections to guard against retaliation from the employer. Employees with MS should find reassurance in two implications of the legislation. As previously noted, the impetus in the ADAAA is on successful accommodation and job retention, not on disability determination. Second, the implicit assumption in the ADAAA is that failure to reach agreement on an accommodation may stem from a lack of good faith on the part of the employer rather than intransigence on the part of the employee. However, simply understanding and invoking, if necessary, one’s rights under the ADA does not obviate the need for the employee with MS to approach the process in a thoughtful and skillful way.

Following a prescribed process for requesting an accommodation or reviewing accommodation options can potentially reduce the possibility of retaliation on the employer’s part. In their Win-Win brochure available from the NMSS, Roessler and Rumrill [48] recommend that employees initiate an informal and friendly dialogue with their employers without mentioning the ADA. The thoughtful part of the process presumes that the employee with MS has identified the problem that he or she is having and the range of available accommodations to reduce or remove those problems. Helpful advice is available from the nearest chapter of the National MS Society, the Job Accommodation Network (AskJan.org, 800-526-7234 (voice), 877-781-9403 (TTY), and the state vocational rehabilitation office. Julian et al. [10], Uccelli et al. [5], and Krause et al. [14], listed a variety of accommodations worthy of consideration such as flexibility in work hours, regularly scheduled breaks, ergonomic job modifications to address dexterity or mobility limitations, improved workplace accessibility, and compensatory techniques for coping with cognitive limitations in attention and information processing.

The skillful approach to requesting an accommodation involves preparation. In preparing to request a review of one’s accommodation needs, the employee with MS should generate a written list of accommodations and then analyze each as to how it would increase the person’s productivity and how the employer or supervisor would respond. Important questions from the employer’s perspective include whether the accommodation would be cost effective and how it might alter the nature of the business. In a job interview, the applicant with MS is not required to request an accommodation prior to being offered the job. Whether the accommodation request is during the job interview or following tenure on the job, the worker with MS is not required to reveal his or her diagnosis but may be asked for documentation from a physician.

4.2.3 Reassignment as a job retention strategy

Given that reassignment to another position within the same company or organization is viewed in ADA title I regulations as a last resort after all other accommodation strategies have proven unfruitful [45], it is not surprising that this issue is a major source of concern for people with MS. Rumrill et al. [27] reported that reassignment was one of the least frequently implemented workplace accommodations for people with MS, and requesting reassignment was met with more employer resistance than any other accommodation option identified by workers with MS. Accordingly, rehabilitation professionals seeking to help people with MS retain employment must work closely with employees and employers to consider and evaluate all other possible accommodations before a reassignment is contemplated. Then, if all other accommodation options are exhausted and the worker is reassigned to another position, support must be provided to help the worker adjust to his or her new job, including any accommodations that would aid in the performance of job tasks. If the employer is unionized, it may be necessary to consult the collective bargaining agreement for rules regarding seniority and other criteria that are considered in making reassignment decisions.

4.2.4 Disclosure of disability

The benefit of disclosure of disability is that it places the individual under the protections of the ADA. The drawback of disclosure is that it, in some cases, may result in stigmatizing the employee with a disability. Of course, the protections provided by the ADA address nondiscrimination in the workplace generally and provision of reasonable accommodations specifically [48]. The ADA mandates that an individual with a disability cannot be fired from a position if he or she is able to perform the essential functions of the position with or without reasonable accommodation. If an accommodation is needed, the individual should follow the previously discussed thoughtful and skillful request strategy to minimize negative reactions. The proper accommodation should enable the individual to perform the essential functions of the position and resume acceptable levels of productivity, and Simmons et al. [49] stressed the importance of “gradual accommodation of emergent symptoms in the workplace” (p. 934) as an effective job retention strategy. However, applicants or incumbents are under no obligation to disclose the presence of disability if they do not need an accommodation.

The issue with disclosure of disability is that it represents an acknowledgement that the employee is no longer able to perform job duties without accommodation. For this reason, Vickers [1, p. 194] recommended that employees with MS “wait to disclose until you have proven yourself to your employer.” While that recommendation may apply in some situations, it also allows small problems to become large ones, thereby threatening the person’s job security [49].

As Vickers found, disclosure can expose the person to stigma associated with disability, giving rise to negative expectations on the part of some employers. Respondents with MS in Vickers’ qualitative study believed that disclosure caused some employers to view them as unable to return to their prior levels of productivity. In some cases, employers anticipated that the employees with disabilities would no longer be able to make money for them and that this first request was only the beginning of the adjustments the employee would seek, thereby increasing the costs of retaining the individual and the envy of nondisabled workers who might request similar changes in their jobs. It is at this point that the nondiscrimination provisions of the ADAAA and the advocacy of the Equal Employment Opportunity Commission are critical if evidence of discrimination occurs, e.g., use of differential and unfair standards of evaluation, increased demands for productivity, overbearing and more frequent supervisory oversight, bullying by co-workers, and requests to assume additional and inappropriate responsibilities [1]. In their focus group study, Sweetland, Riazi, Cano, and Playford [50] reported that adults with MS requested more assistance from advocates (e.g., a work specialist therapist) at this complex stage who could both intervene with the employer and educate employees with MS about discrimination legislation and legal protections.