Focus group perspectives on high-priority employment barriers facing Americans with multiple sclerosis

Abstract

BACKGROUND:

People with multiple sclerosis (MS) are known to face a multitude of challenges as they attempt to re-initiate or maintain their careers following onset of the disease.

OBJECTIVE:

Less is known, however, about the subjective experiences of people with MS regarding employment barriers.

METHODS:

Using the results of a larger national survey of the employment concerns of people with MS that was conducted in 2014–2015 as a basis for data collection, this qualitative study involved six focus groups comprising 20 people with MS and 27 MS service providers.

RESULTS:

Focus group participants offered subjective perspectives on and suggestions for addressing employment barriers that represented four major themes: understanding the provisions of the Affordable Care Act, on-the-job accommodations and the Americans with Disabilities Act, reassignment as a job retention strategy, and disclosure of disability.

CONCLUSION:

Findings are discussed within the context of existing literature.

Keywords

Multiple sclerosis employment barriers vocational rehabilitation

1 Introduction

Numerous articles over the years have documented the difficulties that adults with chronic illnesses such as multiple sclerosis (MS) have in retaining employment (Antao et al., 2013). Research documents both the high unemployment rates of adults with MS, estimated to range from 56% to 80% in some studies (Chiu, Chan, Bishop, DaSalva Cardoso, & O’Neill, 2013; Smith & Arnett, 2005) and the high premature retirement rate of adults with MS (i.e., terminating employment on average five years after diagnosis; Uccelli, Specchia, Battaglia, & Miller, 2009). This significant rate of unemployment has unfortunate consequences both for the economy of the United States and the quality of life for people with MS (Ra & Kim, 2015). The economy suffers due to the loss of talented and well-educated employees long before it is necessary, and adults with MS suffer due to the loss of benefits resulting from employment. For example, adults with MS who find themselves unemployed must cope with increased financial pressures, social isolation, and stress resulting in health and psychological deterioration (Julian et al., 2008; Krokavcova et al., 2012). Efforts are therefore needed to counter forces that impair the ability of individuals with MS to return to or retain employment.

Given the important implications of unemployment, the purpose of this investigation was to involve consumers with MS and their service providers in focus groups discussing strategies to reduce or remove barriers to employment as reported by adults with MS in a national survey (Rumrill, Roessler, Li, Daly, & Leslie, 2015). According to survey results, adults with MS considered the following as the reasons why they experienced difficulty in resuming or retaining employment: inability to understand the health insurance provisions and protections of the Affordable Care Act, lack of knowledge as to how to discuss their job accommodation needs with employers, fear of employer retaliation following a request to review their accommodation needs, lack of information about the employment protections of Title I in the Americans with Disabilities Act Amendments Act (ADAAA), failure to receive consideration for other jobs in the same company if their MS prevents them from returning to their former jobs, and inadequate understanding of the benefits of disclosing disability status to their employers. In six focus group sessions, researchers asked participants, 20 consumers with MS and 27 service providers with experience working with people with MS, to brainstorm strategies to reduce or remove the six barriers to continued employment. Results from the study are presented in terms of themes that pertain to interventions needed to reduce the unemployment rate of adults with MS.

It is important to note that findings from the Rumrill et al. (2015) national survey echoed in many instances findings in previous research regarding factors resulting in unemployment of adults with MS. For example, implications of inadequate health insurance coverage and health care are apparent in findings that adults with MS who tend to retire early experience more severe MS symptoms, particularly in the cognitive realm (Julian et al., 2008; Krause, Kern, Horntrich, & Ziemssen, 2013; Moore et al., 2013). Simmons, Tribe, and McDonald (2010) expanded on the gravity of this situation in their findings that inability to manage symptoms of MS were often more significant in loss of employment than workplace factors. Better health care coverage and utilization of that coverage would help to alleviate the development of symptoms and to control those that do develop. It would also help to defray the costs associated with medical management of a chronic condition such as MS.

Simmons et al. (2010) also contended that the presence of MS symptoms that influenced the ability to perform satisfactorily on the job reinforced the importance of early disclosure on the part of employees with MS, an important recommendation were it not for problems associated with disclosure (e.g., social stigma associated with a chronic illness; Cook, Germano, & Stadler, 2016). As noted previously, respondents in the national survey (Rumrill et al., 2015) were dubious about the benefits of disclosure, were unsure about how to discuss their accommodation needs with their employers, and even feared employer retaliation if they did request a review of their accommodation needs. Vickers (2012) encountered similar themes in results from her focus group discussions with adults with MS. She found that respondents generally feared disclosing their MS due to the stigma associated with chronic illness in the minds of employers and co-workers. According to focus group results in Vickers’ research, employers too often feared that employees with chronic illnesses such as MS would become unproductive in their jobs, would continually need greater levels of on-the-job support, and would require expensive accommodations to retain their jobs.

Respondents in the national survey (Rumrill et al., 2015) also reported concerns about how to request accommodations from their employers successfully, an issue common to other research. Consistent with trends in discrimination allegations filed with the Equal Employment Opportunity Commission (EEOC; Neath, Roessler, McMahon, & Rumrill, 2007) and with self-reported on-the-job discrimination (Roessler, Hennessey, Neath, Rumrill, & Nissen, 2011), adults with MS frequently fail to receive on-the-job accommodations they deem appropriate. The pressing need for accommodation is evident in the finding that limitations from MS do influence job performance (Krause et al., 2013) and that most accommodations are not only available at reasonable cost but also are effective in enhancing productivity (Job Accommodation Network, 2014). Moreover, the rationale for the provision of accommodations is compatible with the core principle of the Minnesota Theory of Work Adjustment (Simmons et al., 2010; Swanson & Schneider, 2013). Gradual adjustments (i.e., on-the-job accommodations to enhance worker capabilities) are needed to ensure tenure on the job, which is a function of the person being satisfactory in the position and the position being satisfying to the person.

In some respects, the fear of requesting accommodations on the part of employees with disabilities is unwarranted in that their right to reasonable accommodation is protected under Title I of the ADAAA. Consequently, lack of understanding of ADAAA protections on the part of consumers is a significant, but remediable, threat to their ability to retain employment. The right to reasonable accommodation lays the groundwork for a more harmonious relationship between person and job as Simmons et al. (2010) noted, in that appropriate job accommodations allay concerns that adults with MS have about their employability. For example, they found that adults with MS possessed negative sentiments with the potential to precipitate premature retirement (e.g., feelings of being too stressed by the demands of work, fears of not being able to do a good job). Strategies to better inform people with MS about their protections under the ADAAA such as the right to reasonable accommodation, the inclusion of MS in the ADAAA as a covered disability, and the Act’s reiteration of the responsibility of the employer to cooperate in the accommodation process have the potential to deter early retirement. For all the above reasons, adults with MS need accurate knowledge of their rights and protections under the ADAAA.

Simmon’s et al. (2010) research also uncovered another theme consistent with findings in the recent national survey of adults with MS (Rumrill et al., 2015), namely, the importance of reassignment as a form of job accommodation. They found that individuals with MS often experienced reticence on the part of their employers to help them find more suitable employment in the same organization. The perceived failure of employers to use job reassignment as an accommodation strategy was also noted by respondents in the recent national survey. Although reassignment is a viable accommodation strategy, it is also one that the EEOC and ADAAA consider a strategy of last resort, thus underscoring a previous point regarding the importance of understanding the range of protections afforded by the ADAAA.

Without a doubt, barriers to retention of employment reported by adults with MS in a recent national survey (Rumrill et al., 2015) are not new in the field of MS employment research. But, it is because of their persistence and pervasiveness that additional research is needed to determine how contemporary consumers and service providers perceive these barriers and strategies to reduce or remove them. Therefore, in this study, consumers with MS and MS service providers discussed ways to remove long-standing barriers to employment by increasing consumers’ understanding of (a) available health insurance coverage, (b) strategies for discussing accommodation needs with employers without experiencing retaliation on the job, (c) protections under the ADAAA, (d) the use of job reassignment as a job accommodation technique, and (e) benefits from disclosing disability status to employers.

2 Method

Researchers interpreted input from consumer and professional focus group participants using qualitative procedures (Johnson et al., 2004; Morley, Tod, Cramp, & Mawson, 2013), treating consumers’ and service providers’ perspectives on strategies for reducing or removing barriers to employment acquisition and retention as important insights into the lived experiences of both groups. Consequently, results from analysis of focus group members’ comments are couched in their terminology as much as possible given the importance of ensuring that the research findings represent the collective perspectives of individuals with a shared experience of the phenomenon being studied (Koch, Niesz, & McCarthy, 2014).

2.1 Participants

Participants in this study included 20 people with MS and 27 professional service providers involved in MS rehabilitation or advocacy. The 20 consumer participants were predominantly female (65%), of European descent (65%, 25% African American, 10% Hispanic/Latino), and between the ages of 41 and 64 (70%). Thirteen consumer participants (65%) reported being employed for pay at the time of the focus groups, with nine employed full-time (45%) and four employed part-time (20%).

The 27 service providers were predominantly female (74%), mostly Caucasian (92.5%), and younger overall than consumer participants (48% were between the ages of 20 and 40 and 41% were between the ages of 41 and 64). Occupations represented among the 27 professionals included NMSS chapter staff (41%), non-NMSS mental health counselors or social workers (18%), state Vocational Rehabilitation counselors (15%), nurse (4%), psychologist (4%), and other occupations (18%).

2.2 Recruitment

Recruitment efforts resulted in participation by adults with MS and professional service providers familiar with the employment needs of adults with MS. Employment personnel in four NMSS chapters recruited adults with MS who were receiving services from those chapters. Potential consumer group members received a telephone call from a NMSS staff person requesting their participation in the focus group in their home community. Three consumer focus groups were conducted in Ohio, Pennsylvania, and Washington DC respectively; two professional focus groups were conducted in Ohio; and one focus group including both professionals and consumers was conducted in Arizona.

For all six focus groups, research team members used a purposeful sampling technique. Adults with MS who were receiving employment-related services from each of the participating NMSS chapters were contacted about joining the focus groups. Inclusion criteria for consumers included a diagnosis of MS, age range from 20 to 65, and involvement currently or in the past in NMSS chapter services pertaining to employment acquisition and/or retention. Inclusion criteria for rehabilitation professionals included background and training in vocational rehabilitation, counseling, or health care; experience working with adults with MS; and employment with a health care facility, mental health agency, rehabilitation agency, or the NMSS.

Participants were assured that they would remain anonymous in all reports of results from the focus group discussions. Because no names would be used in reporting, the research team explained to participants that their further participation in the focus groups would be considered informed consent, in accordance with Institutional Review Board policies at the project’s host institution. Participants were also assured that they could drop out of the focus group discussion at any point without consequence to them.

2.3 Data collection

Prior to beginning the focus group sessions, participants completed a biographical datasheet requesting information regarding their gender, age, racial/ethnic status, and current employment status. In the beginning of each focus group session, a member of the research team oriented participants to the purpose of the session (i.e., to discuss high priority weaknesses in employment services and explore strategies for reducing or removing those barriers to employment). Each participant received an interview guide by which he or she could follow the structure of the focus group session, and each session began and ended with a general question (what is the one factor that had the greatest impact on your employment success and what suggestion made today has the greatest importance for helping adults with MS reach their employment goals?).

Regardless of target group (consumer or professional), each focus group session lasted for two hours and was moderated by members of the research team. Researchers conducted the focus groups in NMSS office settings for consumer groups and in local rehabilitation agency offices for professional groups and the one blended consumer/professional group. Recorders, typically personnel of participating NMSS chapters who did not take part in focus group discussions, typed participants’ comments into a laptop computer file that followed the format of the interview. Using this procedure ensured that only experienced personnel were inputting comments from consumers with MS or the professionals serving them. To the greatest extent possible, recorders entered comments verbatim in order to accurately reflect respondents’ experiences. These comments constituted the field notes that members of the research team reviewed following completion of all of the focus groups.

Although informal in style, the focus group sessions emphasized high priority employment problems identified in a national survey of adults with MS including a geographic sample of 9 states or regions in the country and Washington, DC. (Rumrill et al., 2015). Researchers used prompts or questions to guide participants back to the specific employment problem under discussion or to clarify suggestions about strategies for reducing or removing barriers to employment for adults with MS. The most prominent employment barriers identified by respondents in the national survey conducted by Rumrill et al. (2015) fell into four broad themes: understanding the Affordable Care Act, on-the-job accommodations and Title I of the ADAAA, reassignment as a job retention strategy, and disclosure of disability. Throughout the data collection sessions, research team members continued to stress that the participants were the experts and that the primary intent of the focus group was to elicit and record their ideas about improving employment services.

2.4 Data analysis

Initially, three research team members individually read all field notes resulting from the focus groups. Without consulting with other members of the research team, each researcher listed the employment problem under discussion and all strategies mentioned by consumers and service providers in their words as closely as possible. In the second step, research team members followed a process referred to as investigator triangulation (Koch et al., 2014). To ensure the trustworthiness of the results, they met to review their lists of strategies, discussed differences in perceptions, reviewed transcripts when necessary, and reached consensus about how to phrase the strategies consistent with group member input (Johnson et al., 2004; Morley et al., 2013). Because members of the research team conducting the analysis had each participated in two or more focus group sessions, they were familiar with the way in which participants discussed employment problems and strategies to reduce or resolve those problems. The findings were further validated by asking two of the note takers (personnel of participating NMSS chapters) to verify that the consensual strategy statements developed by the research team were consistent with their understanding of focus group input.

3 Results and discussion

This blended Results and Discussion section is organized around the four major themes of employment barriers that were first identified by more than 1,900 respondents in the national survey conducted by Rumrill et al. (2015) and subsequently used to guide focus group discussions in this study. Participants’ perspectives on the barrier themes of understanding the Affordable Care Act, on-the-job accommodations and Title I of the ADAAA, reassignment as a job retention strategy, and disclosure of disability are annotated with applications to existing literature on the current employment situation for people with MS.

3.1 Understanding the affordable care act

It is not surprising that focus group participants echoed the concerns of national survey respondents regarding the 2010 Affordable Care Act (ACA; Wickert, Dresden, & Rumrill, 2013). Although this law has been highly politicized and remains controversial several years after its enactment, the ACA does represent comprehensive and important legislation protecting Americans’ rights to health insurance and medical treatment. One focus group participant with MS said, “Obamacare, or I guess they call it the Affordable Care Act, gives me insurance that costs only $125 per month. Before that I had no insurance and had no way to pay for my medications. So I know Obamacare isn’t perfect, but I’m glad to have it.”

Indeed, the ACA 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 (Roessler et al., 2015). One service provider, however, pointed out the following problem with the 30-hour requirement to obtain employer-based health insurance:

I help people with MS and other disabilities get jobs, and since the law took effect I have noticed that a lot of jobs out there are being posted at 29 hours per week. I asked one employer why all of their jobs are for only 29 hours per week and she told me straight out that her company does this to avoid paying health insurance premiums under the ACA. This is a problem.

The ACA 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 (Kalb, 2016). Several focus group members with MS in one group were surprised to learn of this provision when one of the other group members informed them about it. One woman remarked, “I wish I’d known that – here I’ve been staying with a job I don’t like because I am afraid that switching employers and insurance companies would tip them off to my MS and maybe interfere with my coverage.” Furthermore, the ACA 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 (Bishop & Rumrill, 2015; Murray, 2016); no longer must people with MS worry about exhausting their health insurance coverage as they experience age-related changes in their health status.

One nurse who took part in a focus group observed that a possible reason for the ACA showing up as an employment barrier in the national survey lies in the lack of understanding of the law on the part of people with MS and service providers, not in the provisions of the law itself. She urged other service providers to inquire about the health insurance status of all clients and patients with MS and to direct people with MS to electronic and written resources that explain this complicated law in understandable terms. Perhaps one focus group member with MS said it best: “It can’t help me if I don’t know what it’s all about.” People with MS and service providers alike agreed that 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 ACA, and they must make concerted efforts to communicate those provisions to adults with MS if this employment-related barrier is to be ameliorated. One service provider who worked for the NMSS stated that all 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. Several consumer focus group members noted that the NMSS and other advocacy organizations provide information to newly diagnosed people with MS through fact sheets, e-mail correspondence, social media, and support groups. Another person with MS asked, “Do you think doctors know about Obamacare? If so, maybe they could tell their patients about it. If I have health insurance, I’m a paying customer!”

3.2 On-the-Job accommodations and Title I of the ADAAA

Several of the employment weaknesses identified by people with MS in the Rumrill et al. (2015) national survey pertain to deficiencies that respondents identified 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 ADAAA. Emblematic of the concerns that people with MS have related to on-the-job accommodations is the recent experience of one unemployed consumer focus group member who had worked for 22 years as a public school teacher:

This is a huge problem. Two years ago I asked my principal for a very simple accommodation – all I wanted was to have an aide from the office come to my classroom and be with my kids if I needed a bathroom break, maybe twice a day for five minutes. The principal flatly refused; he said if he did that for me he’d have to do it for everyone, although that isn’t true. A few weeks later I left my kids unattended to go to the bathroom, and the principal wrote me up. Two weeks later, I had to go again so I went. I got a second reprimand. At the end of the school year, I got a notice that my contract wasn’t being renewed for the following year. 22 years down the drain.

One service provider who worked as a state vocational rehabilitation counselor aptly pointed out that the ADAAA of 2008 instituted important changes that might obviate problems related to implementation of workplace accommodations for people with MS and other disabilities. 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; Rubin, Roessler, & Rumrill, 2016; Strauser, 2013). One consumer focus group member said, “I didn’t think the ADA applied to me. I have MS, but I didn’t think I had a disability.”

Fortunately, the ADAAA strengthens 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 simplifies 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). Similarly, conditions considered to be in remission such as MS or cancer, often through mitigating measures (e.g., medication, medical aids), are considered disabilities if they would substantially limit the person in life activities when active or without the benefits of mitigating measures. One focus group participant recalled reading a brochure about these changes in qualification standards at an NMSS-sponsored conference for newly diagnosed people. Several other focus group members, however, indicated a lack of information about the ADAAA and the accommodation process as a major issue undermining their future career prospects.

With these changes made in disability determination, the ADAAA places greater emphasis on determining whether discrimination occurred and whether the employer made adequate efforts to reasonably accommodate (Roessler & Rumrill, 2015). One focus group member who worked full-time as a registered nurse was not convinced:

Last year I made a complaint to the government about the harassment I was getting at work. I asked for several accommodations – no dice. My employer asked me if I wanted to cut my hours to part-time. I said no, I need the health insurance coverage. Then they put me on nights, 11 to 7. My fatigue doesn’t allow me to be up all night. I just can’t do it. The government said my employer had the right to treat me that way. It doesn’t seem right. I wish I knew more about the ADA.

In relation to initiating a request for an accommodation, the participant quoted above and other people with MS need to know that they have access to ADAAA protections to guard against retaliation from employers. A psychologist who participated in one group session noted that 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 ADAAA does not obviate the need for the employee with MS to approach the process in a thoughtful and skillful way. Several consumer participants noted that self-advocacy skills are one of the most important elements of effective job retention for people with MS. As one man noted, “It’s not what you ask for, it’s how you ask. Sometimes you have to give a little to get a little.”

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 (2015) recommended that employees initiate an informal and friendly dialogue with their employers without mentioning the ADAAA at first. 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. Several professional participants and two consumer participants suggested that helpful advice is available from the nearest chapter of the National MS Society, the Job Accommodation Network (2014; AskJan.org, 800-526-7234 (voice), 877-781-9403 (TTY), and the state vocational rehabilitation program.

Consumer focus group participants repeatedly noted the benefits of a wide range of on-the-job accommodations that are consistent with existing research (Julian et al., 2008; Leslie et al., 2015). Several participants noted the importance and low cost of flexibility in work hours and regularly scheduled breaks. One participant who had mobility impairments emphasized ergonomic job modifications and improved workplace accessibility. Consumer and professional focus group members alike identified the need for more effective compensatory and assistive technology strategies to combat the cognitive limitations associated with MS. One employed consumer remarked, “the physical stuff is easy to figure out – if I’m getting tired, I need to sit down and rest. But what about my memory problems, or problems I have in organizing my thoughts. Those are harder to accommodate even though my employer is pretty supportive.”

The skillful approach to identifying and requesting an accommodation involves preparation, and it can be cognitively demanding. 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. Of course, this presupposes that the employee knows what accommodations he or she needs. One consumer responded as follows to researchers’ inquiry about the accommodation process and why it appears to be a source of concern for many people with MS: “How am I supposed to ask for an accommodation when I don’t even know what accommodations I need? The way MS is, I never know which symptoms I’ll be having on any given day. That makes it kind of hard to plan on anything.”

Several service providers indicated that employers of people with MS frequently ask questions about the cost-effectiveness of workplace accommodations and how they might alter the nature of the business. One service provider shared that she frequently works with people with MS in determining when to ask for accommodations or other supports. In a job interview, the applicant with MS is not required to request an accommodation prior to being offered the job (Roessler & Rumrill, 2015), but he or she may request an accommodation at any time. Whether the accommodation request is during the job interview or following tenure on the job, the worker with MS is required to reveal his or her disability status (not necessarily his or her specific diagnosis) and then may be asked for documentation from a physician. The complexity of the accommodation process, coupled with the cognitive limitations that often accompany the disease, makes it imperative that people with MS have access to accurate resources and service providers who are knowledgeable about workplace accommodations and other provisions of the ADAAA. “Knowledge is power,” as one consumer focus group member put it.

3.3 Reassignment as a job retention strategy

Given that reassignment to another position within the same company or organization is viewed in ADAAA title I regulations as a last resort after all other accommodation strategies have proven unfruitful (Roessler & Rumrill, 2015), it is not surprising that this issue is a major source of concern for people with MS in general and for this study’s participants in particular. Rumrill, Fraser, and Johnson (2013) 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. Similarly, consumer focus group members frequently voiced problems with being reassigned to another job as a job retention measure. Some of their quotes on this matter were as follows:

“I asked my boss to assign me to a light-duty job because of my fatigue and coordination problems. He just laughed.”

“I was afraid to ask my employer for a job change because I knew the union wouldn’t go along with it.”

“They reassigned me to a job as a dispatcher, which is sitting down all the time. It’s working out well so far but they keep asking me when I can go back to driving. I’d like to keep the dispatcher job but they think of it as temporary. Problem is, my MS is permanent.”

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. Several service providers emphasized the importance of ongoing supports to help people with MS who are either returning to work after an extended absence or are reassigned to another position. One vocational rehabilitation counselor said, “Same employer, different job – it’s in the return-to-work hierarchy from my intro classes in grad school. I wonder why employers don’t seem to do it very often. It seems to me that a good worker, and an experienced one, like most people with MS, should be worth keeping.” One of the above-presented consumer concerns regarding union responses vis a vis reassignment to another job might explain why employers may be reluctant to implement the last-resort accommodation of reassignment. If the employer is unionized, it may be necessary for the rehabilitation counselor and the worker with MS to consult the collective bargaining agreement for rules regarding seniority and other criteria that are considered in making reassignment decisions (Schultz & Gatchel, 2016).

3.4 Disclosure of disability

The benefit of disclosure of disability is that it places the individual under the protections of the ADAAA. The risk of disclosure is that it may result in stigmatizing the employee with a disability (Smart, 2009; Strauser, 2013). Of course, the protections provided by the ADAAA address nondiscrimination in the workplace generally and provision of reasonable accommodations specifically (Roessler & Rumrill, 2015; Rubin et al., 2016). The ADAAA 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. However, applicants or incumbent employees are under no obligation to disclose the presence of disability if they do not need an accommodation. One consumer focus group participant accurately noted, “I only need to tell them [about my disability] if I need some kind of help doing my job [an accommodation], right?” Several vocational rehabilitation professionals who took part in focus group sessions said that they advise clients with MS whose symptoms are not readily apparent or do not necessitate on-the-job accommodations to not disclose anything about their health status unless their symptoms become obvious or require consideration on the part of employers. One of them remarked, “I think there is a tendency for people with MS, and other disabilities for that matter, to over-disclose, you know, tell people too much about their disability. I like to tell my clients they should keep health information to themselves as long as possible. Once you disclose, you may not be able to get your privacy back.” On the other hand, three consumer participants had a different take on disclosure, one rooted in not wanting to be dishonest or disingenuous in dealing with employers or co-workers. One of these individuals stated, “I have MS, okay? It wasn’t my idea and it wasn’t my fault, but I’m not ashamed of it. I’m certainly not going to hide it, not from anyone.”

Another issue with disclosure of disability is that it represents an acknowledgement that the employee is no longer able to perform job duties without accommodation. One employed consumer focus group participant said:

I disclosed to my boss two years ago and it has worked out fairly well, but it felt to me like I was admitting I couldn’t do my job anymore. My boss made some changes to my schedule, so I guess you would call that an accommodation, but I wonder if they [boss and co-workers] have it in the back of their minds that I’m not as good as I used to be, that maybe I can’t keep up. So sometimes I think it would have been better to just keep my mouth shut about it.

This individual’s comment suggests that disclosure may expose the person to stigma associated with disability, giving rise to negative expectations on the part of some employers, as previously noted. Several participants with MS related incidents between themselves and co-workers or supervisors that reflect less subtle stigmatization. One person noted that co-workers began regularly inquiring about her health after she disclosed her MS, asking her “how are you doing?” or “are you okay?” even at times when her MS was in remission. Another employed participant noticed that his employer began assigning some of his job tasks to other employees, telling him on one occasion, “with your MS you don’t need to worry about that – I’ll just have Frank do it.” Two participants asserted that they had been denied promotions they felt they deserved shortly after disclosing their MS to their employers.

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 following disclosure of the person’s disability status, such as 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 (Nissen & Rumrill, 2016). In their focus group study, Sweetland, Riazi, Cano, and Playford (2007) 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. Here again, Roessler and Rumrill’s (2015) ‘win-win’ approach to reasonable accommodations provides concrete steps that people with MS can take to redress discriminatory conduct on the part of employers. One NMSS service provider recommended the National ADA Network, which has 10 regional technical assistance and advocacy centers distributed geographically across the United States (Rubin et al., 2016; Strauser, 2013), as an important no-cost resource for people with MS who would like more information about the ADAAA and procedures for redressing discrimination.

3.5 Limitations

By its very nature, qualitative research does not lend itself to generalization. However, as argued by Morley et al. (2013), results using such a methodology do provide valuable insights into how a collection of experts believes that employment services and outcomes for adults with MS could be improved. Their suggestions merit careful consideration. One should note the study’s limited point of view in that the majority of the consumer participants were White females (Rigles, Ipsen, Arnold, & Seekins, 2011); however, this proportion of White females is representative of the national population of adults with MS (Murray, 2016). Nevertheless, the authors are aware of the importance of cultural differences and have completed two studies providing insights into employment issues confronted by Hispanic adults with MS (Roessler et al., 2016) and African American adults with MS (Rumrill, Li, Roessler, Umeasiegbu, & Bishop, 2016).

4 Conclusion

The purpose of this study was to elicit qualitative perspectives on the highest-priority employment barriers facing Americans with MS. Six focus groups of people with MS (n = 20) and MS service providers (n = 27) were conducted in three states and Washington, DC to identify the meaning that stakeholders ascribe to barriers related to the Affordable Care Act, workplace accommodations and the ADAAA, job reassignment, and disclosure of disability. Those four themes of employment barriers, which emerged from a national quantitative survey of Americans with MS conducted by the authors of this article in 2014-2015 (Rumrill et al., 2015), were also sources of concern for focus group participants in this study.

Not only did focus group participants offer perspectives on these barriers, they suggested a number of strategies by which people with MS and MS service providers can remove or reduce those barriers. Primarily, these suggestions involved increasing access for people with MS to information regarding Federal laws such as the Affordable Care Act and the ADAAA, more responsive services from health care providers regarding employment issues, self-advocacy training for people with MS to more effectively assert their rights in the workplace, and clearer procedures for disclosing disability and requesting needed on-the-job accommodations. Vocational rehabilitation professionals who become familiar with the employment barriers facing people with MS and the meaning people with MS and MS service providers assign to those barriers will enhance their capacities to provide responsive and effective services to this growing rehabilitation and health care clientele.

Conflict of interest

None to report.

Footnotes

Acknowledgments

This research was funded through a Health Care Delivery and Policy Research grant from the National Multiple Sclerosis Society, New York, NY. The authors wish to thank the National Multiple Sclerosis Society, its participating chapters, and the study participants for their support and assistance with this research. The authors are also grateful to Cassidy Pittman of the Center for Disability Studies at Kent State University for her clerical and editorial assistance with this study.

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