Priority employment concerns identified by Americans with MS residing in rural areas: Results of a national survey

Abstract

BACKGROUND:

This article presents descriptive findings from a sub-sample of 414 people with multiple sclerosis (MS) residing in rural areas that was derived from a national survey of the employment concerns of Americans with MS.

OBJECTIVE:

Respondents were asked to evaluate 38 employment concerns items on two dimensions, importance and satisfaction, for the purpose of identifying strengths and weaknesses in the employment policies and practices affecting the labor force participation of Americans with MS.

RESULTS:

Results revealed a total of 13 employment strengths and 25 employment weaknesses that must be addressed in direct service and advocacy efforts if more rural residents with MS are to continue their careers while coping with this intrusive and unpredictable disease.

CONCLUSION:

Implications of these findings for future rehabilitation programming and research are examined.

Keywords

Multiple sclerosis employment rural

1. Introduction

In this article, we (a) describe key issues related to the employment outcomes of people with multiple sclerosis (MS) who reside in rural areas and (b) recommend effective rehabilitation interventions to address those issues. In spite of significant differences among people with MS in access to health care, transportation, and employment opportunities across community population densities (Murray, 2016; Nissen & Rumrill, 2016), the specific employment and vocational rehabilitation experiences of rural residents with MS have not been thoroughly examined in extant research. Thus, the aim of this study was to identify high-priority employment concerns from the perspectives of a national rural sub-sample of people with MS whose needs for employment services and supports must be better understood by rehabilitation professionals, employers, and other stakeholders.

1.1 Disability and employment in rural areas

Research has consistently shown that the combination of rural residency, lack of employment, and poverty is directly tied to health status and disability (Harley & Cartwright, 2018; Weber, Jensen, Miller, Mosley, & Fisher, 2005). Poverty is a well-documented social concern in rural areas, and disability status appears to have an intensifying effect on this phenomenon. In fact, more than one-fifth of rural residents with disabilities are living in poverty (21.5%) compared to one-eighth of their non-disabled counterparts (12.5%). This poverty gap is amplified when examining working-age adults living in rural areas; more than one in four (28.1%) of rural adults with disabilities live in poverty compared to 12.2% of those without disabilities (Erikson, Van Looy, von Schrader, & Bruyere, 2018). There is a significant employment gap in these rural regions, with persons with disabilities employed at about half the rate of persons without disabilities. Only 35.3% of working-age rural individuals with disabilities participate in paid employment. This rate decreases to 24.3% for those individuals with disabilities residing in persistently poor rural counties. Further, the disparity in the quality of the limited employment opportunities available to individuals with disabilities living in rural areas is problematic; even those who do obtain employment earn about 70% the amount of those without disabilities (Erikson et al. 2018). Despite the low employment participation rate of people with disabilities in rural areas, rural employers report difficulty in identifying and retaining qualified applicants and express little understanding of how to tap the potential labor resource that exists within the disability community (Council on Economic Advisors, 2014).

Overall, rural residents are more likely to be unemployed; smoke more; exercise less; have less nutritious diets; and are at greater risks of experiencing diabetes, cancer, obesity, back pain, hypertension, heart disease, drug and alcohol addiction, and mental health disorders compared to people living in more densely populated communities (Harley, Ysasi, Bishop, & Fleming, 2017). For individuals with MS living in rural areas, the reciprocal relationship between unemployment and declining health has been identified as a particularly prominent concern (Nissen & Rumrill, 2016).

1.2 Overview of multiple sclerosis

MS is an immune-mediated disease characterized by inflammation and demyelination in the central nervous system (CNS; National MS Society [NMSS], 2018). Demyelination, or damage to the myelin sheath, results in disruption in the transmission of nerve impulses between the brain and the spinal cord (Falvo, 2018). MS is a chronic, often progressive disease associated with a wide range of symptoms, the most common of which are fatigue, numbness, gait-related difficulties, spasticity, vision problems, sexual dysfunction, weakness, dizziness and vertigo, pain, bowel and bladder problems, cognitive impairment, depression, and emotional changes (NMSS, 2018). Even more intrusive than the wide-ranging symptoms that can accompany MS is the unpredictable and episodic course that the disease typically follows (Kalb, 2016).

MS is one of the most common neurological diseases in the world, with an estimated prevalence of 2.3 million people worldwide and 450,000 in the US (Multiple Sclerosis Coalition, 2015; NMSS, 2018). Approximately 10,000 new cases of MS are diagnosed each year in the US. Although MS can occur at any age, initial symptoms are most often evident during early adulthood, typically between the ages of 20 and 50 (Kalb, 2016), the period of life associated with career awareness, acquisition, and establishment (Super, 1980; Strauser, 2014). In fact, half of MS diagnoses occur before the person’s 30th birthday, three-quarters of Americans with MS were diagnosed before the age of 40 (Fraser, Kraft, Ehde, & Johnson, 2006), and the mean disease duration is 38 years (Moore et al., 2013).

Epidemiological studies have revealed higher MS prevalence rates in temperate regions of the globe than in warmer climates. Countries that have particularly high rates of MS include the United Kingdom, Canada, Germany, Denmark, Norway, Sweden, Finland, and the United States (Murray, 2016). Two-thirds of Americans with MS reside in the northernmost 50 percent of the general populace, with Vermont and Washington reporting the highest prevalence rates (Fraser et al., 2006). MS has historically been much more common among Caucasians of European descent than among people of color, but recent studies indicate that the incidence of MS among African Americans and Hispanics/Latinos in the United States is increasing dramatically (Langer-Gould, Brara, Beaber, & Zhang, 2013). MS is two to three times more common in women than in men, a gender link that is found in a number of other autoimmune diseases, and the ratio of women to men who are diagnosed with the disease appears to be increasing (NMSS, 2018).

1.3 Impact of MS on employment and career development

As Moore et al. (2013) and others (e.g., Strauser, 2014; Sweetland, Riazi, Cano, & Playford, 2007) have noted, employment is one of the most important societal commitments. In addition to financial remuneration, employment provides opportunities for social interaction and support, access to health insurance and other forms of security, a sense of identity, and self-esteem.

The onset of MS and subsequent development of disability have consistently been found to cause a significant disruption in people’s career and educational paths. Data from several recent population-based surveys suggest that only 40–45% of working-age Americans with MS are engaged in the labor force, with women with MS being significantly less likely to be employed than their male counterparts (Bishop et al., 2013; Julian, Vella, Vollmer, Hadjimichael, & Mohr, 2008; Rumrill, Roessler, Li, Daly, & Leslie, 2015). Further, though more than 95 percent of Americans with MS have employment histories, and some 82 percent were working at the time of their diagnosis (Rumrill et al., 2015), only an estimated 20% to 30% of Americans with MS are employed 15 years after their diagnosis (Fraser, Clemmons, & Bennett, 2002; Roessler, Neath, McMahon, & Rumrill, 2007).

Americans with MS are gravely concerned about their employment prospects and frequently dissatisfied with professional and legislative responses to their concerns. In their national survey of more than 1,900 Americans with MS, Rumrill et al. (2015) identified the treatment respondents received from employers in the workplace, implementation and enforcement of the Americans with Disabilities Act Amendments Act, health care and health insurance coverage, and Social Security disability programs as several of the most important employment-related issues facing people with MS.

A considerable body of research has been committed to understanding the reasons for the high rate of unemployment among people with MS and to exploring the predictors and correlates of employment. This research has led to improved understanding of the complexity of this situation and contributed to the development of more effective vocational rehabilitation interventions. However, for all that is known about the factors associated with labor force participation among people with MS in general, the specific employment experiences and concerns of people with MS who reside in rural areas are not well understood.

People with disabilities living in rural communities face unique challenges and vulnerabilities due to social and economic factors associated with limited access to resources, infrastructure needs, and geographic location. These barriers manifest themselves in decreased employment, health, and overall quality of life (Givon, 2016). In addition, as indicated previously, poverty, particularly persistent poverty, is more evident in rural America than in urban areas (Weber, 2007). The limited rural employment research that has been conducted with people with MS suggests that those in rural areas may experience “double disadvantagement” based on their community circumstances and disability status, increasing the barriers to career development relative to those experienced by people who live in urban and suburban areas and those without disabilities (Nissen & Rumrill, 2016). Findings from this study, which were drawn from a sub-sample of rural residents with MS who responded to the Rumrill et al. (2015) national survey, fill an important gap in the knowledge base, providing a contemporary view of the strengths and weaknesses in rural employment policies and practices that affect people with MS.

1.4 Research questions

The research questions for this investigation were as follows:

What are the most important employment concerns from the perspectives of rural residents with MS?

What are the important employment concerns with which rural residents with MS are most satisfied (i.e., what are the strengths in employment policies and practices)?

What are the important employment concerns with which rural residents with MS are least satisfied (i.e., what are the weaknesses in employment policies and practices)?

2. Method

Data for this study were collected as part of a larger national survey of the employment concerns of people with MS. A more detailed description of the procedures used in the larger survey can be found in Rumrill et al. (2015).

2.1 Participants

The sub-sample for this investigation consisted of 414 people with MS who identified their communities as rural, including 376 Caucasians (90.8%), 14 African Americans (3.4%), 12 Hispanics/Latinos (2.9%), 4 Native Americans or Alaska Natives (1.0%), and 1 Asian or Pacific Islander (0.2%). Seven respondents (1.7%) reported “Other” races or ethnicities or did not respond to the race/ethnicity item. The sample was 78 percent female and 22 percent male. The average age of respondents was 54.83 years (SD = 11.00). One hundred forty-eight (148) respondents were employed for pay at the time of the survey (36.1%), with 23.2 percent reporting full-time employment and 12.9 percent reporting part-time hours. Among employed respondents, about one-quarter (22.3%) indicated that they had requested workplace accommodations from their employers, and 59 employed respondents (39.9%) reported using workplace accommodations at the time of the survey. Curiously, these findings indicate that some respondents were using on-the-job accommodations that they had never requested. The most commonly used types of workplace accommodations were changes in work schedules (used by 20.9% of employed respondents), followed in descending order of frequency by changes in job duties/procedures (9.5%), modifications of work station or company physical facilities (8.1%), work at home part of the time (7.4%), modification of equipment (5.4%), reassignment to another position (4.1%), work at home all of the time (4.1%), installation of new assistive equipment (1.4%), reader (0.7%), driver (0.7%), and personal care assistant (0.7%).

The sub-sample of rural residents with MS was an experienced (98.3% had employment histories and 85.7% were still working at the time of diagnosis) and well-educated group of workers (98.8% were high school graduates and 50.4% were college graduates). Two-thirds of the participants in this study were dealing with the relapsing-remitting form of MS (66.1%), and the mean number of MS symptoms reported was 7.9 (SD = 3.82). In descending order of frequency, the most commonly reported symptoms were fatigue (reported by 83.6% of the sample), diminished physical capability (66.9%), balance/coordination problems (65.2%), gait/mobility problems (56.5%), bowel/bladder dysfunction (53.4%), tingling in the extremities (53.1%), cognitive impairment (52.2%), numbness (51.7%), spasticity (44.9%), pain (44.4%), sleep disturbance (38.2%), vision problems (35.0%), depression (34.3%), anxiety (30.4%), sexual dysfunction (28.3%), tremor (18.8%), speech problems (17.1%), and bipolar disorder (2.4%).

2.2 Instrument

The instrument used in the survey was a 98-item questionnaire that included fixed and open response sets. Components of the questionnaire included sections on participant demographics, work history and employment activities, illness-related variables, and 38 employment concerns items (see Rumrill et al., 2015). The 38 employment concerns items were the primary focus of this study. In responding to those items, individuals indicated whether they considered the concern to be important and whether they were satisfied that the concern was being addressed in their communities. For example, in responding to the item regarding health insurance coverage, respondents were asked, “Is it important that people with MS have adequate health insurance coverage?” and “Are you satisfied that people with MS have adequate health insurance coverage?” Other concerns items addressed such issues as access to information on disability benefits programs, discrimination in hiring and retention practices of employers, employment protections under major legislation, the quality of rehabilitation and employment services, access to assistive technology, and support for returning to work and planning for the future.

2.3 Procedure and data analysis

Readers interested in the instrument development, sampling, and data collection procedures used in the larger national survey from which this study’s findings were drawn are referred to Rumrill et al. (2015). Descriptive statistics such as frequencies and percentages were calculated to answer the three research questions. For each of the 38 Employment Concerns items, an Importance rating was calculated as the percentage of respondents who evaluated the item as important. Likewise, each item was also assigned a Satisfaction rating that was calculated as the percentage of respondents who were satisfied with the current status of that item. An employment strength was defined as an item with a high Importance rating (i.e., greater than 60 percent) and a high Satisfaction rating (i.e., greater than 60 percent). An employment weakness was defined as an item with a high Importance rating and a low Satisfaction rating (i.e., less than 60 percent).

3. Results

The first research question addressed the importance ratings that respondents assigned to each item. All 38 items were evaluated as important by at least 69.3% of respondents, and 37 of the 38 items had importance ratings of at least 80 percent. Table 1 lists the 38 employment concerns items in descending order of importance ratings.

Table 1
Employment Concerns Items and Their Importance Ratings (N = 414)

Item	% Important
People with MS …
Are provided the same retirement benefits as other workers.	97.7%
Have adequate information about benefits such as health and disability (short and long-term) insurance.	97.2%
Have access to health insurance when changing jobs or returning to a previous job.	97.2%
Are made aware of employer expectations in the same way as other employees.	97.1%
Have their seniority honored in the same way as other employees.	96.8%
Know what to do if they encounter discrimination at work.	96.3%
Have adequate health insurance coverage.	96.0%
Have the same opportunity for promotion as other workers.	96.0%
Receive the same severance pay as other workers.	95.8%
Are treated fairly in termination or demotion decisions made by their employers.	95.7%
Understand the risks and benefits of disclosing disability status to employers.	95.7%
Are evaluated based on their performance, not on assumptions about MS.	95.7%
Receive the same on-the-job training opportunities as other workers.	95.4%
Are recalled from layoffs in the same manner as other workers.	95.4%
Are encouraged to take control of their lives.	95.4%
Make the decision to quit or retire without being pressured or forced to do so by employers.	95.2%
Have access to adequate information about Social Security programs.	95.1%
Have physical access to workplace facilities.	94.9%
Have access to service providers who understand the needs of people with MS.	94.9%
Are not subjected to harassment or intimidation in the workplace because of their MS.	94.9%
Have their qualifications for employment and advancement fairly evaluated by employers.	94.7%
Are treated fairly by employers in the hiring process.	94.5%
Have the same maternity and family leave options as other workers.	94.4%
Know how to discuss their job accommodation needs with employers.	94.2%
Understand the employment protections of Title I in the Americans with Disabilities Act as Amended (ADA).	93.7%
Can request a review of their accommodation needs without fear of retaliation.	93.6%
Understand the health insurance provisions and protections of the Affordable Care Act (i.e., Obamacare).	93.1%
Can expect employers to respect their privacy regarding health and disability-related information.	92.9%
Are given references from past employers based on work performance, not on disability status.	92.5%
Can expect employers to respond to their accommodation needs in a timely manner.	92.4%
Know their rights regarding job-related physical examinations.	91.9%
Are evaluated no more frequently than other workers.	91.7%
Are considered for other jobs in the same company if their MS prevents them from returning to their former jobs.	91.4%
Have access to assistive technology resources needed for work.	91.1%
Have access to the full range of employment opportunities offered by their employers.	90.2%
Have opportunities for job training or retraining.	88.1%
Are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters.	83.5%
Are expected, by their physicians and significant others, to remain employed after diagnosis.	69.3%

The second research question addressed the perceived strengths in employment policies and practices from the vantage point of people with MS residing in rural areas. Defining a strength as an item with an importance rating of at least 60 percent and a satisfaction rating of at least 60 percent, the researchers identified a total of 13 strengths. Table 2 presents these strength items in descending order of their satisfaction ratings.

Table 2

Employment Strengths (N = 414)

Item	% Satisfied
People with MS …
Are encouraged to take control of their lives.	78.6%
Have the same maternity and family leave options as other workers.	76.1%
Are provided the same retirement benefits as other workers.	75.4%
Are made aware of employer expectations in the same way as other employees.	71.5%
Receive the same severance pay as other workers.	70.4%
Have their seniority honored in the same way as other employees.	68.9%
Receive the same on-the-job training opportunities as other workers.	67.4%
Are given references from past employers based on work performance, not on disability status.	65.9%
Have physical access to workplace facilities.	64.4%
Are expected, by their physicians and significant others, to remain employed after diagnosis.	62.0%
Are evaluated no more frequently than other workers.	61.9%
Have access to adequate information about Social Security programs.	61.0%
Are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters.	60.0%

The third research question addressed the employment concerns with which people with MS residing in rural areas were least satisfied. Defining an employment weakness as an item with an importance rating of at least 60 percent and a satisfaction rating of less than 60 percent, the researchers identified 25 such items. The 25 employment weaknesses are presented in Table 3 in descending order of their satisfaction ratings.

Table 3

Employment Weaknesses (N = 414)

Item	% Satisfied
People with MS …
Can expect employers to respect their privacy regarding health and disability-related information.	59.8%
Are not subjected to harassment or intimidation in the workplace because of their MS.	59.0%
Have opportunities for job training or retraining.	58.3%
Have their qualifications for employment and advancement fairly evaluated by employers.	58.2%
Have access to service providers who understand the needs of people with MS.	57.6%
Have adequate information about benefits such as health and disability (short and long-term) insurance.	57.2%
Are treated fairly by employers in the hiring process.	56.5%
Have access to health insurance when changing jobs or returning to a previous job.	55.6%
Have adequate health insurance coverage.	55.2%
Know their rights regarding job-related physical examinations.	54.7%
Are evaluated based on their performance, not on assumptions about MS.	54.0%
Are treated fairly in termination or demotion decisions made by their employers.	52.9%
Are recalled from layoffs in the same manner as other workers.	52.8%
Have access to assistive technology resources needed for work.	52.5%
Have the same opportunity for promotion as other workers.	52.3%
Make the decision to quit or retire without being pressured or forced to do so by employers.	51.3%
Can expect employers to respond to their accommodation needs in a timely manner.	50.2%
Can request a review of their accommodation needs without fear of retaliation.	48.3%
Have access to the full range of employment opportunities offered by their employers.	48.3%
Know how to discuss their job accommodation needs with employers.	47.8%
Understand the risks and benefits of disclosing disability status to employers.	47.1%
Know what to do if they encounter discrimination at work.	46.0%
Are considered for other jobs in the same company if their MS prevents them from returning to their former jobs.	45.7%
Understand the employment protections of Title I in the Americans with Disabilities Act as Amended (ADA).	44.7%
Understand the health insurance provisions and protections of the Affordable Care Act (i.e., Obamacare).	43.5%

4. Discussion

Perhaps the first observation that should be made about the 38 employment concerns items considered in this study is that all 38 were evaluated as important by at least 69.3 percent of the sample— and 37 of the 38 were evaluated as important by at least 80 percent of respondents. This result may be attributable to the approach to instrument development whereby 13 consumer members of the NMSS and a panel of professionals serving them identified the 38 highest-priority employment issues facing Americans with MS (Rumrill et al., 2015).

Given the fact that all 38 employment concerns were judged to be important, all items in the study were classified as either strengths or weaknesses. With 13 strength items being rated as satisfactory by at least 60 percent of the sample and 25 weakness items being rated as satisfactory by less than 60 percent of respondents, results suggest that rural residents with MS have mixed feelings about their employment situations. The finding that the majority of employment concerns were categorized as employment weaknesses is not surprising in light of the fact that nearly two-thirds of respondents were not employed for pay at the time of the survey. This finding is also consistent with existing research indicating that people with disabilities who live in rural areas face significant barriers to obtaining and maintaining employment (Harley & Cartwright, 2018). Clearly, there is a strong need for improvements in the policies and services designed to help people with MS who reside in rural communities enter, re-enter, or stay in the workforce. Data in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry (Julian et al., 2008) support this recommendation; as in this investigation, less than half of NARCOMS registrants were employed, and people in rural areas were more often unemployed than those in urban or suburban locales.

4.1 Employment strengths

Of the 13 items identified as employment strengths, only two were not specifically work-related. Respondents were highly satisfied with being encouraged to take control of their lives (78.6%) and somewhat satisfied with being expected, by their physicians and significant others, to remain employed after diagnosis (62.0%). Based on these responses, the people who participated in this study seemed generally satisfied with the support shown to them in maintaining their employment status and life choices. This finding is encouraging given that other research has suggested that individuals with disabilities in rural settings are more likely to report being disengaged from the labor market. One potential explanation for the satisfaction that respondents in this study ascribed to the expectations of others is that individuals with MS in rural settings may have been more likely than people with other disabilities to be employed at the time of onset; therefore, they may have developed a connection and level of engagement with the labor market that carry over to the perception of their employment situation post-diagnosis. Strategies for preserving these strengths related to the support and expectations of significant others may include MS support groups, individual and family counseling to address issues related to psychosocial adjustment, referrals to the state-Federal Vocational Rehabilitation (VR) program, and open communication with physicians about issues that arise in the workplace.

Another encouraging theme among the reported strengths was that the majority of rural residents with MS believed that they received equal treatment in the workplace in several areas. Many respondents reported that, in comparison to other workers, people with MS have the same maternity and family leave options (76.1%), are made aware of employer expectations in the same way (71.5%), receive the same severance pay (70.4%), receive the same on-the-job training opportunities (67.4%), have their seniority honored in similar fashion (68.9%), and are evaluated no more frequently (61.9%). These endorsements as employment strengths speak to a perceived equality in benefits, performance evaluation, and opportunities provided by their employers. This perception of fair and equitable treatment may be attributable, in part, to recent advances in civil rights legislation.

Congress implemented the Americans with Disabilities Act Amendments Act (ADAAA) on January 1, 2009 with specific provisions that strengthen the position of people with MS in their efforts to participate in the labor force without being subjected to unfair treatment. 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 implement workplace accommodations (Rubin, Roessler, & Rumrill, 2016). It could be that the general satisfaction expressed in this study regarding equal treatment in the workplace reflects the fact that people with MS are now presumptively protected as people with disabilities under Federal civil rights law.

Even so, research conducted in recent years on the barriers to employment for people with MS continues to indicate that the physical and cognitive symptoms of MS represent major barriers to employment (Simmons, Tribe, & McDonald, 2010) and that the employment barriers for people with MS are far more complicated than a simple relationship between symptoms and work capacity (Moore et al., 2013; Uccelli, Specchia, Battaglia, & Miller, 2009). Undoubtedly, factors in the social and work environment and legal and policy issues still pose challenges that must be addressed if more rural residents with MS are to maintain their employment over time.

It should be emphasized that the strengths reported by respondents in this study pertain to all phases of employment, including acquisition, retention, and decline, ranging from interviewing to retirement. Given the aging workforce in the US and the age at which MS is typically diagnosed, it is not surprising that retirement benefits were viewed as an important employment concern, and it is encouraging that 75.4 percent of respondents were satisfied with the equity of their retirement benefits. In terms of changing jobs, 65.9 percent were satisfied that past employers would give them references based on work performance and not on disability status. Respondents were also satisfied that people with MS are asked interview questions related to job tasks and personal qualifications rather than to health and disability matters (60.0%).

Although the 64.4 percent satisfaction rating for the item related to physical accessibility in the workplace qualifies it as a strength according to the definition used in this study, the fact that more than one-third of respondents were dissatisfied with their physical access to work-related facilities is problematic. This is especially so because the first iteration of the Americans with Disabilities Act has been in effect since 1992 and has required covered employers to provide physical access to the workplace for employees with disabilities for more than a quarter of a century. One possible explanation for this issue is that the infrastructure in rural settings may be lagging due to building and structural age and the lack of resources directed toward community and employment reinvestment. As a result, it is important to engage in advocacy efforts and consultation with and from rehabilitation engineers, ergonomists, and assistive technology specialists that focus on assisting rural residents with MS in their efforts to access the American workplace until this item achieves a unanimous satisfaction rating.

4.2 Employment weaknesses

Underscoring the mixed feelings that respondents reported regarding the employment situation facing Americans with MS is the fact that several items related to fair treatment in the workplace qualify as employment weaknesses on the basis of low satisfaction ratings. Only 59.8 percent of respondents were satisfied that employers respect their privacy regarding health and disability-related information. Other weaknesses related to fair treatment pertained to not being subjected to harassment and intimidation in the workplace (59.0% satisfied), equitable evaluation of employment and advancement qualifications (58.2%), the hiring process (57.5%), and termination and demotion decisions (52.9%).

Another theme apparent in the listing of weaknesses involves health insurance coverage and disability benefits. Items that met the criteria for weaknesses under this theme included having adequate information about benefits such as health and disability (short-and long-term) insurance (57.2% satisfied), having access to health insurance when changing jobs or returning to work (55.6%), having adequate health insurance coverage in general (55.2%), and understanding the provisions of the Affordable Care Act (ACA, 43.5%). The types of employers and specific jobs available in the labor market may be contributing to this finding. Rural employers are more likely than employers in more densely populated locales to hire individuals into low-status manufacturing, production, service, and agricultural positions that pay lower wages, may offer fewer hours, and may not offer health insurance (Strauser, 2014). More research is needed in this area to gain a greater understanding of how rural economic circumstances may be impacting these reported employment weaknesses.

To remedy this study’s most prominent weakness, individuals hired as ACA Navigators and ACA websites must be informative, user-friendly, culturally sensitive, and accessible to people living in rural areas. People with MS, regardless of their residential circumstances, need to know that the ACA (a) requires employers to provide group health insurance coverage for employees who work at least 30 hours per week, (b) prohibits health insurance companies from excluding people from coverage based on pre-existing conditions, and (c) prohibits health insurance companies from imposing annual or lifetime “caps” on coverage (Wickert, Dresden, & Rumrill, 2013).

Outreach, advocacy, and direct service efforts to help people with MS, especially those living in low population-density communities, understand their health insurance options, access quality health care, and receive disability benefits for which they are eligible are an important adjunct to state VR and other employment-related services. Physicians, social workers, nurses, counselors, and rehabilitation professionals alike must be well versed in the provisions of the ACA, the Social Security Act, the Health Insurance Portability and Accountability Act, and private long-term disability insurance — and they must make concerted efforts to ensure that their services and information are accessible to people with MS in all geographic locales and available to individuals and families from diverse and low income backgrounds.

A third major weakness theme has to do with respondents’ understanding of their legal rights. Items reflecting the legal rights theme include knowing their rights regarding job-related physical examinations (54.7%), knowing what to do if they encounter discrimination at work (46.0%), understanding the risks and benefits of disclosing disability status to employers (47.1%), and understanding the employment protections of Title I in the ADAAA (44.7%). Also related to the understanding of work-related rights are items involving requests for workplace accommodations. Only 52.5 percent of respondents were satisfied with their access to assistive technology resources needed for work and only 50.2 percent expected employers to respond to their accommodation needs in a timely manner. Other accommodation-related items with low satisfaction ratings included requesting a review of their accommodation needs without fear of retaliation (48.3%) and knowing how to discuss their job accommodation needs with employers (47.8%). These last two items may suggest that individuals with MS in rural settings have an internalized fear regarding job loss and a self-stigmatizing attitude whereby asking questions regarding needed accommodations implies an admission or concession on their part that they cannot perform the essential functions of their jobs – an admission or concession that is frequently followed by voluntary or involuntary termination of employment (Nissen & Rumrill, 2016).

Rehabilitation professionals working with rural residents with MS need to remind these individuals that they have easier access than ever before to ADAAA protections to guard against retaliation from employers. 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 ADAAA does not obviate the need for the employee with MS to approach the process in a thoughtful and skillful way. It is also important for rehabilitation professionals to provide this information to the individual with a broader cultural awareness of how increased poverty levels and limited job opportunities in rural settings may be contextual factors that negatively affect the individual’s motivation to pursue these options.

Undoubtedly, following a prescribed process for requesting an accommodation or reviewing accommodation options can improve one’s likelihood of implementing workplace accommodations and, thereby, retaining one’s job over time (Roessler & Rumrill, 2015). Helpful advice regarding workplace accommodations is available online from the ADA Centers National Network (https://adata.org) and the Job Accommodation Network (https://askjan.org). Julian et al. (2008) listed a variety of accommodations worthy of consideration by workers with MS 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.

4.3 Limitations

Limitations of this study included the researchers’ reliance on self-report data, the low survey return rate in the larger survey from which this study’s participants were drawn and associated threats to external validity, and the restricted range of responses to the 38 employment concerns items that resulted from the dichotomous (yes/no) scaling of importance and satisfaction ratings. Readers should also note that findings from this study of rural Americans with MS may not generalize to other countries due to international differences in (a) the policies and practices that govern healthcare, human services, and workforce development and (b) population density classifications.

5. Conclusion

The purpose of this article was to describe the highest priority strengths and weaknesses in existing employment policies and services as identified by a national sub-sample of rural residents with MS. A total of 38 employment concerns were considered in this investigation, 13 of which met the criteria for employment strengths and 25 of which were employment weaknesses. Consistent with the mixed distribution of strengths and weaknesses, less than 37 percent of the sample were employed at the time of the survey. Taken together, the low rate of labor force participation and the relatively high number of employment weaknesses identified in this study underscore the need for continued improvements in the employment-related services and supports designed to help rural residents with MS overcome the double “disadvantagement” that is posed by their community circumstances and disability status. By understanding the most prominent employment concerns of people with MS in rural areas pertaining to health insurance, disclosure, accommodation, and discrimination, as well as promoting outreach among health care professionals and engaging in advocacy to improve rural rehabilitation services, rehabilitation professionals can help society capitalize on the talents and expertise of the growing population of people with MS who live in low population-density communities.

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.

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