Multiple sclerosis in the COVID-19 era: Vocational rehabilitation strategies to meet the needs of a growing and immune-vulnerable clientele

3.1Outreach and eligibility determination

Researchers have noted for decades that people with MS underutilize VR services (Rumrill & Bishop, 2019). The reasons for this phenomenon are many and varied. Medical and health care professionals may give people with MS mixed messages regarding their capacity to enter or continue employment and are often unaware of the availability of VR services. Therefore, education and outreach efforts should target both individuals with MS and their primary care physicians or MS specialists. In particular, physicians and health care providers are in need of accurate information about the benefits of work, assistive technology, reasonable accommodations, and the role of rehabilitation professionals in promoting long-term vocational success (Koch et al., 2012).

Decentralization could also contribute to increasing awareness of and access to VR services. Decentralization requires the stationing of VR counselors in settings where individuals with emerging disabilities such as MS receive health, medical, and social services (e.g., pain clinics, public health agencies, mental health offices and agencies, physicians’ offices, telehealth, MS clinics, and hospitals; Koch & Rumrill, 2017).

If individuals with MS and their physicians and health care providers do not identify MS as a disability, which is a real possibility given that people with MS are often asymptomatic at any given time, they are unlikely to view rehabilitation programs and agencies as potential resources. Therefore, it may be necessary to use language such as “people with chronic health conditions” or “people with MS” in replacement of or in addition to “people with disabilities” in marketing materials, outreach efforts, intake interviews, and eligibility criteria (Fujiura, 2001).

Rehabilitation counselors must often make medical referrals to establish program eligibility, but it is critical that they do some research to identify medical professionals in the community who are most knowledgeable about MS to ensure a comprehensive assessment. Because of the complexities of MS, as well as the fact that it affects each individual in unique ways, diagnosis may be a lengthy process. This can be a very stressful period for individuals with MS who are experiencing distressing yet unexplainable symptoms, may worry about having a life-threatening or life-shortening condition, and are investing substantial time and finances in their search for a diagnosis. Of course, the still ongoing COVID-19 pandemic has profoundly altered the way Americans, especially those with underlying health conditions, approach diagnostic procedures and other healthcare services. Prospective clients who may have MS are likely to be anxious about seeking in-person healthcare services that may place them at high risk of contracting COVID-19.

In preparation for appointments for medical evaluations, individuals with MS should be advised to prepare a comprehensive and detailed medical history that includes information such as symptoms and dates when they first occurred, family medical history, medications, evaluation and test results, tre-atments and their outcomes, and how symptoms interfere with their daily functioning. Keeping a daily record of symptoms, stress levels, their triggers, and how the individual manages symptoms will also help to facilitate appropriate testing and treatment plan development. Complete and thorough documentation is not only important to an eventual diagnosis but is also instrumental in providing supportive counseling and critical to gaining access to public assistance should the need arise.

In eligibility determination, criteria that define disability as a product of the interaction between characteristics of the individual and characteristics of the natural, built, cultural, and social environments should be emphasized. These criteria must (a) de-emphasize definitive medical diagnoses; (b) take into consideration both current and future levels of functioning; (c) include assessment of the applicant’s individual supports, resources, and personal competence and adaptation; and (d) recognize that in the 21st century, social, behavioral, and environmental factors play a far greater role in defining disability than they ever have in the past (Fox & Kim, 2004).

3.2Assessment and planning

Because of the chronic, unpredictable, and often progressive nature of MS that is characterized by vacillating periods of exacerbation and remission, flexibility in sequencing rehabilitation service delivery is necessary so that the assessment phase can be recycled in response to changes and fluctuations in the individual’s health status and functional abilities. Coordination of health care and rehabilitation services across care settings and among multiple providers is also necessary to ensure appropriate and timely rehabilitation plan development.

In identifying employment goals, educating consumers about reasonable accommodations and ass-istive technology will expand their perceived career options. Transferrable skills analyses, particularly for individuals with MS who often acquire their conditions during early- or mid-career, can serve to fur-ther expand perceived options. Likewise, for many individuals with MS, career exploration should focus on occupations that allow employees to maintain flexible work schedules as well as the ability to work from home. This is especially important in the wake of the Coronavirus pandemic. Physical restoration services (e.g., pain management, physical therapy, occupational therapy, medications, mental health treatment, follow-up appointments with medical and health care specialists) are likely to be necessary if individuals are to successfully manage their MS symptoms and fulfill their responsibilities as indicated in the rehabilitation plan. Psychological support services to (a) deal with the stress of coping with an unpredictable and progressive illness, (b) facilitate development of illness management and coping skills and generalization of these skills to employment settings and job tasks, and (c) treat secondary mental health conditions may be necessary as well.

Another important component of the assessment and planning process is referring individuals with MS to patient advocacy and self-help websites and support groups. These resources are invaluable in linking VR consumers with appropriate community resources and equipping them with accurate information about their MS and how to effectively manage symptoms and health fluctuations. Connecting with others who have the same diagnoses or symptoms can counteract feelings of alienation and isolation. The NMSS maintains a website with information about local support groups, on-line support groups, and other resources.

Finally, because MS is on the rise in populations of African-American and Latinx ethnicities, populations that have historically been underserved by VR programs, both traditional and nontraditional partners (e.g., MS advocates, local business owners, community leaders, spiritual and religious leaders) should be involved in efforts at both micro and macro levels to design and deliver effective interventions that will lead to improved employment outcomes and enhanced quality of life for people with MS who are from these populations.

3.3Counseling and guidance

Smart (2009) indicated that the ambiguity of disability often creates a sense of discomfort among others because of a fear of the unknown and an in-ability to understand the appropriate social dynamic or way of interacting with the person. This ambiguity may be intensified for people with MS given the unpredictable and variable nature of the disease process. Furthermore, people (including rehabilitation counselors) may have the tendency to ascribe negative attributes or greater limitations to people with disabilities that are ambiguous. The ambiguity of MS can be further heightened by the fact that MS symptoms are often invisible. People tend to doubt the nature of a person’s disability when the effects of the disability are not readily apparent, and when his or her level of functioning varies overtime and the person can participate in certain activities and complete specific tasks one day and not the next. These negative judgments from others can have a negative impact on individuals’ self-concepts, and consumers can also begin to incorporate some of these beliefs into their own self-identities (Koch & Rumrill, 2017).

Although counseling may be beneficial for individuals trying to cope with the many, varied, and complex emotions that arise with the diagnosis of MS and disease progression, some individuals may be reluctant to seek out rehabilitation counseling or mental health services. They may come from a cultural background that discourages individuals from sharing their problems with anyone outside of their family (Smart, 2020). Some may be reluctant to seek support because it puts them in a position of perceived helplessness. When discussing the possibility of counseling, rehabilitation counselors need to provide information that can reassure these consumers that their range of emotional responses are “normal” for their circumstances and commonly experienced by others coping with medical uncertainties (Smart, 2009). Many people with chronic health conditions do not realize that others are going through similar responses and challenges. Counseling and guidance provided by rehabilitation counselors should focus on: (a) adjustment to disability issues; (b) coping with lack of support or understanding from others; (c) dealing with declines in functional abilities and the loss of self-esteem that may accompany these declines; (d) managing chronic daily stressors associated with MS, (e) grief issues, (f) avoiding helplessness, hopelessness, and victimization; (g) impact of illness on interpersonal relationships, and (h) employment issues.

Without appropriate professional or social support, many people with MS could be at risk of social withdrawal, which can further exacerbate the symptoms of their chronic health conditions. Rehabilitation counselors must also bear in mind that social isolation and loneliness have taken on new and enhanced meaning in light of the social distancing requirements that have been necessitated by the COVID-19 pandemic.

Indeed, because pandemics, natural disasters, and extreme weather events are becoming the “new nor-mal” in the 21st century, rehabilitation counselors must keep in mind that individuals with MS are a high-risk group for developing severe, life-thr-eatening symptoms of illnesses such as COVID-19. It is imperative under these circumstances that rehabilitation counselors conduct regular check-ins or involve other agencies in doing so to ensure that clients’ basic needs for survival are being met (i.e., access to medications, food, cooling, heating, safe housing). In events such as the COVID-19 pandemic, individuals with MS may be at risk of serious co-morbid illnesses or even death if exposed to this highly contagious disease. Thus, they must quarantine until the health crisis remits, and, as we are currently experiencing, the period of quarantine can last for months. Isolation from family and friends for those who live alone could contribute to symptoms of depression, and the potential of exposure to the virus if living with family members could increase individuals’ anxiety and fears of death. For all individuals, anxieties surround the uncertainty of the COVID-19 pandemic in terms of how long it will last, when a vaccination for the virus will be developed and made available to the general public, and when it is safe to resume normal life activities. These anxieties are likely to be even greater for those with chronic illnesses such as MS. Follow-along counseling services are highly recommended to provide individuals who live alone a source of connection and support that may be desperately needed. Likewise, it is important to ensure that those living with family members are staying mentally and physically healthy as well as practicing social distancing and other recommendations from the Centers for Disease Control and Prevention (CDC) to reduce the risk of contracting COVID-19.

With the use of telemedicine techniques and modern digital conferencing technology, rehabilitation counselors and at-risk clients such as those with MS can jointly determine how often and when to connect with each other and whom to contact in times of crisis. In the wake of COVID-19, the extent to which people with MS have access to adequate technology and Internet capacity to facilitate virtual contacts with friends, employers, significant others, and service providers is an important consideration. If they have appropriate technology, individuals with MS should be encouraged to reach out to their natural supports and to join on-line communities to reduce their sense of isolation. The NMSS website is an invaluable resource that offers virtual support groups 24 hours a day, 7 days a week; volunteers to provide one-on-one support if that is preferred over virtual support groups; and podcasts such as Coping with Uncertainty to support individuals in staying mentally and physically healthy during this or future public health crises.

In addition to recommending these resources, rehabilitation counselors may need to assist individuals with identifying other resources in their local communities such as grocery and medication delivery services. Referrals for community mental health services may be needed if individuals are displaying symptoms such as hopelessness, loss of pleasure, failure to take their medications as prescribed, insomnia, hypersomnia, or suicidal ideation.

3.4Job development, placement, and retention

Primarily because of the wide range of symptoms and the unpredictable nature of the disease, MS is accompanied by a severe decline in labor force participation. Although 98% of people with MS have employment histories and 82% were still working at the time of diagnosis (Roessler, Rumrill, Li, & Leslie, 2015), the vast majority of workers with MS prematurely exit from the workforce before retirement age. Schiavolin et al. (2013) found that 59% of adults with MS worldwide were unemployed. In a study of people with MS in the United States, Roessler et al. (2015) reported an identical jobless figure, although 98% of the sample were high school graduates and 46% were college graduates.

Among people with MS who are unemployed, 75% left their jobs voluntarily (Roessler, Rumrill, & Hennessey, 2002), 80% believe that they retain the ability to work (Nissen & Rumrill, 2016), and 75% say that they would like to re-enter the workforce (Rumrill, 2006). The choice to leave the workforce is often influenced by physicians and family members who believe that stopping work is in the best interest of the individual with MS.

Reactions on the part of employers and co-workers also shape the choice whether to continue or discontinue employment following a diagnosis of MS. Sweetland et al. (2007) surveyed people with MS who were employed or attending educational institutions and found that discrimination and how to respond to it were among their most important concerns. Primarily, respondents were concerned that employers lacked awareness of and sensitivity to the needs of people with MS, especially regarding the implementation of workplace accommodations.

More recently, a national survey of 1,924 Americans with MS conducted by Rumrill et al. (2015) corroborated that people with MS are often dissatisfied with the employment protections set forth for them in Title I of the ADA. Areas of particular dissatisfaction included (a) knowing how to discuss their job accommodation needs with employers (53.4% dissatisfied); (b) requesting a review of their accommodation needs without fear of retaliation (52.7% dissatisfied); (c) understanding the employment protections of Title I of the ADA (51.7% dissatisfied); (d) understanding the benefits of disclosing disability status to employers (50.6% dissatisfied); (e) knowing what to do if they encounter discrimination at work (49.4% dissatisfied); and (f) expecting employers to respond to their accommodation needs in a timely manner (47.9% dissatisfied). These studies identify areas that should be prioritized by rehabilitation counselors in providing employment and job retention services to individuals with MS.

A preliminary step to VR planning is to explore quality of life issues with individuals with MS because these can have a major bearing on their willingness and capacity to work. The symptoms of MS (e.g., chronic pain, cognitive impairment, sleep problems, fatigue) may be so severe for some individuals that employment may not be feasible. If they do work, their ability to carry out activities of daily living may be severely compromised. Likewise, they may have no energy left after work or on weekends to socialize with family and friends or to participate in leisure activities that they enjoy. In these instances, quality of life may be seriously compromised. It may be pertinent in such cases to explore options such as part-time employment or, if employment is deemed to be infeasible, options such as applying for long-term disability benefits offered by employers or Social Security Disability Insurance. For others, the psychosocial benefits of employment (e.g., sense of purpose, increased feelings of self-worth, structure to one’s day, opportunities for socialization) can improve both their functionality and their quality of life. Thus, consultation to weigh the pitfalls and benefits of employment is crucial to making informed decisions about working.

The next step in VR planning with people with MS is to assess their understanding of employment provisions for people with disabilities covered by various laws and statutes (e.g., ADA, Family and Medical Leave Act; Strauser et al., 2019). However, even when equipped with this knowledge, individuals with MS may be hesitant to invoke their rights because of prior unsuccessful experiences with attempting to do so. It has been well documented that employer responses to disclosure of disability and requests for worksite accommodations from these individuals are often negative, ranging from denial of the request to outright hostility and harassment. In research conducted by Reed et al. (2017) with 8 focus groups totaling 74 individuals with MS, participants responded to two questions about disclosure (a) “Did you decide to tell your employer about your MS? and (b) If so, how did it impact either finding or maintaining employment?” In the category of Decision to Disclose, themes included (a) disclosing to explain, prepare, or educate; (b) general disclosure, no concerns; (c) limiting, delaying, or deciding not to disclose; and (d) unsure about future disclosure. Within Consequences of Disclosure, themes included (a) positive and supportive reactions, (b) mixed or variable reaction in the same work environment, (c) no real reaction, positive or negative, and (d) leading to termination of employment. Other researchers have upheld these findings with samples of individuals with hidden disabilities and chronic illnesses (e.g., Koch et al., 2020; Manno et al., 2020). Findings from these studies indicate that, while traditional approaches to job placement and accommodation planning target areas of concern, and disability disclosure is required to received reasonable accommodations, many choose not to disclose and those who do disclose are not always successful in getting their needs met.

Rehabilitation counselors have an obligation to listen to and validate anxieties and concerns expressed by individuals with MS and help them to weigh the risks and benefits of disclosure. Individuals with MS may benefit from specific information and assistance regarding disability disclosure, requesting reasonable accommodations, documenting their disability status, and making formal complaints of employer discrimination if and when it occurs. The emphasis of all ADA-related training should focus on helping people to invoke their legal rights to non-discriminatory treatment in the workplace while maintaining non-adversarial relationships with employers and co-workers, a task that may be difficult to achieve. Rehabilitation counselors may also need to educate employers about appropriate responses to accommodation requests and how to ensure that employees with MS are treated no differently by co-workers because they receive reasonable accommodations. Complicated issues related to disclosure of disability, accommodation requests, workplace climate, and co-worker relationships will need to be explored in-depth and revisited throughout the job search and employment retention process.

After exploring and addressing the concerns of individuals with MS about disclosure, assistance to these job applicants or employees and their employers will often be needed in implementing reasonable accommodations so that individuals with MS can be successful in their positions. The process of identifying appropriate workplace accommodations is complicated by the unpredictable nature of MS and the need for some employees with MS to periodically take time off from work to receive in-patient and out-patient medical services. The job placement specialist is uniquely positioned to guide the employee and employer in addressing concerns such as job performance, reactions of co-workers, absenteeism, and reasonable accommodations. Employers also may need to be educated about the low cost and ease of most accommodations (e.g., flex-time, flex-place, telecommuting, mentors, natural supports) for workers with MS. The Job Accommodation Network (JAN, 2019) and the ADA National Network (visit https://adata.org/) are useful resources for exploring possible accommodations for individuals with MS. However, before recommending specific accommodations, it is imperative to begin the accommodation planning process by discussing with individuals with MS the coping strategies and accommodations they have successfully used in their daily lives, school, prior employment, and current jobs because many of these can easily be translated into on-the-job accommodations to manage their current needs.

The high rate of disengagement from the workforce after the onset of MS underscores the need to prioritize job retention services and follow along supports beyond 90 days after initial placement. It is strongly encouraged that VR agencies employ job retention specialists to provide needed employment supports as individuals’ functional limitations change over time. These services should be provided in a proactive manner and start as soon as the individual begins employment. Providing services in a preventative, early intervention context can reduce the likelihood of premature departure from the workforce and preclude the negative consequences of unemployment (e.g., financial difficulties, psychological distress, worsening of symptoms, secondary health problems; Strauser, 2014). Indeed, VR agencies across the nation are increasingly developing programming to focus on the job retention needs of their clients. Job retention specialists will also want to collaborate with the employee with MS to regularly monitor changes in her or his health status, performance of job tasks, and consequent accommodation needs. Immediate changes to the work environment through proactive accommodation planning can enable individuals to continue working for indefinite periods of time.

Finally, VR counselors should be knowledgeable about the various job retention supports that are being implemented by large businesses so that they can take advantage of these. Fortune 500 companies and Federal contractors are designing a variety of innovative strategies to retain employees with disabilities. Rehabilitation counselors can recommend these strategies to employers of individuals with MS in work settings in which these are not being implemented. Examples of such strategies include on-boarding, resource groups comprised of employees with disabilities and other members of the work environment, and career development opportunities (Iyer& Masling, 2016).

Employee on-boarding programs provide new em-ployees with the tools and resources needed to be successful in their new workplace. Typical on-boarding programs acclimate employees to the workplace culture and educate them about relevant policies and procedures. The objective of on-boarding programs for new employees with disabilities is the same as it is for all employees. However, on-boarding for employees with disabilities also includes disability specific information such as procedures for acquiring reasonable accommodations and the provision of all employee orientation materials in accessible formats (Iyer & Masling, 2016). Well-designed employee on-boarding programs improve employee retention and increase productivity for all employees.

Employee resource groups (ERGs) for people with MS and other disabilities provide opportunities for employees to share concerns and receive support from those who share similar backgrounds, experiences, or interests (Iyer & Masling, 2016). ERGs are generally started by employees with disabilities but are most effective when senior management is involved and an executive sponsor or Champion is assigned to lend support to the ERG. Senior management participation is also good for business because it enables top-level executives to better understand their workforce, create more inclusive workplaces, increase retention and productivity, and link the ERG’s mission to specific business goals. These executives can also secure diverse perspectives for product development and marketing. Disability ERGs may share information on appropriate disability etiquette; assist in promoting physical and virtual accessibility; offer guidance and insight on the types, costs, and availability of accommodations; and dispel myths and misconceptions about the abilities and talents of persons with disabilities. They may also offer mentoring for newly hired or recently diagnosed employees with disabilities. Lastly, they may serve as built-in focus groups for developing and testing new products and services designed for customers with disabilities.

Ensuring that employees with MS have equal access to career development opportunities is also an important initiative at Fortune 500 companies (Iyer & Masling, 2016). Conferences, training workshops, tuition assistance, and rotational work assignments are proven employee retention strategies. To guarantee equal access to these programs for employees with MS and other disabilities, supervisors must be held accountable by management for implementing practices that support disability diversity, ensuring that all online professional development classes and materials are fully accessible, reserving part of continuing education funds to provide disability-related accommodations for participating in career development opportunities, providing specialized leadership programs for employees with disabilities, and ensuring that all workplace career development events are made accessible to employees with disabilities. It is also important to ensure that all career development programming is compatible with social distancing requirements and modern technology in light of the Coronavirus pandemic.