The diagnosis of multiple sclerosis (MS) or other neuroinflammatory disorders is not, in and of itself, a reason to stop working, nor is there immediate need to advise one’s employer of the diagnosis. Many patients with MS and related disorders continue to work gainfully. Furthermore, there are many financial and social reasons to maintain work as long as possible.1, 2 While this document will focus on MS, these recommendations apply broadly to other disorders such as neuromyelitis optica spectrum disorder, myelin oligodendrocyte glycoprotein antibody associated disease, etc.

How can clinicians support a patient who is having trouble working?

When individuals develop symptoms that interfere with their ability to perform some aspect of their job duties, it is important to review the situation and determine what accommodations would allow them to continue working. Effective symptom management strategies are available with medication and rehabilitative interventions to continue working. At our center, physicians and advanced practice practitioners (APPs) work together with physical, occupational, and speech therapists, rehabilitation medicine specialists, clinical psychologists, neuropsychologists, and social workers to develop a multidisciplinary treatment plan to address both work accommodations and symptom management.3 In our experience, early discussions on work-related challenges facilitate referrals to these team members while providing opportunities to troubleshoot specific challenges patients may be facing.

Patients may advise their employer of the specific symptom impacting their job or their diagnosis, depending on their comfort level with their employer.4-6 We advocate that patients when having such discussions with their employer first to review their job successes and then describe their challenges, and suggest potential job accommodations. When individuals are able to maintain key elements of their job, reasonable accommodation is required by the Americans with Disabilities Act (The Americans with Disabilities Act | ADA.gov). If the needed accommodations are expensive or require modifications to the work site, a referral to the state bureau of vocational rehabilitation (BVR) should be considered. This state agency is charged with helping individuals with disabilities maintain current employment or be retrained for other jobs. The Ohio BVR is accessed at https://ood.ohio.gov/

What resources are available if a person is unable to work for a brief period?

If a person is experiencing new symptoms or recovering from an exacerbation, they may need to be away from work for a period of days to weeks. Workers with short-term disability insurance may have income protection for some part of their medical leave. Individuals who work for public or private employers with 50 or more employees can apply for Family and Medical Leave Act approval through their employer. The Family and Medical Leave Act (FMLA) provides eligible employees (along with family members/care givers) up to 12 weeks of unpaid leave per year and requires maintenance of group health benefits during the leave. Employees are also entitled to return to the same or an equivalent job at the end of their FMLA leave. This is an important benefit for individuals recovering from a relapse or in need of time away from work for medical and rehabilitative appointments. If FMLA is unavailable, patients should inquire about short-term disability benefits through the organization/company. When patients apply for FMLA they do not need to disclose their diagnosis, but they do need to advise their leave is due to an FMLA-protected condition. Clinicians do need to include a reason for the FMLA leave on the application and the phrase “life long neurological condition” is common terminology we employ. https://www.dol.gov/sites/dolgov/files/WHD/legacy/files/employeeguide.pdf

How do long term disability programs work?

The most common type of disability insurance for workers in the United States is Social Security Disability Insurance (SSDI). SSDI is a federally funded insurance program for people who become totally disabled. The Social Security definition of total disability requires that a person is unable to engage in any substantial gainful activity (SGA) because of a medically determined physical or mental impairment that is expected to last for at least 12 continuous months. Cognitive impairment and psychological disorders are included in this definition (https://www.ssa.gov/redbook/eng/definedisability.htm). While a claim cannot be solely based on fatigue alone, documenting its interference with activities of daily living and its limitations on physical activity can be helpful.

Substantial gainful activity is defined as earnings of more than $1,550 a month as of 2024. SSDI benefits begin 6 months after a person has been determined to be disabled. During the 5-month wait period, a person’s pre-tax earnings cannot exceed the SGA amount. Eligibility for SSDI is based on “work credits” that are earned by gainful employment and federal income tax payments. In 2024, a person needs to earn $1,730 per quarter to get one Social Security credit and $6,920 to get the maximum four credits for the year. Individuals 30 years or older must earn 20 credits within 10 years of becoming disabled. Younger workers can qualify with fewer credits. SSDI does not replace previous earnings. Rather, it covers approximately 40% of the most recent earnings.

(https://www.ssa.gov/benefits/retirement/planner/credits.html#h3). The average monthly SSDI payment in 2021 was $1,492.(https://www.ssa.gov/policy/docs/statcomps/di_asr/2021/sect01.htm)

SSDI also includes access to Medicare, but that coverage becomes available 24 months after the disability benefits begin. This lapse in health insurance coverage is a critical issue for people with chronic illnesses. Three common options for obtaining short term health insurance coverage include: (1) Coverage through the employment-based insurance policy of a spouse or domestic partner; (2) Purchase of a policy through the Health Insurance Marketplace of the Affordable Care Act (HealthCare.gov); (3) Applying for Medicaid. A fourth, more personally expensive option may be provided under the employee’s former employer ‘s insurance plan and is available through the Consolidated Omnibus Budget Reconciliation Act (COBRA) for former employees and their families and is typically available for 18-months, but can be extended to 36 months in some cases. Qualified individuals may be required to pay the entire premium for coverage up to 102% of the cost to the plan (https://www.dol.gov/general/topic/health-plans/cobra)

People who work for state, county, and municipal agencies are covered either by SSDI or a state-funded pension plan. The state-funded plans differ in their eligibility requirements and the benefits they provide. In addition to these governmental disability benefits, some workers are provided or can purchase supplemental private short term and/or additional long-term disability insurance through their employer or, less likely, privately. The health insurance options are the same as those listed for people receiving SSDI.

Individuals with no work history who meet the SSDI disability criteria are eligible for a low-income benefit called Supplemental Security Income (SSI). SSI is a federally funded income program administered by individual states for those who are disabled according to the Social Security criteria but do not meet the work-based criteria for SSDI. The maximum SSI payment in 2023 was $943.00. Those who receive SSI should also apply for Medicaid health insurance and other benefits offered by the state where they live. Federal/state employees have their own disability process. These applications are different than the SSDI application but beyond the scope of this article and would recommend formal social work involvement to help navigate that process.

How can clinicians support patients in the disability process?

It is important for clinicians to (1) provide education/resources regarding the process for obtaining work related accommodations and/or filing for disability benefits, (2) identify and treat the factors contributing to work-related difficulties, and (3) provide the necessary documentation to support their patient’s goals.

Clinicians should consider how symptoms influence a person’s ability to perform their most important roles and responsibilities.3 Clinicians and patients should have an ongoing discussion about how symptoms affect the patient’s work and how accommodations could allow the patient to continue to work. For example, notes to the employer to recommend accommodations for distance to walk to an office, breaks, air conditioning or heating, parking, ramps, etc., may be helpful. If the patient is still unable to perform their necessary responsibilities despite these accommodations, it may be appropriate to consider alternate types of employment.

When patients indicate that they are considering the need to apply for permanent disability, it is important for the health care team to provide education, support, and documentation regarding their application and a referral to social work to guide them through the process. It is important to clarify to the patient that the clinician does not determine if a patient is disabled. This is adjudicated by the disability judge which will grant the disability status, not the clinician. The clinician’s role consists of:

  1. Discuss work related issues in a timely fashion with patients when clinicians observe marked decline on measures of functional status. At our center, theMultiple Sclerosis Performance Test and the Quality of Life in Neurological Disorders (Neuro-QoL) are useful tools for assessing a patient’s abilities. See below for some specific language to be included in the documentation.
  2. Social work consultation is recommended early on to help patients and families consider the impact of a decision to either continue working, reduce to part-time work status or pursue disability in the context of their personal identity, family/work balance, and financial consequences among other psychosocial factors. Social workers also provide general guidance to patients about disclosing their diagnosis and limitations to an employer, and realistic expectations around the disability application. If available, consultation to health psychology can also provide support to patients and/or caregivers.
  3. Documenting disease information in the record that supports an ongoing disease process that may, in time, lead to disability. Examples include:
    1. Specifically documenting relevant symptoms and how they create challenges in the workplace (fatigue, cognitive function)
    2. Persistent sustained disability
  4. Specific referrals based on clinical judgment, may be helpful in the disability process based on patients’ symptoms. These referrals are not required for all patients can be helpful to document objective evidence of impairment, which may be particularly useful when. fatigue or cognitive impairment is a major source of disability.
    1. Functional capacity evaluation with physical therapy or occupational therapy. This evaluation is about 3 hours in length, consists of various mobility performance tests looking at strength, vision, transfers, and walking and stair ability. Patient reported outcomes measures are collected during this evaluation including fatigue metrics
    2. Ophthalmology evaluation for visual dysfunction
    3. Neuropsychological evaluation to provide a detailed characterization of the patient’s cognitive abilities.
    4. Psychiatric evaluation for depression or other psychiatric disorders
    5. Pain management evaluation for pain limiting function.

When is it time to consider permanent disability?

Disability occurs when the patient is no longer able to work, rather than occurring at any specific disease duration or disease severity. The Social Security Administration outlines specific criteria for disability associated with MS which can be found in the Social Security Bluebook. These criteria include the following:

I. Significant and persistent disorganization of motor function (paresis, paralysis, tremor, other involuntary movements, ataxia, and/or sensory disturbances) in two extremities, resulting in sustained disturbance of gross and dexterous movements, or gait and station.

OR

II. Marked limitation in physical functioning and in at least one of the following.

  • Understanding, remembering, or applying information
  • Interacting with others
  • Concentrating, persisting, or maintaining pace
  • Adapting and managing oneself

In the absence of marked physical limitation, patients may be considered disabled due to mental impairment alone. This includes neurocognitive and/or psychological disorders (e.g., depression, anxiety, bipolar disorder, etc.). Criteria for this includes:

  • Extreme limitation in one or marked limitation in two of the following:
    • Understanding, remembering, or applying information
    • Interacting with others
    • Concentrating, persisting, or maintaining pace
    • Adapting and managing oneself

 AND

  • A significant decline (compared to prior) in cognitive function for neurocognitive disorders or symptoms sufficient to warrant the specified psychiatric condition.

What if a person’s SSDI application is denied?

At any time during the application process, if a person receives a denial notice it is essential that they follow instructions on that notice about how to appeal the denial. Failure to do so may result in the applicant having to restart the application process.

Individuals applying for disability often ask if they need a lawyer. In the case of SSDI, a lawyer can have very limited influence on a disability determination until they have been denied twice but can be helpful to provide guidance navigating the process. The next level of review is with an adjutant law judge and a lawyer can be helpful in preparing and representing a person at this review. The National Multiple Sclerosis Society has detailed information about applying for disability and appealing a denial (https://www.nationalmssociety.org/Resources-Support).

References

  1. Dorstyn DS, Roberts RM, Murphy G, Haub R. Employment and multiple sclerosis: A meta-analytic review of psychological correlates. Journal of health psychology. Jan 2019;24(1):38-51. doi:10.1177/1359105317691587
  2. Rumrill PD, Roessler RT, Li J, Daly K, Leslie M. The employment concerns of Americans with multiple sclerosis: Perspectives from a national sample. Work. 2015;52(4):735-48. doi:10.3233/wor-152201
  3. Bishop M, Rumrill PD. Multiple sclerosis: Etiology, symptoms, incidence and prevalence, and implications for community living and employment. Work. 2015;52(4):725-34. doi:10.3233/wor-152200
  4. Dervish J, Arfuch VM, Murley C, et al. Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin-insights from a Swedish population-based survey. Frontiers in public health. 2024;12:1331746. doi :https://dx.doi.org/10.3389/fpubh.2024.1331746
  5. Dong S, Mamboleo G. Factors associated with requesting accommodations among people with multiple sclerosis. Work (Reading, Mass). 2022;71(4):1051-1061. doi :https://dx.doi.org/10.3233/WOR-205059
  6. Lehmann AI, Rodgers S, Kamm CP, et al. Factors associated with employment and expected work retention among persons with multiple sclerosis: findings of a cross-sectional citizen science study. J Neurol. 2020;267(10):3069-3082. doi: https://dx.doi.org/10.1007/s00415-020-09973-3