Many people with MS will never become disabled, especially those who receive proper treatment. However, the fact remains: some people with MS will develop symptoms that begin to interfere with workplace demands.
Some laws, such as the Family Medical Leave Act (FMLA) or the Americans with Disabilities Act (ADA), may help by providing protected time off or reasonable accommodations. But unfortunately, sometimes these laws are only helpful for a time. For some, MS continues to progress, and additional absences and workplace accommodations cannot mitigate the effects of symptoms such as fatigue and cognitive problems. Some become unable to work on a full-time basis or maintain the pace and attention required in their jobs.
Some will see the writing on the wall; that is, they will see signs that their continued employment is in jeopardy. They may receive a negative formal review, be placed on a performance improvement plan, or receive negative informal feedback from supervisors or peers for the first time in their careers. They may notice other, more subtle clues, such as having responsibilities and opportunities shifted to other employees; or they may notice on their own that they have lost the ability to perform their work at the expected level.
Ideally, these employees will then discuss the problem with their neurologist, and, if available, seek private disability benefits offered by their employer by providing notice of their disability prior to becoming fired. This is generally the best-case scenario, assuming that the private disability claim is favorably determined. Disabled employees generally receive a replacement income, usually 50 to 60 percent of their salaries. Those who can adjust to other work can have an income while seeking a less demanding job. More often, especially for those with severe fatigue and cognitive problems that prevent all work, this income can potentially (see reference 1) protect the employee with this level of income up to age 65. While this can be emotionally and financially challenging, the outcome could be much worse.
The worse scenario is that someone gets fired due to poor performance, but never connects getting fired to their MS symptoms. Some may move on to lower paying work after a period of unemployment. Others may never return to work and wind up applying for Social Security Disability Insurance (SSDI) benefits later, but often the SSDI benefit is for much less money. Moreover, SSDI benefits are more difficult to access due to a slower process and a stricter definition of disability. But in these cases, disabled employees miss out on a critical part of their financial safety net, private disability benefits, that they may have been paying for, possibly for many years.
This happens surprisingly often. The reasons for this vary. I met Chris D. as a patient in clinic. He described to me having been fired nine months earlier. He was angry at his employer who required work in excess of 40 hours per week in a cognitively demanding setting. I asked him whether MS symptoms, such as fatigue or cognitive problems, might have contributed to performance problems that ultimately got him fired. Initially, he said no. But then he began to describe some difficulty keeping up with his work. He essentially had to work all the time, not only while at work, but at home too. And that he had made a few mistakes.
After further reflection, he began to understand that his MS symptoms were having a significant impact on his work. I referred him for neuropsychological testing and indeed, some areas of cognitive impairment were identified. After this cognitive testing, Chris now readily sees that he has trouble with memory and with multitasking, and that these affected his job performance.
Chris applied for disability benefits almost a year after he lost his job. His claim is currently being evaluated. But due to the terms of his particular policy, even if he is found disabled, he will receive a benefit that is 30 percent less than it would have been if he had applied earlier.
I asked Chris to help with this article and explain why it was hard for him to see that his MS symptoms had interfered with his work. He thinks that the problem for him was a lack of humility. His response to harsh criticism from his employer, understandably, was anger. However, he wishes that he had reached out to others, people with MS and his medical team, at that point. Someone might have been able to help him reflect on the possibility that his MS symptoms, through no fault of his own, were interfering his work. But due to a hard work ethic, and “stubborn independence,” he did not see this, and was determined to succeed at his work despite his limitations.
Sue (not her real name) has a similar story. I met Sue when she called me seeking help in her claim for Social Security Disability benefits.
Similarly, she lost her executive job about eight months prior to our meeting. She too hadn’t applied for private disability benefits because she hadn’t connected her MS symptoms and limitations to her performance at that time. Similarly, she relates this failure to pride.
Sue had always been a high performer. She received two weeks’ notice in a written document. She states that it might have helped to have a professional, a lawyer, review it with her, but again, she noted that due to pride in her own ability, she did not bother to do so.
In addition, like Chris, Sue wishes she had reached out to others, including her clinicians and her therapist, as soon as she saw the writing on the wall. She thinks someone with an objective point of view might have helped her to connect her work challenges to her MS symptoms.
The good news is that Sue wound up receiving benefits, but only after a three-year process that culminated in federal court. While she was grateful to her lawyers, it’s possible that she might have been able to avoid significant legal fees, delays, and frustrations, had she applied for disability benefits right away.
Most disability policies have deadlines for applying. For example, a recently reviewed Cigna policy stated, “notice must be given within 31 days after a covered loss occurs or begins, or as soon thereafter as reasonably possible.” Sometimes missing a deadline for filing can prevent benefits. However, even when a deadline is missed, arguments can be made.
One such argument, available in many states, is the “notice prejudice rule,” which means that an insurance company cannot deny a claim solely based on the fact that someone filed late. The late filing must also have “prejudiced” the insurance company. In other words, the late filing must have made it difficult to for the insurance company to evaluate the facts at the time the employee was working.
Even in states where the notice-prejudice rule is available, it might not be available in every case. According to federal law, the rule will not protect employees of self-insured plans.
The point is: Don’t apply late, if possible. But applying late is better than not applying at all.
Consider the following if you have MS:
- If you are working and sense that your job is in jeopardy, consider whether the protections afforded by the FMLA and the ADA can help. These laws can sometimes provide additional days off or other accommodations that may allow you to continue in the workforce, at least for a time. Discuss the possibilities with your clinicians, friends and family. Discuss the possibilities with your employer too. (For more information about the FMLA and ADA, please see recent articles in our Summer and Fall 2019 issues of InforMS, available online at MSCenter.org/informs.)
- If you sense that your job is in jeopardy and that you cannot realistically stay in the work force, despite the ADA and FMLA, find out whether you have private disability benefits available to you. Get a copy of your plan summary and review it.
- If you have private disability insurance, consider seeing your neurologist to find out if he or she will support your disability claim. If so, notify your employer while you are working, that, based on a conversation with your doctor, you would like to apply for disability benefits. If not, consider finding other treating sources who are inclined to support your claim, such as your primary care physician. It may be difficult to prove to an insurance company that you area disabled without the support of a treating clinician. But you may need to find that support after you notify your employer of your intent to file for disability. And, as described above, depending on the specifics of your policy, you may provide notice of your claim for disability benefits even after you stop working.
- If you get fired and you have MS, reflect very carefully on whether there was a problem with your performance. Anger, pride and a strong work ethic may limit your ability to see the connection. Discuss this with your health care team and friends and family. Perhaps cognitive testing (a neuropsychological evaluation) or other tests may help to clarify this. Indeed, some kinds of MS related cognitive problems (executive dysfunction), may inhibit your insight and judgment about whether you had any MS related performance problems. If you believe that there is a connection, apply as soon as possible, even if that is after the deadline described in your policy. Especially if you are filing a late claim, consider seeking an expert consultation, a lawyer experienced with disability claims.
If you do not have private disability benefits and can no longer work, there is a chance that you will be protected by Social Security Disability Insurance. Consult an expert to learn about the process as soon as possible.
Thomas Stewart directs the RMMSC’s Disability Law Program. For a free consultation, please contact RMMSC’s Disability Law Clinic at (720) 301-9708.
1. Employer provided disability benefits are variable. Many provide two years coverage for employees who become unable to do their own occupation; but will pay benefits up until age 65 for those employees who cannot return to any occupation that pays 60% of their prior salary. (Often there are exceptions for psychiatric conditions.) It is essential to learn about the particulars of your disability policy.