Thomas Stewart, M.S., J.D., PA-C | As we have written previously, many people with MS will be able to remain in the workforce without significant MS-related limitations for the entirety of their careers. But according to the Social Security Administration (SSA), for all 20-year-olds – whether or not they have been diagnosed with a chronic disease – more than one in four will lose the ability to work prior to retirement age. Thus, it is a good idea for all of us to know how to protect ourselves in the event we lose the ability to work.
The most important safety net for most people who become disabled is Social Security Disability Insurance, which is administered by the SSA, and they’ve recently changed an important rule. The rule has the effect of diminishing the importance of your treating physician’s opinion about your ability to work.
Rather than deferring to your physician’s opinion about your ability to work, the SSA will evaluate the persuasiveness of medical opinions based on the supportability of such opinions in light of the medical record. As a practical matter, this means that what’s recorded in office visit notes, the record made every time you visit a clinician, whether face-to-face or through telehealth, will become especially important. This has important implications for what you report every time you see your physician or other clinician.
What follows are suggestions that will improve your chances of receiving disability benefits if filing a claim ever becomes necessary.
Keep regular appointments with your medical providers
Of course, you need to visit your health care team primarily to get your medical conditions treated. But you should also keep in mind that you may need regular office visits, preferably with an MS specialist, also to support your claim for disability benefits. If you do not seek care for your condition, then SSA may interpret that to mean that your condition does not limit you very much.
This is a potential problem for people who choose not to use the FDA-approved MS medications despite the recommendation of your neurologist. This is fundamentally a bad idea but failing to see an MS specialist may harm you in unanticipated ways, including limiting your ability to prove disability.
This is also a potential problem for people who rely heavily on telephone or email to communicate with their clinicians. Office visit notes, which are among the most important documents for supporting disability claims, are only created when you have an appointment with your provider. In the past, such appointments would have always been face-to-face encounters. Increasingly, office visits will be accomplished virtually, using video cameras. Such office visits are sometimes referred to as telehealth or telemedicine. These visits will certainly be part of your medical record. On the other hand, simply sending emails to or calling your provider may be practical at times, but such emails or phone calls may not be available to support your claim. And even if they are, such records may not be afforded as much weight as if they were included in your office visit notes. That said, if you have had important communications with your health care provider through email, try to make sure that the substance of these communications is included in office visit notes when you follow up with your health care providers for office visits.
Follow up on all recommendations made by your health care providers
Again, following up with your neurologist and his or her recommendations is probably a good idea to stay well and avoid limitations and disability. But it is also important to think about your follow up from another perspective. SSA (and private disability providers) may note your failure to follow up in denying a disability claim. For example, if you are referred for physical therapy, you should follow this recommendation. If you are unable to, for financial reasons or otherwise, be sure to explain this to the referring source, usually your neurologist. It is also probably a good idea to ask your neurologist to record the reason for your inability to follow up in his or her office visit notes.
See appropriate medical providers
If you have MS, see a neurologist. If you have chronic pain, see a pain medicine physician. If you have degenerative disc disease, see a spine specialist. Primary care providers are truly invaluable resources, but ideally you should receive care from an appropriate specialist for any condition that causes you limitations. As always, you should do so to receive the best care possible, not merely to provide support for a potential disability claim!
For mental health problems, it is best if you see (at least once in a while) a psychologist (someone whose credentials include a Psy.D. or Ph.D.) or a psychiatrist (a mental health doctor with an M.D. degree). Therapists, counselors, and social workers can provide excellent treatment, but SSA will generally give more weight to a description of limitations provided by psychiatrists or psychologists.
Tell your health care provider about ALL of your symptoms and limitations
Your neurologist cannot include information about your symptoms and limitations unless you specifically tell her or him about them. If your doctor doesn’t write about your limitations, there will be no record of it. If it isn’t in the medical record, SSA won’t know about it (other than by your self-report, which will probably be insufficient).
Know the difference between symptoms and limitations. Symptoms describe your experience of having an illness. An example is fatigue. If you experience fatigue, it is important that you mention this symptom to your doctor and that she or he puts this into your office visit note.
But this may not be enough. You should also document your limitations. Your limitations are the “so what” of your symptoms. For example, a limitation related to fatigue may be that you need to take a one-hour rest or nap in the middle of the day. You should describe such limitations to your health care provider.
Similarly, remember that what you do tell your doctor will probably be in the medical record. Don’t forget to include any limitations on the way that you do things. For example, if you tell your doctor that you went on a skiing vacation with your family, don’t forget to point out any relevant challenges. For example, point out that you didn’t actually ski and needed to be moved from the parking lot to the ski lodge in a wheelchair.
Create a longitudinal record of your challenges, especially as these relate to your ability to work
Describing your limitations thoroughly and accurately at every visit is possibly the single most important thing you can do to increase the likelihood that a disability claim, if one becomes necessary, will be favorably determined. In particular, you should describe challenges at work that relate to MS. For example, if you find yourself taking rests throughout the day or notice that you are having trouble keeping up with the pace expected of you by your employer, you should note these to your MS care team as soon as you can, even if these problems are still mild or don’t yet threaten your ability to work. This kind of “longitudinal” history, or history over time, is also important and much more convincing to SSA than limitations that appear suddenly in your record on the eve of a disability claim.