Life with MS

According to the Social Security Administration, MS is the third most common neurological cause of disability, behind only stroke and epilepsy. Qualifying to receive Social Security Disability Insurance benefits can help by ensuring an income stream and medical insurance. Yet of those who apply for disability benefits, only 37 percent nationally are successful on their initial application. By understanding the challenges that MS presents in the SSDI application process and by following a few simple guidelines, you can improve your chances of success the first time around. 
 
Determining disability among people with MS
 
To be eligible for SSDI benefits, you must have a medical impairment that has (or is expected) to last at least 12 months. Thus, having an MS exacerbation by itself will not entitle someone to receive SSDI benefits because exacerbations often resolve without permanent disability. (On the other hand, private short-term disability benefits are sometimes available; check with your employer.) Your neurologist’s record will be very important in determining whether you have a qualifying medical impairment. 
 
The SSA has described impairments that are considered severe enough to find someone disabled. These are sometimes referred to as the “Listings.” The specific criteria that qualify someone with MS to receive benefits are complex, but generally include significant weakness, visual problems, cognitive problems, or fatigue. The specific language for the MS listing (11.09) (12) can be found on the web at: www.ssa.gov/disability/professionals/bluebook/AdultListings.htm.  
 
Potential problems for people with MS applying for SSDI
 
The problem for people with cognitive problems and fatigue who are applying for SSDI is that the typical neurological examination is not designed to assess these symptoms in detail. Thus their medical records may not support their application with objective evidence of their most significant impairments.
 
Deciding whether and when to apply for benefits can also be difficult, since an inability to work usually develops gradually. To successfully apply for disability benefits, an applicant must not be earning more than $860 per month. As a practical matter, this means that an applicant must quit his or her job prior to applying for disability benefits, a tough gamble.
 
Anticipate the need: Anticipate that you will need to apply for disability benefits at some time in the future. If possible, keep any private disability insurance you have, because you may not be able to purchase it again because of your diagnosis. Check to see if you are eligible for SSDI. If not, identify what steps, such as accepting part-time employment, may make you eligible.
 
Understand the benefits: Understand the details of the specific benefits that you may be entitled to if you become disabled. Every year the SSA sends out a statement describing these. Your dependents may be able to qualify to receive benefits if you become disabled.
 
Take an active role with your medical record: Ask your healthcare provider to record any work-related difficulties in your medical record even while you are thriving in your work role. Your application will be stronger if there is a long pattern (longitudinal history) of symptoms rather than a sudden emergence immediately prior to your application. This is especially important if your primary symptoms are fatigue or cognitive dysfunction, which are not as likely to be well-documented in your medical record.
 
Anticipate a gap: You are not entitled to insurance through Medicare for two years after receiving SSDI payments. For those with a working spouse who has employer-provided medical insurance, this may not be a big problem. For others, this gap in coverage may create significant problems.
 
Consult your medical provider: Talk with your healthcare provider before applying for SSDI. Review whether your symptoms are reflected in your medical record. Anticipate that you may need to be referred for additional testing, such as neuropsychological testing or speech-language testing (if you have cognitive problems) or occupational therapy (if you have fatigue problems). Remember, your neurologist’s record is likely to be critical in determining whether you are disabled.
 
Detail all symptoms: When describing your symptoms to Social Security, provide as much detail as possible and do not merely describe your abilities on your best days. Include the difficult days, heat-related symptoms, and any other factors that may make work impossible.
 
Seek legal assistance: If your initial claim is denied, consider hiring an attorney to help advocate for you. In this context, attorneys usually receive a percentage of the amount received if you are ultimately successful.
 
Contact the Rocky Mountain MS Center: Thanks to a generous grant from MS Focus: The Multiple Sclerosis Foundation, the Rocky Mountain MS Center was able to develop an educational program to help people through the application process by offering a one-on-one consultation with an expert. For more information, contact the center at 303-788-4030 ext. 103.
 
(Last reviewed 7/2009)