Back in 2006, I wrote a blog post entitled “Narcolepsy as a Basis for Social Security Disability.” In that post, I noted that there is no “listing” for narcolepsy, meaning that a successful claim would have to rely on a “functional capacity” argument and that you may need more than strictly medical evidence to persuade your judge.
Recently, I received an email from a gentleman named Michael who asked for some additional information:
I have narcolepsy and even the maximum doses of medications don’t help. I keep losing jobs and will be losing my current job due to this. I do exceptionally well at my job when I feel alright, but I spend at least twenty hours of the day not functional. I’m currently telecommuting full-time and I still can’t stay awake and clear long enough each day to do my work. When I work on-site at a job, people accuse me of being an alcoholic or drug addict because I look terrible and slur my words and fall asleep several times per day. The only thing that prolongs my jobs is that when I’m feeling alright, I am sharper than most and unusually productive. So, they smell my breath and check my arms for tracks and I try to convince them that I’m just tired and that usually suffices for a while, but once again I’m losing my job. I am getting worse as I get older and I can’t maintain myself or watch my own child or regularly brush my teeth, etc. It’s a horrible situation and I’m looking at losing everything (job loss) and I don’t think I will be able to recover my finances this time because my narcolepsy is getting so bad. How could I get disability for this? What happens if a treatment comes around that works, can I get back off disability? If I can somehow start a business and hire other people to do the work in order to get off disability, would I be penalized for trying to get off disability? Even working full-time telecommuting, I get accused of being drunk or using drugs because I randomly sound drunk or on drugs even over the phone. It is so frustrating. Please advise as to what options I have, if any, and thank you for writing something up on the web about this.
Here are my thoughts: Yes, narcolepsy can be the basis for a Social Security disability claim. Please refer to my August, 2006 blog post referenced above. If a new treatment is developed, you may absolutely terminate your disability – in fact, if you return to work you are required to notify the Social Security Administration.
SSA encourages disabled claimants to try to return to work. You are eligible for a trial work period of up to 9 months in which you continue to collect your full benefit even while working, and you are eligible for an extended period of disability, which expedites your return to disabled status if you are unsuccessful in your return to work (after your 9 month trial work period). You can read more about trial work periods and the extended period of disability by clicking on the link.
I would be careful about the home based business idea. As I have said on many occasions, Social Security sees disability in black and white terms – either you are or you are not. If you perform part time work, or if you manage a profitable business part time, you will have an uphill battle convinciing Social Security that you are not engaged in “substantial work.”
Let me also suggest to Michael that he look into his rights under the Americans With Disabilities Act. Under this law, covered employers are required to make “reasonable accommodations” for workers with certain medical conditions. I am not an ADA lawyer but I think that this law may have some applicability here.
Bottom line – for Michael, he may very well have a viable narcolepsy disability claim. That claim will have the best chance of success if he is not working while the claim is pending and if he gathers medical, employment and personal observation evidence to support his claim.
Jonathan Ginsberg represents Social Security disability claimants in Georgia. In practice for over 29 years, Jonathan publishes a widely known disability blog, a podcast and several disability web sites. In 2004, Jonathan published a "how to" book about Social Security disability called the Disability Answer Guide. Jonathan lives with his wife and 2 children in Atlanta.