Jul 14, 2011

Social Security Disability and Dysautonomia: What You Need to Know

The author, Lauren Stiles, is an Attorney from Long Island, New York. She was diagnosed with autonomic neuropathy and POTS in 2010.
     Some people with dysautonomia are unable to earn a living sufficient to support themselves or their families. This problem is not limited to dysautonomia patients. In fact, one in nine Americans lives with a severe disability and according to a study published by Hofstra University Professor Dr. Frank Bowe, more than a quarter live in poverty, more than 75% earn less than $20,000 annually, and fewer than 50% have private health insurance.

     You may want to consider applying for Social Security if your dysautonomia symptoms are severe enough to prevent you from earning a living, if your daily medical care limits your spouses ability to work, or if you are caring for a child with a disability.  Please note that as of June 2011, the spousal caretaker federal benefit is not available to couples in same-sex marriages or civil unions. The federal government does not currently recognize same-sex marriages or civil unions, however state disability assistance programs may be available if your state recognizes same-sex marriages or civil unions.

     There are two types of Social Security assistance you should know about. The first is called Social Security Disability Income (SSDI) and it is meant for individuals who cannot work enough to earn a living because of their disability. Sometimes members of a disabled person's family and disabled children can receive SSDI benefits as well. The second type is called Social Security Supplemental Income (SSI). SSI is meant for individuals who are living in poverty, whether or not the situation is caused by a disability. Some people may qualify for both types of Social Security assistance, which is called concurrent eligibility. While each person's situation is unique, this article will attempt to give a general overview of the SSDI program. You may want to consult an attorney with expertise in social security applications or a disability services organization before applying for either of these programs, to make sure you present the best application possible and maximize your likelihood of getting approved. Before applying, you should also visit Social Security's website to learn as much as you can about the approval process.

     In order to qualify for SSDI, there are various tests the federal government has designed to qualify applicants. The first is called the recent work test, which sets a timeframe you had to have worked in based on your age. The second is the duration of work test, which sets the total years you have to have worked, also based on your age. For most people, you must have paid a certain amount into the Social Security system before you can qualify for SSDI benefits. However, there are many exceptions to these tests that allow certain disabled children, disabled young adults who have not worked much, or older adults who have been disabled since childhood to still qualify for SSDI.
     The next test is whether you fit into the SSDI definition of disabled. This is not necessarily the same as other disability definitions used by insurance companies or employers. SSDI is only available to those who cannot do the work they did before they became disabled, who cannot adjust to other work because of their disability and who have a disability expected to last one year or more or to result in death. There is a list of specific conditions which automatically qualify as disabled on the Social Security website, but if you do not have one of those conditions, Social Security will evaluate your claim individually.

     For example, let's say you worked as a pilot for several years before you developed POTS. Once you developed POTS, you started passing out all the time, which made it unsafe for you to be a pilot. For the sake of discussion, let's say your doctors can't find any medical therapy that prevents you from passing out all the time, so you cannot work as a pilot while you are experiencing these symptoms. Let's also assume that being a pilot is the only thing you know how to do and the only thing you were ever trained for. If your doctors confirm that your disabling POTS symptoms (those symptoms that prevent you from working) are likely to last more than one year, it is likely that you would get approved for SSDI, even though POTS is not on the list of conditions that automatically qualify as a disability.

     However, if you were trained as a graphic designer before you were a pilot, and your POTS symptoms don't prevent you from working a graphic designer on your laptop from the own comfort of your couch, it is possible that Social Security would deny your claim for SSDI. This is because Social Security doesn't only look to see if you can do your current pilot job, what they really look at is if you could engage in any substantial gainful activity(SGA). In 2011, SGA is defined as having the ability to earn $1000 per month ($1640 per month if you are blind). So if there is any job you are properly trained for and you can physically do it despite your POTS symptoms, and that job could earn you $1000 a month, you probably won't qualify for SSDI. Social Security doesn't take into account the fact that the jobs you may be qualified for may not be available. Just because the economy is in a downturn and you can't find a graphic design job that pays at least $1000 a month working from home, doesn't mean you'll get approved for SSDI.

     Social Security also looks into whether or not you can take measures that would enable you to overcome your disability enough to work. For example, if you are a bus driver and you can't work because your vision suddenly became very blurry, but your doctor says that if you wear corrective eyeglasses your vision with be perfect again, Social Security will require you to try wearing eyeglasses to improve your vision before they considered you disabled. If the eyeglasses fix your vision problem so that you can drive the bus again, your SSDI application would be denied. It's a bit more complicated when it comes to medications, because a medicine might help your disabling symptom, but sometimes can cause dangerous side effects or other disabling symptoms. The rule of thumb with medications is that if you are refusing to try what your doctors have prescribed to alleviate your disabling symptom, you will probably be denied SSDI, unless your medical records can explain why you are not taking that medication (i.e., you are allergic to it, you have tried it in the past with another doctor and had a bad reaction, it is contraindicated with other drugs you are also being prescribed, etc.).

     Probably the most important thing you can do when preparing to submit your SSDI application is make sure the Social Security Administration has detailed paperwork on the severity and symptoms of your illness and how it impacts your ability to work. POTS, MSA and other forms of dysautonomia are not common enough for the social Security reviewers to know what your symptoms are like. You have to explain in great detail what your day is like, and what your limitations are. Tell them every debilitating problem you have to deal with on your bad days and make sure your doctor has documented all of your symptoms. Maybe you have trouble focusing your eyes, and your job requires you to read. Maybe you have trouble speaking without getting very short of breath, and your job requires you to speak throughout the day. Maybe you can't stand for long periods of time, and your job requires you to stand up all the time. You want to tell Social Security about the symptoms that prevent you from doing your current job, and also symptoms that prevent from taking on another job you might otherwise be qualified for. Using our pilot example from above, the frequent fainting would prevent our POTS patient from working as a pilot, and if he also had severe vision problems or motor coordination difficulties, perhaps he cannot regularly work as a graphic designer from home either.

     You should speak with your doctor before you apply and make sure he/she understands how important the application is to you. Ask your doctor to carefully document all of your symptoms so that when Social Security asks for your medical records, there is something written about each of your symptoms in your doctor's files. Social Security can contact every doctor who has ever treated your dysautonomia, although they usually only know which doctors have treated you based on the names of the doctors you provide them with on your application forms. If Social Security wants records from your doctor, they contact the doctor directly and there are laws that require the doctor to respond. If the doctor is slow in responding, it will delay your application. You may not even know if Social Security has contacted a particular doctor, and if they have, you also don't know exactly what that doctor may have sent to Social Security. Therefore, I recommend getting your own copies of the most important tests results and doctors correspondence before you apply, so that you can send in copies of those important records with your application.

     As the old saying goes, "he with the most paperwork wins." If your doctor is not the type to take detailed notes on every symptom you tell him about, you can make his job easier by giving him a detailed list of all of your symptoms and asking him to submit it along with the rest of your medical records when Social Security contacts him. You can put your name and the date on the top of the typed symptom list to make it look as professional as possible. Use proper medical terms like, “severe vomiting two to three times daily,” and “persistent vertigo,”rather than, “I puke all day and my head is spinning like a washing machine.”

     Once you have familiarized yourself with the process and taken the time to gather your records and prep your doctors, the application itself is fairly simple. You can apply for SSDI online or you can make an appointment to fill out the application at your local Social Security office by calling 1-800-772-1213. 

     It takes an average of six months from the date you complete the application to the time of the approval or denial decision. If you are approved for SSDI, the maximum benefit check you can receive in 2011 is $2,224, but most people receive much less than that. You cannot receive payments for the first five months of your disability, so you usually start receiving benefits on the six month. If Social Security takes a long time to make its decision on your application, you can get a retroactive payment for the months you were waiting once your are approved.

     If you are approved for SSDI, you are required to notify Social Security if your medical situation improves or if you begin to work again. Social Security will periodically review your case, and you may have to provide documentation from your doctor that you are still disabled. While there is no hard and fast rule, most cases are reviewed every three to five years. If you are starting to feel a little better, but you're not quite sure it is a permanent improvement, Social Security has an Incentive to Work program that let's you return to work for a trial period before your benefits are stopped this is to let you test the waters and see if you are really healthy enough to return to work. In that period, you will get your regular paycheck and your SSDI check. If you are able to work successfully for a few months, your benefits will eventually cease.


  1. Excellent article you wrote, Lauren! Only thing I would add is that even if you do all the right things, and get all the right paperwork, and prove your case, at least in California they are trying to save money desperately, and are denying everyone. I was denied twice, and the third time I used a representative: they submitted the same paperwork and I was approved, without even having to go before an admin. law judge. It's just soooo hard to get approved these days, because the states are trying to save money, so if you need it quickly, it's prudent to hire a representative! Otherwise it could take years, if ever, before you are approved. (At least in CA it's this way...) Thanks for your blog, I look forward to your posts! :)

  2. Thank you so much, I really appreciate this article.