Lindsay*** Update: For dysautonomiacs who are filing for disability, my friend Stacy (see comments) has kindly offered the diagnostic code for dysautonomia: 337.9 (confirm this with your attorney).
Hello Readers,
Today I am pleased to feature a post from Molly Clarke at Social Security Disability Help — an informational website that works to promote disability awareness and assist those applying for disability benefits. As I have mentioned before, many people with dysautonomia experience disabling symptoms and are unable to work. However, applying for disability can be difficult, especially for those with an invisible illness like dysautonomia. I am so grateful to Ms. Clarke for writing a guest post for Musings of a Dysautonomiac filled with crucial information for applying for disability. If you have any questions, please contact Ms. Clarke at the email address at the end of the post. Or, if you’d like to share share your thoughts/experiences regarding disability, please feel free to comment below.
Just a reminder that the following is provided for information purposes only, should not be construed as legal advice, and should be independently verified before relying upon such information.
Stay tuned.
– L
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When you have been diagnosed with a disabling condition or illness, it is likely that you will have many concerns about things like symptoms, medications and procedures. At some point your health may force you to leave the workforce. Without a job, you may soon be struggling to make ends meet. Paying for medical bills without an income can quickly cause your finances to spiral out of control. Fortunately, the Social Security Administration (SSA) provides Social Security Disability benefits to help individuals facing circumstances like these.
Before jumping into the application process it is very important to be prepared. The following information will provide you with a very general overview of the Social Security Disability application process and will get you headed in the right direction.
Social Security Disability Programs
The SSA provides disability benefits from two different programs. The first program—Social Security Disability Insurance (SSDI)—is funded by taxes that workers pay into the system. Eligibility for SSDI is determined by an applicant’s work history. A person can only qualify for SSDI if he or she has earned enough of what the SSA calls, “work credits”. Learn more about work credits and SSDI here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi.
The second disability program—Supplemental Security Income (SSI)—is a needs-based program. This means that an individual’s eligibility is determined by his or her income and financial resources. The SSI program is a good option for individuals who may not have enough work credits to qualify for SSDI. Learn more about SSI here: http://www.disability-benefits-help.org/content/about-ssi.
In addition to the previously mentioned technical requirements, it is important that you also meet the SSA’s definition of disability. This essentially means that your condition is expected to last at least a year and that it keeps you from performing any type of work.
Qualifying with Dysautonomia
To determine whether or not an applicant is disabled, the SSA first consults their guidebook of disabling conditions—known as the Blue Book. Although, dysautonomia is not mentioned in the blue book, it is still very possible to qualify for disability benefits with this condition.
When an individual’s condition is not listed in the SSA’s blue book, he or she should determine whether or not their condition closely matches another condition that is listed. Because dysautonomia affects many different body systems, it is very possible for an individual with dysautonomia to qualify under a separate listing. Depending on your specific symptoms, you may qualify under a cardiovascular, digestive, or neurological disorder.
In some cases, applicants may find that their condition—while severely debilitating—does not match any listing in the SSA blue book. If you find yourself in this situation, do not be discouraged. If you find that your specific dysautonomia symptoms do not meet the blue book requirements, your eligibility will be determined based on a form called the Residual Functional Capacity (RFC) form. Basically, this form evaluates exactly how your condition affects your ability to perform every day activities. If your RFC indicates that you are unable to work, it is possible to be awarded disability benefits.
Initiating the Process
Prior to beginning the application process you will want to schedule an appointment with your doctor or doctors to collect all medical records pertaining to your condition. The SSA will view these records as evidence of your condition. Provide documentation of your diagnosis, medical tests, hospitalizations and any other relevant information. You should also ask your doctor to write an official note explaining exactly how your condition affects your ability to hold a job.
It is also important that you have financial records and documentation of your work history available, as the SSA will require these as well.
Once you decide to begin the application process, you can do so on the SSA’s website or in person at your local Social Security office.
It is important to keep in mind that although the process of applying for Social Security Disability benefits may seem stressful, it is an important step toward achieving financial stability.
For further information about disability benefits, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.
Reblogged this on Elegant Ellie's Personal World and commented:
Excellent information from a fellow Spoonie.
There is a diagnostic code for dysautonomia: 337.9
Just an FYI 🙂
That is extremely helpful, thanks for sharing, Stacy!
Thank you for sharing.
thanks appreciate this
Hope it is helpful!
THANK YOU FOR THIS!
Welcome! Hope it helps!
My wife has had a form of muscular dyshtopry for the past 26 years. She has been disabled since 1993. Her physician has documented evidence that she has been disabled since this time. We have been on a four year journey of denials and accusations for Social Security. Our first denial in 2008. They called her disease an alleged disease with alleged symptoms and alleged doctor’s evaluations in our last hearing in October 2012. This was after we we told in December 2011 that she was wrongly denied. But then she was denied again. We were told on January 7, 2012 that concerning her latest denial from January 3, 2012 that too much time had expired and we could not appeal for a hearing, 4 days had past, the law states we have 60 days. In the hearing on October 16, 2012, the judge wanted to dismiss the case before the hearing. Our attorney had to speak to him for 20 minutes just to continue with the case. My wife’s doctor had a narrative with diagnoses and then questions and answers about the disease and her condition. The judge (who has been noted to ask for bribes) gave little weight to the the medical report. He stated he did not agree with it. Even the law states medical reports are to be given the most weight and priority. The judge called the condition (muscular dyshtopry) an alleged condition with alleged symptoms. I guess we should have paid the judge? Is that very common? What is the going rate to pay off the judge?
You have got good information in this case.
I finally got approved for social security disability recently at a hearing(after two tries online). I had to hire a lawyer for the hearing. In addition, I have thoracic outlet syndrome(have bilaterally, proven by two surgeons), degenerative discs in my spine(post two surgeries), and an undifferenitated connective tissue disorder diagnosis(dx’d by a rheumatologist). While I got approved for SSDI now for these three conditions, the dysautonomia was not even mentioned at my hearing even though I have an autonomic specialist that put me through several tests proving I have hyperadrenergic dysautonomia(he said it was far broader of a problem than POTS alone, but POTS is a part of it). Social Security’s doctor was probably over 80 years old and he actually knew what POTS was, but he thought of it on his own after reviewing my heart monitor in the hearing(even though it was mentioned in my autonomic testing report). He apparently overlooked all the material my autonomic specialist sent in and just came to the POTS conclusion on his own from viewing my heart rates on the monitor. I could not interrupt and direct him to my auto specialist’s reports because I was in a hearing and I had not been asked by the judge any questions after the doctor spoke so I didn’t feel allowed to speak up for myself. The judge barely asked me anything, just a few validating questions about my name and SS number and questions of that nature prior to asking Soc Sec’s dr questions. I never had any oppurtunity to talk about my dysautonomia or go over why it causes many symptoms(that many view as somataform) in the body(like parasthesias with fine nerve fiber issues, anxiety rushes, migraines, brain fog, etc). So they went on also use the diagnosis code of anxiety under psychiatric, which makes me very upset because I have been told by my neurologist that my dysautonomia is the cause of most all my symptoms(aside from the TOS & may play a role in the spine problems from abnormal connective tissue–common with dysautonomiacs). So, I left happy I was approved but unhappy they didn’t even consider or include the dysautonomia diagnosis. My lawyer said they don’t have codes in the book for POTS or dysautonomia so this was how they could explain the other symptoms. I hope POTS does get a diagnosis code soon and that someday I can ask them to review my records again and include POTS/hyperadrenergic dysautonomia rather than label me as anxious. I also hope doctors/patients start to spread awareness about it because it can be quite debilitating and nobody wants to be labeled with a psychiatric disorder if that is not what is the culprit of their symptoms. Very frustrating to say the least.
Wow. Thank you so much for sharing your story. I have heard so many people with POTS have difficulty with getting disability, and many of the ones that do end up getting disability get it for a coexisting condition, not POTS, like you. It’s frustrating that there is no POTS/dysautonomia diagnostic code or criteria for disability. We already have to deal with many doctors that tell us our symptoms are psychological or that it’s just anxiety. We keep trying to spread awareness and knowledge that POTS and dysautonomia are real, physical, conditions, but it’s not easy when the easiest way to have our condition validated is to list it as “anxiety”. I’m glad you were approved for disability, but am sorry it was such a long road.
I have been told that the diagnostic code for dysautonomia is 337.9, which is the code for “unspecified disorder of the autonomic nervous system”. It’s the closest they have for dysautonomia for the time being. I hope that changes.
I really appreciate you sharing your story. I am an attorney but never studied disability law in school (I wasn’t ill back then), so I’m trying to learn all I can now. One day I hope to be able to help others with dysautonomia get disability if they need it. Hearing the challenges others have faced is very helpful.
Thanks for the reply and code. For whatever reason, my attorney was not aware of that code. and/or she may have believed my approval chance was higher with a psych disorder attached. Either way, it certainly is frustrating. I am thrilled you are hoping to start helping POTS patients get disability, and I truly hope the medical institution as a whole starts grasping the understanding of this overwhelming disorder.
Thank you for sharing your info. I really appreciate
your efforts and I am waiting for your next post thanks once again.