The Elusive Process of SSA Disability Benefits

Because most adults with moderate to severe Cyclic Vomiting Syndrome (CVS) and Abdominal Migraines have a difficult time maintaining employment, it is to no surprise that we apply for disability benefits out of necessity.  However, because CVS is a digestive functional disorder, it is difficult to obtain Social Security Administration (SSA) disability benefits. That is because the SSA believes that digestive disorders should heal or become manageable within one year via medication or surgery; therefore, digestive disorders are one of the hardest types of disabilities to prove to the SSA.  Also, CVS and Abdominal Migraines are functional disorders, which means that even though our body is impaired and not functioning properly, under examination and tests, the body looks completely normal.  For example, when you have a headache, there is pain, but no tests will indicate any abnormalities with your brain.

It is clear that CVSers are already at a disadvantage because not only is our illness rare and misunderstood, but also our ailment is a digestive functional disorder.  Additionally, CVS is also classified as a neurological disorder, more specifically, a migraine variant.  As much as you and your doctor know that you need disability because of your high frequency and long duration of your episodes, it is the SSA that you will need to prove how sick or disable you are.  You will need to prove both how your illness or disability interferes with being gainfully employed, and how it negatively affects your life and the lives around you.

The first time I applied for SSA disability benefits, I was in college.  Because I spent my college career mainly going to the ER and always playing catch up, I felt as though it would be advantageous to apply for disability since my illness negatively impacted my ability to learn and to attend classes. In fact, I missed about fifty percent of my classes.  I decided not to use a lawyer because I was so convinced that it would be a no brainer since I spend most of my life being sick rather than being well.  I remember the day when I received my determination letter from the SSA.  It was a nice, sunny Spring day and because I was so ecstatic, I ran to my college's Health Center like an excited child running to an ice-cream truck.

However, my glee quickly turned into disappointment and burning frustration because they didn't approve me.  I felt my heart sink to the floor.  The reason why I didn't get approved was because they believed that I still could find “gainful employment” even though it was clear I had a debilitating illness.  Say what!  Are they really serious?  I almost could not contain my frustration and in response to the letter, I called the SSA sobbing and told them that they should find me a job or better yet have me work there so they can see how unreliable my illness makes me.

I wanted to appeal the SSA’s decision but my graduation was my priority and I am happy to say that I graduated with honors.  After that, the next goal was finding a job and, most of all, keeping it.  After all, the SSA deemed me healthy enough to work, and I thought that if I had the will to stay well, then, I wouldn’t need to file for disability again.  However, that was just wishful thinking at best.             

I received a part-time job from my alma mater but after a few months of presenting great work, I was asked to resign because I missed a lot of work being sick.  Since my alma mater worked with me so that I could graduate, I naively thought that they would work with me, but again, that was wishful thinking.  When they asked me to resign, that was when it hit me like a hammer to a nail; the world doesn't take kindly to sick people.  Sick and disabled people are considered taboo and a burden to society.  At work, we are considered a liability rather than an asset.  That is why we end up applying for disability because we learn that no employer wants to work with a sick or disabled employee over a healthy one. And they say discrimination in the workplace is not tolerated.  What a lie that is!  For instance, one of my bosses sent me an email stating how I should cut my losses and quit because she needs someone 100% healthy.  And yes, I took this matter up with Human Resources because she was discriminating against me based on my illness.

There are a lot of people that don't understand the process of applying for disability.  Just because you are sick a lot doesn't mean you will automatically obtain or qualify for SSA disability benefits.  When you apply for SSA disability for the first time, fifty to seventy-five percent of people automatically get denied.  In fact, when you are looking for a lawyer, he or she will advise you to apply on your own first and come after you are denied.  That’s because when you appeal, your odds are slightly better since fifty percent of people will get approved.  If you are really sick, it's your job to convince the SSA that you deserve and need SSA disability benefits with or without a lawyer.

Here is some helpful information in regards to applying for SSA disability benefits.  First of all, there are two programs for the SSA, the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).  These programs are based on your age, your education, your employment and medical history, and your medical condition.  The main difference between the two is that SSDI is available to workers who have accumulated a sufficient number of work credits.  On the other hand, SSI is available to low-income individuals who have never worked or who have not earned enough work credits to quality for SSDI.  Additionally, SSI has nothing to do with work history, but mainly on financial need. You can receive both SSDI and SSI if your SSDI benefit is too low.  SSI is then used to make up the difference.  Also, your premium also depends on any other income you receive and what state you reside.  After you have applied, you should expect 30 days up to 12 months for the application to be processed.

If you are appealing the SSA's decision, collect your own medical records from all of your past and present doctors, and if you are a frequent flier to the hospital, go to the medical records office and ask them to give you a list of all the days you were in the hospital in addition to your medical records. Furthermore, I would suggest you go to your past employers and ask them to write a letter on your behalf detailing how much your illness limited you from completing the basic job descriptions.  In addition, contact your school, and have the administration write a letter detailing all the accommodations they made for you so that you could succeed.  Also, stay on top of the process and make sure everyone is doing his or her part.  Keep everything that is pertinent to your appeal and have the necessary information, such as:

·       Doctors names, email, and addresses

·       The date you became disabled

·       The dates of doctor visits

·       Test results, hospitalization dates 

·       Birth Certificate

·       Bank statements

·       Work history and resume

·       W-2 forms and current income

Sometimes people get denied from SSA disability because some doctors never hand in their paperwork, or they don’t do it in the time allotted.  That is why it is so important to gather your own records to ensure that scenario doesn't happen.  If you feel like it is necessary, get a reputable lawyer who specializes in Disability Law, both SSI and SSDI.  If you did try finding a lawyer, many clients run into law offices that only work with SSDI disability benefits.  While you may have a better chance winning your appeal with a lawyer, please do not leave all your faith in your lawyer. Rather, get as much information about SSA disability as possible.  Research it on the web, call agencies that offer help in applying for and appealing disability, go to the library and borrow as many books that will help you understand how to fill out the application correctly, and how to do an appeal, and everything that has to do with Social Security Disability and Medicare benefits.

I was awarded benefits in 2011 and I didn't use a lawyer.  Instead, I bought a book called Nolo's Guide to Social Security Disability.  Because I didn’t use a lawyer, I saved myself $6,000 of my disability back pay that only goes back 12 months prior to the date you applied.  That is called a contingency fee.  Moreover, other lawyers ask for a fee upfront for out-of-pocket expenses.   If you lose, however, the lawyer does not get paid, and I believe that is why they usually won't work with clients until they start the appeals process

The most important thing to know is that you must be prepared and stay on top of the process. Keep a track of your correspondence, names, dates, and times as a document.  If your medical providers fail to do their part, it will affect you negatively, because then, the SSA will appoint a SSA doctor who doesn't know you to determine your eligibility and that might work against you.  I would also like to note than when it comes to Medicare, it doesn't matter if you have SSI or SSDI.  When you are approved for either program, you will have to wait 24 months starting from the date of eligibility before getting Medicare benefits.  Once you are on Medicare, it covers only 80% of your medical expenses, and the patient is responsible for 20% of medical expenses.  Depending on your finances, some people look into supplemental coverage to take care of the 20% Medicare doesn't pay for while other people who lack the finances might qualify for government programs, such as Medicaid that will cover the 20% for which the patient is responsible.

In regards to CVSers and abdominal migraine sufferers, we tend to have other debilitating illnesses that we fail to highlight on our application.  Because CVS and abdominal migraines are not in my control, I have developed a bad case of anxiety, which is common for many sufferers.  Furthermore, when I applied again, I also added anxiety and depression to it.  

I suffered from these illnesses as a result of living with CVS and Abdominal Migraines but I was not diagnosed.  Because I was not diagnosed, SSA required me to see one of their state appointed psychologist to determine whether or not I had anxiety and depression.  After seeing their psychologist, I was diagnosed with anxiety, but not with depression.

When I re-applied, I filled out the application by myself without legal advice just as I did in college, but what I did differently was educate myself on SSA Disability and Medicare by finding pertinent books and agencies that provided the most comprehensive information on Social Security Disability. I sent my application out and three months later I was approved.  I called and asked SSA what I was approved for, and they replied that it was for both generalized digestive disorder and anxiety disorder. I am certain had I not used those resources, I would not have known how to correctly fill out the application and get what I deserved.

All in all, getting disability for CVS is very elusive and difficult, but it’s not impossible. Stay strong in your convictions and always fight for what you believe in no matter what.  Complaining about being denied disability will only add negativity in your life.  Instead, delete those negative thoughts and stay positive and motivated.  Then, look for an experienced lawyer to help you appeal the SSA’s decision.  At this point, having a lawyer will increase your chances of getting approved because the lawyer understands the system and knows exactly what moves are necessary to take to win. With that said, good luck on obtaining SSA disability, don’t give up, and be the CVS warrior we are all meant to be.