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Adventures in Applying for and getting SSI Disability

by Cathy C.

My name is Cathy and I’m a von Hippel-Lindau Warrior! I was diagnosed 22 years ago and have been through 12 major surgeries. On May 1st, I came close to dying due to one of my tumors and spent 3 weeks in the hospital. I finally came to the decision that it was time to stop working and apply for social security disability.

The first thing I did was talk to my primary doctor, endocrinologist, other doctors to get their opinions and advice on where to start. I also reached out to friends who have been through the system. I was very lucky to have one friend who’s husband recently retired from running the local SSI office. Everyone I talked to agreed it was time to take this big step and gave me a lot of helpful advice.

I then went on to the Internet and read everything I could find on the Social Security Disability website. I contacted all of the doctors and hospitals I had been to in the last 3 years and ordered copies of all of my medical records. I then began filling out the disability form online, which is the quickest way to do the application. It took me over 10 hours to completely fill out the form. It took me well over a month to prepare to file for Social SecurityDisability.

When filling out the form, I felt that there was no such thing as too much information. I listed every disability I have, including uncontrolled Type 1 diabetes, multiple brain tumors, deafness in one ear, diminished vision in one eye, renal cell carcinoma, VHL, etc. I listed every doctor I see and what each doctor does for me.  I didn’t worry about all of the duplication. Again, I figured there is no such thing as too much information!

1 week after I applied on line, I had a 1 1/2 hour phone conference with Social Security Disability to review my forms, clarify some of my answers, and make everything was entered correctly. I was told I would receive a letter to let me know if I would be approved. The next week I received another call to verify a few more answers. When I asked they had received all medical information, I was told that everything has arrived except for the information from NIH. Fortunately, I had a copy of the NIH recordsso I was able send them off to  Social Security Disability. (Lesson leanred: it is important to collect all medical records so as not to rely on any one institution.) I was then informed that I was being expedited, which is typical procedure for blindness, kidney failure, or being close to death (wonder what they saw in my medical records!).

Two weeks later, I received a letter from the Social Security Disability informing me that I had been approved and would receive my first check in November.  You have to be disabled for 5 months before you begin receiving payment.

The hard part of being on disability is the medical insurance. You cannot receive Medicare for 2 years, so you have to find your own medical insurance through either Cobra (if you are leaving a job, you can pay for your own medical insurance from that job through Cobra) private insurance, or Affordable Care Act (ACA). All of these are expensive!

So unlike all of the horror stories I heard about getting disability, I was approved in one month. I made sure I gave them all of the information they needed, supported my claims with my medical records,  \and used all of the resources I could find to get my approval.

I really don’t think of myself as disabled so this was a huge step for me to take. The support from family, friends, and my doctors made the step a little easier.

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