NBTS Headquarters Blog
I have heard brain tumors described as an ‘invisible’ disability for some. Because you may look the same on the outside, it can be harder for people to understand the effect the tumor has had on your abilities. Indeed, many of the changes people experience are somewhat subtle to a stranger (ie. short term memory loss, slowed processing speed, fatigue) but they may be significant in terms of being able to do the job you had before.
If your brain tumor prevents you from working for more than 6 months and you have worked enough time to qualify, you are entitled to disability benefits from the federal government as a part of the social security program. However, studies have shown that many people with brain tumors do not apply for disability benefits; moreover, even those who do are not always successful in getting approved because their disabilities are not well understood. To make your application successful, it is critical that your disabilities are clearly identified and described in terms of their affect on your ability to do work and have a job; you may need to work with a social worker, nurse, or neuropsychologist to get the information you need to be successful.
This week we are talking about disability benefits—what they are, what you are entitled to, and how to apply and give yourself the best chances of being approved.
Have you applied for disability? Did you get approved? What tips can you share about the process?
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Posted by: Patty on July 26, 2010 5:03PM UEDT
The key to successfully negotiating the labrynth of the SSDI system is to get the best possible doctors. I was diagnosed with a trigeminal schwannoma July '08. Had Gamma knife stereotactic surgery. Still have severe and debilitating headaches. As it is very rare (is anyone else tired of being told that they are the "lucky" host of a very rare tumor?!) I sought out the best possible medical providers. I went to the #1 rated facility in the US and 1 yr later went to the #2. (Interestingly, they have flip flopped places on this years US News & World Report rankings). It is also important to have a Primary Care Provider who stays on top of your case as they are the ones that complete the doctor's portion of the paperwork. It is important to understand the process and the timelines. There is a 5 mo. waiting period even if you are approved on your original application from the day you filed the application. I was approved for SSDI on my initial application. No appeal required. I tried to keep working, even though in the end, it seemed I was punished for continuing to work, albiet only 15 hours every 2 weeks from home. It delayed the date I could claim I was unable to work. It actually took 5 different doctors telling me that if I kept working it would likely have a negative outcome on my long-term recovery before I decided to stop. It was one of the hardest decisions I have had to make - I worked very hard to get achieve the success I had in my career. It was like taking away a large piece of my identity. Now, I am still waiting to see any change from the Gamma knife. 2nd opinion docs said 3-5 years. I hope that means I can go back to work one day, however, I am not looking too far ahead anymore. That's my journey through the govt disability system so far.
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Posted by: MtnGoatJoe on July 27, 2010 1:59PM UEDT
Has anyone found a way around the "worked enough time to qualify" rule? My wife would have had enough time, but we had a baby before the tumor was discovered, an she was in school full time a couple of years before that.
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Posted by: ppearl214 on July 27, 2010 8:09PM UEDT
Hi Harriet (and all)
I am a member of our local Commission of Disability Issues (Secty of the Commission -- Town appointed) and this conversations comes up all the time, esp for those of us with "hidden disabilities". I know of many with my kind of brain tumor (Acoustic Neuromas) and many that have attempted to obtain perm disability. Many have had to go through the "appeal" process.... all of their docs write letters, supply scans and scan results, etc. Too many I know that literally have banged their head against the wall... some taking 2-3 yrs for approval. As a member of the Commission, we are trying to help figure out best ways to help the disabled in our community (of course, I note BT's as one who has endured) find means of trying to work the "system" and not have to go through the literal headache of working the process. Many have shared exactly what Patty has mentioned here and I know it's been a brutal ride for many. I'm going to follow this discussion as my hope is to find others that have worked through the system in an easier way. Thanks to all sharing here. Phyl |
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Posted by: Patty on July 27, 2010 8:29PM UEDT
Phyl, Good to know there are ppl like you on Commissions who can make a difference for the ppl here. This says nothing of the often parallel private Short Term Disability and Long Term Disability through one's employer or purchased privately. Many companies have some sort of STD & LTD. If your treating physicians' say you are unable to do any type of gainful employment, then you should look into starting the paperwork for the STD and then, about 6 weeks before it runs out, start completing the application for the LTD. Of course, the ins co will also want a Treating Physician's stmt. I have often said, I don't know how ppl can be expected to do all of this at the same tiume they are dealing with a brain tumor and it's impact on their life. Social workers can help and attorneys can as well, but no one is going to be as interested in the result as you.
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Posted by: Jill at NBTS on July 28, 2010 11:07AM UEDT
Thank you everyone for sharing your wonderful comments! If you have any further questions about your disability benefits feel free to call the Patient Services Line 800.934.2873. We are here to help connect you with resources so that the process of finding what you need is a little less of a "headache".
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