by Dan

Dan was diagnosed with an anaplastic oligodendroglioma brain tumor in 2006. Prior to his diagnosis, Dan worked as a Human Resources Manager for twelve years in the private sector. After treatment, Dan made the decision to not return to work. Dan is now 39 years old. He lives with his wife and three boys. He tells his story below about his experience with accessing Social Security Disability Insurance and Medicare.

Listen to Dan's story:

I worked in human resources for 12 years, so even before I was diagnosed with a brain tumor, I was well informed about public and private benefit plans. When it was time for me to apply to Social Security Disability Insurance, it was no surprise I saw the "red tape" and how long it takes to receive benefits.

My application was rejected on the first submission. The most probable reason was that I had a grade III tumor instead of grade IV tumor. However, persistence is the key. Once denied the first time by the Social Security Administration, I contacted an attorney specializing in Social Security disability benefits. On my behalf, my new attorney took over the case and proceeded to appeal the Social Security Administration’s decision. 

The Social Security Administration ultimately decides an approval for disability benefits. Although it can me time consuming and difficult, it's worth it to explore all of your options and remain persistent. Assuming an attorney is retained, he or she will be paid a maximum amount per federal law for their representation fee (in 2011, *$6,000). That amount will be deducted from any lump sum with retroactive benefits paid by the Social Security Administration. Any monthly disability benefits going forward will be based on the amount of money earned over your lifespan and working years. The Social Security Administration performs this calculation and will send an Award Letter to any approved beneficiary. Once approved for Social Security Benefits, recipients are automatically eligible to participate in Medicare. However, Medicare benefits don't go into effect until 24 months after receiving Social Security Disability for those under 65 years old (see the resource section below for finding the most current information).

Although difficult to navigate initially, I find the federal Social Security and Medicare programs much easer to navigate than my previous medical benefits through my former employer. I have the same opinion of the private disability plan for which I receive a small benefit every month through my former employer. In other words, in my experience the federal government disability and medical programs are more patient-friendly for us brain tumor patients than the private plans. Ultimately, I think the reason is the Social Security Administration does so much extensive research and follow-up (i.e., disability case investigation) that they are able to drill down more effectively on those patients truly in need of benefits. Private and employer plans, however, can be more quick to approve benefits sooner from the original date of disability and can quite often play more catch-up with their ongoing claims follow-up. Hence, there is some administrative redundancy that can occur under private plans.

For those of us brain tumor patients, this process is quite a roller coaster. Ensuring adequate patient support for these ongoing matters is critically important. It is hard enough simply to handle the daily effects of brain tumor treatment. Having the support system in place is critical to manage such difficult decisions. NBTS can assist with questions such as these. Please contact the NBTS via phone, email, or through the website for more information.

*The information expressed in this story is based on Dan’s personal experience. For the most up-to-date information on federal benefits, please refer to the resources below.

Social Security
www.ssa.gov

Disibility.gov
www.disability.gov

Medicare.gov
www.medicare.gov

Cancer Legal Resource Center
www.disabilityrightslegalcenter.org