2016, Dementia

12.11.16 Social Security Disability

13036I’ve always heard, and I’m sure that ya’ll have also, that applying and getting Social Security Disability is a difficult road to go on and almost impossible to get on the first try.  In a nutshell, yep that’s how it was for me. I’ve been saying I’d write this for over a year but now I think I need to because I’m forgetting so much of this.  Thankfully I kept copies of all the documentation I sent to them and the correspondence from them.  That helped me a lot with writing this.

When I retired from Southeastern I chose regular retirement.  Didn’t know at that point that I truly was disabled and didn’t know there was an option to take disability retirement.  Maybe I didn’t do all my research but no one ever mentioned it so I didn’t go that route.  I prepared an appeal to LASERS (the Louisiana Retirement plan I’m in.)  It required a letter from my supervisor which she prepared.  It then went to Southeastern’s Human Resources department for approval prior to going on the the state LASERS office.  I was told by HR that I could not apply because I didn’t select disability retirement when I retired.  This info will be important later in this story.

I originally was diagnosed with brain issues back in 2011, however at that time it didn’t seem to be a disability that would stop me from 14993201-social-security-word-cloud-concept-in-red-and-black-letters-with-great-terms-such-as-fica-age-65-retworking and I kept working a couple of years until 2013.

Between 2013 and 2014 my brain issues seemed to get worse and I looked into Social Security Disability because I worked most of my work life under Social Security.

In December of 2014 I had a through blood test to determine if I had some vitamin deficiency that would be causing my deficiencies) but for once all was good.

In January of 2015 my neurologist wrote a letter to the Social Security Administration stating that he believed that I am totally disabled due to my significant brain atrophy (shrinkage) in the frontal lob to temporal lobe as well as the posterior fossa and cerebellum.

aaca_braininjury_2I applied for Social Security Disability online in March of 2015.

I submitted the letter from my neurologist and so many other documents I can’t count them.  Several of them were lost and I resubmitted them.  I called each month to find out the status and learned that the determination of disability is handled by several different departments within Social Security.  Each time it went to a new department it had to wait for its turn to be reviewed.  Each department would request various documents from me and I’d send them.  Nothing is done electronically once you apply so tacking on US Mail time each time added to the process.

In May of 2015 I received a determine that I was not disabled enough and didn’t meet their guidelines.images

In June of 2015, the appeal re-submission process began.  Another form to fill out.

In July of 2015 they acknowledged receipt of the re-submission.  Requests from them for more documentation were received.

The documentation submitted included a new neuropsych assessment report from Dr. Melissa Aubert in Metairie. The neuropsych assessment involved almost a whole day in her office taking tests. I also submitted a letter from my last boss at Southeastern who saw the deterioration of my abilities on a daily basis prior to retiring.

In August of 2015  they sent a 10 page report for Roy to fill out titled Function Report – Adult – Third Party.  Lots of questions.  It was painful to read the honest answers.

After reading these three documents it sunk in that this disability is real.

130529-social-securityFinally in January of 2016 I received a notification that approved my Social Security Disability request, but there would be no monthly disability payment.  Here’s where Southeastern retirement is important.  Social Security said that because I worked the last 15 years for a State of Louisiana agency that Louisiana retirement should pay me disability.   The State of Louisiana says its not their responsibility and Social Security says it’s not their responsibility.

The thing that was actually awarded to me was that at 62 I was eligible for Medicare instead of at 65.  This began in February.  They do not pay for my Medicare but between Roy and I both being on Medicare and our reduced Southeastern Blue Cross insurance rates we are saving around $100 per month in premiums and every doctor visit we’ve had required no co-payment because the combination of Medicare and Blue Cross take care of the co-payment.  Prescription coverage is amazing now with Medicare.

They also covered something quite amazing.  Social Security sent a notice to my student loan folks, Nelnet, saying I am totally disabled and that they should discharge my debt to them – make it go away!  That’s several thousand dollars we don’t have to pay back.

Because of all we’ve gone through with the Social Security Disability in this process, and the fact that I would turn 62 in September when I could start receiving regular Social Security, I chose not to pursue it any further with the State of Louisiana.

To summarize, it took almost 12 months and one rejection to get the final determination of approved.  The paperwork and number of phone calls is enormous and seemingly never ending.  I’m sharing all this to help someone who may be deciding to pursue this.  My conclusion is that it is worth pursuing but be prepared from the beginning to stay on top of it and don’t let it overwhelm you.  Having a brain disability added a different aspect to this since everything I had to do relied on my brain cooperating.  Oh, and we did not use an attorney for the appeal.

I’m hopeful this information will help someone.  Please feel free to share this with someone you know that is disabled and wants to apply for Social Security.  If you are not positive you are disabled, apply anyway and let them determine if you are. Also a note to State of Louisiana employees who think they may be disabled, choose that option for retirement and provide whatever documentation the state asks for.  I absolutely believe the State of Louisiana should have allowed me to change my retirement option at the time I learned I was disabled.  Don’t put yourself in the same situation I did.

I don’t mean to badmouth Southeastern, they have been wonderful to our family over the years.  This retirement issue is one of the only bad spots in my time there.

I plan to write here and in my dementia blog next about what the neuropsych assessment is all about and what to expect if you have or need one. If you or a loved one is showing signs of memory loss or other cognitive deficiencies make an appointment, find out if it is a concern or feel the relief that is is not.  If they determine that there is something to medically look into they will send you to a neurologist for medical testing.  I encourage you to take that step.

Ya’ll come back now, ya’ hear!



Click on the links below to go there!

Wacky Wonderful Wednesdays published on Wednesdays

Some Things I Learned About Dementia published randomly







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