Misunderstanding Social Security Disability Insurance

Some people think it is wrong of us to be going through this process of applying for disability. After all, I am still working so we should not be trying to take advantage of the system. 

The misunderstanding lies in what it is the we are actually applying for. 

What we are applying for is called Social Security Disability Insurance or SSDI. This is financial benefits based on a person's work history and funded through the FICA taxes that are taken out of your paycheck. It is the same as the money you would be collecting from when you retire and collect social security benefits. You have to work a certain number of years in order to qualify for this insurance. Since Robert has been working almost all of the last 35 years or so, he has met that requirement. 

There is another type of social security benefit that is available to those who are unable to work due to a disability. It is called Supplemental Security Income or SSI. SSI is a federally funded program providing financial help for those who have limited income and assets. The funding for this program comes from the general treasury fund and not Social Security itself. You must make less than the monthly maximum that your state government has set in order to obtain SSI. They also factor your spouses income into this. Needless to say, we do not meet the income requirements. 

There are some people I know that have opted to divorce their spouse on paper so they might qualify for the SSI benefits as well. Rest assured, Robert and I will not be doing that.

We are not trying to take advantage of "the system". Essentially, we are simply asking if we can have the money that Robert would get when he retires now instead of 20 years from now when he would reach retirement age. After all, given the way Huntington's Disease manifests it self in a person's body, Robert most likely won't be around long enough to collect all the money he has been paying in to Social Security all these years. As morbid of a thought as it might be, it is the reality we face. 

Hopefully, this helps clear up some of the misinformation out there. 

The Saga of Applying for Disability Part II

 Ugh!!!

More Paperwork!!!

We got two different letters in the mail requesting more information.  Both contained a bunch of paperwork that we had to fill out and fax back to them. At least this time, we were given 15 days to complete them.

The first set was a request for extensive work history of all the jobs you have had in the last 15 years. Luckily, since Robert has only had three jobs in that time, it wasn't as bad as it could have been. They want to know what all your job functions were and why you can't do them any more. You had to detail how many hours you spent each day doing all of the various functions of your job. 

The second set was about day to day life. You have to go into detail about all of your day to day activities and how they have been affected. You have to detail things like if you can shower every day, cook food, do basic household chores and so much more. 

I was the one that filled out all of this paperwork for Robert since it is somewhat of a struggle for him. He has trouble sometimes putting his thoughts into words that make sense to you and me. His handwriting, while never great, has gotten progressively worse over the last few years.

If Robert did not have me to help him out and advocate for him, what would he do? Would there be someone out there to help him. Realistically, I know he has family that would, but what if he didn't have them around? What if he was all alone in the world? 

It makes me think of all of those that are struggling and nobody around to help.  This process is a bit overwhelming for me and I am not faced with the loss of brain function that so many who struggle with the onset of HD do. I can only begin to imagine how stressful it would be to face this all alone.

Anyway, the most recent round of paperwork has been filled out and submitted. Now, we wait again either for more paperwork that will be needed or a decision to be made. 

The Saga of Applying for Social Security Disability

The process of applying for Social Security Disability is not easy. I can only imagine how someone who is struggling with Huntington's Disease would be overwhelmed by it all. I am somewhat overwhelmed by it and I don't have the cognitive issues that my husband and so many others do.

We filed the initial application towards the end of January. We filled out numerous forms on line that gave them permission to contact doctors for test results and medical history. We provided exact dates, addresses and phone number of each appointment. We gave extensive work history for all jobs he has had for the last 15 years - including pay. We even gave them our contact info and let them know that we had paper copies of all the test results, doctors appointment and medical history.

Last week, I made a call to the local office to see if we could drop off copies of this paperwork and even a letter from Robert's former employer who detailed the struggles he saw Robert dealing with and how they gradually seemed to increase as time went on. That in itself was beyond annoying. I would wait on hold anywhere from ten to fifteen minutes only to have my call disconnected. I would immediately call back and get a busy signal.  

Talk about frustrating

Finally after a couple days of calling at various times I was able to contact a live person. Yes, I cold drop the paperwork off at there office in a drop box because most people were working from home. I just had to put the name of the person handling our case. 

Then, this past Saturday (March 6th), we got a letter in the mail saying we needed to fill out yet another form and provide copies of all of this information no later than March 4th. Supposedly, this was the second request for this information. Considering I never got the first request, it was frustrating. Luckily, there was a phone number of our case worker and we were able to call her and discuss with her. 

Only problem... she is actually at an office in Albuquerque, NM. If we dropped if off, the office in Grand Prairie would have to scan all the stuff and then email to her for processing. This process could take several days. It would all depend on how busy the office was. I got the distinct impression that even though it was important and time sensitive to us, it really isn't to the Social Security Administration. 

All of this to say, we are only a little over a month in to the process and it is already overwhelming for Robert. Luckily, he has me as an advocate to help make sense of it all. I wonder what people who do not have someone to help them do.

It really does make you feel like you are beating your head against a wall. We are once again waiting, waiting, waiting. 

Why Now

My first post in a while got a lot of attention.

Mainly because nobody knew what was really going on behind the closed door of our lives.

Honestly, besides a few family members, our pastor and one of my co-workers, nobody had any idea about most of it. Plus, quite a few people were friends that we had acquired in the last five years so they had not read a blog post before. Many of them didn't even know about Robert and his Huntington's Disease diagnosis.

It wasn't necessarily intentional that we didn't share what was going on. It wasn't because we were ashamed that Robert was having issues. After 2020, our problems seemed trivial compared to all of those people that were dealing with family and friends that were fighting for their lives because of all things COVID. There were so many people that were struggling and I didn't want to burden them with our problems. So, I said everything was fine when it really wasn't. 

Then, I heard this song by Matthew West called  Truth Be Told. It was really convicting. 

The premise of the song is that we all like to lie and say things are fine when they aren't. We tell ourselves that we should have it all together and the people around us are living perfect lives so we should just keep everything to ourselves. 

Nobody wants to hear that our lives are a mess. Nobody wants to know that right now:

I'm broken

I'm scared

I'm worried

I'm stressed

I don't have it all together

Things could be better

But, I'm wrong! God already knows all of this. He already knows all about the mess that is our lives right now. He is just waiting for us to reach out to Him and ask for help. Sometimes, that help comes in the form of support from our friends when we admit that things aren't as perfect as we portray them to be. 

The outpouring of love and support that we got from all our friends and family was amazing. It meant so much to us and I cherished each response. It is so comforting to know that we have such wonderful friends and family out there that care.

I hope that I can return the favor. I want everyone one to know that I am here for you, too. I want to hear about the imperfect parts of your life, too. It is only through sharing those broken parts with each other and with God that we can truly get through the struggles. 

So, let the truth be told. Let me know why I can pray for you, too. 

And take a listen to the song.  Truth be Told