Things Nobody Tells You

It was one month ago today that we received the news we had been waiting for since January. Robert's application for SSDI was approved. Definitely news that is worth celebrating. However, there are things that nobody tells you about being approved. Things we have had to learn on the fly. 

The first one is when you actually receive your check each month. We assumed that you would receive a check around the third of the month like most people do with Social Security Retirement. That is incorrect. The day you receive your check is based on your birthday. So, Robert will be getting paid on the third Wednesday of the month. While in the long run, it doesn't make must of a difference, it is useful information. For us, it affects how we manage our budget each month. 

The second piece of information that we were not aware of pertains to taxes. Depending on your income, you may or may not have to pay taxes on your benefits. Robert's sister and brother have not had to pay taxes on their benefits because their monthly income is less than the taxable portion. However, if you notice below, for married couples, if the spouse is working, as a couple they will most likely have to pay taxes on the disability. 

You do have the option of having taxes deducted from your check each month if you would like. For some, this is beneficial to help from having that big tax bill at the end of each year. Either way, this is information that everybody needs to be aware of. 

The third piece of information is that you can actually do some limited work while on disability.  However, there are some restrictions. 

In other words, you can go work at Walmart as a greeter part-time if you want. I think this is one that really matters. For someone like Robert, having the ability to do something simple every day will be so helpful. While he will not be your neighborhood Walmart greeter, he does have some options to do things he already knows how to do. This will give him a purpose each day and a reason to get out of bed. Plus, it will help that part work ethic part of him that still exists. It makes him feel like he is helping to contribute to our household income. This all in turn helps him mentally as well. A person's mental state matters more than a lot of people realize so having something like this that will help is extremely helpful.

This journey is far from over. We continue to learn new things each day. As always, I will endeavor to share what we learn to help others navigate this world that is Social Security Disability. 

The Results You Want; The Results You Don't Want

We saw another doctor. We had more testing done. The results were pretty much what we expected. It was a result we wanted; it was a result we really didn’t want.

We went to a neuropsychologist. He specializes in understanding the behavior between the brain and your behavior. He performs a bunch of tests to evaluate how your brain responds and determines  the changes in cognitive abilities. This is part of the process in applying for disability. It helps to show that a person does in fact have cognitive issues that affect their day to day life and ability to perform a job. 

The results are double edged sword. From the standpoint of applying for disability, it was good. From the standpoint of Robert’s progression in the disease, it was bad. 

The test results show his intellectual resources are in the 19th percentile or less. The words that stand out are abnormal, varying degrees of impaired, significantly comprised, uneven, deficient and below average in various categories for the 13 different tests that were performed. 

There is no doubt about it. Robert has a severe decline in his cognitive ability. Severe enough to make it obvious that learning a new task or performing a new job would be a big problem. Severe enough to show that he can no longer maintain a job that requires him to retain information and complete multiple processes needed to do the types of jobs he has done for the last 35 years or so. From the standpoint of applying for disability, this is the result we wanted. It is more evidence of his need for SSDI. 

This is also more evidence that this horrific disease has begun to effect Robert. Knowing that this disease has finally taken residence in his brain and begun to cause deterioration is not something we wanted to hear. 

Now, we send this off to Social Security to add to the file in hopes that it helps show the need for approval on the first try. In the meantime, we continue to wait.

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.