We Have A Decision (sort of)

When you get an email from Social Security saying they have an update for you, you open it with a little trepidation. Especially when you get the email around 11:30 on a Saturday morning. 

You take a deep breath, say a prayer and pull up the website, not sure what to think

But, then you see this...

Do you see that word in bold under the blue line? That word that says APPROVE? That's right! They made the decision to approve the application.

Huge relief!

So, what's next?

In 10-15 days, we will receive a detailed letter that explains the decision. This will tell us when the payments will start and how much they will pay each month. 

The day that payment begins is determined by the day the Social Security determines disability actually began. For Robert, was this when he checked himself into the hospital (November 30th), the last day he worked (December 20th) the day we officially filed the application (January 29th), the day Social Security began reviewing the application (February 17th), the day we saw the neuropsychologist (April 16th), the day they approved the claim (June 25th), or some other random day SSA decided on? The day is important. 

Payments will begin five months from the day it is determined that disability began. It is honestly an arbitrary decision based on what the person reviewing the application decides. The letter we receive should provide that date and the amount received each month. So we wait.

Regardless, this is a huge answer to the prayers of all of the family and friends over the last few months. While we haven't reached the end of this process, we can honestly say that we now see that light at the end of the tunnel and know that we will make it though. 

More updates to follow... 

Is No News Really Good News?

An update on our application for disability benefits, such as it is. 

If it normally takes about 170 days, we should have our results around August 6th, just over two months away. Based on when they first started the application to the progression today, it looks like things are right in line with that timeline. Since they do not provide any real information, though, until the final determination has been bad, we have no real idea what is really going on. Robert and I are not the most patient of people so the waiting game is frustrating.  

At least we know that progress is being made and we have no new requests for more information. So, does that mean they don't need any more information? Does this mean the information they have provided is enough to make a favorable decision? Is not hearing anything a good or bad thing?

Nobody really knows the answer but the person who has been assigned to Robert's request. So, we continue to wait until we hear more information. There is not much else that we can do. We go about our lives as we have been since we first filed the application and continue to pray for God's favor and a ruling beneficial to us. 

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 Process

The process for applying for applying for Social Security Disability has changed a bit from when we did it for Robert's brother Bill ten years ago. 

Ten years ago, Robert and Bill had to go to the Social Security office and fill out a bunch of paperwork and take documentation to show why Bill couldn't work. 

Today, you fill out an application online. 

You have to give the names of your doctors, give medial release for Social Security to contact those doctors, provide details of any tests you have done and even list jobs you have worked at for the last few years. It's a lot.

It can also be very overwhelming and very time consuming. It is also frustrating because in multiple places, you have to repeat yourself. You have to say the reasons that you think you deserve to be approved for SSDI. 

Ww have given medical release. We have lists his doctors. We have told him when and where he got his MRIs. We have all of our documentation showing the affects HD has had on his brain. We have a letter from his last employer explaining the problems Robert had learning the new job. 

Once it is all complete, you wait.

They say it can take up to six months before you hear anything. 

The chances of being denied the first time are pretty high. If you are denied, you can appeal the decision.

There are three levels of appeal. 

The first appeal can take 3 - 4 months before a decision is reached. 

The second appeal can be 18 - 24 months to make a ruling.

The third appeal can be another 18 - 24 months. 

If you are denied then, you start all over with a new claim and wait yet again. 

When it comes to Huntington's Disease, it is not uncommon to be denied numerous times. 

We pray we only have to file the initial application and its easily approved. 

Updates will be provided as we have them. 

Victory!

With the passing of Robert's grandmother taking place a couple of weeks ago, I haven't had the chance to give an update on the situation with Bill and Social Security.

To begin with, a couple of weeks ago, we got a letter detailing the judge's decision.  She agreed that Bill was unable to work and would be awarded disability income. Woohoo! Secondly, she said the date he became disabled was a date in 2004.  Basically, she said he was unable to work for nearly 7 years. So, the next question was how much he would get in the way of back pay.  For that, Bill and Robert had to meet with the Social Security office to determine the amounts he would be awarded.  This is where the whole thing got a bit frustrating.

It started when we got a letter from their office saying that Bill and Robert needed to come to their office on at 2:30 on Thursday, July 12th.  And they needed to bring any pay stubs that Bill had dating back to October of 2010 - when he first applied for Social Security.  Hello people! He filed because he can't work - how is he going to have any pay stubs for that time if he couldn't work? And, considering that Robert got this letter the Thursday before he was to meet, there was no way he could get the day off since the schedule was already written. It did say he could call to reschedule and so he figured he would do that first thing Monday morning since he would be too busy at work to call them on Friday.

Now, fast forward to Sunday.  We got the call that Robert's grandmother had passed so there was no way they could possibly make it on Thursday since that was the day of the viewing and the funeral was on Friday, in Cleveland.  So, Monday morning, Robert calls the number.  And waits on hold for over half an hour! He finally had to hang up because he needed to make some other phone calls so we could make arrangements to head off to Cleveland.  Very frustrating to say the least.  He finally got a hold of them on Tuesday morning and explained the situation - we were in Cleveland and wouldn't be able to make it on Thursday.  The lady he talked to made note of it and said it was no problem.  They could just come in whenever and it would be taken care of. The lady must have forgotten to update the appointment notes though because they blew up both Robert and I's phone during the viewing because Robert and Bill missed the appointment. It was a bit of a pain to say the least.

So, Robert and Bill finally get to the office last Monday. They were taken without an appointment which was very nice. However, I am not sure they had it all together. Robert and Bill were called to an office to meet with someone only to be told that everything wasn't ready and sent back to the waiting room to wait some more. Finally, after a couple of hours, they were called back to the office a second time where details were given - or at least some details.

First, Bill will get a check in the amount of $590 a month.  Much better than what we were originally told - around $300 a month. Secondly, he will get a second check each month - SSI.  But nobody would tell us that amount.  So how much is it?  We hope to find out next week when he get the first check on August 1st.  Third, he will also be getting back pay. And it will be in 3 lump sum payment checks.  One in the next few weeks, one 6 months later and one 6 months after that.  But they never gave the actual amount.  Only the amount of the fist check. The only thing that was really said about these checks is that the fist 2 would be direct deposit and the last one would be a paper check because it was too big to do direct deposit. However, it is hard to make plans for his future if we do not know the full amount of money he will be getting on a regular basis or if the lump sum checks will be enough to buy him things like the new clothes he needs as well as furniture for wherever he will be moving to.

The best news of the day, though, had to do with Medicare. Normally, when applying for Medicare coverage under the diagnosis of HD, a person has to wait 2 years before the coverage kicks in after being approved for Social Security disability income. However, because he had been waiting so long for approval, his Medicare Coverage actually started July 1st.  That is great because that means he can begin some of the necessary medications and treatments to help him live a more comfortable life as he progresses in his disease.

So, we got some great news! And now, we can begin the process of finding Bill a place to stay. Preferably a place that will offer assisted living for someone on a fixed income so that the can be checked on on a regular basis and be provided any extra help that he might need. The social security office did provide Robert with a place that might be able to offer assistance so that we can move forward.

A Day in Court

Bill had his day in court today and only spent about 10 minutes in front of the judge!
Of course, we don't know the answer yet - that takes another 30 days but the lawyer thinks the judge will rule in Bill's favor.
As a refresher, I am referring to the long drawn out process began over a year ago to seek Social Security Disability and has been detailed in previous blogs. HD has robbed his ability to hold down a job and he needs income to support himself. And what a long process it has been.We knew it might be difficult. We had read the stories of denial after denial by many, but also saw how easily the approved coverage for Debbie, so it didn't seem like it would be that hard. We really had no earthly idea it would still be ongoing over a year later. However, today could be considered some real progress.

Today, Bill had an appearance before the judge. We found a lawyer recommended by the Social Security office and he was there with Bill and Robert. I have to commend the guy. He did a lot of research and took time to familiarize himself with the disease so he knew what to expect. Of course, he only gets paid if there is an award to Bill so the effort would work in his favor. He prepared a lengthy brief that defined the disease and talked about the issues Bill was facing. He even included copies of both Robert and Debbie's test records showing the heredity pattern. The court has a vocational expert they use to aide in the decision that was with them via speakerphone. This person makes a statement based on asking a few questions of the person seeking coverage and the paperwork that has been provided to him. This expert basically said that Bill could not work for more than 10 minutes at a time and could not function in a normal work environment. The judge seemed to agree and accept this guy's statement and said she would review the information. They spent 10 minutes in front of the judge! Seriously!!!
Now, the judge will review the situation and issue a ruling. This process usually takes 30 days. And then it will take a week or two before Bill sees the money or we move back to the starting line. The lawyer thinks she will rule in Bill's favor because she seemed to agree with the vocational expert. We shall soon see. Of course, there is no guarantee and now we must wait a bit longer, but the chances of an approval seemed to have improved considerably. I feel for the many others that have had to wait for so long and still have not been approved. I hope it all works out in Bill's favor.
I just can't quite believe that we have had to wait for all this time since the process started and the judge is making a decision about Bill's future based on a 10 minute conversation.

And the battle goes on

I have read the stories of others with HD who are fighting for approval for disability coverage from the Social Security Administration. It is not an easy process at all. Many are denied time and again and some do not even get approval before the die as a result of complications from the disease. So, I don't know why I was surprised that we are still fighting through the process two years later. I guess because it didn't seem to take Debbie any time at all to obtain coverage. Hopefully, that would be the case with Bill. Boy was I ever wrong. The first time we requested benefits for Bill was early to mid 2010. Yes, 2010. Roughly two years ago! And we are still fighiting. The first request was deneid because he didn't exhibit "symptoms" of the disease. Same reasoning behind the second denial. Of course, given the outdated definition of Huntington's Disease that the Social Secuirty Administration has, it really isn't that surprising. But that is a blog from another day, and one to follow up on in the future. He may not exhibit the jittery uncontrollable movement (or chorea), but he has decreased mental functioning that would be needed for him to hold down a full time job. Reality is that he is unable to work. He needs assistance from Social Security to be able to live and get medications that will help lessen the symptoms and prolong his life. Suddenly, I understand what it is like for all of these people that I have read about. This whole process is emotionally and mentally draining and very frustrating. Especailly when all of us familiar with the disease know what the disease is doing to his body. Hopefully, that will soon change because we have been given a court date for our third chance at getting approval. On Wednesday, June 28th at approximately 1:30 pm, we will find out if the lawyer that we have hired will earn a paycheck or not. Since he only gets paid if there is a settlement, there is a huge incntive for him to work hard on this case. And I certainly hope he does. I hope he has worked enough to earn a paycheck and gets Bill approval so that he can get on with his life and begin using some of the medications that will help him live with HD. And maybe by the time we have to begin thinking about Robert filing for disability coverage, it will be a much smoother processs.

Is a Lawyer The Way to Go?

We have received the second denal letter from Social Security telling us that they have denied Bill's request for benefits.  Something about not showing signs of the disease.  Must be the whole misunderstanding that the Social Security Administration has about the disease, but that was another blog...
So, we have filed an appeal yet again.  This time, it is the request for a hearing.  Basically, the case goes before a judge and he will decide Bill's fate. When the hearing will take place is anyone's guess. Current backlog is averaging about 364 days, according the Social Security Administration website.  I sure hope it does not take that long.
The decision we have been wrestling with in this appeals process is if we should get a lawyer for him to appear at the hearing. SSA even provides a list of lawyers to contact if interested. And they are free of charge if you don't win a settlement.  Sounds like a good deal.  A lawyer will take the lesser of 25% or $6000 of the back pay that is awarded to the person. Back pay is usually the amount the claimant will receive each month back dated to when first filed or another date the judge decides on.  Sometimes, the judge will decide no back pay.  It is the judges opinion of when the conditions really set it that make the person disabled and unable to work.
Using the premise that Bill will get back pay from the date the first request was filed - approximately one year ago - and the estimated monthly amount we have been told he will receive of $640, the lawyer could get roughly $2000 if the claim was approved today. Then, when you factor in that the average processing time from when a hearing is requested to when the hearing takes place is approximately a year, you can pretty much double that amount.  For a person that will have to set up some sort of living arrangements and buy many of the basics that a person needs, losing that amount will not be easy for deal with. 
On the flip side, if he does not win the case, then the lawyer gets nothing. Basically, he takes the case for free. So, it does seem like a good idea, right? If we lose, we lose nothing. We have nothing less than what we started with. Plus, most lawyers will not take the case unless they are confident the judgement will be favorable for the claimant.  They aren't going to take a case that will not get them a payout of some kind.  They want to make money just like everyone else. And a lawyer will take care of making sure all the paper work is filed, all medical information is received and anything else that comes up.
So, maybe hiring a lawyer is a good idea.  It will make things a lot easier and give us an advocate that wants to win for us but also understand the laws and knows if we really have a case or not. Granted, it will cost if the settlement is won, but isn't it better to get something than nothing at all? And the consultation is free, so if the lawyer doesn't think you have a case, then he doesn't take your case on. 
Now, how to pick the lawyer... 
Actually, that part is pretty easy.  In the paperwork that is sent confirming the request for a hearing, the Social Security Administration provides you with a number to contact someone.  You are then directed to attorneys in your area.  So, we have contacted an attorney.  Now, we wait and see what he thinks and how long it takes to get the next phase of this lengthy process started.