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SSDI denied
60 falcon
Posted: Monday, March 11, 2019 12:32 AM
Joined: 11/16/2018
Posts: 10


Just venting here.  My DW (59) submitted her application for disability back in November (I completed the forms, gathered all the medical evidence, daily activity report, etc.) We received the denial letter about a week ago.  They say she isn't disabled.  For the life of me, I don't know how she didn't qualify for it.  I was very careful and thorough when completing and submitting all the forms, etc.  The application was done online and I hand carried all the medical evidence and stuff to the local Social Security office where they made copies and scanned them into her file.

She has a diagnosis of "early onset Alzheimer's dementia without behavioral disturbance".  I don't know what the "without behavioral disturbance" means and if that had anything to do with the denial.  In the two plus years before she got her diagnosis, she had been seem by her primary care provider, a neurologist, and a neuropsychologist.  She had lots of testing to rule out other possible causes for her cognitive memory issues, etc.  None of those docs diagnosed her with AD... Just something like depression, and some cognitive deficiencies or something like that.  I don't remember the names of the exams they put her through, but they all said there was a lack of participation on her part or something like that.  My wife always said she felt really stupid during them because she didn't know things or had a hard time doing things... So maybe she didn't fully cooperate.  I don't know.  Anyway, social security indicated that her lack of participation may have been part of their determining factors...I don't have the letter in front of me so I don't know the exact wording.

My DW finally got a diagnosis after seeing another neurologist at the Mayo clinic about a year ago.  She had a PET scan done that showed whatever it is that indicated AD.  We declined further psychological testing because we felt it would have been a repeat of the prior tests, and because my wife was already emotional, crying, and wasn't going to do more of those "stupid tests" - no way, no how.  Lol.   But, that visit was enough to get a diagnosis from supposed experts.

My DW's regular neurologist back home now agrees with the diagnosis.  She is also one of the two docs who signed the form to put my wife's medical power of attorney into effect.  (The two docs signed the form essentially saying she can no longer make her own medical decisions.). This neurologist also confirmed with me that it was an appropriate time to apply for disability for DW - that was last October.

So how in the hell can social security deny it?  By my estimation, DW is maybe stage 5.  She has good days and bad days.  She doesn't drive because she'll either get lost or hurt someone.  She can't cook without me being right there helping her, gets lost in stores, gets turned around in our on home, can't turn on the TV, usually can't answer her phone, etc, etc, etc.

My DW did attend the appointment with the neurologist that social security requested.  Once again, DW apparently wasn't able to complete all the testing.  (You know... Those tests where nobody else is allowed to be present during the testing.). So I don't really know what she did or didn't do.  So, there was another "strike against her" for lack of participation.  My DW really gets emotional, upset, cries when she has to do those tests.  They really make her feel stupid.  I always reassure DW that she's not stupid.  She's a very smart and intelligent lady.  But the AD gets in the way.  All the reassurance in the world doesn't help because she always feels "stupid" when she knows she's making mistakes or when she can't answer the questions.

I'm frustrated and feel bad because I wonder if I made a mistake in her application or something.  I don't think so, but who knows, maybe.?  So, now I'm in the process of hiring a law firm to handle DW's appeal.  What joke.  There is no job that I know of that DW would ever be able to do at this point.  She had been an Aministrative Assistant in a busy office prior to her retirement three years ago.  Right after her retirement, she had one part time job that lasted a couple weeks.  The boss and DW came to mutual agreement that it wasn't working out, so DW quit the job.  I suspect it didn't work out because of the AD that hadn't been diagnosed yet.  She'd like to still work, but that won't happen.

With all that, and the compassionate allowance for early onset Alzheimer's I was expecting my wife to be approved.  Frustrated.  Disappointed. PO'd. 


Crushed
Posted: Monday, March 11, 2019 2:37 AM
Joined: 2/2/2014
Posts: 4682


SSID is a hugely complex process.  I've been a lawyer for 43 years. I don't cut my own hair.   I hired a social security lawyer to process DW's application. Fees are fixed and low and contingent . 

I have two disabled siblings.  One is married to a judge the other was a chief librarian for a large city both hired SS lawyers and got approved immediately.

 Why do people think they can do this themselves?  It makes me crazy.  A good lawyer knows exactly how to put the package together. 

Working with my lawyer we made a chronology of decline that explained the earlier diagnostic confusion and how the later correct diagnosis was developed.  We got the earliest possible EOD.

 Good luck 

 

 


ChrisBme
Posted: Monday, March 11, 2019 8:36 AM
Joined: 2/1/2018
Posts: 60


 60 Falcon,

 When my DW (also 59) was first diagnosed I did some research and found that people applying themselves were generally rejected multiple times taking up to a couple years before finally getting their SSD. Getting a SSDI lawyer is the way to go as Crushed said. Although this might cost you the first month SSD you will get it much faster. Usually the lawyers first try. It seems that the SS administration doesn't like dealing with the lawyers because they do know what their doing. I used one and got My DW's SSD with no problems.

 BTW,  Make sure you use a lawyer specializing in SSDI. 

Good Luck!


Marie58
Posted: Monday, March 11, 2019 12:16 PM
Joined: 12/31/2018
Posts: 233


60falcon, I'm so sorry this happened. That alone is frustrating enough but you're going through a lot besides dealing with SS. I agree with the others to get an attorney. I was fortunate that ours went through without a hitch or any loss of income. I didn't get an attorney, didn't know I should have. We live in a small town and the SS office suggested I make an appointment and fill out all the forms with them. They sent me all the paperwork ahead of time so I knew what I needed to provide, then they called me at an assigned time, and the SS person asked the questions and filled in the info at his end. I can't complain but am sorry your experience turned out the way it did. Blessings and hang in there.
BeeKeeperSteve
Posted: Monday, March 11, 2019 12:28 PM
Joined: 6/7/2016
Posts: 6


60 Falcon very sorry to hear about the denial.  Here is my experience with this.  My DW had been showing signs of AD for several years, our family wasn't familiar with the disease but knew something was bothering her.  Our PCP initially diagnosed depression and she began medication for that.  While her mood improved her cognitive function did not.  I also reached out to my wife's family all of whom live on the other side of the country to let them know what was happening.  At a wake for my wife's Uncle (who I later learned passed from caregiver stress), several family members where discussing my wife's struggle.  Each shared a family story that has a terribly familiar theme.  It turns out that EOAD is almost universal among the women in my wife's mother's line.  We met with a Neurologist who gave my wife the MMSE and in less than an hour in her office she told us my wife needed to stop driving immediately and quit her job.  We were stunned.  I asked what the diagnosis was and she looked at me like I didn't know and said EOAD.  She recommended that I contact the Alzheimer's Association for the support resources I was sure to need.  Side note on the test - my wife struggled to answer many of the questions and simple gave no answer to some even though encourage to do so.  My wife is not a "guesser", if she doesn't know the answer she will say I don't know or just shrug her shoulders.  To some this could be interpreted and being "uncooperative".

SSDI - I contacted my local Alzheimer's Association chapter and within a few weeks we where is a class with three other newly diagnosed couples.  I highly recommend this class, was weekly for about 8-12 weeks, new subject matter expert each week to explain what our lives were going to be like moving forward.  Early on we had a discussion on SSDI.  There is a lot of very specific information on this available on the Alzheimer's Association's main website if you search the term "SSDI".  I read it carefully printed it our and followed it to a T.  The important factors to know on this is (1) Social Security has a classification called "Compassionate Allowances initiative" of which EOAD is listed.  My interpretation of this imitative is separate the wheat from the chaff, IE medical conditions that have well known ramification on a person's permanent disability.  (2) ALWAYS apply IN PERSON.  I did all my homework as described on the Alzheimer's Association's web site, called my local Social Security office and made an appointment to apply in person and specifically mentioned my wife's diagnosis and the "Compassionate Allowances initiative".  I showed up with all my documentation at the specified time spent less than 15 minutes in the waiting room and went in to meet a representative.  The interview lasted about 90 minutes, I could see at times that our emotional struggle with the situation had some impact on the agent.  As she interviewed us she was entering things into a computer.  At about the 90 minute mark the agent said that based on the diagnosis all follow-on interview screens were "grayed out" meaning the interview was complete (she noted that a full interview would have gone several hours more).  She was non committal as you would expect but confided that these types of situations are typically fast tracked.  Three weeks later I received acceptance of out application.  Our timeline-  diagnosis mid April, SSDI application 1st of June, acceptance 3 week of June, fist SSDI check Oct. 1st (after the required 6 month waiting period).  My wife was 60 at the time.  Two years later she became eligible for medicare this past October.

My personal opinion is that the need for lawyers for legitimate SSDI claims is malarkey.  Sadly Social Security places many barriers to receiving assistance due to frivolous claims.  If you want to go on the dole for a bad back, a trick knee, or any of the number endless maladies Social Security hears about you will likely need a lawyer and years of perseverance.  That isn't to say that a fraction of those claims are aren't  legitimate but there are a huge number of fraudsters out there.

This is not a knock on lawyers either.  Never needed one until this happened but have used several since this happened for financial planning etc. where they have been a real benefit.

I can relate to several other things you touched on in your post but this one has run on long enough.  Good luck...

 


Crushed
Posted: Monday, March 11, 2019 12:51 PM
Joined: 2/2/2014
Posts: 4682


BeeKeeperSteve wrote:

My personal opinion is that the need for lawyers for legitimate SSDI claims is malarkey.  Sadly Social Security places many barriers to receiving assistance due to frivolous claims.  If you want to go on the dole for a bad back, a trick knee, or any of the number endless maladies Social Security hears about you will likely need a lawyer and years of perseverance.  That isn't to say that a fraction of those claims are aren't  legitimate but there are a huge number of fraudsters out there.


Well to each his or her own.  Social Security Lawyers do not take cases they can't win.  As a result they are very good at evaluating and presenting cases and Social security knows that.  More importantly the lawyers love cases  where an applicant has screwed up a "do it your self" case since their fee is calculated on the BACK social security benefits.  an case won a year or two after first application can mean thousands in additional legal fees for the same work.  Most do it your selfers also do not get the benefit of early "established onset dates".  A good lawyer can present why a September Alzheimer's diagnosis actually indicated a May onset. 

But to each his or her own.


shardy
Posted: Monday, March 11, 2019 2:48 PM
Joined: 12/14/2011
Posts: 365


We didn't use a lawyer, but 6 years ago when I filed Jim's paperwork I got a lot of advice from people here.

I went in person to the social security office. The girl who did his papers moved EOAD to the second slot and put afib which he'd had for years in first. I had her change it back, but I was very nice about it. She had never heard of the compassionate allowance.

He was approved in 1-2 weeks and she called me personally to tell me he was approved days before the paperwork arrived. If he had been denied we would have then gone the attorney route..

Sorry she wasn't approved.. that just stinks. Definitely don't let it go. Either appeal or hire a lawyer to do it for you. In my state 40% are approved at first pass...better than the national average...that still leaves 60% being denied....At least when it is finally approved they should back pay.


60 falcon
Posted: Monday, March 11, 2019 9:58 PM
Joined: 11/16/2018
Posts: 10


I did lots of reading and research before making the decision to apply without a lawyer.  Seemed likely that it would be approved to me.  I carefull filled out all  forms, didn't miss anything that I know of, obtained copies of all her medical records, etc.  I figured with the compassionate allowance, a diagnosis of EOAD, medical power of attorney activated by two docs saying she can't make her own medical decisions, the daily activities report that I completed that painstakingly listed all of the numerous things she can't do, etc.

I was wrong in hindsight thinking that I could be successful on our own.  That's my fault because I'm always wanting to do things for myself.  Lesson learned.

I reread the denial letter and it looks to me like they denied it based on the results of the evaluation done by the psychologist hired by social security.  The exam results were deemed invalid due to insufficient participation.  I have no idea how to deal with that, or even how a lawyer will deal with that.  I'm not allowed to be present during those exams/tests so I can't encourage DW to try harder etc. 

Anyway, the law firm we are hiring does specialize in SSDI cases.  So, we'll see where this goes.


Iris L.
Posted: Tuesday, March 12, 2019 12:31 AM
Joined: 12/15/2011
Posts: 16107


60 falcon wrote:

I reread the denial letter and it looks to me like they denied it based on the results of the evaluation done by the psychologist hired by social security.  The exam results were deemed invalid due to insufficient participation.  I have no idea how to deal with that, or even how a lawyer will deal with that.  I'm not allowed to be present during those exams/tests so I can't encourage DW to try harder etc. 

 

Be sure to get clarification of what "insufficient participation" means.  As you see, there can be different meanings.  It is proper for the examiner to denote the patient's level of participation.  Was the participation insufficient because the patient was resistant, or because the patient has dementia?  This is what must be clarified in the medical notes before resubmitting the documents.

 

Iris L.

ButterflyWings
Posted: Tuesday, March 12, 2019 7:38 AM
Joined: 12/11/2018
Posts: 78


Thank you for this post and the knowledge shared via this thread. Is there a list of "recommended" SSDI attorneys by state that we can access? I am just starting this process having been told by our neuro psych that DH would not qualify for SSDI because he was not EO, which I learned recently on these boards is incorrect! So, several months wasted. At this point we are so financially stretched I don't even know how we will keep the lights on next month (though I know we will. I can do temp work, subbing, or whatever while also providing 24/7 care and wading through all the 36-hour day activities and paperwork, closing LO's office, etc. that we are in the midst of with this fairly recent AD diagnosis). That said, whatever "extra" funds I can scrape up, are well worth it to hire a good SS lawyer for this application. I would prefer to use someone or a firm that already worked out well for folks in this forum. Any guidance would be appreciated.
BeeKeeperSteve
Posted: Tuesday, March 12, 2019 9:08 AM
Joined: 6/7/2016
Posts: 6


The reply to my previous post "to each his own" is a spot on true statement.  I am not a subject matter expert on any of the topics discussed on the board.  My posts will only reflect my personal experiences on these topics and I would add YMMV (your mileage may vary) meaning you may / will experience something different than me.  I offer my experiences not as advice to be acted on but just a data point for those in data gather mode, use or discard as you see fit.

 Those of us who are dealing with this terrible disease before the age of 65 fall into a special category called Early Onset (EOAD).  Most people who work in this area have little experience with this form of AD.  I don't believe either our PCP or our Neurologist have another patient like my DW.  I believe that they both work with many patients who have classic AD.  They were unfamiliar with SSDI and the Compassionate Allowance list.  As someone in this thread noted even the Social Security agents may not be familiar.  I repeat that I consider the Alzheimer's Association my subject matter expert on all things AD and their information on SSDI and EOAD where my guidebook as I navigated this.  No, I have no affiliation with the Alzheimer's Association but have found them very helpful. 

 Regarding testing, my wife had the MMSE administered to her on numerous occasions by both our PCP and Neurologist.  I was always present during these tests but had to be told to be quiet while they were administered.  I didn't realize how much I had been assisting her with understanding things in our daily life.  Her diagnosis has been made solely on these test results.  In the two and a half years since she was first administered these tests she had gone from being able to answer 75% of them to answering none of them.  I suppose this could be interpreted as being uncooperative but she is a gentle soul and doesn't come off in that manner.  I have asked our physicians about many of the other tests I hear about in getting a more definitive  diagnosis and they stated those were unnecessary for my DW.  Early on we volunteered to participate in a clinical trial where much more thorough testing is administered.  We were told going into these tests that they could be hours long in duration.    I was present when they began with the MMSE and my wife's responses were below the level they needed.  I told them I was hoping for more thorough testing and they agreed to try and a different test administrator came into the room and I had to leave.  Minutes later they came out and told me no go on further testing.

 

 

 


Iris L.
Posted: Tuesday, March 12, 2019 11:17 AM
Joined: 12/15/2011
Posts: 16107


ButterflyWings wrote:
 That said, whatever "extra" funds I can scrape up, are well worth it to hire a good SS lawyer for this application. 

 

Do not pay any money up front.  The legal fees come out of your award from SSDI and is set by law.  

Iris L.



Iris L.
Posted: Tuesday, March 12, 2019 11:51 AM
Joined: 12/15/2011
Posts: 16107


BeeKeeperSteve wrote:

 

 

 Regarding testing, my wife had the MMSE administered to her on numerous occasions by both our PCP and Neurologist.  I was always present during these tests but had to be told to be quiet while they were administered.  I didn't realize how much I had been assisting her with understanding things in our daily life.  Her diagnosis has been made solely on these test results. 

 

In the two and a half years since she was first administered these tests she had gone from being able to answer 75% of them to answering none of them.  I suppose this could be interpreted as being uncooperative but she is a gentle soul and doesn't come off in that manner.  

 

------------------------------------------------------

The MMSE is supposed to be a starting point, not an ending point.  The MMSE is supposed to alert the doctor that further evaluation is indicated.  This is to search for medical mimics of dementia, which may be reversible if caught in time.  Medications that effect cognition should be stopped.  Psychiatric disorders should be searched for.  If no further testing or evaluation was done, that is not acceptable.

 

Iris L.

 

 



eaglemom
Posted: Wednesday, March 13, 2019 8:40 AM
Joined: 3/7/2012
Posts: 2356


You definitely need to file an appeal. Many others before you have been denied, but upon appeal they've been approved. It can prove to be a time consuming process. 

Personally I hired an eldercare attorney to handle DH's case. I knew I could have done it, but for me at the time it was too much to handle. DH's case was approved very quickly.

eagle


ButterflyWings
Posted: Wednesday, March 13, 2019 10:21 AM
Joined: 12/11/2018
Posts: 78


Iris L. wrote:

Do not pay any money up front.  The legal fees come out of your award from SSDI and is set by law.  

 Thanks Iris L.! This is good to know, and a huge relief.

BadMoonRising
Posted: Wednesday, March 13, 2019 9:18 PM
Joined: 4/22/2017
Posts: 263


The documents you submitted need to include clinical information that clearly supports the diagnosis of AD.  See, for instance,

https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022385

We all agree a claim for benefits based on EOAD should have been a slam dunk. But, did SSA have the clinical info, including MMSE scores, BEFORE your wife was referred for a neuro eval? Did the completed activity report support the diagnosis? I ask the latter because I've reviewed a good number of activity reports that included language that actually supported a decision to deny benefits.

Here's the deal. Although it is generally difficult to obtain a reversal at the Reconsideration stage, a win at that level could cut off years of waiting for a scheduled administrative hearing and receipt of the decision.

Someone needs to review the info in your wife's SSA file. Even though you may be her representative, I suspect the local office may still refuse you access to her file. If that happens, you will most certainly need to hire an attorney representative.

Also, call your local congressional representive. My experience is that the local congressional offices have a designated employee move these SSA cases along.


60 falcon
Posted: Friday, September 20, 2019 9:22 PM
Joined: 11/16/2018
Posts: 10


Success.  DW was approved finally for SSDI during the reconsideration phase.  She received 2 years "back pay" and just received her first monthly check. It was a totally frustrating experience for us, but it worked out well in the end.  It seems that the hold-up was because three different doctors who evaluated her felt that she wasn't fully "participating" during the evaluations.  I had no first hand information because I was never allowed to be present during the evaluations.  So I didn't know if she actually wasn't participating, or if she actually wasn't capable of participating/answering questions.  I had the opportunity to sort of discuss this with the Dr who evaluated her last.  Her attorney that we hired to help said that this situation wasn't common.  He believed she met all the criteria for being disabled but those doctor's remarks of "lack of participation" seemed to be a problem.

Anyway, that's behind us and she's officially disabled, sad situation but happy.?.  Medicare begins in Nov.


BadMoonRising
Posted: Friday, September 20, 2019 10:28 PM
Joined: 4/22/2017
Posts: 263


Congratulations!

shardy
Posted: Friday, September 20, 2019 10:33 PM
Joined: 12/14/2011
Posts: 365


Glad to hear that finally worked out.
Katy sue
Posted: Saturday, September 21, 2019 5:50 AM
Joined: 9/24/2016
Posts: 307


This is such a crucial thread , especially to EOAD patients and their families. Getting that SSDI is a lifesaver to so many whose work abilities have basically gone in the tank, therefore impacting income to a devastating level. I hired a lawyer with considerably great reputation. I also did most of the writing and used in depth cause and effect writing to explain. Basically I used key words that I knew SS needed to see in order to approve. I got key word info from online research on how to use appropriate wording to win a case. I was told by the worker who decided on the case that she had never read an application that had so much detail in it.  I know I did more work than the lawyer did, but I got his stamp on the application. I could not afford to lose the first time around as we would have been completely without money. We were that far gone, yes.

Thankfully you have been approved. You will win many battles along the way, in ways you never dreamed of. Depending on how you view things. 


markus8174
Posted: Saturday, September 21, 2019 6:15 AM
Joined: 1/25/2018
Posts: 535


Try not to be discouraged. Almost ALL applications for SSDI are "denied" on the initial application. Filing an appeal is required. I didn't even bother filing my own initial claim since the denial rate for SSDI is higher for applications not filed through a lawyer. The fee for my lawyer was 25% of the owed benefits from the time of disability to the date of approval of the claim. I had been off work 9 months. There is some gap built into the system so my benefits were only in arrears about 6 months. My lawyer got the equivalent of  about 1 1/2 months benefits. Please be aware, SSDI provides a social security check, but Medicare doesn't start for 24 months after becoming disabled.
Crushed
Posted: Saturday, September 21, 2019 11:18 AM
Joined: 2/2/2014
Posts: 4682


markus8174 wrote:
 Please be aware, SSDI provides a social security check, but Medicare doesn't start for 24 months after becoming disabled.

You  are correct but she did state Success.  DW was approved finally for SSDI during the reconsideration phase.  She received 2 years "back pay" and just received her first monthly check  

 So her disability onset date is over 2 years ago


PaulsWife
Posted: Sunday, September 22, 2019 8:53 AM
Joined: 3/1/2017
Posts: 56


I must have been lucky because DH’s SSDI was approved based on the initial application. I filled out the papers and included a neuropsychological evaluation specifying Alzheimer’s. I believe I also had to provide his neurologist’s contact information. I was very careful to always use the term “Early-Onset Alzheimer’s Disease” so it would match the terminology on the Compassionate Allowance list. SSDI didn’t do any independent evaluation though they may have contacted his doctors. It was approved within a couple of weeks.
Crushed
Posted: Tuesday, September 24, 2019 9:18 AM
Joined: 2/2/2014
Posts: 4682


The key barrier I had was that DW was still a licensed physician and on the Federal payroll on Sick leave.  Many people (including lawyers)  assume you can't get SSDI if you are still employed. But that is not the legal requirement, you have to be able to actually work.  So we submitted to SS the documents we sent to the licensing authority that she would not do any practice of medicine that would be affected by her disability. We also submitted her sick leave documents.   Social security accepted that she was employed but not working and their Industrial Psychologist determined that there was no work she could do in the national economy.  She was approved 2 weeks later backdated 3 months. She remained on sick leave with the federal government for 13 more months and then retired on disability.  This was a difficult case and the legal fees were trivial to the result.