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Early Onset and Disability
angieob1968
Posted: Thursday, December 3, 2015 6:31 PM
Joined: 6/22/2015
Posts: 1


My husband who is 54 has recently been diagnosed.  We applied for disability and were denied!  He works 12 hours a week stocking light bulbs at a local store.  He has a college degree and worked as a banker for 25 years.  How can disability get denied with this horrible disease? He makes 9.00 an hour and we are beginning to drown in debt.  We recently hired a lawyer but he didn't seem to think it was a slam dunk case.  He said if he can do the job that a monkey can do, he's not disabled.  I said ... huh??? Anybody else been in this situation?  I am 47 and raising 2 kids at home too.
Iris L.
Posted: Thursday, December 3, 2015 7:03 PM
Joined: 12/15/2011
Posts: 17580


Welcome, angie.

The Social Security Administration (SSA) has added early onset/younger-onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The Alzheimer's Association, a longtime advocate for those with early onset Alzheimer's, has played an integral role in this movement to reduce the length of disability decision process. 

http://www.alz.org/living_with_alzheimers_social_security_disability.asp


A person cannot receive SSDI while still employed.  When applying, the applicant is stating the he is not capable of being employed due to disability.  In your husband's case,  he IS capable of finding employment, but not at his previous level.  

With private disability insurance policies, there is a policy that pays if you cannot perform your usual occupation.  But with SSDI, they will pay only if you cannot perform any regular employment.

How is he doing at the low wage job?  Is he at risk for being fired? What exactly is his diagnosis?  Was he fired from being a banker? 

My thoughts would be for him to continue on this job until it is too much for him, and he begins to get warnings.  Then for him to go on short term disability and pursue long term disability. Possibly with this low wage job he may not have short term disability benefits.  Discuss this with the attorney.

Also, you will have to make MAJOR adjustments in your financial affairs.  Read the financial section of alz.org.  You may have to downsize your home.  Are you working?  You may have to work full-time and have someone else watch the children, if they are not in school. 

If you write back with more information, we can give you more advice.  Also, I suggest that you visit the Spouse/Partner board.  There are members there who can give you advice based on their own experiences.  Please invite your husband to join us patients on this board.

Iris L.


elainechem
Posted: Friday, December 4, 2015 9:46 PM
Joined: 7/30/2013
Posts: 6038


If he is capable of earning a certain amount of money per month, than he is not considered to be disabled, whatever his diagnosis is. Here is a link: 

https://www.socialsecurity.gov/OACT/COLA/sga.html

If his disability forces him to stop working, or to work less so that his earnings fall below the substantial gainful activity amount, then he might be approved. NEVER quit your job just so you can qualify for disability. 

It looks like your hubby earns way less than that, so I don't get it. Approval also depends strongly on them getting the best, most recent medical records that prove his diagnosis. What kind of a doctor diagnosed him? How was he diagnosed? What testing did he have? 

I hope you appealed the denial. My hubby was denied the first time because Social Security never received a copy of his neuropsychological test results. You have to keep on top of them to make sure they have all of the medical records. 


TayB4
Posted: Saturday, December 5, 2015 8:39 AM
Joined: 8/8/2014
Posts: 886


My husband was denied the first time we applied even though we had neuropsych evaluations and doctors notes recommending that he apply for SSDI because he could no longer work. I believe the denial may have been in part due to the fact that he was diagnosed with MCI, not Alz. We appealed on our own (no lawyer) and included an additional letter from his neurologist saying that his memory impairment made it impossible for him to sustain gainful employment. I think that is a key phrase. Earning $9 per hour when you used to be a banker is not gainfully employed. I also had a copy of an email from a supervisor that was letting him go from a temporary position because he couldn't learn new procedures. This also was key. My husband was let go from 4 jobs before he applied for SSDI. This showed them that he had attempted to work (one was even a part time grocery job-my husband had been an engineering technician). I would definitely appeal, gathering as much information as you can. If you don't, you will have to refile later and start the process over. Oh, and I would get a different lawyer. Any person who refers to a job as "something a monkey could do" is heartless and disrespectful, and not a quality person in my mind. Best of luck and keep coming back. These boards have been vital to my sanity.
Iris L.
Posted: Saturday, December 5, 2015 4:30 PM
Joined: 12/15/2011
Posts: 17580


My understanding is that it is better not to start over, but to continue with your appeals.  There is a process already in place.  Discuss with your new attorney.

Iris L.


MichelleO
Posted: Wednesday, December 9, 2015 5:39 AM
Joined: 4/7/2015
Posts: 482


We were told that if DH could roll plastic sliver wear with napkins he is not disabled. He has to be completely unable to work ANY job. Social security does not care if he can't work (and make money) like he once did. My husband who was a CPA working as a Controller for huge corporations could NOT do a bank teller job. He was fired. He received the diagnosis vascular dementia which made him eligible for the "compassionate allowance" with social security disability. Throughout his medical notes it states he is unable to work, any job. We had a lawyer and it went through in less than 2 months. Would have been sooner but got caught up in a regional review. 

That said.... It is absolutely crushing to anyone to be told by multiple medical professional "you can not work". He had been trying for 3 years to work as a CPA and failed time and time again. Now we know why. This disease robs you of your identity. Some seem to be able to build new ones... Some not. 

Good luck. Financial stress is terrible

 


Iris L.
Posted: Wednesday, December 9, 2015 3:34 PM
Joined: 12/15/2011
Posts: 17580


MichelleO wrote:

This disease robs you of your identity. 



We patients on this board are proactive in our own treatment and in trying to deal with the stigma of having a diagnosis of dementia.  We do not believe that dementia robs of our identity.  We are still the same people.  We may lose many things, but to say that we don't have an identity is a demoralizing statement to patients.  This is like saying we have no value.  We want to maintain our dignity, and look to our family members to help us in maintaining our dignity.

Iris L.

 



Michael Ellenbogen
Posted: Wednesday, December 9, 2015 4:43 PM
Joined: 11/30/2011
Posts: 4036


Iris - I am not sure I agree with you on this one. I do feel it stole my identity. I can no longer be the person I was and want to be. I have adopted to something less then what I want to be and with no choice. I can sure tell you  I don’t want to be the person I have become. My daughter and my wife will say I am no longer that same person. I have to agree. They don’t mean it in a negative way but it is very real. I would think if we think that way we are in denial.

 


llee08032
Posted: Wednesday, December 9, 2015 8:55 PM
Joined: 5/20/2014
Posts: 4408


To say we are robbed of our identity does pack a punch. We may not be the same but it does not mean we are not who we are. I'd certainly like to think the essence of my person and being will be until the end. That what I did and contributed to this world and others will still matter to me and those who love me even when I cannot contribute in the same ways anymore. We are still here and will still be here until we stop breathing.
Mac50
Posted: Saturday, December 19, 2015 7:21 AM
Joined: 10/1/2015
Posts: 616


I think we must find new identities.   AD robbed me of my identity and I don't have the disease. On a note on SS Disability. We didn't get a lawyer and were approved in less than 1 month but my DH didn't work for over 2 years prior.  This is where the medical community hurts us going through this process.  My DH tested 30 but couldn't read a profit and loss statement so he couldn't work in his prior career.   I couldn't get a diagnosis. He wanted to work as a stock boy but I said no....mainly because if he worked at minimum wage it would cost us more in gas and other expenses......and like stated earlier you have to be incapable if working to get Disability 

It took two years to get a AD diagnosis and as soon as we had that Disability was easy.   Problem - we only received  one year of bask SS so we lost one year of income. 

Maybe when I finish this journey I will write a guide of all the things they don't tell you when you get a MCI diagnosis.  


Michael Ellenbogen
Posted: Saturday, December 19, 2015 7:54 AM
Joined: 11/30/2011
Posts: 4036


I already have much of what you talk about in my book written by a lawyer who specializes in SS.

 


llee08032
Posted: Saturday, December 19, 2015 8:32 AM
Joined: 5/20/2014
Posts: 4408


I think we must find new identities.   AD robbed me of my identity and I don't have the disease.


Mac50

Surely you read some of the posts and saw that some of the persons with dementia here on the patient board were unappreciative of the reference about us losing our identities. I can tell you there are some courageous persons here with strong identities on our board that have not been lost. Please be mindful and respectful of how such statements can impact persons with dementia and what you say here on our board. 

Michael Ellenbogen
Posted: Saturday, December 19, 2015 8:50 AM
Joined: 11/30/2011
Posts: 4036


I tend to agree with you llee08032. While for us we had no choice and we can not rebuild that is not the same for those who are temporary impacted such as caregivers. I see the impacts it creates on them but they sure bounce back once it is over. I wish I could. I so wish it was a 10 year bump in the road. While I lost my identity I created a new temporary one which has accomplishes some amazing things. Life is not over but it is also not the course we may have chosen. I have always been able to plan my course and in full control but now my course is being planned by AD. I will have many new identities along the way. We should all find a way to live life to the fullest as we progress until we feel it is not far us any longer.    


Iris L.
Posted: Saturday, December 19, 2015 3:18 PM
Joined: 12/15/2011
Posts: 17580


Life is about growth. We grow into new identities, or perhaps new forms of our old identities.  We never lose our identities.

All the time, other people want to define us--tell us we are nobodies.  Why?  

This is why I don't disclose.  I am satisfied with myself, but I cannot handle the onslaught of hostility and ignorance by others.  Life is too short.

Iris L.


Michael Ellenbogen
Posted: Saturday, December 19, 2015 4:37 PM
Joined: 11/30/2011
Posts: 4036


I believe you are lucky Iris. Not sure if you see it as I do. You became a doctor to help others. While your identity had been taken away as being able to do that job. You have still landed on your feet because of what you do in this forum. You have been lucky to still do what you always wanted. You probably still thrive because of being able to do that.  You help so many here with your wisdom and that is great. I only wish I could feel the same as you and many of my other friend with AD .

 


Iris L.
Posted: Sunday, December 20, 2015 12:53 AM
Joined: 12/15/2011
Posts: 17580


I became a doctor because I wanted to make a difference in people's lives.  I try to make a difference in people's lives on these boards, by sharing my experiences and hopes.  

I truly believe we can ALL make a difference in the lives of those coming after us.  We have already proven it on our two patient boards.  We all have something to contribute.  

I have gained so much from those who post here, including you, Michael, I can't even list all of it.


Iris L.


Mac50
Posted: Sunday, December 20, 2015 10:39 PM
Joined: 10/1/2015
Posts: 616


Iris   I am sorry if you took my statement wrong.   Loss maybe is the wrong word ... We must change our identity ......  I know this is true for the caregiver and for my DH. 

Also because you were in the medical field maybe you were diagnosed early.........

 


Iris L.
Posted: Monday, December 21, 2015 2:36 AM
Joined: 12/15/2011
Posts: 17580


Mac, being in the medical field did not help me in getting any of my multitude of diagnoses.  In fact, being in the medical field hindered my medical care.  My field was pediatrics, so I was not as familiar with the conditions that afflict older adults.  


My former colleagues made my life miserable.  I posted many a thread on how miserably I was treated, going through the diagnostic processes for cognitive issues.  Basically, they said I was malingering, which is the medical term for faking.  I was not faking.  I really lost my memory.  I had amnesia.  It was only years later that I learned the term, amnestic MCI.  Obviously, those doctors who made my life miserable never heard of amnestic MCI.


It still irks me, how I was treated.  As badly as I was treated, I know many other early stage patients are treated the same, or even worse.  They do not have the benefit of the support from this message board.  It was an educator from the Alzheimer's Association who encouraged me to be persistent in seeking answers for why I had so many warning symptoms.  She was God-sent.


Iris L.


BillBRNC
Posted: Monday, December 21, 2015 9:17 AM
Joined: 12/2/2015
Posts: 1018


A bunch of messages yesterday made me think of something, which I forgot about, but reading this made me think of it. The driving car issue. In some places the doctors are forced to report people who they diagnose with Alz. Now, I can imagine that they don't really like to get caught in the middle of that. Same, I doubt they want to get sued for not reporting or doing something. I think this might just spread out into many areas, and that doctors might not want all the grief from diagnosing Alz, so they call it progressive MCI or someother type thing. I'm not picking a fight with doctors, as my wife is one, but I know a tad about how they think, even if they don't understand me problem.
Michael Ellenbogen
Posted: Monday, December 21, 2015 9:28 AM
Joined: 11/30/2011
Posts: 4036


 That is exactly why many doctors will not say it AD. It benefits no one in their opinion. The laws suck as they are forced to do all this extra paper work when they know its AD. If we want to know the real stats of who have the disease we need to change that state rules for knowing our condition. So much fir HIPPA. I believe its like 2 /3 of them have that requirement.

 


Peter5
Posted: Monday, December 21, 2015 12:40 PM
Joined: 5/30/2013
Posts: 1194


The whole disability issue comes down to having your medical records in order, and medical professionals supporting the diagnosis.  If you are working with physicians that are being "wishy-washy" about a diagnosis, then find new ones.  I think many medical professionals think if you simplify the task enough, then the person with AD can still do it indepently and successfully.  This just isn't true, and shows the lack of understanding that exists about dementia, even among medical professionals.

Yes, our LO's were able to perform many ADL's for a long time, but rarely without prompting, monitoring, or assistance.   


BillBRNC
Posted: Monday, December 21, 2015 12:54 PM
Joined: 12/2/2015
Posts: 1018


Ditto to Peter. When I was diagnosed 6 years ago with dilated caredio myopathy, I read up on the SSD stuff. Somewhere I don't remember where I found of list of SS stuff that set forth the presumptive disability stuff. If you met one of the goldies, then you were automatically disabled for SSD. For heart failure, an ejection fraction of less than 30 was presumed disabled. Mine was 10, so no problem there. My application was approved in two weeks from the time it was sent in, with the med records of course. I bet that was a record, because I've never heard of it happening, although the region of my state is known for staying current, so that helped mostly. I would not be surprised if much the same thing exists for early onset Alz. Those with regular onset almost surely are already getting full SS anyway. I also got Medicare 6 years ago, but I'm now switched over to non-SSD Medicare. I'm not sure there is a difference, but I did have to get a new med supp and drug plan, or at least I had a chance to, which I did because the cost drops when you turn 65 and aren't on SSD Medicare. Yes, paperwork in order is a must, but someone should know if Alz or dementia falls into the presumption category. By the way, my ejection fraction improved enough to get off the transplant list, but I still would qualify, but regular full SS is just around the corner for me anyway.
Crushed
Posted: Thursday, December 24, 2015 5:30 AM
Joined: 2/2/2014
Posts: 6830


Iris L. wrote:

A person cannot receive SSDI while still employed.  When applying, the applicant is stating the he is not capable of being employed due to disability.  In your husband's case,  he IS capable of finding employment, but not at his previous level.  


I just saw this and it has a small but important error. The disqualification is not being "employed" but in fact "working"  e.g. a persons on sick leave is employed but not working 

Many people make this mistake and exhaust sick leave before applying for SSDI.

DW was on SSDI and Sick leave at the same time for a year

 


Athos3m
Posted: Thursday, December 24, 2015 10:45 AM
Joined: 12/7/2014
Posts: 49


I also strongly agree with Peter.  An additional concern pertains to private or group disability insurance.  When doctors avoid properly diagnosing patients they can rob them of the information needed to successfully apply for additional disability insurance as well.  Often early onset patients follow a  long, painful path to dx which includes losing long held jobs and careers.  Good luck filing for group disability from that job you were fired from two years ago because you were no longer able to function at the necessary level.
Crushed
Posted: Thursday, December 24, 2015 11:37 AM
Joined: 2/2/2014
Posts: 6830


DW's doctor called Cognitive impairment typical of Alzheimers  which satisfied social security.  They did have their own Ph.D psychologist administer an hour long batter of tests were were enough to get approval in two weeks., backdated 11 months..
Crushed
Posted: Thursday, December 24, 2015 11:48 AM
Joined: 2/2/2014
Posts: 6830


MichelleO wrote:

We were told that if DH could roll plastic sliver wear with napkins he is not disabled.

e

 


For DW the key was that she could not independently get to any job.  She could not drive or take a bus without an attendant. 

moonlight1232
Posted: Saturday, December 26, 2015 6:00 AM
Joined: 12/26/2015
Posts: 2


Hi.. I'm new here but I do have something beneficial for yo

GET A LAWYER !!!

They (SSA ) denied me 2x..  After that I got a lawyer for disability.. They put me thru hell

When they (SSA) send you to THEIR doctors, the Doctors WORK FOR SSA.. It is THEIR JOB TO DENY YOU.. 

The judge for SSA put me thru the wringer as if I were some criminal..

I was also out of work nearly 3 years.. I had worked in a hospital and after "losing peoples' bood and driving down the highway in the wrong direction I decided something was VERY WRONG with me..

Long story, short.. Went ot the hearing on a Wednesday (Judge ) On Thursday SSA called me for my finanicial information and on Friday the "back pay" was deposited into my checking account.. Freinds told me IT IS THE LAW, (part of the SSA criteria) that DEMENTIA is a reason to be automatically accepted.. (I did not know that at the time)

I had been seen by my own Neurologist who told me husband that SSA was being ridiculous..

GET A LAWYER.. 

I could write a book about the (SSA) acts, which border on criminal activity


llee08032
Posted: Saturday, December 26, 2015 8:05 AM
Joined: 5/20/2014
Posts: 4408


Welcome Moonlight,

Sorry you had to go through so much bull crap to get your disability benefits! Looking forward to getting to know you.


Michael Ellenbogen
Posted: Saturday, December 26, 2015 9:16 AM
Joined: 11/30/2011
Posts: 4036


 Welcome  moonlight1232, Glad to hear from you. The people at AA will answers they figured this issue out and resolved. I and others I know go thru hell for disability. You just conformed that it is still ongoing on and we still need more change. I actually did write a book.

 


Iris L.
Posted: Saturday, December 26, 2015 7:22 PM
Joined: 12/15/2011
Posts: 17580


Welcome, moonlight. Alzheimer's Disease falls under Compassionate Allowance for fast-tracking by SSA.  It is too bad that you were not aware of this at the time you first applied.  The main website, alz.org, has information on it.

It is important to have the diagnosis and good supporting medical documentation and neurologist's report.

Most patients are denied on the initial application. It is the system, it is not personal.  

I hope you continue to post with us.  Can you tell us more about yourself?

Iris L.


BillBRNC
Posted: Tuesday, December 29, 2015 3:04 PM
Joined: 12/2/2015
Posts: 1018


Iris L. wrote:

Most patients are denied on the initial application. It is the system, it is not personal.  

I hope you continue to post with us.  Can you tell us more about yourself?

Iris L.

 ============

It is the system, it is not personal. I know what you meant, but it is hard to get much more personal when the government kicks a taxpayer to the curb for no reason other than reducing their workload.



Iris L.
Posted: Wednesday, December 30, 2015 1:28 AM
Joined: 12/15/2011
Posts: 17580


I don't think it is a matter of reducing the workload.  I was approved for SSDI on my first application.  I spent a lot of preparatory time to make my application comply with the requirements.  Everything has to be by the book.

Iris L.


speedykat23
Posted: Saturday, January 2, 2016 12:53 PM
Joined: 1/2/2016
Posts: 4


Hi everyone, I'm new here - glad to be here!

I got my dx in September last year, which took several months.  I was working full time (over 16 years at my job, with a non-profit agency in Colorado Springs).  I was making pretty good money for a non-profit, and when HR found out that I had the dx of early onset, my pay grade took a massive hit, going to to down to $10/hr.  The moment that happened, I left, on November 3rd.  I already knew that we would need to ensure I was no longer working, and I formally got the dx of early-onset.

We are now beginning to struggle financially.  While my husband has always made the lion's share, it's amazing to realize that my contribution really helped our family over the years.  And now it's gone.

I know about being poor, I lived that way with my family of origin. And I can do it again.  We own our house, and we are concerned that, yes, we will have to give it up.  It's a shame, it's such a lovely house.  But we will do what we must to keep our family together.  

I've already researched a good deal about how SSDI deals with everything, along with a dear friend of mine, whose husband is in last stages of dementia.  She's already gone through the elder care lawyer, she had to go to Medicaid (he is much older than I am), and she is going to lose her house.  

I think that's the part that scares me, and ticks me off at the same time.  

While I do understand the piece about SSDI (I have friends who have worked at DHS and knows the ins and outs of the system), it still rankles that we will most likely will have to get a lawyer to help us.


Iris L.
Posted: Saturday, January 2, 2016 1:58 PM
Joined: 12/15/2011
Posts: 17580


Welcome to our online support group, speedykat.  I am sorry about your recent diagnosis and your job troubles.  What exactly is your diagnosis?  Usually it is suggested that a person undergoing diagnostic procedures for cognitive difficulties go on short term disability until they are more certain of the direction they are going. 

If there is something treatable, they may return to work, possibly with work accommodations.  Otherwise, if the diagnosis is more permanent, they can apply for long term disability.  This way, they may retain their disability and other employment benefits.  Some people may want to consult an employment attorney for advice on protecting their benefits.

The Social Security Administration (SSA) has added early onset/younger-onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Here' a link about it: 

http://www.alz.org/living_with_alzheimers_social_security_disability.asp 

Please look into Compassionate Allowance.  You may want to discuss this with a Care Consultant at the Helpline.  The number is 1-800-272-3900.  There is no charge for the consultation.

Please keep us updated on your progress.  


Iris L.


speedykat23
Posted: Saturday, January 2, 2016 6:43 PM
Joined: 1/2/2016
Posts: 4


Hi Iris, thanks for the welcome to the message boards!

My dx, from my neurologist, is early-onset Alzheimer's.  As I mentioned in my introduction, I left my job November 3, 2015.  I was unable to handle anything at work.  I had been the lead IT person for Early Intervention (a national program for ages birth to three years of age).  I handled all the data for the children, and this organization's EI program had grown to over 800 children per month.  I used to be able to do everything, reporting back to the state of Colorado. I noticed that I was missing things, in my mind.  Feeling like I was floundering around.  I've always been a very articulate person, even very young.  Words started to elude me, and over the past year, it got worse.  

I began to realize last December (2014) that there seemed to be a problem with my memory.  It has progressively gotten worse.  It took 7 months to get a formal diagnosis (this past September 2015).  I am fortunate that my neurologist is considered to be one of the best in the state of Colorado.  The Memory team he works with are wonderful.

According to my neurologist and the team, I am considered to be "fast-progressive".  I've lost some ground over the past few months while trying to get the diagnosis.  I'm on medication (the generic for Aricept - I can't remember the generic name) and I am not quite sure if it's working or not.

My husband and I have submitted all the paperwork to SSDI.  

I have a question about this:  I know about the potential for SSDI to move a lot faster for someone like me with early-onset.  But my husband thinks it could take another year.  Is that true?  Because if it is, we are in deep trouble, financially.

Anything you can suggest would be very helpful.