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Work or SSI/ disability?

Shannonlharter
Posts: 2
Joined: Aug 2017

Hey everyone, 

I was wondering how many of you decided to 

Stop working and file for disability when you were diagnosed? I hav e diffused large b cell non Hodgkin lymphoma,  and have had multiple people suggest that I quit work. Currently I am on fmla. It's almost up. My problem is I love working. I couldn't imagine staying home all the time. But if I did it, the medical bills would  paid for. Any one else have this struggle? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Shannon,

I would not hold my breath on SSI.  I used to be a vendor working in SS offices and even their appeals court.  I am NOT now and have never been a SS employee, and am not trained in their policies.   Unless you have a specific, medically documented disability, SSI is usually in essence impossible to attain.  Most cancers are ordinarily NOT on these qualifying lists.  The disabilities ordinarily have to be severe and permanent, and cancer receiving treatment toward curative effect is not regarded as permanent.

I have had two cancers, one quite advanced. And I was run over by a car decades ago, and could not walk for about two years. None of these three particulars ever qualified me for anything.  In addition, my level of arthritis and orthopedic trauma is beyond what most could ever imagine, and it is all well documented via films and Radialogy Reports. But I qualify for nothing in any manner.

Further, what is dubbed "disability" is in essence just early "social security," with a time penalty. It is not described as such, but that is in essence what it amounts to, and the wa it is calculated.  My adoped sister a few years ago applied for and was awarded "Full Disability."  She thought she was in luck, until she read that it was based upon her lifetime earning, which were close to nothing. Her "full disability" was going to be about $90 per month.....she declined.  And know that "full disability" means you become legally unable to do gainful employment.  Earning wages later means you were not really "fully disabled."  And "partial disability" pays even less, and is harder to prove.

There is a huge lawyer specialty in SSI.  I have met dozens of these guys. Basically, they will only accept clients who have been rejected at least once by the SSA -- most state this on their TV commercials.  Beyond that, they are selective in who they will represent. Then they go to court essentially as appeals lawyers, representing the client for a huge cut of their "retirement." You are also required to pay at some point the attorney's "medical experts."  It is quite similiar to how personal injury representation works, and I have done a ton of that personally.

I hope this is informative. Again, I am no "spokesman" for anyone, but I have seen all of this myself, too many times to count.

max

po18guy
Posts: 993
Joined: Nov 2011

In contrast to Max's experience, I applied for SSD and was approved. The difference is that in my case, it was a relapse of the lymphoma which triggered the approval. At work, I was essentially forced into retirement and asked for SSD from that date onward. Based on federal law, I was entitled to SSD from the date of my relapse, so they back-paid me about 15 months more than I had asked for! As well, after two years, if you are still disabled, you qualify for Medicare regardless of your age. What I did was to lump all of my disabilities, no matter how small, into the application. I had permenent partial disabilities in my back and right knee from job-related injuries, so I included them.

When you enter the word "cancer", they expedite your application. It is worth applying on-line, as they can only say "no." As well, it seems that either next door or across the street from each SSA office is a law firm which does nothing but sue the SSA for disability claims. They offer free consultations and could give you a good idea as to whether or not you have a claim. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Actually, Po, none of this is "my" experience, given that I've never applied for SS.  I was relating the dozens of experiences I seen transpire around me, both people in the SSA offices, and everyone I've ever encountered who applied. Of the scores of people I've encountered with cancer, you're the only one who ever mentioned receiving disability; it may be more common than I thought.

You easy path does not corrospond to anything I've ever seen or heard about regarding cancer survivors and the SSA.  Yet I'm glad it went well for you.  It remains true that "disability" is derived from a person's eventual retirment availability, which is nigh-always paltry: a case of borrowing aginst little. 

SS lawyers do offer free assessments in many cases. It's everything thereafter that they gouge people with.

max

Shannonlharter
Posts: 2
Joined: Aug 2017

Thanks guys. From what I understand, non Hodgkin lymphoma is a " compassionate " cancer, meaning that they push the disability through faster.  I have my CT scans tomorrow to see where I'm at. I do my 6th round of Rchop on the 5th. I guess I will just wait and see what my scans show. 

Rocquie's picture
Rocquie
Posts: 829
Joined: Mar 2013

Dear Shannon, I did not "decide to stop working". I became unable to work. 

After I had been out of work for almost a year, I decided to file for Social Security Disability Insurance. My claim was based solely on my lymphoma and side-effects of treatment as I had no other health issues. A determination was made in my favor and three weeks later, I had a payment deposited in my bank account. 

There are people who equate SSI with "welfare" but it certainly is not. The amount of my disability checks are based on my earnings over the years and the social security deductions withheld from my paychecks, matched by my employer. It is insurance I have paid.

Filing online is easy but very tedious. Everything must be perfect or the claim will be denied. Before I began, I assembled, compiled, and recapped medical information. Doctors names and addresses, medical record numbers, lists of medications, medical tests, surgeries and procedures. Dates for everything!  In my working days, I was an accountant so I am used to tedious forms and government requirements. I know the importance of details and double and triple checking all work. It is also important that your medical office file their records requests on your behalf in an expiditious and detailed manner.  

I hope this dispels some myths about disability. You can receive it based solely on your lymphoma, but that depends on individual cases. It does not take months and months. You do not need to have an attorney. 

Good luck with your CT scan and your 6th R-CHOP.

Best,

Rocquie

 

Sal0101's picture
Sal0101
Posts: 124
Joined: Sep 2015

With my DLBCL I worked through R-Chop although my employer allowed me to work from home.  When I relapsed I also worked through my RICE although it became harder.   When I was going through the stem cell transplant procedures a social worker came in with paperwork and said because of the SCT I automatically qualified for SSD for at least a year.  (tied to my earnings of course). My first thought was "no way, I'm not doing that". After the SCT my mind changed and I applied. No questions asked, I was approved. I'm coming up on 1 year.  Had a CT yesterday and am waiting for the results.  Hopefully it's clear! I would be thrilled to have the SSD pulled from me because I'm " so called healthy". 

Sharon

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Sharon, just hoping your CT scan results were good? I am almost 2 months out from SCT and will have PET soon to determine if I need radiation treatment. Wish you the best!

lindary's picture
lindary
Posts: 642
Joined: Mar 2015

Like Sharon (SAL0101) I worked through R-Chop & Rice for follicular non-hodgkins lymphoma. I was scheduled for but did not have SCT. I too had people who suggested I should take retirement. I had many reason for not doing that, the main one being my husband had taken early retirement and I needed to work as long as I can to get the max when I do retire. However if it were to come back I would have to think about this long and hard. 

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

I was unable to work because I needed to be hospitalized for all my chemo treatments. Thank goodness I purchased an insurance policy for short/long term disability when I started at my company. That insurance company called me and suggested that I apply for SS disability when I became long term. At first I thought no, but it was explained to me that they freeze your work time so it's not counted in your SS retirement calculations with no income. The insurance took care of the whole application process and I was immediately approved. 

Gymmom94
Posts: 6
Joined: Feb 2018

I have been placed on SSDI after a relapse and worry about being taken off. I don’t feel I’m able to go to work. Suffer with chemo brain, feeling constantly out of it. Having some more cognitive test soon. How do I explain more to my doctor about feeling stoned all the time. 

po18guy
Posts: 993
Joined: Nov 2011

The more that "chemo brain" is studied, the more it appears similar to PTSD, which is a diagnosis and a certified disability. When I applied for SSD, if you were still in treatment at the two year mark, you were considered permanent on SSD. Medicare kicked in at that 2 year mark, regardless of your age. If doctor is not seeing your troubles, find another doctor. If its your PC, find a hematologist at your treatment center. If it is your hematologist, then ask to consult with another. Have you consulted with a psychologist or pschiatrist?

Gymmom94
Posts: 6
Joined: Feb 2018

I’m having a neuro psychologist exam on Monday. I have been out of work since last June, had a stem cell treatment in August. Its been a long recoverly with two colds and flu. My insurance compay from work got me onto SSDI last August. My job has let me go after 20 years and has changed so that I worry about learning something new and failur.

 

po18guy
Posts: 993
Joined: Nov 2011

If you are a worrier, you might try this: Get a spiral notebook and write your worries in it as they occur to you. Go back every week or so and cross off those which never came to pass. I'd almost bet that you cross all of them off - if not, then nearly all. What this does is gives you power over worry. Instead of a mental process which produces a feeling of powerlessness, you convert it into a physical process in which you take charge of worry. You see the results with each worry that you cross off. I think that, over time, you can 'unlearn' worry by noting how infrequently it is realistic and how frequebtly it is revealed only as negative thoughts. Honestly, worry is one of the most counter-productive activities that we participate in. It is doubt when we need hope. It is sensing impending doom when we need confidence and control. Just a thought.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Gymmom,

You posts trouble me very much. You absolutely deserve your social security for life, now. SSDI later in effect becomes conventional ss after you become old enough for ordinary retirement.

A few years ago I worked as a vendor for SSA offices, including its appeals court in my city. I do not work directly for the SSA now, and never did, but I doubt seriously that your benefits will or even could be cut. You mention that you are "worried" about it happening, but do not give reasons. I do not think you will lose the SSDI, and there is an appeals process if you do. I hope you can be confident in this matter.

I recall someone writing a while back that SCT qualifies for lifetime disability, but I do not recall who; if someone is knowledgable of this policy, please write.
max

ShadyGuy's picture
ShadyGuy
Posts: 392
Joined: Jan 2017

I would hope that you get to keep your disability but eventually get to the position where you no longer need it and return to work. Living on disability is, at best, just scraping by. Its no way to live out your life. When I was diagnosed my employer let me go after the 12 weeks of FMLA ended. I had “long-term disability” which would pay 75% of my salary till I was of retirement age. Or so I thought. Well that was a big disappointment. The insurance company (CIGNA in my case) required me to file SSDI which was deducted from my benefit. After 12 months I got a letter saying I was required to go back to work on any job paying 50% of my previous salary, despite being classified as disabled by SSDI. So much for “long term insurance”. Read the fine print and don’t count on it. Working is the best approach if that option is available to you. If you are 55 or younger I advise looking at SSDI as a temporary thing to get you through a rough spot and not as a lifetime condition. Working pays better and is a much more satisfying way to live. I wish you all my best.

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