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This diary has been a challenge for me, I guess I am TOO familiar with the subject matter.
(we won't talk about the episodes of panic or hyperventilation either from remembering doing this work laughs)

First an admission. I worked for the Dept. of Social Services for the State of California for 15 years working on Social Security Disability Claims.  Although this bit of personal history does give me experience and insight that is more than the average person might have, I am not claiming to be an "expert" in the strict legal sense.  Social Security Disability as we all know is serious business, I am not trying to provide legal advise. I am just sharing insights into a process that I have 15 years of experience with. When I first started working on Disability claims there was a 6 foot long book shelf of binders that held the official SSA policies that explained how we were to process disability claims and everything was done by hand and with paper. Today, it is primarily an electronic process, that 6 foot book shelf? Is now a 150 MB PDF file. All medical records received are scanned and turned into electronic documents that are read by examiners on their computer monitors.

A Brief (and Incomplete) History

I will not be going into too much detail about the history of SSA Disability other than to say that (if I am remembering my training from 1992 correctly) it was 1957 when SSA was expanded to include disabled workers.  And as I remember from that same training, it was 1971 when SSI (Supplemental Security Income Disability) began to be administered by SSA instead of the states.

A Short Summary of The Process

The basic process can be described as follows:

1.)You file an Initial Disability claim with SSA.

2.) A decision is made on your claim.  If you are approved then you will receive SSA or SSI or both. 24 months later you will begin to receive Medicare also.

3.) If you are denied, then you have a right to you file what is called a Reconsideration of your claim.

4.) If you are denied again then you can file an appeal with a SSA Administrative Law Judge (ALJ).

5.) If you are denied by the ALJ, then you can file a law suit with the Federal District Court in your jurisdiction.

6.) If you are awarded SSA Benefits you are subject to periodic reviews to make sure that you are still disabled these are termed  Continuing Disability Reviews (CDR).  For most cancer patients, the CDR review schedule is about once every 3 years.  

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
More below the orange squiggle.......

Now I will try to begin a more detailed discussion of this process. My focus will be on the first two steps since that the bulk of my experiences were with.

Congress in its infinite wisdom wrote a very stringent definition of what they would consider disabling for SSA.

Here is the SSA Definition of Disability

the term disability means (A) inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months, or (B) blindness; and the term blind means central visual acuity of 20/200 or less in the better eye with the use of a correcting lens.
I know that everyone`s first question is: "Okay, what does all that legalize/legislative language mean?

Let me see if I can break it down a little bit for everyone.

If you are not into these kinds of details you can ignore this part

Please keep in mind that many of SSA's terms have been litigated over in the courts and in some instances all the way to the Supreme Court and so they sometimes have precise very legal meanings. So they do not always have just  every day common definitions but very specialized, legally anchored definitions some times.  

One term everyone needs to know: Listing - for SSA it means that they have a list of medical conditions that are considered to be disabling IF the evidence of a medical condition match exactly, what is described in the listing.  So as an example if you have a kidney transplant you are considered to be disabled because you meet the definition of disability under the listing 6.02B.

end of boring dense interpretation of bureaucratic language


This first web page describes just the cancer "listing" and what they consider about cancers to be disabling

SSA Considers to be Disabling Cancer Conditions

This web page is SSA's listings for ALL medical conditions that are considered to be disabling.

SSA Listings Book Table of Contents

Discussion About What SSA "Listings" Mean

It is easiest for me to just use my cancer as an example of what they mean by disabling.

3.14 Lungs.

A. Non-small-cell carcinoma--inoperable, unresectable, recurrent, or metastatic disease to or beyond the hilar nodes.  


B. Small-cell (oat cell) carcinoma.


C. Carcinoma of the superior sulcus (including Pancoast tumors) with multimodal antineoplastic therapy. Consider under a disability until at least 18 months from the date of diagnosis. Thereafter, evaluate any residual impairment(s) under the criteria for the affected body system.

My lung cancer comes closest to matching the discussion @ 3listing 14A. I have a Non-small-cell carcinoma, however, my cancer is operable (Surgery is now scheduled for Feb. 5th thank goodness) it is not unresectable (as far as we know as of right now) and lastly, it is not recurrent or metastatic beyond the hilar nodes (the hilar nodes are those nodes surrounding the trachea and at the branching of bronchi from the Trachea).

As of right now SSA would not consider me to be disabled.  Which is a good thing because I don't think I am disabled either.  However, IF it is determined during surgery that my tumor is unresectable  or if the nodes beyond the hilar nodes are positive for cancer then I would probably meet the listing and be considered disabled.  

I hope that this has helped everyone to understand the process a little better.

The Language of THE SSA Bureaucracy Ends Here I Promise

What you do need to know is that if you ever have to file for SSA/SSI disability it is very helpful to understand what those folks are looking for, especially as it pertains to medical information.  They need to establish a couple of things in their evidence stream.  First that you have a medically determinable impairment. ie lung cancer or endometrial cancer, ovarian cancer, prostate cancer etc. and they also have established when that condition prevented you from working AKA Onset.  

In order to make these determinations they need copies of your medical records. You can speed up the processing of your claim providing a copy of your medical records with the filing of your claim (These days in most states they prefer electronic copies not paper). Yes, a CD or a thumb drive works these days, just make sure that it is a locked PDF file so that the contents can not be altered.  Paper will work too.

In terms of what they want of your medical records here is a list:

Physical exam, from before the onset of your condition.  (for me, medical onset was 3/6/2012, that I when I first went to see my doctor about a cough). I was diagnosed with lung cancer on 4/5/2012 and I stopped working  because of my medical condition on 7/25/2012 when I was hospitalized with pneumonia.  

So they would want to see my medical records from 3/1/2012  to present.  They will want copies of the physical exams, X-rays, CT, Scans, PET Scans, PFT's, Bronchoscopies, Discharge summary, surgical reports and pathology reports as well as any follow-up notes (there are lots of follow up notes since I had chemo too). They would want copies of my medical records from not only my Oncologist but also from my Primary Care doctor as well as my Surgeon and Pulmonologist.

I hope folks find this discussion informative and helpful.  

Originally posted to Monday Night Cancer Club on Mon Jan 28, 2013 at 04:30 PM PST.

Also republished by KosAbility.

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