How to get SSDI for Mets BC

After the August CT scan showed that my bladder cancer had metastasized to a lymph node by my neck, I started looking into whether I qualified for social security disability benefits, or SSDI.  I checked out from the library Nolo's Guide to Social Security Disability, since I knew nothing about SSDI, other than I had been paying into the social security system for decades.  It's a very helpful book, and clearly explains the eligibility and application process.  I recommend it to all SSDI newbies.

I went to the Social Security Administration's website and accessed my current Social Security statement.  It stated that, over my career, I've paid $168,251 in Social Security taxes, and my employers have paid an additional $58,976.  I've also paid $95,539 in Medicare taxes, and my employers have paid $82,432.  It also confirmed that I had worked the required minimum 10 years to qualify as a direct benefits recipient.  I figured that I've contributed my fair share, and I may as well see if I can what I can now, since I'm almost certain to not be collecting regular retiree benefits.  

Reading the book, I learned there is a two-part process to receiving SSDI:  first, one must qualify as disabled; second, one must pass the financial eligibility threshold. One must wait for five months after the initial date of disability to qualify for benefits.  SSA will pay only a year of accrued benefits, so anyone who waits more than 17 months from the initial date of disability is forfeiting benefits that would otherwise be paid.  Pass both tests, and I can join millions of others sucking at the massive federal teat, oops, I mean receiving tax dollars redistributed by our munificient and compassionate federal government. 

The Nolo book warned that the disability qualification is the most difficult and complex.  I learned, however, the Part 13 of the SSDI Medical Listings regulations explicitly state that persons with metastatic bladder cancer are considered to be totally disabled for purposes of the social security disability income, regardless of your actual physical condition.  Here's what it says:

Listing 13.22: Carcinoma of the Urinary Bladder (Adults)
The urinary bladder stores urine received by a means of a ureter from each kidney.  The bladder discharges urine from the body through the urethra. Most urinary bladder cancers are transitional cell carcinomas.  Like other cancers, bladder carcinomas have a much better prognosis if detected early before they have spread beyond the bladder.  Even metastasis to regional lymph nodes results in a poorer chance for survival, so it is an allowance (part D). Failure to achieve complete surgical removal of the cancer for any reason satisfies part C.

Total cystectomy (part B) means complete removal of the bladder. When cystectomy is necessary, the ureters can be sewed into the last part of the small intestine as a drainage site for urine. Any infections or other complications affecting kidney function as a result of such urinary diversion must be evaluated under Listing 6.02 (Part 6), which deals with decreased kidney function.
 
a. Listing Level Severity
For your condition to be severe enough to meet this listing, it must match A, B, C, or D, below.
A With infiltration beyond the bladder wall.
B Recurrent after total cystectomy.
C Inoperable or unresectable.
D With metastases to or beyond the regional lymph nodes.
 
b. Residual Functional Capacity
RFC has little relevance to this listing, since this listing is met when the cancer is advanced
enough to cause any significant symptoms or other complications.

Nolo's summary of the Medical Listings is available for free download here.  This contains SSA's medical listings and disability qualifications for for all health conditions.  Cancer is in Part 13; bladder cancer is section 22 of Part 13. 

For mets BC, the key language is "Even metastasis to regional lymph nodes results in a poorer chance for survival, so it is an allowance (part D)." An allowance means that you meet the threshold definition of disability.  This definition of disability applies regardless of your actual physical limitations; as long as you have confirmed metastatic lymph nodes outside your bladder, you are considered to be totally disabled by the Social Security Administration.  I note that T4 bladder cancer (infiltration beyond the bladder wall) meets part A; a recurrence of the cancer after RC meets part B, and inoperable BC meets part C.  Those didn't apply to me, but I know other BC warriors may have those conditions.

After satisfying myself that I likely met the disability threshold, I read about the income limitations.  I don't pretend to understand those rules; sometimes it implied that SSDI would be paid only if you are earning below a certain amount, and other portions implied that your current income was not as relevant for disability purposes.  Everything that I read told me that I should go ahead an apply and see what SSA said.  Getting the disability finding can be important, because it starts the clock ticking on when a recipient might be eligible for Medicare (maybe 24 months after the initial date of disability), or for other purposes.  I shrugged, thought "why not", and decided to apply. 

I went online to ssa.gov and filled out the forms.  It's also possible to do it by telephone, or an in-person visit, but online is by far the easiest.  The first form was to gather my basic information, and took only about 30 minutes to complete.  The second part required reciting my detailed medical history, including naming every doctor I saw and every procedure I had.  That took about 5 hours to fill out.  I frequently referenced this blog to refresh my recollection of who did what to me when.  I submitted the forms on August 26, and mailed in a foot-thick stack of medical records a week or so later.

During the week of September 9, I had a couple of phone calls with the claims examiner from my local SSA office.  She was most concerned with getting the details regarding my compensation history.  I explained it over the phone, she filled out some forms, then faxed them to me for review, additional information, and signature.  I provided a detailed explanation of my compensation since I was diagnosed in late 2011, signed the forms, and faxed them back to her.  

Less than a week later -- lightning speed, in my opinion -- the SSA mailed me a letter stating that it agreed that I was disabled within the meaning of the SSDI regulations.  The examiner cited the May 2012 pathology report and related CT scans showing that my cancer had metastasized outside of my bladder to my regional lymph nodes.  The letter indicated that I would get a separate letter stating the financial award.  That came a week later, when SSA determined that I was totally disabled in May 2012, when my surgery confirmed that I had metastatic bladder cancer.  The letter further explained that I was eligible to start receiving benefits as of October 2012 (following the mandatory five month waiting period), and I could expect a lump sum payment in the amount of $28,032 for accrued SSDI benefits to be electronically transferred into my bank account.  I checked and found that the transfer had taken place on September 19.  From date of initial application to date of first payment, the entire process took under a month. 

If that wasn't enough -- and apparently it's not -- SSA sent Jennifer a letter and invited her to apply for spousal benefits, and for minor benefits for Garrett.  The letter said that she could call the local office to schedule a phone interview, and they'd do the paperwork for her.  That's remarkable.  She called the office, and was told that the first phone interview date was November 15.  She was planning to do it online, but now that the federal government is shut down, I'm not sure if SSA is accepting new applications.

Takeaways:  The SSA is eager to redistribute our tax dollars, and is remarkably efficient.  If you or a loved one has mets BC, then get all your documentation together, fill out the forms, and you can join me and my family at the federal trough. Maybe later I'll wax philosophic on the morality underlying our country's social security programs, but for now I'm with Pink Floyd: Money it's a crime / Share it fairly but don't take a slice of my pie.