Saturday, January 31, 2009

Here is how to do it

First off, I must emphasize, getting Disability in 8 weeks IS NO EASY TASK.

Only 20% of those who apply for SSD are approved, usually within 6-12 months. That means everyone has an 80% chance of being denied the first time. We don't have the time to waste, which I understand only too well.

It took me 6 weeks to first gather all the documentation, then another intense week to answer the 8 page questionnaire (more on this later).

Here's a step-by-step plan (read **carefully**):

1. If you are weak from being unable to breathe, or are not 100% mentally sound (I know I'm not), GET SOMEONE WHO IS 100% HEALTHY TO HELP YOU. Someone who is 100% supportive, who loves you, and whom you trust with your life (this is a major undertaking) and who is an EXCELLENT WRITER. Anything less than that and you will probably have to wait the usual 6 to 36 months, including appeals, lawyers, and NO MONEY which comes too late for many (this article means to avoid that!). I was lucky that my wife is an excellent writer and editor (I am a professional writer, but editing my own stuff is hard as heck).

2. Find a doctor who is 100% SUPPORTIVE OF YOU and is willing to go the EXTRA MILE to help save your life and help get you SSD. This is MOST IMPORTANT. If your doctor doesn't care about you enough to take the time (time = $$$ and many docs will give you lip service but eventually fail you -- and cause immeasurable suffering in the process), you WILL FAIL in your efforts (at least at the beginning -- which, like first impressions, ARE CRITICAL). Your doctor will be asked to write a letter describing in prose form your condition.

A good doctor will both take the time and say the right things to support your SSD claim. If they do not, YOU WILL BE DENIED. If a medical professional can't convince SSD in one letter you are UNABLE TO WORK due to your medical condition, you will be summarily and absolutely denied on your first try. You will be forced to appeal, and this process will take 12-36 more months of courts, attorneys (you SHOULD HIRE AN ATTORNEY IF YOUR CLAIM IS INITIALLY DENIDED and nerve-wracking waiting. An attorney who specializes in SSD claims (they're in the phone book and everywhere online) will save you MUCH TIME -- and time is of the essence for all of us).

I apologize for being repetitive. I don't want any of you to wait and suffer and have to worry about legal stuff while fighting for your life and paying bills.

3. RESEARCH. RESEARCH. RESEARCH. Go to Social Security's website and every other website you can find on the subject and read and research. I don't have time to list all the websites (I want to finish this article first -- perhaps another article down the road) but they exist, believe me. The best, some written by Disability attorneys or ex-SSD pros, will give you the inside scoop.

Here's a good place to start:

4. If you apply online at, the MOST IMPORTANT QUESTION TO ANSWER PROPERLY IS: DO YOU HAVE A TERMINAL ILLNESS? I had to stop, save the application, and call my Vocational Rehab social worker the next day and ask her.

She asked, "If you don't get new lungs, will you die?"

I said, "Yes."

Her response was, "Then technically, I would say, yes, you do have a terminal illness."

If you answer this question correctly, you will be put on the FAST TRACK for SSD review, and SS workers MUST review and respond to your application WITHIN 6-8 WEEKS. It is THE LAW. Thank goodness the government doesn't mess around with dying folks. They actually do understand the priority and want to avoid lawsuits and other nastiness.

If you fumble this ball, your app will be placed on the bottom of a **huge pile** of apps the SS case workers each have on their desks and they will get to it down the road (6-12 months).

I ended up APPLYING ONLINE then calling and making an appointment for an in-person interview (2 weeks of more waiting) with my local SS office (all online info). I was immediately called by SS because I checked "Terminal illness" online.

5. Because my health issues developed within the last 6 months, I had a COPY OF EVERY MEDICAL RECORD (every test, x-ray, blood work results, doctor letters, reports, hospital reports to my pulmonary PCP doc), EVERY SINGLE PIECE OF PAPER, including my application to NJ Division of Motor Vehicles for a DISABLED PLACARD and a copy of the actual placard I received along with the wallet card, I was able to THOROUGHLY DOCUMENT MY MEDICAL CONDITION.

There were no gaps, no questions about who, what, when, where, how. Everything was in black and white, which every good bureaucrat loves. No muss, no fuss. The straight dope.

Every report had the words: SEVERE -- this is **critically important**, because in medical lingo, SEVERE is like a CODE WORD FOR "WILL DIE SOON". Make sure your documentation has SEVERE again and again in describing your medical condition -- or you will NOT be considered TERMINAL and will be denied the first time. You know what's next.

6. After I had a pile of medical reports a half inch thick (your thickness may vary according to how long you've been ill and when you got your doctor letter stating unequivocally that you NEED A LUNG TRANSPLANT -- another critical part of your records), I downloaded the SSD medical and work history form and FILLED IT OUT IN 100% PAINSTAKING ACCURATE DETAIL (it includes your work history for the past 15 years and MUST LIST EVERYTHING), I set up an IN-PERSON APPOINTMENT with my local SS office and went as scheduled (if you miss this appointment FOR ANY REASON, you will be denied), I slapped all this documentation on the case worker's desk along with a certified birth certificate (the SSD docs will list every piece of paper you MUST BRING) and she was *stunned*.

Apparently everyone (at least in this person's SS work history) goes in to an SSD appointment without doing any homework and she had to struggle with each of them for hours, only to get vague answers and not be able to complete this long long app at her desk on computer. I imagine this is tortuous for her and for the poor disabled person who is already sick and can't remember anything with detail (I can't).


SAVE YOUR CASE WORKER A LOT OF GRIEF AND WALK IN WITH ABSOLUTELY EVERYTHING THEY NEED RIGHT THEN AND THERE. THEY WILL APPRECIATE YOUR EFFORT.If they have to contact your doctors and hospitals and track down blood tests, etc. -- THIS WILL ADD COUNTLESS MONTHS OF THEM WAITING AND YOU WAITING, which is absolutely like a 6-12 month root canal for you. Nobody I know likes root canals. I don't and I assume you don't either.

My case worker, astonished, took everything I had, noted that I had everything she needed, and let me go home while she entered all the info word by word (quite a few of which she made typos on and I had to explain to the local SSD office) on her computer, scan all my medical records into electronic format (thank goodness our government has seen the beauty of digital docs and the Internet!). This took her at least 2-3 DAYS, and she called me twice for more info.

(Okay, I confess: I was on oxygen 24/7 and walked in to the SS office with my tank on wheels and nose cannula on for effect. Don't know if it worked but this is serious stuff, so don't fake it.)

7. Approximately 4-5 nail-biting weeks later, a package arrived in the mail from my local SSD office with an 8 page questionnaire to fill out, called the "Function Report - Adult". You have 10 days from the date of the letter (which arrives 2-3 days later) to complete the questionnaire and send it back to them -- or you will be denied. This experience parallels the trials of Job.

YOU MUST FILL THIS OUT TRUTHFULLY AND CONSISTENTLY. There are a lot of similar questions I'm certain tests your consistency.


This doc includes a self written description of your condition under the category of "Remarks" that is probably the first thing an SSD case worker skips to and reads first. IF THIS STATEMENT RINGS FALSE, YOU WILL BE DENIED. It must sound real and be real. These case workers have read THOUSANDS. They, like college admission folks who read high school senior essays, can tell immediately if you're being truthful or not. HAVE SOMEONE READ AND EDIT AND READ OVER AND OVER AGAIN YOUR ENTIRE QUESTIONNAIRE. MAKE SURE IT IS CONSISTENT AND TRUE. This is the one document that probably COUNTS THE MOST, after your medical records and doctor letter.

DOWNLOAD THE FORM AND WRITE IT UP ON COMPUTER SO IT IS EASY TO READ -- ***DO NOT HANDWRITE***. (Many websites try to charge you for an editable version of the form -- keep looking. I found it seconds later for free).


8. During the many weeks you will wait for an answer from SSD, if you undergo any more medical tests, get more reports, or any doctor or hospital letters, FAX (DO NOT MAIL) THEM TO YOUR SSD case worker immediately with a cover letter explaining what you're sending.


I happened to call this person to inquire about my app, finally got her on the phone, and she immediately knew who I was because she "had a pile of your faxes on my desk."

I think the most important letter I faxed her while waiting was Columbia NY-Presbyterian hospital setting a date for me to meet their lung transplant team. That was an undeniable proof that I WAS GOING TO DISCUSS A TRANSPLANT FOR REAL. OR I WOULD DIE.

9. Eight weeks later I got a call from SSD: my application was ACCEPTED. My wife and I didn't dance or celebrate. I was too stunned to react. I just sighed for a long time and sucked in more O2 to calm my rattled brain.

BTW - My daughter, who lives with my ex, will also collect SSD until she graduates high school (the limit age is 18, but if your child or any dependent is still in school, they can collect). My ex is incredibly relieved.

One thing is for sure: I am glad I don't have to worry about filing for bankruptcy while undergoing the most significant life-altering event of my lifetime.

I haven't yet met with the transplant team. I haven't undergone the medical tests that prove I'm "healthy" enough for a transplant. I'm not on the UNOS list. But I have hope. I want to live. I know all of you do, or you wouldn't be receiving this newsletter.

Follow every word of advice above carefully. I honestly don't know any other way to succeed, so please correct me if you have a better idea. I'm not selfish and am open to all ideas and suggestions. The above is simply how one person did exactly what the system required. It's a lot. It's like Atlas holding the world on their shoulders -- then some fool throws a hail-Mary football into their gut.I hope I save many of you much painful waiting and aggravation.

My heart goes out to you if you already applied for SSD and are waiting for an answer or been denied. At least follow my advice and get an SSD attorney if you haven't already. They are worth the money (capped by law). This article is obviously for those of you who are about to file for SSD or who may do so in the future.I want each and every one of you to collect your well-deserved and self-financed SSD.

I want each of you to get a transplant and survive, as I hope to.I send each one of you my love and unconditional support. God-speed and good luck.