This information applies only to people in the USA. Social Security Disability Insurance benefits fall under Title 2 (SSD), Title 14 (state), Title 16 (SSI), and Title 18 (health insurance for the disabled) of the Social Security Act. After 2 years on Disability, you automatically qualify for Medicare.
I personally suggest that anyone seeking legal counsel for a Social Security Disability issue avoid a firm called Occudata.
| To apply for Disability or to just keep working? | |
| Disability Pros | Disability Cons |
| a reasonably secure monthly income - food on the table and clothes on your back | the road to Disability - between applying for it and actually receiving a check - can break a person financially. It took me well over a year with an EF of 13% |
| less stress due to a small but constant income | Medicare starts after 2 years on SSD. Will you have health insurance until then if you quit and go on Disability now? COBRA applies to current health insurance but is very expensive |
| less physical exhaustion on a daily basis | CHFers tend to decondition faster when not working, meaning you get terribly out of shape and feel even worse because of it |
| lets you "save" your small reserve of energy for housework and loved ones | if you lose SSD later and seek work, you now have a gap in your work record that makes getting a job much harder, especially due to a pre-existing heart condition |
| if your condition progresses, you already have the Disability and don't have to go through the process when even sicker than you are now | being at home - especially if alone - is a lonely business, boys and girls. Working keeps you in social contact with other people every day |
| once officially on Disability, all your children under the age of 18 also qualify for immediate benefits | if you love your job, why give it up until you really have to do so? |
| if you have something you think should be added here either pro or con, contact me here | |
Good heart failure specialists don't like to use EF (ejection fraction) as the only benchmark, but EF is the measurement used most often to tell how your heart works. Vo2max scores may count heavily as well. My Vo2max is 20% (up from 13.5%) and my EF is 50% (up from 13%) and there is still no way for me to work. My CHF doc says "It is impossible for Jon to work. Jon's heart is improving faster than Jon is."
If you really think you are still able to work at least 32 hours per week and think you will be able to do so for awhile yet, I say try it. You will be happier working and being productive than collecting Disability. However, some CHFers' individual medical histories indicate that they may get worse regardless of therapy. If your doc thinks that is the case, maybe applying for SSD now is a very smart move. Your call.
Please note that it might be wise to start the Disability claim process first, and work while it is processed. However, obviously the government (SSD is a government bureaucracy of the worst kind) will say that if you can work while applying for Disability, you can just keep working and forget Disability! Again, your call.
If you are unsure whether you can keep at a regular job, contact a lawyer specializing in SSD and get some advice about this before making a decision! To deal with Social Security Disability, you need an SSD lawyer!
Getting your first actual Disability check in your hand may be quick and easy, but don't count on it! For most of us with CHF, it is a long, grueling process. Even if your claim is approved immediately, there is a 6 month waiting period before you receive any payments. You should be prepared to go one to two years without contributing any income to your family.
I know this sounds (and is) ridiculous, but consider that I had an EF of 13% and was still turned down twice. It was 14 months before I got my first check. Even after being approved, it took action by my Senators to get an actual payment into my hands because my first check got "lost" in the system. The Social Security system is not a thing of grace or beauty.
If you are already broke, you may qualify for SSI (Social Security Supplemental Insurance) and receive payments much more quickly. Some lucky people sail through the process and only have the 6 month waiting period to outlast.
There is no way to be sure you will qualify. Do not trust your doctor's statement that you qualify - he is not a lawyer! All my doctors said that with an EF of less than 30% I qualified for SSD. They were all wrong! I eventually found my state's SSD standards and at that time EF had nothing to do with it at all
Social Security uses out of date standards and is filled with bureaucrats who can shoot down your claim with no medical justification whatsoever. When I went through all this, Social Security's standards for disabling heart failure in my state did not include testing by echo. Why? Because my state's standards were so old, echos had not been invented yet when they were written!
Standards may vary from state to state (or federal district to federal district) for any given condition. This makes the process even more uncertain. Basically, a doctor who works for SSA (now, who do you think he favors?) and who has never examined you, will approve or deny your claim. He may not even be a cardiologist, since an internist can review a heart failure case. You are not a real person to him, just another "case."
Hopefully, you will have the results of modern tests on your side, such as echocardiogram, MUGA, MRI, or cath. Some people actually have to go see an SSA doctor in person and I believe that is even worse, since they only see you once and often only give you a cursory exam.
New official SSA guidelines say a 30% or lower EF qualifies you for Disability, but this is only a guideline and is no guarantee, believe me. I do not believe there are any "magic numbers" that will get you Disability for sure. Personally, I think it's a crap shoot.
When should you file a Disability claim? Now! I strongly suggest that you not waste a single day throughout the entire process. Every wasted day is one more day before you receive any payment. To contact Social Security representatives, call 1-800-772-1213, from 7:00 AM to 7:00 PM, Monday through Friday. You can also download the SAD - Service Area Directory - and use it to get phone numbers and addresses for your local SSA center.
You will need certain documents and information. First, get your original birth certificate. This is a requirement. If you do not have the original, you must go to your city's Hall of Records (usually inside City Hall) to buy a copy and have it certified there. Social Security will accept no substitute.
Social Security requires a copy of your medical records. The best thing to do is get copies of your records and take them with you to your local Social Security office, but that is not required. If you don't take copies with you to the Social Security office - or if you do it all by phone and mail - you will have to give the name, address, phone number, dates of treatment, and types of treatment you received from each doctor, clinic, and hospital so they can get copies of your medical records from every invloved doctor and medical center.
You will be asked about your work history for the last 15 years, including the duties and responsibilities you had on each job. You will need some details on your employment history because the claim form has a lot of questions. You will also need a copy of last year's W-2 form if you worked the year before getting sick. For SSI you will need a lot more stuff. To find out what, contact Social Security.
Please try very hard to get a letter from your doctor and your cardiologist stating in no uncertain terms that you are unable to work. The wording should be exactly like this: "John Doe cannot work at any job for any reason and will not get better." This is the most valuable item you can have, period.
It is tough to get a doctor to say this straight out but I urge you to try and try hard, to get this exact wording (using your name!). The letter needs to be impossible to misunderstand - exactly like the sentence above. All the medical jargon in the world is not nearly as valuable as a cardiologist saying the one non-medical sentence above!
If your doctor says he will write you a "strong" letter, ask for it - and get it yourself - a week or two in advance. Read it and if it is not stated like I have said, try very hard to get one that is. Whay your doctor genuinely thinks is a great letter to help you may end up hurting you badly. Why? Because he used too many words, leaving things open to interpretation by SSA people. Get it short, clear and unmistakeable.
Also, be sure to photocopy everything and keep a copy for yourself. If someone loses a single piece of paper during this process, being able to instantly produce a copy can save weeks waiting for one to be requested and mailed.
You probably will be turned down. Over 90% of all first Disability claims are turned down in my state. If your claim is denied, you will receive a letter saying so. You can appeal that denial and I strongly recommend that you do so. Your first step in the appeals process is a written request for an appeal, called a "reconsideration" to Social Security. You only have 60 days to get an appeal in writing to Social Security. If you miss that deadline, you may be completely out of luck, period. Stay frosty, boys and girls, or you'll miss out.
I would also recommend that you both call and write your federal Senators and your Congressperson. Senators usually have a staffer who does nothing but help constituents with Social Security Disability problems - no kidding. This guy can really help because he can cut through a lot of red tape very quickly for you. A case asked about by a Congressperson's staff even gets a special code at SSA - code C. If the Congressperson is really pushing it, a code CH is used that means Congress is interested and the case is "critical."
So, please write and call your elected representatives for help. It helps, of course, if you are already a registered voter. <g> Find your elected Congressperson at www.house.gov/house/MemberWWW.shtml and your federal Senators at www.senate.gov/general/contact_information/senators_cfm.cfm.
If your reconsideration is denied, you can appeal that decision to an administrative law judge. This is called a "hearing." Again, get the appeal in writing to Social Security right away! If you haven't already, this is a good time to get some outside help. You can get an attorney, have a Social Security representative help you, or go to an outside organization for help (see links at top of page). You might try the AARP if you are 55 or older. There are usually local or state agencies and non-profit groups able to assist you. It is not a good idea to go into a hearing on your own. I strongly suggest you hire a lawyer.
The hearing is usually held reasonably close to your home. The administrative law judge will tell you the time and place. You and your representative go to the hearing and explain your case in person. You can use anything in your Social Security file as well as new information. The administrative law judge will ask questions. You and your witnesses, if any, will answer them. Any witnesses Social Security calls, you get to question. It's a good idea for you to personally attend this hearing, even though it's not required. If you don't want to go, you must send Social Security a written statement saying so. As usual, you get to wait for a letter telling you the decision.
If you are denied Disability again at the hearing, you can ask for a "review." My case was on its way to a review when the grand old SSA decided they were going to lose this one and granted my Disability. Still, I have some information about the rest of the process. You have to file for the review with Social Security's Appeals Council. They'll read your request and decide whether or not to hear the case. They can refuse to hear it if they so desire.
If the Appeals Council does accept your case, it can decide the case or pass it to another administrative law judge to decide. Once again, you play the waiting game. It's this series of too-long waits that kills you emotionally and financially.
If the Appeals Council or administrative law judge denies your claim again, or if they refuse to review it, you have one more card you can play - sue SSA in federal court.
Hiring a lawyer is up to you. If I had to do it all over again, I would hire an attorney immediately, at the very beginning of the process. Lawyers can only charge you 25% of your initial payment by law (and there's a cap of $5,300 even on that), and they have to get written permission from Social Security to send you a bill. My lawyer cut months off the process and that time savings literally kept my family from going bankrupt. Your chances of obtaining benefits are greater and faster with an attorney than without one.
Be sure the lawyer you choose specializes in Social Security Disability cases only. That will insure that he has contacts within the "machine" that will smooth out the process. If you are still uncertain, remember: if they will turn down a person with an EF of 13%, they will turn down anyone. I know a man who was turned down while on the active heart transplant waiting list! It is a fight you can win, but I consider hiring an SSD lawyer a very smart move. You don't have to pay him a dime until you get that first check.
After 2 years on Disability, you are automatically enrolled in Medicare. You will have to fill out some more paperwork <g> but Social Security should notify you without any effort on your part when it's time to enroll. Medicare has 2 parts: Hospital Insurance (Part A) and Medical Insurance (Part B).
Another benefit is that once you are officially awarded your Disability, all your children under the age of 18 also qualify for immediate benefits. This helps keep your family solvent while you have children still living at home.
I strongly urge you to wade through at least some sections of the POMS - Program Operations Manual System. This is the guide that actual SSD employees use to know how to handle work on your case. You can find its beginning online at http://policy.ssa.gov/poms.nsf/poms?OpenView&Start=1&Count=100&Expand=4#4. Some of the terms are kind of weird but here's a start on some of them to make the reading easier:
This information may not be accurate, and is presented as is. Use this information at your own risk. I am not a doctor. I am not a lawyer. I am not in any way affiliated with the Social Security Administration or the federal government, or any state or local government or government agency. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. All information on this site is opinion only. All original copyrights apply. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005 Jon C.