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If your physician has not already suggested that you apply for Disability Benefits, talk with him/her about your desire to do so. Find out what his/her opinion is on your condition and if their recommendation would be that you not attempt to gain or continue employment. While your physician's statement of your disability will not get your approved, if your physician doesn't agree with your decision to apply for SSD, then you will not have anything to back up your claim if you have to go through a court hearing. If your physician doesn't believe that you are disabled, then either find another doctor or find a different type of job. However, if your physician agrees that you are not able to commit to employment or that the stress of a job would endanger your condition, then proceed to the next section.
Ask your doctor if he/she would write a letter concerning your illness, treatments, and your inability to work. The following is a guideline you can print and take to your doctor, asking that he follow this format in writing your medical report. It will help your claim -- maybe not immediately, but definitely in the long run.
An efficient medical report must specifically address these issues:
1) Are there medically determinable impairments?
2) Do the impairments significantly limit the patient's ability to perform substancial gainful work?
3) Will the impairment last for a continuous period of more than one year — Is the impairment expected to result in death?
Within these guidelines, the following information written in a narrative format will greatly enhance the patient's claim:
a) MEDICAL HISTORY/CLINICAL AND LAB FINDINGS:
State experience with the patient: date first seen, frequency of visits, findings and conclusions.
b) TREATMENT, RESPONSE, AND SIDE-EFFECTS:
Describe any prescribed treatment or regimen and the response. Explain whether withdraw of the regimen would worsen the patient's impairments.
c) FUNCTIONAL INCAPACITIES, HAZARDS, AND RESTRICIONS:
Explain the process and severity of the impairments, describe any variance of the interference with activities, and for how long into the future the imapirments will continue and if they are likely to worsen over time. As described by the patient, state the type and severity of pain involved.
d) EMPHASIZE any potential for work interruptions caused by impairments, treatments, and/or side-effects.
e) EMPHASIZE impairments of the key capacities and be precise about enviromental hazards or resctictions.
f) Be explicit about treatment side-effects.
g) EMPHASIZE conditions which would be difficult to feign (make up), particularly those involving severity of pain and symptoms which are difficult to document with accurate description.
Identify all diagnosed conditions and symptoms involved.
Make your own medical file at home. Keep accurate records of your condition and impairments, doctor visits, diagnosis, medications, and any side-effects. Print out information on SLE and on each of your secondary conditions. If you suffered symptoms for months or years prior to your lupus diagnosis, make a list of every symptom you've had in the past and every physician you consulted. If you were hospitalized at any time in connection with lupus symptoms, make a note of this also. The SS application will ask for all of this information.
Keep in mind that lupus is the most misunderstood disease by the general public and even by physicians, so you must realize that the SS staff is not going to know much about lupus either. Lupus is particularly difficult to establish as permanently disabling because of the nature of its symptoms, and especially if you have experienced periods of remission in between periods of illness. It is very difficult to explain that we may be capable of working 3 days a week, but not 5, and that we may be able to work continuously for a month or maybe even 6 months, but then be unable to work for a period of several months. SSD applications are geared toward disabilities that have no "gray areas", so to speak. It expects you to give an exact date you became disabled with a brief, precise description of your disability. With lupus, this is impossible. Therefore, in addition to filling out the application to the best of your ability, you will also need to attach as much information as you can about your condition and its impairments. With my application, I sent an entire 3-ring notebook filled with descriptions of lupus, my secondary conditions, their symptoms, impairments, doctor visits, medications, past mid-diagnosis, etc. BE PREPARED TO FIGHT!
Locate your nearest SS office and request an application for Disability Benefits. You may do this over the phone and the application will be mailed to you, or you may go into the office and ask for one. If you have already made the preparations I have previously discussed, filling out the application will be much easier. The application itself is extremely long, with multiple pages, asking for everything from the date you became disabled to how many times a day you use the restroom! LOL! I'm teasing there, of course, but you will be amazed and probably frustrated at all the questions and the types of questions on the application. Some are near impossible for a lupus patient to answer. Because of our disease, many of the questions cannot simply be answered "yes" or "no", and they can't be answered in 1 or 2 sentences. The application assumes that a disabled person's condition remains exactly the same every day, which isn't always the case with SLE. Take your time and answer each question as thoroughly as possible, attaching extra sheets of paper when necessary. Obtain as many of your medical records as possible, make copies of them, and send one set of copies with your application. (Keep the other set in your personal file.) Once you have completed your application, MAKE A PHOTO COPY of it before you mail it in! This will save you much time and headache in the future. I made the mistake of not making a copy of my original application and then later had to do it all over again! Keep copies of everything from this point on.... medical records, prescriptions, your own journal, and everything you send to or receive from the Social Security office.
It can take as long as 2 months before you hear anything from SS after mailing your application. You will then receive a letter acknowledging their receipt, with an appointment date. You may have a face-to-face interview at your nearest office or you can request a telephone interview. Either way, you can expect the interview to take approximately 1 1/2 to 2 hours, so get comfortable first! The SS representative will go over everything on your application with you, question by question, and ask if there is anything that needs to be changed or added. They will then explain the way SSD payments are determined, your own eligibility of payments (upon approval, of course), and other information pertaining to your pending benefits, such as Medicare and SSI for low-income families. If you have minor children, you will receive an extra amount for them, which will be discussed. They will require proof of age for you and each of your children and this can only be done with ORIGINAL birth certificates. Photo copies will not be accepted! If you do not have birth certificates for yourself and your children, get them now. You may also be asked to provide a copy of your last Income Tax Return and W-2s. If you were not able to provide all medical records when you sent in your application, you will be asked to sign a release form so that the SS office can obtain them. It is much better if you will get all pertinent records yourself, as the SS office will not necessarily obtain copies from every physician you have consulted. They pick and choose, and may only get records from just one physician and this may not be the doctor who has diagnosed you or provided the most information about your condition. The SS office is actually looking for ways to discredit your claim. The burden of proof rests on YOU!
The next step in this process is having a consultation with a physician chosen by the SS office. This will be at no expense to you and you may even be reimbursed for gasoline expense to and from the doctor's office. This is where I had a problem the first time.... the first appointment the SS set up for me was with an Ophthomologist. Because I had written on my application that I am blind in my left eye due to Optic Neuritis, they ignored everything else on my application and focused on my loss of sight as the terms for my disability. This was not the condition I was claiming to be disabling... inconvenient, imperative, but not the grounds for my disability! I therefore had to appeal their decision to send me to an Ophthomologist and request a thorough physical examination, not just of my eyes. This caused a further delay in my case.
I had requested to consult with a Rheumatologist, but unless your state is different from mine, you will not see any type of Specialist. You will be sent to some unknown, general practioner who has a very small practice and is in need of the extra money provided by the SS for examining their claimants. In other words, you will probably see a physician who graduated at the bottom of his class, just barely passed the medical exam by 1 point, and has absolutely no idea what SLE really is. Again, let me repeat that the SS Administration is attempting to discredit your claim, and the doctor of their choice is going to report that you have little or no disabling impairments.
The physician that the SS office sent me to actually wrote things in my report that he just fabricated! He stated that I drank 5 - 6 cups of coffee a day... I do not like coffee and I NEVER drink coffee, ever, never have, yet he wrote this in my report. He asked if I was married and all I said was that I am divorced. Period. I said nothing else about it whatsoever. Yet, he wrote in my report that I had been suffering considerable depression and anxiety since my divorce! That is absolutely not the truth and I certainly never said any such thing.
Basically, all the examination includes is mobility tests, like lifting your legs, raising your arms, squeezing his fingers, stooping, bending, etc. I will not go into any details of all that was said during my examination, but just let me sum it up by saying it was the biggest farce I've ever been subjected to. I had to explain to him what Lupus is and what Lupus does. Several of my secondary conditions, he didn't even know what they were and I had to explain them to him. Now.... THIS is the doctor that the SS sent me to. So be warned.
You will then have to wait a few more months to hear from the SS again. You can expect to be denied. Expect it. Don't be discouraged or angry, and do NOT give up! This is what the SS is counting on... that you will accept their denial and go get yourself a job. As I stated earlier, terminal cancer and AIDS are the only conditions I know of that receive approval with the first application. When you receive your denial letter, you will have 10 days to file for a "Reconsideration." Make absolutely certain that you get the necessary papers and file for your reconsideration before that 10 days is up! When they give you a time limit, they stick to it, no exceptions. If you don't have the opportunity to pick up a "Reconsideration" form from a SS office, simply write them a letter within that 10 days, stating that you want a reconsideration of your claim. They will then send you the papers the fill out... More forms. And then you get to wait another couple of months to hear back from the reconsideration.
Expect to be denied again on the reconsideration. This time, you will have 60 days to file for an "Appeal." Go to an attorney who takes their fee out of your settlement so that you do not need any money up front for their services. If there is more than one SSD attorney in your area, ask them what their success rate is with such claims. Ask them if they have any criteria of their own before they will accept your case. Most of the time, these attorneys will not accept a case they do not feel they can win, because their salary is dependent upon you winning. This is also an extra incentive for them to work hard on your case. The attorney will then file your appeal papers for you.
It can then take anywhere from 1 to 2 years, yes, YEARS, before your case goes to court. Fortunately for us, the Lupus Foundation has worked so hard to get our disease recognized that the Social Security Disability Administration (SSDA) has added an entire section to their Criteria requirements just on Systemic Lupus! Prior to this accomplishment, taking the appeal before a judge was without exception. However, now that lupus has its own section in the SSD Criteria, we have a much better chance of being approved. We still have to go through being denied at least twice and obtaining an attorney, but many times, the SSDA will change their decision on your claim as soon as they receive the appeal from your attorney and you won't have to go before a judge. This is what happened in my case, and I have heard this is quite common with lupus claims. While the SSDA wants to weed-out all those who aren't truly disabled by automatically denying all claims, they aren't stupid. They know that if you got an attorney to accept your case that you obviously have sufficient evidence to back up your claim and that once in court, the judge will award you the benefits. Therefore, to save the state's time and money, they will usually go ahead and reverse their decision and send you an approval letter within about 2 months after your attorney has filed the appeal. However, if this doesn't happen, don't be alarmed. Pursue your claim with your attorney, gather all the information necessary, and make sure your personal physician will back up your claim in court.
From the time you are approved, you can expect to wait another couple of months (60 days seems to be the SS's standard waiting period) to receive your next appointment date. This is if you have minor children. This appointment will be to enter your children onto your claim and to determine the amount of money you will receive for your children. It will probably be another 60 days or so before you receive your award letter. You will be paid a retroactive lump-sum for all months, except the first 5, since you became disabled to the time you are approved. In other words, I was determined disabled as of December 1997. My benefits did not start until 5 months later, which was June 1998. Therefore, my retro-check was for the months of June 1998 through the time I was approved. You will also receive retro-checks for each of your children in addition to regular monthly checks. You will be required to keep precise records of how you spend the money for your children each month.