I have had a lot of requests to talk about Disability, I felt like I finally had enough knowledge on this topic that I could cover it. I'm not a lawyer, my information comes from multiple sources, experiences, and research. Hopefully it helps you along the way.
First and foremost I want everyone to understand theses things about disability: It is not a glamorous lifestyle, you will always be better off not being on disability. For some of us this is the only choice. It is a long and frustrating process that is stressful and can affect you and your family. We don't make this decision lightly, no one in their right mind would choose to go on disability if they felt they had any other option. We don't quit our well paying jobs with great benefits for poverty level income. Disability is there for people who need it and if you happen to be one of those people do not be ashamed. And yes; Fibromyalgia is a medically determined disability. Unfortunately there are studies that show disability often has a negative psychological affect on people and because of the economical and social strain people on disability suffer from anxiety and depression. However, there are many programs that will help those on disability try to re-enter the workforce without penalizing them. Try to view disability as a tool in your toolbox to better health and not a life sentence.
Ok on to the technical bits:
SSDI vs. SSI
https://www.ssa.gov
Both programs require you to be determined disabled.
Social Security Disability Income: work based program that requires you to have a certain amount of work credits in order to qualify, you may be able to qualify under a parent or a spouse as well. You can find out if you qualify by talking to social security, you can also receive a statement that estimates your SSDI benefits should you become disabled.
Supplemental Security Income: need based program, you are not required to have worked but you cannot have assets worth more than 2,000.00 (not including a home or car) spousal income would likely disqualify you. You can receive both SSDI and SSI.
Social security doesn't pay benefits for the first 5 months, you must be determined to have been, or likely to be disabled for at least a year. So if you are one of the lucky ones that is accepted when you first apply you may have to wait for benefits to start. All back due payments are from the date you are determined disabled or at the judges discretion.
A lawyer can charge 25% of back-due payments up to a cap of 6,000.00 it is completely possible to file on your own, my suggestion is to get a lawyer but another way to approach this is to hire a lawyer only if you are denied after the first application. I will advise you that a lawyer is most active in your hearing phase but can make sure your initial application doesn't have any mistakes.
You will receive Medicare as a part of your disability determination. However; for reasons I don't fully understand you have to have been disabled for two years before Medicare is active. Which again means if you receive your determination before those two years (date of onset not necessarily date of filing) then there may be a gap in your coverage. I'm not going to cover that here. Because it's complicated and I'm not completely educated on that. This is where lawyers are beneficial, also Medicare part B and part D...
Application Process
The SSA has a huge backlog of cases, so understand that this is often a very lengthy process. On average a typical case can take 3-5 yrs. Be Prepared.
This is typically how a case proceeds here in NM.
File for disability wait about 6 months and receive a denial letter, then you will file a request for reconsideration which can take 3-18 months to receive another denial, you would then request a hearing (at this stage you could request a compassionate circumstance or dire need and receive an expedited hearing, but if you're not dying or homeless it's unlikely) you will wait another 6-18 months for your hearing date. About 3 months after your hearing you will receive a determination (this is when most people win benefits). If you are denied here you can choose to appeal that decision with the appeals court, if it is again denied you can appeal with the district court. Some people choose to start over and re-file at the appeals stage. There are some beneficial reasons to re-file and some detrimental ones as well, please talk to your lawyer. Each of these stages are time sensitive and if you exceed the amount of time or miss the appropriate paperwork/documents you must start the process over.
Apply-denied-reconsideration-denied-hearing-approved *mostly -I know about two cases this year that didn't follow that logic and two cases that were approved initially.
Understand that SSA denies something like 90% of initial applicants in an effort to deter people from going on disability and to weed out those trying to take advantage of the system. Getting denied initially does not necessarily mean anything, and 75% of applicants that get to the hearing phase get benefits. I don't know how accurate those statistics actually are but it helps to understand the process anyway.
Why do some people get it right away and others don't?
That is a tricky question, what I think I know is this: the older you are, the less work experience/skills, and education the more likely you are to receive it initially because they recognize that obtaining employment is already more challenging. So for example someone age 50+ with minimal work history and a high school education would be more likely to get approved initially than someone in their 30's with multiple technical skills and college degrees. SSA also has a grid system they use to determine disabilities without a hearing, the more boxes they can check the more likely you will receive benefits.
Tips for proving your disability
When you are filling out your disability application it is important that you be very detailed. Don't try to fit everything in the spaces provided it's okay to attach extra pages. Err on the side of too much information rather than not enough. Be very specific about your limitations and exactly how they affect your daily living and work experiences.
List every illness, symptom, and diagnosis you have even if you think they are not relevant. List every modification you have ever made for your symptoms.
Sometimes there is a better, more acceptable, or functionally limiting diagnosis, you might not know what it is so list everything.
Be honest and don't exaggerate but do describe everything as if it is your worst day.
See your doctor regularly, even if you have all your scripts and have no new complaints see your doctor every few months. Do this even after receiving your benefits because it will keep all your records up to date and ssa will see that you are actively contributing to your health care. Remember just because you receive benefits doesn't mean you will always have them, they can do re-determinations on your case and likely will. Good documentation is extremely important.
Make sure that you have an actual diagnosis. A lot of people think they do but when they get to their hearing find out the doctor has never actually documented and coded a diagnosis.
Know what is in your medical records!!!! Get a copy for yourself and take the time to review it.
Be compliant, follow your doctor's advice, and when you can't very clearly communicate the reasons (side-effects, therapies are too expensive, concerns, ect.) make sure it is well documented along with whatever advice they give you as follow-up. Take advantage of any services that will help with compliance issues. If a drug is too expensive, find out if there is a generic or if there is a program that will help you pay. Some physical therapy programs/gyms have lottery programs for membership fees. Free clinics and low cost clinics are available as well as programs like Medicaid. A judge will deny benefits if they believe you haven't tried everything that could improve your condition. Document everything.
Before your hearing keep a daily pain/symptom/limitation diary for about a month, this will give a bigger picture of what your limitations are.
It's ok to read certain information from notes like dates, names of medications, diagnosis names and things you can't recall or might have trouble saying. Don't read your symptoms off this same list, I know it can be overwhelming to try to recall in a moment all of your symptoms but sometimes they take it to mean you can't remember them because you're not feeling them. Not that the act of saying them all is difficult. It's best to start from your head and go down to your toes or list the biggest complaints first. Maybe practice this out loud before so you feel more comfortable with it. We are so conditioned to ignore that when we are on the spot our minds can go blank and there are so so many it can be hard to know where to start. If a few of them have difficult names or you think your likely to stumble it's probably ok to write a few just to keep you on track, just make sure you're making more eye contact than reading. I know I've been asked that question by people before and I can actually feel my brain skip from the overload of trying to take In everything at once.
Get your doctors to fill out a functional capacity form or write a letter supporting your disability claim, this can be difficult and sometimes a solution to this is to ask if they will sign the form if you fill it out, remember they are usually over-worked as is and may be reluctant to do these.
Make sure that your doctors and other providers are responding to requests for information and medical files. You have a case worker and it is completely ok to ask them if you need to get more information, your lawyer should also be able to help with this.
You can ask former employers, friends, and family to write an affidavit testifying to your condition and limitations. Keep these under two pages and limit them to 4 or less. Many judges disregard testimony but it might help paint a bigger picture, especially testimony from people that saw you when you were more productive.
Be careful what you discuss with your doctors; like vacations/travel, home projects, possibly even volunteering or other activities you might do in rare moments. If you do talk about these things make sure you also talk about how your illness impacted you during those times. For reasons I don't understand going on vacations is often used to show you aren't disabled.
* Credibility -understand that because of the subjective nature of our condition a judges job is to establish your credibility. Be aware of contradictions, if you said you cannot sit for more than fifteen minutes at a time and you sit for an hour in front of a judge your credibility might come under fire. I know our symptoms can wax and wane but a judge has to take a snapshot picture of your life and render a decision, don't make it easy for them to discredit you. Be aware that most of the questions they will ask you they already know the answer to. They are trying to establish your credibility so take your time and answer honestly, again, know what's in your medical records and make sure you know your limitations well enough to clearly communicate them. Credibility is huge in a determination that relies on a patients description of their symptoms with no measurable evidence.
Working during your wait for benefits
This is a huge conflict for some, you are in the process to prove you cannot sustain gainful employment but it can take years to get benefits. Some people don't have the resources to support themselves during this time and end up in a difficult position. Some people make repeated attempts to return to work and fail.
While a failed work attempt can further prove your inability to work you are risking a judge believing you are capable of enough work to be considered gainful activity. I don't know what the limits are exactly but my recommendation would be not to work during this time. Pool all your resources, ask for help, move in with your parents, whatever you have to do. This can be a very hard period to get through but it would be really sad to loose it because of an odd job you did in a moment of desperation that you more than likely paid for physically anyway. It takes commitment and sacrifice to see this process through and you are much less likely to be penalized if you try returns to work after you have established benefits. If you are truly confident you can re-enter the work place than please do that, but if you are not don't risk it.
Don't apply for unemployment, unemployment implies you are capable of working.
Medical Evaluations and Vocational Experts
In some cases you may be required to see the SSA doctors during the application process. Often there is a physical exam and/or a mental health evaluation. They are hired by the SSA to evaluate you and testify on your claim. Let's just assume their job is to provide evidence you are not disabled.
To me these exams are quite the mystery, sometimes they do these because they feel they don't have enough information on your condition. In the case of mental health if you have put anxiety, or depression on your application but you don't regularly see a therapist then they would need to confirm your diagnosis or symptoms. This I understand a bit better than the medical evaluation, I have a hard time understanding how a doctor who sees you for 15 minutes and never touches tender points could make a better decision on your condition than your primary care. Also since they don't do repeated tests they can't really document exertional malaise or delayed onset symptoms. I'm unsure how much weight these testimonies have. You may want to discuss this with your lawyer. I know that sometimes you can get your PCP approved to administer the evaluation, how? I'm unclear on the details.
Vocational Experts are a bit different but very common in fibromyalgia/CFS cases. Their job is to take into account your age, skill set, education, past work, and from there they propose hypothetical jobs they believe you would be qualified for and then they determined if your limitations would allow you to do that job. The book for job descriptions is dated back several decades and allows for every possible variation like nut-sorting, data entry, sedentary work, ect... You/your lawyers job is to provide an argument that proves you can't do any substantial gainful employment.
Often times the vocational experts will try to word things in tricky way in order to get an admission of ability or omit possibility. Pay very close attention to their usages or adjectives and wording. For example if you have chemical sensitivities that affect you like breathing problems or severe reactions to perfumes. The vocational expert might say this person cannot tolerate concentrated exposure to fumes and chemicals. But in order for it to rule out work entirely they need to say this person cannot tolerate even moderate exposure to chemicals. concentrated would imply high doses where moderate would account for daily exposure. This is where understanding exactly how your limitations affect you is important.
Whew. I know that was a huge dump of information hopefully it helps you through the process if anyone has questions just ask and I'll will respond as best I can.
Just for full disclosure I am still waiting for my hearing date. I applied I believe March of 2013, 3 years in and no hearing scheduled yet, but I wish I knew this much when I applied because I know I could have clarified a few things on my limitations and maybe sped up the documentation processes... Maybe.