Thursday, April 7, 2016

My Experience with Disability

I have blogged before about my ongoing struggle to make a living while having CFIDS, for which my SSDI claim was in the initial phase of being approved in California and subsequently denied when I moved to Florida.  People often ask, "How could that happen?!" and, "Why don't you get a new attorney and apply again?"  Because these questions come up frequently, I have decided to blog about it now for reference, rather than having to repeat myself over and over.  So, here is the story of what happened, how SSDI works, and why I can't reapply now.

I described in a previous post how I suddenly went from being an athlete, a dancer, the Poster Girl of Good Health, to being totally disabled by CFIDS in 1992 while living in California.  When I was about to be fired from my job due to chronic infections and having used up all my sick days, the doctor put me on CA State Disability, but I didn't want to be disabled, I wanted to work.  

While convalescing I took a correspondence course and became certified as a Medical Language Specialist, a job that I could potentially do at home.  I got a part-time job but it required working at an office, and soon the same issues with recurrent infections, pain and extreme fatigue interfered with my work, to the point that even four hours typing a day became too much.  I was so weak that it was a major ordeal just to take a shower, brush my hair and drive to work, and by the time I got there every day I was already exhausted.  When State Disability ran out, the doctor informed me, "You will never work again, we need to transfer you from State to SSDI."

I didn't need a lawyer to apply for SSDI in California, probably because I was already on State Disability for a full year.  I only had to sign a few forms and my doctor submitted them to Social Security.  He then sent me to the CA Chief Medical Examiner's office where a doctor thoroughly interviewed and examined me, drew blood for still more lab tests, went over my medical records and finally concluded, "Yes, you are Totally Permanently Disabled.  We're putting you on SSDI.  Don't worry, you will certainly be approved.  Please sign here."  I signed the forms he gave me and as far as I knew, that was that.

My father said that I would not be able to live on SSDI in California due to the high cost of living, and knowing that he was probably right, I moved to Florida to be closer to family.  I then contacted Social Security to give them my new address and find out the status of my Disability benefits. They informed me that my SSDI application would be transferred to the Florida DDS (Disability Determination Services).  They sent me a mountain of paperwork to fill out, which I managed although it was very exhausting.  Soon thereafter I was notified that my claim was denied?!  I called and told them that there must be some mistake, because the State of California Chief Medical Examiner had already declared me Disabled, and they replied, "He has no jurisdiction in Florida."  

At that point I got a lawyer on contingency who was highly recommended by the CFIDS Association, as was my new physician.  We appealed and I had to fill out another mountain of paperwork which seemed to be a repeat of what I had already sent previously.  Despite the lawyer's help and my new doctor confirming the diagnosis made by my CA doctors, I lost both appeals.  I called the SSA in shock and asked, "How is this possible?!  I cannot do my job.  I can't even type a few hours a day anymore, and the State of CA already declared me Disabled!"  The representative answered, "In Florida you are not disabled if you can talk on the phone.  You could work as a telemarketer from home." *

To this day I still do not understand exactly how it happened.  It is not necessary to reapply for SSDI if you move from one state to another once your benefits have already been established.  I can only assume that my case slipped through the cracks because my application was just in the very preliminary stages with the California DDS when it got transferred to Florida.  As to why the CA Medical Examiner was so sure my benefits would be approved, only to be denied by the FL DDS, this too is a mystery.  Although SSDI is a federal program and the states are supposed to follow the same criteria, my lawyer said they don't and some states are much stricter than others, which I have also heard from other applicants.  There was another Florida case denied around the same time as mine, a quadriplegic gentleman who had figured out a way to type by holding a pencil in his mouth to touch the keyboard; he lost his case "because he can type."

I've been asked why I don't get a new attorney and file for SSDI again.  There are several reasons for this but, primarily, my condition has since improved to the point that I am no longer "disabled," at least not by any legal definition.  After my case was denied, when mainstream medicine could do nothing to help me and I had no other alternatives, despite my skepticism I turned to holistic medicine which, to my great surprise, was quite effective. My doctor was amazed at my recovery and released me to return to work at home part-time, although he said I would need to hire a maid because, "You won't be able to work part-time and still clean house."  And he was right, not that his opinion had any impact on the decision by the DDS.  I am currently working nearly full-time and my house is filthy.

From the SSDI standpoint, the fact that I've been working very successfully from home via telephone since December of 2014, in addition to teaching yoga and pilates on the side (!), automatically disqualifies me for Disability, because one of the requirements is you have to be "unable to work for at least a year."  And what does "unable to work" mean?  As Nolo explains, "The fact that your doctor may have advised you not to work, or that you feel too ill to work, does not necessarily mean that the SSA will agree that you are disabled."

This is an important point about Disability that many people fail to understand.  I myself am familiar with the criteria from both sides of the issue, as a patient and from my career in medicine.  After I recovered sufficiently to return to work, part of my job was doing summaries of medical records and exams for Worker's Comp and SSDI applications.  Let's be clear:  Your subjective complaints are irrelevant.  No matter how horrible you may feel; if you have painful knots in the muscles of your neck, back and shoulders made much worse by your typing job, and/or your entire body hurts; or if you wake up feeling like you haven't slept, in a panic** wondering how you will find the energy to accomplish your daily responsibilities, etc., it makes no difference.  SSA/DDS does not care if your house is filthy and there are piles of dishes and laundry all over because you don't have the energy to both work and clean.  All they care about is, can you perform the functional duties of a job, and if not your regular job, any job?

Per SSA, Providing Medical Evidence To The Social Security Administration For Individuals With Chronic Fatigue Syndrome"The medical condition(s) must be shown to exist by means of medically acceptable clinical and laboratory findings. Under the law, symptoms alone cannot be the basis for a finding of disability, although the effects of symptoms may be an important factor in our decision whether a person is disabled...   Evaluation will be made by a disability examiner working in the disability determination services (DDS) in the State in which the claimant lives."

The DDS will base their decision on laboratory evidence (which there is none for CFIDS, the causative pathology as yet unidentified) and objective "functional limitations."  The latter are specifically defined relative to your job duties and measurable in terms of weights and range of motion.  For example, if you had a shoulder injury and you cannot reach over your head or lift a certain weight above chest level, or if you had knee or back surgery and you cannot bend, squat, lift, climb, etc., or if you have nerve injury impairing the use of your hands, or some other physical limitation, this will be documented by DDS.  They will ask your employer to accommodate you, and if the employer refuses, they may send you to vocational rehab to train for another type of job.  If you have foot pain due to flat arches, or knee pain due to some injury, and your job requires being on your feet all day, you will be fitted with orthotic shoes or knee brace, sent back to work and told to sit down during rest breaks.  If you are "merely" in pain without any fixable injury, they will tell you to take NSAIDS and return to work.  

"Brain fog" (a common symptom of CFIDS, fibromyalgia and some related illnesses) will only be considered as a functional limitation if it interferes with your "ability to understand, remember, and carry out simple instructions."  So, for example, if you are a Ph.D. college professor and your brain fog prevents you from publishing or being able to lecture successfully, no problem; DDS will say "you can still work at the grocery store" alongside of the developmentally delayed bagboy.  Again, Disability is not based on whether you can continue doing your normal profession, but rather, if your functional impairment prevents you from doing "substantial gainful activity" of any kind.

Now, I probably should mention at this point, the criteria are slightly different for Mental Disability, but the same general standard of "functional limitation" applies.  The interviewing psychiatrists will carefully evaluate whether, for example, you are able to interact with the examiner and answer questions in an appropriate manner, understand, remember, pay attention, and follow simple instructions.  They will also make note of antisocial, irrational or psychotic personality traits which would interfere with your ability to get along with bosses and coworkers such as combativity, impulsivity, poor judgement, narcissism, delusions, paranoia, etc., and document your prior history of job losses due to such factors.  Although these are not physical impairments, clearly if you are unable to follow instructions, communicate effectively, or get along with others, or if you consistently panic, burst out in a rage or tears under any kind of pressure, your functional ability to hold down a job would be extremely limited.

How do the above considerations apply to my current situation?  Keep in mind that when I applied for SSDI over 20 years ago, I was utterly sick, weak as a kitten, suffering from chronic opportunistic infections, and documented as TPD by the State of California, and yet because I could still talk on the phone at home, was deemed "not disabled" by the Florida DDS.  Thanks to holistic medicine I am now much improved!   The fact is, on a good day I am probably in better shape than many "normal" people.  In terms of "functional capacity" I can carry 5-gallon water buckets (50 pounds) one in each hand while walking through deep mud, throw around hay bales and sacks of grain, saw boards, set fence posts, dig ditches and shovel hundreds of pounds of shit, sand or crushed concrete, and perform other farm activities.  

Of course, good days are sometimes followed by very bad days, as overexertion can leave me bed-bound for 48 hours thereafter, a key identifying symptom of CFIDS reflected by the new term, "Systemic Exertion Intolerance Disease."  But on most days, if I were to be tested for range of motion and physical strength per DDS functional standards, I would pass with flying colors - especially since my current job as Spiritual Advisor demands no such abilities.  It is difficult to imagine a degree of "functional limitation" that would preclude sitting in a chair talking on the phone, which I was able to do even at my sickest.  I will admit I've missed a few days of work due to excessive "brain fog" which interfered with my ability to communicate effectively with my callers, but thankfully such days have been few and far between.  If the "brain fog" were a constant condition then yes, it would indeed be a "functional limitation."

People sometimes ask, since I'm so much better and stronger now, why can't I just go out and get a "real job" (assuming there were any decent jobs around here, which there aren't)?  I could probably get a job, but would not be able to keep one that had regular hours and a finite number of sick days.  Again, I have good days and bad days.  On a bad day it is hard to get out of bed, but as long as I am working at home, I can drag my tired ass to my desk and receive calls.  If I had to take a shower, get dressed, do my hair and face and commute into town, it would be nearly impossible to be there on time consistently, especially since my condition demands at least 10 hours of sleep and I have never been a morning person.  

But, the real deal-breaker is that I continue to have a dysfunctional immune system, which is why SSA acknowledged that I would need to work at home.  Although my immunity has improved somewhat since I switched to herbal remedies and stopped taking pharmaceutical antibiotics, I remain very vulnerable to catching any and every contagious illness and it affects me more severely than other people.  I would probably use up all my sick days within the first few months in a retail or office environment, which is how I lost my job in 1992.  In addition, when my immunity is low my face breaks out in painful purplish-red subcutaneous nodules which would take an hour to attempt to cover with makeup so as to be halfway presentable in public.  Facial appearance is a very real factor in employment which disproportionately affects women, but is completely overlooked by SSA/DDS criteria.

I am currently in a sort of "employment limbo," being too healthy to qualify for Disability but not well enough to be able to hold down a regular job outside of the home.  I do sometimes wonder what would happen if the critics of holistic medicine are successful in getting herbal supplements banned, without which my health would certainly fail and I might not even be able to do my current job due to exhaustion, infections and brain fog.  Would I then become a candidate for Disability?  

Well, maybe, but there are serious logistical concerns.  One is the five-month waiting period from the date of application, before you can receive SSDI benefits.  You need to have some other means of support during those five months (and any additional time it may take for your claim to be approved).  In California I was on State Disability prior to applying for SSDI, but Florida has no such program.  Since I live paycheck to paycheck, if I were out of work for even a few months, I would be homeless.  And even if I did manage to somehow make it to the sixth month, I would still lose my home since SSDI benefits are not enough to pay the mortgage and other bills.

Another concern is that in order for an SSDI claim to succeed, as this Disability law firm explainsmedical documentation is required, including all laboratory and medical records going back to the beginning of your diagnosis.  I have no idea where all my previous records from California may be.  I never received copies of them.  In terms of more recent medical history, I have not see a doctor since 2007.  Even though I now finally have insurance through the so-called "Affordable Care Act," the $4500 deductible makes it useless to me, and I would lose health insurance altogether if I could no longer work, as Florida did not expand Medicaid.

So that is what happened with my original SSDI claim, why I can't qualify for Disability now despite not being well enough to work a "real job," and why I am so extremely thankful for my current position as Spiritual Advisor which I can do from home via phone.

In summary, then:

1.  My original claim was denied by the State of Florida in 1994 despite being very, very sick. At that time I met all the requirements for SSDI.  I had been unable to work for over a year and was already on California State Disability, with complete medical records, laboratory studies and documentation of Total Permanent Disability by the California Chief Medical Examiner.  I had a great lawyer who specialized in CFIDS.  Nonetheless, my claim was denied because I had no "functional limitations" that would prevent me from working by phone at home.

2.  I am currently in vastly improved condition, physically quite strong, and have been working very successfully nearly full-time since December 2014, doing exactly the job that Social Security determined me "functionally capable" of doing:  talking on the phone at home.  I now have no medical records, cannot afford to see a doctor and have no treatable complaints to document.  Do I still have a disability?  Yes.  My immunity is impaired, I have "Systemic Exertion Intolerance" and on a bad day I feel like total shit.  Does that qualify me for Social Security Disability?  No.

3.  As for the suggestion that I ought to reapply for SSDI anyway on the very remote chance of being approved the second time around, this would require quitting my fabulous job, which would result in losing my home worth approximately $350,000 because I have no other source of income with which to pay my mortgage, property taxes and other bills during the 5-month waiting period.  Even if I did manage to make it to the sixth month and somehow miraculously qualify for SSDI benefits, the amount would not be enough to pay the bills and certainly not worth the trade-off of losing everything I own.  Obviously, it would not be a good gamble.


* I could not, in fact, work as a telemarketer, but only because I suck at sales.  I actually did attempt to work as a salesperson for a couple of outstanding companies whose very high-quality and affordable supplements had helped me, and I failed miserably despite their providing me with thorough training.  My current job as a Spiritual Advisor does, however, involve exactly that:  Talking on the phone.

** Although interestingly, you can get SSDI for panic attacks.