A Little Advice

Well maybe a lot of advice.  This is how I won both SSD (social security) and LTD (private) disability insurance.  They aren't quite the same and require slightly different tactics.  Just to be perfectly clear I'm not a lawyer.  This is just my experience.

Some things to keep in mind:

• Even though SSA is a federal program each state has its own SSA office.  So while there are federal guidelines for obtaining SSD the actual speed and ability to do so varies from state to state. Turns out MA is pretty efficient.
• LTDs are typically supplied through work although some policies can be purchased directly by the consumer.  Hubby did this since he ran his own company.  LTDs are always a good idea!
• SSA's primary concern is that you can prove that your illness is interfering with your work.
• LTDs primary concern is that you are trying to rip them off so they want hard medical evidence that you are sick.
• SSA has a deadline of 120 days for you to submit your medical evidence once you submit your application.  It is normal for the first application to be rejected.  Expect it and appeal.  I've forgotten the deadlines involved here but do NOT miss them.  You can appeal up to the court level which takes roughly two years.  You can submit new medical evidence right up to the court date.
• LTD is a bit more complicated: you apply, they think about it and make a decision.  If your case is rejected which is normal then ERISA law kicks in and you have exactly 180 days to appeal the decision.  Once you submit the appeal they have 45 days to make a second decision.  If you are rejected again you can take it to court but beyond the appeal no further medical evidence can be submitted and the court case is solely one of breach of contract rather than a medical case.
• Write down all deadlines in bold letters in a place that you will see them all the time.  There are no grace periods! Expect to use overnight mail and fax machines a lot.
• Keep copies of everything!!  I must have close to $200 in copy fees at Staples but things get lost and it is a good thing I had copies of everything.
• Start some sort of filing system early in the process.  I get so brain fogged that organizing everything on a good day saved my butt when I had to find a lost piece of paper right now on a bad day.  
• I also had a running spreadsheet file with the date, doc and outcome of every single medical visit.  I also added in crashes and meds.  Again great way to keep track.  With the memory loss, I often had no clue when things happened or what happened. 

Here is the stuff I put in the packet I used to plead my SSD case for CFS (I won this on the first try):

1. Work
1. Resume: get very detailed including how much you sit, stand and the heaviest things you have to lift for your job.  Also include anything out of the ordinary.  In my case this included working in cleanrooms in bunny suits, bio-chem labs in lab coats and gloves and laser labs in goggles.  Remember these are office staff so they won't necessarily have any idea of what you actually do on a day to day basis in your job.  Heck, my own HR department had no idea my job was so physically demanding.  They told LTD that I sat at a computer all day and didn't lift over 25lbs.  Get detailed!
2. Training: list every workshop, certificate and self taught thing you've learned for your job
3. Last five jobs: this is required by SSA and include company name and salary.  I don't remember if contact info is required but I included it in mine. 
4.  Letters of recomendation: I included ones from several jobs.  I've had lots of bosses even at the same company so when things have gone particularly well I've asked for a letter of reference.  I've used them for promotions internally and I've kept copies of them.  I never thought I would end up using them for SSD.  I included them to show that I was a good employee and good at what I did.
2. Medical Evidence
1. Every clinical note from every doctor visit I went to.  Even if it wasn't flattering (i.e. the doc was clueless about CFS and said things like "everything was normal upon examination: should be able to report to work"  (yes one person actually said this).  I had to write to each place to obtain these and some places charged for them.
2. List of all providers with contact information.  This is why I didn't withhold any clinical notes.
3. Letters from my main providers stating that I was ill and couldn't work and why I couldn't work and how long they thought I wouldn't be able to work.  Affidavits are nice but not necessary for SSA.  I had one from my primary doc, one from my shrink and one from my chiropractor.  I chose these people because they all knew me before I got sick so they were best qualified to state how sick I was and knew the full effect of CFS on my person.  BTW, it helps if you show up to a few appointments at your worst so they know how crappy it actually gets.  Clean hair be damned.
4. Symptom diary: keep a diary for several months and log symptoms, meds, supplements, activities and food.   SSA has a rule that if you don't have sufficient medical evidence (meaning there is no definitive test for diagnosis) a symptom diary is an acceptable substitute.  Remember they are interested in how the illness impacts your daily life.  You have to prove to them that you are unable to function normally.
5. A print out of the CDC definition of CFS and a copy of the document from WPI stating that CBT and GET don't work.
3. Medical & Work
1. Detailed description of how the illness impacts your ability to do your job.  In my case I can't use a wheelchair in a cleanroom or bio-chem lab.  The shakes I get would be dangerous in any of these labs.  I can't walk or stand or reach or crawl all of which I need to do to perform my job as an engineering assistant.
4. Personal
1. Letters from friends and family stating what you used to be able to do and how bad things are now, i.e. how CFS has totally screwed up your life.  I had letters from my Mom, sister and hubby.  They talked about my being a gardener and a Toastmaster and a figure skater and how I was stuck on the couch and couldn't do anything.
2. Videos of a bad day.  I get neuro symptoms where I'm unable to walk or talk well and I start to loose my gross motor skills.  On one of my truly bad days my husband took video of me trying to talk and then of me trying to walk across the room while I was all wobbly.   I also included footage of me during a skating competition just before I got sick so they had a before and after comparison.

Stuff for LTD:

LTD is done in stages and this will vary from company to company.  Things will also vary depending upon whether the insurance policy is directly from the insurance company or whether the insurance company is just the manager for the employer's policy.  

In my case my work was a self funded policy that was managed by a big name insurance company.  Sometimes this can work to your advantage.  If you are friends with the right people at work you can have HR or whomever have words with the managing company and have your claim approved right away.  The place I worked was too big for me to successfully pull this off.  In fact my place was so huge it took a month to get in touch with the right person so that I could get a copy of the legal version of the insurance policy.

First stage:

Fill out the paperwork application.  Follow all the instructions.  In my case there was a telephone interview where the guy got all friendly and tried to trip me up and admit that I had been out in the yard doing stuff while claiming I was too ill to work.  He asked for a list of all my providers to date which I sent him along with the clinical notes to date.  I was also required to apply for SSD by a certain date.  To meet this deadline I applied on line which is NOT recommended with CFS.  It is a long and tedious process and I was cooked by the end of it and needed hubby to proof read everything I was typing.  Don't put this off to the last minute and use the paper forms instead.

Because I have CFS there was no hard medical evidence that I was sick.  It didn't help that my doc kept writing down that my exams were "normal" and not including the fact that I was still showing signs of viral illness.  Lesson learned: check the clinical notes, find out how your doc is documenting things and have them make changes if necessary.  Clinical notes tend to be riddled with errors particularly from larger institutions and they need to be fixed immediately because they become gospel.

My claim was rejected due to lack of medical evidence.  They said that all my symptoms were self reported and there was nothing in my medical record to support my statements.  They also claimed that since I twisted my ankle I must have been bouncing around doing stuff, i.e. well enough to work, and that I had taken myself out of work without consent from my doctor (hey this makes no logical sense but this is the insurance company) when in fact they never asked about it.

Stage Two: The Appeal

1. Start the 180 day clock.  Write down the due date in huge red letters.
2. Hire a lawyer.  I'm not kidding on this one.  This is a long tedious process and you'll need the help.  Yes, it has cost me $12,000 in legal fees but due to ERISA you HAVE to get the appeal right the first time since you aren't allowed to submit any more medical evidence after the 180 day deadline.  Also it is a cost benefit thing.  I spent $12,000 in legal fees but if I am disabled for life we are talking in the vicinity of one million dollars in benefits.  It is so worth it to get a lawyer involved at this stage.  Try to find one that knows about CFS or FM (it is similar to CFS).  Mine had done FM claims before so even though she wasn't as familiar with CFS she knew the procedure to win a claim.
3. Get as many medical tests done as needed to help with your case.  In my case it was virology, endocrinology, neurology, rheumetology, neuropsychology and a CFS specialist.  Also MRI of brain, CT of abdomen, UT of the kidneys and UT of the thyroid.  Another good one to consider is a functionality test that would be done at a physical therapy facility.  Make sure you do something to make you crash first so that when they test you you are at your worst.  There are some facilities that do this testing two days in a row on CFS patients to show how energy levels can't be maintained.  However, most places don't understand CFS so they don't get this and don't test for it.  However, you can always bugger the test yourself by over exerting yourself the day before.  By the time I found out about functional testing it was too late to arrange for it before the 180 day deadline.
4. Get a copy of the legal version of the company's insurance policy.  Normal policies have the exact definition of disability in them so you know exactly what evidence you have to produce to claim disability.  Mine didn't but that is another long rant about the arrogance of a research facility.
5. Keep things private.  Don't announce things on Facebook that would make the insurance company think you can function normally.  They will ignore the fact that you spent the next week in bed for that one night of fun.  Ask your friends not to post pictures of you on Facebook for the same reason.  Just because you have all of your privacy settings in place doesn't mean that your friend does.  Their photos of you might be in the public domain and if they tag you your party night is now out for all the world to see.
6. Don't do stuff in public that goes against what you are claiming.  They will hire private investigators.  It is cost effective for them to catch you carrying a grocery sack into the house.  Again they have no idea that you collapsed in a heap and had to sleep three hours afterwards.  All they know is that they have a photo of you carrying groceries when you are claiming that you can't lift a pencil.
7. Write a letter to the insurance company requesting all documentation of your claim including why they rejected your claim.  You have a right to these documents under ERISA law and I copied and pasted the law into my request letter.  While they didn't send me everything I requested I did get a lot of documents that helped me assemble my appeal.  BTW, there is a fine that can be imposed upon the insurance company for not producing these documents but that wouldn't come until the court case level of appeal.  Feel free to use the following text:

"Please mail me the following documents:

1. All documents used to decide the claim.
2. All documents rejected to decide the claim (clearly marked)
3. The clinical criterion used to decide the claim."

My appeal packet included:

1. Every thing I sent to SSA.
2. All the new clinical notes and test results.  We did leave out the stuff that didn't help my case such as the neuropsych report that claimed I wasn't that sick and I should have no trouble working and any documents that referenced that report.  We included the stuff about my twisted ankle since they used that in their rejection letter.  We used a document that clearly stated I stepped in a rabbit hole in my backyard.  Why the hell they take a nurse's notes over my word is beyond me but like I said medical documents become gospel even if it is self reported.
3. Affidavits from my primary doc, my CFS doc and my chiropractor all stating how sick I was, if they considered me able to work, diagnosises (sp?), and potential dates of symptom resolution (which for CFS is unknown)
4. Affidavit from me detailing symptoms and how CFS affects my ability to sit, stand, walk, carry things and perform my job function.  This took a week of back and forth with my lawyer and was almost 11 pages long when we were done.  We tried to capture everything.
5. Letters from my shrink.  She was very careful in stating that my depression was secondary to the CFS and NOT the cause of it.  Since the CDC has depression as an exclusion for the CFS diagnosis, her wording was critical to avoid the insurance company turning this into a mental health claim rather than a physical disability claim.  I did NOT send clinical notes.  My shrink and I discussed this at some length and neither of us wanted the notes released.  They were both too personal and they didn't have a lot to do with my claim.  Of course the insurance company did request them and my lawyer interceded for me since I was being slightly irrational and irate about the request.
6. All the FMLA (family medical leave act) forms my doc filled out for my work.  This again varies from workplace to workplace.  Mine happened to have a form.  My doc used it for both the three months of leave allowed by federal law and also as medical proof that I needed to take my full six months of sick leave.  This is the documentation that the insurance company failed to ask for and my company failed to provide to them.
7. The letter of approval from my work for FMLA leave and the email of approval from HR for short term disability.
8. My application for a handicapped parking placard.  My doc had written down a diagnosis of CFS on the form.
9. The letter from SSA that said they considered me fully disabled and that I was eligible for full benefits.  The fact that I was awarded my claim on my first try worked to my benefit.  There was just a court case in CA where a CFS patient won SSA but was turned down by LTD and the courts came down on his side since the SSA is considered the authority on these matters since they are supposed to have more stringent guidelines than the insurance companies.  In other words, if the government considers you fully disabled then you are fully disabled no matter how much the insurance companies bitch and moan.

Well, I'm sure I've forgotten something: my LTD packet was 3" thick.  I've captured the most important bits.  

Here is a website that I found incredibly helpful:

http://www.masscfids.org/disability

make sure you go through all the sublinks since this is chock full of information

Here is another treasure trove:

http://www.cfids.org/resources/legal-issues.asp

These people also answered some of my questions when I emailed them:

http://www.advocacyforpatients.org/

Of course there is also the SSA website:

http://www.ssa.gov/pgm/disability.htm