The application process is lengthy, to say the least. Should I even bother? I'd love to hear other Lymie's experiences.
Cheers
If you're unable to work then I would encourage you to begin the process of applying.
There are things you can do to help the process go smoother.
It helps if you have good, past and recent, medical records and are seeing doctors regularly.
It also helps if you make an effort to find/keep a job through the local employment office's disability services and Department of Rehab. Especially if you are denied services by them because you are too disabled to work.
And remember, you can contact anyone working on your case and direct them to specific items in your file that may be overlooked.
The process is really long and detailed and exhausting, if you're not feeling well. But many times a person will wait 'til all resources are dried up before even applying. WHich can be a disaster if you are not able to work. So starting the process early is advisable. You can always stop the process or return to work as you are able.
The LDA has a good page on the web about Lyme and Social Security: http://www.lymediseaseassociation.org/SSI.html
ANd this site has been helpful to some as well: http://www.disabilitysecrets.com/
Hope this helps a bit.....
------------------
ziggy is right..start ASAP if you are unable to work. I was one of the ones who applied way too late, considering I havent been able to work for 4 years now. My financial situation was definitely in the diaster zone. But thankfully I was VERY lucky and approved fairly quickly, first-time without having to deal with the appeals process.
I posted recently about my experience and some things that helped me. I hope it helps you! Here's the link:
http://flash.lymenet.org/ubb/Forum3/HTML/012365.html
p.s. the best advice I received (esp when dealing with Lyme, CFS, FM, etc) is rather than focusing on the diagnosis (Lyme), thoroughly document HOW and WHY your symptoms prevent you from working.
Also with CFS/fibro there's no "cure". With Lyme I could see they might try to blow you off because it's a curable condition. supposedly.
You'd probably want to consult with a disability lawyer regarding that. Most people have to go through 3 appeals before getting it. So it's a battle. I had to go to their doctors and a shrink for assessment as well. And my doctor wrote numerous letters in my support.
But they pay retroactively from the date of filing if you do get awarded so file now.
Some tips: Suggested things to do to document.
& Keep a memopad or index cards and a pen, pencil, crayon or quill if you have to, and record things as soon as you can, or as they occur. Have a stack, in car(s), bathroom, other rooms, and places most frequented. Date and time of occurrence. Do NOT say to yourself,"This sign/symptom is so intense, od bizzare that I won't forget it--to record it when I sit down to complete the app.; see the doctor, etc. "
& Video tape: If possible get a camcorder with a remote control so you can focus on the scene in which action(s) your trying to capture will most likely spontaneously happen. Walking into door jams; breaking that plate while transferring plate to rack from basin; That roast you left i the oven over night. Ever run a washing machine through a cycle, except that you hadn't put the clothes in? Meant to put the dryer on, but forgot to? Lifted a hal-gal. of juice to pour into a glass or mug and you over poured, maybe knocking the glass/mug over with the force of the liquid coming out of teh carton; car keys go flying when manipulating them in hand? Dropped keys, mugs, else knocked them over, say when placing them down, and when moving arm away your hand knocks the mug/glass/other. Can't retain the number that the 411 operater, gave you, or even record it on paper AS the operator is giving it to you(no retrieval)?
Can't find the object that is/has been on your person all along? Put the tea kettle in the frig? Opened the freezer/frig. and found something in there that doesn't/didn't belong there? when closing frig door, got your thumb,or even hand caught in the door handle,perhaps even spraining it? Left/didn't pick up the baby from...?
got a call from someone 4 hours after you dropped them off, and you were supposed to have picked them up after 'X' minutes.
If I tried to consciously reproduce an action, or sequence of motions, demonstrating some lyme symptom/sign because I didn't have the camera on at the time, then I couldn't do it; the very thing I tried to reproduce would NOT happen!
You may have to rewind the tape many times, and tape over non-revealtory actions, or whatever your trying to capture,or else you be spending a lot of money on tapes.
This is just to help you recall things to get you started on teh app. process. ;Transposing letters in a word; omitting letters; adding letters; had to pick-up a dictionary 4-5 times to finally spell a common word like,'individual' correctly?; Not sure what year it is?;
Save all arithmetic mistakes.
& A tape recorder, as many as you can get a hold of, including that old one thats been buried somewher for the last decade.Keep one with you in your car. Record your speech production: slurred speech; can't find the right word; inaccurate description...
quote:
Originally posted by pq:Some tips: Suggested things to do to document.
& Video tape: If possible get a camcorder with a remote control so you can focus on the scene in which action(s) your trying to capture will most likely spontaneously happen. Walking into door jams;
...
teh app. process. ;Transposing letters in a word; omitting letters; adding letters; had to pick-up a dictionary 4-5 times to finally spell a common word like,'individual' correctly?; Not sure what year it is?;
Save all arithmetic mistakes.& A tape recorder, as many as you can get a hold of,
did this actually help you get ssdi?
My experience is that this kind of thing typically backfires.
Outside opinion by professionals doctors, physical therapists, shrinks, employers are probably more effective.
Not that they aren't useful tools to keep track of things...but ssdi basically thinks you're trying to con them, also they'll possibly tape you themselves...
I had to explain a vacation.
If you've displayed a willingness to try to work, once you get a face to face hearing it might help, before that point it seems to not help especially if you have a college education or so claimed my disability lawyer.
Just be completely honest. And describe your symptoms on your worst days not your best days.
Get help. Get a Soc Sec lawyer before you apply. They get payed if and when you areawarded it.
I am on Soc sec disability. It took along time, and more than one apeal till it got to a hearing. I think that having a disability lawyer, having a LLMD who wrote a realy good letter/report, and maybe also that I flunked my spec scan, were all factors in this. Maybe luck too.
Im not as good as I should be for documenting. I did work while I was trying for disability. It was 1 6hr day, once a week, seasonally. About 17 6hr days a year. I do have a degree. Engineers dont usually work seasonally at the farmers market while they fall deeper in debt every month. You'd think this would make sense to them sooner. But, I think they just keep saying no for a while, hoping you'll give up.
My diagnosis I am fully disabled for is lyme disease.
good luck
I worked for SSA until I got really sick with lyme. I was lucky and got to take a buyout. Remember, Social security disabilty wants to be takeen away by Bush. Make Congress and Senators pay into Social Secuity. That way, it will help the fund stay solvent. Bush took the money out of the trust fund for Iraq. There is no crisis. They just do not want to pay it back since they are all wealthy, they do not need this.
Get it now. My daughter got it for lyme 4 years ago. You must have a good and thoroug medical history and then it is no trouble.
e
Debi
Right now I cannot walk without the use of a walker so I appeared very disabled!
I know my case decided on quickly. I have heard horror stories about getting approved. Like I stated earlier apply ASAP!
Good luck!
Karen
Burn, No. I did not submit video of walking into door jams. I see your point about the perception of a con. Perhaps this should not be done. I have recorded myself though, but only after I had received ssi, and for the purpose demonstrating seizures or pseudoseizurs, in an effort to document neuroborreliosis.
If its disadvantageous to submit video then I don't recommend it, unless something is very dramatic. I don't know of anyone ever did this either,i.e. recorded seisures, breaking, and dropping dishes.
These suggestions were not intended to con anyone, but to document .
back later, inhurry
I've been in the SSDI process for 5 yrs. 8-05! Having my 2nd ALJudge hearing 6-16-05. If you do NOT have the willpower to go thru this stressful crap, do not even apply. It will drain everything out of you.
I had Phoenix fibro/cfs lawyer, Scott Davis, for almost 4 years when he quit me after my lyme dx! He never told me he could not represent me in FEDERAL/CIVIL court after appeals council denies me. I do not recommend him; his office screwed many things up for me including NOT sending a detailed brief to appeals council on ALj's denial of my 1st claim!
I wished I'd known of this below site when I started, then you could be approved 1st time on 1st STEP....a miracle! Don't let anyone kid you otherwise.
IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS
This message is sent upon subscription, and again monthly.
Please let the moderators know if any of the links have changed.
There are several links found by clicking on 'Links' on the
website or by going directly to http://groups.yahoo.com/group/Disinissues/links
There are many more links, as well as advice, in the "useful" messages
in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues
and click on Files.
BETTY NOTE: Look for the female MD's DETAILED BACKGROUND in the links. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
These links are a compilation of several areas of interest which are
commonly requested and mentioned. They reflect the collected wisdom
of this group. Check them out - you just might find the information
you were looking for! Take a look at Files that are not specific to
your situation, because they might be helpful anyway - what works for
Social Security may work for LTD claims, what applies to CFS may apply
to your medical condition.
The Welcome Message and Group Guidelines are also in Files, if you
need a refresher on how this group works.
You must register with Yahoo to use the website, but note:
Be careful not to permit your address to be put into the directory
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Contact the moderators at To reach the list moderators, write to: DO NOT FORWARD ANY MESSAGE FROM Disinissues NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE Bettyg, Iowa
If its disadvantageous to submit video then I don't recommend it, unless something is very dramatic. I don't know of anyone ever did this either,i.e. recorded seisures, breaking, and dropping dishes. These suggestions were not intended to con anyone, but to document . Oh no didn't think you were trying to suggest any of us are looking to con...just my experience with SSDI was that they assume that you are faking it until you prove otherwise. So I'm not sure they'd appreciate video. I hope I don't ever have to go back on the disability though as it's not nearly enough to live on and pay for treatment. Persistance is the name of the game. Is there a limit on how much I may charge for representing a claimant before the Social Security Administration (SSA)? SSA's authorization is not needed for payment of out-of-pocket expenses a representative incurs, such as the cost of medical and vocational exams. Good luck with your filing. You need a doctor to write your letter to state you are totally disabled for all work. Denise, Ziggy and BettyG have some of the best sugesstions. I waited 18months - 2yr. before applying, by which time I was too disabled cognitively, and neurologically to get things done, the in normal time frames it would take to do things. Couldn't retain even the extension number(a long one) for the ssa person I was to talk too. Couldn't retain even more than 2 digits of a number. So start as soon as possible with the application process, before you get too disabled to take/accomplish the necessary steps in this process in the time frames needed. Make use of all check lists of symptoms found on lyme sites. There are many that you will not have because they occur months to years down the road.
Mammalyme, question for you. I/others signed up with our lawyers under the former max $4200, and didn't know anything about the $5300 until we have an ALJudge hearing. If WE do NOT sign a new form for the new amount, is the $5300 given to the lawyer/rep anyway?
Oops, forgot to paste it here..... Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail? Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM..... Also after this article are the following articles: WHAT COULD BE CAUSING DELAYED-PHASE FLARES? BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS.. TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF. MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also.... bettyg, Iowa [This message has been edited by bettyg (edited 15 May 2005).]
bettyg
Also be sure to check the ADULT IMPAIRMENT LIST at SSA's site. Read thru their 14 sections to see which applies to you, and look for the MEDICAL EVIDENCE in your drs. files YOU attach PRIOR to make sure they are well-documented. We're all here supporting you! bettyg, Iowa
I think it's going to be a challenge to get disability since it's days of fatigue which keep me from working; days when I have to sleep most of the day or take naps all day long. On good days I'm pretty capable but no employer would take me for full time work with the number of days I'd have to stay home. I'm going to start documenting this in my Lyme calendar. I'll also get my husband to write an affadavit. I am so grateful for all of you and your support. The road is a lot easier with your support.
Yes, I know; it is overwhelming now to type this all up. Go into the files section in disinissues area, and find the template for the female dr. Copy/paste what she provided there as her evidence to your word processing. Use what you can of IDENTICAL symptoms you have with hers. Delete what doesn't apply. Add your own NEW stuff hers didn't cover. Another thing I recently did on mine this past month was show a table of their APPROVED adult impairment codes that apply to me, by dr. & appt. date ... then quoting what the drs. said. The more you do here will make it easier for DDS to approve you vs. deny you. good luck! My 2nd admin law judge hearing was 6-16-05; NO answer now for 2-4+ months. During the session, he said he's read my entire file and was going to approve it plus the voc rehab person said I could NOT work in any type of job at all. I clarified what she said & he said he was going to approve me IF he chose that hypothetical situation. But now he's going to reread my entire file again. Earlier I also asked him to reopen my 1st since my 4 skin biopsies were NOT diagnosed correctly for my late-stage lyme disease. bettyg, Iowa
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Posted by burnbitter (Member # 7088) on :
quote:
Originally posted by pq:
Just a thought, I didn't actually have any experience with it myself. They were just very skeptical through the whole process.
Do document for yourself and them, what a normal day is like for you. What compromises do you have to make that a healthy person wouldn't. They will ask this during your hearing if you have one. The judge I saw asked my why certain types of jobs wouldn't be possible for me. And as I had in fact tried to do a couple similar ones, I had an answer and example.
I also added that I personally wanted to work and would return to it as soon as I could. Which I have too 
good luck.
Posted by MammaLyme (Member # 1257) on :
Go to the website for accurate answers to your attorney fee questions. I used to award disability benefits at SSA.
Answer
Yes. A representative may charge and collect no more than the amount SSA authorizes in fees for representation of a claimant in a matter before SSA. This is so whether the fee is charged to or received from the claimant or from a third party, such as an insurance company. See Social Security Ruling 85-3 (http://www.socialsecurity.gov/OP_Home/rulings/oasi/39/SSR85-03-oasi-39.html) for a description of the only exception.
Posted by pq (Member # 6886) on :
Posted by bg (Member # 46416) on :
Currently, $5300 is MAXIMUM that lawyer/rep can collect.
Posted by bg (Member # 46416) on :
Denise, an online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance!
=======================================
Posted by bg (Member # 46416) on :
up for Pippy's questions on SSDI, etc.
Posted by DeniseS (Member # 7276) on :
Wow, thanks for all the info. I have started the online application process. It's all so overwhelming. And I'm doubting how much disability I have. I'll ask my doc at the end of the month so I can get a reference point as to where I am in the schme of things.
Posted by bg (Member # 46416) on :
Denise, take it slow and easy so it is THOROUGH to help you be approved 1st time around ok.
Posted by DeniseS (Member # 7276) on :
Thank you so much for all the great input and links. I started the electronic application and then had a phone appointment with SSA. I'm going to get a neuropsych asessment within the next two weeks. I photocopied records today. The hard part is going to be writing what I saw each doc for. Gathering together all the symptoms over all the years is a big job.
Posted by bg (Member # 46416) on :
Denise,