posted
Trying to decide whether or not to pursue Federal Disability through Social Security. I only saw Lyme listed WRT arthritis, which I do not have.
The application process is lengthy, to say the least. Should I even bother? I'd love to hear other Lymie's experiences.
Cheers
Posts: 261 | From San Mateo, CA | Registered: May 2005
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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.
Posts: 1 | From Warwick RI | Registered: May 2013
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
hi Denise
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.
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.
posted
Apply asap, you can start the process online. Meanwhile decide if you want to deal with the hassle. I got SSDI for CFS/fibromyalgia (also there was a lot of endo in the records). The process took 3 years and was very stressful. I ended up hiring a disability lawyer, which seems like the only way to get it. But once I got a hearing it was no big deal. I have immense medical documentation though, that helps.
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.
Posts: 207 | From san francisco, ca | Registered: Mar 2005
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& 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...
& 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.
Posts: 207 | From san francisco, ca | Registered: Mar 2005
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posted
Apply now. If you get it, they will repay back pay,ments to when you applied. I blew it by not applying sooner, forgetting to appeal, etc... It was that it was too confusing for me
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
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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MammaLyme
Frequent Contributor (1K+ posts)
Member # 1257
posted
Apply for it now. You have a waiting period of 5 months any way. You can do it yourself without paying an attorney. They get 25 percent of past due benefits. That is why they like to let it go on and on.
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
posted
That last post was a little inaccurate. The lawyers get a certain percentaqe of back payments--WITH a maximum of $5k-- So, they dont get any more by letting it drag out ! They also dont get paid at all until and if it wins. They are not getting rich, the ones Ive met. And, getting your back payments at all is much more likely with a layer
Debi
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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posted
I just recently got approved. It is important to apply ASAP. I applied in January and was aproved a few weeks ago.
I did not have to appeal their decision. It is a very lengthy app. I applied on-line. I guess I got lucky because the disability doc I had to see was a very honest guy and he stated he used to work on the other side where his job was to deny disability.
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
Posts: 75 | From Cincinnati, OH, USA | Registered: Mar 2001
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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 .
posted
Denise, BEFORE filing for SSDI, check out the below thoroughly ok!
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 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 when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address."
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Bettyg, Iowa
Posts: 1 | From US | Registered: Aug 2015
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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. 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
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. good luck.
Posts: 207 | From san francisco, ca | Registered: Mar 2005
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MammaLyme
Frequent Contributor (1K+ posts)
Member # 1257
posted
Go to the website for accurate answers to your attorney fee questions. I used to award disability benefits at SSA.
Is there a limit on how much I may charge for representing a claimant before the Social Security Administration (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.
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.
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.
posted
Currently, $5300 is MAXIMUM that lawyer/rep can collect.
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?
Posts: 1 | From US | Registered: Aug 2015
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posted
Denise, an online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Oops, forgot to paste it here.....
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
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! =======================================
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).]
Posts: 1 | From US | Registered: Aug 2015
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posted
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.
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
Denise, take it slow and easy so it is THOROUGH to help you be approved 1st time around ok.
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
Posts: 1 | From US | Registered: Aug 2015
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posted
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.
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.
Posts: 261 | From San Mateo, CA | Registered: May 2005
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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
Posts: 1 | From US | Registered: Aug 2015
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