Social Security Chat Session



Aug 30, 2002

Hello All,

This evening Jim joined us to answer more questions about SSDI.  As always, it was very informative.  For those of you who could not make it this evening, he will be back next week (9-5-02).  Please mark your calendars and plan on joining us. 

Here are the key questions and answers:

Denise (MeanOleReadHead66)
Would getting CP listed with SSA give it anymore credibility in the medical world (especially ER trips)?
Jim (SSDCavalry)
Perhaps.  I can't give you a definitive answer, because I am not a member of the medical profession.  That said, it does add credence to, as Social Security now gives credence to chronic fatigue syndrome under SSR 99-2P.  Please note, CFS is very nebulous, while pancreatitis is not.  Pancreatitis is easier to diagnose medically than CFS, because their are objective medical tests, which can demonstrate CP. Also, you would want to see what the Center for Disease Control says about CP. Or the National Institute of Health.  Their word carries a great deal of weight with SSA.

ReeAnn (ReeAnn)
Today I received a notice in the mail that I am schedule for an appointment with an SSA physician.  What advice can you give about this visit?  Should I take medical records?  Anything special I should know about?
Jim (SSDCavalry)
This is the consultative exam.  You can bring records, if you wish, but he may not look at them.  Let them know your pain, and the history and the progression of your CP. You should go. I have learned over the years of doing this work how to glean nuggets of gold from such exams.  Explain your good and bad days.  Or, you bad and not so bad days.  Please let him know of your frequent hospital visits -- hospital records and tests are often very helpful.

ReeAnn (ReeAnn)
I have every intention of going...  Need my case approved ASAP and not willing to do anything to slow it down
Jim (SSDCavalry)
Also, note how long he spends with you.  If it is less than ten minutes, write it down.  Make sure to note, whether he actually examines you or comes in, talks to you and walks out.  Also, if only a nurse examine you in the doctors stead, note it.  If the exam is of short duration and he does not seem to examine you, write it down, sign and date it, make copies, and put the original in a sealed envelope.  Keep it, because if you go to a hearing and the CE is unfavorable to you, you may need this letter to discredit the CE.  If the CE does not examine you and writes a favorable report, leave it be.

This doesn't relate to CP but to my Mom.  She was denied SSD, but now she gets retirement and is still fighting for SSD... Is it true that once you hit a certain age they will deny you every time?  She has been fighting for it for 4 years now...will they go that far back?
Jim (SSDCavalry)
She can do it (fight for her past disability) to increase her retirement benefit.  But, I believe SSR 99-3P deals with this.  People 65-72 are treated like people from 60-64.  Also, it is even easier to have a severe impairment for step two of the disability process. However, she may have a date last insured issue, depending on when she last worked and how many years before that in which, she worked.  They do not, once you reach any age, automatically deny you every time.

Poncho (Poncho9191)
I got SSDI in May and became 60 years old in June, at my age should I expect a review of my award ever?
Jim (SSDCavalry)
You will likely be reviewed at least once before you reach your retirement age of 65 and so many months.  You may not ever receive any notice, if (1) you grid out, that is satisfy one of their vocational rules, or (2) You have had no marked medical improvement.

Becky D. (Rekadaub)
While in the ICU, after being taken off life support, while still in a coma I fell out of bed and now have a perm. disability can I take any action?  This happened in April 2001.  I now have a perm. disability can I take any action?
Jim (SSDCavalry)
What type of disability or problem?
Becky D. (Rekadaub)
My right leg does not work, told I have neuropathy.
Jim (SSDCavalry)
Can you walk on it like before?
Becky D. (Rekadaub)
No, for 11 months I had a metal leg brace.
Jim (SSDCavalry)
If you received this injury at a hospital, you would need to talk to a lawyer in your area who specializes in
medical malpractice to determine whether you have a case under that state's tort law.

Thanks to everyone who attended and helped make this event a success. 

Lots of Gentle Hugs,

ReeAnn M. Betts
Wisconsin  Chapter Representative
National Membership Registration Chairperson
Pancreatitis Association, International


  Aug 22, 2002


casca1012 has joined room #Pancreatitis_Chat
 Pancreatitis Discussion
You have room administration powers
[pooh43078] hi casca!
[1denise] i have been searching for over a year now and finally got a chance to search for this chat room
[chefmary] Hello Mark
[gwest1955] Hi Mark
[ReeAnn] Tonight we are waiting for Jim - a SSGI lawyer
casca1012> How is everyone
[1denise] pm on eastern time??
[pooh43078] ok
[Denise] HI Mark
[ReeAnn] Hey Mark
[chefmary] Wonderful Here
casca1012> Stand by.....let me check on him
[1denise] Is he a regular
[Denise] here... back is giving me fits
[pooh43078] no
[1denise] hi mark
[ReeAnn] Jim just signed on to AOL
[1denise] do any of you take dilaudid
[Bruce] Hey dude
[Denise] I did at the ER
[gwest1955] Okay it usually takes a minute for him to get online
[chefmary] used it once with no help
[1denise] i have it to tkae as needed
[pooh43078] What's the matter Bruce, feel out numbered with all us ladies!  lol
[ReeAnn] If you have a question for Jim, pleas type in ?
[Bruce] odds are  bad
[pooh43078] We're harmless
[1denise] i applied for social secruity today
[pooh43078] All in the same boat!
[gwest1955] ReeAnn - are you going to monitor
[pooh43078] It's a looooong haul 1denise!
[1denise] said i should get it being that im in the hospital every month
[ReeAnn] And he will answer questions one at a time...
[ReeAnn] Yes I will do it..
[1denise] and what is jim
[ReeAnn] a SSDI lawyer
[pooh43078] An SSDI atty that specializes in panc patients!
[pooh43078] He's the best!
[ReeAnn] A special guest speaker tonight
[gwest1955] What ReeAnn is trying to explain is that Jim will answer one question at a time and we have to put in a ? if we want to ask
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[1denise] she said today with my condition being the way that it is she is going to put the applicatioin in right away
[pooh43078] HI JIM, ELICIA HERE!!
[gwest1955] She will then tell who is next
[ReeAnn] Hello Jim - How are you this eening?
[Denise] that keeps the confusion down
[Denise] Good evening Jim
[chefmary] hi Jim
[1denise] hi jim
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[pooh43078] No question, just a BIG HELLO from ELicia to Jim!!!
[1denise] how many kids does everyone have??
[Denise] 5
[pooh43078] I have one daughter 23 and four step children!
[1denise] i have 3 boys
[1denise] wow how old is the oldest denise
[Denise] I have 3 boys 2 girls
[Denise] 17
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[pooh43078] Hi BK
[1denise] my oldest is 13
[pooh43078] Mine is 23
[SSDCAVALRY] Hi Everyone!  I'm trying to learn how to use this new page.
[1denise] brb gotta fill up tub for son
[Denise] Ok Are we ready to get started??
[pooh43078] HEY JIM!!
[ReeAnn] It is much like the other
[BK] Hi brett here for Australia how's everyone today
[gwest1955] If you push the float button in the upper right hand corner the box is a better size
[SSDCAVALRY] I am sorry I am late - I was in LYnchburg, VA for a horrible hearing!
[pooh43078] Did you win?
[ReeAnn] That is okay Jim
[SSDCAVALRY] The Ve was a rattlesnale and turned on the Judge and me.  The Judge is stuck if he
casca1012> How does everyone like the new chat room?  if you click on controls up top you have a few options which may help chating
[Denise] how do I clear the page Mark?
[pooh43078] We all know you're busy Jim and appreicate you're taking the time to be here.
[SSDCAVALRY] denies, the Appeals COunicl will remand -- if he awards, it will be fine
[ReeAnn] Yes we do
[ReeAnn] Okayt does anyone have a questions for Jim?
casca1012> Good question......not sure...I will have to look into that one Denise
[gwest1955] ?
[ReeAnn] Go ahead Gail;
[pooh43078] ?
[chefmary] ?
[Denise] thanks Mark
[gwest1955] Is there any legislation in the process that would help expidite SSDI for pancreatitis
casca1012> I placed the last chat onto its own page, and will add this one also if someone remembers to copy the chat and send it to me
[1denise] i have a question
[SSDCAVALRY] I think Karen Williams would know this better, but I doubt they would make a special case for CP
[1denise] who is she
[Denise] please use the ? so we can take questions in order
[gwest1955] okay thank you
[SSDCAVALRY] THe HIV people tried to get their cases expedited in the early Clinton years, but it did not work.
[1denise] is having more than just chronic pancreatitis and say having bipolar to my advantage??
casca1012> is where the last chat can
casca1012> be found...sorry didn't mean to step on anyone..just wanted to get that info out
[SSDCAVALRY] No, you should mention both.  A combination of impairments helps your case.  The more the merrier, so to speak.
[1denise] good because i applied today and i listed both
[Denise] can I add to this Jim?
[SSDCAVALRY] If you do not knowof Karen Williams, I think Mark, Denise, or Reeann could explain who she is.  All I will say is that she is wonderful.  Done
[1denise] along with a leg injury
[ReeAnn] Okay Pooh Would you like to ask your question
[pooh43078] Are they even at the point of accepting CP as a total disability? PLUS, did you get all the copies of my medical records that you needed?  (Elicia here!)
[1denise] i dont know who she is
[Denise] I will give you the info you need after the chat ok Denise?
[1denise] ok great
[SSDCAVALRY] Ok Elicia -- I received everything and wrote a brief with supporting materials to the Judge in your case.  THey have not
[SSDCAVALRY] yet made CP its own listing.  Right now it is evaluated under the 5.08 or 12.09 listings. CP really doe sneed its own listing. CC
casca1012> What can we do to help it become its own listing?
[SSDCAVALRY] Some one can befound disabled by CP alone, but they willusually determine it as a pain case
[SSDCAVALRY] Done -- Mark, they takes lobbying with SSA
[SSDCAVALRY] I mean, that takes lobbying.
[ReeAnn] Okay Chef Mary  time for you questions
[chefmary] I am planning on having the pancreatectomy?islet cell surgery in October or November
[chefmary] My SS case is on appeal. Should I wait to have the surgery doen ?
[pooh43078] Thanks Jim, hope to see you for a hearing soon! Anyone that is in need of a GOOD SSDI atty, talk to JIM!!! I'm a big fan! Got to get back to bed, good night and thanks! Hugs from Ohio, Elicia
[1denise] night elicia
[SSDCAVALRY] By the way, Mark, I like this setup better Good night , Elicia
[1denise] i am from ky neighnors
[1denise] neighbors*
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[SSDCAVALRY] Ok Chef Mary -- do not wait -- do today what you may not bge able to afford tomorrow
[SSDCAVALRY] Furthermore,
[SSDCAVALRY] Judge's drool over objective evidence like surgery.  It should enhance your case.
[chefmary] Thanks Jim
[ReeAnn] Oaky 1Denise - do you have a question for Jim?
[1denise] how much money should i get if i only qualify for social security ?
casca1012> Thanks Jim
[1denise] and how long does it take?
[SSDCAVALRY] It depends on what type of Social Security -- is it Title II (SSDI) or Title XVI (SSI)
[1denise] she said i cant get disabilty
[1denise] i dont think i have worked long enough or enough
[SSDCAVALRY] SSDI depends on what you have paid into the system
[SSDCAVALRY] If you can't get social secuirty disability insurance (SSDI), then
[1denise] it would be just social secruity
[SSDCAVALRY] apply for SSI -- but this depends on your assets and income (Income has a $500.00 a month threshold)
[1denise] what do you mean
[SSDCAVALRY] SSI -- Supplemental social insurance
[1denise] i hired an attorney
[chefmary] Good Night All. thanks for the advice Jim
[1denise] by thershold
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[1denise] he isnt getting paid unless i get paid
casca1012> ?
[SSDCAVALRY] Ask your attorney -- that's what they get paid for
[1denise] i meant threshold?
[ReeAnn] Are you ready for Mark's question Jim?
[1denise] they said 542 was max
[SSDCAVALRY] Yes, $500 is the limit you can receive in income forSSI Title XVI eligibility.
[1denise] ok thanks!!!!!!
[ReeAnn] Okay mark - your Question
casca1012> Who do we talk to about starting or getting a lobbyist for us to make pancreatitis a listing
[gwest1955] Can I add to this question please
[SSDCAVALRY] NOSSCR -- National Organization of Social Secuirty Representatives and claimant's
[ReeAnn] As soon as Jim is ready Gail
[SSDCAVALRY] Mark -- I'll have to get you their info.
casca1012> that would be great...whenever you have time.......
[SSDCAVALRY] They lobby SSA over everything.  They are good people.
[ReeAnn] Okay Gail go aheas
[ReeAnn] ahead
[gwest1955] Can we as members of the PAI organize to ask for their help and if we
[gwest1955] contribute to them is it tax deductable
[1denise] whats PAI
[Denise] I will give you that information after chatr also Denise
[Denise] chat
[1denise] ok thanks
[SSDCAVALRY] Well, I am not a tax attorney, so please note that first
[Denise] no prob
[gwest1955] ?
[ReeAnn] ?
[SSDCAVALRY] You can organize, but you will, to receive donations, and learn the rules on lobbying, have to get registered with the IRS, just like the United way or Planned Parenthood
[SSDCAVALRY] All big assocaitons lobby and they ahve to adopt certain tax status to do so, in order to distingquish themselves froma true charity..
[SSDCAVALRY] Catholic Charities, for example -- no lobbying, but NOSSCR, yes, they lobby.
[ReeAnn] Okay Gail youhad another question
casca1012> ReeAnn> Okay Gail you had another question
[gwest1955] Is it better if we approach them as a group or as individual (I know about the paperwork for 501(c)3 - but will get through it somehow) & I have that paperwork for Karyn also
[gwest1955] them = NOSSCR
[SSDCAVALRY] Better as a group -- one person is only one person, but two or more is a crowd of voters.
[gwest1955] ?
[SSDCAVALRY] Ooops -- I was answereing thinking of SSA
[SSDCAVALRY] For NOSSCR, one of you can approch on behal fo the group.
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[ReeAnn] Okay I have a quesion along the same lines..
Please wait while admin console is coming up...
[ReeAnn] What kind of groups has the NOSSCR representated and how much success have they had?
new page target:1denise
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[SSDCAVALRY] NOSSCR has primarily represented lawyers and representative of SSI and SSDI claimants.
Room moderators are:
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[SSDCAVALRY] They lobby about listings also!
[SSDCAVALRY] They lobbied when they changed the old 1.05(C) vertobrogenci disorder
[SSDCAVALRY] Their input helped to creat a new claimant frindly 1.04 listing.  $
[SSDCAVALRY] So, they could conceivably help PAI in thieir quest to create a pancreatic listing. Done
[gwest1955] Is there a way (or should we use) web-pages to somehow organize to get names (petition?) NOSSCR for Pancreatitis Representation
[ReeAnn] Okay Gail - You have a question
[SSDCAVALRY] THE PAI leaders will have to determine what their strategy is in enlisitng NOSSCRS help.
[SSDCAVALRY] They will have to choose leaders and liasons.
[SSDCAVALRY] A petition won;t be necessary, so much as contacting NOSSCR.  Now remeber,
[SSDCAVALRY] NOSSCR has their own agenda.  They do work with other groups (M.S, for example), but
[SSDCAVALRY] you eant to use them to learn how to lobby on your own.  So that a PAi member can sit in front of a
[SSDCAVALRY] Congressional committee on SSA and testify why such a listing is needed, or push SSA to amend the lisitngs
[SSDCAVALRY] to include a rule making period that would allow for input on the creation of such a listing.
[SSDCAVALRY] SSA will ask the opinion of medical professionals, by the way, in creating such a listing.  Done
[gwest1955] ?
[ReeAnn] Go Ahead Gail
[gwest1955] To the best of your knowledge has any other organization/group initiated this process
[SSDCAVALRY] Yes, the HIV people helped to create the HIV listing in the early 1990s.  Down's syndrome (10.06) and
[SSDCAVALRY] Autism (12.06) are the result of lobbying in the past few years.
[SSDCAVALRY] Autism is 12.10 -- anxiety is 12.06
[SSDCAVALRY] Sorry, done
[ReeAnn] Does any one else have any questions for Jim?
[gwest1955] ?
[ReeAnn] Go ahead Gail
[ReeAnn] ?
[gwest1955] You know I am full of them - Do you have a list of contact persons within those organizations that would help us organize for Pancreatitis
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 Pancreatitis Discussion
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[ReeAnn] Okay Thanks Gail
[SSDCAVALRY] I got the stuff REEANN - but I have not looked at it yet.
[ReeAnn] Are there any other organization such as this one that would help our cause?
[SSDCAVALRY] Right now, I can't think of any -- let me look at some old back issue sof he NOSSCR newsletter.
[Denise] ?
[SSDCAVALRY] Folks, I am wiped out -- been up and down the state of VA today, and all over PA and NJ the last 2 days so this si the last queston
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[ReeAnn] Thanks Jim for all your help
[Denise] I was just wondering if we all couldn't lobby for this ourselves?
casca1012> no is much appreciated......I will post this info on the website also
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[SSDCAVALRY] PAI would be better -- bureacracys react wellto specail interest groups
[Denise] ok thank you Jim for all of yout ime and information
[ReeAnn] Thanks again for your time Jim
casca1012> Take it slow Jim and get some rest
[ReeAnn] You have given us some wonder information as always
[SSDCAVALRY] Good night everyone and hope you all have a good day tomorrow!
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[ReeAnn] You too!!
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[ReeAnn] Phew...........


Aug 7, 2002

Questions? I am currently representing 2 Chronic Pancreatitis claimants

How are the cases going?
Sitting at the OHAs. The workup in some northern OHAs is very slow.
I do all sorts of case -- This week it was Carpal Tunnel, and Parkinsons.

Gwest (Gail)
Okay - I will start by asking what section of disability that we should pursue to have Pancreatitis list under?
Right now they evaluate Chronic Pancreatitis under one of two listing. One of the 5.00's and 12.09 substance abuse disorder.  You do not 12.09.  I do not remember the 5.00 listing, but it is better to have a person 'grid out' or be found not able to sustain competitive employment under SSR 96-8P.  Actually, let me add.  12.09 is what they use to deny people disability -- because they will then say that your use of narcotic pain medication is a material and contributing cause to your disability, i.e., you are a legal drug addict and, because of this, most Judge's shy away from the listings for CP individuals.

Does the judges shying away from the listings for a CP patient help or hinder our cases?
It helps - because 12.09 has such bad connotations, and 5.08 is so difficult to prove -- unless the doctor is a specialist.  Furthermore it means that then you must prove that person can't work due to his severe impairment.  In one case, the CP person was awarded because her pain and medications prevented her from having the necessary persistence, pace and concentrations needed to work 8 hours a day, 5 days a week or an equivalent schedule.

Casca (Mark)
You may have already answered this question but...what can the patient do to prepare himself to fight the good fight?
Get all your medical records -- comply with your treating docs orders, and be aware of your limitations, for example:  Let's say you spend 1/2 and hour to and hour a day on the internet (like now) A judge could construe your use of a computer to mean that you could do a desk job, or that you are not credible when you speak of your limitations.  What you need to do is tell of your need for breaks, that you do not do this every day, or on a sustained basis, that there have been times you have been unable to keep up a simple 1/2 hour chat with a friend due to pain, etc.  But the best rule of thumb is what ole Slick Willie said, 'Don't ask, don't tell.' And I add -- don't lie, but tell them the 'rest of the store' -- if you walk a block one day -- how you need to rest after that block, how'll you'll be down after pushing yourself and so on.

I was told that the unrelenting diarrhea is a key factor in Chronic Pancreatitis cases. What are your thoughts on this Jim?
Everything is on a case by case basis -- it is how bad and debilitating the diarrhea is.  If it is anything like Chrons it is unpredictable, and an individual will frequently soils themselves.  If this is the case and they wear depends, carry extra underwear, stuff themselves with toilet paper, etc., it can win a case and I have done so several times.

Casca (Mark)
Should the patient gather all of the medical records before submission rather than wait for SS to gather it? Probably an obvious answer, but thought I would ask anyway
It does not hurt because I have often found that SSA will miss records and in my Chrons case last week, someone, twice, deliberately purged favorable records from my claimant's file.  Having your own allows you to protect yourself.

What happens if, during your treatment, one of the doctors you saw has retired and the office he was in has disbanded?
Usually the records are transferred or stored elsewhere. Sometimes, they are destroyed.

What happens if they have been destroyed?
Find out what has happened to them and get yourself a copy, if you can.  If destroyed, see if records were sent to other treating docs.

Casca (Mark)
Second part of my last question:  Or how about info on the subject of pancreatitis to submit with the file? Such as from a website or research that one has completed. Will that help or hinder? Is it a waste of time or is it beneficial?  An example might be...amylase and lipase levels not being elevated during an attack. We all know that doesn't always happen.  Research that has been done on the subject might help.
Don't overwhelm the judges.  Objective medical evidence is what they need.  While you have to educate the Judge, many will not accept such evidence.  It does not hurt to offer it but, don't be surprised if the Judge returns it.  If anything, give the Judge to the website for PAI.  Let him do research.  Many docs do not fully understand Chronic Pancreatitis, and so you want to help, but not bury the Judge with information.

Casca (Mark)
It seems to me though, for instance, my medical records stand about 18 inches high, you would be overwhelmed anyway, wouldn't he?
But as for your medical record, even if they are 18 inches high, dump them on the Judge, so long as they are not cumulative. 

Gwest (Gail)
Would a cover sheet with a synopsis and references be appropriate?
A one-two page summary of Chronic Pancreatitis is fine and you might want to include what are the objective proofs of Chronic Pancreatitis.

I would like to know if it is appropriate to submitted Chronic Pancreatitis information to a case worker if your case has not reached the trial stage
Sure, but don't overwhelm them either. 

Back to Casca's question. What do you mean by 'not cumulative.' I don't understand what you are trying to say.
Cumulative medical records are those that are irrelevant (no care about your runny nose or allergies in a Chronic Pancreatitis case).  The records must relate to the problem, or, another sever impairment.

If one were to approach their doctor or nurse practitioner about how this disease causes disability, what would be the most convincing description (descriptor) when approach them to write to SS in your behalf.
Pain - swelling - discomfort - use of narcotic meds - being laid up with the pain, an inability to complete tasks.  ALWAYS, FOCUS ON THE PAIN.  Don't forget, any problems that may be caused by the Chronic Pancreatitis, such as diarrhea, diabetes, fatigue, depression, etc.

Stress always makes my symptoms worse, how does SSA look upon stress in cases such as ours?
Stress -- they see it under 12.06 anxiety.  You need to demonstrate the causal relationship between your stress - personal financial problems from not working that aggravate your symptoms.  Let you doc know and if you see a shrink, pour your heart out about your pain and the frustration it causes you to be limited and how your problems aggravate your symptoms.

Lots of Gentle Hugs,

ReeAnn M. Betts
Wisconsin  Chapter Representative
National Membership Registration Chairperson
Pancreatitis Association, International


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