Applied for SSDI the first week in June, online. Was followed up by a phone interview w/ them on June 13. Two of my doctors have written helpful letters to SSDI.

Since then, I had an appointment with an MS specialist in Kansas City. She thinks that I likely do not have MS; that it might be CNS Lupus, which is also a dx that Mayo Clinic considered back in 2002.

I have a follow-up appointment with her next week, during which time she will compare old test results with recent tests, and try to come up with a dx.

I worry that a possible change in dx may delay or jeopardize my claim.

If I've posted this on another thread, I apologize for the repeat.

~ Faith

Faith,
You are taking a chance doing volunteer work. This can equal the real thing in SSA eyes. You are keeping to a schedule, and are doing certain duties. You are saying I can not work a regular job, where I stand, stoop, lift, bend etc, but can do these things as a volunteer. You are risking a denial.
I suggest you find the 3373, and 3380 forms, and see what questions they ask about your daily activities.

Thanks for the advice. I looked online, at SSA's Forms Home Page, and couldn't find the forms that you mention. Are they the Work Activity Forms? We've filled those out, but I don't think those are the right ones, because I coouldn't find those form numbers on the copies that I kept.

Yeah, I wondered about volunteering being a problem, but some advice that I'd received said that it wouldn't be. My volunteer jobs do not involve standing, lifting, bending or stooping.

When I volunteered for VBS at church, it was about 3 hours a day, for a total of 15 hours. That was only for one week. Classroom time involved mostly sitting, and there was some minimal walking from one classroom site to another. I don't think I'll ever have to report that time, since it was short-term.

Right now, I'm only volunteering about 3 hours a week, and that's spread out between 3 separate days. It, also, does not involve standing, bending, stooping or lifting. I read to nursing home residents and play the piano. So, I am not claiming that I am unable to do those activities, and then going out and doing them as a volunteer. I don't see any inconsistencies there.

I do plan to add about 10 hours a week in the fall, but I still have time for my one or two naps per day, and I don't there's a very good case that that is comparable to substantial, gainful employment, if I don't ever volunteer for more than a 2 or 3 hour block at a time.

But, I'd welcome additional comments.

~ Faith

The SSA 3373 BK, and SSA 3380 BK forms are sent by the state agency not your local office, so they are not found at the SSA site.

You should use the form with the latest date.
http://www.legisit.com/downloads.asp
http://www.disabilitydoc.com/disabil...ication-forms/

I do not think you understand SSA definition of disability. You medical symptoms have to be severe and meet or equal a listing from the impairment. You have to be sick enough not to do sedentary work (eg) playing a piano is a sit down activity.
http://www.ssa.gov/disability/profes...ltListings.htm

You only "volunteer" job should be making sure SSA gets your medical records.

My husband and I have both filled out similar forms, from Disablity Determination Services in Kansas.

I understand that doing sedentary work for a period of time that, if paid, could be determined to be substantial, gainful employment could be a potential problem.

However, I am currently doing sedentary work for 3 hours a week. That still doesn't strike me as something that should jeopardize my claim, as it does not even come close to being substantial, gainful employment.

If you believe that I do not explain the SSDI definition of disability, please explain it to me in a way that I will understand. My medical symptoms are severe and they do meet an SSDI listing. I have doctors who will back this up. It appears that you might be making assumptions that this is not true, without having any information.

I'd be interested in seeing where you get your information, that it could jeopardize a claim. Do you have a link for that? And possibly, personal experience or anecdotes as well?

I've decided not to pursue paid employment during my application process, even though the disability firm that we contacted said it would be OK, as long as I don't get too closde to the $960 per month. I also don't know if anyone would even hire me for 2-3 hours per day, especially if they knew how my flares affect my work attendance record.

But, again, I can't see that volunteer work, for limited blocks of time, would be too much of a risk. If I were volunteering 6-8 hours per day, that would be different.

Anybody else have comments or experience related to volunteering while applying for SSDI?

~ Faith

I'd be interested in seeing where you get your information, that it could jeopardize a claim. Do you have a link for that? And possibly, personal experience or anecdotes as well?

I know a person, who worked a part-time job, and is fighting to keep her benefits. The agency feels, her medical health problems are better since she worked. The meds and therapy must have done the trick.
When you volunteer you have to keep to a schedule. You should ask you psychartist and therapist about volunteer work.

This is information about mental disorders direct from the agency.
https://secure.ssa.gov/apps10/poms.n...2!opendocument

When you have a physical problem the symptoms have to be severe enough to keep a person from doing sedendary work, or any job in the national economy.
http://www.andalman-flynn-law.com/li...UIDELINES2.pdf

Thanks for the links.

I used to hold a 6 1/2 hour a day job. I am not sure that I could maintain that kind of schedule anymore, due to my MS fatigue. I take 1-2 naps per day. I read your links, and I also do not believe that I could be seated for 6 hours, and on my feet for two hours. I am not sure how the information in your links contributes to your belief that volunteering a few hours each week will jeopardize my claim.

My neurologist wrote to Disability Determination Services that I am "totally and permanently disabled and there is no possibility of rehabilitation. She has such frequent flare-ups that she is unemployable. Even when she has periods of remission, she is unable to work an eight-hour day and these are infrequent."

My psychologist wrote a 2 page letter, using information that I supplied to her in a letter that described how my MS has affected my employment over the past 6 years. In her letter, she stated that my condition is not likely to improve, and that I am not likely to be able to return to gainful, substantial employment.

I have asked my psychiatrist and psychologist about volunteering. My psychiatrist would not have supported my going on disability if I stayed at home and did NOT volunteer. He would be concerned about mental health and depression issues if I did not get out of the house to do something useful and meaningful. (However, he has recently left the agency, and I no longer have a psychiatrist.)

If requested, my psychologist would indicate that she prescribed volunteer work for me.

Again, you do not seem to be acknowledging that the volunteer work that I am talking about does not include enough hours that it would be considered the equivalent of gainful, substantial employment, even though I have stated that multiple times.

I don't know how many hours your friend was employed, but it appears to me that her situation might be different than mine.

~ Faith

I am not sure how the information in your links contributes to your belief that volunteering a few hours each week will jeopardize my claim.

How can you volunteer on a regular basis, with a depression? Do you really know when you will feel well enough to be on a schedule?
If you can be on a schedule you condition has improved and you are no longer disabled.

I am talking here about a mental health flareup or decompensation.

When your psychiatrist/ psychologist describes your mental health problem; they have to use SSA terms.
https://secure.ssa.gov/apps10/poms.n...2!opendocument

I want to wish you good luck with your case.

I have multiple sclerosis (or possibly CNS Lupus). I am not in a depression. Are you confusing me wih someone else?

I have not read anything in your links that says "if you can be on a schedule, you are no longer disabled." So far, that quote only comes from you. Yes, playing piano is a sit down activity. So is watching TV and eating lunch. Can I not do those either, without jeopardizing my claim?

I am currently volunteering only 3 hours a week! You have not acknowledged that I am volunteering very little, even though I have stated it repeatedly.

I am unable to work an 8 hour day, or probably anything longer than about 3 hours at a time, without a nap.

~ Faith

Faith,
I did a Google search on whether a person could do volunteer work, while applying for SSI/SSDI benefits.
I did not find any information. Most people are too Sick.
I am sure I read about this on a message board at http://groups.yahoo.com/group/Disinissues/
http://brain.hastypastry.net/forums/index.php
Social security section.