This scared me also.? SSDI has awarded for MS has to go throug a review at 3 years, 3 years and every 7 years there after. The gov has to periodically make sure its sending the awads to a living person.

>>Will they take SS away from me.?Th answer your question no.

I've been thru it once and expect my next one in october. Its just a 1 page form to fill out. I can and have typed the questions out in a PM to someone who was alsop concerned wit this. I think its 11 questions about since last review all check box answers.. -Asking if you have gone to school or aquired traing , . -Asking if you have worked for someone and if so the dates -Asking if you have discussed work with your doc discussed work with you(checkbox- no or -doc says I cannot work or -doc says I can work)
-Is your health condition since the last review(-better or -same or worse)
-then a place to write in last three doc appointments and boxes for 16 characters to describe the reason for the appointment
-Have yiou been hospitalized otr had surgery since last review.

Then 5 lines to write in any additional information yo want included.

I really sweated that question on better wors or same because like you said, when you can rest MS is better?
It was and truthfully, since the last review it is different. But that was not one of the checkboxes I could select???
I sweated that one. I went to the NMSS website were they have that laywer who answers ssdi question. and he replie---this is the government they are not able to handle fine details like that. Do you still have MS? Then its the same.

So that took care of that one for me. Then I had gone to school completed a degree since I was awarded, this was my first review. So I used the lines to describe that. I went for 1 semester but it got to hard as I kept falling on my nose. So the proffs let me compete the degree over the internet-even though they did not have courses on the internet. The prof just emailed to me the lecture notes and tea=st. I emailed back the test. So I used the lines to describe that. I did get a degree since I was awarded but I didn't physically attend the university but I had started to do it but was not able to complete it.

Do had told me not to go back to school before I was awarded, but I went anyway. He never told me not to he just told me he was suprised I was able to.

3 years after you were awarded you will get a letter with the form that says"SS must regularily review the cases of peopl;e getting disability to make sure they are still disabled." With instructions how to fill out the form and that must be completed and mailed back within 30 days...

Then about a month after sending it in you will recieve another letter from SS that says something like " at this time we do not need to review your case"

Thats it for another 3 years. As always save everything you get from SS and make a copy of what you send to them.

It was pretty anti clamatic after all the worry I had invested into it.

Thank you for this information,. I had an interview at 2:30 for a partime job, 15,hrs. i just cancelled it. i dont want to rock the boat with ss. and the way the economy is now, who knows they may start taking ss away from people who are not as bad as others.

I'm kind of the same as you about that carolinaq. I suppose if I had put down that I worked a review would have happened? I can live on my SSDI-so I'm kind of leary of rocking the boat +_ with the economy as it is, not many chances to work. Better to volunteer.

I did read of the experience of one womam who got SSDI and also was awarded ltd from her work. She sid the ltd was very small and the insurance company keppt making her have her doc fill out that she was still disabled. The insurance company just made it too much of a nuisance to keep her ltd & it was a small amount so she let it go by not getting her dioc tho fill out a form AGAIN stating she was disabled.

so the ltd was gone & she really wasn't upset about that.
Then SSDI sent her a letter thatr her case needed to go throug a full blown review, just like when being awarded because by the ltd insurance she was no longer disabled.

She went throug a ssd review h=just like the originakl on one and was awarded again.

But I hate to say I am somewhat like you about working. Not sure I want to rock the boat.

Its posible to work though as SSI disability the needs base disability has the program Welfare to Work and I believe that disabled people on SSI have to work to keep their benefits.
Good will hires many of them & I know a person with MS who is working at Goodwill for that reason.

There is that Trial work program in the first yeas of SSDI.
MsInterupted posted positive her experience with a trial program counselor?.

thank you for asking this question. i was worried in the back of my mind about this but now I feel better about it.

thanks to both of you.

The answer is no. Here it is "straight from the horse's mouth":

Question
If I go back to work, will I automatically lose my disability benefits?

Answer

No, the Social Security Administration has several work incentives that may help you to return to work without losing your benefits.

For more information about Social Security's work incentives you should: - call our toll-free number at 1-800-772-1213; - contact your local Social Security office

I've had two reviews. Both were done by phone. Essentially you are answering questions that are typed onto a form that is sent to you. You just sign it and mail it in.

Hi, if you have MS, you have MS they won't deny your disability. I would see your GP and get a letter from him stating this is a terminal condition and does not get better. They should know this. Don't worry about it. After this review, they will not bother you at all. They put you on permanent disability. Don't worry. Hugs, Maggie

i have never had a review but ms doesnt get better well 4 good- there is no way they could deny you- they are just making sure i guess
as if we wasnt put through enough!! hugs!! tickey

I've been on SSDI since 2001. I was review just this past fall with the little front and back page with questions. For me, I'm not better, but MS is also an always changing degree of wellness. They asked what doctors I had seen, so I used my neuro and my optho eye dr. I'm with everyone here--they just don't want to be awarding where it is not warrented...

FAITH not FEAR... xo Cj

I too was concerned about this. I completed the forms (there were at least 5 for me to fill out) and mailed them back. I never received a letter saying how the review went though. Is that normal? It has been many months. I would hate to call them and ask (rocking the boat?). I do work part time, very minimal hours, from home. I am able to adapt my working to days where I feel ok, or hours when I feel ok. I can work at midnight when I am having insomnia. I am very lucky to have a flexible boss. But, I put this on my paperwork too.

I was one of the unlucky ones to have gotten fired from my job when my employer found out I had MS. I was going through a flare and was needing to take time off to recover but had not taken any time off other than for the Solumedrol infusions and doctor appointments. I did claim discrimination, but due to the stress of the court and all the paperwork involved, it was making my MS worse and I had to stop the action.

Anyway...I guess my point is, you can work and still collect as long as you stay within the guildines of not making too much. I agree though with the fact that when you discontinue working full time, your MS is not as aggravated due to less stress and being able to rest more. But it seems like a waste of time to make people with a diagnosis of something like MS have to go through hoops when there really is no cure for MS. It doesn't go away. It is not like a back injury that could possibly be fixed with surgery. It seems like a waste of time and money.

Social Security even denied my husband initially when he was dying from terminal cancer. Um hello....you give people with less of a diagnosis disability, but when someone is dying from cancer and everything has been tried to cure it but it continues to spread, why make the poor patient feel worse?

Sorry for the ramble.

Could someone tell me though when I should hear, or if they will send a letter about my review? Should I just call them and see, or is that rocking the boat?

5 pages Reply #10, that does not sound like a "Continuing Disabilty Review"

That sounds more like the original application. How long have you waited since you sent it in?

In the original application, first I recieved a letter I would get a phone interview and I should expect the call at this date and time.

After the phone interview I recieved a letter that I was scheduled for a physical exam with a SS doc.

After that I received my award letter. I think 4-5 months from when I mailed the application to when I received the final award letter on the initial application. The continuing disability was 1 page both sides and I recieved a reply about a month after I mailed it. But that was in WI-each state has its own backlog & from what I understand the backlog has increased during the recession.

If its the original application, sure call SS and ask whats happening with it. I have read posts of many doing that and no one being penalized for calling.

This was my review. I was surprised at how long the review paperwork was, but I chalked it up to the fact that I was working. They basically made me do the same as the initial. It may be because my initial was in a different state? It has been at least 3 months since, but I figured since they asked for information of when I saw my doctor last and stuff they had to wait for my records? What was even worse was I had 2 people working it and kept getting one letter saying I never returned it. I got a supervisor and was told that was a mistake and to ingore. It hapened 3 times before I got it straightened out. I wonder if my case was dropped now.....?

hmm, reply #12,

was it SSI diability or the need based disabilty which is share by both the state and the federal gov or was it SSDI?

I'm just asking because I am wondering if the move to a new state kicks off the mor comprehensive revieew when the normal CDR (continuing disability review is done) ?

Or maybe it was just a random spot check for this more comprehensive review and you just happened to be the lucky one chosen...like the IRS randomly chooses a certain % of tax filing to be audited & every year someone has got to be the luck tax filer that is chosen?

From Reply #6, it's not because of working that this more comprehensive review is done?

I don't mean to be rude, I'm just trying to think of a reason your going through a more comprehensive review. How long have you been collectinf SSDI or SSID?
How many reviews have you gone through previously or was this the first one?

This was a normal disability review. I do not get SSDI, just plain old Social Security disability. I was awarded disability just prior to my move to another state which was 3 years ago. I just figured it was because I did work a few hours. I don't come even close to making the maximum wage, but because I do work occasionally?? It is all just silly if you ask me because even if they took my disability away, which would majorly suck because there is no way for me to work full time out of the home, I would collect under my husband who passed away. I am young, but MS affects me enough where I could not work full time. If they reduced me down to his Social Security, I would then qualify for Medicaid...which means more out of pocket for the government. I make just over the limit now with disability.

So, in short, this is my first review. I only applied once for disability and never had any issues with qualifying on my first and only application.

I'd be nice to hear from someone else who works to see if their review was more extensive.

Yes it would be nice to hear from someone elsd, Reply #6 did and he just said it was a phone interview because he worked and not just a mailed in form.

If your on the need base disability, SSI, the financial limits a person can have to qualify is a program by the state and the fed combined. Both the feds have to approve you disability and the state has to also.

If you moved to a different state that would have kicked of another initial review in that state. Perhaps that why it was so long-you have to qualify for that new state for disability?

Also the federal rules about Medicaid coverage have change since they passed health care reform in March. Now the financial limits making someone eligible for medicaid have been raised-so perhaps your are not near the eligibility but now within the financial eligibility requirements? Now a dual eligible, qualifying for both Medicare and Medicaid. Which means you will get additional help with your drug costs.
New federal Guidelines on Medicaide...
http://www.cms.gov/smdl/downloads/smd10005.pdf

When I applied for SSDI, first I received a denial letter from SSI because my savings and assets were too high to qualify for SSI. I would have to spend down to qualify for that one.

Thats the need based disability, with financial limits to qualify, and that limit has been raised by the new health reform law. Perhaps that is what is taking so long?

Then after the denial letter for SSI, I got my first contact with the SSDI. Thats the one from past work credits. Maybe the move to a new state kicked off another qualification review in that state because SSI is a fed & state program combined. Then the financial limits of eligibility was raised in march by the feds in that health reform law.

If you were close to the limit you may have become in the limit & are now a dual eligible person, qualifying for both Medicare & Medicaid. Which means you would get additional; help with your drug costs & your Part D premims???

I'm not entirely sure I read your response correctly?
Your on SSI but on Medicare?
Generally..
SSI + Medicaid together
SSDI +Medicare + SS Supplemental Insurance a person gets on their own to go with Medicare + Part D Insurance.

I'm not sure what you are saying but could the new health reform law be delaying your response from SSI and the move to a new state with nee disability financial limits????

Did they give you a phone # to call on the form that you filled out.