SS Disability Question

    • Anonymous
      December 7, 2006 at 3:39 pm

      I received a letter saying I was medically eligible for benefits (first time application !!!) I was wondering how long it took some of you to finally get the approval letter after that first one?

      Thanks for any help you can provide.

    • December 7, 2006 at 4:49 pm

      Yea first time only about 6 months and they back dated benefits. Be ready to accept the final conclusion to your specific case. That it is permanent and total and they will accept you Dr’s diag
      Bill W

    • Anonymous
      December 8, 2006 at 2:47 am

      I’m having a little trouble understanding your reply. I have just been deemed medically eligible and I know I meet the non-medical requirements, I am just waiting for the second letter with the final approval and amounts etc. I was just trying to get an idea of how long it took others to receive the 2nd letter.

      I didn’t go as far as some people have in the forums with writing letters etc but all my different doctors, meds and ER visits seemed to do it for me. I only listed CIDP but my letter from SSD listed CIDP, hypertension and liver damage.

      Also Im wondering for those with kids- how did they handle the back pay for your children’s benefits? I know the 150% total family benefit thing just wondered how the application and that whole process worked.

      6mos is fast Bill. I applied in 10-05 online and they’re just getting to me now.

    • Anonymous
      December 8, 2006 at 11:19 am

      If you have been approved for SS benefits, I would expect a second letter very shortly. If you applied at least 6 months ago, then your benefits should be starting right away, I would guess by next month. I don’t know about any children’s benefits, as my husband was still working when I got disabled, so my children didn’t receive anything (actually two of them were done with college already, & the third was a junior in college already.) Good luck…

    • Anonymous
      December 8, 2006 at 3:21 pm

      Shortly is right Pam! My wife told me someone called earlier from a govt #. No message so I called the person assigned to my case and YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!!!!!!! She was calling to check if my account info was still right – Im approved and next week Ill have my 18months back pay. In July I can get Medicare too so no more $2000 deductibles!!!!!!!!!!!!! This is the first time in a long time where I appreciate the government.

      Ive been stressing being broke and out of work so long Im not really registering the excitement my wife did. Maybe its the prozac.

    • Anonymous
      December 8, 2006 at 5:19 pm

      CONGRATS! I am so happy to hear that not only are you approved, but you will be getting your back-pay checks. It is hard enough being ill, let alone worrying about money. My husband just retired yesterday, so I will finally be going on Medicare on Feb. 1st. I won’t miss the $1000 yearly decuctible we had, but now the govt. will be taking $93.50 each month out of my measily SSD checks. All in all I think it will be a wash, as I still need to keep his insurance as a supplement… Best of luck & have a great Christmas!

    • Anonymous
      December 8, 2006 at 6:45 pm

      Congrats on your hubbies retirement!
      Yeah this may be a good christmas after all ๐Ÿ˜€ I guess the long wait helped me learn to be a total cheap skate though so it served a purpose. My son’s 1st birthday is Wednesday so he is going to have pretty good December. I’m still just realizing that I can relax and smile a lil bit. I have had to put off doing so much from buying prescriptions, doc visits and more and now I wont have to.
      With my deductibles being so much I’ve just not paid a whole lot of medical bills. $3.5? 3 bucks a month? wow. We pay like $300 or more a month through my wife’s company but its worth it with no prexisting conditions.
      Do you pay copays with medicare?

      Now all I have to do is drop about 100lbs ๐Ÿ˜€

      Feliz Navidad to you too. I guess this means I can afford a tree.

    • Anonymous
      December 8, 2006 at 6:46 pm


      That is a load of your mind! Well done.:)

    • Anonymous
      December 8, 2006 at 11:18 pm

      Sorry about the typing error, I meant that it will now cost me $93.50 a month for Medicare. I don’t believe that there are any co-pays or deductibles, but they might now be as generous as my husband’s insurance has been…

    • Anonymous
      December 9, 2006 at 12:02 am

      Thanks Ali. I only found out I might be eligible from this site back in ’05 about 8 months after being diagnosed. Then I applied online and that got all screwed up. So in May a retired gentleman who works for SS part time called me up to find out what happened to my application since it was incomplete. He sent me an envelope for my birth cert and took down all the hospital visits/Doctors I had, my meds, dosage etc and sent it to the state side. The woman there sent me a packet with forms to fill out etc. None of my neuros would complete the questionnaire but I had records from them all. I filled out their questionaire by hand and it was a mess since my hands are kindof jacked up with cramping, wasting etc. She told me that their doc would check out the records and they might call me in for an exam. That was the end of July. They waited a few more weeks to see if anyone would fill out the questionnaires then in November I got the first “you are medically eligible” letter.
      I was kind of antsy since then, I called SS yesterday and they told me to wait 60 days and I read through the SS newsgroup and didn’t see any timeline, so I came back here to ask and had I checked my caller ID before posting I would have known.

      Sorry to bore you with that (Maybe that info will help someone else trying to get SSD.) BTW I really like your avatar. My nephew used to make me stuff like that and I’d put it up at work.

      Pam- lol $93.50 aint bad either considering what I was robbed out of before. I want to figure out a way to use both insurances so I dont pay any copay or prescription costs. I’ve been waiting for medicare so my wife can leave her present company and go in to business with her father. That would leave my wife and son uninsured but since theyre healthy one of the small kaiser programs wouldnt be bad. We also have thought about her using the family medical leave act to keep the insurance a year while finishing her degree and getting started with her father.

      Hey its 15 degrees here tonight in the Atlanta area – do I got you beat up in the frozen tundra?

    • Anonymous
      December 9, 2006 at 12:21 am

      Thank goodness for that retired gentleman who called you up ๐Ÿ™‚ I think your writing being bad helped, maybe you remember someone who posted last year, I think, said that the writing sometimes confirms how bad things can be.

      I’m due to fly into Atlanta on Jan 5th, probably wont be any warmer by then in the Tundra …… will it?;)

    • Anonymous
      December 12, 2006 at 3:15 am

      I remember a male from NC who got approved after a long while, I think he was a golf pro or something before CIDP. I never saw a writing reference though. I complained about how I had to stop my meds and write through pain to fill out that questionaire though. Every one was real nice and helpful which was kind of a shock since I heard so many horror stories. My wife knew I’d get approved though first time and she always had faith. I wasn’t nearly as sure. I still kind of held back until just an hour ago when I finally saw it manifest.

      I meant NE MN as the frozen tundra ๐Ÿ™‚ its a balmy 50+ degrees here now. Who knows what it will be by Jan 5th. Maybe 70 maybe 30 and the humidity must be -34, I feel like a piece of old bark

      let me formally say yeeeeeeeeeeeeeeeeeeeeeeeeeeeeaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
      My direct deposit went through! This literally will change my family’s life.For the first time in a long while(along with the Nov election) I have some faith in this country and how it works.
      My appt for adding my son is next week. They wouldnt let me do a phone interview or give it on a day my wife doesnt work so I have to drive in.
      I will keep posting on how everything else proceeds so anyone searching can get a timeline.

      merry xmas – season’s greetings

    • Anonymous
      December 12, 2006 at 10:16 am

      Glad to hear that you have gotten approved and funds in before Christmas. I applied via phone on June 27, 2006 and just last week had an appointment with their psychiatrist. He told me that he would let ssd know how miserable my situation is. If I don’t take the drugs I will be back to the walker and possibly wheel chair. But the steroids I take make me nuts and brought on diabetes. And of course, the depression sets in. So, I am waiting to hear. I, very fortunately, had some funds to fall back on through this year. Without those funds, I don’t know how we would have survived. My husband (he is an amazing man) works out of the home and mostly takes care of me and the house and the children, so his income is pretty minimal. Getting SSD will solve a lot of problems I hope. I have some insurance that is Cobra that runs out as of July 2007. Do you automatically get medical assistance if you receive benefits? Does anyone know about that? Hi to Pam. Here we are in the “Tundra” and no snow in the metro area. It’s actually 39ยฐ outside.


    • Anonymous
      December 12, 2006 at 2:33 pm

      Hi Jan- If you are approved for SSD you will be eligible for Medicare (same as retirees, not to be confused with medicaid, that distinction evaded me for a while) after 2 years of SSD benefit eligibility.
      So for example- you applied June 27,2006 – if you prove that you were eligible before that date they will go back up to a year before your application date and retroactively apply your benefits. So let’s say you were disabled 5 yrs ago and they say you’ve been eligible all that time- your date would be June 27, 2005. They’d pay you “back pay” from then until now and on June 27 2007 you’d be eligible for medicare. Your children are also eligible for benefits if they’re under 18. They will pay up to 150% of your benefit for your entire family(you+all kids). The insurance will only apply to you though. And I am not sure if the SS poverty based program has any family healthcare aspect to it. Depending on your state’s programs you might be entitled to some state based medical insurance/assistance programs.

      Im not an expert or a professional so some details in the above might be slightly off but Im 99% sure that is all accurate.
      I hope you get approved soon.

      Your situation sounds alot like mine. I stopped working in 03 and my wife took a temp job and it turned permanent and then she got an opportunity to work from home and now we will find out if she will begin to transition to a promotion while still working from home. She hasnt made much and my inlaws have helped us out a lot over the past few years. Its been hard and I felt close to a breakdown this past month. I got off the steroids because of the mood swings and ulcer problems I have too. My wife and I have had problems but I this whole ordeal has made me remember why I married her, her character.

    • Anonymous
      December 20, 2006 at 8:31 pm

      Hey Grawplyr,
      I found out on Dec 13, 2006 that I have been approved for disability. WOW. What a relief. I have been sweating this for some time. I would have applied earlier, but I was receiving some unemployment, so I had to wait until the end of June. I have already received the check for backpay for myself and a deposit of backpay for each child (2). This is a true blessing. I am happy to say that I received approval on the first attempt. I had heard discouraging reports from other people, not necessarily on this forum, that I was sure I was going to be denied. I am truly grateful that I have been approved. Now I, also, must lose 100 pounds. Sigh.
      Merry Christmas!
      Jan B

    • Anonymous
      December 20, 2006 at 10:49 pm


      I’m really happy for you and your family. It makes a big difference at this time of the year too. How did your deposit backpay for your children work? Did they give you 50% of your benefit as your children’s benefit? I have to go in tomorrow morning to let them copy the birth certificate.
      I never really understood what this means to some of us on the board until recently. I combed the internet for tips on SSD and they made me pessimistic too. Great going Jan, enjoy your holidays (if you partake).

    • Anonymous
      December 25, 2006 at 1:53 am

      Merry Christmas to you too Grawplyr. We certainly do partake in Christmas and try to live according to the will of God. Though sometimes our “inner translator” of God’s will for us can get the story wrong.

      As far as the money goes for my 2 sons, they paid me backpay for 5 months for each of them. That was two individual deposits. Then they sent me a check for 5 months of backpay for me. Then starting in January I will receive my payment for December and two payments for the boys. To my understanding they are not taking funds from my disability ammount to get the boys’ payments.
      I actually feel pretty good about the money I will be receiving because I also get child support and with this income we should be able to carry on with little pain. My husband spends most of his time taking care of me and then coaching basketball. He also volunteers to coach for our son’s 4th grade basketball team. So this income will allow him to focus on me and the basketball teams.
      I actually received money before I received any letters from SSD explaining their decisions and what to expect. When I run out of the money I had from before, I had to cut short an annuity and an IRA, I expect to apply for medical assistance for myself.
      I am really hoping to get into remission so I can get the gastric bypass surgery. I have gotten so Huge, part of me thinks that the disease seems worse just due to the extra weight. I was not small when all this started. But now the extra weight really drags me down and it is hard to discern if this symptom is due to the CIDP, or to the extra weight. Exercise is not working so well for me. Anyway, I guess I will have time to figure it out.
      Happy Christmas,
      Jan B

    • Anonymous
      December 26, 2006 at 1:29 am

      ๐Ÿ™‚ Although I mostly only read posts now, I thought I might give a little info about my own IVIG (SSD/Medicare) experiences. I have been receiving IVIG since 2000. At the beginning I went to an infusion center and the cost (which is absolutely horredous) was paid by Medicare/Medicaid. During a relapse in 2002 I was put on homecare. I am single, lost my job due to this illness and luckily (with some great help from social workers) received SSD relatively quickly. Sailed along getting IVIG but when switched to homecare was totally paid by Meidcaid. Don’t be afraid to look into Medicaid help in your own state. IVIG is VERY expensive and although you may not qualify for total cost coverage you may very well be eligible under a very reasonable “share the cost program.” (In my own case the cost of IVIG is so high I was eligible for full cost coverage). Everything was going along well and the MEDICARE PART D came along last December. Infusion pharmacy in Dec. told me I would have to go back to a hospital infusion setting because they could not supply IVIG and even break even.
      That’s when my homework began. As a Medicare beneficiary (under retirement age) I either had to pick a Part D Plan or go with whomever I was assigned to. I researched on the SSS website which last year had a way to pick a plan based on the medications you needed. (Hope it is still there.) It came up with 2 insuers who covered all of my meds, including IVIG. Although I missed 2 months of treatments to get everything in line, I have to say that my home infusions are going along BETTER than before.
      I guess my point is that you have to research and be your champion, don’t settle for whatever you are told. Even though there has REALLY been an IVIG shortage this past year, I thank God, that I was lucky or informed enough to pick a good Medicare Part D provider who has contracted with a terrific home care/infusion pharmacy that I haven’t felt the shortage even though I receive 5 infusion days every 4 weeks. It was a great deal of very tiring work and phone calls but so far so good. (Knock on wood) ๐Ÿ˜‰
      E-mail me and I’ll give you the gory details of my fight.

    • Anonymous
      January 3, 2007 at 10:37 pm

      I too am going on medicare, and become medically terminated from my job in a couple of days. I take rituxan, so I have to go through the whole off label use appeal thing again. There are no big deductibles with medicare, like 124 dollars, BUT every two months i get the rituxan I am responsible for ten percent of the total bill, so that means around 400 dollars a month avg. for my treatment.

      I make too much for the free medicaid, but not enough to where that bill wont hurt. I know ivig is very expensive as well, and the ten percent applies to that as well. If anyone knows a way around this please fill me in.

    • Anonymous
      January 7, 2007 at 8:07 pm

      Does anyone have copies of their letters their drs wrote to ssd? Or what all type of information needs to be in there? I thought I would type up the letters with the appropriate information myself and submit it to the drs to edit, etc and sign so that would help them out some and hopefully speed up my process of getting the letters to ssd as well.

    • Anonymous
      January 30, 2007 at 2:24 am

      ziggysmom- my neuros at Emory would NOT fill out any paperwork for SS. They took their time forwarding the records too.
      My PCP who is an internist filled out whatever was requested. The packet of paperwork I received had the same evaluation questionnaire they sent all my doctors. They wanted me to forward a copy as well to my docs. To find out what is necessary you have to look at the SS website. They look for “SEVERE” – the word severe and there is a list of ailments that apply and conditions along with those ailments that can be teamed together in the case of CIDP since CIDP isnt listed by itself. Then when they get your records a doctor evaluates what you used to do for work and what you are now able to do and whether or not you are going to get better in the near future.
      From what I hear the main reason most people are denied is because of incomplete medical records and or broken deadlines for forwarding the info. So far everyone at SS has been totally professional and kind. It has taken a long time and now my child’s benefit is being held up but thats beauracracy at work. Even the state investigators who do the medical eligibility stuff were very nice.

      Doctor letters are great but not even necessary if your condition is documented properly.

      If your documentation isnt right but you personally met all deadlines you will have a exam by your state’s evaluation doctor.

      hope that helps

    • Anonymous
      February 5, 2007 at 4:43 pm

      Here’s an update. I applied to add on my son who lives with me right after I was approved in December. 30 days came and went and nothing, then I saw the local SS office on my caller ID. Turns out that they need to try to find my other son. His mother refused visitation and is very hostile towards me in general so I haven’t seen him since 1997 and although I have tried I dont even know where they live.
      They ask you about any and all children you have when you sign up so I told them about my first son who I don’t have contact with. Since my other son is entitled to 50% of my children’s benefits they are using some system they have in place to try to locate him and his mother. Then he will receive half the backpay and half of the benefit until he is 18. If by the time he turns 18 he does not come forward to claim his benefit, a check will be issued in the amount of his 50% that wasn’t claimed to the payee for my son who lives with me and my wife.
      They said this extra process would take additional 30 days. They also said if they find him they would forward my contact information to his mother, although that’s no guarantee of her contacting me. They said that they could resend my info to my son directly when he turns 18 since he would then be his on payee. But again there’s no guarantee of him wanting to contact me. This is kind of painful since his mother left me and took him. She’s a piece of work. I wasn’t abusive or anything.

      On another note, the children’s benefit is considered child support by courts. The court will not touch your benefit or your other children’s benefits either. I read that on the SS newsgroups awhile ago in passing.

      OH yeah- since I know we all have medical bills of some kind and possibly other cash flow problems here is another tidbit – your SS money is UNTOUCHABLE for any judgement garnishments. Its ILLEGAL for any bank or entity to take your disability funds or even put them on hold. If they do, get a lawyer and sue everyone involved. Seriously, SUE SUE SUE. You should get the debt wiped out and possibly a cash settlement to boot.

    • Anonymous
      February 6, 2007 at 12:03 am

      grawpyler, and ziggysmom

      I am the golfer dude from NC. I got my benefits two years ago. I read up on the process here, asked a lot of questions here and elsewhere, piled up all of my test results, prepared my application, and filed. I was turned down round one. They told me that they didn’t think my CIDP was permanent 12 months a year. I think they thought it was relapse/remitting. In my case it is not.

      I needed to provide a statement from my Dr. showing CIDP was permanent in my case, and that I had permanently lost feeling and strength, and was not expected to regain that use. I also had a letter from Vocational rehab. I was working with them to try to locate work. They did their own assessment and said I was unemployable. Between those two letters I answered all of their questions and was approved.

      The time for me, from the start to check in hand, was nine months. I felt fortunate to be approved so quickly, having heard of others taking years.

      The thing that stinks is, when you get your benefits, it took me out of medicare, income wise. So I had to wait two years for some kind of health coverage. I got some for the kids through the State, but none for me and the wife. They say you are unable to work, and are medically messed up. But they make you wait two years for health insurance. It’s like, how can you pay for it without a job, and you can’t work to pay for insurance because you are messed up. Go figure.

      But if you are an illegal from outside the country who snuck in, you can qualify for health care. Go figure.

      That is my soap box for the day.

      I am glad you got benefits. It helps the financial picture. I know it isn’t what you would have made, but it is better than the nothing I can make now !!

      Ziggysmom, we have talked a little bit before….. Keep those records. If you can prove it, you can get it. Make your first application as good as you can. Write everything down and think it through. You can get an application online and work it through before you actually send it in. Make sure your answers stay consistent all the way through. They tend to ask the same question different ways. I made copies of what I sent in, so when they called back, I could refer to my application and stay consistent. There are a few keywords they are looking for. If you meet the criteria, you can get it done. I didn’t use a lawyer. I did it myself.

      Good luck
      Dick S.

    • Anonymous
      February 7, 2007 at 2:59 pm

      Hi all,
      I never even thought of filing for Soc.Sec.Disability until reading threads on this site. THANKS TA YOUSE GUYS!
      I first applied in September 06. Two months later, I had a telephone interview with someone at Soc. Sec. Then, in December, a stack of new forms about “Activities of Daily Living” had to be filled out.
      Ya see, last summer, two of my doctors gave me two years left to my life. I have dealt with that, and I live with reality and at least I have the advance knowledge of it and am planning things so it will be easier on my life-partner after I am gone, dealing with the business and other things. I know what the two doctors told me is true, as things are now happeneing exactly how they told me things would happen. BUT I DON’T WANT TO GO INTO THAT NOW….

      So, I called my person assigned to me, at Soc. Sec., and asked, “How much more diabled can you be, than a prognosis of death within 2 years?”.
      His response was that they still needed all the new forms filled out, no matter what…YEESH…

      So, then I get a letter in January, that now, on FEB9, I have to go and see one of their neurologists, who is going to perform a never and muscle test, so they can see for themselves…
      I then called back the person at SS, and asked if he didn’t get all my records from my doctors. He replied he got over 200 pages from my G.P., on all the things that happened in the past 5 years, but it didn’t show a prognosis. Same with my neuro, and Pulmonologist…YEESH.
      Back on to the phone calling each of my doctors to fax SS my prognosis.
      …Called back my SS guy, and he said that according to SS rules, I still must do this test on this Froday, so they can see for themselves…
      So, I wanted to reach this doctor I am supposed to see, to see if I should bring in any records, since I always keep a copy of my records, (two boxes full), as well as copies of my films from MRI’s and CAT scans.
      So, I first call information….there is no doctor under that name/address listed in the phone book. Since I live in north county San Diego, I decide to try maybe to see if this guy had an office way down in San Diego. Yeah, information had a listing there. So, I called the office there, and asked the staff person about this. Her response was, “Yes, he performs all kinds of tests, (neuro, as well as any kind of test requested by SS), for people with Social Security. And this is all kept hush-hush, and all info is kept strictly between the doctor himself and Social Security, No staff member is to have anmy type of dicussion, and no records are kept with his staff. She could nor would anwer my simple question about bringing in records. Wow–so I don’t even know if this guy is a neurologist—WOW-THIS IS SOMETHING OUT OF A SPACE CADETS…LOL
      So, now I wait the last two days for this final stage, (I hope), before they decide if I do or do not get accepted. And I find it weird I am seeing a doctor that I don;t even know if he is a neuro. WOW
      And I see through various threads, some of you don’t get accepted and have to use one of those Social Security lawyers you see advertised on TV all the times, until you finally get accepted.
      has anyone else gone through this crap?

    • Anonymous
      February 7, 2007 at 7:52 pm

      When I applied for SSI, I was denied because they said that my husband made too much as an active duty soldier in the military.Our son is autistic & epileptic, and they cancelled his SSI and I had to go to court to fight their claim that I had to reimburse SS because my son could “grow out of it.” I won my case last year (after a 3 yr wait for a hearing) and they are trying to overturn the judge’s ruling.As for me, they told me that “because CIDP is a syndrome & not a disease, I am not eligible for benefits.” I just don’t get it! How is it that someone who has been fully paralized TWICE between Feb of ’03 & July ’05, & who has a special needs child, doesn’t qualify, but some idiot who PRETENDED to be mentally retarded for years so his mother could bilk the system for thousands & thousands of dollars gets away with it, AND NEVER HAS TO PAY THEM BACK? All of that money should have went to deserving people like you & I, but instead, they now expect all of us to pay them back so they can make up what they’ve lost to these 2 idiots. SS needs to get their **** straight, and research the disorders of the individuals before making a final decision. GOOD LUCK TO YOU ALL! I hope that your experiences with the SS system is better than ours has been.

    • Anonymous
      February 9, 2007 at 4:30 pm

      I sent a PM while waiting for my account to re-activate after changing email….

      Medicare begins 2 years after your SSD begins…….

      I was already on SSD for over 10 years when I got GBS…..

      I applied by telephone, never had to fill out a form, didn’t visit their offices. The GSA called and did everything verbally. I was awarded benefits immediately.

      A while after I went through the process, I helped two other people fill out their paperwork for SSD, and both had no problems and were also awarded their benefits.

      It is the job/function of the people at SS, with whom applicants first encounter, to turn you down – to deny benefits!
      They look for any reason in your paperwork to deny your claim. Unless the initial paperwork is filled out “just so”, the turn-down is assured.
      That means going through the long (2 years average) appeal process, but after doing so, a Federal Law Judge makes the final determination and usually awards benefits (assuming you have a bona fide claim).

      There are lots of companies and lawyers who will do the appeal and they get a standard percentage of the amount awarded which is all the benefits that would have accrued. It used to be that some of these companies would process the initial application, but because they don’t get any money if you are approved right away, they no longer do that initial application and will only take on your case when you are denied.

    • Anonymous
      March 11, 2007 at 11:23 pm

      Finally got my son’s benefit. They mailed a check.

      They also mailed me a medicare prescription drug benefit application even though I am not on medicare and I don’t believe I am eligible until this summer. I will apply for that and see what happens.

      Does anyone here have medicare and another insurance and use both? I am really interested in seeing how that works.

      The system isn’t great or perfect but I really appreciate FDR right about now.

    • Anonymous
      March 12, 2007 at 5:15 pm


      Did they find your ex? I guess they must have if they mailed the check to you. Did he get half? That is if we are speaking about your older son ๐Ÿ˜ฎ .

    • Anonymous
      March 14, 2007 at 1:40 am


      Did they find your ex? I guess they must have if they mailed the check to you. Did he get half? That is if we are speaking about your older son ๐Ÿ˜ฎ .[/QUOTE]
      No, they didn’t find her Ali. ๐Ÿ™ My social worker filed a claim for both children so they wouldn’t overpay my son who lives with me. That way if my other son applies before age 18 he will get all the benefits due until then otherwise after his 18th birthday they will cut a check for the backpay for my son who is with me.

      They had to give it 30 days for some reason, Im not sure why.

    • Anonymous
      April 20, 2007 at 11:55 am

      Bump for the person with ssdi questions.

    • Anonymous
      April 20, 2007 at 1:47 pm

      I tried for SS in January 2001 and was turned down three times, so I quit. When I started having major trouble again, I filed a disablitity claim in April 2006 and yes you have to fill out a ton of paperwork and I was sent to two different doctors. I felt good when the last doctor looked at me and said a lot of people come in that don’t need disabilitity but you do. I finally got a letter in August saying that I was approved and I got my backpay check in September. I started my regular check in Oct. BUT beware to save some of the back pay money for IRS . My husband and I had to pay $2500.00 in taxes because of it. Also they automately sent me a Medicare card and took the premiums out. I had to fill out a card saying that I did not want Medicare and that took about another month to get that money. The reason I didn’t take Medicare was they wouldn’t pay for over half of my medicines. Please check all this out if you have another insurance plan already or it could end up costing you more by being on Medicare. My husband is 60 and will have to keep me on his insurance until I am 65 (I am 55). The back money and monthly payments sure help. I always felt that I was a burden to my husband. Please fill the forms out and go to the visits and they will pay you so much a mile for you to go see the doctors they are sending you to. If you have to pay someone to take you they will have a form for that. Good Luck and if I can be of any help with information please let me know or you can e-mail me personally [email][/email]

    • Anonymous
      April 20, 2007 at 1:52 pm

      I have been rendered as permanently disabled but because I haven’t worked in the past five years, they say I am not eligible. Has anyone else had experience with this? I am 40 this year. The extra help would be lovely since I have to pay for my extra meds that our insurance won’t cover.

    • Anonymous
      April 20, 2007 at 3:48 pm

      [QUOTE=kel0317]I have been rendered as permanently disabled but because I haven’t worked in the past five years, they say I am not eligible. Has anyone else had experience with this? I am 40 this year. The extra help would be lovely since I have to pay for my extra meds that our insurance won’t cover.[/QUOTE]
      You might be eligible for welfare or SSI. Yeah there is a certain amount that you have to have contributed via working in order to be eligible. Luckily I made enough in the first 3 years of the 5 year period to be eligible to get SSD.

      This month SS sent me a medicare part A and B card that is supposed to be effective in July. The pamphlet they sent was not that informative but did layout the basics.
      If you don’t choose a prescription plan youre penalized through higher costs.
      If you dont choose a HMO/PPO or other medicare part B substitute youre penalized through higher premiums. The same with Part D coverage.
      I already have insurance so I have to mail them back the card refusing their part B coverage. Part A coverage seems to be free. There are no penalties for already having insurance and joining medicare later.

      There was NO information about what medicare part B covers treatment wise or the various HMO options might cover.

      I think I should start a thread to see who gets their IVIG and or Chemo through medicare and what the costs are and who gets those same services through HMO/PPO plans obtained through medicare and what those costs are.

    • Anonymous
      April 20, 2007 at 8:35 pm

      Yes, Medicare Part A has no extra price/premium…..

      ….BUT there is a small “penalty” for not signing up for Part B at this time.
      You will be charged at a higher rate if you ever do sign up for Part B at a later date,
      and the premium gets higher the longer you are not enrolled.
      IMHO The “higher” rate is not enough to be a reason to pay for Part B now.

      I used to have Part B, and then I dropped it because I’m included in my wife’s coverage from her work (and it’s very good, doesn’t cost us anything to have, and when she retires that is one of the benefits that continues for life).

    • Anonymous
      April 20, 2007 at 9:17 pm

      The pamphlet they sent said I wouldnt be penalized for declining part B now if I had insurance currently. Is that different than what you experienced? How much did they say you’d have to pay? I was told it was $94 a month.

      The only reason my wife has stayed on her current job is because of the health benefits for our family. I pretty much wouldnt be being treated if not for that and we have another baby on the way now so she is going to have to stick it out a lil longer.

      Thanks for the info Ken. I figure if enough people reply someone could get 70% of the whole process

    • Anonymous
      April 21, 2007 at 1:02 am

      There may be different rules now, but 6 years ago when I told “the SS” I was dropping Part B, I was sent info that showed how much my premium would increase when if I went back.

    • Anonymous
      April 21, 2007 at 9:50 pm

      Another thing to watch for concerning the the Medicare, even tho they say the A & B are free, is they have $900 dollar deductable. They will get you somewhere.

    • Anonymous
      April 22, 2007 at 1:47 pm

      [QUOTE=AJR]Another thing to watch for concerning the the Medicare, even tho they say the A & B are free, is they have $900 dollar deductable. They will get you somewhere.[/QUOTE]
      Its my understanding that part A is free which is the hospital care and part B has a premium. So on top of that they both have a $900 deductible? For every procedure or is it yearly? ๐Ÿ˜ฎ

    • Anonymous
      April 22, 2007 at 6:01 pm

      Part A is free…..if…..

      [QUOTE]The following is a listing of the Medicare premium, deductible, and coinsurance rates that will be in effect in 2007:

      Medicare Premiums for 2007:

      Part A: (Hospital Insurance) Premium

      Most people do not pay a monthly Part A premium because they or a spouse has 40 or more quarters of Medicare-covered employment.
      The Part A premium is $226.00 for people having 30-39 quarters of Medicare-covered employment.
      The Part A premium is $410.00 per month for people who are not otherwise eligible for premium-free hospital insurance and have less than 30 quarters of Medicare-covered employment.
      Part B: (Medical Insurance) Premium

      $93.50 per month*

      Medicare Deductible and Coinsurance Amounts for 2006:

      Part A: (pays for inpatient hospital, skilled nursing facility, and some home health care) For each benefit period Medicare pays all covered costs except the Medicare Part A deductible (2007 = $992) during the first 60 days and coinsurance amounts for hospital stays that last beyond 60 days and no more than 150 days.

      For each benefit period you pay:

      A total of $992 for a hospital stay of 1-60 days.
      $248 per day for days 61-90 of a hospital stay.
      $496 per day for days 91-150 of a hospital stay (Lifetime Reserve Days).
      All costs for each day beyond 150 days
      Skilled Nursing Facility Coinsurance

      $124.00 per day for days 21 through 100 each benefit period.
      Part B: (covers Medicare eligible physician services, outpatient hospital services, certain home health services, durable medical equipment)

      $131.00 per year. (Note: You pay 20% of the Medicare-approved amount for services after you meet the $131.00 deductible.)
      Additional information about the Medicare premiums, deductibles, and coinsurance rates for 2007 is available in the September 16, 2006 Fact Sheet titled, “Medicare Premiums and Deductibles for 2007” on the [url][/url] website.

      *Note: If your income is above $80,000 (single) or $160,000 (married couple), then your Medicare Part B premium may be higher than $93.50 per month. For additional details, see our FAQ titled: “Medicare Part B Monthly Premiums in 2007”


      here’s the link: [url][/url]

    • Anonymous
      April 24, 2007 at 1:01 am

      Yikes Ken. Big motivation to get with a HMO/PPO with part B.

      Funny part is Medicare A is cheaper than my insurance through my wife except I know the coverage is very very very different.

    • Anonymous
      April 24, 2007 at 1:48 am

      When I was on Part B, from about 1998 to 2000, the HMO was the “big thing”, and they were competing for the business….

      So, there was no additional premium above what The SS deducted normally!
      And the services were great.

      Just as we were about to be covered under my wife’s employment, we received notice that the HMO getting rid of the Medicare HMO portion and we would be on our own……

      We were lucky!

    • Anonymous
      April 24, 2007 at 9:37 pm

      My current plan is to use my wife’s insurance for another 2 years and a year from now add my kids and wife to a selfemployed plan and use FMLA to keep our insurance for the additional year. After that I will move to whichever is the best hmo/ppo I can find that takes medicare.
      I can only imagine how difficult this whole process is for someone on drugs and getting older. Its criminal to make seniors and the disabled go through this.

    • Anonymous
      November 20, 2007 at 10:11 pm


      more info

      Im on medicaid and medicare.
      Medicaid pays my medicare part B and D premiums.
      Because Im on both I can change providers for either B or D every month if I want.
      I can also select the HMO options for Medicare and Medicaid will pay the premium.
      I pay nothing for the medicare part D gap.

      If I return to work somehow I can continue medicare for 7yrs 9mos. NO MATTER HOW MUCH I MAKE!!!!!!!!!!!! Same $93 premium.

      I can finally afford my prescriptions.

    • Anonymous
      November 21, 2007 at 1:52 am

      T – and all this started when you got your new bed ;). Sorry, Just couldnt resist.
      Seriously though, has anything changed with regard to SS disability since you moved to a different state? I have heard some ‘stories’ about the difference between states and wondered if anything has changed for you?

    • Anonymous
      December 2, 2007 at 7:15 pm

      Hi Ali! Hope you enjoyed your Thanksgiving.

      ๐Ÿ™‚ at the bed

      Well nothing has changed in regard to disability. I only deal with the Social Security Administration now and forever. So the state is out of it.

      But my change of states is alot better since I now get medicaid and vocational rehab is ALOT better than in GA.

      Here are some notes for those interested

      Medicaid in South Carolina will pay as a secondary to medicare. They pay all premiums and the gap. If you make too much money they still might pay your premiums. If you are working disabled you can still get medicaid.

      All scripts are 3-5 dollars.

      Before choosing a part D provider use Medicare’s website to make sure all your meds and dosages are covered.

      If you have medicare – enrollment for a part d provider or HMO is once per year and you can always go back to regular medicare coverage. If you receive medicaid too- also called extra help/extra assistance then you can change providers ANYTIME but it amounts to changing every month!!!!!!!!!!!!!!!!!!!!!!!!!!!!


      If you get disability SS has a program called ticket to work where your local vocational rehab office tries to get you a job or training/school so you can work again. In my state they will pay $1700 a semester for tuition or pay for training programs or even send you to their training center to teach you how to work in Information Technology.

      If you go back to work

      Every month you make more than the minimum ssi payment – $640 this year and $670 in 2008 – is called a “Trial Work Month”. It doesnt matter if you make $1000000 or $700. After 9 of these months in any 5 year period you enter a grace period. You still receive your full benefits this entire time.
      After the grace period -12 months of working – anytime you make more than $940 you will not receive a check*********************************************
      Your children wont receive a check************************************
      If you make $930 – you still receive a check**********************
      If the next month you dont work at all or drop below $940 your checks will resume

      If you never earn more than $640 in a month you will never have any trial work periods and never enter the other areas.

      If you go back to work full time and make more than the $940 limit although your checks will stop Medicare will stay for about 8 years!!!!!!!!!!! 93 months to be exact as long as you still have the same condition. Your premium will remain the same.


      The Vocational Rehab process basically amounted to – proving my disaility – medical records etc. Meet with a Benefits Coordinator who makes sure you know what will happen to your benefits if you start working. Then finding you a job or getting you training etc.

      Walgreens is big on hiring disabled people. The CEO’s child is disabled and couldnt find a job so he got Walgreens to start trying to get 30%(?) of the corp’s workforce as disabled.

      They have insurance with no preexisting conditions clauses for $30 a month but you have to work at least 30 hours a week.


      Im not sure if Im up to working right now. Im in school and that is working out weird so Im not sure whats going to happen.

      Just posting this in case people need information while going through this.

      Im going to ask SS whether that break down of what happens after the trial work period is accurate since I was told that by my benefits coordinator. I will go search SSA to see if I can verify that too.

    • Anonymous
      December 2, 2007 at 7:37 pm

      My two cents worth on SS disabilitiy. I got mine last August and then I had to wait 60 days before I got my check. Be sure with medicare that the plan you choose will pay for your medicines. I am on my husband’s medical insurance which cost us $945.00 per month, but when we looked at medicare it would have cost me more money due to deductables, and it would cover half of my medications. Remember everyone, if you get your back pay at the end of the year you have to pay federal taxes on that. Yes, I know, I had to pay $2,000.00 to our federal govement for my money I earned that was pulled out for social security. Isn’t life just a dream:)

    • Anonymous
      March 14, 2008 at 2:05 am

      I advise everyone needing IVIG on medicare to use Sterling RX as your part D provider. I paid $3 friggin dollars for 250g of IVIG!!!!!!!!! I’ve gone into the catastrophic area and since I have medicaid as my secondary I paid $1 for generics and $3 for name brands up until now- now they are all freeeeeeeeeeeeeeeeeeeee!!!!!

      I also got my infusion place to write off all my old bills through their financial assistance program. Accredo is the place that did that for me.

      Vocational Rehab has given me a scholarship too. It won’t pay all my tuition but it will pay half of the yearly bill.

      Bump this for those in need!

    • Anonymous
      May 31, 2009 at 6:42 pm

      Part D Insurance Update

      Sterling RX has bumped up their monthly premiums to $8 more than Medicaid will pay. They didn’t notify me either.
      I am moving to AARP’s RX Saver plan which is a rebranded United HealthCare.
      Authorizations for special meds like IVIG or Rituxan take 24-72 hours.
      I will let you know how they work out. has an excellent website that will allow you to compare costs and features of various Part D providers. You can list your prescriptions and they will present only insurers that have your meds in their formulary.
      The site also lists your year to date deductibles and coverages for Part B. You can see how much they pay to your doctors and how much coverage you have list for things like Physical and Occupational Therapy.

      SSDisability Note

      If you use your “Ticket To Work” (a program from Social Security that provides funds to different organizations in return for them retraining you or helping in some way for you to be able to work again.) you will not receive a disability status review during your time in whatever program it is you are using.
      So, if you go down to your state Vocational Rehabilition center and give them your ticket to work after deciding to attend some training classes in Accounting, the entire time you are working with them you will not have to worry about reviews.

      There will be no cost of living increases for the next 2 years.

    • Anonymous
      June 1, 2009 at 6:52 am

      I have been dealing with Humana Medicare and to me I am a bit disappointed compared to them last year. They did very well last year but this year not as good. It’s a PPO provider and in my area there are not many doctors. And they threw in a deductible. I plan on changing over this year to something else

    • Anonymous
      June 19, 2009 at 8:46 pm

      How do you like the PPO option? I’m kinda suspicious of how well it would work out for me.

      That same thing happened to me in regard to Sterling with the performance dropoff. They were great the first year then they bumped up every fee and cancelled their coverage gap assistance.
      AARP RX Saver actually approved me in about 48 hours for IVIG. So far so good.

    • Anonymous
      June 24, 2009 at 3:30 pm

      This all sounds very greek to me I have been a diabetic for thirty years and had CIDP for the last 8 months And now to top it all off I have passing out 10-30 times a day I never thought I was going to retire but now all of a sudden have had to deal with all this Work disability SS and everything else its getting tiring of going around in circles with all these people Work is fighting my claim. SS havent heard anything about yet and State assistance said give them two months. I have a house payment and a 5 & 2 year old to try to look after State didnt believe even with drs documentation that my wife has to stay at home with me because I cant be left alone What next

    • Anonymous
      June 24, 2009 at 11:06 pm


      There are different kinds of disability. I’m not sure, but it sounds like you are talking about more than one thing.

      Worker’s Comp will pay you for an on the job injury and resulting disability, if any, for THAT SPECIFIC JOB. If you painted houses, were hurt and could no longer paint houses, say you had an amputation (heaven forbid).

      SS Disability requires that you be unable to do ANY substantial work. Not just your old job, but ANY job. Your employer cannot fight a Social Security claim. It is between you and SS. Normally you need to be out of work, (because if you CAN work you are disqualified.) After you meet the lack of employability, then you try to prove you can’t do any job. That requires medical tests, documentation etc. You need your Dr. to supply information, and it really helps if your Dr. agrees that you cannot work.

      State assistance varies from state to state, but they should process your paperwork now, if you are entitled to benefits. If SS does grant you disability down the road, your State benefits may be reduced or stopped, depending on your situation.

      The big thing here is to keep your cool. Don’t let the system intimidate you. If you are unsure, ask the question. A lot of times they have such a high caseload, they just do the minimum and move on. They don’t ask how they might really help you, or offer programs, they just do the minimum and go on.

      I know it is challenging to work your way through the system. But if you are entitled to benefits, you should seek them.

    • Anonymous
      June 24, 2009 at 11:47 pm

      I agree with Dick S on all the types of insurance. I have a question. Have they been testing you for why you are passing out, like MRI brain, bloodwork, that type of thing-blood sugar ok?

    • Anonymous
      November 27, 2009 at 11:19 pm


      Changed to AARP’s Medicare Part D plan – MediCareRX Saver Plan
      Medicaid pays my premiums. The AARP plan is run by UnitedHealthCare.
      Got IVIG prior authorization in less than 24 hours.
      I enter catastrophic the first month of every year since my IVIG runs $25k appx.
      I pay no premiums through AARP for anything during or after the catastrophic phaze.
      Great plan.
      Customer service is generally pretty good. You can hit a snag if you are trying to get a medicine not on the formulary or without prior authorization.

      Social Security and Divorce

      Some states consider your child’s SS benefits as child support.
      Some states do not consider your child’s benefit as child support.
      Your SSD benefits can be attached for child support or alimony payments.


      IVIG ———-

      No infusion centers in a 100 mile radius will take me as a patient with medicare and/or medicaid. I have to do home infusions.

    • Anonymous
      November 29, 2009 at 11:39 pm

      I don’t qualify for SS(D)I due to work credits.

      But, I’ve been on SSI since age 18.
      I actually prefer it since I have medicaid and not medicare.
      So I don’t have to worry about parts A,B,C,D .. yada..
      And co-pays are cheap.
      And I don’t have a premium to worry about.

      But, its income based. So, if I make too much they will cut back my benefits.
      I also can’t have a savings acct.
      They literally keep tabs on all my assets.

      But, its made my life easier in that I am fortunate to have health insurance when a lot of people my age (20’s) don’t.
      And with prior health issues a private company won’t touch me.

      However.. with this new health reform aren’t we all generally screwed?

    • Anonymous
      January 14, 2010 at 4:02 pm

      I am going to bump this thread, because I am researching SSDI, and I came across this info.

      I have an appt with a neurologist on Feb. 4. I am 51 years post GBS, I was 4 when I got it in 1958. I talked to my Mom at Christmas, because I thought it was in Dec. 1959, which would have made it 50 years. … Anyway, dealing with fatigue, muscle weakness, neuropathy and pain. :rolleyes:


    • Anonymous
      March 6, 2010 at 3:19 am

      [QUOTE=diagnonsense]I don’t qualify for SS(D)I due to work credits.

      But, I’ve been on SSI since age 18.
      I actually prefer it since I have medicaid and not medicare.
      So I don’t have to worry about parts A,B,C,D .. yada..
      And co-pays are cheap.
      And I don’t have a premium to worry about.

      But, its income based. So, if I make too much they will cut back my benefits.
      I also can’t have a savings acct.
      They literally keep tabs on all my assets.

      But, its made my life easier in that I am fortunate to have health insurance when a lot of people my age (20’s) don’t.
      And with prior health issues a private company won’t touch me.

      However.. with this new health reform aren’t we all generally screwed?[/QUOTE]
      actually we aren’t screwed with the new healthcare initiative. more people working or with no insurance will actually be able to get treated without going broke

      I’m on medicaid and medicare and you definitely have alot more options with Medicare. I know its rough not being able to get the work credits together. Luckily I worked and made a decent living before getting sick. One time in the SS office I actually saw a retired guy who makes about a third of what I do and that’s pretty horrible. If you are up to it try vocational rehabilitation and see about getting some training or schooling so you can work in some way. SSDI and Medicare are really alot better than SSI and Medicaid. You have more options with those programs. A lot of doctors won’t take Medicaid where I live so without Medicare I’d be out of luck. Since I have both, after one IVIG treatment I’m in catastrophic mode and don’t pay for any scripts or copays the rest of the year.

      I hear Wisconsin is a great state as far as Medicaid and health insurance plans go.

    • Anonymous
      March 6, 2010 at 3:24 am

      [QUOTE=jeaniebug]I am going to bump this thread, because I am researching SSDI, and I came across this info.

      I have an appt with a neurologist on Feb. 4. I am 51 years post GBS, I was 4 when I got it in 1958. I talked to my Mom at Christmas, because I thought it was in Dec. 1959, which would have made it 50 years. … Anyway, dealing with fatigue, muscle weakness, neuropathy and pain. :rolleyes:

      I hope your application goes well. Just remember to get all your medical records and explain your worst days as your ability level and not your best. When I’m at my best I can run(in braces) and work in the yard all day etc. When I’m bad I can’t get to the bathroom without worrying about falling. Since I never know how that will hit me its impossible for me to make concrete plans and appts and be 100% sure I can make it. If I listed my abilities the way my ego told me I’d have been denied.
      Post back with your outcome.