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SSDI is being terminated....

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  • bottkota
    bottkota Member Posts: 22
    edited September 2013
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    And the plot thickens!!! I swear I want to shoot everyone in the government right now.



    So I get a letter in the mail today stating that they sent me a letter on the 8th of August informing me that my disability was terminating and that I need to give an explanation as to why I waited until Sept. 3rd to file for an extension of benefits while my appeal is in process.



    WHAT?!?!



    So I wrote a really LONG explanation about what happened. My letter was NOT dated August 8th, it was dated Aug. 23rd, I made a copy of the letter. Also that letter was NOT mailed until Aug. 27th, I also made a copy of the postmarked envelope. I enclosed those two copies along with my long explanation. And I was at the social security office the day I received the letter, Aug. 30th, a Friday and the start of the Labor Day holiday weekend.



    I am so mad, I could spit nails!!! Another way the government is trying to get out of paying me my extended benefits while I am in the appeals process. Our government is JACKED UP!!! And every single person in our govenment including the president need to be FIRED!!!!



    Am I the only one who thinks this is just wrong?!?!? Too top it off...I am awaiting scan results and that has my anxiety off the charts...as if I need this shit to add to the already high anxiety levels.



    For crying out loud....this is insane!!



    Cathi

  • Chickadee
    Chickadee Member Posts: 469
    edited September 2013
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    I would recommend you pull in some big guns at this point. Contact your local congressional rep office. They have staffers who are tasked with helping constituents deal with this kind of incompetent bureaucratic boondoggles. None of the federal agencies like congressional appeals and usually have staff whose only job is investigating them.



    I know from experience working disasters for FEMA. We had a small group responding to congressional inquiries and they took precedence over any other direct complaint.

  • aaoaao
    aaoaao Member Posts: 245
    edited September 2013
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    I know exactly what you mean.  I went to the IRS office, AGAIN, because I never got my tax refund from last year's tax return.  I called them when I received a letter stating that although they received my tax return it was pulled for possible fraud due to my address on the return being different from previous tax returns (I MOVED PEOPLE).  So they said I needed to go into my local office with my ID and tax return and verify who I was and that the tax return was filed by me and no one else.  So I go in and talk to a lady and she supposedly put all the information in the computer and said it was resolved and I should be getting the refund in 6-8 weeks.  This was on May 17.  No refund comes.  I go back to the office this week and the representative told me that they never received my tax return.  WHAT!  I showed him the letter from the fraud division saying "they received my tax return" and I brought the tax return in with me to my first visit to his office.  He said the fraud division is a separate unit and he's not familiar with their procedures.  He said there were NO NOTATIONS in the computer that I was ever in their office prior to this visit.  Then he told me he made a copy of my return and will put it in to be processed...and I should receive my refund in ....wait for it....6-8 weeks.  I literally looked at him and told him cancer was easier to deal with than the IRS and that I would rather be having chemo than to be in their office.  As I left his cubicle, people waiting for their turn were laughing at the stupidity of the system.  I told them I'd probably win the lottery before I'll ever see my refund.  They laughed again.  I also told the agent that "helped" me that I'd probably be seeing him in a couple of months...should I bring cookies?  I'm not usually difficult but they teed me off just too much.  I think government employees don't care because they can do a lot of mistakes and blame it on something else.  They also aren't easily fired. It's job security without job competency.

  • Chickadee
    Chickadee Member Posts: 469
    edited September 2013
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    Just a little defense. Most government employees are like you and me. I've been one briefly for FEMA and for 30 years I serviced govt agencies as a phone worker in and around wash DC.



    Like any large corporation they have good and bad but its really not fair to bash them all.



    The processes are mired in complexity (thank you congress) and when you get enmeshed in that complexity (its a living hell i know) the best way to clear the fog is a congressional appeal.



    Aaooaa, interestingly I suffered the same IRS headache many years ago and a call to my congress woman's office resulted in a check within weeks of my call.

  • aaoaao
    aaoaao Member Posts: 245
    edited September 2013
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    I agree not all government employees are uncaring or no longer as fired up about their jobs.  However, I've met a lot of bad employees because my son owns or has owned a couple of businesses and so has his father.  Between the federal government, the state government, the county government, and the city government you end up feeling like a pinata and they're the sticks.  A lot of the time, even in the same governmental unit, no one seems to know what to do or what the other parts of the unit are doing.  I filed my return back in March and still no refund...if I owed them I'd be charged penalties and interest...I bet I don't get either.  My son's been trying to get his business registration approved and it is being held up because of a liability he doesn't owed.  He even got the person who owed the debt to sign certified paperwork to clear this up.  The section holding the registration says it's another section's responsibility and they say it's the other section's.  It gets interesting when both sections, separately, advise him to put the business in another person's name. As a CPA I informed my son that this is HIGHLY illegal.  He actually owns the business and the business assets and will be conducting the day to day operations.  To use another person also would put that person in a position of being held responsible for taxes he didn't collect.  Basically, putting someone else in the same position my son is in.  I was stunned that TWO separate state employees recommended he do this.  I then wondered how many businesses are illegally established using the ADVICE given to them by the state who I'm sure would deny they ever said that.  I have MANY other stories of governmental employee incompetence.  I'm sure you were committed to your job but there are a lot of others who could care less. 

  • bottkota
    bottkota Member Posts: 22
    edited September 2013
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    Well I emailed all 3 of my state's representatives. Who knows if this will produce anything....but at least it is done.



    Just frustrated with the system. I am not nearly as mad today as yesterday...just frustrated with the politics of it all.



    Thanks Chick for the advice to contact my local reps.



    Cathi

  • bmaybee67
    bmaybee67 Member Posts: 2
    edited November 2013
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    Hi Cathy,

    Did you ever get any resolve on this?  I sure hope so!!

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2013
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    no one is routinely tracking debit cards in the SSA as a matter of course. The funds on those could have any origin not just your benefits.


    Appeals should be handled with professional help and they will guide you.

  • lynn1234
    lynn1234 Member Posts: 90
    edited November 2013
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    I was just approved for SSDI and felt so relieved. Will I have to worry about debit card surveillance?

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2013
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    NO

  • Sherman3480
    Sherman3480 Member Posts: 6
    edited November 2013
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    What triggers the re-evaluation, Chickadee? Is this just a routine thing ie something everyone on SSDI goes through at the end of 5 years?

  • aaoaao
    aaoaao Member Posts: 245
    edited November 2013
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    I also agree with Chickadee...don't worry about surveillance by the SSA. The staff/systems needed to go through the millions of transactions on a daily basis is impossible to do. Also the use of your debit card can be done online and family could also use it for you (if you give them access) and even the disabled can shop (wheelchairs, etc..how do they think we eat and clothe ourselves). So the use of a debit card really wouldn't tell them much and is such weak proof of a person being disabled or not disabled it really isn't worth the hassle. Your biggest concern is how your doctor continues to writeup your symptoms/side effects/continued illness and if you have a evil "friend" who tries to report you for spite or retaliation. That is why it's very important to reveal private information only to those you trust. Most people don't need to know how you support yourself. You could be living off savings, work pension, support from family members, etc. They just don't need to know.

  • divinemrsm
    divinemrsm Member Posts: 6,003
    edited November 2013
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    Lynn, I see you were diagnosed just this year with stage iv. Did you feel the need to apply for ssdi immediately upon you diagnoses? How long did the process take? I am considering apply for ssdi, and am almost 3 years dealing with stage iv, yet worry that I would be turned down as I have been scanning NED. Yet I hear what some of the women on these boards are saying about how much work takes out of you, and I feel like I am having more anxiety and wearing down more this year at work.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2013
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    I am so sorry for you, Cathi, having to deal with this mess. And how can someone go through all this administrative stuff when dealing with crippling fatigue and ability to concentrate among other things.

  • lynn1234
    lynn1234 Member Posts: 90
    edited November 2013
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    TheDivineMrsM...When I found out that I had mets, my onc said that as stage 4 I would be eligible for disability. I was in bad shape and not sure how things would proceed, so I went ahead and applied for SSDI. I applied online, it was a fairly simple application and the whole process took about one month from submitting the application to approval. Because of the stage 4 diagnosis, the application was expedited through Compassionate Allowance.


    Being able to spend real quality time with my family while I still have the energy is precious to me and I haven't missed work at all, although I have missed my friends from work. IAll my energy was going to work and work related things. Now I can use that energy to make special dinners for my kids' birthdays, do sewing projects, go for walks with them and just spend time talking with them. I feel like this will be more important to them after I'm gone than if I worked another year or two.

  • aaoaao
    aaoaao Member Posts: 245
    edited November 2013
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    Exactly what Lynn said is true. You usually have to be disabled for either 12 or 18 months but I believe that might be waived for Stage IV breast cancer. Either way you qualify. When you file ask for Compassionate Allowances because it vastly cuts down on the processing time from 1 to 1 1/2 years down to at most a couple of months. All I need was my application and a note from my doctor saying I had Stage IV breast cancer with mets to my spine. You can even file the application on line. It's best to have your medical records handy because they do ask questions about doctors you've seen and treatments you had. Don't be afraid if you miss something or don't have exact dates because I didn't have all that info either. When I first filed for disability when I was IIb it took almost 2 years to get it approved and I had to go to an appeals hearing. It was cut off after my treatments and their side effects ended. However, when I applied after being dx with Stage IV, I applied again under Compassionate Allowances and I was approved in just over a month. Definitely do it...being able to focus on your health and family in the precious and shorten time we have is invaluable. I hope it works out for you and it should. Being NED shouldn't make a difference but the doctor doesn't even need to disclose that because that is actually a judgment call not one that can be guaranteed since with Stage IV mets can sneak up on you with very few symptoms. Of course, I don't wish that for you and hope you remain NED for a very long time.

  • bottkota
    bottkota Member Posts: 22
    edited November 2013
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    this was finally resolved. I got the letter from SS on Halloween. I think the only reason it was decided so quickly is because one of my state reps got really involved. When I had called them (ss) to let them know that my cancer was not longer inactive and give them all my information so they could check into it...I was told that the appeal process was still gonna take several months. So I again contacted my state rep and let him know that this should be a no brainer and that because my cancer was back and I was going back on chemo that there should be no appeal hearing. Well there is going to be no hearing, the letter stated that they determined that I was still disabled. Ummm.....duh!!!! So I think the involvement of my state rep really helped in my favor. I am glad it is one thing off my plate and I can concentrate on me and getting myself back to NED!!!


    Bon....I did go to the Mayo in Rochester MN in April 2010. They pretty much told me that they wouldn't change my treatment plan since it was working. Haven't been back since.


    Cathi

  • pearlady
    pearlady Member Posts: 390
    edited November 2013
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    Bottkota so glad that you got this straightened out. It's so distressing to have to deal with these kinds of things when our main focus to battling the beast. Hoping that you now can back to NED with one less thing to worry about.


    Monica

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2013
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    divine ms M. You will want to review with your medical professionals the ways in which your diagnosis does or is likely to prevent you from working for 12 months or more or has for sometime. You will need to identify your expected last day of work because of the disability. NED or not it's the SE's and disabling conditions you must emphasize. Reviews are typically 3 years but can be pushed out given your verifiable condition. They can come sooner if something doesn't add up.


    The purpose of SSDI insurance is our safety net after paying in for our working life. Yes the masses are now trying to qualify for any funds they can. In some states that makes the approval more difficult but not impossible because we have a terminal diagnosis, hence the compassionate allowance review.


    Apply online. Follow up with any path reports you have so its quicker than a doctor. Once in the system shift your contact to the state disability determination board and identify your case worker. He/she will be you guide now, not the local SSA Office.


    Our documentation is crucial and I'll say it till the cows come home, you stop telling your doctor you feel just fine, when that's BS. You detail you challenges and difficulties at every visit and make sure it's documented.


    Just because you've adapted to pains, aches, nausea, convinced family members to pick up the driving and the errands, medicated yourself into some functional status so you can shlep into work, that doesn't warrant an "I feel fine."

  • aaoaao
    aaoaao Member Posts: 245
    edited November 2013
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    Getting disability with a Compassionate Allowance condition is usually a fast and positive process. The Adjudicator has the final word but given the poor prognosis and severity of the disease it usually is a fast tracked approval. I posted some information that was useful for me.


    https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022125


    How does a person with a CAL condition apply for disability?


    There is no special application or form that is unique to the CAL initiative. Individuals with a CAL condition apply for benefits using the standard SSA process for filing claims for SSDI, SSI, or both SSDI and SSI benefits. SSA will expedite the applications of those with a CAL condition. Applications for disability may be filed online, in the local field office, or by calling our toll-free number 1-800-772-1213. To learn how to apply for disability benefits please click How You Apply.


    How long does it take SSA to make a decision on a claim for individuals with CAL conditions?


    Individuals with CAL conditions may receive a decision on their claim in a matter of weeks instead of months or years.


    It can vary depending on several factors, but primarily on:

    • How quickly we obtain medical evidence from a doctor or other medical source;
    • Whether a medical examination is necessary in order to obtain evidence to support the claim; and
    • If the claim is randomly selected for quality assurance review of the decision.


    For more information about the application process, SSA has a disability planner available at www.socialsecurity.gov/dibplan.


    If you have further questions, you may call our toll-free number, 1-800-772-1213 or TTY 1-800-325-0778. Our representatives will be happy to assist you.


    What else have you done to help people with CAL conditions?


    As of July 30, 2011, we have reduced the paperwork burden for applicants with CAL conditions by eliminating the work and education history questions from the application. We recognize that this information is often not needed to make a decision on disability claims for individuals with CAL conditions due to the severity of conditions.



  • ibcmets
    ibcmets Member Posts: 312
    edited November 2013
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    Cathi,


    So glad this got resolved for you. Good girl on being pro-active & getting a hold of your state reps. Hopefully, you can relax a bit in order to continue treatment.


    Terri

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2013
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    Yes for congressional appeals! Don't hesitate when they have you in a vice.

  • GrammyR
    GrammyR Member Posts: 297
    edited November 2013
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    Cathi- I am a little confused as I believe SSI is a separate issue than Medicare. I was unable to keep up w/job as an RN after becoming almost paralyzed 18 months post chemo. I was approved for disability and Medicare after a 6 month wait ( no insurance-no job for a while) State Medicaid may be something you might be eligible for ( I was not ) It is based on your financial status and can be tough to get on depending on finances status. The " Obamacare " plans may be also something to check out. Likely because of income from your hubby too that may be put you at higher income levels.


    Crazy thing is you are Stage IV and should be approved for Federal SS. Have your MO fill in some paperwork and or/get a Disability lawyer involved. They usually don't charge until you get a settlement that would include back pay.

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2013
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    Grammy, no confusion she is was and still is approved for SSDI. This was a review issue where they challenged her continued coverage. She appealed and won with the help of her representative.


    It was NOT an SSI issue which has different rules and approval processes.

  • aaoaao
    aaoaao Member Posts: 245
    edited November 2013
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    Bon is correct about the difference between SSI and SSDI. I will add that you can get Medicaid while also getting SSDI and Medicare. Medicaid is based on your income and assets. Those getting a low enough SSDI and have very few assets can also get Medicaid and it can pick up your monthly fee for Medicare and the Drug Prescription Coverage Plan, Part D. If you fall into that category of low income SSDI, you can get Medicaid before you qualify for Medicare.

  • rengeko
    rengeko Member Posts: 7
    edited November 2013
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    i was also under the impression that there is a section in the SSDI rules that says that just because symptoms improve does not mean one will be thrown off if the disabling condition is still present, and we all know, stage iv doesn't go away.


    ETA-or not.


    http://www.ssa.gov/OP_Home/cfr20/404/404-1594.htm


    ETA again-i think i'll stop glossing over my symptoms as well. i mean, we all want to think we're better off than we are, right?