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SSDI is being terminated....

bottkota
bottkota Member Posts: 22

WTH!!!! My letter came yesterday and this is what it said:



It was previously determined that you had breast cancer and then a recurrence of breast cancer. The evidence shows an improvement in your conditions with no evidence of cancer recurrence. Although you now have some residual left shoulder problems, these do not severely restrict your ability to do normal daily activities.......therefore, it has been determined that benefits must be stopped......your last check will be for 10/2013





Let's just say I went into freak out mode yesterday when I got the letter. Even after tons of paperwork stating that I was still in treatment and having to travel over 200 miles round trip for my drug, they are saying I am now able to work. Are you kidding me? I went down to the local SS office to start the appeal process. Yes I am NED....but only because I am on treatment. I haven't stopped treatment because of NED. Who would seriously hire me when I have treatment 2 days a week for two weeks and then one week off????



To say I am pissed is an understatement. As if living with this disease isn't stressful enough now I have to deal with our STUPID government. My husband can't support us on his income alone,we need my SS. Plus I need my Medicare. My office co-pays are $60 each visit, that's $120 a week, $240 per cycle in just co-pays. Since getting on Medicare I don't have those office co-pays. I lose SS and Medicare, might as well go and find a bridge and a cardboard box to live in, because we will sink FAST!!!



Any advice for me? The appeals process will take months I was told, in the meantime, I will continue to receive benefits while it is under appeal, but I could be responsible for paying it back if my appeals is denied. REALLY????? What a load of shit!



Oh man.....this SUCKS!!!



Cathi

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Comments

  • kayrnic
    kayrnic Member Posts: 111
    edited August 2013

    No advice, but what a load of crap! From everything I have heard terminal cancer is unquestionable when it comes to SS benefits! What the hell? I sure hope someone with experience in this area will come along and help!

  • heidihill
    heidihill Member Posts: 1,855
    edited August 2013

    I'm sorry this is happening. I'm hoping there is a way around this silliness. Sorry I don't have any advice but there are people on this forum who know way more about this and should be coming along soon.

  • Padiddle
    Padiddle Member Posts: 139
    edited August 2013

    Oh my!   Would you share more with us?  How long have you been on SSDI?  Did you recently have to resubmit paperwork?  I can't imagine.  I'm dumbfounded.  Jean

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited August 2013

    As the regulations are currently written, no one, even someone with a terminal disease, is automatically entitled to any benefits from either our state or federal governments. And as we have learned over the years, each state decides when and if they will review a specific case. Currently, many states are under political pressure to reduce their SSDI rolls dramatically. I suspect you are a "victim" of this pressure. One of our long time posters DEAK went through the appeal process recently after her case was reviewed in CT. Her response was just as passionate as yours. Here is a link to that thread. Perhaps there is information there that can help you?

    http://community.breastcancer.org/forum/8/topic/786512

    I am very sorry that you will have to wage this fight, but it sounds as though you don't have another option.

    *susan*

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2013

    These are FEDERAL programs.  Your representative in Congress has a LOCAL office staffed with individuals to help you with issues like the one you are having.  CONTACT that office, and if you don't get the help you need, call the Washington DC office for your member of Congress and ask for the staff person who works on "health issues" and Federal programs.  Good luck.

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited August 2013

    I read on another thread that this happened to someone else.  She had to appeal it.  I want to say it took a couple of months but she was re-instated.  So sorry you're going through this.  

    Here's the thread (it's many pages so you may want to type "disability terminated" in the search box for the forum "Insurance and other Financial Issues"):  http://community.breastcancer.org/forum/113/topic/770569?page=24#idx_701

    - Penny

  • ibcmets
    ibcmets Member Posts: 312
    edited August 2013

    cathi,

    I'm very sorry this happenend to you.  I believe the clerical people being pushed to eliminate people from SSDI do not understand the extent of our illness.  It's a pain in the but.  You've received lots of good info here.  Go to your local office.  No one with mets should ever have to be denied, especially after you've had a recurrence.

    Please let us know when this has been changed.  They just may need more detailed info from your onc.

    Hugs,

    Terri

  • bottkota
    bottkota Member Posts: 22
    edited August 2013

    The guy at the local office was very nice and helpful when I went there yesterday. I had to fill out the same question packet that I had already filled out TWICE with all the same questions. I am hoping that my onc will be willing to write a letter on my behalf as to why I am still in active treatment even tho I am NED. When I learned of my cancers return in Nov. 2009, I applied for disability. I was approved in Feb. 2010 but was back paid to Nov. 2009 so I have been on disability for almost 4 years now. It went under review in April and I filled out all the paperwork, then I had to fill out more paperwork a month later and they just made their decision on the 23rd. What bothers me the most is that the government will pay all these illegals and those on welfare without a blink of their eyes but those of us on disability who truly need it are put thru this BS. Because of a few citizens who have used and abused the system....screws the rest of us, those of us that truly need this. Thanks for letting me vent. I will check out those other threads. And I will keep you posted on what happens.



    Cathi

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2013

    Here is what is important regarding any of us on SSDI. When visiting your doctors do not gloss over your side effects, be blunt. If you reach NED and your doctors notes indicate that you have no disabling side effects, then a review will likely suggest you are now cleared to return to work.



    I am so sorry you found yourself in this position. Absolutely read Deaks odyssey with this and PM her. I'm sure she can give you great tips as she won her appeal but it wasn't easy.



    As Deak found out the hard way, SSDI is not guaranteed to go on forever. There are reviews and if you no longer meet the criteria of too disabled to work you may find yourself challenged by a review.



    The review does not take into account whether someone would hire you but whether you are physically capable of work.



    So please everyone tell your doctors about every ache and pain, every difficulty performing every day tasks, every little thing that makes life a challenge. You have to be vigilant here to maintain your benefits.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited August 2013

    Yes, these are Federal programs, but I thought the SSDI thread had indicated that they are administered by the states. I would love some clarification. Hate to have this in my mind incorrectly. Also interested in how anyone without a social security number could receive benefits from the social security administration. -- learning all the time --

    *susan*

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2013

    They are administered by the state. Each state has a disability determination board. Medicare decisions are also determined by a state agency. The money comes from SSA but whether you qualify or not, are approved or not, is a state agency decision. Your local SSA office often is out of the loop on the decision process so don't go sit for hours at the local office waiting to ask a question, call the disability board if you are being reviewed.



    Some states are more strict then others. So collectively we don't always have the same result.

  • LauraOntario
    LauraOntario Member Posts: 60
    edited August 2013

    I'm Canadian, so I don't understand your programs.  I just know that added stress is the last thing you need right now!!!  Sending hugs and prayers out to you.

  • aaoaao
    aaoaao Member Posts: 245
    edited August 2013

    I feel so bad for you because I've gone through this process more than once.  When I first have cancer it took me almost 3 years before getting the okay.  I applied on my own and was denied, I appealed and was denied, (although they determined that I was somewhat disabled and couldn't perform the work that I was doing before I should still be able to find some work due to my education).  I hired an attorney and we had a hearing and the judge found in my favor.  I had to pay the attorney 25% of my final judgement and then I received all the money I should have been paid monthly.  My disability ended when my MO said I was doing fine and was going from montly exams to 6 month exams because I was stable. 

    However, within 3 months of this my cancer was back and a tumor was found. I was now Stage iV.  In my state, if you have Stage IV breast cancer you are not only entitled to SSDI or SSI, you are also entitled to a faster review and approval process.  It's called Compassionate Allowances.  I was determined disabled within 3 months and began receiving payments.  There is suppose to be a 5 month waiting period but because I was receiving benefits recently they didn't impose the waiting period.  My case comes up for review every 3 years but if I am still Stage IV I won't be denied benefits in my state.  I live in Illinois.  I don't know if all states have the same rules.

    What is the Compassionate Allowances Initiative?

    The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's definition of disability. It is not a separate program from SSA's two disability programs, SSDI and SSI.

    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.

    I hope that you get a speedy resolution to your case and I hope that it is favorable.

  • aaoaao
    aaoaao Member Posts: 245
    edited August 2013

    Attached below is the link for the SSA Compassionate Allowances website. It looks like it is nationally. I'd give it a try. I had to ask my SSA adjudicator to fast forward my application due to my eligibility for CA policy.

    http://www.socialsecurity.gov/compassionateallowances/

    http://www.ssa.gov/compassionateallowances/conditions.htm

    The above link lists the conditions eligible for CAL review.  Breast Cancer with Mets is listed.  You should definitely approved for benefits and quicker review.  It's possible they may not be aware of this program since not many people probably qualify or are aware of it.

  • aaoaao
    aaoaao Member Posts: 245
    edited August 2013

    Sorry to be redundant, but I hope this can help people here get the benefits they deserve.  The actual description for CAL is below:

    Effective Dates: 10/24/2008 - Present Previous | Next

    TN 1 (10-08)

    DI 23022.125 Breast Cancer

    COMPASSIONATE ALLOWANCE INFORMATION

    BREAST CANCER

    DESCRIPTION

    Breast cancer forms in tissues of the breast, usually the ducts and lobules. It occurs in both men and women, although male breast cancer is rare. Individuals with breast cancer meeting the criteria under the Listing of Impairments have a poor prognosis.

    ALTERNATE NAMES

    Breast Carcinoma (Stage IV), Metastatic Breast Carcinoma, Metastatic Breast Cancer, Ductal Carcinoma of the Breast (Stage IV), Metastatic Ductal Carcinoma, Metastatic Ductal Cancer, Lobular Carcinoma of the Breast Stage (IV), Metastatic Lobular Cancer, Metastatic Lobular Carcinoma, Recurrent Breast Cancer

    DIAGNOSTIC TESTING AND CODING

    The following may be used to diagnose the disease: mammogram, clinical breast exam, ultrasound, MRI, or biopsy (needle or incision).

    TREATMENT

    Treatment may include surgery, chemotherapy, radiation, and hormone therapy.

    PROGRESSION

    If the cancer is inoperable or unresectable, treatment with radiation or radiation and chemotherapy/hormonal therapy can be employed for palliation.

    The 5-year survival rate for individuals with stage IV breast cancer when appropriately treated is 20%. Prognosis is usually poor.


    SUGGESTED PROGRAMMATIC ASSESSMENT*

    Suggested MER for Evaluation: A pathology report and an operative report are the preferred methods for documentation.
    In the absence of these reports, the adjudicator may use a physician's opinion that indicates the cancer is inoperable or unresectable based on described objective findings.
    “Inoperable” refers to a physician's opinion that surgery would not be beneficial based on a review of imaging studies, laboratory results, and physical examination findings. Unresectable cancer is established when the operative report indicates that the cancer is not completely removed or the pathology report notes that the surgical specimen has positive margins.

    Suggested Listings for Evaluation:

    DETERMINATION

    LISTING

    REMARKS

    Meets Listing

    13.10A, B, or C

     

    Medical Equals

    13.10 A

    Inoperable or unresectable Breast Cancer equals Listing 13.10A as its prognosis is similar to this listing. (A physician's opinion stating that the cancer is inoperable or an operative note stating that the cancer was not completely resected is required. In place of an operative note, a pathology report indicating positive margins may be substituted.)


    * Adjudicators may, at their discretion, use the Medical Evidence of Record or Listings suggested to evaluate the claim. However, the decision to allow or deny the claim rests with the adjudicator.

    Last Updated: 9/30/08

    Office of Disability Programs

  • aaoaao
    aaoaao Member Posts: 245
    edited August 2013

    Below is the listing of what evidence is need for CAL.  All I had to have was a note from my MO stating my cancer was Stage IV.

    Program Operations Manual System (POMS)

    Effective Dates: 10/24/2008 - Present Previous | Next

    TN 1 (10-08)

    DI 23022.125 Breast Cancer

    COMPASSIONATE ALLOWANCE INFORMATION

    BREAST CANCER

    DESCRIPTION

    Breast cancer forms in tissues of the breast, usually the ducts and lobules. It occurs in both men and women, although male breast cancer is rare. Individuals with breast cancer meeting the criteria under the Listing of Impairments have a poor prognosis.

    ALTERNATE NAMES

    Breast Carcinoma (Stage IV), Metastatic Breast Carcinoma, Metastatic Breast Cancer, Ductal Carcinoma of the Breast (Stage IV), Metastatic Ductal Carcinoma, Metastatic Ductal Cancer, Lobular Carcinoma of the Breast Stage (IV), Metastatic Lobular Cancer, Metastatic Lobular Carcinoma, Recurrent Breast Cancer

    DIAGNOSTIC TESTING AND CODING

    The following may be used to diagnose the disease: mammogram, clinical breast exam, ultrasound, MRI, or biopsy (needle or incision).

    TREATMENT

    Treatment may include surgery, chemotherapy, radiation, and hormone therapy.

    PROGRESSION

    If the cancer is inoperable or unresectable, treatment with radiation or radiation and chemotherapy/hormonal therapy can be employed for palliation.

    The 5-year survival rate for individuals with stage IV breast cancer when appropriately treated is 20%. Prognosis is usually poor.

    SUGGESTED PROGRAMMATIC ASSESSMENT*

    Suggested MER for Evaluation: A pathology report and an operative report are the preferred methods for documentation.
    In the absence of these reports, the adjudicator may use a physician's opinion that indicates the cancer is inoperable or unresectable based on described objective findings.
    “Inoperable” refers to a physician's opinion that surgery would not be beneficial based on a review of imaging studies, laboratory results, and physical examination findings. Unresectable cancer is established when the operative report indicates that the cancer is not completely removed or the pathology report notes that the surgical specimen has positive margins.

    Suggested Listings for Evaluation:

    DETERMINATION

    LISTING

    REMARKS

    Meets Listing

    13.10A, B, or C

    Medical Equals

    13.10 A

    Inoperable or unresectable Breast Cancer equals Listing 13.10A as its prognosis is similar to this listing. (A physician's opinion stating that the cancer is inoperable or an operative note stating that the cancer was not completely resected is required. In place of an operative note, a pathology report indicating positive margins may be substituted.)

    * Adjudicators may, at their discretion, use the Medical Evidence of Record or Listings suggested to evaluate the claim. However, the decision to allow or deny the claim rests with the adjudicator.

    Last Updated: 9/30/08

    Office of Disability Programs

    To Link to this section - Use this URL:
    http://policy.ssa.gov/poms.nsf/lnx/0423022125 DI 23022.125 - Breast Cancer - 10/24/2008
    Batch run: 01/27/2009
    Rev:10/24/2008

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2013

    Compassionate allowance entitles you to an expedited review by the adjudicator, not a guaranteed approval. The standard to meet is that your disabling condition will prevent you from working for 12 months or more.



    That's why it's so important to keep our doctors apprised of side effects that interfere with our daily routine, that prevent us from functioning normally. The miracle of reaching and maintaining NED is a game changer, hence the second member of BCO finding themselves challenged on the continuation of benefits.

  • bottkota
    bottkota Member Posts: 22
    edited August 2013

    Thanks for all the info. I am one of those people who glosses over my side effects. As long as I don't stop moving I am fine....but if I sit for even 10 minutes my legs are like standing on needles and I have to hoble around before I can get the pain to leave. I am tired all the time, I sleep crappy at night. But I always say I am great, my fatigue is mild when some days it is horrible and that I am fully active. I have neuropathy in my fingers and I can't do things with my hands for long periods of time. I just hate to "bother" my onc with my side effects. She has given me a script for Ativan 30 day supply with like 5 refills to take at night to help with sleep, because I don't need that bother. Guess I need to stop beating around the bush at the doctors office and just be blunt. Thanks chickadee for opening my eyes to it.



    Cathi

  • RangerMom
    RangerMom Member Posts: 205
    edited August 2013

    I got approved in one week! and my next review the letter states is 5 to 7 years.  Hope I'm still alive then!  So sorry you are going through this.  I can understand how you must feel! Especially when things were looking up for you being NED and wham you get hit with this.  How can they not understand that you wouldn't be NED without treatments, crazy!

  • RangerMom
    RangerMom Member Posts: 205
    edited August 2013

    chickadee - I told my MO lst visit that the SEs were so much better since switched to 7on 7 off for Xeloda vs. the 14 on 7 off.  I do struggle with this because I know she will write that down.  Now it does not mean the SEs are gone, just less severe.  I have new shoulder joint pain that I added to my list of bone pains. But I will remember to list or speak of all my issues.  I just hate sounding like a whiner.

  • aaoaao
    aaoaao Member Posts: 245
    edited August 2013

    Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

    Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. 

    Compassionate Allowances Conditions

    Breast Cancer - with distant metastases or inoperable or unresectable

    I don't know about the 2 cases you're talking about or how their cases were handled, but all I had to do to get CAL and a quick approval was for my MO to send a letter simply stating I had Stage IV breast cancer.  It was approved because it is a obviously disabling condition expecting extensive medical treatment and treatment effects and expected to result in death as listed in the CAL requirements.  At least that's what I was told.  However, if I was turned down I would appeal because the likelyhood of winning is almost guaranteed.  I was approved previously with fewer issues than I have now.  I guess it is up to the adjudicator who reviews your case but mine told me Stage IV breast cancer is pretty much a guaranteed approval because of the extensive treatment and side effects factor.  Also the fact that statistics show that death within 24 months is highly likely. (I don't believe statistics but the government uses their own stats for things like this).  I'd at least talk to my adjudicator about CAL.  Mine didn't volunteer this info but when I asked she handled it quickly and favorably.  I guess you never know unless you try. 

    Of course, I agree with you that people should keep their doctors aware of everything that they're feeling because it could help with any questions that might arise and also they may be able to help you treat those side effects.

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2013

    I agree that stage IV is "pretty much" a guaranteed approval in the initial go round with appropriate documentation. However at review time if our doctors information doesn't indicate disabling conditions that prevent us from working we may find ourselves with a letter indicating we no longer qualify until our diagnosis once again becomes disabling.



    As more people seek qualification for various programs like SSDI, then SSA really has no choice but to tighten up the process and start insisting adjudicators stick to the letter of the law. I've read various articles about reviews that used to get a quick swipe now being worked with a fine tooth comb.



    I'm sure they have noticed that we are living longer as treatments become better. So now they are questioning more closely whether we are disabled or not.

  • Chickadee
    Chickadee Member Posts: 469
    edited August 2013

    You can see below that the focus is on the ability to work. They could give a rats ass about whether anyone would hire us with all the appts/treatments we have. It all comes down to your physical abilities, so speak up at your doctors. It's really not whining.



    From SSA website:





    Medical Reports



    Physicians, psychologists, and other health professionals are frequently asked by SSA to submit reports about an individual's impairment(s). Therefore, it is important to know what evidence SSA needs. Medical reports should include:



    medical history;

    clinical findings (such as the results of physical or mental status examinations);

    laboratory findings (such as blood pressure, x-rays);



    diagnosis;

    treatment prescribed with response and prognosis;



    a statement about what the claimant can still do despite his or her impairment(s), based on the medical source's findings on the above factors.



    if the claimant is an adult age 18 or over, this statement should describe, but is not limited to, the claimant's ability to perform work-related activities, such as sitting, standing, walking, lifting, carrying, handling objects, hearing, speaking, and traveling.



    in adult cases involving mental impairments or mental functional limitations, this statement should describe the claimant's capacity to understand, to carry out and remember instructions, and to respond appropriately to supervision, coworkers, and work pressures in a work setting.

  • TXGigi
    TXGigi Member Posts: 39
    edited September 2013

    I applied for SSDI back in 2009 and was turned down because I had not worked in 10 years. The reason for that was a I taking care of my Mom with dementia and my dad with congestive heart failure.  I eventually put my mom in a home and my dad passed.  I was thinking about gettting a part-time job but 2 weeks later I was diagnosed.  I had horrible back pain and just thought it was stress.

    My neighbor who is exactly my age, husband is a millionaire and she gets SSDI for a bad back.  Right now she is out on her luxurious boat flying fishing.

    God has given me a good life, I can live comfortably without SSDI but hearing about people who need it and then the ones who don't deserve it make my blood boil.

  • DEAK95
    DEAK95 Member Posts: 6
    edited September 2013

    Hi Cathi,

    I got your messages and have replied once and am working on the 2nd reply tonight. I'm on board with Chickadee's postings here and from previous Soc Sec postings on SSDI. Unfortunately the SSA is "compassionate" at the beginning of our Stage IV diagnosis journey, getting the ball rolling and waiting the 5 months to start receiving the $$$, if we meet all the requirements!!! But, since last year I have heard of others in states beyond CT having to go through their 5-7 yr review with a fine tooth comb and receiving a "doom and gloom" letter putting us "under the microscope" when our scans are NED and were still having the life saving treatments we all undergo!!! Anxiety we all Do Not Need!!! Yes I recd this letter on June 17, 2012 and had to wait the 3-4 month waiting period for an answer on October 6, 2012. I had a lawyer on the back burner but ultimately did not need one, thank goodness!!! I am a lucky lady to have a great husband working and am under his benefits and don't need Medicare (except Part A which is Hospital Coverage at no cost). I'm crossing my fingers that I havent been admitted, yet!!!

    What everyone needs to know is:

    1. Speak up at your Onco Appts about all problems you are having: anxiety, joint issues, sleep issues, pain and neuropathy issues and all our fun digestive issues, etc... so it's all documented. If you have anxiety and depression and are on meds to prove that, the Onco (or Other MD) is monitoring your rx. I myself, am just happy to have the time not working to rest up in between. I do too much and I have to slow down!!! I'm not a whiner, ( I am now after almost losing my SSDI...) so I did not have some of the issues documented and did not need sleep medications, etc but pain meds and others were documented!!!

    2. They dont care about "immoral or illegal issues" and what's right or wrong for us so have the pity party and get to the next step!!! We all know this is a terribly wrong issue at our Stage!!!

    3. Start writing all the physical, psychological and social issues you are having and connect it to the meds you are taking. Do your research on your Meds. Ask the nurses and your MD for help!!!

    Examples: ie.. i have anxiety and sleep disorders which affects my mental concentration at my previous job, ie... I have hand neuropathy which affects my typing on a computer for even 15-30 minutes at home let alone for 8 Hours in my Customer service position, etc... Find as many reasons why you cant do ANY job, not just your previous job!!! If you say you might be able to work 4 hours/day or any part-time hours, they will Deny your SSDI!!! Be firm and tell why you can't do any job!!!

    4.  Have your Onco MD (and any other MD's that you can connect strong reasons to: "Why you can NOT work???" ) write an EXTRA Letter/s on your behalf to be added to your SSA RE-Consideration File (Call the SSA rep to give you the contact name and Fax# to fwd this letter(s) ASAP). Also read what the MD writes before it is sent in because you don't need another generic letter stating" This patient us under my care for Stage 4 Cancer and should not be working due to side effects from her condition"... Make sure it is specific to side effects and how it makes you unable to work.

    5. Call your Congressman (woman). I went on the website and got the phone #s at the Capital in my State and called the Office and the secretary and confirmed what to do. I filled out an Online Questionairre and followed up after 1 month and got a Congressman's Aide to find my info and he did, and a Congressional Inquiry was made on my behalf into the SSA Office. Dont forget to get names and phone#'s of all involved and I wrote each of them a nice Thank You after the final letter was Approved!!! They can't guarantee it will help but how many people will go the "extra mile" to not have to hire a Lawyer and Lose $$$ that we paid into the system for!!!

    It was a Very Exasperating time in my life that should never have been questionned!! The SSA should be out haunting the other people who have figured out how to "buck" the system and not we, who truly have a diagnosed condition!!!

    I hope this info truly helps those in need!!! Pat :)

  • aaoaao
    aaoaao Member Posts: 245
    edited September 2013

    I agree with you 100%.  Document everything!  You also right that you need to be specific.  Let them know that you can't type because of neuropathy, have no concentration due to chemo, etc.  I went to the hearing on my first disability claim and what they do is have an employment specialist sit in and she has employment ads that she will run through to help the judge rule if that job is doable by you.  The judge tells her which symptoms/side effects you have and she searches her database for jobs you "should" be able to do.  They don't take into account whether or not you'd be hired for those jobs just that you can do them.  So the more SEs you make them aware of the better for you.  You doctors also need to be complete and specific when they send documentation about you to SSA.  Any unknowns they will assume favorable to your working.

    I agree people with Stage IV cancer need rest and lots of treatments/procedures and should automatically get SSDI/SSI.  I get angry when someone gets governmental aide for be an alcoholic/drug addict.  My ex owns a bar and a liquor store and you wouldn't believe the number of these "disabled" people come in to drink whenever they get their benefits.  When they've drank the funds away then they beg him for any work he can throw their way for free drinks.  They can work but choose not to.  The money they get they just buy more liquor with.  The government actually is aiding their "disease".  I think they should only get aide for a specified period of time and during this period they have to be in rehab or getting only government approved help.  If they can't resolved their problem the aide ends.  Giving them aide as long as they're drinking only encourages them to keep drinking.  They know how to manipulate the system and they do it well.

    Sorry for the rant but it always bothers me when these people get help for a disease they can, with effort, control. However, when someone has an illness that they didn't ask for and can't control they get no help. 

  • netty46
    netty46 Member Posts: 68
    edited September 2013

    Yes I have advice go to a Psych doc and start adding the mental part in.  This affected us all emotionally and mentally.

  • aaoaao
    aaoaao Member Posts: 245
    edited September 2013

    I agree.  Make sure your doctors document EVERYTHING you're feeling/going through.  It really is the only way to protect yourself against the sometimes cruel policies of the Social Security system.

  • cracks
    cracks Member Posts: 2
    edited September 2013

    I know my SSDI will be reviewed in 3 years (I've got 2 left), and I'm worried. When I was rediagnosed, I was on a layoff list. To keep my great health insurance, I retired on disability from new york state. After short term disability ended, my long term disability insurance required me to apply for SSDI. Got approved in 2 weeks.



    Now I'm NED, was on taxol with perjeta and herceptin for the past two years. Stopped taxol in february. Doing reasonably well, although my previous job was very technical. I'm worried my chemo brain won't keep up. Also I need to take a recertification exam in my profession. It expires it 2 years and is $1300...is it worth studying for and taking

  • aaoaao
    aaoaao Member Posts: 245
    edited September 2013

    Personally, I'd only pay to take the test if I planned on going back to work in that field.  I'm an accountant and I know I can't reliably perform the functions of that job.  Darn chemo brain!  I don't know if SSA can find out if you were able to pass the recertification test and use that to say you have the ability to perform your previous job.  It is up to you how you feel and what you think you want to do in the future.  If you want to stay on disability because you think you're unable to perform your job well, I'd make sure your doctors note any and all side effects you're feeling.  Don't be brave...the SSA wants to know what you can and can't do and will often use the findings against you if possible.