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How Many Stage 4 Girls are getting SS disability..

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  • Frap
    Frap Member Posts: 7
    edited December 2020
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    Thank you Chicagoan, I couldn't have described the life sucking stress better and believe me I've expressed all the following SE effects: HFs, cramping, diareaha, joint pain, mouth sores, sleep disruption, fatigue, weight gain as many of you are suffering through as well..

    Thank you Momchichi for your first hand on the job advice at SSA. Unfortunately I haven't quit working for fear of my app being rejected, I just keep plugging along at work. Fortunately I'm working at home and have 2 great guys working for me to cover during all the medical appts/scans etc. 2 more years to go b4 retirement though if I can bump it up to disability all the better.

    Anyways, thanks ladies for your input and many blessing to you and all cancer survivors.

  • ninetwelve
    ninetwelve Member Posts: 328
    edited January 2021
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    Last week my second disability application was approved and I received my first payment, post-dated back to when I stopped working in March of 2020. I should not have been denied, but I think, looking back, my assumption that MBC is automatically approved every time was part of what led my claim to be denied. There was an earlier post advising applicants to get their own medical records and supply them. I didn't do that. I also minimized my symptoms and underreported pain and concentration issues, both with my oncologist's office and during the SSDI interview. (We always have to be such brave little soldiers.)

    Getting denied was really stressful and so demoralizing that I went to one of those legal services which help people get their claim approved. They did collect a fee, but I think it was worth it for the peace of mind that this support gave me.

  • candy-678
    candy-678 Member Posts: 4,098
    edited January 2021
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    NineTwelve- Thank goodness !!!! I always hated to hear you were initially denied. Government can be so frustrating. Why do they have to make it so hard for some. I had no trouble at all. And I hate to hear of other MBC sisters that have to fight for their right to get what they truly deserve. Congrats !!!!!

  • kbl
    kbl Member Posts: 2,731
    edited January 2021
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    NineTwelve, I thought about you all last week. I was going to come here and ask. You must have read my mind. I’m so very glad you were approved. What good news. Thank you for coming back and letting us know.

  • ninetwelve
    ninetwelve Member Posts: 328
    edited January 2021
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    Thank you, candy and KBL. I let myself exhale after I got the news! Retirement feels official now, even if premature. I'm relaxing for the first time in months, enjoying the change of administration, and to celebrate, I'm watching a musical every day for 30 days. (Currently on day 4. Suggestions welcome.)

  • cowgal
    cowgal Member Posts: 625
    edited January 2021
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    NineTwelve - I suggest Cat Ballou and Grease.

  • kbl
    kbl Member Posts: 2,731
    edited November 2021
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    It’s been a while since this post has been active, but I have a question. I just realized when I go, my husband could get survivor’s benefits. I hadn’t even thought of that. I am wondering how that works. Being on disability, I get the full amount I would have received at 67, but I’m 60. He just turned 61. When I die, does anyone know how it would work for him? Would he get a percentage of my full retirement? I have no idea how that works and would like to be able to let him know what to do when that time comes.

  • seeq
    seeq Member Posts: 1,093
    edited November 2021
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    KBL - I think the spouse can get whoever's amount is higher, not both. For example, before my dad passed, he and my mom were both getting SS. After he passed, she was able to keep just his SS payment, which was higher than hers, but not both.

  • kbl
    kbl Member Posts: 2,731
    edited November 2021
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    Thank you, SeeQ. What I’m wondering is would he get my disability amount, which is the full amount, or what I would have been getting at 62 if I filed. Right now I’m making the most I could get.

  • seeq
    seeq Member Posts: 1,093
    edited November 2021
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    KBL - I was curious about this for my husband, too. I found this: https://www.disabilitysecrets.com/resources/social....

    There are two additional categories for people carrying for kids under 16, and disabled spouses that I didn't include here.

    • You are at least 60 years old but not yet full retirement age.
      • You will receive 71.5% - 99% of your deceased spouse's SSDI benefit.
    • You are at least full retirement age.
      • You will receive 100% of your deceased spouse's SSDI benefit

    But...

    Own retirement benefit. For widows who are of retirement age, the benefit that they could receive based on their own work history may be higher than the money that they receive from their deceased spouse's SSDI benefits. You can choose to receive whichever payment is higher.

    Working. If you work while collecting a widow's or widower's benefit, your monthly benefit may be reduced, depending on your age and your earned income. For more information, see our article on working and survivors benefits.


  • kbl
    kbl Member Posts: 2,731
    edited November 2021
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    Thank you, SeeQ. Still confusing, but I did tell him to apply for survivors benefits right away. Hopefully, we still have plenty of time

  • tangandchris
    tangandchris Member Posts: 934
    edited November 2021
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    Do we get extra monthly for dependent children with our monthly payment?

  • kkcita
    kkcita Member Posts: 20
    edited November 2021
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    yes, your dependent children receive an SSDI benefit monthly. My experience was that when I made my own application and was approved, then they started the kids’ applications.

  • candy-678
    candy-678 Member Posts: 4,098
    edited September 2022
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    Bumping this Thread.

    I have been getting SSD for 3 years now for my MBC--- Compassionate Allowance Program with Social Security Disability. I just got a notice that Social Security is doing a review of my case. I have forms to fill out. Now I know that this may just be a formality that the Government does, but have any of you had to do this too? Should I be concerned that they will review my case and kick me off of SSD? I am still under continuous cancer care--- seeing my MO every 3 months, scanning, and taking active treatment.

    I hope this is just a formality.

  • moissy
    moissy Member Posts: 371
    edited September 2022
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    Candy - I’ve been getting my SSDI for several years and have not encountered this yet myself. However I do remember there was someone who posted a few years ago who had received a notice like yours. She filled out the forms and her coverage continued. As long as you are metastatic there should be no issue with continuing coverage

  • divinemrsm
    divinemrsm Member Posts: 6,076
    edited September 2022
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    candy, I never had a review like yours, but since you are on active treatment, and scan and see your oncologist regularly, and as a stage iv patient, it seems likely you will be given the green light to continue with SSD.

    I found this on the Social Security page that says the law requires a review every x number of years to determine if you’re still disabled.

    https://www.ssa.gov/ssi/text-cdrs-ussi.htm

  • bookgal
    bookgal Member Posts: 20
    edited November 2022
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    Hi I will likely be joining this "club" soon due to progression . I have had MBC for quite some time but have been working full time. Employer has indicated there could be a change in my status. I have been googling and dare I say "doom Scrolling" trying to figure out what I am going to do, and how to navigate SS disability. I find it all very overwhelming and confusing.

    Thankfully I found this thread and have been reading back a few pages. I have so many questions that are literally keeping me up at night. I'll ask at my doctors office on my next visit as to if they have any resources. Anyone who can share their experiences and knowledge would be helpful and appreciated.

    How long did it take from applying to actually getting a payment? How long for Medicaid or Medicare?. l read something about 5 months after the award. Is that true in all cases? I don't know how I'd survive 5 months without any income. I am in treatment and possibly will need radiation too. How on earth could I pay for that without any income? Do I have to stop working altogether before I apply? I would think yes.. Do I need a SS lawyer? I also have seen here where some have been wrongly denied SSDi on the first application which then took them some time to get approved. A poster named ninetwelve said they used a legal service to help get approved. Are there organizations that answer these type of questions and how would I find them?

    What resource was helpful to you when applying for SSDi?

    Thank you in advance. In the meanwhile, I'll continue scrolling.

  • olma61
    olma61 Member Posts: 1,022
    edited November 2022
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    Hi, book gal, it is easy to do the Social Security application online so I would recommend doing that first and not hiring a lawyer unless you are denied. Lawyers are not free, they take a percentage of any lump sum benefit you are awarded also. Unless you can get a Legal Aid Society attorney to take your case.

    I was sent some papers in the mail to fill out about my disability and had to provide my oncologists contact information and I was approved very shortly after I returned those papers. No hassle. Stage IV breast cancer has a 'compassionate allowance' from Social Security, and although some people on here had to fight for their benefits, it isn't supposed to be that way.

    You WILL have to wait two years to qualify for Medicare but you might be eligible for Medicaid in the meantime. Once you know your benefit rate you can find out if you qualify for Medicaid on your state insurance portal or at healthcare.gov. If your state expanded Medicaid, it should be easy to apply and any assets you own (home, retirement accounts, savings accounts) will not make you ineligible. Otherwise, you could buy insurance on the ACA marketplace, maybe with subsidized premiums


    Oh yeah and you are supposed to be out of work or expected to be out of work for 12 months to be considered disabled. Do you have any state disability coverage or temporary disability coverage through your job? If so, you can take that first while you are applying for SSD

  • bookgal
    bookgal Member Posts: 20
    edited November 2022
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    Thank you. Olma61 for sharing your knowledge! ( I finally figured out how to save this thread so I can find it again :) I have no disability insurance through my job and could not buy any until so many years after my diagnosis... I did not make it that long. Never thought about this kind of insurance before diagnosis since I was still in my thirties.

    My state does have expanded Medicaid. I am not exactly sure what that would cover. I understand that Medicaid may not cover some treatment options and testing and ACA plans may be what I have to consider as well. Thank you also for mentioning Legal Aid. I would have never though of them for anything other than civil/criminal type issues. I'll qualify once I stop working.

    I am still confused about how long after approval one actually gets payments. I've seen 5 months and I have seen the following month after approval . I wonder if you can work part time (under the dollar amount allowed) and still be awarded disability. Some money is better than none, right? So many questions. I appreciate your thoughtful answer. It surely helps to ease my mind. Thank you!

  • olma61
    olma61 Member Posts: 1,022
    edited November 2022
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    I can’t answer the how long question because I was already drawing my SS retirement checks when I requested disability (because the disability benefit rate was higher for me). And I was eligible retroactively since I had already been unable to work for longer than a year.

    Some sources say if our disability is covered by the compassionate allowance, the five month waiting period is waived. But it can still take time for SS to process the paperwork. All I can say is, in my case, it was almost immediately after I sent back the paperwork I received from Disability Determinations. I got a lump sum retro benefit in my bank account within a couple of weeks.

    Medicaid can be pretty good in states like New York, NJ and California, it does depend on your state, though

  • mkestrel
    mkestrel Member Posts: 156
    edited November 2022
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    Hi, sounds like I'm in the same boat as you bookgal. I have been on intermittent FMLA leave most of this year trying to keep working FT to keep my health insurance but I'm having trouble with fatigue, can't concentrate and it hurts to sit all day, can't stand long either. I was just in the hospital for PE. I'm just done. I want to apply for disability but I don't understand all the jump through hoops government doublespeak. Why should we have to wait five months to get our own money back? They certainly don't give us that long on taxes... How are we supposed to pay bills and buy new high deductible insurance for two years? My husband can't carry it all and his insurance is way too high. We're going to talk to some people.

  • bookgal
    bookgal Member Posts: 20
    edited November 2022
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    Olma61- Thank you for this information! That makes sense and is a bit of a relief. You have been so helpful. I have a better idea now of what questions to ask/research. I appreciate it. I am in my 40s and have had quite a bit to learn. The next will be to learn how to update my dx info in my signature here. Each time I think I have done it, it disappears. LOL! Thanks again!

  • bookgal
    bookgal Member Posts: 20
    edited November 2022
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    mkestral- This is not a fun boat to be in , right? There's no drinks with little umbrellas or musical entertainment.

    I understand , it is all bit overwhelming. I didn't know who or where to ask the many questions going through my head. I don't think FMLA would help me keep my employers health insurance or strech out my employment, but I don't really understand that much about it so thank you for mentioning that!. I can relate to the pain sitting and standing and fatigue. PE is serious . I sure hope you are feeling better! I have pleural effusions and recent skin progression that makes getting & staying dressed a challenge. It may be that we can possibly get SS payments the month following the award if we are "compassionate allowance". Olma referenced that info! Five months is a long time for anyone with a disability to wait!

    Having to figure all of this information out is tiring all by itself. Good luck, with your search. I'll share anything that I discover too!

  • Kikomoon
    Kikomoon Member Posts: 358
    edited November 2022
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    Bookgal,

    I applied on August 25th and was approved October 18th. My first payment is for November but I will not get it until the end of December. The progress bar on the SSDI website said “most claims get processed in x amount of days" and the number was over 200 days and was quite alarming. The progress bar went from “16% completed review" to “approved" seemed like overnight.For what it worth that is my very recent experiemce

  • mkestrel
    mkestrel Member Posts: 156
    edited January 2023
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    Well for an update I decided the PE was a sign to change something or else, so I quit the sweatshop and applied for SSD online. I dropped off some records and was called the next day. Now waiting... It was good timing at the end of the year and my husband's insurance is not as bad as I thought. The delay is ridiculous. It's like they're hoping I die first so they won't have to pay anything. We lazy serfs are supposed to keep working and pay those taxes until we die at our desks! Too bad, last scans stable and I already feel better with more time and energy for other things like spending time with my family. Finances will be tight though.

  • kbl
    kbl Member Posts: 2,731
    edited January 2023
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    mkestral, good for you. I hope the approval happens quickly. I had the approval in one week, then had to wait the six months to get the first payment. Had two years before Medicare kicked in, and it’s not been too bad, although I’m only paying $15 a month for Xeloda and not thousands for the other medications.

  • nola70115
    nola70115 Member Posts: 61
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    Hi - I submitted the SSDI form online but I have to send or take in my medical records. How much do they want? I was diagnosed stage 4 over two years ago and there are hundreds of pages of test results and appointment records in my patient portal. I can't imagine they really want to see the results of monthly blood tests. Why do I even need to send it medical records when I signed a release for them to get the same thing from the hospital?

  • olma61
    olma61 Member Posts: 1,022
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    I can’t say, I was not asked to give them my medical records, just a few pages I had to answer questions from the SS office. I assume they contacted the oncologist for my medical records.

  • vlnrph
    vlnrph Member Posts: 490
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    Hi nola! It’s been a few years but, after submitting the online form, I recall printing then walking a couple pages of a recent visit summary in to my local SS office. In your patient portal, where notes from providers are available, select a section that includes your date of diagnosis. I don’t think they need (or want) tons of lab results either. I was approved in 10 days.

  • mkestrel
    mkestrel Member Posts: 156
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    I gave them the pathology report, surgery reports, and some oncology and imaging records. They drug their feet at first but when it went to medical review it was approved a few days later and they didn't ask for more records.