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How Many Stage 4 Girls are getting SS disability..

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  • emac877
    emac877 Member Posts: 675
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    I'm reading through this thread and really wish I had done it earlier. I've been out on short term disability with work and it has now pivoted into long term disability. I got a letter yesterday stating I must apply for SSDI. I was under the impression I couldn't be on SSDI and be employed by my employer but I need to stay listed as employed to keep my medical benefits and be on my LTD with them which I can keep until I'm eligible for Medicare. Right now they are just asking for proof of application or a letter of acceptance or denial by the end of October so I am going to fill out the online application. I had no idea you could receive LTD benefits and SSDI. I would not be able to pay my bills on SSDI alone so I will need both. This process is a little overwhelming so I am happy to find helpful info here.

  • chicagoan
    chicagoan Member Posts: 963
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    Emac-I got to keep my LT disability benefits until age 65 but they deducted my Social Security benefit from the amount I received. Good luck with your application.

  • margaritams
    margaritams Member Posts: 183
    edited September 2023
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    Emac877, you're right. It is very confusing. I think lots depends on your state law. My LTD is still provided by my last employer but once I exhausted STD and went onto LTD, my employment and the employer sponsored health insurance ended (that was several years ago now). My option at that point was to stay on the same insurance by paying for it under COBRA or to find other insurance such as through the marketplace (ie: Obamacare). Normally, COBRA is only 18 months but it can be extended in the case of disability (be advised that you must formally request the extension, it is not automatic even though you are disabled). The COBRA extension ensures that you can remain on the same medical coverage until you are eligible for medicare which, if I remember correctly, happens after 2 years of disability (as determined by SSDI). Be advised, however, that COBRA is very expensive as they are allowed to charge something like 150% of the policy cost to cover admin or some such BS.

    As I understand it, nearly all LTD insurers require you to apply for SSDI and you need to apply for SSDI in order to become eligible for medicare due to disability prior to turning 65. Assuming you are approved, they will reduce the LTD payment by the exact amount of SSDI you receive so you are ultimately receiving the same amount but SSDI pays a portion and the LTD insurer pays the remainder. One thing I did right from the beginning as to ask my employer for a copy of their entire policy agreement with the LTD insurance company - that way I could see exactly what my rights and their obligations were. Good luck navigating it - you can do it!

  • lanne2389
    lanne2389 Member Posts: 220
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    Thought I’d share my disability experience in case it’s helpful to anyone. I live in Oregon.

    Instead of applying online, I ended up making an appt for my local Soc Sec office to call me about applying for disability. The agent was super nice and asked me all the questions and recorded my answers. Instead of sending medical records, I was sent a release form that allowed Soc Sec to obtain records directly from my Dr. I was also sent a questionnaire from the Oregon Dept of Human Services (who handles disability applications for Soc Sec). I described everything I could think of about how MBC and my treatment affects me - big and small. Received notice of approval in 6 or 7 weeks. I thought disability would be paid from my application date but then about 2 months later I received a lump sum check for disability payments dating back to my initial MBC diagnosis - a needed and nice surprise.

    I’ll receive disability benefits until I reach full retirement age, and then disability payments will end and I’ll automatically be switched to receiving Soc Sec retirement benefits.

    if you’re eligible for Soc Sec retirement benefits i.e. you’re at least 62 - but have NOT yet reached FULL retirement age, and haven’t yet applied for retirement benefits when you apply for disability benefits, you might be asked if you want to apply for retirement benefits while you wait for a disability decision. If you can wait, you might not want to take retirement payments then because after you do reach full retirement age and disability payments automatically switch to full retirement benefits, your retirement benefit amount might be determined by the age you were when you first took it (a lower amount), and not the full retirement age amount you’d receive when disability payments switch to retirement payments. (Hope that all makes sense). Disability payments = the amount you’ll get from Soc Sec when you reach full retirement age.

    Take care,

    Lanne

  • cookie54
    cookie54 Member Posts: 662
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    Hey ladies Just in case this helps I live in NJ and I went the STD, LTD and I am on SSDI currently. I have been on COBRA from my last job and recently had it extended past my 18 months. The extension process was pretty easy I just had to send my disability letter of benefits to the company who manages my COBRA. Anyhow I really am glad because I did not want to shop for insurance to bridge me over to the 2 year mark for Medicare. I am 57 so I'm hoping the process to Medicare isn't too bad. However I did read something about some companies not willing to offer the Medigap or charging high prices to people under the medicare age. We'll see how it goes I did read on here somewhere there is a local government agency called S.H.I.P that can help with the Medicare process. I really would like to sit down in person with a non biased person to help. Also my monthly premium actually stayed the same. I was worried when I also read about the 150% possibility.

    I'm open to any good tips bridging over to Medicare. Best wishes navigating the insurance waters.

  • emac877
    emac877 Member Posts: 675
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    Lanne - I am in Oregon also and was planning to start the process online. Your experience is very helpful. I think I have everything together that they might need.

    I am going the LTD route also and am still figuring out the medical insurance part. I am still listed as employed so I need to talk to my HR department and find out how that works with my medical insurance and employer. The policy says I can keep my LTD until I'm 65 or eligible for Medicare and I need to find out if that means I can stay on the record as employed and keep my medical benefits. That seems unlikely to me. I have the LTD policy downloaded on my computer but I haven't run across that info.

  • seeq
    seeq Member Posts: 1,084
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    Emac - I can't address the STD/LTD issues, but I applied completely online. I also submitted my medical records and imaging (also online), because I thought it would be faster. I think you can be approved for disability and not be authorized for SSDI payments if you make too much money (which is not much money), but you should verify that. I applied during the pandemic, so everything was online and by phone. My local SS agent(?) was very helpful. Also, your request should be expedited under Compassionate Care.

  • chicagoan
    chicagoan Member Posts: 963
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    Emac-My company paid for a consultant to help me apply. Of course they wanted to get me on SSI asap so they didn't have to pay as much. Check with your HR to see if they have someone who could help.

  • emac877
    emac877 Member Posts: 675
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    I applied online and because of the MBC diagnosis I was also required to call and then go over the whole thing with an agent on the phone so that took a while and seemed redundant. They do expedite the application and the next day I got a call from a local agent who verified some things over the phone and now my application is up in Salem for medical decision making. I can be on SSDI and LTD. The insurance company managing the LTD looks at SSDI as a benefit that I am eligible for that reduces the amount they have to pay but they are still paying the benefit and my employment status is separate from both I guess.

  • sf-cakes
    sf-cakes Member Posts: 524
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    I'm grateful for this thread, as I'll be starting this process in the new year.

    My employer told me that once I run out of paid leave, then my employer covered medical benefits will stop. I have enough paid leave to remain on short-term disability (state disability pays most of my income, employer makes up the rest) until a bit past the new year, then I will switch over to my long-term disability plan (60% of my income, and they require filing for SSDI) and COBRA payments for my health plan. Until medicare kicks in two years later.

    Everyone has encouraged me to wait until the short term runs out, so I don't have to start paying for medical benefits sooner than I need to. Once those run out, then I will officially separate from my job.

  • olma61
    olma61 Member Posts: 1,016
    edited October 2023
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    The best suggestion about Medicare I can make for a Stage IV patient is to opt for the Medicare Supplement (a PLAN G, preferably) and not one of the Medicare Advantage programs because Medicare Advantage is only obligated to pay for 80% of your cancer care. I sure would not want to be stuck with 20% of my medical bills.

    The glitch in that matrix is that some states will ONLY have Advantage plans on offer if you are under 65 on SSDI, so you do need to get advice that is specific to your state.

  • olma61
    olma61 Member Posts: 1,016
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    I wanted to be sure before I posted this, but I did not think my SSDI benefit would change to a reduced SS retirement benefit when I reach full retirement age and this article on AARP confirms it.

    I started retirement at age 62 and claimed disability a couple of years later so I went from a reduced benefit to an increased SSDI benefit and it looks like that will not change -

    https://www.aarp.org/retirement/social-security/questions-answers/disability-benefits-retirement-age/

  • kbl
    kbl Member Posts: 2,682
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    Olma61, I will have the chance to switch to a supplement once I turn 65, but for someone under 65, it’s a lot more expensive, making the advantage plan a better choice for me.

  • recoveringbelle
    recoveringbelle Member Posts: 22
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    I understand that the NC contingent of Komen went to the Hill in September to advocate for swifter approval for MBC patients, as the process has been increasingly delayed. NC's SSDI today is notorious for being one of the most understaffed—and poorly staffed—unit in the country. I have no doubt they're denying MBC patients or else delaying the process so long that they've expired (in part from the stress of dealing w/ the most Kafkaesque bureaucracy in the country) well before any decision has been made.

  • olma61
    olma61 Member Posts: 1,016
    edited October 2023
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    Yes, some Congresspeople have been introducing this bill every year for the past few years, and it never goes anywhere. So frustrating! No disabled person should have to wait 2 years for Medicare, although it is a bit more urgent for those of us with terminal illness.

    https://www.murphy.senate.gov/newsroom/press-releases/murphy-ernst-reintroduce-bill-to-give-metastatic-breast-cancer-patients-a-fighting-chanc#:~:text=The%20Metastatic%20Breast%20Cancer%20Access,Y.

    I was happy to see that Komen was helping to lobby for it, they do do a few good things, even though they are seen as pink washers by some. They give a $750 grant that is pretty easy to apply for, to help with expenses for BC patients. The info is on their site. I must give them credit where credit is due.

  • olma61
    olma61 Member Posts: 1,016
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    @kbl yes, the insurance that might be available and what % is covered is very state-specific.

    I stayed on my exchange plan and didn’t apply for SSDI until a few months before I reached Medicare age so I could just get Part A&B with the supplement at a decent price.

  • candy-678
    candy-678 Member Posts: 4,086
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    This question is to see if anyone out there getting disability has the knowledge about SSD to answer this:

    My brother-in-law told me that anyone (including me) that gets Social Security Disability really is living off taxpayers. That, even though me and others, paid into Social Security while working, that we did not pay in THAT much and so most of our benefits come from the working taxpayers. He said that statistically after 7-8 years of receiving benefits, a person has gotten back what they put in, and the remainder they get is "charity".

    Is this true?? Social Security is too confusing for me to understand. I thought it was ALL that I put in over the course of my working years (for me I worked 34 years out in the workforce; not all at the same company, but my total work life).

    He made it sound like I am mooching a Government check. And he even made it sound like the Seniors that get regular Social Security were doing the same.

    Thoughts?????

  • chicagoan
    chicagoan Member Posts: 963
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    Candy,

    That is total BS! All US workers put into the Social Security system with every paycheck. Some of us are unfortunate enough to need to take disability. I am pretty sure that most of us would have preferred not to have needed to take it and not to have gotten cancer. It is not a separate bank account per person, it is a safety net. Just tune him out. He obviously has issues. Is he going to decline to accept Social Security and Medicare after he retires because it would be mooching?

  • threetree
    threetree Member Posts: 1,271
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    I'm not getting SS disability, but the work I've done over the last many years had informed me a little bit about SSDI. Your brother-in-law is "sort of" right, but so what, you've earned it anyway you look at it. While we do pay in all our working years, it is my understanding that for most of us it isn't enough, and we do then get additional from "taxpayer money". However, what gets taken out of our checks also gets invested by the SS system and grows over time. Just how much winds up being what you actually put in vs what grew from investment and then again what is added from "taxpayer money" I don't know, but I certainly don't think there is anything wrong with taking it. We all chip in over the years for ourselves and our fellow citizens. When we retire or need to take SSDI early, it is there for us, it is our right as a citizen, and no one should feel shame or that they've been "mooching" of the taxpayer. Those other taxpayers are probably getting some sort of "freebie" also from everything you and the rest of us put in over the years too. So what? We're all in this together, we all contribute, and we all reap the benefits of our collective contributions. It's my understanding that retirement systems work this way too, i.e. that within a few years after you retire, you have actually used up what you contributed each month. What you continue to receive is a combination of what the retirement fund made on investments and others' contributions. No one seems to have a problem with someone collecting their retirement that they paid into over the years. I don't think it's any different with Social Security and SSDI. Your brother-in-law doesn't sound like he thinks expansively or believes in lending a helping hand to others, so that in the long run he too could benefit.

  • sf-cakes
    sf-cakes Member Posts: 524
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    Good grief, does your BIL not call the fire department if his house is on fire? Or the police if there's a burglar? Does he drive on roads? Are his kids in public schools? Those are services that taxpayers foot, for the good of society. I despise the laissez-faire, trickle-down capitalist perspective that tells Americans we're only as good as our salaries from our jobs. I do NOT believe that our income is how we derive our self-worth.

  • aprilgirl1
    aprilgirl1 Member Posts: 757
    edited December 2023
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    Candy, your brother in law is a real ....piece of work. For every one of us who needs to take social security disability due to terminal cancer there is someone that never had a chance to even apply because they died . If he were to tell me that , I would ask him what is he really trying to say here ? Is he comforting a sister in law ? Is he trying to make you feel worse ? Wow. Recently, my husband has 3 work friends die suddenly at aged 61-63 of heart attacks (not all in the same company or area but in his industry). None of them received any of their soc. security . Their spouses may at some point but who knows ? One was never married so his contributions go back to the "pot" for others.

    I have not applied , yet - only because I'm still working. I have always paid in to social security when I worked (I took 15 years off to raise my kids) even as a self employed realtor. Since I am self employed I don't have employer provided long term care insurance or medical leave. Since I feel pretty good I decided to keep working while my business is still busy and I have flexibility.

    It is very likely I won't ever get the social security $ I have paid in , what happens to that money ? It goes to everyone else that needs it.

  • olma61
    olma61 Member Posts: 1,016
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    Even the supreme individualist and anti-government philosopher Ayn Rand took her Social Security and Medicare at the end of her life. She rationalized it by saying something like “the government stole this money from me and now that I am in need I am taking it back”

    She was dying of lung cancer and bills were piling up. In her hour of need, her philosophy made room for her to be “subsidized”. There are no objectivists in foxholes, apparently.

  • emac877
    emac877 Member Posts: 675
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    I think when Roosevelt set up Social Security it was never his intention for people to be considered "mooches" on the government or taxpayer. His whole purpose was for economic security for the whole of society so that those working could support those who no longer could. There's argument for mismanagement and fraud but that's true of almost every government organization in my opinion. I will start getting SSDI in February. I am on my employers long term disability plan and they required me to file for SSDI or they were going to deduct the amount I would have gotten from my long term disability payment anyway. I disagree with your BIL. I think he is coming at it from a very ablest position and I sure hope he's never disabled or finding himself on the downside of luck where his ability to make an income is compromised by poor health. I think he might find himself reconsidering his position. I wouldn't take on any guilt or shame from him.

  • sondraf
    sondraf Member Posts: 1,581
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    Ugh, January I have to figure all this out and the reciprocity agreement with the UK and what that means. There is a London office that takes phone calls a few hours on three days a week, I may just need to call and hash it out. I ran my figures through UK benefit calculators and I am eligible for a grand total of …. 0. Husband makes too much money and I/we have too much in savings. I swear the govt cost of living calculators are based on someone living in the poor North with a non-mortgaged 600 sq ft hovel with an outdoor bathroom and age 70 with family nearby to help feed and care for your final two years on this earth while you waste away on the NHS waiting lists with 100 quid in your life savings.

    Candy - ignore your BIL, trust me, if he were in the reverse situation I am sure he wouldn't be on his high and mighty morals horse and be first in line complaining about how small the payment is. Strong communities and countries come from helping to take care of everyone at a decent standard of living, although with social contracts being broken left right and center, to the point where plenty of people DO take advantage of the system, that concept seems to have been lost. Im sure he also thinks the US is headed down some commie socialist route. There but for the grace of God go he.

  • kbl
    kbl Member Posts: 2,682
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    Sondra, are you talking about a drug cost? Here it is only your guaranteed income that you count, which means money that is earned, SSDI, income from a job, things like that. If you’re not talking about help with a drug cost, please ignore this.

  • sondraf
    sondraf Member Posts: 1,581
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    kbl - no, not drug costs, its about if I am eligible for US social security disability with work credits earned through reciprocal arrangement with the UK government. Based on online calculators, the UK side of things would not pay any sort of social disability payment because we make/have too much money. This is all really messy and not something I was ever envisioning having to deal with when we moved to the UK ten years ago, but here we are.

  • kbl
    kbl Member Posts: 2,682
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    @sondraf My gosh, I’m so sorry. I have no knowledge, but it’s all so confusing and unfair.

  • sf-cakes
    sf-cakes Member Posts: 524
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    Any thoughts about applying for SSDI on-line vs in-person? There's a SSA office nearby, so I am thinking about just walking in there with my completed application in hand, and a copy of my biopsy pathology report that confirmed bone mets. But wonder if doing it directly on-line might reduce chances of mistakes? Curious what others think, if you're up for sharing about it. Thanks!

  • emac877
    emac877 Member Posts: 675
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    sf-cakes - I applied online first and the online form took me a while to fill out and at the end because I had checked that my illness is "expected to end in death" or something like that it requested that I call the SSA phone number and I had to do the whole thing over with someone on the phone. It might have been easier if I had walked into my local SSA office in hindsight. Once it was in their system the approval was fairly fast I thought.

  • cookie54
    cookie54 Member Posts: 662
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    sf-cakes I applied online and then I bundled all my reports and various progress notes and dropped off at my SS office. There was a large mailbox inside the SS office to drop off documents. As emac said I thought it was fairly quick for approval also. It was a pretty easy process and I wish the same for you.