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How Many Stage 4 Girls are getting SS disability..

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  • artistatheart
    artistatheart Member Posts: 1,437
    edited June 2016
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    Thanks Stephanie, I do need to look into alternate policies for my girls and DH. It is just the reality of life now. I think we have both been dragging our feet, as before this Dx we were just doing so well financially, with a fairly rosy future ahead. Suddenly someone is not so slowly pulling the carpet out from under us and we are trying to hang on for dear life. A bitter pill to swallow..... as you so eloquently illustrate with your own experience, running through your hard earned retirement ect. I have such guilt over my husband losing everything with me and this stupid disease. I know that is life. However, my irrational self can't help thinking he will resent me eventually. Irrational because he is the biggest hearted, unselfish person I ever met. It helps to know they eliminated that financial limit so we can maintain some semblance of our former life. Downsizing our home will help tremendously. With all the help and advice I am feeling like I can forge ahead and just get it done one slice at a time. Time to accept the changes, recognize the positives and reap the benefits of my improved life! Cheers!

  • incognitomom
    incognitomom Member Posts: 80
    edited June 2016
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    Hi!

    I have not caught up on the entire thread, but I went on SSI when diagnosed as Stage IV when unemployed. I found a job and worked until last week, when I was laid off (due to my disability, I'm sure) and I'm back on disability. Knock on wood, but it was an easy process for me. The insurance has not been easy at all. I was sent a Medicare/aid? card last month and I didn't know why, but now I found out it was because it was two years since I was disabled. My work insurance goes to the end of the month so I'm very thankful for it.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited June 2016
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    Hi Harry's Mom,

    Good to meet you.

    re. your new card - it will say right on it whether you it's Medicare or Medicaid. You're probably eligible for both programs. If so, your insurance coverage will be "Medicare primary, Medicaid secondary". It's important to say this when booking medical appointments as some practitioners don't take Medicaid patients, but do take Medicare patients...they like getting paid more $.

    Be sure to confirm your enrollment in both programs. Otherwise the Medicare premium, deductible, co-pays and drug costs can be hefty with a disability like MBC. And you'll want to be sure your other family member(s) have adequate medical insurance too.

    Congratulations on your smooth transition back to SSI from your trial time at work. It's not always easy to go off and on these programs, since the ability to work and earn money can be seen as the ability to keep on working and earning money.

    I wish you an extended period of ease, Harry's mom.

    warmest healing wishes, Stephanie

  • indenial
    indenial Member Posts: 125
    edited June 2016
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    So I just applied for and received SSDI... On the plus side, it was so easy, I just filled out the online form and the work history papers and they did the rest. I didn't even talk to my doctors about it or gather test results. And I haven't worked full time in 4 years so there was no stress over stopping work.

    What I'm really concerned about though is health insurance! Just before SSDI was approved I randomly got a Medicaid card the mail but then when I called, the state marketplace told me it was a system error and I wasn't eligible. Now I'm wondering if that was related to my disability claim. My husband works and on his income we are "low income" but once we add in SSDI, we aren't low income anymore. Which is great, except now my son and I don't qualify for Medicaid or subsidized deductibles etc! I'm going to end up spending the entire SSDI check on medical costs! Was this a big mistake?? The only reason I applied for SSDI after so long not working was because I found out my family would not get survivor benefits unless I had a recent work history or SSDI. Sigh. I don't understand this system.

  • Tee510
    Tee510 Member Posts: 10
    edited June 2016
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    Indenial, I'm worried about this myself and confused on how the system works. I go to a university clinic for my cancer care because I had no insurance. The university clinic has helped me apply for Medicaid since February which is still pending at this time. In the meantime I decided last week to apply for disability because I haven't worked since my stage 4 diagnosis and I don't plan on working anymore.. The more I think about it the more I wonder if that was the right thing to do. I applied for disability because whatever time I have left I want to spend it with my family and not at work and besides I'm tired of being broke and trying to keep up with the bills. If I do get disability will I loose the chance of getting medicaid? I would have to use my whole disability check to buy insurance? It wouldn't serve the purpose unless there's something I'm missing.

  • pwilmarth
    pwilmarth Member Posts: 138
    edited June 2016
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    Stay out of the Marketplace. Call the entity that handles Medicaid applications for your state. They will ask you a few questions over the phone and let you know if you qualify for Medicaid.

    The Marketplace is an entity designed to sell you insurance coverage from licensed agents. They want the commission for selling you an insurance policy. That doesn't necessarily mean they are looking out for your best interests.

    In Colorado, they call it Connect For Health Colorado. So you will have to investigate what this is for you state. It's a 1-800# and the people who process the application aren't even in your state. They just complete the application with you over the phone.

  • divinemrsm
    divinemrsm Member Posts: 6,202
    edited June 2016
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    The disability issues really can get confusing.

    For myself, I continued working my part time job for four years after the stage iv diagnosis. Then I stopped working. I filed for disability, and like many of you, I did it online, and was approved within a month or two. That part was pretty painless.

    The problem: I worked at a school, so I had to apply separately to the school retirement system to be eligible to get a disability check. I never made much money in my life (I am married and husband is the main wage earner.) If approved, I would get less than five hundred dollars a month. Still, that is money that should go to me and it all helps. I had more paperwork to fill out and then a school retirement system doctor I had to see. I cannot begin to tell you how bizarre that appointment went.

    I was told I would receive the decision if I was eligible within "two or four...or six weeks" (yes, that's how the office worker said it.) a The doctor writes a report and some board has to review all my paperworkand vote or something to that effect.

    Of course, it has been 5 1/2 weeks since the doctor appt, and I've heard nothing. I will wait till next week and call. I've read online that it's almost never approved and I worry that I will have to fight it. What a royal pain and stressful, too. I filed with the school retirement in February. Nothing like dragging this thing out as long as possible

  • indenial
    indenial Member Posts: 125
    edited June 2016
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    As far as I can tell, unless you get employer-sponsored insurance, you HAVE to use the marketplace to get insurance in my state - even for Medicaid. I don't think I'm eligible for Medicaid since the SSDI will push us just over the income limits, unless they have separate limits for those on disability?

  • pwilmarth
    pwilmarth Member Posts: 138
    edited June 2016
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    Here's how it worked for me:

    I spoke to a representative for Connect For Health Colorado. They asked me three questions:

    Is any one in your house disabled? You are.

    Are you currently working? If so, how often do you get paid and how much money do you make. My state limits the amount of money I can make to $1300/month as a single person. It's higher for families.

    There may be a few other questions they ask because they are trying to determine if you need home-based services (usually someone who comes into the home to help with personal care needs or housekeeping) or if you intend to enter a long-term care facility in the next 30 days. Community based Medicaid is a different program than long-term care.

    Medicaid really is handled at the county level. Every county has a Human Services department that handles Medicaid applications. In my county, you can fill out the application online or you can walk into the county office and use one of their computers to fill out the application. Eventually you end up at the county office because you have to provide evidence of citizenship and a Social Security Number.

    The way you get pushed into the marketplace is if your insurance changes due to a change in employment. If you stopped working because of a disability, then you have had a qualifying event. The problem with the marketplace is they want to ask you about your taxable income, which is how they determine what insurance to purchase.

    But, if you are disabled, you can just apply for Medicaid. If you aren't working, you have no taxable income. At the time that I went through the process, I did have taxable income for 2015, but the state Medicaid program didn't care about that. They only wanted to know about my current situation.

    It's not unusual for one member of the family to receive Medicaid.

    So, if you can find the entity that handles Medicaid applications over the phone, you should start there. Otherwise, visit your local county Human Services department. But don't try to call that office. Typically, you won't get a return phone call and the system is much more efficient online.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited June 2016
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    Thanks pwilmarth, You are always full of great information that has been very helpful to us all....

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited August 2016
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    Bumping this for a member

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited October 2016
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    Bumping for liver mets members.

    Best, Stephanie


  • Lita57
    Lita57 Member Posts: 2,338
    edited October 2016
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    I filed a couple of months after dx. It is supposed to kick in in Nov. They make you wait 5 mos before you get the first check. It was easy on line. I can't work because of pain and extensive Mets.

    Lita

  • Kattysmith
    Kattysmith Member Posts: 688
    edited October 2016
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    I'm in Texas. I filed for SSI right after I got laid off last October 2015. I didn't realize that I should have filed for disability. I was just in shock from having been diagnosed and getting laid off from my job of almost 15 years all in the same week at age 63 (then). I reconnected with an old friend who is also Stage 4 this summer, and she told me to file for SS Disability. I did and got it approved in 5 weeks. They immediately sent me a check covering what I would have been receiving under disability for the past several months. That was a minor miracle, and I was astonished that it happened so quickly.

    I do earn a little money selling vintage books and magazines on eBay, but as long as I don't make over $750 per month (oh, I wish...I'm lucky if it's $75.00), it doesn't endanger my benefits.

  • Sattipearl
    Sattipearl Member Posts: 84
    edited October 2016
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    Lita,

    I went on CA state disability on 9/1/16, and received a check on 9/15 for 5 days. There's a 7 day waiting period so nothing from 9/1-9/8. I get a check every 2 weeks for 55% of my base salary. My employer also carries short and long term disability and I should get my first check for the ST soon, LT kicks in in 90 days.

    I also heard that Stage IV dx cuts the 5 month SSDI wait down to nearly nothing. Check with a counselor at SS for info. They are supposed to help you.

    I checked with my accounted who helped me get the info I needed.

    Since I'm on state disability, my employer is also picking up my health insurance.

    I feel very fortunate for the support...my HR director also gave me some tips

    Patti

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited October 2016
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    Hi Patti,

    I think you were misinformed about the no wait period for SSDI award for folks with MBC. If you know different, please provide those resources. The sources I check are all in agreement.

    Though our applications are fast tracked through the Social Security Administration's Compassionate Allowances Initiative, our income doesn't start until after the mandated wait period:

    For instance, the five-month waiting period for SSDI claims is not waived by having a compassionate allowance. The waiting period is established by federal law and cannot be reversed by SSA's compassionate allowance initiative. http://www.disabilitysecrets.com/five-month-waitin...

    For those without short or long term disability coverage through work (or accumulated sick & vacation pay) or a state disability program (availability varies by state), the wait time can be daunting!

    The five months wait for income is actually six months as you don't get paid until the first of the month - for the previous month!

    For instance, I'm at end-of-life and if I die before month's end, no payment on the first of the following month. No pro-rating or adjustments to the income. Yes, there are still rent and bills to be paid for the coming month, but tough luck!

    Many people die before receiving SSDI income. And, there's another 24 month wait period for Medicare coverage for those receiving SSDI - many more die without getting Medicare coverage, so check with COBRA before quitting your job (get that extension) and use the ACA mandated programs (availability varies by state)

    The SSI program for those with very low income and resources is a different story, but if you've worked for properly recorded pay and hours, then SSDI rules will govern the day.

    People who have disabled family members who've never worked or only in sheltered workshops will often confuse the SSDI and SSI programs.

    It's good to consult financial, legal, estate planning and/or disability advocates when filing for SSDI.

    If you have limited resources, here's one for you: http://www.ilru.org/projects/cil-net/cil-center-an...

    Financial bleeding can be every bit as life-threatening as MBC - for the patient and her/his survivors!

    Lots to untangle and my best non-professional advice is to prepare, prepare, prepare!

    good healing regards for all, Stephanie

    PS, Disability Protective Filing Date information

    PSS, those with unreported earnings, working for many school and government organizations, homemakers and those with inadequate savings to tide them over all have different and special needs. Prepare and consult!

  • CatFromFL
    CatFromFL Member Posts: 18
    edited November 2016
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    I just want to tell of my experience with regular Social Security Disability.


    I last worked Sept 27th 2016.

    I applied "On line" Oct 8th, and followed up at the local SS office a week later. They asked all the usual info. I am 64 and currently on Short term disability provided by my employer. I have worked since my early twenties, so I knew I would qualify for that work history part. The lady was very nice and advised me that I would be "fast tracked" due to my diagnosis. She also said my Stage 4 diagnosis was a qualifying one.

    A few weeks later I got a form about what physical things I could and couldn't do. A few days later I got one asking pain related questions. I answered each and returned them promptly.

    Today,Nov 18th,I got a letter approving me to receive benefits once I hit the five month waiting period.which will be March, paid out in mid April. I will also get a Medicare card in the mail soon. The amount they awarded was the 100% amount I would get if I worked up until I was 66.

    I am relieved that it was easy and painless.

    Cat


  • Bonski68
    Bonski68 Member Posts: 18
    edited November 2016
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    I used a lawyer to help me with my disability claim. To my surprise, I was approved in less than a month and started receiving benefits right away, including a check for backpay to when I initially diagnosed with stage2 cancer.

    Has anyone gone through the renewal process...mines up in March. What should I expect

  • LuAnnH
    LuAnnH Member Posts: 348
    edited November 2016
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    When I applied in 2007 MBC is automatic approval for SSDI, so you should not need to pay for a lawyer to get your claim approved.  If you do have difficulty www.patientadvocate.org will help you get your claim approved.

    I also get a private LTD claim with the company I worked for at the time, they deduct from my check the amount SSDI pays me.  For example if SSDI calculates I am entitled to 1,000 per month and the private LTD determines I get 2,000 per month then I would only receive 2,000 per month only.  SSDI will pay 1,000 and LTD will pay 1,000.

    When on SSDI you can work and earn up to approximately 1,000 per month (I think) and they will not reduce your benefits.  If you receive money from a private LTD like me then you need to check out their policies.  I cannot earn any money, if I took a part time job for a few extra dollars I would have to pay back the private LTD any cash I would earn.  Sucks for me but at least it is more than just SSDI.

    One important thing someone told me when I applied is more is better!  List every doctor you see no matter how minor the problem.  Although we should already be approved the extra problems makes it easier for them to give you a quick yes.  I think I am up to about 7 doctors that I see and even list my primary for depression since I am on anti depressants.

    I have had my claim reviewed 2 or 3 times since I have been on SSDI and the claim was always quick and painless.  I list everything, just like recently my feet surgery.  All these things can be side effects of the drugs we take so there is no reason not to list everything.  I personally am concerned about entitlements being cut when the new president comes in but I just keep track of everyone I see and what for so that I do not run into any trouble.

  • Proparent
    Proparent Member Posts: 14
    edited December 2016
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    Well it happened. I started getting my SSDI checks and it raised my income level enough to get me kicked off my health insurance. Now I'm in a scramble to try and find something before Jan 31 when my coverage ends. What a double edged sword. I was so grateful to find I qualified, only to find out it causes me to lose my insurance.

  • pinkninja9560
    pinkninja9560 Member Posts: 178
    edited February 2017
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    I just had a recurrence and now have mets to both lungs, both kidneys, liver, bones and adrenals. I had no idea we could get this! I'm going to apply tomorrow. I wonder if I would qualify for backdating it. I was diagnosed stage 2 in 2014, went thru dmx, Chemo and 4 more reconstructive surgeries

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2017
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    You qualify from the date you were diagnosed stage 4.

    Good luck!

  • Lumpie
    Lumpie Member Posts: 1,553
    edited September 2017
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    I realize that this thread has some age on it, but this is such an important topic for Stage IV's. There is a wealth of information here. Thank you to all who have shared insights and links. The one to the CMS site about COBRA continuation was particularly helpful. I was really scared about what I was going to do for insurance coverage if I became unable to work but I were not eligible for Medicare yet.

    Question: Is anyone applying for SSDI while still working? I am still trying to figure it all out. I am still working. I think that I am capable of working at least part time while on Tx if my employer will let me. Ironically, I think that my income might be higher... or at least no lower... on SSDI. I gather that I could work at least a few hours on SSDI. Thing is, I want enough time for Tx and rest and recuperation, but I don't want to turn into a recluse. I flatter myself into thinking that my work is useful ;) Can anyone share insight on.... how did you make decisions around work vs. disability insurance coverage (either SSDI/SSI or private coverage)? Has anyone been well enough health-wise to try the SS "Trial of Work" return-to-work program? If so, how did htat go? Thanks for sharing.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited September 2017
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    Lumpy, I am trying to get this all lined up too but there is just so much to consider. Cobra cost is exorbitant! If I don't qualify for Medicare for two years I am not sure what I would do interim?? I can't do my job anymore I am fairly certain. I am using up my sick right now but it will run out soon. Going on SSDI I would get about half of my current salary plus have to pay for Cobra!!! I am sooooo stressed about all of this.

    I think you (and I) should apply now as it takes 5 months to kick in after you apply. I think you can make up to $700 while on SSDI. Do they consider just my income or my DH's too?


  • Groovywilma
    Groovywilma Member Posts: 47
    edited September 2017
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    Me too. This is a tough subject. I was on a leave of absence from work for almost 5 months earlier this year. I went back a few weeks ago, but recent scans show progression, so I'm going out again (plus my boss was extremely unhelpful, unpleasant, and stressful upon my return). I'm going to apply for SSDI soon. When I was on the LOA I was getting state disability. I will apply again when I leave work after this week. But the cost of Cobra ($$$ ugh!) and the limited amount of SSDI is pretty stressful. In addition to waiting on Medicare! I did contact a resource: The Disability Help Center, which helped answer some questions for me. You can look it up on-line and maybe call an office near you? I'll share whatever info I learn along the way. Good luck!

  • grrifff
    grrifff Member Posts: 75
    edited September 2017
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    I went to the SS office yesterday and was denied. Apparently I hadn't paid in enough five out of the last ten years. I was busy raising three children. That was for disability. SSI also denied because I have more than $1,500 in a bank account. I reiterated that I was Stage IV the woman said "IF you can prove it" I was so mad I asked to speak to a supervisor but got turned down for that too. I know people who are on disability for less. Stopped waitressing a month ago, 6+ hours on my feet until 10:00 at night was a lot.

  • Groovywilma
    Groovywilma Member Posts: 47
    edited September 2017
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    Oh no Grrifff! That's awful! Will you qualify for SSI if you spend down your savings to below $1500? It's hard enough dealing with metastatic breast cancer, and then having to deal with this too. I hope you find some better options. They need to train their staff to be a little more compassionate at the SS office!

  • artistatheart
    artistatheart Member Posts: 1,437
    edited September 2017
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    I find it appalling the they think you don't need any kind of emergency cushion in the bank. I paid into that and practiced responsible behavior by putting some money away. Money that we built up in equity then sold our house for a cheaper one so we would have a cushion. It won't last long at all when I have to quit and give up my benefits. Then what? Lose our house, get no treatment? Life is just throwing "F" bombs lately.

  • margaritams
    margaritams Member Posts: 183
    edited September 2017
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    Hi all. Since you are talking about SSDI and health insurance etc. I hope you don't mind if I jump in with a question. I'm about to start on Medicare in October. I was diagnosed in April 2015 and have gone through the hoops that some of you are currently going through... I did short-term disability, then onto long-term disability which required that I apply for SSDI. I was approved in early 2016 but the date of disability was back to my stage 4 diagnosis date in April 2015. My job terminated me as soon as I applied to go on long-term disability (and no, no one told me that would happen) so I felt my best choice was COBRA (and yes, it is crazy expensive!). I did that for the entire period and then had to push and cajole in order to get the COBRA extension (to go beyond 18 months - even more expensive btw). Miraculously, I thought, Medicare just automatically sent my card to me in advance of October. I was already thinking about supplemental "medigap" insurance but had thought perhaps I could continue my COBRA for another month while i sorted it all out with COBRA taking over as the secondary and Medicare as the primary. Well, just two days ago, my private insurance wrote to tell me that due to Medicare eligibility, I am terminated from my plan as of October 1.

    I'm editing this to answer my own question in case anyone is following along at home. My questions had related to Supplemental health insurance plans or "Medigap" plans as they are called and the timing and choices involved. I was freaking out that they would have a lag time until they became effective but that's not necessarily so. I found that the best way to answer my questions was to call the company that administers the plans available in my area. I kid you not, I spent 1 hour and 38 minutes on the phone with a very knowledgeable supervisor (I suggest you ask immediately to speak to one since they know more what's going on) and ended up enrolling then and there in a Part D prescription drug plan and a supplemental medical at the same time. They said they would be effective on the same day that my Medicare Parts A&B kick in (in 2 days!). And compared to the prices that I've been paying for COBRA, the premiums are not that bad. We'll see how this goes.

    And, if I can help at all with the Short- or Long-term disability, SSDI questions I am happy to share what I know.

    Margarita

  • scoobie
    scoobie Member Posts: 11
    edited October 2017
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    I'm hoping one of you super knowledgable people can help me out. I will become automatically eligible for Medicare in December following two years on SSDI. I would like to continue with my existing health insurance plan (as secondary), at least for a period, to cover Medicare copays (20%) and prescription drugs. This may not be the cheapest option, but my existing insurance is a grandfathered individual PPO that has covered five years of treatment at MD Anderson without question and is irreplaceable at any cost, so you can understand my unwillingness to give it up. Is there any reason I cannot keep my existing plan and start on Medicare?