IBC and Soc Sec Disability?
Hi All,
I was diagnosed with IBC in May 2009. Wasn't working at the time and hospital suggested I file for Soc Sec Disab. Don't know anything about how soc sec disab works, but I've been reading and it looks like inflammatory is an automatic disability status without even having to review your case. Has anyone else gone down this road with SSD and know if that is the case? THANKS!
Comments
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I was diagnosed with Inflammatory Breast Cancer back in 2004. Like a dummy I didn't even think about ss disability. I did however get insurance through the state I was living in without making a trip to dhs or anything. The hospital took care of everything. Fast forward to 2008 I was diagnosed with metastic breast cancer. I had moved and didn't have a doctor in my new state (my fault) While in the hospital the patient advocate got me in touch with social security, and was able to do the interview over the phone. They sent me papers to fill out and got verications from my doctors. This process started in October and I found out I couldn't get straight diability because I didn't have enough work credits, but I did qualify for SSI. I received my first check in December.
I know there are always ads on tv for lawyers saying they will help you get your ss disabilty. However I found the procedure painless and was taken great care of. Its not as hard as people think.(unless my case was a fluke) Since the ss adminstrations thinks I will get better (?) They will review my case in 3 years.
So just fill out the application and send it back as soon as you can. I was told usually with cancer cases you are put on "the top of the pile".
Good luck and God Bless!!
Tammy
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I received SSDI (Social Security Disability Income) in the 80's for another disease. (I was able to continue working through bc treatment so did not apply for it then.)
A few important facts ...
If you are approved, you also qualify for Medicare (if you pay the premium).
If you are approved and you have minor children, you also receive income to help with each child's expenses.
If you apply and are turned down, there are two more levels of appeal.
If you use an attorney, they are paid by Social Security and this does not reduce your benefits.
Good luck to you in your treatment,
Cinda
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Thanks for the info every one...most helpful.
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Hello,,,,, 1st DO NOT ASSUME ANYTHING! The Feds are ....well I would get bleeped! Not they're to help you.
IBC is a consideration but not a guarantee for disability. You need (not wishing this on anyone) to be stage 4. IBC is generally stage 3. Attorneys are (in my opinion not your friend) get their fee base on how long you are not accepted.
So fight for it daily! Remember the SS is a MINOR part! My Lynne gets $1200 per month, what is important is she gets her Medicare A and B next month, 24 months after being approved. Go figure?? I guess they hope most will die off!
I could publish a book.. Best wishes
Paul and Lynne
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IBC is on the list of compassionate allowances at the SS website. That means it's run through quickly and almost always approved. You do need to tell them you are unable to work.
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I'm just getting into this myself. Thanks for the info.
Flalady
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Oh wow, yes! I am so shocked at how relatively painless this was!
I applied for SS Disability in May, filled out paperwork they sent me, then had a telephone interview by a SS representative on June 15, 2009 -- and today's mail contained not only a letter from SS informing me that I was eligible for benefits ($1200/month beginning next month), but also a check for "back dated" benefits to which they also determined I was eligible. I almost fainted (from relief!).
Since the lady who did my phone interview said it would take 45 days (from the date of the interview) to determine my eligibility for benefits and I clearly told her that I had stage IV IBC and can't work on account of the fact of exhaustion so severe I spend three quarters of any given day lying on the couch, and can't do anything which requires the ability to concentrate/mentally focus for longer than 5 mins at a time (and never mind remembering anything!) -- so expected I'd likely qualify -- I wasn't expecting to hear from SS until early August! I was sweating it out because while I'm habitually frugal anyway, with no income since unemployment ran out (I lost my job to the crappy economy last year, then proceeded to get breast cancer!), the stress meter was going up (let's just say that without what I got in today's mail, or them somehow determining me not to be eligible, I wouldn't have made it much into the fall and I was starting to stress out over it).
Well ::::whew!::: what a relief!
~Lena.
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I applied for SSDI for IBC online the first week of April and was approved in two weeks. I was astonished to get a retroactive check back to six months after Dx.
I would say to definitely try for this. It has been a real assistance to our family.
Bette
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hi! I wondered about this! I felt it necessary to quit my executive position in March because the combined stress level was killing me - high BP developed during chemo and never got under control. Now that I'm not working, it's normal. I also gained lots of weight and became pre-diabetic during treatment. GP says it was all work related and supported my decision. What classifies as disabled? doing your usual job or any job? You all are giving me some hopes & an interest in talking with GP about doing the paperwork. What role did your onc's play in this? (Not sure mine would agree to the status ....)
Karen -
I work for a major online retailer. I am an account analyst and my physical presence was not really required in my office building, although I always did. When I was diagnosed my wonderful employer set me up to do my job from home. I work at my own pace...I work around all my treatments and I have since day 1. My income has continued as always and my insurance has too. Since my workplace saw I was successful at home, a new program sprang from that and now about 35 people in my facility works at home!
I only missed 1 week of work when I had my surgery and had plenty of vacation built up to cover that. Neeless to say by continuing to work and keep my income going my stress level dropped tremendously and I have been able to focus on my BC.
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While I was in chemo, etc., my CEO arranged for me to work from home, with hours that accommodated doc appts & fatigue, with my peers covering anything that required travel. However, that was just a temp arrangement (to keep me off his disability insurance, I'm sure!).
When I came out of "active" treatment, expectation was that I would resume the traveling, speaking & onsite presence required of a management consultant. Hence, the increased stress level, wieght gain, etc. I had no access to a support network when living out of a hotel in different cities, leaving home Sunday afternoons, returning home around midnight on Friday nights .... road warrior lifestyle is not kind to someone with a pendulum hanging over her head.
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I was also blessed to be able to go to work the last 3 1/2 years. I now have to quit because my right arm (I'm right handed) is four times the size of the other arm and my skin mets are really getting horrible. I just trying to figure out how to exit. I called a lawyer who specializes in SSDI and they told don't call them until I've been denied? I wanted help from the beginning so I want be denied to begin with. They don't make money this way. They make money if you are denied and than they get 25% of your six mth back pay. I c0ould not believe they would not help me with basic questions.
Flalady
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Just an open date on my original post on this thread....I am stage III IBC. Diagnosed May 2009. I was approved for SSD benefits within 3 weeks. I of course have to wait 6 months to start getting paid benefits...there standard waiting period....but unfortunately IBC is considered severe enough to be on their list of compassionate allowances and gets rushed through the system.
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I've found that Florida has the worst waiting periods in the country. Just great! Why I want to speak to a lawyer is not just to do the SSDI but all the other issues I have with short term disability, unemployment and I'm through a employee leasing company. Emp lease comp changes a whole set of rules with STD and cobra. For example if my employer cancel this company and goes back to doing payroll inside...the emp lease comp can cancel my cobra because I'm no longer a emp of theirs or my employers new company? This is to do with how they want to separate when I'm their emp and when I'm not. This emp lease comp us nationwide but I don't have FMLA because my employer is less than 50 emp.
So my issues are not just SSDI.
As for back dating...I've been told it has nothing to do with dignoses date. If you were working is is done totally by last day you were able to work. I've been stage iv for almost four years but this time will not start until I quit.
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well, I started the process. I filled out the 1st part of the online application, went to do the medical report & was told to call the SSA office. I placed the call, he asked a couple of questions and set up a phone interview for next Wednesday. We'll see how it goes. I'm still a little concerned that despite IBC (I also had IDC tumors I had forgotten about!), I worked for that year ... will examiner say "well you should be able to work" ? My onc and GP's nurse already told me they didn't think I would qualify for SSDI or LTD benefits, that I wasn't sick enough, despite the tiredness, BP, etc.
Bonnie, Ameron, do you remember what kind of questions you were asked in the interview? My appt is at 9:30 AM, which is about when I am normally just really waking up. I could have had a later appt but it would have been later in the week, and now that I have started this process, I really would like to get through it (kind of like that year of treatment - LOL)
And thanks for the encouragement!
Karen -
Hi Kwhite.....I'm not a SSD expert but this is what i know....IBC is on the "Compassionate Allowance" list and would be approved for SSD if you WERE NOT working. If you are working....you will not get benefits. I truly do not know how any one could work through dose dense AC. I am so in awe of those that have. The fatigue alone has been debilitating for me. I cannot get off the couch, cannot concentrate, am tired but cannot sleep, my brain is not firing on all cylinders and I am generally slightly depressed and miserable on AC. Since I am on the couch all day it would be nice to be able to relax and watch TV, but even that is difficult. I find my attention span is challenged to watch a half hour TV show. It could certainly be worse....I can handle just about any symptom accept the violent nausea....thank god the good meds keep that away. But I cannot imagine working.
To finish answering your question....they mostly ask about every job you have ever held. How much you lifted, squated, stretched, bended, etc. What was your longest held job. What level of education did you have. And in my case since I wasn't working, they wanted to know how my bills were getting paid. They ask about how your bills are getting paid because if you qualify for SSD you might also qualify for SSI, which is a bridge of $675/month max for low income individuals who are not working. I also am quite sure that benefits take effect 5 months after you were first "unable to work".
They also ask about what kind of symptoms you are experiencing to explain why you cannot work. I think what I said above about covers why one cannot work on AC Chemo. I am having Taxol/Herceptin next and it remains to be seen what the symptoms of that will be. But it doesn't matter since I'm already approved for SD. As long as I choose NOT to work, the SSD will continue for at least one year. My Drs. indicated they "expect me to get better" so my case will be reviewed in one year. I pray I am better (NED) in one year or less and can be back to work and a productive life.
I cannot believe your oncologist said you weren't that sick. My oncologist told me the opposite. I told him I needed to get a job...he said you will not be able to. The fatique from DD AC will likely be too much.
If you disagree with your Onc.about your ability to work, make sure you are communicating your symptoms to him so it is documented. Hope that helps. Let us know how it turns out.
Ameron
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All,
Thanks for the words of wisdom. I received my notice yesterday that SSDI was approved and that benefits will start in September, with 1st check in October. (My last day of work was April 2). It appears they will review my file in 3 years. The amount is far less than what I earned each month, but it certainly will help stretch the nest-egg.
If you have IBC and find that work is too much, do check into this!
Karen
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Hi Karen... I'm a little late in replying, but yes, I applied for SSDI, and was approved in less than 2 weeks, and you do NOT have to be stage IV to qualify, in fact it does not matter what stage you are for IBC. I applied online, and it was very simple, every little bit helps! Much Love, Jessica
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Karen, I also got approved in less than two weeks for SSDI. The online application was lengthy, but worth it. I was not stage IV at the time, but am now, and it is such a relief of my mind that I no longer have to worry about scheduling treatments around work and trying to work when I am sick from chemo. I stopped working during my DD AC.
Bette
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Just wanted all of you to know what I found out this week. As a 39 year old dx with IBC (and it being on the compassionate allowanced for SS) I didn't see the benefit of applying if I was getting short/long term disability from my employer. Just this month I switched from short term to long term disability and the gal asked if I had applied or thought of applying for SSDI. I asked what was the benefit of doing that since I was getting paid more through my employer's disability plan. She said it is HUGE if you are young.....the benefit paid by SSDI is according to your yearly salary and if I made a lot of money the last several years but don't this year or next year, my benefit starts decreasing and this is HUGE for retirement monies (we are all going to make it to retirement, right?!). She said that applying doesn't hurt and the monies would be subtracted from my long term disability through my employer so I would still be making the same amount I am now. Just wanted all the younger women to know how this would affect their monthly benefit for themselves and their family and heck, I want my family to get the most they can in the event something happened to me. Just wanted you to know.....
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Sorry to jump in here and ask questions. I hope you dont mind.
Currently I am out of work and receiving short term disability from the state of NJ. I was told by the greeter at the SS office (I was there to get my son a new card), that you can NOT apply for SS until you have been out of work for a year. Is this true? It doesnt look like it from what I have read here.
I am concerned because NJ STD is only good for 6 months, and I will be out longer than that. There is NO way my family can go without my income for 6 months, I would lose my house. Would they give just me medicare? Would I get medicare? I am so lost in all of this but I better start now as I have been out of work since May. There is NO way I will be returning to work anytime soon.
Thanks Deb
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Hi Deb,
From what I was told, Inflammatory Breast Cancer (IBC) is the only breast cancer that qualifies for SSDI. You do not need to be off from work for a year, but you don't start getting payments until you have been disabled for 5 months. I was diagnosed in April, applied in May, approved in 2 wks, and my payments will start in Oct. I hope this info help. Much Love, Jessica
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Does anyone have any experience on getting Medicare? I was told by SS person that the wait was 2 yrs - I am the one with the insurance thru my job - If I don't work I have no insurance and can't afford the COBRA for sure....no insurance is my biggest worry (that and not making it thru this at all)
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HUNTERS MOM!!! What worked for me MAY work for you. I was diagnosed in April, and I had to stop working. I am on medical unpaid leave, my SSDI starts in Oct. I was told by my private insurance through work that I would not be able to stay on the group plan and have to get COBRA if I wanted to continue coverage. I can't afford COBRA either... I talked to the Oncology Social Worker at my hospital, and she suggested that I DO get the COBRA, and MEDICAID would pay the premiums and ALL of my copays. That means NO OUT OF POCKET FOR ME! Medicaid even back-dated the cards to July 1, and my COBRA started 9/1, so when I get my deductible bills, if they are dated after July, I send them my Medicaid card and it will pay the balance. I know these things vary from state to state, but I sure hope this works for you, it has been a life saver!!! Best of luck & lots of love, Jessica
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Hmmm ... I couldn't get MedicAID to help at all because I have monies in a checking acct and in my 401K. They didn't seem to care that those savings represented how I was going to be able to keep my house & car, pay property taxes and all those other things that SSDI doesn't quite stretch to cover! I've been paying Cobra premiums out of them so far. When it kicks in, SSDI will cover my COBRA pay't & electric/heating bills, and that's it! So, I'm still in a quandary about what to do between when Cobra ends and Medicare kicks in ... talking a period of about 8 months for me. Open for suggestions .. already exploring insurance options through the state, not looking all that great. So far, premiums are 2x what I pay for Cobra ... at that rate the savings will be gone within about 3 months.
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thanks all - I am married and have income from him so don't think I would qualify for Medicaid either (don't they look at family income?) My husband owns a business so maybe he can buy group insurance so I would be accepted??? I don't know - how do they expect you to continue getting treatments? Really seems like a catch 22!
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Huntersmom & Kwhite, Oh, I am a single parent, it does make a difference when there are two incomes. My savings has already been wiped out by this, and I may lose my house. At least have the medical part covered, huh. It is so hard to live with this, trying to get well, bills are piling up, you have to exhaust every penny you've saved, cash in the 401k (I did), then you can get help. If I survive this cancer, it will be really hard to rebuild my life again, there should be something eles out there to help us with this.
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It truly sucks to have to deal with financial problems as well as this crud! My husband hasn't worked in 10 years, he's been the stay-at-home to take care of elderly parents we supported. I was the income earner for our household (both parents got minimal SS pay'ts, they are now in assisted living with some support from us) We had planned to downsize & do some traveling when I retired.. the "reward" for 30 years of denying ourselves vacations and new appliances, of driving 10 yr old cars, and living conservatively. Well, that's out of the question now! We would have been "better off" saying "to heck with the saving, let's spend it now! we should have been buying the big screen TV's, taking the vacation cruises & trips to Europe, and designer purses ..." If I didn't have any savings, I would be receiving the assistance I need for medical expenses. Instead, I'm paying for them myselves & still driving that 10-yr old clunker!
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All, sorry if that last one sounds like a rant ... It just hit a sore button for me because someone hit my car today while it was parked, left without a note, the car will need to be repaired to be driveable, and I have a $2000 deductible on the insurance policy ... just one more thing!
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Does the first SSDI check include payments for those 5 months of "waiting period?" It sure would be nice if there was an extra "ka-ching" in the bank account ....
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