For anyone with IBC that is applying for SS Disability Benefits
I don't know if this information has already been posted somewhere on this site, but I haven't seen it. I found this through a website dedicated to IBC. I thought I would pass the information along in the hopes that may also be useful to someone else. Social Security has what's called a Compassionate Allowance for IBC in order to sped up the process of obtaining disability benefits.
https://secure.ssa.gov/apps10/poms.nsf/links/0423022200
Hope this helps anyone who is going through the grueling process of applying or benefits!
Edit: Additionally the normal process for applying for benefits I believe is 18 months (I could be wrong, but this is what I've read). Also, they won't let you actually collect on benefits for 5 months from the start of your disease. This is important, that is not your diagnosis date. I found this out from my own application. They went by what was noted in my medical records as to when my symptoms began and not by when the dx was made.
Comments
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Thanks Bonnie! Yeah, I've been going through this whole process myself and just thought some info posted on this board that specifically applied to IBC would be helpful to anyone who has had the unfortune of being newly diagnosed with IBC. I know that, personally, when I found BCO after being diagnosed last August this was the first board I went to. It's a rather large site and I'm still finding threads, lol. I didn't realize that they would look any further back than the diagnosis date until I spoke to my local office this morning. I just found out today that my approval went through, yay!
Just in time too. Gosh the bills have been piling on! -
Absolutely Bonnie! That's such a wonderful idea, I will PM Melissa about it! I'll be honest, I don't know if you are working at the time of dx if it makes any difference. I was laid off at the time when I first started having symptoms, with no health insurance either! It honestly was a crazy time, but my boyfriend (who is a nurse) and I ended up getting married so that I could go onto his health plan. It's a long story, but that's ultimately how we ended up handling things. I was, however, collecting unemployment benefits up until my dx and that did not seem to affect anything. The way the women who I spoke to explained it to me was that the 5 months starts from the time the symptoms began as noted in your medical records. So I got the impression that work was not a factor in the equation, but I could be wrong.
I'm sorry to hear that you'll be loosing your health insurance. That's awful! I have heard about the issues with Medicare in Arizona. It baffles my mind that they can do that. I hope that something happens soon to resolve to it! We've been overwhelmed just by bills while surviving on one income. The Winter this year in Michigan was colder than normal, combine that with higher gas prices and ouch! For the last three months our gas and electric bill (they're combined) has been about $400 alone! It will be nice to feel like I'm contributing again. Cancer is hard enough as it is on the family and in the financial burden as well and it can get even more stressful. Thankfully, my husband is a saint!
Bonnie, you read my mind with your edit! I felt so conflicted when I got the call this morning. I was happy to finally be having some financial relief but at the same time it was just yet another confirmation of the seriousness of the situation. Don't get me wrong, I've been doing really well with treatments but I guess it feels like you've pulled 15 nails out of your coffin to have 2 more driven in.
Thank you for that information. I was wondering when I was going to get the first payment. That's a huge relief! As always, Bonnie, you are a wealth of information. Thank you!
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I have a question? Can you only sign up for SSD if you are unemployed? I have been working the whole time because I didn't really think I had a choice. There are days I'm really not feeling the best but I make myself go just because I don't want my husband to have to do it all. I plan on working as long as I can, but didn't know if you had to wait till you were completely unemployed before signing up or not. Any info would be greatly appreciated. Thank you all in advance. Leisa
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Bonnie, I have seen some of the other threads as well about crappy boyfriends and husbands! Definitely makes me feel blessed! A cancer dx is pretty heavy stuff to deal with and not all men can step up to the plate and face it head on with you! I, too, thank God everyday for having put him in my life! My DH and I met a year after my divorce from my first husband. That was a nightmare. It was definitely one of those situations where I wasn't looking to get involved with anyone and we met by chance. We had been together for almost three years before we got married. I have to admit my diagnosis probably would have happened sooner if I hadn't dragged my feet for a couple of months on the marriage idea. My first marriage was awful and I really didn't want to get married again. I had so many fears compounded by more fears, but in the end I am happy that I made the choice that I did. I couldn't imagine anything different now!
Leisa, I don't know the answer to that. You can call the main number in DC and talk to someone that would probably give you better information. I'd hate to speculate and give you misinformation. I wish you good luck and hope that you can find an answer to your question very soon!
Edit: Also, thank you Bonnie! I was also very pleased that none of my nodes were positive. They were affected at the time of DX. Thankfully I had a complete response to chemo. I have an 8 year old daughter that I need to be here for and I hope to remain stable for as long as possible! I have my rads simulation on Monday and I hope that the percentages that he quoted to me about reducing reoccurance are true!
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I haven't had a chance to talk to our nurse at work, but she is new and quitting. So there goes that idea. That's why I wondered if anyone on here knew anything. I was on short-term while I had my surgeries, but didn't know how things worked after that. Like I said I'm going to try to work as long as I can, but just wanted the info for future knowledge. I'm a planner and like to know all the facts so I can make an informed decision. Thanks for all the responses. Good luck ladies, you all are great women. I don't know how I would deal some days without you all.
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Perhaps someone can anwer my question: do you qualify for disablitiy payments because of your diagnosis only, or is your husband's income taken into account? My husband makes a good wage and has good insurance, so I am not sure I would receive any kind of disability if that is factored in to my case.
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The criteria I heard of was that you personally would have had to be working for a certain amount of time over the last 10 years to qualify for SSDI. If you did not work; social security would not have received any money for you to qualify for funds. I'm not sure if you can qualify under your husband account being married. You may be able to find out more info from socialsecurity.gov. IBC is a compassionate allowance with them that would qualify you as being disabled.
Terri
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Thanks, ibcmets, I'll check out the website when I get a moment. I have worked a part-time job for just about 10 years. I'm still not sure I'd qualify for SSDI, since my husband makes good wages. I'm wondering if it it the household income that is factored in, and not just the wages of the person who's applying for SSDI. The website may be less intimidating (and less depressing) to me than some government employee on the phone saying, "Nope! Not gonna approve you!"
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Your household income is not a factor when detemining disability benefits. It is a factor in determining if you qualfy for the supplemental income. My husband is a charge nurse and his wages were only used in determining the amount of credits (which is what you build up from working and paying into social security taxes over the years) and if I was eligiable for the supplemental income. I've worked since I was out of high school so I do not believe I had to "borrow" any credits from my husband for eligibility. I did not, however, qualify for the supplemental income due to his wages. Disability itself is not determined based on household income. It is based solely on the number of credits you've built up over the years by paying into the taxes (this is what determines your monthly amount) and your medical diagnosis. I hope that helps!
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Yes, Holly, that does make the picture more clear. Thanks for the additional information!
Also, would any know about this:
as I look on the website for the disability qualifications, of course I see that you have to submit all the testing dates, doctors and results. The stage iv diagnosis I received was from a PET scan. Will this be acceptable in determining elibility? Or would I have to have had biopsies of the various areas (dx of bone mets). I hope I am making sense here. My onco did not recommend biopsies and we went from the PET scan results to a chemo schedule.
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No problem, glad to help! As far as I know a biopsy is not necessary. They go soley off your doc's diagnosis and your medical records. They just ask you to provide as much information as possible to make the process easier on them so they know what they are looking for! It helps them to know what information to request and from where. After you've completed the initial application they will mail you medical information release forms to sign that they send to all the doctors that you've listed to obtain your records. You'll also get a questionnaire about your ability or rather inability to work. Make sure you list ALL of your side effects from chemo and meds that you are taking. If you are taking anti-anxiety meds, make sure to list those as well. It's kind of obvious with a stage IV diagnosis, but you have to spell everything out to them.
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Once again, very helpful information, Holly. The reason I asked about PET scan results vs biopsy results is that the process for applying for SSD seems to be a rather lengthy process of paperwork to fill out. I want to be reasonably sure that I have a shot at this before I apply.
God_is_good: Can you say what the length of time was from when you applied for benefits to when received notice you were approved? I also was wondering about your comment that "Medicare kicks in automatically two years from SSD benefits starting". Is this only for those who need it? I am on my husband's health insurance from his employer, and know nothing at this point about Medicare.
Once again, thanks to everyone for all this helpful information.
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TheDivineMrsM, I just sent you a PM.
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Hi Holly. I live in Wixom MI and was diagnosed with IBC in April 2007. This is great information....I share this with others newly diagnosed with IBC. I am a huge advocate for IBC so let me know if I can help in any way.
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Hi Pegaroo! Sending you a PM.
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Hi everyone. I know I have been a bit off since I have been in chemo treatments for the past 18 months.
I filed my SSDI paperwork as soon as I was told by my doctor that I could no longer work because of the metastasis. I have spreading to my left eye, so can no longer drive. I received my face to face with SS Less than a month after I stopped working. I was on short term disability. They approved me on the spot. They even gave me a worksheet with my benefit amount and told me I qualified FROM THE LAST DAY I WORKED. So my first benefit check will be in April retro to September, 2011. My benefit actually starts March 25th, but SS pays a month behind. So April 25th it should be in my account.
Hope this helps. -
Holly, sending you a pm.
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Oh my gosh! I am so sorry folks, I am new to this discussion board. Thanks for telling me Bon.
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Well folks, I have finished my last work day and will apply for SS benefits. Holly had some good comments about it on this site. If you would like to comment, I would love to hear about your experiences with social security.
I am presently NED but my doctors are watching for a recurrence of IBC. I am applying 5-31-12 for my benefits. -
I found my lump on 11-1-11. I had the bx on 11-4, confirmed cancer and had a double mastectomy with reconstruction on 12-6-11. I was told Stage 3a, 5 of 19 lymph nodes positive. grade 3. Chemo then radiation, I have one more dose of herceptin next week. I am scheduled to go to stage 2 of reconstruction on 12-27-12.(I can't wait to get these expanders out!!!) I was off work for 8 months. I have been back full time and finding it too difficult. I am wiped out. Also have lymphodema in my right arm and hand. I would like to quit and try for SSDI. I am worried that I will not be accepted. Any advice?
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Thank you, I feel more confident. I did get STD and then LTD and my claim is still open because of the upcoming surgery. My LTD carrier uses Alsup for people who need to apply. Should I use them, they say no cost but not sure I believe that. My insurance is thru my husbands union also. It is scary to think about quitting my job, but the thought of working til I get sick again is so depressing. You have been very informative.
My Pathology report says "Infiltrating Ductal Carcinoma" not Inflammatory.
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Liz,
My company also uses Allsup to help apply for SSDI without any fees to me. It worked well. I did have suspicions of inflammatory bc in my ultrasound. If you have something indicating inflammatory; you should submit this due to the compassionate allowance for ibc, metastatic is also a compasionate allowance.
Best wishes on completing your surgeries.
Terri
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I had stage 3b IDC and was approved very quickly - funds deposited maybe seven weeks after I applied, plus they went back to the date of my first diagnosis, which was stage 1 IDC. I applied online and submitted a package of copies of my medical stuff, plus I provided a list of doctors and phone numbers within my application. I also received the direct deposit before I received the approval letter. I was pleasantly surprised, to be sure!
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yes, mine is IDC, I am sorry I got into the wrong forum. I appreciate your time and advice. Good luck to you all and have a wonderful holiday season. Everything seems to have so much more meaning now!
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Hello. I find it interesting that your onco did not recommend a biopsy. May I ask why? It my experience, it seemed like I had to have a biopsy first in order to be diagnosed. I haven't heard of anyone skipping that part and going from a PET scan.
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My SS was approved within a couple months in oklahoma due to being cancer.
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The compassionate allowance is typically applied to Stage IV due to the terminal diagnosis. SSA will not make the determination, your states Disability Determination board will. In addition your date of disability is also tied to the date you were no longer able to work, which may or may not be connected to your diagnosis date.
When you apply provide answers and documentation that supports the likelihood that your disabling condition will prevent you from working for 12 months or more.
Been through the process before for myself and family member so hope i have helped with above. Lawyers don't come into the picture unless you are denied. Luckily I didn't need that. -
Wow, SSDI would have been great to have when my SDI ran out. but once again i am late to the party. Will keep it in mind for the next poor soul who is having a tough time.
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I have a fair amount of experience working on SSDI claims. If anyone has a question, I'll do my best to help.
I've been a volunteer advocate for over 10 years and, except for California, I've aided people nationwide.
NOTE: This is not my job, I've never made money doing it. Settling my own case took so long and was so frustrating that I want to make the system work.
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Hello Bride,
I have posted this in a separate entry but then saw your post and decided to send this to you directly. I would really appreciate your input:
I was diagnosed with stage 3 triple negative Inflammatory Breast Cancer in March 2013. My BRCA1 status tested positive. During that year I ent through A/C + T chemo, a double mastectomy (14 axillary lymphnodes tested positive) but they got negative margins, and boosted radiation. I chose to have a hysterectomy. I have lymphedema in my right arm. Through all this I continued to work (I am the sole breadwinner) from home, very limited hours, and a crazy schedule. I never had any idea that my IBC status qualified me for accelerated SSDI benefits. So I kept struggling to work. I am currently planning to start reconstruction in February 2015. My physical and mental and emotional health has taken a decline after all the intensity of the treatment and I am considering disability. I have read in your forums that I should put my diagnosis date as my starting date of disability. However I made more than the SGA, so I am worried I will be disqualified. Does anyone have any experience with making more than SGA, under special working circumstances and being awarded disability and back pay? I am scared to quit my job, though I feel my health desperately needs it!, since we are just surviving paycheck to paycheck and have no savings at this point. I may have a phone consultation with a lawyer on Monday. Any information you all can pass along will help!!!!
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