How Many Stage 4 Girls are getting SS disability..
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Scoobie, is your insurance through an employer? If it is, if the company has more than 100 employees then that insurance is primary, Medicare would be secondary. If less than 100 employees then Medicare is primary. I also have a private plan and Medicare. For me medicare is secondary. Hope that helps.
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Hi Scoobie - another question that comes to mind - is your PPO still available to you after 24 months? The reason I ask is I'm on LTD through my employer. I had to apply for SSD as an "offset" to the monies I receive via LTD. I am able to continue to participate in my employers insurance plan at the group rate for 24 months, at which time Medicare will kick in. For me, I'm thinking it will be more cost effective to buy a secondary insurance policy for the 20% that Medicare doesn't cover. I'm interested in the options available to you from an educational perspective
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Scout-a-bout, I was in exactly the position you described last month when I reached the 2 years on disability point. I also had to apply for SSDI as a condition of my LTD plan and maintained my employer provided health insurance via COBRA for those two years since my employer terminated me as soon as I applied for the LTD. Once on SSDI, the Medicare card came to me automatically and a few days before the month it was to begin, my health insurance sent me a letter terminating my coverage on the basis that I was now eligible for Medicare. I ended up buying a separate supplemental policy to cover the Medicare gaps. This is the first month that I've used the new Medicare card and gap insurance and haven't yet received any bills for my care so don't yet know the full financial impact of this transition but from the treatment perspective, it was seamless. I found my supplemental policy by searching online for medigap policies in my state then I chose the same company that had provided my employer-based health plan (because my coverage had been excellent)
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Thank you so much to all for the helpful replies. I have not fully figured this out yet, but I'm making progress. It seems employer plans can definitely be retained to use as primary/secondary with Medicare (depending on size of employer), though of course the employer plan will probably be terminated if you have to stop working. I've also discovered that marketplace (Obamacare) plans may be retained to use as secondary with Medicare. The situation with individual grandfathered plans (my case) is unclear, though there is apparently someone at BCBS who can answer this question but they are never available. I have been able to determine it will be my best option if I can keep my plan since it costs about $300 per month and the cheapest MediGap plan I can find is $500 per month (they get really expensive when you are under 65 since they know you have a medical condition.)
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This all just keeps getting more confusing. BCBS, SSA, MD Anderson and United Healthcare are all giving me contradictory answers. Either I can or I cannot keep my existing plan to use as secondary with Medicare primary. It's so frustrating. To cap it all, UnitedHealthcare is now saying they can't offer me any sort of Medigap policy at all (not even the one listed on their website as available) and the cheapest other quite I have had for a Medigap policy is $700. Ugh! Any insight much appreciated!
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Hi Scoobie - I can only imagine how frustrating this is. My question to all of your statements is why?
1. Why is MD Anderson in the discussion about your secondary insurance?
2. Ok, the plan is to have Medicare as your primary- why is UHC stating they can't offer you a secondary insurance? Isn't AARP a UHC product? Who said you aren't eligible?
3. Are you the insured on your current medical coverage or are you a spouse/dependent?
4. Have you reached out to a local SS office/rep for assistance?
I'm just trying to get my arms around the feedback you received to see if I can assist at all, with my >30 yrs in the healthcare industry.
Thanks.
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Thank you so much for offering assistance - here are the answers to your questions.
1. Why is MD Anderson in the discussion about your secondary insurance?
It's where I get all my treatment and they have a lot of business people who are really knowledgeable about billing and coordination of benefits.
2. Ok, the plan is to have Medicare as your primary- why is UHC stating they can't offer you a secondary insurance? Isn't AARP a UHC product? Who said you aren't eligible?
I don't know why UHC said this and yes I was speaking to the people who manage the AARP product.
3. Are you the insured on your current medical coverage or are you a spouse/dependent?
It's a family plan with me as the named plan holder.
4. Have you reached out to a local SS office/rep for assistance?
Not the local office, just the central number. Would you advise going through the local office?
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Scoobie, call your local SSA office and ask to speak to someone knowledgable on medicare and SSDI. Each office should have someone who knows the ins and outs of it. Next, I'd call an independent insurance rep. Have them look over your situation and advise you on how to proceed and which plan to get. You can buy your medicare gap plans thru them direct and they often offer better options since they work for YOU and not the insurance company. When you meet with the insurance rep, make sure you have a list of all docs and hospitals your receive treatment from/at. This will help them make sure your docs/hospitals are in network for your medicare gap plans.
Good luck!
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is it five months from date of application? Or five months since you were able to work? Or simply five months from stage 4 diagnosis
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Swess , I believe it's 5 months from the time you are approved . I just applied today.
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It is 5 months from the date your MO puts down that you became disabled.
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I sent flowers to the woman at the SS office....I️ was approved in less than a week. I️ am a single mom and they are paying me $1200 a month and my daughter gets $600 a month.
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Hi,
I am not a frequent poster....mostly just jump on when yet another issue arises and I want to see if anyone else has had to deal with it! So, I was diagnosed with metastatic breast cancer almost 4 years ago (June will be 4 years) and, about a year after diagnosis I was awarded social security disability. Now, I just received a for saying my case is being reviewed and I had to fill out this EXTENSIVE review form (which I had to add A LOT to because there weren't nearly enough places for all of my medical professionals and places I've been treated over the past year, have been hospitalized, etc...) . Well, when I went to turn it all in, I told the woman at the social security office that I still have stage 4 cancer and I thought that was an "automatic approval." She then tells me that it IS an automatic INITIAL approval, but that EVERYONE gets a review done from time-to-time and if they see improvement in your condition, they can take your disability away. Well, my condition HAS improved because the Xeloda I'm on has definitely beaten back the cancer, TM is much lower, no new bone lesions showing up, so scans "stable" (but the old stuff will always still show) however, ON the Xeloda I feel WORSE than I have ever felt in my entire life, bar none! I have worse aches (bone, muscle, joint) than when I was on an AI and extreme fatigue, especially during the second week of my two weeks on/one week off cycle. I tried to make all of that VERY clear in the form. That, despite the fact that the cancer has stabilized I am still in pain almost constantly, sometimes severe pain. So here is my question: Has anyone else with stage 4 had to do a disability review at a time when your caner was being beaten back? If so, were you denied??? I honestly think I'd have to stop treatment if I get denied. If I lose my medicare, etc... I won't be able to afford it!
Thank you all for any experience you have to offer with this!
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Mary,
I’m not stage 4 but I used to process social security disability claims and never ceased anyone with stage 4 cancer unless they returned to work and earned too much. Everyone has a periodic medicalreview of their case, I believe every 3,5 or 7 years depending on condition. Even people with Down syndrome or similar. Please don’t fret, social security is an inefficient and infuriating process but you should be fine!
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I had my review last year. I have been Ned for over 7 years and on no treatment for 3 years. I got reapproved. I was lucky that my paperwork was only one page that asked if my condition was worse. I answered yes, because my neuropathy is much worse than it was 4 years ago. They asked if I had seen a dr in the last 2 years and if I had went back to work. I didn’t volunteer the information that I am Ned and no longer on treatment
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I'm so bad at posting here, that I have no clue if this will show up where I want it to or not, but Pre-K79 and Lauriesh, thank you bot SOOOOO MUCH for your replies! I feel so, so much more at ease now! Pre-K79, I live in Lancaster, OH! (Saw you are in OH) . I'm so glad you DON'T have stage 4! I am thrilled that I have survived nearly 4 years even with it spread to MULTIPLE areas (not just bones, left retina, my left lung area fills with fluid, etc...) The Xeloda certainly has been working but, today is a perfect example, I was in bed by 2:30pm ish in very bad pain and just exhausted. I absolutely could not hold down any job at this point, so I'm very relieved that both of you feel it shouldn't be an issue.
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Marynp, I just got done with my social security disability review in March and the forms were an absolute beating! They started my review in December and it had been less than 3 years since my last approval and I am Stage IV too. Yes, I’m doing better in some ways than my previous review but not doing well enough to even consider working. The review forms were EXTENSIVE (first one received in Dec 2017 and then I had to complete 3 more in Feb/March regarding pain, daily function & activities, and last 15 years of work history) and I spent a lot of time clarifying what I can and can’t do and my current chemo treatments. The whole thing was extremely time consuming. I got a letter with the decision stating that my benefits would continue shortly after I sent all the forms in. I’m not even sure if they had time to read them or if they just stuck them in my file. (They also got my approval to request medical records from my MO, so I didn’t complete any of the forms sent in Dec that requested specific doctors and hospitalizations.) I truly don’t think you will be denied but the whole thing is a huge pain, especially for those who are feeling so poorly. There has to be a better way, for sure.
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mary, my situation is slightly different, but I will chime in here anyway. The difference being that, although I was approved quickly through Social Security for disability, which qualified me for medicare, to collect any monetary benefit, I had to apply through the state employee retirement system (sers)since I had been a teacher’s aide at a public school. I filled out all the info and was sent to a sers doctor who was a real quack, and I was denied. I got a lawyer who took the case on contigency meaning she only got a fee if I won my appeal and after about eight-ish months, I did get approved.
At that time, I was told my case would be reviewed in one year, Sure enough, a couple months ago, I had to go see a sers doctor, a different one this time. I have been stable for a number of years, and I thought for sure I’d be denied again. Surprisingly, after the sers doctor visit, I received a letter stating my disability would continue, and this time they didn’t mention another review date.
I think they looked to see that I was continuing with doctor appointments, I see an onc and primary, I still take meds, I still scan twice a year. It wasn’t like “oh, now I have the disabilty money so I can skip going to the doctors.” Maybe that is what they look at.
Best wishes to you, I hope it all works out. You have an appeals process if you need it and can seek an attorney’s help if necessary. Hang in there!
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Thanks Southernsurvivor and DivineMrsM
. Southernsurvivor, I feel your pain! The forms they sent were extensive, including the questions about how long I can do all these different things; sit, stand, drive, ride in car, etc... and, of course that is utter nonsense because it changes from one day to the next! There are days I can't even drive myself to a doctor's appoint (thankfully I have wonderful friends and family) and other days I could probably drive 2 hours! I tried to make those things fairly clear and that most days I'm in bed by 2:30 or so due to fatigue. And I had to list all these doctors appts and every single lab ordered on me (the dates!!!!) for the entire last 12 months, as well as all the scans! Totally nuts. So, they can surely see that I have continued to go to doctor's appts and have testing. Hopefully this will all be a total non-issue and in the next 3 or 4 months I'll hear. Like others have said, my initial approval was immediate, I think I heard w/in a week or two that I was approved. I had no clue that there was any possibility that it could be taken away from someone with stage 4, unless that person chose to go back to work.0 -
Has anyone with MBC/stage 4 had difficulty getting your docs to complete paperwork for FMLA or *private* (such as workplace) STD/LTD?
I'm still working and hoping to hold out a while longer. My doctor volunteered at a recent appointment that she would not support my taking disability at this time because she thinks my functional level is too good. My functional level is pretty good - on good days - but I have had to cut back on hours and on days I don't work, I may sleep 14 hours. Fatigue is my worst specific symptom. When I work long hours, I get really exhausted and my workplace will probably require me to bump my hours back up soon. I am way too young for Medicare outside of eligibility due to a disability - so qualifying for Medicare would be a big deal in terms of on-going access to healthcare (assuming the whole thing doesn't go belly-up!). Like many of us, I am grateful to be doing well but struggle with hoping to have some quality-of-life, wrap-things-up (frankly) time off before I get too sick to do anything. When to take disability leave can be a weighty decision. I realize that there is the get-a-new-doctor option but I am hoping to avoid that.
Wondering if this is common. Anyone dealt with this? Thanks for your input.
(I realize that this thread is really about SSDI so I can redirect this to another thread but haven't found one on-topic.)
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initially dx with bone mets in 2013 and continued to work FT for the following three years. When my cancer spread to my bone marrow, I had the support of my oncologist to go out on STD which turned in LTD both through my employer. Once I started LTD, my employer assigned a vendor to facilitate approval through Medicare. Medicare provides an off set to my employers LTD payment. After 24 months on LTD I will no longer be covered by my employers insurance, will transition to Medicare and whatever secondary insurance I decide is the best for me. I have always had the support of my oncologist throughout this process
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Thanks, Scout-a-bout. Insight on your experience is helpful. Appreciate it.
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Hi Lumpie,
This is my first post so hopefully I have all the settings correct. Anyway, I am currently doing the online application for SSDI (Social Security Disability) and there is a statement in bold in the instructions that says the doctor does not decide if you are disabled. SSDI will decide based on your application and medical records. You can do the application yourself and mail in all of your medical records yourself. The instructions say this is faster than having the doctor's office send them in. I am hoping that they don't ever even contact my doctor, but if they do it will be someone in an administrative role that will send in the forms. I can't imagine my doc taking the time to do that.
I feel this is a very personal decision. The doctor does not know how you really feel and I know I want to use the little energy that I have to maintain my health as long as possible. The website for SSDI is super informative and you can make yourself a social security login so you can view what your benefits would be before even starting the whole process.
Best wishes to you.
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I get disability but not much because of my disability retirement from my previous job but every little bit helps when you can't generate income.
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Hi I am on Medicaid & have been since my 2nd dx in Oct. 2018. Due to I had a divorce & paid Cobra and the time was up & my employer at the time did not offer insurance.
I need a question answered that I can't find an answer to. Will I loose my Medicaid if I apply for SSD? I now have Stage 4/metatastic breast cancer in liver dx this year. 4/2018.
I work very little due to my new treatment:
Draw very little $
Ibrance/Falsodex. This treatment is rough on my body. Nothing feels the same & I also had a hysterectomy this year. I want to apply but I have unanswered questions.
Please help.
Thank you,
Kelly
3rd dx with Breast Cancer
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Hi Kell001,
I used to process the medical portion of disability claims for social security. As I remember, those approved for SSI (need based) got Medicaid. Those who paid into the system thru a job were SSD/DIB applicants and got Medicare but had to wait 2 years after approval to get the Medicare benefits. Some people are eligible for both SSI and SSD based on past earnings and current financial situation. I think SSA had a national hotline you can call, I know it is hard to get through at your local office. Best wishes to you!
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If relevant, I wanted to encourage other MBC'ers to share your workplace stories at this new discussion:
MBC and Your Job -- what's your story?https://community.breastcancer.org/forum/8/topics/...
Interesting thread!
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SSDI rules require that person worked at least 5 of last 10 years. My wife stopped working 6 yr ago, so we did not bother to apply.
Fortunately, we are doing fine without the disability payment.0 -
I have now gone out on disability. Shortly before, I started looking into some of the details of Medicare. People talk about it like it is a panacea. I think that most of those people must have access to secondary insurance. For those of us who are under 65 and are put on Medicare after 2 years, we only have coverage for 80% of medical expenses. With what my medical expenses are, that is still not anywhere near manageable. And because we are on a government program, we are not even eligible for patient assistance from drug companies. This is very distressing. My research on Medicare Advantage plans, and eligibility for people who are under 65, is not clear. Has anyone come up with a good solution for these issues? Would love to hear what you have found helpful... things that work....thanks.
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Lumpie what you describe is exactly why I haven't applied for SSDI, and it angers me that I'm giving up the money I paid in to Social Security for 25 years because I don't want to be forced onto Medicare in two years (although at the rate I'm going I'll be lucky if I'm still alive in two years). I've spent hours researching and every time I sit down and crunch the numbers, it seems that Medicare would bankrupt me faster than my expensive private insurance will. My husband and I are both self-employed but I haven't been able to work, so just one income now, no employer disability plan, and no employer-sponsored health insurance. I cringe every time I see someone post that they are desperately waiting to hear if they are getting any grants so they can cover their co-pays. What happens if they don't get it? The scariest part is that Medicare has no annual out-of-pocket maximum. Last year I hit my OOP max by the end of March (partially covered by assistance from a drug manufacturer) and didn't have to pay another cent for the rest of the year. I feel stuck between a rock and a hard place.
Several articles I read said to stay away from Medicare Advantage plans (or be extremely careful in buying one) if you have a serious illness like cancer because they often cost more in the long run with higher co-pays on big ticket items like hospitalization and chemo (and most have a 20% co-pay for clinical trials), limited coverage when you're out of state, may not cover the first 20 days of a nursing home stay, etc. Also a recent policy change that allows step therapy in Medicare Advantage plans is being protested by the oncology industry " ASCO and the other physician groups have urged CMS to reverse the step therapy decision on grounds that such requirements could end up denying a significant number of patients with cancer timely access to medications their doctors deem best suited for them, based on assessments of each patient's unique circumstances." https://www.onclive.com/publications/oncology-live...
I wish there was an opt-out provision so I could collect SSDI and keep my private insurance.
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