Social Security Disability
I know there are other threads on this subject, but wanted to start a new one based on my experience. I know all our situations are unique, but here's my two cents.
When I got my mets diagnosis two and a half years ago, my onc recommended I immediately apply for SS disability. I stopped working and was immediately approved, which started the clock for the 5 month period before benefits kick in. I am lucky that my husband's income kept us afloat during the waiting period and understand not everyone has that luxury.
After a year, I was feeling a lot better, had transitioned to hormone therapy and decided to go back to work. My SS benefits continued to be paid for 9 months (!) after I went back to work thanks to the "trial work period". After the 9 months, benefits stopped, but can be started again immediately if I need to stop working in the future. I can even go month to month depending on my health. For the next 2 years, I can restart benefits immediately, without going through another 5 month waiting period.
The best part is that now that I've been officially disabled for 2 and a half years, I am on Medicare even though I am working full time. This is a huge relief because if I do stop working and lose my health insurance, I will have coverage.
Anyway, I don't know if I've explained this very well, but wanted to make sure people are aware that applying for SS disability was one of the best decisions I made, even though I decided to go back to work. I now have flexibility of working or not working plus the added benefit of Medicare coverage.
Comments
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Wow, I wish I'd known that. I was off for four months and should have applied immediately. I had no idea you could go back to work and still get it, or just stop it and start it. Now I'm back half-time but am not sure how long I'm going to manage with that. I could have been through the five months wait by now.
Good information for people, thank you!
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Thank you for posting this-- I am at the 2.5 year mark and just doing the Medicare paperwork part, which starts for me on May 1. I'm really interested in knowing how you kept medicare coverage even while working-- SSDI told me that if I went back to work and made more than $900 a month, I would lose Medicare coverage. That is a main reason I never have even thought about going back to work!
It sounds like right now you have coverage through your employer, is that correct? But if you stop working tomorrow, Medicare would cover you immediately with no waiting period? I was always under the impression that I'd have to wait the two years again, so I'm relieved if that is not the case. I'm not thinking about working right now, but in the future you never know-- and having the option of trying to work without losing Medicare coverage would be a HUGE part of the decision for me.
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I work full time, have insurance through my employer. Medicare will be secondary insurance to my employer plan and will pay for the out of pocket expenses like deductibles and copays. I do have to pay for the Medicare part B coverage, but it still makes financial sense for me based on my coverage.
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I immediately was approved for SSDI also. My biggest problem now is waiting another year and a half for Medicare. I'm in COBRA right now and just can't afford the monthly premium. My husband does not have health coverage. I think I will have to apply for Medicaid and I'm a little worried about it. I hope I'm wrong but I keep thinking I will get substandard care. One of the Onc nurses told me that Medicaid only pays 8 cents on the dollar and that's why alot of Dr's don't accept it.
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The 9 month working period is referred to as Ticket to Work. The intention is for us who want to, to try to go back to work and you don't lose your benefits during the trial period. You can earn any amount during the trial period and you must report the earnings. The 9 mos do not have to be consecutive. If you exceed the 9 months then you could continue benefits only if the earnings did not exceed the limit which is really low.
I'm starting to feel like a human again but I don't know that I have the stamina for a long day. Besides that, my DH is having both knees replaced starting with the first one tomorrow. I'll be nursemaid for about 6 months so even thinking about trying this summer is out. -
My husband and I were just discussing this today. Do you have to quit your job to be eligible? I'm still working about 32 hours a week and get health benefits, but I can easily transfer to my husbands health coverage if I quit this job. I'm finding it harder and harder to work everyday but I wouldn't mind working just even 2 days a week, or 6 hour days vs 8.5.
Also, can you apply online? I'm assuming your onc has to sign your forms? Thank you so much for the information, it is very much appreciated!
Kat
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Yes you need to have a last day identified or have stopped working before you apply. I sent in my own most recent scans. I don't know if they contacted my then onc at MDA. Applying online is best. You receive a request for whatever medical records you have about a week later. Approval times vary. There is a question regarding whether you disability is terminal. That one is no fun to confront. After you apply the decision goes to a state disability determination office, that's who you call to follow up, not the local SSA office. I got a lot of misinformation at the local office.
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You don't have to quit your job, but you do have to reduce your work such that you earn less than $1,010 per month. In my case, I went on FMLA and disability at work. I used sick time and vacation time until it ran out, so none of my earnings were "earned".
You do apply on line, then a case worker follows up with you to review your case. The person who processed my application was extremely nice and sympathetic, she even read my chart notes in enough detail to see that we'd had a heartbreaking situation trying to adopt a child, which was abruptly ended with my mets dx. She expressed genuine sympathy and wished me well...which sorta' surprised me considering it is a govt agency, you know?
It does take a long time for Medicare benefits to kick in, you have to be on disability for 24 months plus the 5 month waiting period.
Also, one other tip, the 5 month waiting period is based on 5 full months of no work (or earning less that $1010). In my case, I worked enough in the month I applied that it was effectively 6 months of waiting, which felt like forever.
Chickadee is exactly right that the 9 months ticket to work, do not need to be consecutive months. You can literally just try going back to work to see how you do, then adjust as needed. In my case, when I went back to work, I was able to keep working (I even managed to get myself promoted!). I am sure I'll end up needing to go back on disability when I'm physically not able to work, but for right now, work gives me purpose and I really enjoy it.
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Thanks nancy, I did think you had to be unemployed or about to be due to your disability.
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Thanks for posting. I'm self employed, it is definitely tricky. How is a person supposed to live for 6 months with no income? That is difficult to understand.
Did your doctor need to fill out forms for you?
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They will contact the Drs. you list on your application. You can also send in whatever recent records you have. They will ask you for them. You want the records to demonstrate your inability to work long term.
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My dad finally convinced me that at this point, I'm not going to be able to get a job, so I applyed for SSD. I filled out the app online, then called the office to set up an appointment. The woman I talked to was very nice. She asked me to just fax her a release for my records, said we didn't need an actual appointment, asked me a few questions and said I should get money starting in April if everyting goes like it should. Wouldn't that be great. I sure wsn't planning to apply for this at 36, but I'm sure glad it's there.
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Thanks Ladies, this is great information. I had a scan on Thursday and I will get results on the 8th. If it's 'bad' as I feel it probably will be since I can feel the lumps and they're not getting any smaller...then I'm going to resign from my job and enjoy my life. I'm going to look to un-conventional treatments (protocel) diet and a lot of prayers. There is so much I want to do with the time I have left, and that time, quite frankly, doesn't include a headset. I think I have enough to keep me going for at least 5 months. Just looking out for my elderly inlaws and a new grandbaby in just days will be plenty to keep me busy.
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Kat, rather than resign outright, I would advise FMLA for 12 weeks. Use up your sick time, check for STD/LTD from work, check for life insurance benefits from work (you can file for accelerated benefits on the life insurance), find out what Cobra will cost you, file your SSDI online, etc. It is IMPORTANT to do these BEFORE you are not employed. No employment = no coverage (STD, LTD, Life).
I took the FMLA, filed ALL (STD, LTD, Accelerated Life, SSDI) the same week. I worked 4 hours per week, using 36 hours per week of sick pay. This gave me 12 weeks of full pay while starting the waiting periods for the disability to begin. All were approved without problems and I was able to continue coverage with minimal impact on our lives. STD began at the end of 12 weeks, LTD took over after 3 months, SSDI started at 5 months. -
Nancy,
Thank you for posting about SS as this will be very helpful to many. I just started Medicare after 2 yrs of disability. My company chose to be 2ndry after Medicare kicked in but I'm still covered 100%. I also have to pay both insurance premiums, Medicare part B & my company ins premiums but they are much better than cobra payments.
Terri
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I agree with Scuttlers--do not quit your job until you know everything available in the way of short term and long term disability from group policies. In my case once LTD was approved, even before the waiting period was up, my group life insurance policy was continued until age 65 with no more premiums. I can get accelerted benefis based on 12 month remaining prognosis someday, up to 90% of the policy amount. The LTD insurer hired a company called Allsup to apply for my SSDI (because your LTD payment will be reduced by the SSDI). The great thing is your LTD payments may be totally tax free if younhad the premiums deducted from your pay check.
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Nancy, thanks for starting this new thread. There's great information to learn! I've been thinking about when would be the right time for me to apply for SSDI. I am currently working and have worked right through my initial diagnosis of stage IV. I'm one of those people who is stage IV from the start, no surgery, no chemo, no radiation (mets to bones). I feel fortunate that I'm doing well on the anti-hormonals but don't want to end up paying for cobra for two years while I'm waiting for medicare. I'll be checking in to see what valuable information is posted here. I hate asking HR too many questions because I'm afraid they might start keeping tabs on me.
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Well, I don't think I'm eligible for STD or LTD because I haven't been with this employer for a year. I got this job November 1st and learned of my stage IV recurrence on December 1st. Since I had already gone through the bilat mastectomies with reconstruction 2 years ago, this go around is only chemo every three weeks. And although I'm tolerating it very well, I'm tired and I'm scared and I just want to be with my family. My employer knows about my recurrence but since I show up every day wearing a wig they don't think anything of it. Actually, I think they tend to forget. (which is fine too I guess)
Our plan is to at least wait until Thursday and get the results of the scan. If I can cut way back that might be ideal...however, I'm not sure I can get accomplished what I was hired to do in just 2 days a week. I asked to be a home agent but since I'm a 'supervisor' that wouldn't work either. (I work in a call center taking adverse event calls for a major pharmacuetical company) I Wonder what would happen if they fired me for absentism? Would I get umemployment? I wouldn't have to go on COBRA, because my husband never took me off of his insurance while we were transistioning over to my new insurance (which just kicked in Jan 1) Seems our biggest shame will be paying 2 deductibles but at least my scans and latest treatments will be covered.
If I choose not to take any more treaments and go the protocel route, that's a nominal fee of 100 dollars a month, so that coupled with my diet can't be any worse than cancer that isn't responding to conventional methods either.
Thanks Nancy for this thread, I've now got it as my favorites.
Have a great day
Kat
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I doubt you would meet the qualifications for unemployment. Quitting due to illness/treatments would probably disqualify.
And I would not just assume that since you have only been there a few months, that you do not have benefits which include STD, LTD, or at least Life Insurance. Do you have an access to your personel file on the internet? This would show what benefits you have. Or a quick call to HR would let you know. A "major pharmaceutical company" should have these benefits for all their employees.
Again, it is important to find out this information BEFORE resigning! If you have to stop working, file FMLA papers for the first 12 weeks until you make sure you have all the information that will benefit you. It is easy and protects your position for those weeks until you can make sure all your decisions are correct.
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Thanks Scuttlers...I already know I don't qualify for LTD or STD because I haven't been there a year. You also have to be there a year to sign up for FMLA. So now what?
I guess I'll wait and hear what they have to say about my scan. If it's significantly more progressed than it was when I was scanned in December that should mean something shouldn't it?
thanks again for this thread...it's great!
Kat
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Is it possible to keep working until you earn the other benefits?
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Wow,that just plan sucks! Sorry, don't know what else to say.
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Nancy, thanks for starting this thread. Do you have to be stage IV to qualify for disability? Do you have to be a certain age for Medicare? I am too young for Medicare, too young to retire, but am so totally exhausted from nearly 2 years of surgery, chemo, recurrence, more surgery, multiple SEs and complications - and just thought about resigning and living on DH income - which would be a little difficult but not impossible. I had a sort of "rotating" FMLA, but didn't take any of it. Maybe that would be a good next step - and maybe if I took time off I would feel like going back to work later.... Thanks much for any info.
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Linda,
There is a thread that is answering these types of Social Security disability questions. Very informative thread. I think many of us have learned a lot.
http://community.breastcancer.org/forum/113/topic/770569
Hope this helps,
*susan*
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This thread is very helpful. I run my own business, lately, I just want to stay home, I've lost all interest in competitive sales or making money. I've lost interest in my business. I can't close it down until end of year.....long detailed story...but I am planning to do just that.
I was hoping to apply for benefits in July and then get them in January. But I'd be working until January, so I'm worried about how that will work. If I have to work through December and then wait 6 months...well, I'm worried about how I would meet my bills.
I'm of course worried about all sorts of things.
But I'd like to think I could have some time to be home and be with my family.
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I've been self employed as a freelance designer for the past 5 years or so. When I got my DX in Oct, I fell apart, and so did my business. When I talked to the SSD worker, that is what I told her. She asked if I had worked at all since then, I told her I tried, on and off, but it didn't work to well, so I believe she put Oct. as my last working month. This was on the first of this month. She said I should start getting payments in April. Not sure how they figure their wait time but they will back date it it seems. I don't know if that's helpful or not, just thought I would put it out there.
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Hey Kat - to Chickadee's point about trying to work until you qualify for STD or LTD, tread cautiously because most likely you'll get burned with pre-existing condition. I learned the hard way...I had only worked for my employer for 11 months when I got mets, which meant they went back two years in my medical history (long story, but basically I didn't get a dime of STD because of my prior history with BC). Anyway, read the fine print, which I didn't do.
Linda - not sure about non-stage 4, but my general understanding is stage 4 is pretty much automatic approval. I think non-stage 4 might be tough to argue because the criteria is "permanent disability". Medicare kicks in 24 months after you've been earning benefits (so roughly 30 months later) regardless of age. I'm 42 and never dreamed I would have Medicare. It was actually bittersweet when I got my Medicare card in the mail (I even posted about being a little sad to be getting Medicare at such a young age, but then I shrugged it off and just decided to be happy to have the benefit per the advice of gals on this forum).
One thing I learned is that social workers at your treatment center are the experts on this stuff. Check with your onc or nurse to have them point you to the social work department if you have questions, they are really helpful and can guide you through the process.
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Thanks Nancy! I will speak to the Social workers at the center. Great idea!
Oh, and I have no intention of trying to make it work through to a year. I'll be lucky if I make it to the end of the month! lol I've got a nice little nest egg and my husband's income and health care benefits (he never too me off) so I'll be alright until things kick in. I have elderly inlaws that need my attention and a new grandbaby due any minute! So, plenty to keep me busy and my mind occupied.
And...I called in sick today! What a great feeling to have a beautiful day in front of me to enjoy!
Kat
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stormynyte....Thank you! Thats what I was hoping to hear.
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Kat,
Ironically my first grandchild was born on my first official day of retirement! I couldn't have timed that one better!!!!
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