Topic: UPDATE ON DISAILIBTY /CC

I had previously posted that I was not approved for disability for my intrahepatic CC.  I had received a letter from SS giving me my regular SS (which I had applied for at the same time).  The letter indicated that THIS was ALL I was eligible for, so I assumed that they had turned down the disability.  Then, in July, I received a packet again from SS indicating that I was indeed approved for disability and would receive my first payment in August, so now my monthly payment will be raised to the disability level.  My disability was determined to have begun at the end of January, when I had the CT scan that diagnosed the tumor inside my liver.  They figure 5 months after that as the starting point for your first disability check and due to the particular timing of my diagnosis (late in the month) I guess  , that figures out for August. 

In addition, they indicated that due to the nature of my disease, and the current prognosis, I will be review in about 3 years to see if I am still disabled.  That means that in 3 years, there "could" be a treatment that cures me....OR, ......the cancer has not come back after my curative intent surgery in Feb and as such, they may dump me from disability.  (Personal note:  At that point, I will be 65, so I believe nothing will really change in my case...my disability amount just becomes my social security amount). 

There are two other Review Designations to consider:  One, they review in about a year...for those people, they expect to see a cure state at that time.  The other review is for those people who apparently they don't expect a good outcome and is set for 5-7 years.  There are many other diseases besides ours that fall into disability with speeded up approval status.  I saw no differences from the three types of CC and doubt that there would be any in getting approved.

In review:  While you CAN apply for disability on line at the SS website, I personally would make an appointment to go into the office to speak directly with the SS specialist. (Note:  You CAN make a phone appointment also with these people if you are too sick to go out or would rather do it that way.)

  The guy we talked to went out of his way to look at just WHEN this disease became known and truly was a disability.  His reasoning was that the 5 month waiting period to start payment checks would begin from that point and he wanted to be sure that there wasn't anything I was leaving out that would have indicated the disability sooner.  Also, make sure you make a list of everything you have for symptoms and medical treatments you have had, including dates.  While CC is an approved disease for fast track approval with disability, all of these things are looked at by the doctor who approves the disability. 

Another items that is overlooked by many is that two years after getting disability (24 months), you are then eligible for Medicare early.   In my case, that means only a year before I would have been eligible anyway, but okay.  I also wasn't sure if I "wanted" to do Medicare early because though our personal retirees insurance (not a Cobra) is expensive, it pays very well, never has questioned any treatment and pretty much allows us to go where we want for treatment without any waiting times or approvals.  Our out of pocket is very high...at $11-12K, but worth the piece of mind.   It will be less next year when my husband has to go on Medicare and is off our retirees' policy.   However....as to me doing early Medicare in 24 months.....I have been assured by some people that I can go where I want to go.....the same as my private policy.  I'm still checking into that....because first of all...the provider has to ACCEPT Medicare....or my own personal insurance, for that matter.  I'm not going to worry about it for another two years until it happens.  At this point,  we have been told that I do NOT have to accept Medicare in 24 months if I don't want to take it.  (but do have to accept at 65 of course), and our personal policy right now says that if Medicare doesn't require that I HAVE to take Medicare for my disability in 24 months, they will not force me out of the policy and onto Medicare.    Everyone's insurance situation is going to be different.  I just happen to be in this position and trying to line my ducks in a row.  For now, my ducks can wander around all they want as I don't have to make any decisions as of yet.  Things can change in two years...with Medicare....with our insurance....with my health....who knows?   

Now, I'm going to complicate things even more.  My husband retired at the end of June, and in talking to an investment person, we discovered that the amount of my disability payment can be increased by the spousal amount on my husband's payments.  So, from the time I started with just SS payments on my own work record ....first payment in June....I will received about $200 more for straight disability (based on my own work record) ...and in August I will receive yet another increase for the spousal part.  We had originally been told that the disability payment was only based on my work records.  HOWEVER...this is not automatic......you need to apply for it.  Hence, I am going to have another meeting with a social security specialist (this time on the phone) in September to complete that.  He said that if it isn't in time for the complete check that should be due in late September, I will receive the rest of the amount in a separate check about 2-3 weeks later. 

One more thing....about these appointments/meetings.  If you set up an appointment with the SS either in office or phone, they count the day of the phone call as the date the clock starts ticking on your application.  That is...IF you apply even for straight SS ....if you call for an appoint on August 1,  but can't get an appointment for 5 weeks, they still use August 1 as the application date.  there is a two month wait for SS to start, so you can see where that makes good sense to do an appointment.  It doesn't commit you do finish the application process.....my husband didn't at the time...but then he did have to wait out another two months before his checks will arrive. 

This was my/our personal experience with SS and disability. 

Julie t.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: UPDATE ON DISAILIBTY /CC

Julie.....thanks a million for sharing this important information with the US patient community.  Your extensive work on this subject will benefit many others.
Thanks again,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: UPDATE ON DISAILIBTY /CC

Julie
Thank you for sharing all your hard work
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: UPDATE ON DISAILIBTY /CC

After some initial bumps in the road with SS, I did a phone interview and flooded the person with info.  I didn't hear anything for a month and called back to find out that I had been fast-tracked and approved for disability in two weeks.  The best part of the phone interview was that I was put into a call back queue and did not have to wait, listening to messages and music for over an hour.

After all the horror stories I had heard about SS I was blown away by the cooperation I got.  Of course, they were supposed to convert me from retirement to disability July 1 but that did not happen.  Time for another call.

Duke

Fighting with dignity, not desperation.  Live, Laugh, Love - One Day at a Time. 
The past has passed.
"Second star to the right and straight on 'til morning."  JM Barrie

Re: UPDATE ON DISAILIBTY /CC

Duke...two weeks and you are approved for disability?  I wonder whether you came across so well informed that rather then having to encounter you again the SS case worker sped up the approval process?  So glad you achieved your goal so quickly.   Wonder who will answer the phone discussing your next quest?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: UPDATE ON DISAILIBTY /CC

One caveat to disability is if you are already  are receiving Medicare, you are not eligible for disability. I verified this with SS.  Even though you work beyond 65, once on Medicare you are not eligible. If anyone has had other experience, would like to know.

Re: UPDATE ON DISAILIBTY /CC

Last born,

I was age 62 when I applied for SS and also applied for disability at the same time and was eventually approved for disability.  When I reach full retirement age, then my disability amount stays the same and converts to the same amount under social security.   

I was first on SS for two months and now will be bumped up for my next check this month to  disability amount (about $200 +  more per month).  After 24 months, on disability, I am eligible for Medicare early at age 64+  However, I don't have to take it until I reach age 65 if I don't want to (we have an excellent medical plan that I may want to hang onto as long as possible even though it will cost some more out of pocket). 

It seems to me that there is a glitch in the system....that disabled is disabled......no matter when.  In my mind....it would seem that the SS payment should go up to the disability amount no matter when you are disabled.   Gah.....trying to understand the government!!!!

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: UPDATE ON DISAILIBTY /CC

My ducks "were" in a row, back in 2014, but  now things  have changed regarding insurance and SS and disability.

When my husband retired, he effectively changed my insurance status with the company (a retiree's policy ) and  with  SS.     

   Sincre I was no longer on an active working person's group policy, I no longer  could opt out of medicare until 65 while on disability.     So,  recently, I received a letter from SS saying that as of July 1, I will be on Medicare, whether I like it or not.    If my husband had continued to work.....and stayed on the active employee insurance plan, then we could have gone forward with the original plan.  But, ...... that one change messed up the best laid  plans.

At first, I was miffed, but figured that I'd just get the really good supplement like my husband has and  so be it.  However, today, when I called to sign up for one, I found out that there is NO supplement available for me  in our area since I' m on disability.   Nobody is selling it.   I am forced to take a Medicare Advantage PPO  type policy instead.   It will only be until  next April 1, when I turn 65 and then can  convert to a supplemental type  insurance and drop the Medicare Advantage, but   it still   is a problem because  no cancer center in town or  anywhere remotely close is in network.  And....I go to Mayo Clinic in Rochester for my oncology appts and scans...and  they are not in network, nor are the hospitals.     I can still go there, but every thing will be 40 % of the cost for my out of pocket.     I did find out that there is a deductible amount at least.....$7500 for out of network doctors/hospitals/services  per year  so  once  I have reached that, I  will no longer have to pay, even in out of network facilities.     It will be  a big pain  .....as I will have to pay any bills personally and then apply for reimbursement.     And.. . .I've already been on my retiree policy for half a  year and almost met that out of pocket max of almost  $5K.   It would be "nice" if the  out of pocket amount we've already paid   with the retiree policy could transfer to the  Medicare Advantage policy, but  I don't think that  would be the case.  If I find out any different, I will post about it. 

As I said... ..at least it is only until next April 1 .....but  we had worked so hard  two years ago to make sure that everything was set up .  But, at that time, I did   sa y that an ything can change...and that especially goes for the government.   Sooooo, ........  as you can see,  everybody's situation can be different...and it certainly can change.   I was   very upset earlier today, but  eventually calmed down when I found out  the max amounts I would have to pay.                And....I don't care for the idea that  there are so few places that  take Medicare Advantage .   But,               I need to keep my fingers crossed that nothing major  comes up the rest of this year and  next year until April 1.     

H ope this might help somebody else..

Julie T.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: UPDATE ON DISAILIBTY /CC

One more note about  Medicare.  If you are going to go on Medicare during a year, and you want to have a Health  Savings Account, you   will only be able to   put in $$ for the proportion of the year that you are NOT on Medicare.  The  bank/credit union/etc that sets up your HSA  will  know what the formula is to determine the amount you can deposit into the account.

In my case, I set up the account back  in Jan or FEb, before I knew that I was going to be on Medicare as of July 1.  So, I will need to  contact the  credit union and ask if I need to do anything or if since I did it before finding out that I was going to be on Medicare in July, I  can leave the amount alone.  I have been  not using the account for now...until I get questions asked and get it straightened out.   

More to come as I get info.

Julie T.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: UPDATE ON DISAILIBTY /CC

curious what all did you have to send in for social security? i filled the web form out and it said to mail in medical records. like all of them?!

Re: UPDATE ON DISAILIBTY /CC

deadlift,

I actually made an appointment with a SS representative locally and spoke with him in person.  It was far simpler.  All I had to do is give him the name of my doctors and their contact info, my  cancer diagnosis as well as any other major illnesses I think, and then he had a lot of basic question answer stuff.   I signed something giving them permission to talk with my doctors, so I didn't have to personally arrange for anything.   

I can't imagine that they need ALL medical records....but that's where it was really handier to do this in person than on the website.  There is probably some phone number you can call, or a place on the website with an email contact to ask this kind of question, but I can see it dragging out.   Mine was started late May and approved in July, but I personally didn't have to do anything after meeting with the guy in the office in May.

I guess Since you started on the web, you might try calling or emailing SS to ask just what they mean exactly by medical records....just what specifically they want.  I am pretty sure they'd want anything having to do with The CC.....when symptoms showed up.....because they do use that as part of the waiting time before getting payments started.   The guy I spoke to wanted to know ANYthing that looked like it might be symptoms....but as you know, there aren't usually any untill things get really serious and you get diagnosed, so in our cancer/disease, that isn't super helpful, but in my case, I didn't apply for disability until 3 months after surgery (and thus 4 months after the tumor was found .

Julie

Julie

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: UPDATE ON DISAILIBTY /CC

Iowagirl wrote:

deadlift,

I actually made an appointment with a SS representative locally and spoke with him in person.  It was far simpler.  All I had to do is give him the name of my doctors and their contact info, my  cancer diagnosis as well as any other major illnesses I think, and then he had a lot of basic question answer stuff.   I signed something giving them permission to talk with my doctors, so I didn't have to personally arrange for anything.   

I can't imagine that they need ALL medical records....but that's where it was really handier to do this in person than on the website.  There is probably some phone number you can call, or a place on the website with an email contact to ask this kind of question, but I can see it dragging out.   Mine was started late May and approved in July, but I personally didn't have to do anything after meeting with the guy in the office in May.

I guess Since you started on the web, you might try calling or emailing SS to ask just what they mean exactly by medical records....just what specifically they want.  I am pretty sure they'd want anything having to do with The CC.....when symptoms showed up.....because they do use that as part of the waiting time before getting payments started.   The guy I spoke to wanted to know ANYthing that looked like it might be symptoms....but as you know, there aren't usually any untill things get really serious and you get diagnosed, so in our cancer/disease, that isn't super helpful, but in my case, I didn't apply for disability until 3 months after surgery (and thus 4 months after the tumor was found .

Julie

Julie

Thanks! I think we have it sorted out. The biggest hurdle really was it didn't seem like my wife had much interest in pursuing it, or the paper work. I filled everything online first, with all the information I had, doctors, treatments etc etc. First diagnosis was after easter so that ought to cover the waiting time I think. We used the medical records from her hospital discharge that had everything on it.

I agree that going in person would have been more insightful but my wife wanted nothing to do with appointments or waiting in line etc. I've got all the papers mailed out as of last week so we will see. It should be pretty straight forward at this point. Though they said it can take 60 days to process to a decision.

Thanks again!

Re: UPDATE ON DISAILIBTY /CC

Yes, it was 60 days pretty much to hear back from SS about the acceptance they said, but it's pretty much a formality once they see the medical work....a guaranteed acceptance, since the cancer diagnosis for CC is on their list of special diseases that don't require the usualwaiting period.  I think mine came through a little faster than the 60 days....but then you still have to wait for the first check to be distributed.  So glad I did it. 

I understand about your wife not wanting to go to an appointment and sit.  At the time I went, I was two months past surgery and just before starting chemo and the blood clots.   I wouldn't have wanted to go sit at an appointment after that either.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: UPDATE ON DISAILIBTY /CC

I think she didn't want to acknowledge the cancer nor the ability to get disability. she doesn't  think it's even worth the money i think, given the short conversations we've had on it. I saw where someone had a response in 2 weeks. always something to wait for i guess

Re: UPDATE ON DISAILIBTY /CC

And she's approved. First check Oct 12.

wow.

Re: UPDATE ON DISAILIBTY /CC

Congratulations, dear deadlift, your persistence paid off. 

A little tidbit:  Prior to 2006  cholangiocarcinoma patients had to fight for  benefits.  This prompted a Texas attorney to challenge the Social Security Administration and with the help of the Cholangiocarcinoma Foundation the rulings changed resulting in  the automatic granting of  Social Security benefits for our patient population.   

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: UPDATE ON DISAILIBTY /CC

marions wrote:

Congratulations, dear deadlift, your persistence paid off. 

A little tidbit:  Prior to 2006  cholangiocarcinoma patients had to fight for  benefits.  This prompted a Texas attorney to challenge the Social Security Administration and with the help of the Cholangiocarcinoma Foundation the rulings changed resulting in  the automatic granting of  Social Security benefits for our patient population.   

Hugs,
Marion

Well good work for the foundation. I actually noticed benefits and check date on the web site before they sent confirmation which i found odd. I
Thanks!

Re: UPDATE ON DISAILIBTY /CC

I was not aware either of the work of the Foundation in helping our patient population gain their SS disability benefits.  Thank you CC Foundation for the work you do in our behalf.

Julie T.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.