Discussion Board Forums Insurance UPDATE ON DISAILIBTY /CC

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    Thank you for sharing all your hard work


    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,


    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.

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