My employer's disability insurance provider has a policy that if they expect a person to be on disability longer than one year, they recommend submitting a Social Security disability application. It seems like people with multiple myeloma almost always are approved.
I've gotten to that point with the disability provider, Unum, and they are moving forward with that process. They even contract with an advocacy group that will guide you through the process, file paperwork for you, and basically act as your attorney. The group is called "Advocate".
Obviously, Unum would like for me to go on SSDI because it means they could pay me less, so, although it sounds like a good idea, and I have no specific or particular reason to hesitate, I take their advice with a grain of salt. Between my employer-provided disability policy and a private policy I bought years ago, we are able to pay all our bills and maintain a satisfactory lifestyle without SSDI.
Can you think of any downsides to going on SSDI?
Also, has anyone had experience with Advocate?
Thanks,
Tracy
Forums
6 posts
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Downsides to SSDI? Experience with Advocate?
Hi Tracy,
I've managed the day-to-day affairs of a mentally disabled relative for about 15 years now and work quite a bit with the SSA as a result of this. We came close to being able to get my relative on to SSDI, but were only able to get SSI as well as what's known as Medi-Medi (it's a long, involved story that I won't bore you with here).
I ended up doing the entire process with SSA myself and did not use an advocate. It was a lot of work, required a lot of homework, and the whole process definitely tested my patience. In retrospect, things would have been easier if I had enlisted an advocate.
However, my experience is that you WILL end up likely having to engage with the SSA on an ongoing basis and not just when you initially apply. To that end, I would not relegate tasks to an advocate without fully understanding what they are doing on your behalf. I say this because having the first-hand knowledge of how to deal with the SSA will come in handy down the road. SSA WILL screw up on a payment or ask you to re-qualify or will do something completely unexpected. Basically Gilda Radner's rule that "It's always something" applies when it comes to Social Security disability benefits.
You should also be clear that, if you go on to SSDI, that you won't get on to Medicare for two years. So, you need to be clear what your health coverage options will be during that time. However, I believe that you can keep active any marketplace insurance that you might have used during the 2-year waiting period when you do finally qualify for Medicare, which might be a nice doubly-insured situation to be in. At least, I "believe" it currently works that way ever since the ACA became law.
I've managed the day-to-day affairs of a mentally disabled relative for about 15 years now and work quite a bit with the SSA as a result of this. We came close to being able to get my relative on to SSDI, but were only able to get SSI as well as what's known as Medi-Medi (it's a long, involved story that I won't bore you with here).
I ended up doing the entire process with SSA myself and did not use an advocate. It was a lot of work, required a lot of homework, and the whole process definitely tested my patience. In retrospect, things would have been easier if I had enlisted an advocate.
However, my experience is that you WILL end up likely having to engage with the SSA on an ongoing basis and not just when you initially apply. To that end, I would not relegate tasks to an advocate without fully understanding what they are doing on your behalf. I say this because having the first-hand knowledge of how to deal with the SSA will come in handy down the road. SSA WILL screw up on a payment or ask you to re-qualify or will do something completely unexpected. Basically Gilda Radner's rule that "It's always something" applies when it comes to Social Security disability benefits.
You should also be clear that, if you go on to SSDI, that you won't get on to Medicare for two years. So, you need to be clear what your health coverage options will be during that time. However, I believe that you can keep active any marketplace insurance that you might have used during the 2-year waiting period when you do finally qualify for Medicare, which might be a nice doubly-insured situation to be in. At least, I "believe" it currently works that way ever since the ACA became law.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Downsides to SSDI? Experience with Advocate?
As a PT, I was treating a young woman who was on disability from work for an extended period of time. After she had been on long term disability for a year, her disability insurance company required her to apply for SSDI and helped her apply. I don't know which disability insurance company she had her policy through. They were extremely helpful and explained things to her very well. She qualified for SSDI and, because of the length of time that she had been unable to work, her date of disability was set at a date that made her automatically eligible for Medicare benefits. She had been out on FMLA for 6 months, using accrued sick and vacation time, then short term disability for 6 months followed by long term disability for 12 months.
During her first year on SSDI, she recovered from her injury enough that she was able to begin to work a few hours per week. Her insurance company continued to assist her with managing interactions with SSA so that she continued to receive benefits even though she was able to work some. Unfortunately, she hasn't been able to physically manage more than a few hours of work a week over the last several years. But the insurance company has continued to assist her along the way.
My experiences with UNUM when I've had to use my short term disability in the past has been very positive. Just make sure that you know what your rights are with the SSA even though Advocate may be assisting you through the process.
Nancy in Phila
During her first year on SSDI, she recovered from her injury enough that she was able to begin to work a few hours per week. Her insurance company continued to assist her with managing interactions with SSA so that she continued to receive benefits even though she was able to work some. Unfortunately, she hasn't been able to physically manage more than a few hours of work a week over the last several years. But the insurance company has continued to assist her along the way.
My experiences with UNUM when I've had to use my short term disability in the past has been very positive. Just make sure that you know what your rights are with the SSA even though Advocate may be assisting you through the process.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Downsides to SSDI? Experience with Advocate?
Hi Tracy,
I have been on SSDI plus employer provided longterm disability since November 2013. The long-term insurance carrier required that I apply and capped my monthly benefit MINUS the SSDI payment each month. They continually monitor to make certain that I am not given any additional Social Security funds including small cost of living increases (which could be subtracted from what is owed to me each month.)
The downside for me is as follows:
I have been on SSDI plus employer provided longterm disability since November 2013. The long-term insurance carrier required that I apply and capped my monthly benefit MINUS the SSDI payment each month. They continually monitor to make certain that I am not given any additional Social Security funds including small cost of living increases (which could be subtracted from what is owed to me each month.)
The downside for me is as follows:
- The already mentioned 24 month waiting period for Medicare,
- The slight inconvenience of a rather lengthy self assessment form that must be completed annually along with validation from my physician that I am in fact, still disabled.
- Depending on how much money you receive, a portion of your benefits may be taxable. I was a high income earner, so even with SSDI and LTD, my tax burden is considerable, forcing me to pay estimated taxes throughout the year in order to avoid owing on April 15th!
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Teresa C. - Name: Teresa C.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 51
Re: Downsides to SSDI? Experience with Advocate?
My husband's situation is different from yours, but the short story is, we applied for SSDI and the process was really not that difficult for us. However, his disability was not related to multiple myeloma, and he had no disability thru his work. We had the standard 6 month wait for it to start, but you would already have that part covered.
If your employer insurance picks up after the SSDI to keep you at your current income level, I can't see a downside. And while it might be nice to have someone help navigate the process, we did not find the process all that difficult. But, again, with an advocate behind you, you might avoid the initial first denial that many seem to have with SSDI. We didn't have that, but again, very different medical circumstances. Myeloma came later for him / us.
If your employer insurance picks up after the SSDI to keep you at your current income level, I can't see a downside. And while it might be nice to have someone help navigate the process, we did not find the process all that difficult. But, again, with an advocate behind you, you might avoid the initial first denial that many seem to have with SSDI. We didn't have that, but again, very different medical circumstances. Myeloma came later for him / us.
Re: Downsides to SSDI? Experience with Advocate?
Thanks for all the information, guys! This is very helpful.
Does anyone know if there is any allowance in SSDI for a few hours a weeks of low-key work? Clearly I can't go back to my regular job, which is an ER doctor - too much immunosuppression and fatigue. But I might be able to handle a few hours a week of administrative tasks or case reviews or something like that. However, I am not going to agree to do some little tasks like that if it will threaten all my other disability.
Another question I've had is how much scrutiny your activities have come under while on disability? My Mom told me a story about a disability company that sent a private detective to follow the patient around for several days to try to catch her doing something that would allow them to discontinue payments. This seems unusual and quite extreme. Have you heard of situations like this?
Does anyone know if there is any allowance in SSDI for a few hours a weeks of low-key work? Clearly I can't go back to my regular job, which is an ER doctor - too much immunosuppression and fatigue. But I might be able to handle a few hours a week of administrative tasks or case reviews or something like that. However, I am not going to agree to do some little tasks like that if it will threaten all my other disability.
Another question I've had is how much scrutiny your activities have come under while on disability? My Mom told me a story about a disability company that sent a private detective to follow the patient around for several days to try to catch her doing something that would allow them to discontinue payments. This seems unusual and quite extreme. Have you heard of situations like this?
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
6 posts
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