Everything No One Ever Told Me When I Got On Disability (SSI & SSDI)

KitCat

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Everything No One Ever Told Me When I Got On Disability

Here's a list of everything that nobody ever told me after I was approved! (click link above)

I have been slowly collecting and updating this list, as I cannot find anywhere in the entire internet (or the entire universe) where this kind of list exists.

Please share this list with anyone else you know who is on benefits. It can save you a lot of money and a lot of heartache.

This is a work in progress. If you have any ideas to improve or add to this list, please let me know. Questions are welcome. I am not an expert, but I am learning.

The first half of the list is for people who just got approved and the second half is for anyone already on disability.

Sorry to say, this is US only, I am not sure how much (if any) would apply in other countries. If you are on disability in another country, please share your ideas and suggestions here.

The list is too long to post here, so I posted it in a blog post.
 

KitCat

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"what is the difference between Medicare & Medicaid? Is one better than the other? i.e., is there one that more doctors prefer?
Do you have to apply to SSI & SSDI separately? which is more difficult to get?
thanks for writing this up.
ebethc, Today at 5:22 PM Report"

hi @ebethc,

the blog comments don't seem to allow me to tag so I am answering over here instead. :)

Great questions!

You don't get to choose what type of disability or which insurance you get... it has to do with your finances.

SSDI is for people who have worked and paid social security tax and it automatically comes with medicare.

SSI is for people who have not worked enough or not worked recently enough AND are low-income. it automatically comes with medicaid. It is less money.

Depending on your finances and work history.... some people wind up on both, and some people wind up being eligible for neither (which is rare, and sad!)

The application for SSI and SSDI is the same. SSI has one additional step, a financial interview, other than that it is the same.

Many people just apply for both and then let Social Security figure out what they are eligible for :)

Though I can certainly help you figure it out if you are interested.

Are you thinking of applying?
 

Tammy

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Several years ago when I felt like I needed home help I found out that there were different types of Medicaid. All of these years that I have had Medicaid...........I only thought there was one type. I have the type of Medicaid that doesn't cover home help! In my state there is a program called COLTS. People that need help that don't have the right type of Medicaid for home help can sign up with the COLTS program. The draw back though is that the waiting list is like several years.
 

KitCat

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Thank you Tammy. I will look up more about COLTS. I am always interested to learn more about homecare programs. Are you in this program?

Ok, looked it up. Looks like it is not called COLTS anymore, it is now centennial care community benefit.

I would love to hear your experience applying. I am in a homecare program as well and I am always trying to learn more to help others.

Several years is really long for a waiting list! Are you still on the waiting list or have you gotten into the program at this point?

I wonder if it is still that slow. A lot of these programs have expanded a lot in recent years.

@Tammy
 
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Tammy

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The first time I applied it took almost 3 years for them to call me.........by then I had a roommate that was helping me so I turned down the program. (I kicked myself for that later). The second time I applied was several yrs ago and I was told I needed to call them every 6 months which I did until one time the person I talked to said I didn't need to do that..(now I wonder if that was bad advice)............I havn't heard anything and I think this past April will have been 3 years on the waiting list. Now even if they did happen to call.........I don't need the service anymore.
 

Horizon

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If you already have SSDI but want SSI? Do you need to go through the same process of proving you are disabled? Or is this is a quick process and you just need to prove no income. Does your ssdi income count towards ssi criteria?
 

KitCat

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If you already have SSDI but want SSI? Do you need to go through the same process of proving you are disabled? Or is this is a quick process and you just need to prove no income. Does your ssdi income count towards ssi criteria?
It depends:

When was your approval for SSDI? More than twelve months ago?

How high is your SSDI check? More than $753?

Yes, SSDI income does count, the total won't be more than $753.
 

KitCat

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The first time I applied it took almost 3 years for them to call me.........by then I had a roommate that was helping me so I turned down the program. (I kicked myself for that later). The second time I applied was several yrs ago and I was told I needed to call them every 6 months which I did until one time the person I talked to said I didn't need to do that..(now I wonder if that was bad advice)............I havn't heard anything and I think this past April will have been 3 years on the waiting list. Now even if they did happen to call.........I don't need the service anymore.
Thanks so much for letting me know. I am sorry to hear that this happened. I have not heard of anyone else being on the waiting list this long without getting any services... In other states people get in one program while on the waiting list for another :( I am wondering if there is more than one program in new mexico.

But I am glad you don't need it any more. That's great.
 

KitCat

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gotcha.

I'm sorry to say that you can't get SSI if your check is that high. SSI is only for very low income.

You might be eligible for a medicare savings program. Are they taking money out of your check for medicare premiums each month?
 

PennyIA

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The first time I applied it took almost 3 years for them to call me.........by then I had a roommate that was helping me so I turned down the program. (I kicked myself for that later). The second time I applied was several yrs ago and I was told I needed to call them every 6 months which I did until one time the person I talked to said I didn't need to do that..(now I wonder if that was bad advice)............I havn't heard anything and I think this past April will have been 3 years on the waiting list. Now even if they did happen to call.........I don't need the service anymore.
Seems like giving people the run-around is a great way to reduce costs. sigh
 

Tammy

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Ok, looked it up. Looks like it is not called COLTS anymore, it is now centennial care community benefit.
I was never contacted that the program had changed........perhaps that's why I never got called (I had the phone interview with COLT)
I might have needed to do an initial interview with centennial care?????/ Oh Well.
 

KitCat

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I was never contacted that the program had changed........perhaps that's why I never got called (I had the phone interview with COLT)
I might have needed to do an initial interview with centennial care?????/ Oh Well.
damn! well, the important thing is it worked out in the end! if you are well enough to not need the program anymore that's fabulous.
 

Tammy

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I was never contacted that the program had changed........perhaps that's why I never got called.
I might have needed to do an initial interview with centennial care?????/ Oh Well.
damn! well, the important thing is it worked out in the end! if you are well enough to not need the program anymore that's fabulous.
Thanks KitCat............but I do wonder how many other's ended up not getting help because of the change.
 

Billt

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KitCat, I know this is old thread but this is where I am now with my son. Just approved for ssdi and looks like they will be taking money out each month for part B and he will have to pay for part D. Between these 2 it looks like it will take a HUGE part of his check. I am looking into saving programs that may help. Any good suggestions ?

Thanks again .. Bill
 
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KitCat, I know this is old thread but this is where I am now with my son. Just approved for ssdi and looks like they will be taking money out each month for part B and he will have to pay for part D. Between these 2 it looks like it will take a HUGE part of his check. I am looking into saving programs that may help. Any good suggestions ?

Thanks again .. Bill
In can't recall, Is your son on MediCaid? If so, they may pay the monthly premium for Part B (original MediCare). Regarding part D, I don't know what your sons requirements are for Rx? There are many plans, some are inexpensive.

I spent weeks shopping and comparing plans, it's was overwhelming.
 
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Billt

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Here in Louisiana there is something called expanded Medicaid. We actually finally just got him on this. This is a program that offers Medicaid if you are under the poverty level ( which he is ).
I am trying to get more local info, but it's harder than pulling teeth to get an answer. Everywhere I call just gives me another number to call. One of the problems is he has a couple of dollars in the banks from working before he got sick and seems to get any help here you need to be completely broke.

He does take a few meds, but of course that can change

It is overwhelming !! Thanks for the help
 
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Here in Louisiana there is something called expanded Medicaid. We actually finally just got him on this. This is a program that offers Medicaid if you are under the poverty level ( which he is ).
I am trying to get more local info, but it's harder than pulling teeth to get an answer. Everywhere I call just gives me another number to call. One of the problems is he has a couple of dollars in the banks from working before he got sick and seems to get any help here you need to be completely broke.

He does take a few meds, but of course that can change

It is overwhelming !! Thanks for the help
Did you try contacting Social Security? From my understand SS is the over arching gate keeper and they are supposed to coordinate receiving payments from the state. If your state agrees to pay the monthly MediCare premium, you will receive the back pay (retroactive) from SS.

MediCaid qualification policies may differ from state to state; I am not familiar with Louisiana.
 

Billt

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Did you try contacting Social Security? From my understand SS is the over arching gate keeper and they are supposed to coordinate receiving payments from the state. If your state agrees to pay the monthly MediCare premium, you will receive the back pay (retroactive) from SS.
I did call them. All they can tell me over the phone is that he is entitled to Medicare and when it started. They are able to tell me they are taking out back months premiums from when he became eligible. Said to contact state for any other programs. Also if i want to go in and talk with them, I just go in and take a number. Can't make an appointment.
Going to try to do this as soon as possible but limited time since I work during the day.

I'll keep trying to get info from the state. Thanks again
 
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I did call them. All they can tell me over the phone is that he is entitled to Medicare and when it started. They are able to tell me they are taking out back months premiums from when he became eligible. Said to contact state for any other programs. Also if i want to go in and talk with them, I just go in and take a number. Can't make an appointment.
Going to try to do this as soon as possible but limited time since I work during the day.

I'll keep trying to get info from the state. Thanks again
Sorry it's so tough right now. Wish I could be more help.