SSI?

[dukeblue1206]

Yes JennifersHope I do go to UNC. Have been going there in the adult clinic since 2001. Before that I was at Duke peds until I turned about 15, then was seen locally by a Pulmo Dr. until I decided to go to UNC. My health was getting worse and I didn't feel the local Pulmo Dr was up to date on things like he should be. Glad I made the switch to UNC cause they have been great!!

 

[dukeblue1206]

Yes JennifersHope I do go to UNC. Have been going there in the adult clinic since 2001. Before that I was at Duke peds until I turned about 15, then was seen locally by a Pulmo Dr. until I decided to go to UNC. My health was getting worse and I didn't feel the local Pulmo Dr was up to date on things like he should be. Glad I made the switch to UNC cause they have been great!!

 

[julie]

It is worth nothing that the Continued Medicaid Eligibility (Section 1619(B)) applies only to SSI recipients and not ssdi recipients.

This is because those on SSDI are eligible to receive medicare 24 months after being on SSDI, although this is such a crappy thing because not everyone has been on SSDI for the 24 months and gets medicare

 

[julie]

It is worth nothing that the Continued Medicaid Eligibility (Section 1619(B)) applies only to SSI recipients and not ssdi recipients.

This is because those on SSDI are eligible to receive medicare 24 months after being on SSDI, although this is such a crappy thing because not everyone has been on SSDI for the 24 months and gets medicare

 

[julie]

Jennifer, if you are on SSI as well as SSDI then you would have had to apply for both (and the application for SSI is not online), received separate decision letters on both, and in *most* circumstances, would be issue 2 separate payments each month for them.

Have you not been on SSDI long enough to receive medicare?

 

[julie]

Jennifer, if you are on SSI as well as SSDI then you would have had to apply for both (and the application for SSI is not online), received separate decision letters on both, and in *most* circumstances, would be issue 2 separate payments each month for them.

Have you not been on SSDI long enough to receive medicare?

 

[lilmac1177]

i didn't know you can get SSI and SSDI at the same time ... i was on SSI for several years, then when i earned enuff work credits it kicked me into SSDI. also, i had to wait a year after beginning to receive SSDI to be eligible for Medicare.

 

[lilmac1177]

i didn't know you can get SSI and SSDI at the same time ... i was on SSI for several years, then when i earned enuff work credits it kicked me into SSDI. also, i had to wait a year after beginning to receive SSDI to be eligible for Medicare.

 

[julie]

If your SSDI payment is low enough (well under $650 a month) then you can also collect SSI, however it's rare that peoples SSDI is that low.

It should have been 24 months from the time you were eligible for SSDI, not a year... you got lucky! http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/155/kw/disability%20and%20medicare

Differences between SSI and SSDI: http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/245/kw/SSDI%20and%20medicare

 

[julie]

If your SSDI payment is low enough (well under $650 a month) then you can also collect SSI, however it's rare that peoples SSDI is that low.

It should have been 24 months from the time you were eligible for SSDI, not a year... you got lucky! http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/155/kw/disability%20and%20medicare

Differences between SSI and SSDI: http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/245/kw/SSDI%20and%20medicare

 

[lilmac1177]

oops! it actually may have been two years, but i could have been thinking a year because how on Earth i got by for two years with CF and NO health insurance seems crazy now! LOL

 

[lilmac1177]

oops! it actually may have been two years, but i could have been thinking a year because how on Earth i got by for two years with CF and NO health insurance seems crazy now! LOL

 

[semnle34]

Was anyone been denied after applying their first time? I am starting the process now and am so nervous of receiving a denial. I am putting my whole family's finances in jeopardy by taking the chance of stopping work to file for the disability. I have been working for the past 15 years so I believe I will qualify for SSDI. Despite that I still have no idea what kind of compensation I will receive. I am also a single mother with a three year old daughter so the thought of waiting six months to a year without any income is freaking me out. Any suggestions or sharing of your experiences would be helpful. Thank you to everyone for posting their stories. It really does help.

Kristen-29 yr old female, DF508, mother of 3 yr old daughter {Non-CF}, NTMB {currently on 6 weeks course of IV meds to treat it} DX at 18 months Miami Childrens Hospital, currenlty receiving care at Joe Dimaggio Children's Hospital in Hollywood, Florida

 

[semnle34]

Was anyone been denied after applying their first time? I am starting the process now and am so nervous of receiving a denial. I am putting my whole family's finances in jeopardy by taking the chance of stopping work to file for the disability. I have been working for the past 15 years so I believe I will qualify for SSDI. Despite that I still have no idea what kind of compensation I will receive. I am also a single mother with a three year old daughter so the thought of waiting six months to a year without any income is freaking me out. Any suggestions or sharing of your experiences would be helpful. Thank you to everyone for posting their stories. It really does help.

Kristen-29 yr old female, DF508, mother of 3 yr old daughter {Non-CF}, NTMB {currently on 6 weeks course of IV meds to treat it} DX at 18 months Miami Childrens Hospital, currenlty receiving care at Joe Dimaggio Children's Hospital in Hollywood, Florida

 

[semnle34]

Was anyone been denied after applying their first time? I am starting the process now and am so nervous of receiving a denial. I am putting my whole family's finances in jeopardy by taking the chance of stopping work to file for the disability. I have been working for the past 15 years so I believe I will qualify for SSDI. Despite that I still have no idea what kind of compensation I will receive. I am also a single mother with a three year old daughter so the thought of waiting six months to a year without any income is freaking me out. Any suggestions or sharing of your experiences would be helpful. Thank you to everyone for posting their stories. It really does help.

Kristen-29 yr old female, DF508, mother of 3 yr old daughter {Non-CF}, NTMB {currently on 6 weeks course of IV meds to treat it} DX at 18 months Miami Childrens Hospital, currenlty receiving care at Joe Dimaggio Children's Hospital in Hollywood, Florida

 

[semnle34]

Was anyone been denied after applying their first time? I am starting the process now and am so nervous of receiving a denial. I am putting my whole family's finances in jeopardy by taking the chance of stopping work to file for the disability. I have been working for the past 15 years so I believe I will qualify for SSDI. Despite that I still have no idea what kind of compensation I will receive. I am also a single mother with a three year old daughter so the thought of waiting six months to a year without any income is freaking me out. Any suggestions or sharing of your experiences would be helpful. Thank you to everyone for posting their stories. It really does help.

Kristen-29 yr old female, DF508, mother of 3 yr old daughter {Non-CF}, NTMB {currently on 6 weeks course of IV meds to treat it} DX at 18 months Miami Childrens Hospital, currenlty receiving care at Joe Dimaggio Children's Hospital in Hollywood, Florida

 

[bethylove]

I don't want to stress you out, but I thought you should hear how it sometimes goes. I got denied-- twice. I didn't fit the criteria of lung function so I was denied (although my case as a whole met the bill but rules are rules and that's one of the only numbers they look at).

It took about 6 months for my first denial to come in. Then we appealed that decision. We waited another 9 months or so for another denial, then we appealed that. After our second appeal (and second denial) you move up to a court hearing. A little after 2.5 years after applying I had my court date. I sat in front of the judge for maybe 5 minutes. Just long enough for a doctor to read some highlighted info from my massive chart. She said "thank you doctor ___ that's all I need. Elizabeth we'll be paying your case." 5 minutes. That's all it took for her to see that CF is a whole bodied disease and not just one number on a page.

I did get a decent chunk of back pay (for those almost 3 years) and my health benefits started right away.

Now I applied when I was about 18 and a half. Mainly because I hated college but you couldn't stay on your parent's insurance unless you were a fulltime student. Being without health insurance was a scary thought! So we applied. As soon as I was rewarded (and subsequently stopped school) Obama care changed the age to 26. Go figure.

If you're afraid of being denied go into it with a lawyer. I didn't get a lawyer until after my second denial. I'm not sure they did much for me but I think if I had to do it again I'd go in with a lawyer from the get-go. Good luck!

 

[bethylove]

I don't want to stress you out, but I thought you should hear how it sometimes goes. I got denied-- twice. I didn't fit the criteria of lung function so I was denied (although my case as a whole met the bill but rules are rules and that's one of the only numbers they look at).

It took about 6 months for my first denial to come in. Then we appealed that decision. We waited another 9 months or so for another denial, then we appealed that. After our second appeal (and second denial) you move up to a court hearing. A little after 2.5 years after applying I had my court date. I sat in front of the judge for maybe 5 minutes. Just long enough for a doctor to read some highlighted info from my massive chart. She said "thank you doctor ___ that's all I need. Elizabeth we'll be paying your case." 5 minutes. That's all it took for her to see that CF is a whole bodied disease and not just one number on a page.

I did get a decent chunk of back pay (for those almost 3 years) and my health benefits started right away.

Now I applied when I was about 18 and a half. Mainly because I hated college but you couldn't stay on your parent's insurance unless you were a fulltime student. Being without health insurance was a scary thought! So we applied. As soon as I was rewarded (and subsequently stopped school) Obama care changed the age to 26. Go figure.

If you're afraid of being denied go into it with a lawyer. I didn't get a lawyer until after my second denial. I'm not sure they did much for me but I think if I had to do it again I'd go in with a lawyer from the get-go. Good luck!

 

[semnle34]

Thank you Bethylove....I just spoke to Beth from the CF Legal Team. I am hoping she will be able to take on my case. I spoke to a local attorney and they advised they will take my case on if she doesnt. I am anticipating the two denials. I was already prepped lol. I just dont understand why this has to be such a daunting process. Case and point CF is difficult to deal with, we shouldnt have to throw in working a job on top of the job of taking care of ourselves. Ive been working for the last 15 years and have contributed now its time for me to focus on my health. Any personal experiences are helpful. Thanks to all.

 

[semnle34]

Thank you Bethylove....I just spoke to Beth from the CF Legal Team. I am hoping she will be able to take on my case. I spoke to a local attorney and they advised they will take my case on if she doesnt. I am anticipating the two denials. I was already prepped lol. I just dont understand why this has to be such a daunting process. Case and point CF is difficult to deal with, we shouldnt have to throw in working a job on top of the job of taking care of ourselves. Ive been working for the last 15 years and have contributed now its time for me to focus on my health. Any personal experiences are helpful. Thanks to all.