question about SSI?

T

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 
T

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 
T

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 
T

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 
T

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.
<br />
<br />I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!
<br />
<br />Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 
J

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 
J

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 
J

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 
J

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 
J

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.
<br />
<br />They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.
<br />
<br />My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.
<br />
<br />Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.
<br />
<br />Good Luck
 
T

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.
<br />
<br />i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 
K

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 
K

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 
K

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 
K

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!
<br />
<br />Mom of katlynn 9 yr. old CFer
 
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