SSI for preemies under 1200 grams

Anyone gone through this proces with Social Security that can tell me what to expect??

 

My girls get SSI. They were born at 26 weeks. The Social worker at the hospital filled out a form stating thier weights at birth. I took the paper to the social security office. They gave me a folder full of papers to fill out and a date to come back. I can't remember how long it took after that to get the first check. They paid me $30 a month per child while they were in the NICU and then it went up after they were released. They are still currently getting it now. If you need to know anything else, just let me know and I will help as best as I can.

 

Both of mine qualified while they were in the NICU, but not after they came home, they re-evaluate once they come home and we didn't qualify then. When they come home it's based on your income.

I got a call from the Social Security office, the NICU called them. It was a long conversation with the first phone call, and I mean close to an hour. That was pretty much it, just a few phone calls after that.

 

I was told something about the $30 and a possible $560 or so depending on quailfying income. We make less that 40k a year combined so we'll see how that works when the girls come home. Only one of the girls was below 1200 grams. OMG and hour that's a long phone call. Wish me luck, lord knows we could use the extra cash.
How long to you continue to get the monthly payment??

 

My girls are 2 and still getting it. Of course the amount has gone down because of my husband's income but since we are a one income family and both girls are considered disabled, I guess that is why. I am waiting for the day they are re-evaluated. I have no idea when that will be. I am just happy they are still getting it. I don't think I spent that much time on the phone, all of mine was mostly in person.

 

QUOTE(Kristi F. @ Aug 9 2007, 05:09 PM) [snapback]363144[/snapback]
My girls are 2 and still getting it. Of course the amount has gone down because of my husband's income but since we are a one income family and both girls are considered disabled, I guess that is why. I am waiting for the day they are re-evaluated. I have no idea when that will be. I am just happy they are still getting it. I don't think I spent that much time on the phone, all of mine was mostly in person.



Wow, Kristi you are lucky your girls are still getting it. Ours stopped the moment they came home from the NICU.

But while in the NICU they each got $30/month and then around $500 at discharge, and then it stopped.

 

I know it does vary by state but for PA you qualified if:

Babies weighed less than 1200 grams
They stayed in the hospital for more than 30 days past their birthdate

Mine both got it while in the nicu. But stopped once we got discharged (did get a huge paycheck once they got out!) My social worker was sooo awesome and did almost all the work for us and I just had one phone call...can't remember how long. But once they qualify for ssi, you automatically qualify for WIC and medicare. So we got like free milk, cereal, cheese and stuff like that. And my older son also qualified bc he was under the age of 5. And I got extra stuff bc I was breastfeeding. That too stopped once the SSI stopped. We figure if anything the $30 a month per baby was covering gas and food while in the hospital. Although Hershey Med Center (where my babies were born) also gave me a coupon for a free meal once a day at the hospital bc I was pumping for the babies...that helped too!!!

Good luck!!

 

QUOTE(summerfun @ Aug 9 2007, 04:44 PM) [snapback]363195[/snapback]
Wow, Kristi you are lucky your girls are still getting it. Ours stopped the moment they came home from the NICU.

But while in the NICU they each got $30/month and then around $500 at discharge, and then it stopped.


I am so glad too. I don't know what we would do without it. We are a one income household so I guess between that and being a family of 5 we were in the right bracket.

 

Well the call was quick and easy, but they didn't ask all the tough question till the girls have come home. Then we will see if we qualify for continued help.

 

QUOTE(Kristi F. @ Aug 9 2007, 11:23 PM) [snapback]363590[/snapback]
I am so glad too. I don't know what we would do without it. We are a one income household so I guess between that and being a family of 5 we were in the right bracket.



We're a one income family of 5 too, but we don't qualify. I guess, like everything else, it varies by state.

 

I guess I am curious about this, so please, no offense to anyone...Is the reason they offer SSI to such low birth weight babies is b/c they run a higher risk of complications? or is b/c they *will* have some limitations/development delays/physical delays, etc and to such a degree that will be disabiling?

I remember hearing about this when my girls were in the NICU b/c there were much smaller babies then they were and I didnt understand why then either.

 

Actually...in Pa, you can continue to get Medicaid and WIC for the kids for a while after they leave the hospital. You officially have to be denied by SSI, take that denial to Welfare, then they'll sign you up. Some people call it the "loophole" in our state. Our kids still get Medicaid--there are no income limits. I think they get it till they are 3, but am not sure. To answer your question (and I'm not offended!)...yes...probably because they have higher complications and higher likelihood of delays. If nothing else...most preemies receive RSV shots the first year or 2, and the copays on those drugs can be insane. Our first year, we switched from an HMO to an 80%/20% PPO and our monthly copay was $800--those types of drugs aren't covered under the 'pharmacy' section of insurance. So...the Medicaid really saved us, and to be honest...we make a good wage, but that's still a big bill every month. Imagine adding on costs for delays/complications--it gets crazy.

As for why they get it in the hospital...my hospital bill for about 12 weeks in the nicu was about $300,000 for EACH child. I had a great HMO that covered 100%, but imagine if you had to pay at an 80%/20% insurance rate, or even out of pocket. That's my understanding as to why--so it doesn't bankrupt the parent and ensures the child gets proper care. Also...you can receive SSI benefits for many illnesses, and it's not income based, although...often those illnesses preclude you from working. So...I see it as kinda like that.

HTH!
-penny

 

QUOTE(angie7 @ Aug 10 2007, 09:49 PM) [snapback]364555[/snapback]
I guess I am curious about this, so please, no offense to anyone...Is the reason they offer SSI to such low birth weight babies is b/c they run a higher risk of complications? or is b/c they *will* have some limitations/development delays/physical delays, etc and to such a degree that will be disabiling?

I remember hearing about this when my girls were in the NICU b/c there were much smaller babies then they were and I didnt understand why then either.



I don't really know. Maybe they *assume* very low birth weight babies will be in the hospital longer therefore having larger bills and such. And might possibly have delays and such. I really don't know.

But obviously not all extremely low birth weight babies have limitations/development delays/physical delays etc.

 

QUOTE(pdxpeach @ Aug 10 2007, 12:03 AM) [snapback]363627[/snapback]
Well the call was quick and easy, but they didn't ask all the tough question till the girls have come home. Then we will see if we qualify for continued help.



Glad it was quick. That was totally opposite of my phone call from them. :unknw:

 

QUOTE
Actually...in Pa, you can continue to get Medicaid and WIC for the kids for a while after they leave the hospital. You officially have to be denied by SSI, take that denial to Welfare, then they'll sign you up. Some people call it the "loophole" in our state. Our kids still get Medicaid--there are no income limits. I think they get it till they are 3, but am not sure.


Yeah, I forgot that part. The SSI was cut off immediately bc of our income but we were allowed on medicaid and WIC until they were a year old and deemed "healthy". While I was very happy to have two healthy children...I was said that the medicaid was gone bc Mitchell still has had problems requiring surgery and more drs....we tried to get him put back on it but it seemed like too much work..

 

QUOTE(stumpstress @ Aug 11 2007, 02:52 AM) [snapback]364619[/snapback]
As for why they get it in the hospital...my hospital bill for about 12 weeks in the nicu was about $300,000 for EACH child. I had a great HMO that covered 100%, but imagine if you had to pay at an 80%/20% insurance rate, or even out of pocket. That's my understanding as to why--so it doesn't bankrupt the parent and ensures the child gets proper care. Also...you can receive SSI benefits for many illnesses, and it's not income based, although...often those illnesses preclude you from working. So...I see it as kinda like that.

HTH!
-penny


Thanks that does explain it a little better. I understand what you are saying but larger babies can also have extended stays and costs hundreds of thousands of dollars, I guess I am just asking why the weight limit? My girls were right around 3lbs (I dont remember grams but I know over 1200, I think around 1500??) and were in the hospital for almost 8 weeks and their medical bills were close to $300,000 for both. While I understand smaller babies requiring more, and being in the hospital longer but my girls could have easily bankrupted their parents as well. Luckily we have very good ins that paid 100% but not everyone has that. Guess I just dont get the weight limit restrictions. I would think it *should* be any child that needs an extended stay for any newborn or preemie whether they be 12 weeks early or 2 weeks early, kwim?

 

QUOTE(angie7 @ Aug 11 2007, 02:12 PM) [snapback]365084[/snapback]
Thanks that does explain it a little better. I understand what you are saying but larger babies can also have extended stays and costs hundreds of thousands of dollars, I guess I am just asking why the weight limit? My girls were right around 3lbs (I dont remember grams but I know over 1200, I think around 1500??) and were in the hospital for almost 8 weeks and their medical bills were close to $300,000 for both. While I understand smaller babies requiring more, and being in the hospital longer but my girls could have easily bankrupted their parents as well. Luckily we have very good ins that paid 100% but not everyone has that. Guess I just dont get the weight limit restrictions. I would think it *should* be any child that needs an extended stay for any newborn or preemie whether they be 12 weeks early or 2 weeks early, kwim?



If I am not mistaken I *think* you can apply for SSI for any premature baby with a hospital stay.

I hope I am totally not making that up and totally wrong about it. I had no idea about SSI until we got a call from them.

 

QUOTE
I guess I am just asking why the weight limit?


I assume they must have taken the average length of stay for babies at different weights and just made a cut-off then. Babies less then 1200grams probably on average have more problems than babies over that weight...but not always...

 

QUOTE(angie7 @ Aug 11 2007, 01:12 PM) [snapback]365084[/snapback]
Thanks that does explain it a little better. I understand what you are saying but larger babies can also have extended stays and costs hundreds of thousands of dollars, I guess I am just asking why the weight limit? My girls were right around 3lbs (I dont remember grams but I know over 1200, I think around 1500??) and were in the hospital for almost 8 weeks and their medical bills were close to $300,000 for both. While I understand smaller babies requiring more, and being in the hospital longer but my girls could have easily bankrupted their parents as well. Luckily we have very good ins that paid 100% but not everyone has that. Guess I just dont get the weight limit restrictions. I would think it *should* be any child that needs an extended stay for any newborn or preemie whether they be 12 weeks early or 2 weeks early, kwim?


I could be wrong, but I believe that they are automatically qualified if their birth weight is 1250 grams of less (at least in California I was told it is 1250 -- my recipient twin who had severe edema didn't qualify because he had an extra 5 grams at birth although within 24 hours he had gone down well below 1200 from his edema reducing) but if they are hospitalized for 30 days, they are also automatically qualified. I think the 1250 gr rule comes from the knowledge that babies will definitely be in for the 30 days if they are this small (I would assume it is just a number chosen because they had to have a cutoff weight somewhere). I don't think it has to do with them expecting disabilities or anything else, although we all know there is a higher risk. I know there are diagnoses that also automatically qualify for SSI at birth, even if they are born term. It's got to be complicated and difficult to try to make sure those who need these benefits get them, and those who are trying to take advantage of the system can't.

 

I'll have to look into the over 1200 grams, as her sister was at 1370, but is still in the hospital with her. Might be worth the effort.