SSI/Disability

[RUDYandMOM]

Hello All,
My name is Kimberly and my son Rudy was born with pulminary atrisia, trans postition and a large VSD. He is 16months now and doing great. In Sept. he had a cath done with the intent of stretching his pulminary conduit to allow better flow but once inside the flows are perfect and nothing needed to be done at that time. They said in about a year from then they will put a stint in to avoid replacment of the conduit for another year.
In June we applied for SSI/Disablity and the other day we got a call from the SSI/Disablity Dr. to ask us how Rudy was doing. And since he is doing so well they have scheduled him a physical evalutaion to see just how far behind his heart condition has put him.
I am beginning to think he wont qualify for disablity cause he is doing so well. Trust me I am greatful that he is healthy and happy but his bills from the cath and ultrasounds are killing me. I have insurance thru my work but the deductibles are way high and I dont know how I am every going to pay the bills. Any advice or expericances you can share with me would be great.

Thanks for having this forum available
Love Kimberly and son Rudy

[busyhoneybee]

Let us know when you hear anything from SSI. I was under the impression that as long as you meet the other requirements for SSI - the fact that he has a defect was all he needed to qualify. I haven't heard of kids needing physicals for SSI. Usually it's just a signature required from your cardiologist. Good luck!!

[LaughingWarrior'sFamily]

My son Isaac is now seven, and he has Hypoplastic Right Heart with several defects. Anyway, he has SSI Disability and his Pediatrician says he should have no problem keeping it because he is disabled for life. Isaac has been doing well and looks like any other little seven year old. However, after testing him any professional can see he has disabilities. His development is behind, and due to his delays he is in special ed. Some people see how smart he is and wonder why he is in special ed, but don't quite understand how he could have other delays.
Please let me know how your son's SSI goes. He should have no problem qualifying. However, income & assets can be a factor. I wish you the best. I am here if you need someone to talk to.

Hugs, Djinni

[deanna.m.gourley]

My daughter Gracie is a hypoplastic left heart baby and receives SSI, though it is a life saver because it gives us extra money, qualifies her for medicaid and even for WIC...it is also a headache.

Every month you have to provide pay stubs and then SSI determines if they are paying you too much money, not enough, or just right. One month they'll send you an extra check because you didn't get enough money from them. Then the next month you'll recieve a letter, stating that they are cutting your benefits and that you were overpaid and now need to pay money back to them. If you can't pay it like you would a bill, they will deduct it from your monthly checks until paid for.

It truly is a rediculous way of doing things, who knew they had so much time on their hands. SSI also doesn't allow you to have more than $2000 in your accounts, or else it effects your pay out. One month my husband received 3 pay checks and because of that we had to pay back lots of money and didn't even get any money for a couple of months and lost Gracie's medicaid during those months.

We're not in a position yet to get out, because though it is frustrating it is helping us...I just wanted to give you a heads up, because when these things happened to me I was shocked. I also know other heart families have dealt with the same thing.

Good luck with the physical, my only advice would be to resist the urge to make Rudy shine. Focus on his delays and disabilities, the things that he has a hard time doing or can't do. If he tires quickly, share that. If he had a hard time with a cold tell them....they need to see he isn't like a healthy kid. And above all else just be nice and curtious, each case worker has the final say...you could have two kids that are in the exact situation and one case worker will approve one and the other will deny him. Its unfortunate but the truth, just don't take no for an answer and appeal.

Deanna
mom to Morgan (HH), Gracie (HLHS)

[RUDYandMOM]

thanks for the suggestions and heads up. medically rudy passed to get ssi and medicare but denied the case cause they said that we didn't turn on the checksubs they asked for. and we did heeheh. so i immediately went and filled out the appeal and turned the missing stubs they asked for and we are waiting on that now.

[Kaidence's Mommy]

We had SSI Disability for Kaidence. We played by all the rules. In fact, I am kind of a paranoid person over stuff like that so we hand delivered pay stubs (I was afraid it would be the one time something got lost in the mail). Even after all of that and my MANY hours calling them to tell them they sent too much money, they assured us that it was correct. Looooong story short. We are currently paying back $2,500.00 to SSI. Our worker told us that they were the ones that made the mistake. I have heard from many of this happening. In all case that I have heard of, it always happens when you leave the program. Then they say 'by the way, I think we have overpaid you'. REALLY?????? And all of those paystubs that we hand delivered, they claim they were never put into the computer system. When I asked how this was my fault, they told me that they were too overworked and that this happens.

I guess, just be careful. I feel blessed that we at least had the coverage for her artificial heart and then her heart transplant. That was a BIG blessing and worth the money we have to repay. Just a frusterating situation. Good Luck!

[LaughingWarrior'sFamily]

I can relate to everything everyone has said here about SSI. We have gone through it all over the past few years. We have been denied, approved, had to pay back over payments(which I am doing now), appeals, etc. My way of putting it is you have to jump through hoops, when they say it, how they say it, and if you don't they will deny you or cut you off in a heartbeat. It's that cold. It drives me crazy. You will receive a notice on a Tuesday for instance that was postdated on Monday and created on the previous Thursday, and you only have until Friday to get the info requested in. The problem is that you are a busy person and don't have much time to gather the info and send it as fast as they need it, and they are closed on Fridays as well as all Monday holidays as well as other holidays. This can be very tricky working with their timing. The last notice I recieved for review was postdated on Jan 5th 2010 and was Due 1-5-2010 (the same day it was postmarked) and I didn't even receive it until the 7th. We will have to see what happens. They love to intimidate, I won't be surprised if I get a denial letter. Try to hang in there and if you ever need someone to talk to I am here. Hugs, ~Djinni~ (Mom of Isaac HRHS, Pulm Stenosis, VSD, Etc..)

[RUDYandMOM]

i found out today that rudy only qualified for disability for one one month based on my husbands weekly unemployment check and his one month of working in 2009 and my 9.00 dollar an hour paycheck. granted during the month of oct 2009 rick made 5000 but since the he has been back on unemployment and his unemployment just went down and i make more than he does now. i dont get it. im going to appeal their decision and may have to get ssi/disablity lawyer. i dont know how im going to take care of rudys medical bills the are in the thousands every year and im sure you all feel that pain. rudys dr is pinto and we see her next week for a check up and probably make a road map for the next year so wish us luck. thanks for listening