Does your child recieve SSI

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kim evans

Posted Wednesday, June 17, 2009 5:24 PM

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Last Login: Monday, November 02, 2009 12:05 PM
Posts: 12, Visits: 20

My daughter was diagnosed with Polyarticular JIA and is ANA+. I was told to apply for SSI and did so, but I was wondering if anyone actually recieves it. The medical insurance would help us out so much.

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Brian Polinsky

Posted Wednesday, June 17, 2009 7:28 PM

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Last Login: Monday, June 22, 2009 6:32 PM
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Our daughter has poly JRA and is on MTX and probably will be on Enbrel after the next time we goto see the Rheumy. When we found out that she has JRA, a social worker called from Chidren's Hospital and told us that we now qualified for assistance from the state. We had to file for SSI, hoping we get denied. After filing out a ton of paper work, we now have what our state calls a Gateway card. This supplemental insurance picks up everything that our regualr insurance doesnt. This goes from co-pays at the doctors office to pharmacy co-pays. I am so glad we did this cause from what i have been told, the medication can get really pricey!!!!!

Brian

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Sharon Baker

Posted Tuesday, July 07, 2009 1:49 PM

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Hi Kim! My son suffers from Juvenile Rheumatoid Arthritis. I filed for Social Security when he was five years old. It took me four years of fighting tooth and nail and tons of appeals, but we finally got it last summer. The judge we went before was very kind and went back three and a half years, so he ended up with a nice chunk of back pay. It was a long tough process, but I'm glad I kept fighting. Enbrel alone would be running us nearly two grand a month and that's just the tip of the iceberg of the meds he's on. Also, do NOT get an attorney. They will take a large chunk of any monies you receive and (honestly) you can do the whole process yourself. Hope this was helpful! Satisfied

Sharon

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kim evans

Posted Wednesday, July 08, 2009 9:19 AM

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Thanks, I started the process.

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Kymberli Mundwiller

Posted Thursday, July 09, 2009 9:55 PM

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Last Login: Thursday, October 08, 2009 4:07 AM
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My (nonJRA) baby gets SSI as well for medical. I really just wanted the medical card, as we thought he could have future hospitalizations (got the medical 3 days before he was admitted again for respiratory distress), and futher testing. I didn't even hope for the monthly stipend, but amazingly, he was approved. I think it was pushed through when he went into the hospital in Feb. I think the best thing is to NOT get an attorney. For some reason, my friend with children with worse and longer standing med issues than my baby, had years to fight to get it. Whereas we were approved in 3 mos. I think NOT having an attorney may have caused a big hindrance to them. And, the possibility that having other children on SSI, may have also played a part, I don't know. But, we were very blessed with the medical, the stipend has been a PITB, because we are so borderline. But, I don't regret doing it. His first year medical was running out, and I knew we were going to have a very hard time if we couldn't get it extended. Kymberli

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Deetipton

Posted Sunday, July 12, 2009 2:23 AM

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Last Login: Sunday, July 12, 2009 2:38 AM
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Our pediatrician one day gave me the name of a lawyer and told me to call him and get Emily on SSI. I haven't actually done it yet, but I did put in my first application before I had a formal diagnosis. I was warned that there would be many, many appeals but they should go off of your first application date. I'm going to re-apply on Monday.

For those that don't have it but are on Enbrel they have their "Quick Assist" program. The first 6 months are free. They just changed the second 6 months. I was told before that my co-pay would be $120 a month, then I was told $75. I recently got a letter stating that my new co-pay would be $10. Sure enough, my last refill was $10. I've heard that some of the other meds do something similar.

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