Patricia - posted on 02/24/2010 ( 31 moms have responded )
Hi moms of kids with special needs...this message is SO important. My son has severe epilepsy and all the issues related to his seizures and his medications. He was also severely developmentally delayed (crawled at 1, walked at 3, still can't catch a ball, etc.) He was also severely speech impaired (talked at 7 years; still stutters). My message is this...we never applied for Social Security Disability because a) he was a child and we supported him, as was our job as parents and b) my spouse was military, so we got free medical care. Once he turned 18 and was no longer covered by our insurance and is unable to hold a job and support himself (he's 28 now), we applied for disability and he was denied, and denied, and denied. Turns out that unless you have 8+ DOCUMENTED seizures (not your word...but actual medical documentation) a MONTH, you cannot qualify for disability due to epilepsy. He has petite mal seizures every day (and absence seizures), but they aren't documented...you don't take them to a hospital for that. We were told, by Social Security, that "You should have applied when he was born...as a child, he would have been considered to be disabled and he would have had disability for life." Because we didn't NEED the disability or medical care, we didn't think we needed to suck money out of the government. Now that he is an adult and unable to take care of himself...he doesn't qualify. He has no insurance (and mounting medical bills that we can't afford to pay), his credit is destroyed, and he has no way to support himself. We are terrified of what will happen when we pass away. Bottom line: IF YOUR CHILD HAS SPECIAL NEEDS...APPLY FOR DISABILITY RIGHT NOW!!! Waiting until they "need" it to support themselves is too late! Don't make the mistake we did!! We are still fighting social security, but have been told by 14 attorneys and 2 groups of psychologists that he will probably never get it. BE PROACTIVE FOR YOUR CHILD! PREPARE FOR THEIR FUTURE NOW!