My son was diagnosed at birth. I immediately applied for disability for him. It took 30 days before I could get an appointment with Social security disability. After 4 months my request was denied. Apparently sacral agenesis, club feet and incontinence of bladder and bowel are completely normal limitations. I asked for a reconsideration, and after an additional three months was again denied. According to "their doctors" my son has normal limitations. This I find odd, considering none of my specialist can tell me anything about this disability other then " its a learning experience, that we must take one day at a time considering it's so rare and they know next to nothing about future difficulties". So once again I requested the next step in this process A hearing... Now, in this process I have to take my case to the nearest large city. In this case Charlotte, NC. Here's the fun part. It takes 2 years to get a hearing!!!. Well I think they do this to discourage legitimate cases. I'm not going away though. It's been a year this month, and I'm still waiting for my appointment date, haven't heard anything and don't expect to for at least another 10 months. I feel discouraged that even though my husband has paid into social security for the last 16 years for people with legitimate claims they are more often then not denied from the start. I often wonder what is normal limitations, and how can you define each individual under such a broad scope?
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Caudal Regression Syndrome
- By bakerfamily
- Posted July 19, 2008 at 7:31 am · 2 replies
- In Financial issues
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- By momtimes5
- Posted July 29, 2008 at 8:47 am
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I also have a son with C.R.S., he just turned one. When I questioned about Social Security Disability for him, they flat out told me that we are financially ineligible and he would have to wait until he is 18 to file on his own. I would also like to speak to you in general about your experiences with Caudal Regression Syndrome.
- By sliammom
- Posted August 30, 2008 at 6:38 pm
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Wow, I have a 10 month old with CRs, his spine ends at the L1. We live in Texas and were approved for SSI within 2 weeks of having applied. You do have to meet the income limitations, which we do because I quit work so my son is covered. I know here in Texas there is a loophole on how to get your child on medicaid, its called the Rider 28 program where you spend 24 hours in a nursing home and the state doesnt want you to put your child in a nursing home, which we never would, so they give you medicaid to help with the costs.
There are also about a bajillion other programs that are available - we got ourselves a medical social worker for my son along with Early Childhood Intervention and other programs.
I really think you ought to check into getting a medical social worker to help you through all of this. I know that SSI is now covering children with ADD and ADHD so I do not know why they are giving you such a hard time with this. Sounds like you might need to see a new doc. If you tell them your child has caudal regression and they go caudal what, just walk out and find another doc. You do not need a doc treating your child from a medical book, a good doc will know their limitations as to what they can treat medically.
Please email me if I can help with anything - we are going through the process right now but I would love to help if I can!!
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