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Old 05-25-2012, 10:04 PM   #11
lotstolearn
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Re: Genetic Testing and Ins??

A genetic diagnosis cannot stop you from getting health insurance; the companies cannot deny you. However, your child may not ever be able to get life insurance. That isn't covered under the GINA law.

Also, I'm really familiar with Fragile X. That condition doesn't cause clefts so it might not be the best choice of testing. Also ask your geneticist or the genetic counselor he works with to write you a letter of medical necessity. Basically, they can say that your child needs this test and get it preauthorized so you won't have to pay for it.

The amount of therapies shouild be based on your child's needs as determined by their evaluation. A genetic diagnosis will not help you get any additional therapies. That's been my experience at least (I work in genetics).

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Old 05-26-2012, 05:25 AM   #12
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Usually of a child has a disability (a genetic defect/abnormality/etc) they can get Medicaid and SSI. Depending on income for the SSI of course. There are programs...in Florida it's called children's medical services...that coordinate everything and can help get treatments, therapies,etc. our oldest has a genetic defect and he's been on Medicaid since he was born. Hell have it til he's at least 18. I was told that all states have similar programs so that may be worth looking into.
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