The newsletter contains a copy of a letter that NADE sent to Social Security on the agency's recent proposal to change its listings on Down Syndrome. As I read the letter, it looks like Social Security is setting a trap, I hope unintentionally, for those with Down Syndrome. Unless they have genetic testing for Down Syndrome and unless that testing meets certain criteria which may be of dubious relevance, Social Security may simply ignore the Down Syndrome regardless of any other evidence. If my understanding of the letter is correct and if NADE has it right, this is something that must be addressed. I really do not want to have to start representing a lot of people with Down Syndrome. That would be ridiculous.
Another article describes a presentation by Social Security's Inspector General (IG) at a NADE event. The IG talked, at least briefly, about ongoing investigations of Administrative Law Judges (ALJs) in Puerto Rico and West Virginia.
It is pretty standard to have the genetic testing right after the child is born. The dr. orders this right away. In 98% of the cases, the genetic testing is cut and dry, you have three copies of 21 in all your cells or you don't. The less common tranlocation and mosaic are less severe in most cases and would need more evidence, possibly IQ testing and/or PRT/MFRC. It is possible for parents to work though, so you really don't need this info until they are 18.
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