I used to live in NJ and I used to recieve SSI for my daughter, for about 7 years. We then moved to NY and it was transferred over to NY from NJ. We have become financially ineligible to recieve it any longer. My husband had lost his job the day after Amanda came home from ICU (bummer) and the social worker at the hospital told us to try to apply. The Dr. didn't think we'd get it, but cooperated totally with the necessary paperwork, and the SSI worker himself said we probably wouldn't get it..but it was approved and was a God send through all those years that we surely needed it. It cover all medical and dental and prescription, and we got a nice check each month. I'm glad it was there for us. I would persue it if I was you, there are others out there who recieve it for CAH although the number is not alot. Eileen