I have been raising my grandson 7ys SWCAH for 5 yrs now. When I first got custody of him he was in really bad shape because his mother (not my daughter) never gave  him his meds, missed all Dr’s appts. etc.  I found out she was getting SSI for him since he was 1. So I went to the office to explain that I had legal custody of him. I did not want her getting the checks. Anyway I got a few checks then they took it them away from me. I had to quit my job because he was so ill I had to take off 3 days a week. To make a long story short because she did not take care of him she got the checks because he was very ill. Well when they  re-evaluat ed the situation they said he was not qualified. Because the reports all came back as him in good condition. So it took me 2 yrs to get him back to normal from her neglect. Dr. visits once a week you name it. I put him on a strict schedule with his meds and watched his diet. Now his levels are great, his bone age is right a 7yrs old. 90% in weight and 80% in height.  So since he didnt get meds and proper care he was entitled. I took care of him and they took it away.  Moral of this story is she got a monthly check for her habit while she didn’t give him proper care!!! I spent 2 yrs to get him under control and he gets nothing. I am the grandmother and he has no one else. I wanted to have that for him in case something happended to me.  Also they 1st determined him eligible thru the guidelines and they keep saying its different now. Well hes under control but he willl always have CAH.  SOrry got carried away.

Jenny