Any other parents of children with disabilities Please Help!
Hi, I am the parent of a 5 yr old son with a heart condition ,athsma,and history of Heart Failure,Cardiac Arrest,and Stroke.We have medical ins.with DH's employer and in the beginning of all the madness DS was approved for the then CIDC( Ins. program for children with disabilities) and we had this supplemental coverage until 2 yrs ago.We were told that DS no longer qualified for the program due to DH's salary.I do not work outside the home because DS is ill alot during the year and is home for up t 2 weeks sometimes before being able to return to school.I was told by case worker that we might qualify if we could meet a spindown amount for our medical out of pocket expenses which we did and I turned all the reciepts and so forth over th case worker to be sent to Austin.But because the paperwork was not turned in in time by caseworker son lost his place with the program.I have been trying for the past 2 years now to find a program that would accept him.I have put him on numerous waiting lists and I have made just as many phone calls.I even went thru all the red tape to try and get him qualified for assistance for SSI(social security for children with disabilies.)After 6 mths he was approved.He recieved one check for $126.00.Then 2 mths later I recieved a letter from SS saying he no longer qualified and we have to pay back the check he recieved because he was overpayed that same amount.Now just this month we have been told that DS has a ciculation problem in his brain and doctors are wanting to do a Angiogram on his brain.My son has come so far since sufering his stroke but still has delays.I am desperate to find a supplemental Ins. Program to help with the remaining health expenses as we have 2 other children ,one of which also suffers from medical issues and sees her own doctors but will soon graduate high School but still my DH's income can only go so far and it just seems hopeless finding anyhelp because we are always told we don't qualify.Please,Please,Please, if anyone has had this similar problem and has found help please let me hear from you!Thanks you so much and God Bless,
Shelia mother of ADAM