Do you have a developmentally disabled/handicapped child that qualifies for Medicaid under Katie Beckett?

Our youngest daughter is 2 and a half years old. She has to eat by an enteral pump, she has hearing aids in both ears, and cannot walk or talk yet. She has 2 ASDs(holes in her heart), a horseshoe kidney, and other physical anomalies. She averages a visit to a different specialist each week. My daughter attend occpational and speech therapy for half a day, 5 days a week. About every 6 months, we'll get a letter saying she doesn't meet requirements of "care at an institutional level", we'll spend about 3 months fighting to get the errors in their database corrected, then in 3 months, the whole cycle begins all over. Do any of you parents have this problem.? The fact that she has multiple symptoms, rather than one known syndrome or "ism" makes her drop through their classification system. Are there any resources or groups for parents of children like ours?

The doctors are stumped. There's no way to categorize exactly what she has: She's unique, I guess.

I don't know anyting about this.
Can't you get her classified in one "ism" so she does not dropthrough even though it is not accurate or would it take away some services to do this?
You need a doctor to fight for you and I would write to your congressmen in Washington D.C.
You might also contact Children's Hospital in Washington D.C. Also St. Jude's Children's Hospital. They have the staff there to make your life smoother. I know you do not live near these hospitals but they can possibly help you long distance. They are the experts on helping children with multiple problems.

I have a handicapped child and the best resources I have been found r on the internet. Start typing in ur hometown or the biggest city near you to see what u can come up with it may surprise you with the results