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?

Summarized question: Where can one find resource and support groups for parents of children who are developmentally disabled?