Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Jeanie I wanted to add to someone else's comment about asking drs to advise families about EI services. Believe it or not, but here in Pgh, Children's Hospital drs and social workers all have an unwritten rule not to advise parents about these services unless there is an obvious obvious need for them. In other words, even though the drs felt strongly that my daughter was born with a syndrome, they didn't know what it was. The only thing they knew for sure, was her heart condition. I didn't get the CHARGE dx until she was 6 mos old. And so not one dr ever referred me to EI because (to put it in their words--I've heard this second hand though) " they didn't want to upset me " . For real! The drs don't like to be the one to suggest to parents that their child may have dev problems and need therapy svcs so they figure eventually somewhere along the line I'll hear about it somewhere else. However, the pediatrician didn't want to tell me either. I found out about EI through our Highmark BC/BS casemanager who just happened to be a parent of a child with Down's Syndrome. After arguing for 20 min over them not covering respite care for a child needing around the clock constant medical care, she hung up and called the EI provider without even telling me. I only wish I took the opportunity to call her back and thank her. Our system moves so slow around here that if she had not done that, I wouldn't have been able to get referred until she was about 6 mos old meaning services wouldn't have begun to closer to 1 yr of age. Anyway, drs and social workers have to take more responsibility than that. Jeanne Quote Link to comment Share on other sites More sharing options...
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