Just to give a little background information, since this year has started, Ben has been really struggling with school. He doesn't like going, he isn't wanting to do any work and it just seems like something was off. After giving him a few months and not getting any better, it was strongly suggested to me to change rooms and get a different aid working with Ben. Since this has happened, he has gotten worse. After being there yesterday, I understand why he cries every day he has to go to school. I won't get into all the details, but nothing we have suggested is being done, his IEP isn't being followed and his primary team seems to have a bad attitude about Ben and being "stuck" with him. And we have had an equally unpleasant experience with his Special Ed Director. Ben won't be going back to school until we can meet with her supervisor and make some changes. I miss the days of having an aid and teacher who actually cared about Ben!
On top of that, we were informed that Ben is losing his Ohio Home Care Waiver, which will in turn cause him to lose his Ohio Medicaid. They are taking Waiver away b/c they feel he gets enough from insurance with nursing. We financially can not swing all the copays he incurs during hospital stays, monthly equipment, prescriptions, etc. That will also cut back the number of hours we get with nursing. We are just starting the process of appealing this and fighting.
Not been a good week. :(
