After staying up most of the night reading educational law books and researching IEP meetings, I was frantic for today's meeting. One book I read was "the Special Educational Battlefield". The name alone scares the snot out of me, and put my usual glass half empty self into a fight mode. As I snapped at Steve about feeling so ill-prepared on the way to the meeting, I realized that whatever would be would be, and that if I blew it because I was ill-prepared, then I would deal with that challenge when it arrived and wouldn't anticipate anything else.
Well, the meeting went really well. Zach is getting his name put on a list for a program, but the school district is willing to hold out until the end of Early Intervention to change anything. This means that we can keep him in his home-based program for ABA all the way until December if we so choose, with Early Intervention picking up (most of) the cost, my rough estimates are $35,000, and our insurance covering roughly $3000. We are anticipating out of pocket costs at around $4100. Is it any wonder the school district would be fine with letting things be?
The problems with this are that if we decide to do a school program with him, ABA slots are limited and will likely fill up soon. If we don't start in September, and wait until January, the program will likely be filled. So what then? This is what I don't know. Will the school district pick up the home based program and run with it? Again, my pessimistic mind says likely not, but I truly am not sure. I didn't ask at the meeting, because I wasn't thinking about that. I was more thinking that the school district was going to push for a program to get started this July, and didn't want that for sure.
I ran the numbers, and at home program would likely cost us in the $40,000 - $60,000 range next year. There goes the update to the kitchen we want to do, and then some. Did I mention Steve is driving a 13 year old car? Because we live in New York, current law does not force insurance companies to cover therapies for autism. This is where I will ask many of you fellow NY state residents to help - I will be sending out pre-addressed/stamped letters to those wishing to help out to send to your state representatives about legislation for mandating insurance coverage of autism treatments, in particular, ABA.
Anyone who has read our blog, or knows our story, realizes that we had NO progress whatsoever using the Floortime/DIR approach. After almost 9 months of not meeting our #1 IFSP goal of getting Zach to point we were less than hopeful. After 10 days of ABA therapy - he was doing it independently and spontaneously. This stuff needs to get covered. It might not work for all, but the other stuff wasn't working at all for us, and there are many more people with success stories using ABA than pretty much any other method. By the way - I think those other methods need to get covered too - whatever it takes. Just like chemo is not the only treatment for cancer, ABA is not the only therapy for autism. Let the experts dictate what methods to try and get it covered.
Anyhow, I will be asking each of youNew Yorkers to write to your Assembly rep and Senator in support of the following NY state bills: S. 2366 and A. 6001. Currently, eight states – Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina and Texas -- have enacted autism insurance reform legislation. Several other state legislatures will vote on similar legislation during the current session. Tricare insurance (one of the insurance programs for military and former miltary members) will cover ABA regardless of what state you live in. If we lived in Montana, Blue Cross Blue Shield (our current carrier) would provide ABA.
This will make a serious difference in so many lives - and will help ease the burden of many families and eventually our government. Proper intervention can make the difference between a independent and needing many services individual.
So one battle down, with a whole war to go. Did I mention he said both "down" and "milk" today spontaneously? That's my boy! Please help us help him!
To send an email or create a print out to send, please go to the autism votes site.
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