Wednesday, May 25, 2011

SB 1274 Action Alert: Veto demonstration re-scheduled for Friday June 3

The following update was received from Rafael del Castillo this morning.

One of the key organizations urging the Governor to VETO SB1274 has asked for more time to get together a veto demonstration, so we are looking at Friday, June 3, to make sure there is enough time and there are enough people. Please email me at whether you (and friends and family) can make it to the Capitol that afternoon (6/3/11). A lot of camaraderie will be had by all!

BTW, I do have a correction about the hearings I referred to in my previous post. CCIIO (Center for Consumer Information and Insurance Oversight, which has charge over compliance) is not holding hearings about individual state laws. However, I believe that CCIIO must have a formal process which involves a 2-way discussion of the points and, as I previously said, not go hunting squirrels with an elephant gun.

On that note, the promise that I would get an audience for substantive discussions with CCIIO has NOT BEEN KEPT, and it is Wednesday. Tomorrow will be a full week.

I am urging our Congressional delegation to help ensure that the promise is made good.

I have tried hard, as you know, to reach accommodations. Those efforts have thus far been met with disdain. SB1274 is a sad chapter in legislation that should never have made it out of committee. We must bring all of our resources to bear on the Governor to do the right thing.

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About Me

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I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.