[autismparentsupport] Summary of Town Hall Meeting

[Guest guest]

He could also just be saying the stuff about the additional language to

pacify parents so the meeting would end. Maybe I am giving too much credit

by thinking he is this clever!

_____

From: autismparentsupport

[mailto:autismparentsupport ] On Behalf Of Kristi Hammer

Sent: Thursday, October 26, 2006 9:20 PM

To: Texas-Autism-Advocacy ;

autismparentsupport ; DFW-MAFEA

Subject: [autismparentsupport] Summary of Town Hall Meeting

Okay guys…Here is a summary of the town hall meeting. I hope it makes

sense…I am pooped, but really wanted to get this in your hands tonight.

Town Hall Meeting – 6 invited, 6 guests in his office last night.

Barton continues to stick to his position that NIH Reform, if passed, will

cover the same thing as S.843 CAA. This is entirely untrue. He admitted

that NIH Reform has zero provisions for autism specifically, and no

timelines for impacting change. If passed NIH Reform would keep present

levels of funding for diseases “whole” for 3 years” VERY BAD news for us

since we aren’t getting much now. There will be $1.4 billion dollars in the

first year that will be “up for grabs” to any disease who can prove their

research worthy. In other words, we continue to compete with the other

diseases…a battle which we have consistently lost. Nothing changes for us.

He also confirmed that under no circumstances will he release CAA for vote

(neither the Senate or House bills). Period.

After much debate, he told the participants (12, and maybe ½ parents), that

if they would “bring him some language that would be suitable to us” he

would “work with us to get something done on it” Here are the caveats to

this. I can pretty much guaranty that whatever local parents drafted, and he

agreed upon (if that ever happened) would be insufficient to the Autism

community and they would kill the bill themselves, and start over. Then the

autism community could look like the “unreasonable ones”, and he would be

off the hook. Also, this proposed language, if used, would be part of his

NIH Reform bill. There is ZERO possibility that NIH Reform could pass in

the lame duck session. Not because no one wants it, but there is simply not

enough time, and there is no companion Senate Bill.

So….no matter what, left in Barton’s hands, the Autism provisions will die

in December. He won’t release CAA, and although he claims he might put a

few autism provisions in NIH Reform (if the participants in the town hall

write it), it doesn’t matter because NIH Reform won’t have a chance to pass,

and the autism community wouldn’t accept it.. Either way we lose, and I

think that is the intention.

The bottom line is, at this point, only Hastert, or the Discharge Rule could

move this forward this year. We will get this done next year, if the Dems

take the house, but it will be at least another 52 weeks, at a cost of

36,000 children being newly diagnosed, and the rest of us put off for yet

another year over one man’s politics/ego. We explained to him what this

delay meant in terms of the human impact, and he was unmoved.

There were a number of people there last night who thought Barton was “very

sincere” in his desire to work with us. If you are on this list and reading

this, please don’t buy into that.. I can’t say it enough. The autism

community will not accept anything but S.843, and he would be using you to

get some language that he could take to the autism community, so that they

would be forced to turn it down, and they would be the bad guys…not him.

Don’t let that happen to us.