Re: AS at again@!!

[Guest guest]

Craig Snyder from Ikon, along with allison singer from AS, are the two primary

people I dealt with during the whole Barton thing ... dig deep with your

research on both Snyder and Ikon and many of the things you are wondering about

will be, unfortunately, found to be true:(  Both used inappropriate strong arm

tactics to try to get us to back down in ways that would have undermined

the Combating Autism Act itself and possibly would have insured that it would

have remained stalled in Joe Barton's committee at the time.  Given my personal

experience with AS and IKon during that whole thing, and now seeing the same

questionable maneuvering that seems to foster interests other than children with

Autism and their families, my conviction that this organization should not be

our only voice in the political process get firmer and firmer entrenched.

[Texas-Autism- Advocacy] AS at again@!!

Sounds all too familiar - just like AS acted here in Texas with the

Barton/Combating Autism Act...

FW from: http://www.emaxheal th.com/132/ 23000.html

Pennsylvania Tells Autism Speaks to Stop Talking

In a historical and unprecedented move, the Pennsylvania legislature voted

nearly unanimously in the affirmative for House Bill 1150 to mandate commercial

insurance companies to cover some services for children with autism. The bill,

introduced by House Speaker Dennis M. O'Brien, requires insurance companies to

cover up to $36,000 of autism-related treatment for individuals less than 21

years old.

In nearly one full week of roller-coaster negotiations with the House Banking

and Insurance Committee, headed by Senator Don White, the bill was stripped of

all useful language, leaving Pennsylvania children with autism vulnerable to

denials of coverage. House Speaker O'Brien, along with Pennsylvania Governor

G. Rendell and Secretary Estelle Richman of the Department of Public

Welfare joined in condemning the gutting of the bill. " The current version of HB

1150 may look like it gives coverage to families affected by autism, but it's an

illusion. This version will actually hurt some families who have kids with

autism. This risk is unacceptable, " said Speaker O'Brien in a statement

released on June 29, 2008.

Autism Speaks, a national organization that conducts fundraising for research,

and their paid lobbyists from Ikon, Inc., made several back-door concessions on

the bill without the consent of Speaker O'Brien. In an unparalleled move, the

entire Pennsylvania and national autism community stood in unity to support

Speaker O'Brien to say " Only the Speaker Speaks for me. " Over 62 organizations

across Pennsylvania and nationally converged to show support for the Speaker,

who has a nephew with autism.

" This is an amazing effort on the part of the entire autism community to tell

Autism Speaks that the children come first, not politics, " said

Waeltermann, President of AutismLink, a statewide Pennsylvania autism advocacy

and information organization. " I think it is abundantly clear that Autism Speaks

is not speaking for Pennsylvania. I've never seen this type of grassroots

activity in all my years in the autism community. This level of unity definitely

sends a clear message, but is Autism Speaks listening? "

State Senator Jane Clare Orie, head of the Pennsylvania Autism Caucus touted the

document as " a gold standard of care " for Pennsylvanians.

" Only with Speaker O'Brien's amendments, does HB 1150 become the strongest

autism insurance legislation in the nation, " said Woodings, former

president of the Autism Society of America, Greater burg Area Chapter. " I

find it difficult to comprehend any autism organization not supporting the

Speaker's desire to pass the strongest bill possible. I was proud that the

Autism Society of America stood firmly behind Speaker O'Brien on a local, state,

and national level. The support of Pennsylvanians affected by autism enabled

Dennis O'Brien to fight for his bill and leave a legacy that will last far

beyond his time as Speaker of the House. "