Re: Can I just tell you what Autism Speaks has done here in PA?

[Guest guest]

writes:

Our insurance bill, which we have worked hard on for over five years,is failing at the last minute. Why? You might ask? Ask Autism Speaks.

--------------------------------------------------------------------------

How many times are we supposed to give Autism Speaks the "benefit of the doubt"? How many times are we supposed to be lulled by the false hope they will eventually become the organization they pretend to be?

In my humble opinion, Autism Speaks provides a very strong wing on the same bird of prey as the insurance companies, compromised politicians, terrified lower-level public health officials, and fat-cat, revolving door bureaucrats who routinely "cash in" when they eventually leave their positions of influence on the FDA, AAP and CDC.

As far as I can tell, they have done nothing but provide "legitimacy" to every vested interest that has sought to diminish or weaken our legislative efforts, whether statewide or federal, to help our long-suffering community.

If Autism Speaks did not provide their "wing" on that bird of prey that feasts off our children, that damn bird would have fallen to the ground already. Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

wrote:

To be honest with you, I'm so fed up.... I just can't even begin toexplain how I feel. AS came in here under the pretense that theywould help us, and in the end, now they are fighting against us.

---------------------------------------------------------------------------------------------

My friend, please do not consider your efforts "wasted". They are NOT.

You have been in the "political" trenches, and, I can assure your exposure of Autism Speaks will be of great benefit to those in other states, who will "learn" and "profit" from your experience.

This organization now has a political "track record", and, it would be foolish for any state or federal legislator to ignore that record. Especially if those legislators are sincere in their effort to pursue legislation that seeks to benefit our families.

I live in New York State, and, I can guarantee you New York State legislators will soon learn they cannot hide behind the soiled reputation of Autism Speaks.

As I said, the time for "hoping" this organization will "change", is OVER.

And, your experience in Pennslyvania has "greased" their skids.

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

>

Recently, a leader of Autism Speaks

indicated his desire to cause the " sense of a wave " in the states

toward a larger National agenda.[...] In other words, an insurance

bill is being prepared for passage that lacks any concrete assurance

that it will actually help Pennsylvanians with autism and their families.

>

If true, this would be consistent with the way AS operates

politically. Like in PA where AS is lobbying an insurance industry

friendly insurance bill, they did the same with the Combating Autism

Act, working to pass a pharma friendly law that was stripped of

meaningful language for autism-vaccine research.

It would be interesting to hear AS's version of these PA events.

Lenny

[Guest guest]

Bob:

To be honest with you, I'm so fed up.... I just can't even begin to

explain how I feel. AS came in here under the pretense that they

would help us, and in the end, now they are fighting against us.

LET THIS BE A WARNING TO ANY STATE WHO ACCEPTS THE OFFER OF HELP FROM

AS TO PASS INSURANCE LEGISLATION.

I've worked my proverbial A & & off for five years, along with many

other dedicated advocates only to be screwed over by AS in the end.

My advice: stick with grassroots organizations -- who you know, what

you know -- DO NOT go with national organizations who don't understand

the intricacies of your state or your situation. They have ulterior

motives.........trust me. Don't be lured by the promise of money,

lobbyists, etc.

I've wasted many hours over the last 5 years to see this bill through

only to see it shattered into pieces by an organization that claims to

be in our corner in the last hours of the senate session.

Sadly,

>

> writes:

>

> Our insurance bill, which we have worked hard on for over five years,

> is failing at the last minute. Why? You might ask?

>

> Ask Autism Speaks.

>

--------------------------------------------------------------------------

> How many times are we supposed to give Autism Speaks the " benefit

of the

> doubt " ? How many times are we supposed to be lulled by the false

hope they will

> eventually become the organization they pretend to be?

>

> In my humble opinion, Autism Speaks provides a very strong wing on

the same

> bird of prey as the insurance companies, compromised politicians,

terrified

> lower-level public health officials, and fat-cat, revolving door

bureaucrats

> who routinely " cash in " when they eventually leave their positions of

> influence on the FDA, AAP and CDC.

>

> As far as I can tell, they have done nothing but provide

" legitimacy " to

> every vested interest that has sought to diminish or weaken our

legislative

> efforts, whether statewide or federal, to help our long-suffering

community.

>

> If Autism Speaks did not provide their " wing " on that bird of prey

that

> feasts off our children, that damn bird would have fallen to the

ground already.

>

>

>

>

> **************Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

>

[Guest guest]

Lenny,

Please ask them, because all of us are heartbroken and at a loss for

words. They are spinning their rhetoric.

We thought during the last hours of compromise they would come through

for us -- BUT INSTEAD THEY SIDED WITH THE INSURANCE COMPANIES.

What does this tell you?

> >

> Recently, a leader of Autism Speaks

> indicated his desire to cause the " sense of a wave " in the states

> toward a larger National agenda.[...] In other words, an insurance

> bill is being prepared for passage that lacks any concrete assurance

> that it will actually help Pennsylvanians with autism and their

families.

> >

>

> If true, this would be consistent with the way AS operates

> politically. Like in PA where AS is lobbying an insurance industry

> friendly insurance bill, they did the same with the Combating Autism

> Act, working to pass a pharma friendly law that was stripped of

> meaningful language for autism-vaccine research.

>

> It would be interesting to hear AS's version of these PA events.

>

> Lenny

>

[Guest guest]

Reynolds was there. Lots of people know her

Subject: Re: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 5:38 PM

Lenny,Please ask them, because all of us are heartbroken and at a loss forwords. They are spinning their rhetoric. We thought during the last hours of compromise they would come throughfor us -- BUT INSTEAD THEY SIDED WITH THE INSURANCE COMPANIES.What does this tell you?> >> Recently, a leader of Autism Speaks> indicated his desire to cause the "sense of a wave" in the states> toward a larger National agenda.[...] In other words, an insurance> bill is being prepared for passage that lacks any concrete assurance> that it will actually help Pennsylvanians

with autism and theirfamilies. > >> > If true, this would be consistent with the way AS operates> politically. Like in PA where AS is lobbying an insurance industry> friendly insurance bill, they did the same with the Combating Autism> Act, working to pass a pharma friendly law that was stripped of> meaningful language for autism-vaccine research.> > It would be interesting to hear AS's version of these PA events.> > Lenny>

[Guest guest]

What did say?

> > >

> > Recently, a leader of Autism Speaks

> > indicated his desire to cause the " sense of a wave " in the states

> > toward a larger National agenda.[...] In other words, an insurance

> > bill is being prepared for passage that lacks any concrete assurance

> > that it will actually help Pennsylvanians with autism and their

> families.

> > >

> >

> > If true, this would be consistent with the way AS operates

> > politically. Like in PA where AS is lobbying an insurance industry

> > friendly insurance bill, they did the same with the Combating Autism

> > Act, working to pass a pharma friendly law that was stripped of

> > meaningful language for autism-vaccine research.

> >

> > It would be interesting to hear AS's version of these PA events.

> >

> > Lenny

> >

>

[Guest guest]

OH wait, Reynolds HENDRIX, who works for Autism Speaks??

> > > >

> > > Recently, a leader of Autism Speaks

> > > indicated his desire to cause the " sense of a wave " in the states

> > > toward a larger National agenda.[...] In other words, an insurance

> > > bill is being prepared for passage that lacks any concrete assurance

> > > that it will actually help Pennsylvanians with autism and their

> > families.

> > > >

> > >

> > > If true, this would be consistent with the way AS operates

> > > politically. Like in PA where AS is lobbying an insurance industry

> > > friendly insurance bill, they did the same with the Combating Autism

> > > Act, working to pass a pharma friendly law that was stripped of

> > > meaningful language for autism-vaccine research.

> > >

> > > It would be interesting to hear AS's version of these PA events.

> > >

> > > Lenny

> > >

> >

>

[Guest guest]

well, I don't know what she said and I know she works for AS and you said Lenny should ask someone about it who is with AS so I just suggested her.

Didn't mean anything by it-jsut thought she might be someone to ask.

Oh well.....

Subject: Re: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 6:06 PM

OH wait, Reynolds HENDRIX, who works for Autism Speaks??> > > >> > > Recently, a leader of Autism Speaks> > > indicated his desire to cause the "sense of a wave" in the states> > > toward a larger National agenda.[...] In other words, an insurance> > > bill is being prepared

for passage that lacks any concrete assurance> > > that it will actually help Pennsylvanians with autism and their> > families. > > > >> > > > > > If true, this would be consistent with the way AS operates> > > politically. Like in PA where AS is lobbying an insurance industry> > > friendly insurance bill, they did the same with the Combating Autism> > > Act, working to pass a pharma friendly law that was stripped of> > > meaningful language for autism-vaccine research.> > > > > > It would be interesting to hear AS's version of these PA events.> > > > > > Lenny> > >> >>

[Guest guest]

I am so thankful for the Insurance that we have. Excellus has been wonderful. I receive a monthly call from a social worker that will help me find what ever I need, they find resources and speak on behalf of my child. This insurance company refused to pay for an eval that my child needed and proceeded ( With permission) to contact the school telling them they would need to pay for it and in the end the school did pay. If the school wanted it they were going to pay for it. I am truly thankful for what ever they can help me with.

I contacted Autism Speaks about their helping hands, that was a joke! I was told they don't help they don't have funds to help families. My question was then why was it on the site?

I don't go to the bigger organizations for anything, I have found that when it comes to actually helping. They don't. I do a lot of letter writing and calling of my legislative reps. I do get answers from them and they know that I am willing to keep an open mind yet try to help them help us. I have had several conversations my assemblyman and a couple others about autism and he is willing to listen. A lobbyist doesn't care if you get so long as they get. Parents need to start coming together, working toward what will help ALL children in general. Everyone is so afraid they are going to be left out, so they fight for what they need. Why not look for the good of all. I am an advocate, i don't believe in abuse toward our children, I fight each day with a letter or a complaint to whom ever I need to. I am willing to do training for just about anything in order to stop the abuse. I will find a door to open some where that will allow me

to push for Federal laws to be enforced. Even if we have to do it our selves. If we want change we need to take the initiative, we need to write letters, make phone calls and make appointments, or invites open to the legislators.

We as parents could draw up our own bill ans seek a legislator to support it. All it takes is team work! I can get some information on how to draw up a bill, we can look to get it supported. Its OUR CALL

TK

Subject: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 4:24 PMOur insurance bill, which we have worked hard on for over five years,

is failing at the last minute. Why? You might ask? Ask Autism Speaks.

This message is from Jim Bouder who WROTE THE LEGISLATION with Speaker

of the House Dennis O'Brien (who has a nephew severely affected by

autism). We had it passed unanimously through the House, then Autism

Speaks stuck its big nose in.........

Here's what a great organization AS is:

Friends:

There can be no question in the minds of Pennsylvanians with autism

and their families that Speaker Dennis O'Brien has unfailingly been

our community's champion in the Pennsylvania General Assembly for decades.

Dennis has seized every opportunity to advance the best interests of

our community, sometimes at political peril to himself, but always

with the unwavering goal of pushing forward the rights of the

community that he loves so much.

Dennis O'Brien sponsored the autism insurance bill now before the

General Assembly, the bill that aimed to require health insurers to

step up and cover diagnosis and treatment for persons with autism. At

every turn, Dennis has worked with families, with advocates, with

policy makers, and with those aligned with the insurance industry to

craft and push forward a bill that would truly benefit the

Pennsylvania autism community.

Autism Speaks, through its Government Affairs Department (who are not

Pennsylvanians and who had no previous experience with Pennsylvania

families, the service terrain, or with its legislative process) came

to Pennsylvania with the promise that they would help Speaker O'Brien

in his efforts to enact a sound autism insurance bill that would,

above all, help our community.

In the last several days, it has become apparent that, through the

efforts of the health-insurance lobby and its allies in the General

Assembly, what had been an important and helpful bill, that won the

overwhelming approval of a panel of national experts, has been mutated

into something that lacks the most important safeguards for

Pennsylvania families and that could, if enacted in its present form,

actually harm the very community Dennis O'Brien intended to help.

Dennis has made clear that, no matter how fervently he believes in

legislation to force health insurers to do what they should have done

years ago, he will not support his own bill if the changes forced upon

it by the insurance industry and its allies actually undermine the

purposes of the bill and pose too great a risk of harming the

community. If that is his decision our community as a whole must

accept that he has done so carefully, after excruciating deliberation,

and with sound counsel, and only because he believes the current

version of the bill would likely hurt the people he has spent his

entire career helping. Dennis has earned our faith in him.

I have learned recently that Autism Speaks' Government Affairs team

are now suggesting that they want to push the bill forward regardless

of what Speaker O'Brien believes and regardless of the perils it poses

to our Pennsylvania families. Recently, a leader of Autism Speaks

indicated his desire to cause the "sense of a wave" in the states

toward a larger National agenda. I responded to him that, in

Pennsylvania, we need to have more than a "sense" of a wave - an

"illusion" of a wave - but a REAL wave that meaningfully benefits

Pennsylvania's families. Many of us with considerable experience

navigating the Pennsylvania service systems believe that the bill as

reported out of Senator White's Committee is an "illusion" of a

mandate. In other words, an insurance bill is being prepared for

passage that lacks any concrete assurance that it will actually help

Pennsylvanians with autism and their families. We are the people who

will live with what happens in the General Assembly in the next few

days. We must be the voice the Pennsylvania legislature hears and we

must be the people who stand behind Speaker O'Brien during the next

several days.

In deciding which of the competing positions to support, our community

must consider our history. Dennis has been our standard bearer for

decades. He has been in the trenches with us on every important issue

we have faced. We know this man. We know his integrity and we know

his heart. He is one of our own. On the other hand, the Autism

Speaks' Government Affairs team are tourists in our community, and

unfamiliar with the lay of Pennsylvania's service terrain. They have

their own agenda, and it apparently focuses more on their national

goals than on what actually happens on the ground here in Pennsylvania

.. If Autism Speaks tells you to ignore Dennis's position or to

support the stripped-down version of HB 1150, ask yourself two simple

questions: (1) Where were they in the hard times during which Dennis

fought for us against MA caps and premiums and for an adult autism

waiver, and (2) where will they be months or years from now if this

fatally flawed bill they are endorsing starts eliminating services our

children so desperately need?

In the next few hours or days, our Speaker will tell us what he

believes must be done with respect to this bill – this bill that he

sponsored and championed and which many of us invested many, many

hours in advocating. Listen to him. Follow his lead. Do not be

distracted by those who share neither our history nor our future. Our

Speaker Speaks for me and I ask you all to let our Speaker speak for

us as well.

Jim Bouder

------------------------------------

[Guest guest]

Are we jumping the gun -- this a done deal? Aren't we still waiting word from O'?

Lenny

From: EOHarm [mailto:EOHarm ] On Behalf Of autismlinkSent: Friday, June 27, 2008 2:38 PMTo: EOHarm Subject: Re: Can I just tell you what Autism Speaks has done here in PA?

Lenny,Please ask them, because all of us are heartbroken and at a loss forwords. They are spinning their rhetoric. We thought during the last hours of compromise they would come throughfor us -- BUT INSTEAD THEY SIDED WITH THE INSURANCE COMPANIES.What does this tell you?> >> Recently, a leader of Autism Speaks> indicated his desire to cause the "sense of a wave" in the states> toward a larger National agenda.[...] In other words, an insurance> bill is being prepared for passage that lacks any concrete assurance> that it will actually help Pennsylvanians with autism and theirfamilies. > >> > If true, this would be consistent with the way AS operates> politically. Like in PA where AS is lobbying an insurance industry> friendly insurance bill, they did the same with the Combating Autism> Act, working to pass a pharma friendly law that was stripped of> meaningful language for autism-vaccine research.> > It would be interesting to hear AS's version of these PA events.> > Lenny>

[Guest guest]

Lenny:

There are currently two sides to the issue:

#1 -- side with Speaker O'Brien, who has a nephew with autism, who has

been the champion of all things autism for as long as this old girl

can remember

#2 -- side with Autism Speaks, who are teaming up with legislators

from the Banking & Insurance industry, and pass the bill as amended.

I can tell you that Speaker O'Brien is pretty much in charge here.

Any change that is made has to go to the house for approval, since

Speaker O'Brien introduced the bill. As amended, and approved by

Autism Speaks, Speaker O'Brien WILL KILL HIS OWN BILL because Autism

Speaks completely F & $#^YT%$#* it up.

> > >

> > Recently, a leader of Autism Speaks

> > indicated his desire to cause the " sense of a wave " in the states

> > toward a larger National agenda.[...] In other words, an insurance

> > bill is being prepared for passage that lacks any concrete assurance

> > that it will actually help Pennsylvanians with autism and their

> families.

> > >

> >

> > If true, this would be consistent with the way AS operates

> > politically. Like in PA where AS is lobbying an insurance industry

> > friendly insurance bill, they did the same with the Combating Autism

> > Act, working to pass a pharma friendly law that was stripped of

> > meaningful language for autism-vaccine research.

> >

> > It would be interesting to hear AS's version of these PA events.

> >

> > Lenny

> >

>

[Guest guest]

FORGIVE ME..HOW DID AUTISM SPEAKS GET INTO THIS ANYWAY? LiaGas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Another update:

Autism Speaks has now taken a stance against ALL PA ADVOCATES and

sided with the bill. A mass email was sent out by Reynolds

Hendrix of AS urging PA parents to support the bill. This has now

become a " pissing contest " between the Autism Speaks machine and PA

grassroots organizations who have been working together for years.

The bill's AUTHOR and SPONSOR are both denouncing it as an " empty

promise " and have promised to KILL THEIR OWN BILL if it goes to the

floor as amended by AS and the Banking & Insurance Committee.

Autism Speaks has ruined every chance we have of getting the bill

through as we intended to become landmark legislation as a model for

the rest of the country.

If this is a model for the rest of the country, please be forewarned

-- DO NOT LET AUTISM SPEAKS ASSIST IN YOUR GRASS ROOTS EFFORTS. YOU

ARE MUCH BETTER OFF ON YOUR OWN.

W.

> > > >

> > > Recently, a leader of Autism Speaks

> > > indicated his desire to cause the " sense of a wave " in the states

> > > toward a larger National agenda.[...] In other words, an insurance

> > > bill is being prepared for passage that lacks any concrete assurance

> > > that it will actually help Pennsylvanians with autism and their

> > families.

> > > >

> > >

> > > If true, this would be consistent with the way AS operates

> > > politically. Like in PA where AS is lobbying an insurance industry

> > > friendly insurance bill, they did the same with the Combating Autism

> > > Act, working to pass a pharma friendly law that was stripped of

> > > meaningful language for autism-vaccine research.

> > >

> > > It would be interesting to hear AS's version of these PA events.

> > >

> > > Lenny

> > >

> >

>

[Guest guest]

,

can you just briefly tell us what was amended?>> Lenny:> > There are currently two sides to the issue:> > #1 -- side with Speaker O'Brien, who has a nephew with autism, who has> been the champion of all things autism for as long as this old girl> can remember > > #2 -- side with Autism Speaks, who are teaming up with legislators> from the Banking & Insurance industry, and pass the bill as amended.> > > I can tell you that Speaker O'Brien is pretty much in charge here. > Any change that is made has to go to the house for approval, since> Speaker O'Brien introduced the bill. As amended, and approved by> Autism Speaks, Speaker O'Brien WILL KILL HIS OWN BILL because Autism> Speaks completely F & $#^YT%$#* it up.> >

> > > > > >> > > Recently, a leader of Autism Speaks> > > indicated his desire to cause the "sense of a wave" in the states> > > toward a larger National agenda.[...] In other

words, an insurance> > > bill is being prepared for passage that lacks any concrete assurance> > > that it will actually help Pennsylvanians with autism and their> > families. > > > >> > > > > > If true, this would be consistent with the way AS operates> > > politically. Like in PA where AS is lobbying an insurance industry> > > friendly insurance bill, they did the same with the Combating Autism> > > Act, working to pass a pharma friendly law that was stripped of> > > meaningful language for autism-vaccine research.> > > > > > It would be interesting to hear AS's version of these PA events.> > > > > > Lenny> > >> >>

[Guest guest]

Yes.....

The insurance companies took out all of our medical necessity

criteria, basically leaving it up to them to decide who receives

services and who doesn't.

They also say that if the child doesn't make progress within XX time,

they can't receive services.

Also....they changed the criteria and definition of who is qualified

to do ABA therapy, and the definition of ABA therapy.

This organization has some HUGE CAJONES to come into OUR state and

take OUR bill and make amendments without even ASKING for the approval

of the Speaker of the House and individuals who actually CRAFTED the

bill??? Can you imagine?

We are livid and are on a warpath.....

> > > > >

> > > > Recently, a leader of Autism Speaks

> > > > indicated his desire to cause the " sense of a wave " in the states

> > > > toward a larger National agenda.[...] In other words, an insurance

> > > > bill is being prepared for passage that lacks any concrete

assurance

> > > > that it will actually help Pennsylvanians with autism and their

> > > families.

> > > > >

> > > >

> > > > If true, this would be consistent with the way AS operates

> > > > politically. Like in PA where AS is lobbying an insurance industry

> > > > friendly insurance bill, they did the same with the Combating

Autism

> > > > Act, working to pass a pharma friendly law that was stripped of

> > > > meaningful language for autism-vaccine research.

> > > >

> > > > It would be interesting to hear AS's version of these PA events.

> > > >

> > > > Lenny

> > > >

> > >

> >

>

[Guest guest]

In other words, it's no longer a mandatory insurance plan to cover autistic kids.?

Subject: Re: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 7:37 PM

Yes.....The insurance companies took out all of our medical necessitycriteria, basically leaving it up to them to decide who receivesservices and who doesn't.They also say that if the child doesn't make progress within XX time,they can't receive services.Also....they changed the criteria and definition of who is qualifiedto do ABA therapy, and the definition of ABA therapy.This organization has some HUGE CAJONES to come into OUR state andtake OUR bill and make amendments without even ASKING for the approvalof the Speaker of the House and individuals who actually CRAFTED thebill??? Can you imagine?We are livid and are on a warpath.....> > > > >> > > > Recently, a leader of Autism Speaks> > > > indicated his desire to cause the "sense of a wave" in the states> > > > toward a larger National agenda.[...] In other words, an insurance> > > > bill is being prepared for passage that lacks any concreteassurance> > > > that it will actually help Pennsylvanians with autism and their> > > families. > > > > >> > > > > > > > If true, this would be consistent with the way AS operates> > > > politically. Like in PA where AS is lobbying an

insurance industry> > > > friendly insurance bill, they did the same with the CombatingAutism> > > > Act, working to pass a pharma friendly law that was stripped of> > > > meaningful language for autism-vaccine research.> > > > > > > > It would be interesting to hear AS's version of these PA events.> > > > > > > > Lenny> > > >> > >> >>

[Guest guest]

You got it baby.

> > > > > >

> > > > > Recently, a leader of Autism Speaks

> > > > > indicated his desire to cause the " sense of a wave " in the

states

> > > > > toward a larger National agenda.[...] In other words, an

insurance

> > > > > bill is being prepared for passage that lacks any concrete

> assurance

> > > > > that it will actually help Pennsylvanians with autism and their

> > > > families.

> > > > > >

> > > > >

> > > > > If true, this would be consistent with the way AS operates

> > > > > politically. Like in PA where AS is lobbying an insurance

industry

> > > > > friendly insurance bill, they did the same with the Combating

> Autism

> > > > > Act, working to pass a pharma friendly law that was stripped of

> > > > > meaningful language for autism-vaccine research.

> > > > >

> > > > > It would be interesting to hear AS's version of these PA events.

> > > > >

> > > > > Lenny

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Can you forward that email to the list so that we all can see it?

Subject: Re: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 7:25 PMAnother update:

Autism Speaks has now taken a stance against ALL PA ADVOCATES and

sided with the bill. A mass email was sent out by Reynolds

Hendrix of AS urging PA parents to support the bill. This has now

become a "pissing contest" between the Autism Speaks machine and PA

grassroots organizations who have been working together for years.

The bill's AUTHOR and SPONSOR are both denouncing it as an "empty

promise" and have promised to KILL THEIR OWN BILL if it goes to the

floor as amended by AS and the Banking & Insurance Committee.

Autism Speaks has ruined every chance we have of getting the bill

through as we intended to become landmark legislation as a model for

the rest of the country.

If this is a model for the rest of the country, please be forewarned

-- DO NOT LET AUTISM SPEAKS ASSIST IN YOUR GRASS ROOTS EFFORTS. YOU

ARE MUCH BETTER OFF ON YOUR OWN.

W.

> > > >

> > > Recently, a leader of Autism Speaks

> > > indicated his desire to cause the "sense of a wave" in

the states

> > > toward a larger National agenda.[...] In other words, an

insurance

> > > bill is being prepared for passage that lacks any concrete

assurance

> > > that it will actually help Pennsylvanians with autism and their

> > families. > > > >

> > > > > > If true, this would be consistent with the way AS operates

> > > politically. Like in PA where AS is lobbying an insurance

industry

> > > friendly insurance bill, they did the same with the Combating

Autism

> > > Act, working to pass a pharma friendly law that was stripped of

> > > meaningful language for autism-vaccine research.

> > > > > > It would be interesting to hear AS's version of these PA

events.

> > > > > > Lenny

> > >

> >

>

------------------------------------

[Guest guest]

It's time for lawmakers to listen.

Dear Pennsylvania Autism Advocate,

We have news to report! The rally on Wednesday was a tremendous

success. Thanks to all who participated and to those who couldn't

come but demonstrated by phone. Your voices were heard and HB 1150 is

once again...on the move!

Yesterday, Senator Don White agreed to allow HB 1150 to go to a vote.

After some deliberation, and negotiation, the bill did undergo some

revisions but successfully has passed the Banking & Insurance

Committee last night. The bill also passed the Appropriations

Committee on Friday afternoon. Autism Speaks supports passage by the

Pennsylvania Senate of HB1150, a bill which answers the discrimination

against some children with autism and their families by Pennsylvania's

insurance industry by requiring insurance coverage for autism services.

From here it will go to the Senate floor then back to the House so

that they can decide if they agree with the amendments made to the

bill in the Senate. Once the House and Senate settle on, and pass a

bill, it will head to Governor Rendell's desk for approval to finally

become law.

So...WHAT CAN YOU DO TO HELP NOW?

1. Please stay tuned to emails. If we need your help in burg

again, chances are it will be 24 hours or less advance notice. We try

to get these emails out as quickly as we can. For those within a 2

hour driving time of burg, please just stay on " activation red

alert " between now and July 5th. Live voters can make all the difference.

2. Please call Don White and thank him for moving HB 1150 to a vote

by dialing .

3. Please call your own Senator and ask them to support HB 1150

because it is the right thing to do! Remind them of how important

this is to your family. Remind them that the Heath Care Cost

Containment Council agrees that this insurance mandate is different

and will actually save the state of Pennsylvania millions of dollars.

It is the first time they have recommended a mandate in over TWENTY

YEARS!

4. Please forward this email to anyone that will help from dropping

what they are doing to drive to burg or pick up the phone and

help you get this done to make Pennsylvania Lucky # 8 - to end autism

insurance discrimination.

Thing to think about: Have you ever picked up the phone to win $1000

from a radio station. If this bill passes the children with autism

win $36,000 per year until age 21 if they need it to get better. That

is worth dialing for until your fingers, and your friends fingers, and

their friends fingers just fall off!

For more information on HB 1150 or to find out who your senator is,

visit www.autismvotes.org.

Have a terrific weekend and we will keep you posted with any new

developments.

Happy Dialing!

Hendrix

Director, State Advocacy Relations

Autism Speaks

> > > > >

> > > > Recently, a leader of Autism Speaks

> > > > indicated his desire to cause the " sense of a wave " in

> the states

> > > > toward a larger National agenda.[...] In other words, an

> insurance

> > > > bill is being prepared for passage that lacks any concrete

> assurance

> > > > that it will actually help Pennsylvanians with autism and their

> > > families.

> > > > >

> > > >

> > > > If true, this would be consistent with the way AS operates

> > > > politically. Like in PA where AS is lobbying an insurance

> industry

> > > > friendly insurance bill, they did the same with the Combating

> Autism

> > > > Act, working to pass a pharma friendly law that was stripped of

> > > > meaningful language for autism-vaccine research.

> > > >

> > > > It would be interesting to hear AS's version of these PA

> events.

> > > >

> > > > Lenny

> > > >

> > >

> >

>

>

>

> ------------------------------------

>

>

[Guest guest]

Here's the email below (Who does AS think they are coming into OUR state and telling OUR senators what THEY think we NEED in Pennsylvania!!!)

It's time for lawmakers to listen.

Dear Pennsylvania Autism Advocate,

We

have news to report! The rally on Wednesday was a tremendous success.

Thanks to all who participated and to those who couldn't come but

demonstrated by phone. Your voices were heard and HB 1150 is once

again...on the move!

Yesterday,

Senator Don White agreed to allow HB 1150 to go to a vote. After some

deliberation, and negotiation, the bill did undergo some revisions but

successfully has passed the Banking & Insurance Committee last

night. The bill also passed the Appropriations Committee on Friday

afternoon. Autism Speaks supports passage by the Pennsylvania Senate of

HB1150, a bill which answers the discrimination against some children

with autism and their families by Pennsylvania's insurance industry

by requiring insurance coverage for autism services.

From

here it will go to the Senate floor then back to the House so that they

can decide if they agree with the amendments made to the bill in the

Senate. Once the House and Senate settle on, and pass a bill, it will

head to Governor Rendell's desk for approval to finally become law.

So...WHAT CAN YOU DO TO HELP NOW?

1.

Please stay tuned to emails. If we need your help in burg again,

chances are it will be 24 hours or less advance notice. We try to get

these emails out as quickly as we can. For those within a 2 hour

driving time of burg, please just stay on "activation red alert"

between now and July 5th. Live voters can make all the difference.

2. Please call Don White and thank him for moving HB 1150 to a vote by dialing .

3.

Please call your own Senator and ask them to support HB 1150 because it

is the right thing to do! Remind them of how important this is to your

family. Remind them that the Heath Care Cost Containment Council agrees

that this insurance mandate is different and will actually save the

state of Pennsylvania millions of dollars. It is the first time they

have recommended a mandate in over TWENTY YEARS!

4.

Please forward this email to anyone that will help from dropping what

they are doing to drive to burg or pick up the phone and help you

get this done to make Pennsylvania Lucky # 8 - to end autism insurance

discrimination.

Thing

to think about: Have you ever picked up the phone to win $1000 from a

radio station. If this bill passes the children with autism win

$36,000 per year until age 21 if they need it to get better. That is

worth dialing for until your fingers, and your friends fingers, and

their friends fingers just fall off!

For more information on HB 1150 or to find out who your senator is, visit www.autismvotes.org.

Have a terrific weekend and we will keep you posted with any new developments.

Happy Dialing!

Hendrix

Director, State Advocacy Relations

Autism Speaks > > > > >> > > > Recently, a leader of Autism Speaks> > > > indicated his desire to cause the "sense of a wave" in> the states> > > > toward a larger National agenda.[...] In other words, an> insurance> > > > bill is being prepared for passage that lacks any concrete> assurance> > > > that it will actually help Pennsylvanians with autism and their> > > families. > > > > >> > > > > > > > If true, this would be consistent with the way AS operates> > > > politically. Like in PA where AS is lobbying an insurance> industry> > > > friendly insurance bill, they did the same with the Combating> Autism> > > > Act, working to pass a pharma friendly law that was stripped of> > > > meaningful language for autism-vaccine research.> > > > > > > > It would be interesting to hear AS's version of these PA> events.> > > > > > > > Lenny> > > >> > >> >> > > > ------------------------------------> >

[Guest guest]

It would be nice to hear what A-CHAMP has to say about all this, eh?

Lenny

> > > > > >

> > > > > Recently, a leader of Autism Speaks

> > > > > indicated his desire to cause the " sense of a wave " in the

states

> > > > > toward a larger National agenda.[...] In other words, an

insurance

> > > > > bill is being prepared for passage that lacks any concrete

> assurance

> > > > > that it will actually help Pennsylvanians with autism and their

> > > > families.

> > > > > >

> > > > >

> > > > > If true, this would be consistent with the way AS operates

> > > > > politically. Like in PA where AS is lobbying an insurance

industry

> > > > > friendly insurance bill, they did the same with the Combating

> Autism

> > > > > Act, working to pass a pharma friendly law that was stripped of

> > > > > meaningful language for autism-vaccine research.

> > > > >

> > > > > It would be interesting to hear AS's version of these PA events.

> > > > >

> > > > > Lenny

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Yes it would.

CIndy

> > > > > > >

> > > > > > Recently, a leader of Autism Speaks

> > > > > > indicated his desire to cause the " sense of a wave " in the

> states

> > > > > > toward a larger National agenda.[...] In other words, an

> insurance

> > > > > > bill is being prepared for passage that lacks any concrete

> > assurance

> > > > > > that it will actually help Pennsylvanians with autism and

their

> > > > > families.

> > > > > > >

> > > > > >

> > > > > > If true, this would be consistent with the way AS operates

> > > > > > politically. Like in PA where AS is lobbying an insurance

> industry

> > > > > > friendly insurance bill, they did the same with the Combating

> > Autism

> > > > > > Act, working to pass a pharma friendly law that was

stripped of

> > > > > > meaningful language for autism-vaccine research.

> > > > > >

> > > > > > It would be interesting to hear AS's version of these PA

events.

> > > > > >

> > > > > > Lenny

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Well lets call this Senator and oppose the bill unless he changes hi meet the needs for PA. I would also express that you are very upset and that election time your not going to forget what they are doing.

Subject: Re: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 8:42 PM

Here's the email below (Who does AS think they are coming into OUR state and telling OUR senators what THEY think we NEED in Pennsylvania!!!)

It's time for lawmakers to listen.

Dear Pennsylvania Autism Advocate,

We have news to report! The rally on Wednesday was a tremendous success. Thanks to all who participated and to those who couldn't come but demonstrated by phone. Your voices were heard and HB 1150 is once again...on the move!

Yesterday, Senator Don White agreed to allow HB 1150 to go to a vote. After some deliberation, and negotiation, the bill did undergo some revisions but successfully has passed the Banking & Insurance Committee last night. The bill also passed the Appropriations Committee on Friday afternoon. Autism Speaks supports passage by the Pennsylvania Senate of HB1150, a bill which answers the discrimination against some children with autism and their families by Pennsylvania's insurance industry by requiring insurance coverage for autism

services.

From here it will go to the Senate floor then back to the House so that they can decide if they agree with the amendments made to the bill in the Senate. Once the House and Senate settle on, and pass a bill, it will head to Governor Rendell's desk for approval to finally become law.

So...WHAT CAN YOU DO TO HELP NOW?

1. Please stay tuned to emails. If we need your help in burg again, chances are it will be 24 hours or less advance notice. We try to get these emails out as quickly as we can. For those within a 2 hour driving time of burg, please just stay on "activation red alert" between now and July 5th. Live voters can make all the difference.

2. Please call Don White and thank him for moving HB 1150 to a vote by dialing .

3. Please call your own Senator and ask them to support HB 1150 because it is the right thing to do! Remind them of how important this is to your family. Remind them that the Heath Care Cost Containment Council agrees that this insurance mandate is different and will actually save the state of Pennsylvania millions of dollars. It is the first time they have recommended a mandate in over TWENTY YEARS!

4. Please forward this email to anyone that will help from dropping what they are doing to drive to burg or pick up the phone and help you get this done to make Pennsylvania Lucky # 8 - to end autism insurance discrimination.

Thing to think about: Have you ever picked up the phone to win $1000 from a radio station. If this bill passes the children with autism win $36,000 per year until age 21 if they need it to get better. That is worth dialing for until your fingers, and your friends fingers, and their friends fingers just fall off!

For more information on HB 1150 or to find out who your senator is, visit www.autismvotes.org.

Have a terrific weekend and we will keep you posted with any new developments.

Happy Dialing!

Hendrix

Director, State Advocacy Relations

Autism Speaks > > > > >> > > > Recently, a leader of Autism Speaks> > > > indicated his desire to cause the "sense of a wave" in> the states> > > > toward a larger National agenda.[...] In other words, an> insurance> > > > bill is being prepared for passage that lacks any concrete> assurance> > > > that it will actually help Pennsylvanians with autism and their> > > families. > > > > >> > > > > > > > If true, this would be consistent with the way AS operates> > > > politically. Like in PA where AS is lobbying an insurance> industry> > > > friendly insurance bill, they did the same with the Combating> Autism>

> > > Act, working to pass a pharma friendly law that was stripped of> > > > meaningful language for autism-vaccine research.> > > > > > > > It would be interesting to hear AS's version of these PA> events.> > > > > > > > Lenny> > > >> > >> >> > > > ------------------------------------> >

[Guest guest]

First of all, he is running unopposed. Secondly, he has publicly

stated that he DOES NOT CARE if the autism community rings the phones

off the hook. It doesn't affect him.

And no, I'm not kidding.

> > > > > >

> > > > > Recently, a leader of Autism Speaks

> > > > > indicated his desire to cause the " sense of a wave " in

> > the states

> > > > > toward a larger National agenda.[...] In other words, an

> > insurance

> > > > > bill is being prepared for passage that lacks any concrete

> > assurance

> > > > > that it will actually help Pennsylvanians with autism and their

> > > > families.

> > > > > >

> > > > >

> > > > > If true, this would be consistent with the way AS operates

> > > > > politically. Like in PA where AS is lobbying an insurance

> > industry

> > > > > friendly insurance bill, they did the same with the Combating

> > Autism

> > > > > Act, working to pass a pharma friendly law that was stripped of

> > > > > meaningful language for autism-vaccine research.

> > > > >

> > > > > It would be interesting to hear AS's version of these PA

> > events.

> > > > >

> > > > > Lenny

> > > > >

> > > >

> > >

> >

> >

> >

> > ------------------------------------

> >

> >