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

[Guest guest]

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

Sounds like that is warranted. Personally I am a not a big fan of Autism Speaks. I would love to know what we in other states can do help and how we as a community who are not pro Autism speaks can get that message out? Short of going back to my signature that used to say "Autism Speaks does not speak for the Primer's, McCarthy and Tacanow.org Speak for us" I am at a loss on how to fight this kind of thing.

Primer who lives in Oceanside but is in Carlsbad Unified School District

~All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. -- Arthur Schopenhauer

~Well-behaved women seldom make history~ Laurel Thatcher Ulrich

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

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]

, I can't speak for anyone else, but I have been unable to keep up with the volume of all of our emails lately. I would greatly appreciate it. if you or someone else here, could summarize what is going on in this thread. It looks like AS is in deep doodoo once again, not surprisingly. What is the purpose of this group (i.e., AS?), other than to divert funds to projects which will not get anywhere close to finding the "roots" of autism?? What a waste of time and effort,... as much as I would like to say differently, sadly, I have "sucked out" (my own made-up term) of warning others of Autism Speaks. I won't participate in anything related to AS, but I have to admit that I have not done as much as possible to derail their misguided efforts either. It could be helpful, if we could convince others that Autism Speaks is not a worthwhile group, and help direct folks to other autism groups which are

making an effort to conduct environmental research, etc.. Argghh, Aasaangndon1994 wrote: 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]

Nope, is 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

> > > > > >

> > > > >

> > > >

> > >

> > >

> > >

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

> > >

> > >

[Guest guest]

and third he has AS backing him.

Subject: Re: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 10:25 PM

First of all, he is running unopposed. Secondly, he has publiclystated that he DOES NOT CARE if the autism community rings the phonesoff 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> > > > >> > > >> > >> > > > > > > > ------------ --------- --------- ------> > > >

[Guest guest]

What DOES this Senator care about? Just wondering, Aasaangndon1994 wrote: Nope, is 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 andtheir> > > > > 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 wasstripped of> > > > > > meaningful language for autism-vaccine research.> > > > > > > > > > > > It would be interesting to hear AS's version of these PA> > > events.> > > > > > > > > > > >

Lenny> > > > > >> > > > >> > > >> > > > > > > > > > > > ------------------------------------> > > > > >

[Guest guest]

He also happens to be chair of the Insurance and Banking committee.

> > > > > > > >

> > > > > > > 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]

The latest from Jim Bouder:

INFORMATION ALERT

Pennsylvania Autism Insurance Bill

Dear Friends:

There has been a lot of information circulated in the last several

days about the autism insurance bill now pending in the Pennsylvania

General Assembly. Unfortunately, much of that information is simply

inaccurate and confusing.

Here is the straight story. When our champion in the General

Assembly, Speaker Dennis O'Brien, introduced HB 1150 in the House of

Representatives last year, it was a good bill that promised to help

our community. That is no surprise given Denny's unfailing support

for Pennsylvanians with autism and their families for decades.

But, in recent weeks, the insurance industry, its lobbyists and its

allies in the legislature have so butchered the bill that it barely

resembles the bill Denny introduced more than a year ago. It is now a

bill mostly written by insurance lobbyists to be sure that health

insurers will have every opportunity to deny coverage for services our

people desperately need.

In other words, the bill passed by the Senate Banking and Insurance

Committee chaired by Sen. Don White not only will not help the autism

community, it will likely harm it.

You may have received information from Autism Speaks suggesting that

you should support the bill in its current form. You should consider

the source. Autism Speaks sent people into Pennsylvania with the

promise that they would support Denny O'Brien and his efforts to enact

a true and meaningful autism insurance bill. But now that the bill

has been mutilated to the point at which Denny himself believes it

would be harmful to our community, Autism Speaks is still pushing for

its passage. Why? Perhaps because Autism Speaks is more interested

in checking off a box on the list of states in which it is trying to

have autism insurance legislation enacted. Perhaps because Autism

Speaks is more interested in checking off that box than in being truly

certain that the bill would be good for persons with autism and their

families.

Perhaps because Autism Speaks and its lobbyists will now move on from

Pennsylvania and will not have to contend with the harm the current

version of the bill will likely cause.

It is time that the Pennsylvania autism community seize control of its

own future and not be lead by an organization from outside our state.

A group with its own agenda. A group that has not shared our

history. And a group that will not share our future. We have our own

leader in the General Assembly, a man who has been in the trenches

with us for years and who has devoted his career to our community.

Denny O'Brien has earned our trust. And no group of carpetbaggers

from outside our state should make us doubt Denny's judgment. Denny

studied the issue. He introduced the bill. He pushed it along. And,

now, he's watched what the insurance lobbyists and their allies in the

General Assembly have done to it. Denny does not want the current

version of his bill to become law because he knows it would likely

harm the very people it was meant to help.

Please call or e-mail your state senator and your state

representative. You can find their phone numbers and e-mail addresses

by going to http://www.legis.state.pa.us/ and typing your ZIP code

into the box at the top, right side of the page. Tell your

legislators that they must not support Sen. White's version of the

autism insurance bill. Tell them that the only version of the bill

they should support is one endorsed by Speaker Dennis O'Brien.

When information is sent to you, consider the source, and do not allow

yourself to be lead by those from outside Pennsylvania who have their

own agendas.

Jim Bouder

> > > > > > > > >

> > > > > > > > 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]

probably money and power

Nope, is 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 andtheir> > > > > 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 wasstripped of> > > > > > meaningful language for autism-vaccine research.> > > > > > > > > > > > It would be interesting to hear AS's version of these PA> > > events.> > > > > > > >

> > > > Lenny> > > > > >> > > > >> > > >> > > > > > > > > > > > ------------ --------- --------- ------> > > > > >

[Guest guest]

He's chairman of the Senate Banking and Insurance Committee... He's

out to protect the Insurance companies!

> > > > > > > >

> > > > > > > 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]

Perhaps some effort should be made, to let Autism Speaks know, that they "speak" for too darned few of us, and that many of us do not appreciate their misguided research dole-outs, when none of their dollars (which some of us helped raise) go towards needed environmental/vaccine studies. Somrthing to think about, Aasa Primer wrote: "We are

livid and are on a warpath....." Sounds like that is warranted. Personally I am a not a big fan of Autism Speaks. I would love to know what we in other states can do help and how we as a community who are not pro Autism speaks can get that message out? Short of going back to my signature that used to say "Autism Speaks does not speak for the Primer's, McCarthy and Tacanow.org Speak for us" I am at a loss on how to fight this kind of thing.

Primer who lives in Oceanside but is in Carlsbad Unified School District ~All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. -- Arthur Schopenhauer ~Well-behaved women seldom make history~ Laurel Thatcher Ulrich Re: Can I just tell you what Autism Speaks has done here in PA? 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]

I've already voiced that earlier this evening. I've also told them

that the folks in PA will be sure to spread *nationwide* the news of

how invaded our state and screwed our bill!!

> > > > > >

> > > > > 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]

like I said-money and power

Subject: Re: Can I just tell you what Autism Speaks has done here in PA?To: EOHarm Date: Friday, June 27, 2008, 10:49 PM

He's chairman of the Senate Banking and Insurance Committee... He'sout to protect the Insurance companies!> > > > > > > >> > > > >

> > 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 theCombating> > > > 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 they are on a mission to gather all sorts of feathers for their hat!

Have you seen their site www.autismvotes.org ??

>

> FORGIVE ME..HOW DID AUTISM SPEAKS GET INTO THIS ANYWAY? Lia

>

>

>

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

> fuel-efficient used cars.

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

>

[Guest guest]

Just do me a favor. Anyone who goes to the site

http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/

***Do NOT sign up for their emails. Unless you want to be included in

their number of supporters!!***

> >

> > FORGIVE ME..HOW DID AUTISM SPEAKS GET INTO THIS ANYWAY? Lia

> >

> >

> >

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

> > fuel-efficient used cars.

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

> >

>

[Guest guest]

you should run if he is in your district.

Primer who lives in Oceanside but is in Carlsbad Unified School District

~All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. -- Arthur Schopenhauer

~Well-behaved women seldom make history~ Laurel Thatcher Ulrich

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

First of all, he is running unopposed. Secondly, he has publiclystated that he DOES NOT CARE if the autism community rings the phonesoff 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> >

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

[Guest guest]

,

I don't think so. If the folks that have worked hard have laid a

solid foundation with legislors you can still win this back.

I'd urge folks to try. This has happened in other arenas. Folks work

hard to lay a grassroots foundation for years within volunteer work.

They are the ones sweating it out, trying to meet the needs of their

families, working a full time job and also working full time within

advocacy. So many of those people are on this list and we all should

be greatful for those efforts.

Believe me they are not lost, unrecognized, nor unappreciated.

The thing that is happened is money is now a factor within all of

this. If one platform were to be embraced and bills passed across

the country using that format, the folks doing so would essentially

be heros in the minds of many. What happens then, folks donate and

support that organization. Forget about the people who day in and

day out support families with kids who have challenging behaviors,

elope, get suspended from school, arrested, etc. So where does that

money go? The problem is it goes period and does not stay to support

the lifespan needs of so many folks.

Folks with specific agendas that have a cookie cutter remedy do not

know about how legislation works differently in each state nor how

the logistics of each state abilities to meet the needs of

individuals on the spectrum across the lifespan are. That is

essential because what also is happening is work that has taken

several years to develop services may now also be in sacraficed.

Folks can't swoop in and land a hole in one without knowing the

terrain of the green.

This is more harmful that folks realize and people should not sit

back and allow it to happen. Personally I was not happy with the way

the bill was written in MI. We have people who have been working at

this for many years, building those relationships with legislators

and providing a path for lifespan services and self-determination.

We've been told the bill may be changed to be age limited and also

contain financial restraints within age limits. This really being

done to allow for the focus to be on early intervention and ABA.

Some folks have already gotten on that ASD kids as a commodity

bandwagon and all of a sudden are getting ready to provide services.

My take is these bills are not to make folks rich. They are to

provide needed and necessary services specific to individual needs.

If folks want to sell out to achieve a cookie cutter agenda, folks

need to voice they are not in support of it.

This should not be happening like a business venture. We're not hear

to sell out other parts of the ASD community to only benefit some.

We need to fight for all affected and across the lifespan. That is

the morally and ethically right thing to do.

JMHO

> > > > >

> > > > 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]

They came in with the promise to help us get the bill through. They

met with Speaker o'Brien and promised to hire a lobbyist and help us.

When they got involved, the grassroots folks had already done the

work. It was passed unanimously in the house. Those of us who worked

hard on bill were furious because they came swooping in here for some

big press conference after doing basically NOTHING. Suzanne and Bob

came with some actor from the Sopranos and they took all the

credit for all the work we did.

Everyone said, it's okay , sometimes you have to take one for the

team. It's all about the kids, yadda yadda. This is a good thing,

blah blah.

Wonder how good they think it is now. I warned them repeatedly about

AS.......

>

> FORGIVE ME..HOW DID AUTISM SPEAKS GET INTO THIS ANYWAY? Lia

>

>

>

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

> fuel-efficient used cars.

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

>

[Guest guest]

I would, but......I inhaled.

;-)

> > > > > > >

> > > > > > 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]

We were working

on a similar bill here in MO this past spring. It did not pass. What info can I

pass on to my fellow parents so we are not blindsided in next legislative

session? Do you have any comments I can forward?

Aley

SW MO

From: EOHarm [mailto:EOHarm ] On Behalf Of autismlink

Sent: Friday, June 27, 2008 6:37

PM

To: EOHarm

Subject: Re: Can I just

tell you what Autism Speaks has done here in PA?

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]

Honestly, that's up to the Speaker. He's likely to kill his own bill

rather than let some crap piece of legislation go through. You guys

would like him -- salt of the earth -- nice guy. He helped us in

getting a Bureau of Autism Services and funding in the Gov's budget

for an adult waiver. He's been the champion of our cause for years.

Until AS came in......

> > > > > >

> > > > > 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]

All I can tell you is -- DO NOT LET AUTISM SPEAKS GET INVOLVED IN YOUR

EFFORTS. If you need help with the language of the bill, I will

certainly have Jim Bouder contact you. (He's the person who wrote it

in PA.)

Keep them the hell out of your efforts.

> > > > > >

> > > > > 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 fact, call A champ instead..........

> > > > > > >

> > > > > > 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]

The only down side is the one notice written towards people in PA that I saw said don't trust anyone from other states. So I am hesitate to post your story at other boards as I am from another state. That being said I did forward that one to my sister and her in-laws who are in PA with a little note from myself and my thoughts on AS asking them to please call their elected officials on your behalf.

If someone has a press release (I may have missed it) I would love to make sure the story gets told in other states.

Primer who lives in Oceanside but is in Carlsbad Unified School District

~All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. -- Arthur Schopenhauer

~Well-behaved women seldom make history~ Laurel Thatcher Ulrich

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

I've already voiced that earlier this evening. I've also told themthat the folks in PA will be sure to spread *nationwide* the news ofhow invaded our state and screwed our bill!!> > > > > >> > > > > Recently, a leader of Autism Speaks> > > > > indicated his desire to cause the "sense of a wave" in thestates> > > > > toward a larger National agenda.[...] In other words, aninsurance> > > > > 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 insuranceindustry> > > > > 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]

Those of us who inhaled grew up to vote;-)

Primer who lives in Oceanside but is in Carlsbad Unified School District

~All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. -- Arthur Schopenhauer

~Well-behaved women seldom make history~ Laurel Thatcher Ulrich

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

I would, but......I inhaled. ;-)> > > > > > >> > > > > > 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 andtheir> > > > > 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 wasstripped of> > > > > > meaningful language for autism-vaccine research.> > > > > > > > > > > > It would be interesting to hear AS's version of these PA> > > events.> > > > > > > > > > > > Lenny> > > > > >> > > > >> >

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

[Guest guest]

I've been getting emails from advocates in other states saying they

experienced the same thing with autism speaks.

KEEP THEM OUT OF YOUR EFFORTS.

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

> > > > > >

> > > > >

> > > >

> > >

> >

>

>

> Primer who lives in Oceansidebut is in CarlsbadUnifiedSchool

District

> ~All truth passes through three stages. First, it is ridiculed.

Second, it is violently opposed. Third, it is accepted as being

self-evident. -- Arthur Schopenhauer

> ~Well-behaved women seldom make history~ Laurel Thatcher Ulrich

>