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Autism Speaks Undercuts the Children of PA

Posted Aug 24 2008 1:31pm
What Autism Speaks is doing in PA is just another example of how they use their considerable resources to bring about the PERCEPTION that our kids are being helped, rather than giving them the ACTUAL help they need.

Families who have worked on the insurance bill in PA for years are now being undercut by Autism Speaks, because they want to use the PA legislation, not in the best interests of the children of PA, but to build a national movement to get autism covered in all the states.

Don't get me wrong... I want that national movement to happen, but we DO NOT compromise the treatment and care of the children of Pennsylvania to do it.

It is just another example of crappy 'greater good' logic that takes from one child to give to another. Each child needs what they need, an it is our job as a society to give it to them.

Autism Speaks... stop using children THAT ARE NOT YOURS to advance your agenda that will not be best for those specific children!


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

It passed:

Proponents become opponents on autism bill

Intelligencer Journal

Published: Jun 30, 2008

00:06 EST

By DAVE PIDGEON, Bird's-Eye View

Private insurance companies will continue denying coverage of autism treatments under a bill passed 49-1 by the state Senate on Sunday, opponents said prior to the vote.

The opponents originally stood as proponents of a mandate forcing private coverage, but the final version of the bill was so amended, they said, the proposed mandate would actually hurt families dealing with autism.

The original version — authored by state House Speaker Dennis O'Brien, who slammed the final Senate revisions prior to its passage Sunday — would have forced insurance

companies to cover autism treatments up to $36,000, with the state's Medical Assistance program helping families with any costs above the cap.

A report commissioned by the Pennsylvania Health Care Cost Containment Council said

last week that the original mandate would end up costing all insurance customers about $1 per month.

The Senate Banking & Insurance Committee, however, amended the bill last week.

According to O'Brien and others who once supported the bill, the revisions passed Sunday by the Senate allow insurance companies to decide for themselves what services to cover.

While the bill sets up a system to challenge any denial, disappointed former supporters said the bill now makes affording vital but expensive treatments prohibitive.

"When insurers deny coverage, families will have no alternative but to reach into their own pockets to pay for the medical treatment," Estelle Richman, a one-time supporter and secretary of the Department of Public Welfare, wrote in a letter Sunday to Republican Sen. Don White, a former insurance broker and chairman of the Banking & Insurance Committee. "This means they will be worse off ... ."

O'Brien, who has placed much of his legacy as a legislator into getting this mandate

passed, called the bill an "illusion" of insurance coverage for autistic children.

"That's because the current version gives the insurance companies a back-door way to

continue denying coverage for autism services," he wrote in a statement. "Insurance

companies will continue to second-guess these kids' doctors and refuse to pay for autism services. The Senate-amended version gives them the power to unilaterally deny that coverage ... ."

Also rejecting the new bill were AutismLink and the Autism Center of Pittsburgh, but the national organization Autism Speaks announced its support of the current version as did Sen. Jane Orie, co-chair of the Autism Caucus.

"The bill now moving forward, if signed into law, would be the strongest autism insurance mandate yet achieved in the nation," said Elizabeth Emken, vice president of government relations for Autism Speaks.

Supporters also trumpet other amendments to the bill, including government oversight of a pending merger of two large Pennsylvania insurance companies — Highmark and

Independence Blue Cross — and insurance coverage of colorectal cancer screenings.

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