June 27, 2008

Autism Speaks Undercuts the Children of PA

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.


Rachel Keslensky said...

Thank you for posting this.

I would love to include this as evidence on my Autism Speaks lens (my attempts to collect everything I know and loathe about Autism Speaks in one place, while allowing others to add to it as well) , but unfortunately I don't seem to have a complete grasp on the situation or, more importantly, how to parse it down into a small enough sound byte for the purposes of debate.

So tell me if I've got this right: Perfectly good bill to fund autism treatments is stalled, and Autism Speaks turns it into... what, exactly? Obviously not as good a bill, but what exactly is it now?

K Fuller said...

Taking away from some so that everyone can have some...Isn't that socialism? We all want every Autistic child to be recovered and have every single thing they need,but states need examples of working systems, so the methods used can be followed and improved. How did Autism Speaks get so much power so fast?

Anonymous said...

Jim Bouder the primary writer of the original bill and the CFO of my sons school is finally learning what I have been trying to tell him all along about AS. Hopefully, he and Dennis to get this fixed. It's a shame when a parent whose insightfulness is ignored for the "promise" of a big organizations help.

BTW, neither the original bill or this watered down version is going to aid parents who are using bio-medical approaches to help their children.

Anonymous said...

I would be careful about jumping to conclusions on this issue.

This sounds identical to what happened with the CAA and there were divisions within our community on that as well.

But it passed, and now we've got an expanded IACC with folks from our community seated on it. They are currently working on the Strategic Plan to determine where research money will be directed and we are trying to get an AAB set up as well -- all a part of the CAA bill.

It looks like this original bill didn't pass as written (no surprise), compromises were issued, and now we've got division. And I'll bet the insurance companies had more to do with it then AS.

One camp wants the original bill without exception. The other camp is willing to accept the compromises. Exactly what went on with CAA.

I'm guessing Shelley Reynolds (UA President and AS's Government Affairs person) is probably thinking realistically about what can get passed. In other words, incremental steps and getting a bill passed is better than *nothing* getting passed.

Again, I don't know all the details, but I would just caution and remind everyone that there are *two sides* and strategies to every story.

I know Shelley. She would never *sell out* any of our children.


Ginger Taylor said...

"incremental steps and getting a bill passed is better than *nothing* getting passed."

But is it Kelli?

Unless it actually ends up helping children in the way they need to be helped, I don't know that it is.

CAA is a good example.

Chandler's live has not change any way, nor has the life of any other child with autism that I know of, because of the passage of that bill.

Will it someday? Who knows. Both government and ngos can use up a lot of resources that never actually impact the people it was intended to help. Even when you start with a GOOD bill, by the time things actually make it to the child, they still often get the shaft unless everyone whose hands it went through in between was honest and did their job in the best interests of those children.

How often does that happen?

If that was the norm, none of us would be here in the first place.

I had originally titled this post 'Reality v. Perception', to focus the discussion on the phenom that a bunch of high profile busy work can take place, making the public think that officials are fulfilling their duty to the disabled, with out the disabled actually being helped.

Maybe we need to start working backward to figure out how to best get help for our kids. What is helping them now and how did that come about?

What immediately comes to mind is Bernie, parent who did his own research to help his son (we pretty much are always doing that) and parents suing school systems to get them to provide services.

What legislation that has been passed before is being used to actually help our kids? (not being sarcastic, legit question)

Anonymous said...

"Will it someday? Who knows."


That's the point. This is *politics* we're talking about. And the reality is *politics* is all about give and take -- it's just the way it works. And 99.99% of the time it's all about *incrementialism* -- little steps to get to the bigger goal.

No bill ever gets passed on the first go around. And yeah, it takes time.

Politics will almost *never* get the individual, *immediate* help for our kids that we need. It's usually a long....drawn out process. But that should *NOT* equate to *therefore, it isn't necessary* so let's just chuck it.

In other words, politics is just *ONE ANGLE* of many in this fight.

Your example of Bernie has nothing to do with the *political angle*. His focus was in a different place. And yes, we need to do research on the private level (which GR has done is planning to do more of) BUT the government is going to continue doing research *with or without* our input and quite frankly, *that* was one of the major reasons why we needed to *stay at the table* during the whole CAA process. We wanted our input to count. And it is.

So you asked me,"What piece of legislation has helped our kids?" -- CAA. Not in the immediate, direct way that you're wanting but helping us nevertheless.

Because,in the end, it's the SCIENCE that is going to vindicate us and get the ultimate justice for our children

And so again, my main point in posting was that there are two-sides and strategies to every story/issue and I think we need to respect other parents point of views on how to approach issues.


Ginger Taylor said...

Politics requires compromise, no question there.

But the point that Jim is making in his letter is that the compromise here not only does not help, but may harm the kids of PA.

"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."

Now he has been working on this for two years while I haven't, so I am taking his word for it here.

The fact that Shelly is involved gives me a little bit of encouragement that it might not end up to be a disaster, however; I am not sure that if you and I went to work for AS tomorrow we would be given the freedom to oppose insurance companies with the vigor that might be appropriate.

And you and I are QUITE focused on doing the right thing all the way.

Plus Jim is reporting that the current bill was pretty much written by the insurance companies. That does not bode well for kids. There will all kinds of loopholes for them to slip through.

As for the Bernie and other stuff... I was just gettin' theoretical and thinking about change over the broad spectrum. Getting away from the politics specifically for a moment and trying to think a little creatively on how to get things done effectively on the whole.

If you want to donate money to a cause, the smart bet is to give to the group that has already positively impacted the life of the intended beneficiary in the real world.

Find a child whose life was changed for the better, ask what helped, and follow that path up to the top and see where it leads.

That is a 'healthy pathway', if you will, and should be taken advantage of for more positive change.

Perhaps we need to start thinking along those lines in where to invest our relatively few resources.

While I have no idea how that would possibly work for insurance coverage, setting up our own system has worked for us as far as the medical side of this has gone.

Medicine was not interested in helping us, so we did our own research, came up with our own treatments, host our own conferences and DAN is our own little medical college.

Do we try to replicate that model with other aspects of autism care?

(Since insurance is basically the healthy people in the plan paying for the sick in the plan, an insurance company that focused on autism families would go broke right quick, so again, don't know how this applies in this specific case)

This arguement in our community started on Page 1 of Evidence of Harm as we saw one group of parents stay completely status quo and found Cure Autism Now, another completely oppose the status status quo and found ACHAMP and a third land somewhere in the middle with Safe Minds.

And none of those approaches are "wrong" unless they stop helping and start harming kids. I am sure we can all agree on that, I guess it is where the line between the two actually falls that we will always argue about.

Jim says that the 'harm' is probably what is happening here.

Has anyone heard from Shelly on this?

Ginger Taylor said...


Try getting a hold of Jim directly.

Anonymous said...

"another completely oppose the status status quo and found ACHAMP and a third land somewhere in the middle with Safe Minds."

*This* is where the problem originates.

Why would you think that SafeMinds is not opposed to the status quo just because of the *way* that they approach the issue?

I work very closely with Mark Blaxill and Jim Moody (two of my closest friends in this community) and I can *guarantee* that everything we do is all about *changing the status quo*!!!

This is where all the *infighting* comes into play. How one group chooses to approach and change the status quo *MAY NOT* be how another group chooses to approach and change the status quo.

"I guess it is where the line between the two actually falls that we will always argue about."

BINGO. So my question to you is....who gets to decide where that line is? Cuz what one group deems is *crossing the line* another group may say *it's not crossing the line*....

This is what happened with CAA, push for a new IOM, etc.

We had individuals in this community *literally* opposing us every step of the way just because *they* didn't agree with what we were doing and/or our approach to changing the status quo.

This is why it is soooo very important for parents to respect each other *EVEN IF THEY DON'T AGREE ON APPROACH*.

And it's why we have the diversity of groups. We tend to gravitate towards the group (approach) that works for us. And so I say, "More power to you."

Do what you feel you need to do to help your child. Plain and simple.

And if my idea on how to do that differs from your idea on how to do that -- no one has the right to tell the other parent that *they're wrong* cuz they don't accept my idea or approach on how to do things.

Cuz let's face it. We're never all going to agree on anything.

So we may as well respect each other in the process.

Ginger Taylor said...

status quo was actually the wrong phrase completely.

I meant more working within or with out the current systems/constructs

Excuse me... my brain is fried at the moment. I will reply to this later when I can think properly again.

Anonymous said...

PS...Just for clarification: Ginger and I are friends and we've e-mailed privately about all of this -- just so no one thinks we're *fighting* ;-)

Lively debate as Ginger said.

PS...Gave Shelley a heads up on this but don't know if she'll respond or not.

Jim said...

"the greater good'.. I didn't know that AS hired Gellert Grindlewald as their new SpokesWizard! And from beyond the grave, no less! Serves them right!


Wade Rankin said...


The meassage we're getting from the recent bills in Pennsylvania and Lousiana, and from the CAA before that, is that AS appears to be more interested in passing bills -- any bills -- than in encouraging bills of substance. A lot of us are growing impatient with the process of building "Awareness;" it would be nice to see some results.

With all due respect, the CAA is all about maintaining the status quo. The coalition that got that one passed was built upon the need to get research -- real research -- into the causes and effective treatments into autism. AS cheerfully stabbed us all in the back on that one so that they could trumpet the fact that THEY got a big law passed. And now we're seeing more of the same in state legislatures.

Is a "seat at the table" so important that we should be willing to accept that seat at the kiddie table while the big people sit at the main table having the real discussion?

Judith U. said...

Here's the most recent statement from Autism Speaks. Please note their commitment to follow the Speaker's lead on this.


Last evening the Pennsylvania Senate Appropriations Committee passed the autism insurance reform bill, 26-0, with the support of bill sponsor Senator Jane Orie. The Leadership of the Senate pledged a vote on the bill on the Senate floor on Sunday evening.

The vote was unanimous, with the Democrats enthusiastically joining the GOP majority, and the bill now moving forward, if signed into law, would be the strongest autism insurance mandate yet achieved in the nation.

The Pennsylvania bill provides $36,000 a year for Applied Behavior Analysis and other necessary treatments up to age 21, with no lifetime cap. It also creates a first ever, under Pennsylvania law, expedited appeals procedure for denied claims, as a safeguard to ensure the law is followed. The bill also turns the existing state welfare program for autism into a statutory requirement, to ensure that those who receive government provided services can continue to do so, while allowing for the development of a private sector delivery system with insurance reimbursement, offering families an alternative to coverage through Medicaid.

The Pennsylvania bill ends discrimination for individuals with autism, and provides them the same medical necessity standards as afforded individuals with cancer, diabetes, and the common cold, allowing individuals with autism to be treated as all others are in the private insurance market.

Individuals with autism deserve the same quality of care that all individuals with chronic and severe health conditions receive.

We have the utmost respect for Speaker of the House Dennis O’Brien. Speaker O’Brien has dedicated his career to improving the lives of individuals with autism. There would be no bill at all without Speaker O’Brien’s passionate leadership for these many years. We trust his judgment as to how the House should respond to the Senate bill.

Please call your own Senator and ask them to support HB 1150. Remind them of how important this is to your family.

For more information on HB 1150 and the latest developments in the Pennsylvania legislature, please stay tuned to www.autismvotes.org/pennsylvania .

Elizabeth Emken
Vice President of Government Relations
Autism Speaks

Anonymous said...

And so now we know the *full story* as Paul Harvey would so eloquently say.

With all due respect Wade, AS didn't stab anyone in the back regarding CAA.

As someone who was intimately involved in that process (directly negotiating with Steve Northrup, Jen Vesey and Ryan Long) I can guarantee that we were sitting at the "big kid's table" and making adjustments to the bill as it wound its way through both the Senate and the House.

Now, whether you personally agree with the outcome of that whole process is a completely different issue.

Again, I will disagree with you 100% if you believed we should have walked away from that process.

Because the *fact* is if we had walked away and thrown up our hands because it wasn't the original bill that went in we'd be in a whole lot of hurt right now.

As a result of the passing of that bill, the IACC was expanded and we have more individuals on the Committee to help direct research dollars. The strategic plan is being developed as we speak with individuals like Mark Blaxill and Lyn Redwood involved in the process.

Again, you can disagree if you want -- I respect your opinion. But it's exactly that -- YOUR opinion.



Wade Rankin said...


You have been in this battle longer than I, and you have put far more skins on the wall than have I, so you are indeed more than entitled to disagree with me. But my opinion -- and as you point out, it is just my opinion -- AS has acted with arrogance and has wasted the power and funding it has amassed

Anonymous said...


That may all be well and true, but what bothers me is when one set of parents *publicly* attacks another set of parents (many parents belong to AS) and only one side of the story is presented.

That's just not right.

Debate is fine. But for a *debate* to occur, you've got to be presented with both sides.

In this case, that didn't happen and *that* was the point of my original post.



Judith U. said...

Here is some clarification of the issue from Jim Bouder, one of the key players in Pennsylvania.



I’ve been asked by many of you to say something about the situation that has arisen within the autism community in Pennsylvania. The situation is that together we have achieved this marvelous victory. Whatever differences we had in the past over strategy and tactics, those differences have resolved themselves in our joint accomplishment.

I believe, as a starting point, there are three facts we can all acknowledge: (1) Autism Speaks' actions helped facilitate the necessary release of HB 1150 from the Senate Banking & Insurance Committee and (2) Pennsylvania's parents and advocates succeeded in providing Speaker O'Brien with the additional grassroots support he needed in order to make the necessary changes to the legislation, and (3) HB 1150, the strongest autism bill in the nation, was signed into law by Governor Edward G. Rendell yesterday as Act 62 of 2008. If we can all take a step back and recognized that 1 + 2 = 3, then we can begin moving on together toward bigger and better things. While we can and probably will continue to struggle with the details surrounding 1 and 2, we should all be able to agree that getting to 3 is a very, very good thing.

There are many, many people who deserve our thanks - first and foremost to Speaker O'Brien, who continues to advocate for our children in Harrisburg with unequalled zeal, and his staff who did such a fine job supporting the Speaker's efforts behind the scenes. Also to Estelle Richman, who has quickly become a national leader in the quest to meet the needs of children with autism and, of course, Governor Rendell who has made passage of this legislation a priority for his Administration, and to those in the Departments of Welfare, State, and Insurance that devoted so much time to help us achieve our goals. In the Senate, Senator Orie is well deserving of our thanks, as is Senator White and his Chief of Staff, Joe Pittman, who also worked hard to make yesterday’s event a possibility. To my Vista family, you all have been remarkably supportive with both advice when I needed it and with patience at the times when this issue required my full attention. To Cindy Waelterman and Karen Woodings who did such a fine job getting the message out to the grassroots at the 11th hour. To Eric Scott who gained a grasp of the issues so quickly and provided much-valued assistance as we engaged in difficult negotiations with HB 1150's opponents. To all who submitted comments to HC4 or testified at the April 1 hearing. To every parent, grandparent, uncle, aunt, neighbor, and advocate that picked up their phone or sent an email or a fax to your legislator, great thanks belongs to you too.

Over the course of the past year, I have developed friendships with four people who comprise the backbone of the Autism Speaks Government Relations team in Pennsylvania. I deeply appreciate the year I've spent working with Eric Settle. Eric is a skilled lobbyist and I learned much from him - much that I hope to take to my next project. I sincerely hope our paths cross again in the not-so-distant future. Stuart Spielman has been a consistent and thoughtful sounding board and his feedback increased the quality of my technical filings and testimony offered in support of HB 1150. Anyone who questions Stuart's integrity simply doesn't know Stuart. Shelley Hendrix taught me much about the formerly unfamiliar territory of managing a grassroots push. She championed Louisiana's counterpart to or legislation and it became law exactly one week before Governor Rendell signed HB 1150. Her commitment to children with autism is unquestionable. Without doubt, Elizabeth Emken had become a valued friend and ally whose vision, in many respects, runs parallel with mine. Her drive to see our nation become a more hospitable place for people with autism is admirable. They are much deserving of all of our thanks and I look forward to working with them in the future.

And last but certainly not least, I thank my family for their support and patience as I joined you all in doing this good work.

HB 1150 being signed into law yesterday was a day worth celebrating. Pennsylvania's families and policymakers working together with Autism Speaks for more than a year to advance HB 1150 to a place where its opponents no longer had any credible excuses to let it die. We answered every question, we jumped through every hoop, and we cleared every obstacle. HB 1150 becoming law is an achievement that we have much to take pride in.

Going forward, we all need to remember the collaborations that got us here and we need to rebuild them and make them stronger. I intend to do what I can over the course of the coming months to encourage a dialogue that promotes our coming together as friends and, eventually, as a collaborative unit.

If you took the time to pass along my action alerts, I ask that you forward this message as well.

With kind regards,

Jim Bouder