July 3, 2008

Pennsylvania Tells Autism Speaks to Stop Talking

PA has spoken.

Pennsylvania Tells Autism Speaks to Stop Talking


Penn Family said...

The bill is passed. The Governor is set to sign it next Wednesday. All is well in PA. Families will benefit. But everyone is still sore at Autism Speaks. Why? A week ago, they helped get the bill out of the Senate where it had sat for almost a year. They managed to get the Senate Banking & Insurance Committee, which is bestowed to the insurance lobby, to cough up the bill with some concessions (remember this is politics). Sadly, this committee had the power to kill this bill. But they didn't. My guess is that Autism Speaks got them to budge...finally.

So the bill came back to the House, where it originated over a year ago. Speaker O'Brien and his team made some important amendments, got it passed unanimously and sent it back to the Senate. The Senate agreed, voted 49-1 (what's the problem with Senator Eichelberger?). Governor Rendell will now sign it. The drama is over.

So why is the story still about Autism Speaks and the "despicable" deal they cut with the PA Senate. Rather than jump on the "I hate Autism Speaks" gravy train, parents should look at the facts. All the iterations of HB 1150 can be found at http://www.legis.state.pa.us/cfdocs/billinfo/billinfo.cfm?syear=2007&sind=0&body=H&type=B&bn=1150
If you take the time to look at the difference between the amended Senate version of the bill (the one that everyone said would harm the children in PA) and the final version of the bill (the one that is now lauded as the best autism insurance bill in the country) you will see the following differences:


2) changes the length of a diagnostic assessment from 12 months to "NOT LESS THAN" 12 months

3) punctuation (e.g. commas, plural words)

That's it folks. Those are the only amendments that were made to the bill that AutismLink described as being "stripped of all useful language". I encourage everyone to see for themselves.

Although Autism Speaks is far from perfect, they seem to have played a critical role in getting this bill passed. In addition, they endured a lot of mud slinging without fighting back. My guess is that they realize how counter-productive that would be to the end game. Hats off to an autism organization that chooses not to engage in these negative behaviors.

I have no allegiance to any organization. I'm just a parent from PA who chooses to look at the facts and not let my emotions take the best of me. Watching the autism community bash each other is very sad. It's not useful. I wish we could channel our energies towards each other and work together to help all our kids.

Cindy W. said...

Oh please, even the Speaker himself said that AS interfered, as well as all of the advocates working on this.

They are an organization that needs to go away.

Penn Family said...

And depend on local organizations run by unstable people such as yourself who cause more fragmentation than help for my family? No thanks. AutismLink is just as guilty of causing harm as Autism Speaks, in fact probably more. God bless America!

Judith U. said...

A press release from Autism Link doesn't equate to hard news.

This is a time from celebration, not fragmentation. Congrats to all in Pennsylvania for coming together and passing meaningful legislation!

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