I Love Missouri Governor Jay Nixon

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!

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

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.

I Love The South Carolina State House

Finally! Some rich white guys who get it!!

From SC Politics Today:

House overrides autism veto; bill now law

The House easily overrode Gov. Mark Sanford's veto of a bill Thursday extending insurance coverage to children with autism.

The vote was 114-0.

After voting, House members turned toward the balcony and gave families representing children who have the disorder a standing ovation.

Before the vote, Rep. B.R. Skelton, R-Pickens, chastised the governor for striking down the measure.

"He has four healthy children and I don't think he has ever met anybody who didn't have healthy children," Skelton said.

The Senate had previously overrode the veto, also unanimously.
The governor' s office maintains the provision will raise health care costs.

Insurance Has To Cover Autism in South Carolina!!

Wow. Wow.

From John Gilmore of A-CHAMP:

A coalition of parents of children with autism have won a stunning victory in South Carolina. Ryan's Law, a bill that will require private insurers to pay up to $50,000 per year for health care and services, including ABA, for people with autism overcame a Governor's veto today to become law. This is a victory of national significance. If this law can pass in South Carolina it can be passed in any state, if we have the organization, drive and fortitude displayed by the parents in South Carolina.

I am speechless in admiration for these indomitable advocates.

Lorri Unumb, the architect of this brilliant campaign, wrote this account of today's events:

As I’m sure you’ve heard by now from multiple sources, “Ryan’s Law” is finally law! Yippee!!! The last 24 hours have been an amazing, incredible roller coaster ride, as have the last 2 years.

As you all know, the governor vetoed our bill after 10:00 last night. (See veto message here: http://www.scgovernor.com/uploads/upload/S.20.pdf)
Despite this late notice, more than 50 of you showed up at the State House first thing this morning, wearing autism shirts, name tags, buttons, and highly visible ribbons made this morning by Margie Williamson (thanks, Margie!) We stood at the top of the State House escalators and accosted every possible legislator to ask for their vote one more time! We even had a little impromptu pep rally in the lobby when Sen. David Thomas, Sen. Joel Lourie, and Rep. Skipper Perry stopped by to thank us for our presence, encourage us, and give us last-minute tips on obtaining the needed 2/3 vote for an override.

The Senate acted on the veto first, probably by 11:00 or so this morning. Sen. Thomas of Greenville asked for unanimous consent to override the veto. There were a few comments and then a real scare when a senator from Anderson asked to hold up the vote for a while. Grumbles and mumbles ensued, and some other senators were clearly frustrated with him. He then backed off a little and said he just needed 2 or 3 minutes to study the governor’s veto statement. Things got confusing, but Lt. Gov. Andre Bauer honored his request, moved on to another bill, and then came right back to our veto issue. Senators Thomas and Malloy then pulled a 1-2 punch and managed to get the veto unanimously overridden without even going through a formal vote. All was said and done before we knew it, so our balcony gang crossed the lobby into the House chamber.

In the House, we waited for a LONG time while the House discussed lots of other matters. Then, I was sure our chance of getting on the agenda was lost when Speaker Pro Tem Smith and Speaker Harrell delivered long, passionate speeches as part of a tiff, shall we say, that’s going on this week between the House and the Senate. At that point, I was afraid we’d get lost in the crossfire and the debates over the two major bills they can’t agree on. Fortunately, our primary sponsors – Skipper Perry this year and Nathan Ballentine last year – pulled the Speaker aside and asked him to please take up the autism bill right before lunch. Speaker Harrell did just that.

Rep. Perry made a brief plea to the members for a quick, clean override. The Speaker was ready to call for a vote, and then another representative rose to speak. My heart stopped, because I had not spoken to this representative and had no idea what he wanted to say. I held my breath as Rep. B.R. Skelton started:
“My mama taught me that if you don’t have anything nice to say about a person, you don’t say anything at all. Well, I can’t think of anything nice to say about the governor’s veto of the autism bill.” I breathed a sigh of relief.

He then went on to relate what a constituent had said to him this morning. The constituent, a grandfather who called on behalf of Ryan’s Law and whose identity I don’t yet know, gave Rep. Skelton an ear-full about what he thought of the governor’s veto and questioned whether the governor had ever met a family without health insurance. It was pretty brutal, and it brought audible reactions from the House members. Although I was obviously glad that Rep. Skelton felt moved enough by this constituent’s message to speak on our behalf, I began to worry that the critical words were going to anger the governor’s buddies in the House and backfire. I worried even more when the next speaker to rise was Rep. Jim Merrill, the House Republican Majority Leader and a Sanford friend. Rep. Merrill said he didn’t think we needed to get into personal attacks (a paraphrase; I can’t remember his exact words), but that he thought we should nevertheless override the veto because the parties had worked so hard to reach a compromise on this important issue. With that, the Speaker called the vote. I was prepared for a voice vote (ayes v. nays), but then someone called for a roll call vote. A roll call can be a little dangerous – the governor can see which of his friends cast affirmative votes against his veto – so I got nervous again. As each legislator cast his or her vote, his or her name on the display board changed colors. “Green” meant a vote in favor of the override, and I can’t tell you what color signified a vote to uphold the veto, because there were none! 114 members voted, and, one by one, 114 names turned green on the big board.

And then the tears began to flow. But it wasn’t just Marcella and me crying this time. (Lisa, unfortunately, was in Texas today and didn’t get to witness in person.) My husband beside me started tearing up. Derrick and Sandrine Howle in the front row were crying. Everywhere I looked around in the balcony, a parent, a grandparent, an aunt, a cousin, a friend of a child with autism was weeping. Just then, all members of the House rose to their feet, turned toward us in the balcony, and erupted into applause. They gave us an emotional standing ovation for the tireless efforts of this grassroots gang, and they clearly felt proud of helping us override what some called a “cruel” veto.

Tears, hugs, and celebrations continued in the lobby of the State House, with senators and legislators coming out to greet and congratulate us. So many expressed the sentiment that they were honored to be part of this effort, which to them represented the political system at its purest – citizens petitioning their government for help and succeeding (though not without great difficulty and heartache).

I cannot begin to thank you enough for making this grassroots effort possible. We have worked for two years with no budget and no lobbyist – seemingly impossible conditions in today’s political world. But we had passion, determination, and an incredibly worthwhile cause. Each and every one of you who wrote an e-mail, sent a letter, made a phone call, or visited your legislator made a difference. Like I said above, I don’t even know who the grandfather is that called B.R. Skelton today, but that one call inspired Rep. Skelton to make an impassioned plea on our behalf. You never know which phone call or e-mail made the difference for each legislator, so every one of you is to be commended for every single act you took in support of Ryan’s Law.

Also, I would be remiss if I did not extend my super-special thanks to Lisa & Cliff Rollins, Marcella & Steve Ridley, Derrick & Sandrine Howle, and Dan Unumb, without whose encouragement and advocacy this would have never happened.

I’m not going to plead with you to write any more letters or make any more phone calls, but I’m sure your legislator would love to get a note of thanks if you feel so inspired. They deserve to be thanked for unanimously trumping the governor’s veto less than 24 hours after it was issued.

Although I obviously wish my son Ryan were not struggling with autism, I am today very grateful and honored to be part of this autism community.

With deepest gratitude,
Lorri J