AGE OF AUTISM

UPDATE House & Senate RSVP List for Maloney Smith Autism Research Briefing

Below is the updated list of 70 attendees for the Maloney/Smith autism briefing. We've included which members are part of the Coalition for Autism Research & Education.

Friday, July 17 at 9:30 AM 210 Cannon House Office Building, Washington, DC. Thanks for your calls, they worked!

Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith (R-NJ) are hosting a special briefing for Members of Congress and their Staff to discuss issues related to autism research and treatment. We hope that you will attend the briefing to learn about the changing dynamics of the autism debate, as you will find many in government and science believe this debate is far from settled.
(Details below the jump.)

*Member of the Coalition for Autism Research and Education (CARE) – The Congressional Autism Caucus = 19
 
*^Member of the Coalition for Autism Research and Education (CARE) – The Congressional Autism Caucus - who also sent staff to Sept. briefing = 12
 
**Co-Chairs – Coalition for Autism Research and Education (CARE) – The Congressional Autism Caucus

Are your representatives on the list? If not, please call them. White House Switchboard: 202-456-1414, Senate Directory Here, Congress Directory by State Here.  

SENATE
Sen. Tom Coburn (R-OK) – Will attend in person (?)
Sen. Orrin Hatch (R-UT) – Will send staff member

Why Are Only 39 of 158 C.A.R.E Members Attending the Maloney Smith Autism Briefing?

If you were a member of the Congressional Coalition for Autism Research and Education, wouldn't you make learning about the most recent developments in autism research, policy and treatment a priority? See briefing details HERE.

Please contact C.A.R.E. members from your state and ask them to attend personally or at least send a senior legislative staffer. White House Switchboard: 202-456-1414, Senate Directory Here, Congress Directory by State Here. Friday, July 17 at 9:30 AM 210 Cannon House Office Building, Washington, DC.

C.A.R.E. Member Attended '08 or RSVP '09 

Brady, Robert (PA) 08 
Castle, Michael (DE) 08/09 
Doggett, Lloyd (TX) 08 
Green, Gene (TX) 08 
Kline, John (MN) 08/09 

Unacceptable! Autism Excluded from H.R. 3200 Healthcare Bill! Call Speaker Pelosi Now.

By Shelley Hendrix Reynolds and Nan Cale

Whatever your thoughts are with regard to the national health reform discussion, whatever your party politics are, I want you to think about this.  Children with autism deserve appropriate health care coverage for their medical condition.  Some children in some places have access to that.  Most children with autism in most places do not. 

The health reform ship has sailed and autism insurance reform is not on it.

H.R. 3200 is currently in mark up and our hope of achieving autism insurance reform as part of the larger health reform initiative will require an amendment.  We can get that if we can be loud and generate thousands of phone calls into Speaker Pelosi's office over the next couple of hours.
 Here is how you can help:

1. CALL Speaker Nancy Pelosi's office at 202-225-0100 and tell her office that health insurance reform that does not stop autism insurance discrimination is unacceptable.

Fair Hearing Victory in California while Managed Care Organizations try and Deny Therapy (as usual)

By K. Paul Stoller, MD, FACHM

The day after I testified in Sacramento at a “Fair Hearing,” because one of the Regional Centers was trying to deny services to a 9 year old boy with autism, a consumer watchdog group has filed a lawsuit against the California Department of Managed Health Care (7/1/09). The group alleges state regulators wrongfully allowed insurance companies to deny certain treatments for children with autism.

Now, in the case I testified, the Regional Center tried to convince the Hearing Officer that the boy they were denying services to had Tourette’s Syndrome because he had an occasional tic – never mind a renowned neuropyschologist said he had autism and that he has no social awareness or ability to interact with peers (symptoms that have nothing to do with Tourette’s Syndrome).

Tourette’s Syndrome does not qualify children for assistance from the Regional Centers.

Drop the Donuts, We Ordered Size Medium Ts!

We just re-ordered the Age of Autism T-shirts and added size Medium and XXL. So you can either drop the donuts or pick up a couple of dozen depending which size you want!  If you're waiting for a T now, we should have our order in within 2 weeks.

Taking a page from public television, we'll happily send you a t-shirt as our thank you for making a donation to A of A via our PayPal donate button.  You choose the donation amount. OK? If you've made a donation and have not received a T-shirt, please email me KimStagliano@gmail.com with your mailing address and size, M - 2XL.

And we're giving one shirt away each week to our "commenter of the week" - make sure you use your proper email address on your comment so I can contact you. Click past the jump to see the back of the t-shirt.

Age of Autism Comment of the Week

Congrats to DIANE who commented on
THIS post on Gov. Jay Nixon of Missouri:

I love his passion. I love that he tells it like it is about the insurance companies' position. (I just KNOW there's a special place in hell for the insurance executives - acutally I could name a few). But i still wanna hear someone in government talk about medical treatments for our kids' medical issues. From my personal experience, glutathione ivs are far more effective than a "therapist" with 3 hours of ABA training feeding my kid m & m's when she touched her nose upon command.

Diane, email me at KimStagliano@gmail.com with your address and if you want M, L or XL.

Didn't win but still want a T-shirt? Taking a page from public television, we'll happily send you one as our thank you for making a donation to A of A via our PayPal donate button.  You choose the donation amount. OK? Please tell us if you want an adult M, L, XL or 2XL and include your address in the comments box at PayPal. 

The Insurance Industry Doesn't Want It!" Gov. Jay Nixon on Insurance for Autism

Watch this six minute video on Governor Jay Nixon of Missouri present angrily and eloquently on the failure of the autism insurance bill passage in his state. Paraphrasing, "We have coverage for Alzheimers..."  "The industry has survived other mandates. Mammograms, prostate screening."  If the video doesn't download on AoA for you, click HERE to go to You Tube. 

Thank you, Governor. And thanks for keeping the insurance industry and weak politician's feet to the fire.  Thank him yourself HERE.

Thoughtful House Responds: Sunday Times Defies Press Complaints Decision on MMR Autism Stories

Managing Editor's Note: Scroll down to read email correspondence as well.

Sunday Times Defies Press Complaints Commission

Paper Notifies Media Oversight Agency that it Will Not Remove from its Website False Stories about MMR and Dr. Andrew Wakefield  
 
(Austin, Texas) – The Sunday Times of London, a Rupert Murdoch News Corporation paper, has defied direction from the UK’s Press Complaints Commission (PCC) to remove from its web site controversial stories it has failed to substantiate, which allege Dr. Andrew Wakefield “fixed” data relating to the MMR vaccine.  The reports by correspondent Brian Deer are the subject of an extensive complaint filed with the PCC by Wakefield.

The PCC last week issued an unpublished directive that the stories be removed (see below).  They were taken down immediately, unannounced, but the Sunday Times has now defied the PCC by putting the stories back online after complaining Dr. Wakefield publicly announced the PCC’s directive. 

Autism Speaks: Call Speaker Pelosi to End Autism Insurance Discrimination

Senator Reid's mailbox is full and all lines are busy, I'm on hold right now (11:36am, Kim)  Keep Calling!

Managing Editor's Note: Click HERE to see the new TV ad campaign from Autism Speaks calling for an end to insurance discrimination for autism. Below is an action alert from AS asking you to please call and email Speaker Pelosi and Majority Leader Reid.  Sample script included. Please act now.  KS

Today, Autism Speaks has launched its first national television advocacy campaign. 
 
Our ad, entitled “Neighbors,” depicts the consequences of insurance company discrimination against individuals with autism and calls on the American public to urge Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to end autism insurance discrimination in the upcoming health reform legislation.

We need YOUR help to make this a reality!  “Neighbors” will be broadcast on CNN, MSNBC and CNBC, reaching millions of informed and politically active Americans.  Watch our TV Ad. Then, ensure your voice is heard by calling Majority Leader Reid and Speaker Pelosi today! HERE IS HOW YOU CAN HELP!

1. CALL SPEAKER OF THE HOUSE NANCY PELOSI & SENATE MAJORITY LEADER HARRY REID AT THE PHONE NUMBERS BELOW!

Speaker Pelosi: (202) 225-0100

Majority Leader Reid: (202) 224-3542

Restraint and Seclusion of Special Ed Students in Schools: End the Abuse

Tuesday, July 7 at 12:00 noon ET

Autism One: A Conversation of Hope
Host: Teri Arranga
On the VoiceAmerica Health and Wellness Channel Click HERE.

Restraint and Seclusion of Special Ed Students in Schools: End the Abuse

From a National Autism Association release:  "In May of 2009, a government report listed 19 state governments that have yet to regulate the practices of restraint and seclusion in schools.  The report also cited multiple cases of improper restraint and seclusion resulting in death, injury, and emotional trauma of children with varying disabilities."  Lori McIlwain, NAA chairperson of the board, Phyllis Musumeci, founder of Families Against Restraint and Seclusion, and Sharon Boyd, founder of Parents in Action, join Teri for this discussion about the scope of the situation and what you can do.  Please see also the NAA site HERE.