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Posts Tagged ‘Combating Autism Reauthorization Act’

2011: A Year of Advocacy Accomplishments

December 1, 2011 2 comments

Tis the season to reflect back on the year’s achievements.

2011 was a banner year for Autism Speaks – and for the autism community in general.  Some of the most significant milestones were reached in the area of public policy.

This year, incredible strides forward were made when Congress passed the Combating Autism Reauthorization Act (CARA), authorizing an additional $693 million in federal funding for autism research, treatments and services over the next three years. In September, President Obama signed the bill with Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his family attending the Oval Office ceremony.

Needless to say, this is an incredible win for the autism community which will help advance the support for individuals with autism.

2011 also ends with autism insurance reform laws on the books in 29 of the 50 states, with the addition of California, New York and four other states this year.  This means that more health services will be covered for more people living with autism.

Our fight is far from over.  We won’t be satisfied until all 50 states have enacted autism insurance reform so families no longer have to worry about how to pay for the instrumental development and medical needs of their family members.

Join the fight and support Autism Speaks advocacy efforts to help us hit the ground running in 2012.

Donate now.

(l to r) Rep. Chris Smith (R-NJ); Scott Badesch, president, Autism Society of America; George Jesien, executive director, Association of University Centers on Disabilities; President Obama; Suzanne and Bob Wright, Autism Speaks Co-founders; Gena, Jasper and Billy Mann, Autism Speaks.

Keep Going, Keep Making a Difference

October 31, 2011 Leave a comment

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events.

In late September, The Combating Autism Reauthorization Act (CARA) was passed through Senate and was then signed into law by our President Barack Obama. One of the champions in Senate who helped us get there was New Jersey Senator Robert Menendez. Almost 2 weeks ago he came to an autistic school called Regional Day in my hometown of Jersey City, New Jersey to give a speech about the significance of the act. What I was amazed at though was when I received a call from his office to speak at the event! In front of countless media, family, and friends I spoke about my story with autism and what the impact an act like this will have not only for me but for countless others who are affected by autism.

The Combating Autism Reauthorization Act as some may recall will grant 693 million dollars to the autistic community for the next 3 years. Even though this is a great feat we still most continue to push forward as I stress in my speech as autism never takes a vacation so neither can we.

Below is a Youtube clip of me speaking at the event that I hope you all enjoy. Thank you!

President Obama Signs Landmark Combating Autism Act

September 30, 2011 76 comments

We are thrilled to announce that President Obama has signed legislation renewing the landmark Combating Autism Act for another three years, assuring continued federal support for critical autism research, services and treatment. Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his wife Gena with son Jasper, today joined the President at the White House for an official ceremony that sends a message of hope to the millions of families and individuals affected by autism.

The Combating Autism Reauthorization Act (CARA) — sponsored by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House of Representatives and Sen. Robert Menendez (D-NJ) and Sen. Mike Enzi (R-WY) in the Senate — would not have passed without the tireless efforts of advocates throughout the autism community. Across the nation, countless families and individuals united in a single voice and petitioned Washington to pass this vital legislation. Thanks to their efforts, the message was heard loud and clear: CARA passed unanimously in both the House and Senate despite an uncertain fiscal environment.

The new law continues the federal government’s commitment to autism research, services and treatment at current levels, authorizing $693 million over the next three years. The original act provided nearly $945 million over five years. Since its passage in 2006, significant advances have been made in determining potential causes for autism as well as promising new early intervention behavioral treatments. By signing CARA into law, President Obama has ensured the federal government’s commitment to autism so that crucial research can continue unimpeded for the next three years.

Autism Speaks salutes our lawmakers for listening, and responding, to the 1.5 million families across the nation who live with autism every day. To learn more about CARA, visit www.autismvotes.org/cara. To thank President Obama and your member of Congress and Senators for their support, please visit www.autismvotes.org/ThankPresidentObama.

Watch remarks by Autism Speaks Co-founders Suzanne and Bob Wright below.

CARA: It Took a Community

September 28, 2011 5 comments

This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.

I couldn’t be happier to share once again the news that we all had been waiting for…the Combating Autism Reauthorization Act is on its way to President Obama. Late Monday night, the U.S. Senate passed HR2005, the same bill that passed the House of Representatives last week.

For those who followed the chain of events during the past week, the band of four Senators who had placed a “hold” on the bill agreed to allow CARA to pass the Senate under the Unanimous Consent procedure. Their only condition was a request to the U.S. Government Accountability Office (GAO) to undertake an investigation on the federal funding of autism research, a request Autism Speaks has long supported to ensure our scarce federal research funds are spent wisely.

So now we have a law…well technically it becomes a law once President Obama signs it later this week!  $693 million in authorizations for autism research for the next three years.

Our success in the Senate this week and the House of Representatives last week was the result of a rare show of bipartisan leadership in today’s Congress. In the Senate, we thank our two original sponsors, Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY), along with the chairman of the Health, Education, Labor and Pensions Committee chairman, Sen. Tom Harkin (D-IA). Senate Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY) also earn our thanks by enabling our bill to move through a crowded agenda and on to the Senate floor for a final vote. In the House of Representatives, a team effort between Reps. Chris Smith (R-NJ), the prime sponsor of HR.2005, and Mike Doyle (D-PA) was assisted by House Majority Leader Eric Cantor (R-VA) who expedited consideration of the bill.

But this team effort extended well beyond the Beltway. The tens of thousands of Autism Speaks grassroots supporters and advocates across the United States who we called upon time and time again to make their voices heard played a central role in this success. A special thanks goes out to the entire Autism Speaks Field team for its incredible responsiveness and for rallying the troops from Maine to Florida, Texas to Minnesota and from Washington to the Tijuana border. Our grassroots efforts have never been better! And our thanks must also go to our partner organizations in this effort, the Autism Society of America, the Association of University Centers on Disabilities, the Consortium for Citizens with Disabilities, Easter Seals, the American Academy of Pediatrics, and the National Association of Councils on Developmental Disabilities.

The final enactment of CARA will be of enormous benefit to the autism research community that is making advancements on an almost daily basis. Because of CARA,  the research enterprise will be able to continue to grow, without interruption, to find the answers our community so desperately needs and deserves.

On behalf of the 3 million Americans who wake up every day with the challenges of autism, the professionals who work daily to care for them, the scientists who are dedicating their careers to finding the answers and all of those who are committing their lives to improve the futures for those living with autism, thank you!  Today is a better day because of what WE ACCOMPLISHED TOGETHER.

Family Services Office Hours – 09.21.11

September 22, 2011 1 comment

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled. 

3:03
Hi Everyone! Welcome to this week’s Family Services Office Hours! We are here to answer any questions you have about our resources and help connect you with others. So ask away!
3:04
Comment From sheila 

is there in sevices in lawrenceburg tn

3:05
Hi Sheila! Here is a link to our Tennessee Resource type! You can check for resources in your area!http://www.autismspeaks.org/community/fsdb/state.php?sid=50
3:05
Comment From Robbin 

I would like to know if there are any extracurricular activities in my area for my 16 year old son with Aspergers?

3:05
Hi Robbin! You can find lots of resources in our Resource Guide. All you need to do is click on your state, select categories like “Recreation and Community Activities” and type in your zip code.
3:06
I also suggest you order our Transition Tool Kit, it was designed specifically to help families of individuals with autism ages 14-22 on the transition to adulthood. It has lots of tips, including more about how ti get involved in the community.
3:06
Comment From Maggie 

Hi Autism Speaks. Thank you for giving us this opportunity to ask questions. I think my three-year-old son has autism. A friend of mine’s son was just diagnosed and I see a lot of his traits in my son. What should my first step be?

3:06
You can order a free copy on our website!
3:07
Hi Maggie! Thank you so much for joining us! There is a page on our website, ‘Learn the Signs.’http://www.autismspeaks.org/what-autism/learn-signsYou should also work closely with your pediatrician to be sure your son is reaching developmental milestones and to track his progress.
3:07
Also, check out our Video Glossaryhttp://www.autismspeaks.org/what-autism/learn-signs
3:09
We would also like to recommend a wonderful book, ‘ Autism Solutions’ by Dr. Ricki Robinson. Dr. Robinson will be here for a LIVE Chat on Monday, September 26th so check back for more!http://drrickirobinson.com/
3:10
Comment From Britt 

Hi Autism Speaks. My son was diagnosed with autism at 3. He is now 4. Lately a lot of people have been asking us what degree he is…and I have no idea. When he was diagnosed no oe mentioned a degree or anything like that that. Is this important to know? Does it make a difference? How would I go about finding this out? Thanks so much.

3:10
Hi Britt. Your pediatrician can help provide you with more information. However, regardless of the formal diagnosis, every child with autism is different so it is more important to focus on your child’s strengths and weaknesses and make decisions about his treatments based on what you see. You know him the best!
3:13
Comment From Connor

My wife and I are having difficulty potty training our daughter who has autism. Do you have any tips for us?

3:15
Hi Connor! Thank you so much for joining our chat. This is often difficult for families! Here are two books that we recommend!
3:15
Teach Toileting: A Revolutionary Approach for Children with Autism Spectrum Disorders and Other Special Needs
by Deborah Bialer http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523
3:15
Toilet Training for Individuals with Autism or Other Developmental Issues, 2nd Edition
by Maria Wheelerhttp://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:15
We haven’t read them ourselves but they have been submitted to our Resource Library by other families that have found them helpful, so I hope they are helpful to you too!
3:20
Comment From Britt

Thank you. Also, How would I go about finding activities for my son do? The state law here has changed for his IEP and it now says that he should have more social interaction…but we are having a hard time finding classes and activities for him that accept and understand kids with special needs. And lastly, do you know of or have any resource information for military families? My husband is AF and its likely that we will be moving again within the next two years. So I would like to get a resourceful connection if I can before then. Thanks you again.

3:21
Hi Britt, please visit our Resource Guide. You can search by state to find activities for your son.http://www.autismspeaks.org/community/fsdb/search.phpYou can also visit our Community Connections, ‘Have Some Fun Today! Recreation, Community Activities, Clubs and More!’http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:23
The Organization for Autism Research has sponsored a program called, ‘Operation Autism.’ It is a resource guide specifically for military families.http://www.operationautismonline.org/tag/military/
3:25
ACT Today! is a national non-profit organization is a mission to raise awareness and provide treatment services to families that cannot afford the treatments and services their children require.http://www.acttodayformilitaryfamilies.org/
3:25
Comment From Britt

Awesome! Thank you so much!

3:25
Comment From John

My daughter is having a hard time transitioning back to school. She is new in her mainstream class. How can I help her peers understand what autism is and why she has challenges. Thanks so much for taking the time here!

3:26
Hi John! We are sorry to hear that your daughter is having difficulties. We recently created a Community Connections, ‘Back to School: Let’s Get Ready for a Great Year’ that provides tips about how to ease this transition.http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:27
You can also look at our School Community Tool Kit in the section ‘Peers’ for more informationhttp://www.autismspeaks.org/docs/family_services_docs/sk/Peers.pdf
3:27
Comment From Sally

How do I talk with soemone in person.

3:28
Hi Sally! We have an Autism Response Team, and our trained coordinators would be happy to speak to you. You can email them directly at familyservices@autismspeaks.org or call them at 888-AUTISM2. They are available during regular business hours.
3:37
Comment From Liz

I have a 9 year old son with Autism/Aspergers. I have not been able to find a way to explain his autism to him. I need help finding a way to talk to him in a way he will understand. Is there an easy way?

3:38
Hi Liz, this is a struggle for many families. Please visit our Resource Library where we have a list of Asperger Syndrome websites http://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:38
We also have an ‘Asperger Syndrome and High Functioning Autism Tool Kit’ Tool Kit that can be downloaded for FREE here!http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:40
Comment From allison

i have a son 24 years old that was diagnosed as high functional with a photographic memory but i feel like he should be re-evaluated

3:41
Hi Allison. Re-evaluation is always a good idea if you feel like his diagnosis may have changed. You are the one who knows your child best, so it may be a good idea to trust your instincts and bring your son back to his doctor.
3:44
Comment From Colleen

What is this CARA thing I keep hearing about? Thanks for your help!

3:44
Comment From Louisa mciver

regarding the legislation that was re-approved yesterday….mandating coverage of autism therapies.

3:45
CARA, which stands for Combating Autism Reauthorization Act, was passed the the House yesterday(YIPEEEE), but we still have to wait for it to make it through Senate. For more information, you can visit this blog post by Judith Ursitt, the Director of State Government Affairs at Autism Speakshttp://blog.autismspeaks.org/2011/09/21/tell-congress-to-pass-the-combating-autism-reauthorization-act/
3:46
We have just a 9 days left to pass the Combating Autism Reauthorization Act (CARA) of 2011 before critical provisions expire on September 30th. On September 20th, the Combating Autism Reauthorization Act passed with a floor vote in the House of Representatives. Now, we need you to switch your focus again back ot the Senate. Contact your Senators to ask themto support this important piece of legislation!
3:46
Comment From Louisa mciver

The info I read says that state operated insurance has to cover autism therapies, etc. Does this also apply to group insurance through an employer?

3:46
You can click on your state to learn what is happening there!http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm
3:56
Thank you for joining us today! Our next live chat is Monday at 3PM. Dr. Ricki Robinson is going to discuss ASD and its impact on family members. She will have lots of great things to say so don’t forget to tune in!
3:57
As part of the live chat, we will be giving away ten of Dr. Robinson’s new book called Autism Solutions. So join us!
3:58
As always, if you have any other questions, please don’t hesitate to contact our Autism Response Team at familyservices@autismspeaks.org or 888-AUTISM2. Enjoy the rest of your day!

Tell Congress to Pass the Combating Autism Reauthorization Act

September 21, 2011 4 comments

Ursitti is the director of State Government Affairs at Autism Speaks and is the mother of two children, 8-year-old Jack and 11-year-old Amy. She lives just outside of Boston and has been involved in autism advocacy since Jack’s autism diagnosis 6 years ago. She writes a personal blog called Autismville.

Judith Ursitti and her son, Jack

“I’m not giving up on this kid, and you’re not either.”

Dr. B peered over the medical chart, looking me squarely in the eye. I, of course, was not ready to give up. Couldn’t ever imagine giving up.

But to hear her remind me that she wasn’t either? Well, when you’re the mom of a kid who’s been labeled non-verbal, non-responsive, extremely-challenged, severe—all words that pretty much equate to hopelessness—the commitment of someone, anyone other than you…it resonates.

My son Jack has been seeing Dr. B for four years now. Yes, he is incredibly challenged by autism but first and foremost, he’s a great kid. Dr. B realizes that and has done everything within her power to make sure that he reaches his full potential, that his medical needs are met, and that he feels good, even though it’s hard for him to tell us.

She runs one of the 17 Autism Treatment Network (ATN) sites where people like my Jack, who have been diagnosed with an autism spectrum disorder, go for highly coordinated medical care. It’s worth noting that ATNs are partially funded by the Health Resources and Services Administration (HRSA). Your help is needed in order to ensure that the 17 ATNs dotted across the country have the ability to keep supporting and believing in beautiful people like Jack.

Five years ago, the Combating Autism Act (CAA) was passed by Congress. Millions of dollars were authorized to fund autism research, diagnosis and treatment. The HRSA ATN funding I mentioned earlier is one shining example of how CAA funds have been invested.

Unfortunately, on September 30th, the provisions of the Combating Autism Act will sunset. Because of this, the Combating Autism Reauthorization Act (CARA) was filed earlier this year. CARA simply extends the work of the Combating Autism Act for three more years. As desperately as it is needed, advocates recognize the challenging times the country is facing, and are not asking for additional funding.

The good news is that CARA has bi-partisan support in both the U.S. Senate and House of Representatives. The bad news is that the clock is ticking. The September 30th deadline looms. The Congressional agenda is very full. We literally need an Act of Congress and we need it before the end of this month.

That said, slowly but surely, things are moving. Due in great part to a huge grassroots push last week, House Majority Leader Eric Cantor posted the bill for an expedited vote before the U.S. House of Representatives where it pased yesterday by voice vote.  Things are less certain in the Senate, where the CARA legislation passed unanimously out of the Senate HELP committee in early September, but has yet to be taken up on the floor.

It is not an exaggeration to say that every day until Septermber 30 will be critical. Congress is focused on many consuming issues and it is up to us to make sure that they don’t leave families and providers who walk in the word of autism a step behind.

In the spirit of Dr. B, I’m not giving up. I’m asking that you not give up either.

Join our final push for Combating Autism Reauthorization Act through United States Senate, by clicking here!

Power in Unspoken Words

August 18, 2011 37 comments

Sometimes words that aren’t actually spoken out loud are the most powerful of all. Lou is the married father of three. His eldest daughter has autism. You can read more at blog, Lou’s Land.

A message from Lou:

Sometimes anger can really inspire you. Sometimes it is the simple ideas that are the most effective. When the two come together, it can lead to something really special. That has been the experience I have had with my “Fixing” Autism video.

I don’t think anybody would ever describe me as a braggart, but this time I am not going to shy away from being proud of something I created. Probably because this time it is personal. Have you ever reached your limit? On August 13th, I had reached mine.

I had a simple plan. Share my story and back up my frustration with facts. The numbers had been driving me mad for months. While doing some research on autism statistics, I had come across a page on the Autism Speaks website entitled; “Facts about Autism” and the numbers were dizzying. The disparity in funding made me sick to my stomach. Most people of child bearing age know the basic statistic that 1 in 110 children in the US will be diagnosed with Autism Spectrum Disorder, what most people don’t know is the frustration that comes from the parents of autistic kids when they see the complete lack of equal funding for something that appears epidemic in nature, particularly to those involved.

I must have visited that page 10 times. Each time I looked at the numbers my frustration increased. As I stared at my computer screen, I felt like more people needed to understand these statistics. They were absolutely vital to the war that parents dealing with ASD are fighting every day. Those numbers are why these parents have to struggle. But while I found the numbers important and interesting, I really felt like they were dead on the page. Reading statistics is not exactly exciting. It isn’t “sexy” as the Hollywood types say. That is when the light bulb turned on.

I had to give the numbers meaning. I had to personalize them. I had to add a human element to what those statistics meant to the parents of an autistic child. To do that, I knew that I would have to make myself a little vulnerable. I had to tell our story and why I felt those numbers had to be shared. What I realized as I made my notes was that it really wasn’t MY story. It was OUR story. The autism community has a shared experience of embarrassment, shame, anger and helplessness. Often times, all of these chips stacked against us result in us being quiet and shutting down. We become discouraged and for fear of being denied yet another service we view as vital but the insurance companies see as “experimental”… we do nothing, paralyzed by fear.

Powered by a lack of sleep from staying up with Bianca most of the night, I opened up some notes I had emailed to myself and started to transfer those thoughts to index cards. I knew exactly what song I wanted to use because a few months earlier I broke down in the car when it came on the radio. It made me think about my daughter. As a man, I could certainly relate to the idea of desperately wanting to “fix” something. That feeling tends to be instinctual to us men folk when we see that something is wrong. We want to fix it. Sometimes we make it worse, other times we may just confuse the situation, but when we are really fortunate we can set things right.

That is what I hoped to do… make things right. Affect change. Change the dialogue. Make other parents that are in my situation feel like they can scream from the mountaintops about the injustice and the frustration that comes wrapped up in a red-tape bow every time you have to talk to the insurance company, or go over an IEP. I wanted to make it so that others knew that it was OK to be mad as hell that they have filled out yet ANOTHER form asking what your child’s limitations are, while seeming to care less about what they excel at. I wanted to affect a person with neuro-typical kids in such a way that when they see a child acting up in public, they glance over not with disdain but with compassion.

So I had a webcam, index cards, an MP3 and most importantly the raw, honest truth. After I edited the piece together I clicked play to review my work. I felt like I was watching it for the first time. As if I wasn’t even the one in the video… and I knew it was right. Sure there are some technical things I would like to change… but the message was dead on.

I debated just putting the video up on my Facebook page, but that was safe. I really wanted this message to be heard. I was proud, and I was still angry. I uploaded it to YouTube, told some friends about it, and shared it on the Autism Speaks Facebook page. The reaction was immediate and incredibly humbling. It gave me the motivation to promote it with a little more gusto. An old co-worker of mine believed in the message so much that she started to promote the video all over the Twitterverse. That gave me even more energy to feed off of, and before you knew it the video was being seen by important people in the autism community. Imagine my surprise when I took Bianca to therapy with the intention of telling the therapists about the video only to have them tell me that they saw and loved it before I could bring it up. I was stunned.

So I encourage my fellow parents out there in Autismland… don’t just talk to others about your experience… SCREAM it. It doesn’t have to be a video. All you need is to own the truth. It is OK. It isn’t whining if there is injustice. When insurance companies will pay for people’s allergy shots because their new girlfriend has a kitty, but not for my daughter’s speech therapy… and she CAN’T COMMUNICATE… it is OK to be mad. Let’s end the shame and the silence and start holding people accountable.

 

The Combating Autism Reauthorization Act (CARA) of 2011 would reauthorize the landmark Combating Autism Act of 2006, securing the federal response to the national and public health emergency posed by autism spectrum disorders.

For more information on autism legislation and advocacy, please visit Autism Votes.

Senate HELP Committee Reschedules Meeting for September 7

The U.S. Senate Health, Education, Labor and Pensions (HELP) Committee has announced that it has rescheduled a hearing on the Combating Autism Reauthorization Act (CARA) for September 7. The meeting had been scheduled for this Wednesday Aug. 3, a date that unfortunately landed in the midst of the debt ceiling debate which has consumed Congress for much of the summer.

The HELP committee meeting is an important first step in renewing the historic 2006 law which guides the federal government’s response to the staggering rise in autism. Autism Speaks thanks everyone in our advocacy community for their hard work to date and urges you to be ready to resume the fight soon as we work to get this bill that is so essential to our families through Congress.

The CARA bill is sponsored in the Senate by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) To date, 22 other Senators and 53 House members have signed on as cosponsors.

Visit our CARA Action Center to find if your Senators and Congressmember are sponsors.

Since the original Combating Autism Act was approved in 2006 with near-unanimous Congressional support and signed into law by then President George W. Bush, the prevalence of autism spectrum disorders (ASDs) has risen to 1 in 110 American children – including 1 in 70 boys. An estimated 1.5 million individuals in the U.S. are affected by autism, and government statistics suggest the prevalence rate is increasing 10-17 percent annually.

The CAA authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. It required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.

The 2006 law established autism as a national health priority and increased funding, leading to significant advances in our understanding of autism. But all of that progress could grind to a halt September 30 unless Congress sends President Obama a bill reauthorizing the Combating Autism Act. CARA would continue federal funding at current levels – that’s $693 million over the next three years dedicated exclusively for autism-related work by the National Institute of Health, the Centers for Disease Control and Prevention, and other federal agencies. The President already has promised to sign a reauthorization bill this year.

Autism Speaks Testifies at Congressional Hearing

June 1, 2011 8 comments

This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks.

When Peter Bell, our EVP of programs and services, first told me about the possibility of testifying at a hearing Congressman Chris Smith (R-NJ) was holding on a global perspective on autism, I did a double take. It was not surprising that Congressman Smith, a long time friend of the community who with Congressman Mike Doyle (D-PA) had just introduced the Combating Autism Reauthorization Act of 2011 in the House last week, is interested in autism. But the fact that he wanted to learn more about the international autism community, especially in Sub-Saharan Africa, had me wondering what could have led the congressman from Brick Township, N.J., to the Townships of South Africa.

It turned out that like many others in our community, Congressman Smith and his colleagues on the House Foreign Committee’s Subcommittee on Africa, Global Health, and Human Rights, understand that autism does not discriminate based on ethnicity or socioeconomic status, and that the only way to speed answers to all individuals and families struggling with this disorder around the world, including those in the U.S., is through international collaboration.

“The benefits of international collaborations and cooperation are multidirectional,” said Congressman Smith in his opening statement at the hearing yesterday afternoon.

In addition to Stuart Spielman and Kevin Roy from our crack government relations team, I was joined at the hearing by Dr. Tom McCool, CEO of Eden Autism Services in New Jersey, Ms. Brigitte Kobenan, founder of Autism Community of Africa, and via teleconference, Ms. Arlene Cassidy, CEO of Autism Northern Ireland. We spent a few hours with members of the subcommittee discussing barriers to progress, such as lack of awareness, capacity and expertise, especially in low and middle income countries.

We also touched on the unique scientific opportunities available and the lessons we can learn from them. For example, we explored the implications of the recently published, surprisingly high prevalence estimate from South Korea; an epidemiology study Autism Speaks funded in a region of South Africa endemic for AIDS to explore the potential risk of a compromised immune system on brain development (link to KZNU study); and the promise of eHealth and distance-learning technologies in the global dissemination of best practices.

Importantly, Congressman Smith credited a trip he took to Lagos, Nigeria, in 2007, where he learned firsthand from parent advocates the enormous daily challenges they face with little or no government support, as the impetus for the Global Autism Assistance Act that he first introduced in 2008 (HR 5446). He is planning to reintroduce the legislation later this week and wants to encourage the “Administrator for the United States Agency for International Development (USAID) to establish and administer a health and education grant program to support activities by nongovernmental organizations and other service providers focused on autism in developing countries…”

“Concerted actions are required to overcome the global challenges to effectively address autism and other developmental disabilities,” Congressman Smith concluded. “We need to continue to help increase awareness of autism at all levels and in all countries, to advocate for the inclusion of developmental disabilities in national and state health policies, to increase the availability of quality services across a continuum of care and across the lifespan, and to continue to support scientific research that will lead to more effective treatments, and one day, to effective strategies for prevention.”

For more information on the Combating Autism Reauthorization Act (CARA) of 2011 please visit Autism Votes.

To view the Congressional Hearing on the C-SPAN Video Library click here.

Don’t Let the Sun Go Down on Combating Autism Act

May 26, 2011 5 comments

The landmark Combating Autism Act (CAA), signed into law by President George W. Bush in 2006, gave all of us in the autism community a foundation on which to build. But key provisions in the law are scheduled to sunset September 30. Unless Congress acts quickly to renew the law, the funding we need to continue vital research will vanish. The progress we have made over the past five years will grind to a halt. There simply is no more important or immediate issue for us today at the national level.

Autism impacts not just the people with the disorder themselves, but their immediate families as well as taxpayers who will have to pay higher taxes to care for people with autism if treatments and therapies are not developed to help them live independent lives. Fortunately, bills have just been introduced in both houses of Congress – the Combating Autism Reauthorization Act of 2011 (CARA) – to continue the momentum we have built since 2006. These bills have the support of both political parties, a rarity in Washington these days, but need the support of the entire autism community. The original 2006 act passed Congress with near unanimous support – it is time again to make sure your voice is heard with your Senators and Congressmen. Sign up to receive alerts from Autism Votes.

Why was CAA so important? For the first time, the U.S. government recognized the specific impact autism spectrum disorder (ASD) has on a significantly large portion of the American population. Nearly $1 billion in federal investment was authorized for biomedical and treatment research for autism. The law also required the development of a comprehensive, strategic plan requiring all federal agencies that have anything to do with autism, whether in health, education, or social services, to coordinate their efforts and, for the first time, communicate with each other through the Interagency Autism Coordinating Committee (IACC). This is important because it is easy for each agency to work in isolation without ever realizing how their work or study could impact another agency’s efforts.

One billion dollars is an extraordinary amount of money. But the fact that one in 110 children, including one in every 70 boys, is now diagnosed with an ASD is also extraordinary, an alarming testament to the growing crisis of autism in the U.S. It is easy to understand why our community is coming back to Congress to reauthorize this legislation for vital research. The newly introduced CARA bills would continue federal funding at current levels for another three years. The need for even more funding is obvious; but the concerns within Congress over the size of the federal deficit must be respected if we are to move forward.

The CAA has given us the foundation on which to continue to build. Some of the bricks in that foundation include:

  • Development of standards of care for medical and behavioral health, clinician guidelines and training
  • New treatments for commonly associated medical conditions, such as sleep and gastrointestinal disorders
  • Improved methods for autism screening and recommendation for universal screenings at well baby check-ups
  • Development of effective early intervention methods for toddlers
  • Detailed surveillance by the federal Centers for Disease Control and Prevention (CDC) of the increasing prevalence of ASD
  • Identification of several autism susceptibility genes leading to drug discovery and earlier detection in infants at risk for ASD

And what do we lose if CAA is not renewed?

  • A requirement holding the federal government accountable for its efforts to improve the lives of persons with ASDs through research
  • Two intervention networks – physical and behavioral health – that support the development of clinical care practice guidelines, clinical training and research on effective treatments
  • Augmented support for the University Centers of Excellence in Developmental Disability (UCEDD) to promote training and dissemination of best practices in ASD screening, diagnosis and treatment
  • The mandate requiring that a strategic plan for autism be updated annually
  • A shutdown of the IACC – the special team that has come together to share any and every advance that has emerged to help combat autism

One day, we will put a roof on autism – find the causes, effective treatments and, ultimately, answers for all those seeking a cure.

In the coming months we will need your help to contact your United States Members of Congress, both in the House and the Senate. Please sign up to receive alerts from Autism Votes. We make it easy for everyone to get involved. To speak your mind. To tell legislators what you want. To make Congress listen.

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