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.
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.
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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.
This guest post is by Shannon Knall, the Autism Speaks Connecticut Chapter Advocacy Chair and mother of three boys – her oldest has autism. She worked with state legislators to pass the autism insurance reform bill in 2009.
I first met Senator Chris Dodd at a press conference in Washington DC in 2008. I have lived in Connecticut for almost my entire life. Senator Dodd is a political icon here and as a result I was certainly intimidated by the mere thought of meeting him. How I wound up standing right next to him with an autism community delegation from Connecticut I have no idea, yet there I was.
Flashbulbs lit up as he entered the room. Without missing a beat, he strode to the podium and greeted Autism Speaks Co-Founders Bob and Suzanne Wright. He then turned to me. With an outstretched hand and a warm smile, he introduced himself. We had a brief exchange as I explained to him that my son had autism and thanked him for his ongoing service to the disability community.
He looked at me and said, “Moms like you make me want to do everything I can to help. Never stop being the voice for your son.”
Neither has Senator Dodd.
Without a doubt, his retirement will be a palpable loss for our community.
Before his last term comes to an end in January, he took a final stand for the autism community through the introduction of the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044). This Act furthers the Senator’s work which he began through the Combating Autism Act (CAA), signed in to law in 2006. The , CAA, among other provisions, created a desperately needed focus on research in to the cause, treatment and cure for autism. That original law will sunset in September of 2011 unless it is reauthorized by Congress to continue providing funding necessary for research and services and if that happens the momentum that has built up since December 2006 will sunset with it.
Prior to Senator Dodd’s introduction of the CAA, autism was an intermittent blip on the federal legislative radar. Our community had been in desperate need of a comprehensive plan, one that is broad in scope but specific in delivery to address the spectrum of needs of our loved ones with autism. The historic unanimous passage of the CAA changed all of that. With passage of CARA comes an opportunity for autism to remain a continued focus of political attention in addition to matching more aggressive action in response to the autism epidemic.
As your constituent and as an advocate for my son, thank you Senator Dodd for your unwavering compassion for our families in our community not only here in Connecticut but nationwide, and the courage you had, once again, to be our champion.
For more information on the Combating Autism Reauthorization Act of 2010, please visit www.AutismVotes.org/CARA.
Combating Autism Reauthorization Act 2010 Introduced! Senators Dodd and Menendez Are Again Champions for Nation’s Autism Community
We are pleased to announce that Senator Chris Dodd (CT), along with Senator Robert Menendez (NJ) introduced the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044) late this past Friday. This new legislation would reauthorize the landmark Combating Autism Act of 2006 (CAA), significantly increasing both the depth and breadth of the federal response to the national and public health emergency posed by autism spectrum disorders (ASD).
As a result of the 2006 CAA, our community has made tremendous strides in federally-funded and directed research. It was the detailed surveillance by the Centers for Disease Control under the CAA that identified the increasing prevalence of autism: now a staggering 1 in every 110 American children – including 1 in 70 boys – is diagnosed with an ASD, making it the nation’s fastest-growing, serious developmental disorder.
Additional significant advances under the CAA have been realized, including:
- Improved ASD screening methods and universal screening recommendations;
- Development of effective early intervention methods for toddlers with autism;
- Creation of clinical networks aimed at improving physical and behavioral health;
- Identification of several autism susceptibility genes, leading to discoveries of new methods for diagnosis and treatments; and
- Development of best practice standards of care for co-morbid medical conditions including sleep and gastrointestinal disorders.
The Combating Autism Act of 2006 finally put us in the right direction toward formulating and implementing an effective research strategy to investigate the mysteries of autism. It is imperative that we continue to refine and intensify research into the potential causes of autism and determine ways we can improve the lives of people living with autism today, as well as their families.
Please support the CARA by taking action today! Your support on this issue is crucial in order to continue to address the public health crisis of autism and to help individuals with autism and their families across the country.
Here’s How You Can Help:
1) CALL AND THANK SENATORS DODD AND MENENDEZ! Call Senators Chris Dodd (CT) and Robert Menendez (NJ) and thank them for their leadership in introducing the Combating Autism Reauthorization Act.
Senator Dodd – (202) 224-2823
Senator Menendez – (202) 224-4744
2) CLICK HERE TO SEND AN EMAIL TO YOUR U.S. SENATORS AND URGE THEIR SUPPOR FOR CARA! Make sure to personalize the email and explain briefly why your Senators’ support for this bill would mean so much to your family.
3) SIGN UP TO STAY INFORMED! Check out www.AutismVotes.org/CARA for updated news and information on this bill and sign up to receive our email action alerts.
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