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Countdown to CARA: On to the Senate!

September 7, 2011 Leave a comment

September 7 was an important day for the nation’s autism community as Congress began the effort to renew the landmark 2006 Combating Autism Act. By unanimous voice vote, the Senate Health, Education, Labor and Pensions (HELP) Committee moved S.1094, a bill which would renew the act for another three years, out of committee and on to the full Senate for a floor vote. While an important step, the HELP vote was just the first of several that Congress will need to complete by September 30 when the law expires.

To keep up the momentum, it is important that advocates urge those U.S. Senators who have yet to cosponsor S.1094, the Combating Autism Reauthorization Act (CARA), to do so immediately. Nearly a third of the Senate has signed on to the bill, including five new cosponsors this week, but we need more. Visit our CARA Action Center to learn how.

Getting the bill voted out of the HELP committee required that a quorum of 12 Senators were in attendance. An intensive grassroots efforts by Autism Speaks through the Labor Day weekend helped ensure that 14 members attended and all voted to approve the bill for consideration by the full Senate. When that vote will occur is uncertain.

In the U.S. House of Representatives, the CARA bill (HR.2005) similarly must first move out of the Energy & Commerce Committee before it can go to a full vote on the House floor. But before the committee acts, it must receive confirmation from Rep. Eric Cantor (R-VA), as the House Majority Leader, that he will allow the bill to go to a floor vote. Autism Speaks has launched a radio ad campaign in Rep. Cantor’s home district (Richmond-Harrisonburg) encouraging him to support CARA. Leader Cantor was a co-sponsor of the 2006 CAA, serves on the Congressional Autism Caucus and has attended Walk Now for Autism Speaks events in the past.

The original 2006 act authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. CARA would continue funding at current levels, authorizing $693 million over the next three years, without adding to the federal debt. The 2006 law was critical by establishing autism as a national health priority. Federal funding was increased by virtue of the 2006 law, leading to significant advances in the understanding of autism. The CAA 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, critical studies are underway and promising new interventions have been developed for children with autism, helping them to lead more independent lives, thereby reducing the need for publicly funded special education and social services.

Once a final bill is voted out of Congress, it goes to President Obama who has promised to sign a reauthorization bill this year. ALL of these steps must be completed by September 30 when the original act expires. To track the progress of the CARA legislation, visit the CARA home page at Autism Votes.

Countdown to CARA: Step One on Sept. 7

August 31, 2011 1 comment

With just a month to go, time is running short for Congress to renew the landmark Combating Autism Act of 2006. A critical first step arrives Wednesday September 7 when the U.S. Senate’s Health, Education, Labor and Pensions (HELP) Committee takes up S.1094, the Combating Autism Reauthorization Act of 2011(CARA.)

It is essential that a sufficient number of committee members attend the September 7 meeting and then vote to send the CARA bill on to the full Senate for a floor vote. Visit our CARA Champions page here to:
1) find out if your Senator is a member of the HELP Committee
2) make sure they have RSVP’d to attend this critical hearing and
3) find out how to encourage them to RSVP if they have not.

Meanwhile, the U.S. House of Representatives must also vote its version of the CARA bill (HR.2005) out of the Energy & Commerce Committee and on to a floor vote. Once these steps are taken, the House and the Senate must agree on a final version of the CARA bill before it can be sent to President Obama for his signature. This is a lot of work! And it all has to get done by September 30!

Why is this so important? The enactment of the Combating Autism Act (CAA) in 2006 was an historic moment for our community as it has guided the federal government’s response to the staggering rise in autism across the United States. Because of the CAA, Congress was able to invest nearly $1 billion in federal resources through 2011 on biomedical and treatment research on autism. The law 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 CARA bill is sponsored in the Senate (S.1094) by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives (HR.2005) by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) CARA would continue the work started under the CAA for another three years and authorize Congress to dedicate another $693 million exclusively to autism research and treatment. To date, 23 other Senators and 61 House members have signed on as cosponsors, and President Obama has promised to sign a reauthorization bill this year.

Visit our CARA Action Center to find if your Senators and Representative are cosponsors. If they are not cosponsors, find out how you can get them to sign on.

Since the original Combating Autism Act was approved in 2006 with near-unanimous support in Congress 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. America clearly must step up its response to autism. The responsibility lies with Congress and the answer is passing CARA.

Peter Bell Featured on PBS’s ‘Need To Know’

August 2, 2011 19 comments

In a single generation, autism has become one of the most common developmental disabilities, affecting an estimated 1.5 million Americans. With so many children diagnosed in the 1990s, over the next decade, hundreds of thousands of them will reach adulthood. How do we handle the upcoming needs of the adult autism community?

On September 7,  Congress will begin considering the renewal of the Combating Autism Act of 2006. Signed into law by President George W. Bush, it authorized nearly $1 billion for combating autism spectrum disorders through public awareness and enhanced federal support for research and treatment.

And there’s a lot that we can do from a private sector standpoint as well. To talk about the steps autism advocates recommend, Alison Stewart spoke with Peter Bell, executive vice-president of Autism Speaks, and the father of a teenage son with autism.

For more information, please visit Need To Know on PBS.

Tune in to “Need to Know” on PBS

July 29, 2011 4 comments

Tune in to PBS’s “Need to Know” for a segment on the challenges facing adults with autism and their families, as well as the desperate need for services that will help them live productive and fulfilling lives. The segment will feature an interview with Autism Speaks Executive Vice President for Programs and Services Peter Bell, who discusses the ongoing needs of adults with autism and the call for Congress to renew the vital Combating Autism Act (CAA). Due for reauthorization on September 30, the 2006 CAA represents the federal government’s commitment to support autism research, services and treatment. To learn more, visit www.autismvotes.org.

“Need to Know” will air on the following major PBS stations this weekend. This list is not comprehensive, so please check your local PBS schedule for a date and time near you.

WGBH-TV Boston: Friday, July 29 – 10:00 p.m. EDT

WTTW-TV Chicago: Sunday, July 31 – 9:00 a.m. CDT

KERA-TV Dallas-Fort Worth: Saturday, July 30 – 8:00 p.m. CDT

WNET-TV New York: Friday, July 29 – 8:30 p.m. EDT

WHYY-TV Philadelphia: Friday, July 29 – 9:00 p.m. EDT

KQED-TV San Francisco: Friday, July 29 – 10:00 p.m. PDT

WETA-TV Washington, DC: Friday, July 29 – 10:30 p.m. EDT


URGE YOUR U.S. SENATOR TO ATTEND September 7 Committee Meeting on Autism

July 28, 2011 4 comments

In 2006, The Combating Autism Act authorizing nearly $1 Billion was passed into law. Funding allocated and other provisions within that law will come to an end unless the bill is reauthorized before September 30th. Our community has $693 Million of dedicated autism research funding over the next three years at stake. We cannot lose the momentum we have gained since 2006.

If you are represented by one of the 22 U.S. Senators who serves on the HELP committee (see list of Senators here,) we need your help to make sure they attend Wednesday’s meeting.

Again, the committee must act on the bill in order to get it before the full Senate, important steps to getting it cleared by the House and sent to the President’s desk for his signature into law by September 30. Until the committee approves the bill, the full Senate will be unable to act.

Public welcome! Urge your senator to attend by clicking YES on this invite! Please know that if you live in one of the following states: AK, AZ, CO, CT, GA, IA, IL, KS, MD, MN, NC, NM, OR, PA, RI, TN, UT, VT, WA, OR WY – the rest of the autism community across the United States is counting on you.  One, or in the case of North Carolina – both, of your Senators is on the Health, Education, Labor and Pensions  (HELP) Committee.

YOU CAN TAKE ACTION HERE TO BE SURE THEY WILL ATTEND AND SUPPORT THE BILL!

RSVP to our Facebook event HERE

IACC releases 2009 Portfolio of grants

June 17, 2011 1 comment

The Interagency Autism Coordinating Committee (IACC) recently released their annual report on the portfolio of autism research funding for 2009. The report reveals that over $314 million dollars was spent on autism research from both federal and private sources. This report comes at a crucial time when the Combating Autism Act of 2006 (CAA) is under consideration for renewal. The CAA instigated the formation of the IACC which helps guide the appropriate use of federal funds for autism research.

So what was funded in 2009? The IACC breaks down funding into seven categories that stem from the key questions in the IACC’s strategic plan. The questions are listed in the figure below. In 2009, almost one-third of the funding (32% of total) went toward identifying risk factors for autism spectrum disorders (ASD).This category also received the greatest funding in 2008. The second and third most funded categories were investigations of the underlying biology of ASD (20%) and the development of treatments or interventions (20%). The categories receiving the least funding were services research (3%) and studies on autism during adulthood (<1%). The IACC noted these categories as special targeted areas for increasing funded projects in future years.

2009 included significant funding from the American Recovery and Reinvestment Act (ARRA) that Congress authorized earlier in the year. The National Institutes of Health used Recovery Act money to fund autism research with $64 million dollars that supported 141 new projects, which accounted for 33% of NIH’s autism research in 2009. The ARRA grants were targeted to address the IACC’s strategic plan questions and an analysis of those grants separately looks similar to the overall portfolio of grants. The greatest percentage of funding was allocated for studies of risk and underlying biology and least for services studies and understanding adult outcomes. The ARRA infusion of federal funds significantly increased the dollar amount of federal funding for autism research over 2008.

Overall, funding for autism projects increased by 21% from 2008 to 2009, much of this due to the ARRA funding.

The analysis also included a breakdown of funding by federal and private organizations. By far NIH supported the greatest number of projects (516) and granted the most money ($197 million) overall. The second and third biggest supporters of autism research were private organizations. The Simons Foundation granted $51 million over 98 research projects in 2009. Autism Speaks supported 220 projects with $23 million dollars raised from generous donations of families and loved ones who want to see better lives for all who struggle with ASD.

These numbers show the impact that foundations such as Autism Speaks can have on the direction of autism research as they typically support ideas deemed too “risky” for NIH funding. Indeed, a recent analysis conducted on Autism Speaks’ grants showed that for each dollar invested in research, investigators leveraged $10 more in additional funding. Researchers were able to use our early investment to further their studies and advance our collective understanding of autism.

Autism Speaks’ Chief Science Officer, Geri Dawson, Ph.D., says “Although we are pleased that funding increased for ASD research, we are still in great need of increased funding so we can make faster progress. Notably, the current IACC report shows that more funding needs to be directed toward research on adults and services. Basic scientific discoveries need to be translated into real world solutions that impact the daily lives of people struggling with autism.”

The timing of this report is critical. As previously mentioned, the CAA is now up for renewal. Without this support we would not have the IACC , which brings together stakeholders from the federal government, private research organizations, and community leaders to consider the needs of the community as a whole so we can best invest research dollars to solve pressing questions that actually impact the lives of real people.

Last month, new reauthorization bills were introduced with strong bi-partisan backing in the Senate by Senators Robert Menendez (NJ-D) and Mike Enzi (WY-R), and in the House by Autism Caucus Co-chairs Rep. Chris Smith (NJ-R) and Rep. Mike Doyle (PA-D). President Obama has pledged to sign a CAA reauthorization into law this year. The Combating Autism Reauthorization Act of 2011 (CARA) would extend the CAA – which includes funding for critical research, services and treatment, and contains measures to ensure cost-efficient planning and coordination of these efforts – for three years at current funding levels.

As Autism Speaks co-Founder Bob Wright stated last month upon the introduction of CARA, “Bi-partisan support for any legislation today is rare, and reflects our elected leaders’ understanding of the severity of the challenges we face. It is imperative that CAA is reauthorized, so that the vital work in research, treatment and services can continue.”

The numbers in this report are just one way to quantify the investments that are being made in our understanding of autism spectrum disorders, from risk factors to the effective delivery of services. We will continue to keep watch and advocate for more research that is aimed at improving lives today and transforming lives tomorrow.

The entire report is available for download here.

CAA Success Stories: A ‘Godsend’ for Families in Arkansas

June 15, 2011 4 comments

Dianna Varady is currently the Statewide Chapter Advocacy Chair for Autism Speaks in Arkansas, advocating for autism research and services at the federal level, as well as leading the grassroots effort that resulted in Arkansas becoming the 24th state to enact autism insurance reform in 2011.  Dianna has a son with autism.

What a difference six years makes.  In July of 2005, my husband and I were in a meeting with our son’s treatment team when we were told very bluntly, “We think you’re dealing with an autism spectrum disorder here.”  Difficult to hear, but exactly what I needed to pull my head out of the sand and get to work.  I wanted answers….how did this happen and what do we do now???

It took us about three days to discover that we had a world-renowned autism researcher right here in Arkansas.  Dr. Jill James at the Arkansas Children’s Hospital Research Institute was studying folate metabolism in children with Down syndrome when she accidently stumbled upon a significantly abnormal metabolic profile in one of her control subjects – a sibling of one of her study subjects who was diagnosed with autism.  Pretty soon she had identified several more children with autism who had the same bizarre profile.

We contacted Dr. James right around the time her study was being published.  At the time, she was presenting her findings to physicians and researchers around the United States and to her colleagues here at Arkansas Children’s Hospital.  Pretty soon we had dozens of physicians and researchers interested in autism.  Here in Arkansas, doctors from many of the specialty clinics were interested in conducting their own research.  We had an abundance of talented and passionate professionals just waiting for an opportunity to put all of their new-found energy and enthusiasm around autism to good use.  Then, in 2006, along came the Combating Autism Act (CAA.)

Thanks to the CAA, Arkansas now has an Autism Treatment Network (ATN) Clinic, where our developmental pediatric teams are identifying children with autism using state-of-the-art evaluation tools and contributing to a nationwide data registry.  The same ATN team also recently held its second annual “Team Up” autism conference for parents, educators, and clinicians to learn from some of the most respected professionals in the field of autism.  We have a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the University of Arkansas for Medical Sciences (UAMS), also funded through the CAA, that provides graduate students in a number of different disciplines the opportunity to work together on a multidisciplinary team.  And, probably most exciting of all, the CAA has funded research here in Arkansas.  An autism prevalence study is underway, and we have studies funded by CAA that are looking at diet, nutrition, physical health and quality of life.

One of the fringe benefits of the programs and studies provided through CAA funding is the way all this activity around autism has brought together a team of specialists at Children’s Hospital to develop an autism clinic with a geneticist, a gastroenterologist, and a neurologist.  These three doctors collaborate with one another to provide top-notch care for their patients, and to improve the overall experience for families in their clinic.  For our family this has been a godsend.  Many of the answers we were seeking in 2005 have been found thanks to these dedicated and compassionate doctors.

Naturally, being an Arkansas native, I’m proud as a peacock of all this activity right here in my back yard.  But the CAA is scheduled to expire September 30, jeopardizing continued federal funding for many of these activites. That’s why it’s CRUCIAL for Congress to move quickly and approve the Combating Autism Reauthorization Act (CARA.)   If not, all of this research and these advancements in the field of autism could disappear.  And so could our hope for a cure.

Dianna Varady (left), with Arkansas Rep. Uvalde Lindsey and Autism Speaks Senior Policy Advisor & Counsel Lorri Unumb following passage of Arkansas insurance reform bill

This legislation must be passed by Congress and signed by President Obama by September 30th, 2011. If you would like to get involved to make sure that happens, please visit www.autismvotes.org/action-cara. Autism Votes makes it easy to participate. Autism Speaks – It’s time for Congress to listen.

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.

I AM JUST ONE PERSON, WHAT CAN I REALLY DO?

September 21, 2010 4 comments

This post is by Sharon Boyd, the  Advocacy Relations Coordinator for Autism Speaks.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has” – Margaret Mead

I read Margaret Mead’s words for the first time shortly after my son, Austin, was diagnosed with autism.  At the time I didn’t realize just how much her words would become a part of my future.  

Like many children with autism, Austin was denied insurance coverage for his autism treatments. No matter how hard I tried, without private insurance coverage, I could not get my son the treatments his physicians prescribed.  I finally quit my job as an RN to lower my income, so that we could qualify for Medicaid and provide him with access to speech therapy.  It was obvious to anyone that big policy changes were needed if our kids with autism were going to get the care they needed.

The more I networked with other families throughout my state, the more I realized there must be strength in numbers.  We needed to unite our voices.  We needed to become that “small group of thoughtful, committed citizens” that Margaret Mead spoke about in order to get our legislators to listen and “change the world” for our children with autism. 

When the autism community uses one voice, our legislators listen. They hear us loud and clear, with one booming voice and they too become committed to the policy changes our families so desperately need.  This is what happened in my state of Florida when we finally passed our autism insurance reform bill in 2008.  It is what has happened in 22 other states across the country that has passed meaningful autism insurance reform laws.  And it is what happened when the autism community came together to pass the Combating Autism Act in 2006.  Strength in numbers. 

Autism Speaks holds walks across the country that raise funds for autism research. But these walks serve another purpose as well.  Every walk has an advocacy booth that is part of the Autism Votes initiative.  This fall the volunteers at the Autism Votes booth at every walk will be there to provide you with information on the important pieces of pending autism-related federal legislation, such as the ABLE Act, which seeks to allow families of a child with a disability to save money, tax-free, for future needs as an adult.  Most importantly, at the Autism Votes booths this Fall, you will have the chance to sign a petition in support of the ABLE Act, and/or other autism-related federal and state legislation.  Your signature on this petition will join with the hundreds of others collected at your walk and, acting as a united message from a united voice, will go directly to the legislators who can bring about the changes our families need.    

So, be sure to stop by the Autism Votes booth when you attend an Autism Speaks walk this fall.  You can’t miss it…it’s the only booth with red, white and blue streamers, balloons and other patriotic decorations!  Or find one of the Autism Votes volunteers with a clipboard that will likely be walking through the crowd asking for signatures.

Signing a petition at the Autism Votes booth will take you just one minute.  Just one minute of your time to become part of a united voice in the autism community.  A simple minute to become that committed citizen and change the world for your child or a child you know with autism.

Supporting Americans with Disabilities

We applaud the Obama White House for its continuing support of individuals with disabilities. Through the stimulus act, the administration committed additional funds to autism research, on top of the existing National Institutes of Health funding and Combating Autism Act funding.

Kareem Dale, Special Assistant to the President for Disability Policy, blogged yesterday about another move the administration made to support those with disabilities. Read more here in his White House blog. We applaud all their efforts to move the disability agenda ahead and we look forward to seeing what’s around the next corner for autism.

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