Federal Funding and the Combating Autism Reauthorization Act
The Combating Autism Reauthorization Act (CARA) of 2011, HR.2005, was signed into law on September 30, 2011 by President Obama, securing the federal response to the national and public health emergency posed by autism spectrum disorders. The law authorizes $693 million in continued federal investment over three years for autism research, treatment and services.
CARA News:
May 5 Update
Autism Speaks Applauds Congressmen Moran, Doyle on Introduction of AUTISM Educators Act
WASHINGTON, DC -- Autism Speaks, the nation's leading autism science and advocacy organization, today applauded Congressmen Jim Moran (VA-8) and Michael Doyle (PA-14) for introducing the AUTISM Educators Act to improve training for teachers who work with students on the autism spectrum.
The bill (HR.5195) would pilot a five-year grant program for public schools to partner with university or non-profit programs in creating training programs for teachers who work with large numbers of high-functioning students with autism. The training programs would incorporate parental involvement and retention of skilled educators.
The bill, called the Autism Understanding and Training in School Methodologies for Educators Act of 2012, states that classroom, teachers and staff “often are not adequately trained to work effectively with students with autism spectrum disorders, who have a wide diversity of characteristics.” The bill also noted the additional challenges faced by members of the military and foreign service due to frequent moves which disrupt the continuity of their children’s education.
"This legislation is the product of a grassroots effort by parents, instructors, school officials and caring communities," said Moran. "Autism Spectrum Disorders are being diagnosed at an exploding rate. We have a responsibility to do everything in our power to provide the best education for our children."
The bill has been referred to the House Education and Workforce Committee.
“Improved training for teachers and school districts is an important component of mainstreaming children with autism into their educational environment,” said Peter Bell, Autism Speaks executive vice president of programs and services. “Better access to behavioral therapy in conjunction with autism-friendly educational settings are key to successful mainstreaming.”
Doyle said, “It's essential that educators are able to take advantage of our rapidly growing knowledge base - and that we increase the number of teachers trained to help autistic students. It's one of a number of actions the federal government should take to help individuals with autism and their families.”
Autism Speaks Lauds Senators Casey, Isakson for Proposal to Raise Autism Funding with New Postage Stamps
WASHINGTON, DC -- Autism Speaks, the nation's leading autism science and advocacy organization, today applauded U.S. Senators Robert Casey Jr (D-PA) and Johnny Isakson (R-GA) for proposing new funding for autism research and services through the sale of autism awareness stamps by the U.S. Postal Service.
The bipartisan bill, S.2472, would direct the U.S. Postal Service to create and sell the stamps over a five-year period to supplement federal support for autism research and services. The “semipostal” stamps would be sold at slightly higher cost with the extra revenues dedicated to autism research and services.
The images used on the stamps would use artwork created or chosen in consultation with individuals on the autism spectrum.
“Autism Speaks commends Senators Casey and Isakson for this innovative approach to raise autism awareness along with new funding for autism research and services,” said Peter Bell, Autism Speaks executive vice president of programs and services.
Congress Briefed on Rising Prevalence, Cost of Autism as CDC Faces Budget Axe on Further Research
WASHINGTON, DC (April 25, 2012) --The Congressional Autism Caucus hosted a Capitol Hill briefing on the recently announced increase in the prevalence of autism and a related study showing how the costs to society and individual families for autism care have soared. The briefing was conducted as Congress weighed budget measures that could cripple the ability of the federal government to continue tracking the growth in autism.
Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), the co-chairs of the Congressional Autism Caucus, sponsored the briefing that was set up to inform Congressional staff and the public on the recent study by the Centers for Disease Control and Prevention (CDC) showing the prevalence of autism has grown to 1 in 88 children and 1 in 54 boys.
In addition, Andy Shih (left), Autism Speaks’ vice president for scientific affairs, briefed the audience on a new Autism Speaks-funded study which found the economic cost of autism to the United States now exceeds the Gross Domestic Product of 141 nations around the globe and ranges from $1.4 million to $2.3 million per individual.
“We already know the burden on families affected by autism is enormous,” Shih said. ”The extraordinary cost further exacerbates that burden. The time and effort involved in coordinating the care and treatment plan across a large number of providers has reduced the ability of many families to earn a living.”
Shih joined two CDC experts who were questioned by the audience about the agency’s commitment to match the rise in autism with increased research. The CDC experts were also asked why the agency does not undertake more definitive research on the impact of environmental factors, including vaccines, on rising autism rates.
Jon Baio, Ed.S., principal investigator for the CDC’s Autism and Development Disabilities Monitoring Network (ADDM), and Marshalyn Yeargin-Allsopp, M.D., who heads the developmental disabilities branch of the CDC’s National Center on Birth Defects and Developmental Disabilities, defended the CDC’s response to the rise of autism, noting that 76 percent of autism research funding is provided by the federal government.
The CDC researchers said they are focusing on better identifying the risk factors associated with autism. The 78 percent jump in autism prevalence rates between 2002 and 2008 is a result of increased awareness and various risk factors, but how much each is a factor is poorly understood, said Baio.
Baio (right) also said the CDC’s Study to Explore Early Development (SEED) is exploring risk factors by looking simultaneously at characteristics of autism, environmental factors and genes.
Congressman Smith (below) noted the “physical, emotional and economic toll” autism takes on families and caregivers, and the importance of early intervention in helping children with autism gain independence. Smith noted how federal funding for tracking autism prevalence evolved from a study of an autism “cluster” in Brick Township, New Jersey into a continuing nationwide surveillance program conducted by the CDC.
The ability of the CDC to continue that surveillance, however, is now jeopardized as a $21.3 million appropriation for the work is in danger of being cut from the 2013 federal budget. The funding had been authorized last year as part of the Combating Autism Reauthorization Act (CARA).
Shih in his remarks said the Autism Speaks-funded study was conducted by Dr. Martin Knapp, of the London School of Economics, and Dr. David Mandell, of the University of Pennsylvania. Autism Speaks has funded another year of study by the researchers to examine how the use of autism therapies reduces lifetime costs associated with autism, he said.
“Their investigation will focus on both intensive preschool behavioral interventions and vocational interventions that support an individual’s independence during the transition to adulthood,” Shih said. “Calculations will take into account costs related to healthcare, education, caregiving, housing, and employment.”
The new study will provide a clearer picture on how early intervention can reduce costs, Shih said, but noted that many individuals with autism continue to require services into adulthood. “The challenge therefore is also about being smarter with how we invest in a good care system for individuals and families living with autism.”
Latest Congressional Budget Fight Jeopardizes Autism Research Funding
WASHINGTON, DC (April 27, 2012) – As warned earlier this year by Autism Speaks, vital federal funding to continue autism research is now needlessly in jeopardy as a result of getting caught up in a Congressional budget squabble over unrelated issues. Read more here.
Sen. Casey Introduces Congressional Resolution Designating April as 'National Autism Awareness Month'
WASHINGTON, DC (March 30) -- U.S. Senator Bob Casey (D-PA) has introduced a Congressional resolution designating April as "National Autism Awareness Month." Referring to new autism prevalence numbers released by the Centers for Disease Control and Prevention, Senator Casey said, "The need to recognize, understand and study autism has never been more important.”
Read the release and resolution here.
Autism Speaks to Congress: Why Do Federal Dollars for Autism Go Down When Prevalence Is On the Rise?
WASHINGTON, DC -- Testifying before House Appropriations Committee, Peter Bell, Autism Speaks executive vice president for programs and services, said the nation's autism community is growing increasingly impatient with what it views as an inadequate federal response to the "epidemic" of autism.
"We are increasingly frustrated and frankly confused by what appears to be a lack of will from Washington," Bell said. "When the number of people on the spectrum is going up, why would the dollars for autism research and prevention be going down?"
Autism Speaks Co-founder Bob Wright Urges Autism Community
to Resist Potential Federal Funding Cuts for Research
WEST PALM BEACH, FL -- With the budget clock ticking, Autism Speaks Co-founder Bob Wright today called on the nation's autism community to urge Congress to protect $21.3 million in autism funding that could be in jeopardy.
The President's 2013 budget request includes this amount to support autism spectrum disorders research and surveillance at the national Centers for Disease Control and Prevention, a slight increase from 2012. But the money for 2013 for the first time is linked to the politically sensitive Prevention and Public Health Fund, which was created by the Affordable Care Act, the health care law of 2010 whose constitutionality will soon be decided by the Supreme Court.
Autism Speaks is concerned that the budget proposal jeopardizes this vital autism funding. Wright said the autism funding, which was authorized last year through the Combating Autism Reauthorization Act, should be considered independently by Congress.
Autism Votes will be leading the effort to protect the funding.
NPR: CARA Passage One of Few 'Bold' Actions Taken by Congress in 2011
In a year-end review of Congress, NPR correspondent Tamara Keith reported on a professor's finding that the current Congress is on pace to be the least productive since the 1880s. The renewal of the 2006 Combating Autism Act, signed into law September 30 by President Obama, was singled out as one of the few significant achievements.
The NPR report said Tobin Grant, an associate professor of political science at Southern Illinois University, concluded that very few of the 80 bills signed into law in 2011 were major legislation.
"Multiple bills continue funding that had already been ongoing," according to NPR. "Others, (Grant) says, include 'taking a bold stance in favor of 9/11 heroes and autism' with the Combating Autism Reauthorization Act and the Fallen Heroes of 9/11 Act."
Reflecting on the current Congress, Rutgers Political Science Professor Ross Baker told NPR, "When you're dealing at this level with issues that are so polarizing, they will basically suck all the oxygen out of both chambers." Read the full report here.
President Obama Signs Budget Bill Appropriating First $230 Million Authorized by CARA
WASHINGTON, DC (December 23, 2011) -- President Obama today signed into law an omnibus budget bill that includes an estimated $230 million in new federal funding for autism research and services, the first of three annual appropriations authorized under the Combating Autism Reauthorization Act.
The funding includes $47.7 million for the Health Resources and Services Administration (HRSA), $21.38 million for the national Centers for Disease Control and Prevention (CDC) and funding to be allocated through the National Institutes of Health (NIH). The portion NIH designates for autism research is expected to be close to the prior level of $161 million. Congress also approved a $5.1 million appropriation to continue autism research within the U.S. Department of Defense.
“We're seeing significant appropriations under the CAA in a most difficult fiscal climate, showing bipartisan understanding within Congress of the national public health importance of autism,” said Peter Bell, executive vice president for programs and services. “The funding through the Defense Department is also gratifying, raising the total allocated to this vital program over $35 million.”
The CAA was reauthorized for another three years by Congress and signed by President Obama on Sept. 30. The funding approved by Congress and President Obama maintains the new appropriations for HRSA and CDC at their FY2011 levels, withstanding cuts that affected many other federal programs. Both the HRSA and CDC appropriations could be subject later in the year to an across-the-board 0.189 percent reduction affecting all health programs.
The appropriation for the Defense Department’s Autism Research Program (DoD-ARP) for Fiscal Year 2012 was cut slightly from previous levels, but the program was continued as part of federal autism research efforts. DoD-ARP is administered as a Congressionally Directed Medical Research Program (CDMRP), similar to current programs for breast, prostate, and ovarian cancers. Research that is funded under CDMRP is peer-reviewed, benefits from the direct input of consumer advocates, and is targeted to the most innovative, promising research in the field.
AUTISM SPEAKS APPLAUDS PRESIDENT OBAMA FOR SIGNING COMBATING AUTISM REAUTHORIZATION ACT
Suzanne, Bob Wright Attend White House Bill-Signing Extending Landmark Combating Autism Act Another Three Years
WASHINGTON, D.C. September 30, 2011 – Autism Speaks Co-founders Suzanne and Bob Wright today joined President Obama at a White House ceremony where the President signed crucial legislation renewing the landmark Combating Autism Act for another three years.
Autism Speaks Hails Historic Senate Vote Renewing Combating Autism Act for Another Three Years
Bill Goes to President Obama for Signature
NEW YORK, N.Y. (September 27, 2011) –Autism Speaks, the nation’s largest autism science and advocacy organization, today hailed the Senate for passing the Combating Autism Reauthorization Act (CARA) by unanimous consent and called on President Obama to fulfill his promise to sign the bill into law. Read more...
U.S. House votes to reauthorize federal autism funding; bill awaits Senate action
By Mari-Jane Williams Mari-Jane Williams is a news design editor at The Washington Post and a regular guest contributor to On Parenting. She lives in Northern Virginia with her husband and two children, one of whom has special needs.
Money is tight in federal Washington these days, to say the least. But autism funding will remain at its current levels for the next three years if the Senate approves a bill that passed in the House of Representatives on Tuesday. Read more....
NIMH Head Warns Autism Research Grants Would ‘Terminate’ Without CARA
NEW YORK (September 22, 2011) – The head of the National Institute of Mental Health (NIMH) has advised Congress that a critical source of federal funding for autism education, and early detection and intervention programs will “terminate” if the 2006 Combating Autism Act (CAA) is not renewed by the end of September. Read more...
Autism Speaks Enlists in Joint Appeal to Senate to Complete Action on CARA
WASHINGTON, DC (September 21, 2011) -- Autism Speaks, the nation’s largest autism science and advocacy organization, joined with lawmakers and other leaders in the autism community at a Capitol Hill press conference today to urge the U.S. Senate to approve the Combating Autism Reauthorization Act as a critical September 30 deadline looms.
The press conference was hosted by U.S. Reps. Chris Smith [R-NJ] (second from right) and Mike Doyle [D-PA] (second from left), the co-sponsors of the bill voted out of the U.S. House of Representatives Tuesday. Peter Bell (center), Autism Speaks executive vice president of programs and services, joined with Scott Badesch (right), president of the Autism Society of America, and Dr. George Jesien (left), executive director of the University Centers on Disabilities, in urging the Senate to act quickly.
Read Congressman Smith's release here.
Read Washington Times coverage here.
Autism Speaks Hails House Approval of Bill Renewing Combating Autism Act for Another Three Years
NEW YORK, N.Y. (September 20, 2011) –Autism Speaks, the nation’s largest autism science and advocacy organization, hailed today’s voice vote by the U.S. House of Representatives approving the Combating Autism Reauthorization Act, and urged the Senate to quickly complete congressional action on the bill and send it to President Obama. Read more...
Autism Speaks Lauds Senate HELP Committee for Moving Vital Autism Bill to Senate Floor
Combating Autism Reauthorization Act Clears First Step, Full Senate Urged to Act Immediately
NEW YORK, N.Y. (September 7, 2011) –The renewal of the Combating Autism Act took an important first step today as a Senate committee moved a reauthorization bill out of committee by unanimous voice vote and on to the Senate floor with just 23 days to go before the act expires. Read more...
Autism Speaks Urges Congress to Pass Vital Combating Autism Reauthorization Act
Bi-partisan Senate, House Bills Would Ensure Continued Federal Commitment to Address Nation's Growing Autism Health Crisis
NEW YORK, N.Y. (May 26, 2011) – Autism Speaks, the nation’s largest autism science and advocacy organization, today urged Congress to act swiftly on newly introduced legislation that would reauthorize the Combating Autism Act (CAA) of 2006. Key components in the original landmark legislation will expire on September 30, threatening further federal support for critical research, services and treatment for autism spectrum disorders (ASDs), which affect a staggering 1 in 110 American children – including 1 in 70 boys. Read more....
Watch Our Presentation on the Autism Speaks Advocacy & Federal Law: A History of Combating Autism:
Summary of the Combating Autism Reauthorization Act (CARA):
Sponsored in the Senate by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY), with Senators Richard Durbin (D-IL) and Scott Brown (R-MA) as original cosponsors; in the House of Representatives by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA).
Extends Existing Authorizations - Ensures that the critical programs established under the Combating Autism Act of 2006 continue for another three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC). Funding would be authorized at $693 million over the three-year life of the bill.
Advancements Under the Combating Autism Act of 2006:
New prevalence studies published by the CDC reports that ASD now affects roughly 1% of children in the US (1 in 110) and an even higher percentage of boys.
American Academy of Pediatrics recommends that all children be screened for autism at their 18- and 24-month checkups. Today, scientists are exploring ways to identify ASD in the first year of life.
First randomized controlled trial of an intensive behavioral intervention for toddlers with ASD shows the intervention provided for 2 years resulted in significant increases in IQ, language ability, and adaptive behavior.
The discovery of a specific autism susceptibility gene involved in brain development is heralded by TIME magazine as one of the top 10 medical breakthroughs of 2009. We now know that autism is related to genetic alterations which, either on their own or together with environmental factors, disrupt normal connectivity in the brain.
New genetic findings prompt large pharmaceutical companies to seriously invest in autism drug discovery research. Pfizer announces a major investment in autism drug discovery which includes a dedicated autism neuroscience unit.
Evidence-based guidelines for physicians are developed to screen, assess, and treat GI conditions in children with ASD.
A study reports that children with ASD have decreased levels of a molecule that is involved in immune regulation, and that too little or too much immune activity during the prenatal period can impair development of neurons. ASD is associated with a maternal history of autoimmune disease, specifically, rheumatoid arthritis and celiac disease.
The Director of the National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee states the increase in prevalence should be taken very seriously, and that there is no question that there has to be an environmental component.
We now know there are multiple causes that contribute to different forms of ASD. Some types of ASD are largely genetically determined, but we know that many forms of ASD involve environmental risk factors. Genetic research will help guide our search for environmental risk factors, and vice versa.
CDC study shows close to 60% of children with ASD have IQs above 70 by age 8. Another study documented 167 cases of individuals with ASD who developed speech between 5 and 12 years of age.
History of Federal Autism Spending:
Funding for NIH autism research increased fivefold since 1997, from $22 million to $108 million in 2006.
Congressional Appropriations Committees have been remarkably responsive to the CAA authorization levels, with autism spending under the CAA totaling approximately $700 million from 2007-2010.
The NIH received economic stimulus funds and invested an additional $89 million in ASD research on top of their regular autism research spending. Some of these funds were designed to address the gaps in our knowledge identified by the federal government’s first strategic plan for ASD research.
Scientists note the landscape of autism research is changing because of the involvement of the private sector, placing advocates at the table of research priority decision-making.
During his presidential campaign, then Senator Barack Obama acknowledged that the urgency and scale of the ASD public health crisis required an investment of at least $1 billion annually in ASD research and treatment, listing autism among the top three health priorities of the US, along with heart disease and cancer.
Breakdown of CAA Authorized Levels vs. Appropriated Amounts ($ in millions):
FISCAL YEAR
HRSA
CDC
NIH
TOTAL APPROPS.
CAA RECOMMENDED
2007
20
15
93
128
147
2008
36.354
16.212
119
171.566
168
2009
42
20.4
123
185.4
189
2010
48
22.061
141
211.061
210
Bill History:
Dec. 23, 2011: President Obama signs FY12 budget bill appropriating first $230 million allocation under CARA
May 26, 2011: Combating Autism Reauthorization Act of 2011 introduced in the Senate (S-1094) and in the House (HR-2005.) S-1094 referred to Senate Committee on Health, Education, Labor and Pensions; HR 2005 referred to House Committee on Energy and Commerce.
Helpful Links:
Read the text of the Combating Autism Reauthorization Act (CARA) (HR-2005) (S-1094)
m, noting that 76 percent of autism research funding is provided by the federal government. 
appropriation for the work is in danger of being cut from the 2013 federal budget. The funding had been authorized last year as part of the Combating Autism Reauthorization Act (CARA).
sm Speaks executive vice president for programs and services, said the nation's autism community is growing increasingly impatient with what it views as an inadequate federal response to the "epidemic" of autism. 
ism community at a Capitol Hill press conference today to urge the U.S. Senate to approve the Combating Autism Reauthorization Act as a critical September 30 deadline looms.
